HOW A LITTLE GIRL MADE ME AWARE
The story that follows was written by Cory Chinn of Greenville, SC.
I will tell you up front, this is a emotionally tough story for me to tell. It is a story of courage and heartbreak. It has drawn me closer to myself and my family and is the story of how a little girl I have never personally met changed my perspective. It has made me aware. 5 years ago I learned of a family friends daughter’s illness. I had very limited information, but I knew it was not good. I quickly signed up for the blog to track the progress and what they were going through. After the initial surgery, they came back with a crazy looking word…ependymoma. I quickly ‘googled’ the disease and the rate of survival, prognosis and any other information I could find. It was not anything I had heard of, thought about or even considered. This terrible disease was cancer. Wow. Kids get cancer? I knew I had heard of such a thing through the St. Jude commercials that pull at your heartstrings with the children you think you’ll never know asking and pleading for support. I knew it existed, I just didn’t know it existed in my circle of family or friendship.
She was the same age, almost to the day,as my daughter. Blonde, cute as a button and full of 3 year-old spunk….just like my daughter! NO WAY! She has cancer? Offering messages of support and praying for them regularly, I decided that it would be important to speak to my kids about what this means. My own daughter decided that she would pray for her new friend Campbell, who she had never met, to help her. The first few messages were very hopeful! Full resection (which I now know what that means in cancer related surgeries) and a positive immediate prognosis. After a couple of days and mentions of pumpkin ‘muffies’ from Panera Bread, I figured it was the least we could do to send a gift card for her to get something over several trips.Little did I know that was only the start of my journey to getting to know Campbell Grace! Over the course of several months reading of the trials and tribulations of the complications from meningitis, shunt issues and other problems, it became a daily thing to check up on our new family member Campbell. If I didn’t remember, my own daughter would ask, “How is my friend Campbell?”. This was something that I did not expect. I had always heard that others mentioning cancer related illnesses their family had gone through(breast, liver or colon), but the childhood cancer topic never really hit home.Having my kids become aware was very important to me. I decided that I would help them any way I could, especially in awareness.
Good News! But…
During the next several months in 2010,the blogs and facebook pages were updated, progress made and things seemed to be looking up for our little friend in New Jersey! She was a fighter, that was very evident. There were setbacks in a few of the surgery-related things, but nothing she could not overcome. In the Fall, about 1 year post original diagnosis that we saw the blog post…ALL CLEAR! No evidence of disease! What I learned from that is that the visual signs and prior areas where no longer there. What I came to see later was that the disease was still there. Just because the cancer seems to be gone, there can always be cells somewhere in the body. This little girl, celebrating the same things and wishing the same wishes as my own daughter, was fighting a beast. Like I said, I had no idea what type of beast this was when I first learned of the name ependymoma. She was going to beat it…I just knew it. Full resection, NED 1-year later, the writing was on the wall. She was a survivor!
No News is good news, right?
Over the next 6 months, very little was said on the blogs, well, actually nothing! Which looking back was awesome. No news is good news, right? In the middle of 2011, the blog was updated and it was the news you never hope for. Something was just ‘off’. There were scans done and it showed new tumor growth. I quickly thought to myself, “Full resection is just that isn’t it?”. As I found out about the way cancer grows, that’s where the NED is misleading. The tumor had grown just outside the radiated area in her spin. She started some treatments to prepare for hopefully successful surgery. The day came and the result of the surgery were again very optimistic. They were able to get the entire tumor once again. Wow! God’s hand was truly at work. Like I said, she is a fighter. I knew she was going to win and not be a statistic. My family continued in their daily lives and we welcomed a baby boy to the family. Every time something didn’t seem right with the baby, or my other kids, I would get on the internet and search just to make sure if it was a symptom of cancer, we would get an early start. In the back of my mind always thinking, “Did the doctors miss something?”. Of course not, but when you start to become aware, you open your eyes. This disease was something nobody could have foreseen. Why would you have your child scanned for cancer with no symptoms and so young. Campbell is the catalyst for the beginning of my awareness and push to spread her story to make other aware of the need for research and funding. I raised a little money from co-workers, but again, who really knew kids got cancer?
Relapse and the spirit of a warrior
Bring itOver the course of the next few months in 2011, things were not always what I would have liked to hear. I was hoping to not hear anything, but instead it was about new tumor growth,residual tumors and blood transfusions. The year ended much different than the previous. As my daughter was experiencing school, ballet and just being a kid,there was a similar girl in the fight of her life. 2012 started to look a little more positive with the chemo treatments seeming to keep things in check.Although that was good, the other illnesses always seem to be another issue.The next few months saw her complete her final rounds of the initial type of radiation treatment. Since this is something that can cause issues later down the road, 3 rounds is the max. Her body, meaning her skull and spine, just cannot handle any more. As I learned as well, this was the best treatment for her, so looking at chemo only was not the best outlook for ridding her body of this monster. It was hard to read of the needs of transfusions and just how much her little body had to withstand. It was good to read that she keep a positive attitude through it all! We see too many adults complain of a sore this or that, a headache or something not important. This opened my eyes. If this little girl can do this with a smile and positive attitude most of the time, surely I can do better.You often read of a person’s ‘warrior spirit’. I know that Campbell had a warrior spirit, but more importantly, a spirit of a warrior. I would look at her pictures and read the things she was doing and match that to my own daughter.She kept up better than most and had a disadvantage from the beginning.Whenever my daughter would not want to do something or complain, I would always think that these are the moments I should treasure. That is not to say I did not get frustrated at behavior and attitude, but my eyes were slowly being opened, and it took a little girl fighting cancer.
Bumps in the road to recovery
After hearing that things seemed stable, it was the middle of 2012 that we read the news that there was a bump in the road.New tumor growth and other areas of concern. As school was getting ready to let out where we live, it was just another beginning to another treatment for Campbell. During this time following her on facebook through both her parents,I would let curiosity and the need to be aware get the best of me. I would click on the other pages of the other kids she was friends and were following.These were kids like Cooper – Cooper’s Little Red Wagon, Asher – Asher’s StromTroopers and Aaron – Team Aaron (Bell). There were other’s as well, but they all had the same thing in common, all children who had their whole life in front of them, all will be taken WAY to soon. During the summer, we followed her progress and what seemed to be a normal little girl on the outside was being tormented on the inside. At the end of the summer we found out that the tumors were not responding to the treatment and had grown…significantly. Since there were limited treatment options, Greg and Robin were able to look at clinical trials and to St. Jude (remember, the heartbreaking stories of kids I would never know?) for hope. They were able to start the clinical trial and later it was time for, as Robin posted several times, ‘Scanxiety’. This was something I started to feel as well when these scans were mentioned. . Although not my child or even blood family, Campbell and her family was part of the broader family. As those came up, I would inform my wife that they were doing a scan for Campbell. We would then watch for the results. It seemed like years for us to know what the results were and the next course of action. All of us on board, all of us bound the spirit of a little girl. I think that is something I learned during all of this. Cancer hurts more than just the patient. It hurts their family, friends, friends of family and anyone that patient touches. Campbell’s reach at this point was large, but it would get even bigger. October’s scan was mixed and some of the tumors had become stable, some disappeared, but unfortunately, one had grown again. The trial was ended and a new approach was discussed. Hopefully the one that would rid her of this disease.
The warrior, a true hero
Bridge to recoveryCampbell’s case was discussed at a conference for CERN (collaborative ependyoma research network) was held around the time of Campbell’s latest scan. Her case was discussed by some of the best doctors out there. The decision to remove the large tumor and try an different radiation was discussed and accepted. They were able to remove the entire tumor once again and she started radiation soon after. This time, being the warrior she is, completed it without anesthesia. During prior sessions of radiation she needed this, but it made her sick. So to help with that she had to take another medicine. This made her, as Robin said, psychotic (her words not mine)! Did I mention Campbell was a warrior? This just proves this girl’s spirit and true self. She was able to move on to staying awake during the MRIs and has really been a trooper through all the bumps. It takes a warrior spirit, a true hero to be brave enough, to face the battle and to fight on. The next phase was to go on atrial at St. Jude. This would require 6 weeks away and then continued treatment at home (if all went well). By this point I had read and cried enough over kids I had never met, never would meet and lived nowhere near. I decided this was enough. It really is time for awareness. When all of these feelings and letters happened I am not sure, but I took it upon myself to write the NFL about having something in September, Childhood Cancer Awareness Month, similar to the October awareness for breast cancer. These kids love professional athletes,look up to them, see them as a role model and strive to be them someday. You know what I got? Thanks but no thanks. Good idea, but… That says a lot about the priorities. Nothing against breast cancer or adult cancers in general, but what about the kids? I came to learn about the true funding of cancer research in America. Barely any to children. Really!? So we resort to cookies, lemonade,and shaving our heads. Wake up and be aware!
Things seemed to be going well in 2013. The St. Jude trial, appropriately named 5FU to coincide with the thoughts we had of the cancer, seemed to be making progress. Campbell went from not eating and really needing the energy and weight to gaining weight back. St.Jude included her in a promotional series for the holidays that will be seen by people all over the country and that spirit was alive and well in her! Scans came back positive for the first time since the recurrence. Finally, this has to be the one, right? The fall came by and my kids, healthy as can be, were preparing for school.Campbell, still fighting but trying to be a little kid as much as possible. The continuous updates about the things she is doing is inspiring! Reading how Robin has been able to raise awareness wherever she goes inspires me to tell Campbell’s story,and I do. Every chance I get I tell her story. At work, the fire department,church, everywhere. If we don’t raise awareness, how will we ever defeat this monster? Greg and Campbell have the awesome opportunity to make a pilgrimage to Loudes, France. This is a once in a lifetime opportunity, but also a spiritual journey. Bathing in the healing waters, praying and being touched with a sense of calmness. How can you not have faith?
Back to school!
As my kids are getting ready to face the struggles of school without the difficulties Campbell faces, she is a true hero for facing them head on with those difficulties. There is yet another brain surgery, but they are to do gene sequencing on several tumors to help target the treatments to help her win the war, not just a battle. Her post-op behavior amazes everyone with her ability to bounce back quickly. No so much the case with adults! School comes back in small steps (hopefully 3 days a week all day)to help her recover as my kids can go every day. They complain about homework and things, these are blessings! As the holidays approach, reminders of what we are able to experience with our healthy families while others experience the holiday without their loved ones for the first, second or more times. When will this end? We give thanks for the blessings God has given us every day, but it’s time to think every day for others going through the madness. It’s not just the patient. It’s the family and friends. As I thought more about Campbell, I realize what I get upset about with my own kids. The stupid little petty things. I need to embrace those. What is important in life is love of family. They carry you when you are weak,support you when you fall and love you unconditionally. I found that I started to tell me own kids that “I love them” as often as I could. This isn’t to say I didn’t say it before, but I never what them to feel unloved or unsure how I felt. It is simple to say and easy to forget.
Well, another mountain to climb
The Christmas season comes to a close and there are celebrations and events Campbell goes to, of course the center and star of the show! Looking beautiful and radiant, inspiring with every step. Early 2014 comes and another brain surgery is needed to remove more tumor growth. The clinical trial is stopped and another approach has to be taken. As the early parts of 2014 seem to be taking a toll on her body, Campbell’s warrior spirit fights harder than I have ever seen anyone fight. Superman, Batman or even first responders are no match! She really is a true hero! March comes and there is again the news that no one on Team Campbell wants to hear, another tumor,another surgery. They go in, remove the entire tumor and she does great. Would you really expect anything less? She is smiling in the hospital as usual and ready to go home and fight some more. Things seem to be returning to ‘normal’.Enjoying seeing her do the same things my kids are doing, but of course, not as fast, not looked at as petty and enjoying them millions of times more. Since it is getting closer to Easter, reading that she is preparing for her first Holy Communion is awesome news! As my own daughter prepared, I remember the sheer excitement and joy she felt knowing she was going to be able to take the Body and Blood. What better way to be healed! Spending time getting ready and seeing the spring pictures just amazes me what she is doing. Because the number of her treatments over the last year or so (during this time she was also diagnosed with a fracture vertebrae, actually several). This limits her abilities, but not her spirit! She fights on and does more than anyone could ever imagine. It is really a blessing to be able to say “I know her!” and to follow her story.My daughter asks about ‘her friend’. She has never met Campbell, but that has not stopped her from being touched by her spirit. I’ve read several stories of people feeling the presence of another. This is sometimes someone they may not even know personally. I feel that presence. I think that the fact that Campbell got this beast was a way for us to become aware, to fight for those that can’t fight and to show us how we should live. Campbell has given me a purpose, a drive and a belief that we need to focus on our children and enjoy them every second, every minute, every day of their lives, no matter how long or short it may be. Why does it have to take a terrible disease to see that? God truly only knows. As Angela Faddis said on her death bed, dying from cancer while her 2 children watched, “Jesus still rose, so we will trust”.
Summer of difficulties
Campbell at BeachAs school ended and my kids were getting ready for camps and the arrival of their new baby brother, we still tracked how our friend was doing. Some setbacks and other things, but all in all it seemed smooth. Sarcastic comments on Greg’s facebook usually meant he was doing the normal routine (commute commits and travel PSAs). News of another surgery or two was not a good way to start the summer, or really a vacation. My awareness had grown to the point we even saw and knew what t meant when a car passed us with a COOP Red Wagon magnet passed us! Awesome! That is why getting awareness out there is important. There was some fun family time, but relief in her brain was needed. Two tumors had grown in size, which by now I knew the chemo was not doing its job. They moved to remove one to mainly give symptom relief. As usual, the Team Campbell rally started. Earlier in the year shirts were sold and pictures started coming in of people supporting Campbell in this newest obstacle. We all just knew that Campbell the fighter would once again prove just how AWESOME she is. They were able to get most of the tumor to help provide relief. The newest round of chemo was decided and it was a trial that would prove to be the last hope. Their insurance said that only one of the two needed drugs would be covered and that the other was not something they considered treatment for this type of cancer. You cannot tell Team Campbell no!The rally cries started and within 48 hours, almost $50,000 and a reverse on the decision happened. Campbell would start the treatment on time! In my heart I knew this was difficult. By this point I had become personally invested in the childhood cancer fight. Anytime there was something sold to help raise funds or awareness, I bought it. I bought Alex’s Lemonade Stand Peeps, we gave money for the same cause at Toys R Us, bought shirts and prayed for a miracle.I knew it was a rough road ahead, but I didn’t know just how rough.
No more sitting on the sidelines
As the summer was beginning to come to a close, reality sets in. Campbell, through all her fighting, positive attitude and genuine love of life, has been sent home on hospice. As I write this sentence, tears, hurt and anger fill my entire being. I cannot explain the profound impact this little girl has had on my life the last five years. Statistics say she is a long-term survivor. Really? In what reality is dying well before your time is that ‘surviving’? God has a purpose. He has a plan that I, better yet we, cannot comprehend. She has been a true inspiration and force to be reckoned with! So, you may be thinking, this is a truly heartbreaking and sad story, so why would you tell me this? Because, the time for sitting and watching is over. It is the time to act. The time to stand up for all those who are too young, too weak and too little to stand up for themselves. How can we spend so much time and effort to make sure the sexual needs of older men are met and virtually give nothing to researching these monsters in our children? It’s not right and it has to stop. Everyone can get involved. You don’t have to give tons of money, but there are ways to help and every dollar counts. Petitions,walks, bake sales, letters and even telling this story again is raising awareness and funds. It’s not just ependymoma. I have, after years of saying I would, registered to become a bone marrow donor. Is that going to become a reality? I’m not sure, but if the call comes, you bet your a** I’m there with a smile on my face! If I can save 1 child, 1 man or 1 woman, it’s worth every bit of temporary pain. Campbell Grace Hoyt is my hero! I am aware because of her. No matter the end, it is just the beginning. When lifted to the Father in heaven, there is no more pain, no more hurt and we are whole again. From the moment the diagnosis became reality, it was just the beginning of my mission to raise awareness in whatever way I could. We are all in this together…Team Campbell!