I am writing this on a Sunday, March 6th. I will say that this has been a strain on all of us. Trying to be patient with Noah and understanding why he has so many changes going on with his little body.
The medications have made his face swell, combine that with the loss of his hair, and the poor boy looks completely different than the beautiful young man of just 6 months ago. His taste has changed in ways that are hard to believe. For him, things taste different than they used to. He loves hot sauce and spicy foods, maybe in part because his taste buds are not registering things like they used to. His own breath and saliva make him gag sometimes. There are days when Gina will fix 6 different drinks for him and he will refuse to drink any of them. Getting him to take his medications is still a challenge and now keeping him hydrated has become an issue.
There are a few phrases we used from the beginning that has become more true than we could have ever imagined. “Noah’s battle with Leukemia” and “The Amazing Noah” There is no doubt that this is truly a battle and Noah has been simply amazing. We must continue to battle this every day and we have heard many stories from other parents about how their battle was unsuccessful. It hurts our hearts to hear these stories but the doctors have warned us that things could become serious in a very short time. Gina (Mom) has been fantastic at keeping an eye on The Amazing Noah. Temperature and blood pressure checks are normal rituals for us. We must continue to be vigilant with Noah.
This battle is far from over. Another issue we have been warned about is friends and family losing interest in this battle. It will continue for a very long time and many will not understand that a year from now our challenges will be just as real as they are today. Those of you who have purchased “Noah’s Heroes” wristbands please consider wearing them till Noah Rings the bell when he is considered Cancer Free. Just the thought of that day brings tears to my eyes. I promise we will show that event LIVE on Facebook or some platform.
Thank you all for your support!
