As a mom to a daughter with Down syndrome, I became accustomed to life in a clinic setting early on. When my daughter was just four weeks old, she had been to her first genetic specialist, specialty developmental pediatrician, and speech therapist. During that time we had also lined up appointments for her to see a cardiologist, audiologist as well as other therapy services. Not at all what I was expecting when I became a new mom; but we adjusted well, and we were very thankful for her overall good health.
Children with Down syndrome often face a magnitude of health related issues. Navigating through disability with additional special medical needs is challenging, especially when the additional medical needs can be serious. Outside of that all, as parents, we strive to maintain as close to normal lifestyles as we can while supporting our children as they grow.
While my daughter was born without any serious medical needs, it became evident at a young age that her immune system was very weak. The common cold turned into croup or pneumonia. A typical twelve hour flu bug could stretch over six days. A common cough or a runny nose were often signs of a much larger battle to come. Her body was not strong enough to fight off germs and viruses the way others could. I dreaded winter because I knew what it would consist of for my child. One Christmas, she was hospitalized with croup, pneumonia and influenza all at once. And she never fully recovered. A few months later, after several specialty appointments and lab draws, she began getting bone marrow biopsies until it was discovered that she was developing leukemia.
That is when I learned that children with Down syndrome pose a higher risk for developing leukemia, largely based on genetics. A short time later, we found ourselves living in a hospital and fighting for her life once she had fully transitioned. Everything I had learned about my child up until that point would help us get through that difficult phase.
Parenting a child under these unique circumstances taught me to be stronger than ever. I reached out to fellow moms of children with Down syndrome and leukemia, and with their input and personal experiences, I comprised a list of the top 10 things parents and caregivers of children with Down syndrome and leukemia need to know. While this is one list of ways to help a child with Down syndrome and leukemia navigate through treatment, there are many ways families manage the fight.
1. Advocate. Advocate!
This is the first item on the list because it is perhaps the most important. We know our kids best, and if something doesn’t feel right in our heart or stomach, then it probably isn’t. Parents of children with Down syndrome may already be well versed in advocating for their child. If done respectfully, advocating will be the strongest component of this fight. I remember three days into the start of treatment, a young resident doctor suggested that my daughter get an NG tube for feedings and medicine because “…clearly, she just wasn’t going to cooperate.” I was against it. And once someone tells me that she “can’t” do something, I always feel compelled to prove them wrong. I knew she needed a little bit of time to adjust and that she would eventually come around. Even though he pushed hard for a feeding tube, I stood my ground and our lead oncologist agreed. She adjusted days later, eating by mouth and taking all oral meds just fine. I knew better.
Just because one medical professional says it should be one way, does not mean the rest of the team agrees. It also does not make it the best option for the child. If you feel your child needs additional services such as speech, physical or occupational therapy to aid them during treatment, make a request. Ask questions, be heard and get additional opinions from team members. Explore options in advocacy. A parent’s voice absolutely counts, and the lines of communication need to be wide open across the board for everyone on the child’s team. Our oncologist even thanked me at the end of treatment for my constant input and for helping her understand my daughter on a larger spectrum.
Life certainly changes after a cancer diagnosis is presented. Just as parents adapt to a Down syndrome diagnosis, learning to adapt to a cancer diagnosis is another phase to endure. I had to allow myself to fully explore every emotion I encountered as I heard that my daughter had leukemia.
Not only were we helping our daughter developmentally, we were then trying to work in the lifestyle changes that cancer sprung on her. In time we acclimated ourselves to the unexpected changes made during treatment. Learning to adapt took time, but our adjustment became routine before we were even aware of it.
3. Reach out.
It is also important to reach out to other parents who are going through or have been in a similar situation. Many Down syndrome organizations will connect families and help out any way that they can. Thanks to the internet and social media, we can connect with people across the globe. This makes it much easier to access information from someone who has been there. While no two situations are the same, it helps to get support and camaraderie when feeling isolated. Stay away from Google and call on those who have gone through it.
A fellow mom of a child with Down syndrome and leukemia had heard about my daughter’s fight during our first round of treatment. She reached out to me and showed up at the hospital one day with bags full of everything we would need to make it through that round. When she came in our room, she dropped the bags and gave me the biggest hug. We cried, laughed and visited for two hours. She gave me tips to surviving the grueling rounds, which night nurses she preferred and even what pizza restaurants had the best delivery service. It was everything I needed in that moment.
Accessing support for myself, my child with cancer and the rest of my family was critical. Families in these situations endure a great deal. It is unrealistic to expect to carry the weight of it all by one’s self. Whether it be a hospital therapist, family doctor, family or friends, lean on those who will offer support. Ask for help even though it may feel bothersome.
Know that support comes in many forms. People may offer to clean your home, bring you meals, babysit or offer an open ear or shoulder to cry on. Connect siblings with appropriate support as well as they also sustain trauma as well. Finding support that truly works for yourself and your family will help you cope with life during treatment and after.
5. Keep The Routine.
I know it sounds hard—maybe even crazy—but routine is huge, maintaining it is even bigger. My daughter was used to a very standard routine prior to her hospitalization. Her naps, bedtimes, bath times, meals, therapies, etc. were always done at the same time. It worked great, and it was important that we try to stay on a similar schedule or at least try to develop a new one. With a little planning and working with the family coordinator at the hospital, we were able to schedule in-hospital therapies, dressing changes, baths, meals, meds and naps in a way that worked with her hospitalization and treatment plan. When we would get short breaks at home, we kept that schedule nearly the same.
The family coordinator put a large dry-erase calendar in our room and requested that any staff members check with our nurses and us before scheduling themselves on it. Our team knew what to expect on a typical day and so did we. We could also set certain times for visitors. There was little room for error or surprise, and we were able to have a little bit of control (to the best of our ability) during a time when it felt like we had lost all control. The key to maintaining routine is by staying as consistent as possible. And, of course, when plans and schedules change—because they will—don’t stress. Adjust and overcome.
6. Get Creative.
Creativity played a large role throughout treatment for us. Whether we were thinking of ways to combat the boredom of in-room isolation or conjuring up plans to help ease the stresses of life in treatment, we were forced to get creative numerous times. The transitions that transpire for a child with Down syndrome and leukemia are challenging, and any way that anxiety can be reduced is good news for everyone.
For instance, at one point we teamed up with the Child Life specialists and came up with a plan to put face masks on everything that my girl adored—baby dolls, stuffed animals, jack-o-lanterns, etc. You name it, it probably had a mask on. All of that just to help her wear a face mask when her counts were low. Child Life specialists were a great asset to our team thanks to their advice and creative skillset.
7. Set Boundaries
It is essential that you set boundaries for friends and family during treatment. Children with cancer are susceptible to viruses and unwanted illnesses. Children with Down syndrome and leukemia are especially susceptible to the same and more. Setting strict, consistent rules to protect your child is necessary to help keep harmful germs at bay. It may mean that holidays and birthday parties are missed; it may also mean that not everyone will understand the limits, but it is a surefire way to help reduce the risk of unnecessary sickness.
Helpful tips: Have Purell in every room of the house, in vehicles, on keychains and in bags. Have visitors immediately wash hands or use antibacterial gel before coming into contact with your child. Do not allow your child to share drinks, food or utensils with others. Inform the hospital of your own personal visitation rules so that they can carry out your expectations. Putting a note on the outside of house doors and hospital doors is another way to let all visitors know that they need to knock and wait outside until they are welcomed in.
We also had many people drop meals off for us during treatment. Those who were dropping meals off knew of our boundaries prior to arriving at our house; therefore, people knew not to bring anything if they had even the slightest cold. We set a cooler outside for meal drop offs and a hamper outside for anything else that would be dropped off. We were fortunate to have people contact us prior to arriving. They would let us know they were coming ahead of time and also allowed us to ask any questions about the possibility of germ contact.
Many times, I felt absolutely insane. I knew that I could not protect her from everything, but I certainly tried my best to keep her safe. Those tiny risks are not worth it if they can be avoided, and luckily for us, people were understanding of our boundaries.
8. Take Breaks
Give yourself a break. Parents under these circumstances are often stretched to the max and beyond. Allow others that you trust to help out when they offer. Many people really do want to help, but are not sure how. Take advantage of hospital staff and volunteers as well. Even a fifteen or thirty minute break was a nice way to refresh my brain.
If time and resources allow, of course, a longer break is very beneficial for the body and mind. Go out for dinner or go home for a night. Go shopping or relax at a coffee shop. Refresh and recharge as often as possible. There is no shame in giving yourself a healthy break.
Communicate to the child what is happening to them. Even if we think they do not understand us, keep the conversations simple. For example: “Nurse Ashley is going to bring your medicine soon,” or “Let’s call our friends at child life to help us change your band-aids,” or “The doctor is going to do a checkup now to make sure you are feeling good.” I learned early on that I could not surprise her with a dressing change, oral med or anything else treatment-related for that matter.
We often referred to hospital staff members as “friends.” I also tried to put as positive a spin on everything as I could. Like most children with Down syndrome, my daughter responds well to positive situations and reinforcement. If I knew something was not going to be pleasurable for her, I let her know ahead of time but I also assured her that everything would be okay and that we would be there. By communicating to her what was going on in her life, I felt she was more receptive to her surroundings and less surprised by things unexpected.
Communication is also vital between parents and the hospital staff. Not every doctor, nurse or other hospital staff member operates the same way. While they all work under the same protocols, they may have different methods than their coworkers. Make sure that any important messages, notes or requests about your child are known across the team at all times.
Because of the additional medical needs children with Down syndrome face, it is also imperative to build and maintain a relationship with all of their physicians and/or nurses they may see regularly that are not associated with the child’s cancer. Even though they may already be up-to-date, ensure that all medical professionals involved in the child’s life are informed of what is going on during treatment.
It is also important to openly communicate with your spouse, partner or additional caregivers. This helps everyone stay on the same page and keeps those closest to you informed.
The best way I could support my daughter during her cancer treatment was to play. When we were in the hospital, I moved in many of her dearest toys from home, as well as her favorite books and puzzles. We also integrated her regular therapies through play. In our brief time back home, we did the same. Playing helped to distract her from her life as a cancer patient. It also helped preserve some of the youth that leukemia tried to steal. What I wanted most for her was to still be a child and experience the things that children do. We made finger paint masterpieces and play-doh messes. Most nights we had Pandora dance parties or played basketball from the hoop that hung from our door. If we were too tired to play, we rented a movie and made a giant bowl of popcorn. Stay active, positive and encourage play as often possible.
Becky Carey is a wife, mom, author and business owner. In her spare time, she enjoys making memories with her husband and three kids. She began writing a blog in 2011 after the birth of her daughter, Tessa, who was born with Down syndrome and who later became a cancer survivor. Shortly after she launched her blog, she published her first award-winning children’s picture book in honor of her daughter called 47 Strings: Tessa’s Special Code. Becky is a proud advocate who has had posts featured on websites like The Mighty.
September 2015: Tessa has officially been in remission now for just over one year. She is doing well and has made remarkable progress since defeating leukemia. Tessa also just began her second year in school.