Posts

Defining Support, The Cancer Mom Series: Melanie

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

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

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

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

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

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:

Defining Support, The Cancer Mom Series: Eileen

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

By Eileen Kellgren

Eileen is Mom to Sydney, who is currently 14 years old, finished treatment for Hodgkin’s Lymphoma, and recently ‘Rang the Bell’ in December 2018. 

Support is lack of expectation.  It’s showing up whether you think you’re needed or not or whether you know what to do or not.

This ugly beast swallows children, siblings, families – all in the painful way only another cancer mom can understand so we don’t expect you to know what to do – heck – we don’t even know what to do ourselves!  One day we are living our lives and the next we are facing the unthinkable … #surreal.

It’s not the flu, it’s not ok, it doesn’t feel comfortable to walk this journey, to see your child suffer week after week, appointment after appointment, scared, lost, sometimes losing hope.  And all you feel is FEAR at every turn. Life. Threatening. Fear.

So many lose so much and if you’re lucky to be left alive and in tact after all is said and done then the fight to comeback is just the beginning.  

So when others show up, and don’t hide because they may not know what to do, it makes all the difference.  When a cancer mom doesn’t feel alone it’s the best gift of all 💗.

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: Nicole

Defining Support, The Cancer Warrior Mom Series is a collection of thoughts from many incredible Cancer Moms and how they define support. 

By Nicole Yudin

Nicole is Mom to Zach, who is battling Leukemia for a second time.

Nicole & Zach

Support comes in many different forms, I think.  There’s financial support where family, friends and even organizations provide monies for travel expenses, medical expenses, grocery expenses, etc.  Basically, financial support to me is what helps us to keep the bills paid and food on the table.  Then I think of support in the form of gifts.  These are mostly material things that are given to our family, mostly to Zach, to say “we love you” or “we’re fighting with you”.  We take these things to the hospital to help pass the time.  Zach is a BIG time Lego fan and he has spent lots of time at the hospital building Legos.  People are very good at gift giving, and while the support is truly thoughtful, and I am grateful for it, there definitely comes a point when you just have too much stuff.  People have the best of intentions in giving gifts but you definitely become inundated with things that you just don’t need or your child is not interested in.  But, I think gift giving makes people feel good and it’s easy for them to do. 

Finally, and the most important to me personally, is emotional support.  I need this more than any other form of support.  It seems so easy to give emotionally in my own mind, yet it seems to be so difficult for people to do.  Well, it’s not difficult for other Cancer Moms.  They get it.  I honestly get the most out of someone taking 10 seconds of their day to send me a “Thinking of you” text or other personal message.  That’s it.  That’s all I need.  And, now going through cancer twice with my son, unfortunately, those messages have become fewer and farther between.  Most often, and this is to be expected, it’s my other Cancer Mom friends who send me those messages.  Again, they get it.  I have a facebook page that I write on almost daily about Zach and what’s going on, and I have so many people who are reading it and making comments.  This truly is support.  But, it’s that friend who sends me the personal message that makes me feel the most supported.  Does that make sense?  It’s wonderful to have all of these people cheering for Zach, praying for Zach, sending all their good vibes for Zach and they do this by reading my FB page.  But, selfishly, I write that page for myself.  To express how I feel, to share the raw reality of childhood cancer.  I’m glad people read it.  At least, if nothing else, it’s creating awareness of childhood cancer and maybe it will spawn people into action.  But, like I said, send me that text message or other personal message, that’s what helps me the most. 

It is important to support Cancer Moms simply because we are living a life that we never thought we’d have to live.  We have endured so much, but more importantly, we have watched our children go through so much and that is beyond-words painful.  People may not know what it’s like to live in our world but they need to be present.  They need to make the effort to reach out to me and not the other way around with “let me know if you need anything.

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: