My name is Sarah and I’m here to tell a story about my child and her battle with Cancer.
Jersey’s home consisted of me, her younger sister Britain Charlize who was just 5 at the time and her older brother Brandon who was pushing 13. As a single mother, I do my best to pay the bills so I usually had an occasional roommate to occupy the extra room in our home. Up until the moment we received the news there wasn’t a single indication that Cancer was manifesting inside her young body. We had not one tell-tale sign. We’ll never truly know “when” it began on the inside.
We got to experience “Life“ changing in an instant and we didn’t even have time to brace ourselves. This is the story of how we responded and how her body seemed to fight this disease. Jersey Lynn Barfels was diagnosed with Stage IV Wilms Tumor on 11/1/11 when she was 7. Wilms’ tumor is the most common form of kidney cancer in children, accounting for 6 to 8 percent of all childhood cancers. About 500 new cases are diagnosed in the USA per year. The exact cause is not known, although it is thought that in 10-15% of affected individuals, one or more mutated genes create a predisposition to Wilms’ tumor. Typically, this disease first appears when the affected child is about three years old. Wilms’ tumor can often be treated successfully, depending on the stage of the tumor at detection and the age and general health of the child. Source: http://www.m.webmd.com/a-to-z-guides/wilms-tumor.
Jersey was a pretty healthy child for most of her childhood. We had a scare early on when her appendix ruptured when she was only 4 but besides that and she only had illnesses like the flu and occasional strep. But never anything that would make us think that at 7 she would be diagnosed with Cancer. In my eyes she had the “best” cancer we could get because the success rate of her treatments was about 90%. However, I have met a couple other kids that had Wilms and unfortunately they were the other 10%. I knew it could happen and I know were never out of woods. But I stayed in the right mindset and knew that defeat wasn’t an option. I always told her “don’t worry til you have a reason to!” Otherwise worry takes away optimism and you’ll lose your drive! What’s the sense in worrying and then everything ends up working out? You just wasted a lot of time and didn’t have fun while doing it!
Jersey's kidney was full of cancer and she had spots on her lungs. It took 90 minutes by ambulance from Waterloo, Iowa to Iowa City’s University of Iowa Children’s Hospital where we would drive for the next 6 months for all her chemo/radiation. Two days later she had surgery to remove her cancerous kidney and biopsy her lungs. She made a miraculous recovery. She never skipped a beat.
We never told her she had “cancer.” We only referred to it as a “tumor.” Both are basically the same thing to adults but most kids are clueless. One doctor didn’t get the “memo” that nobody was to mention the “C” word and blurted it out while following up a couple days after surgery. I asked Jersey if she had heard anything that day that she hadn’t heard before hoping she had missed it. She said “Yes. That I have cancer.” I asked her if she knew what that meant. She said “that I’m gonna lose my hair.” It broke my heart. I didn’t know what to say but didn’t have to think about it long because she had a better way to look at it. She said “Well…. At least I won’t get Head lice!” Atta girl Jersey. I knew we were gonna be a great team.
On November 16, 2011 she became ill. She said her belly hurt on the side where she still had one kidney. I called her oncologist and they told us to make the trip. As we were leaving to head back to Iowa City to have it checked out she told me she felt better. She knows her body. Always has. I asked her if she was sure she didn’t wanna go have the doctors take a look. She told me “yea because what if at like 12:30 I get that pain again?” Off we went. They determined she was “full of crap”;) which is typical after her type of surgery. I had given her a laxative before we had left earlier that evening and hoped it would do its job. We were staying at the Ronald McDonald house that night because we had a scheduled appointment the next morning. She was using the restroom and called me in there. I realized the laxative was working. But a few moments later she began vomiting. I looked at the clock and it was 12:30 on the dot. I knew she had a gift to feel certain things. That wasn’t a coincidence. We went back to the hospital and they wanted to get an Ultrasound of her ovaries and needed her kidney to fill in order to get it successfully. Over 24 hours later and she still hadn’t used the restroom. We realized she was in Acute Renal Failure. 72 hours later and the doctors were scratching their heads. Her surgery went well. There wasn’t an infection. It didn’t make any sense. They decided to begin dialysis.
We took her to the ICU to begin dialyses and she was given her first round of chemo. It didn’t take longer than the flu shot. I didn’t understand any of it but kept moving forward. There wasn’t time to ask questions. She was very sick and the doctors couldn’t make her better. I went to prayer instead. I was reading the book “Heaven Is Real” that evening and in the pages they talked about “prayer in numbers.” I was still learning about my faith and had ran out of options here on earth. The Doctors couldn’t even help her. By the time I went to bed it was now my 31st birthday. I had put on social media three words… “Pray for Pee.” It was all I had…. It was one hour later that Jersey woke me up and told me that she needed to use the restroom. I flagged the nurse in and laid back down. And then I heard it! The sound of confirmation! She Peed!!! Her kidney has cooperated ever since that morning. We just have to make sure she’s always hydrated. Doctors like to give their hands and medicine credit for curing an illness. But they had even shared with others in practice her testimony. They knew it wasn’t anything they had done. Jerseys regimen of chemo lasted 31 weeks. All were once a week outpatient at the clinic. She was given Dactinomycin, DOXOrubicin, VinCRIStine and Etoposide for outpatient. One of the first symptoms we noticed was peripheral neuropathy due to the VinCRIStine which caused “foot drop” and so she wore braces to prevent herself from falling down and underwent physical therapy because she began to “tip-toe” like a ballerina. She still has a small habit of dancing around on her toes because of it;) 4 out of those 31 weeks required her to be inpatient at the Children’s Hospital because the regimen required her to have Cyclophosphamine and lowered her blood counts to a dangerous level.
Once we were home she had to have injections of Neupogen. It is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing therapy that causes low white blood cell counts. Neupogen is used to prevent infection and neutropenic (low white blood cells) fevers caused by chemotherapy as well. At the age of 7 she was administering her own injections. She was my hero;) She spent countless days in the hospital due to fevers. She had a port for her chemo and we always had to assume the fever was the result of an infection of the central line that goes to her heart. So we had to always treat it as an emergency even though it ended up always being viral;) It was a mandatory 3 days inpatient but if her blood counts weren’t high enough it could sometimes keep us there for 7-10 days. Aside from chemo, she had to take two weeks of radiation that resulted in little to no side effects. She was on her way to conquering her battle. Of course it was hard for any parent. But the way she carried herself through her journey made it seem easy at times. The bad times didn’t seem too bad and didn’t last very long. When she was down, I lifted her up and when I was down, believe it or not she got me through my own storm. We were an A-team;)
That school year she missed 75 days of school. We got a letter at the end of the year telling us her reading score that ranked in the top 4% of the nation. Her teacher and staff at the school were amazing and she was able to do a lot of her school work at the school up at the hospital. She was resilient just like all children and rolled with the punches. Cancer didn’t interfere with her education because she learned how to study around it. She was a true fighter and seeing her achieve her health back almost effortlessly was mind boggling to me. You almost wanted to ask her how she does it. But you don’t wanna bring it to her attention. If a kid falls and you know it had to hurt. You’re never supposed to coddle the child and nurse the wound. You just find a very quick way to divert them from the pain. ” Look at you. You’re tough. It’s ok, you’re a big girl. Yay!!” Diversion and I became really good friends very early on and we made a great struggle seem way easier than one could ever have imagined. Negative thoughts create negative feelings and when you’re too busy having fun your mind doesn’t have the time or space to think about things that suck. She was too busy enjoying the things around her. I didn’t allow her to slow down much to allow downtime to think about how “sucky” this situation would be if we were stripped of all the fun I had placed around her.
At the time I dated a musician, Eric Taylor. He played bass for the band Saving Abel and is still with them out on tour today;) At the time he was off tour and it allowed him to be alongside us the entire duration of her chemo besides taking time to see his daughter in Mississippi. He was such a big part of her journey and the rest of the band handled it like any family would. God gave us tools. They were big ones;) Between prior connections and Eric reaching out at the time. Other bands were aware of her condition and were very supportive as well. The Bret Michaels Band performed the night of her benefit in our town and Ray from the band made an appearance despite having to bring his crutches along for his brand new bum leg. We auctioned off a hat of Bret’s and it brought $750. He auctioned off a guitar at his show that night and the proceeds went to us as well. Bret truly has a big heart and I’m forever grateful for his generosity! There were countless people rooting for her and it made my heart smile. I knew it was part of her healing process. The diversion was going a long way.
The day before her benefit Pop Evil played in our town and they all wore “Jersey” shirts in support of her. I know that they aren’t any different than us but I also dated a music man and I know it takes musicians with true hearts to take time out of a busy schedule to support anything. Again, I am forever grateful for this act of kindness. Something so small helped us go a long way! Anytime Pop Evil was a short road trip away I made sure the girls got to be there. Even though they love the pop music I made sure I let their ears hear what I liked as well. And in time they caught on. Jersey also has a big brother and there were times the band welcomed him to a local show when we weren’t able to make it. They truly were becoming great friends to us. But the friendship to tell about in this story is the one between Jersey, Britain and Matt from the band. It just worked its way into their lives and grew into something beautiful. He took the time to enjoy their company and wasn’t afraid to show them or anyone else around him that he was really just a big kid;) Here’s a small list of fun they had: *Bubbles *Sparklers *Sidewalk Chalk *Model Airplanes *Water-guns *Hopscotch *Four Square *Invisible Baseball ( includes baseball field and lacks a ball or any gloves) *P90x after the show between buses *Ice Cream and lots of it *Rides at the Fair *Pulling loose teeth *Matt using the girls for weights *Popcorn angels *Writing silly notes to the bus driver *Jersey and Brit teaching Matt their dance moves to their original hit “We just wanna party!” *Rolling down hills *Watching movies after the show in the back lounge *Laughter and lots of it!!!! *Hugs!!!!!! Not to mention one time while we were down South and the band had a show in town, I opened my home for them to shower and such.
The girls came home to a note from Matt on their beds telling them that he missed them;) The bond between those three is absolutely amazing. Being a single mother, I got to sit back and see it grow and I cherished each memory being made. I know exactly how busy he is as a musician. And I also know there’s adult fun all around yet you’re playing four square with my children and only they asked you to;) So to say it was heartfelt isn’t giving it enough credit. To see that all the fun we had back then is the inspiration behind Star Treatments makes the idea that much more amazing. Fun not only fought the Cancer but it gave Matt a vision for countless others.
Our fight against Cancer is allowing the opportunity for so many more to claim their victory as well. As of July 18, 2012…. Jersey has been Cancer Free! She had follow-up’s every 3 months for the past 2 years and now she is set for follow-up’s every 6 months. When we reach the 5 year milestone she will be considered to be in complete remission! We still run tally marks on her random Dr. Appointments. You can’t assume it’s just the flu or random aches and pains. You have to walk with extreme caution in times of sickness because we know our lives could possibly change in an instant like it did once before. Looking at her today, you would never be able to tell she had cancer. She acts like a normal 10 year old girl on the outside but inside her soul is old and wise and so we definitely have our struggles.
We still have a lot to learn about when it comes to coping after cancer. But we’re well aware and learn when we fall to brace ourselves for the next one. Unless you’ve dealt with cancer on a personal level you don’t see much beyond the hair growing back. But the truth is…the cancer aftermath can be harder than the storm was. We can only accept that those struggles in the past can put small dents in our future and work them out when that time comes. I can say something today that I never would have imagined I’d be able to say back in my old ways of thinking….. Cancer changed us for the better. We found our reason for being here. We’re ready to help show others what helped us. We know how precious our happy moments are and some days we even laugh at the hard times because at least we’re alive to have bad things happen. We’re all here for a purpose. I smile knowing we found ours. ;)