Nick had his port for his central IV line removed and replaced on Wednesday, Nov 9. The surgery went very well. There were no complications! Praise God! The surgeon said the line coming out was “sticky”, but it did not break this time. Praise God!
The placement of the new line went fine. There weren’t any complications with that one either. Praise God!
We were able to be discharged from the hospital late Wednesday afternoon. The kids and I spent the night at a hotel near the hospital. Nick did very well through the night Wednesday night. He only needed Tylenol for pain.
We returned to Children’s Hospital on Thursday morning, Nov 10, for chemo, IVIG and a checkup with the oncologist.
The checkup was fine. Nick received his IVIG and chemo.
After much discussion with Nick and the oncologist, Nick has decided to continue on with the current chemo regimen. The “new” chemo has been stopped. The oncologist thinks that it did work in reducing the tumors, but it didn’t make enough difference recently to keep going with it. The doctor also thinks that the enormous amounts of steroids Nick needed while taking the “new” chemo had an impact on the tumors shrinking. The problem with giving that large amount of steroids is the adverse affect on the body...the reason the kidney and blood pressure problems showed up seemingly out of no where.
The chemo that Nick has decided to continue on with is the same chemo that he has been receiving for almost a year now. While it doesn’t appear to be shrinking the tumors anymore, the hope is that it will keep the tumors from growing (aka stable disease). A side benefit would be any shrinkage.
Continuing on with this chemo has very little risk to Nick’s kidneys and the rest of his body. The biggest challenge that we could be facing is if the tumors grow while Nick is on the chemo. That would mean that the cancer has gotten “smart” to the chemo and it won’t work at all anymore. It would also mean that particular chemo combination would no longer be available for use. Once that point is reached, it will be necessary to reevaluate everything.
I will be quite honest and say that I don’t know what changed Nick’s mind. In the conversations he and I have had during the last three weeks, he had complete understanding and even acceptance of the choices he made. The change of heart and mind came Wednesday evening as we were pulling into the hotel. So, we will go forward with Nick’s wishes and let God be our guide.
Another answered prayer came when Nick’s oncologist told us that he is willing to do whatever Nick wants. The doctor has had a very difficult time coming to terms with what Nick wants. The doctor is finally listening to Nick and I believe looking at Nick as being mature enough to make informed decisions.
I finally don’t feel like I am butting my head against a brick wall trying to advocate for Nick.
Now, if I can just get this mess straightened out with Nick’s insurance not paying for any of the “new” chemo that he was given. Please pray for this to be resolved. Right now, Children’s Hospital is billing me for $90,000.00. Yes. That is the correct number of zeros. I’ve done everything I can do from my end. It’s all in the hands of God, the hospital and BCBS. My prayer is that I won’t be held responsible for this. I don’t have 90 grand, and I don’t have room in my budget for a payment plan either.
So, the plan is for Nick to spend the next few days recovering from surgery and chemo. Hopefully, he will be well enough to return to school on Monday.
We will return to Birmingham on Wednesday, Nov 30, for another chemo treatment and more IVIG.
Please continue to lift us up in prayer. I don’t know what specifically to ask for in prayer other than what I’ve mentioned. I know that my prayers are mainly focused on God’s will being done. Please pray as God leads you.
As always, we remain FIRMLY...
In HIS Grip,
Kristy Baxley
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