The Night Watches

.merry christmas.

2011-12-24T23:43:00.002-05:00

.from our family to yours. may the joy of the savior's birth fill your homes.

answered prayer and trust

2011-11-16T16:10:00.002-05:00

Jack's appointment went well yesterday. We had a great nurse take care of us, which was a relief. There were tears, but they were short lived and quickly forgotten with movies and lollipops. This is an answer to your many prayers. I hope you are encouraged, dear friend and reader. God hears and answers prayers.

A couple things were hard to navigate through, but I am prayerfully faith filled for the coming month. Because his counts are still high, and they wanted to increase his dosage to 125%. This is the same dosage that wiped him out last March and put him in the hospital. This was what I was afraid of, and so I was quite apprehensive about agreeing to this. I felt the strength and courage to push back and question this while trying to respectful to the Nurse Practitioner. We came to an agreement to increase his dosage with a count check in two weeks to make sure this dose is not too high, instead of waiting the whole month to check his counts again.

The second issue, was that since we came in a week early this month, they wanted us to come in 5 weeks from now, putting us at December 20. If you do the math, that puts Jack smack dab in the hardest point of steroid week on Christmas day. Nice right? Not ideal to say the least. I asked if we could move this around at all, and our Nurse Practitioner was very hesitant to say yes. He did not think we should move things around too much, and so my heart was beginning to fill with dread as I contemplated this being a major difficulty on such a special time. I asked him to speak with our Sr. Oncologist for a second opinion, as I just felt there had to be something they could do.

Turns out, the Sr. Oncologist was a little less concerned with a week change to his scheudule. So his next appointment is December 13! Praising God for that one. We go in for labs in two weeks.

All in all, the visit was smooth. Jack did get his flu shot, which he did NOT like. Because he cannot get a live virus, he cannot get the inhalant flu inoculation, but has to get a shot (as do all of us). He really hates those needles, but who doesn't. He was a trooper all day. We were gone from 9:30-4, and he just was a snugly sweetie the whole time.

Unfortunately, the steroids are already making him quick to be angry, emotional, hungry and more aggressive just on day 2 of the 7 days that he experiences effects. So the next week is going to be a lot more of that. I feel my need so desperately during these weeks. When he is sobbing and laying on me one minute begging to be carried everywhere (all 40 lbs of him), and then hitting me and yelling at me the next, it is hard for me to not get angry at him or impatient with the constant tears. I have to fight for compassion at some points, which is so sad to admit. But that is the reality. Steroids stink. I am a sinner and respond sinfully. But I know that it is something we have to endure.

Sometimes I want to stop giving him the steroids, or cut a day out of the dosage. Sometimes I wish we could just stop all this right now. Obviously, I know that we must see this to the end, but if I honestly consider where I am in regards to this whole ordeal, I really just want it to be over.

But I know that, not only do we all have to endure it, but we can anticipate grace to have joy and peace in the midst of it. I have to remind myself, that the Lord has a purpose to the process. That each month on steroids, each visit to the hospital, each tear shed and chicken nugget cooked, well they are not without purpose. Even in the mundane, and in the heat of the trial. If the Bible tells me that all things are from the Lord's hand, then I want to embrace even the most difficult with faith. I am grateful I can look back and recall time after time the Lord's help was very real in those wearying moments. And it is in those wearying moments I have to fight the hardest to believe the truths I know in my head. They have to become heart knowledge.

Anyhow, those are the ramblings of a tired momma who only got a couple hours of sleep last night! Thank you for the prayers. We felt them acutely at the hospital. If you see my posts on Facebook, you have seen these iPhone snapshots from yesterday and today already, but I thought I would post them here as well. The last two are of him groaning and waiting for pizza to be finished cooking.

So grateful for your care.

treatment day

2011-11-14T16:57:00.003-05:00

Tomorrow is Jack's treatment day. We are going in a week earlier than the normal schedule, because otherwise he would be all juiced up on steroids on his birthday and Thanksgiving next week, a not so happy scenario for anyone. So because there is some flexibility in his schedule, we are going in tomorrow.

Our appointment is at 10:30, and likely we will get out of the clinic by 1 or so. It seems that we really do not get out of there in anything under 3 hours. Seems the norm for out-patient visits, the average being 4 hours.

Gladly, this is just for a blood draw to get labs and receive his IV Chemo, which means we can bring all the snacks a little boy could ask for! His counts have been on the high side for the past couple visits, so I think he may end up getting an increase in the dosage. The last time the Dr.'s increased his meds (last March), the dosage was too high and he really suffered from it (hospitalized for 10 days in April). I feel this time, that I can say no to the Dr.'s if I feel the dosage is too much. I am praying the Lord give me much discernment and wisdom tomorrow as we discuss these things.

As always, Jack hates to get his port accessed, and it is always a tear filled fight. Another prayer request, is that we get a good nurse to do the procedure. We have had some really great nurses, who have managed to place the needle in his port in seconds, and we have also had some shaky handed nurses that just do not do a good job. So always, praying for the right nurse for us tomorrow.

And lastly, Jack has come to dread these trips. As do I. But there is grace, always grace. I look forward to experiencing more grace, with fresh mercies from the loving hand of the Lord.

just life

2011-11-14T15:36:00.004-05:00

I can hardly give a more succinct reason for why this blog is so frequently neglected than we are busy living life. There has been a lot going on, between school activities, church activities and meetings, and just life! My little boys are growing so fast, their birthdays are around the corner, as are the holidays and with that a whole lot more to do and less time to blog!

I feel like I have been in a season of adjustment and learning, always learning, how to balance it all. I try not to be too set in my ways, that when a new element comes, I am not totally thrown off balance. But that happens too. Seems like a different lifetime, 8 years ago, when Jordan asked me to be his wife. So much has happened in that 8 years.

It seems like we have a rhythm that follows this pattern: Jack's treatment day, followed by a week of steroids, recovering from steroid week, two really fun busy and happy weeks... repeat. In the mix of that somewhat simple breakdown is a busy schedule that we are constantly trying to evaluate if we are doing too much or can do more. It is a tough thing to consider at times, but we are learning how to put our family first in the midst of it all, while still being as involved as we feel the grace and faith to do.

Tyler is learning so much at school. He was not reading before the school year, and has been making a lot of progress in that. He has new songs to sing to us almost every day, and it is amazing to me that he knows (via song) the oceans and the planets and the continents, and so much more. I have been so happy to see him mature and develop these past three months of school. I also have really enjoyed getting to know other families in his class that live in Arlington. We really love our school. Yay ATS!

Dylan, oh my Dylan. He is ever the trouble maker as he ever was. But he has been growing so tall and is talking up a storm. I think he has grown 5 or 6 inches in the past year! What he doesn't have in body mass, he has in height. He is still so skinny, but already tall enough for his 2T pants. Although we do not understand everything he says, he is a nonstop talker, and he cracks us up. I really think he is going to be our most athletic son. He just moves so quickly and with no fear. Meanwhile, I am freaking out a little watching him at his antics. I can hardly believe he will be two years old in just 8 days! Where has the time gone?? Do you ever just watch your children and wonder what things the Lord has in store for them?

Jack is doing really well. His 4th birthday is also just 8 days away! He has grown so much!

He hasn't had a fever in almost two months, and has not had to be admitted to the hospital since April. We are so grateful for this. As he gets older, it seems like he is understanding more of why he has to endure what he goes through, although we cannot be certain he fully grasps the concept of cancer. Each time he is on steroids, it seems to affect him harder. He has been more emotional and hungry, and just an overall train-wreck, these past few months. We try not to do too much while he is on steroids, but it always seems to be a challenging time, no matter how busy or home bound we are. I wish I could explain the madness that takes over him during this time, but I think, that unless you see him before and during, it is hard to fathom such a dramatic change.

Amazingly, we get through those times. Nothing but grace. I am so grateful to have Tyler at school during all this, as being pulled in one more direction can put me over the edge. Simplifying the time to just two kids, has made a dramatic improvement in my ability to meet all the needs with as few tears as possible.

So all in all, Jack is well. He continues to grow, and mature. He is a tender hearted, gentle little boy, who has endured so much. People often ask if he is ever in pain... and I wonder myself, how the chemo that he takes daily effect him. I just come to the conclusion, that because he was diagnosed so young, before he was really talking much, that he has just gotten used to whatever discomfort he may have, as a new normal. He is so tough, and he rarely complains.

We have a dear friend who is occasionally on steroids, and she has provided much insight into our little boy and how he suffers during these times, as she is able to put into words his tears. I am so grateful for her perspective, as it has deepened my compassion and affections to my boy when he is at his worst.

So we are well. Busy living life. God is good and our life is rich and full of happy distractions and happy causes to throw our efforts into. So through it all, the ups and the downs, the lows, and the really lows, the super fun and crazy boy times, to the sweet snuggles. God has been in it all. We have felt His sustaining grace again and again. We have and continue to lean on and learn more of who He is and why He is completely worthy of trust and praise. Even if my worst fears come true, He is mighty to save. We are so blessed.

.jack update.

2011-09-23T13:18:00.002-04:00

Jack went into the clinic today, for his monthly chemo and a spinal tap, only to have the spinal tap postponed for another month because his counts were too low. We have been fighting a bad cold here for the past week, with fevers and stuffy heads and lots of runny noses. Jack had been dealing with a low grace fever off and on for a couple days, and a pretty severe cough resulting in a lot of nebulizer treatments. He seems to be feeling better, but this cold/fever thing has his counts really low. His ANC was only 800.

In the past, when Jack is sick with a cold of some sort, his ANC goes way high. So I was actually surprised that it had dropped so low. So after a shorter visit to the clinic to get his IV Chemo and counts checked, they listened to his breathing and the anaesthesiologist was not comfortable putting him under with the wheezing she heard, along with the low counts.

So we go back in two weeks for a count check/blood draw and in one month for the spinal tap.

As we approach cold/flu season and now that we have a child in school everyday, I am a little more concerned about sickness creeping its way into our home. I am praying for the Lord's protection over our family and Jack.

He starts his monthly week of steroids today. These are tough times for Jack, and so we are gearing up for a week of a messy house and a kitchen always running and tears flowing. Poor buddy doesn't know what to do with all the emotions he feels. But thankfully there is an end in sight, 5 days and counting.

Another update coming soon, i hope.

First Day of School

2011-09-12T12:26:00.004-04:00

And we're back! I keep getting feedback from a few readers, that my absence from blogging has them wondering how we are doing! Well, we are doing great, and I think I will be able to be a more faithful blogger this fall, since one of my babies is now IN SCHOOL!!!

Yup, that is right, Tyler boy is off to Kindergarten this year! He was so excited this morning and has been counting down the sleeps until he started his first day. He missed the first week of school, as we were away on a family vacation, but hey, it's kindergarten right?

This morning, was exciting for him, getting his new school clothes out and backpack on. Watching him walk into that big building, he looks so small. I know he is going to love it, and I am so excited to watch him grow as he learns to read and about science and math. What fun, to be at the beginning of watching your child go to school.

Of course, I made him stand for a bunch of pictures... gotta document the first day your first born goes to school!!

.read this today.

2011-07-07T08:23:00.003-04:00

"In the day you entered into a covenant with God, and he with you, you entered into the most impregnable rock and fortress, and covered yourself in a castle of defence, where you may (modestly) defy all adverse powers of earth or hell. If God cannot save you, he is not God. And if he will not save you, he must break his covenant. Indeed, he may resolve to save you, not from affliction and persecution, but in it, and by it!" - Richard Baxter, from Voices from the Past

So excited to get this book. A dear friend told me about it, and I just ordered it. I actually ordered a few books and I am so excited to get them. Isn't that so fun, being so excited to read new books. I just finished Unbroken, and that was one of the best books I have read in a while. Reading is such a gift, I am so grateful for the many truth-filled books available to consume.

We are busy living life, enjoying summer, busy with family and friends, trips to the pool, cook-outs, keeping the house together, and this poor neglected blog has suffered a major lack of attention. Maybe I will get better at posting. No promises.

A quick update on Jack, he is doing great. Finally got his medicine dosage correct and his counts are perfect. Steroids always mess him up for the week he is on them each month, but other than that, he is doing really well. I did find out that Jack's last day of chemo, hopefully for the rest of his life, is April 13, 2013. Let the count down begin!

.spring.

2011-05-18T13:49:00.004-04:00

All this rain, makes me long for those sunny blue skies we had just this past weekend! I know the rains will make for greener grass, but boy do I miss playing outside. The boys, however, are really enjoying making mud pies.

I don't have much to report on. Life has been returning to "normal" since we got home from the hospital. Jack is feeling good and he has definitely fully recovered from his suffering he endured just one month ago. The kids are learning to play and share, to differ to one another. We are staying home a lot, helping them to learn to obey and trying to avoid spending money unnecessarily (which happens whenever I go near Target)! We have really just been hunkering down at home, enjoying each other, and getting some routine in place, chores established and order.

I took out one of my favorite lenses for my camera and rediscovered why I liked it so much. I spent the afternoon the other day taking pictures of my yard and our fig tree, my kids, and the messes they make in their wake. Good times.

So since I don't have much to say, here are some pretties to look at on a rainy day.

.Simple Faith.

2011-05-02T17:38:00.003-04:00

"All these people were still living by faith wen they died." Hebrews 11:13

"By faith they lived-- it was their comfort, their guide, their motive and their support; and in the same spiritual grace, they died, ending their life-song in the sweet strain which they had so long continued. They didn't die resting in the flesh or upon their own attainments; they made no advance from their first way of acceptance with God, but held to the way of faith to the end. Faith as precious to die by as to live by."

~Charles Spurgeon, Morning and Evening May 2

I read this today and it filled me with hope to live my life well. To live each day not consumed with what I must accomplish, or where I need to go, how I am failing or even how wonderful my successes are; but full of faith that my standing before God has not changed and will not change. It can be well with my soul all my days. I pray this is how I live my life. Not that I am thinking of death over much, but more on how to live my life, so that one day, I might have the same said of me, for the glory of God, because it would be Him alone that holds me to Himself.

.7 years ago.

2011-05-01T10:39:00.005-04:00

Seven years ago, I became Jordan's wife. In that seven years, we have had 3 children, moved 7 times, 1 major job change, 1 cancer diagnosis, and traveled to 5 countries. Man, a lot has happened over the course of our marriage. To think that we have been friends for 9 years and together of 8 years and married for 7... well it is amazing. Where has the time gone?

I certainly do not want to boast in any success story of us. By no means are we just lucky in love either. We have had fights, conflicts, we have had trials and difficulty, just like everyone else. Not every day in our lives together has been perfectly peaceful and without hardship. Yet, throughout the entirety of our marriage, a consistent thread has been woven, a faithful truth has sustained. God has been near to us, he has sustained us, and he gives us hope.

Ours is not a success story or marital success. Ours is a story of two people who have been rescued by a great savior, rescued by grace over and over again. And it is that grace that has helped us to love each other more than ourselves. I see it as amazing grace that our marriage has not been destroyed by Jack's cancer and the difficulties that have been borne from it, but has been forged even stronger together. This time has been chock full of temptations and opportunity to destroy us, that is for sure. But God has sustained us, He has helped us to draw closer to himself and to each other in deep and lasting ways.

Each year, I am left more and more amazed at the countless ways we are perfectly matched. God knew what we needed in a spouse more than we did. It really shouldn't surprise me that God had a perfect plan for me, yet when I see, yet another evidence of the way Jordan was created to be, and how that complements me, well it is just makes my heart so happy.

I love being Mrs. Jordan Kauflin. There is no one I would rather live life with, no one I trust more. Amazing grace that brought us together, that sustains us. I cannot say what the future holds for us, but I am counting on encountering more sustaining grace, and sharing it all with the love of my life.

Thank you for loving me the way you do Jordan. I am not easy to love and yet you do it so well. I am certainly one happy wife.

I've been reading a book by Paul David Tripp, called What Did You Expect? on redeeming the realities of marriage. It has been such a wonderful read. It has been provoking and helpful on so many levels. Our marriage is not marked by conflict, yet there is sin because we are sinners, and Tripp speaks so well to heart of the matter. Here is a quote from it that I just love, as it is based from scripture, hope filled for whatever your circumstances. . .

"There are few things more dangerous to a marriage than the feeling of "arrival." When a couple looses a healthy sense of need, patterns of laziness and inattention grow. No longer does the couple carry around a sense of the enormity of the task they have undertaken. No longer do thay live with a shared sense of need for God's help and protection. No longer are they looking down the road for potential difficulties that may threaten their union. No longer is their marriage protected by humble prayer. Every marriage requires divine intervention.

Every marriage needs divine wisdom. Every couple will be pushed beyond the limits of their character. Every couple will need strength beyond what they have. One of the beautiful things that marriage is meant to do is drive each of us away from habits of self-reliance into patterns of dependency on God. There are few things sweeter and more beautiful than a long-term marriage of unity, understanding , and love.

Perhaps the brightest, most wonderful commitment of the Redeemer is captured in these words from Revelation 21:5: "Behold I am making all things new." New is the operative word for what God is seeking to do in your marriage. You are not stuck. You are not committed to the mistakes of the past. You are not cursed to pay forever for your errors. God is in the work of renewal. He sent his Son to earth in order to make real lasting change possible. God has made fresh starts and new beginnings possible. Reconciliation can take place. Restoration really does happen. What was broken can be healed. The weeds of the old way can die, and flowers of a new, better way can grow in their place. God will not call us to face our harvest without giving us what we nee to face it, and he will not call us to plant new seeds of a better way without giving us the wisdom and strength to do it."

I am grateful beyond words that the Lord is a redeeming God, and he is committed to making all things new. I love walking out the life the Lord has called us to together as he is daily conforming us more to his image. Happy Anniversary Jordan.

.to be home.

2011-04-19T08:42:00.002-04:00

Friday we woke up with the expectation to be staying at Children's Hospital for a couple more days, with Jack's counts crawling there way up to two hundred. I was packing my bag to spend the night at the hospital, only to get a text from Jordan that his ANC went from 90 the previous day to 230! We were likely going to be coming home that afternoon!

AMAZING. Simply put, God is amazing. I could not get to the hospital fast enough. Such happy news. And truly shocking. We had taken him off of the morphine the previous day, and he did really well with that. The doctors finally figured out what virus he had, Roseola. He had pretty much a textbook case. Fever for 5 days, then he broke out into a head to toe rash. We thought the rash might have been a reaction to the blood transfusion he got, but it stayed until a day ago, and a reaction to blood would have looked a lot different.

So, we came home Friday afternoon. My mom, who had been watching Tyler and Dylan kept them one extra day, so we could re-acclimate to being home. We had hoped that Jack would love being in his own bed so much that it would be a peaceful, restful night. We went out for ice cream to celebrate being home, and then came back with high hopes for a quiet night. Ah, well, Jack, you see had gotten used to us being not only in the room with him 24/7, but in bed with him at night. Yeah....so sleeping has not been too great.

In fact, since Friday, Jordan and I have been up taking turns every night putting him to bed again, comforting him, ect... I think it is harder to get out of your own bed at night than a hospital bed. Being in your own bed means coming out of deeper sleep, which is no fun.

So Tyler and Dylan came home Saturday morning, the boys ran to hug each other and then were off to play together. A very happy reunion. That made our hearts exceedingly glad. We spend the past few days re-adjusting, getting back into a rhythm. Although the past few days, Jordan has been spending with us, so today marks my first day flying solo back into things.

Since being home, we went to the zoo, had out first dinner outside on the deck of the season, went to our church all together to worship the Lord, and spent lots of time laughing. How can I tell you how grateful I am to have this time together again? It is hard work to being a family of 5 with crazy kids and a weak and tired little guy, but work I gladly do.

Jack goes in on Friday to get blood work done to see what his counts are, so we can restart his daily chemo or not. He has been enjoying the past couple days all medicine free. It has been a nice break for all of us.

Strangely, the skin on his hands and feet has been peeling. Imagine when you get a blister, and the skin is all new ans sensitive underneath. The blister part us that thick skin and it is peeling, and it hurts. Well, that is the entirety of his feet. It is pretty yucky, and it hurts him a lot. Please pray for his little feet. There isn't much I can do for him, except give him Tylenol and clip the skin as he lets me. Poor buddy.

We are grateful beyond words for the many many people who have been praying. It blows me away to see the church doing what God has called it to do with so much joy. It makes me love His church more, humbles me to be the recipient of such care and support. Amazing how The Lord not only changes our hearts and saves us, but then gives us new hearts that want to serve and love others. I love the church more after this time, I don't know how to thank those who have so generously taken such good care of us. Thank you for the continual prayers. For the support. We love you guys.

.wait.

2011-04-14T11:58:00.003-04:00

Another day here at Children's Hospital, sitting in our room, while my baby sleeps. He was up most of the night, having trouble sleeping, mostly due to the fact that I was not sleeping next to him in his bed. I tried to get him to let me sleep on the couch, but he would not have it. He also was having a tummy ache most of the night. Somewhere between the alarms beeping when his meds were finished and him crying because i wasnt next to him, i caved and snuggled up for the remainder of the night. I think that was at 3:30... So now he is sleeping away.

This morning, his counts took a little dip. I had been expecting them to go up maybe a little, not holding out for them to go too high, but instead they went down a little. The Dr. Isn't concerned. Kids like Jack can have a little bit of a mini roller coaster ride with their counts going up and down. We are hoping that the upward swing continues tomorrow and through the weekend, and we will be able to leave by Saturday or Sunday.

His counts are as follows:
ANC 90
Red blood cells 8.2
White blood cells 1.0
Platelets 93

We wait for his counts, specifically his ANC to reach 200.

I do want to say, that yesterday was such a great day for Jack. He was laughing and making jokes, making us smell his stinky feet and then cracking himself up about our reactions. He went to the playroom twice and had two bowel movements! The first bowel movements in a week or more! He seemed more himself than he has in over a week.

The mouth sores seem to be healing too. So good. So now we just wait. Wait for counts to rise, for his body to heal. I read this today and it was an encouragement to me as we wait on the Lord.

Wait

The psalmist says, "Wait on the Lord; be of courage, He shall strengthen your heart. Wait, I say, on the Lord!" (ps. 27:14). There is no real danger. You are safe while God lives, while Christ pleads, and while the Holy Spirit dwells in you.

Do not be fearful and unbelieving. "Wait on the Lord; be of good courage." Wait on the Lord as a beggar waits for a handout. We have gone to God's door, knocked, and waited, and obtained gracious answers. Wait, but knock as you wait. Knock, but with fervent pleading and strong confidence, for the Lord Himself waits to be gracious. Agonize in desire. Make the door of mercy resound again and again with your resolute blows. The Lord is good to those who wait on Him. He will answer you in due time, and you will never be sent away empty handed. It is your Father's business to provide for you. His name is Jehovah Jireh.

It is your Father's business to preserve you. He has given His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone (ps 91:11-12).

It is our Father's business to mark the future. Our eyes are dim. We cannot see tomorrow. But our Father knows all about tomorrow, and He will be ready for whatever happens.

Therefore, I wait on Him. I raise no questions. I expect great mercies. Blessed are you if you also wait on Him.

Beside still waters, pg 68 Charles Spurgeon

.happy counts.

2011-04-13T09:43:00.002-04:00

Just got his counts for today. I was expecting them to hit rock bottom. Zero. But happy news for today, his ANC went all the way up to 100!! Praise God! He had a blood transfusion yesterday, and then slept the rest of the day away. We are trying to space out his Morphine dose a little bit today, to see how he is really feeling and to see if less helps with the constipation. But if he is in any pain again, we can up the dose again. We are spacing it from every 2 hours, to last night it was every 3, and today we are going to try for every 4 hours. We will see how he is doing with that for now.

I did get a smile or two out of him yesterday, which was the sweetest moments of the day. I hope today is a much better day. I am staying with him today and sleeping there tonight, so I will not be able to update much till tomorrow. We still have a long way to go to complete recovery, BUT we are finally headed in the right direction. Keep praying for our little guy. His mouth sores still look pretty bad. He ends up drooling a bit even when he is awake, because it hurts him to swallow.

Red Cells: 8.5
platelets: 80
ANC: 100

Psalm 30:8-11

8 To you, O LORD, I cry,
and to the Lord I plead for mercy:
9 "What profit is there in my death,
if I go down to the pit?
Will the dust praise you?
Will it tell of your faithfulness?
10 Hear, O LORD, and be merciful to me!
O LORD, be my helper!"

11 You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
12 that my glory may sing your praise and not be silent.
O LORD my God, I will give thanks to you forever!

.where do we hope.

2011-04-12T10:53:00.002-04:00

How kind of the Lord to lead me to truth this morning, and meet me in my sorrow with the truth that he is mighty to save, and that we can hope in Him. I know he sees every tear, and every plea. My help comes from the Lord.

Psalm 33:6-22

6 By the word of the LORD the heavens were made,
and by the breath of his mouth all their host.
7 He gathers the waters of the sea as a heap;
he puts the deeps in storehouses.

8 Let all the earth fear the LORD;
let all the inhabitants of the world stand in awe of him!
9 For he spoke, and it came to be;
he commanded, and it stood firm.

10 The LORD brings the counsel of the nations to nothing;
he frustrates the plans of the peoples.
11 The counsel of the LORD stands forever,
the plans of his heart to all generations.
12 Blessed is the nation whose God is the LORD,
the people whom he has chosen as his heritage!

13 The LORD looks down from heaven;
he sees all the children of man;
14 from where he sits enthroned he looks out
on all the inhabitants of the earth,
15 he who fashions the hearts of them all
and observes all their deeds.
16 The king is not saved by his great army;
a warrior is not delivered by his great strength.
17 The war horse is a false hope for salvation,
and by its great might it cannot rescue.

18 Behold, the eye of the LORD is on those who fear him,
on those who hope in his steadfast love,
19 that he may deliver their soul from death
and keep them alive in famine.

20 Our soul waits for the LORD;
he is our help and our shield.
21For our heart is glad in him,
because we trust in his holy name.
22Let your steadfast love, O LORD, be upon us,
even as we hope in you.

Psalm 34:17-22

¹⁷When the righteous cry for help, the LORD hears
and delivers them out of all their troubles.
¹⁸The LORD is near to the brokenhearted
and saves the crushed in spirit.

¹⁹Many are the afflictions of the righteous,
but the LORD delivers him out of them all.
²⁰He keeps all his bones;
not one of them is broken.
²¹Affliction will slay the wicked,
and those who hate the righteous will be condemned.
²²The LORD redeems the life of his servants;
none of those who take refuge in him will be condemned.

.counts.

2011-04-12T10:03:00.005-04:00

Jack's counts are really low today. Hard to not be discouraged with these numbers.

ANC: 10

Red Cells: 6.6

White Cells: 0.6

Little buddy should be getting a transfusion today, as these numbers are well below what the cut off is. These numbers are not what I had hoped for.

Pray his bone marrow stop being suppressed and that it start making lots and lots of new blood cells so he can recover and feel better.

I haven't gotten an update from the Dr. yet. Just counts.

"When I am afraid, I will trust in you" Psalm 56:3-4

quick update

2011-04-11T21:09:00.002-04:00

I am exhausted and about to turn in for bed, after a long 30 hours at the hospital with Jack. And though the time there is long, there is no where I would rather spend my time right now. Jordan is at the hospital tonight with little buddy. I am really glad I spent the night with him last night, mainly so Jordan could get some much needed rest. It was also really beneficial to be there as we realized that his pain management needed to be adjusted significantly. By 3 am, we figured out the Jack needed to get IV morphine every two hours. He has been on that since, and as much as I hate to see him so groggy and glazed over, I know that he is not in as much pain as before and sleeping has come a lot easier.

He kept spiking fevers last night and today, which is no good, but his blood cultures keep coming back negative, which is really good. It is hard to not know what is causing all of the fevers and what virus he has. Every time a doctor comes in, I interrogate them if questions, and feel like am I getting a medical education.

This morning was a bit discouraging, as his counts dropped even lower. His ANC went down to 15. There were several moments in the day when fear would creep its way into my thoughts. I had to hold those thoughts at bay, and focus my attention on praying for my boy and caring for his needs. There is no grace for what ifs and the unknown future. Just for the moment I am in, one at a time.

So a big find today though is that his immunoglobulin or antibodies are extremely low. This is a good find, because unlike the virus that they speculate he has that is really untreatable and you have to wait it out... this low antibody can be "fixed" and once that happens, his body should start healing much more quickly. They are giving him a plasma infusion full of antibodies, and so in a few days, we should see some change.

I do think the sores on his lips look a little better today, so even though his counts are low, I am hopeful that today was the low and he is on the up and up. Please pray for his bone marrow to start cranking out the white blood cells. Please pray that that sores he has would dry up and heal and that his pain would be lessened.

Thanks for praying everyone. This has been the most pain he has experienced this entire journey, and it is hard to imagine what families go through when this is a common experience. It makes me grateful that this has been our only experience like this. And as sad as it is to see him glazed over, it is better than seeing him in so much consistent pain.

A friend put this up on her blog the other day, and it has been so helpful to me. Thanks Kelly for posting some truth from Jerry Bridges:

31 For the Lord will not cast off forever,

32 but, though he cause grief, he will have compassion

according to the abundance of his steadfast love;

33 for he does not willingly afflict or grieve the children of men.

Lamentations 3:31-33

God does not willingly bring affliction or grief to us. He does not delight in causing us to experience pain or heartache. He always has a purpose for the grief He brings or allows to come into our lives. Most often we do not know what that purpose is, but it is enough to know that His infinite wisdom and perfect love have determined that particular sorrow is best for us. God never wastes pain. He always uses to accomplish His purpose. And His purpose is for our good and His glory. Therefore, we can trust Him when our hearts are aching or our bodies are racked with pain.
~Jerry Bridges, Trusting God Even When Life Hurts

.Another rough day.

2011-04-09T22:26:00.003-04:00

Before I get into how Jack is doing, I must thank you for praying for my boy. Thank you for lifting us up in prayer. Thank you for serving us practically with meals, child care, and many many other numerous ways we have been served. We are so grateful, and humbled that so many would take the time to read about and pray for us. So thank you.

I am not sure how much detail to go into... the last time I updated the blog, just a few nights ago, we were home gearing up for another night caring for our boy. I forget that when I am updating on Facebook, I am not getting to the blog! Tonight, my home is missing two beloved men... Jack and Jordan are sleeping at the hospital. Jack was admitted Friday morning with a fever of 102 and since then, he has only gotten worse.

His ANC has gotten all the way down to 40 this morning, and that is after a blood transfusion. He is pretty much miserable right now and has been for the past two days. He is on codeine to ease is suffering, and he is getting loads of antibiotics as well.

I wish I could say that after being at the hospital for more than 24 hours, that he was doing better, but as of tonight when I left, he was about the same. Which is miserable. He was given a blood transfusion last night which transfusion gave him a much needed bump in the oxygen rich red blood cells, but he is still very weak. The sores in his mouth seem worse than before, and are truly hurting him greatly. They are pretty much all over his tongue and lips and it just hurts him so much. He can hardly eat, even drinking is painful. He has gotten to the point of trembling and sobbing, hiding under his doggie blankets. We are hoping to get him some numbing mouth wash tonight. The nurse might have already gotten it to him, I pray.

They gave him some meds today to adjust the Ph of his urine, so that it is less acidic and hopefully less painful to pee.The main issue with peeing is that he has a large blister/sore on the tip of his urethra and it is agony to pee with that there. He still has not pooped. I have lost track of how many days it has been since his last poop. The results of the xray taken last night were that his bladder is extremely swollen and there is a large mass of poop in his bowels. Peeing seemed to get a little easier for his as the day progressed.

I have to say, that seeing him like this has been agonizing and heart breaking. I want so badly to ease his pain, take the mouth sores away, calm his fears. I do not think I will ever forget the fear and agony on his face as he was desperate to pee last night but terrified of it. It is one of the most difficult things I have had to walk through, watching my baby suffer as he is. We are trusting God, and not blaming him... but it is difficult none the less. Without hesitation, I would gladly take his place. I know he is longing for home right now, and I pray that the Lord comfort him, that he been keenly aware of the presence of God.

Before all of this took place I had been reading on the suffering of Jesus, leading up to his crucifixion, and the sorrow and suffering he experienced. The fact that he was alone in his sorrow in the garden before his arrest, tells me that I would never be alone in my suffering.He knew suffering to greater depths than we could ever endure, and he is compassionate towards us. That he gave himself completely and voluntarily to be beaten and bruised, so that I could be accepted as a child of God, leaves me undone at the lengths he has gone and the love he has shown. He bore my sin, his Father turned his back on him as the weight of my transgressions were put upon him, he gave perfect self-sacrifice, leaves me wearing the perfection of Christ. I know that he weeps with me. I know that he is familiar with my son's suffering, and I know that he is near, very near, even in a hospital room. How glad it makes my heart to know that he his familiar with our grief.

I rest in him, I pray my son knows this peace as well.

.update.

2011-04-06T20:43:00.002-04:00

Little buddy is tucked into his bed, hopefully for the night, and at least for the next couple hours! Turns out he had an ear infection brewing in both ears, and the sores on his mouth have gotten worse. The dose of steroids he has been on has been actually helping keep him going, as it turns out, his blood levels are very low. In fact, they said that if they had been at the clinic earlier in the day, they would have given him a blood transfusion.

His ANC has gotten down to 670 and his platelets are below 80. Not the kind of numbers you want. So we are fever patrol, praying that he does not get sick in the next week, as a fever will automatically have him need to be admitted to the hospital since his counts are so low.

They have lowered his Chemo dosage down considerably, in the effort for him to rebound back to a healthy level. He is also on two antibiotics for the ear infections and the mouth sores that they think are a viral infection. We also are giving him pain meds at night to help him sleep along with another dose of steroids tomorrow. It is a strange thing to see 5-6 syringes of medicine in front of you.

Jordan told me, that while the nurse why trying to access his port, he was crying and said to her, "Why are you hurting me??" It dawned on me, that he has no idea why he is going through all this. When he was first diagnosed, he was too young to understand any of what was happening. But he is getting older, and can understand more now, and is obviously perplexed by most of it. I am going to spend some time thinking and praying through how to talk to him about it, and how often, ect. We don't want to unnecessarily put fear in his heart, but we do want him to understand as much as a 3 1/2 year old can.

Thank you friends for praying for us and for him. We are so grateful. The prayer requests from earlier are mostly the same.... rest and healing, relief from pain in his mouth, and ears, and peace in his soul and ours! The next step is to go back in 2 weeks to get a blood level check, and hopefully that will be the only time in the next two weeks we will have reason to go back.

.quick change.

2011-04-06T12:20:00.003-04:00

Last night Jack was up pretty much all night (he only slept between 3 and 5 am) with ear pain and mouth pain. Instead of doing another middle of the night ER trip like last week, we are taking to the clinic today. And instead of waiting until Friday to do his blood work and going a second time in one week, that will also be done this afternoon.

We hope it is just another ear infection and something a little dose of antibiotics can take care of, and that the appointment will go quickly and smoothly. Jordan is taking him now, so that I get a break from the hospital and another Dr. visits for a little.

I would trade places with Jack in a heartbeat though. I hate seeing the tears in his eyes and his pleas to not go to the Dr. I know that one day, this will be behind us. For now just praying that Jack be more aware of the love we have for him and the nearness of God, than the pain he is currently experiencing.

"God is our refuge and strength, a very present help in trouble" Psalm46:1

"When my spirit grows faint within me, it is you who know my way." Psalm 142:3

"When I am afraid, I will trust in you" Psalm 56:3-4

"He will tend his flock like a shepherd; he will gather the lambs in his arms; he will carry them in his bosom, and gently lead those that are with young." Isaiah 40:11

Thanks for praying friends.

Jack update

2011-04-05T14:08:00.000-04:00

Its time for a little Jack Update!

Little buddy is doing OK. He has a full head of hair again, which has grown back in much more curly than before, and a little different shade of blonde. I miss his hair short, and since it was becoming quite bushy, I gave him a little hair cut yesterday. I think he looks adorable, no matter his hair! He has grown quite a bit too. I think he has gained a couple pounds over the past year and has gotten taller too.

Since he got his port put in back in October, he has has not had one fever or infection in his line. This is amazing! Just goes to show that the likely hood of the tube he had before being the culprit for so many infections in the year prior. We have enjoyed many baths and spontaneous activities we were not able to enjoy before, due to the fact that we had to keep his tube dry. Life has become more normal for all of us in a lot of ways that one would normally take for granted!

The latest things were are working through are getting his meds to the correct dosage while he is in this last stage of his treatment. This "last" stage will last 3 more years, and he will be on low dose Chemotherapy every day of it. He takes various chemotherapy by mouth everyday. And we go into the clinic one time a month for IV chemo. For the last 6 months, his counts have been WAY too high. The goal of this long term maintenance, is to keep him immune suppressed enough that the cancer cannot grow back, but not so much that he is at constant risk of sickness. The number we are shooting for is between 1,000 and 1,500. For the past 6 months he has ranged from 4,000- 7,000. Then, just this past month, the Dr. upped his chemo dosage by 25%.

Leading up to this change in dosage, I have really been wrestling with fear. Mainly fear of relapse of cancer in Jack. It has been a battle, not one daily, but mainly when he would go in for a blood draw and we would find out again, that his counts were too high. Although the Dr.'s reassured me that this was totally normal, my heart and thoughts were hard to reign in. I read so many great truths during these months that really encouraged me. And it was also during this wrestling, that I again, learned how to lean on Jordan in a deeper way. I have often withheld fears, trying to figure my way out on my own. The Lord has kindly been showing me that this is not going to work! He has given me a husband who is strong and wise, and gentle... who cares for me well when my soul is troubled. Another kindness from the Lord to me.

The past few blood draws, his counts have been getting lower and lower, the last one being just this past Friday was 860. This was also accompanied by a very difficult week of multiple visits to the Dr., and ear infection, a mild case of jaundice (which has given his a yellow look and well, an unhealthy appearance), a middle of the night ER visit, and many oral medications added to what he already takes, and a mystery virus that has wreaked havoc on his body; giving him mouth sores, and aches and pains all over his body. With his counts being as low as they are, he is tired all the time, laying around the house. That alone has been hard to watch.

So, here we are today. Little buddy is exhausted most of the day, and all he has been wanting to do is lay around and be held. Even though he is on steroids this week, it mainly seems to be affecting his emotions (which are all over the place, but mainly in the crying and whining side) and his appetite, and not giving him the energy boost we had hoped for. It makes me wonder how much lower his counts have gotten since this past Friday. We go in this Friday for more blood work. Each time we go in, he is miserable, as he hates the port access where they poke him with a needle... But he is brave, and recovers quickly, especially when I bring lollipops.

To say that last week was a little on the hellish side for us, well, I think would be accurate. Between the lack of sleep and Jack being up a lot at night, the tired and sick boy who is often in pain with the mouth sores, and all the meds he has been on... Well, we are grateful it is a new week, a new day, with new grace. I read this a little while ago in Morning and Evening by Charles Spurgeon.

“I have chosen thee in the furnace of affliction.”

Isaiah 48:10

Comfort yourself, tried believer, with this thought: God says, “I have tested you in the furnace of affliction.” Does not the word come like a soft shower, assuaging the fury of the flame? Yes, is it not an insulating armour, against which the heat has no power? Let affliction come—God has tested me. Poverty, you may stride in at my door, but God is in the house already, and he has tested me. Sickness, you may intrude, but I have a balsam ready—God has tested me. Whatever happens to me in this vale of tears, I know that he has “tested” me. If, believer, you require still greater comfort, remember that you have the Son of Man with you in the furnace. In that silent chamber of yours, One sits by your side One whom you have not seen, but whom you love; and even when you aren't aware of it, in your affliction He prepares a bed and smoothes a pillow for you. You are in poverty; but in that lovely house of yours the Lord of life and glory is a frequent visitor. He loves to come into these desolate places, that he may visit you. Your friend sticks closely to you. Thou cannot not see him, but you may feel the pressure of his hands. Can you not hear his voice? Even in the valley of the shadow of death he says, “Fear not, I am with you; be not dismayed, for I am your God.” Remember that noble speech of Caesar: “Fear not, thou carriest Caesar and all his fortune.” Fear not, Christian; Jesus is with you. In all your fiery trials, his presence is both you comfort and safety. He will never leave one whom he has chosen for his own. “Fear not, for I am with you,” is his sure word of promise to his chosen ones in the “furnace of affliction.” Wont you, then, take fast hold of Christ, and say—
“Through floods and flames, if Jesus lead,
I'll follow where he goes.”

If you think of it, please pray for our little buddy. Pray that this virus would quickly pass through his body. Pray that his counts get to a good level. Pray that he would get rest at night, and that he would experience the nearness of the Lord. Please pray for us as we care for him, and for us to continually trust in God for all of this.

.Cherry Blossoms.

2011-04-05T12:06:00.003-04:00

For years I have been wanting to go down to DC for to see the cherry blossom trees with Jordan. And for years, it has either rained, or we have missed it for various reasons. Well, since we live only 15 minutes from downtown DC, we had no excuses this year! We packed it up and headed into the city with the masses! We had to park really far away, but it was so worth it. It was a perfect day, and although the kids were tired from the long walk, we enjoyed our time. And being that we live so close, it isn't a huge flop when we only stay for a little visit! Some pictures of the our day... you might notice, Jack doesn't look that happy and energetic... well he hasn't been feeling very well. I am working on a Jack update now, and hope to post that in a few... but for now, here is our day in DC.

.Tyler turns 5.

2011-03-26T15:50:00.001-04:00

It can hardly seem possible that I overlooked this post! It has been in my draft folder for almost 3 months! My big little boy, is a month away from being 5 1/2! He seems to be getting so mature, so big, and it has been happening so fast. I think that he has hit a growth spurt in a major way, eating all day long, constantly telling me how hungry he is. He just seems so big to me!

He has gotten to the size, where snuggling him is a little clumsy. Like he is too big to fit in my arms and lap anymore, and doesn't really want to sit there for too long anyhow! He still is my little sweetie though, and I grab snuggles from him when I can. He has become such a great helper to me both with Jack and Dylan. Whenever Dylan is naughty, or trying to splash in the potty, or unroll the toilet paper, Tyler is on the run to save the day!

It is hard to believe he will be entering Kindergarten next year. Where has the time gone? There were so many moments, when pregnant with Tyler, and our lives were about to change to much, I had no idea how much, but I knew it would be quite a change! He was a perfect baby, and such an obedient toddler. But then he got a little older and also got a younger brother.... He is dramatic, and loves to be around people, and loves to talk, and sing, and dance, and is clever, and inquisitive. He asks questions about everything, and loves to try to figure things out on his own. He is a special little guy.

I really cannot wait to see him as a young man. I really love him as a boy... he is going to make one lady very happy one day... a very very long time from now!

I love you little buddy. I am so grateful for the gift you are to our family and the joy you bring to your daddy and me. We are a blessed family to have you.

Our little vacation

2011-02-28T13:29:00.010-05:00

A little over due, as usual....

We had the privilege to travel to the Bahamas with a couple from our church back in January. Jordan and I had been meeting with them, doing their pre-marital counseling, and when they asked if Jordan would marry them, we had no idea we would be going on a destination wedding with them. We were thrilled to be able to go, and the Lord brought some work my way, that helped us be able to afford this trip. He is so kind. We were so excited to have some time away without the kiddos. Even though the travel took forever, we were just so relaxed and happy to be there.

I took loads of pictures, but if I waited until I got them all just the way I wanted, they would stay in my folders on my computer forever. Here are a few from the island...

Oh, yes, and the real reason we were there... Joel and Shana got married!! It was so beautiful and so much fun.

ah, but preparing for the trip was a lot more work than I had planned. Jack was on steroids while we were gone. My heroic mom took care of him for us. So kind. The days leading up to our departure, I spent packing up the kids, who went to two locations and prepared ton of meds for Jack. It is amazing how much we just do... Like how much of his medical care has become so normal, and it is only when I am giving it off to someone else, when I realize it is just a little complicated!! Jack was well taken care of while we were gone, as were Tyler and Dylan, who were with Jordan's parents.

Jordan and I had so much fun. Just being able to come and go as we pleased, sleep in, talk without interruption...sweet times. We were pretty stoked to be there. It was a lavish kindness from the Lord, and we were so grateful.

.one year ago.

2011-02-09T22:34:00.003-05:00

One year ago, while the east coast was buried under 30"+ of snow, Jordan and I found ourselves at Children's National Medical Center, trying to wrap our minds around the news we have been given a few hours prior. Our son had cancer. We sat in our room, trying to figure out how to tell our families, who to call first, what the next steps where, and how to be strong for our scared little boy. It was a blur of emotions and many many conversations with staff, in information overload, emotional overdrive.

The way all of this unfolded was just a whirlwind. As I said in the previous post, we had just been snowed in with some friends, during the biggest snow storm we had ever had. Our pediatrician is just amazing. And he knew a second storm was heading our way, and as soon as he could get to his office, he called me to see if we could come in before the second storm hit, just to see how the second antibiotics were affecting Jack. When we got there, what the Dr. saw concerned him. He told me we needed to get Jack to the ER to have specialist look at him. He was convinced that if Jack had Lyme disease, then we should have seen some improvement by then.

I drove over to where Jordan was studying, he was in a school of ministry at the time, and walked in the class full of fear. Jordan and his classmates talked to us, and prayed for us. The Lord really met me in those moments. I took Jack home, packed a bag, and got a plan going for what to do with our other kids. My dear friend Sandy, who has 6 kids of her own, joyfully took Tyler on, even without knowing how long we would be gone. Tyler could not have been in better hands.

Jordan and I discussed whether I should come or not, since we had Dylan with us who was only 10 weeks old and still nursing. I almost didn't go to the hospital. We thought that Jack might just get stronger IV antibiotics for the Lyme disease and come home the next day, never thinking he might have something more serious. Jordan had an overnight bag packed for him and Jack, and I grabbed a few things in my diaper bag for the baby. And we left, with the plan for me to head home once the snow started picking up.

Well, after a whole bunch of tests, several hours later, and about 4 inches of snow fall, the Dr's in the local ER sent us to Children's Hospital downtown. Still unclear as to what his diagnosis was, they said he needed to see some specialists. The info they gave us was vague, but the seriousness of what was going on became quiet clear. I googled what the symptoms I had heard were... which is never a good idea. I found Lymphoma, and was shocked. We packed up the car, and we headed to Bethesda, to trade cars with my dad, who had an SUV. Finally, around 11 pm, after driving in pretty rough weather we arrived at the ER in DC.

Unfortunately, upon arrival they said Jack needed another IV put in his other arm (he had one in already and it was covered with a diaper, so he wouldn't touch it). Again, another battery of tests began. My dear friend Lisa drove in the snow (and got quite lost on her way home) to be with us. Jack was amazing through it all. He snacked on the only food I had, a bag of Apple Jacks! He watched the movie Cars at least 4 times.

As the night wore on, i started feeling more and more nauseous. My stomach was churning. We were doing a lot of comforting each other and Jack. Jordan read me Psalm 46 several times. It was finally at 3 am, that the Dr, two nurses, and a social worker came into our room and said they had some news to share with us. We stood around Jack, Lisa holding Dylan, and braced ourselves.

They were kind, they were very sorry, but they had found that Jack had Leukemia. I don't even remember much of what they said after those words were said. My mind filled with questions. They told us we would be getting a room upstairs in the Oncology floor, and they asked us if we were ok. We asked to be left alone. Everyone left us alone with Jack. And then we wept. Hard. I don't think I can say more than that. Our hearts were broken.

So, how do you move on from that? We were moved upstairs, into a room with a crib (which is more akin to a cage) and knew that Jack would never sleep in that, he was already so scared and exhausted. So Jordan and Jack snuggled on the "couch" and I tried to sleep in the arm chair. Sleep was hard to come by, even though I was exhausted. The Dr.'s came to explain things to me at 6:30 am in a separate conference room while Jordan and Jack kept sleeping, and in a haze, I was given a plan for the next few days of what Jack would undergo.

It was a lot to process. I just remember going back to the room after that conversation with the Dr.'s, getting Jack's shirt he had been wearing the previous day, smelling his sweet smell, and crying out to God. How could this be? My heart's cry was one of true desperation. It was in those moments, alone in the bathroom with Jack's shirt, that I emptied my soul out to God. I cried harder than I thought I could, curled into a ball grieving for my baby. This time, alone and weeping, when one would think you would feel utterly alone and abandoned, I felt a glimmer of hope. And I found, in those moments, my God to be there, in my grief with me. His presence was tangible, his comfort real. In my despair, I knew that I was not abandoned, that Jack had not been forgotten by God. I knew in my heart, that if God would send his own son to die in my place, then he would surely be with Jack and our whole family. I walked out if the bathroom, grieving and uncertain of what was coming, but eager to be with Jordan and Jack and face what came with faith that God was there.

Jordan and I both say, that in those first days, it was amazing to see, that all the things we have read and studied in the Bible and believed about the Lord, were proven true. He IS faithful, he DOES sustain. Our lives were forever changed that day. But, I now see that it was this path the Lord has called us to. And he has been near to us every step of the way. Each day has had various challenges, but there has been grace for each of them, one day at a time. We have walked through things I never thought I could handle, yet here I am. By grace alone. Our God is bigger to me than ever before.

Thank you to so many hundreds of people who have prayed for us so many times. Thank you for your support, your care, your kindness, gifts, love... we have been carried by it and are undone, that a year has passed and you have been with us in it. Thank you.

I didn't have my camera, so all of these images are from Jordan's iphone... this is all I have of the first days of this journey.

.requesting prayer for today.

2011-02-04T09:17:00.002-05:00

Today is yet another treatment day at the clinic! We go in once a month for IV Chemo and blood counts. Today is also the start of Jack's monthly 5 days of steroids. The past 3 months, these visits have been harder for Jack than before, because of his new port. He has grown in fear of these visits, each time I tell him we are going to the Dr. he cries.

We love the port, as daily life is so much better than when he had his tubie, but the times when it has to be accessed is really scary for him. We put numbing cream on it, so I do not think he is feeling much pain when they put the needle in it. I just think he is scared. Who wouldn't be, when your mommy has to restrain your arms legs, and head and a nurse is coming at you with a giant needle?

As soon as the process begins, he starts crying, begging me to stop holding his hands and let go of him. So, as you can imagine, I really do not like these times. So please pray for my little buddy today. We go in at 11 am and hopefully he will have his port accessed soon after that. And pray for grace for the next week of steroids and its awful havoc it wreaks on his body.

Another month down, only 36 more to go! Thanks for praying!

coming up on 1 year ago...

2011-02-02T21:08:00.011-05:00

I have recently been looking back through all my old emails (hundreds), journal entries (which are few) and blog posts (even fewer) of what was happening in our lives 1 year ago. If you didn't know, the one year mark of Jack getting diagnosed with Leukemia is coming in just 7 days. I simply cannot believe it. I think to my self, "How can it possibly be a year...Already." Yet at the same moment, the conflicting thought is "That's all it has been, is only one year??"

I have been trying to remember the order of when Jack became sick, and what we were thinking during that time... I found several gchat conversations between Jordan and I, after yet another sleepless night, and crying sick children. It seems at times, as I read those, that I was barely holding on to faith. But now, I can clearly see, that it was the Lord who had a firm grip on me, and my roots were being forced deeper into the soil as trials kept coming to us.

The timeline is just crazy to me to look back on. And more for me, so that I remember, and less for you (my dear friends and readers) will I recount the days and nights before he was officially diagnosed with cancer. This will be kinda long I think... sorry!

I have been trying to trace back to the beginning of all the sickness, when it actually started. You see, pretty much the whole month of December 2009, all three kids were getting colds, ear infections, croup, bronchitis, ect. It seemed like when one got better, another one would get sick. The first email trail I found was of Jack having a cough and runny nose, and ear infections in December, around the 14th of that month.

Since we had a newborn at the time, I was not sleeping much to begin with, then enter a toddler who was not talking much at the time, with only a few words in his vocabulary, up at night crying and sometime screaming for hours. These next few weeks seem like a mushed up blurr of dr.'s visits, and sleeping when I could.

By January 8, Jack had already had several colds, and had a double ear infection and was clearly in pain. He was on antibiotics for his ears.

By January 15, Jack had pain in his arm, and elbow joint and was still having head pain (which we thought was due to the ear infections). He had been on various antibiotics already trying to clear these up. On the 15th, I took him to get an ex-ray of his arm, as he could not straighten it without crying even putting his shirt on was painful. We thought maybe, this was to due to rough play with Tyler. The same day, I had to take Dylan to the ER for RSV, where he was admitted for a 24 hour stay. Tyler also had croup at this Dr. visit. Hey, when it rains, it pours, right?

On January 17th, I began to notice Jack glands swelling a little. He was up most nights crying, and was just miserable most days. He was in pain, and we just did not know what was wrong.

On January 18th, Jordan and I both noticed that Jack was limping. How could not put full weight or pressure on his right leg. He would hobble around the house, often stopping to cry. Yet there were also moments he would run around. It seemed, at first, that this pain would come and go.

January 19th, I went to change his diaper first thing in the morning, and saw that all of the glands in his groin were swollen to the size of very large marbles, and clearly visible under the skin. I freaked out. I did not know that there were even glands there, and immediately thought he had tumors all over his body. I made an appointment with our pediatrician that day, and Jack had blood work done.

January 20, his counts came back normal. Shocking, but a few other tests were not ruled out, as the pediatrician thought it could possibly be a case of Lyme Disease.

January 22, due to the increase of antibodies in his blood, the diagnosis was Lyme Disease. Jack was started on a 28 day cycle of antibiotics, in the hopes to nip it before it got much worse. By this time, however, Jack could not even walk due to the pain in his legs and groin. When we were unable to carry him around, he would crawl or drag his pained body around. It broke my heart to see him like this. He was not sleeping at night, wanting to be held and comforted, and I had a nursing newborn as well, up all night. These nights and days were a blur of exhaustion and survival. I prayed that the antibiotics would work quickly, hoping to see change. There were certainly moments, when he would seem to feel better, and I thought, maybe we had caught it in time. Because of the pain he seemed to constantly be in, we gave him Motrin and Tylenol around the clock, which seemed to take the edge off some of the time.

February 1, he began to have head pain, pulling on his ears, and holding his head. The Motrin and Tylenol were not doing much for him at this point, and I believe he got another ear infection.

February 3, The glands around his face swelled and he looked totally different. His jaw was once angular had become puffy and squared off. They were swollen 3 inches wide and 3 inches down. hard as rocks, his glads were completely full, trying to fight infection in his body. The Dr. changed the antibiotic he was on to the strongest oral antibiotics you can take, hoping to fight this even harder. The antibiotics he had been on for almost 2 months, really had messed up his digestive system, so not only was he miserable because of the mystery illness, he was also having serious bowel problems. Poor little buddy.

February 5-8, we were snowed in! Our dear friends, Kevin and Jami came over with their kids and we stayed warm and ate good food, and took care of all our babies together. This was a reprieve, it seemed, from Jack's pain, and was a really sweet time for our family. We made many memories that weekend, and I will cherish this time for the rest of my life. Jack played with the other kids, and although he did not walk around much, and did not love the snow, he didn't seem as bad as he had in days before.

February 9, our pediatrician called me to see if we could bring Jack in before the second snow storm blew in. He wanted to see if there had been any improvement, before we all were stuck home for who knew how long. That visit, our dr. told us that he was not pleased with what he saw. That Jack should be responding by now. So he told me to go home and get a bag packed and go to the ER. And this brings you to the 1 year mark of true diagnosis. I will recall the events of that night and the days following later.

For now, I just marvel at the sustaining hand of God. Jordan and I both were going on a couple, maybe 2 or 3 hours of sleep for almost 2 months. Actually, if you consider that Dylan was born November 23, I had not been sleeping soundly for much longer than that. We were utterly exhausted, we were weary, we were perplexed, and we were desperately seeking to not think too far down the road of what-ifs. Jordan was in the Pastors College, and was trying to study, write papers, read hundreds of pages, preach a sermon, among other things, and help me stay sane!

We were so aware of our weakness during this time. It was so plain, we were helpless. It seemed nothing we did helped our poor boy, and we certainly were not holding our bodies together. It was the Lord, who sustained us, who continues to uphold us. Jordan and I clung to verse such as this during this time:

Isaiah 40:27-31

Why do you say, O Jacob, and speak, O Israel, "My way is hidden from the LORD, and my right is disregarded by my God"? Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

We had dear friends pointing us back to the Lord time and time again, and it was there that we found comfort, and there that we continue to look. Man, I am tired just writing this all out, and thinking on it. A somewhat funny, at least to me, thing that has occurred and wonderful lesson I have learned over the past year, is that I think that I value the sleep I get more than I ever have, it truly is a gift from the Lord, but now, I seldom get angry or even tempted to feel sorry for myself, when I have an interrupted night or even no sleep at all. My heart has finally accepted the fact that 8 blissful hours of sleep each night is not some thing I deserve or HAVE to get, as nice as it is. I will be able to function the next day, I can have a cheerful heart in the midst of a sleepless night, because it is God who upholds me with his righteous hand, and is giving me the grace for each moment, one at a time. This change is HUGE for me.

Ok so this post is long enough. I will cap the ramblings here. If you have read to the end, well, thank you. And I thank you even more deeply, for loving us, caring our burden with us the past year, and being a part of all of this, even many of you from a distance. We feel carried by grace, in tangible ways, every day.

.one of those days.

2011-01-18T08:46:00.003-05:00

Yesterday was one of those days. You know, one of those days where tears seemed to come on their own, unbidden, almost as if out of nowhere. We were in the car driving to Baltimore, to enjoy a family day together at the Maryland Science Center, when it dawned on me that my heart was heavy. As if I was under a cloud. I was just sad. If you know me, heaviness of heart is not something that typically describes me. But it also is certainly something that I have walked through before, and I am sure will feel again.

I began telling Jordan that I felt weak in my soul, and then the tears just came. Sometimes the reality that we have no medical guarantee of Jack being cured of his cancer, that there is always a chance that he might relapse, that we will have to go through all this again, that he might need a bone marrow transplant, and there is always the possibility that he might die from this cancer.

Sometimes this reality is more than my heart can bear. All of this. The pain, the hurt, the uncertainty, the changes in his body and life. Picking him up and feeling the port under his skin, giving him chemo everyday. Sometimes, it just grieves my heart. Sometimes I just want to curl up and hold him and cry.

I am grateful that these moments come, they make me take each moment with my children- ALL OF THEM- so much more precious to me. I have been more purposeful with them, snuggling and kissing whenever they are near. These moments, they sober me.

Jordan asked me some questions about what truth I can believe to help me not to despair... which was good. I do not think I was despairing, but I was sad. Sometimes I just need to cry. Get the raw emotion out. In my mind and heart, I am not doubting God. I know that even though we have no medical promise of complete cure, we have a savior and King who loves us infinitely more than I can imagine, and since I know that Jesus came to die for the sins of the world, there can be no room for doubt that he will give us lavish grace for whatever lay before us. I know this to be true. This brings peace to my soul.

I know that it is dangerous ground to tread, this land of what-ifs. There is no grace for it.. not yet. So it becomes a dance, a tricky balance of looking to the future, although uncertain, and holding fast to truth and faith, the only thing I have that is in fact, certain. I read today from a sermon by John Piper the following, "The ultimate purpose in our weakness is to glorify the kind of power that moved Christ to the to the cross and kept him there until the work of love was done. The deepest need that you and I have in weakness and adversity is not quick relief, but the well-grounded confidence that what is happening to us is the greatest purpose of God in the universe. That is what God is building into our lives."

So good, right? Yet, sometimes I just need to have a good cry. Even in the midst of sadness, I can still say, by the grace of God alone, that it is well with my soul.

.1 year old.

2011-01-15T13:51:00.007-05:00

As with all things here, I am really behind in getting this post up! So on the same day that Jack turned 3, Dylan turned 1 year old! Yes, it is true, they have the same birthday! I was induced with both boys, and we figured that having the kids birthdays only a day apart was not as fun... so now we have a big party for both boys. This past year has flown by. Dylan was my biggest baby by far, weighing a whopping 9lbs 2 oz. The labor and delivery were pretty much the same as Jack, and he was instantly dear to my heart. It was amazing to hold this little one, with a head full of dark brown hair, and just love him so completely from the start.

As I was gathering pictures from this past year, I was reminded of things that I had already forgotten! Right before Jack was diagnosed with ALL, Dylan was admitted to the hospital for RSV. He also had a serious case of thrush, that lasted a painful 5 months or so. Oh, and I just remembered the cradle cap he had, man did I try everything to get it off! It was a good thing he had all that hair to cover it up. It was yucky! And I couldn't stop picking at it! Poor little buddy! But he would nap through the many yells and screams of his brothers, and that made life a whole lot easier, especially since he was in our room until he was 11 months old!

As things got more and more serious with Jack, Dylan was a gift of pure JOY to us from the Lord. He really was an angel baby, although he did not sleep through the night until he was 6 months old. When we were at the hospital for Jack, when he was first diagnosed, we almost didn't bring Dylan with us, as we were not even sure how long we would be at the hospital. There were so many moments while we were there, that having the happy distraction of Dylan and his little needs, were a balm to all of us. It was good for Jack to have a little buddy there too. Many times the staff would come into our room and say, "So I hear there is a baby in here?" Dylan was so quiet and peaceful, they barely knew he was there.

Then when he turned 6 month old.. he started army crawling all around the house, and ever since then, he has been on the go. This little squirt is one of the fastest crawlers, and is always in a hurry to get places. You cannot turn your back on him, as he always goes straight for the potty, and wants to splash and play in it like it is his own personal pool. Yuck. He is a stinker that is for sure, but oh how he melts my heart. One little head tilted smile of his and I am putty.

I love his snuggles, which are far and few between, because he is so busy getting around, snuggling takes too much time. So that makes them all the more special to me.
I love the way he tries to keep up with his brothers, and joins in the fray of silliness and tackling. He is one tough cookie.
I love the way he smells too...
I love how tiny he is. By far my biggest baby, but he has been my smallest child as the year has gone on. He has the tiniest little waist.
I love his BIG brown eyes. They melt me.
I love that he will eat just about anything.
I love his adventurous spirit. I wonder what he will be like as a toddler!! Even more so, what the Lord has in store for him as he becomes a teenager and one day a grown man.
I love the way he lights up when he sees me. He is a ray of sunshine to me no matter what is going on in my day.
I love that he sits still for Jordan. Amazing.
I love how fearless he is.
I love the way he says momma. It is the best first thing in the morning.
I love this special boy for so many reasons and I cannot imagine our family without him.

Some pictures of my little buddy.

.3 years old.

2010-12-29T19:20:00.006-05:00

get yourself ready, because this is a long post. complete with loads of pictures too!

a little over one month ago, my sweet Jack turned 3. I think I have said this many times over the past year, but one year ago, seems like a very long time ago. Three years ago, well that seems like another lifetime. I know that we are a completely different family than we were when we were waiting for this precious gift to arrive.

My easiest pregnancy and delivery, and my most chill baby too. So much like his daddy, in his disposition, to the shape of his eyes, the way he takes things in stride. This time one year ago, he was hardly talking, why talk when Tyler would do such a good job of it for you?! But now, the funny things he says! He was born the day after Thanksgiving, and what thanksgiving we give to the Lord for the precious gift of his sweet life.

How can a mother find words to clearly express the impact her child has had on her, even a child of only 3 years. From the beginning, when he was born, the transition from one child to two, proved to be tiring, hard work, and hard on some days. I knew being a mother was not an easy job, yet there where days when I just could not muster the strength. There were so many moments when I wanted a clean house, more than I wanted to snuggle and savor. Now, three years later, I call myself a fool for moving too quickly past these moments. How kind of the Lord to use a wee babe to show me just how weak a vessel I truly am, and how utterly dependant I must be on him. This lesson continues on.

My sweet Jack, has taught me to slow down, to take my time, to give my affection more freely- when it is not just convenient- but all of the time, to never be too busy to snuggle or talk, he has taught me to be patient and he has taught me what long-suffering looks like. He has suffered, and we have watched him suffer, trying our best to ease his discomfort, pain, and overall frustration with circumstances. And yet, through it all, he always always comes to the end with more joy than I thought humanly possible. I do not think Jack knows how to feel sorry for himself. A lesson I am learning from him, and I am sure will continue to learn from him.

"The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own,' or 'real' life. The truth is of course that what one calls the interruptions are precisely one's real life--the life God is sending one day by day: what one calls one's 'real life' is a phantom of one's own imagination. This at least is what I see at moments of insight: but it's hard to remember it all the time."-- C.C Lewis

This boy loves life, he is full of so much effervescent joy and energy. For a little 3 year old, that only sleeps between 6-8 hours a night, he is amazing. He has been through one of the hardest trials the human body can face, yet his life is not ruled by it. He is still Jack. Not a sick little boy, even when he was in fact sick and was not feeling good. He is just a little boy.

Oh the list of things that I love about this boy is a long one. Even as sit here thinking of them, my eyes are filling with tears. I remember thinking, when I was pregnant with him, how could I possibly love a baby as much as I loved Tyler. The idea of loving another child as much as the first was beyond my comprehension. My heart doubled in size the first moment I held you. What a silly thought to have, I think now.... yet as a first time mom about to have her second, it was a very real one. Now, three little boys later, I am amazed how the Lord fills us with new and unique love for each little life we have the joy to care for.

How could I have known, of all that your life would bring to my own? I could not have planned these circumstances for us, likely I would never have even dreamed or chosen to have a son battle with cancer. Yet here we are. As much as I hate to see you suffer, have not liked the tears shed, the hours of sleep lost, the pain suffered... God has been made bigger in all of our lives because of it. He is all we can cling to, and what a steadfast rock he is. Your life has helped me to see these things so much more clearly, and, to my sweet three year old baby, your mommy thanks you.

My sweet Jack, oh I love you my baby boy.

i love the way you rub your tag on your blankie when you are falling asleep

i love the way you smell, your breath, your head, your neck... you just smell so good to me

i love the way you play with my hair when I am holding you

i love that you want me to rock you and sing to you every night (although my arms don't always love it)

i love that you want to be like Tyler in every way, trying to do what he does and imitating him in your own little way

i love the way you skip and hop, so delicate on your feet

the love how hard you give hugs, like you want to tell me just how much you love me in that hug

i love the way you are so simple, content to play with Mater and McQueen all by yourself

I love the way you like to surprise me

i love that you always want to hold my hand

i love our special times at the hospital or clinic, just you and me

i love your joy for life, your bottomless energy

i love how much you adore your daddy.

i love that you love our family

i love the way you say thank you to the nurses and doctors every time you see them

i love the way you are so brave and tough. it has served you well my son

i love being your mommy, the greatest honor in my life.

a few pictures from the past 3 years

We live, I promise.

2010-11-11T15:05:00.003-05:00

No, the move didn't kill me... I am still here, alive and well! Actually, living a pretty blessed life. The move however, has changed how I am living life these days, and have little to no time to sit at the computer and blog! But here I am, sitting down... ignoring the laundry for a few minutes, the dishes in the sink, and the crumbs on the floor... I think an update is way over due!

To recap the past month, well would be a very long post. I am not sure the poor readers of this neglected blog would enjoy all of that! So I will do my best to be brief:

- We moved to VA October 9, and were thrilled to be here. We had tons of help, and are pretty much settled already into the house. Boxes are the enemy! So our goal in the first few weeks was to empty as many as possible! We generally, sit in the various rooms and marvel at the gift this home has already and continues to be to us.

- The first night the kids came home, Sunday, Jack spiked a fever and Jordan spent 6 hours with him in the ER downtown. They got home some time around 3 am. We were surprised they sent him home, but then they called back Monday at 10:30 pm to tell us his blood did have an infection... again surprised they did not have us come in. The next day, we got a call from our primary nurse, who was extremely stressed that he was not in the hospital getting antibiotics. So, Jack was then admitted and spent the rest of the week in the hospital. What a first week in our new home!

- While at the hospital, his tube in his chest broke, it had gotten pulled on and twisted so much, it just fell to pieces. I went to change his diaper, only to find his chest and diaper covered in blood. This was not what I had hoped to see. I picked him up in my arms, ran into the hall to get help, and tried to calm him down. The nurses and Dr.'s came flooding in, the tube was clamped and we all recovered. I think Jack has an adrenalin rush, because after all that, he was super hyper. Because his tube broke, he had to get an IV in his arm, which sadly took several times, and left Jordan with blood on his pants, and Jack quite miserable. They were able to fix his tube without surgery, and they came home on Saturday.

- Since we have all been home, we have had unpacking, adjusting, time changes, and new daily chemo routines to adjust to. The boys had a rough time at first. Moving out of Jordan's parents home, that is filled with many memories, people, and distractions; to just mommy with them all day and everything being new, provided quite an upheaval for them. Then add the week of Jack's hospital stay, it is not too surprising that we are just now getting things settled here.

- Jordan and I LOVE living in Virgina. Seriously, i love it here. Our home is conveniently located near pretty much all my favorite stores, only 35 min from the hospital for Jack, and minutes from most friends and people in the church. We love our neighborhood. Today, I took the kids on two walks around the area, to a playground and just on some paths. We live real close to 4 Mile Run, a paved path that is 4 miles long, and is lined with trees and parks. We are loving being only 10 minutes from church, and loving living in community with the people at Redeemer Church of Arlington.

- Dylan took 4 steps to me today. He is my most active child, and is just crazy sometimes. We just got him (as of today) to start going down the steps backwards instead of head first, which was his preferred method. He is a joy, but boy is he active. Hard to believe he will be 1 in two weeks!

- Tomorrow, Jack goes in at 6 am to get his port placed in and his broviac tube removed, at long last! It is looking like it will be a long day, starting at 5:30 am, and who knows when it will end.. hopefully by naps. Jordan will be with him at the hospital. We are praying the procedure go well, without problems, that Jack recover well, and that this be an improvement to life for him in general.

So that is life in a nutshell. I have many many many pictures to post, who knows if I will get to them! I will try.

.We're Moving.

2010-10-01T23:00:00.003-04:00

God certainly loves to surprise and delight us, doesn't he? We have been waiting on Him for a while now, hoping our insurance situation would somehow get worked out so that we could start to look for a home to rent in Arlington. Looking back on the last time we were going to try to get a house and the Lord shut that door, we are just filled with gratefulness that is was not our will, but God's will that was accomplished for us. What a mess it would have been to try to move down to Arlington a month or two ago!

This past Tuesday, Jordan was talking with our insurance company, and trying to figure some things out with them, when we found out that in fact, our carrier provides insurance coverage to the region of Northern VA in addition to Maryland! This came as quite a shock to both of us, and we were delighted to discover that we could indeed start the house hunt up again!

The beginnings of the hunt were not showing to be too exciting. I found a few on craigslist worth taking a look at and a one or two on the listing our realtor sent us that worked within our finances and needs. One was a cute little bungalow, and the other was a nicer home near to the hospital. On Saturday, we stopped by both homes, and were both uncertain about what we felt about them.

That night I went to a baby shower for my sister in law, very much excited and in faith that even if these two homes we saw were not the ones for us, that the Lord would provide and that we could patiently wait on him. That night, I did my normal nightly routine (very patient, right?) and got online to check and see if there were any new listings on craigslist and the MLS database. That was when I found two bigger homes within our limits.

We had previously decided that we wanted a smaller home, since we do not really need that much space, and so I was not looking for that big of a home. We simply needed a home with a room for a renter (a friend from our church will be living with us) and a room for Jordan to have his office in, and bedrooms for the kids and us (either one room big enough to fit all three boys in or two rooms for the kids and a master for us). Tricky to find all those things together, but we knew God has something to meet our needs out there! We had no idea how lavish God was about to be on us!

Monday afternoon, our realtor took us out to visit some of the homes we thought might work. We went to the first of the bigger homes, and I really liked it. It seriously has enough room to have two families living in it. It was huge. It was quirky, and retro, and something about it was really charming to me. Then we took a look at two smaller homes, that might have fit the criteria, but the room set up was all wrong. So we were running out of time, as we had made plans to bring dinner to friends, but decided to stop in this last home.

On a quick side note, this last home, was listed on MLS on Saturday afternoon. We got to see it 2 days after it had been listed, and I "happen" to see it the day it was posted.... God is so wonderful isn't he??

So we drive up to find this...

Pretty isn't it?

Then we walked in to find this... yeah... I was just about screaming/ squealing/ laughing/ crying... pretty much my dream kitchen!

and this perfect room for an office for Jordan

and a great big room to be together with friends and family...

How does this kind of house even sit on the market for a day? It can only be the Lord. The story with this amazing home, is that is was the retirement home of a military family, that was about to move into it, when they were stationed in California. They tore down the original and built up a brand new home on top of the old foundation. Amazingly, as it is pretty much all new, there is not a hind of mold or mildew, which was a big concern for Jack's health.

So we put in the application the next day, and prayed that the Lord would make his will clear, and for favor with the Landlords as they reviewed our application. We were confident, that if this home was not the one, the Lord had something different for us, and it would be just right for us. So we waited. While we waited, I feel like I learned some old truths in new ways. You see, I have been taught that, the Lord does not treat me according to what I do or measured what good things I have done in my life to earn favor and rewards. And yet, as I sought to wait patiently for the outcome of this application, I realized that I was tempted to want to have faith so perfectly, so that God would give us what I wanted!

It became so clear to me that no matter how responded to this test, whether full of faith or complete distrust and failure, that those things would and could never change the Lord's disposition towards me at all. This great truth sank in so much deeper, the truth that because of what Jesus has done for me on the Cross, I am a daughter of God, and not because of anything I could ever do, but because of His perfect life. Romans 3:3,4 resonated with me in a whole new way. It says, " ³What if some were unfaithful? Does their faithlessness nullify the faithfulness of God? ⁴By no means!" This truth just took hold of me in such a profound way, and all I can do is sit back and marvel and say, "Look at all the Lord has done!"

Oh man, sorry to go on that long-winded way of saying, I really learned a lot over the course of waiting to find out if we got this amazing home. So since all that was so long, I will just cut to the chase!! The next morning, a happy email from our realtor told us that the house was basically ours, and we were just waiting for all the paperwork to be done, and should be signing a 2 year lease some time next week!

I was shaking I was so happy! Oh, and it still has not sunk in at all! Here is the crazy part , well maybe just another crazy part.... we are going to move NEXT SATURDAY!! In one week! I have been packing as much as I have been able to, gathering boxes and tape. It has been a whirlwind, full and exciting. We have a lot to get done over the next week, but so much to look forward to! We are so excited to be living down in Arlington, and, well, this sweet house makes it even more exciting!

Tyler and Jack are really excited too. Jack has been doing great, and although he has not been sleeping much, and we are pretty tired from his many middle of the night interruptions, he has been full of life and joy. We are grateful beyond words to the Lord for his lavish goodness to us. Thanks for all the prayers for our insurance situation to be worked out and for housing! I am so aware of the many prayers being said on our behalf! Much more to tell later! Thanks for reading all this!!

.10 months.

2010-09-29T22:34:00.002-04:00

Oh I love my sweet little Dylan boy... He is such a cutie pie, and he keeps me running around after him. With three teeth, and a fourth on its way, this little rascal is done with baby food, almost altogether. He sees mac n' cheese, he wants it. If his brothers are eating something, so must he! He is also chasing after them all day, joining in the wrestling and tickling, he is a speedster when it comes to getting places. I often loose track of where he is, because he is gone so quickly. And yes, the boy loves to climb the stairs. I have no idea what kind of man he will become, but it is certain God has gifted him in unique ways, and it will be a joy to watch those gifts develop and grow as he gets older. But for now, I am a busy mommy to a rascal of a boy. I love every minute of it.

.book recommendation.

2010-09-24T10:32:00.004-04:00

I have been asked many times, what are you reading these days? Over the past 8 months or so, I have been reading and re-reading and devouring this book. Be Still My Soul by Nancy Guthrie was a gift to me from a dear friend, and what a gift it has been to me. I cannot, simply cannot recommend it enough. It is a collection from 25 different authors on the topic of suffering and pain, with the preface by Guthrie (who lost two children in their infancy).

The writers within the covers of this book have become dear friends to me, many of whom I had never read of and a few I had never heard of, but now feel I can go to at any time and come away refreshed, re-focused, full of faith, and more in love with my God. This book has been a tremendous means of grace to me, and I am so grateful to have been "introduced to the friends" contained within its pages.

I have posted some quotes on facebook that have meant a lot to me as I have been reading it, and as I now am reading through it for the third or fourth time, find that every page has a morsel of truth that can re-direct my wayward thoughts to truth so effectively. Here a few quotes that are a small example of the riches found in this book.

"We are all, in our turns, disposed to think our own trials peculiarly heavy, and our own cases singular. But to them who ask this question we may answer, Yes- there has been sorrow greater than yours. If we conceive of him hanging upon the cross, speaking in this language to us, "Was ever any sorrow like my sorrow?" must not we reply with admiration and gratitude, "No Lord, never was love, never was grief like thine." The highest wonder ever exhibited to the world, to angels, and men, is the Son of God suffering and dying for sinners."

-- John Newton

"You may not understand what is happening to you; it may seem, to you all wrong. Trust yourself to Him. Believe when you cannot prove. Hold on to his constancy, his justice, his eternal purposes for you in Christ. Regard these as absolutes, which can never be shaken, remain steadfast and unshaken, confident that ultimately all will be made plain and all will be well." - Martyn Lloyd-Jones

"The test of suffering reveals whether our "knowing why" is an irreducible bedrock conviction grounded in the revelation of God in Jesus Christ, or whether our faith is resting to any degree on what is not bedrock, but sand."-- Os Guiness

‎"When the winds of suffering blow in our lives, what we need most is something secure to tether ourselves to, something strong and unmovable that will keep us from being swept away in a storm of questions, fear, discouragement, and disillusionment. We have a true "anchor of the soul". "- -Nancy Guthrie

"Trials are like a ire; they burn up nothing but the dross and they make the gold all the purer. Put down the testing process as clear gain, and instead of being sorry about it, count it all joy when ye fall into divers trials, for this bestows upon you a proof of your faith."

-- Charles H. Spurgeon

I cannot recommend this book enough. Even to those who are not experiencing trial or suffering, it is a wonderful reminder of the gospel that we all need reminding of daily. I found myself weary again this morning, after many nights of little to no sleep and the demands of my three crazy boys, and after spending some much needed time with my God, and my "friends" found in this book, I find myself in a place of humble and grateful faith for what the Lord has for me today.

the beach

2010-09-22T21:48:00.002-04:00

Ahhh, I miss the beach! Have we really already been home only a week and a half? The sound of the crashing waves seems such a distant memory already! Although this vacation was quite different for us and more difficult than the many years past for many reasons, the beach days could not have been more amazing and memorable. Couple perfect weather, kids who love playing all day, a group of people just happy to be together, and joy from the Lord for the gift each day was... it was a wonderful vacation.

I wanted to take tons of pictures, but when you have a baby who knows no fear, and is crawling headlong into the ocean, stuffing handful after handful of sand in his mouth... and two big boys that want to play hard all day... there was very little sitting down time, and less time to hold a camera and a baby... but oh so worth every moment with my boys. Here are a few shots of those precious memories and sweet beach days...

We're Back

2010-09-14T15:43:00.004-04:00

We just got back Sunday night from a week long family vacation to the Outer Banks.This is the annual Kauflin family vacation that we have been going to as long as we have been married, and for way longer than that for the Kauflins. We got to Corolla NC right after hurricane Earl swept through, to the most perfect weather we have ever had. Everyday was a perfect beach day, which our kids all loved. I will post about the beach soon.

Just wanted to give you all an update on what has been happening with Jack since we have been home from the beach. The day after we came home, Monday, I took him in for a scheduled spinal tap and the nurse and surgeon both agree that his "Tubie" (central line) has an infection, as well as serious cold. As of Monday morning, he did not have a fever and the entry site into his chest looked a little better than it had previously (while on vacation it had begun to get red, swollen and a little pus was coming out). We were able to enjoy the last days of vacation without fever, and kept putting topical antibiotics on his tube, which seemed to help greatly. Although, both the surgeon and the nurse agreed that it looked like the tube had come down and out a little more, and would need to be replaced sooner than later, they did not give me clarity as to the when all of that would be happening.

Since he did have an infection, they would not use his line to give him any more meds, or anesthesia for his spinal tap, but used the gas instead, which freaked him out a little bit. They also had to draw several viles of blood from his ankle, which cause him a good bit of pain during the day. His cold symptoms worsened as the day progressed, and he began having breathing difficulty into the evening. We gave him a nebulizer treatment at home, and have been watching that closely.

Around 5:30 Monday evening, he developed a fever, which went away on its own after half an hour, but by 8:30 his fever was back. It has been quite clear all day that he is not feeling well, he hadn't eaten anything all day, and had been crying and generally upset all day. That evening, yellow pus started coming out of the entry site on his tube/chest again (which also occurred on the last few days we were at the beach). We called the Oncologist at Children's and they told us to come on in to the ER. So Jordan took him to the ER at Shady Grove. Praise the Lord he did not need to be admitted, and was just there to get IV antibiotics. Jordan and Jack got home at 3 am and both collapsed into bed.

Today, Jack had an appointment to get more chemo, which was postponed until Friday, due to the fact that we do not know yet if the infection has migrated up into his tube in his body. He was given a second dose of IV antibiotics, but today he was able to get it in his tube and not in his arm. He will also be on antibiotics for the next 10 days. It looks like he will get a port put in, but if the line is not infected, it will be in two weeks. Not sure exactly what will happen if it is infected. I guess we will cross that road when we get to it.

Little buddy is sleeping now, and Dylan and Tyler are in the capable hands of my mom. It has been a long two days at the clinic for me and the boy. He is such a trooper though, and I could not be more grateful that he is already responding to the antibiotics. The infection already seems to be looking better. SO thank you for your prayers. We are so grateful.

.update.

2010-08-21T22:23:00.000-04:00

Long over due, as usual.... Can you believe we are finished with Delayed Intensification already? The time in Jack's treatment I dreaded most, has come to an end! And even though there was an 8 day hospital stay in the middle of it all, it was better than I thought it would be by far! Jack is such a trooper, and has endured so much. He has been full of energy on most days, which is a joy to us all. When we walked into the clinic last week to start the next round of chemo, the Dr we work with smiled and said, "You did it! You made it through the toughest part! All down hill from here!" Wow, enter an audible sigh of relief!

He began his next phase of chemo treatment last Friday, and has another dose of chemo every 10 days until the end of September. This past dose, he came down with some mouth sores and thrush, which are common side effects of the chemo he was given. After a few days, of most foods hurting his mouth, the sore healed up enough that eating was not painful, and now the thrush is almost gone too. And his energy has not diminished much at all.

Jordan and I recently were going back on all the blog posts about this time in our lives, and we have just been struck with how merciful God has been to us. Although this trial has been great, the grace we have encountered has been greater. God has protected Jack from so much, and he has just breezed through so much of this time. So many prayers have been answered, and we all value each other so much more, respect one another, and love more deeply than ever. So much fruit has been born from this trial, and we are undone at the mercy of God.

On the house front, we did get the house we had applied for, but did not have peace about moving forward. So we ended up declining that home. Then we moved on to another home, and were in the process of applying to rent it, full of faith and eagerly anticipating moving in the coming month. Well, I went down on Tuesday last week to turn in our application, take pictures, and move in in my mind! When I got home from this, Jordan had the fresh news that our insurance is dependant upon us STAYING in MD. The plan we have is a Cobra Maryland Continuation Program from his previous employer. SO,we are now NOT moving until November. Crazy times.

So I really struggled with this news. I do not think in my mind I was doubting the good plan of God. I know in my mind, that he has the best plan for us. But believeing that, truly holding fast to that was where I was struggling. I think I was wrestling with disappointment, which I know was normal, but then I started feeling sorry for myself. I was so consumed with how hard this was, that I failed to see the hand of God in it, and in turn, see it as for my good. I have been so provoked by the following line in William Cowper's Hymn, "God moves in a mysterious way, his wonders to perform."

"Judge not the lord by feeble sense, but trust him for his grace.
Behind a frowning providence, he hides a smiling face."

Oh how quick I am to assume I know what is best for me. That I can some how see all the variables, know what the perfect scenario is, understand the hearts of all around me. How glad my heart is to know that although I cannot claim any such knowledge, there is one that does. It took me a couple days to wrap my mind around this truth, and other ones like it. I feel certain that the Lord is bringing us through the deep waters of trial of various kinds, so that our faith is deepened, He is glorified, and we grow in our love and utter dependence on a loving Father.

I have many pictures to post, so hopefully (we shall see!) I can get some up soon. Thanks for praying with us, for asking how we are doing, and for standing with us during this time. We are so amazed at the continued love and support from so many. Grateful beyond words.

.home.

2010-08-06T13:49:00.002-04:00

The happy news to share is that Jack is HOME! Yesterday morning, Jordan called to tell me Jack's ANC went up to 215! Although not officially discharged at the time, we knew they would be coming home. So happy. It took all day, but finally, around 4:30, they left the hospital!

We are so grateful to be all together again. Thank you friends for the many many prayers said on our behalf. We surely feel the care and are lifted up by your petitions to our Father, who hears them all. It is humbling to realize the multitude of friends praying for us, and we are just undone by your care for us.

And on the topic of homes, I am not sure who out there is reading this blog, and who knows what else is going on in our lives besides Jack... but we are looking to move soon! We have the honor to be a part of a church plant in Arlington VA with our dear friend, Eric and Lisa, Josh and Ali, Phil and Jess, and so many new friends. Jordan will be working as a pastor on staff with the church, and we are so humbled to get to build a church with these people. We are so excited to live down there and be close to the people who have already served us so much.

Which is why we have been looking for a new place to rent in Arlington, VA, and are hoping to move sometime in September. We actually have been looking for a few weeks now, and have found a few promising homes. We are actually waiting now, to see if one we both liked, will accept our offer. We will find out on Sunday or Monday.

Nothing like waiting on the Lord for big things like this. These are the times, when I realize nothing I can do can sway a mans heart(potential landlord), but only the Lord can open the doors and lead us where we are to go. The owner of the home has another applicant they are reviewing, and then we are next. Only the Lord can direct us. We want His will. And we have come to learn that the decision about where we will live is ultimately in the hands of the Lord. "The king’s heart is a stream of water in the hand of the LORD; he turns it wherever he will." Proverbs 21:1

So we wait, again, on the Lord. I think God is trying to teach me something.... hopefully I will learn sooner than later! But the Lord is patient with me, and gently teaches me to rest and wait on him. His burden is light, and his grace is sufficient. Whether is be this home or another, we are confident that the Lord will provide for all our needs. Isn't it exciting knowing that we are waiting for and will soon see the plans of the Lord for us unfold?! I will keep you posted when we find out!

.hospital again.

2010-08-04T18:05:00.000-04:00

On Wednesday afternoon a week ago, Jack started feeling warm to me, and by the time he woke up from his afternoon nap he was just hot. He had a temperature of 101.1, so we knew we were headed into the hospital. Jordan took him in, and ended up in the ER until after midnight. They finally got admitted and into a room around 1 am. Because Jack is not 3 yet, they have a rule that the little ones have to sleep in "Cribs," which look a lot more like cages than anything else. We have faced this every time we are admitted. We have to beg and plead to get Jack a normal sized bed, and by the end of the second day, we got one.

Since then, we have been waiting each day to hear what Jack's counts were, since he was fever free and we could give him antibiotics from home, to see if we could go home or not. After the second day, they found he did have a Staph infection, and have been treating him with antibiotics since we got here, but also specific antibiotics to his infection. He seems to be feeling fine, and is adjusting to hospital life. His counts have to be 200 or greater to be released, and well, the timing of us coming was not optimal for that happening. He was still getting chemo when we were admitted, and chemo has it's fullest effect 7-10 days after is it given. The doctors have been saying they expect us to have to stay for a while... Not exactly the kind of prediction of length of stay you hope for.

In the meantime, I caught a nasty cold Saturday and have been sick since. This is somewhat problematic, when your child with whom you are supposed to be caring for has absolutely no defense against the germs you are now full of and sneezing around. So I have been a hand washing machine and wearing a mask when I am close to his face. I have been exercising as much restraint as I can to not kiss him, and my nose is raw from using paper towels as tissues! So far, he shows no signs of having caught anything from me, Praise the Lord!

Jordan and I have been doing shifts here, ranging from 12 hours, to overnight and all day... Really whatever we can do for each other to give the other rest. We have Dylan being passed around to friends who have graciously been watching him for us, and our dear friends Josh and Ali Deckard, have allowed me and Jordan and Dylan to take turns sleeping at their home pretty much since Thursday night, taking such good care of us. Jordan and my parents have been heroes and taken care of Tyler for us since last Wednesday as well, both sides playing with him, and taking him to the pool countless times. He has been well cared for, as has Dylan.

So now we just wait; wait for his ANC to go up, wait on the Lord, who controls every cell in his body, and rest in the fact that this is where God wants us to be right now. The longer we are here, the more my heart aches for the other families who are in similar, or worse situations. There is so much sorrow and grief and fear on this floor. We have such hope in the gospel, in Christ, in the Lord who is near to us even in extended trails. If we are here for this longer stay just to be an encouragement to any other family here, then it will be time well spent. I want to hug the other children here, I want to pray with the other moms. I am praying the Lord open doors to do that, but if that doesn't happen, I will be content to pray for them, knowing that it was the prayers of so many friends that brought comfort and peace to my soul many many times.

I was just thinking this morning, how I miss having my family all together, my children all with me at the same time. Something I have often taken for granted, this simple time when we are under the same roof, just being together, is what I so look forward to in a few days (we hope!). I feel so separated from my little family, Jordan and I are like ships passing by each other, we only have brief times together between the "shift changes" and even that is distracted by caring for Jack or trying to figure out the logistics of who is watching which child and where and when, ect. Thank goodness this is a short time we are now in, with an eventual end in sight. I cannot imagine this for weeks, and months; yet I know that even if that were the trial we were in, grace would abound, as it has here and now.

I think Jordan is sending me back home tonight, so I can get better. Then hopeful, I will be back here Friday, or Jack will be able to come home. I must brag about my husband for one moment. He has served our son, and me without complaint this entire time. While trying to find time to work, and yet constantly caring for Jack, sleeping here at the hospital almost every night, and being filled with faith that this is where God has us right now... Man I am a blessed woman to have such a steadfast and humble servant of a husband. He brings God much glory in the ways he has served us. I am so grateful for this man that God has given to me.

I hope the next update is one of us getting to go home! But for now, here are the stats on Jack:
WBC: 1.1
HbC: 8.4
Plt: 91
ANC: 154

Pray these numbers rise, and my cold clears up and we can pack our bags and head home!

.at the park.

2010-07-28T17:02:00.004-04:00

We went to the park as a family on Monday. We were hoping to get to ride the train at Wheaton Regional, but forgot to check and see if the massive storm we had on Sunday would hinder this outing. We packed up and headed out, only to find half the park covered in downed trees. BUT we had fun on the playground. Jack tires pretty easily, so it was not a long visit, but it was fun. I love my boys!

Jack wanted to put his hat on the seal. Apparently, the seal needed some shade.

I think Tyler was pointing to some trees that had fallen down. But this is not that foreign of a pose... Tyler trying to be the boss and Jack just being Jack.

Love how he is so content in the stroller, chewing on my key holder.

Love my babies!

.8 months.

2010-07-28T14:19:00.004-04:00

Where has the time gone?? I cannot believe this little squirt is already 8 months old! So much has happened developmentally with him the past two months! Here is a quick recap: He is crawling like crazy, he is pulling up and standing most of the time, he eats solids like there is no tomorrow, and he JUST started taking a bottle!! He has two big brothers to keep up with, so I guess that is why he is always on the move. No teeth yet, but some serious teething and fussiness going on here.

He also got a hair cut, around the same time we cut Jacks hair. He looks so different to me, but so adorable! He is still on the tiny side of things. He is in size 6-9 month clothes, but I think he could still fit into some 3-6 month stuff. He is so tiny, which makes it hard to believe he is already 8 months old.

Oh I love this little rascal.

.counts.

2010-07-13T09:31:00.002-04:00

Jack went in for his spinal tap yesterday. All went well. He did great. We did find out though that he did NOT make counts. His ANC is 250. As I said before, it has to be at least 1,000, so he has a lot of rebounding to do before we can proceed. So, we will check again on Friday to see if they rise. As much as the rest between cycles is welcome, we do not want to delay too much in getting this phase over with! Thanks for the prayers friends!

.a delay.

2010-07-10T15:30:00.000-04:00

I took Jack in yesterday to get his blood counts tested to see if he was up for beginning the next section of Delayed Intensification that was scheduled for Monday. Turns out he has an ear infection! That morning, he seemed to be fine, and then about an hour before we planned to go, he was grabbing his ear and crying more than normal. I suspected something, and I am so glad I took him in. So in addition to catching an ear infection before he got a fever, we found that he also does not have an ANC count anywhere near close to starting the next phase. His ANC has to be greater than or equal to 1,000 to begin. And well, his is around 300.

So we will be going in Monday for a chemo in his spine, but unless his counts go way up by Monday, we will be postponing the next phase as long as another week or just a few days - which ever scenario get his counts high enough to proceed.

While we were at the clinic yesterday, they went ahead and gave him IV antibiotics to treat the ear infection, and he already seems to be doing better with that. And each day he is sleeping a little better and is happier, which means less and less of the steroids are left in his system.

The past two weeks have been tough for Jack and tough on me as well. The second week on steroids really effected him emotionally. This time he was all tears and was very quick to get angry. There were moments where he was his joyful self, and he would have bursts of energy, but generally, all he wanted to do was watch movies and sit and eat. There a lot of hot dogs for breakfast, ramen noodles for a 9:30 am snack, mac n cheese for lunch and fishie cracker all day. He gained about 2 or 3 lbs in two weeks. So he has a round little face and belly again!

He also was not sleeping much these past two weeks. it got to be so bad at nights, that Jordan put a mat on the floor of the boys room, so that he could just be there all night with him and get as much sleep as possible. Jack wasn't taking naps, and would not go to bed until 11 or 12 at night, only to wake up again at 2, and 4 and 5 and want to start the day at 5:30 am with Toy Story and noodles! Part of this lack of sleeping was the steroids, the other part was that he has been having constant diarrhea for the past few weeks, and he would wake up in the middle of the night with tummy aches and needing diaper changes. Turns out he had gotten a bacteria called c-dif (which is very contagious). So he has been on some kind of antibiotic for the past few weeks and is still on them.

With all of this came the beginning of hair loss. Last Sunday morning, his hair began to fall out in larger chunks than we had seen before. I knew that it was all going to come out soon at this point. And we had almost been waiting for this day to come. We have been so blessed to have him look almost normal for 6 months of this treatment. By Tuesday morning, his hair was everywhere and we were all having scratchy throats from it being on everything. I would change his shirt and 40 hairs would fly out onto me, and he would have hair all over his collar and face. I knew it was time to cut it.

Tuesday morning, we cut what was left of his hair (which was still a good bit) and then buzzed it so it looked even. He seemed so much happier once we cut it. I gave Jordan a hair cut and Tyler and Dylan, so he wasn't the only one getting his hair cut short. He looks adorable, no surprise there. But it is still hard for me to see him bald. It is a reminder, as if we needed one, that he is sick. There are moments when I do not even see him as bald or think of the cancer when I look at him, I just see my sweet baby boy. Those moments are becoming more and more frequent as I get used to seeing him bald, and especially as the steroids come out of his system.

We have been spending most days at home. I just do not want to risk Jack getting sick. I know that living in a bubble is not good for anyone, but I also want to protect him as much I can and not put him in risks way needlessly. It is a fine line we walk, between being wise and cautious and seeking to trust the Lord and walk in faith. I do not feel like we are fearful, but more wanting to be controlling of all the circumstances around me, and I am realizing that only God is in complete control. So where wisdom and discernment come into that and faith, well that is a work in progress!

I have not been to church in 5 weeks, and have really missed worshiping the Lord as a congregation. The Lord has been sustaining us and giving me hope in Him. Yet it is hard. I hope to get to go to Cov Life tomorrow morning. But even if I do not get to go, He is near during this time. I have never felt the nearness of the Lord more acutely. It is amazing how his grace really practically sustains. Oh how I need Him daily.

We are going in on Monday for a spinal tap and to get counts. We will see what that tells us and when we can plan to move on to the next batch of chemo. Please pray the Lord protect Jack from illness during this time where he is susceptible. Dylan has a cough now and runny nose, so I am disinfecting the house like a crazy woman and trying to keep the boys from kissing the baby! They love their baby brother, but I do not want a silly cold to send us packing for the hospital if we can help it! I can do all I can, but God is ultimately in control, so we are asking the Lord to protect him! He is faithful, and no matter what this next few days/weeks look like, I know we can trust in him, our help in times of trouble.

Psalm 142:1-5

I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before him; before him I tell my trouble. When my spirit grows faint within me, it is you who know my way. I cry to you, O Lord; I say, "You are my refuge; my portion in the land of the living."

.evening at the park.

2010-07-08T23:27:00.003-04:00

We celebrated Jack being done with steroids this week by a trip to Rita's for ice cream and a little visit to a playground in our neighborhood on Tuesday. Although the effects of the steroids are just now beginning to show signs of wearing off, it was a happy day, to not have to give him those yucky meds anymore. We hate to see what they do to his poor body, and so Monday morning, when I told him he only had to take one med instead of 4, he was so happy! So we celebrated best we could!

Tyler was thrilled of course, any excuse to get ice cream is a joy to him. Pop-pop came with us for the ride and fun. We didn't stay at the playground long, as Jack was not feeling well, but we had fun and I took some pictures.

Thanks for all the prayers friends. I will post an update on how things are going and what to is ahead. We are so grateful for your support and cannot imagine walking through this time without the prayers of so many. God is meeting us in so many ways, and we are just amazed at the intimate love of God we see in so many small moments.

Jackers Update

2010-06-29T16:29:00.000-04:00

Just wanted to share with you all what is going on with Jack and how you can be praying for him/us. Yesterday was 14 of Delayed Intensification. We were a little nervous that he was going to have to be admitted, because he has had a low grade fever for previous 12 hours. Our bags were already packed when I left to take him to the clinic that morning, but were hopeful that he would be able to come home. When we got to the clinic, the fever was gone. God answers specific prayers specifically!

Late last week, Kelly (the girl who lives with us) had a high fever for two days, then Tyler got it on Saturday and Sunday. And so when Jack began to have a fever Sunday night, we both thought for sure we would be in the hospital today. Since it did not go above 100.1 so far, we are just watching it. Tyler's temp was 102.2, so God is answering many prayers to protect Jack from a high fever.

Another factor that would contribute to him having to go the hospital with a low grade fever, is that Jacks blood counts are extremely low. He is now neutropenic, as his ANC is below 500. (absolute nuetrophil count- the white cells that help fight infection. When this number is btwn 500- 1000, there is generally enough protective neutrphils to fight infection.Anything below 500 is considered nuetropenic). I do not have an exact number, because they had to send his blood sample to the main hospital for a read out, as the levels were so low, the machine they have there will not read it. His ANC has not been below 1,000 ever, so for it to be so low was a little jarring for me, but not unexpected. The nurse told me to expect them to go even lower by next week. His white blood count has never been below 4.5 and today it was 1.2.

So given his low blood counts and the low grade fevers, we are watching him closely. If he gets another fever, we have to take him in to Children's to be admitted for a 48-hour stay.

Also, he has a pretty big sore on his bottom, and changing his diaper has become extremely painful for him. So much so, that he is hoarse from screaming when we wipe his bottom. Please pray that his bottom heal up, that he stop having diarrhea, and that he not be fearful of pain every time we have to change his diaper. It has become an event to change him, dodging kicks and comforting screams.

He is also back on steroids this week. We really do not feel like we ever had a week off from last week from all the effects however. He has been up several times each night, and eating a lot more than usual. Both Jordan and I are pretty exhausted from being up so much in the nights, and are praying for renewed strength and grace for another week of this.

He is such a trooper. Although he is a bit pale, you would never know he has leukemia.Still has most of his hair, with just a few patches that are the beginnings of bald spots. He was jumping on our trampoline earlier, and dancing around. He does tire easily, and that is only to be expected to increase. But other than that, he looks great.

Thanks for the support, prayers and care. We are so grateful, and are so aware of our desperate need for the grace of God to sustain us during this time

.strawberries.

2010-06-27T18:31:00.004-04:00

True to the way I do things, I am about a month behind in posting pictures! I took the boys strawberry picking at Larriland with some friends, and it was HOT. It was also Memorial day weekend, and little did I know, that all of Maryland would also be out picking berries! I have never been there when it has been so crowded!

It took a little while to find parking, but once we got there, Tyler began to pick like a pro and Jack ate and ate like usual. We had a boxful in no time, which was good because we were all melting. Here are some pictures of our day!

.a good day.

2010-06-17T21:10:00.002-04:00

Just a quick update, to say that today was a better day. Although it seems Jack tires much more quickly and started the day with a hot dog for breakfast; he was not falling apart and we all had a great day. Thank you friends for the many prayers.

Tomorrow he goes in for the shot of chemo in his thigh at 11 and get some blood work done.

.6 months.

2010-06-16T22:51:00.004-04:00

Isn't he just delicious. Oh how I love him so. My sweet angel, my happy distraction, the one who forces me to sit down and stop and enjoy the precious moments that pass by too quickly, and gives the sweetest kisses and smiles. I am blessed.

.and so it begins...

2010-06-16T21:35:00.003-04:00

We officially have begun Delayed Intensification. I feel like I have to much to post on and catch up on, so here I go! So we had three weeks off between the end of the last phase and yesterday. Jack really seemed to enjoy himself, not having to go to the Dr. so frequently, but I dare say, I do not think he even noticed. The three weeks was more a break for me from the constant visits to the Dr's office.

In that three weeks, we had a visit to the beach with some friends (pictures coming soon), have been strawberry picking, saw my little sister graduate from University of MD, Dylan turned 6 months and started sitting up, Jordan completed the Pastors College at Sovereign Grace Ministries, we said goodbye to many dear friends, and started up going to our new church in Arlington VA. It has been busy and a very sweet time. A good distraction for me for what was ahead.

This past Monday, was supposed to be start of DI, where Jack was going to be getting a higher dose of chemo, some new meds, and back on steroids again. When we went in for his scheduled spinal tap and start of all this, he spiked a fever and was having difficulty breathing. The Dr. observed him for an hour, and decided to hold off on the spinal tap and make a decision about the need for him to be admitted. A few hours later, oxygen levels dropping and wheezing continuing, they decided to admit him for potential pneumonia and since he was dependant on the O2 machine, they decided he had to be transported via ambulance.

We were admitted into the ER at Children's Hospital around 330 and got taken up to a room in Oncology some time around 7. Jack has gotten to the age where he does not want to sit still and have an oxygen mask on for more than a few minutes, and certainly does not want to sit in a room all day. Needless to say, he was a handful to occupy and keep calm and happy. It was a long 12 hour day for me, and when I got home at 9:30 I crashed. Jordan stayed the night with Jack at Children's, and I was so grateful that he came to save me!

The next day it was determined that he did NOT have pneumonia and they were eager to start him on DI. He began chemo and steroids yesterday. I picked Jordan and Jack up around 5 after he got his chemo and other meds and headed home. Today was day 2 of DI and I have to say, he has not been as joyful and playful as usual. I have noticed things about his personality already change, an unfortunate side effect of the steroids. I wasn't expecting it so soon. I had forgotten that he was on double the dose he was on previously, and just thought it would take a little longer to see the effects of this.

So, yes, today was very hard for me. There was a moment in the middle of the day, when all three kids were screaming/crying, and I just felt so helpless. I wrestle with trying to discern how much of Jack being obstinate and angry is just a 2 year old not getting his way, or the steroids causing him to act out. Either way, it is not easy. I am praying that tomorrow, I am filled with more grace to love him patiently and wisdom on how to care for him.

We go in on Friday for a dose of chemo shot into his thigh, and then back again on Monday for the spinal tap and another dose of the chemo he got yesterday. He will be on steroids until Sunday. Little guy has lost two pounds the past few weeks. He hasn't really been up to eating much. I am not sure if the combination of steroids and this chemo will have him hungry, not hungry or what. But I am praying he keeps eating a little!

Even as all of this has been happening, we have been so aware of the many people praying for our Jack and our family. I cannot fully comprehend the fullness of the love of God for us to lay our family on so many hearts, that have served us so heroically. We are still being brought meals, which have been a tremendous blessing, even when we were at the hospital Monday night and Tuesday morning! We keep getting hats sent in the mail for our sweet boy, and each time I am undone that so many would faithfully carry us on their hearts.

I know this is meager, and by no means will ever adequately express the depth of our deep gratefulness.... but I thank you, I am filled with tears of gratefulness even as I type this, for all you friends have done on our behalf. You have been the Lord's hands and feet to us, and I am undone.

I have just begun to get pictures on our computer from the past month, so I hope to get some up on the blog soon. More updates to come as well. Thank you for the prayers friends!

.Family Day.

2010-05-28T13:05:00.000-04:00

A few weeks ago, we were given tickets to a Washington Nationals Baseball Game from an organization called Casey Cares. It was our first time going to the new park, and seeing the team play. It was perfect weather, and great seats, and ended up being a perfect day together. The boys actually watched some of the game and really enjoyed themselves. It was just so much fun and a sweet memory. Finally, I am posting pictures! I had Dylan in the baby carrier, so it was tricky taking pictures, so there are only a few, but happy times none the less.

.Jackers Update (long overdue).

2010-05-25T22:53:00.002-04:00

Oh man, am I way long overdue in writing out a Jack update. Please please forgive the laps. I have been wanting to write, and each time I try to carve out time, things just get in the way. Has it really been over a month since I have updated in how Jack is doing!? So sorry

Well, the good news is that this has been the best and most normal past month we have had with Jack since December. He has been loosing more and more weight from the steroids, he really looks great. He has been going in every 10 days for IV chemo, and his counts have stayed really good. He got a little low a week ago, but bounced right back.

We have had a few colds here, and everyone has had it, but answer to many prayers, Jack never had a fever and has been able to recover from all of it! Each visit they take his vitals, and it has been amazing to me to see that since November, he has grown 2 inches! He has been a joy to us and it has been so sweet to see and hear Tyler and he love on each other so much.

This past Monday was Jack's last day of the 3rd phase of his treatment. He started and ended this phase (which was 56 days long) with a spinal tap. So he had to be put under anesthesia for those. The rest of the visits were just chemo put in through his IV. He has been such a champ all these visits. Even the longer ones, when we are waiting around. This past spinal tap was by far the hardest visit for us.

We had a new anesthesiologist for this visit, and he gave Jack such a light dose of anesthesia, that almost immediately after they took the gas mask off, he woke up. He usually sleeps for 20 minutes after the procedure, and wakes up cheerful and ready to play (which is AMAZING). This time, by the time I got back to be with him, he was loopy, angry and crying uncontrollably. I honestly did not know what to do, as he has only one other time responded that way (and that was when he was on steroids).

Needless to say, I was glad when, an hour later, he returned to his normal self. So that ended the phase called Interim Maintenance #1. We repeat this phase in 2 months. We actually have a little break until the next phase comes, for which I am so so grateful. He starts the 4th phase, Delayed Intensification, on June 14th. This is going to be when things will take a sharp turn from bliss to difficult. He will be on steroids again for 7 days on, 7 days off, and then 7 days on again. He will also be getting a bunch of new chemo drugs that are higher doses and have combined side effects of dropping his counts to the bottom. We are trying to prepare for the worst, so to be pleasantly surprised at good responses to the chemo.

Right now, I am not tempted to be fearful of this phase coming. But we are 3 weeks from that time and in a very busy season, so there is much distraction. As it gets closer, I know my heart will be tempted to fear and to worry. But I am confident that the same God who has been near and holding us close, will be there then.

I am grateful this time is coming during the summer, and not during cold and flu season. I am grateful we get to go on a little family vacation before this new phase begins. I am so grateful to have had these past two months to get "our Jackers back." There is much to be grateful for.

This quote was recently shared with me, and oh how wonderfully refreshing and helpful, when even things are going well, life is still life interrupted! I want to view every spill on the carpet, every delay at the hospital, sleepless night, hungry crying baby, fussy boy, skinned knee, laundry to fold, dose of chemo, meds to be taken, kisses to be administered, and hugs to be had, and tears wiped away as the rich rich life God has given me.

"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths." Proverbs 3:5-6

.catepillars.

2010-05-16T08:19:00.000-04:00

These little creatures have invaded our backyard, and the boy could not be happier. Tyler had a jar full of them at one point, and both boys love letting them crawl all over them. One of the many ways boys are different from girls, which I am trying to teach them that mommy, is indeed a girl. I love seeing them play with them, in sweet innocence. They do not yet know how strong their little fingers can be, that shaking the jar can hurt the little bugs, the newness of little crawly things. It has been a wonder for them to discover, and I love to watch it all unfold.

.Soccer.

2010-05-10T22:00:00.000-04:00

There is something about your little boy playing on a little sports team that makes him feel all grown up! Although I know he is far from ALL grown up, he certainly is growing up fast right before my eyes. Tyler eats like there is no tomorrow recently, and seems to be hitting a little growth spurt. So, with all that energy he has, we decided that we wanted him to get to do something very special. All the attention and gifts that Jack gets can be tempting for him sometimes, and so when the opportunity to sign him up for this little soccer program came, we were so excited.

He was so thrilled when Jordan took him out to buy his very own soccer ball and shin guards. The first day of soccer, he woke up, and immediately put on the shin guards, and they stayed on until bedtime. He loves his coach (who is from England), and a bunch of his buddies are also doing the same program, which makes it even more fun. Here are some pictures of my big boy playing soccer!

.first real food.

2010-05-09T09:54:00.000-04:00

Well, we did it... we started solid food with Dylan! After weeks of him eying every bite that went into my mouth, I finally gave in that he seemed ready. The first go was a very messy thing, as you will see by my pictures. The past few times have gone a lot better! I love watching babies learn how to eat. Amazing how everything is so new to them. I just love all the faces he made during the first meal. Enjoy a little snap shot into the sweetness I get to see everyday!

.no words.

2010-05-07T09:39:00.001-04:00

Look what arrived on our doorstep Wednesday morning.... there really are no words for what I am thinking and feeling right now, but I am going to do my best to communicate how grateful we are. When we put up the initial blog post about hats for Jack, I do not think we expected all the lavish love and gifts we have received. We thought a few friends from different states would send hats for our little guy, and we would be able to point him back to their gifts as a reminder of the love of God for him.

Never could we have imaged just how many people would not only take the time to listen and read our blog, pray for us, and buy and ship hats. Never would I have thought... All of you out there, who have done these things, well, frankly, you have schooled me on what it is to love one another and to give so freely, and to carry the burden of another. Truly. Each hat we get, each note of prayer and encouragement, they point me to the Lord, and for that I am eternally grateful.

I have not taken nearly enough photos of all the hats, and I plan to take a picture of him in each of them, so if you do not see your hat yet, if will make it on here I promise! He has really loved all of the hats, and the gifts! We just bought a rack to hang them on in his room so he can see them and pick one each day to wear! We have been getting a steady stream of hats for the past month, and the pile has gotten quite large. After getting this package, that contained 30 hats, signed by many professional sports coaches and athletes, well, we have just been overwhelmed by kindness.

Sitting here next to me, I have hats from the Carolina Panthers Coach, John Fox; The Charlotte Checkers Basketball Team #'s 12, 11, 21, 20, 10, 9, 22, 26, 7, 24, 6, 47, 27, 00, 6, and I cannot read the other numbers!! The entire Toronto Blue Jays Baseball Team, Tampa Bay Sting Rays Elliot Johnson, Clemson Baseball Head Coach Jack Leggett, and that is just a few of the sports autographed hats. Then you add all the hats from friends home states and the signatures of those dear heroes.... well, you can get a clear picture of just how much we are feeling the generous love of so many!

Here are some pictures of Jack and Tyler opening the latest big box from a friend in North Carolina who headed up getting as many hats for Jack as she could! More updates on the way!

.wedded bliss.

2010-05-01T23:04:00.004-04:00

Maybe not bliss. Certainly not without our flaws. Yet here we stand, by the grace of God. More in love, better friends. No better match for me. It seems so long ago that we said our "i do" like we were just kids, without a clue as to all God had in store for us, yet ready and eager to begin our life together. Pastor CJ Mahaney gave a short message on our wedding day, reminding us of the truth about how faithful God is found in Psalm 121.

He reminded us that day, as it says in that whole passage, that we will always be able to look to the maker of heaven and earth for help in times of trouble. He will not let our foot be moved. He will keep our going out and our coming in.... you should read it. And he reminded us that the reason we can do this, is because our God will not move from his throne. We can always look to a faithful God.

And faithful he has been to us. I can honestly say, that as we become more like Him, the result is being more in love with each other. He has proven faithful to us time and time again. He has carried us through difficult trials we could not have withstood on our own. He has helped us overcome sin towards one another. He has taught us how to sacrificially love each other. And he has given us the sweet gift of joy and faith and trust towards one another. What a rich love and marriage we share, because of the wonderful unchanging love of the Father.

So, today, we mark 6 years of this wonderful adventure. I would not want to share it with another! As dorky as this is, I keep thinking of the chorus to the Shania Twain song, Your Still The One. The whole song is not all applicable, but the chorus rings true in my heart!

You're still the one I run to

The one that I belong to

You're the one I want for life

You're still the one that I love

The only one I dream of

You're still the one I kiss good night

Oh how I love to be your bride. Happy Anniversary!

.Whatever happened to Addison....

2010-04-24T17:51:00.004-04:00

I am often asked, what happened your sister's daughter?? A long overdue update... she is doing amazing! Her last appointment with her cardiologist said that she was doing perfectly well. She is getting bigger and bigger, and a joy to my sister. She came up to MD for a visit a few months ago, and I snapped a few pictures of her. So for those of you who have asked, here she is!

.Us.

2010-04-18T00:21:00.002-04:00

A week ago, we asked my sister-in-law, the very talented Megan Russell, at the very last minute, if she could come over and take a few pictures of our little family. With the third phase of Jack's treatment, we are seeing more and more hair come out each day, and I just wanted to have some good pictures of all of us together before it all came out. She was so willing to come, and took some amazing photos. Here is a slide show she made for us of the pictures she took.

.for jack. from megan russell on Vimeo.

.Phase 3.

2010-04-11T21:58:00.003-04:00

It is hard for me to believe that we are about to begin phase 3 of this whole crazy thing! Tomorrow marks the beginning of the 3 year mark that we can expect for Jack to be in treatment. So 3 years from tomorrow, he should, Lord willing, be done!!! Let the countdown begin!

This past phase he just finished, called Consolidation, has been easy compared to the first phase. I feel like we have finally gotten our Jackers back, after being so food obsessed the first phase. He is running around chasing his brother, talking all the time, singing and dancing, and overall just so happy. It has been so wonderful to have these days, even when he has had to undergo many procedures at the clinic.

So tomorrow we begin phase three, called Interim Maintenance 1. This phase will last 56 days, and we go in for treatments every 10 days. He has to have blood drawn prior to these visits, to ensure that his liver and kidney are functioning well with the increased dose of a certain Chemo he will be getting.

Jordan is going to Louisville KY tomorrow for 4 days, so we are on our own. I am praying that Jack does not experience many harsh side effects from this new treatment plan. He will be getting a chemo drug he has already gotten, but instead of it being put into his spine, it will be given to him in his IV.

Please pray that this week the boys all sleep well. I am very aware of my weakness and weariness when they are up at night and crazy all day! Also, please pray for minimal side effects during this new phase of treatment!

.hats, hats, hats.

2010-04-02T20:20:00.002-04:00

“Bless the Lord, and forget not all his benefits.” Psalm 103

(the hats Jack has been given so far)

There are certain ages that are optimal if someone is going to get cancer and undergo chemo, and Jack’s age is one of those. We are very grateful for this, and thank God that if he was to get cancer during his life that he got cancer when he did.

Since he is so young, he also has the added benefit of most likely not remembering the early and most intense phases of his treatment, and will hopefully be able to look back on his childhood without having needle pokes, chemotherapy rounds and no hair in the forefront of his mind! We are so grateful for this. I am consistently amazed at all he endures with little to no complaint.

However, we do want him to remember some things about this trial we are walking through. One of the things we do want him to remember though is the faithfulness of God to him through this time. I wouldn’t want him to be unaware of how people prayed for him, supported him, and how God sustained him throughout. It has truly been amazing and humbling to be carried by so many. We want him to see this multitude as an extension of the love of God for him and God's church in action. One of our friends suggested an idea to achieve this that Tali and I loved and wanted to do.

So here it is: we want people to send Jack hats. That’s right, hats.

This idea has a threefold purpose. One, is so that Jack can have a collection of hats to choose from once he loses his hair (which will probably happen in the next few months). Two, and most importantly, we want to have a physical reminder of God’s love for him, specifically through people that have prayed for him. We figured a tangible thing like a hat would be a great way for him to see the love of God in a very real way. Finally, we figured down the road we could donate these hats to leukemic societies for other little boys with cancer so they can benefit to (we will probably keep the teams we actually like though!).

You must know that there is absolutely not pressure to do this; we are overwhelmed simply to have people praying for us at all! We could not ask for a better gift from anyone than this. Your love and prayers for us will not be lessened in value in any way if you do not send a hat. We hope you hear that and know we are grateful beyond words for the lavish outpouring already demonstrated on our little family.

If you would like to participate, here are a couple ideas we had:

- The hats could be from whatever sport team you want (college teams would be ideal because they’re generally state schools and easily represent a location, but seriously, we’re not picky!), and we were thinking it would be great to be a team in your area so that Jack can see people are praying for him all over country.

- Feel free to send one on behalf of multiple families or people, this would also help in not getting 10 hats from the same team, and save money!

- You could write on the underside of the bill who it’s from, but it would probably good to not make this too obvious (ie. small letters in a corner), because we’ll eventually give them to other kids.

If this is something you’d like to do, email Tali (tkauflin@gmail.com) or me (jkauflin@gmail.com) and we’ll send you our address.

Thank you to everyone who is praying for our little boy, God is definitely hearing and blessing our prayers in so many ways!

Gratefully,

Jordan

.little trip to the ER.

2010-04-01T15:22:00.002-04:00

We just had a quick trip in and out of the ER the past two days. Jack spiked a fever yesterday of 101.2 and so, since whenever he has a fever we have to take him in to the hospital right away, we packed our bags and prepared to be admitted. Gratefully, his fever went down upon arrive at the ER last night. They went ahead and started him on antibiotics last night, and released him to come home. Jordan had taken Jack, and they got home around 10 pm. Little boy had a really hard time sleeping last night. Jordan and I were up at all hours, uncertain as to why he wouldn't sleep. When I was up with him at 5 am, I had the thought to bring him to our bed, or even start the day.... but he finally fell asleep at 5:30am. Thankfully, both Tyler and Dylan slept through all of that!

Jack, Dylan and I went to the ER again today to get his second dose of antibiotics. I spent the better part of the morning trying to get in touch with our Dr. or Nurse Practitioner to find out where I was to take him (either the clinic at shady grove or down town). After talking to several voice mails and people who were not very helpful, I finally got a hold of our NP and although it was her day off, called me from her home to explain everything we needed to know and do in detail. She is great and I feel very cared for by her.

By the time I got the go ahead, it was almost lunch time, and I wanted to try t be back in time for Jack t get a good nap. I should have known that would not happen at the ER. It took an hour to get in a room and another 45 minutes for a Dr. to come see us. We have been spoiled in the Oncology dept of Children's where they take SUCH good care of you. In any case, we were out of there is a little over 4 hours and Jack is now fast asleep in his bed. Dylan is a trooper and although there were a few moments when both boys were falling apart, there was also much grace.

For some reason, Jack has gotten very protective of his IV- we call them his "tubies".... he wont even let me look at them some times, so that makes it pretty difficult for the staff and me to clean it and give him his meds. I am hoping this is just a "phase" he is in for now, as he had gotten so good at letting me do a heparin push each day and cleaning the line. All in all, we will take two 4 hour visits to the ER over a 48 hour stay any day!

here are two pictures I took with my phone! Thank goodness for TV's and all his cars! It made the time pass pretty quickly!

.Steroids.

2010-03-26T23:03:00.005-04:00

.Steroids. A thing not to be trifled with. A thing we will not have to endure in large doses again. A thing that made my baby boy gain over 6lbs in a few short weeks. Oh man, are we grateful to be be finished with that segment of Jack's treatment.

I do not joke, when I say that the steroids changed our day to day in dramatic ways. I wanted to wait to put pictures up of the changes the meds caused in Jack, until I could show the progression of change. It really was quite dramatic. Each morning, I observed that he seemed bigger... which perplexed me that he could change so rapidly. My eyes could not believe it, but my back and arms certainly knew it was true. Jordan and I both were achy all of the time and our backs were just so sore from holding him.

It was truly heartbreaking to watch him unable to stop eating, knowing that each bite was making him bigger and more uncomfortable. The weight gain was primarily in his face and tummy, so his poor legs were just not used to holding so much weight. One day when I was giving him a bath, his legs began to tremble under the weight as he was standing for longer than usual. I kept having to tell myself that this would soon end, and we would get to a point in his treatment where I would be begging him to eat something!

He was such a trooper given the inability to control his appetite. God gave all of us such grace to love him in spite of the constant demands for something to eat. And there was so much grace on him, to not be angry and physically act out in anger , which is a common effect of the steroids. Even though he was up most of the night hungry and was feeling pretty miserable, he still gave us smiles and laughed at silly things. We are grateful for the moments of joy in the midst of this past month of difficulty.

Thankfully, since being home from the hospital 2 weeks ago (has it been that long already??), he has already lost almost 3lbs and is back to his crazy ways! It is a JOY to have our boy back. We honestly had forgotten just was a sweet and silly boy he truly is! More on that later.... here are some photos to prove just how drastic the change has been.

.on day 6.

.on day 14.

.on day 17.

.on day 21.

.on day 28.
(the last day he got steroids)

.on day 29.
(the biggest he got and with the fullest effects of the meds in him)

.on day 30.
(we were going HOME after a brief stay due to the cold he had caught)

.yesterday.

I know the change is shocking. He really looked different. He still does. It is hard to watch your child change so dramatically and not be able to help them. I think having walked through this brief season has given me more compassion for others. It has taught me to see beyond the appearance and just see the boy that I love so so much. I pray these lessons stay with me for the rest of my life. I truly feel like I have the privilege to lay my life down for Jack, and especially during this time, was able to lay it down in real and tangible ways. It has been good for my soul in so many ways. And now that we are on the other side of the first phase of treatment, I am all the more aware of the abundant things we have to be grateful for!

.Results and Re-Admission.

2010-03-12T22:39:00.003-05:00

I am so happy to share that the results from the bone marrow biopsy came back with the results we had hoped and prayed for! They said they found less than 0.1% Leukemic cells in his bone marrow!!! So this is such great news! The prognosis is a good one, and now we get to keep marching on into the next 3 years of making sure the Leukemia does not come back and he is fully in remission!

Thank you all so much for all the prayers said on our behalf! I also have the happy report of how last night and this morning went as well... So last night, we woke Jack up at 11:30 to feed him one last time before midnight. He was so sweet and groggy but ate a bunch of nuggets and french fries. We gave him a bottle and put him in bed at midnight and hoped for the best... well, he did not wake up again until 4:45... which was AMAZING for us and him! That was a long stretch for the little guy!

After that he cried for a while and Jordan tried distracting him with books and holding him for a while. Jordan wanted me to sleep as long as I could, and served heroically by making sure the monitor was off in our room and he was in the boys room with the door closed! By 5:30 am, I wanted to help, so we got him out of the room and put on a movie for him, where Jordan was able to be on the couch kind of sleeping with Jack, and I got to get back in bed until 6:15. He asked occasionally for food, but no more tears came after that.

And then, when we hit the road at 6:45, Jack sat quietly in his car seat watching Finding Nemo the WHOLE RIDE DOWN TO DC!!!! He smiled at me when I looked back, asked for a bottle a few times, but no major tears. Once we got to the hospital at 8:25, he was getting a bit grumpy and easily angered, so the blood work and the Dr.'s looking at him was not easy. When he finally get into the procedure room at 10:20, he was ready to be done with all the hosptial stuff eat some food.

The results of his blood work were concerning, as his white counts went from 8,000 last week to 50,000 this week. They were concerned that the Leukemia had relapsed or the other option was that he was fighting an infection. We were hoping it was the latter, and found out much later that indeed it was an infection he had. He has been admitted back into the hospital where he will stay for 48 hours and get antibiotics to fight whatever is going on in his body.

So this kinda made me chuckle--- As the day progressed, Jack seemed to be getting pretty uncomfortable, and he had not had a bowel movement all day, which was very unlike him- since he eats so much he is usually having them many many times a day. By the time we got into our room after 2:45, and hooked up to the machines, his heart rate was up in the high 170's and 180's... too high for him; and his breathing was pretty shallow and quick. So the nurse was thinking it was due to his tummy being so compacted and him being so uncomfortable. When you touched his tummy it really hurt him. So, they were all ready to give him some meds to help things move along, but I knew that if he just walked around a little he would eventually get things moving (as with most little kids, they like to go somewhere private to do their business). So around 6:00 I had him stand next to the bed and look at a book (he had been sitting all day and had barely walked at all), and 10 minutes later he had done his business and his heart rate dropped to 155!!! That made me and the nurse laugh! I am glad no more meds were needed!

So now, I am home with Dylan and going to bed, and Jordan is at the hospital with Jack and being taken care of by one of our favorite nurses we had last time we were there. So hopefully, we all will get some much needed rest tonight! Pictures coming one day!!!

Thanks again friends for all the prayers. We are so grateful for this happy news, and even though we have a 48 hour stay this weekend, we are grateful it was caught before he spiked a fever, that it is easily treatable, and we were already downtown! So many ways the Lord helped us through the day! We are so amazed at how He is in every detail and every cell function in Jacks body and our lives. Thanks for sharing this burden with us. We are so grateful.

.Please Pray.

2010-03-11T19:43:00.001-05:00

It is hard to believe it has been a month since we first heard the words Leukemia from the Doctors at Children's Hospital. Is it possible for the days to be both long and fast and the nights to seem like they will never end, and yet they are all too short? Many days, by the time is is 5:30 or 6, I feel like I am about to loose my mind! Jordan coming home is the sweetest sight for me, and the boys! I think it is a universal law, that dinner time, no matter the circumstances of life you are in, is just tricky if you have children! And this month has been no exception.

There are two reasons why I title this post as .Please Pray. One is that tonight is THE LONG ONE....after midnight, Jack is not allowed to eat until 10 or 11 am after his procedure. If you have been following the blog or talked to us, you know that this is no small feat. He has for the past 3 weeks been awake every 2 hours or so with several nights being every 20 minutes asking for food to eat- which he has eaten all of.

We are expecting this to be a long night, but we are also anticipating much grace from God to endure it with joy and faith. And for the provision of coffee tomorrow morning.

The second is, that the bone marrow biopsy being done tomorrow is VERY important. It will determine if Jack is "in remission" and determine if we can move into the next phase of treatment called Consolidation. The Dr.'s are looking to find less than 0.1% leukemic cells in his bone marrow.

The thing about cancer cells, is that they are wily... they like to hide... so even though he may or may not be "in remission" he still has to endure 3 years of Chemotherapy and many many more procedures, tests, and drugs put into his body to ensure that he does not relapse or find the cancer in another part of his body. I say all this so that if/when we get the news that the count is below 0.1%, that those who are praying understand that we are not done yet! Although this news will be good and worthy of much praise and joy, we know the road ahead is long and not without its share of bumps and hurdles.

So we are getting up tomorrow early and heading to the hospital around 7 am (into DC this time) and hoping to get little man in the OR by 9 am. We will see how it all goes, how quickly we get in, ect. We should hear a result about the bone marrow by the evening or Saturday morning. I will post when we get the results! Please pray the results are good and we can move forward! Please pray for tonight... maybe tonight he will just sleep sleep sleep.... I am not holding my breath for that one!!! But pray for grace for us tomorrow too on the ride and at the hospital before he goes under.... the long car ride with him crying and begging to eat is really hard on our hearts and we so want to give in and feed him!

A little humor in the midst of this.. last night, Jordan was making Jack some chicken nuggets in our toaster over. I heard him getting them out while I was feeding Dylan. Next thing I knew, Jordan got back into bed. I had a brief thought wondering what happened to the nuggets or if I had misheard... only to wake up to the strong smell of burnt chicken! He had fallen asleep while they cooked waking up 45 minutes later to some charred nuggets! This is the land we live in!! Oh my! Tonight is the last does of Steroids (unless they find more leukemic cells, in which case we would have another week of the steroids). Glad we can laugh at things like that, and even more glad that the house didn't catch on fire!

So please pray. And thank you for praying. We are so aware that the Lord hears and look forward to sharing with you tomorrow the many ways he not only answered but lavishly blessed and met us. Thank you dear friends.

.Needful Grace.

2010-03-09T20:30:00.003-05:00

A friend of mine sent me this quote from John MacDuff the other day, and it has richly blessed and encouraged me. Thank you Susan. I hope it encourages you as well.

"As your days, so shall your strength be."
—Deuteronomy 33:25

"God does not give grace until the hour of trial comes. But when it does come the amount of grace, and the nature of the special grace required is granted. My soul! do not dwell with painful apprehension on the future. Do not anticipate coming sorrows; perplexing yourself with the grace needed for future emergencies; tomorrow will bring its promised grace along with tomorrow's trials. God, wishing to keep His people humble, and dependent on Himself, gives not a stock of grace; He metes it out for every day's exigencies, that they may be constantly "traveling between their own emptiness and Christ's fullness"—their own weakness and Christ's strength. But when the exigency comes, you may safely trust an Almighty arm to bear you through! Is there now some "thorn in the flesh" sent to lacerate you? You may have been entreating the Lord for its removal. Your prayer has, doubtless, been heard and answered; but not in the way, perhaps, expected or desired by you. The "thorn" may still be left to goad, the trial may still be left to buffet; but "more grace" has been given to endure them. Oh! how often have His people thus been led to glory in their infirmities and triumph in their afflictions, seeing the power of Christ rests more abundantly upon them! The strength which the hour of trial brings, often makes the Christian a wonder to himself! --- John MacDuff

.13 weeks.

2010-03-07T09:51:00.000-05:00

In the midst of all that is going on in our lives right now, little Dylan boy is growing so fast. Tomorrow he will be 14 weeks old! He has been such a sweet joy to me during this time, and I have so enjoyed his many smiles and coos. I am amazed at what a good angel baby he is. God knew that during this trying time in your lives, we would need an angel and what a kind God to have given us one!

Dylan sleeps so well and is truly a happy baby. He is sleeping around 8 hours most nights, so at least when we are up at night it is only with one child! And he is just a sweet snuggler. I love love love to hold him. Looks like he is going to be our dark child, keeping brown/green eyes and dark hair... we will see! Here are a few pictures of him at 13 weeks that I took earlier last week.

.Perspective.

2010-03-02T09:36:00.003-05:00

Oh these men are so precious to me... I look at this picture and see the gifts God has so lavishly blessed me with, and cannot help but be amazed that God would be so kind to me. To have been given a man like Jordan as a husband, friend, leader, and love... there are no words. I am just so grateful. He is my match, he cares for me so well, he is exactly what the Lord knew I needed to face these trials we are currently in, and them man to lead our family back to the Cross time and time again. And when I see my dear sweet little boys, that we have the privilege to raise them, teach them about the gospel, to watch them grow and just enjoy the joy they bring to our lives... they are such gifts to us.

The past few days and nights, I have had several moments where I have been overwhelmed by the lavish care of God. My 30th birthday was a few days ago, and over the course of three days, my family and friends lavished encouragement and care and gifts on me. They have pointed me back to the ways God has been at work in my life, been generous with their time and money, and just gave me time to be alone and relax.... all have proven to be refreshing and oh so special.

I feel like during the past few weeks, I am constantly in need of re-evaluating my perspective. In the middle of the night, when I have gotten up 4 times to either change Jack's diaper or give him more food to eat, I can feel like things are, well, that I am about to fall apart. A few nights ago, I can't even remember what night it was now, Jack was up a LOT. He wakes up during the night due to the steroid he is on- it causes insomnia, mood swings and extreme appetite increase... so basically, the boy eats all day and night. That night, I had been up with him every 20-30 minutes from 2:30-5:30 am. Jordan and I had just put him back to bed, after he had a tear filled 30 minutes or so over us not understanding what he wanted to eat, when finally in the hall outside the boys room, I looked at him and was filled with dread and fear for nights to come... particularly the night when he has to fast from midnight till 9am for a biopsy procedure in a week.

In that moment, Jordan reminded me that we have ZERO grace for that night next week. We were not there yet. He reminded me to grasp hold of the grace that was abundant for us in that moment. And there it was, the grace, waiting for me to take hold and believe in the goodness of God. And so, with faith, I went to bed... again! When I woke up at 7:45 that morning, keeping what Jordan had said in mind, my perspective was one of faith, instead of fear.

But even then, the battle for faith can seem to be not only day by day, but sometimes more like hour by hour or minute by minute. When all three boys are crying at the same time, or I am covered in throw-up, or when we have gotten up for the 4th,5th, and 6th time to care for one of the kids... those are the moments I need a perspective change.

I keep having to go back to the fact that if I am to trust God in the midst of this, I have to embrace the boundaries that are around me, that they are in pleasant places. And those boundaries have me hemmed in very tightly- one day at a time. If I try to push beyond each day, to the unknown future, to the next 3 years of Jack's treatment plan, I am stepping outside the grace the Lord has given to me. I pray I keep him always before me.

Psalm 16
"Preserve me, O God, for in you I take refuge. I say to the LORD, "You are my Lord; I have no good apart from you." As for the saints in the land, they are the excellent ones, in whom is all my delight. The sorrows of those who run after another god shall multiply; their drink offerings of blood I will not pour out or take their names on my lips. The LORD is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance. I bless the LORD who gives me counsel; in the night also my heart instructs me. I have set the LORD always before me; because he is at my right hand, I shall not be shaken. Therefore my heart is glad, and my whole being rejoices; my flesh also dwells secure. For you will not abandon my soul to Sheol, or let your holy one see corruption. You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore."

I recently shared some prayer requests with a friend, who shared it with her small group, and they prayed. And the Lord answered that very night. We do indeed serve a Lord who not only is leaning forward to hear our requests, but is eager to answer and bless. With that in mind, here are some ways you can be praying for us:

- Jack has a sniffle/runny nose (he got from his big brother), so we are praying his body is able to fight it off and it does not grow into a fever or anything more serious that might send us packing back to the hospital.

- Jack has a hard time taking his medications each day, he gets really defiant and angry when we try to give them to him (somewhat understandable as he takes them a lot and is sick of them!), so that he would persevere through all that and he would have grace to take them joyfully!

- for rest for Jordan and I, even though we are not sleeping much, that when we sleep, it would be restoring sleep. Jack is up most of the night asking for food (the steroids he is on make him starving all day and all night)

-Grace for Jordan to accomplish much with his studies while he has much to do at home as well. That his capacity to learn would be increased and to be able to get much done in little time. Grace for his studies and much faith to know when he can stop studying too. (to those who do not know, Jordan is in Pastor's College at Sovereign Grace Ministries- more on that later)

-Patients for me and Jordan to care for the demands of the boys

-We go in for Chemo treatments each Friday, so we always need prayer that those go well.

-Next Friday is the big Bone Marrow Biopsy to see how the treatment is going so far. This will determine a lot for our treatment protocol, so we are praying they find less than 0.1% leukemic cells in that. In addition to that, he has to fast from midnight till the surgery at 9:30, and as you can imagine, since the boy is already eating all night, it is going to be a huge task to keep him sane and not screaming all night and all morning till he has the procedure done. We will need much grace for that!

Thank you friends for your prayers and love and support. We are so grateful for each of you.

What I'm grateful for

2010-02-27T20:05:00.005-05:00

This is Jordan, and I don't normally blog. I leave that to my wife who has better pictures and better thoughts to post. I guess I could if I really tried, but most of it would most likely be worthless anyway.

But I wanted to write to share how God has been working in our family through this time.

I've been keenly aware of two things during these weeks since we found out that our little boy has cancer.

The first happened the day after we found out. Tali and I were both exhausted and still getting the details of how bad his cancer was on that day. I went down to the cafeteria for lunch and I sat by myself trying to collect my thoughts. It was then that it hit me, "I really do trust God!." This may sound obvious, but for me in that moment, it gave me a profound gratefulness in my heart to the Lord. Because growing up in the church, around doctrine and godly men and women all the time, I had learned about the sovereignty of God and I had been inundated with truth about God, but I had never experienced a trial. My life has been incredibly easy. I've actually had the thought before that God must know that my faith is really weak because he has made my life so easy! And so, in the back of my mind, I've wondered how I would really respond if something really serious happened. Would all the things that I've learned go out the window? Is the truth I know just knowledge, or will it actually sustain me?

And so sitting in that cafeteria I realized that my faith is real. Was I sad? Yeah, definitely. Was there grief and wondering what the future would hold? Yep. But I wasn't tempted to doubt that God was in control. Or that he is good. Or that anything that might happen is part of his perfect, righteous, and gracious plan that is being worked out for my good and his glory.

What a comfort to know! James 1 says, "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." I have already seen how this trial is making me and Tali more steadfast in our faith. And as we walk through this, we are encouraged that God is working in us, helping us trust him through our weakness and frailty.

The second thing that I've been affected by is something that my wife has taught me. And it is to see each expression of care from other people as a picture and demonstration of God's extravagant love for us.

We've been overwhelmed by the support and care of so many people during this time. Tali and I both have been reduced to tears many times as people have expressed their concern, prayers, encouragement, heart-felt sorrow, and desire to serve us. All of this has been amazing and incredibly faith building.

But what Tali has reminded me of is to view these things not just as expressions of people's love for us (which they most certainly are), but to see them also as coming from our Sovereign Father who loves us. This has put things in an entirely new light, and made it even easier to trust our God through this. Rather than being aware of all the things we don't know, or the things that might go wrong, we want to spend our time meditating on God's character, and look for the mercies that are being demonstrated every day. Each email that we receive, and prayer that is lifted up for us, each time someone makes us a meal, or we receive encouragement from someone we don't even know, it's as if God is telling us, "you can trust me, look at how good I am!" This has been so encouraging and made us even more amazed at the grace of God and the love of our brothers and sisters in Christ!

Thankfully, even if all we got was bad news and we had no one supporting us, the character of our unchangeable, all-wise God would stay the same. This is ultimately where we're seeking to place our trust and hope. God's ways are not ours. But they are perfectly good.

How kind of God though, and how grateful we are, for the lavish grace he's already showing during this trial. And it's so comforting to know that his mercies are new every single morning!

So that's some of what the Lord is teaching me, and what I'm grateful for.

.being home.

2010-02-21T21:00:00.003-05:00

Since we got home on Wednesday afternoon, we enjoyed two really sweet days of recovery and rest with Jackson. Things were going really well both days, and even the nights were going well. After Jack got treatment on Friday, things started to be a little bumpier than before.

As I said in the previous post, he has been throwing-up a few times each day, and has not been feeling very well. He also has been having lots of yucky poops (sorry for the excessive details!) and so his little bottom is VERY raw. Poor little man is having a rough few days. Every time I put on protective gloves to clean is IV or change a diaper (the chemo comes out in his urine and is not good for us to touch), or bring his meds to him to take, he starts to cry. I know he will get more used to these things as time passes, but it is hard to hear him cry and even harder to convince him that what I am doing is for his good, especially when it hurts him a little.

Jordan and I both made it to church today(not at the same service), and it was so sweet to be able to sing to the Lord in corporate worship. There is something amazing that happens when you go through a trial, that brings worshiping God into a new focus. The words of the songs, suddenly have a deeper meaning, and ask you to think more thoughtfully about our God. Not that singing these songs pre-trial were lacking depth, or meaning.... but they somehow ring more true to me than before and I am more grateful that we can come together and sing our heart out to a God who hears!

Thank you again friends, for every email full of encouragement and prayers, for every comment on the blog and Facebook. I want to get back to each of you and thank you for the specific ways it has helped, but just cannot spend the time on the computer. Please hear me now and know that you are serving us so well by continually pointing us back to the gospel, to the word and to the hope we can find in a faithful God. You all are such blessings to us, and we are so grateful for every one of you.

So some promised pictures... I have not taken any since being home, since Jack has been sick, they would not be very nice ones! Here are a few from our last night at the hospital.

The night before we left, Jack was so hyper. He was jumping up an down on his bed, running around the room with him blankie tied around his neck like a cape, jumping on me and Jordan. It was a fun to watch him be so silly after being sick for so long. We are looking forward to him being like this again soon!

Dressed in regular clothes and ready to go!! Just waiting for the ok from our nurse and Dr!

.results.

2010-02-20T21:04:00.003-05:00

Last night around 8 pm, our oncologist who is head of our case called to tell us the results of Jack's bone marrow biopsy. She said it was good news and better than they could have hoped. They had been hoping to find less than 5% leukemic cells and when they did the test they found less than 1%! God is so good, and we are just amazed at his intimate care of our son.

She was so happy with how he has been responding to chemo, and we are thrilled to hear this report! We are so grateful for the many many prayers lifted up on our sons behalf and we have no doubt that God is hearing and answering those prayers. Thank you dear friends.

Something we were not expecting to happen, the nausea and vomiting has set in. Poor little buddy, last night he threw up 3 times over the course of the night and 1 time today. He sat around on the couch all day, just not feeling well and being pretty miserable. We were not expecting this, as he did not get sick at all with the first round of chemo he received while in the hospital.

We are praying this does not continue for too long, as the risk for him to become dehydrated would send us back to the hospital. He was pretty miserable today, so we are praying he be restored soon, and that the anti-nausea medicine we are giving him will take effect soon. Although, I think Jordan and I are quickly becoming pro's at throw-up clean up. Not something I really wanted to become proficient at!

Sweet boy has wanted nothing but mac n' cheese too. We should keep track of how many boxes he consumes this next month! Oh how we look forward to out boy feeling better soon.

Thank you again for the continued prayers. I will try to post some pictures tomorrow.

.Day 8.

2010-02-19T09:44:00.003-05:00

We are here at Children's Hospital again for Jackson's first day of outpatient chemo treatment. Poor little guy has not been allowed to eat since last night, and normally, this would not be the hardest thing for him, as he is generally easy to distract. But, on the steroids he is taking daily, he has an increased appetite. So much so, that he wants to eat all day long. Last night, at 3 am, he woke up starving, asking to eat. Yesterday morning, our first full day home, he asked for Mac n' Cheese for breakfast, and ate almost a whole box. So yeah, the fact that it is 10 am and he has note eaten in 12 hours is really really hard on him.

Shortly he will be going under general sedative for a bone marrow biopsy and a lumbar chemo treatment. After that, he will be able to eat. He will also be getting some chemo in his Broviac (central IV). We will know tomorrow some of the results of the bone marrow biopsy. Hopefully the results of this will be that there are less than 5% leukemic cells seen. This will mean that he is in remission. If they find more than that, they might have to add to his chemo regimen.

Being home has been wonderful. We have slept so much better, and he has been so happy to be there. We were welcomed home by a sign on the front door, many balloons and an immaculate home. Our dear friends spent much of Tuesday and Wednesday morning cleaning our home, preparing it for Jacks return. This was such an act of heroic service. For many reasons, this was one of the kindest things they could do for us!

The day before all of this happened- last Monday- we had just been snowed in with another family with two kids the same ages as ours. We had so much fun as families and the kids played together so well, we let them just be together in the various rooms of the house. They had spent most of the weekend, playing and making messes everywhere! So last Tuesday morning, I had planned to spend the day getting our home back in order-- but God had another plan. So when these dear friends came into our home to clean a few days ago, it truly was a disaster! I had not cleaned in days, had rushed out the door Tuesday to the Shady Grove Hospital, and had not been back in a week.... so yeah, I am keenly aware of just what a labor of love these servants lavished on us. Thank you friends. There are no words sufficient to express my deep gratefulness for all you did.

Letting Jack sleep through the night the past two nights, without the midnight and 4 am vital checks has been so refreshing for all of us. He slept 11 hours the first night home. We have not brought Tyler home yet, as we wanted Jack to adjust to the change first. We are bringing him home tonight and are so excited to be together again. Jordan spent the day with him yesterday and he is just so excited to be home. He has been staying with our dear friends, the Dufrins, and loving every minute of him time with them. God has been so faithful to protect him while there, as most of the family came down with the flu. All but Tyler and their oldest daughter (whom Tyler loves so so much) got sick!

Something that has been heavy on my heart is the fact that Jack's hair has begun to fall out already. I think I was not expecting this side effect to happen so soon. We noticed little pieces of blond hair on Jordan today while waiting at the hospital, and the tears immediately start to come when I think on this. Jordan thinks he is going to look cute bald... I just don't know. So for this weekend, the boys are gonna get hair cuts together. Not buzzed, just much shorter. I know this will be very emotional for me, but I also know that it is part of the process of getting my little boy healthy again.

Thanks again for the continued thoughts and prayers. We are hoping to hear happy news about the bone marrow biopsy today or tomorrow!

.coming home.

2010-02-16T13:18:00.003-05:00

Well, the past 24 hours have changed things again for us! The biggest update, is that we are being discharged tomorrow afternoon some time! The reason this is so crazy is that the Dr. who was on the floor yesterday, was telling us she wanted to keep us here for the entire first month of Jack's treatment. We had begun to think through how we could do this as a family and all the changes that would entail.... and then our nurse came in this morning and told us she was pretty certain we were going home, as early as today if we wanted!!

Let me tell you about the past three days that lead up to this decision of our doctor. Firstly, you should know that when Jack was diagnosed with Leukemia, he had a blast count in his blood of 37. That count is now at ZERO!!!! After the central line was put in on Thursday, they began his chemo treatments Friday. He had been having a fever up until that time. He has responded so well to the chemo, and other medications, that he has been fever free since. He is also no longer attached to his IV all of the time as well, but only when he has to get some meds!

When they took him off of the IV yesterday, it was like our little boy was back! He was bounding around the room, laughing, jumping (on the bed a little), and just overall so joyful. We walked the halls and just had a great day. We played with playdoh, cars, coloring, watch cars and few times... it was a sweet day.

He has also gotten quite used to being touched and looked at, although he still does not like it too much, he does not scream when they come in to take his blood pressure. He has even been able to sleep through a few of his middle of the night vital checks they have done, when his nurse has been particularly gentle.

Jack also received another dose of a different Chemo yesterday in his thigh. It is a shot called a Peg, which kids can have allergic reactions to, but sweetie pie boy did perfectly. Praise God! He was pretty upset about getting poked again, but after a few hugs and a new toy, he was back to his happy self again.

So the Dr. yesterday told us that she felt that she wanted to keep him here for an extended time and on antibiotics, even though she knew that his fever was due to the Leukemia and not an infection, it was a more conservative approach. She said that another Dr. might not agree with her, but that was her decision.

So we prepared ourselves to stay put for the next 3 weeks. Then this morning, our nurse told us they were taking him off of the antibiotic and we would be able to leave whenever we were ready! My mind started racing at this point! Not with fear, but with the millions of things we had wanted to get done before we come home to prep our home for him!

Thankfully, we are not getting kicked out today! They are spending much of today teaching us how to care for his Broviac (the tube inserted into his chest) and how to keep it clean each day and the meds I will need to use for this. They are also helping us to get a clearer picture of what the new "normal" is going to be. And there is an army of servants helping us ready our home for his return, so my mind is now at ease.

I think the biggest things that fill my mind during the day, are wondering when we can expect sickness, hair loss, and big side effects from the chemo. I think we are planning on cutting his thick hair short by the weekend, so that if it starts to come out sooner, we are more used to this look on him. My heart gets heavy at the thought of my bald baby, but I know that there will be grace for that time, as well as grace for any sickness we will face. Once we get home, we will be keeping a vigilant eye on any fevers or illness that might creep up, as a fever will send us back to the ER for antibiotics.

It amazes me that so much has happened in just 1 week. One week ago, we were on our way to the ER at Shady Grove and now we are in a much different place. I know that the Lord has been near to us each step of this past week, and I know I will need to be reminded that he is very near to us, as we walk through the next 3 years to full recovery for our boy. He has always been faithful and I know he will continue to prove his goodness to us in the night watches, in the sickness, in health and when we are weary.

Thank you again friends, for the prayers and care and practical needs being met. We are so grateful for all you have done and are doing.

some pictures of our jackers

2010-02-15T16:21:00.004-05:00

.Day by Day.

2010-02-13T11:49:00.002-05:00

"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. The Lord is my portion says my soul. Therefore I will hope in Him." Lamentations 3:22-24

This has been the cry of my heart these past few days. When thoughts of the future loom ahead and what this is going to look like in a week, month, year are ever present, we are seeking to take things one day at a time. And even as we take it one day at a time, each morning, we are faced with more of the unknown- what the day will bring, how Jack will be feeling, how he will respond to his meds, how he will respond to the staff here, when the nasty side-effects of chemo will begin... the list of unknowns are seemingly endless.

Not only is the thought of what the day will bring full of unknowns, but we are also very tired, as we are not sleeping much at night and so we are tempted to view the day through the filter of weariness. So yes, it is a fight each morning, to not only even want to wake up, but serve our boy joyfully and faithfully.

And yet, as God's word promises, there have been new mercies each morning. Physically, it has been hard to rise, but there waiting for us has been an abundance of grace and joy. It really is amazing. I do not think I know how to fully explain it. Even after going to bed at 1 am, being awoken at 4 am for his medicine dosage to fall asleep at 5am, and then up again at 7:30 am, feeding Dylan some point in there (although I cannot remember when that was!!!) ... I am fully awake and happy to be here with my boy! God's grace is so amazing!

He even has blessed us with little things like our friend, Jenne, who works on this floor bringing us Starbucks at 7 and her sister sending in breakfast food in with her for us! Amazing.

An update on Jackers, he got his first round of Chemo treatment yesterday. As I watched them inject this drug into his IV, it hit me that this was really happening. My child was getting chemotherapy. Something I never dreamed would be happening to one of my children. And again, the reality of what is to come hit me, as he was dry heaving for a few moments this morning. Yesterday was a tough day for the little guy, as he began the treatment and received a few meds that he will be continuing to get over the next month. He has been "hurt" so many times by all the needle pricks in the first few days here, so that now, whenever a nurse or doctor comes to take a look at him, he starts to cry.

Today, he seems to be doing a lot better though. Already, his glands are not as swollen as they were just 5 days ago! He is not limping anymore!!! Finally, after a month of him having a limp, he is walking with ease! Oh how I love to see this. He is also much more joyful and seems to be more of the Jackson we know and love. We took a walk down to the play room and he has been eating a little better today than the past few days. Sadly, one of the side effects of one of his meds, is extreme mood swings, which we are already seeing some of.

It is funny to me, how doing simple things makes all this feel a little bit normal... the other night, I had done some laundry here and folding it made our little room here feel more like home. Feeding him, changing diapers, and playing cars with him also add to the normalcy of what is a very different set of circumstances than we had ever thought to experience.

Anyhow, that's the update for now. We cannot thank you all enough for the lavish outpouring of support you are giving us. We truly are being carried by you and are refreshed by each and every offering of prayer, verses and passages of encouragement, and support. Please do not think that by simply adding your name to the list of many who are praying, that this is somehow not a blessing for us to hear! It really just humbles us that God would place our little family on so many hearts. You all are truly being an example to us of what it is to be a church family and to bear each others burdens up to Christ. We are so grateful.

Diagnosis and Grace

2010-02-11T10:57:00.003-05:00

Friends-

"God is our refuge and strength, a very present help in trouble" Psalm46:1

Much has happened since I last wrote only 2 short days ago. We found out much later that night a new diagnosis, that our sweet boy has leukemia. We were not completely shocked but we were certainly shaken. After I posted about what was going on at Shady Grove, and we waited a bit more for some results, and we were informed that we needed to take Jack to Children's Hospital in DC for further testing with specialists. This raised our concern level quite high as you can imagine, that even with a snow storm coming, we were needing to make this trip.

I began to google the combination of things they had found in the tests done on our little boy (swollen spleen, low platelet count, swollen lymph nodes) and came up options that were NOT Lyme disease, although a few of these symptoms did also look like Lyme. As a result of the google quest, I came across some concerning outcomes, one of the most concerning of these was a type of cancer called Lymphoma.

With this knowledge in hand, we began the drive down to Bethesda, where my dad graciously offered for us to take his 4-wheel drive into the city. This served us so well! The roads were awful, and it might have taken quite a bit longer to make the drive without it. As we drove, I was able to speak with Betsy Ricucci and Jordan and I spoke about how we can fight fear that was looming about and cry out to the Lord during this time. We entered the ER of Children's at 11:20pm and sought to just wait for things to be revealed and not fear the unknown.

Our poor little guy was subject to another battery of blood tests and a urine test. The waiting for the results was long and Jack did not sleep at all, but asked to watch Cars over and over and over. They put another IV in his other hand (he had one in his left hand from Shady Grove) to have a new sterile line. Poor buddy, it just broke our hearts to see him in pain. Around 2:30 am, two doctors, one nurse, and a social worker came in to share with us the news, that they had found cancer blasts in his blood that looked like Leukemia. After asking a few questions, and letting the news sink in, the staff left us, and we wept. Our swwet friend Lisa had come and kept Dylan for us while we cried our hearts out to God and hugged our tired and sick boy.

Many tears have been shed since this initial news was shared, yet in the midst of this deep sadness, we are not without hope and we are not despairing. God has been near, and by His grace, we have not been tempted to be angry or doubt His good plan for all of us in this. My husband has lead me heroically. Through many tears and kind words, he has consistently pointed me back to our unchanging God to whom we can trust, rest in, and find peace in.

So Wednesday and today, little buddy has had two surgeries. One to take a sample from his bone marrow to determine the exact type of cancer he has, and the second to take a sample from his spinal fluid to see if it had progressed to his Central Nervous System and to put an internal IV in his chest called a Broviac (this will lessen the amount of needle pricks he will have to endure to a minimum). We found out the results of these tests today and as it turns out Jack has acute lymphocytic leukemia (ALL), and it has NOT gotten into his CNS. He is a very low risk patient at this point.

This is good news after all. They have told us time and time again that if he was to have a cancer, this is the best option, as it is the easiest to treat with very high cure rates (up in the 90%). We spoke with the Oncologists today about his treatment, which will begin tomorrow. Most likely we will be here in the hospital for 2 weeks, maybe 3. The staff we have had have been amazing. The Lord has been so kind to us in allowing us to be so well cared for during this extreme trial. After this initial round of treatment, we will go home, and care for him as his body responds to the chemo and help him heal. We will likely be back at the hosptial 1-2 times a week for several months for additional treatments as well, but these will all be outpatient and we will be able to go home that same day.

There have been so many sweet instances where we have seen the intimate love of the Father, by placing people around us to care for us so well, during each step of this time. An example of this was the first day here, after no sleep at all, I turned the corner and saw a friend who not only works at the hospital, but in the wing we are in. When I saw here, I broke into tears, and felt the love of the Father on me by placing her here. She has been a great comfort to me and has helped us in so many ways. We have also had amazing nurses, who have been more than accommodating to us, given that we have a baby in the room and it really is not allowed. They have allowed Jack to sleep in a full sized bed, instead of the standard crib (that truly looks like a cage), and when we thought his blankie had been lost in the laundry in an accidental grab, they went down to the laundry shoots and found it for us. Amazing kindness from so many.

We are also just undone at the outpouring of care from so many. Never in my life have I experienced such love and care and support from so many. Each email we have gotten has not only lifted our eyes to the Father and encouraged our souls, but have filled us with gratefulness and awe at the all God has done and is going to do. Friends, we cannot say thank you enough for all you have said and are doing by praying for us.

Needless to say, this has been an emotional roller coaster for us. There have been times of much crying and times of quiet peace. We are experiencing the "peace that passes understanding" in a keen way. The outpouring of care has truly left us speechless and has really been such an example to us of what it is to "weep when others weep."

Thank you again and again for your care as we walk through this trial. Our sweet boy has already won the hearts of all his nurses, as even while he is in pain and after they stick him with needles, he says "thank you" in his soft sweet voice. He has been such a trooper and we are so aware of God sustaining his little body.

I am not sure how often I will be updating, but will try to keep you informed as things progress. Chemo starts tomorrow, so any prayers would be grateful for the little guy. We love you and cannot thank God enough for your care for us during this time.

at the hospital

2010-02-09T18:50:00.002-05:00

I have long been meaning to update about the health of our family, but as you will read, we have not had much time for the blog. As I write, I am sitting in the Pediatric Emergency Room, waiting for Jack to return from getting a sonogram done on his abdomen.

For the past month, he has been pretty sick, with ear infections, and various other ailments. The issues became pressing, when we noticed his glands in his groin area swollen and he was limping. This quickly escalated to where he could no longer walk at all. We took him for blood work, and they found that he had gotten Lyme Disease. We thought we had caught it in the early stages, and so the Dr. began a cycle of amoxicillin. That was 3 weeks ago. His glands all over his body have continued to swell, and he has been pretty much miserable.

So here we are today, to see if this is all Lyme Disease, or if something else is causing all of this. He has been a trooper and has put up with a lot of poking and prodding.

We are so aware of our weakness in all of this. We are drawing near to the Lord, knowing that he is not only intimately aware of all the details of the situation, but every cell in Jacks body. We are drawing great comfort and faith in the knowledge that the Lord is worthy of trust and faithful.

Isaiah 40:27-31

Why do you say, O Jacob, and speak, O Israel, "My way is hidden from the LORD, and my right is disregarded by my God"? Have you not known? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.

Updates will come as I can. Dylan is here with us, and he is being an angel baby. I am not sure how long I will be able to stay with the snow storm upon us. The plan for now was for Jordan to stay the night with him. I would like to stay as well, but a lot will be determined by the room he is given, assuming he is going to be admitted. We are really just going to wait and see what happens after these tests. Thank you friends for the prayers for our little man.