Today is the last day of childhood cancer awareness month. As you know, it’s everyday for our family and so many other families across the globe. We don’t need a designated month to know how unfair a childhood cancer diagnosis can be.
On Tuesday, March 24, 2014, Shane was sedated for the first of many times, to undergo an MRI. Paul and I weren’t completely convinced that Shane had cancer at this point. We were not allowed to be with Shane during the MRI, just a kiss good-bye as he was wheeled away under the influence of versed so he could tolerate the test.
During that time, I met with the urologist. More blood tests were ordered and I wanted to know the outcome. Everything was clean. No changes, no other indicators of disease. We both discussed it and I had convinced myself that he was suffering from an autoimmune disease since they can be unique and difficult to diagnose.
I returned before Shane came back and shared the conversation I had with the doctor to Paul. We left the hospital in high spirits.
At 4 p.m. my cell phone rang. Paul answered it. He answered all the horrible calls. The ones telling us news we couldn’t stand to hear. He looked like someone punched him the face. He repeated the words the doctor told him on the phone. I lost it. I don’t think I’ve ever been so out of control of my own self. I’m not even sure I remember how I came down from that moment.
The next day we arrived in the surgical center waiting room. Shane was scheduled for a biopsy to confirm his type of cancer.
My baby had cancer.
We sat in a waiting room filled with circular tables with chairs. We sat and waited until the woman in charge came to update us on Shane and his procedure.
He was in recovery. The doctor wanted to talk with us. They biopsied the lymph node, etc. It came up blue. It was in fact cancer.
Confirmed.
We spent our first night on the oncology floor that night as Shane recovered from his procedure. It was my first of many nights there by myself without my family. The first of many nights where others had to prepare Chase and Ella for school. putting them to bed, waking them up, preparing breakfast, making their lunch, etc.
So, yes when your child is diagnosed with cancer, it affects your whole family. It changes everything.
*Note: Any missing dates for the month of September are posted on our FB page: https://www.facebook.com/HelpShaneFightCancer/
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.
Deep thoughts…two parts
Every day I begin thinking I’m going to do my daily childhood cancer awareness post first chance I get. That chance usually is when Will goes down for a nap. Then the side tracking happens.
I have no short term memory. It’s terrible. I live with post-it notes or lists that I usually forget when I leave the house. Somedays I rock and am on top of everything, but most times I walk into a store and forget why the hell I’m there.
People will ask me things. I forget. I leave letters, invitations, thank you’s on the kitchen desk forever until I either give up or mail them. i’m bad on replying to emails or texts too.
I have good intensions. I’ve tried brain exercises, sleep, you name it. It’s just a really crappy side effect from our cancer journey.
So, here I am posting now.
But, when I go to write the topic, what I started this morning completely changes. Which brings me to my part 2.
We received so much support from strangers, friends and family near and far. We never forget all you did. We remember the cards, the gift cards to restaurants, gifts to the kids, the meals that were personally delivered by friends from college, high school, my mom’s group, neighbors, food sent from friends across the country, personal notes, visits at the hospital and everything in between.
If we never sent a note of thanks, please know it wasn’t because we didn’t care or didn’t acknowledge. We did, we still do and still remember. Thank you all so very much. Time got away from us and at times I would post a words of thanks, but to be honest sometimes it was all so overwhelming. So, thank you to all of you for your support then, now and going forward. We honestly couldn’t have gotten through and continue to grow without your support.
It’s Sunday. It’s Fall. It’s Football.
Since 2009, more than $18 million has been raised for American Cancer Society (ACS) through their NFL partnership.
For every dollar that is donated to ACS (including Relay for Life) only HALF A PENNY goes to all childhood cancer. There are about 120 different types of childhood cancer. Meaning-
For every $10,000 donated to ACS (this includes Relay for Life) each individual childhood cancer only gets .41 cents.
Think before you donate to some organizations claiming to help “cute bald children.” It’s not always the whole truth.
Shane was worth more than HALF A PENNY.
#SFD #HelpShaneFightCancer #letsdobetter #ARMSaware
The kids are back to school and now there are the sniffles and the coughs. I walk into the school and it’s the same sound everywhere.
I think to myself…how did we make it? How did I have a preschooler (totally germy), an elementary school child (at least they use hand sanitizer) and a child who had cancer?
Shane was only inpatient twice in his whole cancer journey for a fever because he caught something.
It’s a miracle in itself.
So, when you see those memes about not kissing babies….don’t kiss the babies. If your kids are sick…don’t send them to school. Honestly, just wash your hands.
When you come in from outside, before you eat, etc. I’m sure your mother told you this growing up.
The thing is….when your child has cancer all these things are so important.
They have no immune system. It’s completely wiped out by the chemo. You live by the count numbers…ANCs are the most important.
The end result is either a transfusion ( add an extra 4 hours on to your average trip for that) or hospitalization based on ANCs and fever.
This can also lead to delays in treatment. Pretty serious stuff when the chemo is the only thing killing these tumors.
So, if you know someone undergoing treatment..child or adult and they aren’t attending parties, go easy on them. Sometimes there are other bigger things going on behind the scenes that they don’t necessarily want to talk about.
We had lived our life based on Shane’s counts. Certain chemos made him EVEN MORE nutrapednic (low WBC). We made decisions on whether we attended events based on these. It wasn’t personal, it was what it had to be.
*This pic of Shane was a few hours before we rushed down to CHOP because his temp was over 101.4 (the standard in cancer patients for an ER visit). He had RSV. We remained quarantined for a week. We couldn’t leave his room. It was also the first week of December.
We missed my nephew’s 1st birthday and our family getting their first real tree.
#SFD #HelpShaneFightCancer #letsdobetter #ARMSaware
We tried to spend as little time at CHOP as we could. The doctors and nurses were amazing at helping us do this.
Shane was on your typical rhabdomyosarcoma maintenance protocol (yes, it’s only a “maintenance” one that exists for this type of cancer).
One week required a 5 day stay at the hospital because he would be receiving chemo for 5 consecutive days. Instead of staying, we would drive back and forth everyday. There was one chemo that we had to stay overnight for. He needed to receive a Neulasta shot 24 hrs after it. This chemo was also the harshest. Aren’t they all really??? I can’t believe I even wrote that.
Shane was so nosy. He wanted to see the nurses, the patients, check out the art room, get toys, play with toys, go to music class, go for a snack….and REPEAT.
He never napped. I guess he wanted to just live life.
I often think of this. Especially when I’m dog tired and wishing for Will to take a nap. I remember those moments I got to spend with Shane. I was so tired then, but I never FELT it. I just embraced it. No regrets. Ever.
These were Shane’s favorite monkeys. We visited them on our laps on the good floor….”south.”
Yes, he dressed himself too.
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