Discouraging News

This past week I got some very discouraging news. On Wednesday morning, Dr. Martinez (the BMT doctor at TCH in Houston), called and said that at this time I was not a candidate for transplant. They didn't have a protocol for me and couldn't create one, and because of my history of infections even on IVIG (an immune boosting medication) they couldn't do the transplant. This is the same thing that we have heard from all the other transplant clinics that we have sent my case. As you can imagine we were devastated. We had been waiting, praying and believing that they were going to do the transplant, and things that she had said at our last appointment indicated to us that it was going to happen. It felt as though we had been strung along for the past few months, and my grandfather believes that she, and the rheumatologist did not handle my case well. After hearing the news, my mom, grandfather and I met with my pediatric rheumatologist here Austin, Dr. Carrasco for over an hour on Thursday. He said that he had talked with several pediatric and adult rheumatologist in Austin, Houston, Dallas, Seattle, Chicago, Duke in North Carolina, and Philadelphia. They all said the same thing their is nothing more that they can do for me, that he is not already doing. I will never be able to get into a clinical trial because of my multiple diseases, and the fact that none of the doctors have heard of anybody else with my particular combination of auto-immune diseases. There is a drug that I could try called Rituxan, but the fact that I have failed so many other drugs, and have an unusual disease combo, makes the chances of it working very low. Their is also a very rare neurological side-effeect of the drug, called PML that is almost always fatal. That, with the other severe side-effects of the drug, and my history of rare side-effects on other medicines I've taken (mainly aseptic meningitis from IVIG), make the risk of taking the drug greater than the benefit. Their is nothing left that the doctors can do for me. I have been on chemo for so long (18 months), and the long term side-effects of it (developing cancer, organ problems, and other side-effects) are not good, so the doctors have decided to taper me off of it 5mg every 2 weeks. They could have stopped it cold turkey, but knowing my body I preferred to taper off of it. At least afterwards my hair will start growing back. We then will just let my body do what its going to do, and try to manage my pain as best as we can. Because of my age, for how long I have been sick, and the complexity of my diseases, the chances of my condition spontaneously going into remission are very low. They say that usually people flare about 1 1/2-2 months after stopping the medicine, so I go back and see Dr. Carrasco in July, so we can evaluate how I am doing. I will be able to travel in about 6 weeks (the dose of chemo will be low enough), so that I can go on my Make-A-Wish trip to go see the cast of NCIS. They are working on getting everything arranged. As you can imaging we are all in shock and devastated about the news. I had never seen Dr. Carrasco so emotional, that he almost cried. He never really has to tell patients that there is nothing more that can be done for them.

I have been reflecting, praying and meditating a lot lately about all of this. My perspective on life is changing. I want to live my life to the best of my ability each day. The day we found out the transplant wasn't going to happen I ate sushi, even though I know it's not good for me to on chemo. I didn't care anymore, I just wanted to enjoy life, and still do. I prayed everyday that they were going to do the transplant, and I know that God heard my prayers. Even though the transplant didn't happen, I know God has a reason for it, and that it hurts him to see me in pain. I am becoming more at peace each day, and I do have my moments where I cry, yell, scream, get angry, frustrated and discouraged. I know that this didn't happen to me but for me. 

Yesterday, my grandfather sent me the following poem:

God, give me grace to accept with serenity
the things that cannot be changed, 
Courage to change the things
which should be changed, 
and the Wisdom to distinguish
the one from the other.

Living one day at a time, 
Enjoying one moment at a time,
Accepting hardship as a pathway to peace, 
Taking, as Jesus did, 
This sinful world as it is, 
Not as I would have it, 
Trusting that You will make all things right, 
If I surrender to Your will, 
So that I may be reasonably happy in this life, 
And supremely happy with You forever in the next. 

Amen

I plan on posting this on the mirror in my bathroom and reading it each morning. I think that this prayer is very true. I need to know and trust that all of this is part of God's will, and of course that is easier said and done. Despite this illness, I am truly blessed. I have a roof over my head, clothes on my back, shoes on my feet, food to eat, a warm bed to sleep in, and wonderful friends and family. My life may be difficult at times, but who's isn't. We have to accept and deal with the challenges that life brings us. As long as we have, faith, determination, and the willpower to keep living life to the fullest, than we will be OK. I trust that God only has good things planned for me, and I know this, because of all that he has already given me. This roller coaster I'm on, is the most wild ride of my life. Even though I have been sick, I wouldn't trade my life for anything, because it has made me into who I am today, and has taught me so much in life. I know that whatever happens in my life God will be right there with me. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta