Happy Thanksgiving!

Day +392 Thanksgiving Day

On this Thanksgiving day, I asked Victoria what she's thankful for. Her answer went beyond my expectation and my heart was filled with gratitude. She said, "among many to be thankful, I'm most thankful to God for giving me the perfect bone marrow donor to cure my Aplasitc Anemia". What a heartwarming answer!!! Today, she defined our version of "Being Thankful". I hope that she continues to grow to live on this spirit that in our lives, giving thanks will be never enough.   Everyone, happy Thanksgiving!

On a side note, I made a phone call to our BMT program manager, Kristy Applegate to get in touch with our donor.  ICYDK, the patients who received bone marrow transplant from an unrelated donor have limited information about their donor at the time of transplant. After transplant, contact between patient and donor will depend on Be The Match confidentiality policies and the policies of other countries. In many cases, contacting donor is possible after a waiting period of at least one year. We've waited and it's time to contact our donor. Can't wait to be connected with our hero. 

Port replacement surgery

Day + 375
Port replacement surgery - out patient

Last week, Ms. Katie (BMT Nurse Practitioner) called me with the results of 1 year evaluation. Thankfully, most of tests came out normal: ECHO(even better than a year ago), thyroid, PFT(pulmonary function test), IgG & IgA. However, the MRI scan showed that her Ferriscan (iron concentration within liver) was way too high: normal for her age is around 5, hers was at 37.  I kind of expected this result because Viki had received way too many blood transfusions for 1.5 years prior to her BMT and as a result of that, her iron level is at where it is.  Interestingly enough, there is no natural way of getting rid of the iron in our body. There needs to be a external help of getting rid of it.   I was hoping that we would be able to remove her port by 1 year mark post transplant but, it turned out to be opposite. Viki will need to have her port replaced with a new one so she can  continue with monthly phlebotomy. According to ferritin specialist, she will need at least an year or two of monthly phlebotomy to bring her iron level down to a normal range.   What a disappointment!! I thought we were so close to being back to normal but, it looks like we will be in this dilemma for another year or two. Viki will also continue aerosolized pentamidine for Pneumocystis prophylaxis. She will not begin post-BMT re-immunizations at this time because she is still taking cyclosporine. She will start post-BMT re-immunizations once she is off immunosuppressants for 3-6 months.

Viki had 2 surgical procedures done on 11/11/13: Removal of previous port and inserting a new one (at a different location of her body).  The reason for the port replacement was that Viki had her port placed when she was only 3 and naturally, as her body grew, the catheter was stretched at her main artery to the point where extracting out her blood during the phlebotomy was getting impossible.

Dr. Parker removed the old port in middle of her chest and inserted a new one around her left shoulder near the main artery.

 I've never seen Viki cry this much after a surgery. Maybe it's because she had two big incisions this time.

I was so heart-broken. My poor little baby.

We've tried everything to make her feel better: pain medicine and even with popsicles.

 

As far as Viki's eczema goes… the magic of Elidel cream didn't last long.  Rash comes and goes, even goose skin is accompanied by rash.  Looks itchy and blotchy. Now I understand why they call this a CHRONIC atopic dermatitis. Obviously there were moments where I was getting upset about all the recent issues but, I'm forcing myself to look on the bright side. Just hoping and praying that she will grow out of it.

Happy One Year of New Life

Day +365

Today marks one year since Viki had her life-saving bone marrow transplant. (we consider this day as Viki's 2nd birthday) : A chance at a new life.  A NORMAL life. It has been an extremely challenging year on so many levels yet, Viki made it. We all made it.

Thank everyone involved for their love, support and prayers during the past year.  Simply put, we couldn't have gone through it without all of you.

Today was full of mixed emotions.
Sometimes, I look at Viki and think to myself about how much farther we have to go to get her completely back to a normal life. During her battle with Aplastic Anemia, her life was consumed with medical appointments and procedures while her friends and peers were enjoying their lives and growing up normally. She couldn't relate and didn't know what it feels like to be a kid because she never had the opportunity.  We felt isolated. It crushes to think of what she has missed as a 6-year old but, when I think back about how far she has come, I'm so proud and glad that she was able to make it this far. So, you can imagine how happy we are to celebrate this very important anniversary. She's a fighter!

One important lesson we've learned through her journey was that life can change in an instant. Our lives will never be the same, however, in some ways, it has brought us closer and made us better. We won't take anything in life for granted and we won't stress over the minor things in our precious life.  Just love more, give more, and laugh more and, take more pictures and remember the important thing in life!

A year ago and now...
A year ago, she belonged to me. And now, she is reborn and her life belongs to God.
Thank you God for allowing me to bring up your precious daughter!

 

딱 1년전 오늘이 바로 우리 승리가 life-saving 골수이식을 받은 날이다.

사진속에 보이는 저 작은 비닐백속에 생명을 살리는 힘이 있었다니...

얼굴도 이름도 모르는 우리딸에게 골수를 기증해준 이름모를 도너야말로 하나님의 귀한 자녀일거라는 생각이 든다. 기증한 몸의 회복은 물론 천국에서 누릴 상급을 이땅에서도 누릴수 있도록, 앞으로 그분 인생의 모든곳에서 하나님의 손길이 같이 하기를 간절히 기도한다.

이제 겨우 6살, 그 짧은 일생의 절반을 이 병마와 싸우는데 보내고 있는 우리딸 승리, 생각만으로도 나는 벌써 눈물이 흐른다.  그 어린나이에 얼마나 힘든걸 참아 왔는지, 얼마나 많은걸 단념했어야 했는지, 또 얼마나 오랫동안 기다려 왔는지... 하지만 그 누구도 원망하지 않은채 혼자서 넉넉히 감당해냈던 찬란한 이름 그대로 이 싸움에서 멋지게 승리한 나의 영웅 최 승리.
작지만 큰아이, 어리지만 어른스러운 아이, 약하지만 강한아이, 몸은 아팠지만 더 건강한 마음을 가진 아이... 이런 승리이기 때문에 나는 항상 좋은엄마라는 찬사를 받아왔지만 사실은 그 모든 credit이 내것이 아니라 우리 승리의 것이라는걸! 우리딸 승리이기 때문에, 너무도 부족한 내가 좋은 엄마가 될수 있었다는걸 너무도 감사한다.
나는 믿는다. 그동안 우리 승리가 인내로 참고 견뎌온 연단의 시간들이 내가 부모로써 남겨줄 그 어떤 재산보다 우리딸에게 더 귀중한 유산이 될것이라는걸.

"내 딸 승리야, 너무 장하고 고맙고 사랑한다. 오늘 이 1주년을 같이 축하할 수 있어서 엄마는 너무 행복하단다."

마지막으로 이 모든것을 가능하게 하신 하나님, 너무도 보잘것 없고 형편없는 나를 미약하나마 기도하는 엄마로 살게 해주신 하나님!! 감사 외에는 그 어떤말이 있을까?
그저 고쳐달라고 채워달라고 떼쓰던 철없는 기도에서, 이것도 하나님 뜻이라면 어떻게든 감당하고 이겨낼수 있게 해달라고 내 기도의 방향을 순종으로 바꾸어 주셨다.

오늘 이 기쁜날, 우리 세식구 잠시 일상에서 벗어나 서로에게 상급을 주듯, 신나게 재밌게 또 맛있게... 마치 천국을 사는것처럼 하루를 보냈다.  하나님, 감사합니다!