The following is an update on Macey's Caring Bridge Page that her mom updated on Saturday, January 23, 2010 12:35 AM, EST

Hi Everyone,

Dropping in to update on Macey for a bit...Our girl has been a real trooper and again I have to say how very proud I am of her. Her legs are still swollen though the doctors are happy with the numbers that they are looking at..they say they are moving down. She has been real good at moving them on and off of the bed, but she is not ready yet for standing up...just way to swollen. She really only says they hurt when it is time to get her to the little girls room. Her legs dangle and I think the pressure really hurts. She doesn't ask for any pain medicines but today the doctor wanted her to get them whether she was asking or not. He really does not want her to be uncomfortable. The nurse and I got her into the bathtub today. Even though she didn't want to (she is a shower girl) I'm sure it must of felt good...?hadn't had a real one since before going up to the PICU.

Still getting tired in the afternoons and today we were able to get some school work done. She hasn't worked on that for a week, though I know her teacher fully understands.

While Macey was in the PICA, they worked to get her sodium levels where they needed them, started her on a very high dose of fluids, the breakdown in her body needs to pass through her kidneys and they needed very much to get it passed without damaging her kidneys. When we came back to the third floor the plan was pretty much the same. Wednesday night had me up all night again as the respirator machine was going off continuously. Thursday the doctors ordered for her to get a chest x-ray.? She didn't get it until later in the day and the results arrived later in the evening. She has the very smallest amount of fluid on her lungs. Since they were happy with the progress of her legs they decreased her fluid intake.

The bump in Macey's road is starting to level out...hopefully not to much longer. Though I do have to say that through this whole deal, Macey has been wonderful with it all. I can only imagine how painful that it was. And the only times that she really said they hurt were through the middle of the nights when getting up for bathroom visits.

As I mentioned early, this is a very, very rare side effect, and could of been very dangerous to her kidneys and liver. The doctors are not sure if this was caused by a Bacteria Infection or the Ara-C chemo. One of the three drugs that she has been taking since her treatments started in Oct. This is the one that she was getting in the high dose. The two more rounds that are planned for her road map also carry the same drug, these rounds also have the amounts high or higher than the 960mg that she was getting twice a day. We are still waiting for the HLA typing that Mark and Melissa needed to get. If either one of them are a match, the plan was to go forward with a Bone Marrow Transplant,? if neither one of them are, then she will not be in the study that we are following right now and it will be discussed to see what they feel is the best plan for Macey. The doctors just are not comfortable enough to take the risk to continue giving the drug she was getting. They could find one other person in study that this happened to, though they can not find any cases that this did happen that the doctors went forward with giving it again. I do have to say that the team of doctors that she has are super and we believe that the best thing that can be done for Macey is being done and will still.

Please continue to keep Macey and the family in your prayers. She really is doing great and the doctor truly are amazed at how great Macey handles all that she is served on her plate. Thank you so much. We really could not get through all this without all the help and support that we are getting from YOU. Everyone, and I mean everyone has been SUPER FANTASTIC. ...THANKS BIG TIME!!

#1 Beef and Beer is tonight. I'm sure that it is going to be a super fun time. Thank you to everyone that has been busy behind the scene to help make it happen. Just know that you are SO SPECIAL and I (We) appreciate it so very very much. I Love You All !!!

P.S. Don't forget how important it is to be a blood donor... While Macey was in the PICU she had to receive 7 transfusions between blood and platelets.

Also, anyone interested to be a bone marrow donor you can find information about it at..........www.bethematch.org

Love, macey's mom marti

E-MAIL AUTHOR

maceytilsner1@hotmail.com