Day 627


Benjamin’s bone marrow aspirate results are in. His marrow is 56% infected with Pre-B Cell Acute Lymphoblastic Leukemia. Of course this isn’t good news, but it is a bit of relief to know it’s a relapse, and not a different (and more difficult to treat) form of leukemia.

With this information, Dr. Grana presented the team’s proposed treatment plan to Dr. Tabori in Toronto. He advised moving forward with the reinduction as proposed. He takes no issue with any of the medicines on the protocol. The only medicine he might object to down the road is high dose Methotrexate. It seems almost impossible now not to connect Benjamin’s CMMRD with last year’s Methotrexate toxicity. But that correlation hasn’t been made with certainty.

Now that a plan is in place, all of the diagnostic tests have been scheduled. Today, Benji had an EKG and a heart ultrasound. Tomorrow morning, he will have a full body PET scan. It’ll be at a nearby facility, so we’ll be transported by ambulance, an opportunity for which Benji is quite excited. On Wednesday, he will have a lumbar puncture to be sure there is no leukemia in his central nervous system. While he is under sedation, we will go ahead with the colonoscopy and endoscopy he would have had next week anyway, as part of his CMMRD surveillance plan; if we wait until treatment begins, Benji’s immune system will be compromised. Bone marrow slides and colon tissue will be sent to Dr. Tabori in Toronto. When all of these results are in, Benjamin’s reinduction can finally begin.

Also this week we will begin the process of testing for a perfect match for Benjamin’s bone marrow transplant. The ideal and safest situation would be for one of us (Michael, Banyan or me) to be his donor. We start there. If one of us isn’t a perfect match, he has a 70% chance of finding a match outside of his immediate family. We will learn about those options next. We haven’t talked about any of this with Benjamin yet. Everything else is enough for now.

Kathy and Gana picked Banyan up from school today and took him to football practice so that Michael could come see us this afternoon. Benjamin was beside himself, so happy to see his daddy. Michael brought provisions from home and sweet letters from Benji’s classmates. We enjoyed the hours we had together, then Michael went home to be with Banyan, Benji took a nice bath, and we snuggled in with a movie.

Today was likely our easiest day for many to come. Tomorrow Benjamin will not be able to eat. That will be hard, and will continue through Wednesday until his procedures have ended. Then, this long new road of treatment begins. We are ready to walk it with him.

6 thoughts on “Day 627

  1. Sigh. Such difficult news. I don’t know what to say. Love and light are being flooded your way, sending so much strength to Benji to help him through his fasting.

  2. Laura: I hope you had a chance to read the article from the latest PEOPLE magazine I recently sent you about the teenager with no family who had a bone marrow transplant and is doing beautifully with his adopted family.

    Love, Sonia

  3. Agree isn’t good news but it could have been worse. Gilkey family will continue to fight with all the great strength & love they have. Love and Prayers.

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