Thursday, August 1, 2013

Update on Daniel

Hello wonderful Friends and Family,

My phone has been blowing up with your love and support for Ryan and I and of course Daniel.  I am really struggling with the emotional energy to keep repeating the happenings over and over.  So I thought I would come back to this blog so that you can check on Daniel's journey with this new diagnoses.   If you were not aware fill free to look through the past post on how we discovered Daniel's immune system problems almost three years ago.  This is the current stuff that we are dealing with.  Thank you for all your love and prayers we really appreciate it and we are so thankful for such amazing family and friends!!!

Ryan and I wanted to give a quick update on Daniel. We had a check up a few weeks ago and I went in to discuss the results today(Thursday, July 25th) with his immunologist. The results are not good. His Igg levels continue to be very low and the doctors have now diagnosed him with a disorder called WHIM. Starting next week we will begin a treatment called "Sub-Q Ig therapy". We have two options the first option is to admit him to Phoenix Children's monthly for this treatment. The second option is to do a weekly treatment at home, this would require training and an in home nurse for a time. Whatever option we chose, We will be doing for 12 months before reevaluating his levels again and deciding our next steps. The scariest part is that if this doesn't work the next step would be a bone marrow transplant.

We are very scared and would love for prayers for wisdom as we make some very important and difficult decisions this next week. We also are praying that our insurance will cover these procedures as there are some other options but these are the easiest on Daniel. Lastly, we need prayer for gentle words as we have not told Daniel any of this yet.

As of today, August 1st we went back to PC Dermatology. The appointment was not good. We saw Doctor Hansen, who is the head of dermatology he explained that there are only 25 cases of WHIM in the United States and that it is very unlikely that any treatment will help the warts that Daniel is dealing with. As I'm sure you can guess we are pretty upset about this and are simply praying that Jesus steps in and the doctors are wrong.

Again thanks for all the love and prayers~
Ryan and Angela

1 comment:

Thank you for your comment, I am humbled at the thought that you are taking time from your day to comment on my little'o post. I hope you enjoy!