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In honor of Childhood Cancer Awareness Month I wanted to share some ideas on how to support families who have a child that has been diagnosed with cancer. Last year our niece, Paige, was diagnosed with Leukemia at her one year check-up. I have so much respect for the strength and resiliency cancer children and their families demonstrate after seeing, only from afar, the terrifying journey Paige, Jay and Brandi have been on this past year.
I asked Paige’s mom, Brandi, about her experience and here are some of the things she shared with me.
What would you tell someone whose child has recently been diagnosed with Cancer?
Personally being a cancer mom I would say: I’m sorry that you and your family are having to go through this. Let me know if you have any questions, feel free to call me or Facebook me. There are many resources out there for families, including a Facebook page called “Momcology: TCH/MDA moms.” This page is strictly for the moms and a few dads that are needing support from other families going through similar situations with their children having various cancers. And every child is different no matter if they have the exact same diagnosis or a completely different one. I would also let them know of the two organizations that help at the hospital every week, B.I.G. Love Cancer Care and Candlelighters.
What have you learned?
The saying “No One Fights Alone” is absolutely true. We have met so many other cancer families that are there for support and friendship throughout this lifetime journey. We kind of expected this journey to be over with once Paige’s treatment ended but we were completely wrong. This journey and the fear will never be gone. We just learn to live life through it and take the good with the bad. Paige will always be a cancer patient and nothing will ever change that no matter how hard we wish and pray for it to. Things will get easier the further out from her end of treatment date and her chances of survival increase with every year after that date. There is no guarantee for tomorrow.
I have learned the medical jargon, how to give a shot, how to turn an iv pump on and off, draw labs through a PICC line (A peripherally inserted central catheter (PICC or PIC line), a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition) and a PORT (A central venous catheter is a tube that goes into a vein in your chest and ends at your heart. Sometimes this type of catheter is attached to a device called a port that will be under your skin. The port and catheter are put in place in a minor surgery. The catheter helps carry nutrients and medicine into your body.)
What are some of the expenses and obstacles you’ve had to overcome in your journey so far?
The parking is the biggest thing because it gets expensive very quick, especially with how long we always have to stay in-patient. We generally stay at least a week every time we are in-patient because Paige is so little. Parking is $5 for 1 hour, $8 for 2 hours, $10 for 4 hours, and $12 for 24 hours.
Another is what insurance doesn’t cover. Before August 1, 2015 we had a primary insurance, United Health Care and Medicaid as a secondary. There were many times when it came to getting prescriptions for home that United Health Care (Our primary insurance) would not cover. Once your primary insurance says they will not cover something Medicaid will not pick it up. There have been several months when we were out $300-$500 for Paige’s prescriptions.
When Paige had her PICC Line we had to have altered clothing made as well as purchase PICC Line covers to keep her dressing clean. This is something no one ever thinks of, even those parents whose children have the PICC Line. When at the hospital they will not disconnect them from the IV except on days when they change the tubing. So dressing and bathing is extremely difficult with a PICC Line in the arm.
What are some of the worst things people can say or do (even though they might have good intentions)?
One of the worst things that I have personally had several people tell me is to be thankful that Paige has the better and higher cure rate of cancer. There is no “good” cancer and the cure rates are only based on the initial and harshest phase of treatment. The goal of the induction phase (the first initial treatment) is to completely get rid of all the cancer cells in the body. If that is achieved and the child is considered in “remission” then they go into the “cured” statistics. This does not mean the child is cured because the cancer can come back at any moment. They are still in treatment and most go through several other phases to try and keep it from coming back. And because all of the treatment is harsh on the children’s bodies it causes a lot of side effects. Including side effects later in life…One in particular that I’m of course not caring about now, but one day will is fertility. There is a very high chance that Paige will never be able to have children because of what the chemo has done to her body.
One of the rare times when we were able to go grocery shopping as a family a lady began talking to Paige. She knew she was a girl but looked at her and said where is all of your hair? Paige does not understand that her hair being gone is not normal it is just a part of her life now. Had she been older this would have more than likely upset her. Most girls and even boys are very self-conscious about not having their hair anymore. This leads to being bullied and made fun of at school because children and adults are not educated enough on childhood cancer.
Constantly asking the cancer family when they can come over to visit at someone else’s home. The fact is that the cancer family cannot control the environment of someone else’s home. Most cancer children are not allowed around animals and most people with pets allow them inside. It is very dangerous for anyone with a compromised immune system to be around any animal feces or urine. The cancer family cannot tell someone at your home to leave because they seem to be/sound sick. It is easier for them to have individuals at their home where the environment is conducive for them to be in.
Things you can do to help:
- Stop by to visit– which allows parents a chance to grab a bite to eat or shower when they are at the hospital by themselves and cannot leave their child alone.
- Offer to stay with the cancer child-If the family has several children it is very difficult on them. Staying with the cancer child and doing fun activities while the parents take the other children out to a movie or something is a blessing. It seems unfair for the cancer child to not go but most are very resilient and understand that they cannot go where lots of people will be. Having something fun for them to do at home while the others are away will be great for them.
- Gift cards/ cash– these help with purchasing food & paying for parking. It’s about $60 a day for two people to eat 3 meals at the regular cafeteria & parking is $12 for 24 hours (A typical stay just for a fever is at least 48 hours with a total cost for food and parking being $132 not including gas). Out-patient appointments also incur parking and food costs.
- Food– other than what is available at the hospital. Examples: Mexican Food, Seafood, BBQ, Pasta meals, Casseroles and anything home cooked is amazing. Also anything that is healthy-Vegetables and fruit….We eat so much fast food and snacks at the hospital and they are so unhealthy. Also, bring over dinner for the days that they are at the hospital all day for tests and chemo. Those days are extremely tiring and once we get home we usually nap leaving no time to prepare a good meal.
- Lawn/Pet Care-When Paige was first diagnosed it was a very scary time for us and neither of us would leave her side for very long. We were in the hospital for 46 days straight. Our neighbors were the absolute most helpful ever. They mowed our lawn, weed-eated for us and watered our dogs through the fence daily. Jay’s parents would stop by the house to feed the dogs and add more water once a week.
Brandi says asking for and accepting help can be hard. She suggests asking if a specific date is okay to stop by and if they like whatever dish you plan to bring. She also reminds that you shouldn’t expect to come around the family when you are ill and that includes allergies. Allergies are extremely misleading and can turn into an infection quickly. She suggests simply calling the family and letting them know you are ill and will schedule a time to come by as soon as you know you are completely well.
I’ve often heard that people are eager to help when something first occurs but the support tends to fade as time goes on. As Brandi mentions, a cancer family’s battle is a long never-ending journey. Nowadays you can stay in touch and follow their journey through social media like Facebook. You could also set reminders on your calendar to check-in with the family or to send or do something helpful.
I hope this post has helped raise awareness about Childhood Cancer and ways you can help support families of children fighting cancer. If you would like to help support Paige and her family you can visit her GoFundMe page to make a donation. You can follow her journey on Facebook at Prayers for Paige. I want to thank Brandi for sharing her insight and experience.