Christmas and Cancer

katie's stone-editI know…’s Christmas but childhood cancer doesn’t take a holiday. Today there are children who were just told they have cancer. There are those in hospitals getting chemo, radiation and bone marrow transplants. Some are learning what terminal means having been told they have run out of options or there are no treatments. A few children are breathing their last as their parents hang on to every precious moment with them. And, yes, many families are learning what the holidays are like without their child, sibling, grandchild, nephew or niece.

So to those who would say, “Can’t you take a break?” I reply, “Cancer doesn’t take a break.”

For the approximately 224* families who are discovering for the first time what Christmas is like without their child this year cancer didn’t give them a break. Add those families to the 224 who are enduring their second Christmas in mourning, 224 going through their third and on and on it goes.

Childhood cancer doesn’t go on vacation so neither do I. I will continue to do what I can to raise awareness, to attempt to highlight the importance of this issue and hopefully help make childhood cancer research a priority in 2014. I hope you will join me. If we don’t…. nothing will change and next Christmas 224 more families will visiting a grave stone.

*Statistic taken from the Public Health Agency of Canada website. It is the sum of the number of deaths listed for children under 15 and adolescents. Deaths are only counted up to 5 year post cancer diagnosis and only includes those who have died from cancer. It does not include children who have died from the side effects of treatment.

Dear Matt Smith, The 11th Doctor:


Thank-you. Thank-you for entertaining us, for being with us, during the worst hell of our lives. For 22 months now we have been medically displaced, 1,000 miles from home as my 16 y/o daughter first battled cancer, then heart failure caused by the chemo and now lives on the edge of a sword with an electric heart pump [LVAD] as she waits for a heart transplant. Your incarnation of The Doctor, with his whimsy, humour, optimism, hope, childlike playfulness along with the wisdom and deep sorrow that comes with suffering is just what we needed. Throughout the long, heart wrenching months you have looked down on my precious hero from the poster that has been transferred from hospital to hospital to ICU to CCCU to room to room [to room…etc.] to apartment at Ronald McDonald House and now the small apartment we temporarily relocated too in downtown Toronto as this wait for a heart could take another year or two.

Dr. Who has been a constant light through it all. We have watched many seasons over and excitedly waited for new episodes that did not disappoint! We have laughed, cheered, gasped and wept. You made my sick child smile and laugh and distracted her from her pain and misery. I have loved other Doctors but none hold on to my heart like you. To me you are and always will be “the optimist, the hoper of far-flung hopes, the dreamer of improbable dreams.” <—This. This we have in common. During the hellish weeks we were continually told Bronwyn would not live we didn’t believe it. We believed the impossible and the impossible came true. Thank-you for being there. Thank-you for helping us through.

Sincerely: A Grateful Fan

ps: If Bronwyn could have a Make a Wish wish it would have been Dr. Who themed, off to Cardiff for the Dr. Who Experience and maybe even the studio, maybe even a meeting….someday, maybe.

My Doctor Who Story

I remember seeing snippets of Dr. Who as I walked by the TV as a young adult. I was aware of Dr. Who but wasn’t interested in science fiction at the time. [It was Barry that changed my mind on SF when he rented BSG many years ago.] When the show was revised I started watching it. It was good. I liked it but my girls were young [8 and 10] and I was sensitive about them seeing anything too scary. I made it halfway through the second episode and decided Cassandra was too icky [a human stretched out like a buffalo hide] and turned it off. [Yes, I regret it.]

It was a few years later that Sinead reintroduced Dr. Who into our home. She had discovered references to it online [most likely tumbler]. I was sucked right into the 10th Doctor storyline with Rose and soon the girls were making sure I saw every episode of the new series. It wasn’t until Donna entered the scene I became a true fan. [LOVE the Dr. Donna!]

Then it seemed just when I discovered the magic of Dr. Who everything was going to change with a new doctor coming. I don’t remember exactly when I my new obsession started but it was before Matt Smith was chosen. I wasn’t really sure how this was going to work. Being a new fan I didn’t quite understand how the Doctor could change so much and still be the same character. The regeneration scene from the 10th to the 11th left me speechless and concerned that my new favourite show had just been destroyed. I needn’t have worried. I believe the 11th Doctor’s interaction with the child, Amelia Pond, helped a lot to endear him to me so quickly.

I had heard my girls and other fans talk about “my Doctor”. It seemed everyone had one incarnation of the Doctor that they especially liked, one they felt most connected with, a favourite. I didn’t have one…..until Bronwyn’s diagnosis. As I described in my letter above, Matt’s Doctor seemed to have been created just for us, for me.

I generally do not idolize actors, singers, musicians and such. They are just people doing their job to entertain us. I have had the opportunity, during Bronwyn’s health journey, to meet some famous people and although these moments were thrilling they were not emotional or life changing [except when we met Maggie Q for obvious reasons. In case you don’t know she pays our rent while we wait for a heart.]. I can’t think of any famous person whose presence would make me lose it……except for Matt Smith. Such is the connection I feel with his Doctor.

I’ll finish off with something Dr. Who and I have in common. We are both 50. We have both had to reinvent ourselves several times due to life circumstances. We have rolled with the punches and enjoyed our successes. We accept our past and have lived through tragedy but won’t let it hold us back. Our drive, imagination, dreams and optimism will continue to propel us forward into the future. Today I raise a glass to us. I think we are both pretty, damn awesome.

Taken at Easter, 2012, this picture shows the Dr. Who poster collection on Bronwyn’s hospital room wall at the Children’s Hospital in London, ON. She took the shot, from her point of view, in bed. Sinead gave her the large one for her birthday and is the poster that has followed her everywhere and now hangs in the bedroom she shares with her sister in our Toronto apartment. No matter what we were going through the Doctor and Amy were always there, ready to help.558527_10150639086436300_71722662_n

Childhood Cancer Survival: The Reality Beyond the 80%

The 80% survival rate for childhood cancer touted by governments and high profile cancer charities feels like a lie to childhood cancer survivors and their families and Rachel’s story tells why. This happens more often than not. The more I hear of medical issues most [as in 98% of] survivors face I feel a twinge of gratefulness that Bronwyn’s only issue is a heart transplant. If the only price she has to pay for cancer is an operation then she will be fine. Logically I know my optimism is naive. The majority of side effects from childhood cancer, called late effects for a reason, happen years later.

Rachel had a few good years before her effects took hold. We have to be thankful for every year, every day, of “good” that we have.

This is why better treatments are needed. Since Rachel’s treatment hardly anything has changed in childhood cancer treatment. Rachel tells the story of so many survivors. This is not the future I want for my child, for your child, for ANY child.

Please click and read: Rachel’s Story as a Childhood Cancer Survivor



Childhood Cancer Awareness Month: 8 Brutal Truths to Choke On

Why so little is being done to help our most vulnerable victims of cancer? This Huffington Post article gives clear answers.

When I began researching childhood cancer and what was being done about it I was broken-hearted. Cancer and it’s treatments, mostly adapted from adult cancer research, is so devastating on young bodies that were perfectly healthy until, by chance, cancer invaded. This article clearly states the reasons why survival rates and treatments have not improved in decades. My research matches the points Suzanne Leigh makes here. I concur with every word.This is what chemo does to our children

Gold Ribbon Craft: A Thesis

The purpose: To increases awareness of childhood cancers which will lead to more money for research to find better treatments and a cure.

The need: One in 330 children will be diagnosed with cancer before the age of 20. One in five will die within the first 5 years of diagnosis. Many more die later from relapse or side effects of treatments. Ninety-eight percent of all survivors will suffer from at least one chronic health issue and by age 45, 80% will have a critical or disabling health problem. Most of these health issues are side effects of the treatment. In terms of potential years lost childhood cancer comes second only to breast cancer. Four percent of the NCI’s research budget goes to all childhood cancers. In Canada three percent is given. Big pharma puts little research into childhood cancers as they are not profitable. The underfunding is a worldwide problem.

The method: Gold Ribbon Craft is a collection of gold themed knit or crochet patterns to help raise awareness. Gold could be anything from delicate and creamy too bright and happy too dark and splendid and it is the color for childhood cancer. I am looking for designers and yarn dyers who are willing to donate their talents for this cause. Patterns will be quality designed items that are a pleasure to knit and crochet and can be worn and thereby seen by others, designed primarily for adults with a few for children or sized for all. Although some items may be suitable to be a quick project for fundraising or charity this is not the primary goal.

Those passionate about knitting and crocheting beautiful items to spread awareness are looking for well-designed patterns they can be proud of wearing and giving.

The deadline for designs and finished objects is April 15th, 2014. Publishing date will be in September, 2014.

And that’s the plan so far…..

The idea for the gold project came to me last summer, when Bronwyn was recovering from VAD surgery. I felt the crushing need to do something to improve childhood cancer treatments so no other family has to endure what we have. You can read about Bronwyn’s story in the Knitting in a Hopeless Place posts. Here is the capsule version: Bronwyn was diagnosed with AML, a difficult to treat leukemia, on January 15th, 2012. She endured four months of intense in-hospital treatment and was cancer free but on May 16th, while still recovering in the Children’s Hospital in London, Ontario she suffered chemo induced cardiomyopathy and was airlifted to Sick Kids Hospital in Toronto where we were told she would die as her heart was too weak and her blood counts were too low to be put on life support. For two weeks the doctors and Bronwyn did everything possible to stay alive on the chance her counts would rise and they did. On June 3rd she underwent open heart surgery to have an LVAD put in. It is a small heart assist device that will keep her alive until she qualifies to be put on the transplant list on January 15th, 2014 and through the wait for a new heart.

This project is very personal to me. I signed my daughter up for torchure because it was the only option available. If you know anything about chemo you know I do not exaggerate. She didn’t go to the hospital once a week for a dose. She had 2-3 different chemos running through her central line over 2 1/2 – 3 hours every 12 hours for 10 days during the first chemo round. This is not unusual for childhood cancer treatment. She was given three weeks for her blood to recover, most spent in hospital as she had no immune system, before being put through another round of chemo lasting days. This went on for four months, four chemo rounds. Blood counts took longer to recover each time. We met a girl whose blood counts didn’t recover for months after the same treatment. This is why the doctors didn’t believe Bronwyn would live long enough to get the invasive treatment she needed to survive heart failure. I hope you never have to tell your child she may die and help her make end-of-life decisions. It’s hell. The recovery from VAD surgery, after being sick for so long was brutal but we were grateful she had something to recover from. Her first steps on July 6th, 2012 were a celebration. She was discharged on August 9th and tomorrow she will start grade 9 making her the first child in Ontario to attend public school with a VAD.

Before cancer Bronwyn was a healthy athlete. She had no heart issues. She was fit and ate a wholesome diet. She was a Highland Dancer competition
Highland Dance Competition, Nov. 5th, 2011]

and competitive curler. curling team
[Team Keetch, 2011]

She was handpicked by her coach for a team with Olympics as the goal. It has been hard to watch the team go on without her but they still wear an orange ribbon [the colour for leukemia] on their team jackets.

She is a leader camp gitch
Junior Camp Counselor at Camp Gitchigomee, summer, 2011]

and a good friend.
Bronwyn and Haylie in Bronwyn’s bedroom]

Her friends, dance troupe, curling team and kids and staff at Camp Gitchigomee love her and miss her and Bronwyn misses them. All she wants is to go back home.sleeping giant-1
[The Sleeping Giant in the Thunder Bay harbour. Home.]

It’s what we all want…..but we have a different road to travel. So here we wait in Toronto for a new heart and make the best of it. Bronwyn will go to school, Sinead and Barry will work and I will do what I can to raise awareness. I am committed to getting this collection of patterns published. I must make some good come out of our tragedy. People will say that things happen for a reason. I disagree. My daughter got cancer because we live in a world of sickness. If there is any reason to be found it is because we will create it.

I know the fibre community to be full of passion, generosity and creativity. The Knitting for Gold project is the perfect expression for it. knitter's frolic-1
The Yarns of Rhichard Devrieze table at The Knitter’s Frolic in Toronto. Rhichard has been a great support of this project, printing and handing out these Knitting for Gold fliers and talking to fellow dyers and designers about it. It so touched my heart to see he had the picture of us, taken at the Creativ Festival, fall, 2012 where we met, framed and on his table as well.]

Knitting in a Hopeless Place, ch. 3

June 3rd, 2012, 5am: The ring of my cell phone had an immediate reaction on me. In an instant I was standing in the middle of the room; phone pressed to my ear, heart pounding. I was struggling to understand what Barry was telling me. Sinead and I needed to get to the hospital right away. Today was the day. Bronwyn was getting her VAD. This was good news but it also meant her health was failing to the point that doctors were willing to call a large team of specialists in on a Sunday morning for the four hour, open heart surgery.

“Sinead! Sinead! Get up! We have to go to the hospital! It’s VAD Day! Bronwyn’s getting her VAD!” I was yelling. I couldn’t contain it. Along with Sinead I woke up the two sisters who were helping us out. Both had come, left their families and jobs, at the drop of a hat. Alexandra came from B.C., across the country and Erinn came from Thunder Bay. The other two sisters would arrive later. As Sinead and I threw on clothes and practically ran all the way to the hospital they started making plans.

The sisters had been taking such good care of us since they arrived. They cleaned, did our laundry, cooked, brought us meals and kept Sinead company, talking her out and allowing her to enjoy Toronto for the first time since she arrived. When I returned to the House on Saturday night, just before midnight, they were cooking with Sinead. They loved that big community kitchen at Ronald McDonald House and this was the perfect time to use it, when it was empty. They filled our freezer bin with meals and gave Sinead reason to smile and be happy. Our time with them was filled with with the sisters-1

Sinead, Barry and I sat with Bronwyn. No one thought about eating or even getting a coffee. No one wanted to leave. This was crunch time. Anything could happen. We waited. We waited and watched. As the hours ticked away we watched Bronwyn’s monitor. I had noticed before how the lines on Bronwyn’s monitor were not like the other children’s monitors. The other children’s lines had sharp peaks and valleys marking heart rate, blood pressure, breaths and oxygen intake.  Bronwyn’s lines more resembled gentle hills. As the hours wore on those hills became shallower until at about 1pm I turned to Barry and whispered, “If they don’t come and get her soon it will be too late.” There was a lot of equipment and people that had to be prepared before surgery. VAD Day-1

Finally, 2pm, they came! I quickly texted a sister, “We’re coming out!” We followed the team wheeling Bronwyn into surgery. The path would take us right past the ICU waiting room. As we quickly walked along Alexandra, Erinn and Tina [my close friend from Thunder Bay who has been living in Toronto for more than 20 years now] cheered and encouraged Bronwyn on. We went through a set of doors and stopped. One of the doctors told us we could go no further. I was time to say good-bye. I kissed Bronwyn and said, “I’m so proud of you. You have accomplished so much. You can do this.” Barry gave her a kiss and she was gone out of sight.

As several teams got to business on Bronwyn we joined our team of support in the waiting room. There were drinks, snacks, coffee, lunches and happy company. This was just what we needed. None of us had had a crumb to eat or a drop to drink since the night before. With no reason to leave the area we settled in.VAD Day-6
Erinn. Extraordinary cook.VAD Day-4
Tina: Devoted friend.                                    Alexandra: Creative genius.    VAD Day-7
We literally camped out. I don’t know of any pictures of me in the waiting room.

Along with the food the sisters had brought the knitting project I had requested.  A couple of months before I had seen “Good Day Sunshine” on and fell in love. I ordered the yarn but didn’t find the right time to start it until now. It is an intense pattern that requires concentration. Perfect! I could use an excuse to think about something else. I quickly declared to to be my Happy VAD Day shawl and would exclaim now and then, “Happy VAD Day!”happy VAD day-1
It is a tricky beginning. I didn’t get every far that first day.

During the next four hours we were updated by the anesthesiologist twice [who specialized in heart deficiencies], the VAD/transplant doctor and nurse and finally the surgeon. Everything went great! The VAD was in and working like a charm. There was concern that Bronwyn’s right heart would also need a VAD, in which case Bronwyn would not have been able to leave the hospital and an RVAD only lasts a few months at the most. As it turned out the LVAD compensated enough for the right heart to work just enough to do the job of getting oxygen to the blood.

We were now faced with a long, hard recovery. Bronwyn was so ill before surgery. Four months of in-hospital treatment, followed by weeks of sickness added up to a lot of time bedridden and a body sapped of health. On July 6th she took her first steps. Her strength slowly returned as she pressed on. Physiotherapy became the most important tool towards discharge. She also had to learn how to drink again. After weeks of dehydration keeping enough fluid down for the smooth operation of the VAD became an issue. Every day she strived to drink more. She wasn’t always successful but gradually the milligrams increased until she was drinking more than a liter a day.June 6
Sitting up for the first time after surgery. The black pack beside her is the VAD controller and battery pack. July 16
Physio, July, 16th.

On August 9th Bronwyn became the first child to be discharged from Sick Kids with a VAD. At first it was a lot like playing hospital in our room at RMH. Every night she pushed an NG tube down her throat which was then hooked up to a pump for overnight feeds. These feeds made up for the extra fluid and nutrition she needed. A nurse would come every day to flush her central line and change the dressing and observe me change the dressing on her driveline sight. The equipment and medical supplies required cluttered up our room. As I learned how to do the flushing the nurse visits became twice a week. Within a month Bronwyn was through with the overnight feeds and was drinking Ensure three times a day instead along with meals. CNTower
Bronwyn at the CN Tower on August 22nd with her friend, Neena, from Thunder Bay.

By November she was done all of that, eating full meals and drinking two and a half liters of clear fluid a day. Her central line had been removed. We had been moved into an apartment at the House. For the first time in ten months Bronwyn had a room with a door….and so did Barry and I. It was wonderful. It was the closest to normal we had had in months. We had our own kitchen; no more cooking downstairs. I noticed Bronwyn’s health and food intake improve immediately. Reluctantly she started classes in RMH’s private school. Not only had she missed a lot of school but the chemo and trauma had done a number on her knowledge base. She had forgotten the simplest things like how to tell time and count money. It was scary. By the end of the first day she felt a lot better about it. Even though the kids were younger than her she enjoyed the social interaction and learning. The teachers were great. They understood her condition and helped her recover a lot of center field trip-1
November 28th, RMH School field trip to the Ontario Science Center.

While Bronwyn was in class I started my research into childhood cancer and what was being done about it. It turns out not much. I could only handle small amounts of information at a time at the beginning. It was hurtful to discover that so little has been done to find better treatments that didn’t cause so much harm to a child. Bronwyn drew the short straw on a rare side effect but most children who survive suffer some form of chronic condition from cancer treatment and only a few forms of childhood cancer have decent survival rates [60% and more]. Most have dismal rates of less than 50% to even 0%. Many of these rates haven’t changed in decades. Compare that to many adult cancers. New treatments and drugs are being developed all the time. Childhood cancer research is like the poor country cousin that must depend on hand-me-downs from the research of other cancers to have any chance at success at all.

Thus my drive to do something…..anything. The childhood cancer awareness movement has to start somewhere. It barely existed at all when Bronwyn was diagnosed. We had never heard of it. Never knew that gold was the colour for it or that September was the month for it. We all know what pink is for and that October is breast cancer awareness month and treatments and survival rates have improved dramatically. Clearly the formula for more money for research leading to better treatments is awareness. But what can one person do? What can I do? Asking this question is what has led to the development of the Knitting for Gold project. It’s what I can do. I find myself starting this project in the midst of a new flurry of activity on childhood cancer awareness like never before. Social media is driving the education and action on this critical issue. Organizations like The Truth 356, People Against Childhood Cancer, The Gold Ribbon Campaign, A Day of Yellow and Gold, Huffington Post writer, Jonathan Agin and many, many others are helping to raise the banner for our children.

In this blog I will chronicle my journey with this project as well as more stories about Bronwyn’s journey and the need for childhood cancer awareness. …….and there will be knitting! I finished the Happy VAD Day shawl and other projects since the surgery that saved Bronwyn’s life but those will be stories for another day. I will end the chapters on Bronwyn’s story with this epilogue: Bronwyn and her family have relocated to a two bedroom apartment within walking distance of Sick Kids hospital as she waits to be added to the heart transplant list on January 15th, 2014 and then a heart. Sinead graduated from high school with honours and is taking a gap year with her family before diving into university. Barry continues to work in Oakville. They all dream of the day they will return Thunder Bay and do their best to create a new life, post childhood cancer.sinead18th-3

Knitting in a Hopeless Place, ch. 1

January 15th, 2012: Bronwyn was 14. I was 48. We were in a hospital room in the Children’s Hospital in London, Ontario.Jan. 14

We had been airlifted from the hospital in our hometown, Thunder Bay, Ontario two days before because a routine blood test run by our GP found reason for Bronwyn to be tested for leukemia. We had been ripped out of our lives, literally. I was at work on the morning of the 13th. Bronwyn was at a curling competition watching her team play without her as she was too weak from a persistent cold but was determined not to miss it. I got a phone call from the hospital telling me they were waiting for Bronwyn, I assumed, to do tests. Our GP had  sounded baffled on the phone the night before while he stammered out to me that my daughter need to be tested, [I later discovered why. A GP will discover a case of childhood cancer once every ten years on average. Usually it is a specialist or ER doctor] so I was expecting that call just not so soon with such an urgent message to get to the hospital ASAP.

By the 15th we had been at the Children’s Hospital for two days the the urgency of the situation had worn off. The only symptom she had was a general weakness. I was convinced the tests would show something else was going on like mono, which is not a great thing to have but when compared to cancer, fantastic. We knew there would be a test of some sort on the 17th. That is what we were waiting for, for Tuesday. Barry and Sinead would be with us by then, taking time away from work and school.

Jan. 15: Moments before

Bronwyn and I were enjoying a visit from relatives who lived in the area when the doctor walked in to Bronwyn’s hospital room with two colleagues saying they had a diagnosis. I was stunned. I wasn’t prepared. I was waiting for Tuesday.

It was cancer. Acute Myeloid Leukemia. AML.

I clutched my knees and bent over like I had been punched in the gut. I sucked in air and looked up at Bronwyn sitting in the bed. She was wearing a new pair of bright, pink, plaid pjs with a lost look of pain on her face. I felt tears stinging my eyes but it was not the time to break down. There was more to hear from the doctor. I went to Bronwyn, put my arm around her and pressed my forehead to hers. It was just a moment, a few seconds, but in that time we bonded, became one in the fight. We turned to the doctors to face, together, what was to come.

There are no words to fulling communicate what kind of hell chemo is. You sign your kid up for torchure, because it is the only option given, and you roll the dice. Will it work? Will it cripple your child? Will it kill her? All were possibilities. If the cancer doesn’t get her the chemo sure will try.

I rode on a wave of determination and shock that pulled me along for the first few weeks and then Bronwyn’s hair started to fall out and fall out fast! Bronwyn didn’t care. On the day of diagnosis she declared she didn’t like her hair anyway. I didn’t really care about her losing hair either. I had always had a casual attitude towards hair and the girls knew they could do whatever they wanted to it. Hair grows back. It can be fixed. Cut it. Dye it. Shave it. I don’t care.


But, Bronwyn’s hair on her pillow, on her brush, on the towel, in her hand, meant this was real. This was really happening. My daughter had cancer. Life had stopped for it. The past meant nothing. The future was a blank slate. The present was a nightmare and I couldn’t escape it anymore. It. Was. Real.

I did my best to hold myself together for Bronwyn. She wasn’t falling apart therefore I couldn’t either. So I had a breakdown in the large, public dining room of Ronald McDonald House over butter. Barry sent me to my room. (In a warm, loving way)

(The Clap)

A package had arrived from my sister a week earlier with a skein of Handmaiden wool, Ottawa, in a blue-green variegated. I dug it out, pulled up Clapotis on my laptop and cast on. With every stitch I felt the tension slowly drain away. Life looked a little more manageable with yarn the colour of calm slipping through my fingers. That scarf became my best friend. I carried it around and pulled it out every chance I got which isn’t as often as you might think. Helping your child through chemo is demanding and stressful to the point of paralyzing. It took a month but it got done.

On to the next project, a shawl

memories of home wrap-8
(Memories of Home Wrap-Me-Up)

and then another one


and another.

(Hunny Bee Comfort Me)

By the time I was finishing the last few rows of the Honey Pot shawl Bronwyn was done four months of treatment, most of it spent in the hospital. She was recovering from from her last round of chemo when she suffered heart failure…… as a result of the chemo. She was airlifted to Sick Kids in Toronto with 20% heart function and low blood counts. She was cancer free and dying. A new chapter in her journey was just beginning, a chapter for another post. Knitting had got me this far and it would continue to comfort me through hopeless times.