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Genna's Place!

Our Supergirls, 2014

Welcome to Genna's Place!

We are so grateful to all of you who support us, love us, and pray for us, as Genna battles diffuse brain tumors caused by Neurofibromatosis Type 1...and Rosie fights her own optic glioma & plexiform neurofibroma.


G's scan of May was stable...next scan is 10/30

Rosie continues to be stable at this time (as of 8/24/15), for which we are deeply grateful. Next scan is next February


****March 20, 2006:
Genna's Make A Wish Trip..."I want to go to Disney World on a train"--thank you, MAW.****

A SPECIAL NOTE from February 13, 2005: "Mom! I can see stars...you know, those little white things!"...which was a miracle



Sweet Emma Tiki Bird
Drew G.

Coffeehouse for a Cure 2015 is in the works...February 28, 2015..Thank you for helping us find a cure.

a momentous day: May 3, 2007...I gave back the Braille Writer...an answer to prayer, one I never expected.


embrace the funk. run for a cure.

Yetifunk Gear is available at www.cafepress.com, search under yetifunk or NF cure!
look for G-foRce! Gear at www.cafepress.com/go_GFORCE
and www.cafepress.com/go_GFORCE2
* * * *

**In loving memory of Nora Coletta**

*******and for our dearest Sandy, always in our hearts*****

Run when you can, walk when you have to, crawl if you must; just never give up.
--Dean Karnazes

(Lance Armstrong)



Sunday, August 30, 2015 7:59 PM CDT

Howdy, all.

Summer has been insanity, a lot of wonderful things, some stressful things, just busy out the wazoo. Today is just a super fast moment of update before I go into full bore Last Week Before School Panic tomorrow. I am so not ready. Just so not ready. Even with the stuff I have done, I am not ready.

But first things first: last week Rosie had a stable scan. Scan day was tough. Really tough. The scan takes about 2 hours, and R was doing great, and then something in the head gear thing was hurting her, she tried to tough it out but ultimately they had to pull her out for a minute and try to fix things, but she was being so quiet and trying NOT to express her pain. . . that kind of flattened my mom brain. I really hate being by the MRI machine, that Siemens Magnetom. I hate it. Not like it is the machine’s fault that my kids have brain tumors, but it is an easy target for maternal venom.

ANYWAY, I digress: everything was rock solid stable. Rosie is so tough. We are so relieved. Beyond relieved. Another 6 month reprieve, and I really have to make that orthodontist call for Rosie now.

We did ask again about another NF thing for R, our doc sent us for a test to check it out, and while benign, (truly, not like “benign” brain tumors which are anything but), we do have another issue that we need to keep an eye on. I just don’t feel like adding more details now. We will see another doctor at Rosie’s next MRI day to discuss, but I am not super concerned at this point. Our doc wasn’t, so I am not. It will just poke at the back of my mind now. For now, that will have to do.

In other news. . .

Today marks 11 years since Genna was diagnosed.

11. Years.

Today G Had a Plan For Celebration involving fresh mozzarella from A&S (her buddies there were quite happy for her today) and pizza from Ciros. We went to Mass, and then played a round of mini-golf (sweltering, but a good time), G kind of melted in more ways than one, she just cannot handle the heat at all, she took a nap at home while the rest of us ate frozen treats (she just wanted to sleep), Dave took the girls to the pool while I did a quick yoga for runners workout (my left quad hates that I ran 5 miles yesterday and forgot to stretch. Or eat. Or anything) . . .now she is watching an America’s Got Talent that she missed. She is LIVING today. LIVING.

11 years ago I could not see today. Today was not even a glimmer.

11 years ago today was one of the very darkest days of my life.

11 years ago today we were so afraid. David and I were so afraid.

11 years ago today my kids were 9, 6, and 2. Now they are, well, 11 years older than that. I feel like that chapter of our lives is so long ago . . .but the legacy of G’s early treatments and relentless tumor progression stays with us today.

11 years ago today I was so young. Already not all that naturally brunette, but gosh I was young. I don’t normally feel old now, physically I feel no different than I did years ago, but mentally and emotionally I am a wizened old crone.

11 years ago today our future was so dark. Black. Pitch black.

TODAY my G is owning her survivorship day. She has challenges. She does. I do worry for her future. But 11 years ago today I thought we would never SEE the 1 year mark, let alone the 11 year mark. Today is a victory.

We are battle weary. We are a lot lonelier now than we were 11 years ago, walking this path for so long has made it very hard for us to find our way in the paths we used to walk. We just don’t fit anymore. But we are so grateful for the people who carried us through all these years. . .especially our doctors, Dr. Storm (the first person we met at CHOP), Dr. Jean Belasco, who has so expertly and compassionately led us through the last 11 years, Dr. Liu who has cared for G’s eyes since the first day we brought a weepy post shunt surgery 6 year old into his office. So many nurses, and other CHOP staff have so been there for us, for G.

Our families: our families are everything to us. Everything. Dave and I both come from massive families, and both of our sets of parents have been there for us every second. G loves all of our siblings so much. We love you all.

To the very few old friends who don’t steel yourselves when you see us coming—thanks. Just—thanks. We so appreciate sometimes just being able to NOT think about this overarching context of our lives. You help us do that.

In 11 years, the people in our neighborhood have made about 47,000 meals for us. These people, friends to us (and really close friends to my parents) have never wavered in their support of us, even when I hide from everyone. To the people of Mary Street, I thank you. Your kindness and love for my G has been a major reason that we stayed here long past when we thought we would. She loves her neighbors, and not just because you fed us all so much over the years. You help her feel like she belongs somewhere. You smile and wave to her. You text her pictures of your cute babies. You chat with her when she is walking the dog. You make her feel loved. Thank you.

Sigh. I was doing so well just going with the celebratory vibe today. But remembering is important. I am just choosing not to focus so much on the terror of that day. I just can’t let myself do that this year. I have to not do that.

In 11 years, we have met so many mighty, mighty people. Our hearts have broken for so many families who walk for a while alongside us and then find healing only beyond this life. It is a tough club to hang out in, the brain tumor/ nf club. We speak a common language, we live and die by each other’s scan days, we rejoice with good news and feel crushed with bad news for ANY child in this community.
Some days it is very hard to bear, in 11 years we know so many people—for something so “rare”, we know So. Many. People. Who suffer and fight and live and laugh and love. But our friends in this community keep us going. The constant support is indescribable. AND it is good to have that kind of weird niche audience for my now much darker brand of humor. Day hospital jokes are only funny in some circles. Thank you for being our circle.

11 years is a miracle for us, and a victory, and while everything in life overwhelms me most of the time, today is a day for hooray.

Yesterday we had the opportunity to go to the soup kitchen our church helps sponsor. We go 4 or 5 times a year if possible, I wish we could go more. Genna jumps right in prepping food, chatting with the other volunteers, working. . .when it is time to serve the clients, she likes to give out the drinks, her cheerful “Here you go!” to each person and “you are very welcome!” to every thank you is a bright ray of sunshine. She is awesome. Yes, she still needed to rest when she got home. Her energy levels will never be great- but she can do things. She can help others. She can make people smile. And you know, even 11 years ago the kid could do that.

I am so proud of my G. So proud of this mighty, loving girl, even on days when she goes all normal teen on me- - I LOVE those days. I love those days, because 11 years ago, having a teen freakout did not seem like it could be possible.

11 years. Not sure how we made it here, but so grateful we have.

Peace out, all.

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Hospital Information:

Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA
(215)590-3025 if you want to schedule something oncological, I hope you don't have to, ever.


http://www.timothypauxtisfoundation.org   One family's fight to cure pediatric brain cancer
http://www.kmc-movingrightalong.blogspot.com   my blog in which I try to not obsess about medical stuff
http://www.ctf.org   The new website of the NF Foundation, with lots of info on NF (obviously)


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