Ryan's Story


Kimberly Kennedy Karp, Ryan's mother, tells this account of Ryan's journey.

"Ryan was diagnosed with a Tumor on March 29th, 2007. We had an emergency surgery scheduled for March 30, 2007 that removed a golf ball size tumor from his brain stem. The determined it was a malignant tumor called ependymoma Grade 2. Ryan underwent additional testing to ensure tumors had not spread to his spine. In June of 2007 Ryan began a 6 week Chemo protocol. In August 2007 we put together a Radiation plan and started and finished Radiation in October 2007. A follow up MRI determined that there was another tumor and in November and we sought additional opinions and treatment from Chicago children’s hospital and U of M Children’s MOTT. Chicago could not do the surgery that we thought they could because he had already received too much radiation. All other opinions would go the same route, which was surgery, and so we ended up back at Children’s in Detroit for another Tumor resection on January 16, 2008. When they performed the surgery they found 3 additional tumors and removed those as well. We chose at this point to let him take a break from treatments and to enjoy himself. We continued with regular 3 month MRI's and in April of 2009 it was determined that the tumor was back again. We decided to enjoy life a little longer and get him through his birthday on 26th, so May 27th, Ryan had a 3rd resection and underwent Radiation treatment at U of M Mott Children’s hospital. He also started a drug protocol once Radiation was completed. Ryan started the protocol in November and then, due to adverse reactions, we chose to take him off the treatment in Mid April 2010.

"Ryan was complaining of pain and we worked with the doctor asking if we could get MRI scan done earlier than was scheduled due to Ryan not feeling well and continued reports of pain. In June his scans were completed and we were informed that he had another tumor. On August 30th, 2010 Ryan had this 4th surgery to remove the tumor. We decided to hold off through the summer so he could go to Florida with his Brother and Sister to visit Grandma and grandpa as this disease had overtaken his life.

"We found out on Nov 15th that there was indeed a tumor growing on his brain stem and we had that removed on Nov 19th. We began looking for a new protocol to put Ryan on, which we did.

"However the protocol wasn't working and had additional surgeries on July 27th, 2011 to remove a tumor from his Auditory Canal and he suffered moderate to severe hearing loss. He also had another tumor removed from his brain stem on August 19th, 2011. His Grade of cancer has now changed to Ependymoma Grade 3.

"We scheduled for Scans on Nov 20th and the results from MRI appointment indicated 2 tumors located on the brainstem and 1 in the internal auditory canal. Our doctor stated he could do surgery, but Ryan did not want anymore surgery. So we sought treatment at CERN hospital in Chicago beginning on Dec 14, 2011 on the Clinical trial study for PTC299.

"Feb 8th, 2012 treatment ended as tumors had doubled in size. Ryan decided that this was enough and he wanted to LIVE like he had before Brain cancer and opted for no more treatments. We as his parents agreed with this and constantly asked him if he was sure that this is what he wanted. We asked weekly until we knew he would be inoperable. Doctors have told us that we would most likely be back having surgeries again 3 months after the tumors were removed and it would have been 3 separate surgeries. He would most likely lose the quality of life that he was accustomed to as well. So on Feb 20th, 2012 we left for an all inclusive family vacation for a week.

"On March 13th, 2012 we began hospice care and worked hard to keep Ryan comfortable and enjoying his life.

"On May 26th, 2012 my sweet Ryan earned his angel wings and went to be with Jesus."

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