Sunday, March 22, 2009

A Wonderful Visit!

Yesterday afternoon, Max's prayers were answered! He got to visit with Alex and Ellee for about an hour up here! He was cleared on Friday of the isolation that they had him in for a cold he had several weeks ago and was allowed to venture out to the playroom for "private playtime" and to the lobby to visit with his brother and sister. "Wow...that was awesome", were his words as he returned from both visits yesterday!

The next few weeks are HUGE in Max's life, as well as our entire families. We are moving into the bone marrow transplant unit tomorrow morning and final prep of Max's body will start on Tuesday. He will undergo six more days of chemotherapy and we anticipate that he will not be feeling good during that, given what happened with the first round. Then, Ellee will come in for her "harvest" surgery on the morning of April 1st. They will take her marrow to Hoxworth to be processed and bring it up to Max later that day for the infusion through his central line (ie the transplant)! That, obviously, will be an extremely momentous day for all of us.

Ellee also begins final preparations this week. She will receive shots from Friday through Tuesday before the transplant of a drug called GCSF to enable her marrow to produce as many cells as possible since she is so much smaller than Max. She will also have a full physical and some additional blood work done the day before the surgery.

It's all somewhat hard to believe, to be honest. I have definitely experienced a roller coaster of emotions like never before in my life over the last few days and I anticipate that will continue throughout the next several weeks. But, we are hopeful and confident that Max is going to do well. He is so strong and in such great spirits right now that I don't think he could be heading into all of this in better condition, given the state of his body at the moment.

Max got both a full blood tranfusion and platelets this afternoon so, thanks again to all those who donated recently! It's being put to good use for sure.

A good friend of mine from Michigan asked us some great questions about things down here at the hospital that we thought we would share with everyone. We figured some of you might have some of the same questions (see the bottom of this blog entry)

Hope you enjoy the video of the kids getting to see each other yesterday for the first time in 13 days! The video is short and not so great because (of course) my camera was running out of battery! But, it was awesome to be together, even for an hour in a hospital hallway! It felt wonderful and gave us the spirit booster that we all need going into the next phase of this journey.

Please keep the prayers going for Max, Ellee and really for all of us. We need them and so appreciate them!

More soon.

Love,
Kristi (and Matt, Max, Alex and Ellee)


Do you and Matt both stay at the hospital? No, they just ask that one of us stay at a time each night. The bed is like a little pull out couch thing that is just a twin size.

Where do you sleep? Thankfully right in his room with him. It's fairly comfortable. Like a vinyl couch pull out but, I brought our own sheets and blankets and pillows from home which helps a lot.

Is your Mom staying at your house with Alex and Ellee? Well, one of us is home with them each night (I have mostly stayed here but have been home for 3 nights so far...we are trying to switch off every couple days at least). We have a combo of my mom, Matt's sisters and Matt's mom helping with Alex and Ellee during the day.

Are you and Matt both on leave at work? I am but Matt is not. He has been working since this all started and just "flexing" as necessary. He's been in late several days or left early or come up here for appointments during the day before we were admitted, things like that. He is planning to take two weeks off coming up here to help during the last round of chemo and the critical weeks right after the transplant.

Is there a window in Max's room? Yes there is but, it just looks out at the other side of the building, unfortunately with bricks, etc. But, at least we have some sunlight in here! I wish we had a better view and there are rooms with a better view. We'll be having to move fairly soon over into the BMT unit because we are in the overflow area now where the Oncology patients are so, hopefully we'll get a better view then! Although, I wonder if that might make it worse for Max to be stuck in here if he could see how nice it is outside and see people enjoying it, etc.

video

7 comments:

  1. We loved the video! So glad that they got to see each other. Max I really had fun playing sorry and life with you today. You are an amazing little boy. We love you so much - Andrew Jacob Aunt Molly and Umle Jim

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  2. Kristi - ask them for an egg carton type pad for the pull out couch!

    Missy

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  3. Maxer it was great to see you today. Hope you are feeling much better after the blood and platelets. The video of your visit with Alex and Ellee was so cute. We love you very much!

    Kimmy, Benny, and Audrey

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  4. The video was precious..
    Max..so glad Xavier made the "Sweet Sixteen" ...we will all be cheering for them on Thursday...
    We hold all of you in our heart & prayers this week...
    Love
    Carolynn & Bob

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  5. Kristi, I got tears im my eyes while reading this, just thinking about how glad Max was to see Alex and Ellee. What sweet kids. Thinking about you every day!

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  6. Hi there! Krista Ramsey at the Cincinnati Enquirer passed along your comments to her regarding the article she wrote yesterday. I'm Hilary Miller, Caroline Miller's mom. Caroline was diagnosed with severe aplastic anemia back in 1995, when she was seven years old, and had a bone marrow transplant at CHMC (we're from Lexington, KY). Her donor was her younger brother, Laurence, who had just turned two. Caroline made a complete recovery and has grown into a beautiful young woman who's now studying in France (and I miss her like crazy!). Her other brothers are 18 and 15. I know that you must be going through a roller coaster ride right now, but I just want to provide encouragement and support to you and I will be praying for Max.

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  7. Thanks, Hilary. How wonderful to hear your story! We are entering into the most difficult phase yet of this journey as we are in day -8 right now and Max is undergoing his second and final round of chemotherapy in preparation for the transplant from his baby sister, Ellee, next week. It is so wonderful to hear about your Caroline as that is exactly our hope and prayer for Max's future. Thank you for contacting us and for keeping us in your thoughts and prayers. Take care and tell Caroline to enjoy France but come home to visit you soon!

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