"We have progress"

Good evening,

I promised a quick update Wednesday one way or the other and I have good news to report for all those sensitive eyes reading Dane's blog regularly - "we have progress". Yes, Dane's blood levels rebounded nicely between last week and yesterday so we started month two of his IC phase. It was almost one of those "good news, bad news" days though, as the doctor said "he's ready to start, however the ward he needs to be admitted to is extremely full and I'm not sure we can get him a bed." After some "bed shuffling" between various wards, there was room for he and I, however it was definitely more cramped than usual. We shared a room with a very nice 10 year old from the Pas who was waiting for eye retina surgery at 6:00 this morning. Dane really enjoyed having a roomie, as they played X-box for hours to pass the time. The boy's father was very friendly and we talked a bit about life in Northern Manitoba. For my Hydro colleagues, you will find it interesting that the dad is a member of OCN, a relative of Oscar Lathlin and a truck driver who apparently received a call about working at Wuskwatim while his son was hospitalized in Winnipeg the past sixteen days. Having met this family, Dirk and I talked about how much harder it would be if we were living this experience and not residents of Winnipeg. At least for us we can be at the hospital in 20 minutes and we don't suffer too many hardships along the way. Life in a hospital becomes a costly venture when you are there long-term, especially with the insane parking fees and the brutal hospital grub that necessitates bringing in your own meals.

As was the case with our last overnight stay, sleep was a rare commodity and even harder for me this time because we had roomies, I'm six weeks further along and my body pillow and I barely fit on the chair that doubles as a pull-out bed. We are all a tired group this evening so after a couple of baths, some hockey and an episode of American Idol, we will be calling it a night. All-in-all yesterday/today went well, however Dane got very worked up about both his finger poke and the IV he had inserted. He has regressed the past couple of weeks but after talking to the child-life specialist for a bit and reminding him the stress he creates for himself up-front is worse than the actual pokes, he has assured me "next week will be better". Ashley will get to come with us next week as well (given it's spring break), so I'm hoping it goes much smoother.

His IV stayed in so we can avoid leg needles and instead we go back to the Clinic tomorrow and Friday for quick appointments for him to receive one medicine. The cocktail of drugs he is back on for this month are the same ones that really did a number on his appetite in February, so we are expecting we will be catering to his diet requests and coaxing him to eat a fair bit the next while. His weight stayed the same (48 lbs) from last week to yesterday, so that's a plus. His hemoglobin was "sky high" (my words) yesterday, and for the first time since I would guess mid-December (even before we knew he was sick), it's at the low end of normal. We know this will drop in the next few weeks, but it's sure been nice seeing him with lots of energy and great coloring.

I've attached a picture I received from the organizers of the hockey tournament last weekend. I know I haven't posted a close-up picture in a while and I will do that with my next update (tonight's just not the night to fight that battle), however to all who know him, Dane really looks like Dane these days. To our surprise and relief, he has dodged the "hair loss" bullet thus far and his hair is actually looking really good these days. The doctor thinks he will still likely lose some or all of it in a couple of months when a new drug is introduced, however we've been very lucky he's managed through almost three months of treatment to keep it intact. If he does lose it sometime, the good news is it should be for a much shorter period of time.

That's all to report for tonight. I know many folks were pulling for us to keep going this week, so our thanks for the support (as always).

Take care - Janie and Dirk