Apologies for the radio silence.
It's been a minute.
Here we are, and it's Annie. As most of you know, Blaise finished chemo last week. What an incredible achievement. Loved ones celebrated, congratulated us. I have to admit, I held my breath until Tuesday at about 1 pm. You see, chemo was finished, but we needed those scans to deposit. I say deposit- you wonder why...
Because now, we need to live between scans. Our beloved attending told me last week when I was having a moment of "how do I DO this?" that each clear scan is money in the bank. And we just had our first one. However, this scan trailed 5 days behind last chemo. So as people celebrated "last chemo" I, ever the oncology nurse, was superstitious to agree with that sentiment.
But it seems it was our last chemo... And, Blaise, Lucy, Andrew and myself could not be more relieved. Tidal wave of relief as some friends have described it to me. I agree. However, there is a harsh reality that we need to look for this disease every 3 months for the next year. After that, we space out to every 6 months for 4 years. Then--- every. year. FOR. EV. ER.
As an oncology nurse, I always appreciated this vigilance. I looked at a kid like Blaise, knew that he would be okay, and was "happy" for those parents that we would watch him so closely. As his Mother, I am finding that very hard. The moment I begin to exhale and put this nightmare behind my sweet boy, we need to gear up for more scans. Our team hears my anxiety, and they don't dispute it. They know this fear that is created is a real phenomenon. Unfortunately it is necessary right now.
Here is the fantastic news though- Blaise is defying the odds- his leg is healing rapidly, and I smugly enjoy watching every world-renown clinician scratch their heads when they encounter his range of motion for the first time. And we are defying these odds in a very non-traditional way. We do physical therapy ( "PT") on the beach, or in Target, or on our patio with his baby sister. His port comes out next week, so does his G Tube. Soon, this will all be a blur to him.
That blur is what I hope for most. My memories of my 3-4-5 "years" are just that. And I know that getting his port accessed and getting nightly feeds will be part of that blur, I hope that it is merely blurry.
So, we are doing so well, learning to walk again, and learning to live in the space between the scans. Andrew lives in that space much better than I. He trusts and he knows. Sometimes, my head runs away to places it should never go. However, Blaise's strength and improvement every day tells me that Andrew's trust is right. Andrew will be handling most of Blaise's PT needs as I plan to go back to work, and I am so excited for Blaise to get whipped into shape by the second coming of Coach Davis (maybe the third if we include the NEPA region).
THANK YOU to everyone. For everything. We could not have cared for Blaise without you. We are having a benefit October 22 at St. Kevin's in Springfield to help us finish strong. Our wedding band, Marquee, is playing, it is sure to be a good time. Hope to see you there- please contact beatitblaise@gmail.com for ticket or basket info- we are encouraging advance ticket sales.
