Brainstem Cavernoma

It seems we have gone from one extreme to the next. We had an exciting fall with our YouTube video, followed by Christmas and here we are just starting into March and we need your prayers.

I was planning to attend an event in Florida at the end of March. I had my plane tickets booked, hotel booked and passport in hand. The weekend of February 25 we started noticing some strange signs that something wasn’t right with Lyndan our 8 year old son. We kept excusing the things we saw as him being an 8 year old. His pattern was to always complain about some ailment when asked to do chores and so when he complained of being dizzy, we felt it was another excuse. He had figured out how to go cross-eyed so when he looked at us funny, we thought it was just that – him goofing around. Monday, he went to school and there was nothing eventful about that day. The teachers now say that he seemed a little off but felt that maybe he didn’t have the best night’s sleep. Then came Tuesday.

I went to work while the boys were getting ready for school. Lyndan was taking his time and I encouraged him to watch the time and be ready for the bus. I left for work while my husband kept everyone moving. It was 3:10pm when I got a phone call from my husband. The teachers had reported to him what they had seen at school and were very concerned. He wasn’t able to pick things up off the floor, couldn’t see a hand being waved to his right side, lack of focus, walking like he was drunk and his eyes were not centred. My husband said he was bringing him in to the ER and since I was already at the hospital cause I work there, I stayed put.

I met them in the ER and was very concerned by what I saw. How he looked at me was not the same as when I saw him in the morning. He was unable to stand without losing his balance and he was seeing double. The ER staff were great and skipped him past the waiting room, taking him straight into the back. The ER Dr assessed him and had the on-call pediatrician come in. He was assessed again and then sent off for an MRI. Our fears were confirmed when they came back with the diagnosis of a tumor at the middle of his brain. When asked about a biopsy, the pediatrician understood that given the location, a biopsy would not be possible. We were to stay the night and wait to go to the Children’s Hospital in the morning.

Wednesday morning they set up an appointment for the following day at the Children’s Hospital Outpatient Oncology clinic. We live 3 hours away from the Children’s Hospital so we left that afternoon and stayed with family that evening. The drive was a tough one as my husband and I were both emotional but we really couldn’t discuss what was going on with Lyndan sitting right behind us in the backseat.

Thursday we left for the Children’s Hospital and it was difficult to walk onto the Oncology unit. As a parent, you really don’t want to admit your children to a cancer clinic, but there we were. Lyndan was now in a wheelchair as we had to hold him up while he walked to prevent him from falling over. His dizziness from double vision was too much and he was having difficulty walking as a result. It wasn’t easy seeing my energetic and physical boy so exhausted in a wheelchair.

The staff at the oncology unit were fantastic in how they spoke with Lyndan and looked at us. They have been there many times for families and knew exactly how were were feeling. They made sure that he knew he could hear as much or as little as he wanted. He was assessed by the oncology team and while they were reviewing his MRI and their findings, we went for lunch. When we returned, they had set up an appointment with neurosurgery to look into the possibility of doing a biopsy. The appointment was for 1pm and it was now 12:15pm.

We hung around in the waiting room for his appointment. Lyndan played his DS (he could see if he looked to the left), and we spent our time trying to update as many people as possible. The number of messages we were receiving was overwhelming. At last they called us in and we sat in a small examination room and waited but this time, it was for the neurosurgeon. This department was as friendly as the last but we barely started talking when they said that we can’t have a discussion until they see another set of MRI images. What they were seeing didn’t quite look right to them and they needed vascular images – they needed to see blood. Away we went for a second MRI.

Lyndan was wonderful at the first MRI and stayed still without sedation and did the same for the second MRI. The second MRI went faster than the first as they didn’t need as many images but it still felt like it took forever. It guess it would feel that way when you just want answers.

When it was over, we returned to the neurosurgeon who sat down with us and turned to Lyndan with the following question: “Would you like the good news first? Or the bad news first?” Lyndan didn’t quite know what to answer and simply answered, “I don’t know.” I said that it would be nice to get some good news, so let’s start with that. The neurosurgeon stated that he did NOT have a tumor. That was the good news. The bad news was it was a cavernoma malformation at his brainstem and he would still need an operation.

After they finished explaining to Lyndan, they took him to another room for an assessment with the nurse practitioner while we had a more serious discussion with the neurosurgeon. It was time to talk surgery risks. Any number of things could go wrong with his brain surgery from breathing issues resulting in the need for a tracheotomy, swallowing issues requiring him to have a feeding tube into his stomach, stroke, vision problems, vomiting…. the list goes on. If we were to leave it alone and choose no surgery then we risk another bleed or two or three and a final bleed that could kill him. Surgery means he will live and the serious complications are not guaranteed. Further bleeds are since his cavernoma has bled already and at his brainstem.

We made the decision to proceed. We feel pretty good about our decision. If the neurosurgeon felt strongly that we were making the wrong decision, I suspect we would have heard a few more words of caution to steer us away from it but we said yes and that was that. Papers were signed saying we give consent for the treatment and now we wait.

Surgery will be in the next couple of weeks. They said they would like it done within the next 2 weeks. He will have it done at the adult hospital as they have an MRI machine in the operating room. They will be working on booking a date and then will let us know. We get to all be at home now and wait for the date to be booked. We’ve done a lot of waiting already and it isn’t going to end anytime soon.

Wait for a diagnosis – DONE
Wait for a surgery date – In Progress
Wait for surgery day to arrive – Coming Soon
Wait for surgery to start – Dreading it
Wait for surgery to be over – Wishing it already was
Wait for the current symptoms to be resolved and Lyndan be back to his old self – Can’t come soon enough.

Cheryl

Cheryl lives in Alberta, Canada with her husband and six boys. She has been on YouTube since 2010 and is focused on highlighting the fun side of parenting. She is a soon to be published author and has a passion for helping others by sharing the tips and tricks she has learned along the way.

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About Cheryl

Cheryl lives in Alberta, Canada with her husband and six boys. She has been on YouTube since 2010 and is focused on highlighting the fun side of parenting. She is a soon to be published author and has a passion for helping others by sharing the tips and tricks she has learned along the way.

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