Start of Phase II - Intensive Consolidation (Feb 11)

Hello everyone,

In today's update, the pictures I've attached should tell the story of what we did this past weekend. Yes, Dane was well enough and the entire family was able to make it down to Grand Forks for Ashley's mini-ringette tournament at Ralph Englestad Arena. The girls had a wonderful time - lots of swimming, socializing and oh yeah, a bit of skating at the two games! Dane sat on the bench during Sunday's game and was paid a surprise visit by the Asst Coach of the Fighting Sioux hockey team (shown in the picture with Dane in the Sioux coach's dressing room). Coincidentally the coach is named Dane as well so we've titled that photo "BIG Dane and little Dane". Big Dane took our Dane on a wonderful tour of the inner hollows of Englestad arena and the highlight was a trip to the players' very fancy dressing room. Dane was very impressed and has been talking about that part of the weekend a great deal. It was very uplifting to escape Winnipeg, even if it was for less than 36 hours. The whole family felt a sense of normalcy that has escaped us since early January and for short spurts, we almost forgot about Dane's leukemia. However, whenever we'd take a close look at those cheeks or order another large portion of food for him, we were reminded of the after effects of the steroids.

The past two days have been very busy and stressful. Dirk and I had a lengthy meeting with the oncology team yesterday morning to discuss Phase II - Consolidation. Given Dane's results have been very positive thus far, he was eligible to continue on in the clinical study. The purpose of Monday's meeting was for us to understand the implications of the study, specifically the two treatment alternatives. To make a long story short, if we had chosen to opt out of the study, Dane would have automatically received the standard arm of Consolidation treatment. This phase would have lasted 28 days and not involved the administration of that many different chemotherapy drugs. If we chose to continue with the study, the selection of Dane's treatment would be randomly made by a computer. There was a 50% chance he would receive the standard arm I just described above and a 50% chance he would receive the Intensive Consolidation (IC) treatment arm. The IC arm is 56 days and involves several more medicines, short hospital stays and clinic appointments. The IC arm is the standard treatment for children in a higher risk category than Dane and it has been proven very effective in curing these kids. The purpose of the study is to determine if the long-term survival of children in Dane's standard average category can be improved if the intensive regimen is followed.

After a lot of questions, discussion between Dirk and I, and consultation with a close family friend who is an oncologist (thank you Alan), we made the decision last night to keep Dane in the study. We signed all the consent forms and I delivered the news to the oncologist this afternoon. The computer did its thing and randomly assigned Dane to the IC arm. It's our understanding that of the few children in Manitoba who have been eligible to participate in this study, Dane is the first to be randomized to the IC arm.

In future updates I will provide more information about what it means exactly to be in the IC arm as it's fairly complicated. In the short term, it means that Dane will have to be hospitalized from tomorrow morning until Thursday afternoon. He will have a spinal tap first thing in the morning and then he will be admitted to the CK5 ward at HSC (the same ward he was on previously). He will then receive a few different chemotherapy medicines, one of which needs to be followed by close to 24 hours of IV fluids (hence why he needs to be hospitalized for a day). This same procedure will need to be repeated on Day 29 of this round as well.

Given we had no idea Dane might need to be hospitalized until yesterday morning and didn't receive confirmation until 1:00 pm today, our week's plans have been thrown into a bit of disarray. Dane was to have returned to school on Thursday, however that will be postponed until Friday when he attends for the Valentine's party. He will definitely go back more regularly next week, likely Tuesday afternoon and then again on Thursday (he has another spinal tap on Wednesday).

Both Dane and Ashley attended my fetal assessment appointment this morning. It was Ashley's first opportunity to see her baby sister "live" on the screen and we received some great 3-D images. From what I can tell, the newest Hantscher looks like she has Dane's full lips. The baby is doing very well and is close to two pounds. I'm just about finished month six and the premature labour concerns are not as great as they were a few weeks ago. That is definitely welcome news.

I will post an update in a few days once this hospital stay is finished. Please think of our Dane as he begins what will be an intense two months.

Regards ... Janie and Dirk