“She is clothed with strength and dignity, and she laughs without fear of the future”
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 16th, 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