Defining Support, The Cancer Mom Series: Kellie

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 Kellie Andrew

Kellie is Mom to Brinn, who was diagnosed with stage 3 high risk neuroblastoma in December 2018.  Brinn is currently 2 years old and in treatment at Levine Children’s Hospital. 

There’s a lot going on in our family.  Happy and sad. Hard and then even harder. Our heads are just above water most days.  But we are finding a way to be okay.  I recently said that we live just one day at a time.  But that’s not true.  It’s really one moment at a time.  Sometimes the days are just too long and hard to think about.

The word ‘support’ for me personally is very broad. It means a card, a comment on social media, sharing a story online, a text, or phone call. Support means a meal, a gas card, a basket of items on my front porch, the offer to mow the yard or clean my home. It means a coffee mug, a soft blanket, an eye mask, and a new nail polish. It means a self-help book, being added to a prayer list, or coming to visit and just listen. Support means offering to watch the kids so we can go have dinner and have a moment to ourselves. 

I also feel extremely supported through the hospital and clinic. I feel heard and respected as her mother at all times. I feel that my thoughts are valued, which encourages me to be a part of each step in her treatment. 

Support means just knowing that someone else is thinking of us and making a point to let us know. 

I can only speak from my experience but without the things I mentioned above I feel that I’d really be struggling much more. I do feel I have a ‘job’ to keep everything together—physically and emotionally—for my family. That is pressure I put on myself. What’s the saying, ‘If momma ain’t happy, nobody’s happy?’ There is so much truth to that! I don’t want anyone to worry about me not being good. Getting a quick text or opening a card in the mail or having lunch arrive at the hospital from someone lifts my spirits. It makes me see just how good people can be, just because they want to be; restores my faith in others. In turn, I want to put that gratitude and happiness back into my family. 

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.

MAY CANCER MOM SERIES:

Defining Support, The Cancer Mom Series: Rae

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 Rae Copp

Rae is Mom to Sofia, who was diagnosed with High-Risk Acute Lymphoblastic Leukemia at 7 years old.  Sofia is currently cancer free.

“You never forget a person who came to you with a torch in the dark”.  M. Rose

I used to be a Stay at Home Mom, a Soccer Mom, a Class Mom.  Then my daughter was diagnosed with leukemia at the age of 7, and I suddenly became a Cancer Mom. I never imagined this would ever be my life.  Childhood cancer is something that only happened to “other people”, like those precious children in St. Jude commercials. I used to see them and their families on TV and wonder “How do they do it?”  On January 7, 2016 I learned firsthand how they did it.  With tons oflove, help and support.  Even before Sofia’s diagnosis came in, my family surrounded us in the hospital, letting us know we would face whatever happened together.

I have been so fortunate in so many ways because I do have such an incredible family, amazing friends, neighbors and even kind strangers who rallied around us.  Yet much of the time I still felt completely isolated, because at the end of the day, when everyone else went home, they were able to sleep in their own beds with the knowledge that their children, their loved ones were safe.  And I was lying in a tiny hospital bed next to my 7 year old daughter who was hooked up to countless IVs with toxic drugs, medications for side effects and beeping monitors knowing that she was anything but safe.  Within 24 hours of hearing the words that would forever alter our lives, I asked the hospital staff to connect me to someone else who had gone through this nightmare.  I wanted to talk to someone who understood what it felt like to have your entire world and everything you dreamed and hoped for crumble around you. It is heartbreaking and devastating on a level that no one who hasn’t heard the words “Your child has cancer” can truly fathom. I needed another mother who had been in my shoes to tell me that we would all be ok.  Unfortunately, HIPAA and other privacy laws make it quite difficult for a hospital to assist with this, so I’ve had to form my own pathways to connect with local families like mine.

Thankfully, support came to us in many ways.  Meal trains, gift cards, presents for the kids, home cleaning, visitors, fundraisers, friends taking Sam to school, soccer or having him over so he didn’t have to spend another long day at the hospital, neighbors taking care of our yard, and my very favorite – simple text messages, calls and emails from people just saying they were thinking about us, or asking how Sofia was doing, or remembering her schedule of appointments and wishing her good luck before her grueling treatments.  Our life was stuck in a repeating cycle of hospital stays, long days at clinic, horrible chemos, terrible side effects, blood draws, tests, vomit buckets, invasive procedures and endless fear.  So to get a kind word from someone who had taken a moment out of their normal day to day activities to let us know they hadn’t forgotten about us warmed my heart more than anything else. The worst thing you can ever do is give a cancer family “space”.  We already feel completely alone and disconnected from the comfortable reality we used to have, don’t ever assume we want to be ALONE with our misery.  Even if we don’t have the ability to respond, we still received the message that you care and it means the world to us.

Every form of support we received was essential to us making it through this train wreck that is pediatric cancer.  We needed each one and are forever grateful to every single person who was part of helping us during our darkest time.  While the reason is terrible, we are still lucky to have see the very best of humanity. The one thing that will have a lasting impact on me for the rest of my life is connecting with other cancer parents.  They “get it” in a way no one else can.  There is a unique strength and perspective that comes from facing your very worst fears and somehow surviving them. My fellow cancer parents inspire me, motivate me and understand me in ways no one else can.  We tell each other all the time that we HATE how and why we met, but we are better for knowing one another and traveling this road together.

After Sofia was diagnosed with pediatric cancer, Rae learned that there was no family support group or mentor family available at Levine Children’s Hospital or elsewhere in the Charlotte area. After connecting with a supportive online group called Momcology, Levine Children’s Hospital agreed to partner with Momcology to bring their peer-to-peer support group model here. Levine became just the second hospital in the country to offer it. Since the success of Levine Children’s Hospital Momcology, the program has spread to other children’s hospitals across the country.  

In addition to the Levine Children’s Hospital group, Rae started a Facebook group called Charlotte Pediatric Cancer Support Group so that ALL primary caregivers with a child with cancer could connect with one another regardless of where their child was treated. This enabled families affected by pediatric cancer to share information, opportunities, fundraisers and ideas with one another.

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.

MAY CANCER MOM SERIES:


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.

MAY CANCER MOM SERIES:


Defining Support, The Cancer Mom Series: Brandi

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 Brandi Jansen

Brandi is Mom to Wren, who was diagnosed with High-Risk Acute Lymphoblastic Leukemia in 2016 and completed treated at the end of 2018.

Support isn’t “tell me if I can do anything” … it’s “I’m doing this x”. 

Support isn’t being upset when I don’t meet some expectation. 

Support is understanding I’m just surviving some days. 

Support isn’t suggesting ways and trends and tricks someone’s sister’s next door neighbor read online that we should look into to best care for our child. 

Support is knowing no one wants to save our child more than we do, and we leave no stone unturned. 

Support is simply, JUST SHOW UP. Just, show up. 

Support is not being one more thing that I need to direct, manage or worry about. Just be. 

It’s ok to talk about cancer with me, really. It’s on my mind all the time… what I don’t want to talk about is how many people you’ve known who died from cancer or comparing adult cancers to my 3 year old’s cancer. Cancer sucks no matter the age, I get that, I’ve lost more than a handful of people in my family …  but watching your own child battle and not knowing the outcome is a special kind of devastating. 

Support is not asking super personal questions about whether I banked cord blood for any of my children “just in case” in the middle of the dairy section at Harris Teeter. 

Support is not suggesting or questioning if I breastfed, vaccinated, fed her organic, did chiropractic, kept her out of the sun or let her play in radioactive sewage. Pediatric cancer doesn’t have any risk factors… except maybe radioactive sewage, but I can assure you, none of us did that. 

Support is not commenting on a post about vaccinations that “immunicompromised children are a small population and if they are that sick, maybe they shouldn’t go out.” Would you ever say that to a mom with a kid going through chemo? 

I feel like this all sounds so negative when I say it out loud, but truly, this is what I want people to know. I am a positive person and we have smiled and cheered through some hard days, but this is what I’ve yelled in my head many times. 

We, as parents of kids with cancer, KNOW all of these things come from a good place. I don’t think anyone ever said or did or didn’t do something out of malice, but it does take buckets of grace sometimes to not be crushed or raged by off-handed, thoughtless comments. 

It got back to me once that someone minimized Wren’s cancer in such a way, like “oh, she’ll be fine, leukemia is treatable.” I’m still swirling from that. Like, how dare you?! Come hold her as she is put to sleep while looking at the apparatus that will literally screw her down to a table so that her brain can be fully irradiated to catch and sneaky cancer cells lurking that eluded the chemo we injected INTO HER SPINE … then talk to me about how “easily treatable” it is. Sorry, that was a trigger tangent. 

If you want to know what support looks like — look at the faces of the people in the pictures I post of long days in the hospital, fundraising runs, hikes, raffle basket nights at wine bars, blood drives, awareness events, pop-up shops, and all the celebrations in between. But also, its the often anonymous people who just did. They cooked, donated, gave blood, sent care packages, prayed, shared our story or dropped off whatever, whenever, never needing or expecting a thank you.

Show up. BE ALL IN. Be like those people.

I feel incredibly supported. I am forever and always blessed by those still standing by our side, always waiting to do more for us, for our cause, and still just showing up. I learned a lot from cancer. 

I can’t even begin to go into the importance of feeling supported by the medical staff that treated Wren. They were always listening to my mom gut and never questioning my feelings or observations or worries. To tell what they have meant to me in all of this, I’m not sure could be written down. 

But in our life outside of the hospital/clinic, the importance of being supported was always to not feel alone in the war. Without the support I received, I don’t know how I would have done it. I don’t know how my family would have made it as intact and as well adjusted/coping as they are. 

Cancer didn’t just happen to our daughter. It happened to all of us that love her. To the people who showed up, you are everything. And you will always have me on your side. Always. For whatever war you may go though. 

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.

MAY CANCER MOM SERIES:

Defining Support, The Cancer Mom Series: Melissa

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 Melissa Scanlon

Melissa is Mom to Gemma, who was diagnosed with Wilms Tumor on her 3rd birthday in 2017. Today, Gemma currently is in remission.

Support as a cancer mom often comes from unexpected people – the charitable volunteers that bring gifts to the hospital, the owner of Planet 21 salons that hears our story and offers to give us both cute pixie cuts to prep for chemo, the dry cleaning lady that texts you for years (even when she changes jobs!) just to tell you she is praying for your family, and our girl nurse Lauren at the clinic who was an absolute angel and took care of me as much as Gemma!

If it takes a village to raise a child it takes a universe to raise a child with cancer. Our daycare (Ballancrest Academy) rallied a huge team to do the ISF 5K in Gemma’s honor. Those teachers and families cried with me and cheered for me the whole way and we could not have survived without them. They still celebrate Gemma coming back to life with us. We will all be sobbing at her “graduation” this summer as she starts kindergarten in the fall. They have cemented roles as our extended family because of their never ending support. 

All cancer moms will tell you we are part of the club no one wants to join. You are all at once the one that holds them down to access their ports and the one that dries their tears after. It is sickening to watch your beautiful child get chemo or sedate them every day for radiation. And even though you are heartbroken you have to be strong because you are the #1 cheerleader. That is why all the family, friends and community support is so vital. Some days you just need a hug! Also you are basically living at the clinic – thankfully we have the wonderful people at Levine and do not have to go far – but someone has to cut back at work in order to stay on the treatment plan which adds a financial strain to an already stressful situation. It is so important that families have resources to alleviate that burden.

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.

MAY CANCER MOM SERIES: