The Savannah Keenen
Family Story

THE SAVANNAH KEENEN FAMILY STORY

My childhood experience was like any other five-year-old girls should be, except for the fact that I had cancer. My cancer was discovered one day while I was at my grandparents' house playing with some old, worn out, rugged toys. I had a high fever of 104.5, so my grandma called my mother to find out what to give me to bring it down. My mom insisted she give me Tylenol, so that’s just what my grandma did.

According to my mom, within an hour my grandma called mom with horrifying news and that’s where I’ll let my mom take over this part of telling our story:

Within an hour of giving Savannah Tylenol she had passed out and lost consciousness!! I raced and broke a few laws speeding over to get over to her Grandma’s house….I even beat the ambulance there!! Apparently, Savannah started having seizures and passed out completely, losing her bladder control and responsiveness. While the ambulance crew thought they should just stay with her and observe her for a bit. I told them we had to find source of this 104 – 106 fever and passing out!! So they took us by ambulance into Lancaster General Hospital ER.

Upon arriving to the ER doctors assumed Savannah’s high fever cause her seizures. Due to being born premature Savannah has chronic lung disease, so they decided to do a chest x-ray to rule out pneumonia as source of fever. I will never forget that look on that doctor's face when he walked into the room with her results. The doctor showed me Savannah’s chest x-ray. As I looked at it in disbelief the doctor said to me "We found a mass in your daughter’s abdomen. There is nothing we can do for her. I suggest you get your affairs in order and call your pediatrician.” At this point I was in tears uncontrollably looking at that mass on the bottom of that chest x-ray. I had to pull myself together the best I could and go in and share the news with my husband and child. We sat on Savannah’s bed and just held one another and cried and gave hugs and kisses. We cried out to God to help us!!

Dr. Laube from Beittel Becker Pediatrics called Hershey Children’s Hospital and had everything set up to see Savannah in the morning to find out what this mass was. At this point Hershey Children’s Hospital became our light of Hope and answer from God. We went to Hershey the next morning and met with Dr. John Neely and Dr. Melanie Comito, both pediatric oncologists. We were amazed that doctors would be so giving of their time to us, as we knew how busy the clinic was and they would have patients there waiting to see them too. Dr. Ciley called us on phone out in waiting room and asked permission to explore Savannah’s whole abdomen. He still was not sure what it was, but he believed he could remove it entirely in one surgery. He said it was imperative it was removed as best chance for survival. The hepatic artery was feeding blood supply to this mass which is why she had a seizure after the Tylenol because it affected the liver. Dr. Ciley said Savannah was only weeks away from dying as her liver would of shut down and all the toxins would of hit her bloodstream pretty much poisoning her to death. Savannah was given a 10% chance of survival. Dr. Ciley removed half of Savannah’s liver, her gallbladder and about 3 pounds of tumor.

After the tumor was excised, it was sent off for tissue sampling to determine if it was cancerous or not by cell type. It came back positive as Hepatoblastoma which is a very rare, sometimes fatal, form of pediatric liver cancer. Liver Cancer is extremely rare in children. Only about 100 children worldwide get it every year and out of those 100 about 95% of them are low birth weight or premature like Savannah was. At that time this cancer was extremely rare around the world, and Hershey was one of the only hospitals that said they could try to help Savannah with her diagnosis. Hershey had only had 6 cases in the past 25 years, and Savannah was only the 2nd one to survive back in 2008. Unfortunately, there are more children at Hershey now that have been diagnosed with same cancer. In most other cases the cancer unfortunately spread to the child’s brain or lungs. We knew if it came back to her lungs Savannah would be in trouble. So that prompted us to go ahead with chemotherapy as planned after surgery to avoid metastasis. While I could go on about how terrible it was to watch our beloved child go through such treatment, I think Savannah can do a better job of explaining what this experience was like for herself.

For the next year I had received a lot of treatment and chemotherapy at Penn State Hershey Medical Center where they could treat my cancer. I received three types of chemotherapy for ten days each month. I also received five blood transfusions, fourteen inpatient hospital stays, cat scans, dye injected into my veins, chest x-rays, pet scans, and bone scans. And on top of all that I also received three surgeries. After removing my tumor, the second surgery was to place a port into my chest. The port was a device placed into my chest to draw blood and give chemotherapy treatments, including intravenous fluids, drugs, or blood transfusions. A needle was inserted through my skin into the port to draw blood or give me fluids. Every twenty days I spent ten days doing all these treatments for one full year. Let me tell you never get used to having to be stuck with all those needles. It was horrifying! As awful as this experience was for me; my parents dealt with the difficult experience of watching me not only go through treatment but also deal with post treatment side effects which my mom will explain.

Towards the end of treatment, they noticed that Savannah started to lose her hearing. She had her hearing checked at Hershey at the end of treatments and she had to have hearing aids at that point. Of course, our insurance denied the hearing aids and they are costly. We didn’t know what we were going to do. We had so much debt already from the NICU stay when she was born premature, that we continue to have today. (We pay a second mortgage payment for loan we took out then).

Thankfully we were put in touch with the social workers at Hershey who put us in touch with the Four Diamonds Fund. This fund did not blink an eye at paying for Savannah’s hearing aids!! We were so overjoyed my husband and I were both crying. We felt as though a huge burden had been lifted from our shoulders. We were so thankful that Savannah would get what she needed to be her best. You can further imagine our thankfulness when they told us the Four Diamonds Fund would be there for Savannah for any medical costs not covered by her insurance until she is legal age!! What a blessing!!

While Savannah was going through active chemo treatment, we heard about THON. We really had no idea what it was. We didn’t want her to go because of all the people and that meant germs. She was so frail, lost all her hair at this point, and was 5 years old and down to only 30 pounds! However, Savannah started chemo in the summer and by the end of that fall she was still begging us to be able to go to THON. She didn’t know what it was either, but nurses told her about water-gun fights, bubbles, dancing on a stage etc. To a 5-year-old this seemed like a dream come true! That October and November of 2008 Savannah took a turn for the worse and her blood cell count really dropped. She was barely awake at all and slept most of the time and required oxygen. We saw our once vibrant child turn frail, very pail and lifeless. We even had our pastor from church visit while we were up at Hershey. We had to prepare ourselves for the possibility that the Lord wanted Savannah back up in heaven with him. I was so distraught I had to stop working and take leave. I never left Savannah’s side. Shawn continued to work and came to Hershey every night and spent time with Savannah so I could get a few hours of sleep. I think what made this time worse was that I had just finished radiation treatments for breast cancer 6 weeks before Savannah was diagnosed with liver cancer. So, our hearts were definitely heavy at this point, but we didn’t lose hope. We kept on for Savannah’s sake. When you meet Savannah, you will understand this better. It is hard to have a bad day or be in a bad mood around her at all. She is definitely our little sunshine!!

A social worker stopped in our room during this time and again was talking about THON and that it wasn’t too late to sign up. I cringed because with me not working how could we even afford to go? Then social worker further explained since Savannah was on active treatment that they would pay for our hotel stay and provide food etc. Savannah was so fragile that day, but this gave her that sparkle in her eyes that had been gone for some time. She kept begging and I finally gave in. We were going to THON 2009!! It was an awesome experience!! I will never forget the look on Savannah’s face at that first THON on her Dad’s shoulders…such awe and excitement. It was the best weekend of her life and ours at that time!! It’s as though the harsh reality of cancer, painful treatments, and therapy were checked outside the doors of the BJC. Inside at THON Savannah got to be a kid again!! She was squirting these huge football players with water guns and they joked around with her and loved it! She got to blow bubble wands, sit on people's shoulders and cheer on with the crowd. She really loved being on stage in a big Irish hat with mardi gras beads too. I will never forget when she came off that stage at THON, she hugged me tight and said Mommy how do you like all my new friends? She was pointing out at everyone in BJC attending THON. I told her they were great friends and they were going to help her kick cancer’s butt!! She laughed and told on me...told Daddy I said the word butt. Ha ha!

By the end of that first THON, we were up in the stands in the BJC getting a bite to eat and sat in the stands watching all the groups on stage that Sunday. We were mesmerized by all these college students that cared about all of us Four Diamond Families. It was such an emotional rollercoaster we had been on for over 8 months at this point. We could definitely “feel the love" in the BJC as Savannah now puts it. However, that first THON we were still in stands during final reveal. Shawn and I will never forget what it felt like to see them reveal the over $6 million raised at THON that year!! Our eyes immediately filled with tears and we were jumping up and down in the stands high fiving everyone around us!! We had no idea the impact of THON until that moment. An awesome moment we will keep with us forever. I have to say thank you from the bottom of our hearts for letting Savannah be a child once again. You gave that back to her that cancer took away from her.

During Savannah’s treatment and afterwards, our family and especially Savannah, experienced how sometimes cancer can socially affect one’s life. At school, kids on the playground wouldn’t play with her and called her names or even a boy. She stopped getting invited to people’s birthday parties, and that all really hurt Savannah’s feelings. In addition to that, parts of our family found it difficult to deal with Savannah’s diagnosis, so they were barely there for her when she needed them the most. I think this part of cancer made Savannah see people openly and honestly with her heart. She always wants other kids to feel included and roots for the underdog. This is why time at any Thon events is so special to these survivors. At Thon she doesn’t have to explain what she has been through or be singled out because of it. Savannah can just be herself.

We enjoyed THON so much we asked to be more involved for next year. So, our social worker put us on list to be paired with an org for THON 2010. They gave us the perfect match with PYRAMID!! We wanted a small org so we could get to know each and every member more personally. PYRAMID first invited us to a spaghetti dinner at one of the members apartments. It was great! We got to meet everyone, have dinner and play games etc. Savannah eventually wrestled all the boys in the group down to the floor. It has become a tradition now ha! Savannah had a great time!! We started making plans for family carnival and other THON events with them over the years. Savannah loves going glow bowling with PYRAMID, having wake overs, going out to eat, attending sports events on campus etc. Now many members of PYRAMID have graduated….but we still keep in touch and try to visit them when we can. Some members of PYRAMID have even gotten engaged and married and are now having their own families!! We really enjoyed renting out the laser tag place in state college to celebrate Savannah being declared Cancer Free Spring 2013!! The great part is there are new members to PYRAMID all time and more for us to get to know. We enjoy making memories with PYRAMID members and having them become part of our extended family.

In 2016 we were paired with a new org called ACF Alliance Christian Fellowship. One of the members was a previous finance committee penpal to Savannah! They had dancers for Thon 2016 but no matched Four Diamonds Family. Savannah volunteered!! She was on the dance floor at Thon rubbing dancer’s calves, cracking jokes and fun dance moves. ACF does all the fun things that Pyramid used to do with our family. They have become part of our extended family too.

Today Savannah is now 16 years old (going on 30 lol) and doing well. This is third year she went to Survivorship Clinic at Penn State Children’s Hospital. So, they are watching her for effects of chemotherapy that can be long-term. So far it is just her hearing affected, however we are not certain she will be able to have children etc. as many chemotherapies make you sterile. Savannah hit her 10 year milestone and is now considered to be in remission. (Mommy too!!) So, we are over the moon about that declaration. Savannah continues to save change and birthday money for THON each year.

Savannah started a Mini-Thon at her school in 2015 and it has grown to other schools and the high school in her district. She started out only wanting to raise $2,500 for kids with cancer. Her first Mini-Thon raised over $6,500!! This year her cumulative total raising funds for Four Diamonds at her school will be over $30,000!! The kids that helped Savannah with the first Mini-Thon at her school are now at her district high school and raised over $64,000 their first Mini-Thon held last June!! Her school has been very supportive in the past with jeans days for THON. We are looking forward to this Mini-Thon spring 2019, at her new Lampeter Strasburg High School too. Savannah is a straight A student and enjoys art, painting, swimming, bowling, volleyball and Minecraft. Four Diamonds also awarded Savannah the Rising Diamond Award back in 20016-2017 school year for all she does in helping local mini-THONs thrive. Savannah already plans to attend PSU someday and wants to be a Physical Therapist to help other kids like her with medical issues recover. Savannah also volunteers at Nursing Home over the summer as an activity aide and takes residents shopping, ice cream trips, plays bingo etc. I will let Savannah close her story out but we are so proud of Savannah and her big heart to give back, and so thankful to THON and the Four Diamonds fund for giving Savannah the chance to live her life and be the incredible person that she is!

I am so grateful for THON and all of the Penn State students involved. To know that they danced for someone like me that they don’t even know touches my heart. My THON organization members from Pyramid and Alliance Christian Fellowship are a part of my family and always will be. THON in my eyes really does equal LOVE!! The help THON volunteers gave my parents at our time of need was wonderful. I was so inspired by THON and the impact it had on my family’s life that I courageously started a mini-THON at my old school back in 2015. Now, the High School McCaskey does a Mini-THON as well. I visit approximately 25 mini-THONS or pre-THON and alumni events sharing my story with the community. I want people to know that we need to support pediatric cancer, find better treatments, and most importantly find a cure!! I am one of the lucky ones... I just have some mild hearing loss, an immune system that is still not 100%, and slow memory recall however, I AM ALIVE & WELL!!! I am so thankful for Thon, Penn State and to be alive and a survivor!! As my Mom and I would say…. we WARRIOR ON!!