We Did It!

This past Saturday, our family participated in our first walk/run with some good friends to raise awareness and to celebrate Timothy’s recovery.  Here are some pictures:
November 22, 2014 Long Beach, CA (Be The Match Walk 1K)


Below is a photo of donors and patients attending the walk. 

All the kids…They were so excited!  It wasn’t a walk for them, but more like a run.




All of us…

“I found my match.” Love this.

New Proposed Dates

We had another appointment today.  We have some news.  Everything is not in the clear yet, but NMDP gave us proposed dates for the transplant.  As of now, Timothy will be admitted on January 29th.  He will then undergo intense chemotherapy treatment.  And on February 8th, he will receive his new marrow. 

His pre-transplant work-up started today.  He had a chest x-ray and EKG done today.  This Friday will be GFR (this measures kidney function) and it will be an all day event with IV line and all.  Next Monday will be the dreaded NPO day :(.  He will be sedated for Echocardiogram (a sonogram of the heart).  It is scheduled for 2:20 pm and nothing to eat after 7 am…  So here’s my plan: wake Timothy up at 6:30 am and feed him a LARGE breakfast, otherwise, I don’t think he will survive.  Another appointment on Wed. and PICC placement on Friday of next week.  And that’s it.  Sunday following he will be admitted. 

I feel overwhelmed once again.  I was getting used to just hanging out in Houston without much worry :).  I pray every night that Timothy’s BMT will go smoothly without ANY complications.  But I do get scared and doubts flood my mind and heart once again.  God’s in control, right?  Right.  I must believe.  I have too.  I will keep updating.  Thank you for your prayers and support. 

Spread the Word

Timothy had his appointment today.  It was very brief.  Timothy has been very healthy.  No bowel, skin, or other issues.  He’s been active, playful and fun to be around.  Doctors were pleased with his health.  But still no news.  We won’t know the donor status until late January.  In the meantime, we just wait.  I asked about the search, if there were any other potential donors.  None.  As I have mentioned before, Timothy’s HLA type (this is what they use for bone marrow match) is very rare.  We were warned from the beginning that it would be very difficult to find a perfect match for Timothy.  HLA types are ethnicity-specific.  Therefore, there’s higher chance of finding matching donors from the same ethnic group.  We need more Korean donors.  We need more Asian donors.  We need more donors.  Would you consider registering for the registry, if you haven’t already?  Would you consider spreading the word to people you know?  It’s as simple as registering on online and sending in cheek swab samples. 

http://www.asianmarrow.org/index.php/donor/order-an-individual-kit

Or if you would like to organize a drive:
http://www.asianmarrow.org/index.php/donor/how-to-host-a-drive

If you are a part of an organized group, organizing a drive would be the most efficient way to get more donors.  If you are interested in doing this, I can connect you to my contact person to organize the drive.  A3M will do all the work, you just need to get permission to hold the drive.  Please contact me if you are interested.

Weekly Appointment

We had an appointment today with Timothy’s BMT doctor.  No news.  We will see the doctor again next Wednesday.  The doctors want to monitor him and make sure Timothy’s doing okay since we can get the call anytime re: the donor and the transplant procedure can begin anytime.  Right now, we need to make sure Timothy does not get sick.  From last week’s labs, everything looks great.  He’s been very healthy :).  What I found out today is that the search is now open again.  We are looking for possibly another good match just in case. 

We want to thank you for your prayers and your love towards our family.  It’s been tremendous.  We humbly ask for continued prayers as we wait.  We need patience, wisdom, strength, and faith.  We miss you all dearly. 

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…

Pleading for Help

As you know, my son needs a bone marrow transplant.  The reality of it all is too much to grapple and understand.  I believe what I see.  And what I see daily is a healthy-looking boy who loves to eat.  But at the same time, I am reminded daily of his dependence on prescription drugs and not so apparent symptoms which clearly show his imperfections.  Recently, he seemed to have some G.I. upsets again.  Diaper rash, explosive poos, waking up early and being in a foul mood…it’s exactly the same as last time when he had bowel inflammation.  Neither time was he diagnosed, but I am learning how to read his symptoms.  I have also been a little paranoid as of late.  Leaky air conditioner, wet carpet… feeds my too imaginative mind of mold growth and the dangers thereof. 

When this journey began, I vowed Timothy’s illness will be unto His glory.  I didn’t know how, but I wanted it to be my goal.  These days, much guilt has overwhelmed me and clouded my purpose.  It’s hard.  I am feeling lost. 

I have been on a mission, more or less.  From my previous posts, we have gone “public”.  Our contact from A3M has also been working with Korean T.V. and radio stations, hoping they will air Timothy’s story.  I have been brainstorming who I can ask to host bone marrow drives.  So here it goes, if you are willing and able, would you consider being a drive lead?  This is how it works.  If you are a part of an organization or any gathering of people, you can help out by being the drive lead for Timothy.  Let me know if you or anyone you know are interested and I will email your info to my contact at A3M (part of NMDP) and they’ll set up the drive.  If you don’t live in So. Cal, don’t worry, they can do a remote one by training you.  It’ll be a little bit more work on your part, but I hear it’s not difficult.  It just requires a little bit more commitment and time.  Please help, if you are able.  It would be incredible if Timothy found his match through one of these drives.  Thanks for reading.   

English Version

Korea Times Los Angeles published the English version of the article today.  My apologies for the ghetto copy.  I could not, for the life of me, find it on the web.  Please consider joining the registry, if you haven’t already.  There are many out there who need BMT to live. 

Going Public

Below is the article published today in Korea Times (L.A.).  We have decided to go “public” in search for a donor for our son.  Our contact from A3M is in the process of contacting other newspaper, radio and TV stations to get the word out.  We are targeting the Korean community since Timothy’s match will most likely come from a Korean. 

 

“희귀질환 고통 받는 한 살배기 티모시에게 희망의 골수 기증을”

2011-06-22 23:50:46

희귀 질환을 앓고 있는 한인 어린이가 한인 골수 기증자를 애타게 찾고 있다. 태어난 지 2개월 만에 희귀 질환인 ‘만성 육아종성 질환’(Chronic Granulomatous Disease) 진단을 받은 한인 티모시 송(1세·사진)군은 골수이식을 통해서만 이 질환을 치료할 수 있다.

특히 송군은 매우 희귀한 형태의 인간백혈구항원(Human Leukocyte Antigen)을 갖고 있어 전국골수기증협회가 보유하고 있는 골수 기증자들 중에서는 아직까지 일치하는 샘플을 찾지 못하고 있어 주위를 더욱 안타깝게 하고 있다.
송군에 맞는 골수 기증자를 찾기 위해 동분서주하고 있는 아시안골수기증협회의 조형원씨는 “인종과 민족에 따라 유전인자가 유사성을 띠고 있어 송군에게 맞는 골수를 찾기 위해서는 한인들의 골수 기증이 무엇보다 중요하다”며 한인들의 골수 기증 동참을 호소했다.
조씨는 “많은 한인들이 골수 기증에 막연한 두려움을 갖고 있으나 이는 편견에 불과하다”며 “마취 상태에서 골수를 채취해 통증을 느끼지 않으며 마취가 풀린 후 약간의 뻐근함을 느끼는 정도”라며 안타까워했다. 최근 골수이식은 기존의 직접 채취술보다는 간편한 조혈모 세포 채취술(PBSC)을 사용하고 있어 골수 채취가 더욱 간편해졌다.
어머니 앨리스 송씨는 “한 살밖에 되지 않은 티모시가 크고 작은 질병에 시달릴 때마다 부모로서 가슴이 매우 아프다”며 “하루빨리 티모시와 유사한 골수형을 가진 기증자가 나타나길 간절히 바라고 있다”고 한인들의 도움을 간절히 호소했다. 송군이 앓고 있는 질환은 면역체계에 이상을 야기해 크고 작은 각종 질환들에 시달릴 수밖에 없다.
골수 기증을 위해서는 등록을 먼저 해야 한다. 등록을 원하는 한인은 아시안 골수 기증 협회(www.a3mhope.org)에서 간단한 동의서를 작성한 후 구상세포 채취를 통해 골수 기증 등록을 마칠 수 있다.

 

A Quick Update…

On Friday, I received a letter from NMDP (National Marrow Donor Program) stating the search has begun for Timothy’s BMT (Bone Marrow Transplant).  Today, I confirmed with CHLA (Children’s Hospital Los Angeles).  Our insurance has FINALLY approved the search, the work up and the transplant procedure.  The whole deal!  After stalling and giving us the run around for 7 months, with two simple words “legal action”, the insurance company decided to approve it.  The search is on.  I also spoke with our BMT coordinator and she informed me that there are some possible matches.  Since the registry’s database does not have the complete HLA typing, they requested more blood work from the possible donors.  But she also mentioned that Timothy’s particular HLA type is not a very common one and she didn’t think he would find a 10/10 match.  I felt another surge of anxiety today. 

We are also in the process of getting a third consult on Timothy’s condition and BMT option.  Dr. Steve Holland (with NIH) is THE guy for CGD in the nation.  We are in contact with him.

Please pray for us.  We need His guidance and peace.  BMT is a huge procedure with many risks.  We want to be at peace knowing this is His will for Timothy.  And also for the 3rd consult… we need a confirmation either way for the BMT.  And lastly for a 10/10 match and nothing less.  

Be the Match

Several people have asked how you can join the registry.  For those of you who are interested, here’s how.  Register here.  It’s a very simple process.  And please consider donating.  It will help off set the administrative costs.  Right now, we are still in the process of appealing with our insurance company.  But there are so many patients who are in need of a bone marrow transplant.  Please consider joining if you haven’t.  You may be a match to give someone a second chance in life.  What great gift you can give someone…