Well this morning around 10:45, just a few minutes before we were getting ready to leave for Houston, I got a call from Dr. Martinez's office at TCH, saying that she had gotten some notes and recent bloodwork from Dr. Cline-Burkhardt, and that she wanted to cancel tomorrow's appointment, so that she could present my case to the entire transplant team, and that in 3-4 weeks she would get back to me with a desicion, and that if I didn't here anything by the end of the month to call back. She is preparing to go into inpatient rotation for the next two weeks, so she won't be in clinic. As you can imagine I wasn't very happy, because I had psycologically and emotionally prepared myself for the appointment, so I broke down and cried. My grandparent's and mother took this as the best possible news, because the fact that she didn't want to see me, means that she didn't need to evaluate me again to decide whether or not to take my case to comittee. We feel that the fact that she is taking the case to commitee is an excellent sign, because she feels that I have a case that could benefit from a BMT. My grandparents were more nervous about having to go down there, and didn't tell me until today, that the fact that she wanted me back down their so soon wasn't a good sign, because that would have meant that she hadn't decided whether or not my case would benefit from a transplant, and whether or not to take it to commitee. They also feel that if she were going to do Il-2 that she would have kept tommorow's appointment. I was also very frustrated, because it is another month of not knowing whats going to happen, waiting, and continuing to feel miserable.
I had gotten angry at God for a moment, because I have been praying and believing, and trying to have a joyful and greatful heart, but still don't have definitive yes or no answer. Its hard not to get angry at God when we dont get what we want, and have prayed for. It makes us feel as though he isn't hearing our prayers, and that he doesn't care about us, but that is the farthest thing from the truth. God hates to see any of his children suffer, and in pain. I believe that the Lord has a transplant in my future, because he wouldn't have put that desire in my heart. I love what Psalm 37:4 says, "Take delight in the Lord, and he will give you the desires of your heart." I am keeping this scripture close to my heart, because it helps me to know that I should continue to trust and have faith in him, and to continue to ask and pray for those desires. Waiting will still be diffiuclt, and I may have some crises of faith along the way, but I can have peace knowing that my Heavenly Father is in control, and right their with me. I will continue to give updates as they become available. I meet with my pediatric rheumatologist Dr. Carrasco on Monday, to just check in so he can see how I am doing. I don't believe he will be changing much or anything with regards to my current treatment. Thank you for all of your prayers, encouragement, and support, you don't know how much it helps me get through this roller coaster of a journey.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
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