So by now many of you have seen the release of the AZ Wall Calendar for the 2012 year. It is a compilation of some amazing pictures taken by some of you very people reading this thread. The calendar is more a type of story book about what we strive for and love on this forum each and every day. But every good book with beautiful pictures needs to have a story to go along with it. Teamed up with the calendar this year is not only a special key chain and a special edition sticker, but a very special story of a members fight for his daughter and the ups and downs that come with the joy of being a parent. John or most of you know him as EErie B6 is the father of one of the strongest little girls in the world. Since a very young age she has been battling a brain tumor with the help of doctors, nurses, and most importantly family. So this year we paired the calendar with some Special Edition AZ Swag. A custom made Key Chain that reads "//A in support of Kaylah" and a Special Edition "//A" sticker. If you haven't ordered on yet here is the link to make your purchase.
The reason i am making this thread is to give John a place to share how things are going, post pictures, updates and most importantly give him a place to go while he is trying to escape from the normal conversations with doctors and people who he doesn't even know. We are his family, and I know I’m not alone when I say we are here for ya man! Below is a write up by John that gives a little history of how we came to be where we are now. I know from chatting with John that in the month of December they spent a total of 6 days at home and not in the hospital. They made the best out of Christmas they could. So as a late gift to John, Kaylah and the rest of the family lets promote the hell out of the Key Chains and Stickers and give them the best after Christmas gift we can, our support.
Kaylah's Story:
Our daughter Kaylah Elizabeth McGeary was diagnosed with Juvenile
Pilocystic Astrocytoma (Optic Glioma) on 10/24/2009 at 11months of
age. She was urgently flown from Erie, PA to Pittsburgh Children's
Hospital, was immediately intubated, and had bedside shunts placed to
relieve the pressure. Her tumor blocked her third ventricle and this
caused her to have increased water on the brain, vomiting, and
lethargy. On 10/27/09 she had a bicoronal craniotomy to figure out
the type of tumor it was. It is located in the middle of the brain so
there are critical structures surrounding it that could be injured by
removing it. We were told it could not be surgically removed. Then on
11/3/09, she had another major brain surgery to install her first
ventriculoperitoneal shunt and a mediport on the same day. She had
complications during that 3 week admission like a blood clot (which
required 6months of Lovenox via needle injections 2x a day) and c.diff
colitis requiring potent antibiotics. We were home for only a few
days and then readmitted for a week due to further complications. She
was started on chemotherapy and had received an entire year of
carboplatin. She got this once a month for 1 year. (126mi one-way
trip to Pittsburgh) She had a couple more readmission during that year
for fevers due to the chemo. She gets MRIs every 3months and requires
anesthesia in order for these to be done.
In November 2010, she was given 6months of a break from chemo before
her MRIs showed growth again. Then on April 28, 2011 was started on a
weekly chemotherapy called vinblastine. (done in home with quarterly
trips to Pittsburgh for checkups and MRIs) She tolerated this until
August when we were told her tumor was smaller, but then she started
to have worsening problems with her mediport. This caused us to make
more frequent trips to Pittsburgh Children's to have that evaluated.
Turns out her body caused a chemical reaction to the port line causing
it to thicken and weaken and block the blood flow into her arm. So on
11/18/11 had the port taken out and replaced with a new one, different
type, similar route but rather this time leading into her neck then
down to her heart. We were also told that she had a clot and had to
go back on Lovenox (the start of 3-months worth of injections 2x a
day). She had started her new chemotherapy that same day.
We thought she was over the chemo 5 day hump (Carboplatin requires 5
days of around the clock Zofran for nausea/vomiting with 3 of those 5
days also requiring 8 hours of IV maintenance fluids)... but to our
surprise she ended up back into the ER a few days after that
post-chemo-crumby period. She was once again flown by Helicopter to
Pittsburgh Children's to find out she needed emergent surgery. On
11/27/11 she had a surgery to burn a hole into the membrane between
her lateral ventricles (allowing them to equalize pressure and drain).
She did well for a day, then quickly spiraled down into a somber
state. She then required to have a revision of her shunt on 11/29/11,
for it failed due to the disruption of the above surgery. She did
well for a day, then had to have a bedside procedure to tap her shunt
to see if it failed again. Once again her pressures were too high and
she needed her cerebral spinal fluid drained off to temporarily get
her through until the following morning. Then 12/1/11 she had a 2nd
revision of her shunt (additional surgery). She also has had
experienced other complications with this admission and she is
currently fighting to heal from those.
During this entire process, she has received on average 5 sessions of
therapy per week. Typically this has consisted of 2 sessions of
Physical Therapy, 2 sessions of Occupational Therapy, 1 session of
Speech Therapy, and 1 session of Vision Therapy. Vision Therapy was
later dropped for an addition session of Speech Therapy as her vision
problems have somewhat stabilized although she still has vision
deficits to this day.
In addition to the above, Natalie (my wife and Kaylah's mom) has had
to maintain an 80+ hr week schedule (due to an inflexible schedule) at
her job, while I watch Kaylah (and now our 6 month old son Iain) at
home during the week dealing with the various therapists and typical
domestic responsibilities. On the weekends when Natalie is home I work
an average of 16 hours a week at Home Depot to help make ends meet
while she watches the kids.
I recently talked with John and he says things have been looking brighter for a while now but i will leave him fill you guys in.
Also guys there is a special //A avatar for Kaylah if you didn't know. Go into your Account's Profile Settings to easily make the change.
John if there is something here that you would like me to not share let me know i will remove it.
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