Help Beth Battle Brain Cancer
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Hello. My name is Jim and my wife Beth and I are blessed to be the parents of three beautiful and wily little boys. We had a family, and we dreamt of a wonderful future ahead together. Despite rare medical challenges for each of our 3 children we held on to our strength in God and our love of our boys. Our eldest was born with rare Fibrous Hamartomas which he needed two surgeries to remove from his chest. Our middle son, by a miracle and by the capable hands at Children’s Hospital of Philadelphia NICU, survived a rare form of Apnea, which had him turning blue from lack of oxygen and low heart rate. He is thankfully now 4 years old and is in therapy to help us all understand and see the beauty within his new diagnosis of Autism. Our youngest at 3 years big was diagnosed as an infant with a very rare syndrome called Cornelia de Lange Syndrome impacting his brain and physical development. His outlook is positive, and we are keeping an eye on his continued growth, cognitive development, and addressing behavioral difficulties. Through it all, we’ve had the love and support of family and friends by our side, and we have become a strong and resilient bunch. It would take something I could not imagine to shake us all to our core.
In May of 2017 my wife was sitting at the computer working from home when she realized she was unable to read the words in front of her. She worked for hours trying to decipher the pages of resumes in front of her and thought some of the pages were in French. She hadn’t sensed that this was abnormal. Ultimately, in the afternoon, she realized something was very wrong and I rushed home to get her to our family doctor. Our doctor was concerned about her lack of understanding of the names of items in the exam room. “What are you sitting on?” She knew it was a table, but random words would come out instead of what she meant to say. She was sent for a CT scan of her brain within 40 minutes of seeing her Primary Care doctor. With all 3 boys in tow, I waited, corralled in the minivan outside of the hospital armed with MacDonald’s. I kept wondering if it was a stroke, or a crazy migraine. Beth had been saying she was feeling tired lately, so maybe that’s all it was. We figured special needs kids + not sleeping well for about 7 years = typical mom exhaustion; however, our new reality became apparent as Beth came back from her CT scan. The CT revealed a brain mass behind Beth’s left ear and it was big. Big enough to put pressure on her Temporal Lobe and cause her to have a seizure. This was only the beginning.
Beth underwent painful brain surgery in July to remove as much of the 6 x 4 cm mass as Penn Medicine Neurologists could take out. They kept Beth awake during the surgery and needed to keep her talking and answering questions correctly so the doctor could save her ability to speak. No one can understand what that must have been like for her. She prefers not to share too much, but I remember how incredibly upset she was as she came out of surgery. Our fear of Beth possibly losing the ability to speak prompted her to make private videos of her with each child before the surgery; making sure the boys could hear her voice saying how much she loved them and that no matter what, she would always be a part of them in their hearts. We can never thank the team at Penn Neurology and Hospital of Penn Medicine enough for all of their efforts. We made it through surgery with no major complications. The Neurologist was amazed and so happy he could save a major artery in danger around the tumor.
Everyone was pleased with Beth’s speech and cognition returning as she recuperated at her sister’s home in PA over the first couple of weeks. She needed quiet sensory breaks - not unlike a concussion patient needs rest. Being away from our family, while incredibly difficult for our children, proved later to be a necessity. I feel like her positive and calm environment helped her with the next hurdle in all of our lives.
We got the news that Beth’s tumor wasn’t benign as everyone had first thought. It turned out it was actually an aggressive and rare Grade 3 Anaplastic Astrocytoma. We’ll never forget the surgeon’s tone as he told us over the phone, “I’m so sorry. I didn’t expect this. You’re so young. I will get you in touch with your Oncologist. Again, I’m so sorry.” We were reeling. Is that cancer? Brain cancer? How is it not curable? 100% recurrence rate? What is happening? We’d gotten through the surgery and were thriving just 2 weeks out of brain surgery! Beth was walking! Almost reading and writing again! Is this real?
Well fast forward to December. The week before Christmas 2017, feeling blessed every hour for normal family sounds – requests for juice or TV shows, playing Thomas the train, Beth laughing and playing with our boys, Beth is still here. Though she looks thinner and has lost her hair on one side of her head, and occasionally needs to sleep or be alone until mommy feels better, she is still here. Our middle son Grady calls it her “beautiful soft hair” though they also like her wig “new fancy hair” too. After 35 sessions of Radiation to the brain and 45 days straight of Chemotherapy, Beth’s scan showed the therapies were holding the tumor at bay for now. She just started Phase III of her Chemotherapy. They say it’s for 12 months, but the truth is that this will be for the rest of her life, because if we stop, the cancer wins. Phase III is triple the dose of Phase II, but no more Radiation for now means no more rides to the hospital every day from school Moms, Uber or complete strangers offering Charitable rides from our local churches, so many angels helping, so thankful. The amazing love and support is overwhelming and so uplifting to our family. We’ve have also found help through the addition home health aides. Though there’s less fear from surgical issues, there’s more fatigue and less ability to function as a mom with a hundred schedules, IEP’s, Special needs lunches, busses, etc. As Beth moves forward with a kind smile and love in her heart, she knows her memory too has most been affected by medications and surgery.
I remember when Beth was recovering from surgery; we had 28 volunteers doing what she does every day – caring for our sons, cleaning and doing mountains of laundry, making pictures and playdoh figures, and preparing special meals, using sensory diets for our youngest boys. It was eye opening. I’ve learned from my wife how to manage our son’s IEP’s (Individual Education Plans), which toys are okay for nap time, and how to get everyone in the tub...and then out without too much water everywhere. I truly enjoy learning these small details that I previously took for granted. Now our hearts fall heavy not at Beth’s current state, but at her prognosis and the thought of our boys without their mom.
While doctors say the average lifespan of this cancer could be as long as 2 to 3 years, they’ve told us to get our home in order over the next 12 months. I can’t fathom it. My wife is strong. She’s the lynch pin to our family. She’s the Mom. Penn Medicine is working hard to find new therapies and solutions and we hope and pray for more miracles every day for all suffering with Cancer. I try not to dwell on the fact that Beth is going to miss out on key moments in our boys’ lives because my heart breaks at the thought of living without her.
We have been planning as much as possible to secure our family’s future. My employer has been great at giving me what flexibility he can along with medical benefits, and our family and friends have helped us with playdates, rides to appointments, food from the local farmer’s market on our doorstep and more. Our families have also been generous in helping us financially, but as you’d expect, caretakers, transportation to the hospital daily, brain surgery, hotels and all the tests and monthly imaging–even with insurance can cost more than most people ever hope to earn in a lifetime. The next round of treatments entails possible surgery, constant chemo, more radiation, and if all else fails experimental therapies or trials. I took my current job in Pennsylvania and sold our home to move closer to CHOP for our children. It is so comforting that being in PA has allowed Beth closer access to the amazing doctors at Penn. I will do all that I can for our family–even if it means asking strangers for help.
Please, if you can see a way to help our family’s finances with the current and upcoming therapies and surgeries from the 100% recurrence of Beth’s Brain Cancer, we would be so grateful and appreciative. Beth says that the silver lining in all of this is that our sons truly know they are not alone. They have seen and spent time with friends and family that have circled around them in waves. Those around our community have helped us, and each gesture-large or small-has taught us to recognize that we’re not alone in our fight either. There’s an army surrounding us, battling shoulder to shoulder with us, and we are blessed and thankful every single day. We would welcome any assistance you could provide to our family as we continue on this journey.
Thank you for listening to our story and God Bless you all,
Jim, Beth, Charlie, Grady, & Colton
In May of 2017 my wife was sitting at the computer working from home when she realized she was unable to read the words in front of her. She worked for hours trying to decipher the pages of resumes in front of her and thought some of the pages were in French. She hadn’t sensed that this was abnormal. Ultimately, in the afternoon, she realized something was very wrong and I rushed home to get her to our family doctor. Our doctor was concerned about her lack of understanding of the names of items in the exam room. “What are you sitting on?” She knew it was a table, but random words would come out instead of what she meant to say. She was sent for a CT scan of her brain within 40 minutes of seeing her Primary Care doctor. With all 3 boys in tow, I waited, corralled in the minivan outside of the hospital armed with MacDonald’s. I kept wondering if it was a stroke, or a crazy migraine. Beth had been saying she was feeling tired lately, so maybe that’s all it was. We figured special needs kids + not sleeping well for about 7 years = typical mom exhaustion; however, our new reality became apparent as Beth came back from her CT scan. The CT revealed a brain mass behind Beth’s left ear and it was big. Big enough to put pressure on her Temporal Lobe and cause her to have a seizure. This was only the beginning.
Beth underwent painful brain surgery in July to remove as much of the 6 x 4 cm mass as Penn Medicine Neurologists could take out. They kept Beth awake during the surgery and needed to keep her talking and answering questions correctly so the doctor could save her ability to speak. No one can understand what that must have been like for her. She prefers not to share too much, but I remember how incredibly upset she was as she came out of surgery. Our fear of Beth possibly losing the ability to speak prompted her to make private videos of her with each child before the surgery; making sure the boys could hear her voice saying how much she loved them and that no matter what, she would always be a part of them in their hearts. We can never thank the team at Penn Neurology and Hospital of Penn Medicine enough for all of their efforts. We made it through surgery with no major complications. The Neurologist was amazed and so happy he could save a major artery in danger around the tumor.
Everyone was pleased with Beth’s speech and cognition returning as she recuperated at her sister’s home in PA over the first couple of weeks. She needed quiet sensory breaks - not unlike a concussion patient needs rest. Being away from our family, while incredibly difficult for our children, proved later to be a necessity. I feel like her positive and calm environment helped her with the next hurdle in all of our lives.
We got the news that Beth’s tumor wasn’t benign as everyone had first thought. It turned out it was actually an aggressive and rare Grade 3 Anaplastic Astrocytoma. We’ll never forget the surgeon’s tone as he told us over the phone, “I’m so sorry. I didn’t expect this. You’re so young. I will get you in touch with your Oncologist. Again, I’m so sorry.” We were reeling. Is that cancer? Brain cancer? How is it not curable? 100% recurrence rate? What is happening? We’d gotten through the surgery and were thriving just 2 weeks out of brain surgery! Beth was walking! Almost reading and writing again! Is this real?
Well fast forward to December. The week before Christmas 2017, feeling blessed every hour for normal family sounds – requests for juice or TV shows, playing Thomas the train, Beth laughing and playing with our boys, Beth is still here. Though she looks thinner and has lost her hair on one side of her head, and occasionally needs to sleep or be alone until mommy feels better, she is still here. Our middle son Grady calls it her “beautiful soft hair” though they also like her wig “new fancy hair” too. After 35 sessions of Radiation to the brain and 45 days straight of Chemotherapy, Beth’s scan showed the therapies were holding the tumor at bay for now. She just started Phase III of her Chemotherapy. They say it’s for 12 months, but the truth is that this will be for the rest of her life, because if we stop, the cancer wins. Phase III is triple the dose of Phase II, but no more Radiation for now means no more rides to the hospital every day from school Moms, Uber or complete strangers offering Charitable rides from our local churches, so many angels helping, so thankful. The amazing love and support is overwhelming and so uplifting to our family. We’ve have also found help through the addition home health aides. Though there’s less fear from surgical issues, there’s more fatigue and less ability to function as a mom with a hundred schedules, IEP’s, Special needs lunches, busses, etc. As Beth moves forward with a kind smile and love in her heart, she knows her memory too has most been affected by medications and surgery.
I remember when Beth was recovering from surgery; we had 28 volunteers doing what she does every day – caring for our sons, cleaning and doing mountains of laundry, making pictures and playdoh figures, and preparing special meals, using sensory diets for our youngest boys. It was eye opening. I’ve learned from my wife how to manage our son’s IEP’s (Individual Education Plans), which toys are okay for nap time, and how to get everyone in the tub...and then out without too much water everywhere. I truly enjoy learning these small details that I previously took for granted. Now our hearts fall heavy not at Beth’s current state, but at her prognosis and the thought of our boys without their mom.
While doctors say the average lifespan of this cancer could be as long as 2 to 3 years, they’ve told us to get our home in order over the next 12 months. I can’t fathom it. My wife is strong. She’s the lynch pin to our family. She’s the Mom. Penn Medicine is working hard to find new therapies and solutions and we hope and pray for more miracles every day for all suffering with Cancer. I try not to dwell on the fact that Beth is going to miss out on key moments in our boys’ lives because my heart breaks at the thought of living without her.
We have been planning as much as possible to secure our family’s future. My employer has been great at giving me what flexibility he can along with medical benefits, and our family and friends have helped us with playdates, rides to appointments, food from the local farmer’s market on our doorstep and more. Our families have also been generous in helping us financially, but as you’d expect, caretakers, transportation to the hospital daily, brain surgery, hotels and all the tests and monthly imaging–even with insurance can cost more than most people ever hope to earn in a lifetime. The next round of treatments entails possible surgery, constant chemo, more radiation, and if all else fails experimental therapies or trials. I took my current job in Pennsylvania and sold our home to move closer to CHOP for our children. It is so comforting that being in PA has allowed Beth closer access to the amazing doctors at Penn. I will do all that I can for our family–even if it means asking strangers for help.
Please, if you can see a way to help our family’s finances with the current and upcoming therapies and surgeries from the 100% recurrence of Beth’s Brain Cancer, we would be so grateful and appreciative. Beth says that the silver lining in all of this is that our sons truly know they are not alone. They have seen and spent time with friends and family that have circled around them in waves. Those around our community have helped us, and each gesture-large or small-has taught us to recognize that we’re not alone in our fight either. There’s an army surrounding us, battling shoulder to shoulder with us, and we are blessed and thankful every single day. We would welcome any assistance you could provide to our family as we continue on this journey.
Thank you for listening to our story and God Bless you all,
Jim, Beth, Charlie, Grady, & Colton
Organizer
Jim Dieffenbach
Organizer
Harleysville, PA
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