29 October 2012

Days gone by...

It's been nearly a month since we've updated the blog - it's been a tough month for our family.

On October 7th, we lost a beautiful woman, after a courageous battle to cancer - Ryan's Mother, Bonnie-Lynn Blundell. She will always remain in our hearts and we know she will watch over us and provide us strength to fight with Keian<3<3<3 Perhaps she selflessly gave up her fight, to surround Keian with her strength. I thank her for the gift of her incredible son, that she raised with such a powerful sense of family values - without him, we would not be Team Keian.

Keian's treatment has been pretty quiet this month - we barely got back on chemo for 2 weeks, before his blood counts crashed again. This time, the worst they've been. We're now on week 2 of being homebound. No matter how hard we feel it is at times constantly repeating day after day, it's so incredibly difficult watching a little 5 year old not being able to go to play with friends, or go to school - he's missing so much of just being a kid.

We did have a follow up appointment with Keian's Neurologist on Tuesday - we were able to finally get a glimpse of his MRI from when he was admitted for neurotoxicity back in September. Though Keian's symptoms have since subsided, there is a very strong chance he will have additional symptoms once he is back on the methotrexate. He will be getting a repeat MRI on Tuesday to form a baseline and show starting point. They would also like to compare to see if he has permanent scarring. This is one of the scariest things, aside from the original diagnosis. The methotrexate is one of the best drugs to treat Leukemia, but is one that is known for causing neurological deficits. Keian has increased sensitivity to this drug, and therefore we made the right decision to take him off the study and not subject him to the high dose.

Keian's appetite has depleted even more. We were told by his Dietician to offer him high fat meals, so that he would have some calorie intake. Despite our consistent offerings, he will either refuse or try to eat, which is usually followed by a bout of nausea and vomiting. Since being weighed last week, he has lost 4 lbs. 4 lbs may not seem like alot for you and I, but to a little boy that is fighting leukemia, every ounce makes a difference. He's needed more ondansetron this last couple of weeks, which helps to keep the nausea at a manageable level. Quite honestly, I'm extremely surprised at his energy levels considering his lack of nourishment. It's the little things now - seeing him jump up and down while playing Wii, makes me beam for the rest of the day.

Now that we have that all out of the way, we have a couple amazing things to share!

When at Keian's Neurologist appointment, we ran into his Oncologist - she had just gotten the results back from our blood tests the previous week. Ryan, Joren and I had our blood drawn to check to see if we would be a match for Keian's bone marrow. It was a very slim chance that Ryan and I would be and there was only a 25% chance that Joren would be a match. Well, that 25% chance became our reality! Joren is a perfect bone marrow match! As of right now, this is just information. We are positive with his results, so far, towards treatment and are still keeping the hope that he will not require a transplant. But, if it's ever needed, his little brother will be able to give him the biggest gift of all.

Over the weekend, one of our bestest friends, who happens to be an incredible photographer came for her weekly visit <3 This time, she came bearing her camera. She captured some pretty special moments for us. One of her good friends custom made a Kaptain Lasers costume just for Keian. Let me tell you this...the pictures do not do it justice. Keian just beamed from ear to ear the second he saw it flash in front of his eyes. This truly completes Team Keian.

To those of you that have showed remarkeable support over these last few months - we couldn't be as strong as we are right now without you. We thank you from the bottom of our hearts - for your countless messages of encouragement, meals, hugs and un-ending friendships that grow with every word. We love you all so very much<3

3 October 2012

Back to life, back to reality

We are now almost two weeks into our regularly scheduled visits and I’m impressed by how easily we have gotten into the swing of things. When we first came back to the hospital, it was recommended to us that he be taken off of the study and administered the standard treatment. In fact, it was even the Study Chair that recommended it. Here’s where we became concerned. The study involved a higher dose of Methotrexate, which is said to potentially decrease the risk of a relapse. The down side is what we saw a couple of months prior – Methotrexate induced neuro-toxicity. We saw a slowed, slurred speech in Keian, as well as involuntary movements in his limbs. Their concern is that, due to his visible sensitivity to the drug, the side effects stood a good chance of becoming worse or even permanent. They also had the option of offering a “rescue” drug, which essentially pushes the Methotrexate out of his system quicker, therefore decreasing the chance of toxicity – problem being is that they aren’t certain that it only rescues the body from drug. There’s a possibility that it may rescue the Leukemia cells, as well. The decision was ultimately ours, but how do you choose?

We decided to look at it based on quality of life. The chances of a relapse were still relatively low on the standard treatment, and the chance of side effects were reduced as well. He will still receive the Methotrexate, but at a lower dose than if he would remain on study. We believe that Keian will continue to be the strong boy that we know he is. He has been looking great throughout the treatment, had very few periods or fatigue and a handful of moments of sickness. His response has also been great so far - being a rapid early responder and being officially in remission, as planned. We want to give him the best fighting chance, without affecting how he enjoys life.


We haven’t had a lot of time for things, but this past weekend, Ryan and I were able to get out to enjoy ourselves a little. Ryan went off for a boys night and played Beer Pong and I went out for a girls day and got a pedicure. I think it’s important for us to get out sometimes together, and separately, especially with the stressors we face weekly. Our marriage is stronger than ever – we pull from eachothers strength and fall in eachothers arms when we need to!

We’re nearing the end of the 2nd week of chemo treatment after the nearly 3 weeks of being at home. With that, comes low numbers again. We’ll be having a quiet Thanksgiving dinner this weekend. Though at times it may seem we don’t have much to be thankful for during this all, we definitely do. We have a beautiful little 4 month old that is happy and giggly and growing into a “little” Ryan. We have an absolutely amazingly tough, brave little 5 year old that has shown us how to appreciate every single day, every single second. Ryan and I are not only strong as a man and wife, but as a family.

I love knowing that we can still have fun and make life as fun as we can for Keian – he would have loved seeing his Daddy robot dance tonight, haha. We can all still make eachother laugh – we’ve got that, we’ve got eachother, we’ve got everything. So much to be thankful for <3

Wishing all of our wonderful friends and family a Happy Thanksgiving! May you always be thankful for what you’re given! Love to each and every one of you!