Monday, March 19, 2012

Day +40

Timothy is doing well :).  No more tiptoeing.  Rash is almost gone.  His liver is better after we stopped his anti-fungal meds.  He won’t be on another anti-fungal meds, though typically patients are on it until day 100.  Timothy will be tested weekly for any fungal infections.  Since he hasn’t had any fungal infections with CGD, he is at a lower risk.  But please pray for him that his new immune system will kick in and protect him from fungus.  He did start itching, but it’s more due to dry skin, a side-effect to chemo.  His skin has been really dry.  Today’s lab results from the clinic visit was good.  ANC 2000+ and all his other counts look good. 

Claire and Timothy waiting for our doctor:

photo 1

Look how dark he looks (side-effect to his 1st chemo).

photo 2

Playing after his clinic visit :).

Below are some video clips of Timothy eating.  He’s been eating really really well :).  Our old Timothy is coming back.

Yes, he is using his hand to use his spoon…

We also transitioned Timothy into a big bed.  He wasn’t sleeping well because his play pen was just darn too small for his big body.  As soon as we transitioned him, he’s been sleeping much better.

As I was driving home with the kids after our clinic visit, I couldn’t help but give thanks.  Timothy has had a trying life.  To even come to this decision to go through with BMT was very difficult.  But I can’t believe, we are here and it’s been 40 days since his transplant.  He has done so well.  I remember asking for many prayer requests before his transplant and one of them was for Timothy’s BMT to be textbook.  God didn’t answer that prayer request in an affirmative.  And I am so thankful.  Timothy did better than textbook.  Most BMT patients lose all their hair.  Timothy didn’t.  Most BMT patients go home with IV nutrient.  Timothy didn’t.  Most BMT patients are in-patient at least 6-8 weeks.  Timothy didn’t.  And he only lost 2 lbs.  I couldn’t have asked for more.  God gave us something beyond our requests.  What I thought would be the best case scenario didn’t compare to what God had in mind.  Many times I think I know best, especially for my family.  But I don’t.  And this just proves it.  Thank you, God. 

And of course we cannot say enough about Texas Children's Hospital.  We are so thankful God led us here.  We LOVE our doctor. 

Lastly, I wanted to also mention our last place of residence before we moved.  It was through CAM (Church Apt. Ministry).  CAM is a great ministry.  We received a phone call every week for prayer requests.  They sent us cards and encouragements throughout our stay.  We felt strengthened to know that another group of people we have never met were praying for us. 

God provides.  And He provides abundantly.  Thanks for reading :).


  1. Amen!!

    is T sitting in a lego box in the second pic??? hahaha. sooo cute!! so thankful that he is doing well. will continue to pray for the building of his new immune system and protection from fungus :)

    60 more days until you guys can come home!!!

  2. I can't tell you how happy this post makes me. I love hearing good news about Timothy! What an awesome God we serve. So thankful for CAM and to the great doctors you met. You guys have been through so much, but God has always been there in all the details. Amazing. Can't wait to see you guys.

  3. Eleanor just watched these videos with me and she looked very surprised that Timothy hs the same set of chopsticks as her, and he can actually use them! :)

  4. Cried tears of joy while reading this!