count down to a cure

PHASE 5: MAINTENANCE

The weather heated up for a moment and Braveheart is feeling better and look; this is his first time out in the snow this year!

We had a great start on 'day 0' of our new phase of therapy and we are very thankful for how far we've come on our journey.

Here's an excerpt from my carepage musings:

As I think about all we have been through, the ups, the downs, the in betweens, it just at this very moment today, having gotten his results and knowing we are going to forge ahead tomorrow, occurred to me what a milestone we have crossed. It causes me to reflect back to the day we almost lost our dear son on the way to the hospital! I remember he started having trouble swallowing as we were driving him there and he couldn't breathe well. How God made it possible that we got there that very day we needed to be there. The doctor even said that. The feeling of complete loss of control as we were told he had a very rare disease with a very low chance for a cure. He was lying on the table and I remember realizing he was dying. How does one explain the feeling in the pit of your stomach when you can’t go backwards and have a ‘do-over’? Some of you DO know. One must be brave and yet, you just want to go outside and scream. Well, needless to say, we were praising God when a few hours later they established that it was actually the t-cell Lymphoblastic Lymphoma. Even so, he was still very ill and had to go to PICU to monitor his airway. (He had partially collapsed lungs) They said it had a high cure rate, but what does that mean to a parent who knows the stage/ advanced amount of disease and reads the numbers and that t-cell is harder to cure etc.? Then, you spend the first 5 or more weeks not knowing if your child is even responding to the chemo at all; if he is even going to live! Watching him so ill and getting that wrenching feeling in your gut. We are thankful for the peace God gave us then, the joy and hope we had when we were finally told that he had responded well with 90% of the cancer gone!! It was still not a full relief until after the second phase was over and a long wait to tell us that remission was finally a reality. That was 4 months later! Let me tell you, these guys give you no false hope. No encouraging words that it is all going to be OK. We got through it all by the grace of God, your prayers, love and friendship. It has been hard sometimes, I won’t lie to you. We have had moments of weakness. Also, we know that feeling in our gut isn’t going away forever….yet, our battle isn’t over and only God knows the outcome for sure, but we are so hopeful and thankful to be looking back on this huge mountain behind us.My mind is baffled when I think of how only God knows if there is a bad cell left in his little body. He knows if that last hospital stay, where he was brought to ‘the door’ and back was needed to make sure every little hidden cell was ‘caught’ and killed. I sometimes wonder; at what moment is the last one gone? Doesn’t that blow your mind? Obviously, we know that it is likely still there and he would relapse without another year and a half of MAINTENANCE therapy. The chemo is working at keeping his body ‘in proper condition’ as defined above, giving a continual dose to hopefully get any new bad cells that try to surface.To clarify for any of you who are new or forgot, Bryce is in remission, which means that none of the cells are visible on the scan. He is not yet CURED and will not be considered so until 5 years out of treatment.
Suddenly, here we are today and it all seems so fresh and new, knowing we are starting phase 5. Although we have been doing fine in our hermit like state while he recovered (he was unable to go very far due to low counts and increased risk for infection) now it is exciting to think of all we/ he can do again. He is anxious to get back to church and hang out more with his friends. It’s very exciting. Yes, looking back we are in awe of how we’ve been given strength through Christ in it all. He isn’t fake, He is real, a REAL HELP in time of need, no matter what the outcome of this trial in our lives. Now we begin this new part of our journey and we are looking forward to what's ahead with joyful anticipation. Thank you for letting me share a piece of our journey that I haven’t really shared with everyone. Thank you for continuing this journey with us.