donations.. come in all sorts of ways

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.

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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.

 

This picture captures how my boys feel. Nicholas.. angry at the drs and mistrust. Jonathan full of respect and hope.
This picture captures how my boys feel. Nicholas.. angry at the drs and mistrust. Jonathan full of respect and hope.

 

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.

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

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

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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.

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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.

Walk to the park

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.

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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.

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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. ..

Hearing us talk. .. it was too much for Tony and he needed to step out.
Hearing us talk. .. it was too much for Tony and he needed to step out.
Constant turmoil inside us all
Constant turmoil inside us all

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.

This is my Unravel theme photo.. super heroes leading the way ..down the halls of so many great labs.
This is my Unravel theme photo.. super heroes leading the way ..down the halls of so many great labs.

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.

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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.

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together again sissy

you and Jon boy

you are still teaching him

never did i imagine this

but

you and Jon boy

together again

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…until there is a cure..

 

 

18 Responses to “donations.. come in all sorts of ways”

  1. Wow, that was an incredible post. I love the super hero photo and the pre-kinder photo of Jennifer and Jonathan. Hugs to you all.

  2. Just completely amazing. Pictures say a thousand words. All of you are making such a huge difference. Seeing Jonathan look through the microscope at Jennifer’s cells took my breath away. We love you all so much. #LOVE4JLK♡

  3. Maybe that boy of yours will be a Dr or scientist.
    You are making such a difference in the cancer world. Many many prayers are with y’all every.single.day!

  4. What a truly amazing family you all are Libby. I have so much gratitude for the priveledge to know your story…your life really. It has changed me and what I will devote my energy, time and money to throughout my life. Thank-you Jonathan, Nicholas, Charlotte, Tony, Libby and most especially Jennifer for the remarkeable difference you are making in Dr. Monje’s lab and in the world.

  5. Oh Jonathan, you are such a smart boy. I know you will be blaze through the trail your mama has started, I see you wearing one of those white coats one day…for her—Jennifer! I love you boy, I am always thinking about you…
    Love, Me

  6. Exquisite. I think of you and your family all the time. And Jennifer too. Jennifer is still guiding and watching. I am certain she is in awe of her mommy, Daddy and her siblings too. May God continue to work through you and give you strength.

  7. All of your posts touch my soul, and have since the very first one. My perspective on this life here on earth changed on that day. Your words are so very powerful, I take something away from each one.
    <3Jennifer<3
    Always prayers and blessings to you and your beautiful family<3

  8. WOW…the tears just ran! I couldn’t even begin to control them. What an amazing experience that will just continue to bless others but Johnathon too! To know one day he was so close and could visually see what took his Jennifer from him!
    Dr M is one amazing person for so many reasons…but here you can read about one! I continue to say Jennifer in my days, and continue to keep you all in prayer! Hugs

  9. Wow…So powerful, so glad to be part of that donation and fluttering team! Come on Stanford team, find that cure we desperately need. I have faith!!
    Libby you impress me every time I read your blog. You are the most amazing mother, I love how you connect with each one of your babies, you understand them, you help them understand the world. Well done Libby, great work. Be proud of who you are, your family and your Jennifer! Your family is so lucky to have you…..Jennifer, Jonathan, Nicholas, Charlotte and Tony
    Keep fighting mama……we are all standing behind you cheering you on!!!

  10. Wow…. How touching. You and Tony are wonderful parents doing all you are doing and including your children. When they are old enough to understand it all they will be so thankful for all you have done and for always including them in all of this. Jennifer has changed so many lives and what an honor to be able to be part of this with you and your family. I will be here to do what I can when I can to help fund finding a cure.

  11. So powerful and amazing. Jennifer has and is continuing to change so many lives. Thank you for continuing to share your journey with all of us. Sending love.

    Jennifer<3

    XO

  12. I am so honored and proud to know your story. To see the great things all six of you are doing to help protect the future of our children. I am also honored to say that I learn so much about parenting just from reading this blog. So as always, I am thankful to you for continuing to share your journey with all of us. Keep up the great work, one step at a time you guys are changing the world.

  13. I think those might just be the most powerful words I have ever read. I am left totally speechless, which is a very rare thing for me.

  14. It’s an honor and heartbreaking to read about Jennifer and your family! Way to go Jennifer and fluttering! $70,000!!! And the President just signed the Gabriella Miller Kids First Research Act this week. Funding $12 million for childhood cancer and disease research in 2015. Gabriella lost her battle to DIPG in October 2013.

  15. Thank God for these good people, these scientists with warm hearts…for Jonathan’s curiosity which will lead him far in life…for Nicholas healing–and able to articulate his fears to you so you can address them…Tony stepping out to protect his overcome heart…and Charlotte keeping a memory of that time with sissy. And you: strong and yet so open and vulnerable with your words and your thoughts. Thank you for all of this, and thank you for delivering such incredible funds to the researchers. Thank you, Jennifer, for your cells to help us learn. Someday no cancer, no cancerous cells to look at in that microscope!

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