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Blogs by Connie Faust
Finally a diagnosis for Elizabeth!
7/15/2009 10:41:35 AM
As Elizabeth's Mommy says, "Keep praying, keep believing"
You don't often see faith as steady as this young mother's.
Day 293
Sorry about not updating yesterday, I had trouble getting on the site. SO, WE HAVE AN ANSWER... It is PTLD, Post Transplant Lymphoproliferative Disease. It is not a good answer but it is an answer and we have treatments and we have God. He has carried Elizabeth through lots of 'not so good diagnosis'" and He WILL carry her through this and heal her. We HAVE to BELIEVE that with ALL our heart. My faith in Jesus and KNOWING that He CAN heal has gotten me this far and shown me that I have patience and strength that I never thought possible. This whole journey has not been easy but these last couple of weeks have been more than overwhelming and I still have PEACE in God's plan. I BELIEVE so much in Elizabeth and in her purpose on Earth to be a testimony of God's love. She is a fighter. The little girl screamed ALL night again. She has pretty much been screaming since she was extubated at 3 on Monday. Can you imagine just sitting there and screaming day and night for 40 hours. She is not going to stop until she gets what she wants. And that is fine. There must be a reason for this and although it has been SO hard on me I'm trusting that maybe she just might need to be screaming right now. She is getting better. Her carbon dioxide levels are MUCH better, we have stopped the anti-fungal that was requiring ALOT of fluids and was hard on her organs and we have been reducing her Hi flow oxygen. She is now screaming with words and yesterday while we met with the doctors, her and Grammie did lots of stickers. She knew all her colors and could answer all questions asked. She is AMAZING and we all love her SO MUCH!
So, we started treating Elizabeth for PTLD last tUesday when the doctors starting thinking it might be the problem. Her treatment right now will be Rituximab and Hydroxyurea. This is a vERY RARE disease (surprised?!) and the treatment is not definite yet. My doctors are contacting doctors at other institutions that have more experience with treating this to make sure we all do what is best for Elizabeth. This is caused from the EBV(epstein barr virus) that has gotten into a B cell and infected it and started duplicating. The goal is to kill those cells, just like our goal was to kill her cancer cells and WE DID! Pray for our doctors and that this treatment works with NO other side effects. Pray that Elizabeth will be restored to TOTAL HEALTH very soon and be HAPPY HAPPY HAPPY! My thanks and love for all your prayers and support. Please continue this journey with us so you can see how GOOD GOD IS! Keep Praying Keep Believing Love, Michelle
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