Soon2B4
DIS Veteran
- Joined
- Feb 13, 2009
Well, after having our trip dates since June I guess its time I finally start my Pre-trip report. 
I will do my best since I have never been a fan of writing!
Our family consists of the following:
Aidan 3 Our wish child. At age 5 months, he was diagnosed with stage 4 neuroblastoma. He loves everything Disney and will ask you to watch the trip planning every chance he gets. Like most boys, he is into cars, dinosaurs, and trains. Aidan can tell you the names of more dinosaurs than anyone I know. He is an extremely bright child and to look at him you probably wouldnt know he was ever sick.
Ian 5 months Our extremely happy baby. Aidan calls him his baby, but says he cant take care of him b/c he is to small.
Kevin Dad. My wonderful husband that help me keep my sanity through many sleepless hospital nights.
Stephanie Mom (Me)
It all started back in November 2006 when Aidan was only 4 months old. He seemed like a normal baby, but he had breathing issues. When he would really get kicking, he would get short of breath. I questioned the doctor at his 4 month check up and he told me it was more than likely asthma. He prescribed breathing treatments any time he got short of breath. Being a first time mom, I went along with it and did exactly as he told me to. It seemed to help, but the problem was still there.
Fast forward to January 20, 2007, the day our world fell apart. We were at my parents house for my dads birthday. I took him and laid him down for a nap. He woke up and started screaming and the next thing I new, he stopped breathing. I went running to my mom who was certified in CPR and she started rescue breaths. Aidan finally started to get color back and trying to move his arms. When taken to the hospital, they took x-rays and told us he had aspirated.
We were transferred to another hospital in the area that had an affiliation with Akron Childrens hospital. We were kept over night and the next morning they repeated the chest x-ray and said his lung was clearing up and we were sent home. When we got home the doctors called and told us that the films were read by the childrens hospital and they felt there was something more there. We had to take him for a CT. No sooner did we get home from the CT the doctors were calling telling us to get the Akron Childrens as soon as possible, they were waiting for us.
When we got the hospital it was a whirl wind. The next day, he had a biopsy done on what they were calling a solid mass, a port placed, and an MRI. Our worst fears were confirmed, he had cancer. It was approximately 4-5 inches in his right lung cavity and was spreading into his spinal column. The day following the surgery, they started him on his first round of chemo. We spent approximately 2 weeks in the hospital.
Aidan had 4 rounds of inpatient chemo, consisting of 3-4 day stays every 3-4 weeks. They expected he would have to have 8, but much to there surprise he responded extremely well and the tumor had shrunk to approximately 1 inch. His surgeon was able to go in a remove what was left. It did leave him with Horners Syndrome. Basically, his right pupil is smaller than the left and he only sweats on the left side.
Since his last surgery, Aidan has had countless scans. He went 2 days in a row, was sedated and had a CT, MRI, and MIBG. (Nuclear Medicine scan).
I am EXTREMELY happy to report that he had scans in October that came back clear and he no longer has to have them.
They still are waiting on his urine test, (neuroblastoma elevates certain levels in urine) but he is doing GREAT!!! He will still see his oncologist and have the urine tests and blood work done, but we are so relieved he no longer has to go for scans.
When we applied for MAW, I was apprehensive like most families, thinking there were more deserving children. He was doing well and was living a pretty normal life. I was reminded everything we had been through that most families never have to experience.
We never had a doubt what he would wish for. The child LOVES Disney! He told our volunteers that he wanted to go to Animal Kingdom. We are going November 29-December 5 and are staying at GKTW.
I ended up being a little more long winded than I had planned, but that is it for now. I will post pictures once I figure out how!
I will do my best since I have never been a fan of writing! Our family consists of the following:
Aidan 3 Our wish child. At age 5 months, he was diagnosed with stage 4 neuroblastoma. He loves everything Disney and will ask you to watch the trip planning every chance he gets. Like most boys, he is into cars, dinosaurs, and trains. Aidan can tell you the names of more dinosaurs than anyone I know. He is an extremely bright child and to look at him you probably wouldnt know he was ever sick.
Ian 5 months Our extremely happy baby. Aidan calls him his baby, but says he cant take care of him b/c he is to small.
Kevin Dad. My wonderful husband that help me keep my sanity through many sleepless hospital nights.
Stephanie Mom (Me)
It all started back in November 2006 when Aidan was only 4 months old. He seemed like a normal baby, but he had breathing issues. When he would really get kicking, he would get short of breath. I questioned the doctor at his 4 month check up and he told me it was more than likely asthma. He prescribed breathing treatments any time he got short of breath. Being a first time mom, I went along with it and did exactly as he told me to. It seemed to help, but the problem was still there.
Fast forward to January 20, 2007, the day our world fell apart. We were at my parents house for my dads birthday. I took him and laid him down for a nap. He woke up and started screaming and the next thing I new, he stopped breathing. I went running to my mom who was certified in CPR and she started rescue breaths. Aidan finally started to get color back and trying to move his arms. When taken to the hospital, they took x-rays and told us he had aspirated.
We were transferred to another hospital in the area that had an affiliation with Akron Childrens hospital. We were kept over night and the next morning they repeated the chest x-ray and said his lung was clearing up and we were sent home. When we got home the doctors called and told us that the films were read by the childrens hospital and they felt there was something more there. We had to take him for a CT. No sooner did we get home from the CT the doctors were calling telling us to get the Akron Childrens as soon as possible, they were waiting for us.
When we got the hospital it was a whirl wind. The next day, he had a biopsy done on what they were calling a solid mass, a port placed, and an MRI. Our worst fears were confirmed, he had cancer. It was approximately 4-5 inches in his right lung cavity and was spreading into his spinal column. The day following the surgery, they started him on his first round of chemo. We spent approximately 2 weeks in the hospital.
Aidan had 4 rounds of inpatient chemo, consisting of 3-4 day stays every 3-4 weeks. They expected he would have to have 8, but much to there surprise he responded extremely well and the tumor had shrunk to approximately 1 inch. His surgeon was able to go in a remove what was left. It did leave him with Horners Syndrome. Basically, his right pupil is smaller than the left and he only sweats on the left side.
Since his last surgery, Aidan has had countless scans. He went 2 days in a row, was sedated and had a CT, MRI, and MIBG. (Nuclear Medicine scan).
I am EXTREMELY happy to report that he had scans in October that came back clear and he no longer has to have them.
They still are waiting on his urine test, (neuroblastoma elevates certain levels in urine) but he is doing GREAT!!! He will still see his oncologist and have the urine tests and blood work done, but we are so relieved he no longer has to go for scans. When we applied for MAW, I was apprehensive like most families, thinking there were more deserving children. He was doing well and was living a pretty normal life. I was reminded everything we had been through that most families never have to experience.
We never had a doubt what he would wish for. The child LOVES Disney! He told our volunteers that he wanted to go to Animal Kingdom. We are going November 29-December 5 and are staying at GKTW.
I ended up being a little more long winded than I had planned, but that is it for now. I will post pictures once I figure out how!
) We were supposed to be there Aug. 29
It's getting so close and I can't believe how fast time went by. 
When she was about 18 mos she really started to cause some trouble. At the park one day I mentioned to some other parents that she had hit the terrible twos early. The dad replied, whoever named it the Terrible Twos hadn't hit three yet. Boy, was he right!!! Three has been the hardest year so far. I have had trouble sleeping because my eyes and ears are always on the lookout for our little trouble maker. So I know exactly what you mean!!!
