My name is Céline, I am 29 years old and I have been a nurse in the city of Sherbrooke for almost 7 years. At the beginning of 2019, while pregnant with our first baby, we learned that a tumor was growing in my spinal cord between C1 and C5. A wonderful, competent and reassuring healthcare team took care of us and followed us throughout my pregnancy, which was deemed “ at risk”. It was difficult, at that time, to imagine what awaited us. Our strength is that we always remain positive and live one day at a time.
In the spring, I experienced neurological symptoms and pain which worsened. I lived each day of my pregnancy as I had dreamed it, and concentrated my efforts on the simple fact of bringing my baby as close as possible to full term. Some days were more difficult than others largely because of the pain. But, I didn’t let it stop me from creating beautiful memories and preparing for my baby’s arrival like any mother-to-be. Pregnancy made it difficult for me to take medication to help with my pain. I was followed very closely by a team of healthcare professionals, who combined specialties worked together to offer us the best care. I can’t thank them enough because they made those difficult times so much easier to accept and go through.
On July 30, after I lost my right hand proprioception on the weekend, I went to my follow-up appointment. The high-risk pregnancy team then decided to perform a cesarean section. I accepted that I have given as much as I could for my baby but at that point it was time to think of me if I want to be there for him afterwards. The pain weakened me, even if I tried to prove myself the opposite, I had difficulty eating and sleeping. Giving birth allowed me to be able to receive larger doses of corticosteroids to protect me from the edema caused by the tumor and gave me the chance to have my operation with the best outcome possible.
On August 2, 2019, at 33 weeks, our son Paul was born, uttering a fighting cry the second he took his first breath. At that point, nothing I was told was going to make me doubt or give up. The back and forth in neonatology began and I cradled my baby there as much as possible through the preoperative appointments. I was asked to prepare my will, to verify my life insurance and identify those who would act on my behalf. This was probably the most difficult thing for me to do at this stage. It just didn’t make sense.
The neurosurgeons operated on me 19 days later to decompress the spinal cord. They doubted that they would be able to remove the tumour since it had infiltrated and it was difficult to tell the difference from healthy tissue. The damage could have been irreversible or even fatal. Despite everything, I went into surgery with great serenity and confidence in the neurosurgeons and healthcare team.
That morning before my surgery, I cradled my baby on my own two legs and wondered if this was the last time, I would have that chance. But I knew it was the best thing to do. I was right, since I woke up moving both my arms and legs with 90 percent of the tumor removed! The first battle of this war was won against an enemy still unknown. We were predicted to have an anaplastic astrocytoma but unfortunately the beast was more ferocious, Glioblastoma Multiforme (GBM) was the diagnosis. A grade 4 brain tumor. I would certainly have had a better chance of winning the lottery since the neurosurgery team had, to date, no known cases with localization in the spinal cord.
This is why I was referred to Dr David Fortin who explained to me that I would receive the same treatment as if the tumor were in the brain. In the fall, I then completed a one-month cycle of radiotherapy combined with chemotherapy, then 6 other cycles of chemotherapy which I finished in April of 2021.
And as if that wasn’t enough, life sent me another challenge. At the same time, I developed a major and rapid kyphosis of my cervical spine forcing me to wear a rigid collar for 5 months. An operation is necessary to straighten and fix my vertebrae. This was another hard blow that could have discouraged me and made me doubt, but I still dreamed of getting up for my son and being the mother he deserves to have.
I can’t go and pick him up from his bed or console him when he cries. I can’t dress him in all those beautiful clothes that I had taken care to prepare while waiting for his birth. I cannot bathe him alone, nor take him for a walk. So, I console myself by telling myself that what matters is that I am simply here with him. We spend our days together. As he gets older, I watch him evolve when he plays close to me. He is so serene and joyful that I cannot give up on the best gift life has given me.
I work on my dexterity by practicing passions that are close to my heart such as painting, sewing or even just cooking. I’m learning to write with my left hand, to hold utensils or a glass, to tie my hair, to tie my laces… in short, all kinds of things that were so natural before. And I think that with a bit of perseverance and encouragement from my loved ones and also from the professionals who work with me, I have exceeded many expectations.
All of this would not have been possible without the help we received. A real chain of solidarity has been created to provide us with support, comfort. Sometimes simply the presence of our family and friends here and elsewhere. A lifetime would not be enough to thank them for taking part in our fight and for bringing us so much warmth and kindness.
Today, 18 months have passed since the diagnosis and the beast is stable. I’m learning to tame the pain and to give it as little room as possible on a daily basis…let it be smaller than my ambitions even if I know it is permanent. I recently regained my driver’s license. I am gradually reintegrating into work, but above all, I take care of my son as much as I want. I know I can’t make up for the times I would have liked to have lived when he was born, but now I can take his hand and show him the way.
It was difficult to regain a rhythm after the treatments. We did not talk enough about the post-treatment experience. For my part, I had unconsciously isolated myself socially and reality quickly caught up with me when I wanted to regain a little more control of my life and my body. It was as if the whole time I had watched the world go by without me. I felt like a foreigner and a lot out of place. It is all the more difficult because I have hidden these trials for a very long time from my social network, out of fear a little, out of shame too. This fight taught me that accepting help doesn’t mean being weak. And we have received help, here and remotely. We have received so much that today my heart sinks when I think about it. All of this would not have been possible without them. A real chain of solidarity has been created to bring us support, comfort or sometimes simply a presence, on the part of family and our friends. A lifetime would not be enough to thank them for taking part in our fight and for bringing us so much warmth and kindness.
A year filled with small and bigger griefs. Some have left scars that are much more painful than this tumour. A year to learn to accept that a lot has changed and that we will have to get used to it. A year to make me understand that it’s okay to talk about it, because a fight is only possible when it is known.
It would be a like to say that I think that life has more to offer me. I’m sure I’m still here for a reason, my son is proof of that, and I think I still have things to share, a lot of love to spread and dreams to fulfill. It’s impossible to know what will happen tomorrow, or in 6 months or in 5 years, but it’s the same for everyone so why should I put up barriers? I often told myself that this tumor had not chosen the right person, but now my wish is that no one has to undergo such a diagnosis.
I will continue to walk in the Brain Tumour Walk for the Foundation with the hope that one day a cure will be found.
I take this opportunity to thank my loved ones, my spouse, my family, friends and colleagues as well as all these professionals who have helped us along the way. The neurosurgeons Dr Pimenta and Dr Blanchard, Dr Fortin neuro-oncologist , Dr Caron in internal medicine, Dr Bertelle and Dr Massé in neonatology, Dr Ebacher radio oncologist, the obstetrics team, Mélanie nutritionist, Simon occupational therapist, Mélanie physiotherapist, Edith pivot nurse, radiology technicians, residents, nurses and nursing assistants, respiratory therapists (thank you Danielle), attendants, administrative officers, social workers, volunteers… You have all made a difference.