Day +169

It’s been very busy past 2 days since we arrived on Tuesday.  And yes, we are HOME!  It’s a bit surreal.  Everything is familiar, and yet there’s a feeling of disconnectedness.  It’s as if we’ve never left, but at the same time I feel like we lived a lifetime in Houston.  The comfort of our own home we have embraced very quickly.  And simultaneously, we miss our “home” in Houston.  It was quite emotional leaving our home of 7 months behind.  All in all, we are grateful.  Grateful for Timothy’s health and progress, grateful for a safe flight home and grateful for our wonderful friends both here and in Houston.  Now, we begin our next phase of BMT recovery journey.  Timothy’s care will be followed by the BMT doctors in CHLA.  We have our first appointment tomorrow.  I am really dreading the L.A. traffic :(.

Here are some pictures… Timothy was super excited to go on the plane :).

He was a trooper in wearing the mask the whole flight!

By the time we landed, he refused to be strapped in the stroller and insisted he walk.  And yes, it’s a princess luggage :).

And to our great surprise, we were greeted by our wonderful friends at the airport… all of us were really shocked to see everyone.  THANK YOU for coming out and making us feel so loved and special.  Though Claire didn’t express it outwardly, I know she was REALLY happy to see everyone :).  You guys are the BEST!!! 

And when we came home… more balloons and signs and goodies… We are overwhelmed by our church’s generosity and love.  THANK YOU, NLMC!!!

Life in Houston

We are pretty much settled into our new home, new city.  I am acclimating myself to nearby areas, markets, streets… We took the metro several times to visit the museum.  And today I took the kids to the library.  Kids love going on the “train” (metro) and visiting new places.  It’s nice to just hang out and figure things out together.  I find people here to be friendly :).  Since I am not at “home” and do not have all the responsibility of being at home, it’s been a slower pace.  More time spent with family and enjoying (more or less) each other.  It’s been nice in many ways.  Timothy has an appointment tomorrow.  Maybe we’ll find out more of his schedule. 

Here are some pictures of our place:

The chair you see left of C is where Daniel’s desk is and where he works.

My favorite thing about this place is the washer/dryer inside the apt. :).

The kids and I sleep in the room and daddy gets the sofa bed :).

Here are some pictures from the children’s museum.  Did you know that through Travel Passport Program this place is free for us?  We have membership at our local children’s museum back in CA and it allows us to use our local membership here in Houston.  How awesome is that!

Timothy LOVES cars these days…

But when given a choice, he will still pick food over anything.  He sat here for 15 min. or so just eating his snack instead of playing.

Temporary Set Back

We received news today from our BMT doctor here in Houston re: the transplant procedure. These were his words, “It’s not good, but it’s not bad.” NMDP (National Marrow Donor Program) informed us that there's a delay in the process for about a month. But no promises, of course. From our doctor’s experience in situations like this, NMDP would tell us right away if the delay is permanent or not. But when they do give a time line of some sort, then it’s usually a good potential but just delayed. So… what do we do now? We just wait. Our doctor here wants to see Timothy weekly to make sure everything’s okay with him and will check with NMDP weekly of the progress. We will not be doing the pre-evaluation for the BMT until we get closer to the collection date. It looks like the earliest we would be admitted would be February. The Songs will be hanging out in Houston for a month. I am okay now. It was frustrating and difficult this morning. But I am so thankful our family is here together. On a side note, we may move tomorrow to a different housing facility. Will update tomorrow. Please continue to pray for us…

Uncertainty Again…

We made it.  It has been a whirlwind the past two days.  We arrived safely Monday evening.  And today, it feels a little bit settled.  I have to admit, it was a bit of a shock when we walked into our new living quarters Monday evening.  I didn’t know what to expect since I have never lived in a furnished place.  The clean-freak in me reacted.  So the next day was spent ALL day cleaning (after we made our trip to Target and purchasing needed cleaning supplies).  My only regret… not bringing/purchasing a mask.  The toxic fumes nearly knocked me out.  Really.  Anyhow, it’s clean now :).  Thank you, friends and our home church for the Target gift card… we spent it all :). 

Today we had our first appointment.  We spent 4.5 hours at the hospital.  Timothy did great with the doctors and the check-ups.  Only thing he had a hard time with was the blood draws.  They had A LOT of tubes, meaning they needed A LOT of blood.  Of course, Timothy is a hard stick.  They poked him 5 times today.  He was hysterical.  We also received some questionable news.  Right now, the donor is in the process of getting screened and tested to make sure they are in optimal health.  Well, there might be some health concerns… we will know more tomorrow morning as to what this all means.  Please pray for the donor, that all will be well…  It’s unsettling not knowing what’s going to happen. 

Other than that, if all checks out, Timothy will undergo at least 2 full days of evaluation.  This includes IV lines and being NPO (not being able to eat).  It’s going to be tough.  Claire seems to be doing OKAY.  She’s definitely bored and starting to act up a little.  Daniel and I need wisdom as we handle everything including parenting our kids. 

Here are some pictures from tonight at our place:

Upcoming Dates

We leave in 10 days.  I have not packed.  Nothing is prepared.  We are just going.  But we do have good news… we have found temporary housing (while Timothy is hospitalized).  We are hoping to move to a more suitable place when Timothy gets discharged maybe in February or March for the whole family.  So we at least have an address to go to when we get there. 

Some important dates…

December 19th (Monday) – Timothy’s donor will be health screened.

December 26th (Monday) – Our family will be relocating to Houston, TX.  Staying at Aishal House for at least 2 months.  It’s affordable, furnished and close to the hospital.

December 30th (Friday) – We will get the results of the screening, whether or not the donor is cleared to donate.

January 8th (Sunday) – Timothy will be admitted to TCH to start his preparative regimen.  It will be an intense chemotherapy treatment to get rid of his current defective immune system.  (Between Dec. 28th until Jan. 8th, Timothy will be evaluated for the transplant as an outpatient.)

January 18th (Wednesday) – BMT/infusion.  Timothy will receive his new marrow.  This day will be considered DAY 0.  It usually takes about 3 weeks for the marrow to grow and we will know then if his body has accepted the new marrow.  Typically, BMT patients are in the hospital for about 6-8 weeks. 

End of February – Hopefully, we will be discharged by this time and living in a different housing.  We will have to be close to the center for at least 100 days post transplant.

End of April – This would be 100 days post transplant.  If there are no complications and side-effects, this would be the earliest we would come home.

Above schedule is a textbook schedule.  We hope to be just that… or better.