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