Davis’s fight

Davis was 10 years old when he was diagnosed with stage 4 neuroblastoma. Davis used to call March 8, 2006 “the stupidest day ever,” but it wasn’t the first time he’d been diagnosed and it wasn’t the first time he’d battled cancer. Davis just didn’t remember the first time because he was so young.

Davis and his furry companion.

In October 1995, at three months, Davis was diagnosed with histiocytosis X and was treated with high-dose chemotherapy. When he was five months old we almost lost him. By the time Davis was 15 months, he was a happy healthy toddler and we gave him a little sister six days after his second birthday.

All was perfect in our world. Davis continued with yearly checkups in the oncology clinic. He was 10 years old now and his sister Jessie was eight. At the end of February, we took Davis and Jessie on a surprise trip to Disneyland. A couple of months before the Disney trip, Davis started complaining of leg pain, but our family doctor assured us it was just “growing pains” and that he would fine. Davis had just had a checkup at the oncology clinic in January, so we were convinced he was okay. His pain would come and go and I prayed he would be pain-free for the trip to Disneyland. Davis was such a trooper and insisted he was okay, but for five of the seven days in Disneyland, we rented a wheelchair for him. He tired quickly and just couldn’t walk properly.

The day after we returned home, I took Davis back to the oncology clinic. I knew they would get to the bottom of these “growing pains.” Three days later, after many scans and tests, on March 8, everything crashed. Davis had been healthy for nine years. Cancer was the last thing I expected to hear. I literally fell to the floor the moment the doctor shared the results. What is neuroblastoma? I couldn’t even pronounce it! My husband Brad was at work and Jessie was at school. Davis had fallen asleep in the waiting room, so a nurse had moved him to a bed somewhere. I sat on the floor in that tiny exam room and sobbed.

Hanging out in his room at the Alberta Children’s Hospital.

Brad arrived and we talked with the doctors, but I don’t remember a word that was spoken. I only had the word cancer swirling around in my head and this other strange word — neuroblastoma. We took Davis home and soon Jessie came home from school. The four of us sat in the living room and talked, and cried, and talked and cried some more. Davis really didn’t say too much when he learned what lay ahead, but I do remember him having a sense of relief. It was a relief to finally know that there was a very real reason for his leg pain and now he could be fixed.

The next day, Davis was admitted to the Alberta Children’s Hospital and our cancer journey began. Over the next 14 months, Davis fought hard and he did it with complete and total determination. Never once did he say, “Why me?” Never once did he complain about needles or taking yucky meds or not being able to go home. The first five months involved high-dose chemotherapy, then surgery to remove what was left of his tumour. The tumour was attached to his right adrenal gland, so that came out too. After recovering from surgery, it was time to prepare for his bone marrow transplants.

In July and August, Davis had more high-dose chemo and we celebrated his 11th birthday in between two transplants. During those six months, Davis and I had spent far more nights in the children’s hospital than in our own beds at home. The longest stretch was 48 nights, sometimes with a day pass, but back in for the night. Davis would play bingo with the other kids in the unit via walkie-talkie. He mastered a lot of video games and we always watched The Ellen Show at four every afternoon. Sometimes we would sneak out (giggling) in the middle of the night with Davis holding onto his IV pole(s) and me speed-wheeling him through the deserted halls of the hospital at 3 AM. We definitely made our own fun!

Oh but there was a lot of ugly too. Davis dropped down to just under 60 pounds. He had a puke bucket within arm’s reach 24/7 and there was one chemo that required him to have a bath every four hours for five days because it burned his skin black and peeled off. It was a world of endless scans and procedures, bone biopsies, chemo, pokes, surgeries, sleepless nights, fear and uncertainty and many tears. I learned how to soundlessly sob myself to sleep every night. Davis could not handle me crying under any circumstance. He could be in a drug-induced sleep or barely out of a sedation and, if he heard one tiny sob come out of me, his eyes would fly open and he’d give me his stern look, “No crying Mum!”

Yes, there was a lot of ugly, but all through this he was still my sweet beautiful boy. We all had the drive and determination to do whatever it took to get our boy healthy again and our family back under one roof.

Davis showing off his Beads of Courage.

In September and October, Davis had 15 radiation treatments and then started maintenance medication. By November, he was doing great and back up to just over 100 pounds. Davis had completely missed the last few months of grade six and the first few months of grade seven. In December of 2006, 10 months after diagnosis, he was so happy to be able to go back to school for a few days here and there. He convinced his doctor to have his Broviac (port) removed. Five days before Christmas, out it came. He declared this to be, “The best Christmas present EVER!” In January 2007, he was back at school full-time and completely in remission. All was perfect again in our world.

A couple of months into Davis’s treatment we had learned about Kids Cancer Care. Camp was just starting up for the summer, Davis was far too sick to go anywhere, but Jessie was given the opportunity to go for a week. She said no! She refused to go without Davis and said she would just wait until they could go together when he was all better. In July 2007, that time finally arrived. We took them to the meeting place and off they went on the yellow school bus. I don’t think I slept a wink that week and I’m sure I bit off every one of my fingernails. I knew they were in good hands and Davis had all his meds with him. I didn’t know at the time, but that week at camp was the beginning of a new family for us — Kids Cancer Care.

When we picked them up a week later, Davis and Jess both talked non-stop about their camp adventures. They couldn’t wait to go back again. I remember asking Davis a few days later if he’d met any boys his age at camp, kids he could talk to about his cancer journey . He said, “Mum, at camp there is no cancer. We all know we’re the same, but we leave cancer at home and just have fun.” My wise-beyond-his-years little boy had just turned 12.

A proud older brother! Davis and his little sister, Jess.

Over the next 17 months, we lived a normal happy life. Well, it was our new normal. There was still anxiety and fear, but we all worked together to combat these fears. As the weeks and months went by, we all learned to breathe a little easier. Davis was still having blood work done every few weeks and scans every three months, so with each good result, we were able to start putting the nightmare behind us.

They both went to camp again in the summer of 2008 and we enjoyed lots of other Kids Cancer Care programs and events in between. We had a new family of friends that just “got us” at a time when there was many others who could never truly understand what we had been through. All was good in our world. Little did we know what was to come.

At the end of September 2008, Davis suddenly had severe back pain and on October 2nd our worse nightmare was confirmed. The dreaded beast was back. All these things came rushing back to us that we thought were locked up in the past forever. The cancer was back in his bone marrow. His knees and upper legs, shoulders and upper arms, and areas of his skull, were all infected. Davis was 13 and had just started grade eight. It was like living in a really bad dream, or maybe more like a reoccurring nightmare. He was mad as hell to be back in the fight, but he had a let’s-get-at-it attitude. Nothing was going to slow him down. He would do whatever it took to fight it, while fitting in all the fun stuff in between.

If this is how it was going to be for a while, then we had to adopt Davis’s attitude and look at the positives. Davis was loved by his nurses, doctors and caregivers in the hospital and they were all such wonderful and amazing people. Knowing everyone already made it a bit less scary for him. The fact that he pretty much knew what to expect made it a little easier as well.

Davis had surgery to have a port put in (no Broviac this time) and his treatment started. Five days of out-patient chemo, where he was hooked up for about seven hours a day in the hospital and then home for the night. Three weeks to get his blood counts back up and then another five days of chemo. By early November, his hair was gone again, but he looked forward to going to school because he was the only kid who was allowed to wear a hat in class.

Captain of the Calgary Flames and Davis’s hero talk hockey!

His scans in December 2008 and, then in March of 2009, showed a bit of improvement, but the cancer was still there. June scans showed no improvement at all, so it was on to plan B. Davis’s body really needed a rest from the high-dose chemo he’d been on for the past nine months, so he went to low-dose oral VP-16 that he took at home. His scans started to improve again and we had a great summer. Both Davis and Jessie went back to summer camp and had a great time. Davis also went to Teen Camp in the spring and fall and just loved it. It’s such a magical place where he could be free of everything and just have fun.

We sailed along in our new normal for the next 11 months and Davis’s scans continued to improve. In January 2010, he had his port removed and he only had one tiny spot in his right groin area that was showing any disease. We were all doing the happy dance once again. He wasn’t NED (no evidence of disease) yet, so he stayed on the oral VP-16, but we just knew he would be cancer- and chemo-free soon.

It didn’t turn out that way. In April 2010, we crashed for the third time. Davis’s scan was not good and was showing new glowing areas of the beast. On to plan C with a combo chemo of Temozolomide and Irinotecan. They are both an oral chemo, so no need for a port this time. Davis was thrilled about not having a port put back in his chest, but really bummed when he lost his hair again, for the third time!

In June, his scans were unchanged. In July, he turned 15. Davis moved on to more new drugs and, in August, had his first MIBG therapy (radioactive infusions) at the Edmonton Cross Cancer Institute. His second therapy was in October, when more new glowing spots showed up in the results.

In September 2010, Davis started high school. In October, he was accepted into Kids Cancer Care’s Teen Leadership Program. He was so excited about it. Throughout the fall and winter the kids volunteer and organize fundraising events to pay for a volunteer service trip abroad. Davis’s teen group was to go to Mexico in March for five days and build homes for families in need. He was so happy to be accepted into this program and worked hard at his fundraising for the trip. Davis had good days, but there were more and more bad days, and by mid November, he wasn’t able to go to school anymore. More complications had arisen, including a large lump on his head. The CT scan revealed three new metastatic lesions on his skull. In early December, he had his third MIBG therapy in Edmonton, but it was mainly for pain control. The results were not good. Everything glowed.

Davis drops the puck at Calgary Flames home game against the Edmonton Oilers.

Davis went on to have 10 radiation treatments on the back of his head, finishing three days before Christmas. He’d lost about 15 pounds in six weeks. January 2011, Davis had another five rounds of radiation on his brain stem and continued with different combinations of chemo. He’d lost the muscle in the right side of his face and slurred a bit. The hearing in his right ear was gone.

I was on the road of learning to accept things that were out of my control, but I don’t think I was quite there yet. I had learned the true meaning of hope and how I really needed to hold on to it. I was not going to give up or let go of hope, but I did need to learn to accept things as they happened.

At the end of February 2011, the Kids Cancer Care’s teen leadership group did a special fundraising event for their Mexico trip and tied it with the launch of the new Kids Cancer Care logo. Davis was to be their spokeskid for the media and fundraising event. He had written his speech, but he still wasn’t sure if he had the courage to get up on stage. He was very conscious of his drooping eye and mouth and was afraid no one would understand him because he couldn’t quite speak clearly. He received so much encouragement from all the other teens and I was beyond proud of him when he got up on stage and read his own words. The last line of his speech still echoes in my mind: “I don’t know what the future holds for me, or if I even have a future, but I do what I can, I keep pushing forward and I refuse to give up.”

Afterwards, he was mobbed by reporters in his first media scrum. Davis was on the news that night and in the Calgary Herald the next day. Here was our boy, fighting for his life, but was more concerned, and determined, to get to Mexico with his team and help build homes for families in need.

Just a few days before the trip, we realized there was no way Davis could go, he was far too weak. He came up with the idea that maybe Jessie could go for him. He was devastated, but I think a bit relieved as well. Jessie was just 13, at least two years younger than all the other teens, but she was determined to go and make her brother proud. Kids Cancer Care welcomed her with open arms and every night Jessie and the teens Skyped Davis from Mexico with updates on their daily activities. They included him in every way they could and he was so happy to still be part of the team.

Davis absolutely refused to give up. He was set on beating the cancer forever and living his life to the fullest. Our boy showed more determination than any 15-year-old boy could possibly have. On March 17th we were told there was nothing more that could be done. Davis was so tired; he’d been fighting for five long years. No, he didn’t give up, but his body was failing him and he accepted his fate with grace. The only thing he was afraid of was being forgotten. We assured him that would NEVER happen. On March 26th 2011, Davis passed away. He is forever 15. We love him and miss him every single day.

The Teen Leadership Program dedicated their first volunteer service trip to Davis.

Davis has not been forgotten. After Jessie’s first service trip the Calgary Rotarians built a miniature house for Davis. When Davis passed away, Jessie returned it to Kids Cancer Care. Now every year, the Teen Leadership Program awards a teen, who has exhibited Davis’s strength of character and leadership, a Davis Weisner Award. That teen takes home the miniature Davis house for the year.

Davis will never be forgotten. Every year, a teen exhibiting Davis’s character takes home the Davis Weisner Award, a miniature home, for the year.

Our lives have forever changed trying to live each day without Davis. I can’t imagine where we would be without our Kids Cancer Care family, supporting and lifting us up these past eight and half years since Davis has been gone. Jessie continued with the Teen Leadership Program for the next four years and also went to summer and teen camp where she made life-long friends. She has done so many speeches for fundraisers and events over the years and, in 2015, she was a kid coach in the Kids Cancer Care High Hopes Challenge. Her passion for fundraising and spreading awareness for childhood cancer grows stronger all the time.

I truly believe in the old proverb, “It takes a village to raise a child,” and Kids Cancer Care has definitely been our village. They did, and have done, an incredible job for both of my children!

~ Davis’s mother Janine

Davis — 15 forever.