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Joshua & Doyle Brinkley Hutcheson
Blended Father and Son
Nov 24, 2016
What's the first thing you do when something tragic happen? Do you cry, laugh, silence, doubt, deny or feel nothing at all. I know us as a family have felt it all. I'm Trisha. The mother to Doyle and Caleigh and fiance to Josh. The kids and I moved to Lakewood, Ohio last year. Doyle was diagnosed with Autism in 2011, by The Autism Discovery Institute in 2011. He then was diagnosed with Epilepsy in March 2012. He has been in the hospital many times, for the years he lived in California. Moving to Ohio, he had a good plan coming in, medication controlled. He began having seizures a couple of months after living here. This year alone he has been to the PICU twice along with 4 Epilepsy Unit admissions. We have tried over 5 different medication from pill, sprinkles, rectal and only liquid he was able to tolerate. He is currently on 3 medications now. He has wonderful Autism intervention with school at Horace Mann. His teachers, Aids, and School Officials have been an amazing team to work with. We all feel so very blessed and he has made leaps and bound in one year alone. Things seemed to be getting better and better as the year went on, with medication control. We were all starting to be able to pin point when an exact seizure was occurring. He seemed to progressing normal, when he started to have long seizures again. He was controlled on the nasal Versed and seemed to return back to baseline. Now during this time, around January, Josh started to complain about his right side hurting. He had reported these symptoms to his primary doctor and at first we all thought it was the Gall Bladder after an abdominal US was done. But the results were negative and the pain seem to come and go. So Josh decided to just manage with the pain. By July, the pain started up again, but this time even worse. He went to the ER, at the Cleveland clinic and thought it was a flare up of Chrons', that he had had since he was 19 years old. He was treated with antibiotics and steroids and sent home. He made an appointment with GI and had to wait ALL THE WAY til September 20th, with a PPO insurance, to be seen. So in the meantime, he worked, commuted, and devoted to his family. While inside his body was in extreme pain. After the visit on the 20th, they had scheduled a colonoscopy 20 days later. He tolerated the procedure well and I had never left his side, besides him being in the OP room. He receive the results exactly 7 days later. Which now i know was the worst day of his life, they had found a tumor. I had a lot of optimize about it at first, but once we meet the Oncology Surgeon, this became so scary and I could feel my heart beat. The way I felt the day of surgery is indescribable. Sometimes you feel like you're in a slow motion picture, you notice and hear everything. I was actually fortunate to meet a family who was waiting for their son/husband/nephew/grandson. I happen to notice the aunt was wearing a Chron's disease Awareness shirt. I took my chances and struck up a conversation by asking about the shirt. The family I met was gracious and loving and they were happy to share their story with me. Look for my upcoming journal post, for a chance to read that story. In the end, Josh did well, the doctor came and saw me, any slow motion moment. Explained things went expected but had an abscess around his tumor so they had to take part of his abdominal wall as well. He assured me that the infection would be gone by now and recovery should go as expected. He said I could see Josh in recovery in 30 minutes. Well, 21/2 hours later I was able to see a some what of a version of Josh. But he seemed well. We got his to his room and unfortunately I had to go be with the children, but came back the next day. He was a stellar patient and did everything the nurses asked. He made me very proud. We have now been home 3 weeks now. The doctor explained we would get the pathology report in a week. On the Friday we were to receive the news, it was Veteran's Day and the doctors office was closed. We had to wait til Monday. Monday they had the results but the doctor would call Wednesday after he spoke with the board. On Wednesday, Josh and I went about our day and waited for a call, by 11 am, Josh got a call from Oncology to set up an appointment. It was Puzzling at first, why would they do this backwards? We don't even know what stages it's at yet, regardless he set the appointment and still hadn't receive a call from the surgeon, so he called himself. The nurse then explained that in his chart it stated the doctor had called at 8:25am. We both knew this couldn't be true because Josh nor I had any missed calls, maybe they had the wrong number but regardless, he spoke to someone else, not us. Josh explained this to the nurse and she said the doctor would call back. By that afternoon when I got home we stilled hadn't heard from the doctor so I called myself. This was CANCER results, for crying out loud. The nurse explained that Josh must of not remembered the call, because the doctor was adamant that he spoke with Josh. I explained again, this couldn't happen I was with him the time that he had charted that he called, so there is no way. She ended up telling me partially the results and my heart broke. It was Stage 3 Colon Cancer. And then we all became extremely angry and upset. To get a call from the nurse, not you're surgeon telling you, you have STAGE 3 CANCER. It was very absurd. Thankfully, Josh's home health nurse came on Friday and Josh told her the story. She was upset as well. She gracefully made a cal for us and finally the surgeon called Josh, with the same news before. Tomorrow Josh has an Oncology appointment to start his fight against Colon Cancer. During this last week, Wednesday we received the news about Josh and woke up the next morning to get the kids ready for school and Doyle was seizing at this point for I don't know how long, I went to treat with nasal Versed and the Atomizer was broken. I had then called 911 and 10 minutes later EMS was there. Luckily, we got the guys we were used too and they new what to do. They gave him an IV and nasal versed and the shaking had stopped. They didn't believe he had a seizure in the ambulance ride over but when he got to the hospital he has started to have another one. When we arrived it would about 15 minutes later, he was still seizing. It took almost 45 minutes for Doyle to stop having a seizure. He was admitted to PICU again where he was monitored with an EEG. He woke up the next morning better but not back to baseline they moved him up again to the Epilepsy unit and had the EEG on for another night. He has now stared on another medication, which makes at total of 3 in all, just for seizures. We were also told that he head only had damage on the left side of his brain, now it's in his right side, with seizure activity.
Our fight begin's again, now and all along.
We love and Thank you all for reading OUR family's story and will keep you updated with our journal entries.