Dan's Heroic Battle with Cancer
Norm and Mel met when they were studying to become teachers. Over the years they both were able to find high school teaching positions within the Greater Saskatoon Catholic Schools division.
Norm loves his family, technology, fishing, music, and lately his passion for modern day boardgaming.
Mel comes across as shy but is not. :) She loves her family, Survivor, reading, and a whole lot of peace and quiet, which she rarely gets.
Daniel is eleven years old and loves pizza, pasta, and pop music. He can dance up a stormy like nobody’s business.
Sophie is the quintessential younger sister. She comes across as shy but is not. :) She's bilingual (French), a Scottish Highland Dancer, and the best sister that Daniel can have. Sophie is very caring and compassionate, in her own way, of course.
Daniel was born with Down Syndrome and this is where their journey begins.
Although many of us would take this as a set back, both Norm and Mel took this as a set ‘forward’.
They took on the many challenges common in children with Down Syndrome such as Daniel's open heart surgery needed to repair a hole in his heart when he was a newborn. Speech and language therapies have always been part of their 'regular' lives.
Studies have shown that children born with Down Syndrome have a greater risk of developing cancer and in January of 2012 the family received news that Daniel had leukemia.
It was always in the back of their minds but it now became reality front and centre.
The terminology used is Acute Lymphoblastic Leukemia or ALL for short.
Daniel’s initial treatment was for 2 years but the family made a brave decision to extend it to 3 years.
During this emotional battle, the family pressed forward and in addition to all the stress and pressures of dealing with a child undergoing chemotherapy for cancer, Norm lost his father. It was a terrible loss for everyone.
After many hospital stays and many trips to the Saskatoon Cancer Centre, Daniel battled cancer for 3+ years. He has all the Beads of Courage and the many superhero T-shirts to prove it such as Dan's alter ego, The Incredible Hulk.
Last week after being off treatment for 22 months, the family was informed that Daniel’s cancer had returned. This is devastating news for the whole family, but in true warrior fashion, Norm and Mel, hold their heads high and are tackling this straight on.
They've already met with the doctors and there is a plan in place for the first month and then they will have to see how Daniel's body responds. It's likely going to be a tough month for his body. How long this treatment will continue is uncertain at this time. Daniel is currently in the hospital awaiting surgery to install a port. This is the port where chemotherapy will be administered.
This is the time where we come in.
Over the course of the next year and longer, the family will feel the pinch financially.
All types of expenses can happen like meals during hospital visits, parking, groceries or even the possibility of lost wages.
Gift cards, house cleaning, homemade meals or a card sent in the mail saying ‘We’re thinking of you’ are all great and amazing examples of expressing how we would like to care and help.
I know for certain that both Norm and Mel have a ginormously huge social network with family and friends and this is OUR chance to show them that we're not just another 'Facebook' friend.
If you feel it's important enough please care and then share this gofundme page with your own friends (Facebook). It is for such a good cause.
This page provides the opportunity to all those that are most willing to help but can’t because they may live too far.
You can provide your name or donate anonymously, it's your choice. All donations will go directly to Sophie, Daniel, Mel, and Norm.
Your thoughts, prayers and financial gifts are greatly appreciated.
Daniel's blood work is still low and he is getting a transfusion today. Still no school. (Mel-Facebook)
Sept 7, 2017
The Hulk (Daniel) is on the building. Hopefully for the LAST TIME! (Mel-Facebook)
Sept 5, 2017
First day of grade 3! (pic of Sophie) No school for Daniel because his immune system is too weak. (Mel-Facebook)
Sept 2, 2017
Gold, a precious metal, to represent our precious children. (A reflection on a gold ribbon representing childhood cancer.-Bernard) Cancer has been a part of our family's life since January 12, 2012. 2057 days: 1387 of those days have been filled with your child has leukemia, chemotherapy, pokes, medication, hospital stays, remission, clinic visits, blood transfusions, bodily fluids, x-rays, echo cardiograms, ultrasounds, relapse, surgery, bone marrow aspirations, two ports, femoral line, tears, anger, being hit and scratched by our child, forcing in oral medication, pinning him down for procedures, air plane rides, other hospitals in other cities and another country, tons of laundry, amazing nurses and knowledgable and caring doctors, family, friends, doubt, faith, prayers, stress, anxiety, depression, hope, love, laughter and many more things no one can possibly understand unless you have a child with cancer.
Daniel and our family have had our own unique challenges since he was born. He is our greatest gift from God and someday he will return to God. I pray that's many, many years from now. This is my life, everyday. (Mel-Facebook)
August 24, 2017
As if it wasn't already a great day, Daniel received his wish from
Children's Wish this morning of an Apple technology package. Appropriate for the kids who lives for watching tv, playing games on the iPad, and making board game videos for YouTube with Daddy! (Mel-Facebook)
Thank you Children’s Wish! (Mel-Facebook)
August 24, 2017
My hands are shaking as I type: We finally received the call we've been waiting for and will be leaving for Philadelphia on September 24th. I know he will have to do a week of chemo to kill as many T-cells so they can be replaced with his SUPER-T cells. Guessing the usual tests as well. My head is spinning! I'm so excited and nervous all at the same time. Glad we can finally start making plans and get the show on the road to getting Dan-the-man into remission. (Mel-Facebook)
August 22, 2017
Well Daniel is back to a weak immune system and needs a break from the oral chemo. He's feeling good and his energy is improving every day. Just need to get some high calorie food into him to start putting weight back on. Any suggestions? (Mel-Facebook)
August 21, 2017
At the cancer centre for Daniel’s check up and watching coverage of the solar eclipse. (Mel-Facebook)
August 16, 2017
Such a strange and beautiful life I live. Monday was a successful day for Daniel at the cancer centre, yesterday I helped prep food for Folkfest and mashed buckets of potatoes with some great ladies, today is set up for Folkfest and then tomorrow the fun begins. Sophie is so excited to dance and I couldn't be more proud of the amazing girl and sister she is. (she is amazing, Bernard) (Mel-Facebook)
August 14, 2017
Clinic today for blood work to see if Daniel's counts were high enough to start oral chemo. Last week his ANC (immune fightine cell) was 0.2 and today.....wait for ....... 2.48!! Holy heck batman. We all did a cheer when we heard the numbers. Dr. ... did another huge cheer when he saw that Daniel's kidney function is improving as well. He has been doing so poorly and today we see the old spark back and his weight is going up from here. Dr. … said we would likely hear from CHOP soon so maybe by the end of September? I'm so excited to get this treatment done. Stressful as heck trying to balance everything around it: work, money, family life etc. but the potential is so huge. (Mel-Facebook)
August 12, 2017
What does it take to keep the Hulk happy? Chair pulled up to the tv, blanket, box for books, books, notebook and pen to write, Sesame Street, glass of milk, and tortellini with cheez whiz with a bit of milk poured in from his glass and mixed with a spoon by mom so his fork doesn't get dirty. One dose left! Now he's cold…… (Mel-Facebook)
August 10, 2017
Hard to believe it's time to look towards school soon. The biggest question we've been asked is "What happens this fall?". We finally have enough information to make this decision. …Daniel's body should be adjusted well to the new milder chemo regime and will go to school too. Thankful his amazing EA and school who take such good care of him.
(Aside-I’ve never met this amazing EA but apparently she is someone who has fallen from heaven and is not simply Daniel’s EA but is a member of their family.-Bernard) Thanks so much everyone for your thoughts, texts, messages and prayers. They mean a great deal to us as we await the call to travel to Philadelphia. (Mel-Facebook)
August 9, 2017
Daniel on steroids is our own personal hell. (Mel-Facebook)
August 8, 2017
Daniel's immune system is still too weak to start oral chemo. Steroids started and waiting for the Hulk to appear. (Mel-Facebook)
August 7, 2017
Tomorrow is the day we begin Daniel's maintenance chemo. I hate that we still have to poison his body but I'm so happy this route will allow him and us as a family to resume somewhat of a normal life while we wait for Philadelphia. Daniel has only been to the clinic so far the entire summer!! Good thing he's my home body. (Mel-Facebook)
August 6, 2017
"You have to take care of yourself in order to best take care of someone else. For us introverts, that means maintaining a bit of space in our schedule for quiet and autonomy." Brian Gresko (wo
rds being reflected by Mel-Facebook)
August 2, 2017
Well Daniel was a no go for chemo again. His body has had a 20 day break from the escalating methotrexate and still hasn't recovered enough. Plan B: maintenance chemo like he had to finish off his last treatment. Oral chemo meds everyday, another once a week, 5 day pulse of steroids every month and an IV chemo of vincristine once a month. He will also have a spinal chemo next month. His doctor said to take a break and he will start on Tuesday. We are so relieved!! This means he will be well enough to go to school, Norm can work full time and Daniel's hair will grow back. He should gain weight and generally look and feel a lot healthier while we wait to go to Philadelphia. Awesome news! CHOP was consulted and said they've had a lot of success with kids coming in with this as front line chemo. (Mel-Facebook)
July 28, 2017
CTV news is coming this morning to interview us about Daniel's upcoming CAR T cell treatment in Philadelphia. Check out the news tonight! I'm so nervous. On a side note, our house is spotless....okay just the main floor. (Mel-Facebook)
July 20, 2017
Acute lymphoblastic leukemia is the most common childhood cancer, about 30%. Guess what the fourth is? Relapsed ALL. It has the most aggressive chemotherapy and radiation regime to attempt to maintain remission in the child. Since his initial diagnosis in January of 2012, he has spent 45 months out of a total of 72 taking some form of chemotherapy: IV, oral, and in his spine. Through it all, Daniel's spirit has never wavered. (Mel-Facebook)
July 17, 2017
Well chemo was a no go for Daniel today. His immune system was too compromised. Looking forward to a quiet week and blood work on Friday to see if he can start chemo again on Monday. (Mel-Facebook)
July 9, 2017
I'd like to share a brief update on what we learned in Philadelphia at the children's hospital (CHOP) about Daniel's upcoming treatment. The number one question we are asked is...WHEN? We don't know. His cells are in Philly waiting there turn to be modified into recognizing cancer cells and then grown. Once this is complete we wait our turn to have them infused at CHOP. They can only infuse two children a week as side affects can be extreme and land them in PICU. It would be dangerous for patients to overburden the hospital. Best guess is October or November.
We went through all of the potential side effects, and there are MANY but few are life threatening as they have enough experience now to know what to expect. Some of them are quite serious so it was a bit daunting given we have no idea which could happen to Daniel. Most kids feel like they have a really, really bad flu and end up in hospital to manage fever, pain and monitor vitals. They just have to ride them out. The CAR T cells will kill all B cells some of which are cancer and some of which are normal. We can live without our B cells but it will leave him slightly immunocompromised for the rest of his life. They treat this with an infusion of a blood product to top up his immune system. How often, we don't know. It's a wait and see. I was really happy to hear that Down syndrome doesn't affect any portion of the treatment. The healthier he is with the least amount of cancer the likelihood the side affects will be less severe. They were thrilled with how healthy Daniel is right now. The chemo is doing it's job and kicking butt. It's so hard to see him so sick though.
Future options were also discussed. What do we do if the CAR T cells fail to reproduce and die? Depending on how early it is they can do another infusion, for example after a few weeks. Their ideal time frame seems to be a year. If he can make it a year then it's likely he will stay in remission. If the cells die and we see the return of cancer cells after 6 months or so we can try an infusion again. Or we can choose to go to a bone marrow transplant. We many eventually end up having to choose that route but I'm hoping for the best possible result. Bone marrow would be hell on earth and we'd need to be in Calgary for 6 months and he'd quite ill for a long time. He may not even survive the process.
The best part of CAR T is no more chemo will be needed as long as the cells are sticking around doing their job. He will need frequent follow up visits which is why we need to stay in Philadelphia for six weeks.
For now we carry on with chemo here at home. He had his second round on Friday and it was only two drugs. His third round will be next Monday and Tuesday and will be another heavy hitter like the end of June. One last round will happen towards the end of July and then we wait to see what the next phase will look like. He's not eating a lot and losing some weight. So hard to believe he packed on 10 pounds last summer with his underactive thyroid! He's lost all of that plus another good 10 pounds I'd guess. But despite the barfing and not eating, he has the best sense of humour and temper of any kid I know.
It you're still reading this I hope you're having a wonderful summer. Thank you for your continued prayers and feel free to shoot us a text if you're in the area and would like a visit. We're sticking close to home. (Mel-Facebook)
July 7, 2017
Home from the clinic after another round of chemo. Daniel is feeling pretty good right now. Likely not so much by late tonight. We're all tired and happy to be home. Looking forward to a quiet weekend. (Mel-Facebook)
July 6, 2017
Home safe and sound. Missed our connection in Toronto and came home via Edmonton but we're here. Daniel has chemo tomorrow morning at 8:45. Early to bed! (Mel-Facebook)
July 5, 2017
I love Philly. Did a double decker bus tour and our guide was a former Marine. Informative, loud and scary all at the same time. Felt a bit like US history boot camp. Survived one of the craziest cab rides during rush hour. Daniel added to his water bottle collection from U Penn and now we're relaxing. Home tomorrow afternoon. What a whirlwind. (Mel-Facebook)
July 5, 2017
All done at CHOP! Got a lot of information and now we just wait until his cells are ready. Not sure when that will be. I've missed Philly! Our shuttle driver listens to great gospel music. (Mel-Facebook)
July 3, 2017
Feeling nervous and excited to head to Philadelphia to learn more about the CAR T cell treatment. (Mel-Facebook)
Daniel started a block of chemo yesterday. Two days in a row and he's feeling pretty rotten. (Mel-Facebook)
June 20, 2017
Well things seem to be moving a lot faster than I'm prepared for. Children's Hospital of Philadelphia called yesterday to schedule an appointment for a check up and to discuss the treatment.....they wanted the 28th of June! They were great at moving it to July 5th but that sets off a domino effect. Daniel and I have expired passports so I had to rush those after school to have them ready by next weekend. Now I have to figure out flights and where to stay! Thankfully Sophie is covered and staying with her best friends. OMG. So many balls in the air right now. I just need to get through the end of the school year too. Pray for my sanity and have a drink for me too. (Mel-Facebook)
June 14, 2017
-This amazing machine can do so many things! It's currently taking in Daniel's blood and separating the T cells out and putting the rest back into him.
-Daniel is a rock star! He's doing so well. Thank goodness for the iPad to keep him entertained. Hopefully they can collect enough cells and he can be discharged this evening. -It's official, they were able to collect enough cells. Waiting for his line to be removed and we can spend the night at Ronald McDonald House! (Mel-Facebook)
June 13, 2017
-Busy start to this morning: checked out of hotel and moved to the Ronald McDonald House which is amazing and made it to the hospital for 10. Discovered Daniel is terrified of pigeons so mom had to chase a few in circles to get them off the side walk. Blood work done and looks great. Now we wait and keep a very hungry Daniel entertained while waiting for surgery.
-Surgery is done and went well. Settled in to his room and hanging out. Biggest challenge will be keeping him lying flat until the line comes out sometime tomorrow! (Mel-Facebook)
June 12, 2017
Day 1 at the hospital went well. Just routine blood work and check up. etc… (Mel-Facebook)
June 11, 2017
Arrived in Toronto safe and sound. Hot! 37 with humidex. A few of the Rush players were on the flight and loved Daniel's Elmo suitcase. Thanked them for a great season. (Mel-Facebook)
June 8, 2017
Flights, check. Hotel, check. Appointment at Sick Kids, check. Look out Toronto the Lepage family is on the way. (Mel-Facebook)
June 6, 2017
Looks like we are officially off to Toronto on Sunday. Lots of things to get in place. Head is spinning. (Mel-Facebook)
June 5, 2017
Looks like we could be heading to Toronto on Sunday to go to Sick Kids for Daniel's T-cells to be taken from his blood. He is chemo free right now and is in a prime window for the most cells in his blood stream. Not a clue about any of the details. Right now way more questions than answers. Should be a crazy week.
June 2, 2017
Finally some good news. Daniel can have his T cells extracted at Sick Kids in Toronto. From what we understand it will be a 5 day stay max and hopefully he can go in a couple of weeks. Even better, no chemo for now! (Mel-Facebook)