Defining Support, The Cancer Mom Series: Melanie

In one split second, their world changed forever.   A scary and isolating job that no woman could ever prepare for.  Regardless of the type of cancer, the experience is long and difficult. Regardless of remissions, cures or unimaginable loss, cancer is part of their lives forever.  Their moments in life are now marked by haunting memories and inconceivable feelings.  Their family’s timeline is now marked by ‘before’ or ‘after cancer’. We are working during the month of May in honor of Cancer Moms everywhere, fighting for their kids. We will share stories of many incredible Cancer Moms this month and how they define support.  We want to be their voices, reminding you all that the ONLY way we can make things better for kids fighting cancer is to do something about it. We hope we all find ways to lighten the load for our friends, neighbors and family members struggling quietly, valiantly, every single day, to keep their children alive. Donate today in honor of a mom. Donate in honor of a child. Your donation to ISF helps fund pediatric cancer research in our local community.

By Melanie Miller

Melanie is Mom to Emily, who was diagnosed with stage 4 neuroblastoma just after her 4th birthday.  Emily is currently 10 years old and no evidence of disease.

I know I speak for a lot of other “Cancer Moms,” when I say it has been the greatest challenge of my life to be a caregiver for a child with cancer, and the first thing that you sacrifice is your own self-care.  It gets thrown out the window almost immediately.  Every ounce of energy was put into taking care of Emily when she was going through treatment.  I barely had anything left for my younger daughter, let alone my husband and least of all myself.  When I think of the word support, I think of someone who is there to hold me up when I am falling, giving me breath when I am drowning. My parents and sister were my rocks.  They spent countless hours in the hospital with Emily, so I could take a break, run home for a shower, to play with Sadie, to take a nap, a walk, anything.  They were my shoulders to cry on, to scream in anger and frustration, to laugh with, and to lean on when I was physically and mentally exhausted.  They would sit with me in silence because they instinctively knew that was all I needed. They would force me out of the house to go see a movie, take a swim in the pool or wander aimlessly around the mall.  Without them I would have suffered enormously.

Support also comes from friends and neighbors.  For me the most important role they played was in for caring for my younger daughter, Sadie.  Support came from friends who would pickup and drop-off my younger daughter to/from preschool, who would take her after school to their homes for hours and feed her dinner. Friends who helped so much that they became friends with my parents as well.  Jackie, Heidi, Karen, Tara, Teeny, and other moms who took Sadie in like she was one of their own, a surrogate parent when I couldn’t be there.

The best thing a friend could do was just being there without asking, someone pushing in when you retreat into yourself, someone showing up out of the blue and someone forcing you to take care of yourself as a caregiver. I am terrible for asking for help from anyone apart from my immediate family, and I tended to isolate myself when Emily was sick.  If friends offered to visit I would usually turn them down or delay the visits.  The best thing someone could do was almost not give me an option, such as “I am swinging by the hospital to sit with you today and bring lunch, what time works for you?”  If they didn’t really give me an option to say no, then I usually accepted and was always thankful for the visit.  When your child is sick and you are stuck in the hospital for what seems like an endless amount of time, you don’t want to have to make any decisions for yourself, so when friends would just show up with coffee, treats, a meal or just a balloon for Emily, it was always appreciated.  

“Let me know if you need anything,” can be the least helpful thing, however well intentioned, that someone can offer. We know they mean well, but very few people will react to that with “YES, I need XY&Z.”  Instead, if someone wants to help they should just ACT.  Show up at the home and mow the family’s lawn, drop off a meal (or setup a meal train), pick up groceries, set a date to pickup the siblings for a playdate or activity on the weekend, pick a day to come sit with the sick child in the hospital so the parents can go out and have a meal together, even if just in the cafeteria, things like that. My advice to friends and family of a family who is going through treatment, simple, just show up!

Some of the most memorable offers of support were often the simplest, a friend offering to sit with Emily in the hospital so I could go take a walk outside or better yet go home and take a shower.  My #1 memory, with a bullet, is one of someone who offered help and wouldn’t take no for an answer. It was in December 2012, when Emily’s special needs teacher from the year before, Ericka, insisted that she come sit with Emily for 6 hours on Christmas morning so we could be home with Sadie to open presents.  Ericka had 2 young children at the time, and what she offered was a huge sacrifice that we did not want to accept.  Emily was in isolation for her stem cell transplant, and we had been there for over 3 weeks by the time Christmas rolled around.  Ericka put her foot down and said, “I am showing up at 10 am on Christmas morning, so you better go.”  It was such a gift, I will never be able to adequately thank her.

Donate in honor of these incredible women, your donation to the Isabella Santos Foundation helps fund research so desperately needed for rare pediatric cancer patients.

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