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Erik's Journey 
Class of 2010
I can remember looking down in to the crib in his hospital bed the first time that he received Chemotherapy. Standing there and praying….”God please let my child life for his 2nd Birthday”
My son, my friend and my Hero.
Diagnosised November 17 1992
Finished treatment May 17th 1994
What is Medulloblastoma?
Medulloblastoma is cancer that appears in the brain and spine. Medulloblastoma accounts for about 20 percent of childhood brain tumors. They most often occur in the first decade of life; half occur in children younger than five to six years of age. These tumors are slightly more common in males than in females. When Erik was diagnosed at 17 months old we were told that they had a lot of success with this type of cancer with the older children. With infants the odds were not good.
Erik’s Journey
It was November 17, 1992 when we heard the words “Your baby has cancer” This was the beginning of Erik’s Journey. Erik had brain surgery to remove most of the tumor in his brain. We were told that this type of cancer was very treatable in older kids but the odds were against an infant surviving!
Erik started chemotherapy in December of 1992 and continued with this until February of 1994. It was then that he finished his treatment with radiation to the brain and spine. It is by the grace of God and many skilled doctors that he is here today.
We were told that radiation is the cure for many. Now Erik is cured of this dreaded disease but has many long term effects from his cure. Erik sees about 12 specialists at CHOP through out the year. His latest problem started about four years ago when he had a mini-stroke. It was discovered that the radiation he received 13 years ago was now showing up with the blood vessels in his brain. The right side was much worse and he needed surgery.
We took Erik to Dr. Scott in Boston who had designed a surgery to bring blood vessels from the face area up in to the brain to create more blood flow threw the brain. Erik will be gong through more testing in June to decide when he will need surgery on the left side.
We were told by Erik’s radiation oncologist back in 1997 that we had received a miracle and that any problems that would arise in Erik future, by then there would be surgery and procedures to correct these problems. So far he has been correct.
We as Erik’s parents are extremely proud of our son and his courage. We have vowed to do everything in our power to give him the most successful future possible no matter what the cost.
Thanks you so much for your support!
May 17th, 2007 11AM Celebrating 13 years out of treatment!
We as Erik’s parents know the fear of having a child that you could lose to this dreaded disease. We are blessed in his healing and we look constantly for any way of assisting Erik in his future. Erik is a happy 16 year old boy. Still striving and working very hard to keep up and accomplish what comes easy for others. This website is meant to keep others posted on his progress and possibly help maybe another family with similar issues. It is my pleasure to be this young man's mother and I thank God everyday for giving me this child to love.
Long term side effects are a luxury of being alive
I will never forget these very special angels.
Sawyer, Myles, Nicky, Dakota, Michael, Julian, Mathew,and Joshua
They are together dancing in heaven!
Below are a listing of Erik’s doctors and problems. This isn’t meant for any sympathy for him, just understanding. Research still helps Erik in his future.
MRI/MRA is every year
Long Term Follow up/Oncologist Yearly
Otolaryngology (ENT) Hearing tests yearly- Erik wears hearing aides in both ears.
Ophthalmology-Yearly-Has had cataracts removed from
both eyes.
Dermatology- Yearly-checking of moles in radiation site. In July of 2005 he had two moles removed.
Cardiology – yearly had base lines done. Radiation close to the heart can cause a lot of problems as a young adult.
Endocrinology- Every six months. Receives growth hormone injections daily – November 6, 2006 stopped taking growth hormone
Thyroid mediation. Radiation destroyed pituitary gland.
Gastroenterology- Acid reflux - Radiation to spine caused
Irritation to the esophagus every six months and is on Prevacid
Pulmonary-Yearly with pulmonary function testing. Last year 8-08 their was come concerns and additional testing was done. We are to watch for signs of excessive cold, breathing problems such as shortness of breath.
Orthopedic - yearly - Spine is fragile because of radiation.
Can also cause scoliosis.
Labs and bone age ex-ray yearly
Four years ago Erik had a Mini-stroke. (shrinkage of
Blood vessels on the right side of brain.) This disease is called Moya-moya This was caused by the radiation he received
The test for this is MRA. MRA in February of 2006 showed that the blood vessels on the right side of the brain have gotten a lot worse. On August 14th Erik had surgery at Boston Children’s Hospital by Dr. Michael Scoot. Dr. Scott took blood vessels from Erik’s face area and pulled them up in to the right side of the brain. Erik will be having an MRA on February 21st and that will tell a little bit about the progress of the blood vessels growing there and branching out. Erik will have another angiogram in August of 07 and that will tell the true story of how successful the surgery was.
Erik is receiving PT and OT and speech in school.
Erik stopped taking growth hormone on November 6th of 06. The 10 years that Erik was on growth hormone it worked wonderfully. The only area it doesn’t work (and we were told) is the spine. After being radiated the spine will grow but not as it should. The growth hormone does not help this. Standing he is getting taller and taller but setting down he appears to be very short. As long as he keeps his shirt on the out side, no one would ever notice. When setting down it is very obvious. His final height after the hormone is 5’2”
The head itself doesn’t grow as fast either. These are things that people probably would not notice unless it was pointed out. This is just one more of the effects of treatment.
Ride 4 Erik
Ride for HOPE
Support Pediatric Cancer Research
WWW.RIDE4ERIK.COM
Make a difference in the life of a child with cancer!
Ride 4 Erik will be an on going , year round fund raiser for pediatric cancer research. Any one wanting to make a donation or help with various fund raising please call me at 609-397-8892
Journal
Wednesday, September 29, 2010 10:09 AM CDT A long overdue update!
Erik recently had all of his yearly medical checkups and testing. The word is STABLE on all accounts. What we have been most concerned about was the blood vessel damage on the left side of his brain. He had surgery four years ago on the right side. The left side at the time showed some damage but not as bad. That has not gotten worse….thank God! Erik is out of school and we are looking for things to fill his days. He was done with school. All the English and history he had enough. He worked so hard in all his school years to be successful and now he has come to a halt. He works part time at Giant and he loves it. He needs more. We have sent resume’s to all of the doggie day car and kenneling places in the area but have not heard anything back yet. Other than one sweet lady that called and said she wished she did have an opening for him because she has heard of Erik and his journey and she would love to have him. Its strange how sometimes strangers can be more compassionate and understanding then people you are side by side with daily. We will be starting to make calls and maybe even go to project hire again. He needs to be busy! He has discovered a love for reading through comic books. I don’t care what he is reading as long as he is. Thank you Kevin for getting him involved in that. We truly appreciate all the time you spend with Erik.
Well I did go to LA in September and through St. Balkricks team 46 Mommas shaved their heads for pediatric cancer awareness. 46 Represents the number of children dx’ed every day in the US. All 46 Mommas have kids with cancer and many of these Mommas have lost their precious children to this dreaded disease. After our head shaving we all appeared on Stand up 2 Cancer on Friday night. It was a real nice experience and very empowering. There is nothing I wouldn’t do to help kids battling cancer.
Last Saturday was our yearly Caring 4 Kids with Cancer. A lot of hard work and still not very well attended yet we raised more money than last year. People care, I know that because the money came in. It’s just the wrong kind of event at that time of year. So we brain storm and come up with better ideas. I will NEVER give up. There are so many fantastic involved in helping and I sure feel very lucky to have the friends I do. VERY LUCKY!
I would like to ask for prayers for my daughter Jennifer. She broke her leg last week and had to have surgery last Friday to put in a rod and pins. She has been in a lot of pain. Her husband is taking very good care of her. Jen is a lucky girl finding a man like that. I’m pretty lucky myself and count my blessings everyday for all that I have.
We now approach October…the most beautiful time of year.
Enjoy
Norma
Read Journal History
Hospital Information: Patient Room: Home- 1217 Rt. 179, Lambertville, NJ 08530 Children's Hospital of Philadelphia
34th St and Civic Center Boulevard
Philadelphia, PA
215-590-1000
Links: www.ride4erik.com pediatric cancer fundraising
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