March 15, 2017- It was after Eden started complaining about tummy pain in addition to everything else that I finally took her in to see our family doctor. He immediately recognized that something formidable was happening and he proceeded to set up an emergency ultrasound at our local hospital. When he cancelled his other appointments to meet us at the hospital, I knew that it was serious. Right after the ultrasound, Eden was hooked up to an IV and the doctor let us know that a mass was discovered in her liver. She needed to be transferred by ambulance to McMaster Children's Hospital to clearer imaging and a treatment plan.
Meanwhile, Eden's 10 year old cousin, Lidia, began to fervently pray at home for Eden. While praying, she felt God tell her to look up Hebrews 4:16 in her Bible. She wrote it out with a prayer and drew a picture of Eden. This verse was our lifeline during our journey. It was a clear message to us that God would not abandon us- that we were never alone. His love would carry us through, where ever the journey might take us.
The same evening at McMaster Children's Hospital, an emergency CT scan revealed that the tumour had spread from her liver to her bowels. Three separate tumours bulged in her small body, two in her liver and one in her bowels- extending her little tummy. The one was bleeding and Eden needed a blood transfusion right away.
The team of doctors surrounded us and let us know that Eden was very sick and that she had their full attention. They let us know that she would certainly have chemotherapy as part of her treatment plan. My heart sank. Tumour? Chemo? So much devastating news and all on the same day. Eden had been fasting all day and now she had to continue to fast until the next day so that she could get a biopsy and a PICC line inserted.
That first night in the hospital, I lay awake the entire night- begging God to let me keep my baby. At some point in the night, I decided to give up control. I knew in my heart that no one loved my baby more than Jesus, and that He'd take the very best care of her- whether it would be on earth or in heaven. I envisioned myself placing her in His arms. Peace flooded over me and I knew that He would be near to us through everything. I could rest in His goodness. His good and loving character did not change, only my circumstances had.
Photo credit Lisa MacIntosh Photography
The biopsy results revealed that Eden had B-Cell Non-Hodgkins Lymphoma. Stage 3. It's an extremely fast growing cancer and the doctors believe that the tumours grew over a course of a few short weeks. It's also a curable cancer that responds well to chemo. The protocol was 1 light round of chemotherapy followed by 4 rounds of high dose chemotherapy. This would take place over the next 4-6 months. We were told, "a very rough ride but high cure rates."
It broke our hearts to tell Eden that she had cancer. She had no words -but her trembling body and quiet sobs expressed everything she wasn't able to say. Together we sang in shaky voices, "Tis So Sweet to Trust in Jesus". While singing, I focused so hard on staying strong for Eden that the last line of the song escaped my memory- but Eden remembered it and sang it out alone in her sweet little voice, "Oh, for grace to trust Him more". That has become my favourite line in the song.
Eden's hair loss was devastating to her. It started falling out in chunks on Easter Sunday. Through her experience with hair loss, our initiative Booboo's Beanies came into existence.
The end of treatment came not even 4 months after diagnosis. What a celebration! Our nurses placed a banner on our door and many of our wonderful hospital staff signed it with encouraging notes.
Today marks the one year anniversary of our diagnosis day. So much has happened over that time. Biopsies, PET scans, CT scans, sedated lumbar punctures, chemo, nausea, hair loss, fingerpokes, week-long hospital stays, ultrasounds, encouragement from friends, new friends, the launching of Booboo's Beanies, a Disney trip. Eden is being monitored by ultrasounds every 3 months. She just heard the good news that she doesn't have to come in every month for blood work, now it's every three months.
If your child has been recently diagnosed with cancer, I encourage you to not allow your mind to wander to the "what if's" and the "if only's". Stay in the moment. There is joy in the journey and you will meet the most incredible people along the way.
Our eyes have been opened to the world of childhood cancer. We have fallen in love with all the kids and families we met along the way. When I reflect on them, I think of Shakespeare's quote, "How beauteous mankind is. Oh brave new world that has such people in it!". We want to make a difference in the world of childhood cancer. It begins with awareness which is part of the reason why we share our personal story so openly. We've learned from personal experience that "No one fights alone". We all need each other. We can't travel this difficult path alone. Small actions go a long way. A hug, a listening ear, a gas card, a thoughtful gift, a handwritten card. These things bring smiles in a hurting world.
And smiles change the world.
