Our Journey
For us, the journey started almost a year before my son was diagnosed with cancer.
I was a single mother with three beautiful children. I worked full-time, and went to college full-time.
When Michael was diagnosed, my children were 4, 3 and 2 years old. Michael was the 2-year-old. He had stopped sleeping though
the night quite some time before he was diagnosed. He would take a 20 minute nap during the day and at night, he only slept between
3 and 5 hours. Having the two older children, I knew there was something unusual about this.
I had talked to his doctor about it a number of times. At first, she said that it sounded like he had ADHD, but went on to tell me that he could not be tested for it until he was 5. Each time I would bring up the issue of him not sleeping, she gave me something new to try.
This went on for at least 9 months!
Unfortunately, I was young, and very naïve. I thought that doctors knew everything. That they could fix anything. I never even thought to question the advice she gave me. I truly believed that she knew what she was talking about.
Never in a million years did I think there was really something wrong with my 2-year-old son. Little did I know that his doctor was not a God. She had no clue what was going on with him and worse yet, she had taken no steps to find out.
On January 22, 2003 in a matter of hours my life changed forever. Michael went to bed on the 21st just like any other night. He had
been running through the house playing and laughing. When we woke on the 22nd, he was a little fussy. The entire ride to daycare,
he was having a temper tantrum - VERY unlike him. I chalked it up to the fussiness of the morning.
The daycare called for him to be picked up. He had vomitted several times already. I called the doctor and picked him up. The doctor suggested that I pick up some Pedialite because there was a virus going around, she didn't even want to see him! So I picked up the Pedialite, picked up Michael and we headed home. All of this was by 10 am.
At home, he became more and more lethargic. I tried to soothe him with a bath and he nearly fell asleep in the tub.
By 2:00, Michael still was showing no signs of coming around at all. I took him to the Newark Emergency room. I knew that something was not right, but I thought that he just had the flu since that was what his doctor had told me.
While the doctor at the emergency room was examining him, he had a seizure. Now, the Newark Emergency room is a satellite office and they were not equipped to care for him the instant that it became more than the flu. He was immediately transported to the Christiana hospital. I had no idea what was going on, I felt so lost and helpless.
By the time that I arrived at the hospital there were so many people around him, and they were already preparing to put him on a ventilator.
OMG! My heart stopped. All I could think was "what the hell is going on?"
They sent him for a CAT scan which showed that he had a tumor on his brain. My head was spinning I could not believe what the
doctors were telling me. They worked to stabilize him and get him ready to be moved again.
This time, he was transported to AI DuPont Hospital for Children where he received another CAT scan. After looking at the results,
the doctors reported that the tumor was located on the top of his brain, "the best possible spot for a tumor". They were confident that
they would be able to remove it easily. The CAT scan also showed that he had fluid on the brain. They inserted a drip tube in his
head to help release the pressure off his brain.
The next morning, which was now January 23, they did an MRI to get a better look at the tumor. He had not yet regained
consciousness.
The MRI showed that the tumor was not located on top of his brain. Instead it was located on his brain steam - "the worst possible
spot for a tumor".
The doctors were now 99% sure that the tumor was cancerous. He was scheduled for surgery the next day. He underwent 15 ½ hours
of surgery.
Because of the location of the tumor the surgeons were only able to remove about 40% of the tumor. He was still in critical condition
after the surgery. The doctors told us that if he was to survive the surgery, he would only have 6 months. We lived at the hospital until Michael woke up several days later.
Once he woke up, I started taking the girls home at night to sleep in their own beds while my mother stayed at the hospital.
By February 11 he had recovered and was strong enough to come home. He came home with 10 different medications. One of
these was a shot that he had to get every night. At only 2 1/2-years-old, my thriving child had changed, literally overnight.
I had to quit my job and quit school. There was no way for me to continue to support us when I had to be there to care for him full-time.
I was a single mother with three beautiful children. I worked full-time, and went to college full-time.
When Michael was diagnosed, my children were 4, 3 and 2 years old. Michael was the 2-year-old. He had stopped sleeping though
the night quite some time before he was diagnosed. He would take a 20 minute nap during the day and at night, he only slept between
3 and 5 hours. Having the two older children, I knew there was something unusual about this.
I had talked to his doctor about it a number of times. At first, she said that it sounded like he had ADHD, but went on to tell me that he could not be tested for it until he was 5. Each time I would bring up the issue of him not sleeping, she gave me something new to try.
This went on for at least 9 months!
Unfortunately, I was young, and very naïve. I thought that doctors knew everything. That they could fix anything. I never even thought to question the advice she gave me. I truly believed that she knew what she was talking about.
Never in a million years did I think there was really something wrong with my 2-year-old son. Little did I know that his doctor was not a God. She had no clue what was going on with him and worse yet, she had taken no steps to find out.
On January 22, 2003 in a matter of hours my life changed forever. Michael went to bed on the 21st just like any other night. He had
been running through the house playing and laughing. When we woke on the 22nd, he was a little fussy. The entire ride to daycare,
he was having a temper tantrum - VERY unlike him. I chalked it up to the fussiness of the morning.
The daycare called for him to be picked up. He had vomitted several times already. I called the doctor and picked him up. The doctor suggested that I pick up some Pedialite because there was a virus going around, she didn't even want to see him! So I picked up the Pedialite, picked up Michael and we headed home. All of this was by 10 am.
At home, he became more and more lethargic. I tried to soothe him with a bath and he nearly fell asleep in the tub.
By 2:00, Michael still was showing no signs of coming around at all. I took him to the Newark Emergency room. I knew that something was not right, but I thought that he just had the flu since that was what his doctor had told me.
While the doctor at the emergency room was examining him, he had a seizure. Now, the Newark Emergency room is a satellite office and they were not equipped to care for him the instant that it became more than the flu. He was immediately transported to the Christiana hospital. I had no idea what was going on, I felt so lost and helpless.
By the time that I arrived at the hospital there were so many people around him, and they were already preparing to put him on a ventilator.
OMG! My heart stopped. All I could think was "what the hell is going on?"
They sent him for a CAT scan which showed that he had a tumor on his brain. My head was spinning I could not believe what the
doctors were telling me. They worked to stabilize him and get him ready to be moved again.
This time, he was transported to AI DuPont Hospital for Children where he received another CAT scan. After looking at the results,
the doctors reported that the tumor was located on the top of his brain, "the best possible spot for a tumor". They were confident that
they would be able to remove it easily. The CAT scan also showed that he had fluid on the brain. They inserted a drip tube in his
head to help release the pressure off his brain.
The next morning, which was now January 23, they did an MRI to get a better look at the tumor. He had not yet regained
consciousness.
The MRI showed that the tumor was not located on top of his brain. Instead it was located on his brain steam - "the worst possible
spot for a tumor".
The doctors were now 99% sure that the tumor was cancerous. He was scheduled for surgery the next day. He underwent 15 ½ hours
of surgery.
Because of the location of the tumor the surgeons were only able to remove about 40% of the tumor. He was still in critical condition
after the surgery. The doctors told us that if he was to survive the surgery, he would only have 6 months. We lived at the hospital until Michael woke up several days later.
Once he woke up, I started taking the girls home at night to sleep in their own beds while my mother stayed at the hospital.
By February 11 he had recovered and was strong enough to come home. He came home with 10 different medications. One of
these was a shot that he had to get every night. At only 2 1/2-years-old, my thriving child had changed, literally overnight.
I had to quit my job and quit school. There was no way for me to continue to support us when I had to be there to care for him full-time.