On June 4th, our little baby boy celebrated his 1st birthday! We had a nice quiet birthday for our little spitfire ginger at Queen Elizabeth Park with just our small little family. Throughout this last year, he has grown into such a goofy, happy, sweet boy. He's a spitfire alright - just what you'd expect from a ginger, and just as clumsy as his Daddy. We've had falls and bangs and bumps and LOTS of bruises. He isn't just walking, he's running...everywhere. He's been a huge blessing - always smiling and squealing with delight. I love how Joren and Keian are so different from each other, yet I still see so many similarities. Keian had so much fun at the park and Joren couldn't take his eyes off of anything Keian was doing. He bombed around the shady trees in his ATV, even crashing head on into a tree. Of course once we made sure he was ok, we all had a crazy laugh. I wish I had it on camera when it was happening – one of those typical “Hey, Mommy/Daddy look at what I can do” …he brought a whole new meaning of “keep your eyes on the road”. He’s gotten a few practice runs in the SUV in the empty hospital parking lot the last couple of months, as well. To this day, I’ll always remember when my Dad took me “driving” at his age. Keian wanted me to make Joren his cake, just like we did with him when he turned 1. With limited supplies in this apartment, I was pretty happy with how it turned out. Joren definitely got dirty – cake smash on the tray! He seemed to like the icing best, but has since made it pretty clear that he loves chocolate.
For anyone that knows Keian, you know his obsession with Superheroes. He’s been waiting for the new Superman movie to come out for what seems like forever. He won’t be allowed in public for a while now – how lucky for us was it that The Man of Steel was playing at the drive-in?! After a call to his Oncologist, we were given the ok to take him out. What a great movie, what a great outing! He even managed to keep his eyes open for the entire show! Though I could have done without the dead battery that came with it, the night was pretty wonderful! Die-hard Superman fans, Ryan and Keian couldn’t leave home without their t-shirts to show their love.
Finally, the chicken pox isolation was lifted! He and all the other children that had been exposed were given the all clear. Though Keian is still in transplant isolation when entering the hospital for his clinic visits, it’s much less stringent than a combination transplant/varicella. They have also been decreasing his cyclosporine levels and hope to have him off this by around day 100. Today marks just less than 2 weeks before he sits at day +100 post transplant. On July 9th, he is booked in for a bone marrow biopsy and lumbar puncture to check for any residual Leukemia and to see how effective Joren’s bone marrow has been this past 2 months. I’ve been walking on egg shells with the mere thought of this. We’ve been told, which seems like numerous times now, that this is his chance. There are no more chances, no more options, and no more treatment available. I like to fully believe that we don’t need anymore chances. He’s fought hard, he’s fought well and he continues to do so everyday. Though I believe it, it’s hard to get to the point that it’s all that naturally repeats itself. It takes work and strict dedication to repeat this to yourself every waking minute. I have faith in Keian and his determination to beat this.
Just as all of Keian’s peers are finishing school for the year, Keian will be somewhat beginning. Starting on July 14th, he will be in the BCCH school room for a couple of hours a day for the month. He hasn’t had a scheduled routine with school work, though has had one-on-one time with the teachers that are at the hospital. I’m hoping that while he will not be able to return to school until next year, that he will ease into a more natural, classroom guided learning style. He’s an incredibly bright, well-versed 6 year old. Sometimes it’s hard to see him as that. I have to learn to give him room to grow, room to grown into the incredible little boy that I know he is. It’s hard to let him go, even a little. After this year, I haven’t wanted to let him out of my sight, for fear that if I wasn’t watching, just for one second, something would go wrong. I’ve realized that he needs that growth and some of that, he needs to do on his own. He’s ready, I know it. This is just something that I need to work on and allow myself to grow within myself. It's hard to think of yourself. As parents, we are engrained with the needs of our kids.
July will also bring on some pretty emotional days. On July 15th, Ryan will return to work. I know that he will be in great hands and that they will help him ease into the transition that we all know will be extremely difficult. Though Ryan and I will have our own emotions on this day, I am concerned with how Keian will wrap his head around things going back to “normal”. “Normal”, now that’s a word that brings on a lot of confusion for me. I’ve noticed that many people assume that now that Keian is in remission that things go back to normal. What is normal anyways? This past year, normal for us has been all about adjustments, sleeping in someone else’s bed with sheets that smell like chemicals, sickness, crying, kicking and screaming, breakdowns, strain, stress, eating, eating, eating and eating. For me, normal would be for my little boy to remain a little boy and to be able to live the rest of his life without worry or fear. I am determined to make this his “normal”, regardless of what may or may not lie before us. Even with his brother’s bone marrow donation, we still face a 50% chance of relapse for the next 5 years. On top of this, we need to continuously look for any signs of a secondary cancer, which is known to accompany the treatment that he endured to allow transplant, as well as potential physical/neurological damage caused by the chemo and radiation. Despite this, we keep our chins up and take this step by step, day by day. Throughout his journey we have made sure to instil the fact that he possesses an un-nerving strength and courage and is loved beyond measure. I feel like I’m looking at myself from the outside – I think that’s why I feel that I can finally begin to process everything that’s been our life for the last year. There are a lot more emotions than even I expected that surround this realization. When you’re living the life, it’s just what you do. You live it from day to day - even hour to hour and minute to minute some days. You’re not given a choice; it’s just what you do. This is something that has changed me forever. It already has. I have learned the importance of patience and understanding deeper than I ever expected. I have learned that sometimes, people just don’t know what to say. I have learned how to let go and how to hold on, most importantly, I’ve learned the difference between the two. It’s time to take his lead and learn to live.
