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! 

PRAISE GOD!

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. So...my 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

And now we wait

I don't know anything from the tests and scans Nick had this week.

We arrived in Birmingham Monday evening. Nick drank his prep for the pill camera. We actually had a pretty good night. I guess that's one small benefit to Nick not having a large intestine. These preps don't take all night.

Tuesday morning we got to the hospital bright and early. Nick did really well handling the diet restrictions for the 24+ hours. He was only allowed clear liquids after he ate lunch on Monday. Then he couldn't have anything to eat or drink from 10 pm Monday night until almost 10 am Tuesday morning. Then it was only clear liquids again. He was able to have some pudding a little before noon on Tuesday.

The test ended a lot quicker than we anticipated. The pill camera takes as long as it takes. It ended it's journey a little after noon on Tuesday. We weren't anticipating it to be finished until after 3:00. Another blessing there. The GI nurse was a little concerned that the camera might have traveled too quickly to get good pictures. I haven't heard either way yet.

After we left the hospital Tuesday afternoon, I took Nick to eat some food. He was so hungry. We had an enjoyable evening swimming at the hotel pool. We were the only ones in there. I got a nap in and was able to catch up a little bit on resting.

We were back at the hospital on Wednesday morning. This time Nick was only without food and drink for a few hours in preparation for the CT scans that morning. Nick was worried about being able to drink the bottle of nasty contrast for these particular scans. It's not the usual for him, and this stuff even smells bad. The change in the contrast this time is so the doctors can look at the intestinal lining to see if there are any polyps growing from the genetic disorder.

Nick drank the contrast down without any problems. I am so proud of him! He managed to keep from getting sick from it. That is a huge answer to prayer. Once the CT scans were finished, we headed back to the cancer clinic for Nick's check up and infusions.

The checkup went fine. The doctor didn't find anything that overly concerned him. Nick's Igg level is AWESOME!! It's very much in the normal range right now. BIG PRAISE!! Most of the other blood counts were good as well. There were two that stood out as being off though. One is the sedimentation rate (aka sed rate). It basically measures how fast the red blood cells settle to the bottom (I think). The faster they settle, the higher the sed rate. That higher level is an indicator of inflammation. It is a blood test used in many ways to diagnose or interpret different diseases.

Anyway...Nick's sed rate was a little high. Not majorly outside the bounds of normal, but it will bear watching. The other lab value that is a cause for concern is the GGT. This number is an indicator of how well the liver is functioning. We have lived by the GGT for 16 years. The liver transplant team looks at this number to help determine if the liver transplant may be going into rejection or is already in rejection. Nick's GGT has been very good for a very long time. It was outside the bounds of normal on Wednesday. Over 50. 50 was the magic number the first several years after the liver transplant. As long as the GGT stayed under 50, we were good. Nick's level on Wednesday was over 50. :-(

I'm not sure whether to worry about it or not. The oncologist said that we would also watch this number as well to see if there are any problems. I know the transplant team will be looking into as well. I don't really know what to think about it. I don't know how the transplant team handles the increased levels after so many years. So...more uncharted territory.

While Nick was receiving his chemo and IVIG infusions Wednesday afternoon, there was an emergency with another child in the same treatment area. It was really bad and really scary. The child had a severe allergic reaction to the treatment he was receiving. The staff ended up having to call the CODE team to come help get the child breathing again. They were able to get him stabilized and he was moved to the intensive care unit for further care.

That situation is a part of the reason why I don't have any results on the PET or CT scans.

The oncologist said he will call me once he has thoroughly reviewed these scans and compared them to previous scans. I had hoped to hear something by now, but I haven't. Nick's doctor is notorious for calling at really odd times, so it's possible for me to hear something this weekend...even on Sunday.

I'm doing okay with leaving things in God's hands most of the time. It helps that the kids are starting school on Monday. Nick's first day of his senior year. Kacie will have her first day of  seventh grade..."junior" high. WOW! When did they grow up?

 As always, we are trying to remain...

In His Grip!

Kristy

Ups and downs

Things have been mostly routine lately...or I've been trying to convince myself that they are routine. In all actuality, nothing is routine. I feel like my world is spinning out of control and there isn't anything I can "do" about it.

You may be wondering what the heck I am talking about. I know I haven't been writing here much. Like I said, I've been clinging to what little bit of routine there is. I haven't even been writing much in my private journal.

My little battle weary family is going through another major transition. Nick is turning 18 in 2 weeks. That has led to some drastic changes AND acceptance of certain realities that have taken us both by surprise. Nick is starting his senior year in high school. WOW! It's a tremendous achievement for Nick, especially since Keith and I were told no less than 5 times that he wouldn't live, he wouldn't be able to function outside of a third grade level, and he would never be able to be an independent adult. It's all wrong. The doctors were all wrong. God was and is in control of this young man's life. He always has been. He always will be.

So...what's my problem? My emotions are in a crazy whirlwind once again. It is sadness and grief, but these emotions that have become so familiar to me are changing. I'm sad that Keith isn't here to see Nick growing into a man. I'm sad that Keith isn't here to teach Nick how to be a Godly man.

I'm having nightmares about my lack of ability to be a father figure to Nick. I can't be what I'm not. I'm not the only thing that Nick needs right now. He needs his dad and his dad isn't here.

As if ALL OF THAT weren't enough, it's time for Nick's version of the yearly tests. Tomorrow he has to begin the prep for the pill camera endoscopy that will take most all day Tuesday. Then on Wednesday, he will have CT scans, chemo, and IVIG.

I keep telling myself this is just routine, but now that the time to actually do this is here...I'm not so sure. It's occurring to me that this "routine" we are in will likely be Nick's routine until further notice. Chemo, IVIG, scans, scopes to check the progression of the polyposis....and it begins all over again. It will be this way until God either calls Nick home or He gives Nick a miracle.

It's occurring to me as I see other young men Nick's age enter their senior year, that what Nick is going through is so far removed from routine. Nothing about it is routine. Keith and I did the best we could with what we had to give Nick a sense of normalcy and routine when life seemed like it was spinning out of control. I've tried to find the new normalcy since Keith's death. Just when I think that I'm doing ok with being a single parent and making the hard medical decisions for Nick without his dad, I get hit with something else that causes me to question myself and my abilities as a parent.

I'm in a rough place today. I'm crying and I haven't needed to cry in a long time. Kacie wanted to know why we didn't go to church again this morning. It's because I just couldn't get ready. I just couldn't make myself go. The nightmares last night have left me with a huge amount of sadness and grief. More than I've experienced in a long time. I don't know what I'm able to accomplish today. Right now, it's sitting here on the couch crying.

So...pray for me friends.

Kristy