After waiting 18 months on an LVAD Bronwyn is, finally, on the heart transplant list. And so a new chapter has begun.
After waiting 18 months on an LVAD Bronwyn is, finally, on the heart transplant list. And so a new chapter has begun.
It was all over the news. A teenage girl, dying of inoperable brain cancer, recorded a cover of Katy Perry’s “Roar”. After it went viral Katy Perry, herself, responded with a video message. We all were so touched by Olivia’s sweet voice. We loved that Katy reached out ……. and then we were all devastated when it was reported that Olivia was gone. Lovely that Katy tweeted about her sorrow at hearing the news. The simple truth about this Simple Girl is Olivia died because of the lack of childhood cancer research. Nothing could be done for her. Her doctors knew her cancer was inoperable from the beginning.
Just days before she died Olivia’s parents posted this video of the song Olivia wrote. I was stunned at the haunting beauty of Olivia’s voice and words. Please listen…..then pass it on. This is the song Katy Perry and the rest of the world need to hear. When you are done listening to Olivia’s last song ask yourself this: How many beautiful children have to die before childhood cancer research becomes a priority?
Please donate to the Liv Wise Fund in Olivia’s name to support research into childhood brain cancer.
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.
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
[Highland Dance Competition, Nov. 5th, 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
[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.
[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.
[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.]
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 love.
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.
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.
Erinn. Extraordinary cook.
Tina: Devoted friend. Alexandra: Creative genius.
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 knitty.com 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!”
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.
Sitting up for the first time after surgery. The black pack beside her is the VAD controller and battery pack.
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.
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 information.
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.
May 16th, 2012: Bronwyn was on a flight but not for home. She was being airlifted to Sick Kids Hospital in Toronto. Bronwyn was now 15, having celebrated her birthday in March with the only visit home she had had in the last four months. Just days before the 16th we we had been looking forward to go back to Thunder Bay. She was so near the end of treatment. Now all that was forgotten as Barry and I sped towards Toronto down the highway. Just before we said goodbye to Bronwyn in ICU in the Children’s hospital in London that morning the doctor told us there was no room for us in the helicopter and Bronwyn might not make it through the 45 minute flight.
Despite the fact that it took Barry and I at least two hours to pack up necessities from our Ronald McDonald House room in London and drive to Toronto, we arrived at Sick Kids just as Bronwyn did. The first thing we were told was she would die. Her heart was too weak and her blood counts were too low to install any life saving device like ECMO. After so much chemo it would take weeks for her blood counts to recover and she didn’t have weeks. This news sounded impossible to our ears. Bronwyn had come through so much in four months. Is this really how it would end? Was it all for naught?
If you spend any time on the second floor of Sick Kids Hospital, the ICU floor, you will often see distraught parents. Beyond the pale skin and black bagged eyes of most in the hospital the parents here are often completely overwhelmed. It is common to see adults sitting in chairs, leaning against walls, aimlessly walking while crying. Some cry silently, tears streaming, but most are beyond any self control and weep openly, audibly, muttering distressed questions of why that are never answered and declarations of how unfair the situation is. On May 16th that was Barry and I. I was completely undone. I don’t remember details just blurs of time in the hallway crying, holding on to Barry, pounding his chest, a nurse fetching us chairs because I didn’t have the strength to stand anymore.
During brief moments of clarity I made phone calls. I called one of my sisters and told her Sinead needed to be there “today!” Sinead was back in Thunder Bay, staying with friends as she finished grade 11. I don’t know what went on to get her there but Sinead arriving at 9pm that night was the only bright spot of the day. For two hours before her arrival I was on a bed in a family room [little bedrooms on the ICU floor for parents that require a key] in a fetal position trying to eat a banana, the only thing I had eaten all day since the half a bagel I had before being informed that Bronwyn was in distress. I felt bad that I had left Barry and Bronwyn but I literally had no strength. It took everything in me to get to that room and I didn’t want Bronwyn to see me like that.
The hard part was telling Sinead what was going on. She, of course, suspected something bad but it was like digging at a stab wound to tell her Bronwyn could die. We cried, pulled ourselves together and went to see Bronwyn. Even though she still was critical her condition had been stabilized. We felt pretty good about her for the next couple of days, believing she was in recovery mode. The chemo just had to work its way out of her body and her heart could recover. Well, it was the best case scenario given to us and we grasped it.
Bronwyn was hooked up to practically every IV heart med they had and was on CPAP, a mask on the nose that forces oxygen into the lungs, doing some of the work of breathing, thus taking pressure off the heart. They kept her dehydrated for the same reason. They measured every liquid that came out and went in, including IV meds. She had to have less fluid going in to her body then going out.
Then came the Shitty Day, as we have come to call it. May 21st, the day the doctors told us again that Bronwyn would not live. Her condition was not improving, in fact she was becoming more dependent on the meds. They had tried to lower them to see how she would do but ended up increasing them…..and increasing them. And then there were the persistently low bloods counts. She had no white bloods cells [to fight infection] and very low platelets [for blood clotting]. The doctors were doing all they could. We were told, “Either you tell Bronwyn or we will.” She had to know. She was old enough to know and make end-of-life decisions.
I felt destroyed but something inside me rose up and I knew instantly I could do it and what to say. It was like everything I had ever done, experienced and learned, everything I had become was for this moment. This was the moment I had been born for.
I took Bronwyn’s hand and looked into her brave eyes, now full of worry, and said, “You know how sick you are. You can feel it.”
“Your heart is very weak and you blood counts are so low that the doctors can’t operate and put you on life support.”
She knew exactly what I was talking about.
“They are telling us you will not live. They are saying your blood counts will not come up soon enough to help you because you have had so much chemo.”
Tears welled up. Her face went red. We were all crying together. Barry did what he does best and pulled out his camera. He wanted to capture this moment. It might be one of the last with Bronwyn. We just didn’t know.
I told Bronwyn her birth story, how happy we were that day, how wonderful life had been with her, how much we loved her and that 15 years with her was just not enough.
Suddenly Bronwyn stopped crying. She became very still and quiet. A peacefulness filled the room. Bronwyn looked up at me and started comforting ME.
“It’s ok, Mommy. It’ll be ok Mommy.” We were all taken aback. Her strength and caring for others was breathtaking. Weeks later Bronwyn told me what happened in that moment. She said she heard a voice in her head, a male one, not her own, telling her, “You will not die from this.” She knew from that moment on she needed to do whatever was necessary to get through this.
And she did! For the next two weeks her health remained status quo for the most part. How she dealt with the pain, weakness and dehydration amazed everyone. She devised ways to satisfy her body’s craving for liquid without breaking the rules. She always had a wet washcloth in her hand and would rub her bald head and face with it [and never sucked on it despite the nurse’s expectations. I had to remind the nurses more than once that Bronwyn was 15, not 5, and not interested in endangering her life]. She would ask for a bowl of water to put her hand in. She would exhale like she had just lowered herself in a jacuzzi when her hand hit the water and would splash in it like a toddler. She then asked for a spray bottle. It became her best friend.
For two weeks Barry and I never left her side. We took turns sleeping at Ronald McDonald House Toronto, the other sleeping in a chair by Bronwyn’s bed. Cots are not allowed in ICU. They take up too much room and could hinder access to Bronwyn in an emergency. Sinead came to the hospital in the afternoons and evenings. It was tough but we found ways to enjoy each other’s company. A nurse made a card holder for Bronwyn so we could play Sticks and Pennies, her favourite card games. Friends and caring strangers sent packages
and uploaded videos.
It was the most difficult two weeks of our lives but we still found happiness, laughter and smiles.
On May 30th I woke up at the House, got out of bed and stepped on something. I looked down. It was clothes. I looked around the room as if seeing it for the first time. There were clothes, suitcases, towels and I don’t know what-else everywhere. I realized we were not coping. I had no idea how Sinead was coping, what she was doing or what she was eating…..I didn’t know what I had been eating. It was all a blur. I called one sister, she called another and another. They would be there ASAP. The next night, as they were arriving, Barry and I were taken from Bronwyn’s side and told again that she would not live. Even though her blood counts had begun to rise it was not quick enough. In their experience blood counts will fluctuate for weeks, even months after the kind of chemo Bronwyn was given. She had hours to days left. We knew Bronwyn’s health was failing. We had become experts at watching the monitors and our concern had been growing all day.
I spent the night with Bronwyn. The next morning blood work was done before more than a dozen doctors surrounded Bronwyn’s bed. They had just had a meeting about her. Barry and I flanked her bed and held her hands. The doctor who had told us the night before Bronwyn would not make it was sitting in front of us with the news. Bronwyn’s blood counts had jumped overnight well into the normal range. They would operate!
The VAD: a ventricular assist device is a machine that works for the heart. Bronwyn would be getting an LVAD, a turbine pump inserted into the left side of the heart, attached to a battery pack and controller outside the body by a driveline. This VAD is small, portable and a patient can actually leave the hospital with one. They are built to last years if necessary. It was the perfect solution for Bronwyn. She would not be eligible for a heart transplant until two years post cancer diagnosis. [That’s right, she has to be cancer free for two years.] AND Bronwyn would be the first patient to leave Sick Kids with one if all went as planned.
The doctors still wanted to give Bronwyn every chance to recover on her own. The less invasive treatment there was the better. The VAD would be installed only if absolutely necessary.
My knitting was kept close at the beginning of these two weeks.
Quite often in my lap.
Quickly thrown aside when Bronwyn was awake or something was being done to her.
Just before we left London a package arrived from knitpicks.
I had plans for it and found a way to wind it into a ball on the medical cart in Bronwyn’s room.
After the Shitty Day there would be no more knitting. My mind was too consumed. It wasn’t until VAD Day I found the release to pick up my needles again. Stay tuned for chapter three.
Classic cables with a Modern twist
Stranded in Wool
Shawana Hackney. 17. Senior at RECHS. Mr.Smith's English Class
Collecting skills and ideas for a home filled with useful items, made from scratch!
Spreading Hope...a hat at a time.
A bucket list blog: exploring happiness, growth, and the world.
I knit. I spin. I live. I write about it.