While her soccer team was lining up for their first practice of the season (August 19, 2014), my then 13 year old daughter, Julia, was meeting her oncology team at the Medical University of South Carolina (MUSC). Such is the nature of teen cancer.
While any cancer diagnosis is difficult, pediatric cancer significantly impacts the entire family.
It appears unexpectedly and turns the lives of the patient and their family completely upside down. Parents try to meet the needs of their cancer child, other children in the home, and each other while faced with the possibility of losing their child or at the very least, watching their child endure great suffering.
In my daughter’s case, we had very little indication that she was in the battle of her life.
She experienced sinus congestion and some light fatigue for several weeks. She also noticed a couple of swollen glands. Thinking that she must have a sinus infection, I took her to our primary care physician. She and one of her brothers actually went at the same time for the same issue. He did, indeed, have a sinus infection. Julia did not have a sinus infection, but in fact had swollen adenoids and glands that were caused by T-Cell ALL (Acute Lymphoblastic Lymphoma). This diagnosis was made following antibiotic treatment, blood work (normal), a negative mono test, a CT Scan for a possible abscessed lymph gland in her neck, and an adenoidectomy and lymph node biopsies. Once this process started, we had a diagnosis in about 2 weeks and were rushed to MUSC for her to be admitted immediately for treatment.
Julia is the youngest of 4 children in our family.
At the time of her diagnosis, we were homeschooling and our oldest child was preparing to move away from home to start his first semester of college. As a matter of fact, our son moved into the dorm the same day that our daughter had surgery to receive her port, her first bone marrow biopsy, IT (intrathecal – into the cerebral spinal fluid) chemo, and IV chemo.
From a mother’s perspective, this was one of the most emotionally overwhelming days of this journey.
I missed moving our son into his first dorm room because I was with Julia as she went into surgery and received her first chemo treatment. I will never forget the tears I cried as shortly after her surgery, I watched a nurse fully gowned from head to toe with a face shield walk up to my daughter’s IV to start her first bag of chemo.
I remember thinking
You are going to inject THAT into my CHILD?!
You have to go to those lengths to protect yourself and you are going to inject that into my daughter!?” This was a scene that became all too familiar over the next 2 ½ years of Julia’s treatment. I don’t know that it ever got easier to watch, but it certainly became a somewhat normal experience for us. In fact, during the course of her treatment, Julia received over 800 doses of chemo in various forms: IV, IT, oral, and injection. The most difficult for me as her mother were Pegaspariganase (PEG) and ARA-C. Because the PEG could cause life threatening reactions, we were required to keep an Epi Pen near Julia and her nurse kept one in her pocket for the duration of the infusion and for several hours afterward. We had to watch her closely for 24 hours after each treatment. Since we live 3 hours from her treating hospital, I opted to stay in town until the 24 hours passed, rather than risk travelling home with the possibility of a chemo reaction. She received ARA-C by injection (done at home by her parents). This chemo was harsh and made her very sick, often requiring multiple blood transfusions. It was very difficult to inject her with this chemo, knowing how it would affect her.
When studying for my Master’s degree in Health Physics, I took a course in Radiation Biology.
In the course, we looked at how cancer cells grow and how they can be treated with radiation and chemotherapy. My research was in internal dosimetry, a specialization and study of the exposure and potential effects of radioactive material inhaled, ingested, or injected into the body. This coursework prepared me academically to understand the treatment protocols that my daughter endured. However, nothing could truly prepare me to walk my child through this process.
Julia did not need radiation therapy.
She did, however, receive at least nine different types of chemo during her course of treatment. Chemo caused the expected side effects: hair loss, fatigue, changes in appetite and food preferences, etc. Julia also experienced severe nausea from treatment and was hospitalized for symptom management.
As a side note, when an oncologist comments on the severity of a patient’s chemo nausea, you KNOW it is bad, because that is something they see every day.
Treatment was not kind to my daughter.
She spent at least 90 nights inpatient during treatment and battled issues including chronic migrane headaches, several fevers and infections, severe nausea, pill aversion, neuropathy and foot drop requiring leg braces and a wheelchair, severe bone pain and joint damage from treatment, steroid induced diabetes, severe mouth sores, a herniated disc pressing on her spinal cord, flat back syndrome, very low blood counts and transfusions, and a neurotoxic reaction to a medication that she was given. Julia had approximately 55 blood product transfusions and was airlifted once due to critically low platelet levels. She has permanent damage (avascular necrosis/osteonecrosis) to her hips, knees, shoulders, shins, an elbow and a wrist from treatment. At age 18, she is now two years off treatment and has already had bilateral total hip replacements and core decompression (drilling into dead bone tissue to try to stimulate blood flow) in several of the damaged areas of her right knee.
Our family noticed early into the process that the treatment was very hard on Julia’s body.
She lost interest in most things, was isolated by treatment precautions, and was extremely fatigued in addition to all of the other challenges she faced. We often noted that she basically only moved between the couch and her bed.
Observing in the hospital and clinic settings the vast disparities in how the teen patients seemed to handle treatments compared to how the younger patients responded was eye opening.
The teens tended to gather together in a darkened infusion room to sleep, while the younger patients moved busily around the clinic dragging along their IV poles. Although all the patients were receiving the same chemo per body weight, it was clear to me that the teenage bodies had a much harder time with the treatments. Clinic nurses commented that they often observed that chemo tended to hit the older patients much harder than the younger ones. In Julia’s case, she experienced neuropathy effects early on, resulting in the need for physical therapy, AFO leg braces and a wheelchair. She often needed help with activities of daily living during frontline treatment. It made me wonder if there wasn’t some way to treat the teens effectively without such intense challenges to their bodies. I quickly learned that there is little to no research conducted on age appropriate treatments for teens. When I asked the oncologist about it, I was told that there were not any studies suggesting that treatment was any more difficult for teens and older children than much younger children. All that I could think was,
Ok, but there aren’t any studies that say it isn’t either, right?
In addition to physical challenges, Julia faced psychosocial and general wellness challenges as well.
She was often isolated from her peers due to low blood counts and infection risk. She became quite anxious during treatment, manifesting itself in a pill aversion and other challenges. Also, as a general rule, there was very little age appropriate support from our treatment center. The Child Life Specialist tried to help Julia, but was mostly focused on younger kids and overstretched by the demands on her part-time hours. My daughter wasn’t interested in activities available at the hospital (e.g., clown visits, craft of the day, the teen area in the far corner of the playroom (The Atrium). Our treatment center oncology department does not offer psychological support, music therapy, art therapy, regular inpatient or outpatient teen support, or any other mechanism (other than therapy dogs and the previously mentioned part-time child life specialist) to help patients, specifically teens and young adults, cope with the challenges of their cancer journeys. While there were regular off treatment follow-up oncology appointments for my daughter, during treatment and in the nearly 2 years following treatment, she did not receive any support or instruction to help her develop a healthy lifestyle after cancer treatment other than the oncologist or nurse practitioner gently mentioning that she should consider getting more exercise or paying more attention to what she eats. She was, however, referred to the Heart Health Clinic for nutrition support after she was off treatment for almost 2 years. She has not had any real patient education or evaluation regarding wellness/health and exercise, cancer risk and prevention, or possible fertility effects of treatment. In fact, fertility preservation should have been addressed prior to beginning treatment. The discussion was limited to a statement that the Lupron injections she received may help protect her ovaries, in response to my question about fertility concerns.
Due to our hospital’s manner of implementing privacy regulations, we were discouraged from socializing with other clinic families within the hospital campus. Patients were not allowed to visit other patient rooms in the hospital or clinic, although they could visit freely in the open clinic infusion rooms. At one point, efforts were made to place patients into individual rooms in the clinic almost immediately upon arrival.
This practice furthered the sense of isolation, even within the clinic.
Inpatient teens often refuse to visit the hospital playroom, even though there is a small corner area set aside for them. The patient must travel across the playroom, passing through the “little kid” areas to get to the teen cubicle. Visitors from outside support organizations must be scheduled in advance with the social worker. If a visit from them is not requested in advance, they are not allowed to visit you, even if you see them in the hallway. Perhaps if we lived local to the treatment center, our daughter would have had more peer support. There are several childhood cancer charities supporting children from our treatment center that offer activities to encourage the kids and help them get acquainted. The majority of those activities are held in Charleston or Spartanburg, SC. We live several hours away from both locations and my daughter felt so poorly during treatment that she didn’t participate with the groups much. In addition, many of her pre-cancer friends drifted away and she was very isolated for most of her three years of treatment and her subsequent surgeries.
Now that she is a year off treatment, our daughter is starting to renew friendships and slowly make new ones.
She is no longer the innocent girl that she once was. She has faced traumatic, life and death experiences in her short life that her non-cancer friends cannot possibly understand. She is not interested in silly teenage girl stuff anymore. In many ways, she is mature beyond her years and in other ways she is catching up from three lost years of teen life.
Another challenge that Julia and our family have faced together is the death of cancer friends and acquaintances. While social interaction in the hospital campus is generally discouraged, bonds of friendship are forged through shared experiences. It could be the adverse reaction a fellow teen cancer patient had to a medication or blood products or the other teenage girl who helped her through her first hair loss experience. It could be another patient who had a pill aversion, off the charts nausea, or needed hip replacements. When you and your child learn that these fellow warriors have died, it hits you deep in the gut. There are the questions that can’t be answered, such as “Why did they die?” “Am I going to die, too?” There is the constant wondering and worry that the cancer may return and you will have to start the whole process over again. Or even worse, that this time won’t turn out as well as it did before. There is something absolutely heartbreaking about hearing a child of any age ask if someone they know from their treatment center is still alive. It is the essence of innocence shattered.
Treatment has profoundly affected our family.
Our oldest returned home after one semester away at college. He performed well academically while away at college, but felt disconnected from the rest of our family as we walked the life-changing cancer journey together. Homeschooling Julia and two of her brothers during treatment was difficult, because Julia and I were out of town at the treating hospital multiple times a week. In the early months of Julia’s diagnosis, the boys spent some of their time with me and their sister at the treating hospital, some of their time at home, and some of their time at friends’ homes. There was very little stability in their lives at that point.
My husband and I realized that this was having a negative effect on them and made some adjustments to give them a more normal and stable life. Although we never would have asked our oldest son to return home and attend a local college, his decision to do so really helped make it possible for his younger brothers to stay at home and maintain a routine. The boys enrolled in full time dual credit college courses during the second year of Julia’s treatment. They benefitted from the academic challenge of these classes, but they were also thrown into the deep end, so to speak. Thankfully, both are strong students and were able to learn independently at this point. There was just no possible way for either parent to instruct them on a daily basis during this time. I was often at MUSC with Julia and my husband was back and forth between his 2 full-time jobs, home, and visiting us during Julia’s frequent inpatient stays. We were very much in “survival mode” just meeting the bare minimum necessary to get by one day at a time. It was a difficult time for all of us.
My husband and I have made intentional efforts to affirm our non-cancer children and to reconnect as a family and a married couple.
Our family is slowly returning to a more normal life, although our lives will never be the same. We are different people than we were before this journey. That is not an altogether bad thing. We have slightly different priorities, challenges, and a stronger desire to connect with one another and fully appreciate life. It often feels like we missed over 3 years of life during Julia’s illness, immediate recovery, and surgeries. We are pleased to be settling into a more regular routine, although we are still regularly interrupted for therapies and follow-up appointments. Julia’s current medical team consists of 19 providers spread across 3 medical centres in South Carolina and Minnesota.
The treatment journey was incredibly difficult and brought with it many lingering concerns about the future.
However, there were many blessings in the midst of the storms. First and foremost,
I am thankful for the excellent medical care and successful treatment Julia received.
Her survival is a gift that I deeply value. I am thankful that my husband was able to maintain his employment. I am thankful for medical insurance and the generosity of friends, family and even total strangers that provided for our financial needs. We met some of the most remarkable individuals we have ever known through this journey and made many life-long friends. Julia has received opportunities that she never would have had otherwise (e.g. her Make a Wish experience). And finally, I believe that I have found my direction as our family completes our homeschooling journey and I return to the career world. I am committed to advocating, raising awareness, and making a difference to the best of my ability for those facing and surviving pediatric and teen cancer.
In summary, my daughter’s cancer journey and recovery profoundly affected my entire family.
It has been a life-changing and difficult 3 ½ years for all of us. Julia has endured many challenges through the course of treatment, some with life-long consequences. During this journey, I observed disparities in treatment effects and psycho-social support between child and adolescent pediatric cancer patients. I am thankful for Julia’s survival and the way this experience opened my eyes to the unique needs of teen cancer patients and their families.
I plan to be a part of the effort in this country to improve the treatment and survival experience of this age group.
Judith Fulmer discovered her passion for youth cancer advocacy when her youngest child was diagnosed with T-Cell Acute Lymphoblastic Lymphoma, a form of childhood leukemia, at the age of 13. Caring for her daughter and observing the unique challenges faced by teen and young adult pediatric cancer patients led Judith to reach out to leaders and legislators on the state and national level to address their unmet and vastly overlooked needs. She is a strong professional with a background in science/engineering and education and holds a B.S. in Radiological Health Engineering and a M.S. in Health Physics from Texas A&M University. Judith is the wife of Philip and mother of four young adult children. She resides in Marion, SC, USA