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.

~Ryan

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!

~Chantal