Another day of nothing but 2.75 hr blocks of antibiotics and waiting. We were told this morning that they were transferring us back to the home hospital today. So we packed up all our stuff and got organized and hung out watching TV and listening to audio books. Not long after they came back to say no ambulance could be had until tomorrow at lunchtime so we needed to spend another night here. Honestly, I don’t mind because it truly doesn’t make much of a difference which four walls were locked into. But it was hard on Lochlan’s little spirit.
The overarching feel of the day tended to be “glum”. Both he and I were sad together. We had a few good cries about our life and this journey we’re on together. Lochlan told me he is just so tired of it all, already, and it’s only the beginning. He told me that he couldn’t do it without me. He told me he promised he would never let go if I promised to always be there and hold his hand back. And he told me that he will love me forever, “even when I’m a teenager, Mom.”
He wanted to know more about his treatment plan and path today, with no beating around the bush. So I laid it out for him. We have 5 weeks more of Consolidation which is basically a repeat of the last month of treatment. Then he gets a Bone Marrow aspirate to see if he has any residual disease. If he doesn’t (which we hope and pray is the case), then we move forward with a month of immunotherapy here in Halifax, followed by 8 weeks of Interm Maintenance, followed by another month of immunotherapy, followed by two rounds of Delayed Intensification (which is a repeat of the first two months of treatment, twice), then finally maintenance for two years. If however, his bone marrow aspirate comes back with residual disease then we will more than likely have to head to Toronto for car-t cell therapy + or a bone marrow transplant. So, there really is a lot riding on the next 5 weeks of treatment to get that Bone Marrow aspirate to be disease free.
Laying it all out there for him was not something I planned to do but because he asked I told him. It seems so long but we’ll face it one step at a time.
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