Aaron’s Story

Site created on February 15, 2018

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Journal entry by Amber Shipman

Today we travel to St. Louis for Aaron’s 18 month transplant physical.  I had lots of feelings about this appointment.  

Happy we are here
Sad we had to get here 
Happy because many kids don’t see 18 months 
Sad because many kids don’t see 18 months 

The appointment was pretty great.  They are putting Aaron back on Gabapentin for the nerve pain in his right leg (this is nerve damage done by the chemo).

We are also going to check with the neurologist about Topamax - since 2 of its major side effects are concentration and memory and those are both new problems for Aaron.  About 2 months ago Aaron started having daily constant headaches, after a very intense ER visit his primary and his oncologist decided it was time for a spinal tap.  The thoughts on the diagnosis - either viral meningitis or a reoccurrence of the leukemia.  Neither are great but nobody wanted to hear the word reoccurrence.  So Aaron’s BFF at St.Johns (Vanessa) came in on a Saturday morning and assisted Dr.Brandt with his spinal tap.  Have I mentioned how awesome Vanessa and the entire child life specialists are?  Halfway through the spinal tap they pulled out equipment Mike and I had never seen before during his many spinal taps.  It was basically a barometer - they literally hooked it up to his spine and put it in an upright position and the we all watched as the pressure rose.  A normal pressure is somewhere around 20.  Aaron’s was a 49!  The anastesiologist looked at Mike and I and said the new medical term we would be learning about.  Pseudo Tumor.  

Pseudo-tumor cerebri can happen if pressure rises around your brain due to too much spinal fluid.  
This fluid surrounds your brain and spinal cord and protects them from injury.  Your body constantly makes cerebrospinal fluid. Then it reabsorbs the fluid through your blood vessels to keep the same amount flowing around your brain and spinal cord.  Sometimes your body makes too much cerebrospinal fluid. Or it doesn't reabsorb enough fluid. If either of these things happens, the amount of fluid surrounding your brain can rise. This can raise the pressure on your brain and cause swelling of the optic nerve, which sends messages from your eyes to your brain.  Too much swelling of the optic nerve can cause permanent blindness so it has to be corrected to prevent damage.  

Don’t get me wrong, Aaron is kicking ass!  He had a pretty intense treatment so there are bound to be ongoing issues.  I asked Dr. Hyashi if the pseudotumor was a side effect of any of the cancer treatment or just more of the Aaron Shipman medical good luck.  The docs answer?  A smile and “well it’s not a cancer issue”.  He gets 6 months away from St Louis at which point he will start with the late effects clinic and become a 1 time a year visitor!!!!!

We ended our trip with our regular Cheesecake Factory lunch before coming home.  

So now we fight. 
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