Meet Ava, a 16 year old acute lymphoblastic leukemia (ALL) warrior. Ava is a singer/songwriter based in Nashville, TN. ACCO featured Ava in our Circle Up series earlier this year.
The story detailed below is an account written by Ava.
I’ve been singing for as long as I can remember and started taking guitar lessons when I was 7 years old. At age 10, I performed on stage with Kelly Clarkson at a restaurant. This fired my love for entertaining and I started songwriting after being invited to a writer’s night. Since then I’ve been writing and playing gigs all over Nashville. June 2019, I was doing a small tour in Texas, performing at “Cook Children’s Hospital” and a few local venues. During my sets, I was getting out of breath very quickly. When I was flying home, I couldn’t walk terminal to terminal without stopping to catch my breath. My mom (a retired nurse) also noticed I was quite pale. At that moment we knew something was wrong.
We went to my pediatrician as soon as we got home. She ran my blood counts twice because they were so low. She didn’t know exactly what it was, so she sent me to Vanderbilt Children’s Hospital. We were hoping it was another disease, but when six doctors walk in, it’s not good. They diagnosed me with ALL and admitted me immediately. The next day, I was in surgery to get a bone marrow biopsy, a lumbar puncture, and have my port placed.
I was getting chemotherapy almost every day. With leukemia, they want to get you in remission in 30 days, and then the rest of your 2 1/2 years is preventative (so it doesn’t come back). A week into my hospital stay, I was able to go home for a week but was quickly sent back to inpatient after spiking a fever.
During my treatment, I hit quite a few road bumps. I found out that I had a mutated form of leukemia known as B-cell, which makes it much harder to treat. They said I would most likely not get in remission in those 30 days. Since I was also on a high dose of Prednisone (120mg a day) I developed medically induced diabetes, and retained fluid. My body eventually adjusted and I was no longer diabetic, but the fluid retention got worse. One night I was rushed to the ICU when there was a significant amount of fluid in my lungs, and I couldn’t breathe properly. My blood counts stay quite low, so I get blood product transfusions very often. I have had more than 50 blood transfusions. The biggest setback, however, happened when my mother found something inside my nose.
Since the chemotherapy damaged my immune system, normal infections I would fight off could now grow freely. One of these infections was found in my nose. When my mother looked, most of my nose was black and necrotic. She called in the nurse, who called in the doctor, and no less than six hours later, I was in surgery. I proceeded to have four more surgeries to remove the fungus. By the sixth surgery, the surgeon couldn’t take any more tissue without destroying the shape of my nose. Things changed, however, when they came back in with a new treatment plan, a new medicine called blinatumomab. This treatment would allow me to still fight cancer while keeping my immune system. With the blinatumomab and a few other medicines, I can happily say months later I’m still fungus free!
We were in the hospital for about a month and a half straight, but there was never a day I was alone. With the help of friends and family, I kept staying positive. I looked at cancer as another crazy chapter to add to my life story. There were days I felt defeated, but a friend would show up and start singing songs and telling stories with me. There would easily be at least 10 singer/songwriter friends in my hospital room at once. The Nashville community has been so supportive and we even sold out my benefit concert in August 2019. Throughout my whole journey, I’ve managed to stay positive and see the good in all the bad.
I am currently going to clinic twice a month, once for lumbar chemotherapy and once for lab checks. I am playing where I can, whatever is covid friendly. I am songwriting like crazy and feeling really good and I’ve been staying busy with online school and online events. I post regular updates on my social media (@AvaPaigeMusic) and am doing well! I’m still performing, writing, and kicking cancer’s butt!!!
The American Childhood Cancer Organization provides resources and support to families of children with childhood cancer. Please donate so we can continue to provide our services free of charge.
Teens and young adults are a unique population of cancer patients. They commonly get different cancers than children and older adults, their cancers behave differently, and they face distinct challenges. Here’s a look at how cancer affects this age group.
Most Common Cancers in Teens and Young Adults
For teens and young adults, the most common cancers include:
If your doctor suspects that you have cancer, they might order a blood test or a urine test to look for abnormalities that could be a sign of cancer. They might also order imaging tests such as X-rays or MRIs. The most conclusive way to diagnose cancer is with a biopsy, where a doctor collects a sample of cells from the suspected tumor and sends them to a lab, where they are examined under a microscope. A biopsy can also confirm the type of cancer you have and its grade, which will help determine your course of treatment.
Cancer in teens and young adults is often diagnosed late, when the cancer is at a more advanced stage. This can be due to a number of factors:
Teens and young adults are usually healthy and don’t regularly see a doctor.
Teens and young adults are more likely than other age groups to not have health insurance.
Cancer in teens and young adults is rare, so they might be inclined to blame their symptoms on something else.
Treatment for Teens and Young Adults with Cancer
Treatment for cancer in teens and young adults depends on many factors, including the type of cancer, the patient’s age and how advanced the cancer is. Most cancers are treated with chemotherapy, radiation, surgery or a combination of the three.
Teens and young adults may be treated on a pediatric cancer protocol or an adult cancer protocol. Research shows that for some types of cancer, like acute lymphoblastic leukemia, survival is much improved if they are treated on a pediatric cancer protocol.
Challenges for Teens and Young Adults with Cancer
Dealing with a cancer diagnosis is difficult for anyone, but teens and young adults with cancer face special challenges. Their diagnosis is coming during some of their most formative years, when they are discovering who they are. At a time when they are striving to become more autonomous — maybe they’re starting their first job or moving out of their parents’ home — cancer forces them to become dependent on their parents or others for support.
For teens who are undergoing puberty and becoming more aware of their body image, the hair loss, weight changes and other physical changes that come with cancer treatment can be especially difficult. Teens are also in a period where relationships and fitting in with their peers are of the utmost importance, and the isolation of cancer treatment can be particularly devastating for this group.
Unlike younger children, teens and young adults are also more aware of what a cancer diagnosis means in terms of their survival and possible late effects. For all these reasons, it can be very helpful for teens and young adults with cancer to talk to a professional who has experience working with young people with cancer.
Journaling can be another helpful way to process the complex emotions of a cancer journey. Dance in the Rain: A Journal for Teens with Cancer is designed to help adolescents navigate the ups and downs of their diagnosis, and they can register to receive this and many other resources free of charge by completing this form.
Late Effects of Treatment for Teens and Young Adults with Cancer
The treatment for cancer in teens and young adults can sometimes cause side effects that appear months or years after treatment has ended. These late effects can include:
Fertility problems
Hormone imbalances
Heart or lung problems
Hearing or vision problems
Secondary cancers
Because of these risks, it’s important for survivors to follow up with their doctor in the years after treatment ends, and to be upfront with any new doctors about their medical history. Kelsie’s Story: Living and Loving BIG Kelsie had been battling persistent headaches for months. Then she started losing her vision. At 13, cancer was the furthest thing from her mind, but that’s what the tests would confirm she had: glioblastoma, an aggressive, fast-growing brain tumor. Kelsie underwent surgery to remove the tumor, followed by one month of radiation and chemotherapy, and another year of chemotherapy. For 18 months after treatment, Kelsie was cancer free and thriving. She was active in her school, community and church, and even made the varsity cheerleading squad one month after brain surgery. “She never stopped striving for success in everything she did,” her mom, Tracey, says. Then, in January 2018, the cancer returned. This time, there were multiple tumors and surgery wasn’t an option. Kelsie entered a clinical trial in the hopes of beating her cancer again, but it wasn’t enough. She passed away just weeks after her 17th birthday. “Kelsie loved the people in her life BIG and with all she had. Her life made such a huge impact on everyone that knew her,” Tracey remembers. “Cancer can take many things from us, but it can never take the love and the legacy our loved ones leave behind.”
The American Childhood Cancer Organization provides resources and support to children, teens and families facing a childhood cancer diagnosis. Please donate so we can continue to offer our services free of charge.
In early October, Elizabeth was awarded the 2021 4-H Youth in Action Pillar Award for Civic Engagement for her work to help support kids with cancer and their families. When Elizabeth was 12 years old, she was diagnosed with neuroblastoma and during hospital stays she found her family frequently visiting the store to get supplies like toothpaste and shampoo that they may have forgotten.
“I knew as soon as I got out of that hospital, I wanted to do something about that for other families” remembers Elizabeth.
In 2016, Elizabeth launched her program, Crowns Fight Cancer, to help kids with cancer and their families. Elizabeth solicited donations like toiletries and snacks and donated them directly to the local children’s hospital.
To date, Elizabeth has donated more than 60,000 essential items to five different children’s hospitals in her area in the past four years.
“4-H has empowered me to grow as a leader, not only in my community and state, but on the national level in spite of my long journey with Stage IV High Risk Neuroblastoma cancer,” she said. “At the time of my diagnosis, and subsequent relapses and progression, 4-H has been my constant companion, encouraging me to be who I am and teaching me to be resilient when life presented me with the toughest challenge a child needed to overcome: cancer.”
The American Childhood Cancer Organization provides resources and support to families of children with neuroblastoma and other childhood cancers. Please donate so we can continue to provide our services free of charge.
The story detailed below is an account written by Irene.
When I was 20 years old, I was living a fast paced life. I was a full-time university student, working full-time, and a single mother to my son Jason. All that came to an abrupt halt when I was diagnosed with a rare pediatric bone cancer called Ewing’s Sarcoma.
In early 2014, I developed an indescribable, deep ache in my right knee. It took months to get a diagnosis because my symptoms were minimized by doctors. I was told I was over-exaggerating and needed therapy, needed to lose weight, and was accused of pain pill seeking. The pain, and frustration, kept getting worse until I firmly demanded a doctor order imaging on my leg.
“Imaging is showing something bad,” the doctor said. This “something bad” came as a relief because I was finally going to get answers. I underwent a bone biopsy and had to wait a week more for my results. The day after celebrating Mother’s Day with my then 3 year old son, I received a call from the surgeon. “You have a rare cancer called Ewing’s Sarcoma. It is very aggressive, but know that we will fight this even more aggressively.” I collapsed into my kitchen chair in disbelief and put my face in my hands. I didn’t think cancer could happen to me.
I met the chemotherapy oncologist the next day and she told me it was urgent we started treatment so I only had a week to get my affairs in order. I would not be able to continue my schooling and work. Chemotherapy treatment for Ewing’s Sarcoma is one of the toughest cancer protocols out there since there has not been any innovation in years. There is little funding into researching this disease because each year there are only about 200 Ewing’s diagnoses per year in the United States. We have a population of about 330 million.
Since the drugs are so old and toxic, much of the treatment is required to be inpatient. At this point, chemotherapy and surgery didn’t scare me. Being away from Jason and what would happen to him if I did not survive was the most frightening thing about this whole ordeal. Thankfully, Jason’s paternal grandmother stepped up to the plate and became Jason’s primary caregiver for the 10 out of 12 months that I was inpatient, fighting this beast. I knew he was in good hands but having to essentially “give him up,” tore me apart.
In the hospital I did everything I could to make sure my son would remember who I was and that I could still provide him with guidance and comfort, even if I passed away. I recorded my voice reading children’s books for him. I recorded videos for him. I wrote letters to be given to him as he went through different milestones in life that I might miss out on like graduations or his wedding. I also wrote him letters for things we all go through, like failing tests, feeling inadequate, dates, heartbreaks, and more.
I arranged to see him as often as possible, so he would visit me at the hospital on weekends. Seeing him was what motivated me to continue treatment, but I definitely had some low, lows because treatment was absolutely torturous. Staff at the hospital jokingly called me “Murphy’s Law Girl” because almost every possible medical complication that could go wrong in treatment, did go wrong. I laughed along too. After everything I’d been through, I developed a dark sense of humor as a coping mechanism. But there were points that I would beg for treatment to stop so I could go home and be a mom. I was sternly reminded that if I stopped, I may only get a few months with Jason. If I pushed through, I could possibly be a mom for years to come.
In September 2014, I had limb-salvage surgery where a surgeon removed the cancer. I felt overjoyed that I got to keep my leg because I had known since treatment started that amputation was always a possibility. I was almost halfway through treatment. I started seeing the light at the end of the tunnel.
All that came crashing down in December 2014 when I went home to visit my son for a couple of days. I quickly declined and went into septic shock. The home nurse called paramedics and the amount of pain that I was in could not be controlled because I developed a tolerance to opiate medications after being on them for treatment. The paramedics said there was no more time to try to get me comfortable, so I had to brace myself. I swear with everything in me that I tried to brace myself because I knew my son was able to hear everything going on, but I screamed and cried out in pain.
As they carried me out I looked down and my son was looking up at me in terror. He was watching his mom being carried away, screaming and crying, but I took all the strength left in me to tell Jason that I loved him and that I promised I would be back. I then came to the horrifying realization that I made a bold promise.
It quickly became a decision between life and limb since the sepsis started because a hospital borne pathogen got into my limb-salvage wound. On December 9, 2014 I had an above the knee amputation.
I did not know how to tell Jason that I lost my leg, so it was kept secret. On Christmas Day, he came to visit me. He noticed something was different so he pulled the blanket off of me and said, “mommy your sick leg is gone.” I froze, then responded, “doctors had to take it off because it was making me sicker.” Jason replied, “okay then. Let’s color.” It didn’t matter that his mother’s leg was gone, because his mother was still here.
Despite just having undergone my amputation, I still had to complete treatment. I struggled with being physically sick from chemo, emotionally wrecked from all the trauma, having to learn how to do things as a new amputee, and still being separated from my son.
I was finally declared to be in remission on May 14, 2015. My 5 year remission anniversary was on May 14, 2020, so I am cured!!!
I have had many ups and downs these last 5 years and life isn’t totally easy, per se. But these last 5 years have been the best years of my life. Mine and Jason’s little family grew from two to three, free from drama and abuse; instead with constant support and love from my fiancé Peter. He picks up the pieces when I physically or emotionally cannot, and most importantly, he loves and guides Jason as though he were his own blood. Jason and I are still healing, and Peter is helping us heal.
This experience has shown me what is really important in life, and that is happiness. Life is too short and too fragile to not do what makes you happy. I am humbled and grateful for everything I have now, because knocking on death’s door almost took everything from me. I purposely share my story because I don’t want people to need something catastrophic to happen to them, for them realize what truly matters in life. Happiness matters. And that’s why I can say these last 5 years have been the best of my life, because I finally put my happiness first.
Together, we can make a difference.
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Meet Abigail, an acute promyelocytic leukemia survivor with a magnetic personality.
Abigail began her cancer journey in September of 2016 at 14 years old. In the weeks leading up to her diagnosis, he exhibited symptoms of a sinus infection and hip pain. She came home from school with unexplained bruising on her legs and elbows and called her mom to pick her up early. Abigail’s mother, Jill attributed it to a sinus infection and took her to the doctor after finding an enormous bruise on her right hip. Abigail’s platelets were dangerously low and her white blood cell count was outside of the normal range so her doctor sent her to the emergency room. When they arrived at the emergency room, they met Dr. Julie Blatt who knew almost immediately that Abigail had acute promyelocytic leukemia. Abigail and her family were told that the leukemia had a very high cure rate but the treatment was very harsh.
Chemotherapy started immediately and diagnosis was confirmed with a bone marrow biopsy. The day after starting chemo, Abigail went into respiratory distress and spent four days in the PICU. Abigail spent a total of 34 days in the hospital and lost a lot of weight because she had no appetite. When she returned home, her appetite returned and she began outpatient treatment two weeks later. Despite eating, she still appeared very thin and pale. Abigail had infusions five days a week, four weeks at a time. During her treatment, she experienced hair loss, nausea, vomiting, fatigue, headaches and weakness. She had multiple CT scans and lumbar punctures to monitor her brain. In a routine eye examination, the optometrist discovered that she had swelling in the optic nerve, so for the remainder of chemotherapy was also under the watchful eye of the neuro-opthamologist.
Abigail was declared cancer free in February 2017 and she finished chemotherapy in May of 2017. Because of the cancer and chemo, she had developed some chronic medical conditions that make her feel awful. In spite of her suffering, she goes on with her life. She keeps up with her school work. She goes on outings with her sister and she enjoys spending time with her nephew.
When Abigail was young, she wanted to be a doctor. After finding out how long school would take, she decided that she wanted to become a nurse instead. She decided to become a pediatric oncology nurse and wants to study at UNC Chapel Hill. She also enjoys interior design and makeup.
Click here to watch the full interview on Justin’s “why.”
Justin Baldoni might be best known for his work on the CW’s hit, “Jane the Virgin” and Wayfarer Entertainment’s “Five Feet Apart,” but his most recent work, “CLOUDS” tells the story about an osteosarcoma warrior determined to live despite a terminal diagnosis.
Just seven years ago, Justin worked on SoulPancake’s popular docu-series, “My Last Days.” SoulPancake entertainment explores life’s big questions, celebrates humanity and champions creativity. Justin’s mission to help people become comfortable in the uncomfortable by telling stories like Claire’s in Five Feet Apart, or Zach’s in CLOUDS. In a note from the director in the rerelease of Laura Sobiech’s, “Fly a Little Higher” renamed “CLOUDS: a Memoir,” Justin talks about his “why.”
“When I met Zach, I was a single, struggling music video director, documentarian and failed actor. My house was in foreclosure, I had no money, and I was traveling the country telling the stories of amazing young people who were living with a terminal illness. I wanted to wake people up and help everyone come to terms with their mortality – to stop procrastinating and really live. But, really, in hindsight, I wanted to wake myself up. And Zach helped me do just that.”
ACCO spoke with Justin ahead of the CLOUDS release about why he became a filmmaker and the imprint that Zach and his family have had on his life. Click the graphic above to watch the full interview.
ACCO was lucky enough to speak with Laura Sobiech, mother of Zach Sobiech ahead of the CLOUDS movie release. Laura’s first book, “Fly a little Higher” has been updated and revised to coincide with the film release of CLOUDS and she kindly sent Blair Scroggs, Public Relations Coordinator a copy ahead of its release. In this interview, Laura talks more about her experience writing the book and starting the movie process with Justin Baldoni. She talks about meeting Fin Argus for the first time and even provides advice to parents of children diagnosed with cancer. Make sure to follow this series by reading Zach’s Gold Ribbon Hero story and on Friday, October 16, watch CLOUDS on Disney+.
The following is a transcription of an interview with Laura Sobiech, Zach Sobiech’s mother and author of both “Fly a Little Higher” and “CLOUDS: a memoir,” Blair Scroggs, Public Relations Coordinator at ACCO, and Ruth Hoffman, CEO of ACCO.
Blair Scroggs:
Thank you for taking time to talk with us and raising awareness for childhood cancer. We are so excited. One of the questions I had for you was you started writing things down. Obviously, you’ve written this entire book. You started writing things down because you didn’t want to forget them. What made you compile it into a book?
Laura Sobiech:
Yeah. That’s kind of a funny story. The only writing I’ve ever really done was just CaringBridge. Maybe made a couple journal entries, always had good intentions of doing that as far as just journaling in general, but never really consistently until CaringBridge. My two closest friends, Anne and Stephanie, were published authors, and Anne’s agent had been reading my CaringBridge as we were going through this whole thing. After Zach died, she asked Anne if I would consider writing a book because if I was interested she would be my agent. I skipped over this whole part of writing that most people have to go through. They usually start with a book, they have to find an agent, then that agent will pitch it to the publishing houses. I didn’t have to do any of that. My agent, Jackie, started pitching the idea without a book. Basically, we wrote up a one sheet of … I just in my mind plotted out how the book would go and then did chapter titles with a brief description of what it might look like, and the storyline. She started pitching that along with the video from My Last Days and prepared a video that’s out there that they can look at. And then, Thomas Nelson jumped at it. A month after Zach died, we got the book deal and they wanted me to write it in 12 weeks.
Blair Scroggs:
Wow. That’s so quick.
Laura Sobiech:
Yeah. It is. Thank you for affirming that. It turns out I work really well under a tight deadline and I was able to do it. I was so grateful that I had that to put it all into because it’s so easy to say, “I’m going to do that one day,” and those memories fade so fast. I was glad I was writing an article that was still really raw.
Blair Scroggs:
I can’t imagine writing this whole book in 12 weeks for a four-year battle. I’m telling you, I read this whole book cover to cover this weekend and I actually was on a podcast last week. I sent a text to the girl from the podcast and I was like, “You have to go get this book right now. It’s so good.” I said, “You have to read it. You have to read it. We have to talk about it.” She started listening to the book because she bought the audiobook and she sends me a message 10 minutes in and she says, “I’m on the first page and I’m already in tears.” I was like, “Just wait.” I was like, “This book has all the feels.” I said, “You’re going to laugh, you’re going to cry, you’re going to just want to throw the book across the room because it’s just so good.”
I can only imagine what this movie is going to be like. Justin is very talented as a director and I know that Ruth and I both previewed “My Last Days” and she sent it to me and I said, “I’m already watching it.” I was just so excited. How are you doing? How is everything going? I’m sure that probably a lot of media have reached out to you, especially with the release of the movie coming out. How’s everything going? I know you guys were so against publicity when “Clouds” first started to gain traction. How’s it going?
Laura Sobiech:
It’s going really well. We’re really excited. The whole movie thing was one of these things that was just such an unknown for me. Even trying to imagine … The way I prepare for hard things is by living in that space for a while, so I would do that when Zach was dying. Every night, I would just think about, “Okay. What’s it going to be like? How’s that going to feel?” I would just put it on and wear it for a while. The movie stuff was a different piece. How do you know how you’re going to feel when there’s a movie about you out there? That’s just weird, and not a whole lot that’s relatable in life. We’ve been pleasantly surprised.
The trailer’s out there and now the people are responding to that in really positive ways, so that’s exciting for us. We’re just excited. Really, at the end of the day what matters is that we are true to our original mission which was to bring some light into this dark area of childhood cancer and specifically osteosarcoma. If we can do that and if we can inspire people to give, we saw that when it went viral and we are hoping to do that again and raise a bunch of money. Yes. We’re getting requests for interviews, Disney is doing an amazing job of publicity so I’ll be doing a press junket around the movie. I’m excited because they’re helping us promote the cause too. That’s cool. I couldn’t have landed in a better place. I’m just thrilled with how this all is right where it’s supposed to be.
Ruth Hoffman:
Did they do an accurate accounting of what happened? So many movies deviate from how you really felt or what really happened. Were they pretty accurate and you’re pleased with that?
Laura Sobiech:
Yeah. We probably had a lot more access to the process than most families do just because of our relationship with Justin.
Ruth Hoffman:
Okay.
Laura Sobiech:
That said, I was pretty hands-off with it. Writing a movie is a different beast than a book. You have an hour and a half to tell a good story, and it’s easy to go down those side stories. I didn’t really want to be part of that. I would say it’s about 80% true. There is some of it that’s just like fiction. Things just didn’t happen that way, but I would say the essence of who Zach is very present. Fin Argus did an amazing job playing him.
Blair Scroggs:
And he looks just like him. It’s insane.
Laura Sobiech:
I was up there for filming. I was there for a week by myself for the first week of filming, and then for the end a couple of the scenes are family and friends. There were 70 of us that went out there and we were all extras. That was fun. The first time I saw Fin dressed in a bald cap on Zach’s crutches, Zach’s clothes, his crutches, the stuff from his bedroom, Fin came in dressed like Zach wearing his clothes on his crutches, and it was just like nothing I’ve ever emotionally felt before. It was like Zach was walking in the room and I was like, “Oh, that’s what that felt like to have him in this space again.” I forgot that’s how it felt. There’s an element of I love this, and then I miss him all over again. I was like, “I miss Zach.” I cried in front of a complete stranger for 10 minutes, which I’ve never done in my whole life.
Blair Scroggs:
I think I remember reading something in the book where you said that you actually tried to run your fingers through his hair and touched his face because he was just so real.
Laura Sobiech:
I was and he was so gracious, literally. I’m sitting there touching him and touching his hair. He’s even got a mole on his right cheek right where Zach did. I’m like, “I am so sorry I am treating you like an object and I don’t mean to, but it’s just so remarkable to have … He was at our house when I was doing this. He said, “It’s okay.” He’s an amazing actor. He’s so young. This was his first big, major film, and the first time he’s playing a real person which is a big deal. That’s hard.
Blair Scroggs:
That’s a big deal, for sure.
Laura Sobiech:
He did it so beautifully. He did such a phenomenal job at capturing the spirit of Zach. There are scenes in the movie where he’s sitting on the couch with Summer who played Grace, Zach’s youngest sister. She wants the remote from the TV and he’s like, “No, no, no” and it’s exactly those two fighting on the couch. They both just nailed it. There’s this scene in the trailer where … Have you guys seen the trailer?
Blair Scroggs:
Yeah.
Ruth Hoffman:
We did, yeah.
Laura Sobiech:
Okay. There’s the scene where he’s in the bathroom and he does this kind of dance. Zach would do that all the time. He nailed it. It was really fun to see that. There are definitely a couple of scenes … There’s one in particular where Zach and Amy are together and they’re talking about their future and Zach gets upset because he doesn’t have a future and he feels badly about pulling Amy into this life of his. He runs out of the house and he’s upset and he gets in the car and he tears off and she’s begging him to stay. Zach would’ve not done that in that way, but I know he was feeling those emotions. He just didn’t act like that. In a movie you have to show it.
Ruth Hoffman:
Yeah. You have to have the drama.
Laura Sobiech:
Yeah. It was an experience.
Blair Scroggs:
That is so cool. I’m so excited. I can’t wait for it to come out. When they finally released the trailer I said, “I know what I’m doing on October the 16th. I’m ready to go.” One of the next questions I would like to ask is you said at the beginning of the book that you had asked God to make his life about something big, and coincidentally enough Zach did the same thing. He asked for something big. Did you ever think that a movie about a kid with osteosarcoma would come out and raise awareness? Did you ever think that that would happen?
Laura Sobiech:
No. I kind of joke about when I would have said that. I had any inkling that this would’ve happened I would’ve been like, “It’s okay. We’re good.” My idea of it was just so much smaller. It just was not this big. I’m so grateful that for whatever reason God answered our prayer this way because even though there’s sacrifice that comes with it, we’re putting ourselves out there and so far it’s been pretty easy, but I know this is a new way of putting ourselves out there so we’re setting ourselves up for some possibly critical things. You’re just giving up parts of your life, which that’s hard.
Blair Scroggs:
Right.
Laura Sobiech:
All the people come in and take over the narrative and you lose that, and that’s part of the sacrifice too, but for whatever reason our family has been able to handle this. We’ve been given this opportunity, and now we would be the voice for people who don’t ever get this voice. I am thrilled that we’re able to highlight this disease, raise awareness not just about osteosarcoma, but about child cancer in general.
Blair Scroggs:
Exactly.
Laura Sobiech:
We didn’t know kids got cancer just because… no reason, until Zach got it. It’s something that unfortunately as it is with most diseases the people who get them and their families are the ones that have to bang the pots and pans together and say, “Listen to us,” so that’s what we’re doing. We’re just grateful that we’ve been able to have such an amazing platform to do it. We don’t take for granted the fact that we have a kid who had cancer who died, and now we get to see this, this huge legacy. I work with families all the time who lose a kid to cancer and they don’t get this. We don’t take that for granted. We know that’s a big deal.
Blair Scroggs:
It’s so important to raise awareness for childhood cancer. Before I started working for ACCO, the only type of cancer I knew about with kids is obviously leukemia. I feel like that’s the poster child for cancer with kids is leukemia I think probably because I saw “A Walk To Remember.” That’s really what I had associated it with, and that was basically it. It’s so good. I’ve been working for ACCO for about two years collectively. Every day that’s just my main mission is to raise awareness for childhood cancer. My first year that I started working for ACCO I wrote a story about a kid named Grace. She is a brain tumor survivor and appeared at the State of the Union last year, which was so amazing. I just feel like little things just keep moving that [childhood cancer awareness] forward and people are noticing about childhood cancer. It’s just so good that this is coming out. I was so excited.
Laura Sobiech:
Yeah. I was too. It’s so funny because another movie that’s on Disney+ is “The Fault in Our Stars” which is also about a kid who dies from osteosarcoma.
Blair Scroggs:
I can’t watch that. I watched it one time and that was it.
Laura Sobiech:
It’s funny because that was Zach’s favorite movie. He was really reading the book when we were on our trip to Lourdes. It’s really interesting that now it’s coming full circle for us that we’re going to be joining that space too. We’re excited about it.
Blair Scroggs:
That’s just so exciting. You mentioned that you work with kids and their families. What are you doing now? I guess you’re not working at the dentist’s office or as an EMT anymore.
Laura Sobiech:
Not anymore. I just retired from being a firefighter EMT two years ago. After Zach died, I of course went right into writing the book and then there was the whole year of promoting the book. And then, I joined Children’s Cancer Research Fund, and I think our organizations do very similar work. I work there in Minneapolis as a community outreach coordinator, which for us means I reach out to families and ask them to share stories.
Blair Scroggs:
That’s wonderful. That’s what I do.
Laura Sobiech:
Yeah. That’s what I do. It was just the perfect fit because especially in Minnesota and people know our story for the most past and I can just go right in with them and they know I get it, which is nice. Lately, I’ve just been working on all the movie Clouds stuff.
Blair Scroggs:
That’s awesome. Could you give me an update on everybody else, all the kids, your husband, everybody?
Laura Sobiech:
Sure. Rob still works at the same company that he’s worked at forever. Tom Everett Scott played him, who I love. He doesn’t totally nail Rob. He does this wave what he would never do. We’re doing our thing. Alli is now married and she has two little ones. She married Collin, I think 11 days after Zach died. They have Finnegan and Frankie who are five and two and the most adorable creatures in the world. Sam got a degree in biochem and he works for an organization that they contract for 3M. He lives in Minneapolis and he does work that way. Grace is in her third year of college. She’s going for graphic design.
Blair Scroggs:
That’s wonderful.
Laura Sobiech:
Yeah.
Blair Scroggs:
How is Mitch? What did he end up doing? I feel like he had to do something “sciency.” I saw the photo in the book and I’m like, “Okay. What’s he doing?” I figured I’d ask.
Laura Sobiech:
Actually, he works at the University of Minnesota and he graduated with a degree in biology. He works in the same lab where the osteosarcoma research is being done that we fund. He just applied for medical school and he wants to go on to be a pediatric oncologist and do research on osteosarcoma.
Blair Scroggs:
I can see him doing that for sure. The way that you spoke about how he and Zach used to have their scientific conversations and banter back and forth, that just sounds exactly like what he would be doing.
Laura Sobiech:
Yeah.
Blair Scroggs:
How about Amy?
Laura Sobiech:
Amy … She went on to become a news anchor in Duluth. She just finished up with that job and actually moved to Minneapolis working for a PR firm.
Blair Scroggs:
And Sammy?
Laura Sobiech:
Sammy lives in New York, so she’s got an apartment in Brooklyn and she works for … I can never remember what publishing house she works for, but she is a publicist for children’s authors for them, for their books.
Blair Scroggs:
Do you get to see everybody still? Do you get to see all the kids? I’m sure you see the kids, but do you get to see Amy and Sammy when they’re in town?
Laura Sobiech:
Yeah. Absolutely. If they’re all in town together, they always make an effort to come over here and we’ll just hang out. They’re actually all in town now. Sammy moved back because of COVID shutting down her building, so she’s been home since July. I’ve gotten to see her a few times. They’re planning on doing some online streaming concerts that would be an incentive for standing up for Zach’s movement, so we got a fundraising page for that.
Blair Scroggs:
That’s so cool.
Laura Sobiech:
They’re going to do a little concert for that with Fin Argus. They’ll be practicing here. They always come over here to practice for me.
Blair Scroggs:
Do you guys still live in the same house?
Laura Sobiech:
Yeah.
Blair Scroggs:
That’s so cool. Zach seemed really positive every day. Where do you think that positivity came from? Was he ever down? I remember there was one part in the book.
Laura Sobiech:
Honestly, I think the kid was born with it. He was the extrovert in the family. Thanks Zach for leaving us with all this. He just wanted to have fun. He was goofy and he like to have fun, but there was a very contemplative side to him too. He was very thoughtful. He was the peacemaker in the family too. He was the one that everybody connected with, so he was kind of the hub, which was one reason that made it so scary to lose him because as a mom I was like, “How are we going to be living without this kid?” We’ve managed. I don’t know. I think he had a very deep spiritual life that he lived quietly. He wasn’t super vocal about it. In the “My Last Days” documentary he said “it’s all about just making people happy,” and I think for him what that meant was he found great joy in connecting with people. That brought him joy. We just wanted to say “How do you bring joy into your own life when you make people happy?” He was always like that even from a little baby. He wanted to engage with people. I think there was part of him that that was just part of who he was. I also think that as a young man he’s got to deal with the big things he had to deal with. You have to rise to it. You either can be decimated by it or you rise to it. I think that’s why we do the work that we do is we get to know these kids and they rise through it. That’s what’s so inspiring about them.
Blair Scroggs:
I agree. I agree 100%.
Laura Sobiech:
Yeah.
Ruth Hoffman:
Most moms will say that their cancer kid was that special kid, that kid in the family that was compassionate, that was strong, that had this inner strength. I know with my daughter it was the same thing. She was the one kid that handled it graciously. It’s always interesting. They’re old souls sometimes.
Laura Sobiech:
They really are, and they learn it. They learn it. They have to learn how to find joy in it, and I was always impressed with how he did that, especially I think after he died and I was able to just look back, because when you’re in it, you’re in it. You’ll just plug along and you’re like, “Okay. Good. He’s okay. Let’s move on to the next thing.”
Ruth Hoffman:
Yeah.
Laura Sobiech:
There was just something special about him. You can have them pushing that awful port in. Like, “Gross!” No complaints, just rolling with it, joking with the nurses.
Ruth Hoffman:
It does hurt. We have port so it doesn’t hurt. It’s like… it hurts.
Laura Sobiech:
And it’s gross!
Ruth Hoffman:
It doesn’t come easy.
Laura Sobiech:
No. None of it’s easy. Not any part of it is.
Ruth Hoffman:
Yeah.
Laura Sobiech:
Yet they do it.
Blair Scroggs:
I think what I loved about that too with the whole reading the book, the last conversation that you guys have, you guys are in the doctor’s office for the last visit. You guys are walking out of the hospital or the treatment at the clinic, and he says to you, “I guess I don’t have to go to school anymore. I don’t have to do any more homework.” He just had that, “Okay. Let’s just roll with the punches.” I really appreciated that, because I think you could either go one or two ways like you’re saying. You could fall apart or you could just keep going, and that’s what he was doing. It cracked me up in the book.
Laura Sobiech:
I was so grateful that he allowed us to do that. There was the part where, “I guess I don’t have to do homework anymore,” and so we just busted up laughing.
Blair Scroggs:
Exactly.
Laura Sobiech:
And then it was like, “Let’s have a party.”
Blair Scroggs:
Yeah.
Ruth Hoffman:
A no homework party!
Laura Sobiech:
Yeah. Everything in one party. This would be your wedding, your prom, your all the things party.
Blair Scroggs:
The party seemed like it was amazing.
Laura Sobiech:
It was so fun. It was the place to be. It really was. They all were. All the parties, all the big events were just so full of joy because of Zach, but also because of all the people that came too. Being a part of a community that loves you and cares for you is just there was nothing else that can replace that. I just remembered there were whole stretches of time where I couldn’t pray. I just didn’t have it in me, and to know I had a whole church full of people who were doing that for me. I just remember thinking, “Thank you because I can’t do it right now.”
Blair Scroggs:
Right.
Ruth Hoffman:
I have a question on that one that wasn’t written down. Were you able to pray since then?
Laura Sobiech:
Yes. I have been. I love my faith. I’ve actually been able to go deeper in prayer than I have been. I don’t think I would’ve been able to had I not gone through that. I think part of it is that it’s not always natural. Sometimes it’s full of distraction, sometimes my mind’s going all over the place, sometimes it feels completely empty. I definitely went through times like that, but I made the decision that I was going to bring myself to that space even if I was distracted or I didn’t feel like it and I was going to open myself up to God. I just kept doing it and doing it, and doing it, and then I finally go to a place where now I can spend at least an hour, sometimes two every morning just in quiet meditation. Again, messy. Sometimes my mind’s shooting all over the place so it doesn’t look like what some people think it should look like. This is part of how our story unfolded. I learned to trust God through it even through the loss through detaching what I wanted him to live. I wanted the future that I had in my head, but learning and trusting that there was something bigger that I couldn’t see going on. Nobody can tell you, “There’s a big picture.” That sucks to ever do that to people, but I was able to in my own heart be like, “I have to see there is something different going on here than I can see,” and then through that and then being able to see. Look what happened. That’s what I mean. I know not everybody gets this, not everybody gets this affirmation or these miracles, the way things line up.
Ruth Hoffman:
Yeah.
Laura Sobiech:
I have for whatever reason that’s completely outside of myself in my own power been granted that. It’s just a huge journey for me to be able to learn to trust God. I don’t think I would’ve been able to. It’s hard. It sucks, it’s hard, it’s miserable, but God has come down into it with me and I’ve seen him here over and over.
Blair Scroggs:
Do you have any advice for parents who are either newly diagnosed going through any kind of childhood cancer or specifically osteosarcoma? Do you have any advice for parents going through it in the thick of it?
Laura Sobiech:
Yeah. That is a hard one because it’s such a different place at the beginning that is to have hindsight. Because it’s so overwhelming, I think probably just if you can tackle it with more than one person so if you’re married, have a husband and the team there when you’re going through appointments, especially at the beginning because there’s so much information. You’re having to make decisions about crazy things like fertility with your kids, all these things coming at you. It’s like a fire hose.
If you can have both people together, which seems a stupid thing to advise, but it is helpful. Be patient with each other because you’re entering into not only all this crazy stuff, this whole new world. Literally, you’re entering into a new space. Most people have never been in a hospital like that before. You’re meeting all new people who are going to be the primary people in your life for the next several years, you’re learning a new language, most people don’t know medical speak when they’re getting a diagnosis like this, so all these new things. Ask questions. Don’t be afraid to push back and ask questions if you’ve got them. Be patient with the medical staff because they’re in it with you, but they’ve also got other people to deal with. Just be patient and have a kindness. I’ve seen some parents go in who are so freaked out that they just are swinging at anybody that comes at them. I just feel like that’s sad because it starts a relationship often in such a bad place. Try to be patient with each other even though it’s scary. Take help. When people offer help, hopefully people will offer help, accept it. Be specific about the things that you need. A lot of times people don’t know what to do so they’re going to be very general and say, “If there’s anything I can do.” “Yes. Can you bring us dinner every Friday night? We’re finding it difficult to pay for gas. This is all for the traveling that we’re doing. Can you get people to give us gas cards or something?” Just lower that whole, “I can do this on my own,” thing. Make that go away. It’s okay to accept help. One of the reasons is because there are people who really want to take care of you. Let them into this. It’s okay to let people into this with you. Give yourself space. I was saying earlier, one of the things that I did for my own self-care especially that last year of Zach’s life is every night I had a playlist that listed “Sad Songs” and I would pop my earbuds in and I would just sit in my favorite rocking chair and I would visualize what it was going to look like to watch Zach die. I would go step by step through that. I would picture what it was going to be like to go to his funeral. I didn’t want to just put myself in that place. I cried every night for an hour and then I would put the earbuds away and I would go to bed and then I wouldn’t think about it until the next hour, the next night. It helped me stay sane to allow myself to go there a little bit, but then pull it back in. Families learn to live in this space here, in this present moment, and that’s one of the things that these families learn pretty quickly is joy only lives in the present and you can let it be robbed by the past and the future. You have to be intentional about living here in the present.
Blair Scroggs:
That was his whole message through the whole book. That was your message. Live like you’re dying. It was just so evident. I smiled when you said his funeral because I thought about the bagpipes.
Laura Sobiech:
His funeral is actually on YouTube.
Blair Scroggs:
Is it?
Laura Sobiech:
Yeah.
Blair Scroggs:
I have to find it now.
Laura Sobiech:
Yeah. It’s in two or three parts. It was a beautiful funeral. There’s bagpipes at the end, and if you do look it up it’s funny because as soon as you hear the bagpipes fire up you hear a couple of people giggle. It’s his group of friends because they knew how ridiculous he was. Of course, he’s going to have bagpipes.
Blair Scroggs:
That’s so funny. Yeah. I cracked up when he said that he wanted bagpipes. I feel like I know him now reading this book and I’m like, “This is exactly what he would do.” My last question is if he were alive, what do you see Zach doing now? Where would he be? Do you ever or often think about that?
Laura Sobiech:
The times that I really think about it, I don’t think about it a whole lot. When we go to Christmas Eve Mass, that time was just precious to our family. It’s like our favorite night of the year. When we go now, it’s hard because those kinds of events it’s so obvious he’s gone. You can really feel that. Always feels a little clunky. This is always off. There’s that. But then, it’s also a time of year when all the kids come home. That’s the time of year when I see not his closest friends but some of his friends from grade school coming in and they have beards, they’re engaged, they’ve graduated from college. That really marks time for me, and that’s when I really am like, “I wonder what Zach could look like now. I wonder what he’d be doing.”
I think what he’d be doing, he had such a heart for young kids. Kids loved him and he loved kids. He got kids. He enjoyed being the older kid that could bring joy to them, so he really dug that. I think he’d either be into teaching or he wanted to be a nurse. He wanted to get into the U of M and he applied and they accepted. I think he intended to go into nursing. I don’t know he had it in him to be a doctor to be honest. He was kind of lazy, not that nurses are lazy, but he wanted to serve kids and I could see him being in of those professions.
Blair Scroggs:
You didn’t see him being a singer?
Laura Sobiech:
Yeah, but I don’t think that it would’ve been his primary – I think it would’ve been a hobby.
Blair Scroggs:
Yeah. For a day.
Laura Sobiech:
Yeah. Right. I think that he still tapped into it, but I don’t think it would’ve been a profession for him.
Blair Scroggs:
Well, I really appreciate you taking the time to talk with us today. We are just so excited about this whole thing.
Laura Sobiech:
I’m thrilled! Thank you so much for sharing. I’m excited for what we’re going to be able to do for childhood cancer.
Blair Scroggs:
We’re excited too. I’m thrilled at it. Thank you again for the book. It’s awesome. I really appreciate it.
Meet Zach, a forever 18 year old osteosarcoma warrior. Zach was a compassionate and loving soul with a passion for living life to the fullest.
In 2009, Zach went on a run with his sister after a lazy summer. When he came home, he was complaining of a sore hip. His mother, Laura said if it persisted, they’d go to the doctor. After a few weeks, the pain was still there so Zach and his mom went to the doctor. The doctor had an x-ray performed, ruled out anything major and sent him home. After the pain got worse, Laura decided to take him back to the doctor where an MRI was ordered. Zach’s parents, Laura and Rob both accompanied him to the MRI where they found out that he had a tumor. The doctor wasn’t completely sure what type of tumor and said it could be one of three possibilities – lymphoma, fibrous dysplasia or osteosarcoma. “Osteosarcoma is the worst of the three,” Rob said, in the book, “Clouds, a memoir.”
Zach was officially diagnosed after a biopsy was performed. The doctor confirmed Laura and Rob’s worst fears, osteosarcoma. “The words hit me with the percussion of a bomb; I couldn’t breathe and my ears rang. As much as I had prepared myself to hear those words, I wasn’t ready for their impact” remembers Laura.
courtesy of the Sobiech family
Treatment started almost immediately and Zach went through chemotherapy, surgeries and radiation. In May 2010, his hip joint was removed and the tumor had been dissected. At that point, they found that the tumor was 100% necrotic and that the cancer had shrunk. The family thought they were in the clear until more cancer had relapsed. When the cancer spread to his lungs he was faced with a decision – get a surgery that would leave him without a leg or live out his remaining time with family and enjoy life. Zach decided not to get the surgery and lived his remaining time like a teenager, going to prom and visiting with friends and family.
courtesy of Children’s Cancer Research Fund
Zach was extremely close to his sister, Grace and wanted to give her a personalized pair of Converse shoes to remember her by. He thought “is this enough,” and when he brought the idea to his mom, she encouraged him to write letters to say goodbye. Instead, Zach wrote songs. One song, “Clouds” became a massive hit and the day of his funeral, “Clouds” hit number one on iTunes. The music video surpassed 13 million views on YouTube and with the release of the namesake movie, “Clouds” will be reignited onto the charts again.
During Zach’s journey, he remained incredibly positive and hopeful that his diagnosis was for something big. He told his mom that if he was going to die, he wanted to leave the world a little better than what it was. Zach was extremely determined and when he was being confirmed in his church, he walked up with a backpack of fluids. When someone in the church questioned his backpack, he told them simply “it is keeping me alive.” He made it his mission to keep a smile on the faces of everyone he met and his energy was felt in every room he walked into. “Zach was the hub, the touchstone in the family whom everyone could connect with” from the book, “Clouds, a memoir.” He was determined to get to prom with his girlfriend Amy and to make the night special for her. When Zach received the news that the treatments were no longer working instead of breaking down, he asked for a party. Zach gained his wings in May of 2013 and his legacy lives on with “Clouds.”
In 2012, Zach’s mom established a fund called the “Zach Sobiech Osteosarcoma Fund” which helps in osteosarcoma research. To date, this fund has raised more than $2 million dollars. Zach wanted to be “remembered as the kid who went down fighting and didn’t really lose.”
Watch our social media this week as we are interviewing his mom, Laura Sobiech as she gives advice to the childhood cancer community. On Friday, October 16, watch Zach’s story in the film release, “Clouds” on Disney+.
Learn more about the types of sarcomas and read more stories here during our Sarcoma Awareness Month feature.
Meet Gage, an outside-loving four year old acute lymphoblastic leukemia survivor!
At just two years old, Gage was diagnosed with acute lymphoblastic leukemia (ALL). When Gage started bruising and displayed signs of petechiae, his parents knew something was wrong. Petechiae is the appearance of tiny purple, red or brown spots on the skin. Gage’s parents were in disbelief and felt numb when they got the diagnosis.
Treatment started immediately including 3 and a half years of chemotherapy, port placement surgery, bone marrow biopsy and 18 spinal taps. He has had several side effects of all of the drugs but continues to keep a smile on his face.
“He probably won’t remember much of his journey but it will forever be with me,” remembers Gage’s mother, Brandy. Gage has faced cancer head on and it’s been a scary journey but her remains upbeat and hasn’t let his battle get him down.
Diffuse intrinsic pontine glioma, or DIPG, is a type of brain tumor that occurs in the pons, a part of the brainstem that controls many basic functions like breathing, sleeping, swallowing and regulating the heart rate. This area of the brain is also a pathway where many important signals pass to and from the brain to the rest of the body.
DIPG is a type of glioma. Gliomas are brain tumors that arise from glial cells, the cells that protect and support the neurons in the brain.
DIPG brain tumors are most common in children ages 7 to 9, but it can occur at any age.
What Are the Symptoms of DIPG Brain Tumors?
DIPG brain tumors are usually fast growing, and the symptoms can arise suddenly. They can include:
Problems with speaking
Problems with walking or balance, especially on one side of the body
Problems with chewing and swallowing
Vision problems
Drooping of the eyelid or face, especially on one side
Nausea and vomiting
Persistent headaches, especially in the morning
How Are DIPG Brain Tumors Treated?
There is no known cure for DIPG, and treatment options for DIPG brain tumors are very limited. Because of the tumor’s location in the brain stem, where it’s surrounded by and mixed with healthy tissue that’s critical for survival, it is not possible to remove a DIPG brain tumor with surgery. Researchers have tried many chemotherapies, or drugs, to treat DIPG, but none have been successful. Radiation therapy is the only treatment that is proven to shrink the tumor, but it is still not a cure.
The recommended treatment for most children with DIPG is a combination of radiation and anti-inflammatory steroids, which can help manage some of the symptoms of the tumor by reducing the swelling. Unfortunately, because of the aggressive nature of the tumor and the lack of treatment options, most children do not survive more than two years from diagnosis.
Some families may choose to enroll their child in a clinical trial for DIPG. Clinical trials are an important phase of childhood cancer research, and they can be a way for a child to try a new treatment that shows promise but hasn’t been proven effective yet. Your child’s care team can help you understand your child’s treatment options, including whether they are eligible for a clinical trial.
The book Understanding the Journey: A Parent’s Guide to DIPG provides an in-depth look at DIPG treatment, research and what to expect from a DIPG diagnosis, as well as parent stories to provide personal insight into the DIPG journey. If you’re the parent of a child with DIPG, get in touch and we’ll provide a copy of this book and other resources to help you navigate your experience, free of charge.
David Jr.’s Story: Defying the Odds
In April 2018, David Jr.’s parents knew there was something wrong with their 6-year-old son, but a brain tumor was the furthest thing from their mind. Yet they would soon learn that David Jr. had DIPG, one of the deadliest forms of childhood cancer.
Following David Jr.’s lead, the family dedicated their time to making memories together and making the most of every day. Meanwhile, David Jr. underwent 30 days of radiation to his brain stem. When it was over, they received great news: his tumor had shrunk significantly!
Now, two and a half years later, David Jr. is undergoing his fourth course of radiation. Over the course of his treatment, he has never failed to surprise his doctors, and his family is hopeful this time will be no different.
Since David Jr.’s DIPG journey began, he went from walking normally to using a walker and then a wheelchair. He lost the use of his right hand, and at times he has had trouble swallowing, speaking and breathing. But David Jr. always remains positive. “The one thing the disease hasn’t taken is his spirit,” his mom, Elizabeth, said. “He lives to make every day the best day ever.”
The American Childhood Cancer Organization provides resources and support to families of children with DIPG and other childhood cancers. Please donate so we can continue to provide our services free of charge.
