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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:

May Executive Director Dish: Once a Cancer Mom, Always a Cancer Mom

“They pretend to be strong, but they cry a river of tears daily. They wish they could take the pain away from their baby and suffer in their place! They watch helplessly as disease and poisons ravage their child’s body. They hold their child’s hand as they vomit…for the 5th time this morning (its a better day!). They spend more time in the hospital (which is 3 hrs away from home ) than at home and are on a first name basis with 90% of the staff. They sign consents for their child to be poked and cut in search of the cure. They collect hair from their little one’s pillow and place it in a bag..for the 3rd time. They miss their old friends who long ago stopped calling (because they didn’t know what to say) but find comfort from their new friends who all have kids going through the same nightmare. They see the pitty in others eyes when they look at their child… The look that says, “I’m sorry, but I’m so glad it’s not me”. They hear EVERYDAY how strong they are, and how other people could not handle what they live through, but the truth is, they don’t have a choice (and they don’t feel strong at all). They have been told horrible things, by well-meaning people, who criticize them for things they could never understand. They watch their child’s friends die and know the reality that it COULD happen to them. They have been to 6 funerals this year, all children. They feel guilt when their child is doing well because so many of their friends are not. They look forward, yet dread the day the poison stops, knowing this is what is fighting the monster. They live with the fear that it could happen again, every minute of every day! They wish their child could go back to school, but not because they are ready for a break, but because ALL kids deserve to be kids! They watch as their child cried because other children (and adults) say hurtful things. They wear gloves while handling the poison that they feed to their child every night. They have to tell their child “no” when they want to play sports, play outside, go to school, go swimming or go to a friends house because their immune system is too weak and an infection could take their life. They allow doctors and nurses to do horrible things to their baby in search of a cure. They search for the reason “WHY” so that they can make some sense of this nightmare, and none is to be found. They miss their other children as they grow up without them (and the siblings are not allowed to stay at the hospital)…missing all the milestones and special occasions, while fighting for their sick child’s life….wishing they could tuck them in bed at night, but they haven’t been home in weeks or months. They don’t remember the last time they slept more than 2 hrs straight. All of this and more…all while bringing awareness and raising funds so YOUR child will never face this hell! THEY ARE THE PARENTS OF A CHILD FIGHTING CANCER! They need your help!”

UNKOWN CANCER MOM
Erin & Isabella, 2008

I remember reading this passage a Cancer Mom wrote when I was going through Isabella’s fight against cancer.  I posted it on my Facebook page and so many people thought I had written this so beautifully.  I’m sure it was because I was writing the truth every day about what our life was like and this sounds just like the hell I was living.  Truth is, it’s the life every cancer mom lives.  I have to say that I struggle daily with her being gone, but the one thing I don’t miss is the actual life of a cancer mom.  It’s the scariest life you will ever lead. I flash back to it quickly when I sit and talk with a Mom who has a child fighting.  The look in her eye is tired but thankful… it keeps me going at my job for sure.  

Often times as a Cancer Mom you just feel helpless.  You are shuffling between hospitals and medicines and your other kids and bills and a marriage, the thought of having time to do anything that brings awareness or funding to your child’s disease feels impossible.  It never failed… Isabella would always relapse right before an event.  And like every year, our supporters would rally around us and put on an amazing day and do all the things I couldn’t.  They allowed me to just be her Mom and focus on keeping her alive.  I was so thankful to all the people that were doing things to help her and kids like Isabella when I couldn’t.  

This is what ISF does today.  We are the feet on the street for the families that MUST remain focused.  They can’t scream from the rooftops about survivor rates and funding cures and bringing in the best doctors because each day they are just living in the moment… because that is the only way to survive.

So with May upon us, it brings our focus to these Cancer Moms as we approach Mother’s Day.  I can’t tell you how many Mother’s Day posts I wrote about treasuring every moment of the day.  Opening that Mother’s Day card from Isabella and the kids, hoping it wasn’t my last from her.  (I still have them all.)  We would go to breakfast and the kids would take turns sitting on my lap as I quietly said prayers that I would always have 3 children for Mother’s Day.  Unfortunately, for me and so many other Moms… Mother’s Day is spent putting on a brave face for our other kids – knowing the day will never be the same.

Erin & Isabella, 2005

ISF is putting a TON of energy into our May events.  We want to tell you the stories of these incredible Moms and we want to do all the things this month they wish they had the time to do.  We want to be their voices, reminding you all that the ONLY way we can make things better for their kids is to do something about it.  So we are going to ask you to come to our May events.  We are going to ask you to donate on behalf of these Moms this month.  Donate as it were YOUR child or someone you knew.  Set up to donate every month because you know it’s the right thing to do.  Show these Moms that we support them and we are behind them and promise we are going to do everything we can to bring the doctors and treatments to their kids so they can focus on what they need to do right now.  We are here behind them and this month, we need you to be too.  

-Isabella’s Mommy (Once a Cancer Mom, always a Cancer Mom)

**We are working during the month of May in honor of Cancer Moms everywhere, fighting for their kids. We want to show that ‘Cancer Messed With the Wrong Mom’ and we have their back while they do what they do best. 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. DONATE NOW

The ISF Skinny – April 2019 Edition

Kids Helping Kids

Addison Ficker, Isabella’s Dream Team

Blow out some candles and have a piece of cake!  It’s our youngest Dream Team member’s birthday!  Happy 12th Birthday Addison! 

What an honor to have Addison as a part of the ISF Dream Team.  She started running in 3rd grade through her elementary school.  Ever since, she has participated in several 5K races, pushing herself to beat her previous time.

Addison and her family volunteered at the ISF 5K/10K race last year, and they were amazed at how ISF was making a difference in our Charlotte community.  During this same time, a dear family friend, Noah Hays (#noahstrong), was battling cancer after being diagnosed at the age of 15.  Witnessing this cancer fight was tough for Addison, and she wanted to find a way to help with pediatric cancer.  

Addison learned about the ISF Dream Team and she thought this was a perfect fit for her to run and give back.  The Dream Team combines her love of running and helping others.  She wants to do whatever she can to help raise money because “no one deserves to have to go through what he (Noah) went through.”

Addison is training for the ISF 10K on September 29th.  Through her training, she has received support from friends and family through donations.  She and her friends recently raised over $100 at a neighborhood lemonade stand they organized.  Her family also hosted a hot dog cookout that raised over $500.  

We are truly amazed at your dedication Addison!  Happy Birthday from the Isabella Santos Foundation and the ISF Dream Team.

Inspired to help support Addison?  Click here to make a donation to her fundraising page.  

ISF Dream Team

The ISF Dream Team, created in 2014, is a running group that assists you in training to run the race of your dreams.  You can train for a 5k, 10k, half marathon, half marathon relay, full marathon relay, or a full marathon.  You are provided a training schedule, invited to group runs, and inspired by a phenomenal team of people.  Not only will you meet a dynamic group of people, but you will also be inspired through your friends and family as they support you through the training.  The ISF Dream Team has raised over $400,000 to date, with the funds contributing to our local Charlotte pediatric cancer community.  If you want to join the ISF Dream Team, we would love to hear from you.  Please email us at info@isabellasantosfoundation.org.