"Celebrate - with caution - Part II"

The quick Friday night "Celebrate - with caution - Part II" update ...

Dane's blood counts dropped a bit too much between Tuesday and today so a platelet and red blood cell transfusion was required to stabilize his blood situation. Both levels were on the bubble, however given he was bruising very easily and we were on the verge of a weekend, the doctor and I agreed some help with his blood was a good idea. As was the case in April, he had an allergic reaction to the platelets, specifically a stomach ache and hives. The doctor said some people react to the proteins in the platelets and now that he has reacted both times, it's pretty safe to say he's one of those people. We are hoping he will never need platelets again when he's in Maintenance so today may have been our last blood allergic reaction experience. It was uncomfortable for him but he managed pretty well with some benadryl and morphine. Before he received the platelets, his count was 12 and after it was 66 (well out of the "danger" zone). His hemoglobin was 75 prior to but we don't know what it was after the transfusion because a follow-up test wasn't done. However, his color is much better already and he has more spring in his step tonight than earlier today.

Transfusion days are VERY long - we were at the Cancer Clinic from 9:00 am until nearly 6:00 pm. A big thanks to Auntie Jodi who came at lunch to spring Ashley. I am confident she much preferred being spoiled for the afternoon vs. spending nine hours at the clinic. Dirk joined us in the late afternoon so I could stop running back and forth between Clare and Dane. Our not so little Clare gets spoiled on these days because there is no shortage of people interested in holding her. However, most of my helpers are usually gone by early afternoon when their appointments are finished. Now that she is a whopping 15 lbs, the help was great because I was aching a fair bit after a tough Dragon Boat practice last night. Apparently muscles that haven't been worked in a year don't respond too well to practicing our race start many, many times in one night.

Knock on wood for us now, because if Dane can stay "fever" free for the next week or so, we will make it through the entire "hard-core" phase without any rehospitalizations. The doctor had me a bit spooked today, because she mentioned "neutropenic (his level is now only .3), high temp and immediate trip to the ER/ward" a few too many times. I know she is just reinforcing the message, but I did tell her at one point not to jinx us. Yep, I was practicing my diplomacy skills again!

In my haste to finish the Part I entry yesterday, I forgot to mention a couple of celebratory moments from the past week and to post a cool photo taken last Thursday. The entire family had a chance to pose with the Stanley Cup, as Jason Botteril (his family lives in Wildwood Park), is the Asst GM of the Penguins. It was a highlight for all of us, but particularly Dane and Dirk. We made sure out of the numerous hats Dane owns, he donned his Pittsburgh cap that evening. Ashley and Dane each brought a friend to PL last weekend and many fun activities were enjoyed by all.

Take care everyone and enjoy your weekend. If you don't hear from me until mid next week, that's a good sign we are complication free.

Janie and Dirk

"Celebrate - with caution!"

We did it! After nearly eight months of finger pokes, IVs, spinal taps, leg injections, nasty steroids and many drugs at home, Dane is done the intense phase of his leukemia treatment. We said "goodbye, farewell, au revoir, adios and wiedersehen" (can't forget the German) to Delayed Intensification on Monday night after Dane's last diluted pill. As I've written before, he has done remarkably well since his diagnosis in early January and we are very relieved his journey has been relatively "complication free". It is very hard to watch other families walk a more difficult road though and our thoughts are with his cancer clinic friends who are fighting to get their neutrophils back to normal.

Reaching this milestone is definitely cause for celebration, however we have to exercise caution as Dane's various blood counts are "in the tank" right now. As was to be expected after so many drugs the past several weeks, basically everything is low - white cells, neutrophils, platelets, and hemoglobin. His platelets were only 21 on Tuesday and given his doctor thought they might still be dropping, we have to go back to the Clinic for another blood test and possible transfusion. We can tell his platelets are low because he has tiny bruises on his legs and arms and the dark circles under his eyes are indicative his hemoglobin is not stellar either. So we just wait until tomorrow's appointment for the results and in the meantime, we are doing "low key" activities to pass the time. A trip to PL this weekend is not likely in the cards given he is at increased risk for an infection. If Dane were to run any kind of a temp we would have to high-tail it back to Wpg and the dreaded ER.

Thanks to our many supporters for their generous donations to our "Dragon Boating for Dane" fundraising for the Canadian Cancer Society. I set an original goal of $1000 and as of yesterday, our combined online and cheque donations were over $1100! We still have a couple of weeks until the race weekend and not that I'm competitive (yeah right - that is quite the understatement) but we are #3 on the fundraising list and climbing. Dirk and I are aiming to raise as much as we can to help find cures for all cancers, particularly childhood cancers like leukemia. Having spent the past eight months at Cancer Care Manitoba, we are overwhelmed by the doctors, nurses, child-life specialists and programs that are in place to help young children like our Dane-OH fight this battle. If you are interested in pledging our cause, please refer to the instructions I posted in the August 17 update.

As I sign off for today I reflect that it has truly been a team effort to reach this significant milestone. All the support, assistance and caring thoughts we have received from all over Manitoba, Canada and the US has helped keep the "wind in our sails", especially during the really hard times. Our heartfelt appreciation to everyone who has been by our sides as we travel "Dane's Journey".

Take care - Janie and Dirk

"Takin' Care of Business"

A "short & sweet" entry before bed to take care of a few items ...

The Home Stretch

We survived another "monsoon" weekend and tomorrow is Day 1 of Dane's final week of DI. We are officially in the home stretch and counting down his treatments. It's been a long and intense eight months and a few week break before Maintenance starts will be a treat.

The Hantscher 5

As promised in last week's entry, I've posted a couple of new photos. We tested the self-timer feature on our new camera to snap the first shot and the other is Clare at three months.

Dragon Boating for Dane

Dirk and I will be paddling our hearts out the weekend of September 12 & 13 at the Manitoba Dragon Boat Festival. This is an annual event and a MAJOR fundraiser for the Canadian Cancer Society. We are part of the Paddlestar Galactica team and have created a personal fundraising page to collect online pledges. If you are interested, please follow these five easy steps ...

1. Click on the link below

2. Select Pledge a Participant

3. Search by our last name - Hantscher

4. Read our personal page

5. Follow the online pledge instructions

http://convio.cancer.ca/site/TR/Manitobathirdpartyevent/DRAGON_MB_Winnipeg_?px=2893401&p=personal&fr_id=4730

I will provide more race details (date, time and heats) as Sept 12 & 13 draws closer. We are hoping for a BIG turnout to watch our team race - if you have never been to the Forks that weekend, it's an amazing experience!!!

Have a good week everyone.

Take care ... Janie and Dirk

"Progress, Perseverance and Personal Victory"

This week's entry is the "three p's" and pretty good news all around. Here's the scoop ...

Progress ...

Yes, you guessed it - Dane's neutrophils were high enough on Tuesday to start the last two weeks of Delayed Intensification. We had a nine hour day at the Clinic but that was a better alternative to him being hospitalized overnight (this happened the other two times he received this particular medicine). He fared really well, but that's likely due to the fact all the rules get broken on days like Tuesday such as eating potato chips at 10:30 am and watching 4 hours of the Simpsons and SpongeBob Square Pants videos. We were back at Children's Hospital yesterday for a spinal tap procedure and at the clinic this morning and again tomorrow for leg needles. We get a three day reprieve from hospital visits and then he goes Tues - Fri next week for leg needles every day. He doesn't particularly like these (I can't imagine why), however the magic cream that freezes his leg really does the trick and he barely feels a thing. He's also taking pills at home for 14 days and will finish these August 24. That will mark the official end of DI and the intense phase of his treatment. It's onto Maintenance after that and what we hope will be a much more regular life for everyone.

Perseverance and Personal Victory ...

These two headings go hand-in-hand and the story is short and sweet. Upon our return from GF last weekend, Dane felt great and decided that he would attempt his four laps of the pool last Sunday when we went for a quick family swim. I swam beside him and he passed with flying colors. That meant he could go ANYWHERE in the pool on his own for the first time this summer. He was up for the challenge again on Monday and pulled it off. This was an extra special personal victory because all his friends were there and he got to be "normal" just like them. He spent two hours in the deep end swimming and diving in - it was a real treat to watch. Attempting the laps was truly a test of his perseverance and I told him that even if he never has the energy to do them again this summer, he can say "I did it - not just once, but twice!!!"

We head to the lake again tomorrow night and we are hoping the weekend forecast of rain is wrong. Ashley has been there since Wednesday hanging out with her Grandpa and we are thankful the two of them have enjoyed the great weather these past few days. Oh well, if it rains, a blueberry picking trip will be a good weekend activity.

I'll post some new photos of the kids next week. Dane and I took some great ones of Clare today to mark her hitting the three month milestone.

Take care everyone ... Janie and Dirk

"The Good, the Bad and the Ugly"

Good evening,

As the saying goes, shall we start with the good news or the bad news first? And let's not forget about the "ugly" news of the past couple of weeks as well. Given I have the power of the pen, I'll start with the ugly first and work my way to the good to end this entry on a positive note.

The Ugly ...

• It's just my opinion, but the end of July weather we experienced was downright ugly! August is starting off a tad more acceptable but several days of blue skies and decent temps will need to occur to get the weather off my list.
• Need I say more than "steroid emotional swings and crazy food cravings" to describe a few ugly moments the past couple of weeks. That said, Dane fared so much better this round than he did way back in January/February and the entire family is grateful this was the case.
• Dane's realization and verbalization that because of the leukemia, he can't do "stuff" - like swim four lengths of the pool and get up on waterskiis like his sister and cousin. We reassured him this is only temporary and for someone battling leukemia, he should be very proud of everything he has done these past months.

The Bad ...

• After dodging the hair loss bullet for seven months, we faced the inevitable the past week as Dane's hair started to really fall out. Every swim and hair brushing left it thinner and thinner and so yesterday we proactively shaved it very short. He and I held it together while he was in the hair dresser's chair, but both had meltdowns of varying degrees later in the day and this morning. Seeing Dane with very, very short and thin hair is a tough adjustment, but we are fortunate as this phase shouldn't last long. Come September and the start of long-term Maintenance it should grow back.
• "Murphy" was at work and as I intuitively suspected, his neutrophil count was not high enough for him to start Day 29 yesterday. He was soooo close - his count was .67 and it needed to be .75. So now we wait until next Tuesday to see if it rebounds enough to keep this train moving. Dirk and I were very disappointed, however Dane was pleased he didn't have to receive any meds for the next week.
• A few tough moments with Ashley when she verbalized how hard it is at times being the sibling of a newborn and a sick brother. She has done really well to hold it together and we are very proud of her.

The Good ...

• Ashley and Dane had a super and fun-filled August long weekend at PL. There were many great activities to fill the time, the sun shone very bright on Sunday and Dane's energy level rebounded after a difficult weekend at the end of July (he was very lethargic).
• The Children's Wish Foundation! Dane received an invite to meet a few NHL players in town this week for a charity golf tournament and hockey game. The entire family went to the Wish Foundation Office yesterday for some autographs and photos and much to our delight, were given "comp" tickets for the Summer Showdown game at MTS Centre tomorrow night. We are all going and taking Dane's best buddy from school. Before the game the kids get a chance to meet all the players at Autograph Alley and they will be armed with hockey paraphernalia for the many signatures they will be collecting.
• We received the doctor's ok for a little get-away so we are heading to Grand Forks on Friday/Saturday. The kids are looking forward to some time at the water park and I'm preparing to shop for our ever growing Clare (weighing in at just under 14 pounds).

Until my next entry after our appointment on Tuesday August 11, take care.

Janie and Dirk

"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