June 22, Day +36 -No Miracles

Hi Everyone,
Unfortunately, I have more bad news to share. I feel terrible that all of you have had to ride this emotional roller coaster with us and that it has been so stressful. I wish that I had some good news to share but the dark cloud keeps following us around (similar to pigpen and the dust storm). 

Please read Andrew's blog (andrewsfightonestepatatime.blogspot.com) he is in a very critical state and we need an army of people praying for him day and night.  As you all know, I was in a state of shock and depression from Connor's failed BMT and was just angry and bitter and despite all the kind notes and stories of encouragement, I remained in this funk.  The ONE thing that got me out of it was Joe's blog detailing how Andrew squeezed his hand and showed that he was still fighting. The knowledget that this strong, amazing boy and his courage to fight and encourage others in the midst of all the pain that he was enduring was enough to get me out of my mental state.  I knew that I must get moving and stay strong and continue fighting for Connor and our entire family's mental and spiritual state.  I thought that as long as God brings Andrew out of this ordeal with a successful transplant, then it will not all be for naught, that it was all worthwhile.   So for these reasons, I really need Andrew to pull through.  I need him to talk to Connor about his journey and encourage Connor when he has to go through a second transplant or when he gets cancer.  Andrew is an inspiration to me and to so many others and I just can't accept any other plan.  I just will never understand a God that will cure his cancer, cure his chromosomal defect, find a bone marrow match within a week and then to take him away?  And to have the nicest people, Joe and Jennifer have to make this agonizing decision- just not fair?  So, I BEG, please continue to pray for a miracle for Andrew.

As for Connor, we are at home and he is really happy and eating well.  His counts are going down and our second chimerism test showed the same result as before, less than 2% donor cells (this is the lowest that the test results show, there is no 0%) .  The doctors started GCSF again, to help his immune system to grow back faster, they have given up any chance of the donor cells engrafting and we are now just waiting for his cells to grow back- it could take as long as 3-12 months.  I am praying that his immune system will come back as strong as it was before transplant and that we didn't cause too much damage with the 10 days of chemo.  We still haven't had the heart to tell him the news and are seeking wisdom for how and when to tell him and a little part of me was still hoping for better news.   

 Connor will need another bone marrow transplant sooner or later.  We hope to find a perfect match so that we can proceed with a bone marrow transplant before he gets sick. He was doing well with the IVIG infusions, but these infusions will not be effective forever, as with any drug, your body will become immune to it and therefore a bone marrow transplant will be necessary and it is his only chance for a cure.  Otherwise, if we can't find a perfect match, he will probably get some sort of cancer in his GI tract, a very painful cancer, and we will be in a desperate position to undergo full chemo therapy and then bone marrow transplant.  He is now 7 1/2 years old, the median age of survival is 25 years old. We don't have much time. It took us 4+ years to find this donor, so I am making another HUGE REQUEST.

Please help us run more bone marrow drives!  Please ask your churches, fraternities, soroities, other Asian groups to host a drive.  We just need a venue, a date and time and  we can help find someone to coordinate the entire drive for you.   There are many others searching for a donor now! Please help spread the word so that my son may have a chance to live a long and fruitful life. He has a big heart, a generous spirit and has so much to give back to the world, if only given a chance. 

I am unable to respond to all of your comments directly so IF you are interested in hosting a drive, please email me directly at stephmgk@gmail.com and I can put you in touch with the organization or coordinator who help with the drives. 

THANK YOU ALL for going on this journey with us.  Thank you for all the words of encouragement and support, it has helped us more than you could know.  We go back next Tues for more labs and will hope to finally have some good news for everyone.

Enjoy the weekend!
Stephanie