Please meet Brayden. Brayden was a  5 1/2 and suffers from ganglioneuroblastoma a rare tumor that is seldom seen in North America.Brayden was sent home to enjoy what quality of life he has left. Sadly while preparing to have Brayden on our webpage he passed away. In the comforts of his own home being the care free little boy he always was. His family would appreciate any words of comfort that you may share with them and Brayden's two older sisters. Please send words of comfort to the address below. Brayden's mom wrote a biography on  Brayden and I would like everyone out there to know who Brayden was. Leone and Greg's little boy.
 

 The following biography was written by Brayden's mom.
 

Brayden was born on May 15th 1994 to Leone and Greg.  He joined his sisters Katelin, who was born on 21st of September 1988 and Rayanne who was born  on September 3 1990.  The pregnancy with him was normal and he weighed in at almost ten pounds at birth.  All seemed to be going well with him until early 98.  He started waking up at night screaming uncontrollably.  We thought that it could be night terrors or some sort of phase he was going through. The doctor was puzzled also.  We did notice that he had developed a slight limp and were sent to an orthopedic surgeon who said that he did appear to have something wrong with one of his hips, and would likely grow out of it and that we should just watch his progress.
 

By March of 98, his sleeping habits hadn’t improved much and then he developed a very stiff neck and was unable to lift his head or turn it.  We were then referred to a pediatrician who immediately suspected a brain tumor.  After having him checked for intercranial pressure, which was non existent, we were sent for a CAT scan.  The CT scan showed nothing unusual in his brain however this stumped the neurologist, and he scheduled an emergency MRI of his spine within four days.  The results of the MRI showed a very long tumor within Brayden’s spinal cord (from C5 to T8).  The neurosurgeon felt that from the appearance of the tumor that it would be benign.  Within two weeks, Brayden was in a fourteen hour surgery to try and remove as much of the tumor as possible (90% was removed).  We were told that there was the possibility that he would not walk again due to the surgery but if left the tumor would likely paralyze him eventually.  The pathology on the tumor was very difficult to determine.  It appeared to have some malignant and some benign cells in it.  Finally it was confirmed that it was ganglioneuroblastoma, a very rare type of tumor that had only been seen once before in North America.  Shortly after his fourth birthday, we started chemotherapy in a hospital that was three hours away from home.  Luckily my sister lives there and we were able to stay with her.  By late August we were done the four rounds of chemo and an MRI shortly thereafter determined that the tumor was gone and it appeared that all that was left was some scar tissue.  We had another follow –up MRI in December and while we were there, we were asked to participate in a study our neurologist was conducting.  He wanted an MRI of a healthy brain to compare to kids who have seizures.  Since we were getting an MRI done of Brayden’s spine anyway, we agreed to let them do his head also.  Well, I believe
that God watches these children and put us in that study for a reason.  The MRI of his brain showed about five small lesions there.  Within a few weeks, we had started chemo again.  After four treatments, the MRI showed that the lesions were getting smaller, so we did four more treatments.  This gave Brayden the maximum number of chemo treatments that were planned-twelve in all.  The MRI done in July of 99 showed that all of the original lesions were now gone, however, one more had appeared that wasn’t there before.  This indicated that his tumor had become resistant to the chemo drugs.  We decided to put him on an oral medication that has been shown to mature small lesions such as this.   After four days on this drug, he developed severe headaches and became lethargic.  We took him to the hospital for a check up and another whirlwind began.  We did a head x-ray, which was inconclusive, and were asked to stay for a CAT scan the following day.  There it was found that Brayden had a “brain-bleed” and following emergency surgery to implant a shunt, and an MRI was booked immediately.  This MRI showed that within two months, that one tiny lesion in his brain had multiplied and had spread throughout his central nervous system.  That same day, Brayden had a mask made for radiation treatments, with a simulation done the following day.  On his sister, Rayanne’s ninth birthday we started radiation treatments-the first of twelve.  The treatments were done one day before his other sister: Katelin’s birthday and we went home.  We were told that it could take up to three months to tell if the radiation treatments were successful, and that normally twelve treatments to the head and spine would take care of neuroblastoma tumors.
 

So now we waited.  In October we started taking him to a kinesiologist in a neighboring town and started some herbal therapy on him.  He did amazingly well on them and some of his blood counts rose to normal levels in no time.  He started attending kindergarten but was having a very tough time being separated from me.  His appetite had never really returned after the radiation, but with talking to other parents of cancer kids, this has appeared to be a common side effect.  We did another MRI on November 10 99 and the results from that were encouraging.  It appeared that the lesions in his brain had started to shrink, however, the spine had remained the same.  We requested another MRI be done after Christmas- hoping that time would allow the remaining lesions to disappear.  Sadly, that wasn’t the case.  The next MRI done on January 12 2000, showed that the tumor activity in his central nervous system had increased with two large tumors developing in his brain, one in his right temporal lobe and one in his brain stem.
 

We were told by his oncologist the following day to focus on “quality of life”.  Since that day he has become bedridden and I am with him almost constantly.  The right side of his face has now become paralyzed and he is very thin.  The only thing he is eating now is “creamy, cheesy macaroni” that his dad makes or dinosaur porridge.  He has also requested Shirley Temples for a drink, so now I have become very proficient at making them.

We feel that he has a short time left with us and he has indicated that he is ready
to go to Heaven.  His light grows dimmer every day but I know that he is going to
a better place and we will miss him terribly.  Our girls will have a lot to deal with
and we ask that people send some encouraging words to them They both enjoy
reading and collect Beanie Babies.
God bless you all! Leone ( Brayden’s Mom)