Friday, July 27, 2012

Update on Nick 7/27/12

Nick and I were in the clinic for another round of chemo and IVIG on Wednesday, July 25.

Overall, everything went well. The only major issue we had was when the nurses had a difficult time gaining access to Nick’s port (the permanent central IV line in his chest). The problem this time was actually getting the needle in the right place. This is not a problem that we usually deal with. It’s very rare actually. Anyway, after multiple attempts, Nick’s blood pressure dropped rapidly, he broke out in a sweat, and he turned gray. The nurses and I got Nick laid down before he actually went fully unconscious. Nick immediately came back around, so the nurses and doctor all felt like the episode was a fluke. Just something that happened from the stress on Nick’s body and him holding his breath too long. His blood pressure remained fine throughout the day and there were no more problems.

It scared me. The nurses were AWESOME!! Their calm approach kept me calm. I don’t scare easily, but when it’s something Nick hasn’t EVER done scares me.

As far as I know, Nick’s lab work was good. I do know that there is still signs that the chemo is effecting Nick’s bladder. The levels are still within the parameters of allowing treatment though.
In three weeks, Nick is scheduled for CT scans. The scans will be looking to see what the cancer is doing, if it’s spread anywhere, and also to see if there is any activity with the FAP (the genetic condition that causes intestinal polyps to grow out of control).

Normally, Nick is really good with CT scans and drinking the contrast. With this set of scans needing to look at the lining of the intestines, Nick will have to drink a different contrast. This contrast is very thick and chalky. It is very difficult for Nick to drink it, especially because of the way the chemo has affected his sense of taste and texture. Nick ALWAYS gets sick when he has to drink this stuff. I have already asked that the doctor try to find another way of seeing what he needs to see without putting Nick through this.

Please pray that either an alternative can be found or that Nick will be able to endure it without getting sick. Also pray for compassion from the radiology technicians. They tend to think that every child acts this way just because they don’t want to drink the stuff. They don’t realize that Nick isn’t putting on an act. They always seem to forget that he’s the kid that will drink whatever they tell him to without complaint 99% of the time. If he says he’s getting sick from it, he really is. It’s not some excuse to try to get out of it.

Can you tell I’m stressed already?

The oncologist also wants Nick to have a PET scan to check the molecular activity of the cancer. The last time the oncologist wanted this test done the insurance wouldn’t pay for it. The doctor feels like Nick really needs to have the PET scan done. It’s been a year since the last one was done. Please pray for that situation.

The GI doctor is also being consulted about scheduling a scoping procedure to check the FAP as well. It’s been a year since they’ve looked. It’s time. Please pray they don’t find anything.

We are trying to get everything scheduled before school starts. The CT scans are scheduled for August 15. We don’t have any information on any of the other procedures yet. I’ll let you know when I do find out.

The oncologist also agrees with the kidney specialist’s thoughts about the episodes of Nick having the balance issues. Nick has been adding more fluids most mornings. So far, so good. No problems. Praise God!

I know this is getting long, but I have one more concern that I would like you to cover in prayer.

Nick is turning 18 in less than a month. That means transitions are going to need to begin happening. Nick will be able to remain a patient at Children’s until he’s 21, because he has been a patient there for so long. The problem comes with the complexity of Nick’s health. His oncologist is going to begin the process of finding an adult oncologist to treat Nick. It will likely take most of the next three years to fully make the transition from pediatric oncology to adult oncology. I don’t understand all of the aspects, but Nick’s doctor does. He told me that it’s something that is not easily done and takes a long time. To my understanding, it’s because Nick will be an adult with a pediatric cancer and there isn’t a lot of knowledge available in that area.

The only thing I know to do is pray. God knows what Nick needs. He will lead us there.

Thank you for continuing to lift us up in prayer. Thank you for the notes of encouragement and being there for us.

Trying to remain...

In HIS Grip,

Kristy Baxley

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