“Your child has cancer.”
Every two minutes, a parent somewhere in the world hears these agonizing words.
Pediatric cancer is the leading cause of death by disease for children past infancy in the United States. Yet only four percent of federal funding for cancer research is dedicated to childhood cancers. And the current presidential administration has proposed cutting $1 billion from the National Cancer Institute’s budget.
In honor of Childhood Cancer Awareness Month, we reached out to the families in the HuffPost Parents Facebook community whose lives have been touched by pediatric cancer and asked them to share their children’s stories.
Continue scrolling to see 55 photos of young cancer fighters, read their stories of strength and courage and understand why kids battling pediatric cancer deserve #MoreThan4.
"Daisy was diagnosed at 9 months old with neuroblastoma. She had four rounds of chemotherapy, multiple surgeries and nasty infections! She's now 2 years old and currently in remission!"
"Emmitt was diagnosed at 14 months with stage four high risk neuroblastoma. He relapsed in his brain December 2015 and recently just finished treatment six months ago. He endured a long two years of pain and treatment that no kid should ever have to go through, but he conquered it and is an amazing 4-year-old who is living his life to the fullest each day."
"Jessen was diagnosed with stage four high risk neuroblastoma. He had six rounds of chemotherapy, five surgeries, a stem cell transplant, radiation, and antibody treatments. He stayed a happy kid through it all, and he is so amazing. He is now three years post-treatment but still has to go for follow-up scans and appointments twice a year because of the high rate of relapse."
"My son, Benjamin, was diagnosed with leukemia on Dec. 31, 2009. He endured over three years of treatment, which saved his life, but damaged his bladder, caused him emotional trauma, and resulted in lower IQ. We are grateful beyond words for his life, and saddened by the years of hardship and physical cost to him. We need to do better, Ben is one of the lucky ones, he survived."
"My sweet girl Ellie. Diagnosed at 4 months old with a brain tumor. 28 rounds of chemo, 42 days of Radiation, and 17 surgeries. She passed away at just 4 years old only seven months ago."
"Our son, Mason, was diagnosed with acute lymphoblastic leukemia at the age of 2. Throughout his treatment he always kept a smile on his face and worried about how other people were feeling. Children don't show shame in being sick nor do they stop living. They fight, play, cry, laugh and continue being children. He is our hero and happy to say he completed treatment on Dec. 27."
"Izaiah, age 7, was diagnosed Feb 14, 2017 at age 6 with high risk acute lymphoblastic leukemia, Philadelphia-Like and CRLF2. He was flown three hours away to Seattle Children's Hospital. He's currently in remission since March 2017. He's still undergoing treatments of chemotherapy as we speak. Hope to be able to go home in end of September or beginning of October and return once a month for the next three years for more chemo and doctor visits. He has 30 percent chance of relapse but has done amazing through all of this. We pray he continues to keep being a warrior that he is."
"Our sweet Joseph was diagnosed with acute myeloid leukemia at age 11. Eighteen months of emotional rollercoaster ensued as we did chemo, non-stop inpatient stays, remission, Make-A-Wish, relapse, bone marrow transplant (which involved intense chemo and full body radiation and conversations about what he wanted to be done if things went poorly), fungal infections, bacterial infections and ultimately a virus that took root in his lungs and would not let go. We turned the machines off after four weeks being on it, just after Christmas, Jan. 10, 2007. He was 13 when he died. I have since gone on to become a nurse, hoping to return to the world some of the good it lost when Joseph died. I miss him every day and try to honor him every day in some small way. I kept/keep a grief blog called After His Death. It helps. He is happy and peaceful in this picture simply because he had high enough blood count to be allowed fresh fruit. Little things came to mean a lot."
"I'm going to share the side of cancer you won't see in St Jude commercials. This is Joe, our little warrior. He was diagnosed with stage IV neuroblastoma in June 2015. Here, he's in the midst of his first stem cell transplant. He's so swollen he can't close his mouth, bleeding from severe mucositis, and sleeping 22 hours of the day so his body could heal. This is one of the only photos I took of him during that time. The photos I did not take, those of his skin burned from the inside out, so delicate that the tape you see holding the tube into his nose left gaping wounds when they needed to be changed, those are the images that will be burned into my head for ever. Our children deserve SO MUCH better than this."
"My beautiful daughter Becky was diagnosed in July 2011 with high grade glioma (brain tumor on the brain stem). She had six weeks of radiotherapy and three months of chemotherapy, but sadly none of it worked and because of it been on the brain stem it could never be operated on. On 20th January 2012 my world was ripped apart when my princess fell asleep forever, she was only 7 years old with her full life ahead of her. We are all missing her so much. The pain never goes away."
"Declan David Fish was diagnosed with a rare brain tumor the size of a softball on May 23 of this year. He spent his second birthday in the hospital and is still undergoing chemotherapy treatment through the end of this year. Cancer has changed our lives forever. We will never take another day for granted or skip past the opportunities to support research. These kids and families endure so much pain and sickness that you can't know until you are in it. I ache for my son and all of the other kids daily."
"My son, Pierce, was diagnosed with a rare subtype of acute myeloid leukemia in April. At the time, our daughter Sierra was 4, and our daughter Harper was 4 and a half weeks. Cancer forces you and your family to adapt, bend, and challenge beyond comprehension. Pierce had two rounds of intense chemotherapy followed by a bone marrow transplant. His donor, his angel, is from France; there was no match for him in the U.S. Since one in 420 people is registered on BeTheMatch (the U.S. Bone Marrow Registry), I am proud to say that our family has registered over 650 since Pierce was diagnosed. Pierce walked out of Children's Hospital Los Angeles (CHLA) cancer free this past Tuesday. Since April 7, his journey included 115 days in-patient, going under 14 times, 31 platelet transfusions, and 15 blood transfusions. As one of the families who we be-friended on the oncology ward of CHLAl: You Bloom where You're Planted."
"Our daughter was diagnosed with leukemia at 2.5 years old. She has been a super warrior throughout the entire treatment time. She ended treatment a week after her fifth birthday on May 28, 2016. Reese never complained through the hospital stay, chemo, transfusions, or medicine. Despite everything, she was happy being a kid. This photo was taken on the day of her last chemo."
"Gavin was 12 years old when diagnosed with pre-B ALL on May 5, 2015, completely turning our lives upside down. Our new normal, while still in treatment for nearly two and a half years, is unplanned hospital stays, numerous planned visits with so many specialists and untold anxiety just to get through each day. Our other new normal is grace, love, acceptance and peace as we have had an army stand behind us every day of this journey... it has been hard, but it has not beaten us. This picture was taken during his last inpatient visit that landed him in the PICU for three days."
"This sweet boy is our Dustin-credible.. He is a true superhero! Dustin is nonverbal, and lives with autism. When he suddenly quit walking back in Feb 2015, he lacked the ability to tell us what was wrong. A trip to our local ER turned into a four hour drive across state as we headed to Seattle Children's Hospital. Little did we know, Dustin would never return home again.
Dustin has been undergoing chemotherapy for over 30 months and still has a ways to go before his treatment is complete. Through out it all, Dustin has fought with bravery and courage. I couldn't be more proud of him and feel so blessed to be his Mom!! This picture was taken during a harsh point in his treatment. He was rocking an adorable bald head and had just begun walking again after a couple of months off of his feet. His shirt says it all. Losing is not an option."
"September is Childhood Cancer Awareness Month. However, since losing our daughter Kelsey at the age of 13 to brain cancer, every month, in fact every second of every day is Childhood Cancer Awareness for us. Kelsey was the baby of the family and we all protected her fiercely, however, we could not protect her against cancer. What we could do is help Kelsey fight, we kept her smiling, kept her happy, stayed close as a family through her three brain surgeries (which paralyzed the left side of her body); 31 radiation treatments; six months of intense chemotherapy treatment; five rounds of Cyberknife Radiation; countless blood/platelet transfusions and over 600 needlepokes to her body. While enduring horrible treatments, Kelsey founded Team Kelsey 'to help other children battling cancer.' To this day we host Team Kelsey fundraising events and have raised over $154,000 for childhood cancer research and the Ronald McDonald House. Our family continues to raise childhood cancer awareness through Team Kelsey and share Kelsey’s amazing brilliance, spirit and her legacy."
"My son Hovakah was diagnosed Nov. 2016 with acute lymphoblastic leukemia. He is now 6 years old and started first grade this fall. He is currently in remission since February 2017 but will need treatment until February of 2020. He's been through 10 months of intensive chemotherapy. This picture is from his first month of treatment."
"My daughter Charley was diagnosed with brain cancer, pilocytic astrocytoma, at the age of 4 months old. She also has a secondary neurological disorder, diencephalic syndrome, caused by the tumor in her brain. Charley just turned 4 years old Aug 13. She has had a total of 13 surgeries, seven of those were brain surgery -- two of them being major brain surgery. Her first major brain surgery was Dec 10 2014. Charley was 18 months old and in that surgery she lost her eyesight. Charley is completely blind, but it hasn't slowed her down at all. She is also completely dependent on J-tube feedings. Charley does not take any food by mouth. She is currently on her fourth protocol of chemo. She has had a combined total of three and a half years on chemotherapy. Charley is a ray of sunshine she has touched more people in four years than most do in a lifetime. I am so proud to be her mommy!"
"Our daughter Ava's cancer journey has been a whirlwind of emotions. Just two months before her third birthday, Ava was diagnosed with a Stage two Wilms tumor. She had a complete right nephrectomy followed by several weeks of chemotherapy treatment over the course of 4 months. We are happy to report that her post treatment scans have been clear. The picture on the left is from Ava's last day of treatment and the picture on the right was taken on the one year anniversary of her diagnosis. Watching a 3-year-old battle cancer is one of the most inspirational things I have ever witnessed. Ava smiled through it all and never complained. We can learn so much from these little warriors."
"This is Alfie. He was diagnosed with ganglioneuroblastoma at aged 3 and a half. At 5 and a half, he was diagnosed with neuroblastoma. He's now 15 and is currently being treated for his third relapse against this evil disease. This picture was taken on his last day of radiotherapy on Thursday. Through this terribly long journey Alfie has always had a smile on his face. He has shown me strength, courage, determination and what it really takes to be a true hero... my hero"
"My Kyla, diagnosed with a very rare inoperable brain cancer at age 4. Four unsuccessful chemo combinations from 2011 to 2014 and then radiation for 40 days, which finally stopped the growth. Two years of no growth then re-diagnosed in July 2016 with two new brain tumors. Two unsuccessful surgeries since then, two unsuccessful chemos since then, and now on her seventh chemo type. She has never given up, even though it's really awful."
"Sally was diagnosed with a rare form of infant leukemia in 2013 at 11 months of age. She endured two years of intense treatment in NYC experiencing broken bones, seizures, a feeding tube and extreme GI issues. She made it through treatment but now has refractory epilepsy, delayed cognitive and physical function and a weakened immune system, all caused by the chemo she received. We had no idea what these kids endure to be 'cured' and how badly research for safer treatments is needed. We're thankful to all of the doctors, nurses and therapists who treated Sally the person, not the patient, and to our 'village' of supporters who continue to be our rock."
"This is Maddox. He was diagnosed with MDS/Monosomy 7 in 2015. In June 2016 he underwent chemotherapy and a bone marrow transplant but relapsed soon after. In July 2016 he underwent more chemotherapy along with radiation and a second bone marrow transplant. He spent his fourth and fifth birthdays at the hospital. We've had various complications along the way and remain in treatment. He's my superhero!!"
"Carson was diagnosed with retinoblastoma at 2 years old. After his intra-arterial chemotherapy failed, he had to have his left eye removed. Watching him battle this cancer and touch so many lives by his bravery, sweet spirit, and amazing attitude changed my life. After being introduced to the pediatric cancer world, we know how dark and scary it is and so very underfunded. We have joined the fight to raise awareness so that more treatment options can be available. These children are worth more than four percent."
"My 2-year-old daughter Keaton was diagnosed with ALL leukemia. Love and support is so important. Cancer is a disease that eats away at anything you allow it to. I've lost myself and continue to try to find myself. My other daughter bears the scars of her sister's diagnosis. PTSD. Anxiety. Depression. Labels just as dangerous as cancer. Unfortunately people think once the cancer is in remission life can get back to 'normal.' Nothing could be farther from the truth. The family still needs love and support because the task of a catastrophic "clean up" is needed. Love and support. That's what my daughter's journey has represented."
"My son Evan, was diagnosed with leukemia (ALL) when he was 23 months old, and then he relapsed in kindergarten when he was 6. This picture was taken after his second round of all over body radiation to prepare for his bone marrow transplant that he would have. His brother, my oldest son who was 11 at the time, was his perfect bone marrow match. Evan is coming up to his five year post transplant day on Sep. 6. The new normal still takes some getting used to, and the battle scars are there. But day by day and year by year it gets better. and we hope and pray that cancer is in the rearview mirror now and forever!"
"Me at 13 years old. I was diagnosed with Burkitt's Lymphoma in 2000. Nine months of treatment that resulted in great, lifelong relationships and priceless lessons learned on how to appreciate life and love those most important to you."
"This is my daughter, Sarah, receiving a life saving blood transfusion on the day of her acute lymphoblastic leukemia diagnosis in Apr. 2016. I remember it as a moment of hope after months of questions and worry. We finally knew what was wrong and while that was devastating, everyone who treated Sarah was so kind and competent. She has one year left in a two and a half year treatment protocol."
"Daxton was 5 years old when he was diagnosed with pre-b acute lymphoblastic leukemia in March 2016. He has had surgery, lumbar punctures every three months, IV chemotherapy, and oral chemotherapy. He had an anaphylactic reaction to a necessary chemotherapy that was meant to help kill the leukemia cells. He has been in the ICU for an infection that wouldn't affect anyone with a regular immune system. Daxton has over one year and eight months left of his three-year treatment plan. He will be 8.5 years old before he is done with treatment."
"My 8-year-old son John, was diagnosed on April 10, 2001 with adrenal gland cancer, in most diagnoses, an adult cancer. After two surgeries and chemo that was tailored to his 42 pound body, he died on October 9, 2001, six months after diagnosis. John was our middle son, and his death left an unfathomable gap in our family, that almost 16 years later, is still greatly felt."
"This is my daughter Maren. Diagnosed with ATRT two weeks after her third birthday. The treatment protocol used for her was published the day after she was diagnosed with a brain tumor. She had a complete resection of the tumor, followed by a 27 day hospital stay. She did six weeks of radiation followed by four rounds of chemotherapy with stem cell rescue. Two and a half years after her initial diagnosis she was diagnosed with melanoma and basal cell carcinoma. Both were treated with surgery only. Today, Maren is a beautiful 15-year-old with a heart of gold. She suffers from late term effects of her treatment, but she doesn't let it get her down. She always has a smile, even in this picture taken during chemo."
"This is my son Michael. At 11.5 years old he was diagnosed with a malignant brain cancer called medulloblastoma. Michael was a football player, green belt/blue stripe in karate, loved to dance and swim. After surgery Michael was left disabled and like a newborn baby. He could not walk, talk or see. While fighting for his life he also had to endure proton radiation everyday for six weeks all while still having to endure physical, occupational and speech therapy. After living in the hospital for three months, he was discharged and then had to endure another four months of extensive chemotherapy. He lost some hearing due to chemo. He had to undergo blood infusions, MRI of the spine and brain, spinal taps, countless tests for all of his organs, countless needle pricks to constantly check his blood and levels. While undergoing chemo, he attended school in the hospital. He said he was going to fail 6th grade because he wasn't gong to let cancer win. He would throw up in a bucket while attending school. Michael is now four years in remission. He's walking, talking and seeing again. He now makes rose pens out of duct tape and half the proceeds he makes he will donate to the hospital's cancer unit. He says to help other cancer children and to give back for those who were there to help him. Throughout his entire journey and diagnosis, Michael stayed strong. Always with his smile, he says, 'No matter what life throws at you, always stay strong. Never give up!'"
"This is Austin, in August of 2015, age 3 and a half, right after we found out he had cancer, and right before we found out it was stage four Burkitt's lymphoma and treatable. He went through six grueling months of chemo, almost all of which was in-patient at Lucile Packard Children's Hospital. He received extraordinary care from doctors and nurses we adore, and our family was overwhelmed by the love and support we received from our village. Austin has been in remission for 19 months and started kindergarten last week. We are so grateful."
"Diagnosed with Acute Lymphoblastic Leukemia at the age of 6, Becca is now 9 years old and in remission after 26 months of treatment. Now, Becca is trying to make a difference and help other kids with cancer. She teamed up with her dad, also a cancer survivor himself, to start a company called Knots & Arrows that sells bracelets and donates 20 percent of every sale to childhood cancer. In honor of Childhood Cancer Awareness Month, Becca has launched 36 new bracelets, all of which she helped design herself, on Kickstarter."
"This is Josh. He was diagnosed with osteosarcoma at the age of 11. He failed his first line chemo and had bone tumor metastasis in his shoulder, rib, hip, spine, ankle, tibia & 9/10 small lung metastasis, as well as his primary tumor in his femur. It is only due to a clinical trial that he is still with us today, a year after diagnose. Several weeks ago he had above knee amputation and he never ever moans about his cancer or pure bad luck. At 12 years old he knows a lot - he is a very clever child... he is on palliative care. You would not believe that Josh was running in the cross country area finals only five months before diagnosis. It can happen to anyone, and this is why we need to be aware of the signs."
"My 9 (almost 10) year old was diagnosed with Ewing's Sarcoma in her tibia in February. Since then she has undergone 10 rounds of chemo with seven more to go and has had limb salvage surgery and is currently in an external fixator. She has had many complications with fevers, infections, punctured lungs but mostly is her spunky, feisty self."
"This is Porter. He was diagnosed with ALL on July 9 this year. He has an estimated 3.5 years of treatment, and a lifetime of health issues due to chemo. His other mom knew he had cancer (although she thought it was a solid mass) for months prior to his diagnosis, but couldn't quite figure out how to get someone to find the problem since multiple trips to the pediatrician led nowhere. He is a happy little guy despite all the horrible things he endures!"
"Our Sebastian had a rhabdomyosarcoma in his bladder and prostate at the age of 18 months. He underwent nine rounds of chemo, surgery, brachytherapy, alongside port access, NG tubes, scans, MRIs, infection, very long hospital stays. He is our superhero son and is now in remission and kicking cancer's butt. We thought we would lose him -- that's a feeling no parent should have to go through. Childhood cancer needs support and awareness to find cures and doctors and nurses need educating in spotting the signs."
"Madelynn diagnosed Nov 2, 2015 at 17 with glioblastoma. She graduated high school in June, despite it all. She is 22 months in now. Even though the cancer has grown, she is still kicking butt everyday. And her birthday is in two weeks."
"My daughter Elisabeth was diagnosed at 15 months old. I took her in for her 15 month wellness check up (without any concerns, she was a normal happy baby), and our pediatrician was concerned with her head growth. She ordered an ultrasound for the next day which revealed a large tennis ball-sized mass in my daughter's brain. We were rushed to CHLA and she underwent major brain surgery within the week. The biopsy revealed she had choroid plexus carcinoma, a very rare and aggressive type of cancer. She had three rounds of chemo where she literally tried taking her skin off because she was itching so badly, stopped breathing, intense mucositis, had a 20 minute seizure and multiple line infections. Then another brain surgery to take the rest of the tumor out. And three more rounds of chemo with stem cell transplants with the latest scare being narcotic withdrawals. We have been told over and over she may not make it through surgery, she may not make it through chemo (her regimen is the most intense out there) but she has battled and is doing just fine! We're in the hospital for another week, and then we will ring the bell! And the hellish nightmare of treatment will be over!"
"My brother, 17 years old, was born with clubbed feet had lots of surgeries as a baby, corrected and had a heart of gold. He spent his last four days with me and his nephews. I took him home because he wasn't feeling well. My mom took him in, and blood results were full blown leukemia. When I received the call from my mom I felt in my heart this was it. It went from him fighting for months, to weeks, days and then hours.. four days later heaven gained an angel. When I think of our visit it was one of the best ones ever.. I think deep in our souls we knew this was the last. miss him dearly.. My nickname he made for me when he was little since I lived on a dairy farm was sissy cow. RIP little brother."
"Evan Nelms, my now angel son, was diagnosed at 4 years old with AML (Acute Myeloid Leukemia) on April 21, 2012. After four months of intense treatment, we believed he was in remission. On January 4, 2013, he relapsed in the testicles, and lost sight in his right eye due to the AML. On April 13, 2013, Evan gained his wings after his heroic battle. We miss him dearly. Please support and donate to research to find a cure for childhood cancer. Fly high Evan, my sweet angel boy! Love always and forever, until we meet again, Mommy!"
"This is Camryn. She was diagnosed with ALL on April 12, 2016. It's been a tough road, but she's in remission and doing well!"
"Jacob was 9 months old when he was diagnosed with cancer in March 2015. His pediatrician felt something was not right when she touched his stomach. It ended up that he had a Wilms' tumor which is a nephroblastoma or a malignant tumour on his left kidney. The tumor was 10cm in diameter and weighed one pound. My son only weighed 16 pounds at the time. It was the most terrifying and heart wrenching experience of my life. He had immediate surgery to remove the tumor and kidney followed by six months of chemotherapy. He is now a smart and vibrant 3-year-old who has been in remission for almost two years!"
"My fighter Alyssa, 8 , relapsed ALL. She received a bone marrow transplant 2015, which came from her brother Jacob."
"Dalton was diagnosed with ALL in August 2015 at age 15. He is now 17 and starting his senior year of high school. He still has 15 months of treatment left and he is my superhero."
"Our brave boy, Reed, was diagnosed a month after turning 3, March 2017, with intermediate risk rhabdomyosarcoma of the prostate. He has done so far biopsy surgery, bone marrow extraction, port a cath placement, catheterized for three months, five months of chemo, surgery to remove his prostate, and 10 days of radiation each time under general anesthesia. We have 10 more days of radiation and five more months of chemo. He continues to shine through all of this, teaching us all that we can do this!"
"Our son Matthew was diagnose with a PNET brain tumor when he was 15 months old and passed away when he was 5 and a half years old."
"Our daughter was diagnosed with hepatoblastoma (liver cancer) on Aug 20, 2013. She was 2 months old and on February 14, 2013 at 8 months old, she underwent a liver transplant and has been in remission for almost four years now."
"My son Dylon was 4 months of his 6th birthday when he was diagnosed with cancer! He didn't have any classic symptoms and was apart from a raging temp well in himself. He endured operations chemo and radiotherapy! He has suffers after mentally and constantly believes the cancer will return was diagnosed with PTSD to! This pic was taken in PICU day after he had the tumor removed along with his left kidney lymph nodes and adrenal gland. He had stage 3 Wilms and finished treatment September 2013."
"This was my son Skylo when he was 10 months old. In this photo he was receiving a red blood cell transfusion after having a platelet transfusion as well. The reality with any cancer is that, once chemo is in your system, your blood cells can deplete to complete zero. Skylo was diagnosed with bIlateral retinoblastoma at 7 days old and began chemotherapy at 9 days old. He had 12 rounds of chemotherapy and 21 days of radiation In order to kill the cancer. This is not to mention the countless infections, blood transfusions, and oxygen issues in between. Childhood cancer isn't always smiling bald kids. There are more of these down days than there are smiles. This is the reality of childhood cancer. "
"The article says it all. Thankfully, my son is now 14 years old with no health issues. But those days...worst of my life, hands down."
"Rosie was diagnosed with malignant ependymoma brain tumor following a 14-hour emergency brain surgery, on Sep. 9, 2015 at the age of 15 for a tumor that was on her brain stem and extended to C1 and C2 on her spine. She had 33 radiation treatments ending Dec. 10, 2015, Scans since end of treatment have been NED (No Evidence of Disease). We are told she will never be in remission. She is a senior at Concord High School and will be graduating in 2018, with honors (4.6 GPA) and hopes to go into the medical profession so that she can be part of the efforts for a cure for cancers and other diseases."
"Our sweet Sienna, diagnosed with leukemia at 6 years old and relapsed at 7 years old. She is now almost two years post bone marrow transplant. It's been hills and valleys, but we count our blessings every day she is still here with us."
"Henrik was an average 10-year-old when a monster came out of his closet and tried to kill him. That monster's name was cancer. He began having trouble reading when he experienced black spots in his vision. Before long, they were accompanied by headaches. During a week-long wait to have his eyes examined to figure out what was going on, he rapidly declined with fatigue, confusion, and further deterioration of his vision. We thought he was experiencing migraines and when things got worse we thought it was the flu. His optometrist had us rush to a retinal specialist, who in turn had us rush to the local children's hospital. Within hours, an MRI showed that he had a tumor growing inside his brain. We celebrated after his second brain surgery when they told us the tumor was benign. Our celebration was short-lived. His tumor is not operable due to blood vessel involvement, and since it's benign cancer treatments like chemo and radiation won't work. We were left with a "wait and watch" approach. His symptoms before diagnosis were due to the tumor's growth blocking his spinal fluid flow, causing hydrocephalus and pressure to build inside his head. Because of that, they surgically re-routed his spinal fluid. That operation allowed for some tumor growth over time, so we hoped. His tumor remained stable for almost a year, but then we noticed one of his eyes drifting and he moved from honor's math to regular grade level. When his one-year MRI showed tumor growth, they deemed it necessary to go in and attempt to remove it, despite the risks to his life. We weren't sure he'd come through the surgery, or if he did we knew he might be blind or cognitively affected. Our hearts sank when we were told they had finished surgery many hours before he was due to be done; we thought they simply gave up and there was no more they could do. When we sat down with his surgeons, the first words one said were 'whatever god you've been praying to, it worked.' We were told that initial pathology, in the operating room, showed that his tumor was now malignant. My husband and I both wept tears of joy. We were told our son had cancer, how could we be joyful? Because we knew it meant his tumor was now TREATABLE. Henrik to date has had three major brain surgeries, chemotherapy, and radiation. He's been left blind in one eye with mild vision loss on the other. He's living with mild high-pitch hearing loss. Now 13, he's growing, and entering 8th grade is in honor's science, math, and English and about to take a foreign language. He's a typical teenager, so it would appear. What a lot of people don't see is his fear, his inner turmoil, his physical and emotional scars, and his survivor's guilt. He's made friends with other kids who are fighting, he's lost friends who fought so hard, and he fears others will also die. He knows some will die. He lives with the remaining benign tumor. He can't play contact sports. He has to be aware, always, that his surgical fix for hydrocephalus can fail without notice. He lives with vision loss. He lives with the fear that his remaining tumor will grow, or turn malignant again, or that the malignancy itself can return. He doesn't know what his future holds - what side effects he may have from cancer treatment as he grows up."
- This article originally appeared on HuffPost.