Almost two-and-a-half years ago my niece Tillie was diagnosed with leukemia. As she reaches the end of her treatment & the beginning of a life free from cancer, I want to reflect on the journey. My memories are just a glimpse into the reality that Tillie, my little sister Emily, & often my stepmother Carolyn, lived every day. I barely scratch the surface of Tillie's story but my feelings & experiences are all I have to share.
In retrospect, the journey for me begins with our family gathering at the beach in July of 2010. Tillie & I had so much fun soaking up the sun & waves together. We splashed in Puget Sound & played in the warm sand. Tillie was her usual rambunctious, bossy self. No one would have ever thought she would be diagnosed with cancer six short weeks later.
I would look back on this day again & again, searching for signs of her illness in my memories: she looked pale, she needed to be cuddled for warmth after swimming, she was all tuckered out on Grandpa's lap. None of these things were cause for concern, but I wanted to find something that hinted at the leukemia cells raging in her little body. I mentioned my astonishment to one of Tillie's doctors that just weeks before she was active & healthy, playing on the beach. He explained that the bloom of cancerous cells can occur so suddenly & multiple so rapidly that it's possible she did not yet have leukemia on that sunny July day.
I was standing on my back deck when my little sister called with the news that Tillie was being transferred by ambulance to Mary Bridge Children's Hospital in Tacoma. Emily explained through scared sobs that they thought it might be cancer. My heart dropped in my chest & I immediately feared we would lose her. At the time, I could only imagine what my sister must have been feeling -- having a child of my own now, I can understand her absolute terror.
My memories of those first 24 hours are chaotic & visceral, but certain pieces will always stand out. I remember that Tillie was so pale her ears were almost translucent. I remember hearing that when Tillie was admitted she had no healthy white blood cells remaining in her body. The doctor spoke of what a resilient fighter Tillie was -- how she was talking & complaining, while an adult with the same blood counts would likely be dead. It was surreal to scour the internet for information about childhood leukemia & to overnight go from knowing next to nothing about cancer to praying specifically that Tillie's blood work come back as ALL & not AML (a much more rare form of leukemia with a lower survival rate).
Tillie was diagnosed with Acute Lymphoblastic Leukemia (ALL) on September 4th, 2010, two days after her fourth birthday. She was admitted, diagnosed & began treatment within 24 hours.
After a day in the ICU, Tillie was moved to the pediatric oncology ward where she remained for 5 weeks.
A port was inserted into her chest so that chemo drugs & antibiotics could be given intravenously. Due to both the chemo & multiple infections, exhaustion & irritability came & went, as did her appetite (sometimes the only thing she wanted to eat was string cheese). Three weeks into her treatment we had a scare when the site of
Tillie's bone marrow draw became badly infected & surgery was
necessary to drain it. At the height of the infection Tillie had so much pain that a morphine drip was administered -- we all hated to see her in pain, but it was also difficult to see her doped up with morphine.
While
Tillie was often cranky, she was also cheery & even energetic at times. Numerous games, movies, books, toys & art
projects were indispensable in providing entertainment & keeping her
spirits up. Many visitors
dropped by during this time, helping to break up the long days. I
visited often during this time. When her neutrophil count was
especially low, she was confined to her room to lower the risk of infections. On one memorable day of
confinement, we built a fort using hospital sheets & for a little
while her grumpiness subsided while we played & snuggled in our cave.
On October 13th Tillie was able to go home! I was working from California that day & had to miss the excitement of her first time outside in over 5 weeks. Her outpatient treatment included medications administered at home along with weekly visits to pediatric oncology at Mary Bridge. While she was now outpatient, there would be multiple hospital stays throughout the next couple years, both for treatments & for scary times when her neutrophil count dipped so low that she was defenseless against infections. It was difficult to see the effects of chemo on our sweet Tillie girl. Not only was much of her cranky, erratic behavior due to chemo but she lost her hair
& her little face & body swelled. It's strange to see how different she looks from photo to photo, depending on her dose of chemo at the time.
Throughout
all of this Emily provided the constant support & cheerleading
that Tillie desperately needed, even while scared & exhausted
herself. She learned how to administer numerous medications from home
& got past her gag reflex to change the dressing for the infection in Tillie's back (it definitely required a strong stomach). All
this while also attempting to maintain some normalcy at home & care for
Tillie's younger brother. Ravis was a trooper, being past around from
daycare to family member, so that Tillie could have her mother's
undivided attention.
Tillie's cancer has spanned more than a third of her life -- it began when she was just barely out of toddlerhood & has continued into her first year of school. When Tillie was first diagnosed, the hospital told us that her chances for survival & a full recovery was 96%, provided she complete the full treatment plan. The phrase "full recovery with no side effects" went from being abstractly medical to intimately personal. It meant that not only would my niece grow up, but also that cancer would not define her life and future.
Tillie had her last chemo treatment in January & the hospital staff threw her a little celebration party. I wasn't able to go but had to share the photos below, especially the one with the always awesome Dr. Irwin. Tillie will continue to have monthly blood draws at the hospital & her port will not be removed until summer. Eventually she will go just once a year to have her blood drawn.
Last weekend we had a family party to celebrate.
Tillie raced around the yard, pink boots pounding on the grass, balloons flapping in the wind, giggling wildly, looking very much like a tornado of health & happiness.
Along this journey, hundreds of people have rallied to support Tillie & her family. Through prayer, encouragement, financial support & understanding, a community of love & strength has buoyed Tillie to a full recovery. It makes me smile to think so many people have been able to be a part of our special little girl's journey -- to see her exuberance for life, to feel hope for her recovery, & now to rejoice that she is cancer free with a full & healthy life ahead of her.
Exuberance, hope, joy -- these are the gifts that Tillie brings to the world & will continue to bring, thank God.
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