Alex Poust
3-19-1989 to 12-3-2004
Dear Friends:
Alex was born in Erie, PA, third child of Bonnie and Allan, little brother to almost 5 year old Amy and 2 1/2 year old Greg. He was an active, intelligent child, very gifted athletically, especially in swimming and soccer, very interested in animals of every kind.
When Alex was four he started to have repeated ear infections. Despite my pleading with the pediatrician, taking him to the ENT and to two different allergists, we found the most help was from controlling his diet. If he did not eat sugar or anything else on the "no-no" list he did not have headaches and was not over active.
In January of 1996, when Alex was 6, he presented with flu like symptoms and a tennis ball sized tumor was discovered. He was life flighted to Children's Hospital of Pittsburgh. He was scared, but brave and had to fly to Pittsburgh without Mom or Dad as the helicopter was full of medical personnel. The fear was that the tumor would burst.
After surgery, the next day, we were told that the growth was cancer. Three days later we learned it was the worst type of adult brain cancer, glioblastoma. I was told that he had a 30% chance of surviving 5 years.
Four rounds of chemo at Children's each followed by weeks of recovery at an Erie hospital and then 33 radiation treatments in Pittsburgh were behind us when only three weeks later, at the end of July, a routine MRI showed that there was more suspected cancer. After a second surgery, it was confirmed that the gliobastoma was back. We were advised by Childrens' to take him home to die. For recurring glio, the survival rate is 1% at five years, even with treatment.
Through Alex's neurosurgeon we found a protocol at Sloan Kettering in NYC that offered a 30% chance. This seemed like a real chance to us and we took Alex to NYC in September of 1996. At the same time we moved from Erie to Cranberry Township. Alex had both stem cell and bone marrow transplants and was not expected to live, due to VOD (liver) complications. His kidneys failed and he was very sick, but he survived and was stable enough to come back to Pittsburgh by private medical plane in November.
After being back in Pittsburgh about a week, he had a 7 minute cardiac arrest on the floor at Children's due to excess fluid on his heart. After a touch and go week on the respirator, he began to slowly recover.
Alex was skin and bones, could not even sit up, or stand, much less walk for several months, but he never gave up. He looked forward to being normal again.
Alex's platelets never fully recovered. He got a few months, from the fall of 1998 to the spring of 1999 when his platelets were so close to normal that he was allowed all activities as long as he wore head protection. He got to play indoor and outdoor soccer, and basketball. He got to ride his bike and roller blade. He got to do gym class and recess at school. He got to do cub scouts. He was so happy to be doing normal things. We thought we were close to full recovery.
In February of 1999, Alex's Dad, Allan, died unexpectedly and suddenly while out running. After that, Alex's platelets stopped rising and fell to levels that put a stop to all his soccer, basketball, bike riding, gym classes, recess, etc.
Alex had a hard life, but he made the best of it. We always tried to see the glass as half full and it worked to give Alex more happy times than sad, despite the obstacles. School was miserable for Alex as he had developed learning disabilities from the radiation.
Alex was so proud of himself that he was "the sickest child that the doctors in NYC had ever had that survived". Due to Alex's success with that protocol, other children were sent to NYC, and later, it was brought to Pittsburgh so it could help more children. Alex was so pleased that the protocol was brought here because of him.
After Allan died, Alex never regained the platelets and the stamina he had those few months, 1998-1999. He fatigued easily and could never ride his bike, etc. again. He longed to do those things, but never complained. We kept hoping that someday he could. We had periods of relative calm with periods of one medical crisis after another.
In the spring of 2003, he was not well and had repeated fevers, etc. His blood work was not right. His white count was rising as the platelets dropped still further.
By the fall of 2003, Children's was telling me that they feared that Alex was developing Myeldisplastic syndrome and that if he was, there was nothing that could be done about it due to the drastic treatments he had already survived.
Since we had found help outside of Pittsburgh before, I began to look outside again for a second opinion. Both MD Anderson (Houston) and Sloan Kettering (NYC) thought there was something we could do.
In March of 2004, I took Alex to MD Anderson Cancer Center in Houston, Texas and they diagnosed myelodisplastic syndrome and recommended transplant if Alex's organ systems were adequate to survive this. They said that it could transform to Leukemia at any time and that if it transformed his chances would go way down.
Alex loved every minute of being the Cranberry Cup kid in 2004. This gave him many happy times.
We had finally completed testing and Alex was deemed able to do the transplant when his condition transformed to leukemia and he became too sick to travel to Houston for transplant. We did chemo here, but they could not get Alex into remission. The leukemia killed him December 3, 2004.
The doctors told me that the leukemia that killed him was from the treatments that had cured the brain cancer. He beat the odds with the brain cancer, only to have the cure kill him. Nonetheless, that treatment bought him 8 years.
Alex had a lot of pain those last few months due to an enlarged spleen and a blood clot that developed in his leg. At one point Alex told me, "Mom, you don't have to feel my pain". He was always trying to look out for me!
Alex had a big heart. He was very observant and very smart. No one could beat him at Chinese checkers.
He told me many times a day, "I love you, Mom" so, once, I asked him why he did that. He said, "Mom, you never know when it will be the last time."
When he was dying, he woke up for a minute at one point and seeing several people in the room, he said, "Thanks, everyone for coming". He loved company.
He loved to go fishing and to visit Living Treasures Animal Park in New Castle. He loved to travel, especially trips to zoos and to Sea World. He loved anything related to animals. He spent a lot of time with his pet Guinea Pig and his hermit crabs.
He enjoyed the Harry Potter stories, helicopters and looking at the night sky with his telescope. He loved to collect key chains, coins, cards ...He loved fixing things and loved looking at and talking me into buying him tools. He loved Penguin hockey games and was very happy when Mario Lemieux visited him at the hospital. He had two speeds, all out and done. There was no holding back or pacing himself. He was able to enjoy the things that he could do and not cry about the ones he couldn't.
He is sadly missed. He was always telling others not to give up and he followed that philosophy himself. He was quick to smile and slow to complain. Through all the treatments, shots, pain, hospital stays, no Dad, etc., he did not feel sorry for himself. He made the best of every situation. He was brave in life and in death.