Nick and I were in Birmingham again yesterday (Wednesday, 5/11). We went on Wednesday this time, because we were able to schedule the pill camera endoscopy to take place while Nick was receiving chemotherapy and IVIG.
It meant that yesterday began with waking up at 4:00 AM and not getting home until 7:30 PM, but the benefit was not having to make a special trip for the 8 hour pill camera procedure.
The pill camera procedure is probably the least invasive scoping procedure I know of. The most difficult part of the procedure is the dietary change Nick has to endure for about 24 hours: clear liquids from early afternoon the day before the procedure to NPO (nothing by mouth) after midnight until two hours after the pill swallow (about 10 hours total). Then he could have sips of clear liquids again. At the four hour post pill camera swallow mark, Nick was allowed to have some pudding and the broth off of chicken noodle soup (but no noodles). Then he was just maintaining by sips of clear drinks until the pill camera finished it's journey (which was at 2:45 PM).
As soon as he was given the "all clear", he ate and ate and ate. Bless his heart. It broke my heart to have to be the "enforcer", especially while he is sitting there being pumped full of chemo and IVIG. Such is my role in his sweet life though...
There isn't anything new to report from the visit with the oncologist yesterday. He is seeing some small improvements in Nick's red blood cell production. Hopefully that trend will continue. The root cause was likely the polyps that were found during the scopes three weeks ago. Nick is taking about 1000 mg a day of iron supplements in order to treat and correct the problem with the red blood cell production.
CT scans are scheduled for June 2. These are very important scans. Nick is reaching the end of his scheduled chemotherapy protocol. As of the last set of scans, the PTLD/lymphoma still had not gone into remission. It really needs to be in remission by the time these next scans are done. Usually there is a certain amount of chemotherapy that takes place once the cancer is in remission. There are still just too many unanswered questions right now...
Nick will either have his IVIG infusion OR chemotherapy on June 2 once the CT scans are finished. We have already figured out that there just are not enough hours in the "clinic" day to do everything. That means we will be making a second trip within the following week for whichever infusion Nick does not receive on June 2.
There will be another update to follow as soon as we get the results of the pill camera endoscopy. The GI doctor said that it could be as soon as today, but the GI nurse said it could be as late as Monday. I am going to work really hard on NOT worrying over the findings during these next few days.
What are the doctors looking for? Mainly polyps in the sections of the small intestine that can not be reached with traditional scoping procedures. Since it has been shown that the Familial Polyposis (FAP) is present in the upper and lower regions of Nick's small intestine, the doctors all feel like it is necessary to try to see how much more of the small intestine could be affected.
My prayer is NONE!
There are lots of prayer requests in this update. I'm not going to take the time to point them out simply because I am exhausted and a bit overwhelmed. The last month has literally worn me out. So...please pray as God leads you.
I will update as soon as I hear something from the GI doctor.
God bless you all.
In HIS Grip,
Kristy Baxley
P.S. Nick felt well enough to go to school today. Kacie did great with her Nana and Pawpaw while we were gone for so long. These kids continue to amaze me!
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