Tim is in the US Air Force and we were stationed near RAF Lakenheath in England. We had been there since February 2008. Before that we were in Germany for five years, where Aiden and his younger brother Noah were born.
We first came to suspect a problem on July 19, when Aiden didn't want to go to school because he was tired. I said he could stay home but had to rest; no tv or video games. He decided to go to school but asked me to write a note to his teacher that he may need to go home later. I was ironing when I got the call from the school, around 10am. I was asked to pick him up and told that a teacher's assistant wanted to speak to me.
When I arrived, Aiden was sitting in a chair waiting for me and Mrs Cox pulled me aside and told me her concerns. He seemed to be weak on one side of his body. He'd had trouble running in PE.
It's strange the way small things happen without a notice. Had you asked me an hour earlier, I'd have said he was perfectly normal. Yet as we left the school I saw his left arm turned outward and held against his body awkwardly. His left leg was stiff. The crooked smile I'd only recently noticed and attributed to a hereditary trait from my grandpa was suddenly suspect. He said his fingers had been turning in for a week but he hadn't mentioned it. On the way to the hospital we stopped at the commissary for drinks and he fell over as we walked out the door.
Aiden started radiation treatment (radiotherapy it's called in England) on August 1st. This lasted 6 weeks. Thankfully, he didn't need to be sedated as I've read younger children need to be. He was so brave.
Before the treatment even began, Aiden's eyes began to turn in and he had double vision. He started taking steroids to counteract the swelling caused by the radiation, and Zantac to counteract the affects of the steroids on his tummy. Despite the steroids, by the second week of August his condition had deteriorated considerably. He couldn't walk without a great deal of assistance, he couldn't chew or swallow well, the muscle weakness even effected his speech- he couldn't form words and had to slowly point to letters on a chart or type on an iPad to communicate (which is difficult with double vision). He began to sleep all the time, even after taking a bite but before swallowing. After examining him, his pediatric oncologist called me into a room to privately say she thought the radiotherapy wasn't working and that the tumor was "one step ahead of us". Her recommendation was to discontinue therapy and let him spend his last days at home. She recommended a MRI to confirm her "gut feeling".
On August 18 the second MRI was done. It showed that the tumor was "bulkier" but was liquifying, or dying. We gratefully agreed to continue the radiation and increase the steroids. Within a few days his symptoms improved.
The daily trips to Cambridge from our house in Thetford were grueling. It was about 45 minutes one-way to the hospital, so just travel took an hour-and-a-half. At best, we got directly in for the treatment, which literally took about 5 minutes total. On tougher days, the MRI machine was down and we had to go down the hall to a different one and wait with a crowd for our turn. Often we had visits with doctors, and therapists. We'd get home and be so exhausted. On top of this, steroids made Aiden grumpy and ravenously hungry. Many times I woke up in the middle of the night to make him a ham and cheese omelet with sliced strawberries! The whole routine was exhausting. We were blessed beyond words to have not only my mom stay for a couple weeks, but also our amazing, beautiful church family bring us meals every week day. They cleaned our house once a week as well, took us to appointments if needed, encouraged us, prayed for us, called us. They were angels and I don't know how we could have made it without them.
By the time the therapy was complete and we'd weaned him off the steroids, he was at the best level he'd been at since about a week after diagnosis. He slowly regained his strength, his eyes uncrossed and his speech improved so he didn't need to use an alphabet or an iPad. At this point his stubbornness and strong determination paid off. While at the worst he's been unable to roll over in bed or get to a sitting position, he began doing crunches (sometimes over a hundred a night!) so he could do these things without relying on his still-weak arm. He began lifting a 3 pound weight with his right arm, and doing many strength exercises prescribed by the psychical therapist.
The month of October was joyous for me. Tim went back to work after being off for radiation. An amazing neighbor took Noah to school every day and picked him up. Aiden and I watched movies, did school worksheets, did science experiments, and laughed so hard every day. He is so witty and funny. I love being around him and that month was the first time I've been able to spend so much time with him one-on-one. It will always stand out in my mind as a peaceful time in which I was so grateful for every moment.
We wanted to stay in England, but eventually were told that because of the prognosis we must go back to The States. As our flight date approached, Aiden's symptoms began to worsen. His eyes re-crossed. He started to have signs of hydrocephalus (headache, nausea, vomiting). By the time we flew out and landed at SeaTac in Washington State, the symptoms were worse and he could no longer walk. He was seen at Seattle Children's Hospital and a MRI showed the tumor had grown and begun to spread, and there was a build-up of fluid in his brain. He began taking steroids again, as well as Zantac. The headache and vomiting stopped immediately, and one eye uncrossed fairly quickly as well. He could walk again, supported by one of us. Despite being told his eyes would likely stay crossed, the second eye straightened out suddenly after a few weeks on steroids. We have been able to get his daily dose down to .5 mg twice a day.
I will write more later. This is the summary of our time from diagnosis to our move to America. I'll write more later and try to keep updated from here on out.
