"Summer Days"

The calendar says it's summer so who am I to disagree with mother nature, but I can sure say this isn't my idea of a balmy July in Winnipeg or at Pickerel Lake. The beauty of being a kid (no pun intended) is weather really doesn't matter when it comes to enjoying the outdoors and I'm grateful this is the case for Ashley and Dane. Even with Dane's schedule the past few weeks, they have packed in a lot of good times with family and friends at the cottage and hanging out at the local pool. So lest there was any worrying taking place, the reason for my two week writing hiatus is not because there have been any glitches in Dane's treatment, but rather due to being busy these past "summer days".

Here is a quick catch-up on Dane's progress ...

He had his day 8 and day 15 treatments last Tuesday and yesterday respectively and aside from being fatigued more than usual the day or so afterwards, he has sailed through the first three weeks. His first week on steroids was pretty uneventful, although we joke he is going to be the only 10 year old who needs his cholesterol checked due to his red meat intake. He ate an entire t-bone steak one night and couldn't stop bragging that he ate more than his dad! We found him to be more emotional and moody last week during his week off steroids but it was nothing that couldn't be handled. He started the roids again yesterday and will finish this round next Tuesday. That will be it until September when he begins his first of many, many months of "steroid boosts" (five days in a row).

Dane is treatment "free" for the next two weeks and the earliest date he will resume chemo is August 4. I say the earliest because August 4 is day 29 of this DI phase and he will not get meds that day unless his neutrophil count is more than .75 and his platelet count above 75. As I'm sure you faithful readers have figured out, knowing whether he is going to be ready is a crap shoot for everyone. In the past he was ready after a three week break, however his oncologist said he might recover quicker this time because his bone marrow is much healthier than it was several months ago. If his levels aren't high enough, we try again on August 11. It makes planning our time at the lake difficult, but unfortunately there is nothing we can do about it. We are looking forward to him finishing this round, as it will mark the end of the intense phase of treatment and allow him to start grade three in long-term maintenance.

I know I probably sound like a broken record, but man our Dane has guts. We know his little legs don't have a ton of strength these days due to the side effects of Vincristine (a chemo drug he has received a lot), however he still tried water-skiing twice last weekend. His mantra that he "was never going to try this year" softened to "ok, I'll try once" and then "ok, I'll try again". All in all, he attempted to get out of the water six times and four of those times he was up, however he didn't make it all that far before he went down. After the last attempt, he yelled at me a tad (one of those emotional outbursts I referred to earlier) and then told me "I'm never doing this again and I fell on purpose". Once he had calmed down he said his legs just aren't strong enough and his oncologist confirmed this is likely the case. She looked pretty impressed he attempted skiing at all - like I said, he's a tough little bugger. I've attached a photo of him just out of the water for you to enjoy.

Ashley and Dane had a great visit with their cousin Marshall the past two weeks, but sadly, their time at Pickerel Lake is done. Scott and Marshall fly home to New Brunswick tomorrow and there were many tears shed when all the good-byes were said earlier this week. They enjoyed many lake activities together, particularly tubing, as is evident from the the smiles in the attached picture.

Clare is doing well and still packing on the pounds at a good rate. She is just about 13 lbs now and has gained six pounds since birth, almost double her birth weight. I'm getting a bit more sleep these days and if my memory is correct, she is a bit more reliable when it comes to slumber land than our other two hooligans. I've attached a couple recent photos of our little gal - as you can see, she has reached the smiley stage now.

Until my next blog, take care and capitalize on our nice summer days when they arrive.

Janie and Dirk

"No Delays" ...

Good morning,

As we hoped would be the case, Dane's neutrophil and platelet counts were high enough on Tuesday for him to begin the next round of his leukemia treatment. So, we experienced "no delays" with the start of Delayed Intensification (DI) and we have our fingers crossed that is a sign this phase runs as smoothly as possible because it's an intense two months.

To kick-off DI, Dane and I were at Children's Hospital yesterday at 8:00 am for a spinal tap procedure. He received three different chemo drugs, one of which is new to his treatment. This particular drug is bright orange/red and one of the side effects is something only a juvenile boy would find "cool" - it turns your pee orange for the first 24 hours or so. And because not much shocks me these days, I was hardly even phased when I heard Dane cry out to Ashley late yesterday "come and look at my pee, it's orange!" A not so funny side effect of this drug is it's likely to cause Dane's hair to finally fall out. If that is going to happen, we will see signs in the next two to three weeks. I have been dreading this happening, however we have been very fortunate he has hung onto his locks (nasty cowlick and all) for the past six months.

Yesterday marked the "return of the roids". He is on them until next Tuesday and so far the food demands and intake are very manageable. I'm not delusional though - I'm sure this will change very soon. He's pretty lean these days so I wouldn't mind him packing on the pounds a bit, even if it is short lived.

Our 10 days at PL were a lot of fun and rain, cool lake temps and bugs didn't slow Ashley and Dane down. They swam, tubed, quadded, hot-tubbed and fished -just to name a few activities! My brother and family are here from NB and we are looking forward to some good times together in the next couple of weeks.

Our little Clare is not all that little anymore. She will be two months old on Saturday and now weighs 11 1/2 pounds. She has gained five pounds in eight weeks - the pediatrician will for sure be giving me the double thumbs-up at her check-up next Monday. I'll post some photos in my next update with her big bro & sis - our camera ran out of charge at PL so we are short on new ones right now. Clare is in my good books this morning - for the first time ever she slept a stretch longer than four or so hours. She was in slumberland from 11:00 pm until 4:30 am and when I woke at 4:25 I couldn't believe what time it was already. I'm hopeful there is more where that came from!

Although he may not physically look sick right now, there are daily reminders that for the time being, Dane is different than he was or than his peers. Some of those reminders are manageable and others more painful. Earlier this week I had a mom meltdown when he didn't have the stamina to swim the necessary lengths of the public pool, an activity that is required for him to go in the deep end. He did this without a hitch last year and so to watch him struggle for energy and then tell my almost eight year old he has to wear a life jacket in the shallow end was heartbreaking. It's times like those that his illness is much more obvious and painful.

As I close this blog entry, I reflect that it has been six months this week since Dane's diagnosis. There have been many lows and some highs during that time and we have managed to forge our way through this tough journey pretty decently. Dirk and I would give anything to erase the words "our son has cancer" from our vocabulary as I'm sure all the other families that we meet at the clinic wish for as well. We remain immensely proud of Dane's resilience, determination and spirit - he truly is one strong kid and a real fighter.

Until my next entry, take care - Janie and Dirk