Jackie and I are so touched that so many of you have reached out to us. We know it’s going to be a difficult road but all your support is invaluable. Thank you all. I promise to get back to everyone who has written, it just might take a few days.
Rafaella has recovered remarkably well from the surgery and the biopsies yesterday. She was up and running around with no pain medication today. I have to say it is definitely due to how well the surgeon did his work. I was expecting a decent amount of residual skin breakdown from the surgery and there has been none. The anesthesiolgist was also amazing. Not a mark on her face or in her mouth from the intubation or the gas mask. I am so impressed with the quality of the work they did. As an added bonus, she seems to not mind the double lumen hickman line that hangs down to her knees, or the new funny looking button above her belly button. The only negative thing that came out today was that she is once again anemic from an iron deficiency. It’s a very common form of anemia where there is a decrease in the number of red blood cells. Without the iron, the red blood cells can’t carry oxygen efficiently. Basically, because of this, she can have a sore tongue (which she complains of), some fatigue, some increased itchiness, brittle nails, decreased appetite, does this sound familar to you EB families?
So now we go home and allow her to heal. I am waiting to hear when we will go in to harvest a batch of her stem cells. In a nutshell, she will be given some medications to stimulate the bone marrow to produce more stem cells. Rafi will get hooked up to a machine which will filter her blood and collect some cells. The reason to do this is pretty simple. If Rafi rejects the donor stem cells, we can infuse her cells back into her and be theoretically no worse off than we are now. Except for the fact, of course, that she went through a conditioning regimen of chemotherapy and immunosuppressants.
Anyway, both Jackie and I are nervous and excited that we are getting so close to this transplant that we have worked so hard to get to for almost two years. And yet, I have such mixed emotions about this. As a father, my job is to protect her and it’s everyone’s hope that this treatment may do that. Yet, at the same time I am really putting her in harms way. In the end, and this is how I sleep at night, I know no matter what happens, Jackie and I made the most informed, rational and emotional choice possible. Leaving our home, moving here and enrolling her in this trial was absolutely the right choice. We are giving her a chance to live a more normal life. Hopefully, she will be able to grow into adulthood and gain her independence. I want her to go to college, to live away from home, to have boyfriends, well maybe not have boyfriends. But, I do want her to be able to sneak out of town for a weekend with her friends without having to schedule nursing visits and drag an extra suitcase of bandages. Maybe all that might not happen, but right now, this treatment is the only option to potentially give her those possibilities.
I know the road ahead is not paved in gold. I know we will walk through fire and question our decision at several forks in the road. I know my anxiety level will be through the roof. I know have some control issues, or rather the inability to scede control, and this is going to test my limits for sure. I know it will be worth it. I think I may need valium, because I doubt I’ll have time to have my single malt scotch.
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Peter & I Are Praying For All Of You!!!!!! I Just Finished Reading The Entire Website And Nearly Ripped All Of My Hair Out! I Suspect You Two Are Bald By Now, But Be Strong I’ll Have Buffing Cloths Waiting When You Return Home!!!!
Remember To Laugh As Often As Possible!! Best Of Luck!!! John…
PS- You guys are the best parents!
I am glad things are off to a pretty good start. Please please let us know if we can do anything. We miss you guys. We are in the process of closing on a house in Madison NJ (won’t be done til March or April), so we may be gone when you get back:( I hope we can keep in touch. Give Jackie and Rafi our love.
Hi,
My daughter Natalie is now 10 months old and allso suffer from RDEB-HS. I will follow your blog closely to see how little Rafaella is managing through this tough treatment. I wish you all the best! I’ll put up a link to your website from my EB-blog, hope you don’t mind!
Jenny
Glad all went well. Remember what I told you! We’;re so proud of you for the decisions that you and Jackie have made. We’re rooting for all 3 of you! Go Rafi!
It was so nice to meet you guys at BINGO the other night! What a beautiful little girl you have!! We will be sending lots of prayers your way!
Take care!
Shanna & Ireland
Thanks for sharing, all our best, please let us know if we can help.
Found your site off of Jonah and Sam’s sites. Our prayers are with your family. You are so brave and inspire me.
I’m so thankful that you are keeping us all in the loop. I wonder often about how she’s doing and what’s going on; but am reluctant to call because I can imagine you’re a bit overwhelmed and perhaps might not be in the mood to talk. I also know that with all the people who love you guys (us included) that would be a LOT of phone conversations. We miss you and are praying for great results and minimal pain and discomfort to Rafi! You DID make the right choice! Never second guess it! Love you guys!!!!!!!
Karen, and the boys
Glad to hear all is well at the moment! Brett, you’re a good writer… Clear perspective is the only thing that moves us forward and your ability to survey and weigh your families situation is inspiring in it’s honesty! Rafi is such a lucky girl to have such great parents! …Oh, and she will have boyfriends and you’ll be glad; she’ll be happy & healthy because You & Jackie saw to it!!!!! Much Love & Well Wishes From Home, John.
Praying for all of you!
Brett, Jackie & Rafi – It was so great to meet you all the other day! It was definitely one of the highlights of our trip. I really appreciate what you wrote about what you want for Rafi’s future. Someday you and Rafi will dance at her wedding. We continue to keep you all in our prayers.
I hope the treatment goes well beyond everyone’s expectations.
I am glad I can keep up with you through the blog because I am very bad about keeping in touch.
I often think of Rafi and hope that she can soon enjoy a better life. I know Madison’s epilepsy doesn’t come close to Rafi’s in terms of robbing her of the simplest pleasures in life but I know how it important it is to us as parents that they have happy and fulfilling lives.
With all the hardships she (and you) has been through Rafi is the most amazing little girl I have ever met.
Hugs to all of you and stay strong!
So glad the first hurdle went well and rafi is feeling good. We are thinking of you as always and missing you here in NYC! Thanks for keeping us informed.
Hi,Amit and I miss you very much!. We enjoyed our time at play group very much. Although we joined the group later, we got to know Rafi very well. We wish you the best of luck with everything …Amit sends you a big hug and a big kiss…
I found your blog from Sam’s CaringBridge site. I’m praying for health and a sense of peace; looking forward to hearing about your daughters treatment!
You two are the most amazing parents that I have ever seen. We have no doubt that you are doing the right thing. We miss you and especially Rafi very much. Forest still talks about Rafi everyday (especially when we walk by your apartment). We can’t wait for you to come back. Come home soon!
Brett, Thanks for setting this up and thanks for your honesty with what you are feelings. I’m so glad that the intubation went so well…it goes to show you that you went to the right place and that this was the best decision for your family. Rafi is a tough little girl and I believe that she will get through this. Wishing you guys the best of luck and my family and I will be praying for you guys!! Kisses for Rafi and hugs to you and Jackie!!!
Wishing only good things for you guys! Thanks for setting up this blog to keep us posted. We look forward to your updates and for a successful “ride”.