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:
Red blood cells 8.2
White blood cells 1.0
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.
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
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
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!
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.
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.
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:
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
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.
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.
“Through floods and flames, if Jesus lead,
I'll follow where he goes.”
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.