This is a story about my Baby, Alexander. He was born in Maine on December 8th of 1992, a BIG BOY, all 8lbs. 2oz. he was such a healthy baby and never had an ear infection or really anything other than the sniffles. When Alex was 3 years old I realized how bright he was when he was speaking in full sentences and also loved to do the Math Workbooks, he was reading by age 4 and I will always remember his 1st day in Kindegarden, he got off the bus, got into the car and I asked "How was your first day?" He put his head in his hand and was shaking his head and said "Mom, some of those kids did not know how to write their own name" which of course made me laugh a little, he was always so grown up, he had an old soul. When Alex was 10 years old we were taking him back and forth to the Doctors because he was complaining of Headaches, Nausea, and lost ALOT of weight all of a sudden, he went from 80 lbs. to 45lbs. at his lowest. The Doctor set him up for a Cat Scan and Eye Doctor Appt. Well, they Cat scanned his belly because of the Nausea and we went to the Eye Doctor and everything there was fine, they saw nothing, two weeks went by and Alex was sleeping almost all the time and I was very concerned.
So, we went back to the Doctor and I INSISTED on a MRI, they tried to tell me that all Alex needed was to see a Psychiatrist because it is all in his head. Well, he was right about something, it was all in his Head, we went to Maine Medical Center on Father's Day of 2003 and had an MRI done and while he was in the MRI, I saw 3 Doctors run past me in the waiting area and they had 3 MRI machines there so it could not possibly be for Alex, and then the Doctors came out and Asked for me and My Mom, and they said that Alex had a mass the size of a large lemon in the center of his brain. It was squashing his Pituitary Gland, pressing on his brain stem, and also not letting his spinal fluid circulate.
They wheeled Alex out of the MRI and here I am trying to be brave for him and he had this HUGE smile on his face, like he was soo glad that there was a Diagnosis finally. We went upstairs and started Radiation and Chemo, and in January of 2004 we celebrated the news that his MRI looked clear and go on about life as normal. Being with a sick child and treatments you kind of forget what that means. So, we went on a Make-A-Wish trip to Disney and he loved it, his feeling well was short-lived.
On February 3rd of 2005 Alex was getting ready to go to school and he came in the bedroom and was speaking to my Mom and looking way above her head and she said "Alex, can you look at me" and he said "Gram, I am looking at you" So back into the hospital, we found 5 small tumors this time and we tried several Chemo's to get rid of it including one that put him into a Vegitative State for about 20 hours called Icefosfimide.
We were sent down to Tufts NEMC in April of 2005 and were told that the only way he would get better would be a Stem Cell transplant where they take all of the good stuff out of his blood, let it multiply in a lab and put it back at a later date, so we did get the Stem Cells withdrawn and then we were going to go get them back in a few months, well we went back on July 5th to Tufts after we had the go-ahead from Maine Childrens Cancer Program. He was going to be in Isolation for 2 months, and we were fine with that, we got there on July 5th and we were seen by the Neuro-Opthamoligist and he told us that we needed to have an MRI cause he did not like the fact that Alex could not see. The tumors were back and I think in that moment Alex realized that he would not survive this, even though he did not let us know, cause he knew we would be sad.
When we returned to Maine on July 7th we spoke to MANY specialist at UCLA, NYU Medical Center, and St. Judes. They all concured with our Doctor and they decided to try the same protocol that Lance Armstrong tried and that was successful with curing his cancer. We did 2 treatments and everything seemed to go well, no nausea. So, we went home in between treatments and then Alex started running a fever, back to the hospital we went and a few hours later he had 2 major seizures, the Doctors and Nurses said that it was a miracle and that they did not think he would make it through the night, well he did. We had a family meeting with the Doctors and they said that there was nothing else that could be done, Alex would die from this. So, we told Alex and he said that he had known for weeks that this is what was going to take him to Heaven. Alex did have one request, he had wanted to go to John's Hopkins to be a Research Scientist and in fact was tested by them because he was in the top 2% in the Nation for Science and Math, he was tested 2 weeks before his re-diagnosis, and scored a 144 IQ. Alex's request was that we donate his brain to Science, he said that if he could not Physically go there that his Brain Could go there and maybe they could learn something about Germinoma from him.
The early morning hours of October 2nd at about 4 am I was laying beside Alex in his bed and I asked him if he was scared, and he shook his head "Yes" I told him that it is ok to be scared, and that he was scared because he was taking a trip by himself, and no one could tell him how it would be and how he was going to get there, but that I would hold his hand, no matter how hard things got and I would not let go until I felt him let go of my hand then I would know that he had someone elses hand on the other side. Little did I know that would be our last conversation. On October 3rd of 2005 at 1am, Alex left us for Heaven, holding my hand like I promised. Alex was so brave in his fight and I believe that there should be a veterans day for the children who have fought Cancer, it is an entirely differant war, but the fight is the same. Alex is Deeply missed, by his family, friends, and school mates. I know he is up in Heaven holding onto my Grandpa's hand and finding the flowers to plant for me in his heavenly garden.
Alex, my heart aches everyday, I know I will see you again someday and that brings some relief. I love you soo much Bunkie(nick name).
P.S. Alex's favorite song was 3 wooden crosses by Randy Travis and the end of the song states that "It's not what you take from this world when your leaving, but what you leave behind you when you go" It is soo fitting!