Timothy’s Donor

Her name is Nazife.  She has a beautiful family.  She has three grown children.  She resides in Germany, but she is a Turk by ethnicity.  Though she lives on the other side of the world, we are connected in a very special way.  She is Timothy’s bone marrow donor.  Her marrow flows through my son’s body and he is able to live a healthy life.  We are grateful beyond words. 

Thank you, Nazife, for donating your marrows to save another life.  What you have done has changed my son’s and our whole family’s life forever.  Your loving sacrifice gave our family hope and joy.  Thank you for making my son’s illness a distant memory for us.  I am sure the journey for you wasn’t easy.  We searched for a year to find Timothy a match.  And you were the ONLY match.  Just you.  No other potentials.  How amazing it is that this is how God orchestrated this miracle!  Thank you and thank you a million times… We hope to meet you one day.  Blessings and peace to you and yours…

Confirmed and Cleared

I received the official word today.  Timothy’s donor is cleared and the transplant is scheduled for February 8th.  He will be admitted this Sunday and start his preparative regimen on Monday.  All of the pre-transplant screening (EKG, chest x-ray, GFR, ECHO, and labs) for Timothy came out normal.  He is in optimal health.  But to be honest, I don’t feel relieved nor ‘excited’.  It’s actually a very strange feeling.  Trepidation and anxiety, mixed with numbness, perhaps?  Or facing the reality of my son’s disease once again?  It doesn’t seem real, but it’s happening this weekend.  Maybe I just don’t know how to release my fear.  The past few days, as we have made several trips to the hospital, I held him a little tighter and closer.  I find myself staring at him a tad bit longer to study his face, his features.  I try to soak in his energy, youthfulness and personality.  I am just trying to hold on to him… fearing the unknown future.  It’s beginning.  And it’s getting hard.  I want to ask one more time, if we are making the right decision.  I want assurance it will turn out okay.

I love you, Timothy, as I have said this to you a million times this week.  Please pull through this without being scathed.

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.

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:

Research Research Research

Frankly, I feel researched-out.  My eyes are tired from pouring over emails and numbers.  I want to sleep, but there seems more I need to find out.  I have talked to different doctors from different transplant centers, mostly in the West Coast.  But I must admit, though it has been very tiring to contact, speak with, and gather information, it has also been very encouraging.  When I contact a center, I try my best to find the director of BMT or immunology and contact them directly.  It’s so much easier to talk to the doctors who have experience and expertise.  And what I have found is that, generally speaking, they are very willing and available.  I have contacted a well-known (worldwide) immunologist at UCSF and right away, she wanted to chat on the phone.  We talked for nearly an hour discussing Timothy’s condition and situation.  I didn’t feel rushed or pressured in any way.  She answered all my questions and had some suggestions of her own.  This has been the experience with all the hospitals and their BMT directors and immunologists.  I have contacted world renowned researchers and the results were the same.  The doctors that I have been in contact with have been compassionate and thoughtful, not just to our medical needs but family, financial and emotional needs as well.  It has been an encouraging experience and I am very thankful.  I do feel like I know a lot about CGD and BMT :).  So if you ever have any questions re: BMT for CGD patients, I am here.  Maybe I will post all my findings on another post, so if there's anyone out there in a similar situation as I am, we can share our knowledge.

Shifting gears…the other day, I took Claire to a pumpkin patch for the first time.  She absolutely loved it!  On our way home, she wanted to know why Timothy couldn’t come.  I explained to her that his body is broken and he would get really sick if he had come.  She was very pensive for a few minutes.  She did not understand why his body was broken.  She wanted him to come with her next time.  I tried explaining to her how we have been trying our best to find good doctors and hospitals to fix Timothy’s body and that it would take a long time to fix him.  I was trying to prepare her for the transplant period.  I started choking up, tears welling up in my eyes as I told her that when he is all fixed, he could go to pumpkin patches with her, walk and breathe in all the hay, go to petting zoos to feed the animals and not get sick.  I don’t think she really got it… But at least she’s developing compassion, sympathy and love for her brother.  Here are some pictures from the patch…

Good Enough

Before leaving for Houston, we had 2 decisions to make.  Do we go through with the transplant with the current potential 9/10 donor?  And if we do, which center do we get this done?  After visiting Texas Children’s Hospital (TCH) and consulting with CHLA, we are convinced that we need to proceed with the transplant.  Though the match is imperfect, 9/10 is good enough.  Our concern was that the mismatch would be a major one instead of a minor one.  And indeed it is a major mismatch.  But clinically, though Timothy appears to be healthy, has had too many infections and symptoms already.  He was diagnosed at 2 months, which is really early.  He has been hospitalized 4 times and he is not even 2 years old.  And one of the main concerns TCH doctors have for Timothy is his bowel inflammation issues.  They say kids with this particular issue tend to have a difficult time with the transplant.  And statistically, to wait for a better match, perhaps 10/10, is very slim.  (By the way, the search is still being done daily to see if there’s a better match.)  TCH has done major mismatch transplants for CGD patients with great success. 

Now the question is where?  We have consulted with two centers so far: CHLA and TCH.  I have spoken to the BMT doctor in UCSF and am waiting for responses at UCLA and Stanford.  I will also be looking into Seattle as well.  All these places were recommendations from either CGD families or a CGD expert.  Texas is a huge potential… but it’s out of state.  When we think of the logistics, it gets pretty tough.  To go through a BMT is a long process.  We would have to be near the transplant center for at least 4-6 months.  There’s so much to consider… finances, family and friends support, and church support.  I know it’s going to be a difficult and long journey.  And I worry about Claire, how she’s going to handle all of this.  We need to make a decision soon. 

I am thankful for God’s leading and guidance thus far.  But I do dread the BMT future. 

Possible Match?

Last night, I emailed our BMT coordinator to ask if there have been any possible matches for Timothy.  I haven’t heard from our coordinator in a while, so I like to check in time to time.  She emailed me this morning.  There might be a possible match…  She is going to review this information with the BMT doctor to confirm.  Hopefully, I will hear back from her tomorrow.  Can this be it???  My heart is racing just thinking about the possibility.  Would you pray for us tonight?  That this may be Timothy’s chance at a healthy, normal life? 

The coordinator thought I may have ESP :).  Maybe… or just mom’s intuition/gut feeling… Thank you, Lord, for this hope.

Some Updates

It has been quiet and mundane.  Many of you have been asking if we have heard any good news re: the bone marrow match.  We have had several drives already and more are scheduled, but from what I understand after one registers to become a donor with all the processing time, it takes about 6-8 weeks before we’ll know anything.  Also, if Timothy finds a match, we will not know the identity of the donor until a year after transplant.  It’s the policy.  One year post-transplant pretty much confirms being cured and being free from any dangers of infections and complications.  But so far, no news.  I do get anxious time to time, but because we are entrenched in our day to day lives I don’t have the luxury to dwell on the unknown.  It’s a good thing.

I have also been inquiring other reputable hospitals/research institutes for consults.  We are still unsure about where we would have the transplant.  As of now, it’s here in L.A., but we are thinking about Children’s Hospital of Texas in Houston.  They have done the most CGD transplants at 14.  And all have been successful.  The only thing about doing it in Houston is, we’d have to relocate for about a year…  It’s a huge decision and we need a lot of prayers.  But again, all this decision making is moot unless Timothy finds a donor.  It would be wonderful if he were to find a match and be cured.  I get teary-eyed just thinking about it.  Again, I remind myself this is in God’s plan and control.  How would I even get through this without this hope in God?  Impossible.

Early August, we sent Timothy’s blood to NIH for further testing.  According to the chief Infectious Disease doctor, Timothy’s case is ‘interesting’ and his mutation is ‘a bit funny’.  If I didn’t mention it before, Timothy’s mutation is novel.  The results take about 6-8 weeks.  I have heard they freeze his cells and multiply them to do many tests.  Some for prognosis and some for research.  I am eager to find out the results.

Lastly, I found out last month I am a carrier of CGD.  It was a big surprise to me.  Our family has no known history of CGD, so I thought Timothy’s case was a spontaneous mutation.  Well, it turns out, I gave it to him.  I am not sure how I feel about this.  Claire also needs to be tested to see if she is a carrier.  This knowledge impacts many future plans and decisions for all of 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.