Supporting Bram Through His Cancer Journey

Some of you know my wife (Jennifer) and I (Russell) and know a bit about Bram’s dire situation.

My son, Bram, is 9 years old. He has been diagnosed with a rare form of brain cancer called Diffuse Intrinsic Pons Glioma. It’s a fatal, incurable cancer. The prognosis for Bram is dire. There are some glimmers of hope through clinical trials which are showing some promising results. We don’t know how much of the costs will be covered so we are creating this page to ask for your generosity to help us navigate this incredibly painful journey we are on.

Prior to all this Bram was the biggest personality in any room. On Christmas Day he was running around, opening presents, getting excited about what he received for gifts that day. Boxing Day morning and afternoon was more or less the same. In the evening, he went from running around to being unable to walk straight. It was Boxing Day and all the medical clinics were closed, so our options were to take him to emergency or let him sleep it off. He had a cold for the previous couple of days so it was at least possible that he was just weak from the cold. After watching him trying to walk a couple more times it just didn’t seem right. Off to emergency we went. We were seen straight away, which isn’t a good sign considering the room was full of sick kids. Bram was in the CT machine within about 30 minutes of arriving. When two doctors come in and ask to talk to you privately, you know something is really wrong. They sat us down and explained that he has a mass on his brain. We were immediately admitted to the hospital. After a significant amount of testing the doctors came back and told us Bram has a tumour in his brain. Not only in his brain, but on his brain stem.

The brain stem controls a lot of really important parts that you take for granted. Breathing, talking, eating, swallowing are all controlled in that area. So it made sense that Bram wasn’t able to walk and was having some difficulties with his coordination because the tumour was putting pressure on the area responsible for it.

Jen and I spent 3 weeks living at the hospital, trying our best to make Bram as comfortable and happy as possible all while he was slowly losing control of his body. We were also trying to grapple with our new reality that Bram is able to run around and laugh and now cannot walk by himself and was losing control of parts of his body.

Bram had an MRI of his brain as well as another CT scan for lower down in his chest area. They found a second tumour in his chest during the MRI and needed to do the second CT scan to see it better. It is twice the size of the one in his brain. We did a biopsy of the tumour in his chest and it turned out to be benign. It is rare for children to have cancer, it is incredibly rare for a child to have two tumours, nevermind two different kinds of tumours. This caused a lot of confusion for both the doctors in trying to diagnose Bram and for Jen and I to try to come to grips with this.

We have at least for the time being decided not to biopsy the tumour in his brain. The problem with doing a biopsy of the brain stem is that while you can find more information out, there is a very real possibility that in getting that information permanent damage can happen, even death. The doctors indicated the most likely damage that could be caused would be that Bram would lose the coordination on the left side of his body. Given he can’t use his right arm at all anymore and is slowly losing control of his right leg we couldn’t bear the idea of taking away the mobility he has on his left side, regardless of how much we desperately want any other diagnosis.

Using other tests and the various MRI/CT scans, doctors in Saskatoon, other parts of Saskatchewan, and the Sick Kids in Toronto are confident in their diagnosis without a biopsy.

Bram currently has reduced mobility on the right side of his body as mentioned. He also can no longer swallow liquids and has had a tube inserted in his nose to receive liquids and medication. Bram can’t smile or laugh much anymore, he has difficulty speaking, and has double vision. We want nothing more than to hear his infectious laugh and see that smile that brought out the biggest dimples on his sweet face. We’re trying to accept we may not get that pleasure again but we’re hoping more than anything we’ll be accepted into one of these trials that’s showing promise. All he wants is to be with his Mumma.

Our plans for the money are to use this to help pay for some of the hospital and related costs in the event we are accepted into a trial. If we are not, we will still be financially impacted looking after Bram over the next year (hopefully). All remaining money will be split between Cancer Research Canada and the Jim Pattison’s Children Hospital.