Welcome

Thank you so much for taking the time to visit our family blog. This may be your first visit here, or you may be a friend from across the globe, or family that we have just seen. Who ever you may be, thanks for taking the time to read about our little family, and all we are learning on this adventure the Lord has called us to live! Here you will find, the random thoughts, funny stories, prayer requests, and the journey our family and Jack is on with his battle with Leukemia.

.merry christmas.

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

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answered prayer and trust

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.


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treatment day

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.

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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

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!

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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?

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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.

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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.

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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

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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!!


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.read this today.

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"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.

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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.


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.Simple Faith.

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"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.

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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.

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.

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.

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.

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

17 When 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.

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

.counts.

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

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.


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.

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.

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

Its time for a little Jack Update!

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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.

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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.

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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.

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.Tyler turns 5.

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.




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