Sorry for the cross post but i know this will get the much needed attention in here as it is John's home forum as a fellow B6'er.
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.
I wanted to take a few minutes to thank all of Audizine for the support and positive words you guys have provided.
The month of December was not fun. I wish I could say it was because of having to deal with family (LOL) but it wasn't. Truth is we were in and out of the hospital a total of 5 times that month, kicked off by a Medevac Flight to Children's Hospital Pittsburgh (CHP). The first and last (knock on wood) stay were both just over a week and a half each I think I was only actually home a total of 6 days during that month. Most of my AZ access was through my phone as I was waiting on DRs, or in the waiting room, or something of the sort. Typing lengthy messages is a PITA through the phone which is why I waited till now.
I wanted to also give a small special thanks to Kneel, VortexJunkie, Dan[FN]6262, Staz, A4_Quattro, and a few others for providing phone support, a few moments to just BS, or provide me with some way to take my mind off the current events in my life...even if only for a few minutes. Kaylah is our world. She's our first born, not that any other child means any less to its parents, but most parents can tell you (or relate to the feeling) the first child you treat like its made of glass & the later ones you tend to treat like a "sack of potatoes" because by then you realize they will not shatter and a little dirt will not hurt them. Anyways, my point is that there is some added stress, combined with the inability to trust strangers (Doctors/Nurses/Staff) with your kids. To them your kid is just another patient... you never really let your guard down. That is why a few minutes to just ponder something else is very much appreciated.
On 1/5/12, we were able to finally bring Kaylah home with some degree of confidence that we would not have to just turn around and go back. 1/6/12 We put up our Christmas Tree, and yesterday 1/8/12 we got to celebrate Christmas as a family. We have only been home a few days so we are still catching up with personal matters, house chores, and finally getting some rest (trying to get back on a normal schedule where you are not interrupted every 2hrs) That said, pardon my format of this post, I'm still not sure I'm thinking clear. (some may argue I never did anyway )
FYI: If anyone is curious, CHP does some pretty neat stuff for their inpatients during the month of December including pictures with Santa, the Nutcracker Ballet (done by volunteers), and presents left by Santa on Christmas Eve. They really go to great lengths to make Christmas special for the kids.
Christmas Tree on the 6th floor garden of CHP:
Believe it or not, this tree is probably about 20' tall from the ground to the tip of its star. I was standing when I took this picture.
-John
"get the biggest of everything you can. always. that's a winning combination. everytime. just ask the military." -Dan[FN]WTF
One quick note about the keychain. The one in the photo above is from the first batch we received that had a slight mistake on it. I had to re-order them, and when I did I chose a lighter blue ink as those first ones were such a dark blue it almost looked black against the gray silicone material. I'll get updated shots of them tomorrow.
wow i honestly visit this forum quiet often and i must say thanks to your thread i wouldve never known about this issue since i have no use for this calander.. however if the dude can pm me his paypal adress il gladly send a donation... and i hope thats not breaking any rules or anything..
EDIT:: is there anyway to purchase the keychain seperate??
John, I wish you guys all the best, including little Kaylah! I'm ordering a calendar and some stickers tonight. That is one tough little girl you guys have!
Need some work done on your VW/Audi in the GTA? Former VW/Audi tech. Send me an IM, let me know what you need. Timing belts, brakes, etc... Quality work, save money.
wow i honestly visit this forum quiet often and i must say thanks to your thread i wouldve never known about this issue since i have no use for this calander.. however if the dude can pm me his paypal adress il gladly send a donation... and i hope thats not breaking any rules or anything..
EDIT:: is there anyway to purchase the keychain seperate??
if you click on the store link at the top 100% of the proceeds go to them from the Stickers and the Key Chains
wow i honestly visit this forum quiet often and i must say thanks to your thread i wouldve never known about this issue since i have no use for this calander.. however if the dude can pm me his paypal adress il gladly send a donation... and i hope thats not breaking any rules or anything..
EDIT:: is there anyway to purchase the keychain seperate??
This isn't meant to be a "charity", but more about raising happy thoughts and support for our fellow Audi brother and his family.
okay thank you.. i did get a keychain... no offense to anyone i just dont use paper calanders although they are great looking and lovely cars.. the only calander i look at is the one on my iphone..
For Sale- 2004 A4 OEM Exhaust System WTB: Front Passenger Doorblade (B6 Model/Unpainted)
"If you are a true automotive enthusiast whom loves their car,
you learn to catch rides to parties and leave your car at home."- dougyfresh
I copied over John's (EErie B6) post from another thread as I not only feel it's a must read for everyone in here, but it will be followed by others when John has the time.
Thank you for sharing your story. I have a little girl at home (4 months old now) and I can't imagine her having to go through something like this. My thoughts go out to you, Kaylah, and your family.
I'll be ordering a calandar and a sticker as soon as I get home tonight. :)
Avatar has been updated. :)
~Calvin
RogueEuro
2004 Audi A4 1.8T /// 6-Speed /// quattro ///Moro Blue Pearl
What an awesome idea... order placed... thoughts and prayers to your daughter and the rest of your family
I live in Pittsburgh so if you ever have or need some time to decompress and have a beer or two and talk Audi's while you're down here, shoot me a PM and we'll get together
Last edited by A4_n00b; 01-11-2012 at 09:59 PM.
- Greg
Current:
2010 Audi S4
2008 VW Jetta Wolfsburg
2004 Audi Allroad 4.2
I wanted to also give a small special thanks to Kneel, VortexJunkie, Dan[FN]6262, Staz, A4_Quattro, and a few others for providing phone support, a few moments to just BS, or provide me with some way to take my mind off the current events in my life...
No need ot thank me John! We are friends and friends look out for each other. Remember your the the one that helped me out after my son Ryan was born. Endless BS conversations as i was looking for a way out from being a single dad as my wife was dealing with her issues in the hospital and weeks after from child birth.
Anyway this thread is about you and your family....... So MERRY Christmas to you guys and KAYLAH!!!
My Avant is proudly wearing her new stickers and the Audi key is carring its new key chain.
The whole story truly gave me goosebumps. I really hope the best for your daughter, you, and your family. I'll definitely be ordering at least one sticker and key chain, if not more. I may not know you personally or even at all here on the forum, but I'd love to contribute by purchasing these things for your daughter's benefit. As with just about everyone else who has posted, my thoughts and prayers go out to your daughter
Couldn't imagine what you're going through. Ordered keychains for the cars in showing my support to you and your family Eerie B6. Stay strong and thanks for being a part of this community.
Well I'm glad your daughter has such committed parents and I'm sure everything will work out. Good luck man if you need anything (even just car parts) let me know
Every like 20 mins or so i come back to check this thread and i am always overwhelmed with the show of support, generous offers ^, and just sheer kindness that the forum can show for a special member
John I wish you and your family the best in the years to come. I have to say I'm really moved when I see Audizine members rally behind something like this. I've seen this happen a number of times now and it never ceases to amaze me. Despite some of the flaming that goes on in the forums, there are some really great people around here. I'm proud to be a part of this community.
Kyle 2004 a4 1.8tq 6MT > I got a turbo, and a bunch of other shit.
Every like 20 mins or so i come back to check this thread and i am always overwhelmed with the show of support, generous offers ^, and just sheer kindness that the forum can show for a special member
Now we need everyone to change their Avatar, th more people see it the more we can help and spread the word
I work in Healthcare and have 2 kids and both my sister and my mother developed cancer in the last 2 years (my sister had colon cancer, my mom has nasopharyngeal tumor in treatment now). Luckily both were/ are treatable. I cannot even imagine having a child and have to go through that- the chemo alone would make you wish you were dead. Add the surgeries and the drugs that you need to get through the day and..I have no words.
Best of Luck to you guys, you'll win this.
So many awesome people in one place. Placed my order today, best 30 bucks I've spent in a very long time. Keep strong and keep fighting. You will get through it and like rollerton said, you will win this.
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Originally Posted by BerNur
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