Zachary was born February 21, 1995, our third child. We knew life was going to change a little having three children and balancing work and all their different activities. We just didn't know how much. When a cancer diagnosis hits your family it sends you into a whirlwind. Our whirlwind started two days before Zachary's first birthday when we were admitted into the hospital after I noticed Zachary wasn't able to sit up without support any longer. The doctor's were trying to be reassuring but we knew something was really wrong when they scrabbled to get him an MRI in the middle of the night. On Zach's first birthday we were told Zach had a brain tumor and they were going to operate the next day. That would be the first of many birthdays in our family that we celebrated at what became our home away from home. The surgery went fairly well and Zach was unhooked from the respiratory several days later. We had our family meeting after Zach was out of the ICU and were told he had stage 4 ependymoma brain cancer. His oncologist gave us the treatment options and his best chances of beat this was an intensive experimental chemotherapy regiment which was supposed to take 13 months.In reality, with all the set backs and infections, the treatment took 20 months.
We weren't home more than a couple days when we 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.There was many times we thought we would lose Zach during the early years but, Zachary was strong and pulled through each time we hit another roadblock.
Unfortunately after the initial treatment Zachary's tumor came back quickly. He had it removed by his expert team at CHOP at the beginning of December 1997. Despite the many complications from the surgery and all the setbacks, 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. After the holidays were over, Zachary started his six weeks of radiation. Due to infections, a brain bleed, and an ICU stay the radiation took almost 3 months to complete. We followed the radiation with another experimental treatment, stereo-tactic radiation, which they did at HUP and coordinated with a team from Boston since Zach was too fragile to travel. Zachary was the first and youngest patient treated at HUP with stereo-tactic radiation. It took Zachary two years to recover from all the intensive treatment. He learned to walk with a walker, started talking again and very willing to share his opinion with anyone who would listen.
Two weeks after Zachary finished his radiation treatment we took a trip of a lifetime to Disney World, thanks to Make a Wish Foundation and Give the Kids the World. Zach's doctor and social worker were instrumental in arranging Zach's wish very quickly because they feared he wasn't going to survive much longer. Thankfully, Zach proved us all wrong and we got to see him finally blossom into a great feisty fun-loving kid. Zach did have health issues that we dealt with on a daily basis but it was manageable. Due to the damage the tumor caused, Zach developed many GI issues and could not eat without getting sick so he was on TPN (IV feeds) most of his life. He could eventually eat in small quantities and developed a taste for McDonald's vanilla milkshakes, french fries, carrot cake, pizza and ice 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 bright big smile.
Zachary's tumor came back, once again, in the fall of 2000 but we decided to just watch it and not treat it right away since there were not many options and it was too risky.
When Zach was five and a half, he was finally well enough to attend school. He went to Easter Seals since he had a lot of learning and physical disabilities as a result of the cancer and treatment. 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, his first all friend bowling birthday party,and joined the challenger baseball league. Zach was in the hospital during the challenger league's last game but the smile on his face when his Dad brought in his trophy was priceless!
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. Zach lived with a Dilaudid PCA pump for much of that time so he had to be home schooled. We finally had to start another chemo option and Zachary began treatment again in January of 2002. Zach never really knew he had cancer until then, he just accepted everything as normal for him. Since he was 7 and had been through so much, we let Zachary have a say in his treatment. He told us that if we didn't allow us to give him the drugs then he would die and he didn't want to die. It was then that we realized that he understood much more than we thought.
We had always described Zach 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. Despite all our efforts, Zachary's body continued to slowly deteriorate as the months went on. He kept getting one infection after another and wasn't recovering fully before he would get sick again. Zachary was admitted in September and we just got this feeling he wouldn't be leaving 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 in 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.
