Tuesday, March 31, 2009

"Future Scientists?"











Hello everyone,

Dane continues to feel very well given all the drugs that he is receiving this phase and after an uneventful weekend health wise, we started week two today of the second round of the IC phase. Before arriving at the hospital we discussed his coping strategy for the IV and he pulled it off like a real pro. He had his sister to help him out, a few distraction toys and the camera to document the process of him getting an IV to provide a blood sample. After the IV was complete, we all went for a trip to the Hematology lab to see how his blood is analyzed and the results provided to the doctor within minutes. I documented the process in photos and have attached a couple for folks to see how calm he was and how keenly interested they both were in the lab - hence today's title "Future Scientists?" This IV will stay in for the rest of the week and we have to visit the clinic tomorrow through Friday for him to receive one of the chemo drugs. As was to be expected, some of his blood counts dropped quite a bit from last Tuesday to today (hemoglobin and platelets), however his neutrophils remained constant from last week. That was good news and the doctor gave us the "green light" to enjoy some activities (movies, golf dome, etc.) during spring break to ease the monotony of four visits to the clinic.

I had a "baby check-up" yesterday and all is fine, with the slight exception that I'm measuring small for my dates. This will come as no surprise to most people who have seen me recently, so just to make sure the baby is as big as they think she is, my OB is doing another fetal assessment this Saturday. We are not really worried about it and given the strength of her many kicks, punches and rolls, I think she is gaining weight just fine. I'm in week 33 now and with the start of April tomorrow, it does actually feel like there might be an end in sight. Ashley and Dane are really focused on her arrival and asking lots of baby questions - it's a very nice distraction from Dane's treatment.

As promised last week, I've also posted a couple of pictures of Dane posing with his San Jose hockey garb that he received from the tournament a couple of weeks ago. We think he looks great these days and are loving the return to his regular and adorable cheeks.

Take care everyone - Janie and Dirk

Wednesday, March 25, 2009

"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

Monday, March 23, 2009

Third time is a charm??

It's the end of the day, I'm tired and not feeling overly creative so trying to come up with an imaginative way to say "we try again tomorrow" is a bit of a challenge. "Third time is a charm" is the best I can think of and unlike my last entry, it contains no colorful language (imagine what this Wednesday's will be like if he is still not ready)!
Dane has felt absolutely awesome the past week and his energy level has been terrific. He attended school every day and for the first time since January, managed an entire day (Friday) including staying for a special pizza lunch. My cellphone was glued to me in the afternoon because I was anticipating a phone call to come and get him early, but to his credit, he stayed for both morning and afternoon and still had energy to burn when I picked him up at 3:45. I felt a bit "out of sorts" without him though as we have both become so accustomed to spending part of every day together. I tried to encourage a full day today however he said he was a bit tired this morning so I didn't push it.
In a previous entry a while ago, I mentioned Dane was asked to drop a ceremonial puck at a fundraising hockey tournament for the Children's Wish Foundation. Well that puck drop was last Friday evening at the Dakota Community Club and it was quite an exciting evening for him. The puck drop was pretty low-key and that suited him just fine, as he is definitely still shy in public situations (we know that's inherited from Dirk and not me). After the puck drop the organizers said some kind words about Dane and the charity and then presented him with a major haul. He received a signed and framed Joe Thornton picture, an official San Jose Sharks Joe Thornton jersey with Dane's name on the back, a couple of great San Jose caps and a Portable PlayStation. Dane was truly spoiled but much appreciative and we've told him there will be no more electronic devices purchased in this household for quite some time! I had intended to post a photo of him in his San Jose attire with this update, however our digital camera went on the fritz tonight so that plan fell through. If it can't be fixed, I guess we'll have to eat our words about no more electronic purchases because with a baby due soon, a digital camera is a must have item.
I'm psyching myself up now to get ready for what might be an overnight stay tomorrow night. My enthusiasm for packing for the third week in a row is not high, but it must be done. Soon I'll actually have to turn my mind to packing that other bag that needs to be ready just in case baby "H" decides to make her entry a bit early (not that I'm banking on that happening).
Have a good couple of days everyone and one way or the other, an update will be posted on Wednesday.

Take care - Janie and Dirk

Wednesday, March 18, 2009

Still not "#*@*!" ready ...

I decided I better wait until this morning to post this update, because if I'd written it last night, it would have taken every ounce of self-restraint to not use the real word versus "#*@*!". For all you American Idol fans out there, like Randy J., "I'm just keeping it real".
As you can guess from the title, Dane's neutrophil count was not high enough for him to start month two of IC yesterday. Instead of going up, his neutrophils went down marginally from last week (.57 last Tuesday and .48 yesterday). The doctor didn't seem concerned and reassured me a delay like this is completely normal. In the moment, it really doesn't matter what the doctor says - we just want to keep going to move Dane's treatment along. Delays are frustrating for the following reasons:
- We have absolutely no control or ability to plan life and preparing all of us (including Grandma and Grandpa) weekly for treatment and hospital stays that don't happen is difficult
- The three year treatment clock doesn't start ticking until Dane is done this phase and officially begins the next phase, so any delay now just adds to the total length of his treatment
- This phase and the next are both pretty heavy duty and the longer we are in the midst of them, the more likely it is that baby "H" is going to be born at a pretty hectic time
- Although we hate the chemo and drugs, knowing he is being treated gives us some sense of peace that he is winning this brutal battle
On the positive side, yesterday was a good day because ... my OB released me from "pre-mature labour pergatory"; the baby has had a growth spurt since the end of February and is now almost 3.5 pounds; Dane's hemoglobin count is 101 - the highest it's been since January and near normal; and Dane really enjoyed his time at the Cancer Clinic because he spent it playing with his two new friends - Hayden and Jessie. If only adults' minds were wired like kids and we could count a day spent at HSC playing Nintendo DS as a highlight!
Dane is off to school very soon and given I'm in a major need for a change of scenery (aka - get out of the house), I'm heading to the new Hydro building to visit a few folks and see where one day I will hopefully work again after this difficult journey is behind us.
Take care everyone - Janie and Dirk

Monday, March 16, 2009

Another try tomorrow ...

Well it's Monday morning at 9:30 and the house is very quiet - Dane is still sleeping and Ashley has gone to school. Dane has been feeling fantastic since the middle of last week ... he has lots of energy and enthusiasm and oh yes, still the attitude! I think he's catching up this morning plus he was awake in the middle of the night with leg cramps/growing pains that required some heat and TLC.
He set a school record last week, he attended every day of the week for half the day. This is the first time that has happened since he was diagnosed in early January. We also continue to do some homework on our own time when he feels up to it (that is when his mood and energy levels align). On Saturday he went to watch his 7/8 hockey team play in the year end tournament and he also managed a couple of play dates with his best buddy from school.
We now anxiously wait until tomorrow for his appointment at Cancer Clinic. Dane's blood levels will be checked again and assuming they have gone in the right direction, he will be hospitalized overnight to start the second month of the Intensive Consolidation phase. I was ok with the one week delay, however I am certainly hopeful he is good to go tomorrow so we can keep his treatment moving and pretty much on track. As was the case last week, I'll post an update on Wednesday letting everyone know the outcome.
I have another baby check-up tomorrow as well and given I haven't had any false alarms with contractions the past several weeks, I'm thinking I'll be in my OB's "good books". I'm now in week 31 and on the home stretch, however I'm not sleeping worth a darn and need to improve that situation or I'll be a complete zombie before the newest "H" arrives.
I've decided I'm looking at every week that we all survive intact as a success. It's Monday, a few rough days are behind us (due primarily to sibling scraps and a much more hormonal mother) and I'm thinking positive for Dane's results tomorrow.
Please continue to hold good thoughts for our special little guy.
Thank you - Janie and Dirk

Wednesday, March 11, 2009

"Not quite ready" ...

Good morning,
A quick update ...
As the doctor predicted, Dane's neutrophyl count was not quite high enough to start the next month of his consolidation treatment. He needed a count of .75 and his was .57 yesterday. His platelets were 490 (normal is 100 - 500), the highest they have been since he was diagnosed. We can visually tell they are good - his lips are super rosy these days! His hemoglobin was also up considerably from last week (a jump from 72 to 87) and it shows in his energy level and attitude. We had to have a serious "adjustment" yesterday, because this mom was at the end of her patience with his demands and not so diligent listening. He woke up much more pleasant this morning - a welcome change. We'll see how long it lasts because in a few minutes it is homework time.
We experienced a story of redemption yesterday, as much to Dane's dismay, the lab tech that botched his finger poke a few weeks ago was assigned to the clinic. She remembered us and Dane definitely remembered her. After a minute or so of panic and tears welling in his eyes, he calmed down for the blood collection. She recalled he counts to three before she starts and this time she waited - thank goodness! He only shed a couple of tears at the initial poke and then he was very composed. I breathed a huge sigh of relief when it was over.
Although we would have all liked to have kept going yesterday (Dane included), we were anticipating the result we received and thus were emotionally prepared. Although I don't like it
when he gets pokes or medicines, I seem to feel better when I know he's being treated and the leukemia cells destroyed. Having a week or two without any medicines now feels "abnormal" - it's amazing how quickly you adjust to a new norm. We know though that it's in his best interest to wait until the counts are high enough so we will look at this next week as a R&R week.
No other news to report. We now wait until next Tuesday for another blood test and very likely, the beginning of the next round. In the meantime he will be going to school daily and hopefully getting some exercise when the -30 temps disappear.
Take care ... Janie and Dirk

Monday, March 9, 2009

"Wait and see" ...

Hello everyone,
It's Monday morning and I figured I'd write a quick update while the house is relatively quiet (Ashley is at school and Dane is watching his morning TV). Since my last entry on Wednesday, Dane has been "plagued" by what the doctors think was the stomach flu. He started throwing up Thursday evening and did so off & on until Saturday afternoon. Fortunately he didn't have any temperature, so no need to head back to the hospital - that is a relief. The oncology staff told us to give him anti-nausea medication and that seemed to help a fair bit. Although his appetite isn't huge, he has been eating solid food since Saturday evening and keeping it down.
Although I don't have a recent picture to post at this time, he is looking much more like the regular Dane. The puffy, steroid-induced cheeks are gone for the time being and every week portions of the ten pounds he gained are disappearing. We have to coax him to eat now - a vast difference from his "roid rage" month.
Dane had a ton of energy yesterday and in fact at times was just downright annoying. He was bouncing around and pestering everyone in sight. He and Ashley enjoyed the fresh air for a good half hour Sunday afternoon and then at 7:30 last night, Dirk and I bartered with the kids - a 15 minute family walk in exchange for a few games of cards so they could proceed to kick my butt! His mood and health seem good this morning and he will be shipped off to school this afternoon assuming no more stomach issues.
We are in "wait and see" mode today as tomorrow he gets blood drawn in the morning to determine if he's ready to start the next month of the Intensive Consolidation. We are trying to prepare ourselves for either result, but it sure makes planning difficult. If he's good to go, he'll be hospitalized until Wednesday sometime and given fluids along with his chemo. I'm preparing myself for another night of basically no sleep if this happens, because he'll likely be up every two hours going to the bathroom. As I said a month ago, it's my preparation for the baby and many sleepless nights. If he's not ready, he'll be on hold until next Tuesday when another blood sample will be drawn and his platelets and neutrophyls checked. Although I'm not optimistic he'll be ready tomorrow, I am hopeful he is so we can keep "flying" through this phase. Week long delays now just add to the amount of time he is in the more intense phase before long-term maintenance can begin. So please keep your fingers crossed for good blood counts ...
Ashley is doing quite well these days, she's demonstrated great flexibility and she and Dane have definitely resumed their regular sibling relationship. She is quite preoccupied with her baby sister and hugs & kisses my stomach every chance she gets. I have to admit I'll be glad when the baby is born and she can smother her in person! Her ringette season came to an end yesterday when her team was eliminated from the playoffs. They were real troopers and gave it their all, but unfortunately were in a division that was just too tough for them. She is skipping soccer this year and instead is playing 3x3 spring ringette with many of the girls from her team. This will be good activity for her in May and June.
I've recovered from whatever was plaguing me last week and the cramps have subsided. I'm just about done seven months of my pregnancy so we are officially in the "home stretch". If anyone out there can do anything about this nasty weather I'd really appreciate it - we are still waiting for the nice spring temps so we can get out walking more.
Take care and I'll post an update later this week once we find out the blood results.
Thank you - Janie and Dirk

Wednesday, March 4, 2009

A "False Alarm"

Good evening,
Between Dirk's birthday, my brother's visit and me fighting off some kind of "bug" the past couple of days, there hasn't been much time for blog writing this week. Here is a recap of last Friday through today ...
Dane recovered from his post-procedure fatigue and was energetic enough to attend school last Friday afternoon. Although he still says some days that he doesn't want to go, once we pull up in front of the school he runs to the door and doesn't look back. When class ended that day, Dane and Ashley had a special visitor waiting for them at our house - their Uncle Scott! They quickly introduced him to the world of Wii, made him a character and proceeded to kick his butt in tennis! Friday evening we attended the 40th birthday party of our close friend Terry and the kids had a wonderful time playing Rock Band. The party goers were particularly encouraged to see Dane banging away on the drums and singing (albeit quietly) to "Run to the Hills" (the heavy metal genes are in his blood and it's safe to say they were not likely inherited from me)!
Ashley's ringette team started playoffs on Saturday and she had a big contingent out to watch, including her brother Dane. They were not victorious, however that was the expected outcome and she still has at least two more games this weekend. Saturday night was a real highlight for Dane and Dirk, as they attended the sell-out Moose game with Dane's 7/8 hockey team. He was VERY excited about this outing, especially the opportunity to hang out with his best friend Jack from school. The Moose were winners so that made the evening complete!
Sunday was "false alarm" day, as Dane was running a slight temperature for a few hours and this necessitated a trip to the Children's ER. The protocol for children with leukemia with expected low blood levels due to intense chemotherapy is an immediate blood test and administration of antibiotics. Although I anticipated there would be a chance he might have to be hospitalized even if his temp went down, I wasn't expecting hospitalization to be "automatic" as the ER doctor told me it likely would be. After the IV was put in, the blood taken and the antibiotics administered, Dane and I were preparing to be there for 48 hours. However, his blood results came back and because his levels were still "ok" that day and his temperature disappeared, we were allowed to leave. Between the nurse and I, we decided to leave his IV in so he could avoid any more "pokes" this week. Dane and I were taught how to "flush" the IV at home and I'm telling you, with that kid around, there is no way I can make a mistake - he's much too conscientious about these medical matters! Being granted a release was a welcome relief, as we were supposed to be celebrating Dirk's birthday with my family that evening. Dane and I were a tad late for the supper, although the turkey leftovers still tasted good a couple of hours later.
Dane felt well Monday so he went to school for the afternoon. Yesterday was his regular check-up at the Cancer Clinic and it turned a bit chaotic because I had to call Dirk away from work to attend with him as I was feeling awful and went to see my OB at Women's Hospital. I was having a lot of cramps that he couldn't pinpoint the cause of, however he determined it had nothing to do with the baby and sent me home with instructions to take tylenol and rest. I felt awful the rest of the day, however after a slow start today the pain has subsided and I'm feeling much better. Dane had his last spinal tap of the Intensive Consolidation (IC) phase today (that made four in a row) and it went very smoothly. We were in and out of HSC in two hours - record time for Dane having that procedure. He's been at school the past two afternoons as well and I'm hopeful we can go five-for-five this week - that too would be a record since his diagnosis.
We have no more scheduled check-ups until next Tuesday and the ultimate objective now is to keep his temperature low. Based upon yesterday's blood work results, he is "neutropenic" again and would definitely have to be admitted if his temp goes above 38 degrees. He officially concluded his chemo treatments for the first month of IC and now we wait until next Tuesday's blood work to see if his levels are high enough to jump right into the next month. This decision is based upon his platelet count (which was high enough yesterday to keep going) and his neutrophils (which were not high enough yesterday). Very few children are ready to start right away without a week or two in between for the counts to recover, so that is what we are anticipating will happen. However, we have to be prepared either way, because if he is ready to start again, he will be hospitalized next Tuesday/Wednesday for the administration of a chemo drug that is followed by IV fluids. We will keep you posted via the blog updates.
We continue to do "ok", however I would be lying if I didn't say out loud that some days are really, really hard. We are of course relieved and encouraged by how well Dane is doing thus far, however all of our lives are so very different and this is the way it will be for months and years to come. I yearn for life to be normal, to not worry so much about his every step and mood, and to not have the anxiety that comes with the third trimester of pregnancy. Although I know I can't change the situation we are in, some days getting really ticked off about it, even if just for a short while, gives me the strength I need to keep going.
Take care and thank you for your ongoing support - Janie and Dirk