|Zachary Thomas Windle
| February 21, 1995 October 11, 2002
Zachary was born, February 21, 1995 a healthy boy, our third child. We sensed something was really wrong with Zach just a few
days before his first birthday and our pediatrician had Zachary admitted to CHOP. On his first birthday we were told that Zach had a
brain tumor and they were going to operate the next day. That would be the first of many birthdays in our immediate family which
was celebrated at what became our home away from home. The surgery went fairly well and he was unhooked from the respirator
several days later. Zachary did suffer many developmental set backs as the result of the surgery and the damage the tumor had
already caused. We had our family meeting after he was out of intensive care and were told he had stage 4 ependymoma brain
cancer and our neuro-oncologist went over the treatment options. It was an unbelievable painful experience to hear what our little
one year old would have to endure in order to fight to live. We weren't home a couple of days and we already hit our first bump in
the road: Zach had to be readmitted and have a VP shunt placed to relieve the pressure in his brain.
Zachary and our family experienced many bumps in the road to try to beat the cancer during the next couple of years. His initial
intensive experimental chemotherapy and his maintenance chemo took 20 months to complete since he was hospitalized often for
complications and many infections. We could tell if Zach was ready to go home from the hospital by how deep his belly laugh would
be when he was entertaining everyone! There was many times we thought we would lose him during those early years, but, Zachary
was strong and pulled through. Unfortunately after the initial treatment Zachary's tumor came back quickly. He had it removed at the
beginning of December l997 and despite the many complications, we made it home two days before Christmas. He still required a lot
of medical treatment and he had stopped talking due to the trauma, but we were home! His favorite toy that Christmas was a remote
control dump truck Santa brought for him. After the holidays were over, Zachary started his six weeks of radiation which took
almost three months due to many complications as the result of infections and ICU stays. Then, we immediately followed the
radiation with another experimental treatment, stereo tactic radiation which gratefully they accommodated Zachary at HUP since he
was too sick to travel to Boston to get it done. It took Zachary almost another two years to recover from all the intensive treatment,
but it was worth it!
We took the trip of a life time to Disney World, thanks to Make a Wish Foundation and Give the Kids the World, two weeks after
Zachary had finished his radiation treatments because we really didn't think he was going to live much longer. Thankfully, Zachary
proved us wrong once again and we got to see him finally blossom into a great feisty fun-loving kid. Zachary eventually learned to
walk with the use of a walker and could, after many years, walk for short periods by himself. He eventually started to talk and then
we couldn't stop him! But, unfortunately, he developed many GI problems and couldn't eat without getting sick, so Zach was on
TPN (IV feds) most of his life. Zachary could eventually eat in small quantities and he developed a taste for McDonald's vanilla
milkshakes, french fries, carrot cake, pizza and iced tea. Despite all the medical problems he continued to have, he grew up to be a
very loving, caring, fun kid with quite a personality! He would worm his way into everyone's heart with a tilt of his head and his
bright big smile. He conned many people out of all sorts of things---a date book, pens, folders, "important" papers, money found in
your pocket, pictures, a vase, medical supplies, eyeglass cases---you name it he talked you out of it with his tiny voice saying "Please,
I really, really need to have it!"
Zachary's tumor came back in the fall of 2000 but we decided to just watch it and not treat the tumor right away since it was to
risky. We wanted to wait until we definitely had to treat it since there weren't many treatment options due to all Zach's existing
medical problems. When Zach was five and a half, he was finally well enough to attend nursery school. He went to Easter Seals
since he had a lot of learning disabilities and physical disabilities. It turned out to be the best year of his life. He finally was able to
enjoy the "normal" things in life like school friends and his first all friend party at the local bowling alley, which accommodated his
special needs. He also joined a challenger baseball league and had a lot of fun. Zachary was in the hospital during the challenger
league's last game but the smile on his face when his Daddy brought in his trophy was priceless! He even teased his brother about
being the first one to get a baseball trophy. Luckily my older son's team finally won the championship that year so they could both
show off their trophies.
Zachary endured quite a lot over the last eighteen months of his life due to all the many complicated medical issues that had
developed over the years. He fought many infections, underwent many procedures/operations and was in a tremendous amount of
pain and lived with a Dilaudid PCA pump for much of that time, so Zach was home schooled. We finally had to start another chemo
option and Zachary began treatment again in Jan. 2002. Zach never knew he had cancer until a couple months before he started his
new chemo. Since he was seven and he had been through so much, we let Zachary have a say in his treatment. He told us that if he
didn't allow us to give him the drugs then he would die. It was then that we realized that he understood much more than we
thought. We always described Zachary as a seven year old boy who had the physical appearance of a 3 year old, who talked like he
was 47 but who had the body of a 70 year old (I was told by one of the doctor's --a 90 yr. old!).
Despite all our efforts, Zachary's body continued to slowly deteriorate as the months went on. He kept getting one infection after
another and just wasn't recovering fully before he would get sick again. Zachary was admitted in Sept. and we just got this feeling he
wouldn't be leaving there this time. He fought really hard for a couple of weeks, he tried to carry on but he just couldn't. So, despite
all the efforts of his entire CHOP team and his family, Zachary died on Friday, October 11, 2002 at 10:59pm. He died in the arms of
his mother being sung to his eternal resting place, surrounded by the love of his family-- exactly liked he wanted it.
Zachary accomplished quite a bit over the seven and half years of his life because he never let his illness get in the way of what he
wanted to do. During his life he was not only a fun-loving energetic amazing kid but also a carpenter,a glue and masking tape
specialist, businessman, medical assistant, matchbox car collector, construction contractor and so much more!!!! As our daughter
said " even though he was not a real teacher, he taught her more things about life then any real teacher she has ever had". He taught
our family, the staff at CHOP and all the people he touched in his short life a lot about life, love, laughter and hope.
We hope to share his spirit of caring with many other children.