This GoFundMe is to help raise desperately needed money for my dear friend Glenda and Kevin Musser as their daughter Allyson Musser continues to fight Stage 4 Refractory Neuroblastoma
Ally is the absolute sweetest little girl, and happens to be my daughter's best friend. As I have come to know and love Ally, I have learned of her family's heartbreaking struggles through her endless childhood cancer battle, as well as what's going on behind the scenes financially. I finally got permission from Ally's mom to start a GoFundMe. While we have to pray for medicine and Ally's body to fight the cancer, we can absolutely do something to help pay the bills, provide the family with home and school essentials, and most importantly, fund additional treatment options that are currently out of reach.
This family has been fighting Ally's cancer for a LONG time. Years. And the road ahead... under current treatment, goes on indefinitely.
As I've learned by talking to other families who have suffered through childhood cancer, unfortunately, the love, support, and financial assistance that surrounds them upon initial diagnosis, usually fades away long before the battle is over. So, while friends, family, and colleagues have moved on with their lives, the family is still left fighting and struggling; feeling alone, overwhelmed, and beyond exhausted. Add Covid to that - the isolation, paranoia, interrupted schedules, additional financial hardship, limited doctor availability... and this family could really use a lifting up right about now.
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Diagnosis, From Ally's Mom:
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Ally was diagnosed with cancer at age 3. She had a well child appointment in October of 2017 and everything seemed OK. But, by December, I thought she started to look pale. I noticed her appetite was off. She was lethargic. On and off fevers. Constipation. We kept going back to the doctor's through January as symptoms worsened. By February she refused to walk.
We were transferred to a hematology/oncology clinic as they assumed she had anemia. But an iron infusion did nothing to her hemoglobin. In March of 2018, we were sent to Hershey ER. Her doctor was now afraid she had a stomach bleed, but the waitlist for a gastroenterologist was 6 months. Her hemoglobin was 6.4, and we were told if it dropped any lower, she would be in serious trouble. She received a blood transfusion immediately. She was not improving. Now, due to the refusal to walk, they were looking into juvenile arthritis.
The "what's wrong with Ally" theory kept changing, and I got so frustrated, I said, "somebody needs to figure out what's wrong with my child before she gets poked with one more IV!" So, they ordered a full body MRI...
They found two tumors in her chest, two in her belly, and the tumor was over 90% in her bones.
A bone marrow biopsy confirmed the cancer. Neuroblastoma.
And since it had already spread to other spots, she was automatically at a stage 4 diagnosis.
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Ally's Treatment So Far:
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Ally, at only 6, has already endured YEARS of harsh cancer treatment, and has spent months of her life in a hospital. Chemo. Surgery. Immunotherapy. Radiation. Stem cell transplant. More chemo...
Starting in March of 2018, at Hershey Medical in Hershey, PA, she underwent 5 rounds of induction chemotherapy with a total of 6 different drugs, one being a trial. Each cycle was a 5-day inpatient stay. She rapidly lost weight and became severely dehydrated. She was given an NG tube (which she still has), and it was life-saving for administering the meds. She had no response to the trial chemo, so she was removed from the study, while continuing the rest.
Four months after diagnosis, she had a 9-hour surgery to remove the 2 main tumors in her belly. One tumor was wrapped around her kidney and the other around her adrenal gland.
Ally then endured 5 horrible rounds of immunotherapy, requiring 5-day stints in the hospital. It was hell. She was in so much pain, she required a morphine pump. We were told this treatment helped dissolve the tumors in her chest, however, through the course of treatment, the disease managed to metastasize to her skull.
Next, was 12 sessions of radiation to her head in October and November of 2018. We were told this had absolutely no effect on the tumors.
Then, she suffered through a stem cell transplant with high-dose chemotherapy. Another month-long hospital stay over Christmas. Ally ended up with a liver complication called VOD - she looked like she was 9 months pregnant, and was in serious agony. We were sure she wouldn't survive.
By this point, she was extremely weak and susceptible to illness; we were allowed no visitors, I couldn't even swap with my husband as she was too vulnerable. Full body scans were done in January of 2019. The stem cell transplant did not work, and the cancer had worsened.
Since Hershey had exhausted their "big gun" therapy options, we were sent to seek last-ditch efforts at CHOP (Children's Hospital of Philadelphia - currently the leader in pediatric cancer). CHOP adjusted the diagnosis to "Stage 4 Refractory Neuroblastoma". Meaning... really really hard to treat.
Ally started MIBG Therapy. Essentially, she was injected with a large dose of radioactive dye, where her whole body was radioactive for a few days. I had to limit my contact with her, and care for her in full protective gear. It was a living nightmare. She endured two rounds of this in February and March, each another 5-day inpatient stay. Even upon discharge, she was not allowed close contact with anyone... not even our dog. Unfortunately, scans showed MIBG had no effect on the tumors.
Our doctor at CHOP specialized in this rare cancer, but despite genetic testing and research, came up empty handed. In addition, we found that Ally inherited the BRCA-2 gene which happens to be a common cancer gene found in women with breast or ovarian cancer. This hit hard, as now I'm concerned for my other two daughters later in their lives.
We were then sent back to Hershey for genetic counseling. Due to dire circumstances, Ally's Make-a-Wish to "meet the princesses" was granted and we traveled to Disney in May 2019 for 6 days. Upon returning, I found out that my mom, my brother, and I, all also have the BRCA-2 gene, confirming my concern for my other two daughters.
Her doctor at CHOP and our team at Hershey agreed RIST Therapy - a combo of 4 chemo drugs - was the next treatment option. Each cycle is 4 weeks, 3 of which are at-home chemo, which I administer, and one week is outpatient chemo where we go back and forth to Hershey for 5 days straight. Shortly after starting, she was rushed to the ER with a fever. They found an infection in her line, so she underwent surgery to get a port.
RIST started in June of 2019 and we are currently finishing cycle 26 in August of 2021.
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So far, Ally has remained stable. The problem is... stability can't last forever. This treatment is just managing to keep the tumors at bay. It's not making any progress. Eventually, Ally's body will not be able to take any more chemo. The family is at a point where they must start looking into 6th and 7th options, as well as explore complementary medicine. Anything to start getting ahead of the cancer before it mutates and overpowers the chemo. This means money... that the family doesn't currently have. Money to travel to other doctors. Money to take time off work. Money to purchase alternative options.
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How You Can Help:
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Ally's father is a hard working mechanic, barely making ends meet for his family of 5. Ally has 2 sisters, one entering 3rd grade, one entering preschool. Ally's mom is a stay-at-home mother of three, who shoulders 100% of the burden of Ally's medical appointments, home treatment, debilitating side effects, and constant emergency visits. With the monthly week-long chemo schedule, limited time between school, constant sick days, and her husband's long hours, Ally's mom is finding it impossible to acquire a secondary income.
And finances are tight.
There is a long list of essentials they need for the home, especially with what is expected to be a very harsh winter on the horizon for Pennsylvania. They actually had to sell their only wood splitter a few months ago during a particularly tight time. So, in addition to funds, they are in need of split wood & wood pellets for the winter. They also need basics for this time of year, like school supplies for Ally and her 8 year old sister. All three girls need new clothes. They desperately need a vacation, even just to a campground - an opportunity for the family to make memories. But that is not in the cards right now.
And this is just their immediate need. This does nothing to prepare for what the future holds as far as Ally's cancer. The statistics for childhood cancer are grim. Many treatments are so harsh, they result in secondary cancers down the line. The majority of children end up having long-term, serious health complications involving the heart and other vital organs.
All that to just say, please be assured that every donation makes a huge difference. Seriously. Life changing. It might seem like a drop in a bucket, but when someone is dying of thirst... $50 pays a phone bill. $25 is a meal. $10 is school clothes at the thrift store (her mom is super frugal!). I have personally seen these GoFundMe's majorly lift the financial burden while a family is fighting childhood cancer.
The absolute best way to help is to donate to this GoFundMe (outside of an optional 'tip', GoFundMe only takes a standard online processing fee). Your donation goes directly to Ally's family's bank account, it never even passes through a third party. If there are other ways you can help, such as with wood for winter, or things for the home, or school supplies for 3 young girls, please contact me - Janelle Ketner
It is my pleasure to coordinate extra help for this family!
And please pray for The Musser’s - If you are currently unable to donate, please share Ally's story and accept our sincere thank you for your time and compassion.
Please follow Ally's story on:
Caring Bridge: https://www.caringbridge.org/visit/allysonmusser
Facebook: https://www.facebook.com/allymusser/
I will also post updates here.
Ally is a ball of sunshine, and her family is so very deserving. I want nothing more than to ease the burden of bills and expenses in the coming months, and give them the opportunity to explore additional treatment options and finally get ahead of this disease!
With immense gratitude,
Janelle Ketner