Julia's 68th Transfusion Tomorrow

Tomorrow Julia's energy level will get a real boost! Her golden color will temporarily turn rosy and she will also get her appetite back. It's transfusion day! What a trooper, what a courageous little girl she is. Sixty-eight transfusions and she's still strong. This doesn't mean it doesn't affect her, quite the contrary. She knows she looks different than other kids.
She dislikes her "golden" eye and skin color, she tires of itching (effects of bilirubin), and her bones do really ache. However, God has given her the grace to endure and she's just starting to comprehend what it means to have her genetic disease. Its not easy for her and it's a struggle for us to watch her suffer.

We met with her doctor here in Tarbes yesterday. He examined her spleen and advised to have it removed in the near future. It's not only enlarged, making it uncomfortable but it's also making her transfusions too frequent (every 5 weeks instead of every 8). There is a slight possibility of lengthening the time in between transfusions with the spleen gone. However the downside is that she will have to take penicillin daily for the rest of her life as the spleen helps the immune system fight bacteria. This is her reality.

I share all of this, not to pity ourselves or Julia, but to share our reality with you. I know some of your reality is much more painful than ours. I've read your blogs and admired your courage. It's only by the grace of God that any of us are standing.

Julia's future: tomorrow a transfusion, a splenectomy in the near future, one day a bone marrow transplant? We hope and pray it's so. I am still believing for a miracle. God has set the stage to do something wonderful and I'm anticipating something huge. Really.

Well, I'm off to get Julia's nightly meds ready...

Thank you for reading Julia's blog. It's a way you and I can keep in touch. Thank you for all of your encouraging comments!