Thursday, October 30, 2014

Take a stand Thursday

(Tessa a 14-year-old girl who awaits a liver transplant)

As we draw close to the end of October, this means we are near the end of Liver Cancer Awareness month too. Help me rock out one of these last days by helping me "take a stand" for a mother, Dawn McQuinn, who's taking a stand for her very own daughter, Tessa, in hopes of finding a liver for the liver transplant Tessa awaits.

Dawn recently wrote a letter to CBC, Canadian Broadcasting Corp. similar to CNN, to gain national awareness for the type of liver cancer, FHC, Fibrolamellar Hepatocellular Carcinoma , Tessa is battling. More so than anything to gain awareness for organ donors as well. And I can see why. 

Read below Dawn's letter she sent.

Tessa's Story: A letter to the CBC National

I am writing to you about a story of a young 14 yr girl named Tessa Williams. She lives in Black Creek (near Courtenay BC). She has an incredibly special message to share with the world.

Since Tessa was a young girl at the age of 5, she had regular stomach nausea and pains upon awakening and beginning school almost daily. This continued over the years up until she was 13. We sought medical direction but was unsuccessful in finding out what it could be. The best answers we could find were possible abdominal migraines, anxiety/depression and nervous stomach etc.

In 2013-1014 Tessa started highschool and her stomach discomfort increased into worse pain and nausea. At the same time, she was watching her dear grandfather, who had lived with us since she was very young, pass on. Simultaneously, a friend at her school was tragically killed in an automobile long boarding accident Jan 2 ( Ciaran Martin). His family donated all of his organs to BC Transplant as a wish he made clear prior to his death. During this time, she became very close to Ciaran's mother wanting to help raise awareness regarding organ transplant in small ways she could. She felt passionate that youth know about the registry and tried to get the word out to honor her friend in an effort to give his mortal loss meaning and leave a legacy to others.

Tessa was becoming very anxious, depressed and physically unwell. We sought mental health along with our family doctor to find some answers. Still her blood work came back normal with the exception of slight anemia and slightly elevated liver enzymes. We took her to a psychiatrist, a counsellor and our local mental health for help. She went on a variety of anti depressants, and other medications to try to find some relief thinking that her abdominal discomforts were psychosomatic (related to her brain and circumstances of late). These remedies did not help and symptoms became much worse. Then the vomiting began…

In the early summer of 2014 her doctor and I agreed that we should take a look inside to see if there is anything going on and referred her to a pediatrician. Tessa had an ultra sound on her abdomen with in a month.

Later that summer, just as her 14 Birthday arrived, her results had also arrived. A very large mass was found on her liver. She missed her 14 b day plans and was immediately sent to BC Childrens Oncology Dept for review by Dr. Melissa Harvey. Tessa went through a number of CT scans, MRIs and a PET scan all with in a few days. The confirmation, that a mass was present, very large, near her hepatic vein and to which suspiciously resembled an extremely rare form of liver cancer that only strikes young adults and teenagers, was made.

FIBROLAMELLAR HEPATOCELLULAR CARCINOMA strikes aprox 200 young people annually WORLD WIDE. The only possible cures are removal of the diseased liver or a complete liver transplant. It is a cancer that has a tenancy to metastasize and re occure over time. Our family was absolutely devastated with proportions of pain that are indescribable.

Tessa was in surgery under Dr. Eric Webber and Dr. Charles Scudamore at BC Children's Hospital with in 10 days. On Aug 28 2014, Tessa had 2/3 of her liver removed. The large tumor was removed along with all of her lymph nodes (that were clear) but unfortunately, there remained "positive margins". This means that the hepatic vasculature appeared to have been infiltrated by the cancer cells and concerns that fibers of the cancer was remaining in her body. It was too dangerous to remove any further liver near the mass as it was too close to the vein.

Tessa recovered from her surgery well and returned home mid September where she continued to recover at home. She had lost a great deal of weight and her nausea and vomiting continued for a number of weeks.

While she is back at GP Vanier high school persevering to seek a normal teen life.......she finds out that it is not over....

Tessa now awaits a liver transplant. This beautiful young girl who was so deeply affected by the loss of a friend, who donated all of his organs, only 9 months earlier and was so passionate about getting the word out about organ donation, has come full circle. Tessa, in a strange twist of fate, finds herself on the other side of the spectrum: as a hopeful organ recipient of the most precious gift of life…....

We will be returning to Vancouver Nov 16-19 for her transplant preparations under Dr. Charles Scudamore, where she is on the active transplant list here in BC.

There is a facebook support page called Tessas Journey where her friends and supporters can leave her messages and hear her updates. Our local YANA (You are not alone) support system has been wonderful and have asked to do a documentary on her story to help her desire to spread the word about this cancer and organ donation. There is a facebook campaign to try to have Tessa meet her idol on the Ellen Degeneres show to spread awareness. She originally requested it to be her "make a wish" but was informed that although they hate to deny any wish, seeing Ellen is next to impossible.

I am so proud of my daughter for fighting through her fear, and anxiety of all that has unfolded for her at her age and still continues to inspire others. It has been extremely hard to watch her story unfold especially in light of her recent difficult year of losses causing many nightmares and fears regarding her own mortality. Tessa faces her worst fear (literally) as she finds her path directed now to a journey of survival. She has motivated and inspired so many youth as evidenced by her facebook page comments. Tessa is a strong strong young girl who is loved deeply by those who know her. She never asks for help and is always willing to be there for someone else. It is a bitter sweet conundrum.

I am writing to you to seek help in granting her wish to publicize her story......to get the word out about Fibrolamellar HCC and to tell the world, especially Canada, that organ donation is a gift she hopes she receives from the generosity of others who will make an attempt at registering. There are young people dying and needing organ transplants along with the older generation. Canada needs to hear these stories to help make change.

Thank you so much for your time.
Very sincerely,
Tessa's Mum - Dawn 
Black Creek, BC, Canada




Take a stand Thursday replaces Thursday Turtles today on Ashley's Art Closet. 


Tessa made a video in hopes of making her story go viral…
for
liver cancer awareness, Fibrolamellar Hepatocellular Carcinoma
and 
organ donation awareness

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