Nick in RaChaCha Posted July 13, 2006 Share Posted July 13, 2006 Here is part of an email that Mira's Mother sent us. I'm sure she wont mind me sharing this with the board. It’s been a busy week and a half that we’ve been home. Mira has done well. The first week she was tired and a bit fussy while still being weaned off of the narcotics. This week she’s been gaining strength and skills daily – she’s now cruising around the living room again, only holding on with one hand at times. Talking up a storm – the events of the month of June haven’t left their mark on her. What a relief! We’ve been additionally busy for the past week getting second opinions on whether Mira should have a ‘second look’ surgery before proceeding with her transplant. Dr Dubowy had felt that the risks outweighed the benefits of surgery and we were not so sure. Everything we’d read says that Mira’s best chance of long-term survival is surgical removal of the tumor, layered with all the other things she’s having. We wanted to be sure that we shouldn’t be doing that. We talked to 4 leading experts – cancer centers, radiation oncologists and neurosurgeons and feel we’ve gotten the best information available. The clincher was Dr. Gardner at NYU, who co-designed the protocol that Mira is on with Jonathan Findlay (who used to be at NYU). She said that Mira should definitely have surgery now, that the entire goal was to go into transplant with as little residual tumor as possible, which was our take on it. Dr Wisoff, the neurosurgeon feels confident that he can get some of the tumor out with little to no damage. Dr Merchant at St Jude, who is an expert in ependymoma, said the same. So, Mira will be having surgery at NYU on Thursday. We had initially leaned toward surgery at Sloan-Kettering, but NYU does 3x as many pediatric brain tumor surgeries, so that made more sense to us. Dr Wisoff was recommended by Dr. Pat Kelly, a family friend and one of the top neurosurgeons in the world (who is also at NYU). Can’t get much better than that. It was a hard decision. Chris and I wanted to hear that it was the right thing to do and that it would improve her long-term outlook, but it’s also hard to get excited about sending your 2-year old into brain surgery. Mira will be in the hospital for about a week +/- after surgery, then back home for about 2 weeks to recuperate. Then we’ll resume consolidation and transplant and radiation after that. We’ve gotten a lot of new information about Proton Therapy in this process and will hope to go to Houston for that when the time for radiation comes. A bit of a whirlwind, but hopefully a combination of the best possible treatments to leave Mira cancer free, with a low risk of relapse, with as little neurological damage as possible. That’s it in a nutshell. We have 4 days left at home and will fly (probably) to NYC on Wednesday, Mira will be admitted, we will meet with the docs, then surgery on Thursday. Many details to work out on Monday, as we made this decision yesterday. Thanks for all of your support! Even when we don’t talk with each of regularly, we know you’re out there rooting for Mira and it helps us stay strong. I know she’ll come out of all this as well as anyone can – and maybe better. For more information about this little angel and to see the cutest picture of her go Here Link to comment Share on other sites More sharing options...
Nick in RaChaCha Posted July 13, 2006 Author Share Posted July 13, 2006 Here is to reaching 100 prayers for Mira. 1. May God's love reach out to you today. Link to comment Share on other sites More sharing options...
Beerball Posted July 13, 2006 Share Posted July 13, 2006 Great picture of the little kid, looks like she's ready for some FAT! Hope all goes well. 2. God bless you and keep you strong. Link to comment Share on other sites More sharing options...
theesir Posted July 13, 2006 Share Posted July 13, 2006 3. I've read about Mira before, but each time I get choked up again. That could be my son. God, watch over this sweet girl and give her family the strength to be positive for her at every turn. Link to comment Share on other sites More sharing options...
ACor58 Posted July 13, 2006 Share Posted July 13, 2006 4. May god bless her and give her strength Link to comment Share on other sites More sharing options...
Gavin in Va Beach Posted July 13, 2006 Share Posted July 13, 2006 5. God bless Link to comment Share on other sites More sharing options...
Ramius Posted July 13, 2006 Share Posted July 13, 2006 6. God Bless you Mira. He'll be with you through all of this. Link to comment Share on other sites More sharing options...
Dan Gross Posted July 13, 2006 Share Posted July 13, 2006 7. God bless you Mira. Link to comment Share on other sites More sharing options...
erynthered Posted July 13, 2006 Share Posted July 13, 2006 8 ) May God bless you and watch over you, get well soon. Link to comment Share on other sites More sharing options...
5 Wide Posted July 13, 2006 Share Posted July 13, 2006 9) May God give you the strength to overcome your challenges. Link to comment Share on other sites More sharing options...
stuckincincy Posted July 13, 2006 Share Posted July 13, 2006 10) Bless you, little one. Link to comment Share on other sites More sharing options...
ajzepp Posted July 13, 2006 Share Posted July 13, 2006 11) God bless you, little one... Link to comment Share on other sites More sharing options...
prokri8 Posted July 13, 2006 Share Posted July 13, 2006 12.) May God be with Mira and her family. My prayers are with you all. Link to comment Share on other sites More sharing options...
GoodBye Posted July 13, 2006 Share Posted July 13, 2006 13) God bless Mira and her family. Link to comment Share on other sites More sharing options...
Puhonix Posted July 13, 2006 Share Posted July 13, 2006 14- May God Bless Brave Mira. Link to comment Share on other sites More sharing options...
Movinon Posted July 13, 2006 Share Posted July 13, 2006 May God watch over you Link to comment Share on other sites More sharing options...
NEEDFREDJACKSONNOW Posted July 13, 2006 Share Posted July 13, 2006 16. God Bless the little one and her family. Link to comment Share on other sites More sharing options...
cåblelady Posted July 13, 2006 Share Posted July 13, 2006 17. Love and prayers. Link to comment Share on other sites More sharing options...
mead107 Posted July 14, 2006 Share Posted July 14, 2006 18- prayers for mira Link to comment Share on other sites More sharing options...
duey Posted July 14, 2006 Share Posted July 14, 2006 19 - God bless you sweetheart, and God bless the incredible strength that you have undoubtedly shown to all those whose lives you have touched. Link to comment Share on other sites More sharing options...
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