About
Shane’s Future Days is a 501(c)(3) volunteer non-profit foundation whose mission is to raise awareness, research funds and assist families currently battling alveolar rhabdomyosarcoma and other high risk childhood cancers. EIN: 47-2556395
What is Alveolar Rhabdomyosarcoma?
Click below to learn more about this rare childhood cancer and what we can do to fight it.
What does your donation goes towards?
Rhabdomyosarcoma is currently non-curable pediatric cancer and your donation goes directly to the research to help fight it.
We had three hours to sit and mull over the fact that we were headed to oncology about our almost 8 month old baby.
We went to lunch on UPenn’s campus. I used to work across the street and had been to the same place many times. Before we were married, while I was pregnant and every moment of our lives in between. I never thought I’d be sitting there under these circumstances.
We went to the oncology floor and waited to see the doctor. My eyes steadied on Shane. My head thought, “we don’t belong here.”
I knew the doctor. I had worked across the hall from him at my former job. He examined Shane and firmly said that Shane had some type cancer. We needed a biopsy to be sure. It was to be scheduled the following week.
The fact he said it was a cancer didn’t set in right away. We went to the desk to schedule our appointment. The receptionist said that they wanted us to have an MRI before the biopsy.
I looked at her and said they never told us that and she just looked at Shane and me and said “I’m so very sorry.”
Continued
We headed to urology to meet with the doctor. Upon examining Shane and looking over initial blood work, he was discharged with enlarged lymph nodes. The mass wasn’t discussed. It was considered a site of inflammation.
Shane had never been sick. No fever, nothing. The doctor said he looked perfectly healthy….like the “gerber baby.” The beginning of Shane’s everlasting nickname at CHOP.
We were to return within a week to see if there had been any changes in the size of the lymph nodes.
We returned (March 19th) and there was no change. The doctor seemed perplexed and wanted to send us to infectious disease for more opinions.
We met with the doctor and Shane was examined. He was prescribed an antibiotic. Within a day, the lumps appeared to double in size. Whether this was scientifically true, I can’t attest, however through visual eye/photos it looks as though they did.
We returned to CHOP on March 21st. It was a Friday. I always remember things were told to us on Fridays. We were then left to digest scary, anxiety causing news for the next three days, unable to do a damn thing about it, but try and keep ourselves sane.
We met with the infectious disease doctor and she discussed further testing, but Paul spoke up and said what if this is something more serious, like lymphoma. At the time, that was really the only serious disease we knew of.
An appointment was made with oncology. We had to wait three hours.
Shane was diagnosed at 8 months. He lived until 19 months old. Obviously he was not potty trained.
So, we wore gloves to change his diapers.
Our parents wore gloves when they thankfully watched him so we could breathe or be with Chase and Ella.
When he went through his first chemo treatment, he threw up on me. The nurse looked at me and said “I strongly suggest you change your clothes and jump in the shower if you can.”
The beginning. Some are familiar with Shane’s story, but some are not.
It all began with me taking a breather. I wasn’t seeing that much of Chase since he is in school all day and had soccer at nights. Usually my husband or father in law would take him to practice.
On this day, March 4, 2014, my in-laws offered to watch Shane and Ella so I could take Chase to practice. I don’t remember what Paul had that night.
I had just gotten done planning Shane’s Christening which we held on March 2nd.
So that night I went to Chase’s indoor practice. It was for an hour and it was just a quiet way to relax.
When I picked up Shane. My mother in law told me that Shane had a lump in his groin area. It reminded her of a hernia, since my SIL had had one as a baby.
I racked my brain and thought, “how did I not see this?” I had changed his diapers all day and nothing stood out. Shane always had a “fat patch” area, but nothing like the lump I clearly saw now. Guilt.
The next day I made an appointment with his pediatrician. She agreed it looked like a double inguinal hernia. I even remember her pushing the lump upwards. Shane would have to have a surgical consult. It was recommended that we go to St. Chris, but I called CHOP.
We were able to get an appointment that Friday, March 7th.
The surgeon examined Shane and was sure it was not a double inguinal hernia. He ordered an ultrasound. We strolled Shane down to another floor where he laid on a table while the probe collected data.
We returned to the surgical waiting room. The wait was long. Well over an hour. We never really thought anything of it. Perhaps the doctor had lunch, other appointments, the reports didn’t come up in time, etc.
Finally we were called back to the same examining room. The doctor stepped in and he looked unsettled. He faced us both and said. Shane’s lumps are enlarged lymph nodes.
First thought, no surgery?
Then, he said, “We also found a small mass.” He explained, it could be inflammation from the lymph nodes, but he wanted to send us down to urology to get more opinions on the matter. Mass.
Shane was 7 months old.
