Those of you who follow me on Facebook may be familiar with Maddie’s tragic story, but I recognize not all my followers are Facebook peeps, and others may have missed the news over the weekend, so I want to share her story here as well.
Maddie is an incredibly smart, sweet and lovable 5 year old…and daughter to Erin Musto, an amazing woman I consider a good friend and quite possibly, one of the sweetest and most inspiring people I have ever had the pleasure of meeting. My heart broke for the Musto family when I received news on Thursday that sweet Maddie had been diagnosed with a rare inoperable tumor on her brain stem, which will not respond to chemo. When I received a text from Erin that evening, asking if we could do a family photo session the following day, my heart swelled with emotion. What a ridiculously amazing honor it was to be trusted to capture such precious memories. I’ve been pouring through the images since yesterday and am still in the throws of editing, but I wanted to share a few with you all now, so you can see for yourself how beautiful this family truly is.
Please take a moment to visit Miracle for Maddie and find out how you can help the Musto family through this incredibly difficult time. You can also visit Maddie’s CaringBridge page here simply by registering and keep up to date with her progress and leave notes of love and encouragement for the family.
You are loved Musto family…and we are all praying for a miracle for your sweet little miss Maddie.
Update from the Matt Musto – 2/6/2012
I don’t know where to begin… I want to start by thanking everyone for yesterday. Madeline made her first communion and the Bishop gave dispensation for her to also be confirmed into the Catholic Church. The church was full of friends and family. After, we packed a firehouse in Troy, NY for an impromptu reception and celebration of her achievement. Then we headed for Lake Placid to spend a couple nights with her immediate family in the Olympic Village. She is scared and she is sad she cannot do the things she wants to do. She can no longer run and play and it is heartbreaking to watch but she knows she is loved. She is on steroids to help the swelling in her brain and I think they are helping. She is sleeping easier and her eyes look less sunken in. Erin and I want to thank you all for the prayers for a miracle. They come in all shapes and sizes and I think we want to help god in any way we can.
Madeline’s tumor is in her brain stem and it is not a tumor you would normally think of where it is a nice clean ball that could be removed. Madeline’s is more like a 3-dimentional spider web in her brain stem so there is no way to remove it without removing her brain stem which is the most primitive part of the brain controlling everything from her heartbeat and temperature regulation to her ability to move.
Traditional chemo which ‘dumbly’ floods the body does not touch this kind of cancer. Radiation can slow it but has never been known to cure it and the process for only extending her life a couple weeks would be to put her under general anesthesia every day and we are struggling with making her live her life in a hospital and unconscious half of every day instead of enjoying it for no real gain.
But we are not giving up hope. I believe in miracles and I believe in the ability of brilliant people to come up with solutions to problems. We have put people on the moon, we brought Apollo 13 back and we have cured everything from small pox and polio to other kinds of cancer which went from a 0% survival rate just a few decades ago to 95% now.
Erin and I still need to discuss and explore this more but there is a doctor at Sloan who has tried an experimental treatment by a virus which attacks the specific cancer cells. Rather than non targeted chemo this is a smart weapon against a specific cancer cell. I don’t have my hopes too high. I am an engineer and extremely analytical and know probability and statistics like the back of my hand. But I do know that anything is possible. I don’t even know if the trial is still going on but it is at least worth a visit to Sloan in NYC to talk to them. I won’t forgive myself if I just give up. I don’t want to ruin her time left here or steal any quality time she may have on a long shot. But if there is going to be a miracle this is my way to give God a helping hand.
So please pray we can get in for a consultation soon.
Update 2/8/2012 – It is with a heavy and broken heart that I share the unimaginable news that Heaven welcomed a new angel last night…