June 18th 2001 started out just like any other day. Coming off of a Fathers day weekend in which we celebrated Spencers first birthday, everything was great. Unfortunately, the day ended very differently.
After a day of playtime with Mommy and a bath from Daddy, Spencer was ready for a goodnight bottle and some sweet dreams. Uncharacteristic of him, taking a bottle was very difficult this day. After much anguish and crying we started getting concerned. This was not Spencer. He was not himself. And then as quick as our fears arose, they vanished when Spencer grabbed his bottle and drank it right down. That was the very moment when a parents worst nightmare began for Adrienne and me.
The convulsions started almost as soon as he let go of the bottle, followed by vomiting. Immediately we new something was very wrong, a 911 call and the Paramedics came within minutes. By now, the vomiting had stopped and Spencer was very lethargic as they examined him, to anyone else he would have seemed fine, but we knew, this was not Spencer.
The next few hours were a blur of ambulance rides and emergency room procedures, nothing was found, but Adrienne knew, somehow, after all the tests, she still knew there was something wrong, a Mother just knows. We insisted on a CT scan hoping for the best; what we got, was exactly the opposite. The CT scan revealed a tumor the size of a tennis ball in the back of Spencers head. Before we could even digest what was happening, we were told that a Pediatric Neurology team was coming to take Spencer to Johns Hopkins Hospital right away. That was when we also were told that we would not be able to accompany Spencer and that another ambulance would take us. Together just the two of us for the first time, helpless.
Too many things went through our heads to even decipher any one of them. The one thing we did know was that we needed to be with Spencer and that he needed us. When we arrived at Johns Hopkins we were whisked to the Pediatric Intensive care unit where we found him hooked up to machines and monitors that just did not seem real. With hearts racing we began to know more. Spencer would require surgery to remove the tumor. Surgery? OK, if thats what we need to do we are in the right place, we thought out loud to each other. We then went through a battery of consultations and meetings with surgeons, without a minute to stop and breath. Either one of us would have traded places with him without thinking about it. They would have to put him under to do the MRI. Upon the results, surgery was to commence. Had we known that was the last time we would have seen his eyes, we would have told him how proud we were to be his parents and how much we loved him. The MRI only confirmed what we already knew; Spencer would have to have surgery to remove the tumor. The one bright spot to this point was that Spencers tumor was a very condensed mass and should be able to be removed in its entirety. That moment we felt some relief. We are in the best hospital with the best doctors and anything we could do to make Spencer better was what we needed to do.
Thirty-six hours after the nightmare began with surgery scheduled for early morning we attempted to get some rest, but were again delivered another blow. At 1:00 AM in the early morning hours of June 20th Spencers tumor had hemorrhaged and he would have to have stint put in to stop the bleeding and control the swelling on his brain. Surgery was coming sooner than we had expected; the Surgeons were on their way.
With an anticipated surgery time of between five and fifteen hours we knew when the surgeons appeared after just ninety minutes the news was not good. The surgeons encountered something very rare for a year old child - Ependymoblastoma, a P.N.E.T tumor (Primitive Neuroectodermal Tumor). A very rare and very malignant tumor. He would never wake up.
The next twelve hours were somewhat of a blur. We sat bedside with Spencer his heart was beating strong, but the swelling in his head could not be stopped, we had some decisions to make. We knew he was not coming back, his brain could not keep functioning. We would donate his organs. We wanted him to live on in the lives of others and perhaps save another family from losing their baby. It was then that Spencer said goodbye and made some decisions for us.
Adrienne and I were holding his hands and rubbing his legs when he kicked his leg in response to her touch. We immediately summoned the doctors and nurses and again Spencer kicked his leg in response to Adrienne's touch. Watching in amazement the doctors claimed we could be witnessing a miracle. But as quickly as he had responded to her touch, his body went limp and it was then we knew he had just said goodbye.
What followed was a family meeting with all the doctors involved in Spencers care and the transplant surgeons. It was at that time we found out that due to the rare nature of Spencers tumor his organs would not be eligible for transplant. Another blow, but we knew in our hearts, he would have wanted to help other children. Then came the morning of June 21, four days after we got the news that changed us forever. Spencers life support would be removed.
It was the longest 6 minutes of our lives. He would leave this world as he came into it, as part of us. We held him tightly and said goodbye to our little boy that blessed our lives and changed us forever.
We share this story for all to read as a source of inspiration. Spencers fight against this deadly disease has given us the strength to assist us in searching for a cure and to make the lives of other children suffering from cancer and their families better. We truly believe that someday we can be a part of finding a cure. We will always be Spencers parents, but now we have an obligation to be as good of parents to Spencers spirit as we would have in his life.
We thank all of those who have supported Spencers Friends Foundation and its mission. We look forward to your continued support.
Mark & Adrienne Gleason