Friday was another 12th. Marking 10 months since I held my daughter last. I have promised myself that I will spend every 12th doing something for them because of her. This month for the first time the “them” wasn’t my 3 surviving kids.. I did it with my kids.. but did it for the kids still in the fight for their life. This month I was privileged enough to give Dr. Monje the $70,000 check from our first years fluttering campaign.

 

We had prepped the boys for it.. let them know we were going to a lab where the scientists are working to try and find a cure. Told them we were bringing a donation from the families that raised money by fluttering.

 

 

We were mostly worried about how it might be for Jonathan. Earlier that morning I had talked about my 2 sickie boys to them. About how they all got each others colds.. About 10 minute later Jonathan said to me. .. “Yea mom, but Jennifer had the sickies first”

I feel like we try to talk to them all the time about the difference between cancer and colds.. or asthma.. I think they understand and then something like that comes out of one of their mouths.

Because of his age and relationship with his sister.. and his ability to verbalize so well our attention often gets focused to Jonathan and his needs. But sometimes we are wrong. This day at the lab is a great example of that.

 

Nicholas was so scared when we got there. He was trying to make himself disappear into the wall.

When he talked to me.. he simply said “Mommy don’t let them touch me.”

We did our best to reassure him, telling him that its not that kind of place, they don’t take care of kids at the labs, they only try to find new ways to save them.

One of Jennifer’s oncologist, her fellow, came out first. Dr Shah. It was the only time I cried at the lab. She stopped first to hug and talk with me.. then she noticed Charlotte “wow she is so big” Charlotte was just a baby during all those visits a year ago… but an important part of them. A release and a distraction. .. for all of us I think.

And she has changed. So much. But Jennifer hasn’t. My first daughter forever frozen in time. I cried as I watched this doctor approach my healthy child.. while we all remembered the one missing. When I joined them just a minute later I started to ask Charlotte if she remembered this lady.. and then she looked at Dr Shah and said “sissy”. Both of us just looked at each other.. unsure what to say next.

Dr Monje came out soon after. We chatted for a minute. I had already shared with her over email what Jonathan had said that morning and when I told her what Nicholas said a few minutes earlier she suggested we take the kids to her office and just talk to them together.

Her idea. Not mine.

We had a camera crew there filming for Unravel and one of our families best friends there to take pictures. We had all of them stay out of the office for this talk.

I snuggled my boys on the couch.. and we talked to them together. About their questions.. of what causes cancer.. how come some kids get cancer .. We talked honestly, about the things we know the answers to and the ones we don’t. And also how Unravel is helping these doctors find out the answers.

What a gift this mother, who happens to also be a brilliant scientist, gave my children.

Her idea. Not mine.

They will still worry. This much I am learning. We took Charlotte to a doctor appointment yesterday with a new guy, when he came in the room and started to examine Charlotte the boys, Nicholas in particular got very intense. So much so the doctor noticed, asked if I knew him already,  so I explained our story. Everything changed right then.. all my kids became his patients and he showed a care and a understanding I have rarely seen. He then explained a personal piece of his history that explained his level of kindness and genuine caring for all of my kids. Side story really.. but one worth sharing of the great physicians out there. ..

After our talk everybody was more relaxed. I think we could have gotten way better check pictures if we had done this first like Dr. Monje suggested.. but I’m ok with that because the point of this trip wasn’t to get a good picture.

We gave the kids the option of seeing the inside of the lab, to see where the science and research takes place. Jonathan was very excited at the prospect. Nicholas hung back with Charlotte and Tony.

He loved seeing and joking with the students and scientists working towards unraveling kids cancer. He carefully studied everything going on in the room around him. Trying to absorb it all.. and learn.

He looked through a microscope and saw cells. I didn’t tell him it was his sisters cell line. .. a living growing piece of her in that dish. When his mind is ready for it he will connect the dots.. he knows we donated her tumor and that he saw cancer cells.. One day he will ask if its her cells. And I know we will be welcomed to look again.

together again sissy

you and Jon boy

you are still teaching him

never did i imagine this

but

you and Jon boy

together again

…until there is a cure..