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!
Friday, January 14, 2011
Sunday, January 9, 2011
Interviews Start Tomorrow
Tomorrow starts the beginning of various interviews with newspapers, magazines and television reporters. Am I ready? Not really. I am, however, ready to move forward and look for new possibilities and treatments for Julia but I'm not super excited to talk about these past 6 months and all the painful emotions that drudges up.
Tomorrow, Patricia LaGuillard, from La Depeche newspaper will be over to interview Steve and me. Patricia is an amazing journalist and mother, who also has had a sick child of her own. She has been very accurate in the many articles she's written about us and sympathetic to our situation. It will be sad to recount to her our many disappointments with this IVF process but at the same time, it will be an opportunity to share with her the hope we have in Christ.
Steve is already pursuing different medical leads and possible treatments for Julia back here in France. "It's not the end for Association Julia, rather it's just the beginning", He says.
We haven't yet sat down together and decided exactly what our involvement will be for DEPJ (Double Espoir Pour Julia) this year. But we both agree that it needs to continue if not for us, for other families with children of rare, genetic blood diseases. This would continue to bring hope to many others.
Tomorrow, Patricia LaGuillard, from La Depeche newspaper will be over to interview Steve and me. Patricia is an amazing journalist and mother, who also has had a sick child of her own. She has been very accurate in the many articles she's written about us and sympathetic to our situation. It will be sad to recount to her our many disappointments with this IVF process but at the same time, it will be an opportunity to share with her the hope we have in Christ.
Steve is already pursuing different medical leads and possible treatments for Julia back here in France. "It's not the end for Association Julia, rather it's just the beginning", He says.
We haven't yet sat down together and decided exactly what our involvement will be for DEPJ (Double Espoir Pour Julia) this year. But we both agree that it needs to continue if not for us, for other families with children of rare, genetic blood diseases. This would continue to bring hope to many others.
Tuesday, January 4, 2011
La Rentree! First Day of School!
So, the girls did it! They went back to school and I even saw some smiles at lunch. There was apprehension and some nervousness at the thought of walking back into the courtyard full of kids. Julia was nervous of stares and questions regarding a baby and her bone marrow transplant. The night before she shared her fears of not knowing how to answer the many questions. Annie was unsure if her previous friends would want to play with her or if they had found new friends. What an answer to prayer that Julia made it throught the gates into her class and Annie was grabbed by her close friend, Maiena, to join the other girls and exchange stretchy bands!
Most of all, I felt finally at home dropping our girls off at school and chatting with other moms.
It's been amazing being back. I do have the blues several times a day, but I also have highs and sense the love of this community. I'm not the only one who sacrificed and gave my all. I am so happy to be back in Azereix, in France, among friends, among generous people!
Vivre la Rentree!
Most of all, I felt finally at home dropping our girls off at school and chatting with other moms.
It's been amazing being back. I do have the blues several times a day, but I also have highs and sense the love of this community. I'm not the only one who sacrificed and gave my all. I am so happy to be back in Azereix, in France, among friends, among generous people!
Vivre la Rentree!
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