Day +101

Thanks to our friend, we had a small celebration today :).  This is the first time Timothy is blowing out candles… listen carefully as he whistles each time he blows :).  Cute.

Day 100 (part 2)

A while back, I posted Claire and Timothy’s catechism Q/A.  Here’s the latest progress…

For Timothy, there hasn’t been much :).

This is Claire :).

Day 100!!!

Today is a very special day.  God has led us through and Timothy is on his way to recovery.  We are thankful and feel truly blessed.  This is yet another huge milestone in the BMT world.  As each day passes, there’s a fewer chances of Graft V. Host Disease, at least the acute kind.  There’s still a chance of chronic GVHD, even up to 3 years post transplant.  It’s been 100 days since Timothy has been CGD-free. 

Here’s Claire’s congratulatory remark to her brother, Tim :).

In addition, we have received a card from our donor this week.  It brought so many emotions reading the card and having this communication with the donor.  Timothy has a second chance in life because of this donor.  Thank you.  If you are not on the registry to become a bone marrow donor, please do consider being on the registry.  It only requires a cheek swab and some paper work.  You may be the one to save someone else’s life and give their family hope.  We are so thankful and humbled to be in the receiving end.  For more information, go to A3M website to order an individual kit.

Here are some pictures from today…

Enjoying lunch:

Day +91

“Trust in the Lord with all your heart and do not lean on your own understanding.  In all your ways acknowledge Him, and he will make your paths straight.”  Proverbs 3:5-6.  I read these verves today and what a comfort it brought to my soul!  To trust, to not rely on self, to acknowledge… it brings freedom and liberality.  It takes the burden off of me.  My kids trust me to provide them with all their needs and I in turn trust God to provide for me with all I need.  Life is bearable.  It is satisfying beyond my understanding.  I was created to depend and trust and not do things on my own.  This has been an ongoing lesson for me, especially through our experience with Timothy’s sickness and healing.  Some nights, I sit back and sort through the past 2 years of memories.  There have been some heart-wrenching times.  But these days, there are a lot of joy and laughter.  To see my son healthy and happy is incredible.  I often wonder how this experience will affect our lives in the future.  Only time will tell. 

It is day 91.  Though next week we will hit day 100, realistically, we will be home early June.  Timothy’s doctor wants him weaned off the steroids before we leave.  We decreased it a bit again today.  We had a repeat chest x-ray and it is normal :).  He is still 100% donor cells :).  We are excited to go back home soon, yet sad to leave Houston.  We have met so many wonderful people here.  There are many things to take care of before we leave, but unlike my usual self, I haven’t been concerned with all the planning.  It will all work out.  Upon our return, we will continue our post-transplant care at CHLA (Children’s Hospital L.A.).  I was anxious about going back, but I was reassured Timothy’s current doctor knows the transplant doctor in CHLA.  What a relief!  We will continue to follow-up with TCH (Texas Children’s Hospital) every few months than eventually annually. 

Though 100 days will be a big milestone, Timothy will have to be very careful for about a year.  That means he will still be in social isolation for a while even when we return home.  Please continue to pray for us as we prepare for the next phase of Timothy’s health and recovery. 

Day +84

Timothy had clinic on Monday and today.  His counts are still looking good.  The steroids are being slowly decreased.  Timothy is very sensitive to dosage changes.  He has been having difficulty sleeping :(.  When he gets off the steroids, all the side-effects cease.  He did develop thrush (yeast infection in his mouth), but other than that everything is going well.  We are mentally preparing to move back.  I don’t think we will be back exactly on day 100, probably a little after. 

Here’s what Claire’s been up to :)…

Day +80

I cannot believe it’s day +80 already.  It’s been awhile since I last updated.  Timothy has been feeling better and doing well.  He’s feeling more like himself :).  So consider no news as good news :).  This past week, we had some visitors and it was so good to hang out again… We really miss people and it was timely and needed for our family.  Both Claire and Timothy were smiling ear to ear :).  I think they miss hanging out with other people as well.  Thank you ET and PW for your visit!  We were encouraged beyond words and are thankful for your love and support for our family.

Here’s a video clip of Timothy having fun with our guest:

Please continue to remember us in your prayers.  As Day +100 approaches, I have mixed emotions as we prepare for our next phase of recovery.  A bit of relief, gratitude and uncertainty… Changing hospitals and doctors bring a bit of anxiety on my part.  I hope and pray that Timothy will recover without any more complications. 

Day +71

Timothy has been eating like a monster.  This is a side-effect to the steroids he is on.  For instance… he woke up this morning crying for food, then ate 2 waffles and 1/2 an orange.  At about 10:30 am, he again was demanding food and ate 3 slices of bread and nutella.  For lunch, he ate a bowl of rice with meat and veggies.  After nap, he had 2 bowls of ice cream (I stopped him after the 2nd bowl).  He was excited for dinner and ate a normal amount.  Right afterwards, he had a bowl of grapes and another slice of bread and nutella.  As I tucked him in for the night, he asked for food (he does this every night) and I reassured him that I would give him food tomorrow morning.  Constant eating… keeps me definitely busy.  Another side-effect to steroids is irritability and crankiness.  He is having a hard time accepting “no” from me or from anyone these days.  Hopefully, this will pass soon. 

Here are some things Timothy is into these days… he is into saying “no, thanks”.  For example… me: Timothy, let’s change your diaper? T: no, thanks.  me: Timothy, give me a kiss? T: no, thanks.  me: Timothy, share your toys. T: no, thanks.  He also likes to say, “no way” these days.  He loves his doctor and says his name daily.  During one of our clinic visits, he saw Dr. Krance from afar and started calling out his name and ran towards him pushing open the glass door :).  He enjoys reading books, playing on the iPad, and watching Elmo.  He is up to catechism #3, sort of.  And loves “Jesus Loves Me this I Know” song.  He insists on singing it every night for family worship.  And he loves to cuddle :).

As for Claire… she LOVES watching animation (that’s what she calls it) and can be on the iPad for hours, if we let her.  She likes to “watch” XBOX/Kinect.  She says it’s too hard for her.  Claire is VERY dramatic, especially when she gets hurt (usually a very small scratch).  She has a very low tolerance for pain.  It’s almost comical to watch :).  We are working on catechism #33 now.  Claire enjoys inventing new songs, stories and pretend playing.  And says she LOVES her brother, Timothy.  She is very verbal and enjoys people.  She still loves to read and tries to sound out words.  And like Timothy, she enjoys eating and snacking all day long.

As I was looking through some pictures, I found the below picture.  Taken right before we left for Houston.

Timothy before he started treatment, enjoying his last outing in January.

This picture was taken today at the clinic.  He looks so different…