Posts

Surprise, it’s Christmas in July!

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Ho ho ho! Surprise… it’s Christmas in July! Our ISF elves have been busy picking out the best toys for some extra special boys and girls. Today was the big day! Santa ditched his summer surfboard and broke out his sleigh to travel all the way to Levine Children’s Hospital with a special stop at the oncology floor and clinic. Thank you to all of Santa’s ISF elves and supporters who make magical days like today possible.

Huge thanks to Toys and Co. for helping our elves with the toys!

A Cancer Mom’s Strength Comes Full Circle

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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 the families and especially the moms. 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: Ashley

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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 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

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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 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: Brandi

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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: