She Has Cancer: Post 3, Series 1
It comes back in glimpses, moments that flash like a snapshot when you least expect it. Four of the worst words a parent can hear: "Your child has cancer." Our daughter was 7 when she was diagnosed with Leukemia, and our lives were changed forever. Here are some things that helped us make it through the journey:
TOOLS AND TIPS FOR PARENTS
1. BRIDGE THE GAP
When your child is diagnosed, people genuinely care and want to know what is going on. As a parent, your energy is sapped by hospital visits, administering meds, comforting your child, learning as much as you can, managing family, your job, and just staying on top of everyday life minute to minute. Caringbridge is a FREE website where you can write updates as often as you wish that everyone can see, and they even have a sign in book so you can see who has visited. It helps both you and your child to feel less isolated but conserves your energy (this site is also free to anyone, and is great with serious illness or eldercare).
HopeCam https://www.hopecam.org/about-us
When children diagnosed with cancer are able to stay connected, research shows that they experience less depression, stress, self esteem issues, and loneliness. HopeCam is a non profit organization that provides tablets with cameras to children, helping them socially connect with classmates and teachers. It also allows them to establish a regular cadence of communication and participate even though they physically can't be there. Their classmates benefit as well, as their eyes are opened to real life experiences and challenges beyond the classroom.
2. TAKE BACK CONTROL
Stay organized and put things back in your hands. One very effective way to do that is to use a 3 ring binder with tabs, and keep it with you at the hospital or doctor visits. It is such a chaotic time, with lots of information coming at you. Having a place to immediately put what they give you in an organized place keeps it at your fingertips, and just as importantly, gives you back some control. Make sure one section is just paper that you can take notes-doctors, nurses, and techs take you much more seriously when you are writing it down or asking "how do you spell that again? What is that for? What is your name?" Recommended sections: Notes, Roadmap (they usually provide a printed copy of your child's treatment protocol with spaces to check off when you administer meds at home), Medications, phone list, doctor names/specialties, prescriptions (and where to get them-some meds are unique and require a special pharmacy), important things to remember (can be journaling or just things you don't want to forget, like use the pill splitter in the cabinet every Friday). For the first year, we literally took notes everyday and just kept the newest date up front.
Find ways to help your child feel they have some control over what's happening.
A child diagnosed with cancer is told what to eat, when to eat it, when they can go to the bathroom, what, when, and how they will be given medicine or endure procedures, if they can be around people, or go to school. Their bodies undergo changes from their treatment or medication, from weight loss or gain and uncontrollable anger from meds or suffering, to losing their hair, feeling sick, weak, or isolated socially and physically. It can be as simple as what pajamas or socks they want to wear, and if they can only have a smoothie, getting to decide what kind (within the medical guidelines, of course), or even whether they get their shot in the right or left leg. A word of caution: only offer what you can give, for example, don't offer IF they can get the procedure or not, but if they'd like it in 1 or 5 minutes.
One terrific solution we came up with is that every person who wanted to enter my daughter's hospital room had to allow her to take their picture with a polaroid camera. It was about $1 a picture but friends, classmates, and family were desperate to show support and donating film was a tangible way they were able to contribute. It allowed her to continue to be social and the staff really opened themselves up to her. These days, an iPhone could easily achieve this but we literally taped the photos to her door and all over her room, which brightened the walls and chronicled her journey. It also gave visitors and the medical staff something to talk about besides all things medical; they were able to relate more on a personal level. Once out of the hospital, she used it when she felt like it, even at the treatment center, and gave pics away.
3. GIVE BACK
My sister in law taught my daughter how to make earrings and bracelets (actually ones you would want to wear) because the days can get really long and TV only goes so far. That was an incredible blessing and way for her to connect with those around her, both adult and child. It empowered her to be able to give something of herself. My startled husband woke up one night at 3 AM on the hospital chair. Our daughter was surrounded by laughing, talkative nurses and staff all making requests for jewelry, chatting away happily. It was one glorious glimpse of joy in the midst of a long, torturous segment of treatment.
As crazy as it sounds, making cards for the elderly or infirm, participating in a fun walk (even just going) to raise funds, or any health/treatment approved activity helps "the patient" see beyond their situation and can combat feelings of helplessness, increasing self-worth and overall happiness. How much you can do depends on where your child is in their treatment protocol, but you can always do something.
4. MAINTAIN THE CORE
Preserve what's most important, and don't apologize for it. Be clear about what you need. When people discovered that our daughter was diagnosed with cancer, I was astonished at how many of them began crying and seeking comfort from me. Of course, it's a natural human reaction and while I did the best I could, inside I was thinking what the hell, it's my daughter who may die and I'm comforting YOU? Don't feel bad saying no when someone wants to come and visit and you are tapped out, or if they make a crazy offer you just can't accept. If there was ever a time that you can refuse with good reason, it's now.
As best you can, try to take care of yourself. As a mother of 9, I know how challenging that can be at the best of times. When your child is in treatment, you are basically in triage; focus is on saving your child's life through hard work, perseverance, and medical intervention. Here, microaction is your best chance for success. If Child Help came to sit with my daughter for 15 minutes, I'd take the stairs and go for a quick walk outside (it was the 5th floor). If someone came to visit, I could step out to grab some coffee down the hall after making sure our daughter was comfortable with that person and was okay to visit.
5. ACCEPT HELP
Our school community was amazing and offered coordinating meals for our family, made cards for our daughter, and so much more. I am very independent (my husband would say stubborn) and it can be hard to say okay when the offer is made, but accept help! It's how those around you show that they care.
6. PRIORITIZE
Be clear that your child's health comes FIRST. When your child is treated for cancer, they receive treatment which often lowers their ability to fight infection; they are immunosuppressed. When people come to visit, they need to know that if they even have a simple cold they could be putting your sick child at risk for serious illness or even death. If you are sick, you need to wear a mask and gloves as best practice to avoid contagion. Some other considerations are: limiting visiting time, not eating in front of your child if they have food restrictions, networking between the school and medical team to educate classmates and parents. One parent complained to the school because she thought the cancer our daughter had was contagious.
7. KNOW IT
Research, but then go all in. When your child is diagnosed, you'll find that many people give advice about treatment, supplements, diets, and programs. You have limited time to look at options, so do what research you can, then confidently move forward with the plan, especially in front of your child. If you have doubts and concerns, it is best to speak to the medical staff privately unless you are modelling for your child to advocate for themselves. I remember an 8 year old girl whose parents made her terrified of getting treatment. Because of their own issues and fears she would become catatonic anytime the medical staff even approached her and she had to be sedated for practically everything-not the best case scenario when battling for your life. Attitude is critical.
It is also important to note that ANY additions to medicines/treatment that you want to make should be discussed with your medical team BEFORE giving them to your child. Some supplements have contraindications to medicine and could actually be harmful. Well meaning friends were constantly making recommendations based on internet information. The same goes for food: depending on where they are in treatment, certain foods should be limited or not given. You should expect a list from the medical team. In our daughter's case for example, grapes were considered off limits at first, since the skin can hold bacteria or mold. All vegetables had to be cooked. Later, when immunosuppression was less of a concern, those restrictions were lifted.
8. BUILD A TEAM
Your team should at least have the following: social worker, medical team (nurse, technician, play therapist, doctors, specialists); with the lead doctor clearly appointed, parents, the child with cancer, and an advocate within their school (point of contact if they are school age). In addition, building a community of family and friends greatly helps with decreasing stress and making things more manageable. We had incredible support from family and friends...they would take shifts day and night at the hospital so we could spend whatever time we could squeeze out with our other children. Words can't express how grateful we are to this day.
Typically, the hospital will assign your child a social worker. They will help you get linked to available assistance and services, including but not limited to: the Leukemia & Lymphoma Society https://www.lls.org/ , Make A Wish https://wish.org/ , and your child's school system contact.
9. ADVOCATE
When a child is diagnosed with a serious illness, they can have actual physical problems that require special consideration or accommodations. You will need to be their advocate and communicate what those are, and help them graduate to speaking up about their needs themselves, not an easy task but incredibly necessary. DO NOT feel guilty or apologize for respectfully but firmly communicating what is required.
While in treatment for cancer, most children must miss a significant block of time in school. Many school systems have a "Homebound Education" program, where the student is officially enrolled in school but receives home lessons by a teacher who comes to you. Even if your child attends private school they are entitled to these services. To apply for this, contact your child's base public school to be assessed. You can expect to fill out multiple forms and provide a required letter from your child's oncologist. It does take time, so starting this process once your child is out of immediate danger is best.
10. FIND GRATITUDE
Most parents wonder if they did something wrong or didn't do something they should have to prevent their child's illness. Better nutrition? Should I have the basement checked for radon? Were they exposed to something? What could I have done differently? Move on quickly.
Throughout treatment, you will have incredible obstacles. Small fevers that land you in the hospital (that magical 100.5). Unexpected surgeries, low blood counts, long days getting treatment, and sometimes a bad reaction to medicine. My own daughter went into shock during her very last spinal tap. She had over 20. You may lose friends who aren't able to beat it and have to have that impossible conversation with your own child. There will be days that you find yourself on your knees, whether praying or just beaten down with some heart wrenching reality. You'll find yourself impatient, tired, and battle weary. But you always have a choice.
There is always something to be grateful for....even if it's just another minute with your child. There was Michelle's mom who knew her daughter had an aggressive osteosarcoma and things didn't look promising. I saw her break into a bright, wide smile one day when she said "Wow, she has one platelet." Or Andrew's mom, who came into the doctor's office after he passed away and was crying with happiness. His painting was featured on the annual calendar cover. We began to start the day with 3 things we were grateful for, and it helped create the right mindset, no matter what was to come.