LEAVE IT TO ALICIA

THIS BRINGS BACK SO MANY MEMORIES..................  ALICIA IS DOING PRETTY WELL, SHE DID NOT EAT AT ALL YESTERDAY. TINA AND KEITH EVEN BROUGHT HER FAVORITE FROM MCDONALD'S BUT SHE DIDN'T TOUCH IT. (THANKS TINA AND KEITH) 

SHE HAD A NEW PICC LINE PLACED YESTERDAY AND SHE DID VERY WELL. NOW THERE IS TALK THAT IT MIGHT HAVE TO BE PULLED BACK OUT DUE TO THE VERY RARE BACTERIA THAT SEEMS TO STILL BE GROWING, SHE IS ON SEVERAL ANTIBIOTICS, TWO OF WHICH SHE HAS NEVER HAD. THE INFECTIOUS DISEASE TEAM IS ALSO INVOLVED AND ARE THE ONES WHO SWITCHEDTHE ANTIBIOTICS AND SUGGESTED THE LINE BE PULLED. I WAS TOLD BY HER DOCS THAT THERY WOULD DO EVERYTHING POSSIBLE TO NOT HAVE TO PUT HER THROUGH A NEW LINE AGAIN. THEY SHOULD OF JUST WAITED.


I HAVE BEEN HAVING A LOT OF PAIN MY SELF SINCE I HAVE BEEN HERE. MY AWESOME SISTER DENISE IS SENDING SOME MOR OF MY MEDS, I ONLY BROUGHT ENOUGH FOR A WEEK. I ALSO ONLY PACKED AND BROUGHT ENOUGH CLOTHES AND MONEY FOR THREE DAYS.................. LEAVE IT TO ALICIA LOL.

WE DID GET A ROOM AT THE RMH YESTERDAY, THE LIST WAS VERY LONG I AM SO HAPPY WE HAVE SOMEWHERE TO GO WHEN SHE IS RELEASED.

HAPPY MOTHERS DAY TO ALL OF THE MOTHERS AND A SPECIAL HAPPY MOTHERS DAY TO MY MOTHR AND ERIKA. I AM SOOO SORRY WE WILL NOT BE AT HOME TO PEND IT WITH YOU.

MICHELLE AND ALICIA

COKE NOT SPRITE

THE TALK ON THE BMT FLOOR IS ALICIA USED COKE TO FLUSH HER LINE THIS TIME NOT SPRITE..................... THE FUNNY THING IS I WOULDN'T PUT IT PAST HER.  RESULTS CAME BACK AND SHE IS GROWING THREE VERY VERY RARE TYPES OF BACTERIA. THEY PULLED HER PICC LINE YESTERDAY AND PLACED AN IV TO CLEAR HER SYSTEM. WE ARE GOING DOWN AT NOON TODAY TO REPLACE A NEW PICC LINE. SHE HAS NOT HAD ANY MORE FEVERS SINCE WE HAVE BEEN IN CINCINNATI SO THE ANTIBIOTICS ARE WORKING.

WE DID FINALLY GET A ROOM AT THE RMH FOR WHEN SHE IS RELEASED. DOC DAVIES WILL PROBABLY MAKE US STICK AROUND A WEEK OR SO AFTER HER TWO WEEK COURSE OF ANTIBIOTICS WHICH SHE WANTS DONE INPATIENT.

WE DID GET GOOD NEWS YESTERDAY. OUR SCHOLARSHIP WENT THROUGH AND OUR FLIGHT IS OFFICIALLY BOOKED FOR CAMP. WE ARE VERY EXCITED. LAST YEAR I WAS LAYING IN A HOSPITAL BED DURING CAMP, I AM SO GLAD WE GET TO GO THIS YEAR.

MICHELLE AND ALICIA

HAPPY MOTHERS DAY ERIKA........................ WE MISS YOU AND ARE VERY SAD WE WILL NOT BE TOGETHER ON MOTHERS DAY.

Heading to Cincinnati

The Medical transport team is due to be here in an hour from Cincinnati. They told us we could only bring one bag GREAT. We have three. It wasnt like this was planned, I have my fingers crossed that they will make an exception, I do not know which one I could leave.


Results came back and Alicia is growing MANY bugs. I hope she did not mess with her line again with out me knowing. She is feeling a lot better, the antibiotics have kicked in but I believe they will be pulling her line when we get to Cincinnati.

This was sooo not planned, but then again Alicia is the best at surprises. I have a feeling we will be in Cincinnati at least three weeks. Please keep her in your prayers.

Michelle

St Louis

I know it has been a long while since I updated. Alicia is still about the same she is still fighting GVHD and we are still going to Cincinnati monthly to see Doc Davies.

We were due to be in Cincinnati today, but it has not went as planned. We are currrently in St louis Childrens. Alicia is growing gram neg rods and has had a fever as high as 103. There is talk of transporting her to Cincinnati. Please keep her in your prayers once again.

Michelle

long awaited update

Once again I appolgize for not updating sooner. Every time I found time to update something would come up. I am doing this update at 2am, I couldn't sleep and it is nice and quiet.


Our visit to Cincinnati went well, of course we were delayed going and coming due to the weather but I am getting used to that. I so appriciate the organization that gets us there and they do not take any chances.

Alicia is still doing about the same. Doc Davies started Alicia on Ruteximab which is another Immune supressant which she did not need on top of the others she is on but the Steroids was not kicking the GVHD so we are hoping this will help. Alicia's mouth is still horrible and she does not have much hair left. Doc Davies says this is all due to the GVH. She has to get 5 infusions of the Rutexamab, which she has had three already but I still don't see much change yet. It could take weeks or months before we see any improvements I was told. We still have to go to Cincinnati every month so we will be going back in a couple of weeks. She is still eating and drinking very well which is very important. She is on a chicken kick now. She eats chicken twice a day, I don't dare not have chicken for her LOL. Of course everything can not go just right for us, if it did I would probably faint. Two hours after we had gotten back from Cincinnati we were right back at the Emergency room here at home. We had stopped by my sisters to see her new house she had gotten while we were gone. We were only there a short time when I heard Alicia start screaming. Erika was there also and we both ran to see what had happened and Alicia's leg was gashed wide open. She was trying to carry her two year old cousin up the stairs. She might only be two but she is almost bigger than Alicia. Anyway she fell on the last step which had metal on it. It was aweful!!!!!!!!!!! Below is a picture of it just after we got home from the hospital... Sorry if the picture freaked anyone out............

They had to end up pulling up the skin that was left and cutting it off. Alicia did it without shedding one tear. I couldn't watch though. It still looks bad, we have to change the dressing on it twice a day which Alicia also insists on doing herself.

I also had a little set back of my own. The pain in my side had gotten so bad that I ended up in the hospital also. It is determined to be my gall bladder and I was set to go to surgery last week but the Doc only gave me a 40% chance of making it through the surgery due to my liver so I would not let them operate. I am on some pretty heavy duty pain meds until I can see a specialist and anther surgeon to get a second opinion. Until then I am just tolerating the pain. I will update on the both of us as soon as anything new comes along.

Thank you for checking on us, and again I am so sorry for the length between updates.