What has happened these past few weeks -
In the words of Keian "This was the best Halloween EVER!" I think it's the overall fact that as he is growing, he is enjoying the fact of getting candy more and more. This Halloween was actually miserable - it was a downpour and we were huddled under umbrellas as we scoured our streets. We were out for under an hour, as he did get tired quite quickly. He managed 2 streets, before he said he had had enough, which was actually a little more than I thought. It could have also been the best Halloween to him, because of what he was wearing for his costume! Our own superhero switched into the life of the one and only, Kaptain Lasers! Not one of the pictures turned out from trick-or-treating due to the weather, so it was a good thing that I took time for a little photo op before heading out.
After being stuck at home for a couple weeks, his blood counts came up enough that he was able to continue chemo, so last Tuesday, we started on the familiar trek back to Children's (Keian calls it "my hospital"). This was NOT a good day for him. He seemed to be ok until we got to the clinic. Ryan dropped Keian and I at the door and went to park the car, since it was raining. When the nurse called us in the room to get his IV started and prepped for his LP, he appeared quite scared, until he asked me to take him to the bathroom. The door to the bathroom closed and he immediately started crying. He was upset that they would take him to the surgical room before Ryan got inside. He was definitely scared that day. It had been a while since he had been at the hospital for treatment, and as weird as it seems to say, without going to the hospital for treatment, life became a little more like it was before his diagnosis. LP’s and Bone Marrow biopsies are one of his least favourite things, and this day he needed to have an LP. My Mom kept Joren for the day, so we were able to devote our entire selves to Keian - we both hold his hand every second of it. Even though he’s very out of it, he smiles adoringly every so often and whispers “I love you”. I honestly think he is one of the few 5 year olds that are willing to show their love as freely as Keian does – we are so lucky.
His appetite is still touch and go. He’s a big, tall boy – even now with the weight loss, but it’s definitely a noticeable change. This phase is aimed at being a little easier – being that we will be going twice a week every 10 days for the duration of this 2 month phase. This is definitely an extremely risky phase for him though, as he receives IV and IT Methotrexate, which is the drug that caused his original Neurology symptoms. Speaking of which, we got the results back from the repeat MRI – not the best news. The damage (bright white areas that show on the MRI) has still remained. They had hoped it would have retreated now that his symptoms have subsided. Apparently, it could be one of 3 things: Methotrexate induced neurotoxicity (which basically means that he is extra sensitive to the drug and it causes damage to his brain, which results in neuro symptoms – last time it was slow, slurred speech and ataxia). So, if this were the case, at any given time these symptoms could return, he could get increased symptoms and they could worsen over time or even be permanent. The problem with this is that there really is no choice on whether he gets this drug or not – it’s one of the best cancer drugs to keep it from returning to his brain. The 2nd possibility was that he was born with it – which they think is unlikely. The 3rd possibility is that he has a storage disorder, which basically means that his body is unable to process lipids and figure out where to store it. It will then build up in organs, including the brain. This can cause something as simple as an enzyme deficiency or something as major as serious brain damage. So, as you can see, it’s not the best news. They tell us that it isn’t very common to see these reactions to Methotrexate, but they do happen. They took a blood test when we were there last week, which will tell us whether he has the storage disorder and if those results come back negative, we just have to watch for any additional neurotoxicity. He got his first IV dose last week, on top of the IM, and so far so good! We think positive thoughts<3
Onto exciting things! Keian went to Kindergarten for the first time on Wednesday! He was soooooo excited, it was unbelievable. I figured I was going to be emotional when he started kindergarten before he was even diagnosed, but it was different this time. Very rarely has Keian been away from us since July. To be with his Grandparents or close friends of ours is about it. With the way he feels at times and his unexpected bouts of nausea and vomiting make me queasy thinking that I may not be there when it’s happening. The hospital had suggested at the time of his diagnosis that we home school him for kindergarten, as he would be missing so much school. Ryan and I felt that it would be best to enrol him in a directed learning school, where he could at least join with the other kids once a week and then we could teach him at home the remaining time. We dropped him off at 9 am and had planned on checking on him at lunch hour, but we received a phone call at 11 am from his teacher asking us to come as Keian wasn’t feeling well. I think it might have been him being slightly overwhelmed. He finished preschool 5 months ago, and has been through an awful lot this summer. We are SO extremely proud of him for trying! In the words of Keian – “school was awesome!” He told us about how one of the boys asked him to play lego with him – he was so happy about that! He even got to go outside to play with the other kids. He says he wants to go back, so next Wednesday, we try again, and maybe he’ll feel comfortable enough to stay a little longer. Either way, I honestly don’t think I could feel more pride – this boy literally lights my entire life!!!
The countdown is on! 15 days until we decorate our tree for our favourite time of year! This year, it means more to us than ever before. We may not have a lot of money, but we have more love than ever and that's what fills our hearts with the magical Christmas spirit. We're already one of those crazy families that drive around screaming Christmas songs in the car. With Christmas around the corner, out comes our yearly tradition of the Stanley Park bright nights train - Bring on the Christmas cheer!
I'll end this entry with a couple pictures of Keian, on his first Christmas<3
~Chantal
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