done good

We went to an event last night.. me Tony and our.. well we don’t have a official title nailed down.. but basically our COO for Unravel..

It was to support Innovators Network who basically support Project Violet. I am a huge fan of what they are doing and how they are doing it.. far too intelligent for me to explain.. but worth a look!

I love that people on the West Coast are starting to stand up and bring their support to these amazing west coast minds.  It was a good experience. I am glad we went.. but I am also left today with a dull ache and sadness. I am trying to sort out why.

**If we did it all again this is who I would trust with my child life.**
**If we did it all again Dr Partap is still who I would trust with my child life.**

I thought a lot about Jennifer’s oncologist. How amazing she was to Jennifer and to me. . How very lucky we were to have her. And I thought about the incredible Dr. Monje and her lab that has my Jennifer’s cells. How much they have been there for me.. caring about me and not wanting anything back from me .. ok so this is it since writing these sentences has me in tears.

why?

I think I just so desperately what to help.. want to make a difference. Want people to see the amazing work these drs are trying to do.

And I guess I don’t want to care about it all so much… I don’t want to have such a personal reason for it to matter to me.

Last night Dr. Olsen spoke about going into the room after seeing a scan of brain stem glioma.. what its like to know you are going into a room to tell these parents there are no real options..  I looked over at Tony a few people away from me. I watched him look at the MRI of another lost child on the screen. I saw his jaw clench. Saw him swallow hard..

..and I remembered.

Being that parent. In that little examine room. Being told this tumor was inoperable.. that there is no cure.. Which really meant there was no hope.

I now know that it wasn’t just because she was adorable in her Belle costume for that first clinic visit that caused her to get so much attention.. it was that she was the very essence of..

dead girl walking..

And we had no freaking idea.

I remember the sound of him crying.. sobbing, begging and knowing he had to go through it privately.. that there was nothing I DSC_0133could do to ease his just beginning to break heart. So I laid in our bed and wept while she slept soundly across the hall.

I wish I could stop that. I wish I could prevent any other wife from having to hear that noise that you can never forget. 400 kids a years diagnosed with this type of cancer a year

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Most places and events I have been to lately people were there and knew about pediatric cancer. Last night though I had a glimpse into how scary I am … how scary the truth is. Trying to talk to people.. about what I now know.. about the statistics that are so haunting.. and trying to find as many moments to say her name.

Jennifer.

Its hard. That balance. But I am learning.. as much as I want to scream the statistics .. the truth as I am learning it.. I need to go slowly.. But I am learning.. because I need to have it matter.

I don’t think I ever shared this.. Dr.Monje and team wrote  this paper that was recently published..  the goal as I understand it is to change the way they radiate these DIPG kids beginning at Stanford. DIPG is in the brain stem… back and bottom part of their heads..The tumor also tends to lurk in a very specific area in the frontal lobe part of the brain.

JLKs initial tumor in the brain stem (pons) responded well to treatment. It actually shrunk.. but it had already progressed in her frontal lobe. Its a question I have carried with me since we found out it had progressed..  I will always wonder if we had radiated her there .. if she would have gotten more time..

That’s so wrong.. that I don’t even wonder if it would have saved her.. but just more time.. more low symptom time is all I wish for now.. We only got 4-5 weeks post treatment til hospice started.. her steep yet cruelly slow decline.

 

I put it all together now.. if we could have used some of Olsen’s tumor paint to see the fucking cancer and Monje’s updated radiation to attack it.. maybe we would have had some more time.. Just those basic days at home that I long for.. days like today where we played, ate lunch, made up a new game and watched some shows..Nothing fancy.. just perfect..

**maybe a month before she died one of our few average days post radiation**
**maybe a month before she died one of our few average days post radiation**

…well except for the unrelenting empty in the room.

At least three times today I did something for 4 kids..

..is she pulling on my shirt reminding me she is here?

oh honey..

The Jennifer Lynn Kranz fund is cited in Monje’s publication. We are doing something. The money we are all raising for these incredible minds and loving hearts is helping. I am proud to be part of the ‘glitter squad’.

Her tumor is pictured in 2a and 2d. She is creating change.

I am still raising her to do the right thing.. to help those that need it.. To stand up and help…

there it is..
I wish I could hug you Jennifer… tell you how proud I am of you.

You done good little girl. ..

You done really really good.

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…until there is a cure

 

21 Responses to “done good”

  1. You all have done good. My support and love is with all of you while you keep doing good, through her, and for her, and for all the children and their parents who you are so selflessly helping. You done good too, Libby. XO

  2. Yes, Libby…until there is a cure you have our prayers and support. Good job, Jennifer! We love you! Hugs…

  3. Libby, I am sitting here in tears about the post you made on Facebook about the decrease in funding. I am livid and upset and I don’t know how to help. I wrote to my state senators and representatives months ago, hoping getting any voice to them could help. I also sent them a copy of Jennifer’s obituary and her photo. I feel helpless.

    You guys are doing so much and making such a positive impact in this awful world of childhood cancer. I want to help. I feel a need to help. I just don’t know where to start.

    As always, love and light to your beautiful family.

  4. I read every single line of this blog slowly and carefully. ..with tears of course,for all that you go through every single hour of every single day. I am a mom of two little ones, who fears so deeply to ever go through a smidge of what you have. A mother that is now so hyper aware now that having a cancer child is not such an unrealistic thought. Although that fear is in me daily now, I thank you Libby, for making me so aware. For putting this fire into me to do something. I spread the knowledge probably more than people want to hear….but I just DO NOT care…

  5. Yes Jennifer has done good and so have you Libby,jennifer wouldn’t be that precious Angel with out you. Than you for educating us and sharing Jennifer’s life with us. I’m proud to be part of Jennifer’s Glitter Squad..forever6,never forgotten already in my heart Jennifer Lynn Kranz

  6. You all are amazing Libby. Jennifer has done amazing. She will continue to shine. Never stop spreading your glitter baby girl! We love you all. LOVE4JLK♡

  7. Good Job Jennifer! You are doing such good work and so are you Libby! I am honored to be a part of the Glitter Squad! I talk about your JLK any chance I get. I have a huge passion for raising awareness. Thank you for making such an impact on me, thank you for educating me. One step at a time we are making a difference. Still reading, praying and thinking of the Kranz family….EVERYDAY! Nothing but love4JLK.

  8. You have all done good! I am humbled by your story and who you are as people. You and Jennifer are making a huge difference.

  9. yes, you are still raising her to do the right thing….mother and daughter forever. We are a pediatric cancer family, and walk in your world, not the same path…every path is different, but my heart knows your world. A world with tears and pain, and love and support, and moments of joy that include Jennifer with all her glitter. And you are so right…it DOES matter, it will ALWAYS matter and even if we focus on moving forward to helping fund research, we never lose focus of a special little girl, with beautiful eyes and an adorable smile, named Jennifer.

  10. Oh how well I understand! This post brought back the memories of April 19, 2010 for our family when we found out our beautiful 9 year old daughter had DIPG. I will never forget the cries of my husband, “No God! Not my baby girl”, over and over and the pain that ripped through my heart. Hang in there! It has been almost 4 years since my daughter’s death after a 6 month battle with this beast. I didn’t think I would survive, but I am still here fighting. Fighting for a cure! Fighting for the other families in this battle! It is one of the things that keeps me going. Sending hugs! Keep writing and telling it like it is!

  11. Jennifer has done SO much to help pave the path for change and educate all of us. So have you, Libby!! Keep spreading the glitter! Love to all 6 of you!!
    XO

  12. Libby, you done good, too. So so good. Thank you for continuing to share with us… Love from a faraway friend, Eileen

  13. I think I just so desperately what to help.. want to make a difference.

    yep.

    I say her name a lot. I tell my Girls all about her, well what I know from you sharing her with us on your blog.

    I am so ready to follow Jennifer’s lead and do good!

  14. Your strength in this unfair battle amazes me. Continued prayers for your entire family. LOVE 4JLK always:)

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