10 Things a Family Dealing With Childhood Cancer Really Needs

12

*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.

A family friend made us this card holder so we could see all the notes we were given!
A family friend made us this card holder so we could easily see all the notes we were given!

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.

GiftCards
Just a few of the many, many gift cards we were given. We didn’t have to think about meals for a long time!

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.

Jace-Sock9. Talk to Your Child About What Might Happen with Their Friend

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.

12 COMMENTS

  1. Hi Erin, thanks for sharing. A neighbor that we do not know much at all has a child that just finished their active chemo phase and is now in the maintenance phase. We just now found out about their family’s situation. I feel bad that I didn’t reach out to them sooner when their situation was more intense. I would like to help out/reach out in some way now though. Would you happen to have any suggestions? Thanks!

    • Hi! First, you are an amazing neighbor as to want to help! We are currently in maintenance mode and we just enjoy being normal. One thing I think that always brings people together is food. Make a few extra meals for their freezer or have them over for dinner so you can get to know them better. Bring the child a new hat (my son’s hair is taking forever to grow back) or a new t-shirt if you happen to know the size. One friend sent us a Little Warrior t-shirt and I love it so much because it’s so true. If nothing else, consistently asking them how things are going is great. They probably want to share how well he is doing or the latest progress. Hopefully some of these suggestions help!

  2. I love this, and it is so true for any family with children. Even if it’s not cancer or even if the parent has cancer. It’s the small things that no one thinks about. Cleaning was always my biggest one. Not only was I not home to do it but even when we did get to come home I wanted and needed to spend time with my child who was still sick, but was able to come home for a little bit, and did not want to spend my time cleaning. You are so overwhelmed anyway and then to come home and look around and see the 100 things that need to be done…. Thank you for this!

  3. perfect! when my son was in treatment, we just couldn’t keep up with the yard. I called our church, and the Youth Ministry kids took it over and came every other week or so! it was awesome

    Meals are great – but I like to remind people to put them in single serve microwave safe containers that do not have to be returned. We got a few things that were HUGE and we just couldn’t eat, so they went to waste

    • Nancy, I didn’t even think about the yard! Excellent point. My son was in treatment from January to March, so the yard was still in “winter”, so I didn’t even think about it. Glad you pointed that out.

  4. My heart skipped a beat at your first line. Our little guy was diagnosed with Burkitt’s shortly after his fourth birthday in 2013. Brutal. Thanks for this blog. These are great tips for non cancer friends/family. Glad to hear your little guy is in remission!

  5. Great article!! My son also had Burkitts Lymphoma twice in 2014. He relapsed 4 months after completing chemotherapy the first time. So many people from church helped us in these ways!!

  6. I am a cancer grandma so I can say that all these are true. On the restaurants though, perhaps pick ones that have a drive-thru because a lot of times the kid’s immune systems are low so they cannot go put in public without a mask. Masks are only effective for a very short period of time.

LEAVE A REPLY

Please enter your comment!
Please enter your name here