Michelle and David were willing to do whatever it took to give their son, Kyle, a future – including driving him two and a half hours away to receive proton radiation therapy, in hopes of shrinking his cancerous brain tumor. However, they could not have done it without your help.
“Thank you for taking the weight off our shoulders. It’s so hard for families like us. Your donations make our lives easier. We don’t ever know if your donors know how important they are, and they need to,” said Michelle.
As if cancer wasn’t enough for Kyle, he was diagnosed with autism at age two. His form of autism has caused him to be a little clumsy, so the tumor may have taken a little longer to show itself. One day, the school therapist called Michelle to let her know Kyle “seems overly clumsy today.” She made an appointment with his doctor for the next day. However, before they could get to the appointment, Kyle was limping and walking slumped over.
“It looked like he had a stroke. His mouth was all droopy, too. So we rushed him to the ER and he was admitted to the PICU and sent down for an MRI. It all happened so fast. All of this, and a biopsy, happened within 24 hours,” Michelle explained.
According to Michelle, Kyle is a realist, but very mature for his 12 years. He was included in every medical discussion and nothing was kept from him. When it came time for the prognosis, it took a couple of hours for it to sink in, and then he cried for a long time. With his rare form of cancer, Kyle has only a 30% chance to live past five years.
“Kyle has an amazingly positive attitude. All the nurses, techs, everyone has fallen in love with him. He wants to be in the 30% and tells everyone he is going to be ok,” shared Michelle, fighting back tears.
Because his tumor is so close to his brain stem and spine, proton therapy was determined to be his best chance at shrinking it, in hopes of performing surgery to remove more of it.
After the first two weeks of his proton therapy treatment, Kyle was showing outward signs of improvement. His mouth was no longer droopy and he was walking better. Now that his month-long treatment is finished, Kyle no longer needs a wheelchair, unless he is feeling unsteady. He has 85% of the use of his arm and hand back. Next month they will find out if surgery is an option.
Kyle received his proton therapy treatment at Robert’s Proton Therapy Center in Philadelphia, over 125 miles from home. Due to the distance, Kyle and his mom had to move to a hotel. David needed to continue working, but he faithfully made the long drive every weekend to be with his son.
“David had to continue working, because the first month after the diagnosis killed us financially. He had taken all that time off while they figured out what they were going to do,” explained Michelle. After looking into different housing options, they were introduced to Compass to Care. With your help, and the help of a grant from IBA, we were able to eliminate all hotel expenses.
“Compass to Care’s help was crucial. We appreciate it more than you will ever know. And IBA needs to know how amazing they are, too! We couldn’t have afforded that hotel – or any hotel. I can’t thank you all enough!” Michelle said.