Friday, April 8, 2011

Update on Nick 4/8/11

First things first...Praise God from whom ALL blessings flow!

Yesterday, Nick and I were in Birmingham for another checkup, IVIG, and CT scans. The chemo is on hold for a couple of weeks to give us a break during spring break.

The CT scans showed that the chemo is working! PRAISE GOD! The spleen looked completely clear of any cancer spots. The big mass in the lower right pelvis has shrunk to half of it's original size in January. These are such HUGE praises. This set of CT scans is evidence that the chemo is working very well and the we should continue forward as planned.

Next praise...Nick's IGG level is completely normal at 915 for the first time in 4 years! PRAISE GOD!

What does this mean? It means that the consistently higher doses of IVIG are finally stockpiling and Nick's body is able to hold some in reserve. It does not mean that his immune system is suddenly functioning normally, although if we all prayed for healing to that end it is certainly possible if it is in God's will. That was actually my first thought yesterday when we got the lab results back! The nurses were rejoicing with us.

Nick still received another high dose of IVIG yesterday, along with bunches of steroids to hopefully preempt any kind of reaction this afternoon that has landed us in the ER for blood work and total stress in the past.

I will try to explain why Nick received IVIG yesterday even thought his level was perfectly normal.

So... imagine Nick's immune system like a bucket that has a leak in it that can't be fixed. No matter how much water (IVIG) is put in the bucket, it keeps leaking out. Over time, the bucket will be more empty than full unless some kind of change is made to the water source. If the water source is increased and the bucket is kept as close to overflowing as it can be, the water level inside the bucket doesn't decrease as much as before. It may not even have a noticeable decrease in the volume of water. As long as that water source is kept consistent, the level of water will likely be maintained in the bucket even if some water is still leaking out.

The hope is that we have finally reached this point with Nick's IGG level. With the continued increased doses of IVIG, his leaky immune system is finally able to stay more full than empty.

I hope that makes sense. It sounds good in my head. If not, forgive me please. Reply back and I will try to explain it in a different way. I am so very tired this morning.

The rest of my news is a praise, but there is some of it that is difficult to deal with.

The praise first. What was thought to be a mass at the base of Nick's stomach/upper portion of his small intestine is not a mass. Praise God!

I, more than anyone do not want to take away from any praise that God grants us.

Here is what we do know: There is something located there. The something is actually a polyp located inside the intestine in the lower portion of the duodenum (pronounced: due-ah-den-um... I think), that is the name of location of the upper portion of the small intestine below the stomach and is shaped like a C.

It is another PRAISE that this was able to be seen this clearly on the scans. In past scans, it was seen and thought to be outside the intestine pressing against it. Therefore believed to be the PTLD/lymphoma.

What does this mean? This means that the cancer causing genetic condition (aka Familial Polyposis/FAP) that Keith had and Nick has, is rearing it's ugly head again. This condition is what caused the cancer that Keith died from. This condition was passed down to Nick and has caused numerous problems for him. We had hoped that having some preventive surgery 5 years ago would stop this disease, but in Nick's case it hasn't. With each instance of polyps occurring in the small intestine, there is increasing belief that the version of the genetic disorder Nick has is more aggressive.

Ok...we have been here before. Just a short time (maybe a year, maybe less) before Keith died, Nick had one of these polyps show up. The GI doc scheduled surgery to scope Nick and possibly remove the polyp. The procedure was risky and there were surgeons on call at the time of the procedure due to the risk of the intestine being punctured and Nick needing emergency surgery to make an immediate repair before death occurred.

This is the same type of scenario. Nick's GI doc has already been notified of the findings. He will be looking at the CT scans himself, maybe today. There will be a plan made for scoping, biopsy, and removal (if possible) in the coming days. I will be notified next week of the day and time of the procedure. There will likely be more than one scope done in order to look at as much of the intestine as medically possible. Due to the risks involved with Nick, everything will take place in Birmingham.

Last time, God granted us a miracle. The GI doc got in there and saw where the polyp had been located. The polyp had disappeared. The doctors said things like: "It broke off and passed on through the bowels.", "It ruptured, and Nick's body reabsorbed it.", etc.

We KNOW what happened. We all prayed for a miracle and God granted us one. God made that polyp go away. The doctors still can't really explain what happened. It's okay, because WE KNOW!

I'm asking everyone to please pray specifically for God to heal this polyp once again. He is the Mighty Physician and Healer.

The oncologist wants the procedure to take place before the next round of chemo. The chemo has been put off a couple of weeks so that the kids and I can have a spring break. You know...time off for good behavior. The flip side is that the chemo doesn't need to be put on hold too long since it is working like gangbusters on this cancer.

The most likely dates of the procedure will be the week of April 18, probably being either Monday the 18, or Wednesday the 20. Chemo will follow as soon as possible, maybe even the day after the procedure.

There is also another prayer need. The mass located behind Nick's belly button has not changed in size at all during the chemo. It is now necessary to get a biopsy of that mass to see what it is. It is possible that the biopsy may be taken at the time of the other procedures, but it sounded like the intestine thing has taken precedence over this. So, it may be a little while.

There is also the possibility that Nick will need to have a bone marrow biopsy done to check for the presence of iron in the marrow. Nick is showing signs of iron deficiency but the oncologist is not certain of the cause. There is a lot of information surrounding this issue that I'm not going into, because it too is on the back burner as well. I'm putting it out there so that you awesome prayer warriors can pray about it.

The oncologist has made some oral medication changes that will hopefully allow improvement. It is also possible that the iron deficiency is due to some blood lose caused by the polyp in the small intestine. It's baby steps. Maybe one fix will lead to others.

I know this is a lot to digest. I'm not fully certain that I've gotten it all straight yet. I wanted you all to know as soon as my tired mind would let me form the words though.

Thank you very much for the continued prayers and support. We could not walk down this road without you.

I don't know how we are emotionally. I'm desperately trying to hold onto the praises.

Pray, pray, pray

As always, we remain...

In His Grip,
Kristy Baxley

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