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ALICIA'S JOURNEY WITH FA

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



Saturday, August 2, 2008

DAY +45




MOMMY IS HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
SORRY I DID NOT UPDATE YESTERDAY, IT WAS SUCH AN EXCITING DAY. ALICIA WAS SO HAPPY TO SEE HER MOMMY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! SHE WAS ASLEEP WHEN ERIKA AND I WALKED IN AND ERIKA TURNED ON THE LIGHT AND YOU SHOULD OF SEEN THE SMILE ON BOTH OF THEIR FACES. IT IS A MOMENT THAT WILL BE IN MY MIND FOR A VERY VERY LONG TIME.
ALICIA HAD A VERY GOOD NIGHT. SHE EVEN ACTUALLY GOT OUT OF BED AND WALKED. SHE WANTED TO SHOW MOMMY HOW SHE COULD TAKE HER MEDICINE. AND SHE WANTED MOMMY TO PLAY AND COLOR AND WATCH A MOVIE. THE FIRST WORDS SHE SAID TO HER MOMMY WAS "I GO BYE BYE WITH YOU" I THOUGHT O MY HOW ARE WE GOING TO OVERCOME THAT ONE, BUT ERIKA JUST TOLD HER THAT SHE NEEDED TO GET BETTER FIRST AND SHE WOULD TAKE HER WHERE EVER SHE WANTED JUST AS SOON AS SHE IS ALL BETTER. ALICIA SAID OK TO THAT. BUT WHAT WE NEED TO OVERCOME IS THE SAYING GOOD BYE PART TOMORROW. ERIKA HAS ALREADY DECIDED THAT WHEN SHE LEAVES SHE IS TELLING HER THAT SHE WILL BE BACK VERY SOON THAT SHE NEEDS TO GO GET DADDY AND BRING HIM BACK. ALICIA HAS SAID OK TO THAT ALSO BUT TOMOROW WILL BE THE TEST.
ALICIA HAD A NOSE BLEED LAST NIGHT. IT ONLY LASTED ABOUT FIVE MINUTES AND THEY GAVE HER PLATELTS SOON AFTER. SHE EVEN ATE MORE THAN EVER LAST NIGHT, ERIKA FED HER SO ALICIA TOOK ALOT OF BITES.
IT FELT SO GOOD TO GET A GOOD NIGHTS SLEEP. I AM GOING TO GO TO THE RONALD MCDONALD HOUSE AGAIN TONIGHT TO SLEEP. IT WILL BE ANOTHER THREE WEEKS TIL I WILL GET TO AGIAN UNLESS WE GET OUT OF HERE FIRST. ERIKA AND ANSHON ARE COMING BACK ON THE 22ND. ALICIA IS SO HAPPY HER DADDY IS COMING THAT TIME. ANSHON LOVES ALICIA ALOT AND HE IS VERY GOOD WITH HER. SHE MISSES HER BROTHERS THOUGH ( AND SO DO I MORE THAN EVER!!!) ERIKA BROUGHT THE CAMCORDER WITH ALOT OF VIDEO'S WITH THE BOYS AND ANSHON AND SHE LOVED WATCHING THEM.
TINA AND KEITH AND THE KIDS ARE COMING TO GET ME IN A COUPLE OF HOURS TO TAKE ME TO DINNER. YES!!!!!!!!!!!!!!!!!!!!!!!!! NO HOSPITAL FOOD!!!!!!!!!!!!!!!! I LOVE TINA SO MUCH. SHE IS SUCH A VERY VERY GOOD FRIEND. I THINK WE ARE GOING TO EAT MEXICAN. YUMMY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
WISH US LUCK FOR TOMORROW. I PRAY IT ALL GOES WELL AND THE GOOD BYES ARE NOT THAT HARD.
HERE IS ALICIA OUT OF BED FOR THE FIRST TIME IN A LING WHILE WITH MOMMY..........
THIS ONE IS FUZZY CAUSE SHE IS WALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!

HERE IS MOMMY FEEDING ALICIA.........................

6 comments:

Kelly said...

I do love seeing those two smiling faces!!!!I continue to keep you all in our daily prayers!! Sleep well and enjoy your rest and dinner!!!
Hugs and blessings,
Kelly Bennett
Marshall 15 and 5 years post bmt,Amelia 8 FA-G, Nathan 5 Non-FA

http://www.caringbridge.org/la/marshall_n_amelia

Anonymous said...

Am so glad they're together but oh I'm sorry it's going to be for such a short time.
This is the second half of the hymn "Abide with Me." The words are so comforting. Know that I'm still here praying!

5. Thou on my head in every youth didst smile,
And though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee.
On to the close, O Lord, abide with me.

6. I need Thy presence every passing hour;
What but Thy grace can foil the Tempter's power?
Who like Thyself my guide and stay can be?
Through cloud and sunshine, oh, abide with me!

7. I fear no foe, with Thee at hand to bless;
Ills have no weight and tears no bitterness.
Where is death's sting? where, grave, thy victory?
I triumph still if Thou abide with me.

8. Hold Thou Thy cross before my closing eyes,
Shine through the gloom, and point me to the skies.
Heaven's morning breaks, and earth's vain shadows flee;
In life, in death, O Lord, abide with me!

Prayer Bears

Charisse said...

Awww...it is SO nice to see photos of Erika and Alicia together. Alicia looks SO proud and SO excited to see her mum. Erika, your smile is beaming too! I can imagine it would be so hard for Erika and Alicia to say goodbye to each other tomorrow. There is nothing like a bond between mother and child.
Praying for the goodbyes to go ok.
Love Charisse

Anonymous said...

Michelle,
It's wonderful to see Erika and Alicia together, enjoying the simple things--eating, walking, hugging, and loving each other.
Both of them look very happy and content just to be together.
I pray that all will go well for Alicia and that in time, you will all be together again (and not in a hospital).
I hope you've enjoyed your rest and your dinner--you deserve it and so much more!
Am getting excited to go to Camp Sunshine...can't believe it begins this Friday. You and Alicia will be missed and in my thoughts and prayers. Camp won't be the same without Alicia's hugs and kisses!
But next summer, you will be there, I know it!!
Love, Mary Ann Gormley

Anonymous said...

Actually found a passage I haven't shared yet! Lifting up prayers right now!
Psalms 17:7-8 Shew thy marvellous lovingkindness, O thou that savest by thy right hand them which put their trust in thee from those that rise up against them. Keep me as the apple of the eye, hide me under the shadow of thy wings.
Prayer Bears

Anonymous said...

I love seeing Ecrika there with my lil angel.. you can tell how happy alicia was and that makes me happy. you both are in my prayers