Yesterday was definitely an eye opener. Many of the unknowns are now known. We have appointments (with actual times and dates) for all of Xander's work-up. We found out Xander will get 2 central lines -- SOP for HSCT.
Xander decided that he would like to change his name to "Super Xavier Salsitz" - I told him he could do it with our support on his 10th birthday (2013).
The protocol does not call for radiation at this time (we are thankful ❤)!
He will get four days of Busulfan & Fludarabine with Atgam (wascally rabbit) also the first three days.
March 6th is the scheduled "Day zero". This is a very auspicious date for us ❤❤❤! March 6th is also our wedding anniversary.
Xan has been curling up on the inside in the past few days. For example, he stated that he found it hard to sleep without BOTH his baby blankets (thanks Criss Fosselman)! A friend of my mother in Pinehurst sent him this awesome all organic cotton one more appropriately sized to an 8 year old - he has agreed that he will love this one too, but just in case we need to bring his baby blankets❤
The first picture is of Gabe giving Xander a ride down to PT. Deborah (Gabe's grandma) kept an eye on Xander while Gabe had PT and Emilie and I met with Mandy, the bone marrow transplant coordinator for TWO hours! Mandy is very organized and knowledgable. 99% of all of our questions were answered.
The second picture is Xander signing his paperwork requesting the HSCT (bone marrow transplant). He really loved the fact that he needed to be consenting 😄. He did a great job, making sure he had his birthday in number format with slashes.
Okay, and for all the people who have gifted us with Zingerman's cards. We got the don't make a habit of this, but high fat, high protein is the doctors order. This picture is of the Gabe that works at the Deli counter. Gabe deserves a huge attaboy as he has really been a pleasure to do business with and a friend to Xander! Zingerman's is going to make my kid plump…I wonder if he likes chopped liver?? I hate it but everyone else I know loves it. WE SHALL SEE.
Oh, as Steve Jobs used to say, "One More Thing!" - The mother of a child in my son's class - a very generous soul (I don't have her permission to publish her name) has had some hematological issues in the past few days. I want to send a big hug and a bundle of love towards their whole family. Please know that we also will keep you in our thoughts and prayers!
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