Your Stories

Jessica Randall

6-6-1990 - 6-9-2007

Jessica led an extremely NORMAL childhood up until April 4, 2006. On this day, at the age of 15, she experienced something extremely ABNORMAL: a grand mal seizure.

We visited many doctors and specialists and she finally had an MRI on May 25, 2006 which showed a lesion in her brain; in the left lateral ventricle. Resection surgery by craniotomy was performed on June 8, 2006; two days after her 16th birthday. Eighty to 90 percent of the tumor was removed, and pathology revealed it to be malignant: Grade 3 (anaplastic) astrocytoma.

Jessica received the “standard” treatment for a high grade glioma: radiation with concomitant chemotherapy (Temodar). Things went along fairly smoothly for quite a few months, but not without some hurdles. She continued to suffer from seizures, but we were able to control them pretty well with medication.

In January, 2007, an MRI showed enhancement of the original tumor site. It was decided that the chemotherapy was no longer acting effectively. We decided to enroll in a clinical study at DC Children’s National Medical Center (Avastin/CPT-11). In February, 2007, a spinal MRI revealed a new mass in her lumbar spine. We went ahead with the study (involving a proven chemotherapy drug, along with an antiangiogenesis therapy which has been shown to prevent the growth and survival of renegade blood vessels that provide the tumor “life”).

Things went downhill from there, with progressive fatigue, memory issues, and headaches. On May 9, 2007 an MRI was performed that provided us with devastating news. There was a new mass behind Jessica’s brainstem. Because of this development, we could no longer participate in the study, and we brought Jessica home on Hospice.

Jessica’s health declined quickly, but Hospice was amazing and we were able to keep her home and to keep her comfortable. We shared many good long-lasting memories, and her soulmate Joel came from Minnesota and spent Jessica’s last weeks right by her side.

Jessica earned her wings on June 9, 2007; three days after her 17th birthday, surrounded by her mother and father; her brother, Jake; her boyfriend, Joel; and her kitties.

(Jessica's story provided to us from her Mother Heide)

Stephen Whitlow

5-8-1996 - 9-27-2008

In February 2006, Stephen was nine years old, and it all began with an upper respiratory infection and headaches. Antibiotics took care of the infection, but the headaches did not go away, they worsened a little each day. Stephen only wanted to sleep and complained that his head hurt. After 3 doctor visits to the family pediatrician, and after Stephen said that his left hand would not work normally, so we took him to the Dallas Children's Medical Center ER where he was diagnosed with a grapefruit sized brain tumor. A CAT scan and an MRI confirmed it. On March 1st, 2006, the neurosurgeon, Dr. Weprin, removed 85 to 90 percent of the tumor, which we later found out was a Glioblastoma Multiforme (GBM) Grade 4. He started radiation and chemotherapy but the tumor grew back in less than three months. The tumor was surgically removed once more along with more chemotherapy and it appeared successive. We thought he was home free until September of 2007 when Stephen’s MRI showed that tumors were now forming in other parts of the brain, too many for surgery. We tried different chemo options but nothing seemed to stop the growth of the tumors. His medical team urged us to call for hospice care, for Stephen was not expected to live but a few weeks longer.
We were not going to give up this fight just yet! We researched alternative medicine and therapies. My mother and Stephen flew to Tulsa, Oklahoma and lived there for two months near the Camelot Cancer Care Clinic. DMSO and Sodium bicarbonate treatments were attempted in hopes of slowing down the spread of the tumors. But shortly after returning home, Stephen started having seizures due to more tumor growth in more areas of his brain. He again was hospitalized and started a new chemo regime. By April of 2008, Stephen was extremely sick due to this chemo. We had researched even more into alternative treatments and found an alternative doctor in Kingston, Jamaica. She was offering a four-week treatment that had shown some success. So mom and Stephen, once again, packed up and moved to Jamaica for a month. Stephen seemed to show progress in the way that he felt. After his treatments were finished my father and I went down to Jamaica and all four of us stayed six, carefree nights at a resort in Negril, Jamaica. But as soon as we all got home, Stephen’s disease progressed more and more to the point where we had to place him on hospice care. September 27, 2008, Stephen lost his life to the dreaded cancer. But we all know that he is now in such a better place and is not suffering or in any more pain.

Writen by his big sister Carolyn, 17.

Parker Elarton

Beating Cancer!

My name is Rachel. I am almost 17 years old I am a Jr in high school. Last year I was 16. Last year my youngest brother, Parker, was diagnosed with cancer. He was only 5. He'd been sick off and on for 6 months before anyone thought to give him a ct scan. I was at school when they did it. My grandma picked me up and we went to my Dr's appointment. My other brother, Ethan, and I went back and while we were in the office my grandma got the news. Parker had a brain tumor. When we came out she told us we had to go to the hospital. And immediately I thought, "My brother has cancer, I know it." We got there and he was lying in bed. I sat with him and we pointed out all the different animals around the room on the walls while our mom talked with the doctors. Neither me, nor Parker, knew what was happening. Then my mom came in and called me into the hall way. She took me down to the waiting room and we sat. I looked at her and I said, "Mom please dont tell me he is going to die." she looked me in the eyes and said, "Parker has a brain tumor." Never in my life have I felt pain like that. I couldnt stand, I fell to my knees and bawled. I screamed that it wasn't fair and what could he possibly have done to deserve this. I cried it all out and walked back to the room to see him. He still didn't know and I sat down and I hugged him and I told him that I loved him and we blew up the hospital gloves to make "Rubber Chickens". I called my Dad and he came from work to be with me even though Parker isn't his son. They diagnosed him with Hydrosephilus (I can never spell this right!) as a result of a brain tumor caused by Craniphaningioma.They told us he need surgery, and fast.

They scheduled his surgery for the day after Thanksgiving (November 23), so if anything went wrong we'd all have that holiday to remember. That scared me, alot. I took tons of pictures and I recorded a video of Parker telling me he loved me. Just in case. He carried around an Elephant I bought him that he named, L. E. and on the day of surgery I woke up early to go with him, I held his hand in the elevator on the way up and played with him in pre-op. Then when they came to take him away he kicked and screamed and begged us not to make him go. It was heart wrenching. Then we waited, and waited, and waited....it was the longest wait of my entire life. When the doctor FINALLY came in we all jumped up at once. He had come through fine and we could see him, two at a time. So we all moved to the ICU waiting room and my Mom and stepdad went in first. Then my stepdad left and I went in to see him.

He was so swollen and he was still groggy but it was so good to see him. We took pictures so when he could open his eyes again he would be able to see what he looked like. We brought him home November 28. A simple 5 days after brainsurgery. It was so good having him home. Then on December 15th my mother, other brother, Ethan, Parker, and stepdad left for Memhpis TN. He was going to stay at the Ronald McDonald House and be treated at St Jude. His Radiation treatment began and I couldn't be there. It was killer. I missed him terribly. But I tried to talk to him everyday.

Then on January 5th my Mom's best friend; better known as Aunty Alison, her daughter, and I set off to see my family at St. Judes. We pulled up, after a 7 hour drive, at Ronald McDonald's gates. I was so excited I was shaking. I had missed them so much! We parked and I got out and bolted for the doors. Anyone who has been to Ronald McDonald House knows you can't just bolt through the doors without some kind of sign in process so I was stopped. I was signing in as Alison came in and then I heard my moms voice from down the hall. I dropped my pen and clipboard and I ran to her. I cried and hugged her and immediately asked where Parker was. After a few more minutes she took me to see him. He was upstairs with Ethan playing in the game room. I snuck in and sat beside them. Then when he saw me his face lit up. They both jumped up and gave me big hugs and exclaimed how much they missed me. I cried, again, and held them both tight; of course Parker claimed I was "squeezing the life out fo him" so I let go. I was so glad to see them. We did so much in memphis in the 3 days I was there. Anyone who goes to St Judes definately needs to visit the Zoo. It was out of this world. St Judes has done so so SO much for us we could never repay them. How do you repay someone for saving someone's life? You just can't. They housed my family and they saved my brother's life.

On Febuary 7 they arrived home, 5 days before his birthday. In fact they were early! I heard the doorbell ring and I thought who could possibly be at the door at 10 'oclock at night?? So I looked out the window and there was Parker, standing at the door. I thought to myself, "Oh it's just Parker....WAIT OH MY GOSH PARKER!!!" and I flung open the door and hugged him and then ran out to see my mom. I was ecstatic! They were home and everyone was happy and healthy. Parker started school again soon after, half day Kindergarten. I was so proud of him. They went back for a two week check up and they operated again to drain a sist that had grown on the tumor's spot. Parker came home with a new port, in his head. We went the summer with some mild headaches and some vomiting but other than that he did great!

We went back in July, I went with this time. We stayed at the Grizzly House but didn't do any sight seeing. They told us that Parker was doing so well that in one year they wanted to remove the port in his head. We were so happy for him. We had his hormones checked out and a few were slightly eskew but nothing to be worried about for now.

My brother Parker is now 7 years old and he's in first grade; going a full day at a time not just half days. My brother has had brain surgery twice. My brother has battled cancer and won. My brother is my hero.

Donnie Moore

11-7-1955 - 05-28-1968

My 12 year old brother Donnie died of cancer (Medulloblastoma - just like Tyler's cancer). However he died in 1968. I was 9 years old when he died, so I was his "little" sister. Back then if you weren't 12 years old you were not allowed to go into the hospital room to visit at all. I was the only one in our family (I had 2 other older brothers, 5 and 10 years older than myself) who had to wait in the waiting room while they visited with Donnie.I wasn't left alone mind you, but it was very difficult for me to not be able to see Donnie. Donnie was very active in sports, in fact he just plain loved being outdoors and being with friends and family. He was so considerate and caring. We lived in a neighborhood with almost all boys, so I grew up a tomboy. When I got to be old enough to play ball he would include me in their games. Except for "tackle" football - then I could "cheer" on the sidelines. He was always watching out for me. When school was out he and his friends would wait at the school corner until he saw me with my friends. Then he'd walk behind just far enough that he could see me. He was my protector, and always there to make sure I didn't do something stupid.

Back in '68 cancer was not talked about. There was still a lot not known about it, and there were even people who thought that it was "contagious". My mom and dad were separated, so my mom was the main caretaker. They operated and removed the tumor, and I think it was considered a success, but the doctor told my mom that it was the type of cancer that could grow back. He stayed at the hospital for his rehab and recovery. Donnie did suffer some brain damage during his surgery. He had to learn to talk and walk again, and had weakness on one side. He also wore a patch over one eye to strengthen his bad eye. He was eventually able to walk again, but not without a limp, and many times his leg would go the opposite direction his brain would tell it to go. Some kids made fun of him, but Donnie never let it bother him.

When Donnie came home from from the hospital it was one of the happiest days of my life. I was so anxious to see him that I ran all the way home from school. Now, mind you because I was not allowed to see him while he was in the hospital I had not seen what he looked like. When I got home and saw him, it frightened me a bit. He had this huge bandage all over his head and he was thin and weak. He immediately raised his arms up and his eyes teared up. At first I was in shock, but then I went over and just held him. He was HOME!! We all helped with his re-learning to speak and write. He was a very determined young man, and I never saw him give up. He collected baseball cards so that's what we would use to help him pronounce players or team names. If he couldn't pronounce Minnesota, he would just say Twins. He didn't let it get him down. He was so excited when his recovery allowed him to return to school for just a few hours at a time. He missed being with his friends at school. His buddies would help him walk through the halls. One time I remember seeing a buddy on each side of him and they were arm in arm laughing and carrying on just like they did before he was sick. It was a very moving moment.

Then he began to feel ill again so my mom took him back to the doctor. This time the tests revealed that tumors had grown on his spine and it was inoperable. They referred him to the City of Hope in Duarte, California where he went for experimental treatment - chemo of some sort I guess. After several months there it was determined that his cancer was not going to be stopped. Instead it was progressing and the treatments would possibly delay his death, but the cancer was terminal. My mom (and dad) I think talked with the doctors and they all decided to tell Donnie how serious it was. He was told he could stay at the City of Hope and have all of the medications, treatments, 24 hour nursing care available to him and survive longer, or he could go home with very limited medical care and most likely have less time. Donnie wanted to come home, and I doubt there was much of a hesitation. He just wanted to be home. Hospice was not available back then so my mom and my grandma were his caretakers. This time when he came home from the City of Hope I was totally unprepared for what I was going to see. By not being able to visit Donnie I was "protected" from seeing the progression of his disease. Our family had a tough time with Donnie's diagnosis and illness. Meaning we didn't talk about it openly. Support groups may have been in the works, but there weren't any available back then. So we all just tried to get through each day the best we knew how - in our own way. We were a family, but we found ourselves afraid to talk about it. I knew none of my friends had gone through it and I felt there was no one to talk to. A lot of the adults that were coming by were saying things like "you need to be extra good for your mom" or "you need to help your mom as much as you can". I knew my mom was feeling overwhelmed, but it felt like everyone was looking right over me or past me. I know now that the adults were reacting like that probably because they were watching someone go through a parent's worst nightmare, and to see someone they know go through it frightened them into realizing it could happen to them too. It was not an intentional oversight to focus more attention to the parent and the dying child. I guess in my own mind I felt "out-trumped" because I was just Donnie's kid sister which I didn't think was as important as being a mom or dad. When Donnie died I was not prepared for it at all, and it was so painful. I wanted to scream and cry but I didn't think I was allowed to. None of my friends knew what I was going through so there was no one to talk to. So I learned to swallow my pain. I had to find a way to stash my pain away somewhere because I had school to think of, life had to go on. Although for me it felt like the world stopped. I'd look out at the playground during recess and see the kids laughing and playing and I wondered if I would ever feel like laughing and playing again. I was numb. I didn't want to get out there and laugh. How do you adjust to not having your brother around anymore?

I have wanted to talk about Donnie for over 40 years. I've wanted to share about us growing up, I've wanted to share about how I felt when he was sick, and then after he died. But for years and years I never knew or met anyone I felt would understand. When I tried to talk to people I always saw this gaze of discomfort. So I stopped trying to talk to anyone. Maybe the pain has lessened after 40 years, but I have carried around this "ache" of not being able to share Donnie. I knew I needed to learn to live without him on Earth, but I didn't know how to learn to "not talk" about him. For every person I met who couldn't understand my perspective I justified it in my head that "I was being selfish for feeling my emotions". So I learned to just stuff it. I can't remember what his voice sounded like, or the touch of his skin, but I can feel his love deep down in my heart and soul, and I know that he is still watching out for his kid sister.

I've learned that you need to have someone to talk to - someone who can relate to you or who can understand what you are going through. Don't feel you have to stuff your emotions. Take advantage of the support groups out there. It's very important to connect with someone who can give you the support you need, and validate that your pain is just as real and just as painful as anyone else's - irregardless of your age.

If you're a child, there's no way you can know what it's like from the parents' perspective, and if you're a parent and you haven't gone through it as a child, they won't be able to understand it from the child's perspective. Each has their own very real pain to deal with, and it doesn't go away overnight. It's a process, and it takes time. Give your mom and/or dad a big hug, tell them you love them. They are trying to work through their feelings as well.

"Talk" about your brother/sister, and keep their memory "alive". Designate a special place in your room or within your home honoring your brother or sister; such as putting keepsakes into a shadow box and displaying them. Put together a memory book.

Reach out to other kids who are going through this. You can't stop what's happening to their brother/sister, but you can help them by just telling them you care and letting them know they are not alone. Lets us siblings show our support for each other. Tell others about Jess's webpage - where they can come and have a place to tell their story, and know that others can "relate" from the perspective of a brother or sister.

Thanks Jess for setting up this web-site!! There are so many times when we feel as though we are helpless in this war on childhood cancer. You're taking action and setting an excellent example of what we CAN do. That's what our focus has to become, what we "can" do rather than what we "can't" do, and the more that join in to bring awareness, the better chance we have of finding a cure.
-Sally Daniels

Hi all, I’m Carla Hood and this is my story. I cannot say that I know what it is like to be the sibling of a child in this fight, because frankly I don’t know. I can say without question that I am lucky enough to be numbered amongst those called "Long Term Survivor."

You see, on January 22nd, I will mark 42 years post diagnosis of Stage 4 High Risk Neuroblastoma. I was one of the voices that nobody would have heard, because at 8 1/2 months of age upon diagnosis, I wasn't even talking yet! But, here I am now, I can speak up to be heard and be a voice for those that are in the same position now that I was in 42 years ago.

I can only tell my story by what I’ve heard over the years, but this is how it played out:
I was born May 5th 1967 in Spokane Washington, a fighter from the beginning as my heart stopped once on this day and my Mom’s heart stopped beating 3 times. Thankfully, the doctors managed to bring us both back around with no ill effects. Aside from this, I was a happy, healthy baby with not a care in the world until I was about 8 ½ months of age; then my whole world changed.

The day this all began was typical, my sister (who had just turned 8 almost 3 weeks before) was attempting to change my diaper. Mind you, back in 1968, it was cloth diapers with safety pins. So, she’s trying to fasten the safety pins and to her astonishment, she couldn’t get the diaper to go around me because my stomach was as hard as a rock and unforgiving. She immediately went out to tell our Mom what happened which brought Mom in a hurry to check out the situation. When she realized that she wasn’t able to pin my diaper on me either, she decided it was time for me to go to the hospital. Upon arriving at the hospital, I was admitted and taken for tests. The doctor was clearly disturbed by his findings, but he nonetheless told my parents he believed I had Stage 4 High Risk Neuroblastoma. I was admitted to the hospital at 4 p.m. and my parents went home at 10 p.m. that night. This was on my Dad’s 37th birthday and I was in St. Luke’s Hospital. I was there from Monday the 22nd through early Saturday the 27th, when I was then transferred to Sacred Heart Medical Center where my surgery was scheduled to happen on January 28th at 11:00 a.m.

Surgery took 7 hours, from 11:00 a.m. to 6:00 p.m. It took my right kidney and a 2 ½ pound tumor the size of a big man’s fist. My chemotherapy didn’t begin until the 5th of February. I can only say I know I had 5 series of shots, spaced at 2 day intervals (given the 5th, the 7th, the 9th, the 11th and the 13th of February) and it was 250 shots total in the tops of both my hands to dissolve away what remained of the cancer on the outer lining of my stomach and on my left kidney. I do not know the name of the chemo drug I was given but I do know that my Mom asked how potent it was and my doctor (Dr. Chadwick F. Baxter) showed her. He held out his arm, exposing the starched white cuff of his shirt, allowed one drop to drip onto it and it ate right through the cuff of his shirt. My initial stay at these 2 hospitals was a combined 26 days, but all toll I was in the hospital for 110 days, with treatment, check ups, etc. until I was found to be NED in early 1969. I was literally caught teetering in the balance - would I live or would I earn wings. Six people believed I wouldn't even see my 1st birthday, yet in May I will see my 43rd birthday and unfortunately those 6 people are no longer here to share in it. I suppose I should also mention the fact that thanks to my parents, I donated to science before I even had any idea what science was; they donated my right kidney and the tumor to the University of Washington’s Medical Department for study. (So, hopefully, I’ve already had a hand in helping with the research toward finding a cure!) I am in this fight for life, childhood cancer has met its match and I can say I will not stop until there is a cure!!

Any medical problems I’ve had since that time were non-related. I believe in God, Guardian Angels and miracles. I’m pretty sure I’ve been blessed with a Guardian Angel since day one because I’ve also nearly choked to death (13 months of age), nearly drowned (3 years of age) and been hit by a car (9 years of age.) For just over the past 5 years, I’ve been working as a CNA at the local nursing home. I truly love my job and I still continue to make it fun, not only for me but for the residents there, as well.

I posed these next questions on my post for the Briefing Report for the Childhood cancer question to President Obama:
~If the soldiers on this field of battle against childhood cancer are infant to teen/bordering on young adult age, then I want to know:
1. Who will take a stand and be a voice for these children who face this horrendous battle with bravery and courage?
2. Who will raise awareness of this destroyer of life?
3. Who will make sure all these stories get told?
4. When will these young voices be heard?
The answers for me are crystal clear:
(For the first 3 questions the answer is the same each time.) I will, we will and hopefully YOU will. ONE VOICE - UNITED!!!
(For the 4th question) NOW is the time for change, NOW is the time for even the smallest warrior's voice to be heard (even if it means SOMEONE ELSE speaks for them on their behalf!)~
I aim to do whatever I can in this fight to cure childhood cancer because it isn’t just their fight, it’s ours too! Our children are our future, without our future what have we got? This is my story, these are questions we must all ask ourselves and this is a fight for life!

In September of 2009, I stepped out of my comfort zone. I followed God's path and where He led me. Until the weekend that began on (Friday) 9-11-09: I'd never flown (never found good enough reason to), I'd never spoken to a large crowd publicly about my being a Long Term Survivor of Childhood cancer, I'd only met some of the people there online (not real time) and I'd never even been further east than the Northwest corner of South Dakota. After I arrived, met people who I now consider family, spoke and participated in Aimee Dickey's Walk for Childhood cancer Awareness (on September 13, 2009), I honestly didn't want to come home because I found people who absolutely "Get it!" I had never before been around a group of people where I didn't have to explain, because they understood!!