The following words come from Tessa’s mom who is a special kind of superhero in our eyes. Tessa’s story was featured at the Big Love Benefit on February 26, 2016. Since then, Tessa has received the call and has begun her recovery showing incredible strength and courage through very challenging circumstances. YANA is proud to support Tessa and provide a home away from home for her family. More here.
For the Love of YANA through Tessa’s Journey with Cancer by Dawn McQuinn
“Tessa is going to face some hard times, but she is going to get through them,” said her dear grandfather who was just days from passing in January 2014. Little did we know at that time, those words would hold us tight as we continue to try to reassure ourselves, he knew something we do not.
Tessa was a happy feisty, at times called a fire cracker, of a little girl who has grown up in Black Creek. She laughed, played hard, chased chickens, rode her horse, drove the lawn mower and ATV all with a zest for life that made everyone laugh and giggle at her love for life.
Tessa had another side that she fought through for years, being unwell with severe morning nausea since the age of 4. In the early years, we had come to the conclusion with our doctor that it was “abdominal migraines” since her maternal grandmother suffered terribly from normal migraines. As the years passed, this pattern of morning discomfort did not waver but she would go to school and shake it off waiting until it eased in a few hours, just part of her life routine. Tessa’s life was about to become anything but normal, or stable. It was about to become a state of pure unpredictability engulfed by severe anxiety.
As Tessa closed in on age 12 and puberty set in, the stomach aches and nausea changed drastically and turned into severe pain, nausea with frequent vomiting, weight loss with no appetite and lethargy. In a sudden turn of events, on January 2, 2014, Tessa’s 16-yr-old friend, Ciaran Martin, would be fatally wounded on small dark road in Black Creek as he was struck by a car and thrown meters into a ditch. The sickening news came in… he was not going to survive yet his family, in their time of despair, so generously acknowledged a decision their son had made only weeks before, to be an organ donor.
My heart ached and I wanted to find a way to help the pain of this crushed family. I knew of this wonderful organization in the Comox Valley named YANA and called Marcie right away to see if there was anything they could do to help our friends. They were absolutely amazing and were able to help alleviate some of their unexpected financial burden immediately with love and grace.
We knew very little about YANA at this time, but knew it was a wonderful organization that was supported by the generous people of the Comox Valley who helped families with young children dealing with the worst crises of their lives.
Little did we know that seven months later, after many doctor visits, new pills, blood work and psychiatric consults, Tessa finally had an ultra sound on the area of her abdomen to seek the source of that ongoing discomfort. The results were terrifying, and yet somehow expected… something was terribly wrong with our daughter. When we received the call with the words: “Tessa has a large mass on her liver, she needs to be transferred to Children’s Hospital to rule out liver cancer immediately, we were left numb and in a state of unbelievable shock.
We were sent to BC Children’s Hospital the next day to see an oncologist. This was a whirlwind of terror, uncertainty, confusion, anxiety and numbness all at the same time. We came to the big city and had no idea how to maneuver driving and where to stay as it was August and it was very hard to find accommodation. After days of scrambling, we were able to squeeze the whole family of four into a little room at Easter Seal House with four single beds squeezed up against the wall to which we were very, very thankful. I cannot begin to explain the stress we felt, and how alone and frightened we were all while trying to be strong and positive for Tessa.
I had been doing a crash course in researching and consulting my cousin who is a physician to try and figure out what it could be that ailed my daughter. I kept stumbling on a very frightening diagnosis of primary liver cancer (Fibrolamellar) that is extremely rare in which only one in 5 million have been known to be diagnosed with. It was known to target adolescents and young adults, it was presenting exactly as Tessa’s situation was right down to bloodwork, symptoms and age. I was feeling sick and anxious thinking this was what it was but I kept telling myself, “The odds were slim because it was so rare and I am over reacting.” I am also a registered nurse, so researching is part of every fiber of my inquisitive being and I could not stop searching for answers and understanding.
After a week of CT scans, MRI scans, PET scans, ultrasounds, blood work and so much more we received the verdict on August 20, 2014, ten days after her 14th birthday. Tessa did have a very rare form of primary liver cancer, and yes, it was called Fibrolamellar Hepatocellular Carcinoma. I felt the blood drain from my body, leaving me feeling absolutely terrified. What I had read was not good, and the prognosis was grim.
We were told that surgery could be performed and was her only immediate option. They were going to call in the Liver Transplant Specialist, Dr Charles Scudamore, to come to Children’s Hospital to preform the surgery with the Children’s surgeon Dr. Reggie Webber since it was such a rare surgery in such a young person. There was talk that she may be a candidate for a liver transplant. She was not a candidate for chemotherapy because it has proven to be ineffective and radiation would only cause more scar tissue which would be a contraindication for a future transplant.
We were sent home to pack and get ready for return for surgery to remove the malignant tumor on our daughter’s liver. There were a flight of phone calls trying to organize where to stay, how to pay, how to make it work… all so overwhelming and anxiety provoking, it was hard to even think straight, sleep or eat.
Then came YANA with the loving support of our hometown in the Comox Valley.
Ciaran’s mother and a few other friends from the Comox Valley asked if we had contacted YANA yet. I stalled and said, “Well no, we probably wouldn’t be eligible.” I did not feel right asking for help for myself, after all I am used to being the helper and finding solutions for others. But my friends and colleagues encouraged me to treat ourselves as any deserving family and to call Marcie. The last time I called her I was calling to find help for another friend who just lost her son. How had it come full circle that I was about to call her again and ask if they could help us now? The kicker was we didn’t have organs to so graciously donate, but we had a daughter who desperately needed an organ transplant! A goose bump, hair-raising and bizarre turn of events.
I cannot begin to express the love, compassion, and the ease of guidance that was provided for us by YANA and our community. It literally left our family feeling loved beyond comprehension from strangers that we knew very little. Marcie began to tell us of their apartments, of how they could financially support and give us a private home away from home while we were wading through this unbelievably crazy time in our lives. Things like this happen to other people, not to us! I like to help people, not be helped! That’s all I could think. The hugs, the warmth, the support and guidance provided by YANA leave me speechless to express the gratitude we felt. We could try to stay at Ronald McDonald but never guaranteed and some how staying at the YANA apartments made us feel part of our own loving home due to the amazing outpouring of support that the epic people of the Comox Valley donated to make this nightmare we were walking so much more bearable.
My family and I cannot find words that show the degree of gratitude we feel toward this community and the support of YANA. Even our letters with cheques and keys for the apartment from YANA came with little hearts hand written on the envelopes.
Its been over a year since the surgery and being on the transplant wait list. We go over to the mainland for pre-transplant clinics at VGH and regular MRI scans at Children’s Hospital to watch the liver which has since formed a new tumor as it appears to have begun to regrow. With the love of YANA and our community, it makes us look forward to our special times together spent and memories made at our little home away from home while we wait for test results each time.
We continue to wait with baited breath and with a sense of urgency as we race against time hoping that the cancer does not grow back to the point that they will disqualify her for a transplant. She has had four live donors step forward but all were disqualified due to a mismatch in size of vessels or various reasons. We are not able to canvas for anonymous live donors in BC unlike Ontario where a plea through the media can obtain you hundreds of potential donors. We have done our best to respectfully spread the word for Tessa’s need for live liver donation in an appropriate manner. In the mean time, we are on call 24/7 for a deceased donor.
Tessa remains in homeschooling to decrease stress on her grade ten studies, sees therapists on a regular basis and spends time with myself who has decided to take a leave of absence to stay home with her for moral support.
We cannot thank YANA enough for the huge difference you make in our complicated lives, and we cannot wait to tell YANA that we have had “THE CALL” and start the second round of our lifesaving journey that we know will be made so much easier because of the kindness, warmth and help you provide.
Bless you and our community for the gift of humanity to which we look forward to be able to give back once our path of healing has begun.