Hello Everyone,

Hoping everyone is doing well and really hope that the morning finds the roads just wet from the snow and nothing more.

Things have been very busy here at the Seashore House. The therapist here are very good and get right down to business. Macey works with Miss April for OT and Mr. Matej for PT. She started with them both on Monday. She seems to like both of them very much and they seem to like her just as much. Sure helps!!!!

During Mondays PT it was decided to but serial casts on Macey to help with the stretching of her muscles. Macey has not been able to stand flat foot. She has been standing on her toes and really bending her knees. Very much not comfortable and not very steady with her balance (try it for just a few minutes...not easy). With the casts she is able to stand more straighter, and with a pair of shoe boots. While the casts are on they are keeping her feet in a more natural position as if she would be standing. The casts have her toes sticking out and they go up to just under her knees. Macey has one leg casted in PINK and one leg in PURPLE. (John Lynch is going to update www.magicformacey.com with some photos.) Tomorrow they are going to take these ones off and recast her again and hope that they can get even more of a stretch on her. I wonder what color or colors she will decide on.

Monday was also busy for Mark and I as we had our meeting with Dr. Bunin. She is head of the Transplant team. She explained EVERYTHING about the transplant that Macey will be getting. It was also decided that Macey will get a Stem Cell Transplant from Melissa and not a Bone Marrow Transplant. It is all so confusing but I think the end result is the same. Because Melissa has 8 of the 10 markers that they would like, they are able to filter out the cells that they want from Melissa for Macey. The bone marrow is taken from the back and they would just keep poking until they would get enough of the marrow. What they would of gotten they would of had to use. Doing a Stem Cell makes it easier for Melissa, she will be hooked up to a machine that will keep taking blood from her and then they can filter out the cells that they want to use, and her blood is then returned to her. Sounds like it is good for Macey this way too as they can keep out the "T" cells or only give her a few. These are the cells that they do not want a lot of them as these are the ones that might keep of a fight of saying that they do not belong in Macey's body. Hopefully the two Tilsner girls are more alike than they think they are and Melissa's cells just act like they belong right there in Miss Macey's body. Lots of prayers everyone...PLEASE!!!

When Melissa was up here on Monday, she said that they took about 13 vial's of blood. Pour girl!! Melissa will also have to get shots in her leg (I think she said her leg) for 5 days before they are going to get her cells. The medicine in the shots help to jump start her marrow and have it make a lot of cells. Much more than the body would normally make. I think that Melissa will need to do her part the day before Macey would need the transplant and hopefully for Melissa they can get everything that they need the first day. If not then she will have to do it the next day.

As for Macey, she has had to get lots of tests. She had to see the Eye Doctor, and the Dentist. She had to get an ECHO and a Pulminary test. (breathing) Today we had to go over to PENN University to have a meeting on Radiation and have another CTScan so they can make a shield for her to cover her lungs and heart. Macey did so Super Great! She does every test that they want so very good. She never really is ever afraid and only asks a few questions. I just can't wait for the day when she gets the day that she can be more normal to somewhat like what she had before.

Macey will have 3 days of radiation, twice a day for about 30 minutes each. After that she will have 4 days of Chemo. She then will have a day of rest and on March 16th, Macey will be given a new marrow from her wonderful big sister!! Macey likes this part as it is called a new birthday and so she keeps telling everyone that she will have two birthdays!!!

We are trying to keep Macey as healthy as we can for Transplant and after transplant the guidelines are very strict. She will be here in the hospital until counts are up. When her body does not need transfusions and she is able to drink and eat. The eating and drinking we are told is hard as either the radiation or the chemo, not sure which one, pretty much kills the lining and the gut of her stomach.

When home it sounds like she is still advised to stay in the house for about 3 months. Crowds are a no-no and healthy is the ticket. She will need all of her shots again. No school at least for 6 months, maybe 9 months. We will be traveling to CHOP once a week for months and then monthly or every other for years. This is with no problems. Side effects are many and some can pop up months or years later.

I just need my little sweet girl to be given back her life and to grow to be a Super old lady.

For the most part Macey is doing better, which it is so nice to get her a little bit healthier before she starts her chemo again. She has been through so much....

Pray for all the kids that have cancer.....and the ones that have been on this unforgettable roller-coaster ride and that they are, and stay cancer free FOREVER. Not sure why anyone of them have to be going through this. They really don't deserve it. They all deserve to have the happy, healthy lives that they had before. We have meet a lot of wonderful families and more important the sweetest bunch of kids....do not know all of the kids names on the floor, but there is Khole (CoCo) who is not even a year old. Joey has the same AML as Macey, he is 7yrs. old...Audrianna, Sammi, Jessica and Jack are some older friends, Oceana and Sarah are some new friends and each of these girls are 9yrs old like Macey. Ricky is a new friend and also friends with Mark's cousin, though he is not new to cancer as this is a relapse, or two for him.....Our friend Eli also has had a relapse. All the boys and CoCo are getting some type of transplant as is Macey.

Our family has meet some wonderful new friends that have had to take this uncontrollable ride. They have one way or another helped us just by listening or giving us some words of wisdom. These families need tons of prayers also...their precious ones have taken this path already or still have lots to endure...Wishes for all of them to be able to continue with the strength that they have been blessed with and that their children stay the survivors that they are...Robert (friend of Macey's dad)...Santina and Katelyn (friends of Macey's cousin Michael)...Sumer (friend of Melissa) ....Jordan (friend of John Lynch and friend of Laura McKeon)....Lauren (friend of John, Macey's dad)

They truly are the best.

God Bless Each and Everyone of Them!!!!

Don't forget to kiss your beautiful children, grandchildren, nieces and nephews.

Love, macey's mom marti