Hearing and processing that my 23 month old William had Acute Myloid Leukemia was extremely difficult. Telling those who love us was even more so. Informing your loved ones that the sweet little one they love is seriously ill, that the family would be physically apart for 6 months of treatment and that the three year old would enter full time school to be cared is like punching them in the heart. Everyone was a bit shocked.
“What do you need?” “What can we do?” “How can we help?”
In some ways it is like watching a swimmer get caught and pulled under the current in the ocean. Fighting at full strength, they need help. A good lifeguard doesn’t just yell instructions or throw out a life ring. A good lifeguard runs and jumps into the water, no matter how cold, runs with high knees over the waves and supports the person in peril. It is hard to pull such a person, for they are often dead weight and struggling. In that state, they are in no position to ask specifically to get their arms in position, to help them breathe, etc. You may have to get in and do the basics FOR the person.
This September is my first Pediatric Cancer Awareness Month as a parent with firsthand knowledge. Upon request, I have revisited this year and realized how many lifeguards and life-lines helped keep me anchored in this storm called leukemia. If a loved one is battling cancer or if you want to be prepared, I’d like to humbly offer this perspective of what comprises magnificent lifeguards.
Specifically, what things SHOULD you say or do for a friend whose kid is battling cancer?
1.Thoughts and prayers. In the shock of diagnosis and early days, a person feels overwhelmed by people and isolated simultaneously. When we were literally on isolation precautions, I felt desperate for connection. During suffering, we often feel alone but in truth, hundreds of people have gone through similar events. It was very helpful to my extended family members when others shared support and prayers with them. Not only was their grandson hurting, but their children as well. Let your friend know they are NOT alone and that you are available to them in thoughts and prayers. 11pm texts came in nearly nightly from one friend who promised she was on her knees in prayer for us, storming Heaven’s gates. It gave me great, great hope. On dark days, I was appreciative when the mailman’s brother’s hairdresser fourth removed from the dog’s side prayed. It is like being surrounded by warriors on every side who are punching cancer in the throat. I didn’t just pray for health or peace. I prayed for understanding, that Jesus would be present, that God may be glorified and that we could spread the gospel. There needs to be purpose in suffering. Knowing people were praying that I could get sleep, that my older son would have peace at school and not feel angry or scared… those were the specific heart cries I needed met.
2. Be present and available as much as possible. If you can be at the home or hospital and it is helpful to the family, be there taking care of them. I know my friends who couldn’t get to me struggled, but they texted me constantly. I couldn’t answer right away, but I felt supported. One friend came and spent every Saturday and Tuesday with me for dinner at great sacrifice to herself. It reminded me of college and kept me sane. Laughter and chocolate go a long way. If you can’t be there, send boxes. I LOVED goody boxes that had healthy snacks, caffeine, lotion and little treats. It made my friends seem near.
3.If “there is nothing you can say… DON’T.” Listen. Be still. God DOES give us more than we can handle. Kids DO die–it may not be alright. Try not to say, “I don’t know how you do it.” Instead, things like “I knew you were strong, but now I can really see it more than ever. It is encouraging more people than you know” turns a simple compliment outward and reminds us that nothing is wasted. Even when we tell you we aren’t strong, don’t have it together and are falling apart, remind us what you see. It’s hard, I know.Tragedy happens. Sit, suffer and make a casserole. That is how you share our burdens. It makes us feel supported and loved.
4. Enter into their world. It is like entering a new country, learning a new language and adopting a new culture with fatal potential. Talking to friends and family that took time to learn the abbreviations, the meaning of blood counts and what the drugs did kept me connected and showed they cared.
5. Offer something specific. It is easier to say yes to something specific that to come up with what we need, especially when we need sleep or showers. Offering to bring a gift card or pizza on a specific night and then asking which time will usually get a yes. Look at what you can give or how you like to bless and offer. It is easier for all. If it is a dear friend, don’t ask. Just scrub the toilet. (Thanks, Mom in law. Potty training boys isn’t pretty.)
6. Keep offering. My friend Jen had to ask me about 1,345 times before I agreed to let her start a gofundme for us. Even afterward, she had to badger me to put up the link and ask. I was dreadful at asking for help. She also organized a meal train that was essential to our survival. She didn’t give up when I allowed my mommy-guilt to overcome my need for help. She used her strengths (my weak areas) and just did what needed to be done to meet our needs, even though it felt more uncomfortable than an atomic wedgie. I would NEVER ask for gas money, but a friend realized we paid $1,000 in gas and parking and soon gas cards and donations offset that need.
7. Encourage the REST of the family. Siblings are often on the back burner. Many people gave gifts to William, but the gifts I cherished came to Jonathan, who struggled mightily. Those who offered playdates, took him to Speech class, brought him cookie and sent him cards stood in the gap while I couldn’t be with him.
8. Take over the back burner. In this crisis mode, resources are thin. I moved the week after getting out of the hospital, so a dozen friends came to say goodbye and prepare the house. in 1 hour, the lawn was mowed, the kitchen was spotless, the curtains were down and the toys were packed because we did it together. The grandparents who drove Jonathan to school and friends who brought meals to my husband were as near to my heart as the nurses who changed our chemo bags.
9. Bring in the fun. This time will be memorable, so bring in good memories. I treasure the dance parties, laughs with nurses and other families, the Friday ‘girl days’, and rare visits. If you can make the friends laugh, bring favorite treats, and make the mundane into a party, do it. Don’t be afraid to ask how. When our kids have fun, we have fun.
10. Forgive them. If you are a friend blessed enough to receive the ‘vent’ or the complaining, you are most loved.We are being vulnerable with you, as well as total downers. That’s what you get for being trusted. We are also enormously sleep deprived, scared, processing and grieving. We need to lean on you as we learn to walk again, and that can be annoying. We may forget to ask about your daughter’s recital or to buy you an anniversary card, even though you mentioned it 15 times. Your understanding and patience during our worst will earn you our undying love and allegiance during our best. It is worth it.
There are many precious friends I have made because of this cancer-battle. The suffering is currently outweighed by the joy, although the grief and pain are still sharp. Thank you to the friends who realized I’d be going down the medical ‘road less traveled’ and said, “Road trip! I’m coming too- with snacks!” Life is better because of y’all.