Friday, March 21, 2014

Monday March 3, 2014 -Davis Update

Courtney, I hope that you were able to feel of Davis' strength through his email before reading mine.  This is the email that goes out to everyone for an update.  I wanted to let you know all the information.  There are of course still so many unknowns, but the known is that we will keep moving forward.  Your letter to Davis offered such strength and love for him.  He looks up to your example every day.  I know that this will be difficult news for you to hear so far away, but know that your amazing love and spirit is felt here so strongly.  I miss you in times like these, however, also more than other times, know that you are in the right place for you...for Davis and for our family right now.  I love you so very much and thank you for your incredible strength that you often willingly and knowingly give to me and especially for all the times that I pull from your strength when you don't even know. Love, MOM!
PS I'm here!
No words through email can ever soften unwanted news.  Unfortunately, Davis' bone marrow function results that we have been waiting for, are not as we had hoped and prayed.  To this you say, but he looks so good and strong.  As we have all come to know, this disease is difficult to describe and understand, I will do my best. We are so grateful for his amazing senior year thus far.  It will be incredible to experience him graduating.  He has worked so hard and has been one of the most stalwart and diligent individuals that I know. 
His bone marrow is currently functioning at 20%, which is far below the 80% that they were hoping to see. We are at a critical point to decide where to go next.  They suspect that the high dose meds are the reason for his 20% function and yet, he needs to get off the meds to prevent further complications, too many to name, long term.
The reason for my delay in getting the information out, has been the back and forth discussions, between going straight to a bone marrow transplant or waiting out a taper from the meds to get him to a lower dose that will sustain him through graduation. They are still consulting with a few specialists. 
They suggested the need for a bone marrow transplant, and then for 48 hours, we were told that there was not currently a good enough match(they are looking for a certain number of markers needed for the best outcome) Then we were told that there are a few potential non-related donor matches upon looking at the registry. (If you are so inclined, I am thinking that Ryan may do an Eagle project to inform the public about and organize a bone marrow registry.  I will try to provide more information soon. However, from what little I understand at this point, it is free and simple to register to be a bone marrow donor.  You will be tested for anyone in need and they will call if you are the best match.  One story I heard, is of a man that was called 20 years after registering as a match for a 6 year-old little girl.  I express my testimony for mothers out there, that they would be ever grateful for your life-saving donation. It was very tender for me when there was a thought that there wasn't a match and I don't want any one else to feel that uncertainty).

My emotions are all across the board as his strong desire as well as his continued preparation to serve a mission, or head off to college within the year was up for discussion. 
Thank you for all the calls and concern the past week. Jeff has been out of town and it took us a moment or two to gather our wits and all the information.  We truly feel of your prayers and support. 

I am challenged at the need to simplify and explain, however, here it goes;
*As for now the most agreed upon plan is to begin tapering off the high dose meds, and watch labs closely.
*Doing this slowly over the next 3-6 months will hopefully allow him to complete high school with much of the immunity and strength that he has been having for the past 8 months.
*If his body can tolerate the taper, and get his levels to a point of sustaining on lower meds without the need for transfusions, then there is talk of maintaining on the lower meds for college or mission in the fall or spring.
*hope to sustain on lower dose meds for 2 years
*Upon returning, undergo a bone marrow transplant.
**Key uncertainty : If at any time in the next 21/2 years his body relapses, he will go directly to transplant. Thus there is also talk of going directly to transplant this summer and then if all goes well, starting the college and/or mission a year from transplant.
*So yes, either way, now or later, the consensus is that he will need a bone marrow transplant to survive. 
Sorry for the bluntness, there is just no nice or brief way to tell this story.(side note; when the other kids heard the news, they were reflective on the past 4 years, tender and supportive.  Ben looked deep in thought and then said, "I know, Davis should go on his mission first, then when he gets back they will test his blood and say, "what! we do not see any more Aplastic Anemia.")"
Ahh the faith of a 13 year-old.  It reminds me that it is okay to hope and even plead for miracles.

Breathe, Stay calm and Carry on. I keep commenting that although the bootstraps are stretched out and worn, we will pull them up yet again and go forward.  After so many thoughts of issues beyond our control, race through ones mind, we must choose to carry on, anticipating the little moments of life and planning for the best.  Go to movies, on adventures, enjoy spring and cherish family and friends.  We hope you will continue to share these regular moments and laughter with us. Davis will for certain be making the most of his 'go big or go home' mantra. Life is fragile, Hold Tight. 
Our family is sincerely grateful for all your love over the past 4 plus years.  I am in awe at the struggles and challenges faced all around us every day.  We pray for you to have the peace to be sustained though you own trials. [HOPE] a powerful medicine.
Thank you for crying, praying, laughing and especially loving with us.
We love you all, The Coxes

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