Posts

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:

True Definition of a Mother, The Cancer Mom Series

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

She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

-Erin Santos, Isabella’s Mommy

**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

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: Dianna

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

By Dianna Lariviere

Dianna is mom to Max, who currently is in treatment for Stage IV High Risk Neuroblastoma.

Dianna & Max

When Max was diagnosed on August 5, 2018 our lives were forever changed, and it’s been extremely difficult in so many ways we didn’t even imagine possible.  We live in a very rural community and it felt like everyone, even without knowing us personally, immediately dropped to their knees in prayer.  The outpouring of love for our son was and still is indescribable.  We moved south 8 years ago and to have so many people come together for our son still brings me to tears.  The impact Max has made in a weird way helps me.  His disease has put so many parts of life into perspective for not only us but everyone that knows him or follows his journey.  

It took a very long time for me to feel like I was ready to truly speak about being a cancer mom.  I have developed very bad anxiety and to be honest, I am angry.  Sure I do the updates and post about how pediatric cancer deserves more federal funding but to really talk in depth about the situation didn’t happen until more recently, and we are 9 months into an estimated 3-year treatment plan that’s 5 months behind the original schedule due to various factors.  Our social worker reached out to another cancer mom who’s son had a similar diagnosis and is doing well.  My anxiety and worry was really getting the best of me and I needed to hear from someone who lived it that there was light at the end of this pitch black tunnel.  She checks in all the time and has really been a blessing to me.  I don’t know that I’ll ever be able to show her how much she has helped me but someday I’ll try!  I’ve met other cancer moms that have treated at our hospital, Levine Children’s, and having someone who has lived the nightmare that you can openly talk to, that completely gets what you are saying without judgment, is a huge stress reliever.   You will never meet a group of more badass women (am I allowed to say that?!) than those who have had to watch their child, many times helplessly, endure treatment for cancer.

I am extremely thankful that we are treating at a hospital that provides such close care to the patient and family.  It really is a family.  These children bond so closely with the nurses and oncologists, social workers and child life specialists.  I was going to count how many days we have spent in the hospital but I don’t think that’s a good idea because it’s way more time than we have spent home. 

The parental support is so important.  I have friends and family that check on me multiple days a week.  I don’t always respond and they don’t care.  They just want me to know that they are there, from a distance, ready whenever I am for whatever I need – a cry, a scream, a hug, to vent or an adult beverage and not talking about the c-word at all.  I’m told quite often that I need to take care of myself to be able to take care of Max.  I’m still working on that part.  I love to do arts and crafts and garden but it’s hard when you aren’t home often or your child isn’t strong enough to allow for you to get that release.  Trying to fit in family time is difficult as well.  It’s not often the 3 of us are all together. 

I will forever be a cancer mom.  I’ll never be that person I was before I was told my child has cancer.  While everyone is wishing for their child to make the sports team or be top of their class or to not catch the stomach bug being passed around, I’m wishing for survival.  So to all those who have reached out, prayed and sent positive vibes, fed us and provided us with gas money, sent Max gifts to put a smile on his face and provided an ear to talk with – THANK YOU!  Your support matters more than I could ever put into words.

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: