28 November 2012

Keep repeating - "Positivity shall prevail"

So, most of the results of what we've been waiting for have came back. When Keian got his chemo on Monday, they took a nasal swab to see what type of germs were harbouring. Blood cultures for bacteria came back negative, which means there is no internal infection! He has a bad cold, which explains the fever - he didn't have the "typical" cold symptoms, so that's why they were initially concerned. We're still waiting on the results for the blood tests done to determine the cause for the grey matter changes, but we received a call today from Keian's Neurologist to tell us that they received funding for a special genetic test that would be able to determine if Keian has a pre-disposed sensitivity to methotrexate, which is amazing!

On Saturday, prior to the whole fever happening, we went to take the boys to visit Santa - one of Keian's favourite things, though really, anything Christmas will have the word favourite in it for him! Of course, as we're always concerned about germs (Purell is our best friend and we are likely their best customer), we got up extra early, so that we could be first in line - success. This isn't the best picture quality, as I took a quick shot with by phone after picking the pictures up from Potters today.

Tomorrow, we will be starting the whole decorating process - I think we're all excited to make it truly feel like Christmas. We're already trying to compile a list of where we can go for our christmas light display drive around. Yet again something Keian just LOVES!

Touch more good news is that Keian is starting to feel a little better, but unfortunately his little brother is now suffering the brunt of it. While Daddy took Keian to his chemo yesterday, I had to stay home, which was good and bad. This was the first time ever that I have missed one of Keian's treatments, which killed me that I couldn't. Joren spent the day in my arms sleeping - trip to the Doctor for him once the boys came back from BCCH came back as a positive for the stomach flu. I think it'll be a short one for him though, as he's already starting to turn around to the happy little guy we know and love.

We were sent VIP tickets to see the Santa Claus parade downtown this Sunday, which was so amazing! We will have to be extremely careful (less busy in the area that we will be sitting in) and may need a stack of masks. We'll be sure to sit in the first row of bleachers, as if there is anyone that has a cough, they'll be behind us. Keian is so excited!

And sometimes the good must come to an end - Keian's blood work was redone on Monday. Neutrophils had crashed from 3.16 on Saturday, to .87 on Monday -nearly critical. They will continue to drop, bringing him into extremely critical. This was much earlier than anticipated, as they aren't typically expected to drop until between Day 30-40 of this phase - we are currently on day 21. So, this means that we may be in for an extra long haul of entrapment. I felt so horrible on Monday when we were told this, as we had just finished talking about how we were going to head to the yearly trip to Bright Nights in Stanley Park on Thursday (opening day). Of course, with his counts being as they are, this isn't a possibility.

Ryan and I usually take turns putting Keian to bed and tonight it was Daddy's turn. As Ryan was tucking him in, he said "Keian the brave!!". Keian responded with "Oh, stop it Daddy". Ryan then told him that we think that he should be known as Keian the brave and that both of us were so extremely proud of him with how hard he has been fighting and how he always managed to smile, no matter what. Keian's response - "I'm SOOOO excited!!!!" Daddy - "Why?!" Keian (with a typical Keian smile that he's so well known for- "Because you guys are so proud of me!" This kid just warms my heart<3


25 November 2012

Holding him close

Today Keian woke up sick. Not cold sick, he just seemed off. He vomited twice in the morning and barely ate for the entire day, but insisted he was well enough to go to visit Grandma and Grandpa. After a couple of phone calls from my Mom, we soon realized it was a little more than just chemo related sickness. He was dropped back at home just after dinner and within 20 minutes, his fever had sky rocketed up to 38.6c. When a child has cancer and is undergoing chemo, having a fever is not a good thing - it could indicate internal infection, sepsis (infection in the blood), or a flu. Neither of these are good, but the flu is the lesser of the evils. As chemo patients are immuno-comprimised, they are more suseptable to viral and bacterial infections - some of which are quite serious. I'm sitting at Children's Hospital at this very minute waiting for antibiotics to enter his bloodstream. Apparently, they won't have bacterial cultures back until Monday morning, so they are giving us a 24 hour dose by IV and sending us home. There's not a lot we can do until we have the results. Some news we were definately not expecting to hear tonight from the Doctor - they detected a heart murmur. What?!?! She says it could be a murmur that was undetected,could be benign (won't cause any problems), or it could possibly be damage done to his heart from the chemo. Yet another thing to add to his little fighting body. We will be able to discuss the heart and the blood results Monday morning with his Oncologist, but until then we wait. Keian just fell asleep - he's so exhausted - atleast we have a room in Emergency. Joren is spending the night over at my Mom's, as we'll be getting home during the middle of the night. I plan on having Keian snuggled right into me tonight. I don't think I've ever appreciated my little boy more than I have this last couple of months. He is my hero. ~Chantal

15 November 2012

Kaptain Lasers meets kindergarten

I can't believe how fast time passes. I logged on write today, and realized it's been over 2 weeks since my last update.

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