Thursday, November 13, 2008
After a week of rest from all chemo this week to allow CJ's blood counts to come back up we are back at the hospital for a scheduled overnight admission. Due to the decision that one of us needs to be with our other kids whenever possible, Chris was staying home with them today. CJ and daddy had a difficult time separating from each other this morning as they have been spending a lot of time together lately. Daddy has been sleeping in CJ's room each night because our 6 year old Brett has had a cold and we wanted to keep them a little distanced. This has allowed Chris and CJ to talk and have some special time together. It also allowed CJ the opportunity to ask his dad a serious question. CJ was seemingly sad last night and Chris asked him what was wrong. CJ said he had a question but did not think daddy had the answer. Chris pursued it and eventually CJ said, "Why do you think I got cancer daddy?" CJ was right, his daddy did not have an answer but through tears he encouraged CJ that God did have an answer and we could trust God with that answer even if we don't know what it is yet.
Sometimes we don't realize CJ is thinking about it as much as he is until he shares what he is thinking with us. The other day he told me that he wondered why God would allow a boy who loves to be outside and loves to play sports so much to get cancer instead of a boy who loves to be inside and play video games. Little insights like that show us just how much he actually ponders the whole situation. Thankfully, he always seems to ponder everything in light of God's Sovereignty and seems to grasp that concept fully. Honestly, even if he never gets an answer as to 'why' this happened but he grasps the Sovereignty of God, he will be just fine.
Anyway, as I was saying, these two kindred hearts had a hard time separating this morning but once I pried them away from each other, CJ and I were eventually off and on our way. CJ was scheduled to have a spinal tap to check his spinal fluids and a chemo injection into the spine. My mother eventually came to see us and was with me during the spinal. She got such a kick out of CJ as he was put to sleep. He looked straight at her and gave her a wink not a split second before his eyes closed. It was priceless. This was my 4th spinal tap so I am getting used to seeing CJ put to sleep and immediately seeming fragile and small once they curl him up on his side and prepare his back for the needle. But having my mother in the room for the first time allowed me to see it again through fresh eyes and reminded me of all the apprehension I felt the first time I stood and watched this procedure done to my child. Seeing how tense she was made me realize how relaxed I was in comparison and I thought...I can't believe you actually get used to this after a while. I bowed my head to pray and felt my mom searching for my hand so I held hers as I prayed for CJ. I raised my head to watch CJ as I prayed and then the doctor said, "It's okay to look grandma, see the spinal fluids look clear." My mom hesitantly raised her head and watched the remainder of the procedure through squinted eyes. This reminded me of how I squinted the first time I watched this procedure as if somehow I could take in less of what was happening if I squinted. CJ slept off the remainder of the medicine as we stood over him saying how thankful we are for how well he is doing. When he woke up I said, "Hey there, you are finally awake." And he said, "I've been awake, I was just too tired to open my eyes."
He is receiving chemo through his port tonight and tomorrow. He will be released sometime tomorrow afternoon(Friday) and continue on chemo via home health for the weekend followed by another round of home health chemo in a week for four more days. At that time, we will be at the end of phase 2 and entering into phase three. Initially, we were told CJ would have high doses of a chemo drug called Methotrexate during phase four. It was going to be such a strong dose that it would require a counter drug to salvage good cells and also require 3-4 night stays each time it would be administered. This would have been repeated four times over 50 days. Today the doctor explained to me that we will be placed on a new arm for this phase of CJ's treatment. I won't go into clinical trials and studies and the many arms of those studies at this time because it is an overwhelming amount of information. But I will say we are extremely grateful for those studies and all the children and families who were in them in order to determine what treatment would be best for future patients. When a child is part of a clinical trial, that child does not necessarily benefit from the study being done but the children who come along in the future surely do. CJ's treatment would definitely fall into that category as one who is benefiting from those who have gone before us in these treatments. We are extremely thankful for that!
What does this have to do with CJ? Well, we were told today that studies show that the high dose Methotrexate children did not fare any better than the gradually increased dosed children. All Leukemia kids have already been switched over to this new protocol for this phase of their treatment. CJ"s doctor recommended that although CJ is Lymphoma he should be too. What difference does this all make? Well, thanks to this change in protocol we will no longer be in a phase that requires the high dose and therefore will not require the countering medicine or the 3-4 night stays at the hospital to administer it. He will now receive it outpatient once every ten days for 50 days and be able to go home that same day and recover at home in between doses. His dose will gradually increase as his counts and health allows. This is extremely good news for our family as it reduces the amount of time spent in the hospital and that we are all separated.
Unfortunately, even after the week of rest to allow CJ's blood counts to come back up, his hemoglobins were still borderline. They will check them tomorrow morning and if they have not come up he may need a transfusion before he is released. We are praying for adequate counts and yet thankful for the means of replenishment available to him through transfusion if necessary. We are praying for sustained counts and yet prepared hearts for whatever is best for CJs long term health. We are also asking for prayer for CJ's quick recovery to a head cold he has come down with. We are asking that it not interfere with his treatment and that his body be able to recover quickly from the cold without complications.
Thank you for your continued support of our family and most importantly your prayers for CJ. We are so thankful this blog allows us to involve you in his treatment as many of you have told us you feel like you are able to go through this with our family because of the blog. We are extremely thankful for this avenue of communication but most importantly that it allows us to immediately get our specific prayer requests out to all of you who are battling through this with us in prayer!
FURTHER UPDATE: CJ is just finishing up his blood transfusion and already feeling more refreshed. He received it well with no complications or reactions. We are grateful for this means of replenishment and for whoever the donor is that provided this blood. We are looking forward to going home within a few hours.
Posted by Break the Mold at 5:13 PM