September 2006 entries

Friday, September 8, 2006 7:14 PM CDT

Robin called me around 3pm today with some of Alicia's results from her Biopsy last week. I could tell from the sound of her voice that everything wasn't going to be good news.

She said that Alicia would not be eligible for the collectin study I had mentioned in my last update. She said her Aspiration and Biopsy was fine but There is a fish study they also do which they do three different tests which I don't quite understand yet. the first 2 were fine but the third one ( monosomy 77???) detected an abnormality in one of her cells, the one that has to do with forming Lukemia. This all still don't make since to me so if I'm saying it all wrong I'm sorry. Any way the said it was only 4.3% which is low but they want to keep a very close eye on her Bone marrow. They are going to do another biopsy in 3 months to see if there is any changes, hopefully it will go away which robin said it has with a couple of people but if it doesn't or gets worse than they will be considering going to transplant. They are going to do at least 2 more biopsys in the next 6 months so everyone please pray that just goes away!!!!SHE IS TOO YOUNG!!!!!

They are also doing her HLA typing they just need a little more blood to complete the test and then they will put it in the registary to find possible match's for her.

This has been a very bad day for me. Alicia is my very best friend so will everyone please keep her in your prayers.

I hope everyone like the pictures on the front of her page. They are of our trip to Cincinnati last week.

A very worried grandma

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Monday, September 4, 2006 7:17 PM CDT

HELLO,

WE FINALLY MADE IT BACK FROM CINCINNATI. AND ALICIA IS CUB OF THE WEEK HOW COOL, THANKS EVERYONE FOR CARING!!!

THAT WAS A VERY LONG TRIP WE JUST HAD. WE ARRIVED IN CINCINNATI ON MONDAY AFTER SPENDING A COUPLE OF DAYS WITH FAMILY IN KANSAS CITY. ALICIA'S APPOINTMENTS DIDN'START TIL WEDNESDAY SO WE MADE SURE SHE HAD A LOT OF FUN MONDAY AND TUESDAY. MONDAY WE TOOK HER TO THE AQUARIUM IN NEWPORT, THAT PLACE WAS AWESOME WE HAD SO MUCH FUN (ALICIA EVEN PETTED A SHARK)I HAVE SOME REALLY COOL PICTURES I WILL POST AS SOON AS I CAN. TUESDAY WE TOOK HER TO THE ZOO, HER FAVORITE WAS THE MONKEY'S. ALICIA LAUGHED SOOOO HARD AT THEM.

HER APPOINTMENTS ON WEDNESDAY WENT FINE. SHE SEEN DR. WILLIAMS AT 830 AND AUDIOLOGY IN THE AFTERNOON. HER BIOPSY WAS AT 630 THURSDAY MORNING, THAT WAS THE FIRST TIME I HAD EVER SEEN HER BE PUT TO SLEEP, I CRIED WHEN HER EYES SHUT BUT MY TWIN SISTER WAS THERE AND TOLD ME IT WAS OK AND BE STRONG SO I GOT THROUGH THAT PART OF IT. SHE WOKE UP ABOUT 730 AND EVERYTHING WENT WELL DR HARRIS SAID. HER PLATELETS ARE ALREADY DOWN TO 30,000 SO HE WAS EXTRA CAREFUL FOR BLEEDING BUT HE SAID IT WENT FINE. AFTER WE TALKED TO DR. HARRIS AND DR. DAVIES WE TOOK ALICIA BACK TO THE HOTEL FOR A NAP BEFORE HER NEXT APPOINTMENT A 1PM WITH THE DENISTIST (WHICH SHE NEVER MADE IT TO)I WOKE HER UP FROM HER NAP AND SHE WAS BURNING UP. WE STARTED FOR THE HOSPITAL SO I DECIDED TO CALL ROBIN THE RN IN THE FA CENTER AND SHE SAID TO BRING HER RIGHT TO THEM. THEY TOOK HER TEMP AND IT WAS ALREADUY UP TO 101.2 AND IT WENT TO 103 WITHIN THE NEXT 30 MIN. THEY STARTED GIVING HER ANTIBIOTICS THE FIRST WAS SOMEHTING THAT STARTED WITH A Z I CAN'T REMEMBER THE NAME SHE WAS STILL BURNING UP SHE WOULDN'T LEAVE MY LAP THE WHOLE TIME. THEN THEY STARTED HER NEXT ANTIBIOTIC WHICH WAS CALLED VANCOMIOCIN ( I WILLNEVER FORGET THAT NAME) ABOUT HALF WAY THROUGH THE MEDICATION ALICIA KEPT SAYING SHE HAD TO GO POTTY ( YES WE ARE OVER THAT HILL!!!!)WHEN I TOOK HER TO THE BATHROOM I SEEN BUMPS ALL OVER HER LITTLE PRIVATE PART, I OPENED THE DOOT TO GET THE DOCTORS AND TURNED BACK AROUN AND BY THEN THE HIVES WERE ALL OVER HER BODY. EVEN IN HER HAIR. HER EYES EVEN WERE SWELLING THAT SCARED THE CRAP OUT OF ME. THEY STARTED PUTTIN BENADRYL IN HER IV (THANK GOODNESS I HAD THEM KEEP HER IV IN AFER HER BIOPSY)THE BENADRYL TOOK THE HIVES AWAY IMMIDIATLY. FROM THERE WE WENT RIGHT TO THE BMT FLOOR IN THE HOSPITAL AND WE WERE THERE FOR TWO NIGHTS.

SHES FINE NOW, I THINK HER LITTLE BODY JUST HAD TO MUCH AND SHE DIDN'T HAVE ENOUGH FLUIDS IN HER. EVERYONE AT THE HOSPITAL WAS SO MUCH HELP. THEY ARE AWESOME PEOPLE, GRETTA WITH GUEST SERVICES WAS SUCH A HELP, THANKS GRETTA. AND BETH AND ROBIN WERE RIGHT ON TOP OF ALICIA WHEN THIS WAS HAPPENING, THEY HELPED ME A WHOLE BUNCH, THANKS BETH AND ROBIN. THANK YOU TO EMILY AND ANDREA ALSO.

HOPEFULLY I WILL GET THE PICTURES ON HERE SOON I WILL LET YOU KNOW WHEN I DO.

ERIKA GOES TO THE DOCTOR FOR THE FIRST TIME THIS WEEK, I'M EXCITED ABOUT THAT ALSO.

THANKS AGIN FOR MAKING ALICIA CUB OF THE WEEK. THAT IS THE COOLEST.

GRANDMA MICHELLE