Update from Marianne Kostenbader – 7/15/2011
New photos of David are posted in the photo section
On Sunday July 10, 2011, after 11 months, we finally received the phone call
that 6 months ago would have been totally unexpected. David’s dad Gary,
called to say David, now 3 1/2 years old, was being discharged from the
Oncology Unit at CHOP in the morning. In the meantime, his mom and sister had
left CHOP a few days earlier to go home to get the house ready for David to
come home. With this news, members of the flight team came together to
organize a crew to transport David home by ambulance, courteousy of Easton
Emergency Corps, Jon Nicholas, Rich Kuklentz and Rich Becker. After some
unexpected (though always expected at this point) delays with the pharmacy,
David was heading home by 12:30 p.m that afternoon. During his 3 hour ride
home, he was amused while watching cartoons on a DVD player. For the time
being, there will be Bayada nursing coverage 7 days/week/12 hours a day to
assist with medications and treatment regimens. David still is not talking
nor eating. He still has his G-J tube for feedings. It is his mom and dad’s
hope that these issues will resolve themselves after being home in a familiar,
non-threatening environment. During these first few days home, David for the
first time since last summer has been able to go out on the swings and play in
the sand box. Though frightened at first with these “fun” activities, he
quickly seemed to remember and enjoy this familiar type of playtime. It’s
expected that every three months, David will have to be re admitted to CHOP
for brief periods to have treatments and additional testing completed. The
first 18 months after the completion of chemotherapy are the most critical in
determining his long term out come. It is expected that over the next 1 1/2 -
2 years, David’s hearing will significantly diminish with the probability of
needing hearing adds. This loss is due to the side effects of chemotherapy.
Despite his expected hearing loss, David is HOME! Upon being diagnosed in
August, 2010, his survival was predicted to be 6 – 8 weeks. The new pictures
posted were taken after David’s arrival home on Monday. He is now taller than
his 5 year-old sister, Jennifer! Expenses and medical bills still are
mounting as donations are still greatly appreciated.
Update from Marianne Kostenbader – 5/18/2011
Well everyone, it’s been quite awhile since I’ve updated this website but I’d like to take this opportunity to bring the many of you who have been following the updates on little David Bryan since his brain tumor diagnosis last August……
My last posting was in December, the dead of winter. We are now in the middle of wonderful spring weather. David has defied the odds of all of his physicians. Many of those physicians who treated David in the early days of his admission have stopped by with amazement that he is “still with us”. I think it has something to do with the “family genes”, David’s fight to live (after all, when does a child listen to grown ups), his family’s strength to live and the prayers of not only hundreds but of thousands of people across the country who have come to know his story. Many people who have never met David or his family have been praying for him and have even held fundraisers for him. One of the prayer groups across the country held a Bingo fundraiser for David raising a significant amount of money to help with the millions of dollars incurred in medical expenses. I also contacted the local cable company (in December) to offer a discount to the family as all cable and internet were turned off to help cut family expenses, but unfortunately they were unable to assist with this request. Do to the inability to discount their service, they actually contacted their parent company about David’s story. About 1 month ago, I received a phone call from that parent company saying they were sympathetic to David’s cause and they would be holding a “dress down” day that week for the company employees with all donations going to the Bryan Family. So, to the many who have graciously donated, I thank you!
Now onto David! Well, he spent the winter and early spring going through very harsh chemotherapy treatments. Gary would spend all of his days off at David’s bedside when not working. During the days Gary would work, his mom, Michelle and his sister Jennifer would be at his bedside from 3:30 a.m – midnight everyday to comfort and cheer David on. He continued with the side effects of the chemo, hair loss, diarrhea, G/J tube becoming dislodged, etc. During this time, he remained on strict isolation in the Oncology Unit of CHOP. After the chemo treatments ended, David began the Proton Beam treatments which still continue today. Unfortunately as a result of the chemo, there may be some permanent damage which may occur over the next 1 – 2 years. Hearing loss is one of those side effects which is expected to occur. Despite the chemo treatments, David has put on several kilograms! On a happier note, David left CHOP approximately 2 weeks ago and is now a patient at the Seashore House. He continues to remain on isolation (not so bad as this means David has his own private room!) and is now receiving very intense physical therapy. At his side every step of the way is his sister, Jennifer! She pushes him as hard if not harder than the physical therapist AND is his personal cheerleader!
This past Sunday was Mother’s Day. Michelle spent her first Mother’s Day away from home but, with David and Jennifer. Despite the conditions, she still had the two of life’s most precious gifts with her at her side on that special day. Gary has said there is actually now some light at the end of this cruel tunnel which they have endured over the last 9 months…..doctors are now talking about David going HOME sometime in June. Again as Gary always says, this too can always change. Frequently they go 2 steps ahead and 5 steps backwards with treatement. So, we continue to keep the Bryan Family in our thoughts and prayers. I can’t help but to mention one of our pilots who we call “Johnny Who”. From day one, he has told all of us “medical people”, David’s coming home, he’s going to survive. For several months, of course because we all are of the medical profession, none of us believed him. But Johnny Who, I’m convinced to throw away all the scientific knowledge and evidence to believe in what you’ve believed in all along!
Updated 12/28/2010 –
As of today, David continues to remain hospitalized in CHOP where he has just spent (not celebrated) Christmas. He has now been hospitalized 4 1/2 months with approximately the last 3 months on the Oncology Unit. There were plans for him to have been moved out to the Seashore House for intensive physical and occupational therapy but his health never improved enough for that to be able to happen. His dad Gary is back to work flying the friendly skies of Monroe County. On his off time, he is at David’s beside with Michelle and Jennifer. Because of his continued vomiting, crying and severe pain over the last several weeks, David had another MRI last week which showed an increase in the size of the left ventricle with a shift of his brain. With these results, David was taken back to surgery where he had a T-system connect another drain with the existing drain in his brain. While this procedure was being done, another biopsy of the tumor was taken. On Friday, some positive news….the outer portion of the tumor had died! This was due to the heavy doses of chemotherapy which David has been receiving. With this result, Gary and Michelle discussed with the Neurosurgeon another risky, invasive surgical procedure being done to remove part/all of the existing tumor. So yesterday, December 27th, David went back to the OR for a 6 hour procedure. There was some apprehension if David would even survive the procedure. In speaking to Gary last evening, David came through the surgery well. He has again been transferred to the PICU where he will hopefully spend only the next 1 – 2 days before being transferred back to the Oncology Unit. By 9:00 p.m last evening, David was speaking, able to recognize mom, dad and Jennifer and was evening trying to pull out some of the tubing in his arm. A repeat MRI will be done today to see how much of the tumor was able to be removed. Gary and Michelle were told that if much of the tumor was removed, hopefully he will be able to survive another 4 – 5 years to receive radiation which may totally eradicate the cancer. So please everyone, as we enter 2011, let’s continue to remember the entire Bryan family in your thought and prayers.
Updated 11/20/2010 –
The LVH MedEvac family has created this website and blog to keep everyone informed about LVH MedEvac Pilot Gary Bryan’s family. His son David was admitted to the PICU at CHOP on August 10th after being diagnosed at Pocono Medical Center’s ER with an aggressive, incurable brain tumor. Prior to this, David had been a normal, healthy 2 1/2 year active little boy. It’s now 4 1/2 months later and David is still hospitalized at CHOP in the Oncology Unit. He was to have been transferred twice to the Sea Shore House for rehab but due to set backs in his condition, this never occurred. His prognosis is extremely grim. He just recently began under going a double dose of chemotherapy which had been delayed due to his immunosuppressed state. David’s best friend is his 4 year-old sister, Jennifer. She has become quite the “little nurse” for her brother. As he endures the agonizing physical therapy treatments, Jennifer is there to rub his back and comfort David. Sadly the seasons are passing…..when David was admitted to CHOP, it was in the heat of the summer. It is now fall leading into winter and he is still there, fighting the battle no 3 year-old should ever be faced with. David and Jennifer both “had”, not celebrated birthdays in the hospital. While David has been at CHOP, he has endured 6 surgeries, battled meningitis, had a feeding tube inserted in his stomach with an associated infection. Please keep David and his family in your prayers!
If you would like to help the Bryan family with a donation, please click on the “Make A Donation” button. The entire MedEvac family thanks you for your support.
Update 09/13/2010 – The Pocono Record published a story about the Bryan family today. It can viewed here.
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