Tessa Tough: Battling The Beast Within Her
“Nothing can truly prepare you for when disaster strikes, except maybe disaster itself.” — Dawn Booth
Life as we know it can change at a moment’s notice. Fort McMurray learned this on May 3. Whether or not residents have feared for their lives prior; they united in strength to save themselves, and others, on this day.
That strength still shines in the Wood Buffalo region. It shines in the sundogs seen in the winter sky at daybreak. It shines in the volunteers who continue to selflessly help those in need. It shines in the residents who witness progression on new homes being built.
And, like a star, it shines through one brave, Fort McMurray girl who continues to battle a Beast of her own. Her name is Tessa Booth, but her friends call her ‘Tessa Tough’. On August 19, she was diagnosed with pleuropulmonary blastoma (PPB) – a rare childhood lung cancer. She’s my two-year-old daughter, and this is the beginning of her journey, as her story continues to unfold.
The chest tube baby
On July 14, Tessa spent the better portion of a beautiful, summer afternoon out in the backyard with her two older brothers. They were busily playing with the water hose, blowing bubbles, and painting rocks. After being back at home for almost a month since the re-entry, life felt like it used to for us.
Tessa was 18 months old at the time. Later that night, something strange took place.
I had just left the house to go visit a dear friend I hadn’t seen since the Evacuation. It was only ten minutes into our reunion when my husband called. He explained how our daughter was breathing funny, and he couldn’t get her to stop crying.
I drove home and took her down to the Emergency Room at the Northern Lights Regional Health Centre, where the doctors and staff examined her with a chest x-ray.
Quickly after, Tessa was diagnosed with a tension pneumothorax, which meant her lung collapsed.
Reflecting back to this moment, I recall how surprised the medical staff was of her condition. They said things like: “This only happens to one in five million children her age;” and “We’ve never performed this type of procedure on a child this young.”
Things were then happening quickly. I was soon standing beside my daughter, watching blood pool from her punctured chest. The puncture was the medical procedure to revive her left lung. She then had a tube thoracostomy (insertion of a chest tube) placed, until her lung properly flowed air on its own.
Three days later, she was discharged from the hospital and back at home.
Little, ticking time bomb
The next day, I was contacted by Tessa’s pediatrician who had spoken with the ER doctor who performed her emergency surgery. We went down to his office for him to examine her. He told us a computerized tomography (CT) scan had been ordered to be performed at the Stollery Children’s Hospital in Edmonton. My husband and I drove down with Tessa the same afternoon.
July 19 was our first visit to the Stollery. I will never forget looking down at the floor and seeing a sticker of a cat graphic to indicate where we were standing in the hospital. Reality sunk in.
It was the second time in less than a week Tessa was given a general anesthetic. We brought her into the scanning room, and I sat her down on the bed. The last words said to me before I left Tessa alone with the staff were; “Kiss your baby,” told by the anesthetist.
When the results came back, the doctors explained that Tessa had a congenital cystic adenomatoid malformation (CCAM), which is a benign mass of abnormal lung tissue. They explained this malformation was what made Tessa’s lung collapse.
The doctor said it wasn’t an emergency procedure, but he understood we travelled a long distance and was able to perform surgery the coming weekend. On July 24, I spent my 33rd birthday making the choice if I wanted my baby girl to have an epidural for surgery. (Something I thought may have been her own decision one day had she become pregnant.) My husband and I patiently waited.
After surgery, Tessa was brought into the ICE room, which is a step-down ICU room where there is a one to two patient/nurse ratio. She was monitored in this room for two nights. When we spoke to the surgeon, he told us the procedure was quick and went well.
He continued to show us a photo of the cyst he removed, and said he hadn’t seen a CCAM like it, as he described it like a cluster of grapes. During surgery, he also discovered Tessa’s lung had collapsed a second time. He called her “a little ticking time bomb”. My daughter’s life was saved again.
The Final Diagnosis
After Tessa’s second surgery, we were home for two weeks before we had another sudden scare.
As she was healing, fluid had built up around her incision. I was about to step out in the afternoon to run some errands. Tessa got really upset and screamed. She screamed so hard her incision ruptured, which resulted in lung leakage. A quick trip to the ER with another chest x-ray procedure was followed by an appointment with her pediatrician, and she was assessed to safely go back home.
Exactly one week later, we received ‘The Call’.
It was a call from Tessa’s now oncologist letting us know we had to bring Tessa back to the Stollery for a positron emission tomography (PET) scan. He said based on the pathology from the CCAM surgery, there were some abnormalities. And without revealing too much over the phone, we had a week to prepare for our upcoming trip.
It was my husband that pieced it together. Based on his online research, we suspected PPB may be the cause of Tessa’s recent events. He discovered only 50 children globally are diagnosed with PPB each year.
As Tessa’s oncologist began to explain more to us we learned Tessa’s lung surgery pathology had been sent to researchers at the Children’s National Cancer Institute in Washington, D.C., to determine her diagnosis. The Institute also provided the protocol for her treatment.
The researchers in Washington are currently studying Tessa’s pathology to determine the cause. Sometimes PPB can occur without any other conditions in the individual or family, but it can also be due to an underlying mutation in a DICER1 gene.
She has TYPE II PPB, which has both cystic and solid parts. At diagnosis, Tessa’s PPB had just begun evolving into the second stage. The latest research shows about 50 to 70 per cent of children with Type II and Type III PPB are cured.
It was a harsh reality having the news solidified for us. My husband and I went into the appointment that day hoping we were only there for the doctors to say, “We just wanted to be sure.” And then, it was said out loud. Tessa’s oncologist told us that it wasn’t our fault. However, our youngest child had cancer, and we’d soon meet the team of professionals to help us through it.
The Tessa Tribe and her Army of Angels
The next day, Tessa had surgery for a third time to have an implanted venous access device (IVAD) inserted. It’s a small device that will stay completely beneath her skin, until after her chemotherapy treatment is completed. Its use is to create an easy access to her bloodstream, where medical professionals can give fluids, medications, blood and platelets transfusions, and IV nutrition. Blood samples are also taken from it.
On August 21, she had her first chemotherapy treatment.
The following couple of days blurred by with numerous meetings with over a dozen of pediatric oncology professionals – several oncologists, nurses, pharmacists, child life specialists, social workers, dieticians, and others – who were specifically assigned to be on Tessa’s team.
We decided to publicly share the tragic news of our sweet little Tessa on August 31. We had an outpour of love and support sent to us in many different forms from across the globe - a candle lit in the Cathédrale Notre-Dame de Paris, messages of hope shown in wooden stars from New York, a running man giving his all to complete a local marathon in Tessa’s name.
She inspires hope and receives plenty of love each day. And the support has poured in. It’s poured in for her in the means of hospital and home visits, thousands of stickers from local residents and fellow Canadians, a collection of knitted and cotton hats, homemade meals and baking, bouquets of flowers, stuffed animals, special packages, ‘Get Well’ balloons, handwritten cards, Christmas lights and decorations, rides to airport and Edmonton, hundreds in gas and food cards, and much, much more. We’ve had fundraising support come from my husband’s work, social media silent auctions, by-donation ‘Tessa Tough’ car decals, and from other Alberta businesses and charity groups.
To all our family, friends, medical professionals, colleagues, and perfect strangers; we thank you – each and every one, for each and every action. Sometimes we don’t know how to say it directly, but we are grateful. Grateful that so many people have selflessly taken their time to show us, and remind us, that we are not alone in Tessa’s cancer journey.
Today, and now – Life through the treatment
Nothing can truly prepare you for when disaster strikes, except maybe disaster itself. And maybe had I not just been through the Fort McMurray wildfire, I could not handle all of this the same way. Since the end of August, Tessa has been hospitalized majority of the time - locally and in Edmonton. If she’s not getting treatment, she’s been admitted due to having a fever or catching a virus.
But through every admission, needle poke, blood, and platelet transfusion, chest x-ray, feeding tube insertion… through every single step she takes to get her strength back after treatment; I see her smile. When I see her with her brothers – who are both truly the natural remedy for her health - I hear her laugh. I look at her, and see the strongest, princess warrior. I see her strength shine bright and think to myself, she’s got this. I got this. We all got this. Some days are really good, and some are really bad; but together – we can battle this Beast out of her.
Tessa’s expected to be completed treatment around the one-year anniversary of the Fort McMurray wildfire. And when she rings that victory bell from the Stollery Children’s Hospital, she’ll do it loud enough for everyone back home to hear.
If you’d like to make a donation in Tessa Booth’s name, the Kids with Cancer Society (www.kidswithcancer.ca), Angel Flight Alberta (www.angelflight.ab.ca), and Haying in the 30’s (www.hayinginthe30s.com) are non-profit organizations and societies who have helped her with accommodations and travel.
- Tessa enjoys an orange freezie in the backyard at her Fort McMurray home on July 14.
- Tessa during her first visit at the Stollery Children’s Hospital on July 19.
- Tessa with her mother Dawn after her remaining hair was shaved off on September 3.
- Tessa with her brothers Landon (left) and Dawson on September 22, after a long visit away at the Stollery.
- Logan and Laila Fields with Dawson and Landon Booth supported ‘Tessa Tough’ during their school’s Terry Fox Run on September 29.
- Tess tries on her knitted elephant hat sent from her great aunt Jan Williamson on October 4.
- Pediatric RN Ashley Robertson with Tessa on October 29 during a fever admission at Northern Lights Regional Health Centre.
- Cancer Patient Navigator at Alberta Health Services Janice Petruk with Tessa during her routine blood work appointment on December 20.