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READ MOREPublished on March 25, 2016 in Share Your Story
Jeremy Adam Kohlberg, is your classmate, your student, your friend and your total stranger. But he wants to share his story with everyone to create awareness and to invite everyone to his annual fundraising event for Pediatric Cancer Research. We need you!
You can make a difference.
Please Share Jeremy’s Story
If You know Jeremy, our son. Then you know the battle he is facing. I have many new friends on FB and from time to time when I post something about our family, I get messages asking what is going on. So I thought it might be time to tell Jeremy’s story again.
Jeremy is our 12 year old son. He and his two biological siblings; Charlie and Gabe were adopted by John and I in 2008. All three boys have significant needs. Life has not been easy for them. Unfortunately for Jeremy, he is battling to extend his life.
Jeremy has Brain Cancer. The type of cancer is Ependymoma, and more specifically in Jeremy’s case; Recurrent Metastatic Ependymoma. For which there is no cure.
In 2012 when Jeremy was 9 years old he was brought in to the emergency room for lethargy and vomiting. A few hours later we were given life altering news. Jeremy had a mass on the brain that was about the size of a plum and wrapped around his brain stem. Two days later on Christmas Eve he had a 9 hour brain surgery to remove this malignant tumor. Jeremy was diagnosed with a rare form of cancer, called ependymoma.
His 2nd surgery was in January 2013 followed by 2 months of daily radiation.
Jeremy came through with flying colors, and he was tumor and cancer free for a little over a year.
In July of 2014, at a routine scan a lesion was discovered and he underwent a very risky third brain surgery. Much to our delight they thought it was nothing but a cyst. However in late October that lesion more than doubled in size and Jeremy underwent his fourth and fifth brain surgeries.
This time the tumor had moved to a new location in the brain and was considered to be metastatic. There is No Cure for ependymoma and though progress is being made they still know very little about it. It does occur in both adult and pediatric patients and only in the Central Nervous system. There is quite a bit of research being done, and they learn more each and every day. Many treatments however, have proved not to be effective.
Unfortunately Jeremy’s recurrence of his tumors was not good news and Jeremy’s prognosis was fair at best.
His mortality rate was roughly 20%. In our doctors words, “this may be the beginning of the end.”
As you can imagine this was heartbreaking and devastating, yet inspiring. Our superhero is no statistic. And he has continued to fight.
We are in the fight of our lives, and Jeremy is in a fight to save his life.
Though he battles with headaches, aches and pains and the frustrations of some damage to key areas of the brain, he carries on with his bright beautiful smile. He really is a Rock Star and without a doubt our Bright Shining Star.
It was five surgeries and two rounds of radiation in less than three years.
At his post radiation scan a new spot in a new location was found, but is was very tiny and everyone thought we should just watch it for now.
At that time Jeremy’s headaches were daily and were waking him in the evening. He was having pain in his pelvis and back, plus some other symptoms as well. This seemed more like side effects from radiation, and not tumor related, so we decided to wait. But he continued to have symptoms that were concerning.
He was not scheduled for MRI until May, his medical team felt he should come in two months early.
So on Tuesday March 24, 2015 we are back at it. The MRI, discovered the tumor was continuing to grow. We inquired about a clinical trial in Chicago, And together with our medical team it was decided we would give it try.
Before we left for Chicago, Jeremy was given his dream come true by a wonderful charitable organization and plans were in the works for the ultimate family vacation to Disney World, Universal and Sea World. In May of 2015 we headed to Florida. It was an amazing adventure.
In July Jeremy, his two brothers and myself went to Chicago for a clinical trial.
Unfortunately due to no housing, expenses and Jeremy’s reaction we were not able to continue and Jeremy was disqualified. It was frustrating, but we were happy to come home to Minnesota and reunite with dad, and pets.
Jeremy went in to surgery almost immediately, and had surgery number six.
We should mention that Jeremy is treated at University of Minnesota, Masonic Children’s Hospital. An awesome group of doctors, and nurses.
They have treated our entire family with dignity and respect and made this journey easier to deal with.
After, now, six successful surgeries, we decided to try chemotherapy. Luckily we were able to do an oral form at home.
We new that the best we could ever hope for at this point was stable. But stable was great.
Jeremy did almost 7 weeks of chemo before the school year began. Things seemed to be going well, he would get extremely tired and wear out quickly, but in his typical Rock Star like fashion, he continued to fight the fight.
We had started to notice that he was slowing down. He had lot of confusion and memory struggles.
The first day of school, September 2015, was very exciting for Jeremy. He was ready to start Middle School, and he was excited to take the bus to school for the first time. As a bonus it was his big brothers birthday. The day was going to be great! But something was off. He was confused and quiet that morning. I asked him if he wanted to stay home and he said no. I worried as we sent him off to the bus stop.
That evening he was moving and talking slowly. By the end of the night he could not walk a straight line and was slurring his words. We were concerned but also felt as if this could be a medication issue. He went to bed and I put a call into his doctor.
On the morning of September 9, 2015 he seemed better. We sent him to school, as we were in communication with the doctor. He thought better safe than sorry and asked us to bring him in. By the time we got him there he was lethargic and quiet.
After the MRI, it was discovered he had Hydrocephalus. He went in for emergency surgery to drain fluid and look for a blockage. Surgeries numbers seven and eight. They ended up putting in a drain so they could try to find the blockage. They did find one but it was too dangerous to remove. So 24 hours later, he had a permanent shunt placed.
Jeremy was back in school the following week, where he ran and finished his very first Cross Country Track Meet. Have I said amazing?
He re-started his chemo but it was discovered he was having some tremors, so we had to reduce the dose. When he went in for his routine MRI about 7 weeks later another small spot that we had been watching had grown. On Dec 17, 2015 Jeremy Kohlberg had surgery number nine.
His prognosis was poor, and his oncologist gave him six months. That was almost two months a go.
This is Jeremy’s story, but I can’t explain the ache in our hearts. This kid’ strength and his resilience has been an inspiration to many.
Jeremy knows that his cancer may shorten his life. But he continues to fight and brave his way through it all.
He is active in school, and is the Equipment Manager for our youngest son’s hockey team. While he was in his most recent surgery, the team dedicated a game to him, and cheered his name. The team along with many others, made sure our family had a great Christmas.
We pray everyday it is not his last.
We had made a tough decision, which was to do full brain and spine radiation. This will most likely cause more deficits, and has serious side effects both short and long term. But in the words of our son. We Never Give Up!!!
Today Jeremy is still in school, playing guitar in choir. He has had 7 treatments and 19 more to go. Stay Strong!!!
Cherish the ones you love, Peace,
The Kohlberg Family
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.