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ALICIA'S JOURNEY WITH FA

Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.



Friday, August 28, 2009

P.S.

I WANT TO SAY A VERY SPECIAL THANKS TO DENISE FOR BEING THERE FOR US EVEN THOUGH SHE IS SICK HERSELF. SHE IS 100% THE BEST!!!!!! ALSO THANKS DENISE FOR KEEPING EVERYONE UPDATED WHEN YOU KNEW I COULDN'T

MICHELLE

a quick update

Hello everyone this is Michelle and I wanted to let everyone know that I am ok. I have been in and out of the Hospital for the past month as Alicia has as well. We were both discharged yesterday and she is staying with Erika. I am still in a very lot of pain and I have a drain tube sticking out of the right side of my abdomin. Alicia seems to be feeling very well again but she is still on anti-biotics for the bacteris they did find. I have follow up appointments all next week and the following so I will let everyone know all of the details just as soon as I find out my self. I just wanted to Thank everyone for so many prayers and ask for them to keep coming!!!


Michelle

Monday, August 24, 2009

*******update******

ALICIA IS OK. SHE IS STILL IN THE HOSPITAL. SH HHE GOT MOVED TO A REGULAR ROOM AND OUT OF INTENSIVE CARE AROUND 6 LAST NIGHT. NOONE IS FOR SERTAIN WHAT MADE HER FIGHT FOR AIR. HER NUMBERS ARE GOOD EXCEPT KIDNEY NUMBERS ARE ALITTLE HIGH. ITS UPSETING MICHELLE A GREAT DEAL THAT SHE CAN NOT BE WITH ALICIA. ERIKA HAS BEEN THERE THE WHOLE TIME EXCEPT WHEN I CAME UP TO GIVE HER A BREAK FOR A FEW HOURS. MICHELLE IS ALSO STILL IN HOSPITAL. THE CT SHOWED FLUID STILL. MULTIPLE DRS SAY ALL THE PAIN IS FROM HAVING 2 SURGERYS BACK TO BACK AND IS TAKING LONGER TO HEAL. IT IS HURTIN MICHELLE A GREAT DEAL THAT SHE CAN NOT BE THERE FOR ALICIA. THEY DID PUT A BIGGER DRAINAGE TUBE IN HER BUT SHE CAN GO WITH THAT AND MAY POSSIBLY GO HOME TONIGHT OR TOMORROW............................................DENISE

Sunday, August 23, 2009

YESTERDAY WAS A TOUGH NIGHT

YESTERDAY ALICIA WAS YELLING FOR HER MAMA AND ERIKA RAN TO HER ROOM AND SHE TOLD HER MAMA COULDNT BREATH.SO ERIKA TOOK HER TEMP AND IT WAS 102* SHE THEN TOOK HER TO THE ER. HER FEVER WENT DOWN AND SHE IS FEELING BETTER NOW. MICELLE IS HAVING ANOTHER TUBE PUT IN SINCE THE NURSE PULLED THE FIRST ONE OUT. FIRST THEY WILL DO A CT TO SEE HOW MUCH FLUID IS LEFT. WELL I AM SO VERY EXHAUSTED FROM SCHOOL KIDS AND GOING FROM MICHELLE AT ST JOE HOSPITAL TO ALICIA AT WESLEY......IT DRAINS A PERSON..............DENISE

Wednesday, August 19, 2009

Michelle is back in hospital

Michelle woke up alot of pain today, more than usual. So my mom took her to the ER and they did a CT and it showed some free flowig fluid in her abdomin. Her dr (she calls him dr mcDreamy) came seen her and decided to have her admitted for further testing. I dont know much right now. Dr mcDreamy said DR reddy (the cancer dr) will be there to see her tomorrow. She has anAppointment with him for friday but looks like she might be in patient. Alicia is still doing really well. Michelle and alicia miss eachother so much. They have only seen eachoter breifly a few times since we got home. Erika stopped by michelles apartment last night for a few minutes with alicia and alicia just rubbed her cheeks and head and said it will be ok and i miss you so much meemaw. Please keep the prayers going please............Denise

Tuesday, August 18, 2009

Doc Update

Michelle is doing better. We are both so glad She is under the care of drs here and not at univercity of cincinnati. Blood work on the 12th was good and kidney is hanging in there. The drtts have her on 2 different types of low doses of diaretics that the drs there took her off the one she was on and since she has been home she has lost 40 pounds of water and fluid weight. Dr may was very nice and very easy to talk to and that he is very cute was nice too. He thinks the pain she is in is from hanig 2 surgerys so close together and its going to take more than usual to heal from that. She is Having an ultra sound friday to make sure. She has an appointment with DR Reddy who will be her cancer dr next. He will decide the next step wether it be chemo treatment or treatment for hep c for liver. They will be able to kill the hep c virus cells in her liver which will keep the liver from being damaged anymore but wont repair it. The drs here say the liver is in its last quietstage but is not totally gone like cincinnati said. Alicia is with me right now and doing very well and i better go see why she is so quiet..........................Denise

Friday, August 14, 2009

Keep the prayers coming---Michelle is in her own bed!!!

The hospital released michelle on wednsday and she has an appointment with her new primary care doc on monday morning. She has 9 prescribtions and is still in alot of pain. She says she dont feel good and still feels something is not right. The dr here said her liver is in stage 4 and kidney numbers are staying stable. That is good news cuz there is a treatment for her liver to try but no way her body could handle it right now. She has also found out she has thyroid problems. because Alicia is doing great. she is seriously getting a little chubby. I kept her last night and she cracks me up because before she finished her miniburger she was asking for some noodles then she had half a burrito and topped it off with another bowl of noodles. She looks really good though. Erika is doing really good. Alicia is loving being with her mom. Thankyou God----------Denise

Tuesday, August 11, 2009

Finally home!!!!!!!!

We got home yesterdayaroumd 1 pm and michelle is in Via Cristi St Francis room 4035 phone number is 316-291-4435. I am taking a very needed break today and staying at home. Tomorrow I am going to be there bright and early to talk to dr so ill try to update tomorrow with news. Since she has been here they have alredy ran numerous tests so i should have lits of info from dr. Alicia is also home and loving it. She is doing relly good and drove her mama crazy with the "are we almost there yet?" question during the 12 hour drive home. I want to thank every one so so much for all the prayers because I honestly believe they are the reason we are where we are today------------------------- denise

Sunday, August 9, 2009

were not in kansas toto

well news around here changes every other hour. yesterday about 5 oclock michelle was told she was being released to go to ronald mc donald house with alicia for a day before we all leave monday cuz michelle will be a direct admit at hospital at home. About 7 the nurse said the dr did not have time to do her paper work before he left so she still sits in hospital waiting and is now told by noon.Other good news is a pilot heard michelles story and scheduled to fly her home today but 2 hours later michelle got a phone call and that flight was canceled and now departure time is 10 am monday morning. we are keeping our fingers crossed. she is feeling better though still in alot of pain. im sure you will be reading an update from michelle soon-----------DENISE

Saturday, August 8, 2009

friday august 8 (I think) 2009

WOW I THINK I FIGURED OUT HOW UPDATE THE SITE.I AM NOT VERY COMPUTER SMART. LETS SEE WHERE TO START. MICHELLE IS HANGING IN THERE, NIGHT BEFORE LAST SHE WOKE UP WITH CHILLS AND SPIKED A FEVER AND AS QUICK AS IT CAME IT WAS GONE. THIS HOSPITAL LEAVES ALOT TO BE DESIRED. SHE PUSHED HER BUTTON AND AN HOUR LATER JUST AS SHE THOUGHT SHE WAS GOING TO HAVE TO CRAWL DOWN THE HALL WAY TO GET HELP A NURSE CAME IN. THEY DID A TAP THENEXT MORNING AND IT SHOWED INFECTION IS BACK ALSO NOW INFECTION IN HER BLOOD STREAM. THE MED THEY ARE GIVING HER TO REROUTE BLOOD TO HER KIDNEY SEEMS TO BE HELPING CUZ KIDNEY NUMBERS ARE STAYING STABLE BUT WE HAVE BEEN TOLD ITS JUST A TEMP FIX TO FIGURE OUT HOW TO FIX KIDNEYS. SHE IS VERY FRUSTRATED AS I AM TOO CUZ WE HAVE BEEN WAITING A WEEK FOR A PILOT TO PICK UP OUR REQUEST TO GET HER HOME. NO LUCK SO FAR. SHE JUST REALLY WANTS TO GO HOME. ON A BETTER NOTE ALICIA IS DOING AWESOME. ERIKA AND ANSHON ARE ALSO DOING AWESOME LEARNIG HER CARE AND ALICIA ONLY HAS 2 DAYS TO MARK OFF THE CALENDAR AND SHE WILL BE HEADING HOME WITH MOMMY AND DADDY. SHE IS GETTING SO FAT. THE PANTS THAT SHE HAD TO HOLD UP WITH A BELT A MONTH AGO ARE NOW HARD TO BUTTON.SHE IS EATING EVERYTHING AND MAKING HAPPY PLATES FOR THE FIRST TIME IN HER LIFE. I WILL NOT LEAVE MICHELLE SO HOPEFULLY AN ANGEL IS SENT SOON TO TAKE HER HOME. I AM GOING TO PUSH THE PUBLISH BUTTON NOW AND IF I GOT THIS RIGHT ILL TRY TO UPDATE AGAIN SOON--------------DENISE

Saturday, August 1, 2009

**** UPDATE****
WE ARE IN NEED OF URGENT PRAYERS, WE ARE TRYING TO GET MICHELLE HOME TO KANSAS AND SHE HAS NO INSURANCE. THEY ARE SAYING IT WILL COST $8000 TO TRANSFER HER TO THE HOSPITAL THERE!!! PLEASE PRAY!!! IF ANYONE READING THIS HAS ANY CONNECTIONS PLEASE SHOOT US AN EMAIL AT KKING5112@AOL.COM. YOU CAN ALSO EMAIL MICHELLE BUT SHE IS NOT ABLE TO CHECK HER EMAIL AS MUCH AS I.

Michelle's kidney numbers were slightly up, which is awesome, but unfortunately she is far from out of the woods. Things are slow with it being the weekend, so not much else to report! Michelle truly thanks all of you for your kind words and prayers!! Keep them coming!

I am at a loss, I do not want to live life without this wonderful woman! She is an awesome human being! I really love her and Alicia. I pray she will be okay! She is not finished here on earth, she has given her whole life to helping others! I know she has grown from this experience and I know Michelle she will in many ways use this horrible time in her life to help others.


Last I heard Alicia is doing very well, being her normal, beautiful self!! She will even be better tonight since MOMMY IS COMING!!!! YEAH!!!

Thanks again for checking in on Alicia and Michelle!

Krisstina

I am here with Michelle and she has asked me to update.

Michelle and Denise are very unhappy with the doctors. Michelle is dictating what i am typing since she can't.
What the doc said to her about the liver is that it is completely gone and it is shut down and it will never work again.
With the kidneys failing also that doesn't leave much of a chance unless they can get the Kidney numbers turned around. They are trying new meds that will help the kidneys by rerouting the blood flow.
As far as her returning to Kansas, this hospital will not release her unless it is hospital to hospital, but to has to be a medical transfer. Which they found out today it costs $8000.00.

Michelle is very upset that she can not see Alicia! She misses her so!
Alicia is doing well and Erika will be here Sunday! Thank god! They both need her so much and I know Erika needs them! Please pray for her whole family along with her! This is all so confusing and stressing! Things have been very unclear until now and is very hard on all of them. Please pray that Michelle gets to go home. They all need that!

Thanks so much!
Krisstina for Michelle!!!