You know someone that has a child with cancer. You feel helpless, but want to help. You want to know the details, but don’t want to ask. You think of the family constantly, but don’t want to bother them.
I was blessed with the comfort of some very creative friends and family while my son Joseph battled Neuroblastoma from 2001-2005.
Throughout the 3.5 year journey, I have very fond memories of the simple things, as well as the more elaborate things that people did for my son and my family.
Gifts of Time (Our favorites!)
My niece, Kathryn took some time off from work and surprised us with a visit in New York where Joseph had treatment at Memorial Sloan-Kettering. She experienced staying at the Ronald McDonald House, met Joseph’s medical team, watched him have fun, and watched him go through horrific, painful treatments. Although I did not want her to witness what these kids go through it was comforting to know that she was willing to look beyond that and be there for Joseph and for me.
Staying at the Ronald McDonald House meant we were living in New York City on and off for six months. Vin, Joseph’s father, would visit almost every weekend with my two other sons; pulling him away from work and the boys away from school. A few times, a couple of friends offered to drive Joseph and I home from NY after treatments, one of the most incredibly thoughtful and giving gifts. This allowed for one less time we had to pull the boys from school and Vin from work.
Friends and family took my sons Michael and Stephen to dinner, museums, swimming, or let them hang out at their houses after school. I missed them so much, but it was comforting to know that they were well taken care of and busy.
Neighborhood kids mailed Joseph cards, candy, gum, and crafts while we were traveling for treatment. It helped us feel connected to home.
Joseph’s preschool classmates took time to make him cards and mail them. We hung every one of them in his room.
“All you really have to do is listen and become aware of the cancer patients’ surroundings, and you can come up with something that they may need, however simple.”
When you have a little one in the hospital hooked up to IV lines and heart monitors, you have to keep a pretty close eye to make sure things stay in tact. This means you can’t leave to get food, take a shower, or go for a walk for some fresh air. One morning, I woke to “Uncle Joey” with a nice cup of coffee, stating he would stay so I could take a long, hot shower while he entertained Joseph. Best shower ever! That was years ago and I still remember how refreshed I felt, and that he put thought into my desperate need for a good cup of coffee and a much needed shower. And Joseph was so excited to play with his Uncle. It was simple. It was meaningful.
All you really have to do is listen and become aware of the cancer patient’s surroundings, and you can come up with something that they may need, however simple. Uncle Joe probably heard me say, “I can’t leave the room to go get coffee.” Listen to the parents and follow up on those simple things. For the more elaborate things, you don’t necessarily have to try to do it alone to be the hero. When my friends got together, they became an army of ideas and creativity.
Just make sure you are not sick when you visit and don’t bring strong smelling food if the patient is nauseous.
When you hear mom or dad mention a chemo date or surgery, put it in your calendar so you can give them a call to see how things went. Days and weeks go by very slow in the hospital and kids sometimes feel forgotten. On Planet Cancer, it is a constant struggle to stay positive and entertained.
My friend Ellen offered to watch my twin boys after school. She wanted to make sure she knew how to answer their questions if they were to ask about their little brother’s cancer. So, she got a book about Neuroblastoma. From then on, she knew. She knew what we were dealing with. She knew the monster and the things we had to do to fight it.
I had a back injury during one of Joseph’s ten day outpatient treatments. This injury was the best thing that happened to my relationship with my friends. They came up with a rotating schedule to drive us into the oncology clinic so that my husband could work and be home for our other boys. They spent the day with us in clinic and became fully engaged in his treatments, witnessed his day to day routine, learned some cancer lingo, and learned some of our needs. I then could later speak to them about treatment and they understood. They could also make conversation with Joseph about his clinic friends.
Joseph loved taking his pre-school teachers for a tour of the hospital. They too became more familiar with his life outside of school and why he had to take so many precautions.
The only way to truly educate yourself is to be there and see it, even if it’s only one visit. Yes, some of it is tough to watch, but the parents and siblings have no choice. It’s ok to cry with them. Just don’t make it about you. It’s about the patient. I was sad, but honored when I saw tears. They loved my son too.
What can I do?
My friend called and asked if she could come visit. I said, “Today is a good day. We’d love the company!” She replied with, “I’m stopping at a bagel shop on the way. They have really good chicken sandwiches. Would you like one?” Hell yah! Hospital food gets boring fast. Then she asked, “What does Joseph feel like eating today?” I was so glad she didn’t say, “Do you need anything?” That question can be overwhelming to a parent in crisis. Be specific about how you can help.
“A lot of people say, “Let me know if you need anything.” What I needed was cancer to leave my child and my needs were on the back burner.”
My friend Sue, also a nurse, offered to come with us to the hospital during initial diagnosis. I knew my husband Vin and I would not be in our right mind to absorb all the details. She was not only there for support but took notes and helped us understand some of the medical terms and tests he would have. She also took charge of communicating updates to friends. That saved us from repeating details over and over.
A lot of people say, “Let me know if you need anything.” What I needed was cancer to leave my child and my needs were on the back burner. So, I suggest to you to come right out and offer the things you can do for them.
- Can I come do your laundry?
- Can I come mow the lawn, plow the driveway?
- Can I come visit you and bring you a nice fluffy pillow?
- I’m going food shopping. Can I get your family some milk, soup?
- If you are a finance professional – Can I help you figure out insurance, bills, etc?
- Can I update friends and family for you?
- Do you need me to pick up your other kids or drive them to sports practice?
It was fall. The leaves were piling up in the yard but our priorities were taking care of the boys. Every second we had together as a complete family was gold. My friends and neighbors took note of all the leaves. Eight families chipped in and bought a huge leaf blower, showed up with tarps and rakes, and set up a table with coffee and snacks. I was speechless. Joseph could hardly wait to get his shoes on and join in on the fun. Yes, I said fun! Who’d think raking would be fun? (The neighbors still rotate taking turns with the leaf blower, years later).
The Financial Burden
Many people think when you have insurance that all is covered. Most is, but there are several trips to the ER for most cancer kids. Each co-pay was $200 for us, at the time. And you hope that your child doesn’t need a blood transfusion on a weekend… cha ching!
Travel was expensive, which we did many times to Boston, and New York and some trips to Rhode Island and Philadelphia. Travel also included paying for meals, hotels, parking, and entertainment for long days in a hospital room.
My friend, Kathleen, showed up at my door with an envelope full of cash. She said, “I don’t want you to use this for medical bills or gas money. This is fun money! I want you guys to have some memorable fun!” And that’s what we did with it.
Co-workers from my previous employer all pitched in some cash and gave me a card signed by all.
My neighbors snuck into my house while we were in New York and we arrived home to a basket full of gifts and gift cards (gift cards to the pharmacy went quickly).
We never wanted a fundraiser, although it would have helped, but it was too hard to even think about money. All we thought about was doing our best, with the knowledge we had, to save our son from pain and suffering. I have to say, it was very much appreciated when people gave us financial help.
“Although I couldn’t brag about him scoring a goal or getting a home run, he worked just as hard as any other kid trying to score good health.”
Ask the question
You will know if the parent doesn’t want to talk. Try again another time. I never opened up to people unless they asked. I didn’t want other people to feel sorry for us. I’d like to think I am a very positive person and I never wanted to be the “doom and gloom” in the room. But when that person asked me, “So, how was he diagnosed?” and “what is chemo like?” I could talk for hours.
I love talking about my son like any mom does. I was proud of him for all he endured. Although I couldn’t brag about him scoring a goal or getting a home run, he worked just as hard as any other kid trying to score good health.
Instead of saying, “How’s Joseph?” Maybe you could ask something more specific. “How did Joseph do after surgery?” or “How is Joseph’s appetite?”
Think before you say, “I don’t know how you do it?” Try saying, “You are doing a great job taking care of him/her!”
I love talking about Joseph. He was a very funny kid with a magnetic personality. Yes, childhood cancer is heartbreaking, but don’t define these families as just the “cancer family.” They don’t have a choice but to be there.
To the world you may be one person, but to one person, you may be the world.