Thursday, June 14, 2012

Update on Nick 6/14/12

***Latest News*** Nick isn't feeling well at all today. He has gotten sick to his stomach. Please pray that he'll feel better quickly.

***Original Post***
Nick and I were in Birmingham yesterday at Children’s Hospital for another checkup with his oncologist, as well as chemotherapy and IVIG.

Nick’s blood work looks very good. Every level that came back was within normal range. As always, there are some blood tests that don’t come back right away. With these particular tests, no news is good news.
Everything went very well with Nick’s port working, and Nick receiving the IVIG and chemo.

Now on to the hard part...

I have mentioned in the last few months that Nick has had an issue here and there with maintaining his balance at odd times. I also pushed for Nick’s oncologist to order a set of CT scans of Nick’s brain to check for any tumors that might be growing and causing the small issues with Nick’s balance. Those scans were done in March and everything was fine. The CT of his brain did not show any areas of all.

Nick went for a little while without having any more balance issues. Myself, the oncologist, Nick, and his ENT doctor attributed the cause to a possible inner ear/fluid in his ear issue or even just clumsy from long bone growth. Nick didn’t have any more balance issues for about a month (give or take). There hasn’t been any kind of pattern to when the balance problems occur.

Nick has had two relatively defined balance episodes within a week of each other. When Nick told the oncologist about this most recent event, the doctor immediately did a neurological exam and asked Nick several very pointed questions (Back pain? Ringing in one ear or both ears? Headaches? Dizziness? Loss of balance upon standing? etc.). Nick answered no to all of the questions.

I’m not sure if the oncologist saw something in the neurological exam that concerned him. Once the doctor finished the neuro exam, he told me that he wants a full MRI of Nick’s brain with and without contrast. He also said that if there is a cancer there it is probably a slow growing one.

This has been Nick’s doctor for almost 17 years. He has NEVER said these words to me. Every time, up to today, Nick has reported having the occasional balance issue, the doctor did NOT even entertain the idea that there could be a cancer in Nick’s brain. The CT scans done of Nick’s brain in March were because I pushed for them. They were for my peace of mind. The CT scans of Nick’s brain were done at the same time the other CT scans were done and did not require any extra effort. An MRI requires more effort and isn’t ordered without a lot of thought. I did no coercing or convincing today. The MRI decision is 100% on the doctor.

I’m sorry if this is confusing. I don’t have a very good grasp of everything just yet.

The MRI will likely be scheduled for Thursday, July 5. I will find out this coming Monday on the exact time. The doctor wants it done the next time we come back to clinic. He did not see any reason for the MRI to be done sooner. I’m perfectly fine with waiting until then. We will get the results the same day Nick has the MRI.

I am operating on a need to know basis with the kids. Obviously, Nick knows since it’s his body and he was there. The doctor and I both tried very carefully to keep Nick from being afraid. Nick knows that the MRI is going to be done to try to figure out why he is having the balance issues. Kacie knows NOTHING at this time. She is away at CentriKid Camp with our church until Friday. I will likely address everything in the same way that I did with Nick. I am being so careful with what words I use because of what they saw happen with their dad. I am being VERY careful about using the words “tumor” and “cancer” in conjunction with “brain”. I do not want either of them to be afraid or worried before there truly is something to worry about.

I am asking to please pray specifically that the doctors be able to see anything that needs to be seen. Please pray for some resolution to Nick’s balance issues. Clear and defined answers to these things that are plaguing us would be nice.

Above all else, please pray as God leads.

We are truly...
In His Grip!
Kristy Baxley

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