***This is a unique guest blog I am … well excited isn’t the right word.. I guess I just feel excited about sharing it with all of you. This post was written by Marina another cancer mom. She, like me, uses exercise as therapy and she has channeled that into an incredible way to honor her daughter and raise money.
Her family is also the Canadian champions for bringing our Fluttering campaign to Canada. We put kits on pre-sale for them to be sure we can get the materials ordered and shipped out in time to make our biggest campaign international. So if you know of anybody who might be interested in Canada please share this link with them..
I will share the writings on the other children she is honoring in upcoming blogs.. But for now.. meet Robyn.***
Robyn – Kilometre 1
On April, 6, 2016, the day that should have been my daughter Robyn’s 18th birthday, I will be running the 18kms from her resting place to our home. Robyn was a runner so it seems fitting to honor her in this way. The run will celebrate the 17 years we were blessed with Robyn, mourn the years that were stolen from us and will take positive action to seek better treatments and ultimately a cure for childhood cancer. 18kms for Robyn’s 18th birthday. Each km is dedicated to a child that we came to know on this journey. All donations will support Unravel. I hope you will join me in supporting this very important cause. Robyn loved running and I know she will be running with me every step of the way.
One week she was a healthy 16 year old running track and the next she was fighting for her life in PICU, (Pediatric Intensive Care Unit). There was a tumor in her chest pressing on her heart & lung, causing blood clots in her arm. It was hard to reconcile how this was even possible over such few days….
When they said it was Lymphoma we all cried, I felt myself retreat inside & I didn’t hear much else. Radiation and chemo began immediately; several lines & even a chest tube were inserted into our child, mostly in critical frightening moments. We were given a roadmap of Robyn’s treatment plan, her life for the next 2 ½-3 years. It was terrifying & daunting to see the endless list of medications, procedures and tests she would need to survive, we felt the weight of it all settle over us.
After several days Robyn stabilized & we were transferred to the pediatric oncology unit. I was frightened to leave the 1-1 patient nurse ratio in the PICU, but, was so grateful to see that each patient bed had beside it a little parent bed. It was so reassuring to be within arm’s length of my girl whenever she needed me & I could watch the machines and her vital signs just in case. We met other families & children, sharing our stories and fears & made many friends, they became family, they understood, they were living it with us. In most cases, just like ours, the cancer was insidious and sneaky presenting like so many other milder ailments; no one ever dreams it is cancer. When we were told Robyn would lose her hair she had it cut & donated it. It was a very emotional day for her. For me it was far worse to watch the poison, the chemo, infusing into her body, imagining which of the long list of side effects she would suffer (everything from heart damage & blindness to nausea), and wondering if it would even save her, at the same time knowing it was our only chance. Like most of the moms, I would hide in the bathroom & cry to shelter my Robyn from my fears.
A sense of panic and fear enveloped me when we were discharged 2 weeks later. Armed with several bags of syringes, medication and instructions we began the treatment journey. We lived so far away that we had to stay in Edmonton for the next four months due to the frequent outpatient chemo & treatment schedule. My husband & 2 sons traveled back & forth while Robyn & I were fortunate enough to stay with a dear friend, who became another mother to Robyn & my shoulder to lean on. We lived those first days on edge, each change or new symptom sending us into full panic mode, calling the doctor on call or going back to the outpatient unit for reassurance.
After stressing, praying & lying awake at night, finally at her one month checkup the wait was over and we were overjoyed to get the news that she was in full remission. I have never felt such incredible joy! We had hope. She would be ok.
Over the next few months of treatment our lives changed .We avoided crowds when Robyn was immunosuppressed, hand sanitizer was everywhere, and we washed our hands so often they were chapped. We turned down visitors who were ill, sidestepping people who coughed in public. We were on high alert, desperate to avoid any infections or fevers that can be life threatening to a child with no immunity. Still we had fun, we walked the trails, and we ate at restaurants when her appetite was good. We explored the city & we shopped. We were inseparable. She got stronger, she exercised. She chose to have her lumbar punctures awake & she never complained. When she lost her hair it was gut wrenchingly hard. It fell out by the handful or brushful & suddenly it was gone. For her this was worse than even the diagnosis, it shook her identity & confidence. We got her a lovely wig & she marched on, but, she was determined that no-one see her without it. It was painful to know that she considered herself less beautiful, it broke my heart to read her text to a friend & see the words, “when I used to be pretty.”
In the fall we were allowed to return home & travel back & forth to the city weekly, staying for a few days at a time, again it was frightening to be so far away from the security of the Stollery. It was a lot of driving, 6 hours each way but so worth it to have our family and home life again. She returned to school, but, completed most of the semester of grade 11 on her own because of all the traveling. It was not easy to encourage her to work when I could see she was tired & nauseous or not feeling well, but she insisted that she was going to graduate with her class. Life became a little more normal. She started playing volleyball again, which broke me & made me proud at the same time. To watch her become fatigued from the warmup alone, to see her standing on the sidelines with her pale skin and bruised legs (from her daily injections) and to see her trying to choke some food down while her friends were all oblivious to her nausea was painful. We spent Christmas in Edmonton due to stretches of chemo over the holidays, including Christmas & New Year’s Day. She felt awful & could not really enjoy all the treats & food, but, we still felt blessed.
Finally after only one hospitalization for a fever we had reached the Holy Grail of maintenance. For us this meant only once a month trips to Edmonton. Our family life resumed, I spent time with my boys. Robyn was back in school full time for the most part & back to her friends. Our house was full of laughing teenage girls again & although she was not as free as before (schedules ran around injections and medications), she was happy. Her hair started to come back, as soft & curly as when she was born, how incredibly happy that made her & the rest of us. It was like a sign that she was on her way. She planned ahead, daydreaming about how long her hair would be by her graduation. She joined club volleyball and worked out several times a week, regaining all her body weight & strength. We made plans. We booked her wish trip to NYC for August & camping trips were penciled in for the summer.
Then our world fell apart. On the 3rd monthly checkup blast cells appeared in her bloodwork. It was confirmed. She had Acute Myeloid Leukemia. A different cancer, a worse one. We felt despair more intense than the joy we felt at remission. Everything we had gained, everything we had planned was taken away & everything she had endured had been for nothing. The hospital was our last home with Robyn, the treatment for AML so intense that she was not allowed to leave. Aggressive chemo resumed. They said it would be harder, how could that be? We were told she would need a bone marrow transplant & that terrified us; we knew how difficult & risky it was. Then we received the news that her brother was a perfect match and we were joyous again! We had hope! So many ups and downs it was exhausting.
Her hair fell out again & she abandoned her wig for a cap. Much to her horror her eyebrows fell out followed by many eyelashes. I swear she mourned each individual one. The girl who was often mistaken for a model was met with curious stares with her cap, pajamas and stacked IV pole as we walked around the hospital. At first this was distressing but eventually she would turn and lock eyes with those individuals as a silent challenge. I admired her! It was so hard and yet despite it she was determined not to lose muscle like the first time & she continued to exercise frequently, even on chemo days. Bone pain made its first appearance & it was excruciating. How helpless I felt on those days. Morphine drips, hours of massages & heat packs did little to help. We watched another summer pass us by through the window & saw a friend lose his battle with Leukemia. And at the end of that long horrible month, after all she had endured; we were told that she was not in remission.
Another round of chemo began & with it came loss of appetite & nausea, no longer was there any joy in food. It was a trial to think anything she could tolerate. The days were filled with even more transfusions, procedures, chest tubes, & biopsies. Ultrasounds, chest X-rays and CT scans became frequent as complications developed daily. Lesions sprouted, lymph nodes enlarged, abscesses formed. More trips to the operating room happened and more scars marred her beautiful body. The companion to all these tests & procedures was incessant worrying & infinite imaginings of more complications and bad news. Robyn tried to keep up with texting her friends & it made me cry to see how exhausting even that had become for her.
Another bone marrow biopsy revealed that the cancer had grown significantly despite all the chemo. I felt like I couldn’t breathe, shock & horror covered us, was this really happening?
Another plan was presented; we were running out of options. The doctors then surprised us by disconnecting all Robyn’s lines & giving us a pass for the rest of the day. We were shocked. We eagerly sprang into action, so thankful for this unexpected gift. Robyn donned her wig, put on her makeup and we were off. We went to Whyte Ave. then for a nice walk in Hawrelak Park. It was a lovely sunny afternoon. I am so grateful her dad was there too, it was the last time we did anything fun together. We were driving to a favorite restaurant when the bone pain returned. It accelerated quickly & we had to turn around & go back to the Stollery. It seemed to take forever to get there & hours of agony followed. My stoic child who never complained was screaming endlessly, no amount of Morphine would touch the pain. I still feel so angry that God could not at least have given her that full day to enjoy, but, Robyn saw it differently. “At least I got to do half the things I wanted”, she said.
The new treatment was harsh. It destroyed her marrow immediately. At some points she was receiving platelets daily & she had no immunity ever again. She found joy going to the physio gym & visiting with the nurses who had become her friends. When the dreaded fevers started, we were put on isolation and then even those small pleasures were taken away. We were restricted to her room. How she missed the visits around the nursing station with the nurses & her walks around the hospital. As Robyn said, “this is not living.” Her sweet nature prevailed & I marveled when she would reassure doctors or nurses that they had done a good job, only to tell me later how much it had hurt. She always thanked everyone, even for the unpleasant things they did to her.
Her last week was worse. We were transferred to Calgary after only a few hours’ notice. It had been decided that she would never reach remission & they planned to transplant her before her marrow recovered. We cried, because Robyn never got to say goodbye to the nurses she loved most. Again we were terrified of all the unknowns, the future, everything.
She never made it to transplant. Each day in Calgary the infection in her lungs bloomed and daily we watched her decline, receding before our eyes & we were powerless. Eventually she was put on a ventilator. We were told, “Your daughter will never recover.” How does one ever process those words? Again I felt that same feeling, my mind retreating deep inside, I felt so cold, we cried & held each other, we could not believe it had come to this.
As a parent letting her go was the hardest thing I will ever do. We gave our assent and her lines were removed, the ventilator turned off. We four surrounded her in silence punctuated only by her labored breathing & our tears. I crawled into bed with her & kissed her soft bald head for the last time & held her until she was gone. I grieve all the things she will never do or see. All the “after we get through this” plans we will never fulfill. That someone so beautiful inside and out should be taken so young & spend their last year going through so much. I grieve that I will never again hold her, hug her, tell her I love her, hear her boisterous laugh, see her beautiful face, listen to her chatter, and do all the things that mothers and daughter do. I do not miss the emotional rollercoaster of hope & despair, of pain & relief, of worry & knowing of watching my child suffer & being powerless.
Cancer has changed me, it has changed our family. I see life and the world around me differently now.
You can view Marina’s fundraising page here.
To follow Marina’s run please visit her blog – Robyn’s Run.