Friday, September 28, 2012

Update on Nick 9/28/12

Nick’s latest visit to Birmingham got pushed out a couple of extra weeks, because I got sick. I think it’s the first time in the almost 17 years of having to take him down there that I have been too sick to go.

So, we were there this week. Overall it was a very positive visit.

We got the final results on all of the scans that were done on Nick’s last visit. The scans show an amazing amount of stability. The oncologist said that the results were completely unexpected. He even went back and compared these most recent scans to scans done one year ago. There has been NO growth. NONE...AT ALL of the main mass in the lower right side.

There are no new tumors. The smaller spot behind Nick’s belly button is even in question about being a cancer. 
The doctor is wondering if it’s a lingering infection from surgery or something.

These AWESOME findings have made the oncologist question the continuing need for long term chemotherapy. 

There are questions now being asked about the main mass even being “live” anymore and if surgery is a possibility. The PET scans were not as defined as the doctor would like in order to make a more solid determination of whether the cancer is still active (live) or inactive (dead).

The oncologist is going to take Nick’s case before the surgical team for their opinion on trying to remove the mass. The last time Nick’s case was taken to the team, surgery was not an option. The risk was simply too great due to the location of the mass. It couldn’t be reached without putting Nick’s life at great risk. I don’t know that anything has really changed in that aspect, but I know that God is PERFECTLY capable of changing it.

The oncologist also said that he isn’t sure about what step to take next because this cancer isn’t behaving like the “books” say it should. We ARE in uncharted territory. Imagine that! We’ve been in that place before. Nick was the first liver transplant done to cure a cancer 16 years ago at UAB Hospital. I wouldn’t know how to act if things went according to previous medical history. It’s okay though, because God knows exactly where we are and what needs to happen. He has a plan. (Jer 29:11).

The plan that we agreed to set into motion will be some very subtle changes at first. Immediately, the oncologist has changed Nick’s chemo schedule to every 4 weeks instead of every 3. That will give the teams some time to see how the mass reacts without really putting Nick at major risk. If Nick’s immune system could tolerate going longer, we would stretch it even further. At this point in time, 4 weeks is really the max for his immune system to be strong enough between IVIG treatments.

While we are on the 4 week chemo/IVIG schedule, the oncologist will take Nick’s case to the team of surgeons. They will begin the painstaking process of looking at ALL of the scans to determine if surgery is a viable option. After the first of the year, the oncologist wants to schedule Nick for another set of PET and CT scans to see what the mass is doing. The oncologist wants to have these scans (and all future scans) moved down to Children’s. 
The hospital has a new, very high tech PET/CT scanner in the new building. Apparently, this new machine shows things in much getter detail than the one we’ve been using in Huntsville.

Why doesn’t he just go ahead and get these newer, more detailed scans? Because insurance won’t pay for them. The answer is that simple. We will be lucky if the insurance company approves the scans after the first of the year. That’s a BIG prayer request right there!

The next part of the plan is dependent on surgery. If the surgery is able to be done, Nick will have chemotherapy for 6 months to a year post surgery recovery to make sure that there are no lingering cancer cells. After that point, we will play the watch, wait and pray game. Watch, wait, and pray that the cancer doesn’t come back.

This is the first glimpse of a future without long term chemotherapy that makes sense to me. Nick has very mixed feelings about the surgery. I would be surprised if he didn’t. I’m not sure how I feel about it yet. I’ll know more when we have more answers I guess. 

The oncologist mentioned that this cancer isn’t behaving like the medical journals indicate. Why? He doesn’t have an answer to that question. He did say that he has had another patient who had a cancer that was not behaving in the expected way. They did a highly controversial surgery to remove an area that was adversely affected by the kid’s particular cancer. The kid has been cancer free ever since. There’s no proven medical reason why that worked. The oncologist even said he would be laughed at when he brings Nick’s case and proposed plan to the other doctors, because it is so out of the realm of accepted treatments for Nick’s type of cancer.

That quality is one of the things I like so much about Nick’s oncologist. This is the very same attitude that he had almost 17 years ago when we first met him. He was willing to think outside the box and look for other treatment options.

I have no idea what will come out of all of this, but my hope is that it will finally get Nick to place of normalcy as he enters adulthood. Being cancer free would be an AWESOME graduation present!!

There are lots of prayer requests here. Please pray as God leads you warriors.

In HIS Grip,

Kristy Baxley

PS: Nick’s blood counts all looked good. The liver function number, that was high last time, has come back down to a more normal level. His IGG level was low, but not rock bottom low. His kidney function levels looked good too! Praise God!