'Sophie the Brave' Fights Childhood T-Cell Lymphoma
The story of 2-year-old Sophie Skiles and her arduous battle with T-cell lymphoma pulls at one’s heartstrings while also causing one to marvel at the faith of her Mom, Shelby.
The public first learned of Sophie when a newscast about her was posted online October 20, 2017. (KLTB/abc) It soon made it to Facebook. The story revolved around Sophie’s illness and highlighted a letter of thanks that her Mom had written to the nurses of the pediatric cancer wing of Children’s Hospital, Dallas. (abc)
The news article and its accompanying video on Facebook have received 2.9 K likes and over 20,000 shares.
Shelby was overwhelmed (yet ‘blessed’) with the outpouring of love and requests to assist from folks who read the news article.
Since the newscast posting on Facebook occurred part-way into Sophie’s story, we’ll start back at the beginning.
Sophie’s story: Part one
According to abc, in May of 2017, Sophie’s parents, of Tyler, Texas, took her to the local ER as she was having trouble breathing.
Sophie was immediately transferred to Children’s Hospital in Dallas. There, she was found to have ‘a large soft-ball sized tumor in her chest.’ Sophie was soon diagnosed with T-cell lymphoma, and a chemotherapy treatment plan was set up for her.
The news was totally unexpected and shocking to her Mom and her Dad, Jonathon. Up until then, Sophie had been a healthy, happy, and strong-willed little girl. (Shelby’s FB page)
And yet, Shelby’s theme through this whole process has been: “We have complete faith that God will use this to build a strong and amazing testimony in us that brings Him all the glory. He is good, all the time.” (Facebook)
Some bad news
After 12-weeks of out-patient chemo treatments, and many hospitalizations for fevers, it was found that Sophie’s cancer was not responding to chemo and it was, in fact, spreading.
Also, she had substantial build-up of fluid between the outer lining of her left lung and chest wall.
She was admitted to the ICU on a ventilator and with a chest tube drain, and was given adult-strength chemotherapy. Afterwards, she was also given two rounds of Methotrexate, which, among other things, interferes with the growth of cancer cells.
Sophie survived, but at the cost of losing her ability to do any daily living skills without total help. She was also unable to talk. These were caused by neurotoxicity as a side-effect of the drugs she’d just received.
Shelby said she feared Sophie would die because of the chemotherapy reaction, and not from the cancer itself.
Due to insurance issues, Shelby, in her fragile state, was not approved for physical rehabilitation at Children’s and had to be moved for a time to OAC for rehab, in Allen, Texas.
Some good news
Sophie returned to Children’s in Dallas and her parents were informed that she appeared to be in remission (despite one lymph node that may or may not be cancerous). Four-and-a-half months after Sophie’s ER visit that memorable night, it was time to make plans for Sophie’s stem cell transplant!
Making new friends
While in Dallas, Shelby stayed either at her daughter’s side, or at the hospital’s Ronald McDonald House. The guest house was for families of patients, and helped Shelby get some much-needed rest when other family members could “spell her” for an overnight break.
In being at Sophie’s bedside often 24/7, Shelby made friends with the nurses. She learned to trust them and became thankful for their expert care of her little girl.
She watched the nurses’ gentleness in caring for Sophie, and saw tears in their eyes when they needed to do any painful procedure. They also made sure that Shelby was doing okay and became one of her major support systems.
One night at Sophie’s bedside, as her baby girl slept, Shelby thought on all these things and decided she wanted to write that thank-you note to Sophie’s pediatric cancer nurses.
A synopsis of the letter reads, “I see you. I sit on this couch all day long and, I see you. You try so hard to be unnoticed by me and my child. I see your face drop a little when she sees you and cries. You try so many ways to ease her fears and win her over. I see you hesitate to stick her or pull Band-Aids off. You say 'No owies' and 'I'm sorry' more times in one day than most people say, 'thank you’. (The complete letter can be accessed on Shelby’s Facebook.)
Sophie’s story: Part two
After more than two months back at Children’s, Shelby tells us that Sophie is nowhere near 100% back to normal and that 25% would be ‘optimistic’. However, she says that Sophie has come a long way in her recovery and rehabilitation.
To explain this, Shelby shares that Sophie has shown how much of a real fighter she is. “First, Sophie kicked the cancer into remission. Then, she started kicking therapy.”
“As of today, she has almost complete head control, she keeps her mouth closed and she swallows her spit. Speech is working on tiny bits of water now and she does well with that. She can move all 4 limbs with no pain and tolerates stretching and activities with them.”
“Most importantly, her smile and personality are back. She watches her favorite shows and laughs at her favorite books and iPad videos. She watches everyone that enters the room and listens when we talk to her. We get the occasional ‘No’ out of her and she nods her head for ‘yes’.”
And, Shelby shares the good news that they’ll be leaving soon for Cook Children’s in Ft Worth “to begin a rigorous and scary transplant process that will hopefully eradicate any bad cells and save her life.”
Update: Back in limbo
On 11/17/17, after having arrived at Cook Children’s, Sophie’s parents were told that Sophie’s health was too fragile at this point to undergo the stem cell transplant. It was explained that she would be at high risk for death from respiratory complications during the transplant procedure.
Shelby confidently outlines Sophie’s future at Cook:
Sophie will be transferred to their Neuro-rehab floor.
Sophie will receive daily rounds from both oncology and neurology physicians.
During the wait period for transplant, more chemo will be needed to prevent a relapse.
Due to the neurotoxicity she suffered after her last chemo, the drugs safely available for her will be limited.
A stem cell transplant is her only long term (hopefully curative) option.
In order to receive a transplant, Sophie has to be 100% cancer free and be physically able to handle the process.
Sophie will receive chemo she’s had before, plus methotrexate, in lower doses.
It will be a week by week evaluation basis and as soon as her doctors think she is ready, they will redo her PET Scan and bone marrow biopsy to see if she is still cancer free.
If she is still cancer free she will go to transplant.
If not, her parents and the physicians will discuss the best options to give her quality of life for however long it’s possible.
In facing the reality of Sophie’s condition, Shelby writes:
“This particular hurdle is awful and hard and heartbreaking but, she’s too stubborn to give up so we won’t either. There is still a great chance that this chemo will keep her in remission and we will get to transplant.”
References
https://www.cancer.gov/types/lymphoma/hp/child-nhl-treatment-pdq#section/_322
https://www.facebook.com/sophiethebrave/posts/765516323633725
https://www.stjude.org/disease/non-hodgkin-lymphoma.html
