Humans of Special Love

/Humans of Special Love
Humans of Special Love2019-09-30T10:27:02-04:00

In recognition of Childhood Cancer Awareness Month, we are sharing the stories and faces of our Special Love family.

Humans of Special Love gives you just a peek into the amazing experiences that happen within our programs, providing support and very special love to children with cancer and their families.  We hope you join us as we share what we call the Finding Joy in the Journey.

If you would like to donate in support of our Humans of Special Love, please click here.

Ansley’s Story

“Hello my name is Ansley Johnson, I am 9 years old and I am a camper at camp fantastic. I love to go surfing , dancing, singing and hanging out with my friends. I was diagnosed with ALL when I was 6. It was really scary but the doctor said he would make me feel better. The worst part of my treatment was taking all the medicines, I hate taking medicine. I also didn’t like having to have a ng tube put in. I missed being able to go to school with my friends, when I was admitted into the hospital, most of the time I would be too sick to go play in the playroom.”

“Once I started feeling a little better we started being able to do fun things with special love as a family! Skiing was so much fun, I even got to see a lot of my clinic friends and meet new friends . I love camp fantastic , being away from home is a little scary but I love camp, we do so many fun things. Camp magic means having fun going camping, playing, laughing, gaming, being with friends, spending time with my family away from the hospital, and most importantly–not thinking about cancer.”

“I have met a lot of friends at clinic, I want people to know babies have cancer, kids like my age get cancer, big kids get cancer. A lot of kids go to my hospital, every time I go we see more new kids, it’s sad. September is important for childhood cancer, I hope to share my story so people know that cancer is in little kids and they should be in school not in the hospital.”

Nurse Tammy’s Story

“I’m Nurse Tammy, Medical Director for Camp Fantastic. I began in 1996 as a Camp Nurse just a few years after I started at NIH. My first year I came for just three days and it was so hard to leave.  I swore I would only come for the whole camp every year after, and here we are 24 camps later. Being a part of this camp is the best piece of my job. I tell my parents, (the ones who are nervous about sending their kids to camp and are unsure we are able to provide the level of care we can); “ it is a privilege  you are allowing me to care for your child…you look me in the eye and tell me you trust me to take your child. Doing so is an enormous responsibility and the greatest privilege of my life.”

“Carrying on the camp tradition, we deck out the med staff shirts, accessories, and of course the sick area with flamingos. One Year for Med Staff team building, I made a flamingo logo with a nurses cap and stethoscope and we have incorporated it each year after. It makes the kids feel more connected with our staff. It’s good for the med staff too, we are used to working in a hospital environment, a controlled environment, and we come out to camp and it’s a little out of some of their comfort zones. It can be intimidating to fit in to the Camp Family until you are comfortable, and it helps them embrace their ‘camp personality’.”

“Camp magic is impossible to define in words. It’s a spirit of life that occurs, the kids that have been affected the deepest and have come the farthest show it the most. We have so many kids with depression, anxiety, and other factors in addition to having cancer, but to sit and watch them come out here (Camp) and embrace life and feel safe to step out of their comfort zone is truly incredible. I am blown away when I watch the Talent Show. At a normal camp, they have some kids who are shy or who don’t want the spotlight, but some of our kids even look different because the cancer has affected their little bodies. They act different, they know they have disabilities, they know how they appear to the average person, and yet they get up on that stage and they sing their song or whatever their talent may be. We had one girl, her talent was blowing bubbles, that was it, and everybody in that audience went absolutely nuts to support her. Camp Magic is camaraderie, it’s a safety zone, it is a level of life that is embraced in a way you can’t do in the regular, ugly side, of the world.”

“I wish that people knew that Childhood Cancer is not all sadness. I’m an ICU nurse, I’ve seen the worst of the worst, I always saw the kids when they were having horrible complications. And it was never pretty, it was always ugly, and no one wants to talk about it. But there is a beauty in the life story that happens with cancer. It’s a terrible thing that should happen to no body, but when it does, find the beauty in it. The relationships that are formed with people that rise up for you, and you find who is really in your corner, that’s the best part. These kids just want to be kids, so beyond camp, they want to be treated like normal kids. They want to go to school, they want to be in scouts, they want to do whatever it is their friends are doing. You make relationships that are lasting, that are true and sincere. There is a positive side to this..Camp Fantastic and Special Love are just adding to their life story.”

Lonz’s Story

I’m Casey Lonz Sanders, but everyone calls me Lonz. I love animals, video games, building computers, and I was on the FRC Robotics Team. Before my paralysis, I played tennis and ultimate Frisbee. I even painted my car..which I love! My parents found Special Love and participated in their Parent’s Weekend, with those parents suggesting I try a Young Adults Cancer (YAC) weekend, so I did and really enjoyed it, even keeping in touch with several other members of the weekend. Honestly I’ve never connected with so many people so fast.

In January 2017, after a month of terrible headaches, my local doctor sent me to UVA Hospital for scans.  The morning of the scans I had a seizure and was taken to UVA hospital in an ambulance only a few hours before I was scheduled.  Scans showed a cavernoma (a cluster of blood vessels popped in my brain), which is very uncommon for someone my age.  I underwent brain surgery a few days later.  Unfortunately, the doctors seen the brain tumor growing on scans or during this surgery. I recovered over the next five weeks, returned to school and even went on a school trip to Italy over spring break. I thought my life was back on track.  However, after a week back in school the headaches returned.  UVA had decided to leave about 5% of my cavernoma because that part was  dangerous to operate on, but now found it was still bleeding out of that 5%.  Doctors were forced to operate a second time and when woke up I was paralyzed on all muscles on the right half of my body,  in addition to not being able to speak.  It was during this surgery the doctors found the brain tumor, which had been causing all of the medical problems in the first place.  It took over a month to diagnose, but eventually they classified my tumor as an Embryonic Central Nervous System tumor.

Over the next nine months I did therapy while undergoing radiation at UVA, and chemo in DC.  I developed a 15 inch blood clot as well. By the late December 2017 I reached remission, but had lost about 50 pounds.  I recovered briefly until I caught chicken pox, due to chemo completely obliterating all of my white blood cells. I went a full 10 days without it eating or drinking at all.  Water and meds  were entered through my port, and I lost another 60 pounds.  I started treatment weighing 220 pounds, and at the end of steroids Post- Brain surgeries,  and I weighed 110 pounds.  Keep in mind that I am 6’2’’.  Since then I have recovered to about 130lb.  I still cannot use my right arm, but it is improving slowly. I slowly went from a wheelchair, to a cane, to walking independently with ankle brace.

I have participated in two Special Love events so far, as we just found you guys this year, but having pretty much everyone around me, campers and counselors, know at least a little of what I’ve been through is so reassuring. I also think the programs for the whole family are really important. A lot of family members can be affected psychologically, as much as the kid/patient. Early on in my experience, I felt as though my family struggled even more than I did, in their own way. This is why Childhood Cancer Awareness Month is so important, it really humanizes the people who have been affected by this disease.

Emma’s Story

Hi my name is Emma Snider, I’m 15 years old, and a Special Love BRASS camper.  When I was 9 my life changed drastically when my 15 year-old sister, Abby, was diagnosed with T-cell Acute Lymphoblastic Leukemia. When the doctor  said; “Abby, you have leukemia”, those four words changed my life forever and I was no longer a normal 9 year old girl. Over the course of her 3 year treatment her body was put past its breaking point over and over from chemotherapy and radiation, treatment that was supposed to save her, brought her close to dying too many times to count. I still remember the most challenging time of her fight, as it will forever haunt me. The first few weeks of utter devastation and sorrow like they happened yesterday. I wish people knew what cancer really does to the families it invades. Those happy bald kids you see on TV are not the reality we live in a daily fight with cancer. My reality was walking into my sister’s room watching her grasping onto life and fearing the next time I walked into her room she would be gone. People only see what we show them, and what we show them is our fake smiles because sometimes the fake smile is the only thing keeping us from breaking.

Brass Camp is where the fake smile become real smiles for me. We always talk about how there is a sense of magic at camp. This “magic” brings us together and makes us forget about our lives for a split second, allowing us to heal and gain hope to take back home to the battle grounds. This magic to me, the thought of coming back every year was at one point the only thing keeping me from losing all hope. Every time we attend camp we take a little of it back with us. That magic for me, what I took back the first time, it was hope.

I’m writing this in honor of Childhood Cancer Awareness month, the time people who have been affected by childhood cancer, or who genuinely care about the cause, can spread the word. We can show the reality of childhood cancer and what we live in. It may not prevent someone else from going through it, but it may encourage others to take action. There are so many needs in the world of childhood cancer, to list them all would take a lifetime but that’s why we have this month. You could help with finding a cure for childhood cancer or helping a parent find the income they need to help their child receive lifesaving treatment. Or you could help give a kid with cancer their fight back…or give a little 9 year old girl hope that her sister might live when all seemed hopeless.

Dr. Steve’s Story

I’m Stephen Chanock, MD, known as Dr. Steve (or the guy with the crazy hats), at Camp Fantastic. I am the medical director of Camp Fantastic and the principal investigator of the National Cancer Institute’s protocol that oversees the medical care at camp. I am also serve as the federal Liaison to the Board of Special Love. I’ve been a part of Special Love for 28 years- 2 as a volunteer doctor (1992-1993) and 26 as the medical director. I lost my older brother in 1980 to a rare pediatric cancer- treated at the Pediatric Oncology Branch (POB) at NCI, which shaped my career direction. After being trained at Harvard and the Jimmy Fund, I returned to the POB/NCI as a junior investigator in 1991 and immediately engaged with Camp Fantastic. I spend the majority of my time trying to understand patterns of cancer and how genetics contribute to risk for cancer, especially, pediatric cancers, and every summer I go to camp and have the privilege to witness and be among such wonderful children and staff. The experience re-sets my compass- both personally and professionally- underscoring why I work too many hours.

I hear this term “camp magic” bantered about quite often. The truth is, every day at camp is magical. It is the small moments of friendship and fellowship that remind me of the wonderful love and spirit of camp- where most of the silly conventions of adult behavior are left behind and all generations are inclusive and connected.

Childhood Cancer Awareness Month is critical for all to recognize the effect of pediatric cancer- not only on the child, but the family and community of supporters. We know there are more than 400,000 survivors of pediatric cancer right now, many of whom continue to have to address challenges directly related to their diagnosis and treatment. The biggest misconception I encounter is that pediatric cancer is a death-sentence- which could not be further from the truth. Today, nearly 85% of children diagnosed with cancer survive 5 years or more. The other side is that until this number is 100%- and with substantive reductions in survivorship issues- we will not rest! Progress has been steady but we still have hard work ahead to eliminate or treat all kids with cancer. We also have to work harder to understand and support the survivors of pediatric cancer. Special Love is a wonderful organization committed to the full life of the child with cancer- as well as their family and supportive community. The diagnosis of cancer in a child is a community event and Special Love is a remarkable organization that addresses so many of the aspects of ensuring so many children can live life to the fullest!

Jyothi’s Story

My name is Jyothi Raghavan. My son Nitin Ramachandran is a cancer survivor, diagnosed with medulloblastoma (brain cancer) in March 2014. He had surgery and received radiation and chemo for over a year and finished his treatment June 2015. Radiation made Nitin so weak that in July 2014 he was fitted with a g-tube as he had lost significant weight. We spent a great deal of time in and out of hospitals, both for treatment, as well as treatment induced side effects. During all our hospital stays the child life specialist Holly Senn would constantly talk about the organization Special love and how she thought it would benefit Nitin. Still sick, he attended Camp Fantastic 5 years ago for the first time, with me calling Nurse Tammy every day to check on him. Now in his first year of college, Nitin intends to attend Camp Fantastic as counselor next year. I can’t imagine what we would’ve done without Special Love.

The mental well-being of the child undergoing treatment and their family is a critical element of how the child responds to treatments. Camps offered by Special Love for the child and their family members truly focus on that and works magic on everyone. It is amazing how a family weekend camp offered by Special love can provide some much needed recharging to the child and family to continue with the fight. And when your child walks away for a week without you to be at Camp Fantastic, the fact that he gets amazing care from the volunteering medical staff gives you so much peace. And the kids have a fabulous time – they are for the first time with their true peers, other kids that have gone through what they have and understand what it means to be there.

Currently only 4% of cancer research is allocated to childhood cancer. Of course this number needs to increase to provide the breakthrough treatment options of childhood cancer. However I personally like to focus on how a family can be supported once the diagnosis occur. A family with diagnosis needs much help to navigate the horrible disease and one of the key areas is mental well-being of the child and the parent. So organizations such as Special Love which focus on that is very dear to my heart. We are deeply committed to helping Special Love – it made such a difference for us personally.

NIH Life with Cancer KOA Care Camps Children's Oncology Camping Association
Childhood Cancer Community Consortium Youth Development Center NOVA 4H Amazon Smile