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A Cancer Mom’s Strength Comes Full Circle

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

Sarah Fruendt Sadler has many titles.  She is a pediatric oncology nurse at Levine Children’s Hospital, a wife and just recently added the title, Mom, to her name.  You would never know that she also holds the title for two-time childhood cancer survivor.  Diagnosed with Leukemia at two years old and relapsed when she was eight, Sarah vividly remembers the pain, the treatments, and most importantly, the strength of her Mom.

This is a little different kind of Cancer Mom story… 

By Sarah Fruendt Sadler

When people learn that I am a pediatric oncology nurse, they always cringe and ask why I would choose to work in this speciality. What they don’t know is that I am a two-time childhood cancer survivor myself. When I was two years old, I was diagnosed with Leukemia and spent the next two years in and out of the hospital completing treatments. 

Then at age eight, approximately five years in remission and three years off of treatment, the unthinkable happened – after a routine check, we received the phone call from my oncologist that the cancer had returned. If you ask me what I remember about that night, I’ll tell you that I remember my parents acting very serious and my mom crying as my dad sat us all down on the couch and told us the news. I couldn’t truly comprehend what this meant as I was so young the first time and I simply told them, “Well, I beat this thing once, I will do it again.”

My mother, however, had a strong memory of the cancer life before and was devastated it was going start all over again. She kept journal entries written to us kids and from that night, the entry dated June 4th, 2001 at 2:30am she wrote: 

“Our lives will never be the same, at least not for a while after our phone call from the doctor tonight. You were so young last time, you don’t remember how chemotherapy made you feel. Oh how I wish this was happening to me or daddy, not you. You’ve gone through so much already and you were just getting used to a normal life. And now we have to go through it all again and more intensive this time. You don’t understand how your beautiful looks will change, how weak & sick you will feel, and especially how you will no longer be able to be around your friends. Goodbye normal life.” 

As a mother now, I can’t imagine having to think these thoughts about my own son, knowing the truth of the difficult days that lie ahead. Although we had a huge network of support from our friends & church, no one can take the place of a mother as she spends each day taking her child back and forth to the hospital, keeping up with all of the medications, and trying to hold on to the smallest bit of hope that normal life will return someday. Not only does she have to use her strength and energy to continuously fight for her child with cancer, but daily puts on a brave face and works tirelessly to care for her other children and family as a whole along the way. It’s a tough journey for each and every child facing a cancer diagnosis, but it is too often forgotten how much a parent must sacrifice, especially a mother, as they watch their child suffer and feel helpless to control it. 

During my treatment, there was one particular point in time that I had become very sick and the idea of a full recovery seemed very distant. It still is extremely difficult to go back and read her journal entry to me that day as it said:

“We know that if you were to ultimately die from the Leukemia, that you would go to be with the Lord in Heaven. Oh how I would miss you terribly and it would be so hard – but I know you would be in a better place, the best place, and that I would see you again in Heaven some day.”

Can you imagine thinking those thoughts for your own child, knowing there is nothing you can do to help and you are forced to accept whatever happens? I truly hope that no mother ever does. But childhood cancer surrounds each and every one of us in some way and so much support is needed to help those facing these realities. 

I am 16 years cancer free, as a normal, healthy young adult with a wonderful family and such a rewarding career because of the support of groups advocating for children with cancer like the Isabella Santos Foundation. 

Raising funds for new, upcoming cancer treatments and research for those yet to be discovered means that more success stories like my own are possible for children in the future. Despite having battled cancer twice as a child, I have been able to live my dreams to the fullest. I was given the chance at a normal life – going to school, attending college, studying nursing, marrying the best husband a woman could ever hope for, and even starting a family of my own with our beautiful son. Now I spend my time giving back in the best way I know how, caring for patients and their families at the same hospital where I experienced it all firsthand many years ago. 

Although I have been gifted this amazing opportunity of a normal life, I still rely on the love and support of my mom as it shaped me to be the person I am today.  I know it fills my mother’s heart with joy to see how I have become a mother myself and she’ll never fully know how much her strength and courage has significantly impacted my life. We must all join the fight for not only the children with cancer but their families. We must do what we can to give them hope that their own child will get through this and have a normal life someday – it’s all we can sincerely hope for.

Donate and help us fund upcoming cancer treatments and research so that more kids have success stories like Sarah’s… that they are able to become Mother’s themselves one day.  We are working to help them BEAT cancer, GROW hair and LIVE their dreams.  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: Laura

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

By Laura Fedak

Laura is Mom to Madison, who was diagnosed with osteosarcoma a little over a year ago. Madison is currently cancer free and learning to walk strong again!

It was thirteen months to the day that I heard the words that would completely change what “normal” meant to our family.  On May 5th, 2018, I remember sitting in the conference room on the 11th floor of LCH and looking in the eyes of a stranger as he told me my sweet Madison had osteosarcoma.  It wasn’t “sugar-coated”; it was cancer and that was it.  The team told us of the treatment plan and timelines.  We got a rundown of all the medicines along with what to expect before, during, and after chemo.  We heard 15-letter names of medicines I could not pronounce (but in time they became part of my everyday vocabulary).  They told us a lot, but what they did not tell us, what they could not tell us, was how to feel.  They could not tell me that the moments before her first chemo treatment I was going question if what I was allowing to be put into Madison’s body was okay.  They couldn’t tell me that after the tenth time of being woken up in the same night by the words, “Mommy, I need to go potty,” I would roll over on the pull-out sofa and beg for this all to be over.  They couldn’t tell me that I was going to question every single scan, every dose of radiation, and every procedure Madison would be put through.  They could not tell me that I was going to consider breaking her out of the hospital on many occasions just to take her to McDonalds for some french-fries that she wasn’t going to eat.   These amazing doctors that I still trust with Madison’s life could not tell me how to handle the seemingly impossible moments, but what they did tell me was that whatever I was feeling was normal.  And that was the beginning of me learning that my support would come in some pretty amazing ways.   

Some people supported us from a distance:  a card in the mail, a call when I least expected it, or a text that included a Bible verse I didn’t know I needed to hear.  Other people needed to be close to show their support.  A lot came to the hospital and brought toys for Madison, I think mainly because they need to see that she was okay.  And there were those that couldn’t bear to see Madison hooked up to machines, and they came by once we were home.  No matter how they supported us, the fact of the matter is that they did it because they knew we needed it.  

For me, support came when I least expected it.  Like when my mom drove two hours just to let me go out for a run because she knew I needed a break.  Or when my best friend called and I told her repeatedly, “I’m fine, I don’t need anything,” yet she shows up two hours later anyway with games for Madison and chocolate for me.  Support came when my entire school rallied behind Madison and created a Relay for Life team in her honor.  It happened when our entire community wore “Team Madison” pink the day she “rang the bell”.   

But truth be told, the best support I received came when people took the time to take care of Madison.  There were so many days where I felt I could not do anything right; when Madison would stop speaking to me because we had just spent so much time together, or when she was mad at me because I would not “break her out” and take her home.  And that is when I found some pretty special people who I feel blessed to call our “hospital family”.  To the nurses who don’t get paid enough to deal with the fits Madison gave them, yet took the time to play Barbie’s or with playdough – Thank you!  To her doctors and surgeons who were far too busy to sit and chat with Madison, but did because she asked – Thank you!  To our child-life specialists who somehow got Madison to get out of bed and walk – Thank you!  To the people in the cafeteria who spoke to Madison and told her how beautiful her smile was – Thank you!  To every single person in Seacrest Studios who made sure that Madison was not seen as a patient but rather as a rock star – Thank you!  To the entire ISF team who would rearrange their schedules just because you knew Madison needed some play time – Thank you!

The importance of being supported is just knowing that there are people who are willing to help.  

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: Ashley

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

By Ashley Davis

Ashley is Mom to Ava, who was diagnosed with high risk acute lymphoblastic leukemia at 18 months old in 2017.  She is currently being treated at Levine Children’s and her end of treatment date is in December, 2019.

Support means everything to a family going through a cancer diagnosis. Whether it’s a lot or just enough. Because being/ feeling alone during this hike is extremely difficult and painful. 

Support can come in many different forms and ways. Sending a text, giving your paid leave to the father who’s working 40+ hrs a week to make ends meet because his wife just had to quit her job to take care of their sick child, sending a meal, calling us to check on us (because you will never bother a family going through this, unless they tell you otherwise) there’s never too much love and support you can give a family going through cancer. It may seem small to you but it’s huge to them. Because they’ve had family they’ve talked to weekly before their child was diagnosed to not talking to them at all now, Some feel like they’re in the way and others are judging you for your decisions or the way your feeling, the person they could always count on to talk to is either too busy to or too scared to talk to you, all because in one second your life changed. 

Ava’s Leukemia took one second for everything to turn upside down. Support the sibling who feels like she’s in the way or feels she can’t talk to her parents because she doesn’t understand what’s going on now. She was preparing for her first week of kindergarten one week and then everything changed. Her mom tries not to get upset in front of her, but she knows the crack in her voice before she starts to cry. 

Support the sibling who is coping just like her parents are, we can get through this! Only 2 more rounds of high dose methotrexate, pray that she doesn’t get mucositis so that we can go home to spend time with Zoey this weekend, because of the flu ban she can’t come to see us at the hospital. I’ve felt like I’ve walked through fires, this is the hardest thing I’ve ever done. 

Support – a hug, a gesture, love is powerful to a family who’s life is now unknown. Day by day, second by second sometimes is how we have to live. Because if we let our minds get too far into the future it worries us. Will my child still be here?  Because there’s a fine balance between the cancer killing her and the chemo also wreaking havoc on her tiny body.  Will my healthy child resent me for what I’ve had to do to make it through this, will my marriage make it?  You begin to question everything, your faith, your decisions, everything. Could this be why? Why God? Why did we do that? Why aren’t they here for us when they know we need them? There isn’t one part of your life that is touched by the hell you have to endure. Support goes hand in hand with success, success for everyone. We all need support, be there for each other. Support cultivates love, friendship, faith, strength, and hope. 

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: Kelly

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

By Kelly Weaver

Kelly is Mom to Andrew, who was diagnosed with neuroblastoma at four months old.  Andrew is currently 4-years old and cancer free.

“We found a mass in your son’s chest. At this time we do not know what it is, so we are transporting you to Levine Children’s Hospital. You will be a direct admit to the 11th floor, Pediatric Oncology.”  These words will haunt me forever. As I held my four month old son, it seemed surreal that the hospital pediatrician could be talking to me, about my son, and that she used the words “pediatric” and “oncology” in the same sentence. A few days after being admitted, my son was diagnosed with neuroblastoma. 

The outpouring of support my family received was heartwarming and beyond what we could have imagined. We were very lovingly supported by our family and close friends. Through Andrew’s course of treatment, we learned how many friends we really had on our support team. We received notes of encouragement, via cards, social media, and Caring Bridge posts, along with gift cards for meals. Neighbors walked our dog on a routine schedule they set up and home cooked meals were provided at the end of long clinic days. We were taken care of by these gestures of tangible support. Our friends and family took care of us, so we could take care of Andrew. To me, showing support, means never letting anyone think they are forgotten. Everyday we received inquiries about Andrew’s health, what we needed, and how individuals could assist in raising fund for pediatric cancer awareness and research. Andrew is now four, thriving, and in remission for over three years. Our visits to clinic and Levine Children’s Hospital are a combination of yearly survivorship appointments, dropping off donations, and visiting friends who are in the midst of their own fight against pediatric cancer. 

My family found ourselves in a terrifying situation, but not alone. Via the pediatric cancer community I now have dear friends who share the same fears as me. Fears about relapse, fears about long term side effects, and fears about the lack of funding for research. But through these friends, I also have a level of support, understanding, and reassurance that no child will fight pediatric cancer alone. We won’t let it happen.

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

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

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: