1st Transfusion

Hi everyone....

     Just wanted to let everone know that Olivia had her 1st transfusion last thurs    Her hb was a 7.2 and her retic. was 4. He decided to go ahead with the trans. because she was feeling a bit more tired and  she began to look very pale. She did so well    Our next appointment is 6/12. we will see her counts and then if all is good we will follow up in 4 weeks. Her dr feels she may need a trans every 2 or 3 months...I guess only time will tell.

Kathleen

Glad to hear it went well. Will she be continuing on hydroxyurea?

Hi Andy

No she has stopped the hydroxyurea her dr feels that it wasn't doing much anymore....
I have to say ... I know what comes with transfusions...however, I cannot stop looking at Olivia she looks so perfect! Her lips are so red she asked me if she was wearing lipstick! You know alot of our family and friends knew about Olivia but know that she has been transfused everyone is asking what can they do? So my husband and I are thinking up some was to raise money and we are planning to have a blood drive in the near future.....I think now people will be willing to be more involved and we are grateful for that.....

Kathleen

hi andy, and kath,

i am having a blood drive on friday june 6th at my workplace. the media is coming out and i would like for u to come,kath.it is in lauryns name. united blood services had posters made up with her story and picture. they also made flyers....(i would love to give them ur number so they can do the same for liv.(plus she is the feature story on their website...bloodhero.com)

they informed me that she is the poster chid!!! her face will be on their buses. also, in 2 weeks i have a radio show in phoenix where im gonna talk about thal and take listeners questions.....

ALSO, july 2nd im giving a seminar at US AIRWAYS CENTER in front of 1000 people. the media will be there, and we will be on the news and in newspapers...

i also forgot to mention at phx childrens hosp. june 16th,lauryns next tx, UBS is coming with the media to film lauryns tx, they are bringing a mascot to cheer up all the kids

im the guest of honor at a lodge here in mesa for the BROTHERS OF SICILY to talk about thal and ask for donations!!!!
 !!! life is too short!!!

lets be family and find a cure!!!!!

love,
christine

whew!!! i have so much going on and i wish my cousin and i were amicable so she can include Olivia in all of this...........

Hi Christine!

It's so nice to see your post after such a long time.

I'd been wondering where you were off to; but now I know that you've got quite a handful of things going on

I hope our little "Cuppy Cake" is doing well.


Wishing you all the best for your campaigns and the future

Hi Kathleen and Christine,

Blood drives are a great idea and so needed, especially in the summer months when people tend to forget because they're busy with vacations and family activities. And as I told Courtenay last year when the Syracuse Red Cross wanted to talk to someone with a need for blood, nothing will inspire people more than seeing a young one who is there because someone donated blood. In Courtenay's case, her child came into this world healthy because people donated blood so Courtenay could get through a difficult pregnancy. In your cases, you both have lovely young children who are dependent on the blood of others and in my opinion, nothing will touch hearts more than seeing these young girls as 'spokesgirls" for giving blood.

Being Italian myself, I know all about families, but I hope you can both see that this is something that rises above relations to embrace the family of humanity. We all need each other to do our best in the battle against thalassemia and from a public relations view, seeing two young girls who need blood has the potential to do so much to educate the public about both the constant need to donate blood and also about the crisis of thalassemia that is taking place in the US today. I hope some way can be found to get everyone working together on something that will help every thal.

I might also mention that cousins knowing each other and the unique lives they will face because of thal can have many benefits for the cousins in emotional and psychological terms. Best wishes to you both and I hope the blood drives are successful and become an ongoing effort.

Kathleen,

You brought up an important point that should be stressed for parents facing transfusing their child for the first time. The difference before and after transfusion is remarkable and when one sees the improvement in a child after the transfusion, it becomes much easier to accept the needles, etc. As a group, we see so many parents anxiously take this first step and what you and others have described about the positive effect of transfusing can have a great impact on parents facing this for the first time.

Hi everyone....
 
Olivia had her follow-up appt. 6/12 her hb was 9.8 and her retic was 1.0 we have to go back on the 30th for a re-check.....I will let you know what happens.

Kathleen