Cancer is a scary word that no one likes to talk about yet everyone is affected by it. Pediatric cancer seems like one of the ones that no one EVER wants to talk about because it’s probably the saddest cancer of them all. A St. Jude commercial comes on and you immediately start to tear up at the smiling little bald-headed children and babies. Then the commercial goes off and you go about your day without another thought because surely your kids could never get cancer.
It’s really not that rare guys. One in 300ish (it’s actually like 285) kids will be diagnosed with cancer before they turn 18. That means you will probably know someone who’s kid has cancer. Facebook seems to be littered with news of kids with cancer these days.
So what do you do with cancer happens to someone you know?
How can you help?
Before we jump into ways that you can help I want to just lay out how things can and probably will change when a family has a child diagnosed with cancer.
Every pediatric cancer is treated differently. This means different types of hospital stays, different recovery times, different treatment options. There will be so many different time variables and most likely a parent may have to quit their job. Here are three personal examples of the level of time commitment it takes to bring a child through treatment.
Little E spent 17 days in the hospital when she was 1st diagnosed. Her regular treatment schedule was 4 days of chemo, then two or three weekly visits to the outpatient clinic for two weeks. We did this for 6 three-week cycles. Her chemo was done inpatient which means we stayed at the hospital for 4-5 days. If she ran any fevers outside of her regular hospital stays we were automatically admitted for at least 3 days. Clinic visits at minimum took 2 hours and some would take all day if she had to receive any type of transfusions. Her treatment took about 5 months which is so short in comparison to other protocols.
Our friend Cora, who was diagnosed at 4 months old was required to do her chemo AND recover in the hospital. So while Little E got to go home for two weeks Cora would have to stay at the hospital for usually about a month before she went home for a few days and then came back again.
Both us and Cora lived over an hour from the hospital.
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There were several families I knew who would drive up to 4 hours one way to come in for treatment.
Some children have protocols that require they receive treatment for 2 years!
It’s not like these kids can drive themselves to and from the hospital, to appointments or even care for themselves when they come home after treatment. There really is no other option for most families but to have one parent quit their job and become a full-time caregiver.
Insurance plans may cover most of treatment but these families will still have to meet a deductible. We had an awesome plan which had a very low deductible when Little E was going through treatment. Since then, plans have changed and if one of my children were to get sick now I would have to pay $13,700 per year in deductibles.
When you are living in a hospital or living out of your car running from doctors offices food becomes a problem. You can bring food to the hospital with you but in reality you end up getting delivery or hospital food which is CRAZY expensive.
Gas and parking are another HUGE expense. One of my pediatric cancer mom friends shared that they had spent over $1000 last year in parking fees alone because their hospital charged $12 a day for parking!! Its outrageous but what other option is there?
Now that I have given you a little background on the two biggest hurdles of what parents are going through lets talk about ways you can help.
Obviously this is something parents are most likely going to need. It cost us about $600 each time we had to stay at the hospital after gas, food for two adults for 4-5 days, and parking. People don’t often think about the hidden expenses like these.
Cash is always great! That way a parent can decide what the best use is for it.
Gas gift cards
Restaurant gift cards – just make sure you are getting something that is either close to their home or the hospital. Convenience is so important when you have a sick baby.
I mentioned earlier that lots of parents quit their jobs but sometimes that not something that they can do. Maybe mom has to keep working in order for the child to still have insurance. Or maybe if both parents aren’t working they wont be able to make their house payment. SO if both parents are working that child is going to be sitting in a hospital room by themselves while they get pumped full of drugs that make them sick.
IF you have a day off work or don’t work at all, go to the hospital and hang out with that child.
Take a long lunch and go to the hospital and give mom or dad a break for an hour to take a shower or to get out of the hospital and see the sunshine. LIttle E was only 9 months old when she started treatment. I never, ever left her hospital room. If her dad was at work and it was just me in the room I would have to page a nurse to come hang out with Little E just so I could go to the bathroom.
Educate your self
Parents learn way more medical information then they ever wanted to know when their child has cancer. There will be so many medical terms they have to learn. Learn the lingo with them. When you call or text to check up on them be informed about whats going on. Ifs infuriating to explain the same terms to the same people over and over.
Having a child with cancer is very lonely. You often feel like no one understands. For someone to ask how Little Es ANC or CBC looked on a particular day made me feel like that person truly cared. THat person was invested in this with me.
Let me paint you a picture here. Chemo makes you sick. Really, really sick. Kids don’t know how to throw up without making a mess, heck most adults can’t throw up without making a mess. Chemo makes you sick when you are awake and when you are sleeping. It makes you sick when you eat, or drink or smell something funny. It makes you sick for no reason at all.
The amount of laundry that has to be washed when you are sick all the time is outrageous. Who has time to wash clothes when they have a sick child to take care of?
Who has time to get outside once a week and mow the yard when they have been at the hospital for 10 days straight?
Who has time to properly clean their home when their baby just needs to be held?
Who can go to the grocery store and risk picking up germs when they are they only parent home and their child has zero immune system?
Normal, everyday things just become tasks that are impossible to do anymore. If you want to help, see what the parents need help with at home.
Check up on the parents.
Like I said before. Cancer is lonely. If you are going to check up on the parents or the kids, please be informed. Don’t just send a ” How is everything today?” text. Ask a real question about what’s going on. Engage with the process. Be involved. Ask about blood counts, ask about nausea, ask about whatever is currently going on with the child.
Being a caregiver is a selfless job. I would never have wanted Little E to be cared for by anyone but me but you do lose a sense of who you are when you care for another person every hour of every day.
One of the sweetest gestures was the day my best friend texted me that she had left a coffee on my doorstep because she knew Little Es counts were too low for us to go out of the house. Just a reminder that I still mattered to someone even when I couldn’t leave my house made me feel like a normal human again.
Another friend of mine knew that my husband and I had been really struggling through a particularly long hospital stay and she sent each of us a self-care gift. Getting home and having a sweet gift just for me was awesome.
Now if you’ve read my post on self-care you know I don’t really like the idea of it. I loathe calling it self-care and making it a mandatory part of a routine. I think taking care of yourself is important but I also think sometimes its okay to put yourself last. It’s okay to just embrace the season of sickness and put your head down and push through it. There will be lots of times when there’s just not enough energy left at the end of the day for the parent of a sick child to even consider doing anything for themselves. And that is okay.
I recently got to try out a subscription service called Caring Crate. This is one of those self-care boxes that I would have LOVED getting each month while Little E was sick. It would have made me feel special to receive a box of gifts just for me. It would have been a reminder that I too was important. It would have given me that little extra push to take 14 seconds to myself.
This is the kind of gift to send to a parent who has a chronically sick child. The Caring Crate is different each month and comes with 4-5 FULL SIZE high-quality products to make taking care of yourself a bit easier.
“Unlike other box subscription services, Caring Crate is focused entirely on your well-being. We skip the roundup of one-use products and instead provide you with the “tools” you need to care for your own well-being. Think of it as a gift to yourself, sans guilt.” –Caring-Crate
My box was beautifully packaged and full of goodness! The theme was Simple Summer Evenings and that’s exactly what vibe this box was giving off. All the products were hand-crafted with natural and health conscious ingredients. A cooling menthol foot scrub, a citronella candle, a charcoal and clay face mask bar and my favorite part, salted caramel sauce and chocolate sprinkles!
The wonderful thing about Caring Crate is how easy they have made it to gift a box! You can choose a one time, three-month, or six-month gift. Or if you are buying it for yourself you can choose the month to month option.
No matter what you choose to do to help your friends who are battling a pediatric cancer (or even an adult cancer) just do it with a giving and humble heart. Cancer is something that no one and no family should have to fight alone.