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Erik's Journey 
ERIK WILL BE 18 YEARS OLD SUNDAY JUNE 7TH
MY HERO-MY SON-MY FRIEND
Donation to Pediatric Brain Tumor consortium at CHOP
Left to right
Stephanie Strolbeck mom to precious angel Wylie and volunteer at PBTC
Dr. Phillips and Dr. Fisher
Erik Jr. Susie Gherardi me, Erik Sr.
and Stephanie Hope mom to precious angel Nicholas.
November 17th***16 years ago today Erik was diagnosised with medulloblastoma
He is our true inspiration
If you stop by please sign the guest book so Erik can see you visited!
THE STRANGEST, MOST GENEROUS, AND PROUDEST OF ALL VIRTUES IS TRUE COURAGE.
Michel Eyquem De Montaigne 1533-1592
***Erik’s quote for 2006 Graduation Year
Book***
Childhood Cancer Facts
# Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
# One in every 330 children will develop cancer before the age of 19.
# The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
# Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
# One out of every five children diagnosed with cancer dies.
# Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.
# Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.
# Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
# Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
# Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
# The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
# Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS yet pediatric AIDS receives four times the funding that childhood cancer receives.
# On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
# On the average, one in every four elementary schools has a child with cancer.
# On the average, every high school in America has two students who are a current or former cancer patient.
# In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.
# While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
# Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is illusive.
# Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
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
Monday, June 29, 2009 1:41 PM CDT Last week there was a huge childhood cancer awareness raley in Washington DC that was sponsored by Cure Search.
We were going but had to cancel at the last minute was it was real expensive to park and the hotel and food. Next year I will be there with a few of my friends that share my need to promote awareness to childhood cancer.
I was to speak to a member of congress and I would like to post some of my thoughts that I had for that day.
Thanks for listening
Childhood cancer has been a huge part of my life for the past sixteen years. When my son was dx’ed with medulloblastoma at the age of 17 months old our lives began to spin out of control. I can remember standing at my sons crib just watching bags of chemotherapy drugs dropping in to his chest through his brovac. Watching him being filled with poison with the hope that it would save his life! That lasted 14 months with many blood and platelets transfusions just to keep him alive through all of his treatment.
Then just prior to his 3rd birthday he received six weeks of radiation to his brain & spine to finish his treatment. This, we were told is what saved our sons life. Erik just turned 18 a few weeks ago. To my husband and me, it is by the grace of God and many skilled doctors that he was cured. Still today, 16 years later I witness many babies still dying from the same type of cancer Erik had. I am always asking myself WHY! Why was my son saved and yet so many are still dying. I can never do enough in this life to give back what I have received. Not ever.
Yet, there is another side to all of these many blessings. There is the side that is now my son’s life. I try to tell him how blessed he is and how fortunate he is and it is so very hard for him to understand how he is lucky when he is not the person he would have been if not for cancer. The treatment that saves a life has done so much damage. How do I tell him how lucky he is when he sees the differences between himself and other his age? The differences in height, and his own permanent hair loss. How is he lucky when he has no real friends to hang out with? No one picks on him but there is much pain in being over looked and ignored because you are difference. To have spent three years now in High School and has still not found a friend or a girl to talk to. How do I make him understand how lucky he is when he has to work twice as hard in everything he does and yet he still cannot keep up. I am constantly searching for the right words to help him to understand. The last heart break he has had is in finding out he will not get his driver’s license. He took the written test and did very well. He was to go for the driving part in July. I did some searching and found a rehabilitation center that evaluates people with disabilities for a driver’s license. They evaluated Erik and they recommended that he not get his license. This is probably the biggest heart break he has had in quite a while. We are renewing his permit and we will keep practicing and I do believe in miracles. His problem is his reaction time to things. It’s not there.
So you can see why he finds it hard to believe how lucky he is.
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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