Tuesday, March 26, 2013

Hope and Clarity

Kids have so much hope.  They don’t seem to dwell on the past, but live in the present.  This is true of my Timothy.  For about a month and a half, his platelet count has been low.  FYI, here’s a quick definition of platelets from the web…“Platelets are irregularly-shaped, colorless bodies that are present in blood. Their sticky surface lets them, along with other substances, form clots to stop bleeding.  When bleeding from a wound suddenly occurs, the platelets gather at the wound and attempt to block the blood flow.”  With low platelet count, you get bruises very easily.  Yesterday, while Timothy was playing, he tripped over himself and fell on his face on our laminate floor.  And immediately, this is what we saw:

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With a normal platelet count, this would not have happened.  For a kid with fairly high tolerance for pain, this fall would not have bothered him.  But last night, he was clearly in pain.  As his chubby hands tried to cover his wound, he started screaming in pain.  So sad.  But within a few minutes, he was totally fine.  All day today, he played as if nothing had happened.  As I studied his behavior, I could not but compare how I would have reacted if this happened to me.  For fear, I would probably stay put and feel “scared” to do anything.  Timothy on the other hand, ran around, laughed and played, not letting his “condition” restrict him in any way.  He just lived, not thinking about anything. 

I need to do that.  Yesterday’s appointment showed his platelet and hemoglobin counts have gone down again.  The good news is that the doctors are still not concerned and told me not to worry.  We are still trying to figure out the cause and to treat it accordingly.  Our CHOC doctors will consult with TCH doctors to figure out a plan.  There’s a talk of steroids again… please, please, please pray that we won’t go that route.  Please.  All I think of are the numbers and the possible causes/reasons for Timothy’s current state.  And it makes me dwell on the unknown, building frustration and desperation.  I need to be like Timothy and just live.  Live today.  One day at a time.  Faith and trusting in God seem impractical when I am in the midst of worry and anxiety.  I have been praying desperately, more like nagging, for Timothy to be fully well.  These transplant hiccups are expected, but hard to accept because you want your child to be THE one who sailed through all the setbacks.  So when things like this happen, I am at a loss.  I think I put on a pretty good front for the most part, but in the quietness of my heart, turbulence and chaos exist.  This past Sunday, I was reminded that I need clarity.  I need to pray for clarity.  What a timely reminder… Thank you.  I will keep you posted.  But in the meantime, I am going to try and live each day to the fullest :).


  1. Kids are amazing, especially Timothy! What a trooper! And you and Daniel are doing an amazing job caring and nurturing your little kiddos. I'm sure it is harder than anyone can ever imagine, but your composure and your transparency and honesty in your writings are truly inspiring. May God really grant you the peace and strength you need each day..."His mercies never come to an end...they are new every morning..."! Big hugs. - Claudia

  2. Poor Buddy! It's so hard to "trust" at times. One of our little friends had similar issues post transplant, although it happened to her within the 6-12 month post range. It ended up being an issue with her kidneys not producing enough of the hormone Erythropoietin (EPO). She had to have a couple months of infusions and eventually her kidneys "woke up" again and she's doing great. May not be what's happening with T, but praying the solution is just as "simple." And that steroids will not be a part of the plan! Happy Easter!!

  3. So hard...thank you for this reminder Alice. I hope that Timothy's blood counts normalize very soon.

  4. I think you can count on your doctor and I hope his blood will be in a good condition too. Have you ever asked your doctor if some kind of arginine could be at help on his condition? I'm not sure but I think you can ask if it will help your son or not.