Thursday, August 23, 2012

Update on Nick 8/23/12

It’s been a week since we were in Birmingham for the long stretch of tests and chemo. I have been waiting to hear results from these tests before I sent out an update.

Overall, everything looks to be stable. The PET and CT scans showed the cancer to be stable with a small amount of improvement. YAY! PRAISE GOD!

The tumor located behind the belly button showed the most improvement both on PET imaging for metabolic activity and on CT for reduction in size. The mass is still “hot” or PET positive, but the “heat” generated by the cancer cells was noted to be less. The phrase in the report described it as being “not as bright”. That is definitely some good news!

The larger pelvic mass did not show as much improvement in size. It is considered to be stable at this point. It was also still PET positive and without much change in the “heat” reading. Stable is good and we will take it! 


The other big praise is there were NO indications of ANY NEW DISEASE! Woo-hoo!!! Another huge praise!!! No new cancers!!

I don’t have the final impressions of the pill camera endoscopy, but the CT scans showed that there are polyps present in the small intestine. It did not show anything large that would cause a blockage. ANOTHER PRAISE!
It has been a year since Nick has had these GI tests run, so I am very happy that nothing large was found. This is the first time, with this length of time between tests, that nothing large has been found. PRAISE GOD!

I don’t anticipate the final results of the pill camera to tell me anything conflicting. In the past, these two tests have been in sync.

The only thing that the CT scans showed that did cause me some concern is called a calcified granuloma in the right lobe of Nick’s liver. From what I understand from the research I’ve done, this isn’t that uncommon. A granuloma is a benign tumor caused by a collection of white blood cells usually left over from fighting some type of infection or inflammation. Calcified means that it’s basically hardened. guess is that it’s a little hard ball of old white blood cells.

When Nick’s lab work came back, one of his liver function numbers was elevated. That really concerned me. Even though it will be 16 years on Sept 3 since Nick’s liver transplant, I still watch his numbers closely. The elevation of this GGT level had me concerned and I did talk to the doctor about it. He was not overly concerned, because the number was not extremely high. It was just higher than Nick’s normal. Since that conversation, the results of the CT scans showing this calcified granuloma makes me think that is the reason for the elevation of the liver function. The research I’ve done has also indicated that some of the medications Nick has to take and the PTLD/lymphoma can also be the cause of the development of the granuloma. The best news is that it’s calcified, because that means it’s old.

I am not really going to worry about it until the transplant team tells me to worry about it. The doctor has ordered a full liver function panel of blood work next time we’re down there just to cover the bases. I’m good with that.

Another big praise is that Nick’s IGG level, which basically indicates how much immune system Nick has, was 1238!! That is the highest it has been in YEARS!!! It is completely normal. This is a major indicator that the IVIG infusions are working. We aren’t sure if Nick’s body is actually making any IGG on it’s own. The only way (to my knowledge) to know this is to stop giving the IVIG for awhile and we do not want to take that risk.

So with all of that in mind, the oncologist has decided to let us wait 4 weeks until our next trip to Birmingham for chemo and IVIG. This will allow the doctor to see what Nick’s IGG level does by waiting an extra week. How much difference can one week make? Infusions of IVIG are only “good” for 2-3 weeks. That’s why Nick has to get them so often. With his body not making ANY IGG at all, he needs the infusions of IVIG all the time. The theory the doctor is testing is to see how low Nick’s IGG level gets by waiting one more week before “refilling” with the IVIG.

I know this is a lot of information to digest. It’s taken me a few days to even get close to digesting all of the information.

There are lots of praises and answered prayers here. I am so thankful for that. I have been feeling really worn out and run down for a while. I REALLY needed to hear some good news. I am thankful.

Please continue to pray for Nick. Pray for me and Kacie too. When someone in the family has cancer, it affects the WHOLE family. I think we are all feeling the effects of fighting cancer for so many years.

Nick is scheduled to return to Children’s Hospital for labs, chemo, and IVIG on September 12. If anything comes up before then, I will certainly let y’all know.

Thank you for continuing to walk alongside us through this journey.

In HIS Grip,
Kristy Baxley

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