Today was another intense day of immunotherapy with Esther still battling stomach pain and holding fluids. But with her red blood count down to 7.4 this morning and the extra kilo of fluids in her system, she was able to get a blood transfusion around mid day. But as the chimeric antibody was started up again and we waited for the transfusion to take effect our nurse had to keep an eye on her lungs and breathing with all that extra fluid. By the evening, we gave her one drug to help her pee and she proceed to pee almost a whole liter in about 2 hrs, probably the most she's peed all week. You have to understand that her weight has been up to 15.2kg even though she came in at 14.3kg and she's barely eaten anything this week!
The antibody infusion should finish in the middle of the night tonight and then the pain and reaction meds will get drawn down heading into the morning. The one hang up we could have for her getting discharged is her O2 levels and her breathing. It's better this evening after peeing so much but it may not recover so quickly, we'll just have to see and maybe get a chest X-ray if she's not progressing. Pray that we can get home by tomorrow evening or we might be here through the weekend with all the snow that is expected tomorrow night through all day Saturday! Pray that her stomach recovers quickly as well. She probably needs to poop more again and it's been the main source of her pain all week between the antibodies and the pain meds.
Sam and I are both exhausted. Sam is even more exhausted than I am between caring for our older 4, packing up at Brent's Place, and then trying to get home to make sure things are ready for Esther (this all after doing a ton of cleaning at home last weekend!). I think I'm worn out by not sleeping well all week and the intensity of this treatment that I've tried to help Esther get through. Tomorrow night we could all be home for the first time since December 10th but I'm just trusting God to sustain us right now and that Esther recovers quickly from a brutal week of pain, grogginess, labored breathing, swelling, and simply a lot more than she likely anticipated.
The endurance God has given Esther still blows me away (though I'm learning she probably gets it from her mom!). Even at her worst she has been extremely trusting and compliant. I don't think I'd have her attitude with the constant pain she's been in all week and not even being able to understand it all. Esther has been very honest with how she's been feeling and hasn't smiled much but hasn't despaired or really grumbled.
Honestly, I'm not excited about the rest of this treatment over the next 4 months. I know it's powerfully effective. I know it gives Esther a significant edge in her fight again Neuroblastoma that kids even 5 years ago didn't have. I know the side effects should subside within a day or so once the week ends. But, man, this is worse than chemo transfusion or neutropenic weeks (though probably not worse than transplant...)!
I am very grateful though. We will soon be home. Esther will be running around our house with her siblings. I will see my wife more than just like passing ships. And our hope, as best we can, is in Jesus. Circumstances are all over the map and change daily and who knows what God has for us next. But He is good and unchanging and still sovereign. He has good for us, even if that means more immunotherapy for our little one.
For I know the plans I have for you, declares The Lord, plans for welfare and not for evil, to give you a future and a hope. (Jeremiah 29:11)
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Our family continues to pray for Esther and your family. I hope the morning light brings much hope for a homecoming for your family.
ReplyDeleteWe love your family and are praying. Thank God you get to be home together, I am sure that has been soo hard on top of every other terrible thing you have endured. But you have endured by God's grace and I am so thankful for your example and courage and perseverance.
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