NOTE FROM THE MACS STAFF

Jonathan's story has NOT been updated yet since he passed away on October 31st, 2005. We will update the end of his story as soon as we receive more information from his family.

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Jonathan's Story
written by mom Kathrine

Jonathan has always been meant for big things. At birth he was 9 lbs. 5 oz. he was very healthy and rarely got sick and even though he is 3 years younger then his brother DJ, by age 7 he was as tall as him, by age 8 he was 5'2 and wears men's shoe size 10.5. Jon has always been a humble child, he rarely asked for more and truly enjoys the things he has. He idolizes his big brother but enjoys being independent and a leader. With the boys now being about the same height, many people ask if they are twins.

The summer of 2004, May in fact, he was showing sings of a sinus infection. With being absent from school for nearly 3 weeks, he'd sleep all day almost 18 hours, and his appetite became nonexistent, antibiotics weren't working either. So we ended up taking him to an ear, nose, and throat doctor after having a visit to the Emergency room for a severe headache, and it was there that my husband demanded an MRI, even though at the time his diagnosis was a simple sinus infection.

The results just showed a mass in the sinus and we were asked to see a specialist. While visiting with the ear, nose, and throat doctor he began bleeding severely and had to be rushed to the hospital. There was a biopsy done and his nose was packed with 6 feet of gauze to stop the bleeding. What would feel like the worse day of our lives, on May 20th 2004, he was diagnosed with Ewing's Sarcoma of the left nasal cavity. The reaction to those words (cancer) can haunt you, and to see the fear in your child's face is almost more then a parent can bare.

During that time the tumor was about the size of a large lemon and began to push up to the brain, behind the left eye and behind the nose towards the right side. Jon had undergone 11 rounds of intense chemo, when we discovered that the tumor began to grow again it was then that surgery was given. Jon's chemo demanded us to go to the clinic every day for up to 8 hours a day and for 5 days a week back to back. With a 3-5 hospital visit 10 days afterwards, then it was back to the clinic again for more chemo. During that time Jon had lost so much weight and almost gave up his fight. A feeding tube was placed into his stomach where he was fed with liquid meal supplements. But Jon always had a great support team and he quickly began to fight and fight even harder.. Luckily enough, the tumor had shrunk enough that the doctors were able to go through the nose microscopically, and the tumor was now the size of a nickel. They originally had plans on going through the top of the head cutting him ear to ear.

Once removed, he began 5 weeks of radiation every day. That entailed him to have a special face mask to ensure the beams were given precisely while he laid on a table snapped into place. The procedure took about 15 minutes, the drive there was longer.. Both parents were blessed enough to be with him every day. My husband had a very understanding Job and I had quit my parttime job to care for Jon exclusively. But we also had family members visit all the time as well great friends. We immediately became close with the clinic CHOA- "Childhood Hematology Oncology Associates" in Denver, Colorado. Our clinic and surrounding physicians were about 45 minutes from home. But all his treatments were outpatient which gave Jon the opportunity to continue to live at home and see his familiar surroundings.

On April 12th, 2005, our son made it through chemo, radiation and surgery. Almost a year of fight, fight, fight and constant fight and faith. We report that his EKG, Chest CT, bone scan, and MRI of the head showed no signs of disease or damage. In addition the MRI's have been compared and there is no sign of bone growth issues. Remember we were told the radiation could stop or delay bone growth to the left side of his face giving him later deformities. We will continue to monitor his results every 2 months for the first year and less often there and do regular checkup's 1-2 times a month. We do still have a few things to tie up, like removal of his IV line; no surgery date has been set yet. He will continue his bone growing agent for about 2-3 more months as well as the immune system blood enhancement given by IV.

While on his treatments he had a home tutor given and she came 1 hour per day. He was scheduled to return to public school the first of May, but once Jon got the clear bill of health he couldn't wait any longer. So he went back to school on April 18th. He had the option to continue with his tutor till June 5th or so. But this just shows how strong he is, and continues to push. It will feel like our child leaves you during the first day of kindergarten, but I know he will be fine and needs to catch up from the life he missed for almost a year.

This family has endured so much, but during all this we found God. We learned to handle each hurdle and do it together. At one time it was important to work, work, work. And then your priorities change when you are faced with a life threatening disease. I don't think we'd change a thing if it meant Jon could still have a full life. Our life experiences have made us all better people. Jon especially, he values life, loves everyone, and can smile just from a sunny day.