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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.



Tuesday, October 21, 2008

Day +126

Everything is still going good here in room 4 at the RMH. Yesterday we got up and got all ready to go to the hospital for her infusions when Donna the Nurse called right when we were walking out the door to tell us that we did not have to come because she had worked it ou to where Alicia was going to be able to get her IVIG at the RMH by a Home Health Nurse that way we would only have to be in Day Hospital three days a wek instead of four. I LOVED that idea but after talking for a few minutes we both remembered that Alicia needed her dressing and caps changed and a Cbc done to check her counts so we went ahead across the street to do that and we were back to our room in little over an hour. It was great, we got to take a nap and play and it was awesome to be here and not at the hospital.





Well this morning the Home Nurse got here around 11am to start her IVIG, she should be about done. Alicia is taking a nap. It felt really good to be able not to have to set an alarm and rush around to get Alicia over to the hospital. She does have to be there in the morning at 8:30. Hopefully next week they will be able to do both IVIG infusions here and that will cut us down to two days a week only if her Platelets will last that long.





I can not believe Alicia will be 6 years old in 28 days. Time goes by so fast. That means her Mommy and Daddy will be here again in 24 days. I know she will be so happy. I finally get to see the boys as long as they are not sick and Alicia is doing ok. Dr Davies has alreay OK'd them to come for the four days that Erika and Anshon will be here. Denise will be here the following week for a FULL week and I am looking very forward to that also. Denise took some pictures of my grandsons last weekend and sent them to me look how big they are getting. Don't forget I left Jayshon when he was two days old, he is sooooooo big and soooooo cute............ The first one is of Anshon Jr.............................


I CAN NOT WAIT TO SEE THEM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks again for all of the Support an Prayers!!!!!!!!!!!!!!!!!!

4 comments:

Anonymous said...

LOVE the new photos of the boys!! You have such beautiful grandchildren. Glad to hear that the meds situation is going well. LOve, Dianne

Charisse said...

The boys are very cute! The second one (what was his name again?) has really grown up since we last saw a photo! I am glad the IVIG is being done in your room. You need to be able to just sit in there and relax more! Hospitals always make you go somewhere SO early...and to think they are dealing with people who are not too well! I struggle to get anywhere real early in the morning! Ha!
Love Charisse

Anonymous said...

Glad things are still going well.
This whole psalm is so good for all who are overwhelmed. Continuing to pray!
Psalms 102:1-2 (A Prayer of the afflicted, when he is overwhelmed, and poureth out his complaint before the LORD.) Hear my prayer, O LORD, and let my cry come unto thee. Hide not thy face from me in the day when I am in trouble; incline thine ear unto me: in the day when I call answer me speedily.
Prayer Bears

Anonymous said...

I was just thinking of you guys...and wanted to send an e-mail to say hi. Hope you are having a good day! Dianne