Thursday, May 28, 2009

Day +57: Settling In But, Hoping To Get Out Soon!

What a trooper our Maxer is...a mom could not be prouder! We have settled in down here for the time being and Max is just handling the transition again like the champ that he is. He is feeling much better. His fever has not returned since yesterday morning and overall he is feeling good. His ANC (the infection fighting white cell count) was up this morning to 190 from 30 yesterday. It's still well below where we'd all like it to be but the improvement is an encouraging sign. We are still hoping (including the doctors) that it was reduced from the gancyclovir and maybe some little virus that he had yesterday, given the fever, etc. Thus, the plan is to monitor things for the next two days and wait for his cultures (blood tests) that were taken yesterday to come back to be sure nothing else is going on. If the cultures are all negative and his ANC continues to improve and gets closer to the 500 mark, we may be out of here on Saturday. We're keeping our fingers crossed and saying our prayers!

Max has been hanging in there enjoying the day laying in bed, ordering from the cafeteria menu (we just ordered some glazed donuts a minute ago), watching Home Along (he's never seen that movie and I'm getting desperate for new ones at this point) and playing Playstation! He's anxious to get home with his brother and sister and bummed that our big day +60 playdate with cousins Will and Ben may have to get postponed a bit. But, as always, he has been extremely mature in his response to everything and has understood why we need to be here and the importance of all of it. He knows, as we do, that with time, things will be back closer to the "way they were" and we will be able to resume all of our normal fun activities.

I am better today, to say the least. Yesterday was one of the low points in this journey for me and I'm glad it's over. You know it's bad when your son and his nurse are laughing because Mommy can't stop crying! I just couldn't talk yesterday without losing it. I knew that we would probably have to do this at some point but, as the days went on, I felt like it was less and less likely and maybe we would make it through without having to do this again. Now that I've been up here with all our familiar doctors and nurses, I feel much better about this and know that it is a normal part of the marathon journey. Bad days happen to everyone around here and everyone around here understands and is compassionate when you have one.

I met a dad in the parent lounge this morning that was just admitted last night about the same time that we were. He cried to me about his 21 month old son who they discovered yesterday has a growth on his liver. They will be doing testing the next couple of days to determine exactly what it is but, he is scared, of course, and struggling, to say the least. My heart went out to him. I have been there and it is the toughest part...the not knowing. I found myself there again yesterday in this process and it is so hard. Your mind just wanders and worries about all things that could be possible. Another lesson in why it's so important to live in the moment...and so hard to do so sometimes. Please keep this dad and his son, Maddox, in your prayers, as well as all the other families and patients on this fifth floor and in this hospital. We could all use them!

We'll write more tomorrow as things progress. Thanks for your continued support and caring. It means the world to us.

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


  1. This is encouraging! I'm so glad that the ANC levels came up so much, and I pray that they continue going in the right direction. I'm sorry that you had such a rough day yesterday. I can imagine how hard it is for you. It's great to hear how well Max is handling this change of events, and it's nice to know that you are surrounded by dr's and nurses who care and understand the spirit as well as being wonderful healers of the body. We will say a prayer for Maddox and his family, as well as for you all. We'll look for updates on the blood work.

  2. He sure is a champ! Please know that there are a lot of prayers being said for Max and all of you, he's actually on our prayer chain at St. Andrew's in Milford! Glad to hear things are resolving - we'll keep praying and thinking of you all, as well as Maddox and his family. God Bless!

    Cheryl Whalen (Jim's wife)


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