Superhero Lincoln

Written by: Courtney Kurtz, Lincoln’s mama

 

When Courtney took her son Lincoln to the doctor for a check-up, she never thought it would result in a hospital visit and a cancer diagnosis. 

Lincoln didn’t seem to have any symptoms that anything was wrong. But when the pediatrician examined him and found that the 18-month-old’s liver was enlarged, he immediately sent them to Nationwide Children’s Hospital.

January 2017, Lincoln was diagnosed with Acute Lymphoblastic Leukemia T-cell. 

Here is Courtney’s perspective of their cancer journey…

Q: What would you like the world to know about your cancer journey with Lincoln?
It’s been an incredibly hard journey, but Lincoln is an outgoing kid who loves people. He has spent more than 100 days in the hospital, and through it all he has kept his spirits up.

Cancer treatment is really hard on kids and there are many side effects. During the first 30 days of treatment, Lincoln lost the ability to walk and crawl. He stopped eating and lost a lot of weight, and we nearly had to have a feeding tube put in. But we were able to work through it with various medicines, and after the first nine months, he started gaining weight again.

There is a tremendous need for more research for childhood cancer.  These kids are amazing and deserve better treatment options with fewer toxicities and long-term side effects.

Q: What did others close to you do for you and your family that made a difference?
We are thankful for all the support we have received, including meals, financial assistance and gifts for Lincoln.  These all helped us get through some really difficult times.

Q: What gave you strength during your journey?
It’s been really hard, but my child is my everything – I’d do anything for him. This kid is amazing, and his spirit is unbreakable and that gives me strength.  Right after Lincoln’s diagnosis, I took two months off work, and then had to go part-time. I didn’t want to miss a single minute with my baby. My employer has been helpful and understanding, letting me have time off when he’s sick or has appointments.

Q: Is there a program at Cancer Support Community that has helped your family?
The monthly moms’ support group has been a big help.  It is always great to connect with other moms and know you’re not alone. I’ve found that during the intense times, I run on adrenaline. But when things get a little better, the emotions start to creep up on me, and that’s when the support group is helpful.

Lincoln went to an art program in the Kids Korner and he loved it. He is immuno-compromised so he can’t be around a lot of other kids, especially if someone is sick. He longs to play with other kids, but it’s been hard to find a safe space for him to do that. So it’s nice to have these activities at Cancer Support Community in a safe environment, where other parents know not to bring a sick child into the program.

Q: Where are you now in your journey with cancer? 
For his type of cancer, treatment lasts for 3½ years. Lincoln had nine months of initial treatment to get the cancer into remission. Now, he receives daily, weekly and monthly chemo and steroid treatments. He takes nausea medicine every day, but still throws up a lot. He’s had a rougher road than most with the side effects and hospital stays. But he’s in maintenance now, after almost 3 years. The treatment will end in May 2020, although there will be more tests after that to make sure there is no recurrence. But for now, Lincoln has started preschool and is enjoying being a kid as much as possible.

Please consider becoming a Superhero by donating to Kids Korner for children with pediatric cancer and their families. Click HERE to donate.
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Written by: Courtney Kurtz, Lincoln’s mama   When Courtney took her son Lincoln to the doctor for a check-up, she never thought it would result in a hospital visit and a cancer diagnosis.  Lincoln didn’t seem to have any symptoms that anything was wrong. But when the pediatrician examined him and found that the 18-month-old’s liver… Read more.

Superhero Logan

Written by: Jessica Burrey, Logan’s mother

Two days before his first birthday in 2018, Logan was diagnosed with anaplastic ependymoma grade 3, a brain tumor.

Q: What is one thing you wish the world knew about your cancer journey with Logan? 

This type of tumor is relentless and while we are so incredibly thankful that Logan is doing so well, the fear and worry will never go away. Recurrences happen even years after initial diagnosis and the stress of that fear is very tough on our family.

Logan is amazing and has worked so hard to get strong and overcome so much. God made him stubborn and strong willed because He knew Logan was going to face this. Due to the tumor and surgery, Logan has balance, strength, and gross motor difficulties. He wore a hearing aid for 8 months due to a moderate to severe hearing loss. That has improved as well, and he no longer wears it.

Q: What did other people do for you and your family that made a difference?

Our friends provided food for our family, so we didn’t have to worry about that. They also helped watch our older son, who was 5 at the time. In addition, friends provided gift cards to help with travel expenses, thoughtful texts and messages that I could read late at night when I couldn’t sleep, toys for the boys so they had different things to play with at the hospital and at the apartment when Logan was in treatment.

Q: What gave you strength during your journey?

First and foremost, faith. Support from friends and family, visits at the hospital from friends and family, encouraging notes and letters from others.

Q: Is there a program or service at Cancer Support Community that has helped your family?

The support group for cancer moms helps me a lot. Being around other mothers who are going through the same thing, I know I’m not alone on this journey. The boys love the activities in the kids’ group, Kids Korner. There was a cooking class where they made funny face pizzas and an art class, too. They had fun with the other kids.

Q: Where are you now in your journey with Cancer?

Logan now gets scans every 4 months on his brain. His spine is scanned every year to make sure the tumor hasn’t metastasized to his spine. He receives weekly physical therapy to work on deficits caused by the tumor and life-saving surgery and radiation.

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Written by: Jessica Burrey, Logan’s mother Two days before his first birthday in 2018, Logan was diagnosed with anaplastic ependymoma grade 3, a brain tumor. Q: What is one thing you wish the world knew about your cancer journey with Logan?  This type of tumor is relentless and while we are so incredibly thankful that… Read more.

22 and thriving

Written by Alexsandra Dietrich

 

Hello, my name is Alexsandra (Alexsa) Dietrich. I am 22 and I am a Hodgkin’s Lymphoma cancer survivor.

On February 17, 2018, I found a large lump in my neck that had been growing over 72 hours. For months I had been diagnosed three times with bronchitis and once with pneumonia. I thought because I was from Florida and was not used to the Ohio weather, that was why I had been feeling off for so long. After seeing the lump progress so quickly, I went to the urgent care clinic that had been diagnosing me with the other illnesses. They sent me to Riverside Hospital’s emergency room, where I sat for six hours, waiting on blood tests and scans.

A doctor then came in and sat eye level with me. He told me my scans “lit up like a Christmas tree” and in his professional opinion he would be surprised if I did not have lymphoma. I was then admitted to the hospital, where I stayed for five days, having more tests done and a biopsy to remove the head of the mass sticking out of my neck.

As a student at The Ohio State University in the middle of Spring semester, I decided it would be best for have follow-up treatment there back home in Florida. I had to drop all my classes and move back to Florida and, just like that, in less than a week my whole life was flipped upside down. I became a patient at Moffit Cancer Center in Tampa, Florida, where we then began more tests to determine the stage and treatment plan.

After what felt like an eternity, it was determined I had Stage 2B Hodgkin’s Lymphoma. With this diagnosis, I had to complete a mandatory 12 rounds and 6 months of consistent chemotherapy. I received the ABVD treatment plan and went to a 5 to 6-hour chemo drip every other Tuesday. During this time, I lost my hair, could not walk without a cane, could not eat without medicine, and had other major side effects.

I was a strategic communications major before being diagnosed and am happy to say during treatment I changed my course of life and am now in school for social work in hopes of working with the oncology population. I was able to finish all my chemotherapy, have clear scans, and ring the bell to signify completion of my treatment on August 14, 2018, a day that I will never forget. Although I endured something difficult, I never gave up and never stopped fighting and I am grateful to be here today.

I’m back in school now, studying social work and have had the wonderful opportunity to do an internship at Cancer Support Community Central Ohio. In my role there, I have met so many other cancer patients and survivors, plus their family members and friends, who also are affected when someone they care about has a cancer diagnosis. I’m also helping the organization raise awareness of the impact of cancer on people my age and providing a safe space online for young people in their 20s and 30s to connect with each other and share their journey.

Cancer changed my life, but it changed it for the better. I hope to continue to show people the light at the end of the tunnel and change other people’s lives too.

Alexsa’s survival bell ringing video here. Warning: you will probably cry

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Written by Alexsandra Dietrich   Hello, my name is Alexsandra (Alexsa) Dietrich. I am 22 and I am a Hodgkin’s Lymphoma cancer survivor. On February 17, 2018, I found a large lump in my neck that had been growing over 72 hours. For months I had been diagnosed three times with bronchitis and once with… Read more.

Scarlett and Mommy

Written by Melissa James, Scarlett’s mother

I became a cancer mom on a sunny, beautiful day in April. My sweet two-year-old girl, Scarlett, and I were having one of those days that every mom yearns for, just us, our mommy and me time. We decided to read some books at the library to end our perfect day. Halfway through a book, I saw Scarlett’s face change. She looked up at me, let out a cry I will never forget, and collapsed in my arms. I ran screaming for help in that quiet library. I do not remember how we got to the hospital, but we did. I just know that I held her hand the entire way and she never grabbed mine back.

After a long day, we were sent home with no answers and no plan, but with a promise of an appointment with a specialist. I was furious, terrified, and not ready to give up. We drove to our pediatrician and I demanded a scan. We were not given one, but as we left the building, my daughter collapsed in pain again – this time, in front of them. We were taken for scans.

This part of my story is blurry. All I can remember is a tiny room, with a strategically placed box of tissues, and a man in blue scrubs saying words that I did not hear. I was too focused on my sweet, little pig-tailed princess, who was laying cradled in my arms, sleeping after a long, scary day. I watched my tears fall onto her tiny cheek, and gently swept them away.

“I’m sorry to say, but your daughter has a mass in her colon. It’s decent in size and from our images, appears to be a tumor. At this time, I hate to say the ‘c’ word, but it’s possible. We are going to need to do some more testing and…”

That’s it. That is all I heard. Inside I was numb. Gone. I just kept looking at my sweet baby’s face and thinking of life without it. I was crying in closets, showers, and bathroom stalls. I was going through the motions necessary for Scarlett, but I was devastated, and felt like I was trying to hold onto something that was slowly slipping away. In fact, the first night in the hospital room I laid awake watching her every breath. Unable to shut my eyes, I climbed into the crib with her. I was afraid that I would wake up and she would be gone–that I wouldn’t remember her smell, touch, or the sound of her little snores.

Before this, I HAD a happy child and husband, a brand-new home we built for our daughter, a wonderful job, and a routine that was feeling SO secure that my husband and I were trying for baby number 2. Now – my career? Gone. Our routine? Gone. That new house? Gone. That marriage? Crumbled. And, that baby? Passed away by miscarriage due to stress.  Still, I could swallow ALL those losses, because I hadn’t lost my daughter.

Scarlett, though, has sadly lost more than anyone should. She lost her childhood, her carefree life, and most of her colon. Today, Scarlett suffers from decreased immunity (she cannot play on public playgrounds, go out when viruses are high, or attend school half the time), and she has GI issues that land us in the ER every few weeks. Her PTSD and anxiety are often so severe that parking garages (like the hospital’s), gloves (like a doctor’s), and children’s tattoos (like the numbing strip for IVs), are triggers that remind her of her surgeries and cause panic attacks. She has lost friends to this disease, watched them fight and wither. She has had to grow up, like all pediatric cancer patients, very quickly. Yet, we are lucky, because most pediatric cancer patients also grow up with heart damage, hearing loss, liver problems, and loss of limbs.

Scarlett managed to make it to remission without those issues. Yet, she still must endure hospital visits and scans every few months. You see, there is no prognosis, no plan, we are just living day to day, like most pediatric cancer patients. We will always fear scan days, overreact to comments like “I don’t feel good,” and worry about the future. We will always be scared. I will always be scared.

This is why I searched for support online, and that’s how I found Cancer Support Community Central Ohio. When I met with them, I knew I had found a place where the other moms I knew could find support. I could find support. The people there are so supportive and understanding. They make it possible for me to share my fears, to not feel so alone.

But the sad truth is I’m NOT alone. In fact, a child is diagnosed with cancer every 3 minutes. People often don’t believe that there are 16,000+ cancer moms in one of the national support groups and more than 120 in my local support group, Feel Better Mom. Yes, that’s 120 local moms that I speak to daily, stay up late with, visit at the hospital, and cry with. And 120 kids and angels that I love.

I’m so grateful that Cancer Support Community Central Ohio has programs for all these pediatric families I’ve become so close to. There are support groups and individual counseling, grief counseling, resources to destress, including yoga, art therapy, and cooking classes, and programs for our cancer kids and their siblings to get together and have fun while they learn. All of it is SO valuable and needed. And it’s all provided at no cost, which really important, because sadly, as you can imagine, pediatric cancer comes with extremely high bills, the loss of jobs, and very little time and money for self and emotional care.

Today, Scarlett is four and she’s in remission. She recently had a routine scan that came back clear! We are continuing to attend the programs at Cancer Support Community, which have been an enormous help. Cancer may have broken our hearts and made us question everything, but all the supporters at Cancer Support Community make us believe in humanity again. You make us see that there is still some good. That we will get through this, together, as a community.

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Written by Melissa James, Scarlett’s mother I became a cancer mom on a sunny, beautiful day in April. My sweet two-year-old girl, Scarlett, and I were having one of those days that every mom yearns for, just us, our mommy and me time. We decided to read some books at the library to end our… Read more.

Remembering My Brother

By Matt Simyak, Volunteer

Over the last 3 and a half years my brother, Marc, courageously fought Stage 4 Colon Cancer.  His fight ended on August 11th of this year.  My mother and father have struggled to cope with the loss of their son and I have struggled with the loss of my only sibling and best friend.  He was 41 years old when he passed.

What makes it difficult was the fact that my brother was a happy soul and was loved by everyone who knew him.  He lit up the room with his infectious smile and people would reach out to him because he had a way of uplifting anyone who was feeling down.  My parents and I were all looking for a miracle and I guess the miracle was that we had 3 and a half years with my brother after he was diagnosed with cancer.

It wasn’t until the final month that I realized how strong my brother really was.  In the 3 and half years, he had over 10 surgeries, well over 150 doctor visits, chemo off and on, radiation and his blood drawn more times than I can count.  Yet he never wanted people to pity him or know how much pain he was in.  Throughout the entire period he dealt with cancer, my brother inspired so many by posting updates on his status and he always remained positive despite the news he received.  He tried so hard to be strong so my kids didn’t think their Uncle Marc was not any fun.  In fact, 3 weeks before he passed, he willed himself to go to Disney’s Typhoon Lagoon with me and my kids.  He even went on a few water slides because he wanted my kids to remember their Uncle Marc as a fun and loving uncle.

Marc will always be remembered for his smile, personality and the carefree way he took on life.  Though my parents and I struggle with it every day, we know my brother is in a better place, free of pain.  The last week of his life he told us that he will always be with us in some way, shape or form.

I started volunteering at Cancer Support Community Central Ohio because I know what it feels like as a family member of someone consumed by cancer.  I want to continue to spread the word to people that there is a place where you can get support and to meet other people who might be dealing with the same cancer or loss of someone.  I love my brother and always will and my commitment to Cancer Support Community Central Ohio is strong because I want to help people who are dealing with this awful illness.

 

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By Matt Simyak, Volunteer Over the last 3 and a half years my brother, Marc, courageously fought Stage 4 Colon Cancer.  His fight ended on August 11th of this year.  My mother and father have struggled to cope with the loss of their son and I have struggled with the loss of my only sibling… Read more.