New tumor: updates

We are overwhelmed with the amount of emails, messages and phone calls we have received expressing your shared grief over the new tumor news. I cannot thank you enough for that support for my family. Please forgive us if we have not returned your call or message individually, as there are too many to count at this time and we must stay focused on our kids, decision-making, coming to terms with the news, etc. We will certainly try, though I really hope everyone can use the blog as the source of info for a while at least. We appreciate your understanding, and most of all, your prayers.

Thursday was one of the worst days of our lives. The best way that I can describe how I felt is that it was as if my heart had literally been ripped from my chest and I was bleeding to death. I felt lightheaded, cold. As though I was outside of my body it hurts so bad.

Today is a new day, and I for one awoke with a new understanding: we are beaten, but alive. Yes, it hurts, but we can heal. God has granted me the serenity to accept what we cannot change, and the courage to change the things we can. We can keep fighting. We can love and support Madeleine and make and do the best we can for her.

-  This morning's ultrasound was quick, and subsequently we learned NORMAL.

-  This morning's spinal tap was quick even though we waited for hours. There are two results from the LP, the cell count and the cytology. The cell count is performed in the lab and indicates whether or not they can physically count the cells in the fluid. If there are no abnormal cells counted, it would be very unusual for the cytology to come back with any bad indications, though still possible. We received a phone call late in the afternoon that her cell count was ZERO- it's very likely the disease has not metastasized, ie. spread through the fluid. We'll know for sure next week.

-  We received a copy of the radiologist's report from the MRI; there is an indication of something on the bone itself in her spine. I should preface by saying that it is consistent with chemo patients to have lost significant calcium of the bones, including the spine and it is consistent with what her images indicate. However, it may also be a lesion or new growth. As a result, Madeleine will have a bone scan next week as well to determine what is showing on the MRI.

-  Madeleine's surgery, her third craniotomy and now 6th surgery, is scheduled for Friday, October 5th. Just three days after her 1st birthday. Dr. Lazareff, her amazing surgeon, called us while reviewing the scans. He said in comparison to everything she has already been through, this resection should be the easiest for her, the easiest for him. It does not appear that the tumor is attached to any surrounding tissues and he should be able to go in a scoop it out relatively easily. Please remember him and his steady hands in your prayers for Madeleine.

Given everything that has transpired, and the unknowns to come, we made an important decision this afternoon. In a private, informal ceremony after mass, Jonathan and Janine baptized Madeleine with the Church's special exception for us at Saint Augustine's. We all know she is a child of God, and this was ever so important for us. I'm hopeful that sometime soon we'll be able to have a lovely celebration of her baptism surrounded by everyone who loves her, just as she deserves. Just as I wish I wish I wish!! to give her a lovely birthday celebration. Nothing would make her Daddy happier than to give her everything. A unicorn if she wants it. She has earned it, this little love of ours...

More to come next week. Thank you for reading, thank you for praying, thank you for thinking of us.

RELAPSE

I am so tired.
I realize I have let our support network down.
At one point in time in June, I used the analogy of Madeleine's treatment as a tightrope walk, that I was so desperately looking forward to her reaching the other side, because it meant something larger than she or I or any of us. And that was true. But the tightrope walk is just one act. There are many acts to a circus, a whole program before everyone gets to go home.
I failed to fully communicate that Madeleine's treatment was not the end of the road, the end of her journey with cancer that would never affect her and our lives again. I realize that people- caring people - are trying to be supportive when they tell us that now we can go on with our lives, that we can begin to "'rebuild," (Jeff hates that one) or that it's finally over. Her treatment was just one act.

Madeleine has a tumor. Again.

I had faith that she would be okay, that she was going to continue to ward off this bleep monster. I understand the concept of unanswered prayers all too well. But this was not supposed to be one of them!!!!
I am angry!
There is no explanation as to why the relapse has occurred so quickly. We saw the scans from today and the one in June side by side - it happened with the snap of fingers. And I'm bleeping pissed!!!
So is Annalise. She doesn't know what's going on. She hears the words "surgery," "back to the hospital," "what now".... she lost it. She had a complete meltdown of anger- rage even. I can't say that I blame her. We are just dying inside to know how to comfort her, how to reassure her when none of this past year makes any sense!!!! We are overcome with guilt.
Do you know what it's like to live your life as if today could be the last day with your child?
Would you ever forgive yourself if you were not there on that day, God forbid?
Yes, she made it. Madeleine survived and we celebrated. But it was also a high price for our eldest daughter, who came to resent us for essentially abandoning her. It may be explainable to us, to you, but not to a 2 year old. And we simply cannot do that to her again.
We are lost. It's so early on in the relapse process to even begin to PROCESS the feelings, the emotions, the guilt, the anger, the sadness, the devastation, the fear, the worry, the what-are-we-going-to-do.
We are so desperately in need of prayer.

Madeleine will have a spinal tap and ultrasound Friday morning to hopefully rule out any other forms of disease in her belly, kidneys and spinal fluid. Those results must be negative if we are to have hope in continuing her fight. We appreciate your prayers so so very much. God Bless

MRI Thursday morning

Most of you will read this and Madeleine will already be under anesthesia.

9/27/12 at 6 am we check in for her 2nd post-treatment MRI of her brain and spine. 

We all feel really good about how she has been doing lately. I know I haven't done the best and didn't exactly meet my goals this month of childhood cancer awareness...there's a lot that has been happening. 

Nonetheless, Madeleine is doing great. 

She's weighing in at 8.5kg, she's grown a little taller, and is drinking better from a nosy cup.

She is SO HAPPY.

This face so truly illustrates how she somehow truly knows... 

as my Aunt said, "God gave her healing, she is going to make the most out of every minute of every day. She is a happy little girl."

First Cheerios!

Sent from my Verizon Wireless BlackBerry

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