Sunday, November 24, 2013


It’s been a while.  The past several months, I have inadvertently taken a mental break from blogging.  It was my way of not having to think much about Timothy’s health.  Life with Timothy has always been coupled with his medical updates and his sickness.  After our celebration in June, a part of me wanted to move on, even if it was for just a few months.  I also want to find a new direction for this blog as well.  Timothy’s well-being changes the reason why I began this blog.  I am still pondering and contemplating.  Any thoughts?

But I did want to share about where we are as a family in regards to our experiences with Timothy’s transplant.  Not too long ago, I had an epiphany.  Or should I say a deeper understanding of the state of my heart.  The past 4 years have been riddled with many highs and lows.  Highs that were so high.  And lows that were too low.  But through it all, God allowed my faith and held on to our family.  I knew we were not alone.  This knowledge was what kept our family together and gave us hope.  There were many days, despite this knowledge, our hearts questioned and complained.  Why us?  Why our son?  A few months back, this head knowledge was translated into my heart.  Now, if someone were to ask me about our experiences with Timothy, I can whole-heartedly, unreservedly say that it was a blessing.  A blessing that Timothy was diagnosed with CGD.  A blessing that he had a transplant.  A blessing that our family endured difficulties.  And a blessing that it was our son and this happened to us.  I truly and honestly can say this.  (Of course by His Grace).  So many wonderful relationships have been forged.  So many blessings have been experienced (too many to name).  Our eyes of faith have been opened to see more clearly what it means to believe, depend and have hope.  And this would not have been possible without Timothy and his illness.  Life will trudge on.  But that’s just life.  When I forget my ways and start complaining, I hope to remember what I have written this day.  (Just as a side note… don’t get me wrong, there have been many days and weeks even in the past year, where I have complained, worried, nagged and felt hopeless due to Timothy’s health.  But it was through those times, where God revealed my heart and taught me what it meant to trust and believe, especially when things didn’t go as I had planned.  Lessons were learned and our family grew in our faith.)

As we approach Thanksgiving this week, I am filled with gratitude.  For my son.  His health.  For peace in my heart.  For new and old relationships that have blossomed.  For life.  For faith.  And for this walk.

My sweet boy…

photo (23)

Recently we took some family pictures through our talented photographer friend.  I will share more pictures soon!

Happy Thanksgiving everyone!!!

P.S.  I feel the need to include a medical update :).  Timothy is off all oral meds.  His platelets have been sort of holding up on its own (sort of).  His platelet shots have been monthly at a very low dosage.  We will check his counts again in 2 weeks to see if we will continue the shots or to wean him off.  Other than the platelets, he is doing great!  A week ago, 11/17th to be exact, there was a break through in his socialization.  Up until now, he was fearful of people and always clung on to me in public.  All of a sudden, he started playing on his own without me by his side.  Just like that.  He was running around and playing with other kids.  Without any reservations.  Carefree and happy.  It was amazing.  Another reason to be thankful!


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  2. Alice, your posting truly uplifted my spirit and I can fully relate to your insight on Timothy's journey. Love this picture, Timothy looks fantastic. Wish you all the best and have a happy Thanksgiving!

  3. Beautifully said! I completely agree. He looks amazing! So glad things are going well!

  4. Alice - Thanks for the blog! My daughter has CGD and up till recently (she just turned 13) her medical issues have been relatively minor. Now, however, we're faced with some severe issues and her medical team (at NIH) is recommending a BMT. I'm curious how you decided on a transplant center? We live in CA and NIH suggested several across the country including CHLA.

    1. Hi Charles. I would be happy to share any information with you re: BMT and the transplant center. It might be easier via FB or email? What's the best way to contact you?