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Sunday, June 29, 2008 5:39 AM CDT
Day +10
Alicia had a little better day yesterday, and I do stress little. She finally broke her fever last night but the sores and mouth pain are getting worse, she is such a strong little girl. She has not cried one time yesterday, she is caughing up alot of mucus (however you spell it).She is ok as long as she has a bucket beside her and a napkin to wipe her mouth. POOR BABY. There is still no wrod on what type of bacteria is making my baby sick. They took more blood for more cultures and stools for tests also but I have not heard anything yet. Hopefully when the Doctor does rounds I have some results.
I do have some good news!!!!!!! Dr Davies stopped me in the hall and said she had seen that Alicia's labs showed a bit of what looks like the beggining of some graftment. She said it was a very slight detection and she is still cautious but It was news I needed to hear very badley. Her counts yesterday were Platelets 13,000 which she did get a transfusion for, HBG 9.6, WBC .2, and ANC .05 (YES!!!!!) Her labs from thisd morning are still not here I sm ptaying this means the new cells ar working.
I also wanted to let everyone now that in the near future I am going to be changing where Alicia's site is. Teresa (Emma's mom, Alicia's little friend with FA,)has been working very hard on making her new site. (Thank you very much Teresa) This new blog will be so much better. I will be able to post pictures with each one of my entries, and everyone can recieve an e-mail when I have updated without having to just check and see. I will be able to recieve e-mails everytime someone leaves a comment on her site which is way cool!!! Teresa has already set the blog up and she is copying my posts to the site until I fell comfortable enough with time to learn how, which I hope is very soon. She has even posted some pictures of Alicia during her transplant, I will post the link at the end of this message so everyone can check it out and start checking the updates there. I will post more during the day since it is so much easier.
Alicia is starting to stir, we went to sleep very early last night ( or at least i did, Alicia has been asleep for days) so hopefully she is feeling a little better today. Please do not forget to check out Alicia's new blog and leave a comment so I will know everyone is checking there so I can stop posting here. the link is,
www.aliciaslifewithfa.blogspot.com
Mee-Ma
Saturday, June 28, 2008 6:15 AM CDT
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
Friday, June 27, 2008 6:19 AM CDT
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
Thursday, June 26, 2008 9:33 AM CDT
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
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
Tuesday, June 24, 2008 9:27 AM CDT
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
Monday, June 23, 2008 7:13 AM CDT
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
Monday, June 23, 2008 7:13 AM CDT
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
Sunday, June 22, 2008 8:44 AM CDT
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
Saturday, June 21, 2008 5:50 AM CDT
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
Friday, June 20, 2008 5:43 AM CDT
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
Thursday, June 19, 2008 9:51 AM CDT
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
Wednesday, June 18, 2008 5:50 AM CDT
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
Tuesday, June 17, 2008 4:03 PM CDT
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
Monday, June 16, 2008 11:50 AM CDT
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
Sunday, June 15, 2008 11:11 AM CDT
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
Saturday, June 14, 2008 12:17 AM CDT
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!!!!!!!
Friday, June 13, 2008 10:10 AM CDT
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
Friday, June 13, 2008 8:39 AM CDT
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
Thursday, June 12, 2008 7:08 AM CDT
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
Tuesday, June 10, 2008 8:47 AM CDT
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
Tuesday, June 3, 2008 10:31 PM CDT
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
Saturday, May 31, 2008 9:13 AM CDT
YESTERDAY WAS SUCH A BUSY DAY. I AM SORRRY FOR NOT UPDATING ON HOW ALICIA DONE WITH THE PLACEMENT OF HER CENTRAL LINE.
SHE DID VERY WELL. WE ARRIVED AT THE HOSPITAL AT 7:30AM BUT SHE DID NOT RECIEVE HER PLATELETS UNTIL 10:15AM. THEY WAITED FOR 20 MINUTES AND DID A CBC AND HER PLATELETS SHOT UP TO 215,000. I WAS LIKE "O MY LORD!!!!!" THAT WAS THE HIGHEST ALICIA'S PLATELETS HAD EVER BEEN IN HER WHOLE ENTIRE LIFE. HER HB DID GO DOWN TO 8.9 BUT THAT HAD TO OF BEEN FROM THE MILLIONS OF TUBES OF BLOOD THEY HAVE TAKEN FROM HER SINCE WE HAVE GOTTEN HERE.
WE DID ALL THE PAPER WORK FOR THE SURGERY AND OFF ME AND ALICIA WENT TOWRARDS THE OR. MY HEART STARTED BEATING SO FAST I THOUGHT IT WAS GOING TO JUMP OUT OF MY CHEST. SINCE ALICIA ALREADY HAD AN IV THEY WERE ABLE TO PUT HER TO SLEEP WITH MEDICATION THROUGH THERE, A NURSE TOLDD ALICIA NITE-NITE AND ALICIA TOLD HER NO, THEN HER HEAD WENT BACKWARDS AND SHE WAS IN LA-LA LAND AND I STARTED BAWLING LIKE A BABY. THANK GOD TINA, JACY AND KEITH WERE THERE OR I PROBABLY WOULD OF LOST IT BUT I SHOOK IT OFF AND WENT TO WAITING FOR MY BABY TO COME OUT OF SURGERY.
WHILE WE WERE WAITING A VERY NICE LADY FROM HOME HEALTH CARE CAME TO THE WAITING AREA AND WENT OVER ALOT OF INFORMATION ON HER CENTRAL LINE AND WHAT I WILL NEED TO DO TO TAKE CARE OF IT DAILY. I WAS TRYING MY HARDEST TO LISTEN TO HER AN PAY ATTENTION BUT MY MIND WAS IN THE OR WITH ALICIA. I DID PICK UP ON THE IMPORTANT PARTS BUT I AM SO HAPPY THERE WILL BE A NURSE COMING THIS MORNING TO SHOW ME AND HELP ME CLEAN IT AND FLUSH IT FOR THE FIRST TIME. SHE JUST CALLED AND WILL BE HERE ING THIRTY MINUTES.
I HOPE ALICIA IS NICER TO THER THAN SHE WAS TO THE NURSES IN THE RECOVERY ROOM. WHEN THEY HAD CAME AND GOT ME TO GO BACK WITH ALICIA WHILE I WAS WALKING BACK ALL I COULD HEAR WAS ALICIA YELLING AT SOMEONE TO LEAVE HER ALONE AND DON'T TOUCH HER. WHEN SHE SAW ME SHE JUMPED RIGHT IN MY ARMS. I FEALT SO SORRY FOR THAT NURSE BUT I AM SURE SHE IS USED TO IT WHEN CHILDREN JUST WAKE UP THEY ARE VERY SCARED.
EVERYTHING WENT WELL DURING THE SURGERY. THEY DOCTOR WHO PLACED THE LINE TOLD ME THAT SHE HAD TO PUT IT IN HER JUGULAR VEIN IN HER NECK BECAUSE OF THEY WAY WHOULDERS AND NECK WAS VERY SMALL AND CRAMMED TOGETHER AND SHE DID NOT WANT TO HAVE ANY RISKS. SO ALICIA HAS A LITTLE CUT ON HER NECK AS WELL. TINA TOOK PICTURES OF HER CENTRAL LINE AND SENT THEM TO ERIKA, SHE HAD A HARD TIME WITH IT AT FIRST BUT AFTER I EXPLAINED WHY AND HOW IT WOULD WORK SHE IS OK WITH IT.
WHEN WE GOT BACK TO TINA'S ALICIA SLEPT ALOT. WE WENT WITH TINA AND KEITH TO TAKE THE GIRLS TO THEIR PROM AND ALICIA SLEPT THE WHOLE WAY. THE GIRLS LOOKED SOOOOO BEAUTIFUL. AND JACY EVEN WON "PROM QUEEN". JO WON "THE MOST GLAMOROUS DRESS OF 2008" SO NEEDLESS TO SAY YESTERDAY WAS A VERY TEARY DAY HERE AT TINA'S HOUSE.
ALICIA STARTED FEELING BETTER AFTER WE ATE, AND YES SHE IS ALREADY BACK TO HER LITTLE USUAL SELF.
NEST WEEK IS ANOTHER BUSY WEEK AND I WILL UPDATE MORE THAN. THANK YOU TO EVERYONE WHO CARES FOR ALICIA EVERYONE'S SUPPORT MEANS ALOT. I KNOW I MENTION THAT ALOT BUT IT IS SO TRUE AND THANK YOU AGAIN SO MUCH.
MEE-MA
Thursday, May 29, 2008 8:44 PM CDT
TODAY WE HAD A GOOD DAY ( NO HOSPITAL ) I TUCKED ALICIA IN EARLY TONIGHT, SHE HAS A LONG DAY AHEAD OF HER TOMORROW. WE HAVE TO BE AT THE HOSPITAL BY 7 AM. SHE WILL RECIEVE PLATELETS FOR THE VERY FIRST TIME EVER. THEN AT 1PM SHE WILL HAVE HER CENTRAL LINE PUT IT. I AM VERY NERVOUS ABOUT THAT. I THINK TOMORROW WILL BE THE REALITY CHECK I HAVE KNOWN IS COMING. I KNOW THAT JUST SEEING THAT LINE HANGING OUT OF HER WILL BE THE SLAP IN MY FACE THAT SAYS "IT IS REALLY TIME". I KEEP FEELING MY HEART BEATING VERY FAST AT TIMES TODAY AND THEN MY MIND KEEPS GOING IN CIRCLES FROM THE BEGGINING TO AN END THAT I HAVE NO IDEA WHAT IS ALL IN BETWEEN. A GOOD FRIEND OF MINE TOLD ME JUST YESTERDAY THAT IT IS SO MUCH EASIER TO JUST TAKE ONE DAY AT A TIME AND HANDLE WHAT IS ON MY PLATE FOR THAT DAY AND WORRY ABOUT THE NEXT DAY WHEN IT GETS HERE.
YESTERDAY WENT FARELY WELL. SHE SEEN THE DENTIST A HE GACE HER A "ALL CLEAR" HE SAID HER TEETH LOOKS GREAT AND NO CAVITIES AT ALL. HE SAID HER PERMANENT TEETH ARE STARTING TO COME IN AND IT LOOKS LIKE SHE WILL BE LOOSING ONE OF HER BOTTOM FRONT TEETH VERY SOON. (I WILL PROBABLY BAWL THAT DAY ALSO. ) AFTER THAT SHE HAD ABOUT A THOUSAND TUBES OF BLOOD DRAWN. THEY TOOK SO MUCH BLOOD FROM HER SO LITTLE BODY. THEY TOOK SO MUCH BLOOD THAT THEY HAD TO USE BOTH ARMS. ALICIA WAS SUCH A BIG GIRL THOUGH. SHE DIDN'T EVEN CRY ONE TIME. WHE WAS SCARED AND KEPT SAYING NO OWIE, BUT THIS TIME I HAD TO TELL HER THAT SHE WAS GETTING AN OWIE. SHE DID REALLY GOOD THOUGH. AFTER HER BLOOD DRAW WE WENT AND SEEN THE DOCTOR WHERE SHE WILL BE GETTING HER RADIATION ON THE 18TH. HE WENT OVER HOW THE RADIATION WILL HAPPEN AND THEN THEY DID A CAT SCAN TO MEASUERE HER LUNGS AND OTHER ORGANS. I DID NOT GET TO GO IN THE ROOM WITH HER DURING THIS TEST BUT THEY SAID SHE DID VERY WELL, AND SHE EVEN GOT A BAG OF M AND M'S (THEY SAID THEY BRIBED HER SO SHE WOULD BE STILL. ) BUT SINCE ALICIA DOES NOT EAT ALOT OF SWEETS, MEE-MA HELPED HER EAT THEM, :)
WELL SEVEN THIRTY COMES EARLY (ACTUALLY SIX THIRTY IS WHEN WE WAKE UP ) SO I WILL LET EVERYONE KNOWS HOW HER SURGERY GOES. I SOOOO APPRICIATE EVERYONE LEAVING MESSAGES IN HER GUESTBOOK. THE SUPPORT IS SO IMPORTANT TO BE ABLE TO GET THROUGH THIS.
MEE-MA
Tuesday, May 27, 2008 7:57 PM CDT
TODAY WENT PRETTY GOOD. THIS MORNING ALICIA HAD AN EKG ASD ECHO DONE ON HER HEART, I DO NOT KNOW ANY OF THE RESULTS YET BUT I THINK HER HEART IS FINE.
WE ALSO HAD CONSULTS WITH THE FINANCIAL ADVISOR, ANGELA, THE SOCIAL WORKER, KARI, AND GOT A TOUR OF THE BMT FLOOR.
THANKS SOOOOOOOO MUCH TO JACY, SHE CAME ALONG AND WATCHED ALICIA WHILE I TALKED TO THE PEOPLE, NEEDLESS TO SAY WHEN WE GOT BACK TO THE HOUSE NO ONE SEEN JACY FOR A LONG TIME. I AM SURE SHE HAD QUITE A HEADACHE. ALICIA IS UPSTAIRS WITH JACY NOW THOUGH BUT I CAN NOT HEAR HER SO MAYBE SHE IS ACTUALLY CALMED DOWN A LITTLE.
WHEN WE GOT THE TOUR OF THE BMT WARD ALICIA WAS RIDING ALL OVER THE HALLS ON A LITTLE DORA BIKE, SHE WAS RUNNING INTO EVERYTHING AND EVERYONE, THE NURSE'S DO NOT EVEN KNOW WHAT IS ABOUT TO COME THEIR WAY. LOL!!!!!!!
TOMORROW WE HAVE TO GO IN EARLY TO GET CBC'S, THEY WANT TO SEE WHAT HER PLATELET COUNT IS BEFORE FRIDAY WHEN SHE GETS HER CENTRAL LINE IN. THEN SHE WILL SEE DENTAL AND DR BRENNAN FOR MEASUREMENTS (WHAT EVER THAT IS)
I ACTUALLY FEEL LIKE I MIGHT BE ABLE TO GET A LITTLE SLEEP TONIGHT (I HOPE) I AM SOOO TIRED, LAST NIGHT I BARELY SLEPT, BUT I THINK THAT WAS JUST BECAUSE OF KNOWING TODAY WAS THE FIRST DAY OF THE TRANSPLANT STAGE AND I AM STILL SOOO SCARED BUT I FEEL A LITTLE BETTER NOW THAT I ALSO HAVE THAT BEHIND ME.
THANK YOU SO MUCH TO EVERYONE WHO IS PRAYING FOR ALICIA AND KEEPING UP ON HER. THIS WOULD BE TOTALLY IMPOSSABLE FOR ME TO GET THROUGH WITHOUT THE SUPPORT OF ALL OF YOU. THANK YOU SO MUCH TERESA FOR YOUR TRIBUTE TO ALICIA ON EMMA'S BLOG. I BAWLED LIKE A BABY WHEN I WAS READING IT BUT IT MEANT SO MUCH TO ME. AND THANK YOU VERY MUCH TINA FOR MAKING ME FEEL SO WELCOME IN YOUR HOME AND HELPING ME COPE WITH ALL OF THESE APPT'S AND THANK YOU SO MUCH FOR EVERYONE WHO IS ALSO DEALING WITH FA, TO TAKE TIME AND GIVE YOUR SUPPORT TO ALICIA AND I MEAN SOOOO MUCH.
MY GRANDSON TURNED ONE WEEK OLD TODAY!!! ERIKA AND ALICIA HAVE TALKED SO MUCH SINCE WE HAVE BEEN HERE. LAST NIGHT SHE HAD TO GO THROUGH THE WHOLE FAMILY, SHE HAD TO TALK TO DADDY AND ALL OF HER BROTHERS AND SISTERS, IT MADE ALICIA SOOOO HAPPY TO TALK TO THEM.
I WILL UPDATE LATER. ALICIA IS COMING DOWN THE STAIRS WANTING A DRINK.
MEE-MA MICHELLE
Monday, May 26, 2008 11:36 PM CDT
HELLO EVERYONE... I AM HAVING TROUBLE SLEEPING TONIGHT SO I DECIDED TO UPDATE ALICIA'S SITE.
WE MADE IT TO CINCINNATI YESTERDAY AFTERNOON. LAST NIGHT WAS THE FIRST NIGHT I ACTUALLY GOT A GOOD NIGHTS REST IN OVER A MONTH. I BELIEVE IT WAS BECAUSE I AM ACTUALLY HERE NOW SO ALL MY WORRY BACK HOME IS NO LONGER THERE. I DO WORRY ABOUT ERIKA ALOT THOUGH, SHE HAS HAD A HARD TIME WITH ALICIA LEAVING BUT THEY HAVE TALKED THREE OR FOUR TIMES TODAY SO I BELIEVE IT IS GETTING BETTER.
TINA HAS MADE US FEEL SO AT HOME!!!! EVEN ALICIA'S LITTLE BAD BUTT!!! SHE WAS SO HAPPY TO SEE JO AND JACY. AND KEITH IS BY ALL HER FAVORITE. HE TOOK HER ON HER VERY FIRST MOTOR CYCLE RIDE TODAY. SHE LOVED IT SOOOO MUCH, SHE KEPT ASKING TO RIDE MORE ALL NIGHT.
TOMORROW ALL THE MADNESS STARTS. THAT IS PROBABLY THE MOST REASON I AM HAVING TROUBLE FALLING ASLEEP. ALICIA IS RIGHT HERE SNORING AWAY THOUGH. THIS IS THE ONLY QUIET TIME I HAVE RIGHT NOW BUT THAT IS OK. I WOULD RATHER HER BE LOUD AND HER LITTLE HYPER SELF THAN SICK AND QUIET ANY DAY OF THE WEEK.
TOMORROW SHE HAS APPT'S WITH THE HEART DOCTOR AND WE ALSO HAVE ALOT OF CONSULTS WITH DIFFERENT DOCTORS AND SOCIAL WORKERS AND FINANCIAL ADVISORS. WE WILL PROBABLY BE AT THE HOSPITAL MOST OF THE DAY. WEDNESDAY SHE WILL SEE DENTAL AND SOMETHING ABOUT MEASUREMENTS WHICH I THINK IS OF HER ORGANS ( I FEEL VERY DUMB SOMETIMES BUT I AM LEARNING) THURSDAY IS THE ONLY DAY SHE DOES NOT HAVE ANYTHING THIS WEEK YET AND THEN FRIDAY SHE WILL HAVE HER CENTRAL LINE PUT IN AND A BIOPSY DONE. SHE ALSO HAS ALOT SET UP FOR NEXT WEEK LIKE CT'S AND HER LIVER TESTS AND OTHERS BUT NOT FOR SURE IF ANYTHING ELSE WILL COME UP BEFORE WE ARE ADMITTED ON THE 12TH OF JUNE AND CHEMO STARTING ONT THE 13TH.
HOPEFULLY THIS WILL ALL BE OVER SOON. I JUST WANT MY LITTLE BEST FRIEND TO GET BETTER!!!!!!
GOTTA GO THE TEARS ARE RUNNING, I WILL UPDATE WHEN I GET SOME RESULTS FROM THE MILLION TESTS THAT ARE ABOUT TO BE DONE ON HER.
MEE-MA
Friday, May 23, 2008 9:34 PM CDT
TODAY IS ONE OF THOSE DAYS I KEEP SAYING I WILL NEVER FORGET. IT HAS BEEN A VERY GOOD DAY BUT I WAS ONCE AGAIN ACTING AND NOT TRYING TO CRY SO EVERYONE CAN SEE HOW I AM REALLY FEELING. ALICIA IS HAVING THE TIME OF HER LIFE. I THINK SHE KNOWS SOMETHING IS GOING ON BECAUSE SHE IS NOT GETTING IN ANY TROUBLE, WHICH IS VERY UNUSUAL FOR ALICIA AND ANYONE THAT HAS EVER MET HER KNOWS WHY I SAY IT IS UNUSUAL FOR ALICIA NOT TO GET IN TROUBLE.
IT HAS BEEN OVER A WEEK SINCE I UPDATED AND IT HAS SEEMED LIKE IT HAS BEEN A LOT LONGER. SO MUCH HAS HAPPENED.
I MOVED OUT OF MY HOUSE LAST WEEKEND. AND I HAVE BEEN STAYING AT ERIKA'S. I THINK I MIGHT HAVE ALREADY MENTIONED THAT I WAS???? I FEEL LIKE THE MONEY I WAS GOING TO PAY FOR RENT CAN BE USED BEST IN DIFFERENT WAYS. AND ERIKA DID NOT HAVE A COMPUTER SO IT TOOK FOUR DAYS TO GET EVERYTHING TRANSFERED FROM MY HOUSE TO HERS.
I AM OFFICALLY ANOTHER MEE-MA. JAYSHON WAS BORN TUESDAY MORNING ON THE 20TH OF MAY. HE IS SOOOO LITTLE, HE WEIGHED 6LBS 3OZ. I THINK HE LOOKS SO MUCH LIKE ERIKA DID WHEN SHE WAS A BABY, I ALSO SEE ALOT OF ALICIA IN HIM. HE IS SOOOO CUTE!!!!!!!
I HAVE BEEN TAKING CARE OF ALICIA AND LIL ANSHON ALL WEEK. ANSHON HAS BEEN STAYING AT THE HOSPITAL WITH ERIKA EVERY NIGHT, SO ME AND LIL ANSHON GOT ALOT OF MEE-MA AND ANSHON TIME!!!! I AM GOING TO MISS HIM SOOOOO MUCH, HERE COMES THE TEARS AGAIN,,,,, I JUST PRAY THAT WITH HIM BEING SO YOUNG THAT HE DOESN'T FORGET!!!!! HE SAID MEE-MA LAST WEEK AND IT IS SO HARD TO FORGET MEE-MA SO I KNOW HE WILL NOT FORGET. I JUST WISH I HAD A LITTLE MORE TIME WITH JAYSHON, TWO DAYS IS JUST NOT ENOUGH.
I FEEL LIKE I AM GOING TO LOOSE IT BUT I KNOW THAT I CAN'T SO I JUST KEEP SMILING AND SAYING "ITS GOING TO BE OK" BUT I JUST WICH I KNEW THAT I WAS SAYING THE TRUTH, LORD GIVE ME STRENGHTH!!!!!!!
TOMMORROW WE ARE HAVING A LITTLE PARTY FOR ALICIA. I KEPT FINDING MYSELF GETTING MAD (AND IT MADE ERIKA EVEN MORE MAD)EVERYONE KEPT CALLING IT A GOING AWAY PARTY FOR ALICIA BUT ERIKA AND I KEPT TELLING THEM SHE IS NOT GOING AWAY, SHE WILL BE BACK VERY SOON,,,,,,, OK HERE COMES THE TEARS AGAIN...... NOW EVERYONE IS SAYING WE ARE HAVING A MEMORIAL "HAPPY DAY" PARTY FOR ALICA. (NOW THAT WAS EVEN WORSE FOR ME BUT I JUST SAID OK COOL) I AM GOING TO PUT ON MY MASK AGAIN TOMMORROW AND HOPEFULLY IT WILL BE OVER SOON!!!!
OUR PLANE LEAVES AT 6:30 SUNDAY MORNING, WE ARE PLANNING ON STAYING WITH MY TWIN SISTER DENISE TOMMORROW NIGHT SO SHE CAN HAVE A LITTLE OF TIME WITH ALICIA ALONE AFTER OUR "PARTY" FOR ALICIA. DENISE IS HAVING ALOT OF MEDICAL PROBLEMS HERSELF RIGHT NOW, SHE HAS NOT SEEN ALICA IN OVER A WEEK CAUSE OF THEM ( SHE IS PASSING A STONE, SORRY DENISE) IT STARTED LAST WEEK SO SHE HAD SURGERY MONDAY TO REMOVE IT SO SHE COULD HAVE TIME WITH ALICIA BUT THE SURGERY BROUGHT ON TWO MORE. ( I FEEL SO SORRY FOR HER ) SHE SAID EVEN THIS BOULDER COULDN'T KEEP HER FROM ALICIA TOMMORROW. ( I LOVE HER SOOO MUCH )
I PROBABLY WILL NOT BE ABLE TO UPDATE TIL I GET TO CINCINNATI SUNDAY AT TINA'S, PLEASE EVERYONE SAY AN EXTRA PRAYER TONIGHT AND TOMMORROW AND EVERY DAY AFTER FOR MY BEST FRIEND.
GOOD NIGHT ALICIA DENISE REED. MEE-MA LOVES YOU SO VERY MUCH!!!!
Sunday, May 11, 2008 10:12 PM CDT
HAPPY MOTHERS DAY TO ALL FA MOTHERS, GRANDMOTHERS, AND EVERY OTHER MOTHER OUT THERE.
TODAY WAS A BAD DAY BUT IN A VERY GOOD WAY. BUT IT IS A DAY THAT I WILL ALWAYS REMEMBER EVERY MOTHERS DAY THAT THE LORD GIVES US TOGETHER FROM NOW ON.
WE HAD A REALLY GOOD TIME, EVERYONE FINALLY GOT TO THE PARK AROUND THREE, ( WAITING ON ERIKA, I THINK SHE WILL BE LATE TO HER OWN WEDDING.) I THINK WE HAD THE BIGGEST PARTY OUT THERE. MY WHOLE FAMILY WAS THERE, MY MOM GRANDMA, ALL MY SISTERS, (EXCEPT ONE BUT THAT IS A LONG STORY) ALL OF THEIR KIDS AND THIER KIDS, ALOT OF SOME OF MY VERY GOOD FRIENDS SURPRISED ME AND THIER FAMILY'S. I HAD A VERY HARD TIME PUTTING UP THE FRONT THAT I WAS HAPPY AND HAVING A GOOD TIME, I HAD MANY TEARS FALL BUT I HAD ON MY SUNGLASSES SO NOBODY EVEN KNEW. I JUST KEPT LOOKING AROUND AT EVERYONE'S FAMILY AND ALL THE KIDS PLAYING AND KEPT THINKING ABOUT SO MUCH THAT WE WILL MISS THIS SUMMER. BUT I KEPT PUTTING ALL THE HAPPY THOUGHTS IN MY HEAD OF ALL THE TIMES TO COME THAT WE WILL BE WITH OUR FAMILY AS SOON AS ALICIA GETS HER NEW CHANCE AT LIFE!!!
I CRIED EVERY TIME I WATCHED ERIKA SWING ALICIA OR WHEN ALICIA WAS CHASING ERIKA'S NINE MINTH PREGNANT HUGE SELF. AND I PLAYED WITH LITTLE ANSHON AND THOUGHT OF EVERYTHING I WAS GOING TO MISS HIM DO FOR THE FIRST TIME AND FOR ALL OF THE TIME I WILL NOT BE ABLE TO GET BACK THAT I AM GOING TO MISS OF BOTH OF MY GRANDSONS LIFE.
BUT I SMILED AND WAS HAPPY WHEN I THOUGHT ABOUT ALL OF THE TIMES TAHT ARE STILL TO COME THAT I WILL NOT MISS, SOON I WILL BE ABLE TO JUST ENJOY AND SPEND TIME WITH ALL THREE OF MY GRANDCHILDREN WITHOUT THE EVERY DAY THOUGHT OF WHAT ALICIA FACES. IT WILL SOON BE BEHIND US AND CAN NOT WAIT TIL NEXT MOTHERS DAY!!!
ERIKA BOUGHT ME A BOTTLE OF MY FAVORITE PERFUME "COOL WATER" AND ALICIA NEVER ACTED UP ONE TIME TODAY. I DID NOT ONE TIME HAVE TO GET ON TO HER ( AND EVERYONE THAT KNOWS HER UNDERSTANDS WHAT I MEAN :)
I HOPE EVERY MOTHER HAD A GOOD MOTHERS DAY JUST LIKE I DID. LORD KNOWS IT TAKES A STRONG MOTHER (AND MEE-MA) TO GET THROUGH EACH DAY WITH DEALING WITH FA.
MEE-MA MICHELLE
Saturday, May 10, 2008 10:23 PM CDT
TOMORROW IS MOTHERS DAY. I KNOW THIS YEAR WILL BE A SPECIAL MOTHERS DAY FOR OUR FAMILY. WE ARE HAVING A HUGE BBQ AT OUR COUNTY PARK, THERE WILL BE FIVE GENERATIONS OF OUR FAMILY THERE, MY GRANDMA LOOMIS, WHICH IS MY MOTHERS MOM, MY MOM, MYSELF,ERIKA, AND ALICIA. ALL OF THE REST OF MY FAMILY WILL BE THERE ALSO, MY SISTERS THEIR CHILDREN, AND MY OLDEST SISTER HAS ONE GRANDCHILD ALSO ( NO WHERE NEAR MY 3 (IN TEN DAYS). ALOT OF OUR FRIENDS AND THEIR KIDS WILL BE THERE ALSO, I AM REALLY LOOKING FORWARD TO IT. THIS WILL BE THE ONLY BBQ, HOLIDAY, AND FAMILY GATHERING ALICIA AND I WILL BE ABLE TO BE AT FOR THE WHOLE SUMMER. I REALLY WANT THIS TO BE A GOOD MOTHERS DAY FOR ERIKA AND ALICIA.
I AM ALSO VERY GREATFUL THAT I WILL BE ABLE TO BE HERE FOR MY GRANDSONS BIRTH, HE WILL BE HERE IN TEN DAYS!!!! WE HAD A BABY SHOWER FOR ERIKA TODAY AT MY TWIN SISTERS DENISE'S HOUSE. I HAD MENTIONED IN MY LAST ENTRY HOW WONDERFUL DENISE HAS BEEN SINCE WE FOUND OUT THAT ALICIA IS GOING TO TRANSPLANT, AND THIS IS ANOTHER REASON WHY I AM SO THANKFUL FOR HAVING HER AS MY SISTER. I SPENT THE NIGHT AT DENISE'S HOUSE LAST NIGHT SO I COULD GET UP AND HELP HER DECORATE FOR THE SHOWER. WE TALKED ALOT LAST NIGHT SHE HAS BEEN SUCH AN AWESOME SUPPORT FOR ME. ERIKA GOT ALOT OF NICE STUFF FOR THE BABY, DENISE BOUGHT HER A BASSINET AND FIVE HUGE PACKS OF DIAPERS, SHE ALSO GOT ALOT OF OTHER THINGS THAT SHE WILL NEED FOR JAYSHON ( THANKS DIANNE FOR THE CUTE POOH STUFF YOU SENT FOR JAYSHON). SHE STILL HAS ALL OF ANSHON'S CLOTHES SO SHE IS ALL READY FOR THE BIG DAY IN 10 DAYS. I THINK ANSHON JR IS GOING TO BE VERY JELOUS, BUT I THOUGHT ALICIA WOULD BE TO WHEN ANSHON WAS BORN BUT SHE HAS DONE VERY WELL WITH IT. I CAN NOT WAIT TIL WE ARE BACK FROM TRANSPLANT AND ALL THREE OF MY GRANDCHILDREN WILL BE TOGETHER.
WELL IT IS GETTING SO CLOSE TO THE DAY ALICIA AND I WILL LEAVE FOR CINCINNATI. WE LEAVE TWO WEEKS FROM TODAY. I RECIEVED THE TRANSPLANT BINDER AND TENTATIVE SCHEDULE TODAY FROM CINCINNATI AND IT SAYS THAT HER TRANSPLANT WILL TAKE PLACE ON JUNE 19TH AS LONG AS EVERYTHING GOES WELL WITH THE RESULTS FROM HER PRE-WOORKUP. ALL THE TESTING IS STILL SET TO BEGIN THE 27TH, IF ALL RESULTS ARE OK SHE WILL BE ADMITTED TO THE BMT FLOOR ON JUNE 12TH AND START CHEMO THE NEXT DAY. I HOPE AFTER I READ THE BINDER I WILL UNDERSTAND A LITTLE MORE OF WHAT IS GOING TO HAPPEN. ( AND WITH THE HELP OF TINA I AM SURE I WILL (THANKS GIRL)
ALICIA IS SPENDING THE WEEKEND WITH HER DAD. HE CALLED THIS MORNING AND I TALKED TO HER AND IT SOUNDED LIKE SHE WAS HAVING FUN, SHE TOLD ME SHE WAS AT THE PARK PLAYING. I AM GLAD HER DAD IS SPENDING TIME WITH HER BEFORE SHE LEAVES.I CAN NOT WAIT UNTIL THE MORNING THOUGH SO I CAN GO GET HER, I AM USED TO SEEING HER EVERY DAY AND TODAY I DID NOT GET ANY KISSES OR HUGS.
PLEASE KEEP ALICIA IN YOUR PRAYERS AND ALL THE OTHER CHILDREN WITH FA.
MEE-MA MICHELLE
Thursday, May 8, 2008 9:29 PM CDT
THE DAYS JUST SEEM TO BE FLYING BY!!! WE ONLY HAVE TWO WEEKS UNTIL WE LEAVE FOR CINCINNATI. I HAVE BEEN SO BUSY TRYING TO GET EVERYTHING IN ORDER BEFORE WE LEAVE. I CAN SAY THOUGH THAT WITH EACH DAY THAT PASSES IT IS GETTING EASIER FOR MYSELF. I HAVE GAINED ALOT OF STRENGHTH IN THE LAST TWO WEEKS AND I KNOW THE LORD IS HOLDING ALICIA'S AND HE WILL SEE HER THROUGH THIS.
I NEVER REALIZED HOW MANY PEOPLE CARE ABOUT US, EVERYONE HAS BEEN SO GREAT THE PAST TWO WEEKS. MY TWIN SISTER, DENISE HAS BEEN A VERY BIG SUPPORT FOR ME. SHE HAS HELPED ME IN SO MANY WAYS WITH COPING WITH WHAT IS ABOUT TO HAPPEN. DENISE AND ALICIA ARE VERY CLOSE ALSO, ALICIA LOVES HER ALOT (ALMOST AS MUCH AS SHE LOVES ME BUT NOT QUITE:) I AM THANKFUL THAT I HAVE HER AS MY SISTER. I KNOW SHE WILL BE IN CINCINNATI ALOT WITH US. SHE HAS TOLD ME SHE WILL BE THERE EVERY OTHER WEEKEND AND MORE IF I NEED HER. SHE IS A VERY SPECIAL PERSON.
EVERYTHING IS STILL PRETTY MUCH STILL PLANNED THE SAME AS MY LAST UPDATE, ERIKA IS HAVING THE BABY ON THE 20TH AND HOPEFULLY SHE WILL RECOVER FAST FROM HER C-SECTION AND BE HOME FOR AT LEAST ONE DAY BEFORE ALICIA AND I LEAVE ON THE 24TH. ERIKA PLANS TO BE IN CINCINNATI 2 WEEKS AFTER SHE COMES HOME, PLEASE PRAY HER RECOVERY GOES WELL. ANSHON WILL STAY AT HOME WITH THE TWO BOYS, HE IS SUCH AN AWESOME FATHER. THEY ARE STILL STARTING THE PRE-TRANSPLANT THINGS ON THE 27TH, SHE IS GOING TO GET HER CENTRAL LINE IN ON FRIDAY THE 30TH. THEN WE WILL HAVE ONE WEEK BETWEEN AND TRANSPLANT WILL TAKE PLACE AROND THE 9TH OF JUNE NOW. I JUST PRAY EVERYTHING GOES WELL FOR ALICIA, SHE IS VERY DEAR TO ME, SHE IS MY HEART. I HAVE NEVER LOVED ANYONE BESIDES THE LORD AS MUCH AS I LOVE HER.
I WANT TO THANK EVERYONE FOR ALL OF YOUR SUPPORT, TINA YOU ARE A VERY DEAR FRIEND I AM SO GLAD I HAVE YOU BESIDE ME, AND DIANNE YOU ARE THE BEST!! I AMS SO GLAD TO HAVE YOU AS A FRIEND.
I GOT TO END THIS QUICK ALICIA IS JUMPING ON THE BED, ANYONE WHO HAS MET HER KNOW SHE IS A HANDFUL. I CAN NOT WAIT TIL ALL OF THIS IS OVER SO I CAN ENJOY MY LITTLE BEST FRIEND.
MEE-MA MICHELLE
Sunday, April 27, 2008 5:16 PM CDT
THE PAST THREE DAYS HAVE BEEN HARD. BUT TODAY HAS BEEN BETTER AND I KNOW TOMMORROW IS ALMOST HERE. I KNOW NOW THAT I WLL BE ABLE TO OVERCOME ANY OBSTACLE, AND I FEEL I CAN BE STRONG FOR ALICIA.
ERIKA HAS BEEN HAVING A HARD DAY TODAY. IT HURTS ME SO BAD TO SEE ALL THE WORRY ON HER FACE. SHE IS SPENDING ALOT OF TIME WITH ALICIA THIS WEEKEND, THEY LOVE EACHOTHER SO MUCH.
TOMORROW IS GOING TO BE A BUSY DAY. I WANT TO BR ABLE TO GET ANY OF THESE LEGAL ISSUE'S WE ARE HAVING BEHIND US ABOUT ME BEING ABLE TO MAKE DECISIONS ON ALICIA'S BEHALF DURING TRANSPLANT. I AM SURE I WLL BE ON THE PHONE ALOT WITH KARI TOMORROW FROM CINCINNATI.
ANOTHER WORRY ON MY MIND ALOT IS MAKING SURE ERIKA CAN GET THERE AS OFTEN AS SHE CAN. I CHECKED ONLINE AND IT IS $550 FOR A ROUND TRIP TICKET TO CINCINNATI, BUT I FIND OUT TOMORROW ALSO IF I HAVE CONQUERED THAT ISSUE AS WELL. I JUST WANT EVERY CONCERN PUT BEHIND ME SO I CAN FOCUS AND GETTING MYSELF STRON FOR ALICIA.
I KNOW SHE WILL NEED MY EVERY IOTA OF STRENGTH,COURAGE AND COMFORT TO GET THROUGH THIS, AND I MADE A PROMISE TO HER WHEN SHE WAS FIRST BORB THAT I WILL ALWAYS BE WITH HER AND NEVER LEAVE HER AND I PROMISE EVERY TIME SHE OPENS HER EYES SHE WILL SEE ME AND THERE WILL NOT BE A SECOND IN HER LIFE WHERE I WILL NOT BE THERE. SHE IS MY EVERYTHING.
SHE IS ASLEEP RIGHT NOW LAYING BESIDE ME. SHE LOOKS SO SMALL. SHE IS SOOOOOO BEAUTIFUL. I LOVE HER WITH ALL MY HEART.
MEE-MA MICHELLE
Thursday, April 24, 2008 8:38 PM CDT
WELL TODAY IS ONE I WILL REMEMBER FOR A LONG TIME (BUT HOPEFULLY NOT FOREVER).
THE CALL CAME TODAY THAT WE HAVE BEEN KNEW WOULD COME FOR OVER FIVE YEARS NOW. ALICIA IS GOING TO TRANSPLANT, WE HAD ANOTHER CBC DONE THIS MORNING AND DR DAVIES FEELS IT IS TIME TO MOVE TO TRANSPLANT.
SHE SAID ALICIA NEEDS TO BE THERE THE WEEK AFTER ERIKA HAS THE BABY. ERIKA IS ALREADY SCHELED FOR A C-SECTION ON MAY 19TH, SO THEY ARE LOOKING TO START HER PRE TRANSPLANT WORK UP THE WEEK OF THE 26TH, AND TRANSPLANT DIRRECTLY AFTER THE FIRST WEEK OF JUNE, SHE SAID SHE WOULD FEEL BETTER THAT WAY BECAUSE ALICIA HAS A PERFECT COD ALREADY.
I THOUGHT I HAD MYSELF READY FOR THAT CALL BUT I WAS WRONG. TODAY HAS BEEN A VERY HARD DAY FOR ME AND ERIKA. BUT TOMORROW IS ALMOST HERE AND IT IS A WHOLE DIFFERENT DAY AND I KNOW I HAVE TO PULL MYSELF TOGETHER.
SO MUCH HAS BEEN GOING THROUGH MY MIND, ERIKA WILL STILL BE IN THE HOSPITAL OR JUST HOME WHEN WE HAVE TO LEAVE, THE BABY WILL NOT EVEN BE A WEEK OLD. AND ERIKA WILL BE RECOVERING FROM A C-SECTION.
WE HAVE SO MUCH TO HANDLE AND ONLY THREE WEEKS TO DO IT. I HAVE NEVER BEEN SOOOOO SCARED IN MY LIFE.
PLEASE KEEP ALICIA IN YOUR PRAYERS, SHE IS MY VERY BEST FRIEND.
MEE-MA MICHELLE
Sunday, April 20, 2008 10:22 PM CDT
WE HAD A VERY GOOD WEEKEND, I SPENT ALOT OF TIME WITH MY TWIN SISTER, DENISE. SHE MADE ME SIT DOWN AND WATCH A NEW MOVIE THAT JUST CAME OUT CALLED TODD SWEENEY. I DID NOT LIKE IT TOO WELL BUT DENISE THOUGHT IT WAS A VERY GOOD MOVIE, TO MUCH SINGING FOR ME.
ALICIA HAD ANOTHER CBC DONE ON THURSDAY AND HER PLATELETS ARE DOWN TO 12,000 NOW. THIS HAS ME VERY WORRIED BUT AS EVERY KNOWS HER PLATELETS HAVE HAD ME WORRIED FOR A LONG TIME. DR DAVIES WANTS ANOTHER COUNT DONE IN ONE WEEK SO HERE I AM DOING THE WAITING AND WORRYING GAME AGAIN. I SO HOPE THEY GO BACK UP BUT IT HAS BEEN SO LONG SINCE I HAVE SEEN THAT. HER OTHER COUNTS HAVE DROPPED ALSO, HER HB IS AT 9.9 WHICH DROPPED A LITTLE MORE THAN USUAL WHICH HAS ME WORRIED ALSO. I WILL UPDATE ON HER COUNTS JUST AS SOON AS I GET THE RESULTS THIS THURSDAY.
SORRY I HAVE GOT ANY OF OUR PICTURES FROM DISNEY ON HERE YET, THE CD'S ARE AT CHURCH, WHICH I HAD TO MISS THIS SUNDAY SO I WILL PICK THEM UP THIS WEEK.
I WILL UPDATE AGAIN SOON
MEE-MA
Friday, April 11, 2008 11:49 AM CDT
WE HAD THE TIME OF OUR LIFE AT DISNEY WORLD!!!! ALICIA WAS SO EXCITED, SHE HAD THE BIGGEST SMILE ON HER FACE EVERY DAY, I SO WISH WE DID NOT HAVE TO COME BACK HOME AND ALICIA COULD GO TO DISNEY EVERY DAY OF HER LIFE.
BUT MY FEET ARE STILL KILLING ME!!!!!!!!!!!!!!!
THE FIRST DAY DIDN'T GO AS WELL AS WE THOUGHT IT WOULD, ERIKA BARELY MADE IT THROUGH HALF OF THE DAY WITH ALL THE WALKING AND BEING SO FAR ALONG IN HER PREGNACY. BUT WE FIXED THAT PROBLEM AND RENTED HER A MOTOR SCOOTER THE REST OF THE DAYS WE WERE THERE.
THE FIRST DAY WE WENT TO THE MAGIC KINGDOM, WHEN ALICIA SEEN THE CASTLE SHE STARTED JUMPING UP AND DOWN, AS SOON AS WE WENT THROUGH THE CASTLE MICKEY AND MINNIE WERE JUST ON THE OTHER SIDE AND ALICIA KEPT SAYING "LOOK MEE-MA TWO MICKEY MOUSE" IT TOOK US ALMOST THREE DAYS TO GET HER TO FINALLY UNDERSTAND THAT ONE WAS MINNIE MOUSE NOT MICKEY MOUSE.
THE FIRST RIDE SHE WANTED TO DO WAS THE DUMBO RIDE, ERIKA RODE IT WITH HER AND AFTER THE THIRD TIME WE FINALLY GOT HER TO MOVE ON TO SOMETHING DIFFERENT. SHE ALSO LOVED THE TEA CUPS, ERIKA WAS TAKING CARE OF LITTLE ANSHON SO I GOT THE PRIVLAGE OF RIDING THIS ONE WITH HER, THE TEA CUPS WERE EVEN HARDER TO PULL HER AWAY FROM, I HAD TO PROMISE WE WOULD COME BACK AND RIDE AGAIN AFTER THE FOURTH TIME OF RIDING IT. AFTER A COUPLE OF OTHER RIDES WE CAME UP TO THE LITTLE MERMAID, ALICIA WAS IN HEAVEN, SHE GOT TO HAVE A SPECIAL VISIT WITH HER SINCE SHE WAS WITH MAKE A WISH, IT WAS SO CUTE BECAUSE ALICIA KEPT ASKING HER TO GO SWIMMING. FINALLY AFTER ABOUT FIFTEEN MINUTES WITH ARIEL I HAD TO CONVINCE HER WE WOULD SEE HER AGIAN. BY THIS TIME IT HAD STARTED RAINING (WHICH IT DID ALOT OF WHILE WE WERE THERE) SO WE FOUND A DRY PLACE TO SIT AND REST AND WAIT FOR THE PARADE OF CHARACTERS. ALICIA ALSO LOVED THE PARADE, WHEN IT WAS OVER SHE KEPT SIGNING "MORE PLEASE" SO WE WENT BACK TO THE TEA CUPS SO SHE COULD RIDE AGAIN AS I HAD PROMISED HER. BY THIS TIME ERIKA WAS HAVING A VERY HARD TIME AND HAD EVEN TAKEN HER SHOES OFF SO WE TOOK ALICIA TO SEE A COUPLE OF THE 3-D SHOWS AND WENT TO MEET THE BIGGER KIDS AND ANSHON AND WENT BACK TO GIVE THE KIDS A WORLD VILLAGE FOR SOME MUCH NEEDED RELEAVE ON ERIKA'S FEET.
THE KID'S VILLAGE WAS AWESOME, THEY TREAT THE KID'S SO VERY WELL THERE!!!!! THE FIRST NIGHT WE WAS THERE WE HAD JUST MADE IT IN TIME FOR DINNER, THEN THEY WERE CELEBRATING CHRISTMAS IN THE CASTLE SO WE TOOK ALL THE KIDS TO SEE SANTA (IN APRIL) THEY ALL GOT A VERY NICE GIFT AND WE TOOK ALOT OF PICTURES THEN WENT TO THE ROOM TO GET SOME MUCH NEEDED REST.
THE 2ND DAY WE WENT TO EPCOT, WE RODE THE RIDE WHERE WE WENT IN THE BALL FIRST, ALICIA GOT SCARED IN THE BEGINNING BECAUSE IT WAS DARK, BUT BY THE TIME IT WAS OVER SHE WANTED TO DO IT AGAIN, I FINALLY DECIDED IF I KEPT LETTING HER RIDE EACH RIDE THREE OR FOUR TIMES THAT WE WOULD MISS ALOT SINCE THERE WAS SO MUCH TO SEE SO I TOLD HER ONLY TWO TIMES AND SHE WAS OK WITH THAT.
ERIKA DID SO MUCH BETTER WITH THE SCOOTER, SHE SAID SHE FUNNY RIDING IT BUT SHE DID NOT CARE BECAUSE SHE FELT BAD FOR HAVING TO STOP SO EARLY THE DAY BEFORE AND LOVED TO SEE ALICIA SO HAPPY.
ALICIA LOVED THE BUILDING WHERE ALOT OF THE CHARACTERS WERE, WE GOT TO GO STRAIGHT TO THE FRONT OF EACH LINE AND WE GOT PICTURES WITH ALL OF THEM, THIS WAS STILL THE 2ND DAY AND IT WAS BEFORE SHE UNDERSTOOD THAT THERE WERE NOT TWO MICKEY'S SO SHE KEPT CALLING MINNIE MICKEY AGAIN. AFTER WE TOOK PICTURES WE TOOK HER TO THE NEMO RIDE, (JUST IN TIME BEFORE IT STARTED RAINING AGAIN) WE HAD NO PROBLEM LETTING HER RIDE THIS ONE MORE THAN ONCE SINCE IT WAS INSIDE AND WE HAD TO WAIT FOR IT TO STOP RAINING.
AFTER THE RAIN SLOWED DOWN WE WENT TO THE HONEY I SHRANK THE AUDIENCE SHOW, ALICIA DID NOT LIKE THIS ONE TO WELL, SHE GOT SCARED WHEN THEY BLEW UP THE DOG SO SHE TOOK HER GLASSES OFF AND KEPT SAYING "DOG BITE" IT WAS SO CUTE WE ALL JUST LAUGHED AT HER.
WHEN IT FINALLY STOPPED RAINING WE ALL DECIDED TO GO BACK TO MAGIC KINGDOM TO SEE SOME OF WHAT WE MISSED THE DAY BEFORE WHEN ERIKA HAD TO STOP EARLY BUT BY THE TIME WE TOOK THE MONARAIL TO THE MAGIC KINGDOM IT STARTED RAINING AGIAN AND THE KIDS WERE SOAKED SO WE DECIDED TO GO BACK TO THE VILLAGE AND TRY AGAIN THE NEXT DAY.
WHEN WE GOT TO THE VILLAGE WE HAD DINNER AND STAYED IN THE ROOM SO THE KIDS COULD REST, ABOUT 9:15 THERE WAS A KNOCK ON THE DOOR AND IT WAS MRS MARY, THE MAYOR CLAYTONS WIFE, WHICH IS A SIX FOOT RABBIT, SHE HAD COME TO TUCK ALICIA INTO BED. ALICIA WAS SO HAPPY BUT SHE WAS NOT GOING FOR THE RABBIT MAKING HER GO TO BED, SHE TOLD MRS MARY FOR HER TO GO NIGHT NIGHT, SO ALICIA AND A SIX FOOT BUNNY BOTH GOT INTO BED, IT WAS SOOOO CUTE.
THE THIRD DAY WAS BY FAR ALICIA'S FAVORITE. WE WENT TO UNIVERSAL STUDIO'S AND THE FIRST CHARACTER SHE SEEN WAS DORA. I DID NOT EVEN HAVE A CHANCE TO LET THEM KNOW SHE WAS WITH MAKE A WISH SO SHE COULD GO TO THE FRONT BECAUSE ALICIA RAN STRAIGHT UP TO HER. I TOOK ALOT OF PICTURES, IT WAS SO HARD TO GET ALICIA TO LEAVE DORA, THE ONLY THING THAT SAVED ME WAS SPONGE BOB NEXT DOOR, WE TOOK PICTURES WITH SPONGE BOB AND THEN WNT ON THE JIMMY NEUTRON RIDE, (WHICH WAS A MISTAKE, ALICIA GOT A BIG BRUISE FROM THAT SHOW). NEXT WE WENT TO THE SHREK SHOW WHICH ALICIA LOVED, I THOUGHT SHE WOULD BE SCARED BECAUSE THIS ONE WAS ALSO 3-D BUT SHE LOVED IT AND KEPT HER GLASSES ON THROUGH THE WHOLE SHOW. AFTER THE SHOW WE WENT AND TOOK PICTURES WITH SHREK AND FIONA.
NEXT WAS THE TWISTER SET, ALICIA LOVED THAT ONE ALSO, I AM VERY SCARED OF STORMS BUT IT WAS NOT THAT BAD, ALICIA WAS NOT SCARED AT ALL. WE THEN CAME TO THE MUMMY WHICH IS A FAST AND SCARY ROLLER COASTER, I DECIDED TO HAVE ALICIA SIT THIS ONE OUT AND WENT TO GET HER A DRINK WHILE THE REST RODE IT, EVEN ERIKA, THAT WAS A HUGE MISTAKE ALSO.
THEN WE WENT IN THE DISATER SET, IT IS A MOVIE FILMED WITH PEOPLE CHOSEN OUT OF THE AUDIENCE, WHEN THEY ASKED FOR A GRANDMA TO PLAY A ROLE, ERIKA AND ANSHON BOTH JUMPED UP AND DOWN AND POINTED AT ME, I COULD OF KILLED THEM!!!! I DID GET PAY BACKS THOUGH WHICH I WILL EXPLAIN A LITTLE LATER.
FINALLY WE CAME TO BARNEY, WHICH WAS THE BEST. ALICIA AND I WENT TO THE SHOW WHILE THE BIGGER KIDS WENT ON THE BACK TO THE FUTURE RIDE, ALICIA LOVED IT, AFTER THE SHOW THEY HAD ALICIA STAY AND GOT A SPECIAL VISIT WITH BARNEY. I ALMOST CRIED. THEN HERE CAME THE RAIN AGAIN SO WE HAD TO HEAD BACK TO GIVE THE KIDS A WORLD VILLAGE.
THE NEXT DAY WE WENT TO THE ANIMAL KINGDOM WHICH WAS MY FAVORITE. I LOVED THE SAFARI THROUGH AFRICA WHERE THE ANIMALS COME RIGHT UP TO THE TRUCK, IT WAS VERY COOL. WE CAME ACROSS A JAMAICA SHOW WHERE THEY WERE DOING A DANCE AND PULLING PEOPLE FROM THE AUDIENCE AND THIS IS HOW I GOT MY PAY BACK ON ERIKA, IT WAS SO FUNNY TO WATCH HER OUT THERE DANCING WITH HER BIG BELLY, I WAS JUST SO GLAD I GOT THE CHANCE TO PAY HER BACK.
THAT DAY IT DID NOT RAIN THAT MUCH SO WE GOT THE CHANCE TO GO BACK TO THE MAGIC KINGDOM TO SEE SOME OF WHAT WE MISSED THE FIRST DAY. ALICIA RODE THE TEA CUPS AND DUMBO RIDE AGIAN, BUT HER FAVORITE WAS THE WINNIE THE POOH RIDE AND THE SNOW WHITE RIDE. BUT AGAIN IT STARTED RAINING SO WE WENT BACK TO THE VILLAGE.
THE LAST DAY WE WENT TO SEA WORLD,WHICH WAS KIND OF A DISSAPOINTMENT, WE DID NOT GET TO SEE ANY OF THE SHOWS BECAUSE WE HAD TO GET THERE ONE AND A HLF HOURS EARLY TO GET IN EVEN WITH BEING WITH MAKE A WISH. WE ALL KNEW ALICIA WOULD OF GOT IMPATIENT AND BAD IF WE WAITED SO WE TOOK HER ON ALL THE LITTLE RIDES AND WENT BACK TO THE VILLAGE AND TOOK HER SWIMMING.
WE ARE ALL EXHAUSTED BUT IT WAS WELL WORTH THE MEMORIES WE WILL HAVE FOR EVER. I WILL POST THE PICTURES I TOOK JUST AS SOON AS THEY ARE DEVELOPED ( I TOOK OVER 300 )
MEE-MA
Saturday, March 29, 2008 3:01 PM CDT
Hello All,
Five more days and we are off to Disney World. I do not know who is more excited, me or Alicia? We have a song that we sing that counts down the days until we leave, she wakes up every morning and before she even gets out of bed she will ask me how many days so she can sing the song, She is soooooo cute shen she sings it.
She gets her cbc done on Monday, I am very worried and excited to see what her counts have done in the last month. She is bruising so fast. She even got a Bruise the other day from just putting her seat belt on. And her legs are getting so tired lately, she most definatly will be in a stroller at Disney.
Little Anshon is getting so big, he is walking every where. Yesterday when I had went to the day care to pick up Alicia he yelled at me. It was so cute. He had seen me putting Alicia's coat on and not his, he is so smart. H knew he was not going with me ( his daddy was only minutes behind me to get him ) but he did not know that and was yelling at me. Of course it was only baby yells since he is not saying anything but ma ma and da da (mee-ma is next).
I promise to take alot of pictures at Disney and update about her counts before we leave. I hope all is well with everyone.
Mee-Ma Michelle
Saturday, March 15, 2008 1:13 PM CDT
I got the call from Robin today, and she answered many questions that I have had for a very long time. She said that Alicia will most likely be going to transplant very soon, depending on the rate her counts drop but also has seen a trend with alicia and her counts are most likely going to keep dropping. Dr Davies really wants to wait for Erika to have the baby, but could not promise it could wait. Alicia is haveing another cbc in two weeks which will tell us more about how soon her transplant will be.
this is a emotional roller and I told Robin that. I told her I needed some straight answers so I can get my self emotionally prepared so I can be stron g for Alicia, one of my worries is being away from my family during the holidays, and she told me it would be a good idea to start preparing myself for that. She also was not comfortable with saying Alica would be able to wait long enough for her make a wish in July, she said to not set a date any earlier than July but be open for the possibilty that we might have to move up the date. I told her there was no way we could move up the date because we could not go now with Erika due in a month and a half. She would not be able to walk at disney for five days, she is huge and tires very easily. Erika also has to have a c-section and would not be able to walk until she recovers.
I am planning on going to Erikas today to let her know every thing and the bad part about that is it is little anshons first birthday today. I have weighed the options of waiting until tomorrow but I know Erika would be upset with me if I did not tell her.
I stressed to Robin yesterday about my big concern about waiting til it to late for transplant and asked her what are we waiting for, and of course the answer was because of the risk of transplant and surviving. My nest question was if there was any iota of a chance that Alicia would not need a transplant and she said no. I then asked if there were better odds of survival if we put it off until her counts got very low or if we did it tomorrow, and she said no to that also. So my biggest problem is waiting because she is very strong now and would have more of a chance to fight than if she was sick, and with her marrow being ok now I feel like it would be best to get her new cells now!!!!!!
I am balling like a baby now so I will update later when I pull my self together.
Alicia's very best friend Mee-Ma
Wednesday, March 12, 2008 0:01 AM CDT
Everything went well in Cincinnati last week, Alica did real well (during her biopsy) she was still her little normal bad self during the trip!!! But that is my fault!!! We got there Wednesday and had an appointment with Dr. Davies on thursday. She had a Cbc done on thursday and her count's all dropped which has me very worried. Her Platelets are now down to 17,000 from 21,000 three months ago when we were there last. Her ANC also did a big drop to 770 from 2150 which has me sooooo worried. Her Wbc, Rbc and Hbg also all dropped below normal. Her counts have always been a roller coaster but some go up and some go down but they have never all dropped like this time. Her Fish Study results were all in normal range which is good (I think) we are still waiting on the other results from her Marrow though.
The waiting game is the hardest, Just pray they will come back all ok,if not we will probably be heading to transplant. I am hoping for reslts soon and will update when I get them.
More Happy news, my grandson Anshon starting walking every where, he is getting so big!!! He turns 1 on Saturday. Erika is doing fine just getting HUGE!!!!
I hope all is well with every one. Please keep Alicia in your prayers.
Mee-Ma
Tuesday, February 26, 2008 11:33 PM CST
Hello everyone,
Alicia is doing fine at this time. We have not had another cbc done since the last one in January, she will have one done next week when we are in Cincinnati. Hopefully her counts have came up. Her Platelets still have me and Dr. Davies very worried.
We will be in Cincinnati on the 6th for an appointment with Dr. Davies and a Biopsy done the following morning on the 7th. I pray this one will have good enough results so that Alicia will not have to keep having Biopsy's done every three months and maybe have them done in six months instead. She has had them done every three months for so long now and that is getting hard on her, and myself. I feel so sad every time she has to have one. I will update as soon as I get the results.
We have scheduled her make-a-wish for the middle of July. She is goning to Disney, we look up Mickey Mouse every night on the computer. Alicia is soooo excited. We wanted to wait until Alicia's baby brother is born so it wouldn't be so hard on Erika, she is so huge and wouldn't last an hour walking through Disney world. The baby is due in May, and depending on Alicia's Biopsy's results we might have to have another in three months which will be in June so that is why we decided on July. Make-a-wish came out to the house last week so everything is being planned now.
Alicia's baby brother, Anshon Jay is getting so big. He turns one in a couple of weeks, he started walking last week, I guess he is moving out of the way for the new baby (and last baby!!!). Erika and Big Anshon decided on a name finally, it is going to be Jay Shon. Oppisite of Anshon Jay. (kinda cute huh)
I hope everyone is doing well. We can not wait til camp this year so we can see everyone!!!
I will update as soon as we get results from the Biopsy next week.
Mee-ma Michelle
Thursday, January 24, 2008 11:54 PM CST
Sorry it been almost two months since I have Updated on how Alicia is doing. The Holidays have been very hectic around here.
We go back to Cincinnati the first of March for another Biopsy, and again every three months until transplant. Dr. Davies wants all of the Biopsy's done there and not in Kansas no more. She also has to have Cbc's every month now, she had one done last week and all of her counts stayed about the same, her Wbc and Rbc dropped slightly but not enough to worry Dr. Davies. Her Platelet count is what is worrying everyone, it was at 19,000 last week down from 21,000 the last time.
She is very tired alot lately, anyone that has met Alicia knows how very very very hyper and active she is, now she is laying down alot without even being told to. That has me very concerned.
Alicia's baby brother is getting so big, I put an updated picture in her album for everyone to see. Alicia is very protected of him. She always tells everyone "no touching, he's my baby Anshon" they are so cute together. I wonder how she will react with her new baby brother. YES ITS A BOY. We found out last week that Erika is having another boy, this is the last one, she is getting her tubes tied after this on (thank go), I already told Erika not to even try to bring me all of them at once. Boy is she going to have her hands full!!!
I will update again sooner than two months,I promise. I finally got a computer at home so I have no excuse now.
Mee-ma Michelle
Monday, December 3, 2007 1:52 PM CST
WE MADE IT BACK TO CINCINNATI ON SATURDAY. EVERYTHING WENT WELL.
HER PLATELET COUNT CAME UP FROM 19,000 TO 21,000. DR DAVIES SAID HER MARROW LOOKED OK BUT WE ARE STILL WAITING IN THE RESULTS FROM THE FISH STUDY.
DR DAVIES WANTS HER TO HAVE BIOPSY'S STILL EVERY THREE MONTHS BUT SHE WANTS THEM DONE IN CINCINNATI AND NO MORE IN KANSAS.
SHE ALSO WANTS CBC'S EVERY MONTH NOW INSTEAD OF EVERY THREE MONTHS, SHE ALSO TOLD ME THAT TRANSPLANT LOOKS TO BE SOON.
SHE WAS SUCH A LITLLE TERRIOR THERE, (THANKS TINA AND KEITH FOR PUTTING UP WITH US) ALICIA HAS SO MUCH ENERGY, SHE WORE JO AND JACY OUT!!!!!!
I WILL UPDATE MORE AFTER WE GET THE REST OF THE RESULTS. THANK YOU SO MUCH FOR CHECKING ON HER.
MICHELLE
Friday, November 16, 2007 2:06 PM CST
WOW IT IS SO HARD TO BELIEVE THAT ALICIA WILL BE 5 IN TWO DAYS!!!!!!! SHE IS GETTING SO BIG (NOT REALLY).
WE HAD A BIRTHDAY PARTY FOR HER LAST WEEKEND AND SHE HAD SO MUCH FUN. I NEVER KNEW HOW MUCH DORA THINGS ONE PERSON COULD HAVE, BUT I THINK ALICIA HAS EVERY DORA ITEM AVAILABLE.
WE LEAVE FOR CINCINNATI ON THE 28TH. ALICIA IS GOING TO HAVE ANOTHE BIOPSY, AND THIS ONE WORRIES ME (SO DID ALL THE REST) BUT AS WE KNOW THE LAST ONE SHE HAD DONE IN CINCINNATI WAAS THE ONE WHICH SHOWED THE ABNORMAL CHROMOZONE, WISH US LUCK ON THE RESULTS.
HER LAST CBC WHICH WAS DONE TWO WEEKS AGO SHOWED HER PLATELETS HAD DROPPED TO 18,000 SO THAT HAS ME WORRIED ALSO.
WE HAVE A PROGRAM HERE IN KANSAS WHICH IS CALLED SHARE THE SEASON, THEY DO AN ARTICAL ON A FAMILY EVERY SUNDAY IN THE PAPER AND LOCAL NEWS, AND ALICIA WAS CHOSEN TO DO THE LEAD STORY TO START OFF THE SEASON. I THINK THAT WOULD BE REAL NEAT.
HOPE EVERY ONE IS WELL AND CANDACE YOU, HALLEY AND JESSE ARE IN MY PRAYERS, WE WILL SEE YOU SOON.
JO AND JACY... I CAN'T WAIT TO SEE YOU WE WILL BE THERE SOON.
MICHELLE
Wednesday, September 5, 2007 7:10 AM CDT
We finally heard from Cincinnati with Alicia's results and there is no change. (THAT IS GOOD NEWS!!!!!)
Her blast count was at 1%, which it went down from 3% at her last biopsy.
Her Platelet count is still low, it was at 26,000, but he rest of her counts looked good.
I am sooooo relieved. They still want to do another biopsy in 3 months, hopefully that one is good like this one so we can go to every 6 months, little Alicia is getting upset even more every time we have to have one.
Anshon is doing well, he is getting so big, he is saying dada now, Erika keeps trying to get him to say mama but he hasn't said it so far. He giggles every time Alicia is around him, it is so much fun watching them two together.
Thank you all so much for keeping Alicia in your prayers, it means the world to us.
Michelle
Friday, August 24, 2007 7:19 AM CDT
EVERY THING WENT WELL WITH ALICIA'S BIOPSY YESTERDAY. SHE WAS SUCH A BIG GIRL WHEN THEY PUT IN HER IV, SHE DIDN'T EVEN CRY THIS TIME.
NOW IS THE HARD PART.....THE WAITING......THE WEEK THAT IT TAKES TO FIND OUT ANY RESULTS SEEMS LIKE A MONTH. I JUST PRAY THAT THE RESULTS COME BACK OK!!!!!! I DID FIND OUT THAT HER PLATELET COUNT WAS DOWN TO 28,000 AND THAT HAS ME VERY WORRIED.
ALICIA IS DOING FINE AS OF NOW, WE DID HAVE TO MAKE A TRIP TO THE EMERGENCY ROOM THIS WEEK END, ALICIA WAS OUT SIDE RUNNING AND SHE STUBBED HER TOE WHICH TOOK OFF THE TOP OF ONE TOE AND HER TOE NAIL, OF COURSE I FREAKED... WITH HER PLATELETS SO LOW IT WAS HARD FOR ME TO GET IT TO STOP BLEEDING, I HAD THE HARDEST TIME WITH JUST A STUBBED TOE, SO I DON'T KNOW HOW I AM GOING TO GO THROUGH A TRANSPLANT WHICH WILL BE A 100 TIMES HARDER THAN A STUBBED TOE.
ANSHON IS GETTING SO BIG, ALICIA AND HIM ARE SO CUTE WHEN THEY PLAY TOGETHER, ALICIA CAN GET HIM TO GIGGLE SO HARD, I LOVE WATCHING THEM TOGETHER.
DEPENDING ON THE RESULTS FROM YESTERDAY'S BIOPSY HER NEXT ONE WILL BE DONE IN CINCINNATI AT THE END OF NOVEMBER. I WILL KEEP YOU UPDATED WHEN I FIND OUT ANY RESULTS.
MEE-MA
Tuesday, August 14, 2007 4:07 PM CDT
Hello,
Sorry it has been so long since I have updated on Alicia. We are getting ready to leave Camp SunShine right now. The hardest part about camp is the good-bye's.
Alicia had such a fun time. I know she drove every one crazy. She went up to every one at least ten times each and gave them a hug. She danced so much at the custume ball that I was tired from just watching. Alicia is such a happy litlle girl she never slows down. ( I promise every one I did not teach her how she was dancing). We are going to miss every one so much. I am already looking forward to next year.
I found out today that Alicia's next Biopsy is going to be Thurday, August 23rd, Dr. Williams said he wanted her next one done in Cincinnati in November depending if it is not sooner from the results of this one coming up next week. I have this felling we are getting very close to transplant. But I have hope now, Camp has helped me alot!!!!!!
I will keep every one updated on her Biopsy results just as soon as I get them.
Mee-Ma Michelle
Monday, May 28, 2007 1:13 PM CDT
Sorry I just ot to a computer to update everyone on Alicia's results.
GOOD NEWS!!!!!!!!! They didn't show any increase in her Blast Counts. And still no show of the Monosomy Seven showing back up. I am so happy. Robin from Cincinnatti said they would be calling me next week and letting me know if Dr. Williams wants the Biopsy repeated in 3 months or if we get to wait 6 months this time. Thank you so much for every ones support I couldn't get through this with out you.
Michelle
Tuesday, May 8, 2007 3:44 PM CDT
Hello Everyone,
Sorry i haven't updated on Alicia in a while, we have been so busy with the new baby. He is getting soooo big, I will put more recent pictures soon.
Alicia is doing fine at the moment, she has another biopsy coming up on the 16th of this month, hopefully everything will come out fine like the last one and move her transplant to a much later time. I will let every one know the results just as soon as I get them.
Grandma michelle
Thursday, March 22, 2007 11:24 AM CDT
Hello everyone,
Lil Anshon is one week old today. He is doing so well. Erika is taking him to the doctor this afternoon for his one week check up. He is such a good little baby, Im at Erikas now watching him while she goes to the doctor to get her staples removed.
I was right about Alicia being jelous. She has been staying with me since Lil Anshon was born, Erika is still moving very slow and Alicia is such a little busy body. We were over Erika's Sunday and the very first time I picked up lil Anshon Alicia wasn't having it. She jumped up right in my lap and wouldn't get down so I had to put the baby down. We are going to have to work on sharing Mee-ma. She also tried to jump off the porch and Erika had to catch her, Erika said that felt like she was ripping open inside. Hopefully by next week Erika will be feeling better so Alicia can go home. She starts back to school Monday, so I think we will spend Sunday again so Alicia can get used to being around the baby and being careful with Erika.
We finally found a Pediatician here that we like, she has a lot of special need children as patients and she is very eager to learn all she can about FA. That made me feel at ease finally.
I will update later, the baby is stirring so I think he might need a dry diaper, ( its so weird having a little boy)
I hope all is well with everyone.
Michelle
Thursday, March 15, 2007 6:43 PM CDT
HELLO EVERYONE,
I BECAME ANOTHER MEE-MA TODAY. ALICIAS LITTLE BROTHER WAS BORN THIS MORNING AT 8:30 AM. ERIKA DID JUST FINE DURING HER C-SECTION. "LIL ANSHON" IS SOOOOOO CUTE. HE WEIGHED 7 LBS 15 OZ.
OF COURSE THE FIRST THING I DID WAS COUNT HIS FINGERS AND THEY WERE ALL THERE. HE DOESN'T SHOW ANY SIGNS OF FA THAT I COULD SEE, ALTHOUGH IM NOT GETTING ANY HIGH HOPES UNTIL HIS RESULTS COME BACK.
THE TEST IS THIS EVENING. MY SISTER IS TAKING ALICIA TO THE HOSPITAL TO SEE HIM. I KNOW SHE IS GOING TO BE SO JELOUS.
MY FRIEND IS GOING TO PUT PICTURES OF HIM ON ALICIAS SIGHT THIS EVENING SO HOPEFULLY EVERYONE CAN SEE HOW CUTE HE IS. ( YES IM A PROUD GRANDMA)
MICHELLE
Sunday, March 11, 2007 6:26 PM CDT
Hello.
well we are in the waiting stages again. alicia is going to have another biopsy done in 2 months, hopefully they stay the same as last which said her monosomy 7 had dropped low enough for it to be counted and her blast count was down to 2%. i know that the monosomy can come right back so im not going to get my hopes up about it staying away because i have not had very good luck lately on having high hopes.
alicia and me did a live interview for childrens miracle network yesterday. i was kinda scared but alicia was herself and took everyones attention. i wish i had all her energy.
the count down is on... im going to be another mee-ma in 4 days. i am sooo excited. the first thing im doing is counting for 5 fingers. i just know he is going to be so cute. erika is having a c-section at 8:30 on thursday the 15th.
ill put pictures on alicias site just as soon as i get them.
michelle
Thursday, February 22, 2007 10:38 AM CST
Hello,
Sorry I haven't updated on Alicia in a while. I still have troubles finding a computer to use.
We made it to Cincinnati safe. Our first flight went just as planned, we had a layover in Minnesota, and got to see Dianne and Michelle. That was soooo cool. Dianne fixed us an awesome Breakfeast. Thanks so much Dianne. Alicia was (and still is) very excited and wired. She knows she isn't at home and is testing mee-ma alot. I guess she's just beibg a tipacal 4 yr old.
We got great news, Alicia's biopsy results came back and they were awesome. Her blast count was confirmed at 2% and the abnormal Monosomy seven went away for now. This is all very hard to believe. Just within the past 2 months I went from being told my baby was going to transplant to finding out her counts are fine for now, I truely believe that it was a wake up call. Hopefully I will be able to handle it a little better when the time comes for transplant.
We have a couple of appointments in the morning before the family meeting on Saturday and Sunday. I will let everyone know how they turn out.
Thank you everyone so much for all the prayers you have said for Alicia.
O yea I almost forgot. Erika is having the baby on the 15th of March at 8:30 am. I am so excited to finally get to hold my grandson.
Grandma (X's 2 almost) Michelle
Wednesday, February 7, 2007 2:13 PM CST
Hello everyone,
Sorry I haven't been updating on Alicia but I have had problems getting accsess to a computer.
She is having her follow up Biopsy in the morning. Thursday the 8th. This is the one that determines if she goes to transplant or not, This is going to be a very long weekend.
We are going to Cincinnati at the end of the month for the meeting and they are going to do alot of tests on Alicia, I will keep everyone posted.
Erika is getting huge!!! only one month left til im a grandma again. I am so excited.
Michelle
Thursday, January 4, 2007 10:57 PM CST
Today has been a great day!!! I feel like a ton of bricks has been lifted off my shoulders. The last week has been a complete mess and today I haven't felt a bit af stress. I am so thankful for all your prayers, GOD IS SO GREAT!!! I know that alot of people all over the world has been praying for Alicia this past week and all the prayers were answered. Thank you again so much.
I have to admit though that I have been a little mad. I can't believe that a pathologist here in Kansas could make so bad of a mistake as he did. My whole world has been turned upside down because of someone reading her tests wrong, I even gave a notice at my job and started to exit Alicia out of school. I can say that all the calls I made today with the news of Alicia felt way better than the calls i made last week. I'm not mad anymore though, I forgive who ever the pathologist is. All that matters is that Alicia is fine for now and all the rest don't matter.
Dr. Williams did say that he wants to do another biopsy in the middle of Febuary just to make sure that the results are the same as he seen Wensday. I will not loose my hope and faith that they will be fine.
I believe God was sending me a message or maybe a wake up call, I know that no one is promised tomorrow and I should make every day count that I get to spend with Alicia. Who knows when her time will come for transplant and I believe that he was telling me to be prepared next time, and maybe it will be a little easier to accept because this totally freaked me out. BUT MY BABY IS FINE FOR NOW.
I am so glad that I won't be missing my grandsons birth. That was bothering me alot also but I knew I had to focus on Alicia but now I will be here!!!
I want to thank everyone again so much for all your support. I wouldn't of been able to get through that without you, Thanks so much.
I want to give a big thanks to Krisstina, Dianne, Charisse, Teresa, Kelly, Lisa, Robin, Suzanne, The prayer bears, Dr. Williams, Roxanne, Sallie, my mom, Kayla, my whole family and my FA family also. I hope I didn't miss anyone, I am just sooooooooo happt.
Grandma michelle
Wednesday, January 3, 2007 7:09 PM CST
WAIT TIL YOU READ THIS!!!!!!
I AM A TRUE BELIEVER THAT GOD GIVES MIRACLES!!! HE HEARD ALL THE MANY PRAYERS THAT EVERYONE WAS PRAYING FOR ALICIA. GOD IS WONDERFUL!!!!!!
I GOT A CALL FROM DR. WILLIAMS AT 4 PM TODAY AND I COULD HEAR THE SMILE IN HIS VOICE. HE SAID THAT HE GOT THE SLIDES FROM KANSAS AND HIM AND DR. DAVIS BOTH AGREE THAT THE PATHOLIGISTS REPORT IS NOT CORRECT. HE SAID THAT HE DOES NOT SEE ANY SIGNS OF LUKEMIA!!!!!! HE SAID HE WILL DO A FOLLOW UP BIOPSY IN FEBUARY JUST TO MAKE SURE BUT HE SAID ALICIAS TRANSPLANT IS CANCELED!!!!! THIS IS A MIRACLE!!! I AM SOOOOO HAPPY!!!
I WILL UPDATE MORE TOMORROW BUT I JUST WANTED EVERYONE TO KNOW.
THANK YOU SO MUCH FOR ALL YOUR PRAYERS, YOU ARE THE REASON SHE IS NOT GOING TO TRANSPLANT.
MICHELLE
Tuesday, January 2, 2007 7:08 PM CST
Today has been a little better for me. Im taking it one day at a time. I know that Alicia needs me to be strong so I am getting stronger every day.
I didn't celebrate New Years, Alicia and me went to bed early and skipped any celebrations. In 2008 we will have a big celebration and make up for this years.
I caught myself gettin upset this weekend and little alicia went and got her pillow and crawled up in my lap and rubbed my leg and said its ok meema, at that moment I thought to myself who is supposed to comforting who? She needs me more than ever now so I promised to get myself together, this is going to be a hundred times harder for her not me.
Cincinnati called today and said that her blast count was at 7% and she might need Chemo before her transplant to get her Lukemia in remision, so we might have to go sooner than we thought. They also said they found 2 possible matches in the national donor registary so that is a bit of good news.
I will keep everyone updated on any new results. I want to thank everyone for all the support you have given me in the las couple of days. I couldn't do this without friends like you.
Michelle
Friday, December 29, 2006 6:42 PM CST
TODAY HAS BEEN THE WORST DAY OF MY ENTIRE LIFE. EVEN WORSE THAN YESTERDAY WHEN DR. WILLIAMS CALLED. MY MIND HAS BEEN GOING A HUNDRED MILE AN HOUR, I KEEP THINKING OF EVERYTHING MY FAMILY IS ABOUT TO GO THROUGH. I AM SO SCARED. IF I CAN JUST MAKE IT THROUGH TODAY I KNOW I CAN PULL MY SELF TOGETHER. I KNOW I HAVE TO BE STRONG FOR ALICIA, I KNOW I AM HER CRUTCH AND IF I CRUMBLE SHE WILL HAVE NO ONE TO LEAN ON. THIS IS JUST ALL SO HARD FOR ME TO TAKE IN, I DIDN'T EXPECT THIS SO SOON.
ERIKA IS HAVING A HARD TIME DEALING WITH THIS ALSO. SHE FEELS SHE HAS TO CHOOSE BETWEEN BOTH OF HER CHILDREN. HER BABY IS DUE ABOUT THE SAME TIME ALICIA WILL BE GOING TO TRANSPLANT PROBABLY AND THEY TOLD ME TODAY THAT THE BABY WOULD NOT BE ALLOWED ON THE TRANSPLANT FLOOR. THEY SAID THEY ARE UNDER LOCK DOWN DURING THE WINTER BECAUSE OF VIRUSES. WE TALK ALOT LAST NIGHT ABOUT IT AND WE BOTH DECIDED IT WOULD BE BEST IF ERIKA SIGNED GUARDIAN SHIP OF ALICIA TO ME DURING THE TRANSPLANT SO I WOULD HAVE THE AUTHORITY TO MAKE ANY DECISIONS ON HER BEHALF. ERIKA IS GOING TO COME EVERY OTHER WEEK AND THE BABY CAN STAY HERE WITH MY SISTER DENISE. HOPEFULLY WE WILL FIND SOME WAY TO AFFORD TO FLY ERIKA SO MUCH.
THANK YOU SO MUCH EVERYONE FOR ALL THE SUPPORT IM GETTING. ( AND A EXTRA THANKS TO KRISSTINA, YOU ARE HELPING ME SO MUCH I TRUELLY APPRICIATE IT)
GRANDMA MICHELLE
Thursday, December 28, 2006 8:45 PM CST
Sorry I haven't updated in so long. We got Alicia's results today from the biopsy she had on December 20th and they weren't good.
I knew when I answered the phone and it was Dr. Williams that it had to be bad. He said they still detected abnormal monosomy seven and that he also got a report from a Pathologist here in Kansas that said her Blast cell count was high and he was having the slides sent to him to confirm it and do another biopsy in a month and if it was the same then she had to go to transplant.
I am so scared. She is my very best friend. I had such high hopes that her results would come back better but they didn't. Dr. Williams said they were going to start right away to search for a donor for Alicia. He did say that they found three possible matches in the blood cord bank.
This is very upsetting to me so I will update after I find out more.
If Alicia has to go to transplant after her biopsy next month that is when her mom Erika is due to have her little brother. This is all so hard.
Grandma Michelle
Thursday, December 28, 2006 8:45 PM CST
Sorry I haven't updated in so long. We got Alicia's results today from the biopsy she had on December 20th and they weren't good.
I knew when I answered the phone and it was Dr. Williams that it had to be bad. He said they still detected abnormal monosomy seven and that he also got a report from a Pathologist here in Kansas that said her Blast cell count was high and he was having the slides sent to him to confirm it and do another biopsy in a month and if it was the same then she had to go to transplant.
I am so scared. She is my very best friend. I had such high hopes that her results would come back better but they didn't. Dr. Williams said they were going to start right away to search for a donor for Alicia. He did say that they found three possible matches in the blood cord bank.
This is very upsetting to me so I will update after I find out more.
If Alicia has to go to transplant after her biopsy next month that is when her mom Erika is due to have her little brother. This is all so hard.
Grandma Michelle
Saturday, November 18, 2006 9:44 AM CST
TODAY IS ALICIA'S BIRTHDAY!!! SHE TURNED 4 TODAY, SHE IS GETTING TO BE SUCH A "BIG" ("LITTLE") GIRL. WE HAVE SUCH A DAY PLANNED.
WE HAD HER BIRTHDAY PARTY LAST SATURDAY, SHE HAD SO MUCH FUN. WE DECIDED TO HAVE IT EARLY FOR THE FACT THAT ERIKA'S STEP DAUGHTER HAD A BIRTHDAY THE WEEK BEFORE AND THEY HAVE THE CHILDREN EVERY OTHER WEEKEND AND WE WANTED TO MAKE SURE THEY COULD BE THERE ALSO SO ALICIA GETS TO HAVE TWO BIRTHDAYS. WE HAD HER PARTY LAST WEEKEND AT PUMP IT UP. THATS A PLACE THAT HAS BLOW UP SLIDES, A BLOW UP BOXING RING AND A COUPLE OF OTHERS. THERE WAS OVER 25 KIDS AND OVER 60 PEOPLE IN ALL THAT CAME, I THINK THE ADULTS HAD JUST AS MUCH FUN AS ALICIA DID. I WAS SO GLAD KRISSTINA AND JACY GOT TO COME. (THANK YOU KRISSTINA SO MUCH)
HER BIOPSY IS SCHEDULED FOR THE FIRST WEEK IN DECEMBER, I PRAY EVERY DAY THAT IT COMES OUT DIFFERENT THAN HER LAST ONE. I WILL LET EVERYONE KNOW HOW IT TURNS OUT.
WE HAD A LITTLE SCARE A COUPLE OF WEEKS AGO, ALICIA WOKE UP ON SUNDAY MORNING WITH A TERRIBLE TEMPETURE, WE TOOK HER TO THE EMERGENCY ROOM AND HER TEMP WAS ALREADY AT 102.5 THEY STARTED IV'S AND DID CBC'S AND TOLD ME SHE WAS GOING TO BE ADMITTED. SHE WAS SO SICK!!! THEN AMAZINGLY AFTER WE WERE IN THE EMERGENCY ROOM A COUPLE OF HOURS AND THEY WERE GETTING READY TO MOVE HER TO A ROOM SHE SNAPPED OUT OF IT AND WAS FEELING AND ACTING LIKE HER LITTLE NORMAL SELF. SO THEY GAVE HER SOME ANTIBIOTICS AND LET US GO HOME AND SHE HAS BEEN FINE EVERY SINCE.
WE ALSO GOT SOME GREAT NEWS!!! ERIKA IS HAVING A BOY!!!! SHE AND ANSHON WANTED A BOY SO BAD AND THEY GOT THEIR WISH SO NOW I'M GOING TO HAVE A GRANDSON. THEY DID A SONOGRAM AND COUNTED FIVE FINGERS ON EACH HAND!!!! ANSHON IS STILL BEING TESTED TO MAKE SURE HE DON'T CARRY THE GENE BUT I FEEL HE IS GOING TO BE JUST FINE. I TRUELY BELIEVE THE LORD IS WATCHING OVER ALICIA, AND MAYBE JUST MAYBE LITTLE ANSHON (THATS WHAT HIS NAME IS GOING TO BE)MIGHT BE A MATCH FOR ALICIA, I PRAY THAT HE IS.
I WILL UPDATE WHEN WE GET ALICIAS BIOPSY RESULTS.
GRANDMA MICHELLE (X'S 2)
Friday, September 8, 2006 7:14 PM CDT
Robin called me around 3pm today with some of Alicia's results from her Biopsy last week. I could tell from the sound of her voice that everything wasn't going to be good news.
She said that Alicia would not be eligible for the collectin study I had mentioned in my last update. She said her Aspiration and Biopsy was fine but There is a fish study they also do which they do three different tests which I don't quite understand yet. the first 2 were fine but the third one ( monosomy 77???) detected an abnormality in one of her cells, the one that has to do with forming Lukemia. This all still don't make since to me so if I'm saying it all wrong I'm sorry. Any way the said it was only 4.3% which is low but they want to keep a very close eye on her Bone marrow. They are going to do another biopsy in 3 months to see if there is any changes, hopefully it will go away which robin said it has with a couple of people but if it doesn't or gets worse than they will be considering going to transplant. They are going to do at least 2 more biopsys in the next 6 months so everyone please pray that just goes away!!!!SHE IS TOO YOUNG!!!!!
They are also doing her HLA typing they just need a little more blood to complete the test and then they will put it in the registary to find possible match's for her.
This has been a very bad day for me. Alicia is my very best friend so will everyone please keep her in your prayers.
I hope everyone like the pictures on the front of her page. They are of our trip to Cincinnati last week.
A very worried grandma
Monday, September 4, 2006 7:17 PM CDT
HELLO,
WE FINALLY MADE IT BACK FROM CINCINNATI. AND ALICIA IS CUB OF THE WEEK HOW COOL, THANKS EVERYONE FOR CARING!!!
THAT WAS A VERY LONG TRIP WE JUST HAD. WE ARRIVED IN CINCINNATI ON MONDAY AFTER SPENDING A COUPLE OF DAYS WITH FAMILY IN KANSAS CITY. ALICIA'S APPOINTMENTS DIDN'START TIL WEDNESDAY SO WE MADE SURE SHE HAD A LOT OF FUN MONDAY AND TUESDAY. MONDAY WE TOOK HER TO THE AQUARIUM IN NEWPORT, THAT PLACE WAS AWESOME WE HAD SO MUCH FUN (ALICIA EVEN PETTED A SHARK)I HAVE SOME REALLY COOL PICTURES I WILL POST AS SOON AS I CAN. TUESDAY WE TOOK HER TO THE ZOO, HER FAVORITE WAS THE MONKEY'S. ALICIA LAUGHED SOOOO HARD AT THEM.
HER APPOINTMENTS ON WEDNESDAY WENT FINE. SHE SEEN DR. WILLIAMS AT 830 AND AUDIOLOGY IN THE AFTERNOON. HER BIOPSY WAS AT 630 THURSDAY MORNING, THAT WAS THE FIRST TIME I HAD EVER SEEN HER BE PUT TO SLEEP, I CRIED WHEN HER EYES SHUT BUT MY TWIN SISTER WAS THERE AND TOLD ME IT WAS OK AND BE STRONG SO I GOT THROUGH THAT PART OF IT. SHE WOKE UP ABOUT 730 AND EVERYTHING WENT WELL DR HARRIS SAID. HER PLATELETS ARE ALREADY DOWN TO 30,000 SO HE WAS EXTRA CAREFUL FOR BLEEDING BUT HE SAID IT WENT FINE. AFTER WE TALKED TO DR. HARRIS AND DR. DAVIES WE TOOK ALICIA BACK TO THE HOTEL FOR A NAP BEFORE HER NEXT APPOINTMENT A 1PM WITH THE DENISTIST (WHICH SHE NEVER MADE IT TO)I WOKE HER UP FROM HER NAP AND SHE WAS BURNING UP. WE STARTED FOR THE HOSPITAL SO I DECIDED TO CALL ROBIN THE RN IN THE FA CENTER AND SHE SAID TO BRING HER RIGHT TO THEM. THEY TOOK HER TEMP AND IT WAS ALREADUY UP TO 101.2 AND IT WENT TO 103 WITHIN THE NEXT 30 MIN. THEY STARTED GIVING HER ANTIBIOTICS THE FIRST WAS SOMEHTING THAT STARTED WITH A Z I CAN'T REMEMBER THE NAME SHE WAS STILL BURNING UP SHE WOULDN'T LEAVE MY LAP THE WHOLE TIME. THEN THEY STARTED HER NEXT ANTIBIOTIC WHICH WAS CALLED VANCOMIOCIN ( I WILLNEVER FORGET THAT NAME) ABOUT HALF WAY THROUGH THE MEDICATION ALICIA KEPT SAYING SHE HAD TO GO POTTY ( YES WE ARE OVER THAT HILL!!!!)WHEN I TOOK HER TO THE BATHROOM I SEEN BUMPS ALL OVER HER LITTLE PRIVATE PART, I OPENED THE DOOT TO GET THE DOCTORS AND TURNED BACK AROUN AND BY THEN THE HIVES WERE ALL OVER HER BODY. EVEN IN HER HAIR. HER EYES EVEN WERE SWELLING THAT SCARED THE CRAP OUT OF ME. THEY STARTED PUTTIN BENADRYL IN HER IV (THANK GOODNESS I HAD THEM KEEP HER IV IN AFER HER BIOPSY)THE BENADRYL TOOK THE HIVES AWAY IMMIDIATLY. FROM THERE WE WENT RIGHT TO THE BMT FLOOR IN THE HOSPITAL AND WE WERE THERE FOR TWO NIGHTS.
SHES FINE NOW, I THINK HER LITTLE BODY JUST HAD TO MUCH AND SHE DIDN'T HAVE ENOUGH FLUIDS IN HER. EVERYONE AT THE HOSPITAL WAS SO MUCH HELP. THEY ARE AWESOME PEOPLE, GRETTA WITH GUEST SERVICES WAS SUCH A HELP, THANKS GRETTA. AND BETH AND ROBIN WERE RIGHT ON TOP OF ALICIA WHEN THIS WAS HAPPENING, THEY HELPED ME A WHOLE BUNCH, THANKS BETH AND ROBIN. THANK YOU TO EMILY AND ANDREA ALSO.
HOPEFULLY I WILL GET THE PICTURES ON HERE SOON I WILL LET YOU KNOW WHEN I DO.
ERIKA GOES TO THE DOCTOR FOR THE FIRST TIME THIS WEEK, I'M EXCITED ABOUT THAT ALSO.
THANKS AGIN FOR MAKING ALICIA CUB OF THE WEEK. THAT IS THE COOLEST.
GRANDMA MICHELLE
Tuesday, August 22, 2006 10:26 AM CDT
Hello,
Well we are getting ready for our trip to Cincinnati. We leave this Friday the 25th. I'm not looking forward to everything Alicia is getting ready to go through but I know the Lord has Alicia in his palm and will take good care of her.
She is having her Biopsy done on Thursday so keep her in your prayers that day. I will let everyone know how it turn out when we return.
I still haven't had any luck with deciding on a new Pediatrician for Alicia. I plan on making that my top priority when we get back.
Poor Erika is throwing up at least 3 times a day. Hopefully she will get through this part of her pregnacy soon. We are so hoping that she has a boy. I know little Alicia is going to be sooo jealous no matter what it is. I know she will be a wonderful big sister.
If anyone knows of any fun places to take Alicia in Cincinnati while we are there let me know. Thanks Krisstina for you ideas, we have already talked to guest services at Cincinnati Childrens to get passes to a couple of places.
I am so sad to hear that another child has lost her battle with this ugly disease. That is the scariest thing in the world.
Good luck to Michelle P this next week also she is going through surgery, everyone keep her in your prayers also.
Thanks again to everyone for all the support you have given me and my family. We couldn't do it without you.
Grandma Michelle
Wednesday, July 26, 2006 9:19 PM CDT
SORRY IT HAS BEEN SO LONG SINCE I UPDATED EVERYONE ON ALICIA.
SHE IS STILL DOING ABOUT THE SAME. WE FINALLY GOT OVER THE PROBLEMS WITH POTTY TRAINING. I AM SOOOO HAPPY!!!!! SHE IS DOING SUCH A GOOD JOB, SHE STILL HAS A COUPLE OF ACCIDENTS HERE AND THERE BUT OVER ALL SHE IS DOING GREAT.
WE ARE GETTING READY FOR OUR TRIP TO CINCINNATTI CHILDRENS. WE ARE LEAVING ON AUGUST 25TH. I AM SO REGRETTING GOING, I HATE TO SEE ALICIA GO THROUGH ALL OF THIS. I WILL KEEP STRONG THOUGH FOR HER, SOMETIMES IT GETS SO STRESSFUL, I BREAK DOWN AND CRY WHEN NO ONE IS AROUND. BUT I KEEP MY FAITH IN GOD AND I KNOW HE WILL GET ME THROUGH IT. IT JUST HURTS SO MUCH TO SEE LITTLE ALICIA GOING THROUGH ALL THE PAIN.
WE DO HAVE SOME GOOD NEWS THOUGH... IM GOING TO BE A GRANDMA AGAIN. ERIKA IS ABOUT 2 MONTHS PREGNANT. WE JUST FOUND OUT LAST WEEK. IM HOPING FOR A BOY, I NEED A GRANDSON ALSO.
WE ARE PRAYING THAT HER BABY WILL BE HEALTHY. ALICIA HAS A DIFFERENT FATHER THAN THIS BABY HAS, ERIKA IS ENGAGED TO A WONDERFUL GUY, I KNOW HE WILL BE AN AWESOME DADDY. WE HAVE SENT SWABS TO NEW YORK TO SEE IF HE CARRIES THE FA GENE, BUT THE ODDS ARE REAL HIGH THAT HE WON'T. SO PLEASE EVERYONE KEEP HER IN YOUR PRAYERS.
I SO HATE THAT I HAD TO MISS CAMP THIS YEAR. I HOPE EVERYONE HAD FUN!! I WILL BE THERE NEXT YEAR THOUGH, I CAN'T WAIT TO SEE EVERYONE AGAIN.
OH YEAH WE HAD ANOTHER DOWN FALL, ALICIAS PEDIATRICIAN SHE HAS HAD SINCE BIRTH HAS DECUDED TO STAY AT HOME AND BE A FULL TIME MOMMY SO WE ARE WITH OUT A DOCTOR FOR ALICIA AT THIS TIME. I AM LOOKING INTO SOME OPTIONS I HAVE BUT IT IS SO HARD FOR ME TO TRUST JUST ANY DOCTOR WITH ALICIA. HOPEFULLY I WILL FIND ONE I TRUST.
I GUESS THATS ALL FOR NOW. I WILL UPDATE LATER
GRANDMA MICHELLE
Friday, April 21, 2006 7:47 AM CDT
Hello everyone,
Sorry again for taking so long to update on Alicia. All is well here. Alicia is doing fine, her platelets are still dropping, they around the 50,000 mark.Her red count is slightly low also but the rest are fine.
Alicia is gettin to be such a big little girl. She is talking and signing alot better, I can almost understand all that she is saying. She loves to talk on the phone. She has such an awesome personality.
We have to watch her so close. She is getting to the age where she loves to run and play alot. This means alot of scrapes and boo-boo's. Last week she tried to run out of Erika's front door when she seen me pull up and fell right on her face going down the porch stairs, she scraped up her whole nose. She still looks like Rudolph the red nose reindeer. I have went through almost a shole box of band-aids in a month, she wants a band-aid on every little tiny scratch she gets. ( they always make her feel better.)
The most difficult journey now is potty training. I am having the most difficult time trying to get her to tell me when she has to use it. As long as I remind her she does fine. If anyone has any suggestions please e-mail me, all the advice is very much appriciated.
We are making our plans now to take Alicia to Cinncinnatti in August. I really hate having to miss camp this year. I had such a good time last year and so did Alicia, I can only take a week off work and I feel it is important to take alicia to Cinncinnatti.
I hope all is going well with everyone. Thank you so much for checking in on Alicia.
Grandma Michelle
Friday, January 20, 2006 2:35 PM CST
Hello Everyone,
I just wanted to give a little update on Alicia, She's doing really well. It's always good to get good news because usually most of the news we get is not so good.
Anyway Alicia went for her check up with the Heart specialist here in Wichita and we got really good news. All is well!!!!!! When Alicia was born she had two holes in her heart, and several mumors. When we went for her check up on Wednesday she told us that both holes had closed and healed completely, and all mumors are gone. YES!!!! She also got her cbc done but we don't have the results yet. (no news is good news, right?) Alicia had a hard day that day. It took two hours for them to run all the tests on her heart. It is very hard to keep a 3 year old to hold still for the Sonograms for two hours, there's only so many times you can play Dora the Explora over and over again before she finally said enough. After they were done with the tests her Pediatrician decided she wanted to give her a flu shot,that really didn't go over good with her. Then I had to take her to the lab to get her blood drawn, the lab is in the basement, and Alicia knows exactly where we are going when she gets off the elevator. Usually she runs right in, she's always happy, even we when go the lab. But not this time, she threw a fit the whole way there. Im just glad that day is over and it ended in good news!!!
We're planning now for Super Bowl Sunday. Alicia and I love to watch football together, Exspecially the KC Cheifs (loosers.) Our whole family is coming over our house for a Super Bowl Party, Alicia is going to have a blast, everyone always makes a big fuss over her, she loves it.
I will keep everyone updated on Alicia and I hope all is going well with everyone.
Michelle
The proudest grandma ever
Friday, December 30, 2005 1:46 PM CST
Hello Everyone,
Sorry it has been so long since I have given an update on Alicia. All is well here. Alicia is doing just fine, she is getting over a cold and a terible cough, but her counts are staying the same.
We had an awesome Christmas. Alicia got so many Dora Dolls, Dora is her favorite. She loves to open presents.
After we were done opening presents on Christmas morning I was taking a shower and erika was cooking breakfast and Alicia decided since there were still presents under the tree, that she would finish opening them, so I had to rewrap all the presents that went to Grandmas house. We all laughed so hard, Alicia just didnt understand.
We really did have a good Christmas. My boss gave me a cruise to Jaimaca, I am so excited. I am going in March and then we are going to make the big move to Cinncinnatti.
I will keep everyone updated on Alicia. Hope all is well with everyone.
Michelle Colgan
Monday, November 21, 2005 3:18 PM CST
Hello everyone,
Sorry it has been so long since I have updated on Alicia. Everything is going well. Alicia turned Three Friday. She is getting to be such a Big Little girl. We hired a Clown for her party and she loved it. His name was Sparkles and he did a real good job entertaining the 17 chldren that were there.
We are still planning to move to Cinncinnatti. We are going to wait till after the first of the year, so we can spend the Holidays with our family.
Alicia's counts have stayed the same. She just got over a Cold so her Platelets are low but that is expected.
I hope everyone is doing well, and I wish everyone a Happy Holidays.
Michelle
Sunday, October 2, 2005 2:48 PM CDT
Hello to everyone,
Sorry its been so long since I updated everyone on Alicia. Everything is going well with us. Alicia counts are staying the same, we got her CBC counts back last week, her platelets are at 71,000. She's just getting over a cold but besides that she's doing really well.
We are trying to make arrangements to move to Cinncinnatti, Ohio. I want her to be able to get the best medical treatment possible. The Doctors here are wonderful, Dr Reddy, her Pediatrician is a Awesome Doctor, but The team of specialist in Cinncinnatti know so much more about FA. So right now I am trying to figure out a way to afford to make such a big move, I'm a single mother like my daughter Erika and our finances are kinda tight, but my goal right now is to have Alicia close to the Doctors in Cinncinnatti. I know the lord is on our side and everything will work out.
I am sorry again for such the long period between updates, and I will try harder to make them more frequent.
Your friend
Michelle
Friday, August 19, 2005 3:22 PM CDT
Well we are all settled back home here in Kansas. I wish we could of stayed at Camp Sunshine forever!!!
Alicia had a very good time. It took me two days to finally get her to calm down. She is a hand full!!!
I am so glad I finally got to meet alot of new friends. I hope all is going well with every one now that you are back home.
Alicia gets her cbc count next week so I will keep every one updated.
Your Friend
Michelle
Monday, July 11, 2005 2:03 PM CDT
Alicia is doing fine now.
We had a big scare Friday. A man who live in the apartment next to Erika( Alicias mom) He picked her up and dropped her on her head. He had been drinking and was very intoxicated. We took Alicia to the hospital and they admitted her right away. They did a CT scan on her and there was no bleeding, she did have a concusion. It took the nurses almost two hours and twelve sticks before they could get an IV in Alicia, they finally had to put it in her foot. My Twin sister had to hold her down, so now Alicia is very upset with her and won't even let her hold her. I hope she forgives her soon. My sister loves her very much.
Good news, While in the hospital her platelet count went up to 61,000.
I'll update mor later. I am very tired. Hospital stays can wear you out even if it was only for 2 days.
Your Friend
Michelle
Thursday, July 7, 2005 12:40 AM CDT
Hello to all my new friends,
I am sorry I haven't updated you all on how Alicia has been doing. There hasn't been much change. Her Platelet counts have continued to drop, the last count was lower than the last. We have an appointment with Dr. Rosen on July 13th. They will probably schedule her Biopsy then. Dr. Rosen is her Hemotologist here in Wichita.
We went to the lake for the 4th of July. Alicia had a blast, it was her first time. She didn't go to sleep till real late I think it had to do with sleeping in a tent for the first time.
We are getting real excited about camp. There's only 36 days left!!!!! I am really looking forward to meeting everyone.
I will keep you posted on Alicia's counts. God Bless everyone who has given me their support.
Your Friend
Michelle
Wednesday, June 8, 2005 6:57 PM CDT
Sorry it has been so long since I've given an update on Alicia. She is doing just fine. We are still checking her counts every week but there hasn't been sny changes, her platelets are still low, but we are watching them closely.
Alicia is still learning more sign language every day. She comes home every day and teaches me a new word, I am so proud of her.
We are getting very excited about camp in august, I think I'm the most excited.
I will try to keep you updated more frequently.
Your friend
Michelle
Friday, May 20, 2005 10:10 PM CDT
ALICIA IS OK!!!! THANK YOU DEAR JESUS!!!!
I feel so much better, I'm finally going to be able to sleep soundly tonight.
Dr. Reddy assured me everything was ok for now. Alicia's platelets are still low but the rest of her counts were normal.We are going to have her blood checked every week now for a while, hopefully her platelets will go back up. She told me her platelets could go up and down for a long time, but for now everything is ok.
I guess I over reacted, but that scared the living day lights out of me. Alicia is my very, very, very best friend, she means the world to me, I guess i am just over protective when it comes to her.
Alicia did so well at her appointment, she is such a big girl. When we got to the lab to have her blood drawn she jumped right up in the chair and stuck her little finger out for the nurse before she was even ready. After the nurse drew her blood she stuck up her little thumb (which used to be her index finger) and said "good girl" I guess she is getting used to having it done. She didn't even cry. I was so proud of her. Afterwards we went across the street to mcdonalds and she had her favorite food which is chicken nuggets. she gets excited every time we pass a mcdonalds.
Erika had a really good day also. I haven't seen her so happy in a long time. She was the biggest brat on the way to the doctor, I don't think she slept well last night because she was very angry all the way there, But after we left she was all smiles. She appologized for the way she has been acting the last couple of days and even thanked me for every thing I have done for her and Alicia. She also got her favorite food at mcdonalds which happen to be chicken nuggets also, (they are so much alike.)I am so happy that she has some worry off of her, even though she has a child of her own she is still "my little girl". Erika is an only child and I raised her all alone her whole life, She is very spoiled.It made me feel so good to finally see her smile!!!!
I want to thank everyone who helped through these last two days. I never imagined so many people would care and take time out of their own problems to make me feel better. Thank you again sooooo very much.
Your friend
Michelle
Wednesday, May 18, 2005 10:43 PM CDT
Today has been a very bad day for me.
I called Alicia's doctor to find out her results from her blood tests and it wasn't what I wanted to hear. Alicia's platelets have dropped drastically. In January, when they were checked last they were low about 90,000, but when she was tested Friday May 13th, the results were around 60,000.
Dr Reddy, Alicia's Pediatrician, told me she had been on the phone with Dr. Williams at Cincinnatti Childrens most of the morning and they want Alicia to go there soon for a biopsy.
We are having her platelets re-counted Friday May 20th, Dr. Reddy said it could be possible that Alicia could of had a virus at the time her blood was drawn and we just didn't know it and that could of caused her counts to be low. Hopefully that is what happened but if not that means her Bone Marrow could be failing.
I am soooo scared. I don't understand any of this. My heart is hurting real bad right now, and I have been having trouble breathing all day. I don't know what I'm supposed to do next, I DON'T UNDERSTAND ANY OF THIS. I've been trying to read all the info I can find but it is so confusing to me.
Erika is not taking this very well either. She handles things different than I do. She is very angry. she has been snapping at everyone today. I am so worried for her.
Hopefully this is all a bad dream and tomorrow will be alot better.
I will let every know what the results are after she is tested on the 20th. Please pray for my best friend!!
Your Friend,
Michelle Colgan
p.s. I should of never took her for that test on Friday the 13th.
Wednesday, May 11, 2005 11:04 PM CDT
Sorry it has been a while since I updated everyone on how we are doing.
Alicia is doing ok. She gets her platelets counted in the morning so this will probably be a long night for myself.
We had a great Mothers Day. We went to my mothers and had a bbq. Alicia loves her Great Grandma. She gets away with everything over there.It makes me feel old when I refer to my mother as Great Grandma even though I'm only 35 years old.
I will keep you updated on Alicias counts just as soon as we find out.
Thank you again to everyone who reached out to us and gave us support, it makes all this madness so much easier to deal with.
Friday, May 6, 2005 3:00 PM CDT
Hello to all my new friends!!!
Alicia is still doing real well. We are going to the zoo this week end, I don't know who's more excited, Alicia or me.
We are looking forward to meeting everyone at Camp Sunshine, Alicia is going to have so many new friends, Wesley, Emma, Jo, Jacy, and so many more.
Thanks again to everyone who reached out to us, It means so very much.
Your friend,
Michelle Colgan
Tuesday, May 3, 2005 1:26 AM CDT
THANK YOU SO VERY MUCH!!!!!
It was a shock to me when I went to Alicia's web page and seen so many people had been there. This is all so new to me,I can't keep from crying so forgive me if at times this does't make since. I never imagined that there could be so many people that cared.Thanks again Kristina, this is helping me so much.
Alicia is doing so good. She has to get her blood checked again in 2 weeks, but I have very Hi hopes that they have came up and are ok.
She is teaching us sign language. She comes every day from school saying a new word. she can sign Please, Thank you, Stop, Cow, Duck, Pig, More, and I love you (I tought her that). she is so very smart I am soooo proud of her!! (I never imagined that my 2 1/2 year old granddaughter would be teaching me sign language).
I want to thank Sallie for helping me get Alicia's web page started. You are a true friend!! If it wasn't for Sallie this wouldn't have happened. Sallie is adding pictures of Alicia everyday. I wouldn't even begin to know how to do it. Thanks alot sal, your my girl!!
Friday, April 29, 2005 1:08 PM CDT
My name is Michelle Colgan. I am a very proud grandma of a little 2 1/2 year old girl. Her name is Alicia Reed.
She came into this world on November 18th,2002. Alicia was breech and had to be delivered by a c-section.Alicia's mohter (my daughter)was very young. She was only 16,so as you probably know she was very scared.
All went well during the delivery, Alicia was so beautiful!! The first thing I did, as any proud grandma would, was to count her fingrs and toes. I had to count for a second time because I only counted four fingers at first. But my first count was correct. Alicia didn't have any thumbs. I tried not to act upset because my daughter was lying on the table not knowing anything, but then a nurse said "oh look she doesn't have any thumbs and shes missing a ear." I could of killed that nurse at the time but I was to worried for my daughter and granddaughter.
The doctors checked Alicia out and said she was fine and put her in my daughters arms, Erika had the biggest smile I have ever seen her have. I left the delivery room and started to bawl like a big baby.
The same day the pediatrician that we had chosen for Alicia came to see her. Her name is Dr. Rebecca Reddy.She examined Alicia and said she would be back the next day.
The next day November 19th, 2002 was a day I will never forget. Dr. Reddy had brought in a whole lot of litature on Fanconi Anemia, She said she had researched every thing she had found wrong with Alicia and she was 95 ure that Alicia had Fanconi Anemia. She told us that this was a terminal genetic disorder, and that she would sooner or later need a bone marrow transplant. She said that she would have to send a sample of her blood to New York, and it would take 2 weeks to get the results. That was the longest two weeks of our lifes.
During the two week wait my boss pulled info of the internet on Fanconi Anemia and I tried to read anything I could about this disorder. My boss contacted Suzanne Laucke, the family support cordinater for the Fanconi Research fund, she called me and offered her support and also got me in contact with someone in my home town of Wichita Kansas who was going through the same thing my family was going through. Her name was Kristina and she helped me alot. She brought over to my house alot of info on Fanconi Anemia and we got to meet her two special girls that have Fanconi Anemia also. (thanks Krisitna)
When we got the results back from Alicia's blood test I had already began to accept that they would be possitive and they were.
The past two years have been a battle for my whole family, but it has been the hardest for Erika and myself. Erika is still very young and at times I believe that she is in denial. She is a VERY good mom, she makes sure Alicia goes to all her doctor appointments and she is very protective of her, but in most I try to deal with all this madness myself. Erika just wants Alicia to be treated as normal as possible.
In the 2 1/2 short years that Alicia has been with us she has been through 3 surgeries. They operated on her eyes on her very first Halloween. She has also had both of her index fingers moved to thumb positions (its called some big medical word). She uses her hands very well, I am glad we made the choice to do that. She also has to see several specialists, and we took her to Cincinnatti last July to have her evaluation. (thank you to everyone there who helped us, most of all thank you to Robin)
Alicia is doing well at this time. Her blood counts are kinda low but nothing to worry about now. We are looking forward to going to Camp Sunshine in August.
I will keep everyone updated on her progress.
Thursday, April 28, 2005 11:52 PM CDT
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