Friday, December 30, 2011

Update on Nick 12/30/11

It’s been a little while since I sent out an update on Nick. Things have been pretty routine. Nick was in Birmingham last week for chemotherapy, IVIG, and checkups with the oncologist and the kidney specialist (aka nephrologist). Everything on the oncology side checked out okay. Nick got his chemo and IVIG without any problems.

The checkup with the nephrologist was Nick’s first follow up since being put on blood pressure medication. The doctor is very satisfied with the way the medication is controlling Nick’s blood pressure. The doctor wanted Nick to have a special scan of his kidneys in order to check for scarring. The scan is called a DMSA scan and falls under nuclear medicine. It is very similar to the PET scans that Keith and Nick had in past times. This one involves less radiation though.

Nick and I went back down to Children’s Hospital yesterday (Wednesday, Dec 28) for the DMSA scans. I don’t have any final results yet, but as soon as I do I will pass them along.

I’m not totally clear on what good results are for this scan. Honestly, I’m confused after speaking with the nephrologist about it prior to the scans. I’ve decided I’m not going to pass along any information that I have right now until I get some things clarified. Just pray that the doctor sees what needs to be seen and God’s will be done. It would also be good if the kidney problems would just be healed.

Right now, there aren’t any other tests scheduled. The oncologist is debating on how soon to do the next round of CT scans.

Due to scheduling conflicts, we get an extra week off before Nick’s next chemo treatment. I will say that I am not sad about that! Any kind of break is greatly appreciated!

We are scheduled to return for chemo and IVIG on Jan 18. Please continue to pray as God leads. I also ask that prayers specifically for Nick’s immune system be lifted up. Going the extra week stretches the protection that the IVIG provides. Pray that Nick’s immune system can stay strong. He is on some antibiotics because of some congestion that surfaced a couple of days following his chemo. That’s being very proactive, but with the Christmas holiday and all the contact with people, it was better not to take any chances.

I hope this finds you all well. I hope that you and yours had a very blessed Christmas. We certainly did!

In HIS Grip,

Kristy Baxley

Sunday, December 4, 2011

Update on Nick Baxley 12/4/11

I’ve taken the days between our latest visit to Birmingham and now to digest some new information. We have also been incredibly busy since coming back from Birmingham.

Thank you for the continued thoughts and prayers. Nick is feeling great. He seems to have completely recovered from the surgery to remove and replace his port. The new port was very easily accessed on Wednesday, and it worked beautifully! What a praise!!!

Nick had his scheduled chemo treatment on Wednesday, 11/30. He has done very with that as well. He hasn’t had any sickness. He does tire quickly though. That is just another one of the side effects of being on long term chemotherapy.

From the oncology side of things, Nick is stable and doing well. His blood counts are holding steady. His IGG level is steady as well, as long as we continue with the IVIG infusions.

The new information I received is from the kidney specialist. All of the tests that were done on our initial visit with Dr.F have led him to diagnose Nick with Chronic Kidney Disease Stage II (mild). That is copied exactly as it is printed on my copy of Nick’s diagnoses.

I don’t understand a lot about Nick’s latest medical issue. The kidney’s are a part of the body that I haven’t had to learn a whole lot about. What I do know, I had to learn due to the kidney problems created by the chemotherapy Nick was on when he was little. So, I am learning as we go.

The damage caused by that particular chemo drug 16 years ago is what initially set this new diagnosis into motion. Nick’s kidney function was watched very closely for many years after he received his last dose of that chemotherapy. Nick’s basic kidney function blood levels eventually returned to normal and we didn’t really think much of it until years later.

When Nick had his colon surgery in 2005 that had all of the complications, he also went into Acute Renal Failure. That was when we began to realize that Nick’s kidney issues were far from being as stable as we had believed. The complications from the surgery and very strong medications necessary to treat the infections caused Nick’s kidneys to stop functioning for a brief period of time. The doctors were able to get Nick out of renal failure, but the episode had left Nick’s kidneys scarred. Nick began chemotherapy a year later for the first round of PTLD/lymphoma. During the five years since, Nick’s kidneys have seemed fine until this past summer.

At the end of this past summer, Nick began to have blood pressure problems. Nick was receiving a lot of steroids at the time, and that was thought to be the culprit. As the summer moved into fall, Nick’s blood pressure did not come down. Coming off of the extreme doses of steroids did not help either. That is when the oncologist decided to consult with the kidney specialist.

That brings us up to this past week.

The nurse for the kidney specialist and I talked a few times this week. She confirmed that most of the extensive blood tests to check Nick’s kidneys were within normal ranges. There was one test that was not. This test checked the renin levels in Nick’s blood. This level was high. (I haven’t done enough research yet to be able to really explain renin and what it does.) What I do know is that the high renin level means that the kidneys are in a cycle of continual damage.

The damage that is being caused can not be repaired. The best case right now is to stop the damage cycle. Basically, Nick’s kidneys won’t get better, but hopefully we can stop them from getting worse.

More tests are scheduled to be done on December 20 and December 28. The December 20 tests will be blood tests to recheck the same levels from the initial visit. The December 28 visit will be for a special scan that will allow the kidney doctor to see how well Nick’s kidney’s are actually functioning. Nick will be injected with a dye and after 4 hours, he will have some kind of scan that will track where the dye went etc. (Again, another thing that I don’t know much about and haven’t researched yet.)

The December 20 visit will be combined with the next round of chemo and IVIG. The December 28 visit will be strictly for the special scans. Yes, two visits very closely together with Christmas sandwiched in between. SIGH...

The good news I am focusing on is that the new blood pressure medication the kidney doctor started Nick on 6 weeks ago is working to control his blood pressure. What impact does this medication have on stopping the damage cycle? Honestly, I don’t know. I hope that the fact that Nick’s blood pressure is responding means the damage cycle is being interrupted.

I know that this is a lot of information to digest once again. When it’s overwhelming for me, I know that it has to be overwhelming for everyone else too.

I don’t know how to ask you all to pray. I am simply praying for God’s will to prevail. I am resting in the knowledge that whatever happens, Nick WILL BE HEALED.

As always, we remain FIRMLY,


Kristy Baxley