On July 11, 2003, our lives were forever changed. Our two year old daughter, Paige, was diagnosed with Stage four Neuroblastoma, a childhood cancer. It was just 8 days earlier on July 3rd when we a small lump on Paige's forehead near her hair line. We figured she had fallen and decided to watch it. Paige has never been a sickly child...not even the flu or an ear infection. When we noticed that the lump didn't go away, so we took her to our pediatrician...that's when our nightmare began. We found ourselves at Hurley Medical Center in Flint, Michigan, the same hospital we both work at. They took an x-ray of her skull to rule out trauma and noticed the frontal bone had some osteolytic changes, so we thought maybe she had some infection in the frontal bone. After two unsuccessful attempts at a MRI (Paige just wouldn't go down with the sedation they gave her), abnormal labwork and under the recommendation our Pediatrician we decided to transfer Paige to Children's Hospital of Michigan in Detroit for a MRI and frontal bone biopsy. Knowing there was a small chance that hematology/oncology was going to be involved, the pediatric oncologists at Hurley, Dr. Inoue and Dr. Onwazurike, have a great working relationship with Children's.
Once we arrived at Children's things moved fast....and what a horrible day it was. We knew we were in trouble when we watched the CT being done...it showed 4 large skull tumors. We couldn't believe these were Paige's films we were seeing. Next, an abdominal ultrasound was done and showed a large adrenal tumor....bingo...textbook for Neuroblastoma. Over the next few days she had a biopsy of one skull tumor, bone marrow aspiration, MRI of the body, MIBG scan, insertion of a broviac catheter (IV for medications), ECHO (ultrasound of the heart to check baseline function since some chemo can cause heart damage), and a hearing test since some chemo can cause hearing loss.
Within a few days we knew the extent of her disease. Paige has the primary adrenal tumor with metastasis to the bone (multiple skull mets, bilateral humerus, hip and femur, and left tibia and fibula), liver, lung and positive left bone marrow biopsy. Non myc-n amplification. It's so crazy to think of all this going on in her little body and no symptoms. We spent five days at Children's Hospital and then decided to come back to Hurley for her chemotherapy (POG #9341).
When we first found out this was cancer, our first thought was to get Paige to the best place for treatment (as I'm sure it is with all parents). But, after investigating and talking with the doctors we found out about the protocols and were told that wherever we go the treatment (protocol) would be the same. Paige is doing great for everything she's been through so far. But, we know there's a rough road ahead. She's completed two courses of chemotherapy. A typical course is approximately three weeks. She'll be admitted on Labor Day for course #3, which will be five days of inpatient chemo with a follow-up CT and bone scan to see if she is responding to therapy.
The "plan", which is subject to change with numerous factors including, lab results and the general physical condition of Paige.... hopefully see a shrinkage of the adrenal tumor, continue with two more courses of chemotherapy (approximately six weeks), repeat the CT, MRI and bone scan and hopefully they will be able to completely resect the primary adrenal tumor in surgery at Children's Hospital. Then, more chemo and aiming for a stem cell transplant around November-December.
While in Detroit we were taken back by a comment by one of the nurses. She said that the last two Neuroblastoma patients she could remember of were conceived via In-Vitro Fertilization. Paige was conceived using In-Vitro...we actually started out with triplets, but sadly lost the other two early in the pregnancy. We brought this to the attention of our doctors, including our infertility doctor. We wonder if there's a link with some kids.
As I mentioned we both work at Hurley. Andy is a Physician Assistant with the department of Surgery/Trauma and I'm an RN in the Neuro Trauma ICU. Even though Andy and I have medical knowledge, we continue to try to soak up as much information as we can...and many of our family and friends have joined the crusade. It's just so overwhelming! We put our faith in God, he will give us the strength and courage to deal with what lies ahead.
We thank our family and friends, including our co-workers at Hurley for their continued prayers and support. We also give big thanks to Dr. Inoue, Dr. Onwazurike, the Chemo Clinic staff, and the 2E Peds nurses, doctors and staff at Hurley for their wonderful care of our family.
Sincerely,
Andy, Sandi & Paige
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