Tuesday, October 14, 2008

Kenyon Update

Today we had our 100 day evaluation meeting with the doctor (even though it is actually more like 112 days). It was kind of complicated and that makes it a little difficult for me to put into words exactly what the results are and what they all mean. I should really make Kenyon write this because I think he understood it all a little better than I do. But here goes... (Some of you might be bored with all the details - long story short - Kenyon is doing quite well).

Kenyon is doing well. He still HATES taking pills but his appetite and energy are improving - gradually, of course. The blood marrow tests show no sign of CML. That is great! However, other tests show that 97% of his marrow is from his donor and 3% is still his own. That is not uncommon for patients at about day 100. But, it has to get to 100% donor marrow. The problem is that left unchecked the 3% could start producing leukemic cells. The doctor reassured us that there are "many tools in the toolbox" for this problem. The first step is to speed up his medicine taper. That forces the donor marrow to step it up and fight off the 3%. The drawback to this tactic is that the chance of GVHD (graft vs host disease) is more likely - but not necessarily guaranteed. (Defense for GVHD is to continue to avoid any infection and sunburn). Next there are some meds or infusion methods that they might try. It also means that we continue to make frequent visits to Huntsman and more tests in month to check those percentages.

So, overall it was quite good news.

While I was sitting in the waiting room this cute gal approached me wanting to talk. She and her husband are from St. George and a little younger than us. Her husband is preparing for a transplant at the end of the month. They have a 1 and 3 year old and are also expecting a baby. She had so many questions. It was nice to talk with her and share a little of our experience. I am so glad to be this far out and able to tell her how blessed we have been and encourage them that it will work out. I know the stage she is in and it is such a scary, overwhelming place. I just can't imagine having to uproot from home and move to go through this. That will be a whole different challenge for her.

I have also been following an 8 year old boy, Trent, here in the South Jordan area who is losing his battle with AML. They had a great fundraiser for him at Chick-Fil-A on Monday. It was packed so hopefully it provided a lot for his family. If you want to be inspired - read what he has written on his blog. He is an amazing kid!

We continue to be so grateful for all the love, support, babysitting, prayers, etc. Thank you!


Burts said...

I am glad that things are going well. Please let me know when I can take Gavin. I want to especially help when you have your baby because I know what that is like:)

Andrea said...

I checked out Trent's site and it IS amazing - I don't have that good of an attitude. He is soooo amazing. I feel so badly for him and his family for having to go through this. Good luck to Kenyon. And hurray for you - just a couple more weeks!

Kristine said...

thanks for the update. he continues to be in my prayers!

i am sure that lady is so grateful that she talked to you! it probably gave her a little light at the end of a tunnel.

Steve and Dayna Magleby said...

Yay for the good news!! So glad to hear that things are going well.

Angie said...

oh my gosh, i can't look at Trent's blog any more, it is making me bawl. I can't believe the things that happen to people in this world and what great attitudes they manage to have through it all. you guys are prime examples! Glad to hear Kenyon is doing well, he will continue to be in our prayers. Love you guys!

Moms for Marriage said...

I'm so glad things are going well. I finally have a blog for Prop 8. mamapro.blogspot. My baby will be two on Nov. 6. Are you sure you don't want to wait three more days. We are the same here. Come and visit. I always say that. This is Tracy by the way. Wishin' you the very best! Say hi to the girls for me.

Hilary and Dave said...

Kenyon is always in our prayers. I'm so glad he's on schedule with regard to recovery. I'm so happy that ha and you and your family have made it this far...the worst is over!!! You guys are amazing.