Brain tumour ...
Signs
Around June 17th, 2015, Ben received a hit to the head from a badminton racket. His head hurt for a while but seemed to go away. He then had to write 2 exams the following 2 days. He complained about his head hurting on the left side and some confusion. We took him to our family doctor and he suggested rest for a concussion. So he rested for a couple of weeks. Ben slept much of the day with very little energy. When he got up his head hurt more. Then he seemed to forget things and couldn't find his words, so we took him to emergency at the local hospital. They suggested the same with rest and Tylenol. A week later we went back to our doctor, seeing no improvement, and were told, yet again, to give a few more days with Tylenol and then return to see him after the weekend. That Saturday, Ben got up after resting on the couch but when he smiled only the left side of his face smiled. His face returned to normal after about 30 secs. We immediately thought maybe a mild stroke? Now we were worried. We took him to emergency at our local hospital, again. There doctors looked him over and asked about his history. We told them everything. They debated about doing a CT Scan as they didn't want to expose him to more radiation and they didn't really think it necessary, especially after consulting with the oncologist on call. So, again, home with Tylenol etc. Meanwhile, we emailed Ben's oncologist, who cured him of leukemia. She responded saying it was "concerning" and that she would like to see us on that Monday (July 20th). Meanwhile, I looked up symptoms for concussions and brain tumour. They were almost identical except a few differences. That got me worried.
Around June 17th, 2015, Ben received a hit to the head from a badminton racket. His head hurt for a while but seemed to go away. He then had to write 2 exams the following 2 days. He complained about his head hurting on the left side and some confusion. We took him to our family doctor and he suggested rest for a concussion. So he rested for a couple of weeks. Ben slept much of the day with very little energy. When he got up his head hurt more. Then he seemed to forget things and couldn't find his words, so we took him to emergency at the local hospital. They suggested the same with rest and Tylenol. A week later we went back to our doctor, seeing no improvement, and were told, yet again, to give a few more days with Tylenol and then return to see him after the weekend. That Saturday, Ben got up after resting on the couch but when he smiled only the left side of his face smiled. His face returned to normal after about 30 secs. We immediately thought maybe a mild stroke? Now we were worried. We took him to emergency at our local hospital, again. There doctors looked him over and asked about his history. We told them everything. They debated about doing a CT Scan as they didn't want to expose him to more radiation and they didn't really think it necessary, especially after consulting with the oncologist on call. So, again, home with Tylenol etc. Meanwhile, we emailed Ben's oncologist, who cured him of leukemia. She responded saying it was "concerning" and that she would like to see us on that Monday (July 20th). Meanwhile, I looked up symptoms for concussions and brain tumour. They were almost identical except a few differences. That got me worried.
Diagnosis
We came into Children's Hospital that Monday. He had blood work done, which was perfectly fine. She suggested we do a CT Scan and she got us in right away. We waited for results. Then Ben's oncologist came in with two other nurses and told us the news. Ben had a 5cm brain tumour on the left side of his head. Of course, we were devastated! We thought all this was just a concussion with maybe some bleeding involved. We had absolutely no clue it could be this especially since all the blood work always came back perfect. So right away he was admitted, they did a MRI to get a better picture. We were then told that he has to be operated on the following morning. I stayed over night with him.
Brain surgery
The following morning at 7am, nurses, doctors, specialists, brain surgeons, fellows, and anaesthetists came in and out of the room. He was prepped and I went with him into the operating room. Scary place! I saw in the back the MRI of Ben's head showing the massive tumour. It was way bigger than I thought it was. Almost the size of a tennis ball. Ben was quite strong and didn't seem nervous at all. I guess with everything he's been through since 2002, he's able to take this all in. I held his hand while the anaesthetist injected the the medicine to make him sleep. It was difficult to be strong at that point.
We came into Children's Hospital that Monday. He had blood work done, which was perfectly fine. She suggested we do a CT Scan and she got us in right away. We waited for results. Then Ben's oncologist came in with two other nurses and told us the news. Ben had a 5cm brain tumour on the left side of his head. Of course, we were devastated! We thought all this was just a concussion with maybe some bleeding involved. We had absolutely no clue it could be this especially since all the blood work always came back perfect. So right away he was admitted, they did a MRI to get a better picture. We were then told that he has to be operated on the following morning. I stayed over night with him.
Brain surgery
The following morning at 7am, nurses, doctors, specialists, brain surgeons, fellows, and anaesthetists came in and out of the room. He was prepped and I went with him into the operating room. Scary place! I saw in the back the MRI of Ben's head showing the massive tumour. It was way bigger than I thought it was. Almost the size of a tennis ball. Ben was quite strong and didn't seem nervous at all. I guess with everything he's been through since 2002, he's able to take this all in. I held his hand while the anaesthetist injected the the medicine to make him sleep. It was difficult to be strong at that point.
The operation began around 9:30 after Ben's stabilization from the anaesthetic. We waited in a small room for any news of how he was doing. We would get a call or two from the anaesthetist to tell us where they were at. Once he mentioned they had removed a third of the tumour. After 3.5 hours on the operation table, they started closing up. The surgeon, a very renowned doctor (Dr. Steinbok), came in to tell us how it went. It went perfectly and as expected. Most, if not all of the tumour was removed. Ben did very well and was in intensive care for recovery. Obstacle 1 - complete.
We were allowed to see Ben a couple of hours after his surgery. He seemed surprisingly quite fine, especially having gone through brain surgery. He still had all of his hair left except where they made the incision. He seemed in good spirits!
We were allowed to see Ben a couple of hours after his surgery. He seemed surprisingly quite fine, especially having gone through brain surgery. He still had all of his hair left except where they made the incision. He seemed in good spirits!
The swelling on the left side of his face started a few hours later. It swelled considerably but didn't hurt. Just uncomfortable. The next day he had a black eye on the left side. All this is normal. Intensive care was not too much fun at all. He was to be woken up every hour the first night to check how he was doing. Then he was woken up every 2 hours. We were anxious to go up to floor 3R where he could have his own room and sleep for longer periods. There were a few other patients in intensive care that were quite loud especially during the night, so that didn't help the resting. The following day, around 1pm, he was allowed to go up to 3R and his own room. There, he stayed to recover for about 4 days. Everything went according to protocol. He caught up on his sleep. He had headaches here and there as the swelling went down and things moved back into place in his head. We shampooed his hair once which felt "strange" Ben said. He was released to go home that Friday. It was one crazy, stressful week! And we had just come in for a consultation that Monday morning!
Treatment
Next on the protocol for Ben was to take chemo at home. Many pills everyday. He was also to have 33 sessions of radiation to his head to get rid of any left over tumours and to prevent others from growing. We went almost daily to the BC cancer Agency for his radiation. He usually felt fine after the sessions. After a while there was some "burning" on the left side of his face from the radiation and his hair fell out on the back and the right side of his head. That didn't bother Ben too much/ Thats what hats are for.
Chemo continued at home. A few sick days but mostly just being tired. He attended school, which is all he really wanted to do. He wanted his friends around and have as normal a life as possible.
MRI's + trying to make the best of it
MRI's showed large white areas which was thought to be radiation necrosis for the longest time. PET scans did not show activity related to tumours. That was a happy time for Ben and all of us!
Treatment
Next on the protocol for Ben was to take chemo at home. Many pills everyday. He was also to have 33 sessions of radiation to his head to get rid of any left over tumours and to prevent others from growing. We went almost daily to the BC cancer Agency for his radiation. He usually felt fine after the sessions. After a while there was some "burning" on the left side of his face from the radiation and his hair fell out on the back and the right side of his head. That didn't bother Ben too much/ Thats what hats are for.
Chemo continued at home. A few sick days but mostly just being tired. He attended school, which is all he really wanted to do. He wanted his friends around and have as normal a life as possible.
MRI's + trying to make the best of it
MRI's showed large white areas which was thought to be radiation necrosis for the longest time. PET scans did not show activity related to tumours. That was a happy time for Ben and all of us!
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Unfortunately it was short-lived as after a while, it was found that all that white area, on the MRI, was actually tumour. He was on Dexamethasone to keep the swelling down but it was out of the doctors' hands at that point. |
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Children's Wish Foundation granted him a wish. He chose to go to San Diego to attend the Comic Con there at the end of July 2016. He was very excited. However, with the recent events, it was decided that he needed to change his wish to something in the very near future. He decided to go to Hawaii. We all had never been there and, since he loved marine biology and anything to do with the ocean, he thought this would be a great trip. Everything was organized. The day before we left (May 28th), Ben had some type of "seizure", where the tumour had acted on his brain causing him to be very sleepy with a headache. He could not get up and his right side was numb and unresponsive. After almost 24 hours like this, we had to cancel his wish to go to Hawaii.
Things are getting worse + Canuck Place Hospice
Ben went to Children's Hospital to see what was going on. There was progression, meaning the tumour was spreading. It was decided that he needed to go to Canuck Place Children's Hospice. The first week there, he was able to get up, talk, eat and watch TV. So on Father's Day, we decided to take Ben home, after having a bed placed there by the Red Cross (since going up stairs was not possible). He was so glad to be home. We stayed at home for four days. On the fourth day, Ben was more and more sleepy and hardly ate anything. So we decided to return to Canuck Place.
The end ...
At Canuck Place, Ben didn't eat and spent much of his time sleeping but able to answer simple questions with one or two word answers for the first week. He was on Dex still to keep the swelling of the tumour down as much as possible. He continued like this with no food or water for 16 days! Ben passed away at 10:58am Friday, July 8th, 2016.
Ben was a kind, positive, happy, and a courageous fighter. He never once gave up hope or made a negative comment about his condition. He is our inspiration.
Ben wrote a science fiction novel called 3 Realms from age 12 to 16. We are currently in the process of publishing his book which will hopefully be available in May 2017.
Living with the loss
We are trying to cope with the loss of our dear Ben. Losing a child is so difficult and life-changing. It is not the normal progression of things. Each of us in the family is dealing with it at our own pace and we're not at the same place. The house is silent, lifeless and hardly and joy happens anymore. Sunny days are not happy, rainy days are more depressing. If life returns to normal eventually after the loss of a child, I don't see that happening in the near future. It is all so devastating.
You can read more current details about Ben on Ben's Blog.
Things are getting worse + Canuck Place Hospice
Ben went to Children's Hospital to see what was going on. There was progression, meaning the tumour was spreading. It was decided that he needed to go to Canuck Place Children's Hospice. The first week there, he was able to get up, talk, eat and watch TV. So on Father's Day, we decided to take Ben home, after having a bed placed there by the Red Cross (since going up stairs was not possible). He was so glad to be home. We stayed at home for four days. On the fourth day, Ben was more and more sleepy and hardly ate anything. So we decided to return to Canuck Place.
The end ...
At Canuck Place, Ben didn't eat and spent much of his time sleeping but able to answer simple questions with one or two word answers for the first week. He was on Dex still to keep the swelling of the tumour down as much as possible. He continued like this with no food or water for 16 days! Ben passed away at 10:58am Friday, July 8th, 2016.
Ben was a kind, positive, happy, and a courageous fighter. He never once gave up hope or made a negative comment about his condition. He is our inspiration.
Ben wrote a science fiction novel called 3 Realms from age 12 to 16. We are currently in the process of publishing his book which will hopefully be available in May 2017.
Living with the loss
We are trying to cope with the loss of our dear Ben. Losing a child is so difficult and life-changing. It is not the normal progression of things. Each of us in the family is dealing with it at our own pace and we're not at the same place. The house is silent, lifeless and hardly and joy happens anymore. Sunny days are not happy, rainy days are more depressing. If life returns to normal eventually after the loss of a child, I don't see that happening in the near future. It is all so devastating.
You can read more current details about Ben on Ben's Blog.