"An A+ for Interim Maintenance"

Good afternoon,

Sorry for the delay in posting this update. Between tons of end of school activities, sleep deprivation (me, not Clare) and some technology issues (blogger was on the fritz for a day or so), I'm behind in my writing. Here is the scoop on the past week ...

An A+ for Interim Maintenance

As we hoped, Dane completed Interim Maintenance last Friday. He received his day 41 treatment and as has been the case this entire cycle, his counts were high again so his dosages were increased. He did amazing this past round - he didn't experience one delay, the side effects of the treatments were minimal, his white blood and neutrophil counts were good and high to help him fight off any lingering virus germs, he attended school pretty much full-time, and played all his soccer games (see action photos from last night please). He now has a well deserved two week break until the next round, Delayed Intensification.

Return of our carnivore??

Assuming good blood counts, Dane starts Delayed Intensification (DI) on July 7. Unfortunately, this is a pretty intense round, similar to what Dane experienced way back in January/February during the Induction phase. Yep, the steroids will be back in the mix, although at least this time it's one week on steroids, one week off and then another on. So, he will be on steriods two weeks out of three, during which time we are expecting a return of our carnivore. I will be stocking up on steak, ribs and hamburger for the lake to ensure we have the food he craves on-hand. I am very optimistic his mood swings won't be as severe as in January and am hopeful that being at Pickerel Lake will help with his temperment.

Another year in the books

Friday is the last day of school for Ashley and Dane and it's hard to believe another academic year is complete. Time has really gone by quickly and at this point, I think we are all ready for school to be finished. Deservedly so, the kids are in "party" mode and today Dane has a special treat - an after school pool party at his teacher's house. When September rolls around, Dane will start grade 3 and Ashley grade 4. Dane will also be in long-term Maintenance by then so that will make life much easier.

The start of summer

As I mentioned in my last update, we are heading to Pickerel Lake for our first trip of the season this coming Saturday. We are all looking very forward to being at our favorite place and not having any structure. The great weather lately has pushed the lake temp to the mid-high 70's and that bodes very well for swimming. We purchased water skis for the kids last weekend so they can get started on that activity right away. The kids' cousin, Marshall, arrives from New Brunswick on July 7 for a couple of weeks and we expect that like always, they will have a great time together. I'm in packing/shopping mode for the lake and will be glad when that job is done - it's a lot more complicated again with little Clare.

Our growing baby

Clare continues to pack on the weight and is now almost ten pounds. She is still not sleeping very well at night and I'm naively optimistic the fresh Pickerel Lake air will help with that (a woman can dream, can't she)?? She is six weeks old and definitely more of a little person - we get smiles now and when she is awake, she's much more content.

Given we are off to the lake in a couple of days and I will be without my computer, I won't be posting any more updates until July 8 or so. In the meantime, enjoy the summer weather and as always, thank you for continuing to stay tuned to Dane's journey.

Take care - Janie and Dirk

"Negative is positive"

Good morning,

I have a few quick moments to spare this morning as Ms. Clare appears to be napping. I say "appears" because she tricks us a lot these days - just when we think she is out she wakes up and 9/10 thinks it must be time to eat - AGAIN! She was up to nearly 8 1/2 pounds last Thurs at her one month check-up and I'm sure she is close to 9 lbs by today. I know that still sounds small to many of you who had ginormous babies, but when the pediatrician gives you the two thumbs up because she is gaining at 1.5 times the average rate, you know that doesn't bode well for mom's slumber. No photos today - I'm still waiting to get a good one of her and Ash & Dane.

In the case of Dane's H1N1 status, "negative is positive". We received word Friday afternoon that he does not have the virus - thank goodness! We can only hope he does not become one of the 50% of Manitobans that health officials expect will contract H1N1. Camp Arnes was cancelled outright due to the virus so our campers stayed home this weekend. They were a tiny bit disappointed but filled the weekend with many other fun activities (b-day parties, time with Grandma and golfing).

Dane seemed to have basically no negative reaction to his heavy-duty treatment last week so again that was very positive news. He is in his feeling well zone right now and has the week off until his day 41 treatment this Friday - the last of this cycle. If he continues to feel great, we have decided to pull the kids from school for the last day and head to Pickerel Lake for a ten day stint from June 27 - July 6. With this turn in the weather, it finally feels like lake season - now we just need the nasty little black flies to disappear.

As I predicted, the trickster is starting to stir after a short little nap so I better sign off. I'll post again after his Friday treatment.

Thanks for continuing to "stay tuned" to Dane's journey.

Janie and Dirk

"Where's the beef?"

I sense some of our faithful blog followers have been panicking a bit because it's been ten days since my last posting. No cause for alarm, I'm just not getting to the keyboard as much as I was pre-Clare's arrival. Before I get to this past week's happening, here's a little humour to start this entry ...

For all of you who remember 80's television, today's title should take you back to a very funny Wendy's commercial featuring a little old lady demanding big hamburgers. Fast forward 20+ years, substitute Dane for the old lady and juicy steak or ribs for the burger and presto - that's what it's like around our house at mealtime! And for goodness sake, he is not even back on those crazy steroids yet. That fun begins in early July. George's Burgers - are you ready for us???

Dane's appointments ...

We made an unscheduled trip to the Cancer Clinic last Tuesday because Dane still had a slight fever and cough on Monday night. His blood was checked and given his counts were still high and the virus was on its way out, there was no cause for alarm. We were back yesterday for his regular check-up and blood work. His neutrophils and platelets were on the high side still so he was at Children's Hospital today for a spinal tap (his first since March) and his IV doses of Vincristine and Methotrexate (an increased amount again). Today's appointment was day 31 of a 41 day medicine cycle, so that means we are in the home stretch of Interim Maintenance (IM). He goes back to the clinic June 19 and if his counts stay up, he will receive his last treatment for this round. He then has a couple of weeks without any medicines to round out IM. To quote his oncologist from yesterday's appointment, "he has done excellent" during IM. Although I don't have any empirical evidence, I don't think it's that common for kids' counts to stay high enough to receive increased meds every ten days like he has this round. All we can hope for is that the heavy duty drugs are kicking his cancer's butt!

Dane's charm ...

He reacquainted himself with the PDU nurses and docs today and they think our Dane is quite the charmer. The doctor who put him to sleep asked him if he is always as good as he was today and his quick and witty response was "I'm not near this good at home". Ain't that the truth! When he was asleep the doc then commented "this one is going to break some hearts when he's older". I said never mind when he's older, he already has quite the way with the gals! I'm convinced it's because he plays hard to get however in his case he's not putting on a show - that's his natural personality. Yikes, I am not looking forward to when he's a teenager. I told the nurses and docs we are stockpiling "Dane stories" and at this rate, there will be way too many to chose from at his wedding (assuming some lady decides he's worth her efforts 20+ years from now)!

Potential disappointment ...

This weekend is CancerCare Manitoba's 25th "Camping" weekend and Dane and Ashley are scheduled to attend Camp Arnes sans Dirk, Clare and I from Friday am til Sunday pm. However, the dang H1N1 virus may throw a wrench into the plans. If the World Health Organization changes the pandemic level to six (it's currently a five) then camp is cancelled. For our family this would be a disappointment but the better alternative than the other reason they can't possibly go to camp. Because of that fever and cough Dane had last week, he was swabbed today for ... yes you guessed it ... H1N1. We certainly don't think he has the virus but we won't know for sure until tomorrow when the lab results are back. So until then we wait and hold off on the camp packing. I'm telling ya, there is never a dull moment in this journey.

Everyone else around this joint ...

Ashley continues to shoot the lights out at ringette and is anxious for summer holidays to arrive (she doesn't seem fazed that we really haven't had spring yet). Dirk is plugging away at little projects when he can, but now that we are "outnumbered" his hands are often needed for Clare. As I type, he is pacing the yard with her trying to fend off a bout of evening colic. Yep, our little gal has developed quite the temperment in the evening, particularly between 7 - 10 pm. She will be one month tomorrow and I'll be able to post a new weight after her appointment tomorrow with the pediatrician. She is giving me a few more 2.5 to 3 hour stretches of sleep at night (yes, I said 2.5 to 3 and I think that's good) and we are on the verge of some real smiles. Although still sleep deprived, I'm doing pretty well and looking forward to the end of June and trips to Pickerel Lake.

Enjoy the photo I've included - it's of her at four weeks. When she is more cooperative at night we hope to get some new shots with Ash and Dane.

Take care - Janie and Dirk