*Originally published May, 2016.
A few months ago, my 4-year-old son was diagnosed with Burkitt’s Lymphoma. It was very unexpected as he has been really healthy in his short life. We were displaced for days at a time, juggling life between the hospital, home, and work. We put all of our short and long-term plans on hold as we cleared our schedule to be with him at the hospital, and had a new way of life for a few months.
Thankfully, today I can shout from the roof-tops that he is in remission, but it wasn’t an easy road to get there. He went through major abdominal surgery, two rounds of chemo, a lot of emotional trauma, and is still struggling with certain moments of getting back into “regular life.” We have had to take yucky medicine, flush his PICC line daily, do lots of needle pokes, met strangers who eventually became friends, and more.
There really wasn’t anything easy about his journey, and it breaks my heart to think of all he endured to get better. He is my little warrior, an example that life isn’t always easy, but we try to get through it the best we can. However, going through this journey with my little man, I learned some things that I really appreciated from people in my life. These were simple acts of kindness that people blessed my family with to get us through those exhausting days.
10 Things a Family Dealing With Childhood Cancer Really Needs
1. A Clean House
We wore the road down between our house and the Children’s hospital. I didn’t have the time or energy to worry about housekeeping or putting out the trash. When he was diagnosed, we left in such a hurry to get to the hospital that we left it in a disarray. And you know what? I had little cleaning fairies (aka my friends) come over, tidy the house up, put out a vase of fresh flowers, set out an air freshener, wipe down my countertops, and vacuumed my carpets. And that immediately took the stress out of house chores.
2. Cards and Letters
We were flooded with mail and it made us realize that we are not alone in this journey. We got letters from people we’ve never even met – who had heard my son’s story through a friend or from the prayer request list at church. It amazed us and strengthened us to know we had so many people thinking of us.
3. Disposable Items
Paper plates, plastic cups and napkins to toilet paper and paper towels. This goes back to #1, but we really didn’t have the energy to do the dishes since our days were full of caring for our son and coming back to the house late at night to take care of our daughter. We had friends bring us food for weeks, but one of the most helpful things to get was a package of paper plates. Dishes are instantly done and I didn’t have to go to the store.
4. Visa Gift Cards, Rolls of Quarters, and Restaurant Gift Cards
When you are in the hospital, you are at the mercy of their cafeteria or specialty restaurants. Those can add up for sure and a little extra cash or Visa gift card is wonderful. A friend of ours brought us a roll of quarters and that gave us an excuse to take a field trip to all the vending machines we could find and make some fun, special purchases. This was when he got his appetite back and snacks sounded good to him again.
5. Healthy Snacks
Comfort foods are where it’s at to get you through those emotional moments, but day after day of eating carbs and candy wreaked havoc on my already stressed out body. I loved getting healthy bagged snacks, yogurts, fruits & peanut butter, bottled water, protein bars, and trail mix to fill in.
6. A Call or Text When You’re Running Errands
We had lots of friends who said, “Let me know how I can help.” Well, I’ll try to, but I don’t want to add an errand for you OR my mind is focused on my son and not thinking of the grocery list. I loved when a friend was at the store and she called to say, “I’m at Target. What can I pick up for you?” This way I knew she wasn’t making an extra trip for me and I could give her those two things we were running out of (shampoo and milk.)
7. Don’t Forget About Siblings
My daughter loves her brother very, very much. But it hurt her feelings that so many people were bringing things for Brother and not for her. It wasn’t easy for her young six-year-old mind to register why all this was happening, so it brightened her day to receive something too.
8. Keep the Gifts Small
We loved all the presents people brought our son, and are SO thankful for the thoughtfulness of so many. But we had buckets and bags and lots of extra piles of gifts to bring home from the hospital. Space is limited in those rooms and while we appreciated it, it’s best to keep it small. My son loved simply getting pictures or hand-drawn cards to put up in his hospital room.
My son lost a lot of weight, had a PICC line out of his arm (but had a cool sock to cover it), lost his hair, had no energy, needed to ride in a wheelchair at the hospital, had an IV connected to him, and more. If you plan to visit, tell your child what’s going on with their friend and what they might see. It’s okay to ask questions, but remind them not to laugh at their bald head or new things on their body. And keep that conversation going for the future visits. My son is still gaining back his strength, but his friends forget that he isn’t back up to speed yet. Remind them to slow down for their friend.
10. Don’t disappear
Life came crashing down and we needed the support and strength from others to get through day after day. It’s beyond tough and exhausting. People don’t know what to say. And that’s okay – send them a daily encouraging text, follow their Facebook status updates and give an encouraging word, go up to the hospital/to their house to visit, simply be present. I had a friend drive down from Wichita to spend a few hours with me and my son in the hospital. I can not even put into words what that meant to me. She was there. And I needed that.
All in all, each family is different. These are my suggestions for what really helped and benefited our family when our child was unexpectedly diagnosed with cancer. But I really urge you, if you do nothing else, to remember #10. Be there for your friend. They have been thrown on an emotional roller coaster and their only focus is their child and doing whatever it takes to get them well. Life is too short and can change in an instant. They will need your strength and support more than ever. Be present, be ready to help, be ready to support them in one of the worst experiences of their life.