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.

CINCINNATI

WE ARE HEADED BACK TO CINCINNATI MONDAY. WE WERE RELEASED FROM THE HOSPITAL ON SUNDAY, FINALLY. ALICIA'S BLOOD SUGARS HAD GOTTEN AS HIGH AS IN THE 900'S AND HER SODIUM WAS DROPPING WHICH IS A BAD SIGN SO THE DECISION WAS MADE TO FINALLY GET HER SUGAR UNDER CONTROL. NOW SHE IS GETTING 2-6 SHOTS OF INSULIN A DAY. IT IS SO FUNNY BECAUSE ALICIA GIVES HERSELF HER OWN SHOTS. SHE IS VERY GOOD AT IT. ALSO IN THE HOSPITAL SHE DECIDED SHE WOULD DO HER OWN VITALS ALSO. THEY JUST ROLLED IN THE MACHINE AND ALICIA TOOK OVER. SHE PUT THE BLOOD PREASURE CUP ON TOOK HER BLOOD PREASURE THEN TOOK HER TEMPATURE AND SHE EVEN HAD TO HOLD THE STETHSCOPE FOR THE DOCTOR.


ANOTHER TEST CAME BACK THAT SAID ALICIA IS ALOS VITAMIN D DEFICIANT. HER GVHD IS STILL VERY HORRIBLE IN HER MOUTH AND THE STEROIDS DO NOT SEEM TO BE WORKING. THEY ARE CAUSING MORE DAMAGE THAN GOOD AS TO WHAT I SEE. HER HAIR IS ALMOST ALL FALLING OUT AGAIN. I AM GETTING VERY WORRIED ABOUT ALICIA AGAIN. I AM VERY GLAD WE ARE GOING BACK TO CINCINNATI. HOPEFULLY WE GET SOME ANSWERS SOON.


ALICIA IS ALSO GETTING HER PICC LINE REPLACED. IT IS INFUSING FINE BUT NO ONE HAS BEEN ABLE TO GET BLOOD TO DRAW SO SHE HAS HAD TO BE POKED TO GET ALL OF HER TESTS DONE WHICH IS DEFEATING THE PURPOSE OF HAVING A PICC LINE. SHE IS NOT HAPPY ABOUT HAVING TO GET A NEW ONE, SHE SAID SHE WOULD RATHER GET A SHOT EVERY TIME BUT SHE IS ALSO STILL ON NIGHTLY FLUID SO THE PICC LINE IS A MUST STILL.


I WILL UPDATE AFTER WE GET BACK FROM CINCINNATI. PLEASE KEEP ALICIA AND ALL OTHER KIDS WHO ARE STILL BATTLING TRANSPLANTS IN YOUR PRAYERS

Results from Cincinnati

Mommy Daddy, Dominic ( Anshons oldest son ) and Alicia

Alicia and Dazzsha ( anshons youngest daughter )

There really is not much change. Alicia's GVHD in her mouth is still horrible. I am very concerned, it has been there several months now and I have not seen much improvement. She is still on the same amount of Steroids, Dr Davies said it will be a while before she starts any weins. She also got a Bolus of Steroids while we were there but it didn't seem to help either. Dr Davies said as long as she is eating and drinking then it will take a while to get her mouth back to normal. The eating issue is no problem though, Alicia eats non stop all day it seems. I did have a meeting with a Dietitian, Amy, and she let me know the best way to keep Alicia away from sugar and carbs because of her high Glucose.

One question I did ask was how long would it be until we didn't have to come every month and the answer to that was we would have to come every month for at least the next six months, she also said that Alicia would not be starting school this fall but she did say we will be able to go to Camp Sunshine!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was so happy to hear that. She said everyone there is a lot more cautious. We are sooooo excited. Denise and her daughter Cassie are going with us. Denise has always been such a huge support for us and her and Alicia are very close so I am glad she will be coming with us!!!!!!!!!!!!!!!!!

Our trip home was way more smoother than the way there. The fog was pretty bad but we made it sage

Very determined FA Mee-Ma

This has been a day I am glad is over. I have decided that FA does have some benefits, it got us out of a speeding ticket today. Although I would rather pay a million tickets than Alicia have FA.

It started this morning, I am sure since I update so often that everyone knows our trip to Cincinnati got canceled at the last minute last week and was reset for Today. LOL surely I updated. Anyway Alicia and I woke up late to start our day of traveling off, my dad arrived 30 minutes early also to take us to the airport so that even made us rush around a lot this morning.

We got to the airport with plenty of time to spare, but the thick fog outside had me worried that the flight would be cancelled again. We got to the airport and the receptionist was checking the progress of the plane and it showed they had landed 120 miles east of our home town due to ice pellets in the fog at the altitude they needed to fly. To make matters worse they could not see the runway to land due to the fog. The pilot said he would wait an hour and let the fog diminish and try to land in Wichita again. Well he tried again only to circle in the air right above me but had to return to the airport because he still couldn't land. So my dad, Alicia and I loaded the car back up and we headed east for a two hour road trip to get to the plane. DETERMINATION!!!!!!!!!!!!!! After we were on the road for about an hour I heard sirens and turned around and a highway patrolman was pulling my dad over. He told my dad he was doing 81 in a 65. Once again the Determination came out of me. I started talking my dads way out of a ticket and let him know I was trying to get my granddaughter to a medical flight in Parsons Ks. Alicia's charm came out and he told my dad to slow down and he let us leave. Finally in the air we landed in St Louis as always to refuel and then more of my bad luck came. We were told we would have to stay in St Louis over night and we couldn't fly to Cincinnati til in the morning GREAT!!!!!! They loaned me a truck and off to the comfort inn we went. So we are stuck in St Louis til the morning. I just want to go to bed and wake up tomorrow!!!!!!!!!!!!! I will update about the trip if we ever make it there.


Mee-Ma