****Warning**** Contains lots of information
Both kids and I were in Birmingham this week for lots of tests, checkups, IVIG and chemo.
We were originally scheduled to go last week, but due to some conflicts, we pushed things out a week. It became clear that everything could not be completed in one day, so we made it a two day trip.
On Tuesday, Oct 18, we met with the kidney specialist (Dr. F). He is a wonderful doctor. I really like him and his approach to Nick’s unique health situation. Dr. F has extensive knowledge in dealing with kids who not only have kidney problems, but more specifically kids who are transplant patients that have kidney problems. He answered 95% of my questions before I even asked them. He told us that 80% of liver transplant recipients develop kidney problems ten years after the transplant. Nick is 15 years post transplant.
Dr. F is not surprised that Nick has begun to have blood pressure problems. He said that Nick would likely be developing problems without all of his other medical issues. Once you factor in ALL of the other health issues Nick has and has had, it is a perfect recipe for kidney issues.
Right now, the issue is Nick’s blood pressure. Dr. F ran a bunch of blood tests that check for several different enzymes and proteins in Nick’s blood. These different things give Dr. F an idea about how well Nick’s kidneys are functioning. We don’t have the results back yet. The most basic kidney function tests have been routinely checked for years with Nick. Those results are within normal ranges. The tests that Dr. F is looking for are specific measures of enzymes and proteins the body only releases when there are kidney problems present. Nick’s blood pressure medication has been changed in anticipation of the results showing that Nick’s kidneys are releasing some version of these proteins or enzymes.
So, what does all this mean? Basically it means that Nick’s kidneys are beat up from all of the years of antibiotics, chemo, illnesses, transplant meds, steroids, surgeries, etc. Everything has a cumulative effect on the kidneys. Dr. F said that our plan of action now is to control the problems that come up and protect the remaining kidney function. His belief is that Nick will continue to have kidney problems. We will try to control what happens as it comes.
We also found out on Tuesday that Nick’s port that is implanted in his chest is no longer usable. I really can’t complain. Nick has had this port for 5 years. Nick will be having surgery to remove this unusable port and replace it with a new one on Wednesday, Nov 9.
The last time Nick had this surgery he had several very rare complications. Please be in prayer that everything goes according to God’s will.
After working for quite a while to access the port and finally finding vein access for a traditional IV, Nick was able to receive IVIG on Tuesday as well.
We spent the night at a hotel and returned on Wednesday morning, Oct 19, for CT scans and a checkup with the oncologist (Dr. H).
The results of the CT scans are not what we had hoped. The scans showed that the three tumors have only shrunk marginally. Nowhere near enough to say that any of the chemo has been working effectively. After much discussion, we all (Nick, myself, and Dr. H) decided to stop chemotherapy.
Nick received a dose that day. He will receive one more dose on Thursday, Nov 10. This will only be the “old” chemo. The “new” chemo was not given at all Wednesday and won’t be given again. Nick has pretty much received all that he can for right now.
Dr. H is going to repeat CT scans in about 4 months (I think...lots of numbers were thrown around) to see what’s going on with the cancer. If the cancer remains stable, Nick will remain off of chemotherapy. If the cancer grows and Nick isn’t “sick”, we will probably keep holding. If the cancer grows and Nick gets “sick”, then we’ll start back up the chemo. This is all with the understanding that this same non-aggressive chemo approach will likely not work.
Why not take a more aggressive approach? Firstly, Nick doesn’t want to. His body, his right. I whole heartedly agree with him. Secondly, Nick had aggressive chemotherapy when he was a toddler. He suffered kidney damage, heart damage, and hearing damage as a result of that chemo. Risking what fragile health Nick has left isn’t worth it, especially when there isn’t a guarantee that it will work. Thirdly, at the end of everything, Nick still has familial polyposis. There isn’t a cure. It will become cancer one day. It can not be controlled. I have done the research and all of the medical intervention available to help maintain some control over this disease is very invasive and aggressive. It means removal of portions of affected organs (i.e. stomach, pancreas, liver, small intestine), insertion of a feeding tube at some point, and more surgeries.
We don’t know for certain that any of these worst case scenarios will happen, but there is medical documentation that these circumstances have happened with people who only have one of Nick’s health problems. I have yet to find documentation about someone with all of Nick’s health problems.
I don’t know what to ask anyone to pray for at this point. Wisdom, not only for me, Nick, and Kacie, but also for the doctors...especially Dr. H. He has been Nick’s oncologist for 16 years. He is really having a tough time dealing with the reality of Nick’s health and the decisions Nick and I feel it’s time to make.
The only other thing that I know to pray for is God’s will be done. That’s how I’m praying and have been. If it’s God’s will that Nick be healed here on earth, then so be it. If not, then God give us what we need to endure.
I don’t want to make this sound dire, yet I’m afraid that I have. I don’t want to sugar coat anything either.
Things are not dire with Nick’s health right now. Without a miracle from God, it can certainly get that way.
Please do NOT hesitate to ask me any questions! Answering questions helps me to better understand what the doctors are telling us.
Thank you for your continued thoughts and prayers.
Please continue to lift us up.
As always, we remain...
In HIS Grip,
Kristy Baxley
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