Day +9

I decided to update early this morning, Alicia is still asleep, (actually she slept almost all day yesterday).But today will be a challange so I thought if I didn't update now than I might not get a chance.

I had told everyone of the fever Alicia spiked the other evening and they did blood cultures, well the Doctor came in yesterday afternoon and said there is bacteria growing in her blood. They do not know what it is exactly but it is making Alicia very sick. She was so weak yesterday she could not even lift her head from her pillow. They put her on a stronger anti-bioticthan the two she is already on. She did get up enough strength to talk to Erika but it was not for long only to tell her Mommy she loved her. She will not eat or even take a drink, I feel soooo bad for her. She wanted me to lay and hold her all day yesterday, which was perfectly fine with me. Around seven last night she did get a little energy, she watched half of a sponge bob movie and talked to Ne Ne and kristian for a few minutes but she went right back to sleep.

On top of the fevers the sores in her mouth and throat has started also. She keeps spitting in bucket I have put beside her and she complains that her mouth is hurting. I have pushed her morphine pump yesterday more than i have the whole time I have been here.

Some times I think I am going crazy sitting in this room alone, yesterday I even thought about having a conversation with Alicia's three foot Dora and Sponge Bob balloonsthat Denise and I bought her but I was scared if I started talking to them that they would answer me back than I knew I would of been admitted myself. ( I am just Joking) I am not that crazy though.

Alicia is stirring as I thought she would so i am going to end this, please everyone pray that this fever goes away fast and that the bacteria goes away and Alicia feels better soon. Thank you for all the support. I would most definatly lose it if I did not have all of you.

Mee-Ma

Day +8

FOR EVERYONE WHO DOES NOT KNOW, THE NEW PHOTO ON THE HOME PAGE IS OF ALICIA AND HER MOMMY, ERIKA. I HAVE THAT SAME PHOTO IN ALICIA'S ROOM. SHE LOOKS AT IT EVERY DAY. IT HELPS ALICIA FROM BEING AWAY FROM HER MOMMY TO BE ABLE TO SEE HER PICTURE.

YESTERDAY WAS ANOTHER DAY THAT WILL BE IN MY MIND FOR A WHILE, AS I HAD SAID IN YESTERDAYS POST ALICIA'S NG TUBE CAME OUT WHEN I WAS GONE WHEN SHE WAS VOMITTING SO A NEW ONE HAD TO BE PUT BACK IN. AND ONCE AGAIN IT WAS HORRIBLE. THEY WERE GOING BACK AND FORTH ABOUT IF THEY SHOULD PUT IN A NG TUBE OR A NJ TUBE. THE DIFFERNCE I UNDERSTOOD WAS THAT THE NJ TUBE WOULD GO PAST HER STOMACH AND IN TO HER INTESTANTS AND WOULD BE HARDER TO COME OUT SO I WAS ALL FOR IT. BUT STACY, ALICIA'S HEAD NURSE AND THE BMT DOCTOOR IN CHARGE SAID THAT THE NG TUBE WOULD HAVE TO BE PUT BACK IN BECAUSE THE NJ TUBE WOULD HAVE TO BE PUT IN IN RADIOLOGY SO PLACEMENT WOULD BE CORRECT AND WITH ALICIA'S ANC AT 0 THEY DID NOT WANT HER TO CHANCE BEING TRANSPORTED AND THE NG TUBE IS PUT IN RIGHT IN HER ROOM. I LET THEM KNOW THOUGH THAT I WAS VERY CONCERNED AND WOULD NOT BE LETTING THEM PUT A TUBE DOWN ALICIA LIKE THIS EVERYDAY AND IF IT IS TRUE THAT THIS STAGE OF TRANSPLANT IS ONLY THE BEGGINING AND SHE IS VOMITING ALOT NOW THAN THAT WOULD MEAN TO ME THAT THIS COULD HAPPEN ALOT AND I WOULD RATHER THE NJ WITH LESS CHANCE'S OF COMING OUT. SO THEO (ALICIA'S FRIEND PUPPET) CAME FOR ANOTHER VISIT AND THIS TIME HE EVEN GOT TO STAY FOR THE EVENING AND PLAY (WHICH IS NOT WHAT ENDED UP HAPPENING)

AFTER THE NG TUBE WAS PUT BACK IN, ALICIA COMPLAINED THAT SHE WAS ITCHY ALL OVER AND I COULD SEE WHY BECAUSE SHE HAD HAIR ALL OVER HER BACK AND IN HER BED AND SHE WANTED ME TO BRUSH HER HAIR, ONLY THIS TIME WHEN I BRUSHED IT ALL OF HER HAIR CAME OUT SO NEEDLESS TO SAY MY BABY HAS NO HAIR. SHE IS SOOOOOOOO PRETTY WITHOUT HER HAIR, I SENT ERIKA A PICTURE AND SHE HAD A VERY HARD TIME WITH IT. I MADE HER WAIT UNTIL SHE WAS ALMOST OFF WORK TO LOOK BECAUSE I NEW HOW IT WOULD EFFECT HER (AND I WAS RIGHT) SHE STARTED DOING MUCH BETTER AFTER SHE GOT HOME AND ANSHON SR HELD HER. I WISH SO BAD ERIKA WAS HERE, I KNOW THIS HAS TO BE HARD ON MY DAUGHTER. (IT WILL BE OK ERIKA. I PROMISE YOU TO TAKE VERY GOOD CARE OF ALICIA WITH EVERY INCH OF ENERGY I HAVE.)

DENISE ALSO HAD A HARD TIME WITH SEEING ALICIA LIKE THIS. AND SO DID HER DAUGHTER CASSIE WHICH IS ONE OF ALICIA'S FAVORITE COUSINS. DENISE BROUGHT ALICIA ALOT OF CUTE LITTLE HATS AND ONE WHICH A WHITE DORA ONE LIKE GILLIGAN WHERE'S IS ALICIA'S FAVORITE. I HAD TO WAIT TIL SHE WAS ASLEEP TO TAKE IT OFF. (THANKS DENISE)

ALICIA LOOKED IN THE MIRROR ALSO AFTER HER HAIR WAS GONE AND I THOUGHT IT WAS GOING TO SCARE HER OR BOTHER HER BUT ALL SHE SAID WAS "NOW I AM A BOY" I LAUGHED SO HARD INSIDE, BUT I TOLD HER "NO BABY YOU ARE STILL A PRETTY PRINCESS GIRL."

THE HAIR FAIRY CAME LAST NIGHT. I READ ALICIA THE STORY OF THE HAIR FAIRY BEFORE SHE WENT TO SLEEP, AND ALICIA PUT SOME OF HER HAIR UNDER HER PILLOW, SHE IS THE TOOTH FAIRY'S SISTER THAT COMES TO CHILDRENS HOSPITALS IN THE MIDDLE OF THE NIGHT IN HOPES SHE CAN FIND SOME HAIR FROM CHILDREN THAT LOST THEIRS AND IN RETURN SHE LEAVES THEM A SPECIAL GIFT BESIDE THEIR BED. SHE THEN TAKES THE HAIR AND GIVES IT TO TH BUNNIES SO THEY CAN MAKE BEDS FOR THEIR BABIES.

ALICIA WOKE UP THIS MORNING AND THERE WAS A DORA ADVENTURE SET BY HER BED. SHE LOOKED AT IT BUT HEN LAYED RIGHT BACK DOWN. SHE HAS BEEN FIGHTING A FEVER ALL NIGHT EVEN AFTER THREE DOSES OF TYLENOL IT IS STILL ABOVE 100. SHE ALMOST VOMITTED THIS MORNING BUT LUCKLY DIDN'T. SO THAT IS WHERE WE ARE AT NOW. I WILL UPDATE IN THE MORNING, PLEASE PRAY FOR US TODAY, I HAVE A FEELING THIS IS GOING TO BE A HARD DAY FOR ALICIA.

MEE-MA

Day +7

Alicia had a fairly good day and night. She did have another episode with her hair and she said it was itching and wanted me to brush it and when I did she lost alot more of it. I am kinda scared to brush it this morning, but I decided that if it bothers her alot today than we would just be done with it and shave it since the "Hair Fairy" was coming tonight.

Alicia got to talk to Daddy last night and that helped her alot. Anshon is such a good father. Alicia also talked to mommy extra long last night a couple of times and I could tell a big difference in her spirit after she talked to the both of them so I pinky sweared to her that she could call home when ever she wanted to.

She also talked to Ne Ne and aunt Sue (she is a very good friend who has taken care of Alicia since she was born when me and Erika are at work and she also takes care of the boys) Alcia and Ne Ne also made a pinky swear that Ne Ne would be back soon. So over all alicia had an ok day yesterday.

Now on to this morning. Her counts came back an they are all still the same. Her WBC is .1 ANC 0.0 HBG 10.2 and platelets down to 53,000.

I woke up this morning and there was a patient attendant in the room and she said she was there to give me a little break so I took up the offer and wnt to the RMH for a real shower. But boy was that a misstake. I came back to Alicia and NO FEEDING TUBE. While I was gone she had vomitted and her tube came out. So at two this afternoon she will be having another one put in. Alicia keeps telling them No so I am sure this will be no fun at all. Please pray that this one stays in.

I will up date later, thank you everyone for all of the support.

Mee-Ma

Day +6

Wednesday, June 25, 2008 1:08 PM CDT

Day +6

Were to start??????? Well lets start with last night, Alicia did pretty well but she is missing her Mommy alot!!!! She keeps asking me "Mommy comin" ans when she tlks to Erika which she does three times a day, every Morning, before Erika goes to work and every night before she goes to sleep. And I can tell every day that I talk to Erika it is getting more and more harder on her to be away from Alicia. I know I have not mentioned Erika very much in my entries and I am very sorry Erika for that, and I want everyone to know and understand that Erika and Alicia are very very very close. They are a splitting image of eachother, I have a picture they took together the day we left and tina is scanning it for me so I can put it here on Alcia's site. And to make it worse even though Erika is Alicia's mommy and she misses her little girl alot, Erika is my little girl (ok she might not be little she will be 22 a month from today) but she is still my "Girl" (my only child) and I am missing her sooooooooo much. I have never been away from my daughter this long ever in our whole life. WE MISS YOU ALOT ERIKA. She will be here soon, the boys are staying home with daddy and Erika is coming, I can not wait. And Alicia also wanted me to tell her Daddy that she misses him and her brothers also. (I have not seen Jayshon since her was 2 days old)

This morning was also a hard one for us (ME) also. When I woke up around seven I went to give Alicia a kiss and my heart fell through my stomach. There was hair all over her pillow. Alicia was twirling it around her finger and pulling and it would come out still around her finger. She kept itching and asked me to brush it (which she never does) and by the time I was done brushing it I had filled a freezer zip lock bag (the big ones) full of her hair. It took everything inside of me not to break down but once again I pulled myself together and told her how pretty she was. Alicia acts like it is no big deal so that helped me alot and now I am fine with it.

The "Hair Fairy" is coming tomorrow night. Child life is going to come in and tell her a story about how her hair will go to the bunny's or something and how they leave her a nice present and take her hair. (GREAT)

She also is having major pooping problems again. She is filling diapers faster than I can change them so they took another culture and brought more diapers. (GREAT AGAIN)

But besides all of those issues she is actually doing pretty good. Right now she is eating pudding and coloring dora pictures. We are having another Sponge Bob movie night (I need the prayers now) We have watched Sponge Bob Four nights straight now)

I will update later and I would like to end this with an poem my very good friend back home (Roxanne) wrote for and Alicia and sent to me.

We love and miss you very much Mommy, Daddy, Anshon jr and Jayshon.

Mee-Ma

P.S. Erika we just took a picture with the Dora Book and Cd you sent Alicia. She loves it and playes with it every day. And she got the Dora dress two days ago. That is the outfit she will be wearing when she leaves the hospital.

Poem for Alicia by Roxanne: written 6-18-2008

Little one so precious and pure!
As we pray for healing we also pray for a CURE!!

So full of laughter so full of life!
I have dreams of some day becoming a Wife!!

Your onery as ever as we all know!
With that mischevious smile, you give us a show!!

Your Mee-Ma's heart, she will alway love you!
Mommy, Daddy, brothers and sisters too!!!

Your gods most unique flower planted!
And I pray this one request be granted!!!

For tonight when you lay asleep!
Let you Mommy and Mee-Ma know don't worry don't weep!!!

As you are brave and you are strong!
God will and has been with you all along!!

By Aunt Roxanne

Thank you so much Roxanne

Day +5

Yesterday was not as well as the past few days, we had a few bumps, but we got past them.

Our day started off with Alicia pulling off her dreesing to her C-Line and they had to do a re-dressing which she does not like at all. Usually it only has to be done once a week on Friday, but she pulled it off yesterday so it had to be replaced.

She had a pretty good day after that with just some diareha and upset stomach ( no vomitting). Then about 8pm she had her NG tube put in. She did not like that at all (but who would). It was the worst thing I have seen so far. They wrapped my baby up in a blanket and held her head and inserted a tube down her nose, it was horrible, she screamed and gagged yelled my name. I did not let her see me cry but when I left the room I bawled like a baby. I pulled myself together and went back in and told her how pretty she looked. After the tube she went to sleep and did not want anyone to touch her but me. I stayed til she was all the way asleep, then went to the RMH for some much needed rest since Denise was leaving today. (Denise left at 8 this morning)

Today Alicia is still not acting like herself. She is still sleeping only waking up long enough to make sure I am still here and going back to sleep. (I wish this was me going through this not her)

Her CBC is the same as yesterday. Still 0.0 ANC and .2 WBC. Her Platelets are still holding at 99,000 from the transfusion on Saturday and HBG is 10.2.

I want to check on Jacy before Alicia wakes up so I will update tomorrow.

Mee-Ma

Day +4

Alicia had another good day yesterday but then last night she got a fever and it has went off and on all night. The took another culture from her but so far they all have came back negative. Her fever is still haning around this morning. She did feel well enough to eat a bowl of cereal.

Her counts are about the same this morning, her WBC is .2 her HBG is 10.7, her ANC is still 0.0 and her platelets are still holding at 134,000 from the transfusion.

Tina Jacy and Keith came to see Alicia yesterday. Alicia was sooo happy to see them. She even made keith a special little gift. Jacy is having surery today so keep her in your prayers.

Alicia's little butt is also getting sore from the diareha, (Thanks Charisse for the advice I took it and it seems to be working a little, I wish I would of used the cream.) Here they call it "The Magic Butt cream".

Alicia is not feeling well now so I have to run, sorry for the short update.

Mee-Ma

Day +3

Alicia had another good day yesterday!!!! She has still been her little wild self. The only bumps yesterday was with diareha (very bad) I bet I changed 20 diapers yesterday. It brought back memories of when she was younger. She still has the pooping problems this morning, I changed one a few minutes ago that was the worst!!!! Ok enough about poop. She didn't have problems with her BP or vomitting yesterday, although I thought while we were talking to Lori and Sarah on the phone yesterday that she was about to but it was a false alarm. (sorry Lori)

She feels well this morning also, She even felt like standing in the shower so she could have a sponge bath and she even let me brush her hair. ( I cried while I was brushing it cause thoughts came to my mind that this would most deffinatly be the last time I would brush her hair for a long time.) I told myself that I was not going to brush it because she doesn't like it when it hurts to brush her hair, and it was going to fall out so why put her through the pain, but this morning she asked me to brush it so i did. (very gently).

A nurse just walked in our room to stop one of Alicia's machines from beeping and she was a VERY LITTLE nurse and Alicia started looking at her wierd and I thought OMG "please don't say anything" but of course she did.LOL
she said "Hey your little" I had to laugh!!!! I told her "Alicia your little also" and Alicia just started giggling.

There wasn't much change in Alicia's counts this morning. Her WBC is .7 her ANC is still 0.0 her HBG is 10.4 and platelets 177,000 (she did get a platelet transfusion yesterday, they were back down to 12,000).

They are also going to reduce her morphine but not remove it completly. The Doctors said that the worse days are almost here so they do not want to get ehind in her pain manaement but they do not want her to get to much if not neded also. I hope she does not start having alot of pain when they reduce it.

Yesterday I actually ot some rest. I went to the RMH and took a nap for four hours with out being woke up in between. It felt wonderful!!! (Thanks Denise)

Alicia's breakfast just arrived so she needs me, she asked for spegghetti this morning but I finally got her to agree on pancakes and eggs and she said ok if she could have ketchup on her eggs. (what ever it takes)

Mee-Ma

Day +2

EVERY THING WENT VERY WELL AGAIN YESTERDAY FOR ALICIA. I AM GETTING KIND OF NERVOUS THAT EVERYTHING IS GOING AS WELL AS THEY ARE. THE LORD MUST BE HEARING ALL THE PRAYERS BEING SAID FOR HER AND IS ANSWERING THEM.

ALICIA'S COUNTS YESTEERDAY WERE ALMOST GONE EXCEPT FOR HER HBG WHICH WAS AT 10.1 (WOW)HER WBC WAS AT .1 AND HER ANC WAS 0.0. HER PLATELETS WERE AT 20,000 BUT SHE DID GET A TRANSFUSION THE DAY BEFORE LAST AND I AM SURE SHE WILL NEED ONE TODAY AS WELL. I AM CURIOUS WHAT HER COUNTS ARE TODAY, THE RESULTS ARE USUSALLY HERE AROUND 8AM SO I WILL UPDATE ON THEM TOMORROW.

ALICIA'S BP IS STILL DOING LITTLE TRICKS BUT THEY HAVE BEEN ABLE TO KEEP IT UNDER CONTROL VERY WELL, AND SHE DID START COMPLAING THAT HER TUMMY HURT AROUNG 10:30 LAST NIGHT BUT SHE DID FALL ASLEEP AND SHE IS STILL SLEEPING SO HOPEFULLY THE NAUSIA HAS PAST. BUT THOSE WERE HER ONLY BUMPS YESTERDAY BESIDE HER BEING BAD FOR JO AND JACY.

JO AND JACY CAME UP YESTERDAY AND SAT WITH ALICA WHILE DENISE AND I WENT TO WALMART. JO SAID SHE WAS A LITTLE WILD CHILD. (LOL, THAT IS AN UNDERSTATEMENT) THE GIRLS SAID SOME PRINCESS'S CAME INTO THE ROOM AND ONE WAS DRESSED LIKE ARIEL AND ALICIA TOLD HER SHE COULD SEE HER BOOBIES. THEY SAID EVERYONE LAUGHED SO HARD AND IT JUST THREW OFF THEIR SHOW. (LEAVE IT TO ALICIA) I AM GLAD I WAS NOT HERE FOR THAT ONE... THANKS JO AND JACY FOR THE BREAK!!!!!!!

MY MOM SENT HER THE CUTEST DORA DRESS YESTERDAY. ALICIA KEEPS ASKING TO WEAR REAL CLOSE AND NOT PJ'S SO I AM GOING TO PUT IT ON HER AFTER SHE WAKES UP AND TAKES A WASH UP (IF SHE FEELS UP TO IT) I JUST HOPE SHE DOES NOT THINK SHE CAN LEAVE SINCE SHE HAS "CLOTHES ON" BECAUSE SHE HAS BEEN TELLING EVERYONE ALOT LATELY THAT SHE IS "ALL BETTER" AND WANTS TO GO BYE-BYE. I MIGHT JUST WAIT TO PUT THE DRESS ON HER. THANK YOU VERY MUCH MOM FOR THE DRESS, IT IS SOOOOOO VERY CUTE. ALICIA LOVED IT. YOU ARE THE BEST!!!!!!!

WELL ALICIA IS WAKING UP,EVERYONE PLEASE PRAY FOR ANOTHER GOOD DAY. I WILL UPDATE MORE TOMMOROW.

MEE-MA

Day +1

YESTERDAY WAS A VERY GOOD DAY!!!! IT TOOK ALL OF 25 MINUTES FOR ALICIA TO GET HER CELLS. SHE IS NOW B+ AND NOT O. SHE DID VERY WELL DURING THE TRANSPLANT AND THE ONLY PROBLEMS SHE HAD DURING THE DAY WAS WITH HER BP. (IT SEEMS LIKE HER BP HAS BEEN GIVING US PROBLEMS EVERY DAY). THEY ENDED UP GIVING HER SOME DIFFERENT MED AND HER BP CAME DOWN AND HAD STAYED DOWN SINCE.

THE DOCTOR SAID YESTERDAY THAT THE NEXT THREE WEEKS WILL BE THE MOST CRITICAL..... UNTIL HER CELLS START TO GRAFT THEY WILL WATCH HER VERY CLOSE, SHE WILL BE GETTING THE MOUTH SORES AND THE HAIR LOSS SOON. I THINK THE MORPHINE IS KEPING HER VERY COMFORTABLE FOR NOW THOUGH. PLEASE CONTINUE TO PRAY THAT HER CELLS START TO GROW SOON!!!!!!!!!!

ALICIA WOKE UP TODAY IN A VERY GOOD MOOD AGAIN, WHICH IS GOOD NEWS TO ME. WE ARE WATCHING DR. DOOLITTLE 3, AND NE NE SHOULD BE OVER HERE SOON, SHE IS AT THE RMH. I HAVE NOT WANTED TO LEAVE ALICIA AT NIGHT SINCE HER BP EPISODE THE OTHER NIGHT, I FEEL LIKE I SHOULD BE HERE FOR HER JUST ENCASE SHE NEEDS ME.

I FIMD MYSELF THINKING ALOT ABOUT CAMP SUNSHINE. I SOOOOO HATE THAT WE WILL NOT BE THERE THIS YEAR. THAT IS THE ONE TIME OF THE YEAR THAT I FEEL LIKE I CAN TOTALLY BE MYSELF AND TALK OPENLY TO PEOPLE WHO UNDERSTAND AND IS GOING THROUGH THE SAME THING. IT MAKES ME FEEL LIKE I RELIEVE SO MUCH INSIDE OF ME AND HELPS SO MUCH WITH THE YEAR THAT FOLLOWS. ALICIA GOT A VERY CUTE CABBAGE DOLL FROM MARY ANN YESTERDAY (HE FIRST CABBAGE DOLL) ITS NAME IS MEKALA, ALICIA LOVED IT!!!! ALICIA GOT VERY ATTACHED TO MARY ANN THE FIRST YEAR WE ATTENDED CAMP IN 2005. WE WILL BE THERE IS 2009, AND I CAN NOT WAIT!!!! THANKS MARY ANN.

PRAY FOR ANOTHER GOOD DAY!!!!

MEE-MA

Day 0!!!!!!

TODAY IS THE "BIG" DAY. WE ARE SOOOOO EXCITED. IT IS SET FOR 1PM (TIME IN CINCY) WHICH IS NOON IN KANSAS. ALICIA WOKE UP THIS MORNING INA VERY GOOD MOOD, BEING SPUNKY AND BAD AS SHE IS JUST HER SELF. DENISE AND I WENT TO SHOWER AND STOPPED BY THE GIFT SHOP AND WE GOT INTO A LITTLE SPAT ABOUT WHO COULD GET HER THE BIGGEST BALLOON, THE FIRST DAY DENISE WAS HERE HER TINA AND I WENT TO WALMART AND KEITH AND JACY STAYED WITH ALICIA AND DENISE BOUGHT HER THE BIGGEST BRAT DOLL IN THE WHOLE STORE. IT WAS ALMOST THE SIZE OF HER. SO THE COMPETITION WITH THE BALLOONS WAS KINDA FUN. BUT I KNOW MY GRANDDAUGHTER BETTER THAN ANYONE AND I KNEW WHICH ONE SHE WOULD LIKE THE BEST SO I BOUGHT HER A VERY HUGE DORA BALLOON AND DENISE GOT HER SPONGE BOB. SHE LOVED THEM BOTH. (BUT MINE WAS BIGGER!!!!)

AND TO MAKE IT BETTER IT MATCHED EVERYTHING IN HER ROOM. THERE IS DORA EVERY WHERE. TINA MADE HER THE CUTEST COUNT DOWN CALENDARS WITH HER 100 DAY COUNT DOWN WITH DORA'S ON THEM AND TODAY A PACKAGE ARRIVED FROM JOHN DIANNE AND MICHELLE AND IT WAS A HUGE DORA POSTER (THANKS GUYS SHE LOVES THEM)

ME AND DENISE ARE ALSO DRESSED LIKE TWINS. WE LOOK LIKE TOTAL DORKS,WHEN WE WALK DOWN THE HALLS EVERYONE IS STARING AT US AND IT WAS EVEN WORSE WHEN WE WERE CARRYING THE HUGE BALLOONS.

O MY LORD GOT TO RUN THE NEW CELLS JST GOT HERE, AND THEY ARE EARLY!!!! I WILL UPDATE IN A LITTLE WHILE, MY HEART IS BEATING SOOOOOO FAST... HERE WE GO!!!!!

MEE-MA

Day -1

Last night was another hard one for Alicia. After most of the day with ups and downs with her BP, ( mostly ups) they finally got it under control (at least I thought) arond nine pm. Denise and I thought It would be best if I stayed at the RMH for another night of sleep since we both knew I would not get much tonight with her transplant being tomorrow, but I was only over there less than an hour when Denise called and said her BP went very high again ( 171/101) and she was now complaining of her head hurting so I came straight back here and Denise went to stay at the RMH. They finally got the BP back under control around midnight and we both got a little sleep. Around 5:00 this morning she woke up grabbing her stomach and crying and then came the vomitting again. They have given her more med to help and dhe is resting a little now but as for myself I will have to survive today with the four hours of off and on sleep.

Today is Radiation. She is going to be picked up by ambulance at 10am and taken to the Barrett Center. She will be sedated again so hopefully it will go well and she can get some much needed rest before her BIG DAY tomorrow.

I will update on how her radiation goes later this afternoon and also with her Lab counts. Please will everyone say an extra prayer for Alicia today, I have a feeling inside that this day will be a challenge for her.

Very nervous and tired Mee-Ma

Day -2

I finally got a full 5 hours of sleep last night with out being woke up every hour to a fever or vitals which Alicia just totally dislikes or runny poop. Denise stayed the Night at the hospital with all of that and I went back to the RMH and got some much needed rest. Alicia did pretty well last night Denise said. Denise was tired this morning (and I know all to well why she was).
I was woke up about 5:45am though by a call from Alicia's Nurse because Alicia needed red blood and they wanted to know if they could start it without me here which I said was ok and told them I would be right over, but I did sleep well last night.

Today Alicia has had a very high blood preasure. The highest bein 168/104. They are trying different medicines to get it under control. It seems to e going down a little but not low enough yet. Hopefully they will get that under control soon.

Her Radiation is scheduled for 10:30 in the morning so I will probably stay with Alicia tonight. I want to watch her close.

Alicia was sooooo happy to see Denise. Now she wants nothing to do with me. When it is time for her vitals she will sit so still for Denise, and she does not want me to sit by her or hold her hand, only Ne Ne. I know she still loes me but she is so happy Ne Ne is here, and actually I am kinda glad I got to breath today, I am sure she will be my friend tomorrow.

Two more days until "HER SPECIAL DAY" I am very ready!!!!! I will let everyone know how Radiation goes tomorrow.

Mee-Ma

Day -3

Last night was a hard one for Alicia. Everything did a big Turn around about 5pm last night. Alicia started complaining that her tummy was hurting and then she started with diareha. She filled 6 diapers within 30 minutes. She slept very restless and had diareha all night long, then aroun six this morning the vomitting came, and of course the fever and chills followed. She is asleep right now but I believe it is from all the medicine she is getting, they did more cultures on her but we have no results yet. I am glad after today that she will only have one more day of Chemo, but I heard the Radiation she will be getting on Wednesday is awful also.

Denise is on her way here now. I talked to her earlier when she was in Atlanta so she should be here within the next couple of hours. I am sooooooo glad I have help on the way.

I found out earlier that we will be moving rooms to 519. There is something wrong with the sink in the room we were in. Alicia does not even feel like moving so I hope we can get her moved without upsetting her stomach.

Thanks again for all the support.

Mee-Ma

Day -4

Alicia had a really good noght last night. Teh Hydrocortozone helped alot and she did not have any fevers or chills. We both got over 8 hours of sleep, and WOW did that feel good.

Today she is complaining alot of her stomach hurting. Dr Davies said that is also normal part of the Chemo. They are giving her another type of medicine to help with that.

Her ANC jumped to 3.49 from yesterday and her WBC went up to 3.46. She also said that was Normal. Her Platelets went down to 70,000 and Dr Davies said she would probably get another transfusion tommorrow or the following day. Her Hbg is at 8.9.

I am sooooooo happy my twin sister will be here tomorrow, Alicia has been talking about it all morning. I know it will feel very good to see my family. I really miss my Dad toaday with it being Fathers day. I got to talk to him for a while this morning. He is very special to me.

I want to wish all of the FA fathers, and every other Father a Very Happy Fathers Day.

Mee-Ma

Day -5

Day -5

Alicia had a pretty rough night last night. About 45 minutes before ATG was finished (around 11:15) Alicia got a fever. It was up to 102.9 so the drew blood cultures and gave her tylenol and benadryl and started her on an antibiotic. (well they were supposed to start her on an antibiotic) Not long after she got a fever the chills came and then the hives started showing on her face. Of course I get very nervous but I was trying very hard not to let Alicia know I was scared. Alicia got very tired real quick so I had asked the nurse for the 3rd time about her antibiotic and she told me she was leaving for the night and assured me the next nurse would start it even if we were asleep. So Alicia and I tried to get some rest with the fever and all.

I woke up around six this morning and the new nurse told me that they were going to start her 2nd round of antibiotics in an hour so I asked her what time had they given her the first round and she told me that she was not for sure because the nurse before her last night had given it to her. I could not believe what I was hearing. I told the nurse that she had not given it to her so she went to check and came back to let me know that I was right. DUH!!!!! so needless to say Alicia did not get her antibiotic until seven this morning (which she still had a fever) and 30 minutes after she recieved the medicine her fever was gone. Now I definatly will not be getting much sleep since I have to make sure the nurse's are doing what needs to be done. They are messing with MY BABY!!!!! (i wasn't real mean)

I guess the fever and the chills are "Normal". So Dr Davies said she will be given Hydrocortozone in the 5th hour to try to be ahead of the fever since she will most likely get a fever everytime during the ATG. (GREAT)

Her Counts are dropping very fast. Today her WBC was 1.6 from 3.4 yesterday, her hgb down to 7.9 from 8.7 her platelets are at 115,000 from the transfusion yesterday and her ANC is at 990 up from 510 yesterday. Dr Davies said her counts are doing what they are supposed to be doing.

They added Cytoxen also today on top of the Fludarabine and ATG, so I am watching her close for any of the side effects to it.

Thank you so Much Michelle, John and Dianne for the VERY CUTE!!!! Dora Pj's and thank you Tina,Jo, Jacy, Keith and Cameron for Alicia's care package and Thank You so much Mom for the outfit for Alicia, It is sooooo cute. And Thank you everyone for keeping my baby in your prayers.

Mee-Ma

P.S Only 2 more days until Ne Ne gets here!!!!!!!

Day -6

Alicia had a pretty good first night in the hospital. She was up late and did not go to sleep until after Midnight but she slept through the vitals they took at 4am which they do every four hours. She did wake up during the 8am vitals though.

I actually got around 6 hours of sleep myself. It felt very good!!! I think I was just so tired from losing so much sleep that my body said it was time to rest no matter what.

The Doctors did rounds around 9am and Dr Davies was there as well. I really like and trust Doctor Davies, she cares alot about the kids. They also draw blood for a cbc every morning at 4am, her platelets dropped to 12,000 and her hbg to 8.6 so Dr Davies said she would need transfusions which she is getting her platelets as I am wtriting this.

After her Platelets are finished she will be starting her Chemo which will start with the Fludarabine which will last for 30 minutes and she will get ATG after that which will take 8 hrs, they said some kids have reactions to the ATG so it has me a little nervous.

Tina and the girls will be here in a littlw while so hopefully I will be able to sneak away and eat. Alicia had a problem with me leaving the room with her by herself at first last night just so I could go to the bathroom but today she is doing alot better with it. The first time she tried to pull a chair up to the door so she could open it and come find me, but after she knew I was coming right back she was ok with it.

well I will update later, Alicia is fighting the nurse that is here to take her vitals for the 20th time today. She keeps telling them "No All done".

Mee-Ma

Day -6

I actually got six hours of sleep last night. Alicia was awake past Midnight but when she finally went to slepp she was out like a light bulb.

I found out alot of the ropes yesterday about how things will be. They do vitals on all the children every four and Alicia went to sleep after the one at Midnight and slept through the one at 4am (so I heard cause i slept through it also)but the one at 8am woke her so that is when our day began.

The Doctors did rounds at 9am and Dr Davies was there. She is such an awesome Doctor and cares alot for our children. Alicia will start her Chemo today. One medication will last for 30 minutes for four days which is Fludarabine and the ATG will last for 8 hours for I believe five Days ( i might be wrong on the total days for that one) They said some kids have reactions to the AGT so it has me a little nervous.

Alicia's platelets have also dropped to 12,000 and her hgb to 8.6 so Dr Davis said she will probably also be getting a transfusion. She did say that the Agt is supposed to boost her platelets a little also.

Thank you again to everyone who is praying for my baby. And thanks for all of the support.

Mee-Ma

June 12, 2008

Well the day is here. Alicia gets admitted to the BMT floor today. They will be taking her to the floor just after her MRI is done.

She is till sleeping now, which I just decided to give up on as far as for myself. I seen every hour on the hour last night. But at least now I am getting used to functioning on a couple of hours of sleep because I am sure there will be alot more of those in the very near future.

Alicia had a good time last night. We stayed at Tina's and they are going with us to be admitted and then on to Jo and Jacy's many appt's. Keith gave her an extra long Motor Cycle ride. Alicia loved it. She kept telling Keith "more", "More", so of course he did. There has not been many things Keith has told Alcia "no" to. They have a cool little special bond. Alicia also played alot outside yesterday. She totally loves their dog J.R. I just kept looking out the window at her and tears would come to my eye's when I thought that this would be the last time for a while that she would get to go run in the grass and play with the dog and even get to go outside and play. Then more tears fell when I looked at her pretty long hair and thought it would be forever until I would get to put it in cute little pony tails. Then I would freak because I started thinking that her Chemo was starting tomorrow and it was "Friday the 13th". Then to make it worse I would look at Tina and she had big tears in her eyes as she was watching Alicia also. Finally I had to tell myself to stop and we talked of more happier things.

My Mom has been such a Huge help to me and I wanted to let her know if she is reading this that I love you very much Mom and I am so Lucky to have you and it takes alot off my mind to know that I have someone back home I can depend on!!!!! She is sending Alicia little gifts every other day that Erika bought for Alicia. I know that will bring smiles to my baby's face. I have called my mom several times since I have been here and asked for favors and I never had to ask twice. My mom had it done probably beofre we ever hung up. ( maybe that is going a little overboard). But I want to thank you very much Mom.

And I also owe Tina alot of Thanks. She has been soooooo much support for us. I feel she is such a true friend and I do not know how I would of even made it this far without her. Thank you so much Tina.

And I also want to thank Teresa and Dianne. You both have also helped me through alot and Thank you Dianne for the gifts you have sent Alicia. It is sooooo important to have friends to be able to get through times like these and I am so greatful to all of you.

Well it is time to wake Alicia. And off to the first day of the beginnign of my baby's new chance at life. I will kepp everyone updated as much as I can.

A VERY nervous Mee-Ma

June 10, 2008

Time is moving so fast it seems. There is only two days until we are admitted and three days until Alicia starts her Chemo. I am getting more nervous by the hour now instead of by the day!!!! I am praying so hard that my baby will be Ok through it all. She is such a strong little girl so I know she will fight.

We got a call yesterday and they want to do another MRI on Alicia. She said there was something in this last one done Saturday that concerned the Doctor and She wants to see the rest of Alicia's spine. She did say the Head looked good but she could only see the top of her spine and wanted a picture of the rest. So we have to be at the hospital at 10 am Thursday for another MRI and then we will be admitted after that. Please pray there is nothing wrong with this MRI!!!!!!!

on top of everything little Alicia is going through we got a call from Erika yesterday and the person who was keeping Alicia's dog had let her out to potty ans she never came back. Alicia has had her since she was 6 weeks old, her name is Taby. Alicia named her and they were very close. Tina had blown up a picture of Taby to put beside Alicia's bed at the hospital so I had to get rid of it. I just hope Alicia does not ask many questions when we get home. I will miss Taby alot also.

My twin sister Denise will be here in six days. I am sooooo very happy. I miss my family alot and I can not wait to see Denise. Alicia is very excited also. Denise and Alicia are very close. Alicia calls her Ne Ne. I can not wait to see the look on Alicia's face when she see's her. ( wow actually something to look forward to, that feels great!!!)

Well Alicia is telling me it tis time to go play so I will update as soon as I know anything about her MRI.

Mee-Ma

June 3, 2008

I HOPE THIS BACK GROUND MAKES IT A LITTLE EASIER TO READ THE UPDATES ON ALICIA, TINA HELPED ME CHANGE IT SINCE I KNOW NOTHING ABOUT COMPUTERS, I HAD SEVERAL PEOPLE SAY IT WAS HARD TO READ IT THE WAY IT WAS SO I HOPE THIS HELPS.

I AM SOOOO VERY TIRED. I KEPP TELLING MYSELF TO PULL IT TOGETHER THAT WE HAVE A LONG ROAD AHEAD OF US, BUT ALL THESE TESTS ARE STARTING TO WEAR ME DOWN, BUT I KNOW OR AT LEAST THOUGHT THEY ARE ALMOST OVER.

MONDAY WAS A BUSY DAY. ALICIA HAD A CT SCAN DONE AND SHE HAD TO BE SEDATED. SHE IS SUCH A LITTLE BUSY BODY THAT IT WAS HARD TO GET HER TO GO TO SLEEP. THEY GAVE HER FOUR DOSES BEFORE SHE FINALLY FELL ASLEEP SO TO THE WAITING ROOM I WENT. ( I SURE AM GETTING VERY SICK OF WAITILNG ROOMS!!!) WELL I GUESS DURING THE SHORT 15 MINUTE SCAN SHE WOKE UP SO THEY GAVE HER EVEN MORE MEDICINE SO NEEDLESS TO SAY SHE DID NOT COME OUT OF SEDATION FOR A VERY LONG TIME. AFTER BEING IN RECOVERY FOR THREE HOURS THEY DECIDED TO GO AHEAD AND LET ME TAKE HER HOME SO ME AND JO LEFT CARRYING ALICIA STILL IN A DEAD SLEEP????? ( I THOUGHT IT WAS VERY STRANGE THAT THEY WOULD LET US LEAVE LIKE THAT BUT I GUESS AFTER ALICIA TRIED TO KICK ONE OF THE NURSES SHE PROBABALY DID NOT WANT TO TAKE ANOTHER CHANCE OF GETTING KICKED AGAIN LOL!!!)

WE GOT BACK TO TINA'S HOUSE AROUNG FIVE AND THEN CAME A CALL FROM THE RONALD MCDONALD HOUSE SAYING THEY HAD A ROOM FOR US FINALLY, ALICIA WAS BARELY AWAKE AND ACTING VERY, VERY, VERY DRUNK SO WE FED HER AND HOPED THE FOOD WOULD SOAK UP ALL THE MEDICATION SHE STILL HAD IN HER BUT NO LUCK.
SO OFF TO THE RONALD MCDONALD HOUSE WE WENT, ALICIA WAS SOOO FUNNY ALL THE WAY THERE. SHE MADE NO SINCE AT ALL!!!! I WAS SO GLAD WHEN THE TOUR WAS OVER AND I COULD FINALLY LAY HER DOWN BUT OF COURSE SHE HAD JUST WOKE UP FROM BEING TO SLEEP FOREVER SO SHE WANTED TO PLAY WAY PAST MIDNIGHT. AND I WONDER WHY I AM SO TIRED!!!

THE ALARM WENT OFF AT 6AM, AND WE STARTED ANOTHER DAY OF MORE TESTS. I THOUGHT TODAY WAS THE LAST DAY BESIDES THE CONFERENCE CALL TOMORROW WITH DR DAVIES,MICHELLE CROCKET AND ERIKA. WE HAD TO HAVE BLOOD DRAWS AT 8AM AND HER GFR TESTS ON HER KIDNEYS WERE TO START AT 8:30. SHE HAD TO HAVE DYE INJECTED AND BLOOD TAKEN EVERY 30 MINUTES AFTER WAITING FOR TWO HOURS AFTER THE DYE WAS INJECTED. EVERYTHING WENT PRETTY WELL WITH THE TESTS AND WE WENT BACK TO THE RMH TO NAP. THEN WE WENT TO TINA'S TO STAY THE NIGHT THERE. I REALLY NEEDED A GOOD NIGHTS REST AND LAST NIGHT WITH BEING IN A STRANGE PLACE AND THE LONG DAY WITH ALICIA AND NO SLEEP AT ALL I AM SO THANKFUL TO BE HERE AT TINA;S WHERE I KNOW I WILL BE ABLE TO SLEEP GOOD.

I GOT A CALL FROM MICHELLE ( SHE IS THE BMT NURSE COORDINATOR ) ABOUT THE TIME I GOT TO TINA'S AND SHE SAID SHE HAD TO ADD MORE TESTS, (OF COURSE ) THE CT SCAN SHOWED THAT HER STOMACH WAS ENLARGED SO WE HAVE TO GO FOR MORE X-RAYS TOMORROW AND IT ALSO SHOWED SEVERAL ABNORMALITIES IN HER NECK AND SHOULDERS SO THEY ALSO WANT TO DO AN MRI WHICH I BELIEVE IS GOING TO BE DONE SATURDAY. BOY DO I NEED STRENGHT RIGHT NOW.

I WILL LET EVERYONE KNOW HOW THE CONSULT GOES TOMORROW BUT I AM OFF TO BED NOW IF I CAN MAKE IT THERE BEFORE I FALL ASLEEP WALKING.

VERY TIRED MEE-MA