WE MADE IT BACK TO CINCINNATI ON SATURDAY. EVERYTHING WENT WELL.
HER PLATELET COUNT CAME UP FROM 19,000 TO 21,000. DR DAVIES SAID HER MARROW LOOKED OK BUT WE ARE STILL WAITING IN THE RESULTS FROM THE FISH STUDY.
DR DAVIES WANTS HER TO HAVE BIOPSY'S STILL EVERY THREE MONTHS BUT SHE WANTS THEM DONE IN CINCINNATI AND NO MORE IN KANSAS.
SHE ALSO WANTS CBC'S EVERY MONTH NOW INSTEAD OF EVERY THREE MONTHS, SHE ALSO TOLD ME THAT TRANSPLANT LOOKS TO BE SOON.
SHE WAS SUCH A LITLLE TERRIOR THERE, (THANKS TINA AND KEITH FOR PUTTING UP WITH US) ALICIA HAS SO MUCH ENERGY, SHE WORE JO AND JACY OUT!!!!!!
I WILL UPDATE MORE AFTER WE GET THE REST OF THE RESULTS. THANK YOU SO MUCH FOR CHECKING ON HER.
MICHELLE
Hello Michelle and Alicia,
how did the biopsy go....been thinking about you. Love you heaps,
Charisse
Charisse Howard-Jones/The Prayer bears
Adelaide, SA Australia - Wednesday, November 21, 2007 6:48 AM CST
WOW IT IS SO HARD TO BELIEVE THAT ALICIA WILL BE 5 IN TWO DAYS!!!!!!! SHE IS GETTING SO BIG (NOT REALLY).
WE HAD A BIRTHDAY PARTY FOR HER LAST WEEKEND AND SHE HAD SO MUCH FUN. I NEVER KNEW HOW MUCH DORA THINGS ONE PERSON COULD HAVE, BUT I THINK ALICIA HAS EVERY DORA ITEM AVAILABLE.
WE LEAVE FOR CINCINNATI ON THE 28TH. ALICIA IS GOING TO HAVE ANOTHE BIOPSY, AND THIS ONE WORRIES ME (SO DID ALL THE REST) BUT AS WE KNOW THE LAST ONE SHE HAD DONE IN CINCINNATI WAAS THE ONE WHICH SHOWED THE ABNORMAL CHROMOZONE, WISH US LUCK ON THE RESULTS.
HER LAST CBC WHICH WAS DONE TWO WEEKS AGO SHOWED HER PLATELETS HAD DROPPED TO 18,000 SO THAT HAS ME WORRIED ALSO.
WE HAVE A PROGRAM HERE IN KANSAS WHICH IS CALLED SHARE THE SEASON, THEY DO AN ARTICAL ON A FAMILY EVERY SUNDAY IN THE PAPER AND LOCAL NEWS, AND ALICIA WAS CHOSEN TO DO THE LEAD STORY TO START OFF THE SEASON. I THINK THAT WOULD BE REAL NEAT.
HOPE EVERY ONE IS WELL AND CANDACE YOU, HALLEY AND JESSE ARE IN MY PRAYERS, WE WILL SEE YOU SOON.
JO AND JACY... I CAN'T WAIT TO SEE YOU WE WILL BE THERE SOON.
MICHELLE
Love and hugs,
Eva and Rodney
www.caringbridge.org/mi/rodneyreeves, - Wednesday, October 31, 2007 6:03 AM CDT
We finally heard from Cincinnati with Alicia's results and there is no change. (THAT IS GOOD NEWS!!!!!)
Her blast count was at 1%, which it went down from 3% at her last biopsy.
Her Platelet count is still low, it was at 26,000, but he rest of her counts looked good.
I am sooooo relieved. They still want to do another biopsy in 3 months, hopefully that one is good like this one so we can go to every 6 months, little Alicia is getting upset even more every time we have to have one.
Anshon is doing well, he is getting so big, he is saying dada now, Erika keeps trying to get him to say mama but he hasn't said it so far. He giggles every time Alicia is around him, it is so much fun watching them two together.
Thank you all so much for keeping Alicia in your prayers, it means the world to us.
Michelle
Just checking to see if you have any results yet. Hope all is well.
Kristin Young
Gorham, me usa - Friday, August 31, 2007 5:56 PM CDT
Friday, August 24, 2007 7:19 AM CDT
EVERY THING WENT WELL WITH ALICIA'S BIOPSY YESTERDAY. SHE WAS SUCH A BIG GIRL WHEN THEY PUT IN HER IV, SHE DIDN'T EVEN CRY THIS TIME.
NOW IS THE HARD PART.....THE WAITING......THE WEEK THAT IT TAKES TO FIND OUT ANY RESULTS SEEMS LIKE A MONTH. I JUST PRAY THAT THE RESULTS COME BACK OK!!!!!! I DID FIND OUT THAT HER PLATELET COUNT WAS DOWN TO 28,000 AND THAT HAS ME VERY WORRIED.
ALICIA IS DOING FINE AS OF NOW, WE DID HAVE TO MAKE A TRIP TO THE EMERGENCY ROOM THIS WEEK END, ALICIA WAS OUT SIDE RUNNING AND SHE STUBBED HER TOE WHICH TOOK OFF THE TOP OF ONE TOE AND HER TOE NAIL, OF COURSE I FREAKED... WITH HER PLATELETS SO LOW IT WAS HARD FOR ME TO GET IT TO STOP BLEEDING, I HAD THE HARDEST TIME WITH JUST A STUBBED TOE, SO I DON'T KNOW HOW I AM GOING TO GO THROUGH A TRANSPLANT WHICH WILL BE A 100 TIMES HARDER THAN A STUBBED TOE.
ANSHON IS GETTING SO BIG, ALICIA AND HIM ARE SO CUTE WHEN THEY PLAY TOGETHER, ALICIA CAN GET HIM TO GIGGLE SO HARD, I LOVE WATCHING THEM TOGETHER.
DEPENDING ON THE RESULTS FROM YESTERDAY'S BIOPSY HER NEXT ONE WILL BE DONE IN CINCINNATI AT THE END OF NOVEMBER. I WILL KEEP YOU UPDATED WHEN I FIND OUT ANY RESULTS.
MEE-MA
Tuesday, August 14, 2007 4:07 PM CDT
Hello,
Sorry it has been so long since I have updated on Alicia. We are getting ready to leave Camp SunShine right now. The hardest part about camp is the good-bye's.
Alicia had such a fun time. I know she drove every one crazy. She went up to every one at least ten times each and gave them a hug. She danced so much at the custume ball that I was tired from just watching. Alicia is such a happy litlle girl she never slows down. ( I promise every one I did not teach her how she was dancing). We are going to miss every one so much. I am already looking forward to next year.
I found out today that Alicia's next Biopsy is going to be Thurday, August 23rd, Dr. Williams said he wanted her next one done in Cincinnati in November depending if it is not sooner from the results of this one coming up next week. I have this felling we are getting very close to transplant. But I have hope now, Camp has helped me alot!!!!!!
I will keep every one updated on her Biopsy results just as soon as I get them.
Mee-Ma Michelle
HI,
I was just looking through the family pages and found Alicia's page. Looking at her pictures, I remember the week you and your sister spent at Camp Sunshine and how endearing and sweet Alicia was. She never went by without saying and signing "I LOVE YOU!!!". (I was the "older woman" who was a counselor for the FA Teens when you attended camp.)
I hope that you are all doing well and that someday we can meet again at Camp Sunshine.
Mary Ann Gormley
Upton, MA 01568 - Monday, July 30, 2007 11:32 AM CDT
Praying that you all have a wonderful weekend. Hope Alicia is enjoying her summer, and enjoying spending time with her baby brother.
Jennifer from the prayer bears
Bridgeport, Texas - Saturday, June 23, 2007 4:11 AM CDT
Hello Michelle,
Been thinking about you!
Love Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Monday, May 21, 2007 6:39 AM CDT
Monday, May 28, 2007 1:13 PM CDT
Sorry I just ot to a computer to update everyone on Alicia's results.
GOOD NEWS!!!!!!!!! They didn't show any increase in her Blast Counts. And still no show of the Monosomy Seven showing back up. I am so happy. Robin from Cincinnatti said they would be calling me next week and letting me know if Dr. Williams wants the Biopsy repeated in 3 months or if we get to wait 6 months this time. Thank you so much for every ones support I couldn't get through this with out you.
Michelle
Tuesday, May 8, 2007 3:44 PM CDT
Hello Everyone,
Sorry i haven't updated on Alicia in a while, we have been so busy with the new baby. He is getting soooo big, I will put more recent pictures soon.
Alicia is doing fine at the moment, she has another biopsy coming up on the 16th of this month, hopefully everything will come out fine like the last one and move her transplant to a much later time. I will let every one know the results just as soon as I get them.
Grandma michelle
Alicia..
I hope you are doing well and having lots of fun with your new baby brother!!
We think of you often, just haven't posted much!
Love and prayers,
Eva and Rodney~The Prayer Bears~
www.caringbridge.org/mi/rodneyreeves, - Sunday, April 29, 2007 1:10 PM CDT
Hi Alicia and Family,
My name is Jenna and I came across Alicia's site. Alicia is an inspiration and a fighter. Alicia is in my thoughts and prayers.
www.caringbridge.org/canada/jenna
Jenna
Kamloops, BC Canada - Thursday, March 29, 2007 0:10 AM CDT
Thursday, March 22, 2007 11:24 AM CDT
Hello everyone,
Lil Anshon is one week old today. He is doing so well. Erika is taking him to the doctor this afternoon for his one week check up. He is such a good little baby, Im at Erikas now watching him while she goes to the doctor to get her staples removed.
I was right about Alicia being jelous. She has been staying with me since Lil Anshon was born, Erika is still moving very slow and Alicia is such a little busy body. We were over Erika's Sunday and the very first time I picked up lil Anshon Alicia wasn't having it. She jumped up right in my lap and wouldn't get down so I had to put the baby down. We are going to have to work on sharing Mee-ma. She also tried to jump off the porch and Erika had to catch her, Erika said that felt like she was ripping open inside. Hopefully by next week Erika will be feeling better so Alicia can go home. She starts back to school Monday, so I think we will spend Sunday again so Alicia can get used to being around the baby and being careful with Erika.
We finally found a Pediatician here that we like, she has a lot of special need children as patients and she is very eager to learn all she can about FA. That made me feel at ease finally.
I will update later, the baby is stirring so I think he might need a dry diaper, ( its so weird having a little boy)
I hope all is well with everyone.
Michelle
Thursday, March 15, 2007 6:43 PM CDT
HELLO EVERYONE,
I BECAME ANOTHER MEE-MA TODAY. ALICIAS LITTLE BROTHER WAS BORN THIS MORNING AT 8:30 AM. ERIKA DID JUST FINE DURING HER C-SECTION. "LIL ANSHON" IS SOOOOOO CUTE. HE WEIGHED 7 LBS 15 OZ.
OF COURSE THE FIRST THING I DID WAS COUNT HIS FINGERS AND THEY WERE ALL THERE. HE DOESN'T SHOW ANY SIGNS OF FA THAT I COULD SEE, ALTHOUGH IM NOT GETTING ANY HIGH HOPES UNTIL HIS RESULTS COME BACK.
THE TEST IS THIS EVENING. MY SISTER IS TAKING ALICIA TO THE HOSPITAL TO SEE HIM. I KNOW SHE IS GOING TO BE SO JELOUS.
MY FRIEND IS GOING TO PUT PICTURES OF HIM ON ALICIAS SIGHT THIS EVENING SO HOPEFULLY EVERYONE CAN SEE HOW CUTE HE IS. ( YES IM A PROUD GRANDMA)
MICHELLE
Sunday, March 11, 2007 6:26 PM CDT
Hello.
well we are in the waiting stages again. alicia is going to have another biopsy done in 2 months, hopefully they stay the same as last which said her monosomy 7 had dropped low enough for it to be counted and her blast count was down to 2%. i know that the monosomy can come right back so im not going to get my hopes up about it staying away because i have not had very good luck lately on having high hopes.
alicia and me did a live interview for childrens miracle network yesterday. i was kinda scared but alicia was herself and took everyones attention. i wish i had all her energy.
the count down is on... im going to be another mee-ma in 4 days. i am sooo excited. the first thing im doing is counting for 5 fingers. i just know he is going to be so cute. erika is having a c-section at 8:30 on thursday the 15th.
ill put pictures on alicias site just as soon as i get them.
michelle
Thursday, February 22, 2007 10:38 AM CST
Hello,
Sorry I haven't updated on Alicia in a while. I still have troubles finding a computer to use.
We made it to Cincinnati safe. Our first flight went just as planned, we had a layover in Minnesota, and got to see Dianne and Michelle. That was soooo cool. Dianne fixed us an awesome Breakfeast. Thanks so much Dianne. Alicia was (and still is) very excited and wired. She knows she isn't at home and is testing mee-ma alot. I guess she's just beibg a tipacal 4 yr old.
We got great news, Alicia's biopsy results came back and they were awesome. Her blast count was confirmed at 2% and the abnormal Monosomy seven went away for now. This is all very hard to believe. Just within the past 2 months I went from being told my baby was going to transplant to finding out her counts are fine for now, I truely believe that it was a wake up call. Hopefully I will be able to handle it a little better when the time comes for transplant.
We have a couple of appointments in the morning before the family meeting on Saturday and Sunday. I will let everyone know how they turn out.
Thank you everyone so much for all the prayers you have said for Alicia.
O yea I almost forgot. Erika is having the baby on the 15th of March at 8:30 am. I am so excited to finally get to hold my grandson.
Grandma (X's 2 almost) Michelle
Wednesday, February 7, 2007 2:13 PM CST
Hello everyone,
Sorry I haven't been updating on Alicia but I have had problems getting accsess to a computer.
She is having her follow up Biopsy in the morning. Thursday the 8th. This is the one that determines if she goes to transplant or not, This is going to be a very long weekend.
We are going to Cincinnati at the end of the month for the meeting and they are going to do alot of tests on Alicia, I will keep everyone posted.
Erika is getting huge!!! only one month left til im a grandma again. I am so excited.
Michelle
Just wanted to let you know I am thinking about you as you get Alicia's results and so on!
Love Charisse
(FA Adult)
www3.caringbridge.com/oceania/charisse
Charisse Howard-Jones/The Prayer Bears
Adelaide, SA Australia - Saturday, February 10, 2007 6:19 PM CST
all always.
Thursday, January 4, 2007 10:57 PM CST
Today has been a great day!!! I feel like a ton of bricks has been lifted off my shoulders. The last week has been a complete mess and today I haven't felt a bit af stress. I am so thankful for all your prayers, GOD IS SO GREAT!!! I know that alot of people all over the world has been praying for Alicia this past week and all the prayers were answered. Thank you again so much.
I have to admit though that I have been a little mad. I can't believe that a pathologist here in Kansas could make so bad of a mistake as he did. My whole world has been turned upside down because of someone reading her tests wrong, I even gave a notice at my job and started to exit Alicia out of school. I can say that all the calls I made today with the news of Alicia felt way better than the calls i made last week. I'm not mad anymore though, I forgive who ever the pathologist is. All that matters is that Alicia is fine for now and all the rest don't matter.
Dr. Williams did say that he wants to do another biopsy in the middle of Febuary just to make sure that the results are the same as he seen Wensday. I will not loose my hope and faith that they will be fine.
I believe God was sending me a message or maybe a wake up call, I know that no one is promised tomorrow and I should make every day count that I get to spend with Alicia. Who knows when her time will come for transplant and I believe that he was telling me to be prepared next time, and maybe it will be a little easier to accept because this totally freaked me out. BUT MY BABY IS FINE FOR NOW.
I am so glad that I won't be missing my grandsons birth. That was bothering me alot also but I knew I had to focus on Alicia but now I will be here!!!
I want to thank everyone again so much for all your support. I wouldn't of been able to get through that without you, Thanks so much.
I want to give a big thanks to Krisstina, Dianne, Charisse, Teresa, Kelly, Lisa, Robin, Suzanne, The prayer bears, Dr. Williams, Roxanne, Sallie, my mom, Kayla, my whole family and my FA family also. I hope I didn't miss anyone, I am just sooooooooo happt.
Grandma michelle
Wednesday, January 3, 2007 7:09 PM CST
WAIT TIL YOU READ THIS!!!!!!
I AM A TRUE BELIEVER THAT GOD GIVES MIRACLES!!! HE HEARD ALL THE MANY PRAYERS THAT EVERYONE WAS PRAYING FOR ALICIA. GOD IS WONDERFUL!!!!!!
I GOT A CALL FROM DR. WILLIAMS AT 4 PM TODAY AND I COULD HEAR THE SMILE IN HIS VOICE. HE SAID THAT HE GOT THE SLIDES FROM KANSAS AND HIM AND DR. DAVIS BOTH AGREE THAT THE PATHOLIGISTS REPORT IS NOT CORRECT. HE SAID THAT HE DOES NOT SEE ANY SIGNS OF LUKEMIA!!!!!! HE SAID HE WILL DO A FOLLOW UP BIOPSY IN FEBUARY JUST TO MAKE SURE BUT HE SAID ALICIAS TRANSPLANT IS CANCELED!!!!! THIS IS A MIRACLE!!! I AM SOOOOO HAPPY!!!
I WILL UPDATE MORE TOMORROW BUT I JUST WANTED EVERYONE TO KNOW.
THANK YOU SO MUCH FOR ALL YOUR PRAYERS, YOU ARE THE REASON SHE IS NOT GOING TO TRANSPLANT.
MICHELLE
Tuesday, January 2, 2007 7:08 PM CST
Today has been a little better for me. Im taking it one day at a time. I know that Alicia needs me to be strong so I am getting stronger every day.
I didn't celebrate New Years, Alicia and me went to bed early and skipped any celebrations. In 2008 we will have a big celebration and make up for this years.
I caught myself gettin upset this weekend and little alicia went and got her pillow and crawled up in my lap and rubbed my leg and said its ok meema, at that moment I thought to myself who is supposed to comforting who? She needs me more than ever now so I promised to get myself together, this is going to be a hundred times harder for her not me.
Cincinnati called today and said that her blast count was at 7% and she might need Chemo before her transplant to get her Lukemia in remision, so we might have to go sooner than we thought. They also said they found 2 possible matches in the national donor registary so that is a bit of good news.
I will keep everyone updated on any new results. I want to thank everyone for all the support you have given me in the las couple of days. I couldn't do this without friends like you.
Michelle
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