I'll start off by sharing a bit about us. My hubby (Kevin) and I have 3 daughters Olivia who will be 8 next week, Allyson will be 6 next month and Stella who is 3. When Allyson was diagnosed, she was only 3 1/2, Olivia was 5 1/2 and Stella was only 9 months old.
We all thought that Stella would be our medical child because at 3 months old she had her first case of pneumonia, then again when she was 7 months old (except this time she had Respiratory Syncytial Virus) making it difficult to breath. I remember spending 5 days in the hospital (January 2018) with Stella thinking that was so long and terrible, not knowing what it was preparing me for in a few months.
Our fight began in March of 2018.
I had been tracking what seemed like a laundry list of symptoms Ally had been experiencing over a period of time. We were in and out of the pediatrician's office with no answers. We were then transferred to a hematology/oncology doctor who thought she had iron deficiency anemia, who then ordered an iron infusion at Hershey March 13, 2018. It was later that evening when I received a call from that ordering doctor who told me to take Ally to the Hershey ER because he feared she may have a stomach bleed. You see the problem was, he thought she needed to see a Gastrointestinal doctor and the wait list was over 6 months long, but by going to the ER would get us to see one sooner.
I remember carrying her into the ER that night, because she was not physically walking at this point. Her hemoglobin was 6.4 and she required an immediate blood transfusion. We saw the Gastroenterologist and chatted a bit. I mentioned to him that "I did not believe she had a gastrointestinal issue; my sister-in-law has Crones disease and cannot make it to the bathroom in time, and yet Ally has not pooped in almost 4 weeks!" He then had us see a Rheumatologist, because they then thought it was Juvenile Arthritis since she wasn't walking and seemed to be in pain. I broke down when meeting with this doctor, I was so very frustrated. I believed something was seriously wrong with my child and no one could tell me what it was. In talking with her she FINALLY ordered a full body MRI. It was this imaging that found what they believed to be Neuroblastoma. The very next day she had a bone marrow biopsy, which confirmed the original diagnosis and because her cancer had spread it was labeled Stage 4 Neuroblastoma.
At diagnosis they found 2 tumors in her chest, 2 tumors in her belly and the tumor was over 90% in her bones. Allyson however has not really followed the "normal" course of treatment, because her specific type has been stubborn to treat. To date Allyson has endured.....
5 rounds of chemotherapy, only to be told it wasn't working like they had hoped
5-6 total rounds of immunotherapy
a 9-hour surgery to remove the two main tumors in her belly (1 in her adrenal gland, and the other wrapped around her kidney)
Somehow through the course of treatment the tumors in her chest dissolved with treatment, however her head (skull) became a problem, they had found 2 spots on the front of her head.
12 sessions of radiation to those spots on her head
Stem Cell Transplant, which required us to be inpatient for 1 entire month (December 2018). Where she developed a severe case of VOD, which is a complication involving the liver and she looked like she was 9 months pregnant.
We then had scans done in January 2019 and we found out that not only did the Stem Cell Transplant not work, but that her cancer was progressing with a new spot on the back of her head. And because we had tried all the "Big Gun" therapy options Hershey had to offer, we were then transferred to CHOP to try a therapy that Hershey was not set up for called MIBG therapy. Her cancer had a new label going into a new hospital, it was now......Stage 4 Refractory Neuroblastoma--which basically means hard to treat.
This therapy was a whole new level of terrible, essentially Allyson's whole body was radioactive for several days and I had to limit my contact with her while she was receiving it and when we were discharged. She endured 2 rounds of this, before more scans. Not only did this treatment not work, but our doctor there was testing her bloodwork to try and find other treatments for her and came up empty handed "treatment-wise". She instead found out that Ally inherited the BRCA2 gene, which means she will most likely experience Breast and/or Ovarian cancer later in life. We were also told that CHOP had no other treatment options, so we were transferred back to Hershey now summer of 2019.
After returning to Hershey we then found out that I too along with my mom and my brother are all carriers of this cancer gene. Leading me to have a full hysterectomy just a few months ago. --my grandmother had ovarian cancer and that is where all this genetics comes from!
Allyson began a therapy called RIST (it stands for the 4 chemo drugs she is taking). Each cycle is 4 weeks total. 3 weeks in home chemo, where I administer the drugs followed by 1-week outpatient chemo where she receives an IV chemo. We are now in what's called maintenance, we are maintaining her cancer, as this is the only thing that has held her cancer at bay. Allyson is currently on either cycle 14 or 15 of this kind of therapy and we are basically hoping and praying that her body can keep tolerating it, because I'm told the only other treatments out there is phase 1 trials, which we aren't even considering an option since they haven't been tested yet.
We will forever be grateful for our “second family” at Penn State Children’s hospital. Even before we knew what was wrong with our daughter, the staff and doctors have been nothing short of a blessing. Then after her diagnosis we met even more gentle, patient, kind, and caring human beings and it was a comfort to know they were also caring for me as well as our daughter! The minute I met our Four Diamonds social worker and was sobbing about how we have no idea how we are going to be able to swing such a diagnosis as childhood cancer.....she then tells me the brief story of the Millard family and ALL about how Four Diamonds is here to help....for the long haul!!!
You have no idea what a burden was lifted with those words! No, my child was not healed, and yes, she was still suffering, however we knew she would be well taken care of. I wasn’t sure exactly what all Four Diamonds was about, until I realized all these supporters such as Child life, music therapy, art therapy, Psychologist, and chaplain as well as our social worker were all positions placed in the hospital for family’s like ours. This alone is huge, but they go above and beyond to also cover ALL the medical treatment costs for Allyson 100%.
It’s also a blessing to watch Ally form positive relationships with all sorts of hospital staff, she is constantly making them all smile with simply her presence!!
Sometimes looking back I'm not sure how we even made it through, but then looking forward isn't great either. I am still, however holding onto hope, and praying that one day this will all be behind us. And Allyson can get back to the life she so missed out on, the life that cancer has robbed her of.