January 31, 2009

Good afternoon,

I had intended to post an update sometime yesterday, however it was "one of those days" and my writing juices were not flowing. Dane had his check-up and fourth chemotherapy treatment at the Cancer Clinic yesterday morning. From a physical standpoint, the appointment went well. His various blood levels continue to improve, particularly his platelet count (one of the main factors in deciding whether he needs a transfusion). He has lovely red lips these days and that's a great indicator his counts have returned to much more normal levels. The chemo treatment was his final one for the 28 day Induction phase and thus far he has reacted very well to the medicines he is receiving. After nearly four weeks he has yet to lose any of his hair so we are in "wait & see" mode. Thanks to a good friend of ours in the sporting goods business, he has a stash of new caps and toques waiting if/when that time comes.

The main reason I wasn't in a writing mood was because it was a very tough mental/emotional day. Dane was inwardly very nervous and afraid of having an IV done at Cancer Clinic (this was to be his first there as all the others have been done at Children's Hospital). His natural reaction was to get very somber and angry at both of us, but particularly me. He was also dealing with some jealousy issues from Ashley's birthday celebration and in so many words told me that "we love Ashley more, have taken care of her better all her life and that's why he has leukemia." That discussion occurred at 9:00 am and most of the day followed that same path. Although we all know those comments are the steroids talking, in the moment it doesn't dull the pain and angst that Dirk and I feel. The Clinic staff were great and tried to talk him through his anxiety, but he was having no part of it. If you can form this mental image, imagine him sitting in a hospital treatment chair for 30 minutes with his coat on upside down over his head and you will have the picture. The nurses made some good jokes about the situation and told him they would have to stethoscope his butt! After the magic cream did its thing, the IV was inserted and he didn't even flinch. Once he was all done he even took the IV out of his hand himself, which sounds like quite a rarity for a child of his age.

By mid-day this moody pregnant mom had all she could take and retreated for a rest. If I hadn't, he and I were going to have a "show-down" that likely wouldn't have been pretty. When I got up he was in a much better mood and by later last night was very willing to discuss what had happened earlier in the day and how taking his anger out on me is just too hard for everyone. Today has been a great day thus far. He watched Ashley's ringette game for the first time in a month and cheered her team onto a solid 5-5 tie. Her party is tonight (a sleepover at Canad Inns) and he is well enough to join her and her pals for a swim and dinner. We really need days like today because if they were all like yesterday, we truly would not survive.

He has his final check-up and bone marrow/spinal tap of the Induction phase next Tuesday/Wednesday. He goes off the steroids cold turkey on Wednesday night (yeah) and the doctor said his mood and appetite should return to a more normal state within a few days. I will post a new picture in the next update and for those who haven't seen him in a while, check out the cheeks! He has gained nearly five pounds in a couple of weeks and that's great, because his appetite will likely decrease significantly during the next treatment phase.

Our heartfelt thanks to everyone who posted comments, sent emails, dropped by and left messages wishing Ashley a happy 9th birthday on Thursday. All the attention made her feel very special.

Speaking of special, my best friend Jodi and her 10 year old son Noah have entered the "Cops for Cancer" half marathon on May 3. They are running in Dane's honor and have named the team "Dashing for Dane". She asked that I let the blog followers know they are doing this and I am providing the link below if you are interested in pledging them. As a family we are very grateful and touched they will be running that day for our special son and you can bet rain or shine we'll be on the route somewhere cheering them on. The link is ...

https://www.runningroom.com/dashboard/donations/index.php?raceId=4133&eventId=14337&memberId=AGgLNQdmVzRcNlZm&item=8&guest=1

As always, thanks for your ongoing support. Please continue to hold good thoughts ... Dane's final bone marrow this Wednesday is another important test in his journey.

Regards ... Janie and Dirk

A quiet few days ...

Hello,

I just realized it has been five days since I posted our last update. My lack of writing is not an indication Dane is experiencing any complications, but rather just the opposite, as we haven't really had any new medical information to report since the great news we posted last Thursday.

As has been the case the past couple of weeks, Dane was fairly mellow on Friday and Saturday. This is likely due to the after effects of the chemotherapy treatment he received last Thursday. By Sunday he had a bit more energy, however that day he also came down with the beginnings of a cold. We've been watching the cold closely to ensure it doesn't turn into anything worse and today we went for a quick and unscheduled check-up at the Cancer Clinic just to make sure he was okay. He checked out just fine and there is no indication the cold is causing him any issues at this time. The doctor and nurse thought he looked great again today so they didn't bother with any blood work.

He has no procedures (bone marrow or spinal tap) this week so we are "free" from trips to the Pediatric Day Unit at Children's Hospital. We go back to the Cancer Clinic on Friday for a check-up, blood work and his final chemotherapy treatment of the induction phase. He will need an IV at this visit so we'll be reminding him that it really doesn't hurt much with the special freezing cream. An option for Dane in the future is to have what's called a "port" inserted into a vein that flows from his heart. If we go this route, he wouldn't require any more IVs or pokes, as all blood would be drawn from the port and all medicine inserted into the port. We've briefly discussed this option with Dane and thus far, he's not keen on having a port inserted. To do so would require surgery and he said he'd prefer to keep having IVs, as long as he can have the "magic cream".

Before Dane's check-up at the Clinic he got a special treat - the opportunity to see his unborn baby sister in utero at the Fetal Assessment department. Both Ashley and Dane have seen many still pictures of their little sister, however this was the first time either one attended an appointment with me. He thought this was very cool and his sister was very cooperative - she showed off her moves during the ultrasound. She is growing well and at 5.5 months is about 1.5 pounds. My OB is still keeping a very close eye on me under these stressful circumstances and is specifically watching for premature labour symptoms that I experienced with Dane. He (my doctor) was pleased with my check-up today and I go back again in two weeks.

Our family mood was definitely low on the weekend and yesterday, as we were supposed to be in Orlando this week for our big Disney trip. However, I didn't feel quite as bad when I checked the weather forecast and saw it's supposed to rain there later this week. The weekends are definitely proving to be harder than the weekdays and that's likely because we don't have as much structure and the days can get long. Dane continues to be a puzzle lunatic and that's great because it puts in lots of time.

We will post another update Friday after Dane's check-up. In the meantime, if you are inclined, I know there is a girl in this house who is celebrating her 9th birthday this Thursday that would love to receive your special wishes.

Thanks and take care ... Janie and Dirk

Great News!!!

Hello everyone,

There must have been a lot of people holding good thoughts for Dane today, because it has been a great day! Dane had his Day 15 bone marrow test this morning (his third week in a row for this test) and it went very smoothly. He remained very calm when the IV was put in, even though it had to be done twice (his vein flattened the first time). He told the nurses they could do it when HE was ready and only after HE had counted to three. Now that he is feeling better, the doctors and nurses are starting to see the real Dane. For those of you who know him well, you will realize that is the Dane with some attitude and edge! As has been the case the past two procedures, he handled the sedation very well again today.

The high point of Dane's day was picking where he got to go for lunch after having fasted since 8:30 pm last night. All you south enders will appreciate his choice - George's Burgers. He polished off an entire adult size cheeseburger, french fries and a banana milkshake! This was only an hour or so after having three pieces of toast in the hospital. My stomach just ached watching him eat that meal.

The high point of our day was receiving a call from the Oncology nurse advising that Dane's Day 15 bone marrow count was 0.3% (it was 8% last Thursday) and after only two weeks, he is in REMISSION!!! This is an outstanding result, as anything less than 5% at this time is considered remission and his liquid bone marrow is almost zero. Given this result, he is classified as an "Early Rapid Responder" (ERR). His treatment for the next several months will be based upon being an ERR and the long and short is ERR's generally have a higher cure rate. So the combination of his low white count at diagnosis, his age (being under 10) and his status as an ERR all bodes very well for a successful outcome. It doesn't shorten his treatment, he will still need three years of cancer therapy, however we are hopeful it will be a less intensive regimen with a reduced risk of relapse along the way.

We will hope for an uneventful next week so he can stay away from the hospital until his Cancer Clinic appt next Friday. I will continue to "home school" him for the next couple of weeks to do our best to avoid him picking up any colds/flus (the school is full of them right now).

Our Dane is feisty and a fighter. For being just seven, he has shown great maturity and he and Ashley understand the significance of today's news. We had a great big family hug, shed a few happy tears and then smiled more than we have in a few weeks.

Thanks for the continued support - Janie and Dirk

January 21, 2009

I had intended to write an update yesterday, however I felt pretty rough after we returned from the hospital and rested for most of the day. Today's update captures the details from Dane's Tuesday appointment at Cancer Clinic and our first day at home without dad (he returned to work today).

Given Dane's hemoglobin count last Thursday was only 78 (normal for his age is 115 - 155) and his platelet count was around 130 (normal is 100 - 500), we and the doctors/nurses expected he would need a second blood transfusion yesterday. He didn't have a lot of "zip" last Friday, however he picked up steam as the weekend progressed (as was evidenced by the pictures of him playing in the snow with Ashley and skating on our rink). His skin color, particularly his lips, was very good when we arrived at the Cancer Clinic and the doctor once again said he looked "great". Based upon his appearance and check-up, his pediatric oncologist didn't think a transfusion would be required, however he needed to get his finger poked and have a complete blood chemistry done to make sure. After about an hour wait, the doctor confirmed no transfusion was required as his hemoglobin had risen by 10 to 88 and his platelet count had doubled to 260 (well within the normal range). This was very good news as it indicates his bone marrow is functioning much better than it was two weeks ago and making more "good" cells than "bad" cells at this time. So to our pleasant surprise, our appointment only lasted two hours versus the six or seven we thought it might take. We were home in time for lunch and Dane spent the afternoon hanging out with dad, playing games and engaging in a good game of "mini-sticks" (above photo). We even managed to convince Dane a short walk to pick up Ashley from school would be good for him and he obliged without too much complaining. To keep his mind occupied, he and I started a 500 piece adult puzzle Monday night that I expected would take him days to complete, however between Dirk, Ashley, he and I, it was done by 9:00 pm last night! His grandpa is a puzzle man so we are looking for him to send some more challenging ones our way.

Dane's appetite the past few days has been voracious (to put it mildly) and the food cravings have definitely surfaced. Everything he wants lately has cheese in it - cheese sticks/slices, grilled cheese, Cheese Whiz on toast, pizza, etc. Today it seemed like I was in the kitchen half the day feeding him ... I can't imagine what it will be like if he's still this hungry in a few months when I've got a new baby to feed! His cheeks and tummy are "filling out", although he hasn't gained much weight yet. The few pounds he went up last week seemed to be likely more attributable to all the fluids, as he was down to 46.5 lbs yesterday (he was 45 when admitted two weeks ago). If he keeps eating like he is though, the numbers on the scale will be going up, up and up!

Just as the steroids have affected his appetite, today they really affected his mood. We were having a peaceful morning and then around 10:45 he became very agitated and emotional. When he is in this "state", it's very difficult as he basically hates everything and everyone - particularly his mom who is closest to him. After about an hour he calmed down and then in a very mature way told me how sorry he was for making so many hurtful comments. I explained that it is the steroids and not him and that I understand and forgive him. We shared a big and tender hug and had a good afternoon, complete with a solid hour and a half of homework. The emotional wear-and-tear of this outburst really affected Ashley and my mom as well, as they arrived home for lunch as I was at my breaking point. Although I'm realistic there will be more days like this, I'm really hoping there aren't too many - I'm not sure my mom heart can take it.

We are back to Children's Hospital for his third bone marrow test tomorrow morning as well as his chemotherapy treatment. The cancer nurse will also be taking a blood sample to analyze how well Dane's liver might react to a medicine that will likely be used in the next phase of his treatment. The early indication is he might have a genetic predisposition that will make this medicine harder for him to take, however the doctors won't know this until the blood results come back.

We continue to hear from many people that our blog updates are serving their purpose - keeping lots of folks updated all at once. We are thankful this tool exists and are finding it very therapeutic to tell our family's story in this way.

Thanks for your continued positive thoughts. Please "tap" into them for us tomorrow - the results of Dane's day 15 bone marrow are very important.

Warmly, Janie and Dirk

He Shoots, He Scores!

Good morning,

For all you hockey fans out there, we thought you would enjoy these pictures of Dane taken yesterday afternoon on our backyard rink. After some negotiation about how long he had to skate for, Dane "reluctantly" agreed to lace up his blades and head out for some afternoon fresh air. I was at ringette with Ashley so I missed his skating time, however Dirk said he really enjoyed himself and skated for close to half an hour. When I got home he rushed to tell me about how we was consistently raising the puck over the net and into the snowbank! To his Giants teammates, you can see he is wearing his team jersey.

Today is a quiet day as we have no doctor's appointments. Ashley has picked up some kind of a "bug" so she is home from school this morning. We are keeping as much distance between them as is possible when they live in the same house. Dane really wants Ashley around these days as well, so I think he's secretly glad she is under the weather. I hope she recuperates soon for everyone's sake, as she has a birthday celebration to attend and is supposed to be coming to the Cancer Clinic with us tomorrow for Dane's check-up.

We will post a more thorough update after Tuesday's appointment. As I said in Saturday's entry, this past weekend was difficult. As a parent of a child with ALL, it's particularly heart-wrenching knowing Dane can't participate in all the activities that he enjoys so much. What gets us through is the hope and expectation this will be short lived and before you know it he'll be back on the rink racing his mom, dad and sister and proudly saying "I'm faster than all of you!"

Janie and Dirk

Dane's Journey

Today started off pretty tough for Dirk and I. It's hard to pinpoint exactly why that is, however for me I think it's because I woke up realizing it was Saturday and Dane should have been at his hockey practice. The fact that our superstar skater is done for the season is tough to handle, especially because we know how much he loves hockey. After a few hours of slow moving, we got into our groove and the afternoon has been more upbeat.

I had not intended to post a blog today as we have no medical news to report but that all changed when the kids said they wanted to go outside and play for a while in the "balmy" temperatures. Dane and Ashley bundled up and as you can see from the photos I've included, took wonderful advantage of the fresh snow. I have to say, I NEVER thought I'd take such pleasure in watching my 7 & 8 year olds jump off the swing set into the snow, pull one another on the toboggan or make snow angels. They had a great time outdoors and Dane looks awesome today. The fresh air and exercise did him a world of good - it's been almost two weeks since he's been able to partake in Winnipeg winter activities. Dirk flooded our backdoor rink yesterday so I have my fingers crossed he and Dane will get out for a skate. The doctor and nurse said moving his little legs is very good for him.

Every day we receive email messages from new people and this continues to lift our spirits. We also read all the comments on the blog and sometimes we laugh and other times we cry. We have some very close friends with interesting senses of humor but we love them just the same. Dirk in particular enjoyed a good laugh a few times yesterday.

Thanks for your continued good thoughts.

Janie and Dirk

Dane's Journey

Hello,

We thought we'd include this great shot of Dane taken this past summer on the dock at our cottage. It was one of many photos he and his sister posed for that beautiful summer day and it's an awesome picture of our "beach bum".

Today was a very eventful day. We had to be at HSC for 8:00 am for Dane's bone marrow, spinal tap and chemotherapy treatment. For the most part, it went very well. The exception was when it came time to poke him again for his IV. Although his arm vein had been frozen with special cream, being a sceptic, he didn't believe it would actually dull the pain. He worked himself into quite a frenzy before the needle went in and then when the actual IV was put in, he barely flinched. He commented a couple of times later on that "it hardly hurt with the special cream". We will be reminding him of this next week when it's time for his next IV. We are also taking a special person with us to that appointment, his big sister Ashley, to help him through. He is sedated for the bone marrow and spinal tap so he feels nothing. He didn't even complain at all later today about any pain in his back or hip. He receives the chemo treatment through his IV so all he feels for that is a cold sensation in his arm as the medicine is going in.

We were scheduled to return to Cancer Care tomorrow for another check-up, however given we've been at HSC three times this week and the fact he is doing so well, we were "excused" from our appointment. Barring him getting sick in the next few days, we don't go back to Cancer Care until next Tuesday. Dane is VERY happy to have the next four days "off" from his hospital schedule and is looking forward to sleeping in tomorrow!

We received very good news late in the day regarding the levels of his cancer cells in his bone marrow. When the first bone marrow test was conducted last Wednesday, he had more than 80% cancerous cells. After just one week of treatment the percentage had dropped to around 8% - a reduction of over 70%. According to the Cancer Care team, that is a great result for week one and they are very pleased with his progress. Dirk and I breathed a huge sigh of relief today that so far he is responding well to the treatment regimen. He will need another bone marrow test next Wednesday, as one must be done if there is over 5% cancerous cells still present. He will not need to undergo another spinal tap though until Day 28/29.

Dane's hemoglobin has dropped again and is hovering in the zone where he will likely need another transfusion next week. We'll be watching him very closely over the next few days as we can definitely see a decline in his energy level when it gets low. If that is required, it will be done on Tuesday at Cancer Care.

Dane also received very exciting news today that he has been granted a "wish" through the Children's Wish Foundation. He will not be able to travel for a number of months so the plan right now is to request a trip to see an NHL game somewhere warm in the US next fall/early winter. Now that the phone call came today, he believes his "wish" will actually come true, even if it's many months away. This news helps ease the kids' disappointment a bit that we had to cancel our trip to Disney World (we were to leave January 25 for Orlando).

The emotions in the house have levelled off between Dane and Ashley the past few days. His mood swings are a bit less at this point and Ashley is more accepting of our current situation. She turns 9 in a couple of weeks so we are planning a special celebration to lift her spirits. Dirk and I are hanging in there, although I hit a wall today and the fatigue has really kicked in. So far all is good with the baby and my OB is keeping a close eye on me.

We continue to eat VERY well thanks to everyone's generosity. Dane is ravenous about food in a way we have not ever seen before - it's actually quite humorous to see that hungry look in his eyes.

We look forward to your emails and blog comments - as I said yesterday, it brightens our days and lifts our spirits.

Thanks to everyone who is holding good thoughts for our special son.

Janie and Dirk

Dane's Journey

Good evening,

Just a quick entry tonight before we call it quits for the day - I will follow-up with a more detailed write-up sometime tomorrow. Thank you to everyone for reading the blog, posting comments (they are very uplifting), sending emails and phoning. We are trying to respond to all the messages, but sometimes we just run out of energy and can't get back to everyone as quickly as we'd like. Please know we appreciate every contact that is made with us as we fight this battle.

The response to Dane's diagnosis of ALL has been overwhelming and with so many people in his corner, he is a very lucky little boy. His first day at the Cancer Clinic yesterday went very well - the doctor commented several times how "fantastic" he looked, especially his rosy lips. The double thigh injection was definitely the low point of the visit and he cried out for his big sister Ashley many times. We just hugged him really tight and he made it through the needles. Fortunately he doesn't have to go through that again during the induction phase of his treatment (first 28 days). The Cancer Clinic staff are amazing and the facility is a child's paradise. Dane stuck very close to us on this visit but we'll see if he ventures to any of the activities the next time.

The procedures scheduled for today had to be postponed until tomorrow due to him not fasting long enough, so it's an early visit to HSC for us in the morning. We should be wrapped up before lunch and hopefully everything goes smoothly.

Thanks to everyone for the continued emotional and moral support. The home cooking and baking are just what the doctor ordered for all of us, especially a very hungry seven year old on steroids who has gained three pounds in the last week!

Please continue to keep Dane in your thoughts.

Janie and Dirk

Dane's Journey

Hello everyone,

We know there are many people following Dane's journey so we accepted a good friend's offer to create a blog site to share our various updates. Today is our inaugural entry and I'm hopeful I've mastered this technology.

We just took this picture of Dane about half an hour ago. He was very excited to open a new set of hockey figurines that he received as a gift from a hockey coach he had two years ago. As you can see, aside from a bit of bags under his eyes, he looks great! He has felt awesome today, I would say probably the best he has felt in several weeks. He had lots of energy and was in good spirits. Today was a "free day" for Dane as there were no trips to the hospital. I'm sure that his fingers are tired from the several hours spent playing his new Madden 09 on the Wii!

For those that are catching up on Dane's journey, after a few weeks of not feeling well, a couple of skin infections and several return trips to Children's Hospital, he was admitted on Monday Jan 5, 2009. Our worst fears were confirmed the next day when he was diagnosed with Acute Lymphocytic Leukemia (ALL). His diagnosis day was horrendous and terrifying but we survived. The next four days were filled with many tests, "pokes", a blood transfusion, IVs and nurse/doctor check-ups. He was kept at Children's until Saturday when we were released early for "good behaviour". He was feeling great, his hemoglobin count was way up from earlier in the week and he was literally running laps around the ward pushing his IV. We were very relieved to be back in our own home on Saturday and he had a good sleep that night.

Yesterday was a very tough day. Dane was feeling well, however he is on many medications, specifically steroids that make him moody & irritable. Ashley's emotions peaked as well, as she really missed her mom & dad and was struggling with all the attention being focused on Dane. Of course she is also old enough to realize leukemia is cancer and that's a very bad thing, so her fears about her brother's survival were front and center. Added to their emotions were two exhausted parents (one of whom is five months pregnant) at their breaking point. By the time 9:00 pm arrived, we were all lucky no-one had run away. Fortunately we all had pretty good sleeps last night and today has been much smoother.

Tomorrow and Wednesday will be very hard, as we will be spending most of the time at the Cancer Clinic and Children's Hospital. Dane has to have his blood checked, two injections in his thighs and a doctor check-up tomorrow. Wednesday he undergoes another bone marrow test, a spinal tap and a chemotherapy treatment. Fortunately he will be sedated for much of these procedures and the only pain he really feels is from the pricks in his back. Following Wednesday he shouldn't have to return to the hospital until next week unless heaven forbid he gets another infection (which we are assuming won't happen). Dirk and I really struggle with all these tests and procedures - it is heart wrenching watching our special son during this very hard time. However this is our new reality and we have to find the strength to make it through - we owe this to Dane, Ashley and our baby daughter due in May.

Before I sign-off for tonight, I'd like to pass along our heartfelt thanks to everyone in our lives for their tremendous support and caring. The list is just too long for me to name people individually and I don't want to forget anyone, however you can't imagine how uplifting the phone calls, e-mails, visits to the hospital/home, care giving for Ashley, presents for Dane and Ashley, food and baking, work arrangements and offers to shovel, clean, entertain Ashley, etc. have been. We are very fortunate to be surrounded by such great people and to all of you - THANK YOU!!! Dane's treatment is scheduled to last three years, so that combined with a new baby in a few months is going to make this journey a marathon vs. a sprint. All your support and assistance is what will get us through this most difficult time.

For those of you who know our family history well, Dane's illness hits doubly hard because ten years ago our first-born child Cole Andrew passed away from a rare genetic disorder when he was 17 days old. We have walked this kind of walk before, and it's a hurt that cannot be described. This time though the prognosis is very favorable and Dane will make it - he just absolutely has to.

We will post another update in the next couple of days. In the meantime, please hold good thoughts for Dane.

Warmly - Janie and Dirk