We've had a big change: Toby is done with treatment! He was originally scheduled to be done on November 1st, 2021 so while this was a surprise, we're very excited! I'll do my best to explain the change in this post for those interested. If you want to just see the end of treatment summary video you can view it here: Toby's End of Treatment Video

There are two main types of Acute Lymphoblastic Leukemia: B-cell and T-cell. B-cell is much more common, with T-cell accounting for only around 20% of overall ALL diagnoses. Most t-cell diagnoses are in older kids and adults. For whatever reason, Toby ended up with T-cell. For all types, boys have a slightly higher relapse rate than girls. Nobody knows why yet. To try to even out this discrepancy, decades ago they started treating boys for a year longer than girls. About 3 1/2 years instead of 2 1/2. However, survival studies are now showing that that extra year had no impact on boys' higher instances of relapse rates. Because of this, the Children's Oncology Group (COG) dropped the additional year for B-cell boys about a year ago and now B-cell boys and girls are treated for the same length of time. However, they've been hesitant to do the same for T-cell for a few reasons, the main one being that T-cell is a harder cancer to treat in the first place and already has higher relapse rates, plus relapsed T-cell leukemia is aggressive and hard to treat, the only option often being a brutal bone marrow transplant and even for that the first challenge is getting the patient back into remission.

However, some hospitals have decided to start making that change and dropping the extra year for T-cell because, although we want to do whatever we can to prevent relapse, if the extra year of chemo isn't impacting that, then it's just an extra year of potential side effects and complications. I've been asking about the possibility of this changing for us for awhile, but they weren't yet ready to make such a big change.

After hearing of a few prominent hospitals who follow the COG protocols that Toby is on making the change, I asked about it again at Toby's appointment in January, along with some other general question about his treatment and some side effects we were dealing with. The nurse practitioner answered my questions and after we left she ended up setting up a meeting with the top T-cell doctors at our hospital to discuss Toby's case specifically. I had no idea this meeting was happening until the next week when she called me to tell me about it. She told us that they are pleased with Toby's overall positive response to treatment, plus he got the most recent advancement drugs which have made a big impact on preventing relapse (Nelarabine and Capizzi Methotrexate - added to the protocol just months before he got sick). She said they are not yet making an official change and want to make sure we understand all of the risks and benefits, but ultimately, they were okay with ending his treatment early if we wanted to.

Wow. I wasn't expecting that phone call at all. Though I'd been wanting and asking for exactly that for months, it was an entirely different scenario having it in our hands and our call.  Talk about pressure!

Josiah and I spent a very emotional three weeks discussing it with each other, emailing back and forth with the doctors, pouring over studies and medical journals, and lots and lots of prayer and tears.  Ultimately, we were at peace and told the doctors we were ready for his next appointment to be his last. They were supportive and so great at helping us iron out all of the logistics.

February 9th, 2021. What a day. Toby had his last chemo infusions, and his last spinal tap. The doctors and nurses all came in to visit and sign his poster. He was given a trophy and medals to bring home to his siblings.

A few weeks later, on March 2nd, his port was removed. That went perfectly smoothly and the staff loved the Captain America uniform he showed up in.

Now he's DONE! What a surreal feeling. I'm not sure it's sunk in yet, and while there are still a ton of emotions, we are so relieved. It seemed so overwhelmingly long in the beginning when our just over two year old was looking at 3 1/2 long years of treatment, but here we are. June 22, 2018 - February 9th, 2021. 2 years and 8 months.

Thank you all, for all you've done to help us during the hardest years of our lives. Thank you God for carrying us through.