Alicia's Journey with FA

Going Home

2010-12-14T10:26:00.000-06:00

We Finally are going HOME!!!!!!!!!!!!!!!!!!!!!! Alicia is still having the issues with her stools and eating, but Doc Davies said we are homeward bound. We WILL beat Christmas to Kansas!!!!!!!!!!!! our flight leaves in the morning I will let everyone know that we made it home safe. We have to be back in Cincinnati at the end of January.

Mee-Ma

Hurry up and wait..............

2010-11-14T09:33:00.000-06:00

Still no answers on what is causing all of this......... Echolia has showed up in her urine but not in cultures yet.... Kansas has not identified what organisms are growing and the cultures here are still neg. What ever it is or was the antibiotics must be doing their job. She is still not eating or drinking and she is sleeping alot. Stools are still pure water, yesterday she didn't make it to the bathroom and pooped on the floor like a puppy. My nails have encountered so much poop in the last 5 days,,, I don't do well with poop and Alicia thinks it is so funny.

its so hard to believe she will be 8 years old in 4 days. time is going so fast i wish it would slow down so we can be together longer.

mommy and daddy Alicia misses you so much. please kiss my boys for me and tell them every day that mee-ma loves them.

Michelle

quick update

2010-11-10T20:47:00.001-06:00

Looks like we will be in Cincinnati but not how it was planned. About 3 am this morning Alicia was taken by ambulance to our hospital here at home. Her fever was at 104.7 and she starting seizing. An air ambulance from cincy is on its way now to transport her. Her bands are at 56% which means she is trying to fight an infection. Her pic line was pushed all the way in to her right side of her heart. That's how infection started. She will have to spend her birthday in the hospital which is a week from tomorrow. I will update more from Cincinnati. Mee-ma

Almost "8"

2010-11-02T19:27:00.000-05:00

I can not believe that my baby girl is almost "8" years old... there were so many times I doubted that she would make it this far but I proven wrong. God is good!!!!!! I know it has been a long time since I updated, we lost a little boy named Nicholas from FA and I have been kinda depressed. His family is very dear to me.

2 weeks and she will be "8". We leave for Cincinnati next week to see Doc Davies and I so hope we make it back home before her Birthday. We are set to come back on the 15th and her Birthday is the 18th... so close.

She is doing very good at this point. We are on a roll and have not been admitted in a month. (knock on wood) She is still on every med and has not been weened off any. She is still getting Chemo (Rituximab) every week and fluids every night and High Steroids and Bacterium and Antibiotics and Seizure med and Tacro and Blood pressure med. My kitchen looks like an actual Pharmacy.

She was so cute on Halloween. She was a little witch. I will post pictures as soon as I get to Cincy and Tina helps me. (love ya girl).

Shel

3infections later

2010-09-13T09:10:00.000-05:00

The Mri went good and they found access for another picc in her right arm. The MRI also showed a lesion on her 7the right rib but the docs don't seem to worried. They are just goning to keep a close eye on it and do more frequent scans. I am worried though so it definitely wont be put on the back burner.

In the mean time all of her cultures are coming back positve for gram pos rods. They ha vent identified the type of bug it is yet but the 5th 6th 7th 8th and 9th are positive. Her central line was pulled on the ninth and replaced with the picc So far all cultures from the picc are negative. I pray they stay that way or the picc comes out also.

Her spirits are pretty good as long as I have spaghetti for her. I am on my third batch. I have to go to the RMH and cook it, she does not like the one on the menu. She also gets pretty mad if any calls her Alicia, she isw now Princess and she will not answer to anything but Princess. That is something my mom started and NeNe and it has went way overboard. O well if thats what makes her happy.

We will probably be inpatient another two weeks and then out patient A couple of weeks also. I JUST WANT TO GO HOME!!!!!!!!!!!

She misses Mommy and Daddy real bad. She talks to them every night from her cell phone. YES she has a cell phone. NeNE gets the worst of it though cause she calls her every morning when she wakes up and they are an hour ahead in Kansas.

So the plan for us is to hurry up and wait. Hopefully no more positive cultures come!!!!!!!

Mee-Ma

IN CINCINNATI ONCE AGAIN

2010-09-06T14:04:00.000-05:00

I KNOW IT HAS BEEN A VERY VERY LONG TIME SINCE I UPDATED. THE SAYING IS THE FEWER THE UPDATES THE BETTER SHE IS. NOT IN OUR CASE.... WE HAVE BEEN IN THE HOSPITAL MOST OF THE PAST TWO MONTHS AND I DID NOT HAVE MY LAP TOP.

SHE WAS MED FLIGHTED YESTERDAY FROM WESLEY HOSPITAL BACK HOME AND WE ARE CURRENTLY IN CHILDREN'S IN CINCINNATI. WE ALREADY MISS THE NURSES FROM HOME, ALICIA WAS FINALLY STARTING TO BE NICE. WE ALSO HAVE VERY GOOD NURSES HERE, AND ALICIA IS VERY WELL KNOWN.

ANYWAY THE REASON FOR BEING MED FLIGHTED IS DUE TO ANOTHER LIN INFECTION. THIS TIME IT IS YEAST, WHICH I HEARD IT IS NOT EASY TO GET RID OF. THIS IS THE SECOND INFECTION SINCE THIS LINE WAS PLACED. THE SURGEON WHO PLACED THIS LINE SAID IT WOULD BE NEXT TO IMPOSSIBLE TO PLACE ANOTHER ONE BECAUSE ALICIA'S MAIN ARTERIES ARE COLLAPSED. SO RIGHT NOW THE BMT DOCS AND SURGEONS ARE FIGHTING OVER IF IT SHOULD BE PULLED OR TRY TO SAVE IT. YEAST IS VERY HARD TO GET RID OF AND STICKS TO LINES. IF THE LINE IS PULLED THERE IS A CHANCE THAT ANOTHER ONE COULD NOT BE PLACED AND SHE WOULD LOOSE ALL ACCESS AND THAT IS NOT GOOD.

THE PLAN NOW IS TO DO AN MRI IN THE MORNING TO LOOK AT HER VEINS AND SEE IF THEY WOULD BE ABLE TO REPLACE IT. IN THE MEANTIME THE ARE RAISING THE DOSE OF ANTI FUNGAL GOING THROUGH HER LINE IN HOPES TO FIGHT THE BACTERIA.

I AM NOT SURE HOW LONG WE WILL BE HERE THIS TIME BUT IT SOUNDS LIKE IT MIGHT BE A WHILE. I PROMISE TO UPDATE WITH ANY NEW PLANS.

MEEMA

alot has happened

2010-07-11T14:30:00.000-05:00

Once again I am sorry about the time in between my updates. I hope everyone is doing well and many prayers to the ones who are not.

We got to attend Camp Sunshine this year. Alicia and I both enjoyed oursefs soooo much. It was a much needed time away besides being in the hospital. We seen many old friends and met many new ones. I was very very nervous and held my breath many times. The worse was having Alicia in the airport in Chicago. I kept her very close to me, and she was transported by wheel chair from gate to gate. We seen an old friend from camp in the Washington airport and he sat behind us during the flight from Washington to Portland. His name is Zac and he is 24 with FA. Alicia just loved him. Alicia also connected very well with a girl named Saundra, she met her three years ago at camp and remembered her right away. And of course her favorite person of all times was there, Keith, no one ever compares to him. I was very excited to meet Russ Holden from Caddy for a Cure, he was there with his wife.

All went well the week we were there but of course when it comes to Alicia nothing goes so smooth. Two days after we were home she spiked a fever and had a HORRIBLE cough. We took her to the emergency room and they ran tests and it came back that Alicia had contacted the Paraenfluenza three. That set us four days in the hospital but all is well now.

We will be back in Cincinnati on the 22nd for a week. cross your fingers its only for a week.

Thank you for all of the support and prayers.

Michelle

UNEVENTFUL NIGHT

2010-05-11T09:36:00.000-05:00

EVERYTHING SEEMS TO BE GOING WELL. ALICIA ACTUALLY BEHAVED HERSELF AND HAS NOT PULLED ANY SURPRISES. THEY PULLED OUT HER PICC AND NO SHE HAS A REGULAR IV TO HELP CLEAR HER SYSTEM. ALICIA IS TELLING EVERYONE NOW THAT THEY PULLED HER LINE BECAUSE SHE HAS SPIDERS INSIDE OF HER. THE PLAN WAS TO REPLACE THE PICC AFTER 72 HOURS BUT DOC DAVIES SAID SHE IS GOING TO AIT LONGER IF POSSIBLE. SHE SAID AS LONG AS SHE IS TOLERATING THE IV SHE WILL LEAVE IT IN TO BE POSSITIVE THAT THEY GET ALL OF THE SPIDERS OUT OF HER.

SHE IS DOWN IN THERAPY AT THE MOMENT. SHE WAS SOOOO CUTE. SHE IS EARING A PAGEANT DRESS THAT NE NE GOT HER AND IT FLAIRS OUT AND SHE LOVES TO DRESS WITH IT ON. ( GET READY KRISTIN SHE IS GOING TO WARE YOU OUT AT CAMP. )

ALICIA IS BACK I WILL UPDATE LATER.

MEE MA AND ALICIA

ANOTHER LINE GONE

2010-05-10T11:36:00.000-05:00

WELL THEY ARE PULLING THE PICC LINE AGAIN. ALICIA DOES NOT KNOW YET SHE IS IN THERAPY, SHE IS GOING TO BE MAD. THE BACTERIA IS STILL GROWING SO DOC DAVIES WANTS THE LINE PULLED AND NOT REPLACED FOR AT LEAST 72 HOURS. SO SHE WILL BE GOING THROUGH GETTING ANOTHE LINE PUT IN AGAIN.

THIS IS ALSO GOING TO PROLONG US GOING HOME EVEN LONGER.W E WILL PROBABLY HAVE TO MOVE IN WITH ERIKA SINCE I AM NOT WORKING AND BILLS ARE DUE. AS LONG AS ALICIA IS OK THAT IS ALL THAT MATTERS.

ALICIA DID PULL ANOTHER LITTLE STUNT YESTERDAY. NEVER A DULL MOMENT WITH HER. ANY WAY SHE CALLED THE POLICE AND TOLD THEM HER MOMMY WASNT ANSWERING THE PHONE SO SHE COULD TELL HER HAPPY MOMMY'S DAY. SO WE HAD THE TALK ABOUT WHEN WAS THE RIGHT TIME TO CALL 911. LEAVE IT TO ALICIA.

WELL SHE IS BACK FROM THERAPY SO I WILL UPDATE LATER.

MICHELLE AND ALICIA

LEAVE IT TO ALICIA

2010-05-08T08:18:00.000-05:00

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

2010-05-07T08:34:00.000-05:00

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

2010-05-04T10:11:00.000-05:00

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

2010-05-03T07:09:00.000-05:00

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

2010-02-21T02:57:00.000-06:00

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

2010-01-27T10:53:00.002-06:00

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

2010-01-18T10:26:00.003-06:00

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

2010-01-12T20:10:00.002-06:00

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

HOME AGAIN

2009-12-29T14:02:00.002-06:00

LEAVING THE HOSPITAL

READY TO BREAK OUT

HOW MANY WIRES DOES AN EKG TAKE

WE FINALLY MADE IT HOME LATE YESTERDAY AFTERNOON. SHE IS STILL TAKING ANTIBIOTICS WHICH I CONVINCED THE NURSES I DID NOT NEED TAINING. LOL I TOLD THEM IF I HAD ANY QUESTIONS I WOULD JUST ASK ALICIA. HER GVH IS STILL GETTING WORSE. WE LEAVE FOR CINCINNATI A WEEK FROM TODAY. THANK YOU EVERYONE FOR SO MANY PRAYERS AND ALL OF THE SUPPORT.

MICHELLE

A Pinky PROMISE

2009-12-24T22:56:00.003-06:00

Anshon jr....................

Mommy and Daddy and Jayshon.....................

My Dad and Alicia...........................

Denise's daughter Cassie and Jayshon.......................

Alicia and Jayshon...............................

I can never break a Pinky Promise. Today was an awesome day. I am grateful for another Christmas with my family. I am very tired they wore me out so I am going to make this short but sweet so I can post pictures of the boys as I promised.

I hope everyone has a Special Christmas as I did today.

MERRY CHRISTMAS

MEE-MA

Merry Christmas

2009-12-24T01:04:00.004-06:00

Alicia's Birthday Present from Mee Ma

On our way to Cincinnati

I am sitting here, and my mind is thinking of many ways to start this update and after 30 minutes i just decided to just type as I think.

I am once again sorry for not updating when we got back from Cincinnati. We are going back again soon. We leave on the 5th for our home away from home. Some times I think it would be better if we just stayed in Cincinnati for a while.

Alicia is still battling GVHD in her mouth. She is on steroids but they seem to be working. It comes and goes but one thing is for sure it is not stopping her eating. Her little mouth has so many sores but she wakes up hungry and when she is eating she is asking whats for her next meal LOL. I remember so many of my friends children had the steroid weight going through transplant but not Alicia. She was always so little and myself and all my friends at the RMH had to bribe her and cook twenty different things before she would eat.

She is also having issues with her Glucose level being very high. Doc Davies says its because of the Steroids. I just don't understand how the two is going to off set each other. She needs the steroids, but her sugar level keeps getting higher. (Another reason I wish we stayed closer to CCMC.)

Today I Turned 40 and as everyone at mine and Denise's party kept saying how old we were I just kept saying in my mind how grateful, I thanked God I was there today. OK like I said I am typing from my mind so forgive me. I found a picture with Alicia with Santa last year at the RMH and one I took last week here at home. The difference brought tears to my eyes and I am so grateful we are at home once again.

Look how Beautiful She is. I am so proud of her!!!!!!!!!!!!!!!!

I want to thank EVERYONE for all of the Birthday wishes on FB. I told Denise how she needed a page but she is still learning how to get on Yahoo LOL.

Tomorrow is Christmas at Erika's so I promise to take pictures of the boys and post then soon. I pinky swear as Alicia would put it.

Merry Christmas

p.s. and Happy New Year if I don't update til then. LOL (sorry)

LEAVING FOR CINCINNATI IN THE MORN

2009-12-08T14:16:00.002-06:00

OK OK I AM SORRY AGAIN. I AM OVER DENISE'S AND ALL I HAVE HEARD IS HOW BAD I AM WITH UPDATING.

WE ARE SET TO LEAVE IN THE MORNING FOR CINCINNATI TO FOLLOW UP WITH DOC DAVIES. ALICIA STILL IS BATTLING GVHD IN HER MOUTH, IT LOOKS BETTER TODAY BUT A COUPLE OF DAYS AGO IT WAS NOT LOOKING TO GOOD. SHE IS STILL ON ALOT OF STEROIDS, BUT THE PLAN IS TO START WEENING, SO MY FINGERS ARE CROSSED. ALICIA IS EATING US OUT OF THE HOUSE. HER CHEEKS LOOKS LIKE CHIPMUNKS.

ALICIA WENT TO THE KIDNEY DOC THIS MORNING AND THE BIGGEST ISSUE WAS THE AMOUNT OF PROTEIN IN HER URINE. WE WILL FOLLOW UP IN JANUARY. DOC DAVIES IS NOT TO WORRIED ABOUT HER KIDNEYS.

I HAVE BEEN FEELING GOOD MY SELF. I HAVE AN APPOINTMENT WITH MY CANCER DOC AT THE END OF THIS MONTH. I WILL LET EVERYONE KNOW HOW IT GOES (PROMISE).

PLEASE REMEMBER A FRIEND OF OURS HER NAME IS CHARISSE, I MET HER AT CAMP THE FIRST YEAR WE WENT. SHE PASSED AWAY LAST WEEK FROM FA. PLEASE KEEP HER SON ISAAC AND HER HUSBAND ALAN IN YOURS PRAYERS. SHE IS ALREADY MISSED DEARLY.

MEE-MA

"Almost 7"

2009-11-16T12:38:00.002-06:00

Once again I start off by apologizing for not keeping everyone up to date on how we are doing. I have logged on my computer a million times in the past month and the anxiety gets so bad I just turn it off. Sometimes I believe we can live in this imaginary fairy tale and as long as I block out reality then it will be easier to cope, but that is not true. Reality with FA is every day in our life and many many of our friends also.

It is so hard to believe that Alicia will be 7 years old in two days. I remember the times when 7 seemed so long away and the times when I never knew if it would even come. She is getting to be such a "BIG" "LITTLE" girl.

The "BIG" part I am not exaggerating either. Alicia is back on steroids now and she is eating non stop. They finally took her off of the tpn at night and put her back on fluids over night due to her sugar level being to high now that she is on the steroids. When we were in Cincinnati a few weeks ago Alicia had a horrible case of GVH and it was in her mouth. Her little mouth was so sore but the steroids cleared it up in a few days but it also bought us another trip back to Cincinnati in a few weeks. We will be going back on the 9th of December to see Doc Davies. Hopefully she will start weening the steroids again then. Alicia also had an immune study done and the results were not what we wanted to hear. Usually a year post transplant your immune system should be working at 100% but with all of the complications Alicia had she is at best at 50% and she is going on two years post transplant so Doc Davies said NO restrictions will be lifted off of her til the earliest will be this summer. I just pray we get to make camp this year!!!!!!!!!!!!!!!!!!

I am feeling alot better. I have been seeing the doctor every week and the Cancer doc once a month, but I do feel alot better. I do have a few bad days though and I am learning how to just work through them myself.

Please everyone keep Dan and Nikki Mccarthy in your prayers. I read an update and I can just feel the pain my friend is feeling. We went through many difficult times together during transplant and they are very dear to me. Also Delia could be facing another transplant, she is a young lady I met at camp with FA so please keep her in your prayers.

HAPPY BIRTHDAY BABY GIRL

MEE-MA

In Hospital again

2009-10-15T23:09:00.002-05:00

Just a quick update to let everyone know Alicia has been in the hospital since Monday. Her BP is staying very high and they have found issues with her kidneys. The blood is not flowing through an artery in her right kidney. We will have a MRI done in Cincinnati next week.

Please keep some very close friends to me in your prayers, they have lost their child to FA and they need comfort and peace. Anthony Negrin and Sam Mcarthey both lost their fight with FA. They went through transplant the same time as Alicia and are very dear to me!!!!

I will update on Alicia when I find out more info.

Mee-Ma

long waited update

2009-10-10T18:27:00.002-05:00

I have had so many calls and text's and letters and now I see e-mails also checking on us, and I am sorry for the time it has taken to update. The truth is I have been avoiding the computer. It seems like every time I turned it on another one of my friends have lost their child and I just didn't want to face that.

Anthony, some one We were very close with, passed away and It has had me very depressed and I am sorry if anyone was left worrying.

Alicia is doing great, as you see from the picture she is sooooo chubby. (she has on her brothers shirt). We will be in Cincinnati on the 26th, 27th and 28th to see Dr Davies and ENT. She is so excited to see everyone.

As for myself I have been in and out of the Hospital Three times since my last update. I built up an infection in the fluid in my abdomen and since have had to have a Picc line put in and give myself my own Anti Biotics. I am still very weak and sometimes scare myself!!!! I have lost 100 pounds since June from being so Ill. I hope to be better soon.

Alicia has spent alot of time with me. The boys have been fighting fevers for two weeks and That is one thing we are hoping to avoid with Alicia. She helps me so much she is getting to be such a big girl.

Well once again thank you for all the prayers and care from everyone.

Michelle

SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-09-16T13:25:00.003-05:00

HELLO EVERYONE AND I AM SO SORRY ABOUT NOT UPDATING SOONER. ALICIA AND I ARE FINALLY DOING A LITTLE BETTER. I AM STILL HAVE TERRIBLE PAINS IN MY SIDE BUT THE DRAIN LINE THAT WAS INSERTED IN MY SIDE TO DRAIN ANY FLUID BUILD UP WAS REMOVED LAST THURSDAY. I AM HOPING I AM NOT BUILDING UP FLUID AGAIN AND WE WOULD HAVE TO START ALL OVER, I HAVE A CT SCAN ON MONDAY TO CONFIRM THAT. I ALSO SEEN THE CANCER DOCTOR HERE I KANSAS AND I LIKE HIM A LOT. HE IS COMMUNICATING WELL WITH DR RICHARDS IN CINCINNATI. I HAVE ANTHER APPT WITH HIM AFTER THE CT. THEN ITS ON TO THE LIVER AND KIDNEY SPECIALIST FROM THERE.

ALICIA HAS A HORRIBLE COUGH RIGHT NOW. SHE SEEN HER DOC HERE YESTERDAY AND THEY TESTED HER FOR THE SWINE FLU AND OTHER THINGS BUT ALL TESTS WERE NEGATIVE!!!!!!!!!!!!!! WE HAVE BEEN SPENDING A LOT MORE TIME TOGETHER NOW THAT I AM FEELING A LITTLE BETTER. SHE IS RIGHT HERE WITH ME NOW, BOY I MISSED HER SO MUCH WHEN ALL OF THIS WAS HAPPENING!!!!!!!!!!!!

WE ALSO MOVED IN THE TIME I HAVE NOT UPDATED. MY LEASE WAS UP IN THE APARTMENT AND I FOUND SOMETHING A LITTLE CHEAPER AND WITH ME NOT WORKING I WILL TAKE ANYTHING CHEAPER.

ONCE AGAIN I AM SO SORRY FOR NOT UPDATING. I REALIZE THERE ARE MANY PEOPLE WHO CARE AND WORRY ABOUT US AND I AM SORRY. I WANT TO SAY A SPECIAL THANKS TO DIANE FOR THE CARD YOU SENT.... IT MADE MY DAY!!!!!!!!!!!!

MICHELLE

P.S.

2009-08-28T19:09:00.002-05:00

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

2009-08-28T17:56:00.002-05:00

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

*update

2009-08-24T13:32:00.002-05:00

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

YESTERDAY WAS A TOUGH NIGHT

2009-08-23T23:26:00.002-05:00

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

Michelle is back in hospital

2009-08-19T18:42:00.002-05:00

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

Doc Update

2009-08-18T11:42:00.002-05:00

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

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

2009-08-14T09:53:00.003-05:00

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

Finally home!!!!!!!!

2009-08-11T12:56:00.003-05:00

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

were not in kansas toto

2009-08-09T08:31:00.002-05:00

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

friday august 8 (I think) 2009

2009-08-08T13:33:00.002-05:00

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

2009-08-01T16:01:00.005-05:00

**** 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!!!

Michelle and Alica

2009-07-31T20:37:00.002-05:00

Well let me start by saying, unfortunately I have very little information.

Alicia is doing well. She is preparing to head home in a week. Erika is coming in on Sunday to be trained to care for Alicia. After the training, if all is still doing well she will head home!!!! YEAH!!! Please pray all stays well.

Michelle is having more issues. Her kidneys are under stress, breathing, heart rate, and liver. We did not get any results today from the fluid. Tomorrow!! It seems her status keeps changing.
I do know tomorrow her father, step-mother, and Brother in law are arriving. They fully plan to take her home to Kansas this week, they are hoping by Tuesday. She will be immediately placed in the hospital. That is the last I heard. Since things keep changing, we will see.

She does have stage 4 cirrhosis of the liver, from an unknown cause, at this time. They are and have been saying that if they get this infection under control, she can live another 20 years with this.

I know you all are very worried and frustrated, but it has been a horrible waiting game. Please be assured that I will get the information as soon as I can. Sometimes her sister has tons of phone calls and I do not get much information until later in the day!

Please just pray for her!

Thanks so much!!! You all are a true blessing!!!
Krisstina

2009-07-28T14:39:00.004-05:00

***UPDATE***
Michelle looks ok, not good but ok. She was very uncomfortable and tired. She was in and out.

She has a severe infection (that is infested in 50 lbs of fluid she put on since last Thursday) and it comes first on the repair list. Second the liver and third the cancer. Tomorrow they are going to attempt to remove some fluid and send to lab. They have to make sure the meds are covering it. She is not out of the woods. She could go south at any time. They said her liver is very bad and could give out at anytime, she will then die. If they can get her through this infection the hope is to treat the liver to help repair it, if not a transplant. At this point they know nothing of the sort. They can not check the liver until the infection is under control.

They did an ECHO and will get results tomorrow.

She was very uncomfortable and upset, her phone was going crazy while we were there. She was not happy. She says it is that way all the time, so she can not rest. Texts and calls at least 4 times in a 45 minute period. I will update you when they call me tomorrow with the latest.

She asked me tonight if this was the end and I told her I did not think so and she started to cry and said I have a really bad feeling. She cried when talking about Alicia and how she could not care for her any longer. I told her when she got better she could help, but it is Erika's time.

Denise will be here at least another week. She is very happy about that!
PLEASE PRAY FOR HER!!!!
She asked me to tell you all thank you sooooo much!!!! She really needs prayers and she appreciates all of you!!
Krisstina
***********************************************************************************

Michelle is still hospitalized and is not doing well. Her liver is declining, her o2 stats are low, her heart is under distress, and she has a very bad infection. Please pray she survives this!!!! They have said she would not survive a trip home right now and she will have to be here until they can get it taken care of.

Thansk
Krisstina

Alicia is doing well.

Hospitalized

2009-07-26T13:36:00.002-05:00

Alicia and Michelle have both been admitted! Alicia was admitted Friday Friday night due to blood in stools. She is doing better.
Michelle was admitted last night due to infection.

I have very little information right now. I know Michelle is having liver and heart issues due to fluid.
Please Pray!!!!
I will update as I can.

Krisstina

Michelle hospitalized

2009-07-16T16:37:00.004-05:00

***UPDATE*** Michelle is feeling better. She is still in the hospital, but resting. She even ate today.

Alicia is good, no change with her. She is still having alot of stools.

Below is a couple of photos. I know not very nice looking. Michelle wanted you all to see her new PICC line and her bruising.

Thanks for checking in

Krisstina

Michelle has been admitted to the hospital. When she went in this morning to receive pain management a fluids she had a fever so they admitted her. She is getting a PICC line. She will also be getting a full body CT scan. They are looking to find what is going on with her.

PLEASE PRAY FOR HER SHE IS UNDER AN ENORMOUS AMOUNT OF PAIN!

Last night when I went by to see her, she had been very ill before we got there. She had been vomiting and she did not look very well. She has been bleeding alot from her incisions, because she is very bruised! It is very bad! They say that the only way to get the bruising gone is for them to bleed the hematoma's out.

We will be going to see her this evening and will update when we return.

Alicia is doing well, Having fun with mommy!!!

Krisstina

Still Alive!

2009-07-16T13:34:00.002-05:00

I just wanted to give everyone a quick update, I now how everyone has been so worried and wondering.

I don't want to mislead anyone, I am still in a horrible amount of pain. I am very very bruised, as the Doc puts it "it looks like I have been ran over by a bus". Today I had to go in for pain management and I got four doses of Morphine along with two bags of fluid. I stay very light headed and it is almost impossible for me to get out of bed. I have an enormous amount of blood coming from my incisions but Dr Richards said that is going to happen until the bruising goes away. He has me on two different types of Pain meds, Antibiotics, inflammatory, and anti anxiety meds. I have not been able to eat either. I am going in tomorrow for more pain management so it can help me heal.

I also found out that I am going to have to have some Chemo as soon as I heal. The Cancer was contained in my uterus but Dr Richards said he needs to make sure he got all of the cells. My family has been on me about coming home for the Chemo but I am still concerned for Alicia and do not know if that is the right thing to do. Alicia has a virus in her stool and they are still vry very runny and tummy pains now and I do not want her to have to be hospitalized at home if I can avoid it.

Erika is here and Alicia is in Heaven. Erika is a huge help as my mom and Denise were as well. I just do not know what is the right thing to do yet. I have to figure out some means of financial help if I stay through the Chemo as I have ran out of all finances. I just have a lot of thinking to do.

I will update more later. Please keep the prayers coming.

2009-07-13T23:50:00.001-05:00

Michelle and Alicia are doing ok. Michelle is very sore.
Erika is here and they both are loving that! She is having fun with Alicia, while Michelle rests. Not much to update until Thursday, when we go back to the Oncologist.

Thank you for all the prayers!
Krisstina

Michelle and Alicia

2009-07-11T16:52:00.003-05:00

I am sorry for not updating yesterday! There was not any real change. She did have one more bag of blood and was much better. She is very sore, but out of the hospital today.

Alicia was going to be released when Michelle was, but she had a fever last night that lasted thirty minutes. So that bought her an overnight stay, she will be released tomorrow. Michelle is with her now. She was sooo excited to see her Meemaw!

Michelle has her followup appointment on Thursday and Will get her results then.
Thank you for checking in!!!
Krisstina

Michelle Update

2009-07-09T20:25:00.002-05:00

Michelle is not going home today, maybe tomorrow. She was still sounding very out of it today. She is still not feeling up to par.
After surgery yesterday they had said she lost a lot of blood buut it was not anything to worry about. I guess last night after we left and into this afternoon, she received 3 tranfusions. All is fairly well now. She even tried to eat. She sat up a long time both last noght and today.

Please pray for her, you all know how she gets when she is not near Alicia.

Thanks for checking in.
Krisstina

2009-07-08T23:07:00.002-05:00

Hello everyone,
This is Krisstina updating for Michelle. I apologize for the late update. Michelle made it through the surgery OK and got up to her room around 6:30PM.
Her surgery was scheduled for 11:30 AM. She did not go back until 12:04PM. They called out at around 2:20PM and said all was going well, but still working. She got to recovery about 3:05PM.
Monday when we met with the doctor, he said he was not giving a time limit to the surgery. He said he was taking as long as he needed. He had a lot of work to do and scar tissue being one BIG obstacle he had to conquer. They were removing several sites for biopsy, along with scar tissue, lymph nodes, ovaries, tubes, uterus, and cervix. They were planning on doing it laproscopically with robots. She has 4 little 2 inch cuts that are glued together. He did not want to open her up again. She still has a very large open wound on her tummy. It is about 4 inches long and 2-3 inches wide at the top closest to skin and about 3 inches deep, but looks awesome. Michelle had been praying that the robotic would work and IT DID! We are so happy! Much less healing and down time.
Boy she was very unhappy tonight! She was feeling pressure and it scared her so she was getting anxiety. We finally got her comfortable. It took about 2 hours to get her comfortable enough to sit still. Not totally but when we left at 9:00PM they were trying to get finished.
We will find out more on results in about 72 hours.
Thank you so much for your prayers and checking in on Michelle and Alicia! Pray that they both get back up to par soon and will be able to return home to Kansas!

I will be updating every evening until Michelle is able to.
Thank you Krisstina

Alicia is doing well. She was already crying for MeeMaw tonight and Michelle spoke to her all drugged up and told her not to cry she got her new tummy and would be home tomorrow! YES, tomorrow is when she should get released.

MY SURPRISE!!!!!!!!!!!!!!!!!!!

2009-07-07T07:48:00.002-05:00

Yesterday was probably one of the best days ever. I felt pretty good and I got the surprise of my life!!!!!!! Denise arrived around ten pm and she told me to come out and help with her bags and said she had a surprise for me and when I walked out there stood MY MOM!!!!!!!!!!!!!!!!!!!!! I was so surprised and so HAPPY!!!!!!!!!!!!!!!!!!!!!!!! She came to see me through my surgery while Denise stays with Alicia. I cried like a baby.

I went to see the Surgeon also yesterday and he said that he is going to try his hardest to do the surgery with the Robot but if he did have to open me back up that he would not use the same incisions as the last surgery. He was very pleased with the way it was healing and did not want to touch it. ( THANKS KIM!!!!!!!!!!!!!!) I am on a clear liquid diet all day so I get to watch my sister and mom eat Crabs at Joes Crab Shack.

Alicia has an appointment today for more labs. She seems to be feeling fine and is just so elated that Ne Ne is here. She seems to be fine now with being admitted since Denise is going with her.

Tina is going to updated at the same time every day through my surgery ( Thanks Girl!!!!!!!!)

Thank you for all of the support.

Still holding my breathe................

2009-07-01T11:33:00.002-05:00

So far so good. Alicia seems to e doing fine so please keep the prayers coming!!!!!!!!!!! I was up every 30 minutes last night taking Alicia's Temp and so far so good. She kept feeling hot to me all night but the highest she got was 99.6. I thought my thermometer was not working right so I had Kim bring me one around 6am (Kim is always awake at that time of the morning to go to the hospital with her baby) but hers read the same. Alicia is very active and she ate a whole bowl of mac and cheese for lunch so I am still holding my breathe that her own little body is fighting off what ever is going on in there.

Alicia is on the count down for Ne Ne and Mommy to get here. She barely opens her eyes before she asks me how many days til they get here. I can not wait myself. Denise is such a HUGE help and I miss Erika sooooo much!!!!!!!!!!!!!!!!!!

I had another rough night, besides taking Alicia's temp so often, I was also hurting a lot. Today is better though. Kim is doing such an Awesome job packing and taking care of my wound, Her and Amy both say how well it is looking. Now if it would only stop hurting. Amy has been a HUGE help also, she takes Alicia off my hands all the time to give me little breaks... They are both such a HUGE support.

Tuesday Tina and I go for one last appointment before the surgery. I am so thankful for Tina being there, she has been my ears and she so understands all of this and can explain it to me in English.

Please keep praying for Alicia not to get sick. We have an appointment at 8:30 in the morning so hopefully her counts have went back to normal. I will update after her appointment tomorrow.

Here we go again..........

2009-06-30T14:30:00.002-05:00

Alicia had her clinic appointment today, the good news is she is starting to gain weight, her stools are loose again so I hope she doesn't start to lose is again. The part I am worried about though was her CBC. The Nurse, Paula, just called and said Alicia's white cell count is elevated to 22.3 and her Anc is elevated again to 19,000. This is always a trend for Alicia before she gets sick. They also said her Liver numbers are elevated again which also has me very concerned. They also did a CRP test which shows the inflammation in her body and it was elevated as well. I don't have good feelings about this, Please pray that this does not mean Alicia is getting sick again.

Last night was a horrible night for me, I was in so much pain that I barely slept. ( I haven't slept well in weeks) If Alicia gets sick this means more nights on those very uncomfortable beds at the Hospital. The last stay on those beds is when I ripped open my wounds. I am not concerned about myself as we all know. This is about Alicia and I just pray she is not getting sick. She acts fine right now but that is also the trend before the storm.

I am so counting the days before Denise gets here so I can concentrate on getting myself through this surgery which I am scared to death of.

Please keep Alicia in your prayers today!!!!!!!!!!!!!!!!!!!!!

One week to go

2009-06-29T14:03:00.002-05:00

I have not been feeling well at all the last couple of days. I am glad that the surgery is right around the corner so I can finally get it behind us, but I am also very very scared. My wound has been hurting a lot lately but Kim and Amy, my close friends here at the RMH both say it is looking very good. I have been sleeping a lot lately.

Denise will be here a week from today so that will help me out a lot. Erika will be here on the 12th and I can not wait. I miss Erika a whole lot. My Mom has been taking care of things back at my apartment and I am so greatful to her!!!!!!!!!!!!!!!!

My FAmily has given so many words of encouragement and I do not know what I would do without them. Thank you so much!!!!!!!!!!!!!!!! I can't forget my friends outside of my FAmily because they have been a huge support also!!!!!!!!!!!!

Alicia is doing fine. She has a check up with Dr Davies tomorrow. She seems to be gaining weight since she has been on TPN, and her stools seem to be improving a small amount. Alicia is not liking the idea of having to go to the hospital when I do. She doesn't understand why she has to go if she is not sick. She keeps saying she don't want to go and she is scared, but once I tell her Ne Ne will be with her she says ok. I just hope it isn't for long.

Once again thank you for so much support and prayers. I will update more when I am feeling a little better.

Date set for Surgery

2009-06-26T13:13:00.003-05:00

Well once again I am sorry for the lack of updates, I spend most of my time on my back in bed if Alicia is not demanding my attention. I went and met with Dr Richards yesterday and the st date for the Surgery is on July 8th at 9am. I am still in a lot of pain since I ripped open but one of my very close friends Kim is changing the dressing twice a day and she is doing an awesome job. Every doc that has looked at my wound has commented on how well she id doing and how well the wound looks. It is not draining and has no infection which I owe all to Kim. Thank you so much girl!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She is a Nurse by practice so that helps a lot also.

When I left the appointment yesterday once again I was worrying because there were days in between the surgery and when Erika would be here. Another one of my close friends, Amy, said she would stay with Alicia along with Tricia another friend of ours but once again Denise has came to my rescue!!!!!!!!!!!!!!!! I guess she had already had it planned to be here for the Surgery and to stay with Alicia til Erika got here. My Sister is the BEST!!!!!!!!!!!!!!!!!!!!!!!!!! Thanks Denise, I promise to be a better patient this time!!!!!!!!!!!!!!!!!!!!!

My mom is still holding it all together back home so I can not forget to thank her. Mom you are awesome a have taken so much off my mind. I can't wait to be "Roomies" I also want to that Tina for everything once again and Dianne for being so much support and all of my FAmily for so many messages and words of encouragement!!!!!!!!!!!!!!!!!!!!!!!!!!!

Alicia is doing great. She is loosing a lot of weight so they put her back on TPN which is an IV nutrition. She has all of her energy back and is being "Alicia"

Thank you so much for the prayers and support!!!!!!!!!!!!!!!

Out of the Hospital

2009-06-21T11:13:00.002-05:00

Well we are back at the RMH. They let Alicia out straight from ICU to our room at the RMH. The word was they were short of rooms on the BMT floor. Alicia seems to be doing well again. She is still having problems with her runny stools but all of her cultures are coming back negative so we still have no reason as to what happened earlier this week. She has an appointment tomorrow with Dr Davies so we might learn more then.

I am still in a lot of pain but it is getting a little better. My friend Kim is changing and packing my wound twice a day. It is very uncomfortable to get done but I feel so much better with her doing it. I have an appointment with the cancer doc on Thursday so I should know when the surgery will be after that. I am soooooo scared. They said that I will probably have to use a wound vac in order for the wound to heal after surgery.

I want to thank everyone for all of the prayers and a special thanks to Dianne and her family for the gift you sent me!!!!!!!!!!!!

I will update soon

GIVE ME A BREAK!!!!!!!!!!!!!!!!!!!!!!

2009-06-18T20:09:00.002-05:00

I FINALLY GOT THE INTERNET TO WORK HERE IN ICU. THANKS TINA FOR COMING TO MY RESCUE ONCE AGAIN.

I CAN NOT BELIEVE ALL OF THE BAD LUCK WE ARE HAVING LATELY!!!!!!!!!!!!!! I AM ALMOST SCARED TO WAKE UP JUST FOR THE FEAR OF NOT KNOWING WHAT WILL HAPPEN NEXT!!!!!!!!!!!

ALICIA IS DOING A LOT BETTER. WE ARE STILL BATTLING HER BLOOD PRESSURE BUT HOPEFULLY WE WILL BE MOVED TO THE BMT FLOOR TOMORROW.

WELL THE DAY STARTED FOO CRAZY FOR US AGAIN. I WENT TO THE RMH TO TAKE A SHOWER AND JUST AS I WAS ABOUT TO GET IN I BENT OVER AND ALL I FELT WAS MY WHOLE STOMACH RIP COMPLETELY OPEN. YES I AM FOR REAL!!!!!!!!!!!!!!!!!!! BLOOD WENT EVERY WHERE AND OFF THE EMERGENCY ROOM I WENT. MY WHOLE ENTIRE INCISION WAS RIPPED OPEN. THEY HAD TO CALL THE SURGEON WHO DID MY SURGERY TO COME LOOK AT IT AND SHE SAID THEY COULD NOT CLOSE IT DUE TO THE RISK OF INFECTION. THEY HAD TO PACK IT WITH GAUZE AND I HAVE TO GO TO THE CLINIC IN THE MORNING FOR THEM TO RE-PACK IT. SO NEEDLESS TO SAY I AM COMPLETELY OPEN AND IN A LOT OF PAIN AGAIN.

TOMORROW IS ALICIA'S ONE YEAR MARK SO I AM PRAYING IT WILL BE A BETTER DAY. WHO WOULD OF THOUGHT THAT ONE YEAR LATER WE WOULD BE SITTING IN ICU. I AM THANKFUL THOUGH THAT WE ARE TOGETHER AND ALL WE CAN DO IS TAKE IT ONE DAY AT A TIME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

PLEASE KEEP US IN YOUR PRAYERS, IT HAS TO GET BETTER!!!!!!!!!!!!!!!!!

ALICIA MEE MA LOVES YOU AND I AM SO PROUD OF YOU!!!!!!!!!!!!! HAPPY SPECIAL DAY BABY!!!!!!!!!!!!!!!!!!!!!!!!!

Alicia ICU

2009-06-17T21:29:00.002-05:00

Hello It is Krisstina again for Michelle,
Michelle asked for me to update, since she does not have the Internet right now. Alicia is in ICU. She started vomiting and diarrhea last night and had blood in stools. The docs told Michelle to watch her. So this morning her temp went up and she took her to the ER. While there, her blood pressure started dropping and they took her into a trauma bay. Her blood pressure bottomed out at 59/30. Her temp got to 102. She has blood in stools and her tummy was all sucked in, Michelle said you could see every bone. She was taken to ICU. Her BP was low for awhile and then this evening was too high. She will be there for a couple days before going back to the BMT unit. She will have to be off the Dopamine first.
They are doing tests for all symptoms. One of us will update when we know more.

Please pray for her and Michelle.
Thanks
Krisstina

Michelle update

2009-06-15T20:10:00.003-05:00

Hello everyone!
This is Krisstina updating for Michelle, per her request.
Today we went to her follow-up to have the remaining staples removed and there was one of the staples that should have stayed in a little longer, but it was healed enough to just place a butterfly stitch on it. She has about six or seven of them and should get them off, if they do not fall off first, and have a wound check by Monday.
They gave us a copy of the pathology report and it shows she has Stage 1 endometrial adenocarcinoma. They found it in 3 places. All were showing stage 1, which is very promising!!!!!!
We will have a consult with her Gyno-oncologist. It should be within the next week. Since it is on the lining of the uterus, she will be getting a full hysterectomy. The good news is that most of the time with stage 1 they get it all with the hysterectomy. They will be taking biopsies of many places to make sure the cancer had not spread to her stomach and other organs. We will know more next week.
Michelle is doing well. She is felling a little better knowing a little more information, not a lot but a little.
Please pray for her all goes well for both of them and some peace for Michelle!

Alicia is also doing well!

Thanks for the prayers.

2009-06-13T18:14:00.002-05:00

I am sorry I have been able to update myself, the past week has been very hard on me and all a big blur. I want to stress how very Thankful I am to Tina for keeping everyone updated. I am truly blessed to have a friend like her. She has went over and beyond for me in more than many ways. I Love you Tina and thank you for EVERYTHING.

I also want to thank Denise for dropping everything to be here for us. I love and owe you so much Denise. You are the very very best friend in my life and I do not know what I would do with out you.

I also want to thank my mom for all of her support!!!!!!!!!!!! I would have nothing if it weren't for you mom. Thank you sooooo much. You have taken so much off of my mind and I love you very much!!!!!

Like I said this whole week has been a big blur and a lot of confusion. Today I am not in as much pain as I have been so I feel it is getting better. I don't know where to start so I will start at the beginning.

I woke up from my nap last Friday in an enormous amount of pain. I usually can tolerate pain so I tried to wait it out but it only got worse so I had Alicia go get a friend of mine her at the RMH and it was down hill from there. Another friend got me to the Emergency room and I could barely even sit up. When I finally got back they started an IV and gave me Morphine, which I must say was AWESOME!!!!!!!!!!!!!!!!!!!!!!! They then did a CT scan and it showed a very large cyst on my right ovary so they wanted to do an ultra sound also. The cyst took over two screens on the ultra sound to see it all, it was HUGE!!!!!!!!!!!!!!!!!!!! They admitted me and the next morning an OBGYN and Surgeon came in and told me it needed to be removed. By then I was on a pain pump so every six minutes i could push a button and was getting a dose of dilota (sp??) so I was in no pain at all and could not really remember much of what was going on. I did know that my sister was on the way and that Alicia had been admitted to childrens by the order of Dr Davies. I don't remember much from that point, I do remember my friends from the RMH being there (Kim and Amy and Shawn) which they have told me that I was saying some crazy things. Mostly about caring for Alicia. They said kept repeating how she likes her tator tots and I was worried that she wouldn't get them.

I also do not remember much after surgery, Denise said she had talked to me in the recovery room which I do not remember at all and I know my friends were there the whole time and in the room waiting when I got back. They took turns checking on Alicia which I thank them so much for. They helped me sooooo much!!!!!!!!!!!!!!!!!! I was told that the cyst was 27 inches long by 12 inches wide and they had to drain 4 liters of fluid off of it to even be able to remove it. I had 22 staples up and down my tummy. I was still in a lot of pain and on the pump til the following day. Denise arrived around ten that night and her and Tina, Keith, Jacy and Cameron stopped at the hospital where I was and I do remember that. I was so at ease then because I knew Alicia would not be alone any more. The next day they took me off the Pain pump and started me on oral pain meds, they got me out of bed and Denise helped me shower. At that point I knew I had to get to Alicia so I insisted on them releasing me the next day. Denise stayed and was a HUGE help the whole week!!!!!!!!!!!!!! Alicia kept telling everyone my owie was not in my butt any more it was on my tummy.

Now the hard part........................... when they removed the cyst they said I also had a something else hanging from my cervix which they removed along with a biopsy they took from my cervix and it was sent to the pathology lab. Friday when I went to get the staples removed which they only removed half because some were oozing and I am very very bruised, any way the lab reports showed that what they removed and the biopsy both showed cancer. They said it was vital that I have a complete hysterectomy done asap. I was at a loss of words and told them I was not going to do anything or make any decisions until I talked to Dr Davies. My first and utmost concern is Alicia. I can not even bare of the thought of her going through anything without me. I know and have been told a million times in the past few days that if I do not take care of my self that I will not be here for her anyway but that does not matter to me. I know that I will be in the hospital for at least a week and Dr Davies told me Friday that she wants Alica to be admitted to Childrens and under her care while I go through this. Alicia has not ever been alone even for one night her hole entire life. I know they will take care of her but I can not even stand the thought of it. Erika will be here I know it so I decided to wait until she can get here to be with Alicia. She will also be here for a week after. My family all want me to come home but it is not an option.

I will have more answers after my appointment on Monday. I have written down a list of questins and I will let everyone know more than. I ask for many prayers please. This all is so very hard. I thought we were just coming here for a few weeks and we would go home. I was to start my job back this week. I came with nothing and I needed badly to return to work. My family has been a huge support and I thank my mom and Denise so much.

PLEASE PRAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Michelle results

2009-06-12T12:54:00.003-05:00

*****UPDATE******
I just hung up with Michelle and she said her head is just spinning. She said she thought she'd be better tomorrow. She has been unable to update because she has been in pain and not getting around well. She said she may try tomorrow. The cancer is on the cervix. They have no idea what stage or where it has spread or even if it has. They did say they thought she has had it for awhile. She is so unsure of what she is going to do and how to go about care with Alicia, so please pray god leads her in the right path. She has a follow up appointment on Monday.

Her sister, Denise is leaving tomorrow because she has had some medical issues of her own and needs to get back home for treatment.

As for Alicia, she is doing well and tehy did a scope today to check for gvh in the GI tract and DID NOT FIND ANY!!!! YEAH!!

Thank you all so much for the encouraging words and prayers!

Krisstina

This is a very difficult update for me to make. Michelle had her followup this morning and was informed she has cancer. I have no idea where, what stage, or how much. Alicia is having a scope this afternoon for GI so I will update with all the information I have tonight! I hate to leave this hanging but Michelle asked me to ask for prayers! She really is distraught and I have only spoken with her by text. Please respect her privacy during this time and leave her messages on here or email. She is in a place right now where she is not ready to speak with anyone.

Thank You so MUCH!!!!
Krisstina

Michelle and Alica

2009-06-11T20:24:00.004-05:00

We saw Michelle today She looks good.

We had to take a test back to the hospital for Jacy. So We picked up Denise (Michelle's twin) and took her to Walgreens to get Michelle's medication. She is doing well. She is still in a lot of pain, but moving around. Her staples are ready to come out tomorrow. She had an appointment Wed. and they did cultures to make sure the site is clear. She should know the results from pathology tomorrow.

Alicia has a GI biopsy tomorrow as well. I will update when I hear from their appointments.

Below is a link to a news story from when the Bengals visited the RMH the other day.

http://www.bengals.com/news/article-1/presence-felt/9e366f62-58f9-40ee-9b9d-835bc35ccc23
The photo above is from today! Keith got rained out around three and text me he was on the way home. I told him I was at RMH with Michelle. Alica kept asking me to bring her a cell phone and pizza lunchables. I said this weekend and she said no now. So to get her off my back I called Keith and let her talk to him. Next thing I know Keith was coming to RMH. She kept telling him she wanted a cell and lunchable, now so he thought she was saying come here now. When she is on the phone you can not understand her very well. She sure has him trained. Here he came to play. He took her down to the playground while Michelle and I visited.

Thanks for stopping in to check on us!
Krisstina

Michelle released

2009-06-08T18:24:00.002-05:00

Michelle is out of the hospital and back with Alicia!!! She is very happy about that! She said she is in a lot of pain and trying to rest.

Thank you all so much for your prayers.
Krisstina for Michelle

Michelle update

2009-06-07T14:33:00.003-05:00

Hello,
Just wanted to give you all an update. Michelle is doing much better today. She switched pain medicine after we left last night and it knocked her out. Her sister Denise sat with Alicia and will continue to do so until Michelle is better. Alicia is however required to be inpatient to make sure she gets the care she needs until Michelle is back at the RMH.
I talked with Michelle a little bit ago and we discussed her weight gain during transplant being from the tumor. Her oxygen level is around 93 and they keep weening he off saying they just want it to stay above 92. She is on a weaker pain medicine today. She is feeling better today, Her catheter was removed, she showered (with the help of her sister), and she changed clothes. She says she is still having alot of trouble moving.
She asks for prayers so that she can hurry back to Alicia, she is really missing her and wanting to get back to her. Her sister, Denise just updated me and said Alicia is a little confused but doing well!! She just wants her Meemaw. She also asks for prayers for Michelle, she needs them both in the same place to give more efficient care. She has some health issues of her own and will need extra prayers to stay strong.
Thank you so much for checking in.
Krisstina

Oh yes! I forgot Michelle wanted me to tell that she is doing well, she delivered a baby that weighed 9 lbs. and was 27" long. The baby does not have FA! She never seizes to amaze me with her upbeat attitude!

Michelle Surgery

2009-06-06T11:47:00.006-05:00

*****UPDATE*****
Just dropped Denise off to Alicia.
We picked her up at the airport, went to see Michelle, and then took her to rmh to drop off her things, and finally she reached Alicia!
Michelle is doing ok. She is in a lot of pain, itchy and a little low on oxygen. So she had them change the pain meds while we were there and they gave her benedryl. She is being her normal Meemaw self and dying to get back to Alicia. They say if she walks and uses the restroom she can get out Monday. They removed a cyst that was on her ovary. It was fluid filled about 4 liters to be exact. They also removed a fibroid from her cervix. No cancer!!! They did say it had been growing for years! She has not been to the doctor for 23 years!!! Since she had Erika! For those of you that know me, you know what I said to her. She laughed and said I bet you are updating the site and telling them you have been all over me, I told her not yet! lol! I will update tomorrow or as I hear anything new.
Thank you so much for your prayers and support!
Krisstina for Michelle

Just spoke with Michelle and she is doing ok, very sore and tired. She said her phone was going off the wall, She asked me to update the site. Please remember that she needs to rest and as soon as we know something new she or I will update as soon as possible. She really just needs to rest today.
Thank you so much for your concern and prayers she really appreciated all of it. I am sure in a couple days with prayer and rest she will be up to talking more.
Thanks again.
Krisstina

Michelle is out of surgery and doing well. I will update more as I hear. I will be picking her sister up at the airport about 9 pm and we will be going up there at that time. Last night Michelle was telling her family to just wait but her sister called and she decided to come. I got the flight booked and she will be taking care of Alicia while Michelle is down. The incision they made is said to be very big, so she will be down for a little while. Keep praying this family is going through so much right now!
Thanks for checking in.
Krisstina

URGENT NEED FOR PRAYERS!!!!
As we speak Michelle is in surgery. Please pray all goes well.
yesterday late afternoon Michelle was in an enormous amount of pain and eventually went to the hospital ER. They did some tests and found a 27" cyst on her ovary, they are removing it now. I will update when I know more.
Krisstina

SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-06-04T17:49:00.002-05:00

OK OK OK MOM AND KELLI............................. SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My Mom and my sister have been on my butt to update and I have been slacking again SORRY!!!!!!!!!!!!!!!!!!!!!!!

Alicia is still doing fine except her poop is still very very bad!!!!!!!!!!!!!! Doc Davies said we will be here until she can get her tummy fixed. They are doing more tests so hopefully we will know something soon. The last x-ray showed her colon is healing good though so that is good news. I still do not see us going home anytime soon though. We did get some AWESOME news today... Our insurance is going to pay 100% of Alicia's hearing aid. It should be here Wednesday. I am so excited for her!!!!!!!!!!!!!!!!!!!!!!!

Today she has her Biopsy so now is the hard part and the waiting game.

Now on to Normal news for Alicia...... As everyone knows nothing shocks e when it comes to her so I was not shocked when Alicia cut her hair the other day. YES she cut her hair. She got the scissors from my purse and cut herself some bangs. Leave it to her. She also embarrassed me the other day so so so bad. I had woke up and my monthly visitor had came ( LOL sorry men) anyway Alicia had came in and she thought I was hurt and she was so worried. Well we were in the elevator on our way down to go to the Hospital to get her labs drawn and there was an older lady in the elevator with us and Alicia went to telling her that we were going to the hospital to get a band aid cause mee-ma' butt was bleeding. I was soooooo embarrassed!!!!!!!!!!!!!!!!!!!

LEAVE IT TO ALICIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-05-30T15:57:00.002-05:00

Alicia had her hearing test done on Thursday and her hearing has gotten worse. She has 75% loss. Alicia did so well during the tests!!!!!!!!!!!! Then a lady came in to talk to me about a Baha hearing aid. Alicia took another test with one on and her hearing went to 15% loss. I was sitting behind her where she could not see me so I whispered her name. i mean i really whispered and I about fell over when Alicia turned around and looked at me and said what....... SHE HAS TO HAVE ONE!!!!!!!!!!!!!!!!!!!!!!!!!!! They are working now with the insurance to see if Alicia can get one. it was awesome!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Alicia also had an EKG/ECHO done on her heart and a scan done on her bones to check the density of them for any damage done by the chemo. Thursday they will do the Biopsy and also clean her ears to see if they can get a little of her hearing back. I am hoping to be home by her Year "Special day". Her Electra lites are still out of whack and Dr Davies still has to talk to her Pediatrician for a follow up plan back home so keep your fingers crossed!!!!

I will update more when the results start coming in.

Good News!!!!!!!!!!!!!!!!!!

2009-05-26T21:18:00.002-05:00

We had an appointment today with Dr Davies which we had another x-ray prior to and she said it looks a lot better!!!!!!!!!!!!!!!! Alicia still has loose stools but they have slowed way down. She should only be on the antibiotics for a couple of more days for the bacteria and it should be all uphill from here.

Dr Davies said she still wants us to stay in Cincinnati for a while to watch her after the antibiotics are done and we are still planning her year work up for the end of next week. The big issue is the follow up care from home. Dr Davies said that we have to come up with a different plan before we can go home. Alicia's Pediatrician is an option and Dr Davies is calling her this week.

I will update more when I have any news. Thank you for the prayers once again, God defiantly heard them all.

RMH

2009-05-24T08:23:00.002-05:00

Alicia is doing a lot better. They started her NG feeds yesterday which she tolerated very well. The plan now is to let us go to the RMH, but to stay around Cincinnati for a while, which I am OK with. The closer to Dr Davies, the better.

The Nurses and Doc's have all been so great. I am so very glad we got Alicia here, who knows what would of been the outcome if we were still in Kansas. The Doc' in Kansas were great also but by any means the care for a child that has had a Transplant is the BEST in where the Doc's know about FA!!!!!!!!!!!!

Dr Davies already has an appointment set up with Alicia for Tuesday which she is going to have another x-ray done on her stomach to see if is better. Alicia still has her year post transplant workup which was scheduled before all of this came up. Dr Davies also wants Audiology to see her while we are here also.

I am not sure if the room we are in at the Rmh has Internet access, if not my friend across the hall does so I will update more soon. Thanks for all of your support.

P.S.
Stacy was laid to rest yesterday at 2pm. I talked to his mom and she said it was very beautiful.

FOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2009-05-22T08:48:00.002-05:00

YEAH FOOD!!!!!!!!!!!!!!!!!!!!!!!!! THE SIX CENTS WORKED!!!!!!!!!!!!!!!!!!!!! Of course when the spaghetti got here it was not want she wanted. She wanted squares (Ravioli's) instead but SHE GOT TO EAT!!!!!!!!!!!!!!!!!!!!!!! She seems to be feeling a lot better, they plan is to keep her on the antibiotics until the 27th and see how she is doing then. The stools are still very runny but they have slowed down which is good. She hopefully will be taken off of the Tpn's tomorrow as long as she keeps eating.

She is having big time Theo withdraws. Every time we walk in the hospital here in Cincinnati she asks for Theo. Well this time he has been in Boston with a child life specialist. I heard he came back yesterday and is planning to surprise Alicia. Since Monday they have been writing letters back and forth. Meagan with Child life put a mail box on Alicia's door and every morning there has been a letter from Theo and then Alicia writes one back to Theo. This mornings letter asked if she wanted to play today?????

I plan on talking to Michelle a little later today so in my next update I will let everyone know how she is doing. Please remember all of the children going through Transplant and each and everyone of our FA children as well.

A Sorrow but Sweet day........................

2009-05-20T07:53:00.009-05:00

Yesterday was a very hard day for the FAmily. The loss of such a young and precious boy that was very very close to me. Stacy passed away and went to be with Jesus at 7:30pm last night. He breathed on his own for 30 minutes and The Angels took him from Michelle's arms . I talked to Michelle late last night and she was still with him til around one this morning just rocking him. She said the funeral home was coming for him last night so they are already gone. Please keep them in your prayers. The funeral home is called Barbourville Affordable Funeral Home...

Barbourville Funeral Home

410 Ky 3439

Barbourville Ky 40906

Michelle and Marks address if anyone wants to send a card is..................

Mark and Michelle Honeycutt

PO box 353

Girdler Ky 40943

There also is a web site that Krisstina started a virtual candle light ing in his honor. If you would like to light a candle please go to www.gratefulness.org and search under group named fanco. I would also like to remind everyone if possible please make a donation to the Fanconi Anemia Research Fund... with out the means of donations then a cure for this awful disease is not possible. Every cent donated is one step closer to funding research to find a cure to save these beautiful children's lifes!!!!!!!!!!!!! Please send donations to....

Fanconi Anemia Research Fund

1801 Willamette st Ste 200

Eugene Or 97401

You can send the donation in honor of Alicia's Reed if you would like.

Alicia is doing a little better. Yesterday they allowed her clear liquids only which made her a little happier, but today I believe she is paying for it. Her tummy is hurting and the stools have started up again. She had a total of three Popsicles, one jello, and a half of a cup of chicken broth. Today she will get only half of that if even that. Last night Alicia gave me 6 cents and asked me if I would please give it to the Doctors in the morning so she could have some Spaghetti. It was soooo funny. She was sooo serious also....They did another x-ray yesterday and the good news it did show a slight improvement from two days prior so hopefully we are moving in the right direction.

Today my grandson Jayshon turned 1 year old. I am so sad that I am not there to be with him!!!!!!! This time last year He was born and I had the same feeling I was letting him down as I do today. I h ave missed so much of both of my Grandsons lifes. I made a promise that after I see their sister through this that I will make it all up to him.

HAPPY BIRTHDAY JAYSHON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mee Ma misses you soooooooooooooooooo much!!!!!!!!!!!!!!!!!!!!!!!!!

R.I.P Stacy

2009-05-19T11:34:00.002-05:00

I am at a loss of words. Today FA is taking the life of someone I am very close to. Stacy Hunningcutt will be placed in Jesus's arms at 7pm tonight. His Mom and Dad made the decision this morning that he has suffered enough. Please say an extra prayer for them this evening at 7pm.

Stacy baby Mee-ma is going to miss you so much. I am going to miss those big hugs you gave me and I am going to miss watching you run over everyone at the RMH on your tractor. I am so blessed that I got to know you and you are so special. Fly High baby!!!!!!!! Where you are going there is no more FA, no more pain, no more needles, no more medicine, only happy days from now on. I love you Stacy R.I.P

Mee-ma

Day ???????????? DO NOT KNOW

2009-05-19T07:25:00.002-05:00

Alicia is resting so I have the opportunity to update. Any and every second she is awake we are arguing about food. I am so scared she might start eating my arm or something. She is begging everyone that walks in the room to Please give her one bite. It hurts so bad to tell her she can't. I even thought of sneaking her a spoon full of broth but the first time i do i would get caught!!!!!!!! The Nurses here are WONDERFUL and Megan who has been with us the last couple of days is really stressing to the Doc's how Alicia is having a very hard time with this. The bad thing is Alicia didn't eat three days prior to this happening (by her choice) so we are actually going on a week without food. I am trying everything to side track her and keep her mind occupied and busy but it is not working. Even Sponge Bob is not helping me!!!!!!!!!!!!!!!!!!!!!!!!

The did start her IV (TPN and Lipids) nutrition yesterday which makes me feel better knowing she is getting the protein and calories and nutrition she needs.

They also started another Anti Biotic yesterday for the Bacteria in her stool, and this one is oral. I flush it with sterile water so I am trying to use a little extra to calm her stomach for the few minutes it will. The Doc's have not rounded yet so hopefully we will have some good news when they do.

I do not know if I mentioned in my last post that I went and seen Stacy Yesterday. I could not help but just crying when I seen him. He looks sooooo tired. The Docs told her that he was loosing blood flow to his left leg and if it got any worse they would have to amputate and Michelle said that there was no way she would let them start taking off his limbs ( i am bawling lie a baby) I spent every moment I could with his mom yesterday while her husband was gone and I got the feeling she is just about ready to put Stacy in Jesus's arms. She told me that she held his hand yesterday and told him that if he was tired to just show her a sign and she said a tear rolled down his cheek. She said she told him it was Ok and that Mommy and Daddy will be Ok and that he didn't have to keep pushing and hurting and that Jesus would take him to Grandma. I am just so sad for my friend. We cried together and she was begging for the strength to let go. His twin sister is here today but the Hospital will not let her up to see him with all of the tubes hooked up. (which is probably best) I have not talked to her today but as soon as I do I will update again today so you can check later this afternoon for another update. I told Michelle that A very special friend of mine who also has children with Fa posted about Stacy on the group and that many many many people she does not know is praying non stop for her whole Family. Michelle does not have a computer and is not even on the group, She said she didn't even know it was there but she wanted me to Thank everyone so much she said.

UPDATE ON ALICIA AND STACY

2009-05-18T09:31:00.002-05:00

I JUST POSTED AN UPDATE ON ALICIA BUT I WANTED TO LET EVERYONE KNOW HOW MY LITTLE BUDDY, STACY IS.

I SEEN MICHELLE ( HIS MOM) YESTERDAY A FEW TIMES AND SHE STILL HAD HOPE BUT WHAT SHE WAS TELLING ME GAVE ME NO HOPE AT ALL. SHE MELTED IN MY ARMS AND CRIED FOR WHAT WAS MINUTES BUT SEEMED SO LONGER. SHE SAID YESTERDAY THAT HE WAS MOVING HIS ARMS AND EYES AND SHE FELT HE WAS GOING TO GET BETTER.

THAT ALL CHANGED THIS MORNING. I JUST HUNG UP THE PHONE WITH HER AND SHE SAID DR DAVIES CAME IN THIS MORNING AND TOLD HER THERE WAS NOTHING MORE THEY COULD DO FOR HIM. SHE SAID DR DAVIES WAS CRYING WHICH TOLD ME IT WAS NOT GOOD. SHE SAID EVERYTHING IS SHUTTING DOWN AND IT WAS ONLY THE MACHINES KEEPING HIM ALIVE BESIDES HIS STRONG LITTLE HEART WHICH WAS STILL BEATING. DR DAVIES SAID THE MOVEMENT IS ONLY HIS NERVES. SHE TOLD MICHELLE THAT THEY COULD ONLY LEAVE HIM HOOKED TO THE MACHINES ONE MORE WEEK BEFORE GANGRENE WOULD TAKE OVER HIS BODY. I SAM AT A LOSS OF WORDS. I HURT SO BAD FOR MY FRIEND AND I WILL MISS MY LITTLE BUDDY SO MUCH. FA IS SOOOOOOO UGLY.

PLEASE LORD LOOK OVER MY FRIENDS AND TAKE CARE OF STACY WHEN HE GETS THERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WHAT A RIDE!!!!!!!!!!!!!!!!!!!!!!!!!

2009-05-18T07:20:00.003-05:00

O MY WHAT A RIDE WE HAVE BEEN ON FOR THIS PAST WEEK!!!!!!!!!!!!!!!!!!!!! FIRST I WANT TO THANK TINA SO VERY VERY MUCH FOR KEEPING EVERYONE UPDATED. TINA YOU ARE SUCH A GREAT FRIEND!!!!!!!!!!!!!!!!!!!! I ALSO WANT TO THANK EVERYONE FOR THE MANY MANY MESSAGES AND PRAYERS. WHEN I FINALLY GOT HERE TO CINCINNATI AND HAD ACCESS TO THE INTERNET UNLIKE WHERE WE WERE, I WAS SO AMAZED BY ALL OF THE SUPPORT AND MESSAGES. THAN YOU EVERYONE SO MUCH. BY MOST THE ULTIMATE THANKS GOES TO GOD FOR LEADING ME TO MAKE THE RIGHT DECISIONS ALL WEEK AND GETTING MY BEST FRIENDS CARE BACK IN DR DAVIES HANDS.

I DO NOT EVEN KNOW WHERE TO BEGIN. ON MOTHERS DAY I GUESS IS WHEN MY EYES WERE WIDE OPEN. ALICIA POOPED 19 TIMES AND THIS IS NO EXAGGERATION. I WOKE UP THE NEXT MORNING AND CALLED CINCINNATI AND THEY ORDERED LABS RIGHT AWAY TO CHECK ALL OF HER ELECTROLYTES. TWO HOURS LATER I GOT A CALL FROM CINCY AND WAS TOLD ALICIA HAD A POTASSIUM COUNT OF 1.8 AND NEEDED TO TAKE HER TO THE HOSPITAL. WE WERE ADMITTED TO ICU AND FOR THE NEXT SIX DAYS SHE RECEIVED BOLUS AFTER BOLUS OF POTASSIUM AND PHOSHORUS AND MAGNESIUM. HER STOOLS WERE STILL VERY BAD SO IT WAS LIKE A CYCLE. GIVE ELECTROLYTES, ALICIA POOP, CHECK LABS, GIVE MORE ELECTROLYTES AND BACK TO THE BEGINNING.

FINALLY ON SATURDAY THEY DECIDED TO REPLACE ALICIA'S NG TUBE SINCE SHE WAS LOOSING WEIGHT AND THEY WANTED TO START SOME TUBE FEEDING. EARLIER IN THE WEEK THEY WERE PUSHING HARD TO PLACE A G TUBE BUT I INSISTED THEY CHECK WITH DR DAVIES, WHICH SHE TOLD THEM NO. AFTER THEY PLACED THE NG THEY DID AN X RAY TO CHECK THE PLACEMENT AND THAT IS WHEN THE WORST PART OF THE NIGHTMARE BEGAN. THE X RAY SHOWED A LOT OF FREE AIR IN HER ABDOMEN SO SHE WAS IMMEDIATELY TAKEN FOR A CAT SCAN WHICH SHOWED A LOT OF AIR IN THE LININGS OF HER COLON WHICH THEY SAID WAS LEAKING OUT INTO HER ABDOMEN. WITHIN 30 MINUTES THEY WERE COMING IN WITH CONSENT FORMS TO OPERATE AND EXPLORE AND POSSIBLY REMOVE PART OF HER COLON. I OF COURSED FREAKED AND SAID O NO YOU MOST DEFIANTLY HAVE TO RUN THIS ONE BY DR DAVIES. I THEN ASKED ABOUT THE PROCEDURE AND SHE SAID ALICIA WOULD BE CUT OPEN "THE OLD FASHION WAY" AND POSSIBLY COME OUT WITH A COLOSTOMY BAG. I LET THEM KNOW I WAS NOT SIGNING ANYTHING UNTIL I WAS SURE THAT DR DAVIES WAS OK WITH THIS. I CALLED ERIKA AND DENISE AND THEY WERE THERE WITHIN MINUTES. ERIKA TOLD THEM THEY WERE CRAZY AND NOT CUTTING ON ALICIA. I HAD TO TELL ERIKA TO SHUT UP TWICE. SHE WAS NOT HAVING IT. WELL DR DAVIES AGREED WITH ERIKA AND TOLD ME THEY WERE SENDING FOR US THE NEXT MORNING. SO I ONLY HAD A FEW HOURS TO PACK WHICH I HAD TO LEAVE SOME OF MY BAGS BEHIND CAUSE I COULD ONLY BRING ONE. NEEDLESS TO SAY IT WAS ALL OF ALICIA'S CLOTHES SO I AM HERE WITH NOTHING FOR MYSELF. THE MED AIR GROUP AND NURSES FROM CINCY ARRIVED AROUND TEN YESTERDAY MORNING AND OFF WE WENT....................................

THIS IS OF ALICIA IN THE AIRPLANE WHICH GOT US FROM KANSAS TO CINCINNATI IN ONE HOUR AND 29 MINUTES.

ANOTHER OF HER ON THE PLANE...........................................................

THIS IS THE PLANE THEY CAME FOR US ON......................................................

BRINGING HER OFF THE PLANE....................................................THIS IS THE AMBULANCE THAT WAS WAITING AT THE AIRPORT.................BEING PUT IN THE AMBULANCE AND ON OUR WAY TO CHILDREN'S HOSPITAL...

I FOR GOT TO MENTION AS ALICIA WAS BEING WHEELED OUT ON THE STRETCHER THE NURSE RAN UP AND HANDED THE CREW A PIECE OF PAPER THE HAD A NAME OF A BACTERIA THAT CAME BACK POSITIVE IN HER STOOL CULTURE WHICH IS LIFE THREATENING IF GETS IN HER BLOOD STREAM.

THE PLAN NOW IS TO START HER ON THREE ANTI BIOTICS WHICH THEY DID LAST NIGHT, THEY ALSO TOOK AN X RAY WHICH CONFIRMED NEMATOSIS (SP??) SO WHAT I WAS TOLD IS WITH TIME OF LETTING HER GUT HEAL WHICH MEANS NO FOOD OR MEDS BY MOUTH AND DAILY X RAYS ALONG WITH THE ANTI BIOTICS SHE SHOULD BE ABLE TO HEAL ON HER OWN. ( NO SURGERY HMMMMM?????)

THE FOOD PART IS THE HARDEST. ALICIA IS LITERALLY STARVING. SHE NOW IS BEGGING FOR JUST ONE BITE. SHE KEEPS ASKING FOR DR DAVIES PHONE NUMBER AND SAYS SHE NEEDS TO HURRY AND FIX HER TUMMY TODAY CAUSE SHE JUST WANTS ONE CHICKEN NUGGET. IT IS SO HORRIBLE TO SIT HER AND WATCH TEARS RUN DOWN HER FACE AS SHE TELLS ME SHE IS HUNGRY. THEY SAID SHE MIGHT NOT GET ANYTHING OT EAT FOR TWO TO THREE WEEKS. PLEASE PRAY THE HUNGER PAINS GO AWAY.

THANK YOU FOR SOOOOO MUCH SUPPORT AND PRAYERS!!!!!!!!!!!!!!!!

Colon infection

2009-05-17T16:44:00.002-05:00

Alicia made it here safely. She is doing ok. She has a bacterial infection and obstruction in her colon. The doctor here says Wichita was trying to do the protocol for a normal patient, Which would be immediate surgery, a colostomy. This would not be the normal treatment for a FA patient. She has a life threatening infection. She is in danger and this must be taken care of carefully.

However, she is still acting very wild, just like her normal self. She is mad, because she is hungry and can not eat. (She has threatened the staff she is going to call Dr. Davies! It was very funny!) They have been told for about 3 weeks.

They are still running tests and Michelle or I will update again as soon as we can.
Thanks and keep praying
Krisstina

Going to Cincinnati

2009-05-16T18:02:00.003-05:00

Ok, so Alicia is coming back to Cincinnati tomorrow evening. She had an X-ray to check the feeding tube placement and they saw a bunch of air in her stomach. So they did a CT scan and found an obstruction to her bowel. They started her on antibiotics and a bunch of other things. She is doing ok and Dr Davies is watching as carefully as she can from here. They are constantly calling the hospital. She will safely be back in their care soon enough!

There in Wichita they were going to take her to surgery, they told Michelle she would probably come out with a colostomy, she said I am not signing anything until we speak with Dr. Davies. They called her and Dr Davies said no way, she is a no cutting zone. I will let Michelle tell you all more later.

Thanks for checking in.
Krisstina

Good news

2009-05-15T19:07:00.003-05:00

*****UPDATE******
Not so good news today!

Alicia is back in ICU, she had her Potassium, Magnesium, and Calcium drop last night. She has been getting them since 3 AM and Michelle is exhausted!
She has had a feeding tube placed back in her nose and she also has had blood in stools, she is in a lot of pain. So we will see what happens next.

Stacy is also not doing well today! They could not switch him to the vent. He still has pneumonia and Mrsa. He is back on blood pressure meds.
Please continue prayers for both!
Krisstina

Not a whole lot happening here, well some, but more waiting than anything.

Michelle just found out that Stacy's brain is no longer bleeding. They are going to take him off life support and place him back on the vent. They are hoping he has no brain damage! They say he will also need a kidney. Please pray for him!

Alica is also doing better. Her numbers are starting to stabilize a bit and her restroom usage is slowing down. Pray her numbers stay up and they can go home next week.

Thank you so much for the prayers and keep them coming!!! They are working!!

Thanks
Krisstina

Stacy, Alicia hospital updates

2009-05-14T11:24:00.003-05:00

****UPDATE**** Not a whole lot going on. Basically waiting to see what happens with both Stacy and Alicia. Alicia is still fluxuating, dropping pretty low and getting potassium.
The doctors there are saying she may be there until the middle of next week. Dr. Davies (Cincy)says if one thing goes wrong, dangerously low again, or anything out of sorts she will be transported here to Cincinnati.

Thanks again
Krisstina

To get the entire history if what is happening please ready older posts.

For Stacy, So far not much change. His mother says he looks better and has moved his arm and mouth. So just keep praying! Pray that she is getting comfort from god, no matter what the outcome.
Krisstina

Alicia's numbers had gone up some while she was sleeping. She then woke up and went to the restroom a couple times. They are now speaking about placing a G-tube. Michelle is very nervous about this, especially as all this is going on with Stacy. She is still in Kansas and would whether be here in Cincinnati. Please continue to pray for them!

Krisstina

Another FA child

2009-05-13T16:30:00.007-05:00

We would like to ask for prayers for a FA family here in Cincinnati. His name is Stacy, He is five. He was in transplant when Alicia was here, about a month after hers. They were next door neighbors at the Ronald McDonald House for several months. He has been given only hours to live and his parents are having a very hard time, to say the least. He went home about a week after Alicia to Kentucky. While at home, He got a port on Thursday, the site came open and got an infection in his blood (MRSA). He then got pneumonia and was placed on a vent. He was brought back to Cincinnati. It has quickly taken over his body and his body started shutting down. They were told today he has a brain bleed, which they can not find and do not know how long it has been bleeding. His parents Michelle and Mark are holding out all hope and just not ready to let go. They are going to try dialysis the last I heard. Please pray for them!!!
Michelle is having a very hard time with all this.

Update on Alicia - Her potassium and phosphorus dropped again! She is now getting more. All cultures are negative so far. So Michelle is still thinking maybe GVH!

Pray for her to keep the numbers up.
Krisstina

Hospital

2009-05-13T10:44:00.002-05:00

Alica is out of ICU for now. Her potassium level is barely above critical. Please pray it stays up!!!
She got magnesium this morning also. She is still using the restroom alot and that may cause her to drop again. Prayers! Prayers! Prayers!
Krisstina

Hopefully there will be more to update soon!

Alicia Hospitalized

2009-05-11T19:05:00.007-05:00

******UPDATE******
Alicia is still doing the same. Her potassium will go up a little and then back down. She is still having diarrhea and she vomited tonight. Her magnesium and phosphorus are also very low. Please pray for all these Iv doses of potassium to take hold, as her levels are considered very critical!
Thanks again!
Krisstina

I spoke with Michelle a couple of times today and Alicia is in ICU. She has critically low potassium and they as of a few minutes ago she had been given 8 bolus's and 3 oral doses. It still will not come up. Her magnesium is low and she is getting that also. She is also trying to get another fever. They have said she will be in ICU for a little while. Please pray for her levels to come back up.
I will update as soon as I get more information.
Krisstina updating for Michelle!

This is Krisstina updating for Michelle, as Alicia was admitted to a hospital in Wichita this afternoon. She was admitted for critically low potassium, a very high white blood cell count, and is on the verge of a fever (100.3). She has been started on fluids. I am sure that Michelle will update as soon as she can.
Please say prayers for her!
Thank you for checking in on her.
Krisstina

Day +326

2009-05-11T10:09:00.002-05:00

Yesterday was just horrible. Alicia went #2 19 times and this is not exaggerating. Her stools are just like water and it has me very worried. I have called Cincinnati this morning an I am patiently waiting for a call back. Hopefully Dr Davies will know whats going on. I will let everyone know as soon as I find out. I wouldn't even care if we had to go to Cincinnati a little early, I just want to know that she is OK.

Day +325

2009-05-10T14:43:00.002-05:00

Ok Ok Sorry!!!!!!!!!!!!!! I have gotten a few e mails that were not to nice so I need to appologize for the lack ofupdates.

Alicia is still without a tube. I am not sure how long though. Dr Davies said she need to maintain her weight or she will be getting another tube, she is not eating well so It ill probably be sooner than later. She looks like she is getting so little to me. She also has dark circles around her eyes which has me worried also.

One good thing is she is taking her meds pretty good without the tube. I have to hold her nose and count to three and she takes them real fast. She is very terrified of the tube so that has a lot of leverage.

We should be going back to Cincinnati in a couple of weeks for a follow up, and actually i am very glad and can not wait for Dr Davies to have a look at Alicia to ease my mind. She has not been seen here except her hospital stay which the Hematologist here never even came to check on her. She is only seen by a Home Nurse and that has me worried.

Thanks for checking on us.

Day +317

2009-05-02T18:25:00.002-05:00

O my where to begin??? First let me start by saying I am sorry that I do not update like I used to. It seems like I can never find time now that we are home. I keep telling myself that I need to at least twice a week but time slips past me.

Well we just experienced our first fever at home. I must say that the hospital here was not as bad as I thought it would be. Of course I could not get the internet to wor so that is why I did not let everyone know. It started Wenesday night, just as soon as I gave Alicia her meds and she laid down in the bed she started throwing up. She had not been eating for three days prior to that so I was already on guard. She still has very very loose stools but they have been like that for a while now. It seemed like she was never going to stop. She even threw up her Ng tube also. That really upset her because she totally hates getting them put in. She kept trying to put it back in herself but I assured her it was ok and I finally got her settled edown and back in bed. The next morning on thursday Alicia did not have much energy and didn't want to get out of bed. I was already worried about the 13 meds she takes in the morning and with no tube that meant she would have to do them all by mouth. She actually did very well. She chased each med with juice and it only took her around 30 minutes to do them all. I was so relieved about that but I was still worried about the eating issue and no tube to give her feeds. After about an hour and she still didn't get up I went and checked her temp and sure enough it was 103.1. I contacted Cincinnati and Erika came and got us and took us to the Hospital. We didn't have to wait and the directly admitted her which was good. They started her on Antibiotics and drew blood for cultures which are still not back. She has not had a fever for two days so we got to come home. My fingers are crossed that something doesn't grow and we will hae to go back.

She still is not eating and I keep telling her she is going to have to get a tube if she doesn't. She has pinky promised that she will eat so we came home without a tube.

Thank you so much for all of your prayers and cross your fingers that this was just a tummy virus.

Day +309

2009-04-24T09:54:00.002-05:00

Everything went well during our trip to Cincinnati. We made it home safe and sound. It took a lot of explaining to Alicia that we were only going for a short while. She did not want to get on the plane. She made sure that she told everyone, including Dr Davies that she was not staying and that she had to go home cause Ne Ne said.

Dr Davies said she looked good. I was hoping that she was going to take her off of some of the hundreds of meds she is on but the only change was with the Tacrolumis (sp??). Her goal is to get her off of the fluids that she is getting over night but she needs the Magnesium and Potassium that are added in the fluids. She just cut the med in a third, she wants to take her off of it slowley so she will not get GVHD again. This med that she cut also effects the Magnesium level so the goal is to get her off of it so it will not effect her Magnesium level which will mean she will not need the dose in her fluids. We are going to give it a trial this weekend. I am not going to give her fluids Saturday, Sunday or Monday and the nurse is coming out Tuesday to draw blood to see if it worked. I so hope it does because that also means we will be able to get rid of the Picc line.

We have to go back to Cincinnati in four weeks and at that time Alicia will have her Year Biopsy and checkup. I can not believe it has been almost a year since she had her transplant. I am so glad it is behind us!!!!!!

Day +298

2009-04-13T17:50:00.003-05:00

I hope everyone has a Great Easter. It rained all day where we live, but we still had a great day anyway. I am actually kind of glad it did rain that way I didn't have to upset Alicia when she couldn't outside. We spent the day at Erika's and cooked a Ham and watched Slumdog Millionaire. Alicia looked soooo cute in her Easter dress. I had to put her hair bow on her strap to her mask since she don't have enough hair to hold one in yet......... I got it to stay in long enough to take the picture but as soon as she moved it fell right out. Ne Ne came up with the idea to clip it to her strap on her mask. I promised Dianne pictures... I hope this was fast enough :)

The boys got hair cuts (actually shaved) while we were there yesterday also. It was Jayshons first one. All of his little curls are all gone:( After Daddy was done with the boys hair Alicia wanted hers cut off again. Of course we didn't let her but it was cute. She said she wanted hers cut off like it was LOL.........

They both are still soooo cute!!!!!!!!!!!!!!!!!!!

We leave for Cincinnati a week from today. I have so much fear that we won't come back in three days like planned. I am sure we will it is just the first time back since we got home and we were there sooo long. Alicia still have very loose stools, and she is still coughing but it sounds more like a dry cough now. But still no fevers which is good.

I am excited though to see all my friends at the RMH. I plan on going to see everyone as soon as I get there. I miss them so much.

Take care and thank you for all of the support.

Day +295

2009-04-10T19:01:00.005-05:00

Ok Ok I know it has been a whole week since I updated. I am truly sorry. My mom called this morning to let me know how bad I have been neglecting Alicia's site. I never realized how time flies by so fast and how busy I would be when we got home.

Alicia's new Nurse, Lynn, came on Thursday and did her dressing change. It was a better job than the last two but it still left a lot of room for improvement. Wow how I miss the care in Cincinnati. Alicia was also getting sick at the end of last week. Her stools were very very loose and she was going all of the time. Dr Rosen had a lot of tests ran but I do not have any of the results yet and she seems to be feeling better.

I took her outside for a bit today to feed the birds and she was so happy. This summer is going to be very hard trying to keep her in.

We leave for Cincinnati a week from Monday. Everything is set and Wings of Hope is taking us again. They are such AWESOME people and I owe them a lot.

I promise to try to update more often. I truly am sorry.

Day +288

2009-04-03T18:58:00.002-05:00

So sorry again that is has been a while since my update. I haven't even checked my e-mail in almost five days!!!!!!!!!!! Being home just consumes so much of my time. I know how many of you care and worry about Alicia and once again I am so sorry.

Everything is still going well at home. We had a couple of close calls with Temps, one last night was 99.9 but it went down so I did not worry. She has finally slowed down on asking to leave so much and realizes we are still isolated from the real world but at least we are close to home and family which makes it so much easier. Ne Ne and Mommy and Daddy make daily visits so that makes Alicia Happy.

We are Leaving on Monday the 20th for Cincinnati, I have told Alicia and she said "No Way" i laughed so hard when she said that. She said "No Mcdonald House Mee Ma" so I promised her we would only go to visit and not stay and she said OK. I told her she would see Theo and she was all for that.

Now to some not so good news............ I woke up Yesterday morning and our bed was soaking wet. y first thought was Alicia did not wake me up and had Pottied more than once and I was laying in urine up to my shoulders. YUCK!!!!!!! I woke her up (not so nicely) and told her to get up cause she had pee pee'd all over us and when she sat up she was holding her Picc line in her hand. i freaked of course and clamped her line immediately. I checked to see what had happened and you could tell her line broke and all that was left in her arm was the very thin tubing. Off to the ER we went. The reason the line broke was due to the Nurse I have been complaining about had not changed the dressing right. She did not use any securement device or any tape or strips to hold in down. The extension line was way to heavy and the weight broke it in the middle of the night. I was relieved to know I was not laying in urine but upset that I had voiced my concerns about this nurse before, needless to say she will not be coming out to our house any more and the new nurse assigned is much more educated with picc lines.

The new line being put in was a lot differently done here than it is in Cincinnati. They were going to put Alicia to sleep to do the procedure but I said No because she had already had two others with no sedation so why would she need it now. Alicia did very well, if only they would of blocked her view it would of been alot better. The sight of the needle was the reason why she freaked so I immediately blocked her view and it was fine after that.

Alicia is calling me so I will update more later. Thank you so much for your support and I will get b etter about the updates.

Day +281

2009-03-27T16:44:00.003-05:00

I am soooo sorry I have not updated in a while. Alicia is still doing very well. We have had a few scares with her vomiting but she is doing fine other wise. We are trying to get back in the routine of being at home. It feels very weird and I miss all of my friends so much back in Cincinnati.

Erika and Anshon and Denise have been here everyday. Alicia keeps telling me that we can not go to the McDonald house, I think in the back of her mind she still thinks we are going back. We have an appointment there on the 21st. I know I am going to have to tell her over and over again that we are coming home. I can only imagine what is going through her little mind.

She seen Dr Rosen again yesterday and I told him my concerns with how the Nurse and his self clean her line. He assured me that it was safe but I am not convinced. The nurse came out Tuesday and changed her picc line dressing and it was a nightmare. It was the most unsterile procedure I have ever seen. I voiced my thoughts very loudly and I am not sure if I am going to let her do it ever again. I can do it myself. I definitely do not want Alicia to get another line infection.

Alicia's counts are all great. Her Platelets are still in the 400 thousands and her Wbc has finally came down to 10.8. Her Hbg is dropping slightly every week so they are keeping a close eye on that. Her electrolytes are finally under control which makes me feel a lot better.

We are going to Cincinnati the week of the 21st of April and until then we will be seeing Dr Rosen every week until told otherwise. I will keep everyone updated on her progress. Thank you so much for all of the support.

Here are pictures of Alicia and her Brothers... The first is with her and Lil Anshon and the 2nd is of her and Jayshon..................

Day +275

2009-03-21T13:01:00.003-05:00

So far so good. Alicia is still doing great. I was a little freaked out though when i took her to see Dr Rosen, here in Wichita yesterday. He barely scrubbed her line. She has another appointment next week on Thursday, I plan on talking more to him and the home nurse about the way her line has been cared for. (Heck), we definitely don't need a third line infection.

Here is a picture of Alicia and her cousin Kortnie, who which has been spending alot of time at our apartment. She will be watching Alicia when the time come for me to go back to work in a couple of months.

This picture is of Alicia and the home nurse Becky. I have a feeling Alicia is going to eat her alive.

Alicia is taking a nap now so i better do the same. I will update more later!!

Home Sweet Home

2009-03-19T18:34:00.004-05:00

This is Alicia at the Wings of Hope Headquarters... She got a grand tour..............................

We made it HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! This is the best feeling ever!!!!!!!!!!!!! As soon as I got off the plane was drop to my knees and kiss the ground. I am totally serious I know it sounds unsanitary but who cares. Alicia was so excited. our whole family lined the Run way, My Mom told me she could see Alicia's little face waving as we pulled up. Alicia ran right to Ne Ne's Arms. It was an Awesome Home coming.

The leaving was a little hard though. I didn't realize how much of an impact everything and everyone had on me in Cincinnati. I am going to miss my friends very much. That 10 months of our life will forever be in my mind. I am starting to cry just writing about it. Our friends Tina, Jo, Jacy and Cameron came took us to the Airport to see us off. Tina about fell out of her chair when she seen how small the plane was that we were taking LOL it was so funny.

Erika, Anshons and the boys came over after Erika got off work. Boy my Grandsons are ROTTEN!!!!!!!!!!!!!!!!!!!!!!!! I have a lot of work to do before I think I can be able to handle all Three of them. I think the boys were just tired. Alicia was already laying down by the time Mommy and Daddy got here, her tummy had been upset but today is a lot better.

The Home Nurse was here within an hour after we got to the apartment, it took her all of ten minutes to teach me how to work the pump and an hour on all of the paper work. I do not know how well I am going to adjust to this lady. Alicia is pretty hard to handle and she kept looking at her crazy every time Alicia told her not to touch her. She has an appointment tomorrow at 2:30 with Dr Rosen the Hematologist here.

Dr Davies came to see Alicia Tuesday before we left our last appointment. I am so thankful for all that she did for us. She is an awesome person. Theo also came in to say good bye. it was so cute... Alicia told him she was going to miss him and she would call him and she gave him a huge hug.

Day +270

2009-03-16T15:30:00.003-05:00

Sorry I have not updated in a few days. Everything is still good. Alicia is doing great and all plans are still in action. I held my breath all weekend and we made it!!!!!!!!!!!!!!!!!!!!! So this morning I got up and packed everything. I didn't dare move anything through the weekend. I was scared it would jinx us. Alicia was napping when I was packing and every time she woke up she would smile so big and ask if we were going home now. Finally I said YES!!!!!!!!!!!!!!!!!!!!!!!

We have one more appointment tomorrow so Dr Davies can give her the good look over and Michelle, our nurse coordinator can go over everything about the discharge and it HOME from there. Our flight leaves at 11 am with Wings of Hope again. They are such gracious and wonderful people.

Hopefully the next update will be from Kansas!!!!!!!!!!!!!!!!!!!!!! I plan on pacing my computer in the morning. Thank you for all of each and everyone of yours support!!!!!!!!!

WE DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I AM SOOOO PROUD OF YOU ALICIA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Day +266

2009-03-12T21:29:00.002-05:00

Well we made it out of the hospital today. I watched Alicia like a hawk all morning until we left (and all night also) Alicia was dancing and singing all the way down the elevators and she has been such a happy girl all day long. I have to admit I was very nervous when I hooked Alicia to her Antibiotic and fluids this evening. It has been a while but the main thing that worried me was she might get another line infection. It is all done and I feel better now, it was the first time jitters after we have been through so much.

Alicia has an appointment with Dr Davies tomorrow at 2pm and another Tuesday at 8:30 then we are Homeward bound!!!!!!!!!!!!!!!!!!!!!!! I feel we are going to make that flight this time. I am sooooo excited. I am sad because I will miss Anshon's Birthday Sunday but I will make it up to him when I get home.

Denise has not been feeling well lately so please keep her in your prayers. Between her and my Mom they have been a HUGE support to me. Erika is very excited we will be home also. That is all Alicia talks about is going to see mommy, daddy, ne ne and aunt Kelli. My self, I can not wait to see my Grandsons I know they have grown since I seen them at Christmas.

We will have to return to Cincinnati in 5 to 6 weeks after we get home but it is only for a short stay. Hopefully only good updates from this point on. Thank you so much for all of the support and prayers once again.

Day +265

2009-03-11T11:14:00.002-05:00

Alicia is back to her normal little onery self. The lab finally reported on the type of orgaisms growning from her self infliction of sprite and they are all common water bugs as Dr Davies put it. We are being released tonorrow with an anti biotic that I will have to give her every 12 hours through her IV and back to fluids over night as well. Dr daives want s to see her back in the clinc on Friday and then again on Tuesday then we are set to leave on Wednesday the 18th. I feel like this last episode was a message from the Lord and now I feel better about leaving. My eyes are wide open and I know I have to watch her like a hawk.

I thought today would be a bad day since I was supposed to leave today but it actually is a good day. We are about to go down and have another Picc line out in so wish us luck. Alicia is going to do this without any medication at all. I will update more tomorrow. Once again thank you so much for all of your prayers.

Day +263

2009-03-09T12:18:00.003-05:00

Alicia did well with having her port removed this morning. She is a little upset though because they put the IV in her foot and she does not like anyone messing with her feet. The next two days are going to be long ones. She is scheduled to have a picc put in on Wednesday at 2. So I guess that this would mean that we will not be on that flight at 11 am. Here is a pic of Alicia just after she was waking up this morning in the PACU.........................

I am just soooooooo frustrated about this whole situation. The waiting and not knowing is the worse!!!!!!!!!!!!! Now I do not have a clue as to when we are going home. Hopefully Dr Davies will come and speak to me today. And to make the matters even worse, yesterday when I was leaving to go across the street to eat dinner I stopped to double check that the nurse server was lock and I could not believe it.... it was unlocked again. I was livid. I went to the nurse and told her to come and lock it and I let the charge nurse know how upset I was. I told her when will it be enough after a child kills their self........................................... I was smart though, just before I went to gt the nurse I took a picture so I could e-mail it to Dr Davies..............

Luckily I checked or who knows what Alicia would of gotten into this time!!!!!!!!!!!!!!!!!1

Before I end this I want to take a little time and Thank my mom for all she has done for me. I stressed yesterday how Denise has went over and beyond for us but my mom has also. She is the one who took the time to find us the apartment, she has done so much with it also. She has been there every day doing more and more. Thank you so much mom I love you!!!!!!!!!!

Day+262

2009-03-08T14:04:00.002-05:00

Alicia has had two positive cultures in a row now. Dr Davies said it is best to pull her port which they are going to do tomorrow. After 24 to 48 hours she will have another picc line put in and a couple days after that we should be able to go home. Who knows when that will be though. I am just so frustrated.

Denise and her Husband have been at my apartment this morning finishing up. I owe Denise so much. She has went over and beyond for me. My Mom has been so great also. I do not know what I will do with out them.

I will update more as i know it.

Day +261

2009-03-07T11:51:00.002-06:00

Alicia seems to be doing well. She is still being closely Monitored. In rounds this morning the Doc told me the lab had told her this morning that it will not be til tomorrow until they can let her know what Bacterias are growing because there is a multiple of them. GREAT!!!!!!!!!!!! They are still not ruling us going home. In a way I think they want to make sure we get home as soon as possible because they know how mad I am and this could be a BIG issue for this dept and Hospital. Little do they know that this is not going to be forgotten and swept under the rug. The neglect of care that day could of taken my baby's life. She was just doing what is done to her many times during the day. Alicia and I have had many talks about what happened and we will have many more until I believe she truly understands that is not OK to play with her own line.

As soon as I know the outcome of the organisms growing I will update everyone. Please pray we get home soon!!!!!!!!!!!!!!!!!

Day +260

2009-03-06T18:56:00.003-06:00

This morning started off with the nurse telling me that Alicia's cultures have came back and they are positive for gram neg rods. They are not sure exactly which bacteria is in her blood stream but that should be determined soon. She will continue on all three anti biotics until the bacteria has been identified.

Doctor Davies came to see us and assured me that the situation with the unlocked nurse server is being addressed. She also told our social worker not to change our flight and that she did not want to make any decisions til Monday. She said if the bacteria can be cleared without have to pull her mediport than we would still be going home and I could give Alicia the antibiotic at home. She said if it was a type of bacteria that required having to pull her line to clear the system than she would make sure it was done early nest week and this would mean we could go home the following week. First and most important is that all cultures must come back negative which they are taking daily.

I am so glad that this all happened before we left. First of all it has opened my eyes. I have thought about this all night and I am convinced if we were already discharged the outcome would of not been good. Alicia reacted so fast and it was very serious. I realize now that I can never be to aware. Who knows if she has done this before. This could very well explain the last line infection. When we return home all medical supplies will be locked up and Bubba and Theo had to say good bye. Alicia has seen and learned to much while she has been here so long. She just did to herself what she has seen the nurses do many many times. She even scrubbed her line first. I am sure the scrub was not sterile as well as the sprite and syringes but I can laugh about it now. She had played doctor and put water in Bubba's and Theo's lines so many times but I never even gave it a thought that she would do it to herself. This could of taken my baby's life!!!!!!!!!!!!!

I will update more as soon as I hear. Thank you for so much support and Please keep Alicia in your prayers.

P.S After I posted this I did some thinking and I thought a lot of what Charisse left wrote in her post and Alicia and I had a talk and we decided it would be cool if Theo could still come visit, but now he can come and every night and watch a movie and have popcorn and they could color together. This made Alicia very Happy. The bond between this puppet and Alicia is very strong and Theo has been there foe Alicia through most of her difficult times through this journey and I decided it was not fair to break that bond.

Day+259 A very bad day

2009-03-05T21:21:00.002-06:00

Where do I start.............. first Alicia has been doing very well the last couple of days. She has had problems with her Magnesium and Potassium levels but they were finally under control and we were to be discharged this morning, just in time to be at the RMH to meet UPS to ship out our stuff and wait out the final 6 days until we were homeward bound. Lets just say things did not turn out that way and I am sssssooooooooooooooooo MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have reached my limit and I am very very frustrated.

Everything was good this morning, Alicia and I woke up early and we were in the mist of being discharged. All that was left was to pull her IV's and give her morning meds and we were out of here. I had to run down tot he pharmacy to pick up a few new meds they had put her on which took all of twenty minutes. When I walked back in to her room I about fainted!!!!!!!!!!!!!!!!!! Alicia was sitting in the bed with 9 FULL syringes full of her own blood. I immediately looked at her line and she had hooked herself to a line from who knows where. Here line did not have any blood in it so i FREAKED!!!!!!!!!!!! I asked her what did she use to flush it and she said water. Mind you I work for a water treatment company so I know everything in tap water which is full of bacteria. I grabbed the blood and started counting how much it was and it was 42 cc's she had taken. the nurse was in the room so I started asking how this happened...................... there were also needles and cbc vials in her bed so I knew she had to of gotten into the nurse server which should of been LOCKED!!!!!!!!!!!!!!!! A few minutes later Alicia started grabbing her neck and crying and saying she wanted to lay down and that her chest burned. Her heart rate went into the 200's and she spiked a fever that kept rising. All of the Docs rushed in her room and started ordering all kinds of test and was worried that she had pushed air in her line as well. I lost it. I was so livid!!!!!!!!!!!!!!!!!!!!!!!!!! This is when I looked beside her bed and it hit me that the cup Alicia said was water was the cup I had poured SPRITE in earlier for her to drink. Alicia had flushed her line with SPRITE!!!!!!!!!!

Of course it was hush hush because they realised that the nurse server was not locked, and at one point had tried to convince me the nurse said it was. I told them so explain where the needles and vials came from because I do not carry them in my purse. They could only shake their head.

Alicia is stable now. No results have came back on what all she had put inside of her. Dr Davies said she wants to watch her for a couple of days and she has not canceled our flight. I believe this is a sign from God telling me that I need to keep a much closer eye on her. I made Theo go home to his mommy, no more syringes and play medicine and I called my mom and told her to put a lock on my closet before I got back so I could lock up her meds.

I am very exhausted so I will update later. Tomorrow is going to be a hectic day I am sure because all kinds of Higher up people were trying to talk to me but I told them I was not ready to talk to anyone. I was to MAD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ICU Update

2009-03-01T11:28:00.002-06:00

I am here at the RMH and wanted to give everyone a quick update. Alicia is doing much better. She is still in the ICU. The CT and Cultures have showed nothing yet which is good news. She has not had a temp since yesterday morning. They had to put in a Catheter (sp??) because they were not sure she was urinating due to the large amount of stool she has had. The surgeons do not thing=k it is an obstruction which is very good. Everything is leaning towards a stomach virus but she is still on three antibiotics. They had to place three more IV's which did not make her happy at all.

Yesterday was very hard on me. My family was moving everything into our new apartment. I am not sure how long if any this will set us back, but I thank the Lord she was here when this happened. Lil Anshon's Birthday is two weeks from today and I really hope to be home for that.

I am heading back to Alicia, thank you for all of the messages and I will update next time I am back at the RMH.

In ICU again

2009-02-28T08:58:00.002-06:00

I want to update everyone and let you know Alicia is in ICU. Please forgive me if I do not make since I have no slept a wink all night. It started around 4pm yesterday when she woke up from her nap. She started vomiting non stop for 4 hours and runny stool with blood in it. I got her to the Emergency room and she was rushed to the trauma bay. She has a very High temp and her blood pressure went critically low again. She is on oxygen and is having very bad tummy pains. They took an x-ray and it shows no air in her bowels which could be an obstruction or infection. They have consulted with the surgeons but are waiting to do a CT and the cultures to come back. Her face and body is very swollen due to the amount of fluids they have given her in the past 8 hours. I will update more when I know something. Please Pray for my baby!!!!!!!!!!!!!

Day +250

2009-02-24T18:19:00.002-06:00

O my I can not believe it has been 250 days since Alicia has had her transplant. Today I was just sitting here thinking about how slow the days are passing but to look at that number just proved me wrong. So much has happened in our lives these past 250 days. Alicia has came so far.

I got a call today from our social worker and the date is set for us to go HOME!!!!!!!!!!!!!!!!!! We are leaving now on the 11th and that is confirmed. I don't know all of the details or the time but the date is set in stone. All of our stuff is being shipped back home on the 5th. Children's Miracle Network back home is helping us with the expenses and I am so grateful to them. The day we actually get off the plane and we are home will be a wonderful day!!!!!!!!!!!!

My Mom and Denise are moving all of our stuff into the new apartment this weekend. I do not know what I would do without the two of them. I owe Denise and my mom so much. They have went over and beyond for us. I love you both THANK YOU!!!!!!!!!!!!!

I also want to say a very special Thank You to our Church back home. Mrs Helen and Bobbie are such wonderful people. Before we left they did a fundraiser for Alicia and the money that was raised is being used to help with the rent in our new apartment. This will give me time to care for Alicia and not rush back to work. I am so grateful to all of them. THANK YOU!!!!!! I can not wait for the day Alicia and I can return back to church.

Alicia has another appointment Friday, hopefully we will not have the same experience as last week. I will let everyone know how it goes. She is doing so well at this point, at this moment she is in the bathroom putting on lipstick. (it should be named face stick ) I better get in there before she turns into a clown. Thank you so much for all of the support and prayers.

Day +247

2009-02-21T15:06:00.002-06:00

Sorry I have not updated sooner. We were discharged early Thursday and everything is going well. Alicia is so happy to be out of the hospital. We had an appointment Friday and it was so hard to convince her that she was not staying at the hospital. She just kept saying " No Hospital ".

Our appointment Friday was a nightmare within its self. Of course my luck I had to get a nurse that obviously didn't get much sleep the night before ( my luck with nurses are not good lately) I am not the one to be messing with anymore and I think she realized it. It all started when she came in to do Alicia's vitals. Alicia does not like to be touched and ALL of the nurse's know this including her. Well she was insisting on pulling Alicia's sleeve up (and she had on short sleeves) and she wasn't having it. I told her to just take it over her shirt and she said fine I just won't take it and opened the door and pushed the machine into the hall. This made Alicia mad because she ALWAYS gets to take my blood pressure after they take hers. Well this nurse told her No because she would have to wipe it down if she played with it. She was pushing every button I had. I then told her that my child has had many blood pressure issues and by her not taking it she could be putting Alicia in jeopardy. She said she was not going "break" the policy. That was very strange to me because we have been here for 9 months and they have ALWAYS taken it over her shirt. Then she went to draw Alicia's blood and Alicia always gets to help but of course the nurse told Alicia No. She told Alicia to do her job and color and let her do her job and draw her blood. That was the last straw for me, I lost it. I told her not to tell my child what to do and I told her to get out of our room and send in Dr Davies.

Our nurse practitioner came in shortly after and I told her what had just happened. She got the machine from the hall and took her blood pressure (over her shirt) and it was very very high. She asked Alicia if she could do it under her shirt and Alicia let her on the first try ( she didn't just grab her and try to shove her shirt up like the nurse) With her blood pressure being high that made me even more madder. I asked to speak to the charge nurse so I could let her know what had happened and ten minutes later the Director came in instead. She assured me it would be addressed an I felt a lot better. She messed with the wrong Mee Ma.

Today we have been just relaxing and I started packing a few boxes. This excited Alicia so much. I let her pack a box also and she kept saying "we go home now" If all goes well we only have 16 days until we will be back in Kansas. I am still not getting excited yet as we all know the situation can change in a matter of minutes. When we are at the airport and out bags are on the plane I will get excited.

I want to ask everyone tonight when you are saying a prayer for Alicia if you could please include a friend of ours as well. I got a call from a very good friend this morning who's son has FA as well. He has had 3 transplants already and she just found out yesterday that his Leukemia has came back again. His name is Anthony and he is such an awesome person. Roxanne, his Mom, has helped me through so much during all of this and it just breaks my heart to know that this is happening to them. PLEASE say extra prayers for Anthony and his whole family.

Day +245 New Port

2009-02-18T20:23:00.003-06:00

Another long day!!!!!!!!!!!!!!! First of all Alicia is doing fine. She went down to the OR around 1pm to get her Mediport. She did a really good job and she wasn't scared at all until the Doc put the new NG tube she was getting on the bed beside her and she started crying. I was like HELLO can you please put that away so she can't see it. Here is a picture of Alicia going down to the OR......

Off to the or she went and to the waiting room I went. They had told me it wouldn't be that long and after an hour and a half I began to worry. Finally the doc came out and told me every thing went fine, they just had a hard time finding a place to put it since she is so small and has NO fat tissue at all. He said the port was going to be very noticeable due to the both of those. He then went to tell me that it might take her a little longer to wake up because in the middle of the procedure Alicia decided to wake up. I WAS LIKE WHAT IN THE WORLD!!!!!!!!!!!!!! I wanted to know right away if she would remember any of it and how it happened. He said they had a hard time putting her to sleep and had used the max amount of sedation for her size and weight but they had to give her more in the middle.

Alicia seems to be ok and she is not in any pain as I can tell right now. She is very proud of her New Line and even called Ne Ne and Mommy from the recovery room to tell them about it. Here are some pictures of her new port.............................

We are still on schedule to be discharged tomorrow which couldn't be soon enough. I am soooooooooooo ready to take her out of here!!!!!!!!!!!!!!!!!!! If plans go as expected we will see Doc Davies on Friday and get the exact date as to when we will be on the plane to HOME!!!!!!!!!! Our social worker is working on getting us a flight but no luck yet. I also have to figure out how I am going to get everything back to Kansas. We came with two suit cases and one baby doll and now we have soooooo much stuff since we have been her for nine months.

Thank you everyone for the prayers being said for Alicia. Hopefully we will get to go home soon.

Alicia's Journey with FA

Going Home

Hurry up and wait..............

quick update

Almost "8"

3infections later

IN CINCINNATI ONCE AGAIN

alot has happened

UNEVENTFUL NIGHT

ANOTHER LINE GONE

LEAVE IT TO ALICIA

COKE NOT SPRITE

Heading to Cincinnati

St Louis

long awaited update

CINCINNATI

Results from Cincinnati

Very determined FA Mee-Ma

HOME AGAIN

A Pinky PROMISE

Merry Christmas

LEAVING FOR CINCINNATI IN THE MORN

"Almost 7"

In Hospital again

long waited update

SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

P.S.

a quick update

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

YESTERDAY WAS A TOUGH NIGHT

Michelle is back in hospital

Doc Update

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

Finally home!!!!!!!!

were not in kansas toto

friday august 8 (I think) 2009

Michelle and Alica

Hospitalized

Michelle hospitalized

Still Alive!

Michelle and Alicia

Michelle Update

MY SURPRISE!!!!!!!!!!!!!!!!!!!

Still holding my breathe................

Here we go again..........

One week to go

Date set for Surgery

Out of the Hospital

GIVE ME A BREAK!!!!!!!!!!!!!!!!!!!!!!

Alicia ICU

Michelle update

Thanks for the prayers.

Michelle results

Michelle and Alica

Michelle released

Michelle update

Michelle Surgery

SORRY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Good News!!!!!!!!!!!!!!!!!!

RMH

FOOD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

A Sorrow but Sweet day........................

R.I.P Stacy

Day ???????????? DO NOT KNOW

UPDATE ON ALICIA AND STACY

WHAT A RIDE!!!!!!!!!!!!!!!!!!!!!!!!!

Colon infection

Going to Cincinnati

Good news

Stacy, Alicia hospital updates

Another FA child

Hospital

Alicia Hospitalized

Day +326

Day +325

Day +317

Day +309

Day +298

Day +295

Day +288

*update