Kaidan’s Story

We started to notice that Kaidan wasn’t feeling well the same night he was given his first round of immunizations, so it was tricky to know what was going on. I called Health Link twice that first night, saying he was so lethargic and crying so much. They assured me that it was just a reaction to his immunizations. The next day I phoned our family doc and made an appointment but he couldn’t find anything wrong. He chalked it down to an ear infection and gave him antibiotics. My mama instinct went into over drive, saying, “No way. Don’t give him that. He hasn’t got an ear infection. Something is very wrong here!” We had a three-year-old son Josh at that time, and he’d had many ear infections in his short life so we knew the symptoms well. Our bouncing baby boy of six months went from the happiest baby we’d seen to a crying whimpering little guy with zero energy. At this point, he just cried all day long and could barely lift his head.

We had been using cloth diapers and he’d always had this patch of dry skin that used to irritate him on his upper thigh. He’d always scratched it a bit. I noticed that it was bruised where he’d been scratching in the middle of the night when I’d changed his diaper. I called my mother-in-law in England first thing in the morning to ask her if it was possible to scratch a bruise and she said no, it definitely wasn’t. She asked how he was and what he was doing then. I said that I’d just woken up and that he was still sleeping. She said that I should check his skin on his belly under his sleeper for tiny dark dots. While she was still on the phone I did and found that he had these tiny dots all over! She told me to get him to the hospital right away, that he had petechiae– small red or purple spots on the skin caused by a minor bleed from broken capillaries.

I dropped Josh off with my husband Alastair (he was working on a house that we renovating) and picked up my friend Lisa because I felt too scared to face this on my own! We drove to the Foothills Hospital initially. I had never had a sick baby before and just thought hospital – not children’s hospital. They took one look at Kaidan and said, “Get him to the Alberta Children’s Hospital right away; you have a very sick little boy there.” It was awful. I was terrified. I couldn’t get there fast enough!

We went to the old children’s hospital and there was a massive line up. I said, “I think my son has meningitis. Please let me to the front of the line.” Everyone did! When the triage nurse saw him, they took us right into a room. Within a few minutes, he had an intravenous line in and what seemed like a million doctors around him. They wouldn’t tell us anything. They kept asking me when my husband was coming. He was on his way. It took him a long time it seemed! They had social workers there, on the ready, just waiting to tell us the awful truth.

Finally, after what felt like a lifetime of waiting, Alastair arrived, as well as our group of friends that were our family. We were told that Kaidan had infant leukemia. In that moment I felt like our world was ending and, in a way, it did. At least our old world did, the only one we knew.

Kaidan was given a 50 per cent chance of survival and we were told that if we hadn’t brought him in when we did, that he wouldn’t have lived more than three more days! Such a shock! As our new normal started to settle in we began to move forward. Alastair’s parents flew in from England to help us come to terms with our new lives. We were told that we’d become permanent residents of the children’s hospital for the next year, while Kaidan went through a grueling treatment of chemotherapy at just six months!

It was definitely a hard time, especially for Josh, who had his whole world ripped apart. He was used to me being around all the time and suddenly I was gone and so was his dad. We ended up getting a nanny who we just loved and who was absolutely amazing for Josh! We got into a routine, where one of us would sleep at the hospital with Kaidan and one of us would sleep at home with Josh. Funnily enough, if I was at the hospital, Kaidan woke up all night long to breastfeed and if it was Alastair, he didn’t wake up once, even though I’d pump my milk for him each time, just in case!

There were quite a few emergency situations where things went terribly wrong for Kaidan and his treatment. But it felt like a lot of the time he was doing really well! We did end up being able to bring him home for a few days at a time, which at first was terrifying for us! Having to give him all of his medication on our own was really overwhelming at first! Eventually, even that became normal.

Josh ended up going to camp with Kids Cancer Care. At this time he was just three years old and just loved being with people! We were living quite secluded lives, afraid to mix with the public and risk bringing any sort of sickness back to Kaidan. It ended up being good for all of us! We met other parents who were further along in their journeys, who had stories to share, both good and not so good. I remember vividly, picking Josh up from camp one day, with Kaidan in my arms, and talking to a lady named Brandi. I asked her which kid was hers running around the playground and she said “That one, that one, that one and that one!” I was pretty shocked at how many kids she had! I then asked her which one had been sick. And she said that sadly, he didn’t make it. I was shocked and saddened to my core! She seemed so peaceful and happy. How was that possible? We chatted for a few more minutes and then we parted ways. Who knew what a big part of our lives she’d one day become. When the unthinkable happened eight months later, I searched for that lady Brandi!

About 10 months into Kaidan’s treatment, his doctors said to us that we was doing so well. He’d made it through the hardest part and we were in the maintenance phase. What did we want to do with our lives? It was time! We had sold our yoga studio in Canmore about a year and a half before and had always regretted it. We had always wanted to build another one and it was then that we decided to look for a space in Calgary to build a new one! We actually had Kaidan out on day passes when we went looking for locations. When we saw the space in Mission, on 4th street, next to a Lululemon store, we knew we had found the perfect spot! It all fell into place pretty quickly and Alastair began turning the former dental laboratory into Yoga Santosha! Although at the time, we hadn’t quite named it that! Santosha means contentment and after Kaidan passed away, we realized that that is what everyone wants in life, to feel content. We weren’t sure if we could ever feel that way again, but we sure wanted to!

As Alastair finished up the demolition over the next couple of months, things with Kaidan seemed pretty stable. Kaidan was home for about a week when I noticed that he was feeling unwell. He threw up, so it was a one-way ticket back to the hospital for us. It was determined that he had a bacterial blood infection and we were all pretty nervous!

He had klebsiella pneumonia – one of the super bugs. Over the next five days, he just got worse and worse. It was terrible and very scary! He just kept getting puffier and puffier until he was just huge around his torso! His last night was unbearable. Oddly enough, his blood samples had come back clear, so his doctors believed he was going to get better and that he would turn a corner. I could tell that that wasn’t the case. He was barely responding and his heart rate was all over the place. It was a scary night with him, with no doctors, as that last night there was no over-night doctor around. He held on until Alastair got there in the morning. He held up his arm to wave to him and then let go. The dreaded code blue. It was absolutely devastating to say the least. The doctors tried to save him for the next four hours but there was nothing else they could do in the end.

Eventually an autopsy determined he had Waterhouse-Friderichsen syndrome (adrenal gland failure) and there was no chance that he could have survived that.

To say we were crushed and devastated beyond repair would have been an understatement. We were definitely in a state of shock and disbelief. We never saw it coming, not ever. Leaving the hospital without him was almost more than we could bear. In fact, we just couldn’t leave until they finally said that we’d have to, hours and hours after he passed away.

We very slowly began to get our lives together again with the help of our beautiful son Josh! I truly believe that he saved me! Without him needing me to get up each day I’m not sure I could have! At four years old he became an only child again and my best friend!

We are incredibly grateful that we were able to add a couple more children to our family and both of them helped to heal us as well. Kaidan will never be forgotten, never be replaced and always in our hearts!

We feel that the friendships that we’ve made at Kids Cancer Care have helped us in so many ways! We’ve been to Bereavement Camp as well, which was an incredible time to remember our beautiful son and to help other people along in their own journeys. It’s an amazing thing to be with people who really get what you are going through. This is why Kids Cancer Care has been so helpful during treatment and beyond!

– Candace, Kaidan’s mom

Diagnosed with cancer at three months, Finn spent the first year of his life fighting for it. He’s finished treatment now, but he’s facing a lifetime of late effects. Monitored regularly for tumour growth, Finn also sees a battalion of medical specialists — from neurologists and geneticists to endocrinologists and occupational therapists — to manage the after effects.

Thank goodness for Great Clips hair salons. Their Back to School Buzz during Childhood Cancer Awareness Month is turning haircuts into fundraising and here’s how you and your kids can get involved.

Finn and his brother Bodi have great hair. They’re only five and three, but they like their hair a lot. Hair is important in the van Galen household, mostly because Finn lost all of his hair during cancer treatments. And little Bodi? Well, he just likes to keep his hair long. So when the two boys agreed to go to Great Clips for a trim, it was a big deal. They were willing to lose some of their locks because they wanted to help other children with cancer.

Finn and Bodi were among the first to donate in the Great Clips Back to School Buzz, a fundraising campaign that runs August 23 to September 30 during Childhood Cancer Awareness Month. When clients donate three dollars or more at one of their participating salons in southern Alberta, they also receive a five dollar coupon off their next haircut.

Jennifer Mooney (general manager of Great Clips) and her sister Lisa Inman (a Great Clips franchise owner) are the brains behind the six-week fundraising campaign.

“These past few weeks have been busy!” says Jennifer. “It’s wonderful to see how generous people are and how willing they are to support children with cancer. We’re really pleased with the campaign and so happy to do what we can for children like Finn.”

Thanks to generous supporters like Great Clips, Kids Cancer Care is able to give kids like Finn regular breaks from their demanding medical routines at our camp and outreach programs. Finn has been a regular at our camps since his parents Inge and Martjin first attended Family Camp when he was just an infant, still on cancer treatment. Last summer, Bodi went to summer camp for the first time. He loved it too.

“Kids Cancer Care is fun,” says Finn, when asked why he chose to support Kids Cancer Care through the Back to School Buzz.

The boys’ mother Inge has her own reasons for supporting the foundation. “Kids Cancer Care truly cares. The support we have received from day one has been incredible — from a filled freezer of food during treatment; to family camps, where nurses cared for Finn, so we could get a break; to exercise programs tailored to help him manage the late effects of his treatment; to parent education programs and more. At Kids Cancer Care, we have found a community of support with people who get it.”

Great Clips also has its reasons for supporting Kids Cancer Care. For years, their hairstylists have volunteered their services at our Shave Your Lid for a Kid® fundraising events. Spearheading a six-week fundraising campaign seemed like the next best step for sisters Jennifer and Lisa.

“Over the years, Great Clips has created a very special relationship with Kids Cancer Care and we have become very passionate about the cause,” says Jennifer. “Lisa and I decided we wanted to do more. By launching the Back to School Buzz during Childhood Cancer Awareness Month, we hope to bring attention to Kids Cancer Care, while raising money to support Alberta families fighting childhood cancer.”

If you’re in need of a haircut this month, Great Clips has a salon for you. There are 23 salons partnering in the Back to School Buzz for Kids Cancer Care. With a donation of three dollars or more, you’ll receive a five dollar coupon off your next haircut. It’s almost like you’re getting paid to give. To learn more, click here.

Thank you Great Clips, for pulling out all the stops to support children with cancer!

I have tried multiple times to write and share Ella’s story. I struggle partly because I feel this is her story to tell, not mine, but the other struggle is I know that by the time I finish writing this, there will be more to add to it. We are anxiously waiting to hear when Ella’s next brain surgery will be. We know it will only be weeks away. The outcome of this surgery has so many possibilities and we know this because she has already been through three within the last year. That is not including the other surgeries. That is just her brain surgeries. At the young age of three, the number of brain surgeries she will have is more than her age.

Ella has always been such a strong, determined little girl. She reached all her milestones well before anyone else in any of her baby classes. But the term little really is the key word. At just five months, she had been referred to a pediatrician because our family doctor was concerned that she just wasn’t gaining as well as she should be. She went through every test at the time to rule everything out. She even went to a neurologist because of some shaking she was doing. Every test came back okay. Back to regular life and the doctor appointments began to slow down to just her regular checkups.

Once, when she went for bloodwork at the Alberta Children’s Hospital, something in me had a calming feeling take over. I vividly remember thinking, “This is home.” Seeing the oncology sign gave me such a strong sense of home. Such a strange thought to have at the time.

Looking back, we now note that she would wake up not being able to walk straight and shake. Blood sugar, we were told, was the reason. Around the age of two, when she was really tired her eye would turn in, but it never stayed that way. It seemed as though you could “snap” her out of it. Sometimes she even thought she was being funny doing it. She would fight each and every time we put her into the car seat. Even on really hot days, she would say she didn’t want to get in her car seat because her head hurt. On the first hottest day of the year, she threw up – but we figured she just hadn’t drank enough fluids at daycare. Some days, she would throw up in the mornings, but feel better afterwards.

When her sister was born, Reese had to stay in the Neonatal Intensive Care Unit as she needed to be monitored. It was then that Ella’s eye turned in and stayed in this time. The day I was finally released from the hospital, after some complications during labour, we decided to take Ella to her optometrist. He sent a referral home with us, telling us to go to the emergency room. We went straight to the Alberta Children’s Hospital and while we were seeing an emergency doctor, we received a call about a referral to an ophthalmologist, who was just on the second floor above us. The ER doctor was fairly certain this was just a lazy eye, as it is common at the age of two for this to happen, but he sent us upstairs just to be certain. All the tests you could think of were done on her eye and nothing seemed unusual. They also confirmed that it was just a lazy eye and we were to start patching her good eye and come back for routine check-ups to see if there were any improvements. Ella was doing well at all follow-ups and was even showing some small improvements.

That’s when Ella started waking up in the middle of the night, saying her head hurt. She would say she needed a towel on her head to make it feel better. One day, while visiting family, she said she needed Aunty to give her medicine. Aunty gave her water in a medicine cup and Ella went back to bed saying her head was all better. Migraines run in my family, so we were not too concerned, but we did take her to her family doctor to see if there was anything we could do. She asked us to monitor it and said if she continued to wake up complaining of her head hurting, to come back the next week. I took her into the doctor the next week. The doctor gave me a letter to give to the emergency doctor. She said, “Let’s just give us some peace of mind.”

It didn’t seem like it a big concern and since her sister Reese was having at least four appointments a week at that time, we decided we would bring Ella in the next day. The next day, June 5, 2017, I took Reese for her four-month follow-up and Lyle took Ella to the Alberta Children’s Hospital. They gave Ella a CT scan and while I was at Reese’s doctor appointment, they were waiting on the results of her scan. It was taking hours and Lyle and I both figured the scan was okay. We figured they were seeing the high priority patients first. Little did we know that it was taking so long because they were getting a team of doctors together to speak with Lyle.

That day, Reese finally got the all-clear. We no longer had to continue with so many medical appointments. That’s when I received a text from Lyle, saying, “Call when you can.” He then called and said, “Just get to the hospital.” That’s when I knew something was wrong.

On my drive there, Lyle was able to leave Ella’s room and call me back and tell me the words that you never think you will ever hear. “They found a tumour in her brain.”

I wish I could recall the rest of the day and tell you exactly what happened, but I had become numb. Everything was a blur. When I got to the hospital, Dr. Gallagher came into see us and so matter of factly told us that Ella was not going to be going home today. Instead, she was admitted right away to unit 3. She needed to be monitored very closely every hour, day and night. She was scheduled for an MRI the next day (Thursday) and was scheduled Friday for a surgery to try and remove the tumour. We didn’t leave Ella’s side after that. Family all came and we were all taking in as much as we could, taking pictures and videos to try and have as many memories as possible in case the unthinkable happened.

“There are things far worse than death.” This statement still haunts me today. It is a statement someone said to us, when preparing us for her surgery. Ella’s tumour was the size of a lemon, we were told, and it originated in her brainstem. The brainstem is responsible for basic functions such as breathing, heart rate and body temperature. There was no cerebral fluid in sight on the MRI, severe hydrocephalus, an accumulation of cerebrospinal fluid (CSF) within the brain. The tumour was that large, the major artery in her brain was nowhere to be seen either. They wouldn’t know what to expect until they were able to get her into surgery. This surgery was emergency surgery; not just to remove the tumour, but to save her life.

Friday was the longest day of our lives. The hospital floors were worn down just a little bit more from us pacing back and forth for nine hours. We received the page that we were finally able to go see Ella. Lyle and I ran as fast as we could through the doors of the Pediatric Intensive Care Unit (PICU). I don’t know if anything could have prepared me for seeing my little girl the way she was that Friday night. She was hooked up to every machine and had an external ventricular vein (EDV) – which is a little tube draining cerebrospinal fluid from the top of her head. Intravenous (IV) tubes were everywhere. She was fighting everyone. No one could calm her down. She didn’t sound like herself. The nurses immediately saw me and asked me to sit down and hold Ella to try and calm her down. I was unsuccessful. I can’t even begin to describe the feeling you get, seeing your child in so much pain and being so helpless.

We also found out that they were only able to do a partial resection of the tumour. The team of surgeons felt they could not get any closer without doing damage. Ella’s tumour is considered incurable. Due to the location, they cannot fully remove it. It will always be there and it will always grow. We were told this is the worst spot for a brain tumour to be.

Ella was fighting so much, that it would sometimes take up to six adults to hold her down. The EDV was draining fluid, so if she moved from her position it would have to be adjusted. Otherwise she too much pressure would build up and would cause more pain. Every time she moved, we would have to clamp her until she calmed down. This would also build up pressure in her brain. It was a no-win situation. I am beyond thankful that she is such a strong girl, but this time she was fighting the wrong fight. She needed rest. She needed to heal.

Over the next few days, Ella started having difficulties breathing. She was only scheduled to stay one night in the PICU; however, because of the complications, she stayed a full week before moving up to unit 3. There was so much swelling in her throat that she needed help to just breathe. At that time, they did not know if the swelling was due to damage caused during surgery, removal of the tumour, or just from having multiple breathing tubes switched out during her operation. While in the PICU, she also caught an infection, so was put in isolation.

Imagine being 2.5 years old, having to be tied down and slightly sedated constantly so you don’t rip out your EDV or your breathing tube and only seeing doctors in yellow gowns and masks. I’ll never be able to erase that fear from Ella’s mind. She also needed a feeding tube, which she ripped out. After that she just didn’t eat. The fear was if another one was put in, she would just rip it out, or confuse it with her EDV, and potentially rip that one out as well.

We were told almost right away to be prepared; Ella would need a shunt – to help drain her fluid due to the location of the tumour. But they were going to give it some time to see what time would do. She then caught a severe case of pneumonia on top of the other infection she had. Whether or not she needed a shunt would have to wait until that was over. Throughout the next week, Ella was still having outbursts where it would take many adults to hold her down. Sometimes it would last 30 minutes and sometimes hours. This we learned was called posterior fossa syndrome. Posterior fossa syndrome has a whole range of symptoms, which can include problems with coordination, speech, swallowing, speaking and emotional difficulties which include mood swings, agitation and angry behaviour.

During one of her outbursts, they realised that the stitching from surgery had opened up and her cerebral fluid was leaking. It was all over her pillow. Even with pneumonia, she needed a shunt put in right away.

Off she went for her second brain surgery. During that surgery, once her skull was opened up, they could see she was so badly infected, they could not risk putting a shunt in. The risk for meningitis was too high. Instead they “washed” Ella’s brain and tried to get it as clean as possible. We would have to wait for her to recover from her infection before they tried again.

Knowing that Ellas was going to need another surgery, she was also always NPO – nil per os, a Latin phrase that literally translates into English as “nothing through the mouth.” She wasn’t able to eat or drink or have anything by mouth. She had constant IV fluids, but she eventually needed TPN, which is total parenteral nutrition, a way of feeding patients all the essential nutrients they need intravenously. She needed nutrition. She had gone far too long without nutrients. As a 2.5-year-old, she was wasting away before our eyes. She had been poked with bloodwork so many times – daily – and needed TPN for so long that it started taking a toll on her veins and her veins started failing. The TPN ended up leaking out of her veins and causing so much damage that a plastic surgeon had to come look at her poor arm, which was double the size of what it should be. It caused her so much pain, she would just cry from then on anytime she thought you were getting close to her to try and “poke” her. She became obsessed with band aids, but the hospital ones just wouldn’t do. We would have to bring some from home every day. Paw Patrol, Princess, Avengers – anything that wasn’t from the hospital. She would put them all over herself. It was the only way she would allow pokes.

It was around this time that she was finally allowed to start eating food. There was still so much damage to her throat that a bit of yogurt made her aspirate. She had to learn how to eat all over again without choking with each bite. Things were so bad that even when we tried to get her to finally brush her teeth, she would aspirate with that. She had to start therapy just to help her eat. It took about six months post ops for her to start gaining confidence in her eating again. Even now, depending on what she eats, she can still cough and have some problems.

Finally, after three weeks in the hospital, that’s three weeks of blood tests and pokes every day and being in isolation, we were given the OK to have her third craniotomy – to have a shunt put in place. The surgery was a success and they were finally able to do the surgery and get the EDV out. This meant she was finally able to get out of bed without having to worry about clamping her EDV. She could finally move freely.

We stayed in the hospital for another week after these procedures as she was still not fully recovering as well as she should be. Every day in the hospital Ella would have some type of therapy. She needed to practice just sitting up and holding her head by herself. I will never forget the day she was going to have another feeding tube put in. Our neurosurgeon told us she strongly believed that Ella’s mental health was preventing her physical health from getting better. We were given a day pass, which turned into a night pass, which turned into a discharge the next day. If all had gone well, Ella was expected to have a hospital stay of only five days. But, by the time she was discharge, her stay had been four weeks.

There are many side effects from all of the surgeries and from the tumour itself. Ella now has facial palsy on her left side. It has made her eye closing fully impossible. Her left eye never closes. It has become so dry that there is a real concern for her to lose the sight in that eye. She is scheduled soon for another surgery to partially stitch her eye and will eventually need a weight placed in her eyelid to help close it. With her right eye open, they suspect she sees double. Because of that, she does not like to open that eye. If she keeps that eye shut for long enough, her brain may decide to shut off that eye. Ella also has ataxi – meaning her balance is extremely off. With the growth she has now seen, her balance and ability to walk has been even more affected. She receives therapy for that, which has helped her adapt to her capabilities. Ella has also lost all of her hearing in her left ear. Light bothers her and she also becomes over-stimulated easily and quickly. Then she struggles to calm down afterwards. She has started to realize that she struggles to keep up with her friends and you can see that each and every day her confidence is slipping away. She sometimes cries when we say we are going to the park and begs us not to leave the house. Unfortunately, this may not be the end of the list of her deficiencies.

Things were very slow in her recovery, we had multiple appointments each week with different specialists. Ella was put on a watch-and-wait schedule for her tumour with an MRI done every three months. Usually she requires a quick MRI between each one. By January of 2018, her tumour had grown 75 per cent – enough to realize that chemotherapy was necessary to help stabilize the tumour. Chemotherapy also has long-term effects that will not present until later in life.

The week after she was discharged, Ella was scheduled to have an IVAD put in to make accessing her veins and having treatments easier. An IVAD is a small device that is inserted under your skin. It is attached to a catheter in your chest and the catheter is inserted into a vein. She is in the middle of 70 weeks of chemotherapy with the assumption that the rest of her life will be an endless cycle of chemo and surgeries. She is on the lowest dose of chemo, which should give little to no side effects. Except, Ella seems to be the exception to all the rules and experiencing the rarest of side effects.

While on chemotherapy, fevers are very serious. Ella needs to go into the hospital and have blood drawn and go on preventive antibiotics. She would always get a fever while on treatment and would always end up in the hospital. Finally, after a few months, they realized that the fever is a symptom and she does not have to go in every time. Her hair has started to thin. She now gets sick and has more down days than good days. She will have short bursts of energy, but it takes so much out of her that she has to spend hours lying down.

Ella just received another MRI, after being on treatment for six months. There is a tumour cyst that has grown four times the size since last year. It is pressing on her cerebellum and causing even more balance issues. Her fourth ventricle is crushed and is not allowing fluid to flow. Now we start the process all over again – surgery where they will go in and drain the cyst and try to debulk more tumour. This will hopefully prevent the need for a second shunt to be inserted.

Going through something like this, as a family is extremely isolating. Of course, friends and family try to understand what you are goingthrough, but it is something that it just too difficult to explain. We hear over and over that Ella looks great and because you can’t see her tumour growing, or the effects it has taken on her emotionally, it is hard to understand the constant fear that is in your mind every single day, every waking moment. Every cough, every fall, every illness terrifies you.

In our darkest days, we have met some incredible people, either families going through their own similar stories, or foundations like Kids Cancer Care that are there to help. These people are beyond amazing. Everyone has gone out of their way to make sure Ella feels as comfortable and confident as she possibly can.

Through Kids Cancer Care, Ella goes to a gym class called PEER that runs throughout the school year. It is held at the Gordon Townsend Gymnasium at the hospital and it has so many other kids Ella’s age. It is such a wonderful class and they even have a one-to-one aide for Ella, as she needs extra help and encouragement. It is so great to see her at the end of every class with a smile on her face. This summer, Carolina, the instructor, even reached out to us to keep seeing Ella, just so she doesn’t lose any of the progress she was making. Carolina didn’t have to do this – it is something that she chose to do just out of the kindness of her heart. That is how they are at Kids Cancer Care.

We had the opportunity to see Camp Kindle for the first time on Mother’s Day, because Kids Cancer Care had planned something for all the moms and families. There were arts and crafts, volunteers for the kids and massages for the moms. Ella had so much fun; she talked about Camp Kindle all the time after that. When Kids Cancer Care held their Spring Family Camp, she was so excited to be able to go. Even though she was a little apprehensive to participate and play with many of the other kids, you could constantly see a smile, playing on her face.

By the time summer came this year and I found out that Kids Cancer Care offered a week-long day camp, I had to sign Ella up. I was a little afraid, because Ella has never been without me or Lyle by her side for that long since she was diagnosed. But they assured me that Camp SunRise would have enough volunteers to give Ella a one-to-one camp aide. We even got to go to Kids Cancer Care the week before camp started, so Ella could meet her camp volunteer, whose camp name is Cookie. Ella still has a picture of her and Cookie that she still looks at. She also still talks about her new friend Henry she met at camp. They even got to see each other again at the Panda Breakfast, Kids Cancer Care and the Calgary Zoo hosted, so kids on treatment would have a chance to see the pandas too. Ella is unable to go to Henry’s birthday party this year, so Ella and Henry are having a party earlier just so she doesn’t miss yet another experience. It is amazing what all these camps and activities are doing for Ella’s self-esteem, confidence and overall happiness. You can see just how far she has come in such a short time and we owe so much to Kids Cancer Care. We get emails from people just to check-in and see how we are doing. And we are always invited to all of the activities or camps that are going on.

I don’t wish this on anyone, but I am so thankful for the support systems that are put in place to help. These kids miss out on so much in life because most of them cannot risk getting sick. They are forced to grow up so quickly and to deal with things that most adults are not even capable of dealing with. To have a safe place to go and just be kids, there are no words to describe my gratitude.

We are learning as we go and we may have setbacks, but with all of that, one thing that we will always have is hope. By meeting others in similar situations, we have been given a chance to see just how strong a community Kids Cancer Care is. No one chooses to be part of this community, but we make sure we all feel like family. One day at a time and we will deal with every surgery, treatment, problem and complication that comes our way with our family. Ella is my hero.

– Christie Reimer, Ella’s mom

“She is clothed with strength and dignity, and she laughs without fear of the future”
Proverbs 31:25

Jessica is my daughter and also my superhero. She even has a superhero alter ego: BatBaby. Her superhero powers are strength, courage, and love.

Names are pretty meaningful for Jessica. As we drove to the hospital on the morning of her birth, I googled the meaning of the names we had shortlisted, and saw that Jessica meant “a gift from God”. This baby was indeed a gift as it was a miracle that we were even pregnant in the first place. We also knew that our baby had a mass in her brain, so my hope was that the meaning of the name Jessica would help to ensure her survival. Because when you give a gift, you don’t ask for it back.

What had been a textbook pregnancy, very quickly turned into the stuff of nightmares in the final month. At a routine ultrasound at eight months, we were told that there appeared to be something in the brain that hadn’t been there four weeks earlier. We met with the doctor afterwards and were told that it could be many different things. The only way of knowing more was for me to have a fetal MRI. An appointment was made for me to go to the Alberta Children’s Hospital for this to be undertaken.

As the days passed and the shock started to subside, I very quickly learnt that I had to stop asking “Why?” There were no answers to any questions that started with that word and I was going to very quickly drive myself insane if I kept asking them. I set out my intentions from that point on. I had no way of knowing what was going to happen, but what I did know was that I had to be strong for my baby and to focus on a positive outcome. Nobody knew where this path was going to take us, and so I had to keep my head and my heart filled with hope. I knew this baby had already beaten the odds to be here. She was a fighter. Her Ninja-like movements in my tummy confirmed this on a daily basis!

The fetal MRI ruled out quite a lot of things but it still didn’t give us any answers. Oddly enough, cancer was never mentioned to us. I tried to just focus on what we did know (which was not a lot) rather than on what we didn’t. Although thoughts of cancer had lingered since the ultrasound, I had tried so hard not to give my negative thoughts and fears any power. It was felt that it was in the baby’s best interest to be delivered by C-section. I was told to be prepared that my baby would have to have an MRI very soon after birth and may also have to be taken to the Neonatal Intensive Care Unit (NICU) following assessments. Nobody knew what to expect at all.

On July 7th, 2015, Jessica arrived in the world at 9.36 am. As they brought her round for me to see her, my heart just soared that she was finally here and that she was deemed healthy enough to be able to stay with me. She was the most beautiful baby girl that I have ever seen and she instantly captured my heart.

The next day, she was taken in for an MRI. As I walked through the corridors of the hospital, my heart sank as we turned a corner and I saw a sign saying Tom Baker Cancer Centre. As I sat at the foot of the MRI machine and watched my one-day-old baby girl be tightly swaddled up and strapped into a support, I was filled with so much love and admiration for her. The technician gave her a soother to suck on. As she was moved back into the machine, all I could see was this orange soother going up and down just like Maggie Simpson. She took it all in her stride.

Unfortunately, the MRI didn’t bring good news. The doctor informed us later that day that it did appear to be a tumour. He wanted more detailed imaging, and so for the second time that day, Jessica was taken for another MRI. This time though they had to put an IV in her hand in which they injected a contrast dye.

The following day we were discharged with a follow-up appointment scheduled a few days later with an oncologist at the Alberta Children’s Hospital. As we started to gather our things together we were visited by two doctors who both said things to me that day that gave me the courage and the perspective that I needed to navigate the road ahead. Firstly, the doctor who discharged Jessica said to me, “Right now she is healthy. Enjoy her.” I understood what she was saying. I needed to live in the moment and to make it as beautiful as I could. Tomorrow isn’t guaranteed for anybody. If the worst was ever to happen, I needed to ensure that there was a lifetime of beautiful memories to hold on to. Every day had to be treated for the precious gift that it was. We were then visited by a neurosurgeon who assured us that they were going to monitor Jessica so closely that they would see what was happening with the mass before it could affect her. We were so grateful that whatever this was had been detected so early on and that there was a medical team on top of things. I instinctively knew that she was in the best hands and his words that day enabled us in that moment to focus on just being Jessica’s mommy and daddy. We felt safe and confident in taking her home.

The next few weeks were filled with visits to the children’s hospital. It was hoped that the tumour was benign and that Jessica would grow quicker than it would, but until such time that a biopsy could be performed, we would not know for certain what exactly we were dealing with. We were made aware of what to look out for that would indicate any growth and we tried our best to not be crippled with anxiety.

In the meantime though, Jessica was the most contented and laid back baby who adored snuggles. She fit into our family life with ease and rarely cried. Even when she woke during the night for feeds, she would just lie there until you picked her up and would then go straight back to sleep again after. She appeared so healthy.

Our bubble was very soon about to burst though. After a routine MRI at six weeks, I received a phone call from our primary nurse telling me that the tumour had doubled in size and basically our only option now was surgery. My head was spinning. Suddenly, what had started to feel like ‘normal’ family life, was turned upside down. I was being told that my six-week-old baby urgently required brain surgery.

We met with her neurosurgeon the following morning and he informed us that his intention was to remove the whole tumour, but if she started to lose a lot of blood, which was highly likely, then he would stop and just perform a biopsy. We sat in that room hanging on to every word that he said about what would be the best outcome and what would be the very worst. It was terrifying and surreal, but we had no choice except to sign the consent forms and to put our complete faith in these people, because this was now our only hope.

The evening before Jessica’s surgery, I held her all night long, committing to memory every detail on her face and how she felt in my arms. The next day, at just seven weeks of age, we hugged and kissed our baby girl and told her we loved her as we struggled to hand her over to her neurosurgeon, at the same time praying that he would be handing her back to us again.

After what felt like an eternity, Jessica’s doctor walked into the room and told us that the operation had been a success. He had performed a total resection. When we arrived in the Paediatric Intensive Care Unit (PICU) and saw Jessica, I was shocked at what I saw. Jessica was hooked up to so many machines and looked gravely ill. She looked so unhealthy and it forced me to face my fears. Although still undiagnosed at this point, I knew I was witnessing firsthand the effects of cancer and what we were up against. I realised there and then that there was a very strong possibility that Jessica could actually die.

Jessica struggled with pain for several days following her surgery. After a few days though she had improved enough to be moved up to the unit, but following a seizure, a Code Blue was called. That was one of the most terrifying moments of my life. Hearing all the alarms sounding and seeing the room rapidly fill with so many people, I just felt so helpless as I stood there watching them working on my baby girl, terrified that we were losing her. She was stabilised and taken back down to the PICU where she stayed for a few more days.

Once back on the unit again we had a visit from her oncologist who told us that initial pathology results were back, and that the tumour was malignant but that further testing was required to determine the exact diagnosis. Even though by this point I already knew it was cancer, hearing those actual words spoken was like a knife to my heart.

It took four weeks for the exact diagnosis to come back. It was a congenital glioblastoma multiforme, which is extremely rare in babies. So rare that less than 60 babies worldwide have been born with it. It was recommended that Jessica have between six to ten cycles of chemotherapy. This was based on research published in 2012 where four babies had all responded successfully to two different drugs following their surgeries. Her doctors intention was to cure. They say that hope is the oxygen of the human spirit and so we held on to that hope as tightly as we could.

To be asked to consent for our baby to be given chemotherapy, whilst albeit a straightforward decision in the sense that this was the only chance of survival that Jessica had at this point, was still a decision that tore our hearts apart. We were allowing our daughter to have toxic drugs pumped into her tiny, precious body. Drugs that are so harsh, nurses wear protective clothing just to carry them into the room. Such is the strength of the drugs required to fight cancer. We were frightened and overwhelmed. We had no idea what to expect or how we would protect her whilst she was immune compromised.

Jessica was admitted to the pediatric cancer unit, Unit One in September 2015 where she underwent another surgery to have a Broviac central line inserted into her chest through which the chemo would be administered. Whilst under general anaesthetic, Jessica also had another MRI and a lumbar puncture, which both came back clear. Her first chemo happened the next day. It was so hard to watch. I had so many feelings of guilt for putting Jessica through it, but I had to believe that this was her best chance for survival and that we were allowing her the ability to fight this. Jessica would be admitted every four weeks for her chemo which would take place over three days. We were told to be prepared for hospitalisations in between as she would likely pick up infections. We were also trained in what to do should her central line break. How they got us to leave the safety of the hospital after that first admission I will never know.

None of the subsequent chemo cycles were any easier. Every time she was admitted, I would cry for what was to come. What made it even harder was the fact that Jessica was a baby and couldn’t tell me how she was feeling. I was scared that I wasn’t advocating enough for her. I knew that the drugs made her feel nauseous because her feeding dropped off almost immediately and she would throw up for several days after. She never looked ill though. In fact, she appeared so healthy and smiled her way through every cycle even though her eyes conveyed to me how hard it actually was for her. She never lost her hair and was hitting all of her developmental milestones. She astounded everyone. I have no idea how she did it, but she always seemed to bounce back so well. It was as though she was saying “OK, that’s another one done! Bring on the next one!” Her strength and endurance were remarkable, beyond anything that I have ever witnessed in my life.

At her clinic appointment for her sixth chemo cycle, we were told that if we were happy for this to be her final cycle, then so too was her medical team. To say we were shocked was an understatement. Although we knew that she had been prescribed between six to ten cycles, we never knew from one cycle to the next exactly how many she would have. During that admission we had many long discussions with her doctor and primary nurse. It was one of the hardest decisions we have ever had to make. We went back and forth, but ultimately we felt that we had to look at this with logical minds. We couldn’t continue to put these drugs into her body if she no longer required them. We had always put our complete faith and trust in Jessica’s team and we knew that her doctor would never offer this to us if he wasn’t confident himself. The babies, on which her treatment protocol was based, were all cured. After much soul searching, we finally agreed that this would be Jessica’s final chemo cycle. Jessica wore a BatBaby onesie during that admission that said “Stay Calm, I Got This.” It was as though she was giving us her consent.

One month later, a routine MRI came back clear, with the exception of a cyst that had been growing in her ventricle since December 2015. Her doctors weren’t too concerned though as its growth had been slow, so they were just continuing to monitor it.

Just three weeks later, on April 5th, 2016, we filmed a dressing change on Jessica’s central line which was scheduled to be removed the following week. We wanted to show her when she was older how amazing she did during dressing changes. Even nurses would comment how calm she was. She would just lie there smiling up at us and would usually giggle when we pulled the dressing off. As we put Jessica to bed that night she was her normal, happy little self. We had no idea of the horror that awaited us.

Early the next morning, Jessica woke up crying and was inconsolable. She then began to throw up and started choking. We called 911 and were taken to the children’s hospital. As I held her in my arms on the way to the hospital, her heart rate was slowly starting to drop. By the time we arrived she was unconscious. I was convinced it was the cyst that had grown, but as her oncologist and primary nurse arrived in the emergency room and stood in the doorway, I could tell by the look on their faces that there was more to this.

Jessica was taken for an MRI and we did our best to try and stay positive. Eventually our pager buzzed telling us to return to the MRI department. As the doors opened, Jessica’s doctor stood there with tears in his eyes and said, “I’m so sorry. The cancer’s come back”. The tumour had grown so fast it had hemorrhaged. They had already intubated her in preparation for any surgery and she was taken to the PICU where we waited for her neurosurgeon to join us.

We were told that it was a mess inside her brain. Her doctor was prepared to operate if we agreed, but we were told that should the cancer return, then he wouldn’t be able to do so again. Our hearts were breaking as we had to quickly decide our baby girl’s fate. Having to make an informed decision within minutes, all whilst in a complete state of shock and highly emotional, was absolute torture. What I did know though was that I couldn’t give up on Jessica. She had fought so hard to be with us that I just knew in my heart she wasn’t ready to go anywhere. She was still here and she was fighting. Struggling with our emotions and the enormity of the situation that we now found ourselves in, we signed the paperwork, and once again in the space of only a few months, we hugged and kissed Jessica and told her how much we loved her as she was taken away for brain surgery. She was just one day shy of turning nine months old.

Jessica made it through her surgery, but this time her doctor was only able to perform a partial resection. As I looked at my baby girl lying there in the huge crib with all of these machines monitoring her, intubated and with a drain coming out of her head, my heart was broken and I felt so defeated. I couldn’t believe that we were back in this position again. We had been so convinced that she was finally on the path to remission.

The pain was more intense this time for her and it took a lot longer to get under control. It was so hard to see her struggle so much. The energy in the PICU was unlike anywhere else in the hospital. Life and death hang in the balance and your senses are constantly under attack. Everything I saw, heard and felt in there are forever seared into my soul. Those feelings of fear and being so lost and powerless to help Jessica as we lived from moment to moment will haunt me forever.

Knowing how aggressive Jessica’s tumour was, her doctor started chemotherapy a week later. The new protocol consisted this time of three different drugs, one of which was an oral one that we were trained to administer. She also started a formula-based ketogenic diet. We were told that they weren’t as hopeful this time around, but wherever there was hope, we all grabbed it with both hands. In all honesty, they could have told me that she only had a one percent chance of survival, but I once read that if you’re in that one per cent, of which somebody has to be for that figure to exist, then you have a 100% chance of survival. It was that simple in my head. If Jessica could be so brave and strong, then I owed it to her to put on my positive pants and fight alongside her.

This particular hospital admission lasted five weeks because Jessica caught an infection. The drugs were a lot tougher on her little body and completely wiped out her immune system and made her throw up more. She even started to lose her hair which I found so hard to accept. I knew that babies could be bald, but now Jessica looked like she had cancer. Every day I had a visual reminder of what we were up against and it terrified me. Remarkably though, Jessica still continued to greet everyone who came her way with the most beautiful smiles and took everything in her stride. Doctors and nurses were always allowed to perform whatever tests they wanted to so long as they shared their medical ‘toys’ with her. Her very favourite was her orange syringe, which went everywhere with her! Even in all of this darkness, Jessica could still see light and find rainbows. She brought her own sunshine and it was so inspiring to watch.

After Jessica’s relapse her cancer just never gave her a break and following another partial seizure, an MRI confirmed that there were now multiple tumours growing in her brain. We were absolutely devastated. Jessica was now eligible for clinical trials, albeit a limited number of them because she still wasn’t yet one year old. Her tumour was also being tested for certain markers, that if present, she would be able to try a new drug being trialled at the Hospital for Sick Kids, which was showing positive results. We were also told that radiation was another possibility, but because of her age, this would cause brain damage. Our heads and hearts were all over the place.

However, during the following meetings we had with her medical team, many of the different options that had been presented to us became unsuitable for one reason or another. All that we were eventually left with was radiation and we were all struggling to commit to putting her through this. I remember saying to her doctor though, “She’s not ready to go yet. She hasn’t done what she came here to do.” On some level, I already knew the reality that we were now facing, but Jessica was still fighting hard, so I had to stay focused on helping her to achieve her purpose, whatever that was going to be. Somehow though, I just knew that she was guiding me towards it.

Late one Sunday afternoon in June, Jessica started throwing up. She was sat on my husband Kevin’s knee making no sounds or movement and was just limp and lethargic as she was vomiting. We went straight to the hospital and were admitted. Her nurse brought in some medication including a steroid. I knew that they were trying to reduce any swelling in her brain caused by the tumours.

Jessica responded well to the medication and on June 28th, our son had his preschool graduation ceremony. Jessica had had her MRI first thing that morning and we were given an overnight pass along with 24 hours’ worth of medication so that we could enjoy Jake’s graduation together as a family. It was a wonderful day and afterwards we took Jake to his favourite restaurant for dinner. As we were leaving we got a call from Jessica’s primary nurse. We already knew that the MRI wasn’t good as they had received a preliminary report before we left the hospital. However, the full report was now back. The tumours were now huge. We were told that all the medication that they had given us to give to Jessica throughout the night needed to be given to her immediately in one dose to keep her safe. We were in a complete state of shock. Neither of us said anything to each other but we knew we were on the precipice of facing our worst nightmare.

Up until that point, Jessica had slept every night in her crib in our room because I was terrified of her having seizures. I knew though that she needed to spend the night in her own room. We moved her crib in there and put an inflatable mattress on the floor which my hubby, son and I all slept on. When the alarm went off the next morning to go back to the Alberta Children’s Hospital my heart sank. I knew that Jessica had just spent her last night at home with us.

We arrived back on the unit and met with Jessica’s doctor that afternoon. I was dreading hearing the words come out of his mouth and was desperately trying to prevent an anxiety attack from escalating. With tears in his eyes he told us there was nothing more that they could do for her. The tumours had grown so large that radiation was not even an option anymore due to the initial swelling it would create. We were all in agreement that Jessica should be allowed the dignity of being able to peacefully pass away in our arms. Everyone was in shock, because aside from her recent vomiting episode, Jessica had been, and still was, presenting so well which belied just how bad the imaging was. They predicted that she had one to two weeks left.

We were absolutely devastated as we tried to get our heads around the fact that our daughter was going to die very soon. Immediately after that meeting though, there was a visible shift in Jessica’s demeanour. It was almost as though she had been waiting for us to be told that she was terminal. I could see it in her eyes and in her smile, just some sense of knowing. Only now did she allow herself to rest. Such was the incredible amount of love that she had for us. Despite our devastation though, we were filled with gratitude for the time that her team, our hospital family, had given us with her. We asked if we could remain on the unit with them as these were the people who had been with Jessica from birth. They had supported us through every joyous and every heartbreaking moment of her journey. She was as much their baby as she was ours. We were determined that Jessica’s final days were going to be filled with the same amount of love, laughter and positivity that she had known all her life and everyone rallied around her. She made it to her first birthday and she was treated like a princess.

Jessica continued to astound everyone with her incredible strength and fighting spirit. However, it was becoming evident that the tumours were growing, and as a result, her pain was intensifying. We noticed though that if we held her during the night, the duration between her requiring extra shots of pain medication extended and she was more settled. From then on, Jessica was held in our arms 24/7. Proof of the power of love and her awareness of us because she would only allow either Kevin or myself to hold her by this point.

On the evening of July 16^th, after what had been a very peaceful day for Jessica, she suddenly screamed out in pain. We called for her nurse and within moments of her receiving an extra dose of pain medication, Jessica fell silent and limp in my arms. I was holding her against me and couldn’t see her face. As fear crept through my body, I asked her nurse if she was still with us, as we all stood there in shock. This wasn’t supposed to be how it would happen, with no warning whatsoever. As the nurse put a stethoscope against her back, Jessica took a big gasp of air and then visibly started breathing again.

After the nurse left the room, I was left alone with Jessica for a few moments. I was still stood up, cradling her in my arms as I gently rocked her in a desperate attempt to somehow be able to soothe my baby girl. Tears were streaming down my face as I realised how close we’d just come to losing her. As I looked down at her beautiful, chubby little face, she gave me the most precious gift possible. She opened her eyes. She was staring right at me with those gorgeous blue eyes. The last time that I had seen them, which was days before because of how heavily sedated she now was, they were affected by the pressure from her tumours, but right now, they were perfect, and she was looking straight at me. I knew that she was telling me that it was time and was asking me to let her go, because up until that moment, I hadn’t been able to do so. Jessica had waited for me to be ready. She was giving me the gift of being able to say goodbye to each other. Time momentarily seemed to stand still as I stood there looking into her eyes, the windows to her soul, and told her what she needed to hear me say.

There was a sense of peace that descended upon Jessica’s room that night. I read to her what I knew was going to be her last bedtime story and I held her tightly all night long, once again, taking in every detail of her face and how she felt in my arms, as we edged closer and closer towards the moment that I had desperately hoped would never happen.

The next day, July 17th, 2016, after the most graceful and courageous fight, Jessica took her final breath, and a piece of our hearts, as she passed away in my arms. Kevin had said that as I had been the one who brought her into this world, I should also be the one holding her as she left it.

We had already consented to donate Jessica’s tumours to research. There was no doubt in my mind that this was part of Jessica’s purpose. What was harder to wrap my head around was that there was a limited window of opportunity for them to remove her tumours after she had passed in order for them to be viable. We therefore allowed them to take Jessica from us quite quickly after she had died so as to maximise their chances of growing a cell line. It was incredibly hard to have to prepare her so soon after she had passed, but knowing that she was going to be that stepping stone in cancer research, so that hopefully one day, in the not too distant future, no family ever has to endure the heartbreak of saying goodbye to their child, spurred us on. Their fight is now also our fight, alongside the incredible research doctors working with Jessica’s donation. Thankfully, the researchers were able to create a cell line which is now classed as established, which basically means that it will now live in the lab forever. It’s believed that it is currently the only one in the world for this tumour type.

Throughout Jessica’s life we were always supported by Kids Cancer Care. We were given home cooked meals to help ease the strain of hospital life and I always looked forward to their Pizza Night on the unit. It was such a welcome break from the hospital cafeteria and also allowed me a respite as I chatted briefly with the volunteers, all of whom have had children diagnosed with cancer. Even now Kids Cancer Care continues to support our family and they always ensure that we get the opportunities to heal our hearts and to honour Jessica through their Time to Remember evening for bereaved families and at their Bereaved Family Camp at Camp Kindle. On this special weekend each year, we get to just switch off and enjoy the beautiful surroundings and fun activities. We’re also given so many wonderful opportunities to create lots of special family time with Jake such as watching the Calgary Hitmen, attending the Kids Cancer Care Halloween Howler, and probably Jake’s most favourite experience: riding the Polar Express at Aspen Crossing. Jake also gets to spend a whole week at summer camp surrounded by fun, kind and dedicated people who understand what he has been through. The volunteers and staff that we have had the pleasure of meeting at Kids Cancer Care are just incredible and we are so grateful for them. We are also so grateful to all the generous donors who make it possible for them to support families like us during the toughest and darkest period in our lives.

It’s been two years since we said goodbye to Jessica and the scars from this journey haven’t faded. Once you’ve walked this path you can never un-see or un-hear the horrors of childhood cancer. It still hurts more than I could ever say. My arms and my heart ache for Jessica and not a day goes by that I don’t think about her, but I carry her in my heart and I know that she will always be with me. Jessica is more than her diagnosis though and more than her death. Cancer does not define her. Jessica is one of the most amazing and inspirational people I have ever met who taught us so much about life and love. Although my arms feel empty, my heart is so full. I’m so blessed that she chose me to be her momma. Her love and light shine so bright still and she inspires me to try and live my life by the example she led. She was our cheerleader throughout everything, constantly lifting us and showing us what the important things in life truly are. She will forever be my mischievous little monkey who enjoyed tormenting her brother, but who also worshipped the ground that he walked on; for the snuggles that she gave; for the beautiful smiles that lit up the room and her big, blue eyes that twinkled; for her strength and determination; for the lessons she taught us; and for the gift that she left to this world, the chance to find a cure. Donations to Kids Cancer Care actively help to advance new research, so from the bottom of our hearts, thank you Kids Cancer Care and your donors for helping to keep Jessica’s legacy and hope for other families alive.

Although we live in fear of another tragedy striking (because when that rare occurrence has happened to you, no amount of reasoning can calm your mind anymore), we are incredibly blessed and grateful to have had a whole year and ten days with Jessica. Time gifted to us through the knowledge and expertise of our hospital family, through the power of medical research and the charities and donors who support them, and through the bravery of the families who consented to allow their babies to shape the research that Jessica’s first chemo protocol was based upon. Because of all these individuals, Jessica is forever fully woven into the fabric of our family and all of our traditions. Each and every person made a world of difference to our lives. What pulls us through the pain is love. Our love for each other and for Jessica. We are trying to live our lives with the same grace, gratitude and zest that Jessica did. To live in a way that honours and celebrates her and enables her love and light to be passed on to others and for us to be able to pay forward all the support and kindness shown to us. Every day, just as we did throughout Jessica’s life, we try to choose love and hope over anger and fear. To allow our thoughts, words and actions to come from that place of love where we now carry Jessica in our hearts. And because Jessica is in our hearts, love is our superpower too!

– Lynsday Heaton, Jessica’s momma

You can help save the next Jessica. When you make a gift today, you can help save a child’s life as researchers work to find new and less toxic childhood cancer treatments. Click here to donate.