Thursday, March 5, 2009

The Plan

We talked to Dr. Davies yesterday afternoon (Max's lead bone marrow transplant doctor) and we now have a plan. It is a mixed bag of good and not so good news. Max's bone marrow biopsy from Monday showed worsening of the bone marrow cellularity so, he absolutely needs a transplant and as soon as possible. We expected this but, still held out hope for something different. Unfortunately, there were no miracles at this point. So, we are checking into Childrens on Monday for our extended stay.

The not so good news of it all is that Max will actually have to be there longer than we expected...probably closer to 8 weeks now. However, that is because of the prepartory regime that they have selected for him which is actually part of the good news. The regime involves an initial four day dose of immune suppressing drugs, followed by eight days of rest before the chemotherapy begins and lasts about a week. So, for the first few weeks of our stay, Max should be feeling pretty good. It won't be until the chemotherapy starts that he will likely have some yucky side effects. Those remain the same as we've described earlier, to our knowledge (ie hair loss, nausea, mouth/throat sores, etc).

The actual bone marrow harvest from Ellee and transplant to Max is scheduled for April 1st at this point. Once Max gets the bone marrow, we'll have to sit tight in the hospital for the next fews weeks, watching and waiting, and hoping and praying that the bone marrow engrafts in him and begins producing blood cells for him without many complications. If this happens, we may be able to come home about 3 to 4 weeks after the transplant.

Once we're home, we'll still be "isolated" for some time but, I am sure it will feel like pure freedom after this long in the hospital! Max will not be able to leave his room while he is in the hospital all this time. It is a specially air purified room and they want him as isolated as possible to prevent him from catching any infection. Given this, we know that visitors will likely be a huge plus for us. I plan to be with Max the majority of the time and I know that it may be challenging to keep this active little 7 year old entertained for weeks in a 12 x 12 room! So, once we settle in next week and begin to understand visitation procedures a bit more, I will post information on the blog here so that you know what to expect if you are interested in visiting. I plan to ask you to contact me via email or cell phone so that I can manage the visiting a little. I do know that we can't have more than 2 visitors at a time and that there may be days that he will not be allowed to have visitors. If you're interested in visiting us in the hospital, check back here soon (next week) for more info.

We have kept busy here at home the last week or so and I've attached a few pictures of what we have been up to. Aunt Sarah and Uncle Ryan came over on Sunday for a Wii Fit Challenge and we had a ball watching Max almost "school" Ryan in how to play the soccer headball game. We also have played lots of basketball on our new Little Tikes hoop in the basement and built almost the entire Bikini Bottom Spongebob Lego set!

Max's spirits are still amazing and he motivates me every day to continue being as positive as possible about this situation. We are commited to making the best of this and getting through it while having as much fun as possible!

Max has also become a bit of a local hero here in Anderson Township. He made the front page of the Forest Hills Journal (our local paper) for the blood drive that Aunt Monica, Mrs. Hyden and Aunt Kimmy have put together. We are so touched and honored by everyone that has taken Max's situation to heart and is donating blood or platelets! It will be amazing to see how many people this will help, including Max.
I am so behind in sending thank you's to everyone that has done something for us! Just know that everything that everyone has done has brightened our days and made this all a little easier for all of us. We can't thank you enough!
Please continue your prayers...they are working!
Love,
Kristi (and Matt, Max, Alex and Ellee)











5 comments:

  1. Kristi-

    Please know that all of the McNerneys are thinking of you guys. Hang in there.

    Love,

    Maggie McNerney

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  2. Kristi..Matt..Alex..Ellee..and of course MAX...

    We are thinking about you everyday....

    Love
    Carolynn and Bob

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  3. We're so thinking of all of you! ... especially, you Max.
    Just wanted you to know that all the children of Overbrook School here in Nashville, are still praying for Max every morning. You know those prayers are being heard!
    You're all so brave and positive. It's a beautiful reflection of who you are.

    Love,
    Bev and Jim

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  4. How brave little Max is!
    You've got a long and trying road ahead and God will continue to give you the strength that you need to get through this.
    Our prayers are with you each and every day.
    Sharry B.

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  5. Hi Max! You and your family are in our thoughts every day. We are thinking of you going to the hospital tomorrow and know that you are going to be strong, fight hard and get home as fast as possible! We will keep checking the blog to hear how you are doing, take care - love, Amanda, Sean, Brendan & Cole

    ReplyDelete

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