Celebration of a milestone birthday

Good evening,

Before we prepare to start another month of Dane's treatment, we celebrate a special birthday today - Dirk's 40th. Thank you for the many birthday wishes that have been passed along during the past week - they have lifted his spirits. I am personally hopeful the start of this new decade will mark a return to more positive news and outcomes for our family.

As I indicated in last Saturday's entry, Dane was scheduled to have a fairly light hospital schedule this week. He attended the Cancer Clinic on Tuesday for his regular exam and blood work and his progress continued to be "on track". His various blood levels dropped from the previous Thursday, however that was to be expected given the chemo affects the good cells and levels while it's hard at work destroying the leukemia cells. His hemoglobin (helps carry the oxygen to the rest of his body) was getting close to the number at which he was tranfused early in January so we are keeping a close eye on his energy level. He stayed home from school this afternoon because he was very tired and had a major nap for two hours. One minute he was immersed in watching women's curling (ok, so he had no choice) and the next minute he's sawing logs on the couch. He's been much more lively this evening so we will wait and see what tomorrow brings. Although we don't have a scheduled appointment, we can take him to the clinic for a finger poke blood test if we are concerned.

Dane had his third of four spinal taps for this round yesterday. He was a tad more stressed about the IV this week, largely due to not yet fully recovering from the abrupt finger poke he received last Thursday. However, once the IV was in, the rest of the visit to the Pediatric Day Unit at Children's Hospital went off without a hitch. He received three chemotherapy drugs at this appointment, one in his spine, another in his IV and the third via two injections in his upper leg muscles. Very fortunately for all three of us, the injections were done while he was sedated so he felt absolutely no pain. He has received all three of these drugs before without much adverse reaction so we are hopeful that will be the case again this month.

The Oncology Nurse and Hospital Teacher visited Oakenwald School today for a meeting with the staff and then presentations to both Dane and Ashley's classes. I attended the meeting and class visits and was very relieved at how both of our children reacted. The nurse brought "Ringo" the puppet - a green creature that has leukemia. The kids learned about cancer, the side effects of medications (eg: hair loss), and what an IV is for and how it's inserted into a vein. Dane's class had many questions, so many that we ran out of time and they wrote them down for Dane to bring to the Clinic next week. The kids have studied Terry Fox quite a bit the past couple of years and the highlight question was whether the nurse personally knew Terry Fox. Only from the mouth of a young child ...

My older brother Scott arrives from New Brunswick later tonight and we are all looking very forward to seeing him. He will be kept busy with visits, ringette games and birthday celebrations between tomorrow and Tuesday morning.

We are on day 16 of the first round of the Intensive Consolidation regimen and given it's a 28 day treatment cycle, we are over half way done. It is a HUGE relief to both Dirk and I that Dane has responded so well thus far. He continues to go to school most days, even if it's only for half of the day, and the social time with his friends seems to have lifted his spirits.

The baby check-up this week went well - the little and growing Hantscher is up to nearly 2.5 pounds. My doctor continues to keep a close eye on me, however I don't have to go back for a check-up until mid-March so that's a good sign. I will be 31 weeks by then and pretty much out of the pre-mature labour "danger" zone. Although I am anxious to not be pregnant any longer, I am finding the time is going by quite quickly. Seven weeks has passed since Dane's diagnosis and before we know it, March and hopefully some warmer weather, will be upon us. I am looking forward to some short little walks in the spring sunshine to lift my spirits.

As I close for tonight, I'd like to say thank you to Jessie's family for introducing themselves at the Clinic and for watching our blog (Jessie is Dane's age and was diagnosed almost two years ago). I'd also like to pass along our best thoughts to Hayden and his family for a speedy recovery and release from the hospital (Hayden is also Dane's age and was diagnosed in mid-November).

Take care everyone ... Janie and Dirk

Not too much news is good news

Good morning,

Between doctors appointments and back to school, it has been a busy week for the Hantschers. Fortunately thus far, the intensive treatment regime does not appear to be hitting Dane too hard. His various blood counts have remained within normal and acceptable ranges and as a result, he has not had to receive any blood products.

When the week began we thought we would only have to make two trips - Tuesday & Wednesday - to the hospital, however a treatment decision we made Tuesday morning required us to be there four days in a row, Tuesday - Friday. Dane had to have an IV put in on Tuesday to receive the first of four daily chemo injections, so we (he and I, but primarily Dane) made the decision to keep the IV in for the rest of the week. By doing so, he received all his chemo through the IV, as opposed to the Thursday and Friday treatments being injected under the skin in his leg. He really didn't like having the injections by the home care nurses the week before so it just made more sense to make daily trips to avoid the anxiety.

The treatments went in just fine, however Thursday's trip was made much more stressful than it needed to be because the technician that took Dane's blood via a finger poke disregarded the way he prepares himself for blood tests and various other pokes. He tells all the nurses he counts 1 - 2 - 3 (and sometimes it's a pretty slow count) and then they can put the needle in. All the individuals we've dealt with have been wonderful at respecting his approach, with the exception of the technician this past week. Admittedly he was tense about this finger poke, because the plan had been to draw the blood from his IV. However the blood just wouldn't come so the finger poke became necessary. In my opinion the technician interpreted his tension as a lack of cooperation and after she felt she'd given him a chance to do it his way, she did it her way - which was to jab his finger super quick and then squeeze it really hard to get the blood out quickly. The whole time this was happening Dane was absolutely wailing and because there are no doors in the hematology area, the entire waiting room heard this poor child screams. He and I were both distraught and after I calmed him down I took a deep breath and assertively questioned why she did it that way. I stressed the end result of doing it her way was a traumatized seven year old who has been poked and prodded countless times in the past six weeks. Once Dane and had a chance to talk about the situation further, I clearly understood he was more upset because she took away what little control he has over the leukemia that has completely changed his life. I have calmed down about the situation now, but trust me, I was livid and very upset on Thursday. Dirk and my mom had to hear me vent after it was all over.

On a more positive note, Dane went back to school three full afternoons (Tues - Thurs) this week - yeah! He seemed to really enjoy spending time with his classmates, however his teachers say he is very quiet. They are actually hoping he'll show his true personality soon and cause some "Dane" trouble one of these days. It's funny how we all miss annoying behaviours and wish for them when someone is sick. Assuming he continues to feel well next week, he will be in school quite regularly, including Thursday when the Cancer Nurse and Hospital Teacher visit the grade 2 & 3 classrooms to talk about leukemia.

Dane and Ashley had a treat yesterday afternoon, as their favorite baby sitter took them to see a movie and shopping at St. Vital mall. They both very much enjoyed the outing and a few hours on my own gave me a chance to get caught up on some errands. Assuming he is "co-operative", Dane will join his 7/8 hockey team at the practice tonight for team photos. It will be good for him to see all the players again - we've been told like his classmates they miss him too.

Have a good weekend everyone. I'll post a new update in a few days giving the news about next week. It should be quieter as we only have two scheduled visits to the hospital - Tuesday & Wednesday. We have a couple of highlights coming up though - Dirk's 40th b-day is Feb 26 and my brother is coming in for four days from New Brunswick. We can't wait!

Take care - Janie and Dirk

February 16, 2009

Good afternoon,

If we had any doubts Dane's blog is being read by many and checked frequently for updates, the phone calls and emails the past couple of days by people just "checking in" have confirmed the value of this written journal. We apologize that it has been several days since our last entry, however it's been a busy week and we've also been experiencing computer problems that prevented me from posting the entry as early as I had hoped. So, today's update will cover the period from last Wednesday (February 11) until today.

Dane had his spinal tap procedure first thing Wednesday morning and it went off without a hitch. He did not flinch when the IV was inserted into his hand and he woke up from the sedation much more cheerful than the previous week (thank goodness). After the procedure he was admitted to ward CK5 so a new chemo drug could be administered under the watchful eye of the doctors and nurses. He was given IV fluids for 18 hours following this drug, as without proper hydration, the medicine can affect his bladder and kidneys. He also received two additional new chemo drugs that day and he did not experience any significant side effects from any of the medications. We were released from the hospital by about noon on Thursday and spent the rest of the day recuperating from the complete lack of sleep from Wednesday night. Dane was up every two hours to go to the bathroom and I was "unpleasantly" reminded of what life will be like in a few short months with a newborn.

As we had planned, Dane returned to school on Friday afternoon and the timing could not have been better. He attended a wonderful musical assembly and then participated in his class Valentine's party. It was evident the children in his grade and older classes were very pleased to see him again. Although he was a bit anxious about returning, the 2.5 hours he spent there went very well. I was with him nearly the entire afternoon and that helped the transition. This week we plan for him to be at school tomorrow afternoon and Thursday. There was no school today because of Louis Riel Day, Wednesday he has another sedation procedure and Friday is an in-service.

Dirk and I "escaped" from the kids for a few hours on Friday night (courtesy of Ashley and Dane's favorite babysitter) and celebrated Valentine's Day early. It was good for both of us to get out for a bit and I particularly appreciated the change in scenery. The kids really enjoyed their time with Emily but by bedtime Dane was definitely pooped. It was a full day for everyone.

Ashley had a ringette game in Portage la Prairie on Saturday so that round-trip consumed much of our day. Dane ventured out for a bit with us in the afternoon to watch the girls in his class play and we understand there was a bit of excitement in the dressing room before the game and chants of "Dane is here to watch!" Although we didn't have any big plans for Saturday evening, our night was disrupted as I experienced mild contractions for a few hours that required a brief trip to Women's Hospital. The contractions stopped on their own and my check-up indicated they were a "false alarm" and everything is fine. This is coincidentally the same week in my pregnancy when I was hospitalized for similar complications with Dane so the irony of the timing was not lost on Dirk or I. I'm much more relaxed about the situation today and have been feeling great the past couple of days.

The steroids have definitely left Dane's system and between last Wednesday and Thursday, he went from eating everything in sight to barely wanting to eat. The doctors warned us this would be the case, as the cocktail of drugs he is on most often result in fatigue, headaches and lack of appetite. We are encouraging him to eat and drink whenever we can, however he really has lost his taste for food the past few days. In general he is more tired and doesn't have a lot of zip, but we are encouraging him to stay active. He attended Ashley's ringette practice yesterday and skated off and on for about 45 minutes. The Wii that the kids received for x-mas from Grandma and Grandpa is definitely getting a workout lately.

We are back at the Cancer Clinic tomorrow for blood work and chemotherapy. I don't anticipate he is going to need a transfusion at this stage, however his various blood levels are expected to take a hit during this intensive Consolidation phase. Wednesday he has a spinal tap and chemo and Thursday and Friday a nurse visits us at home to give him chemo injections.

During this journey Dane has made many statements worth recording, some of which have made us cry and others break out into laughter. Here are a couple of recent ones I thought you would find "entertaining" ...

- In the hospital Wednesday night when we were discussing his impending return to school and his request that I go along with him, Dane commented very cutely that "if you haven't noticed mom, I'm getting used to spending a lot of time with you." Dirk and I both started to laugh and I told him that yes, I had kind of noticed!

- When he was in the middle of his steroid "food" crazy mode, Dane told me his favorite store was Safeway. He couldn't wait to get there and pick out all the foods he wanted to eat. Yesterday we had to go there after ringette and when we pulled into the parking lot he said he wanted to stay in the car. We told him we couldn't leave him alone and he said "so you're going to punish me and MAKE me come in there with you!" My, what a difference a week makes.

As always, thank you for your continued comments, emails and phone calls. All four of us continue to have our moments, however thankfully most often we experience them at different times.

Take care - Janie and Dirk

Start of Phase II - Intensive Consolidation (Feb 11)

Hello everyone,

In today's update, the pictures I've attached should tell the story of what we did this past weekend. Yes, Dane was well enough and the entire family was able to make it down to Grand Forks for Ashley's mini-ringette tournament at Ralph Englestad Arena. The girls had a wonderful time - lots of swimming, socializing and oh yeah, a bit of skating at the two games! Dane sat on the bench during Sunday's game and was paid a surprise visit by the Asst Coach of the Fighting Sioux hockey team (shown in the picture with Dane in the Sioux coach's dressing room). Coincidentally the coach is named Dane as well so we've titled that photo "BIG Dane and little Dane". Big Dane took our Dane on a wonderful tour of the inner hollows of Englestad arena and the highlight was a trip to the players' very fancy dressing room. Dane was very impressed and has been talking about that part of the weekend a great deal. It was very uplifting to escape Winnipeg, even if it was for less than 36 hours. The whole family felt a sense of normalcy that has escaped us since early January and for short spurts, we almost forgot about Dane's leukemia. However, whenever we'd take a close look at those cheeks or order another large portion of food for him, we were reminded of the after effects of the steroids.

The past two days have been very busy and stressful. Dirk and I had a lengthy meeting with the oncology team yesterday morning to discuss Phase II - Consolidation. Given Dane's results have been very positive thus far, he was eligible to continue on in the clinical study. The purpose of Monday's meeting was for us to understand the implications of the study, specifically the two treatment alternatives. To make a long story short, if we had chosen to opt out of the study, Dane would have automatically received the standard arm of Consolidation treatment. This phase would have lasted 28 days and not involved the administration of that many different chemotherapy drugs. If we chose to continue with the study, the selection of Dane's treatment would be randomly made by a computer. There was a 50% chance he would receive the standard arm I just described above and a 50% chance he would receive the Intensive Consolidation (IC) treatment arm. The IC arm is 56 days and involves several more medicines, short hospital stays and clinic appointments. The IC arm is the standard treatment for children in a higher risk category than Dane and it has been proven very effective in curing these kids. The purpose of the study is to determine if the long-term survival of children in Dane's standard average category can be improved if the intensive regimen is followed.

After a lot of questions, discussion between Dirk and I, and consultation with a close family friend who is an oncologist (thank you Alan), we made the decision last night to keep Dane in the study. We signed all the consent forms and I delivered the news to the oncologist this afternoon. The computer did its thing and randomly assigned Dane to the IC arm. It's our understanding that of the few children in Manitoba who have been eligible to participate in this study, Dane is the first to be randomized to the IC arm.

In future updates I will provide more information about what it means exactly to be in the IC arm as it's fairly complicated. In the short term, it means that Dane will have to be hospitalized from tomorrow morning until Thursday afternoon. He will have a spinal tap first thing in the morning and then he will be admitted to the CK5 ward at HSC (the same ward he was on previously). He will then receive a few different chemotherapy medicines, one of which needs to be followed by close to 24 hours of IV fluids (hence why he needs to be hospitalized for a day). This same procedure will need to be repeated on Day 29 of this round as well.

Given we had no idea Dane might need to be hospitalized until yesterday morning and didn't receive confirmation until 1:00 pm today, our week's plans have been thrown into a bit of disarray. Dane was to have returned to school on Thursday, however that will be postponed until Friday when he attends for the Valentine's party. He will definitely go back more regularly next week, likely Tuesday afternoon and then again on Thursday (he has another spinal tap on Wednesday).

Both Dane and Ashley attended my fetal assessment appointment this morning. It was Ashley's first opportunity to see her baby sister "live" on the screen and we received some great 3-D images. From what I can tell, the newest Hantscher looks like she has Dane's full lips. The baby is doing very well and is close to two pounds. I'm just about finished month six and the premature labour concerns are not as great as they were a few weeks ago. That is definitely welcome news.

I will post an update in a few days once this hospital stay is finished. Please think of our Dane as he begins what will be an intense two months.

Regards ... Janie and Dirk

One LONG month behind us ...

Good evening,

It has been exactly one month since we received Dane's leukemia diagnosis and some days it feels like time is passing very quickly and other days it feels like it is standing still. Thank goodness we have my slowly expanding belly to remind us that we are indeed moving forward.

In my Wednesday blog entry I indicated we were waiting for a very important test result and we expected to hear from the oncology team today. Well, that call came at 4:30 and it was more great news. Dane's Minimal Residual Disease (MRD) result was negative and less than 0.1%. In this case, being "negative" is a "positive" result. Although MRD screening is still a relatively new prognostic tool for ALL, the information available on the internet indicates children with negative MRDs are less likely to relapse than children with positive MRDs. Given Dane's day 15 bone marrow was 0% and he is MRD negative, he is defined as a "standard risk average" case of ALL. As the oncology team puts it, he has the "garden variety" ALL and this is what they are used to treating, thus the likelihood of success is likely greater. The only other factor that would have bumped Dane into the "standard risk low" category is the genetics behind his cell mutation. Dane doesn't have the most favorable genetics (which somewhere in the neighborhood of 20% of kids have), however he has the most common genetic mutation. The doctors have told us (mainly me because I'm neurotic) that we should not panic at all that he isn't "standard risk low" so I'm trying very hard to follow their advice.

A significant upside of him being "standard risk average" versus "standard risk high" is his chemotherapy treatment regime should be less intense. This is great news, because as his family, it's very evident to us that the various drugs are highly affecting his system and personality. We not only need to win this battle, we also want to do it with the least amount of drugs possible. As I said in my Wednesday entry, now that his MRD result is known, the details of his treatment will be presented to us at our meeting with the oncology team on Monday morning.

As we head to bed this Friday evening, we have our fingers crossed he feels well enough tomorrow to travel to Grand Forks for Ashley's mini-ringette tournament. The change in scenery and some time away from "life with leukemia" will do us all a ton of good. We will only be gone until Sunday evening, but right now it feels like a trip to an exotic location.

Although I don't have many details yet, the Children's Wish Foundation called yesterday and they have selected Dane to be the "Children's Wish Child" for a RCMP hockey tournament in early March. As I receive more information I will pass it along. Apparently they picked him because they realized he was an avid hockey fan.

We are very relieved this first and critical month is behind us. Although we still have many years of treatment in front of us, I in particular was very fearful something terrible was going to happen to Dane this first month. In Cole's case the diagnosis went from bad to worse to horrific at subsequent appointments and I was so afraid we would be faced with that same situation again. However, this time the news has been progressively more positive with each test result and we are so relieved Dane is fighting this dreaded cancer and winning the battle.

Thank you to everyone for all their love, support and kind gestures as we travel Dane's journey.

Janie and Dirk

Check out those cheeks!

Hello everyone,

Today is a milestone - the end of the Induction phase of Dane's treatment. He has received 28 days of a combination of drugs and his final bone marrow test procedure was earlier this morning. The results of the procedure are being sent away to the Children's Oncology Group and our pediatric oncologist in Winnipeg expects to hear back by sometime this Friday. We were advised last Friday that after his day 15 bone marrow test, the liquid and bone sample both showed 0% leukemia cells. In lay person terms this means that he was in remission and no leukemia cells could be detected under a microscope. However, given it takes millions of cells for leukemia to be diagnosed, having 0% does not mean he is cured. Dane will still have many leukemia cells and the sample that was taken today is being tested for what is referred to as the Minimal Residual Disease (MRD) measurement. The MRD result will be much more indicative of the leukemia cells remaining in Dane's body, as this test measures the cells at a much more sensitive level than a microscope can. We will be anxiously awaiting this result, as a low MRD will mean he is even more of a Early Rapid Responder and this will bode well for his ongoing treatment. The doctors cannot predict the result, however like us they are very hopeful for a good outcome.

Phase II of his treatment is expected to begin next week and we have many appointments and meetings scheduled. We meet with the oncology team Monday to review the MRD results and discuss the particulars of the Consolidation Phase, expected to last one to two months. Dane's blood levels will be checked on Tuesday to determine if he is ready to start the next round. If his counts are good, he will have a spinal tap and chemo on Wednesday. If they are not good enough, Phase II will be postponed to the following week. He is returning to school part-time next week so we will be meeting with the hospital educators and Oakenwald staff on Thursday and then presentations are being made to Dane and Ashley's classes.

We will all be doing a very big happy dance this evening when Dane takes his final steroid dose for this round. We've had 28 days of twice daily steroids and as you can see from the picture I've included, he has ballooned in the past couple of weeks. He has gained nearly seven pounds and on a four foot frame that started out at 45 pounds, that is a lot of weight. He was absolutely miserable after his procedure this morning, likely due to being very hungry because he had to fast until 10:00 am today. He had his choice of lunch restaurants and not to any one's surprise, chose George's. He insisted today that he was going to eat a DOUBLE cheeseburger and french fries and remarkably he polished it off. The staff could not believe this little person ate so much and they said they were going to have to write it down in the record book. If that's not a claim to fame for Dane, I don't know what is! Personally I am looking forward to the return of our more "svelte" son, the chubby cheeks really change his appearance and he just doesn't look like Dane. However, the doctors said the extra pounds are a good thing, as his appetite will likely steadily decline in the next phase and we'll be begging him to eat. If only there was a happy medium.

Take care everyone and please keep everything crossed for a great MRD result. I will post another update on Friday once we hear the news.

Thank you ... Janie and Dirk