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.
How to answer the question, “How many kids do you have?”
Seems simple right? You, just list them off.
How do you answer that question when one is missing? They were physically here with you. Laughing, crying, a vital part of your family?
Most of the times it’s strangers who ask. It doesn’t go much further than…what are their ages? Boys or girls?
However, at times these people who ask are neighbors, new acquaintances, etc.
There in lies the uncomfortableness of it all. People either accept you or ignore you after they find out. I haven’t found it to be any different…unfortunately.
The sibs speak out
September. It’s a tough month for any kid. They go back to school after what seems like a brief moment of freedom.
For Chase and Ella, it’s not just the start of a school year, but also childhood cancer awareness month AND their new brother’s birthday month.
While Paul and I sort through our own feelings, I thought it was best to just ask them how they are handling it.
School is going great. Both love their teachers and their classes…win win!
I ask, well how else do you feel this month? In unison they reply, “sad.” “Why is that?”
“We miss Shane and Will reminds us of that.” Both look at each other and Chase explains that Will is just like Shane in that he looks like him (and himself) and he loves to play.
Chase said Will is always up to chasing him around.
“Will plays with me like Shane used too.”
Ella immediately starts to tear up. She says, “He steals my dolls.” I laugh. She looks at me and says, “you know!”
I do know. Shane loved to tease Ella. He used to grab her dolls and run laughing his high pitched little giggle. He used to take the clothes out of the bin faster than she was putting them back in.
Most of all, he took her beloved “Georgie.” Will does too…all in good fun.
We talked some more and they too realize the bittersweetness of celebrating Will’s birthday. They are both super excited, but with a twinge of sadness.
We discussed other thoughts and feelings a bit more about the addition of Will to our family, how we grow together with Shane by our side and the healthy balance Paul and I have created for our family.
Chase and Ella both said that they never feel like we put the memory of Shane higher than themselves.
Whew. We are doing it the right way.
We want them to always remember Shane and know that the foundation and the work we do is very important.
We never want them to FEEL as though they are not as important.
In the world of childhood cancer, I call that a win.
It was a beautiful day, albeit a bit humid and unseasonable hot….more than I expected.
I’ve been spending the days as busy as I can be. It helps take my mind off of wandering thoughts and nagging ones.
This week, we will celebrate Will’s 1st birthday. It’s been an incredible year with a remarkable little man. So much about him reminds me of Shane and yet he is his own person.
This is the tricky part. We are blended.
Our life with our child (literally a baby) who has cancer.
Our life with the loss of our child to cancer.
Our life with the loss of one child and the blessing of another. It’s hard to balance the scale at times.
Did you ever wonder if there is a connection between our loved ones who have passed and those here on Earth? Even if they have never met?
I witnessed this today.
Will and I were jamming in our room. The song “True Colors” from The Trolls soundtrack comes on.
Will crawls to me and gestures for me to lift him up. Then points to Shane’s picture on the dresser. What he does, brings tears to my eyes.
He puts his head to Shane’s picture and puckers up a kiss.
He then grabs the picture and wants down. That was the moment I was able to capture. The rest was unexpected and filled my heart.
Back story: The song “True Colors” was used in a childhood cancer awareness video featuring CHOP cancer patients. Some of those patients were Shane’s friends…Antonio and Cassidy.
Ella in particular cherishes this song. Every time she hears it, she thinks of Shane and Antonio.
How would Will know all of this?