Ignorance is not Bliss

It has been busy. As much as we take a deep breath and try to slow down, there's always something. This week has been challenging. Some positives, some negatives. But my babies are home together and we get to do jumping jacks in our pj's and laugh together. That is what matters to me.

I love my ATRT group of parents. I think I have never been part of a group that genuinely feels for each other, supports one another, and there is never anything catty or oppressive to each other in spite of the many negatives. We are connecting through our children battling an ugly deadly disease, the biggest negative of all. But boy do we all know our respective feelings all too well. And I think we all deeply care for each other's children. And most of us have never met face to face.

One of our moms, I love her already. She lives in Canada. Her son is about 6 months older than Madeleine. And she is positive when she has no reason to be. She can be straight about our kids' cancer and then post a photo of her son smiling. She inspires me because I realize I haven't been posting as often because I'm stuck in my rut of oppression by this cancer BS. Today she wrote,

"I know everyone may get tired of hearing about pediatric cancer. However, when you kiss your kids goodnight tonight, I know those who can not whisper goodnight in their child's ear. While you get to brush your teeth and crawl into bed, I know those who stay up to administer meds/chemo while their children sleep. While you sleep and rest to go to work I know those who are awake in worry of bringing their child to radiation treatment in the morning. I know it's tiring to hear about their fight. I know it's easy to just skip over ... 
It's not easy to live this life its not easy to push it on others to help us find a cure. It is easy to look into a child's eyes and say "I am there for you." 
Can we all say that? 
I challenge you all to find a warrior support a warrior and look into his/her eyes
And say
"I will be there for you."
Ignorance is not bliss."

I hope everyone who reads this can go to their child, hold them, kiss them, and for 15 seconds....... be a cancer parent. Feel these feelings, these fears. Imagine you might have to bury your child tomorrow. And then Thank God for your healthy child. Because when those who do not live this life can be truly empathetic, we who live this nightmare begin to build in numbers in support for finding a cure. We are too few to do this on our own.

-Thanks Brenda! xo

Please help us continue spreading the word. When people give a damn, it does change things.
We're spending this Friday together as a family. See ya!

GENETIC RESULTS

It seems like forever we've been waiting. Jeff truly has. From the moment Dr. Davidson confirmed Madeleine's INI-1 gene deletion, he has worried himself literally sick over the thoughts of what if we caused this? how could I live with myself, my daughter losing her life? what can I tell her mother that would comfort her if it's her genes?...

We had already discussed and decided that if our results are positive, if by some reason one of us has carried this through the family tree undetected, that we would only grow our family by adoption. Though this decision had been made, I don't think we had quite come to terms with it. (On a side note it is very likely we will adopt anyway, thanks to this experience). This experience has taught us so much. We have watched other families struggle with more than one child in treatment, with the unknowns of what's causing their children's illnesses, even losing a child before understanding their genetics. I know now too why our oncology team wants us to meet with the genetics counselor, just to have the updated high school biology knowledge of how genetics work in the body. It helps us to understand how these things happen when it all seems senseless.

That being said, Dr Davidson called late Tuesday afternoon to check on Madeleine. I turned on the speaker phone so she could talk to her (she calls her Boo Boo) and she could hear Madeleine cooing back at her, though she didn't cooperate much in showing the doc her latest affinity to screaming at the top of her lungs in addition to her normal babble. 

We don't have another appointment with her until next week, the first time we've gone longer than 9 days without seeing her. She called to tell us the results came back from Philadelphia......she wanted to call us right away....because they are negative.

Annalise will be okay; she is a normal healthy child that will not be compromised by this monster. Any future children Jeff and I conceive will likely not be compromised by this monster. Madeleine is unique, she is quite literally the only person like her, 1 in 7 billion. As if an elephant had been sitting on his chest since February,  her Daddy exploded into tears of relief.

This is just one of many reasons why research is so vital to our family, to our Madeleine, and to all children facing AT/RT. It's an absolute monster of a disease. No two children are exactly the same, which make funding for research even harder to come by. We are in old ancient Greece where inferior children were cast away and individuals with the best genes may leave the most offspring, or so the reasoning must be for these children - they are not worth saving. Well, not anymore. September is Childhood Cancer Awareness Month each year and I hope to be able to share everything I have learned and am learning about how to Support, Hope, Research, Fund and Thrive for these kids. I want my Madeleine forever.

please, please pray for little Eric James Baron battling ATRT at NYU  in the ICU, he is very sick.

Madeleine is 11 months old

My darling baby, 

this 11-month birthday means so much more than just the tail end of your infancy; you have beaten the monster who threatened to take you. They told us you would not make it to this September if we chose not to do treatment. You braved what could be the greatest feat of your entire life, to be here with us, to grow and prosper, to scream and giggle. To Live! You are an incredible child. Happy Birthday My Love. 

Mama