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.

.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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