Friday, May 29, 2009

Day +58: Looking Good To Go Tomorrow














Much better news today. Max's ANC has shot up to 1560 with the GCSF medication that they are giving him so it appears that it was just suppressed from the gancyclovir and maybe some virus, although they have not found him to be positive for any virus yet. His fever has still not returned either and he is feeling good...eating and drinking well and generally enjoying the day, with the exception of not being able to go home today. He threw a bit of a fit when I told him that the doctors wanted him to stay one more day. It's a good sign that he wants to get out of here. Tells me that he is feeling just fine and ready to get back to his normal activity at home.


The doctors are just waiting on final results from the blood tests and cultures that were sent to the lab on Wednesday shortly after we got here. Some of them take 48 hours to "grow" to be sure there is no infection present. So far the ones that they have gotten results back from have all been negative. All excellent news.


We're just waiting things out now. As long as there are no more fevers and his ANC and all blood results look good tomorrow, we'll be on our way home! Yeah! I keep telling Max to look at this as hopefully our last night in the hospital forever! May be wishful thinking but, it won't hurt to hope for that!


I have touched base with several of the families that we met while we were originally here for Max's transplant and things are not as positive and encouraging for many of them. Particularly, two families that we met with sweet baby boys are having tough times right now...send positive thoughts and prayers to Brayton and Ethan and their families please. In addition, one family who is going through their second transplant with their second son, Troy is having a really hard time so please keep them in your thoughts and prayers too.


We have always felt blessed with our situation with Max, as hard as it has been, because things from many perspectives are "best case". We are very reminded of that being back here and hearing the struggles that many of the BMT kids we met are having. The fact that Ellee was a perfect bone marrow match for Max is one of the many blessings that we were granted in this situation and, we and the doctors believe, has definitely helped in making things go as smoothly as they have for Max. Many, many other kids are not blessed with sibling matches or sometimes even non-family matches that are "perfect." Thus, we wanted to make an appeal to all of you to consider registering for the National Bone Marrow Donors registry. The National Marrow Donor program is running a campaign from June 8 - 22 that allows the first 46,000 people to register for free. You can register online and a cheek swab kit will be sent to your home. Go to http://www.marrow.org/ for more information.


I am heading home tonight to be with Alex and Ellee. They are doing well but definitely miss Max and the "normalcy" of being all together at home. We all got used to it and spoiled by it again! This is another reminder of the beauty and wonderfulness of the simple things! Ellee has even shown that she is capable of understanding at just 19 months old when things are not the same. Yesterday she looked at the side of the fridge where we had kept a countdown of the days until Max came home from the hospital when we were here for the transplant and said, "Maxi hopital" (as if to say, "when is Maxi coming home from the hospital?") It's amazing how this has impacted all of us...even little Ellee...in so many ways!


A friend of mine took some shots last week of the boys playing basketball in our basement...as you all know by now, their favorite current past-time. I thought I'd include some of the shots on the blog. Max loves them and feels like they fortell of his and Alex's future careers with the NBA! Hope you enjoy them too.


Thanks for your continued support and for keeping us all in your thoughts and prayers. More from home tomorrow or the next time I get a few quiet minutes with the computer!


Peace and love,
Kristi (and Matt, Max, Alex and Ellee)

4 comments:

  1. Thanks and Praise for more answered prayers!!!!!

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  2. This is terrific news, Kristi! So sorry to hear about the families that are struggling that you have met through the hospital. There is nothing so difficult and heart rending as having a sick child. We pray that tonight is your last night in Children's! And blessings on all of the kids in there!

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  3. Keep going!!!!!!!!!

    Thinking of you in Charlotte.

    A

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  4. I can't give blood (lived in England during the "Mad Cow" scare) but I contacted the bone marrow registry and they said I could register. So I'm going to register in Max's honor!

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