^^Angel^^ Jonathan C. - Quilt Finished in 2001

Bon: August 9, 1993 - Passed Away: October 21, 2001

Illness: Intrensic Pontine Glioma Brain Tumor

Special quilt made with extra squares from John's quilt per John's mom request.  Jonathan received his quilt 17 days before he passed away.

A Special Thank You From Jonathan's Family!

Jonathan received the quilt and it is quite beautiful.

Thank you,  Cathy (Jonathan's Mom)

Jonathan's Story

written by mom Cathy

Before Jonathan’s illness he had an unquenchable source of energy, we used to call him our energizer bunny. Jonathan is a loving little boy who is generous and thoughtful.

On November 29th, 2000, tragedy hit our family when we learned that our 7 year old son, Jonathan, was diagnosed with a brain tumor. Earlier that week, several other members of our family had come down with the flu. When Jonathan got sick the evening of the 25th we assumed he had the flu since he exhibited all the same symptoms. However, two days later, Jonathan’s condition worsened as we noticed he had an uneven gait to his walk and a couple of times he would stumble and fall. By November 29th he could no longer keep fluids down as he became severely dehydrated and lethargic. While attempting to walk toward us with a greeting, we noticed that he was limping and that half of his face was drooping while the other was still smiling. Later that day while waiting to be seen by his doctor he could no longer hold his head up.

Our doctor was concerned about the symptoms Jonathan presented and wanted to consult with other doctors. Arrangements were made and sent by a first aid car to Mary Bridge Hospital in Tacoma, Washington. Jonathan thought it was very cool because his friend got to ride in one too when he broke his arm. Smiling down at my son fear took hold of me as intuitively I knew something was wrong and I couldn’t shake the feeling. As Jonathan’s condition deteriorated he was hooked up to an IV for dehydration and scheduled for a CAT Scan. The initial CAT Scan revealed some type of a brain mass. A subsequent MRI Scan would confirm that he had an Intrinsic Pontine Glioma. Because his tumor was located in the pontine region of his brain it was considered inoperable. The pontine region of the brain is the main "command center" for all bodily functions.

When we were first given Jonathan’s diagnosis we were stunned. I remember an initial feeling of fear and then pain as the tears started down my face. The next thing I heard was my husband breaking down crying as his heart was breaking. Because not only was Jonathan’s tumor inoperable, but it was also terminal. He was only given a year to eighteen months to live with radiation therapy. Without it, he would die even sooner. We could not believe this was happening to us. At first we thought that all the times he had fallen and bumped his head resulted in the brain tumor. We were assured that no amount of hard knocks would have caused it. Although he also might have had it when he was born and then it might have started to grow in the last year or so… no one knows. The wait was unbearable. Then everything was confirmed our son did indeed have a tumor. Our world was turned upside down. The next few days had become a blur we found it hard to focus on anything else, but to make our son as comfortable as possible.

Through recommendations we asked to be transferred to Children’s Hospital in Seattle, Washington, where a specialist by the name of Dr. J. Russell Geyer continued to care for Jonathan. His Decadron was continued to bring down the swelling of the tumor. Although we were forewarned that he would experience personality changes we didn’t really understand until it started happening. Jonathan became very irritable and demanding. Further, the steroids drastically increased his appetite. He never seemed to get enough food. As mentioned earlier, the pontine region of the brain is the "command center" for all bodily functions. As a result, Jonathan lost his equilibrium. Dizzy spells caused him to fall repeatedly. He continued to have visual disturbances including seeing double and blurred vision. The pressure induced by the swollen mass affected Jonathan’s ability to eat. He could no longer swallow normal food. He was put on a liquid diet. All our emotional and physical energy seemed to focus on trying to cope with Jonathan’s erratic outbursts and in keeping him from injuring himself as he fought to get out of his hospital bed and be normal. He couldn’t understand what was happening to him. He didn’t know he was dying.

Another MRI Scan to make sure that the tumor did not spread to his spine. Thankfully the scan was okay. The first thing the doctor suggested was to continue the meds to stabilize him and to make sure he was no longer dehydrated. Next suggestion was to be 33 radiation treatments with chemotherapy. First a port-a-cath was to be put in place, then a mask was made to hold him still while he received his treatments. He thought that was pretty cool, because the mask looks like Wolverine. After a week stay we were able to go home and Jonathan was already packed the last 4 days just in case the doctor said he could go home. All the while, on the way home we stopped into Costco Wholesale to order his medication. During Jonathan’s radiation therapy the days were long. Each day was a 9-11 hour day including a 110 mile drive roundtrip to and from Children’s Hospital and the University of Washington. We tried to look at every day as an adventure for us, the long drive, weekly blood work before he receives the injection of chemo at Children’s, then a ride over to University of Washington for the radiation treatments. Some days, he would wake up dizzy with headaches and nausea culminating in vomiting spells. He did lose a little hair around the ears and he did get a little sunburn as a result of the radiation therapy. Everyday was wrought with stress and the concern that he would contact a virus or bacterial infection while his immune system was compromised due to his medical treatments. Many nights were sleepless and on the nights we did fall asleep we would wake up every few hours just to check on him.

On October 18th, 2001, Jonathan had his MRI Scan. The brain tumor had shown it was increasing in size rapidly. There was fluid in the brain that caused the ventricles to be shrunk. On October 19th, at 1:30am, we were recommended to go to the E.R. immediately for an emergency surgery to relieve the pressure by putting a shunt in his head. Then a tube was inserted through there and under the skin to the stomach so the brain fluids would be reabsorbed into the body.

Jonathan went through surgery okay and on the first opportunity, Glen and I rushed to his side calling his name seeing for ourselves that he was doing ok and he was. The shunt was working and draining the extra fluids in the brain well. Periodically he would wake here and there shouting that he had to urinate. By 8:15am the same day, he started having seizures and for several hours they were hard to control. By 9am he was in a coma and never came out of it. On October 21st, 2001, at 1:30am Jonathan passed away peacefully.