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Before Patrick was diagnosed we knew something was wrong; we just didn't know what. A common story heard over and over from other families we have met. His lips would turn blue, he would sleep excessively, and we were told he had everything from a virus to whiplash.
On May 4th 2008 we finally got the answers we were looking for. Patrick was diagnosed with a pilocystic astrocytoma cerebellum brain tumor. Life as we knew it was about to change drastically. He went in for emergency surgery and they removed what they could. They could only remove the mass that was not hugging the cerebellum, the risk would have been too high for paralysis, blindness, or worse.
After this surgery, we had been warned of some of the expected long and short term deficits; but it didn't prepare us for the challenging road of recovery. After months of rehabilitation at Chedoke hospital, life was starting to come back to our new normal. Patrick continuedhis scans to check the growth of his tumor. To the best of our knowledge we weretold he was in the clear up until October 29, 2010. Naturally, we t want to believe it.
We were told he was going into a study to potentially help others. It was the most challenging 70 weeks our family has had to ever endure b of neutropenia (no immune system), weeks spent in the ward, hours of the day spent in the 3F chemo clinic at McMaster. It was extremely hard and frustrating. After thechemo sessions where finally over, Pat had to get MRI scans every three months. The surgeons were so satisfied, they scheduled for every six months. Finally everythingwas going so well, they felt confident to get yearly scans. The sense of freedom embraced us once more. All we had to do was catch up on our expenses and start living a normal life. 3 years had passed, we were almost forgetting the tumor still existed.March 9th, 2014 was a new day to never forget. The surgeon told us the cyst on the tumor had grown 4cm by 3 cm, and it needs to be removed once again.
April 9th was the set date for his operation. The scheduled time was for 8 hours; but they finished in 6. The surgery went extremely well and better than expected. Not two days later Pat was discharged from ICU and sent home. The news followed we would have to do this again in a year or longer. They were unable to grab the whole tumor.
Now as Pat has been recovering, and recovering well; his deficits have come to light. The main one is his eyes. Patrick has a stigmatism on his optic nerve something that since surgeryhas improved a little but not to the extent that it has given Patrick back his full sight back. He consistently feels that his eyes are relaxed. He calls this new normal which is very frustrating but I am sure this is how he wraps his head around it.
The other defect is his left leg as he has a loss of sensation. We have been working hard on rehabilitating him but after 4 weeks we are still trying to be hopeful that it will work itself out. Patrick get very tired fast and he has been resting a lot. After he exercises he takes a long rest and gets back up and continues doing something else. In regards this pain we have been under control more than not. Every day we just hope he becomes stronger and we keep thinking positive and deal with the obstacles that come.
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Suzanne, David, Patrick, and Hannah-Elizabeth
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