***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 concern...at 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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