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.

Day 17:
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.

[Show slideshow]

Day 16:
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.