Day +60
New Year's Eve

2012 tops our list of the most memorable year of our lives (good or bad).  Been through so much that we will never forget 2012.  The tremendous love and support that we have received throughout this ordeal made us strong and kept us humbled dealing with tribulations.  And now, as the year comes to an end, we are beginning to see the light at the end of the tunnel sort of speak.  I hope and pray that 2013 will bring us much more happiness and healthy Victoria.  We thank all the people that was involved with us in 2012 and wish you all a Happy Happy New Year!

A message from Victoria to all of you. Happy New year!

Day +56 Clinic day
Day +55 CVL removal surgery

Recap on clinic visit

• WBC: 2.91
• HGB: 9.4
• Platelet: 193
• No medication changes, continue all current supportive care

Most BMT patients keep their central lines for several months after the transplant but Victoria was cleared to have it removed on day 55 post transplant. I was thrilled about her speedy recovery and knowing it's simple surgical procedure.  But as a parent, it was nerve wrecking for sure. Also, Victoria has not been herself in the past week: headaches, tummy aches, feeling tired and sleeping earlier than normal, feeling warm.  I addressed my concerns to her doctors and surgeons and they assured me that there wasn't any reason to postpone the surgery.  I just prayed for a successful surgery and a peace of mind.

Just before the surgery

Waking up afterwards. Surgery took only 30 min including anesthesia

 "eating popsicle is the best part of surgery" Viki said

Surgeon had to make two incisions because the lines were broken and placed too high.

The upper stitch couldn't hold and it bled overnight.  I panicked and called the ER at 4:30 am and they said it would be okay to wait until the morning since it wasn't bleeding heavily.  Glad that we had a clinic appointment at 9 am.

 Taking off the dressing and putting the sterile tape was so painful.  Looking at all the scars on her tiny chest and her crying, broke my heart.

Viki had a rough day but, all done and cleaned up!

One of the reasons why I write this blog is to have Viki achieve a sense of understanding.  I want her to read this blog when she grows up and never forget what had happened in her early life.  So this way, she would have a positive perspective on life and truly appreciate the value of "normal" life.  I can picture myself in 10 years, telling Viki a story of her central line days.

This was what the CVL looked like

Perfect pajama to put the lines when she slept. She rolled over a lot.

Bathing her was a big hassle and work. We literally wrapped her torso like this every day. Huge thanks to daddy and Press n Seal for keeping her dry while bathing.

Home-care supplies for weekly CVL care

Mommy became an expert in line flushing, cap changing, skin site cleaning and dress changing.  We're so proud that we took good care of CVL without any infections.

The CVL was part of her body for the past 61 days.  It always stuck out of her clothes and hanged. Viki told me this morning "I was habitually looking for my lines, they're gone now".

Good-bye! 

Day +54

 

Merry Christmas from Choi family

Wishing you all a Christmas warm with health and happiness!

Viki's forever Grandma-Santa.

 

We received early X-mas gift from God & our donor this year.  It was much more than what we could have asked for but, our family insisted on sending gifts. How sweet!!

 Overwhelmed with X-mas gifts. Thanks to you all!

Everyone, Merry Christmas!

 A white Christmas

  Much love, from Victoria

 

 

예수 그리스도의 나심은 이러하니라: 아들을 낳으리니 이름을 예수라 하라 이는 그가 자기 백성을 그들의 죄에서 구원할 자이심이라 하니라 (마 1:18~21)

 

우리를 위해 이 땅에 오셔서 우리 가까이 계신 예수님, 우리의 죄를 사하여 주시고 우리 대신 찔림을 당하신 그 보혈로 우리 승리에게 새생명 주신 예수님의 사랑에 평생 보답하면서 살겠습니다. 주님, 사랑해요!

Day +50
Clinic day
Line flush

Recap on clinic visit

• WBC: 3.50
• HGB: 9.6
• Platelet: 203
• No medication changes, continue all current supportive care

Due to weakened immune system, most hemotology/bmt patients need to receive "Pentamadine" to prevent lung infection on a monthly basis. Victoria used to get this pentamadine through her IV before the BMT.  Today, we tried the aerosolized pentamadine for the first time.  Procedure took place at Respiratory (PFT) Dept.  It was challenging but, quicker and much more fun.

Ms. Krista giving Victoria inhalation aerosol

Pentamadine is inserted into the Nebulizer and Viki inhales the vapor.

Viki didn't like it because it didn't taste like candy.

But, she was really concentrating towards the end.

 Ms. Krista okayed Viki to spit out if she needed to

Good job!  It took only 30 min.

 

The most fun part was picking the reward

Thank you, Ms. Krista for taking good care of Victoria today. See you next month!

We can't leave the clinic without stopping by the gift shop. So spoiled!

A surprise X-mas gift from New York.

Day +47
Clinic day
CVL dressing change/line flush/cap change

Recap on clinic visit

• WBC: 3.07
• HGB: 8.8
• Platelet: 165
• Continue all current supportive care
• -hold Fluconazole & Bactrim: liver enzymes are bumping up (AST at 157, ALT at 189)
• -kidney number is back to normal range (Creatinine at 0.6, BUN at 21)
• -potassium level is back to normal range (5.4), continue Lasix

Home away from Home

Atlanta Ronald McDonald House Charities - One of best McDonald Houses in the nation

Atlanta Ronald McDonald House Charities, Inc. (ARMHC) is a non-profit organization dedicated to serving the needs of children by providing temporary housing and support services to families during the worst crisis of their lives.

 

A new, state-of-the art 50-bedroom Ronald McDonald House to serve patients receiving treatment at Children’s Healthcare of Atlanta at Egleston opened in June 2008 on Gatewood Road.  In four years this facility has served over 4,500 families.

At the Ronald McDonald House, families can enjoy many of the comforts of home, receive nutritious meals prepared and served by volunteers and obtain emotional support through contact with other families experiencing similar situations. No family is turned away if they cannot afford the small $30 per night requested contribution and many of these families stay at the Ronald McDonald House for weeks, and sometimes months, while their children receive the treatment at CHOA.

 

Ronald McDonald welcoming you in the parking lot

Reception

Main lobby

The floors are so polished that you can actually see your reflection

Dining area

Another dining area

Outdoor terrace where my hubby and I have a "date" when Viki is with her teacher

Free breakfasts & dinners are prepared by volunteers for families

It's amazing to see how the local communities stepped up to make our lives go a little easier

Play & Game room for little ones

They thought of everything: a shuttle ride is provided to go back and forth to the hospital. 

It literally takes just 3 minutes.

Safe environment for taking Viki for a walk

Card access is required for the BMT suites.  I feel previleged.  Haha

BMT suite waiting area

Hallway of our 2 bedroom apartment

 Main bedroom

 Guest bedroom where daddy sleeps over on Saturdays

Bathroom

Fully equipped with kitchen and laundry

 Little muli-task table for serving meals, school work and much more

Small yet cozy family room

Viki having so much fun at our new home

 

 

Atlanta Ronald McDonald House is a beacon of hope for families like us.  I'm just astonished by caring staff and volunteers who create a comfortable, loving environment that allows me to focus on the well-being of Victoria.  I would like to thank all of them from bottom of my heart.  I must say, America is the most blessed country in the world.  Everyday, I'm adding on a new blessing to appreciate. Feel extreamely blessed!

 

BMT 환자들은 퇴원을 하더라도 언제 어떻게 될지 모르는 risk를 안고 있다. Recovery 중이라도  fever, infection 같은 비상사태를 대비하여 병원에서 가까운 숙소에 머물게하는데, 아틀란타는 맥도날드사에서 Atlanta Ronald McDonald House를 지원해 주고 있다.  승리가 치료받는 병원에서 3분거리, 환자와 가족을 위한 최상의 시설과 서비스로 기나긴 BMT 여정을 거쳐가는 우리가족에게 새로운 둥지가 되어 주고 있다. 매일매일 식사를 준비해오는  지역단체 봉사자들, 애들이 힘든 투병생활에 지치지 않도록 끊임없이 activity를 만들어 주는 수많은 가족봉사자들, Starbucks, Coca Cola, AirTran을 비롯한 유명 미국기업들에서 끊이지 않는 지원과 후원들을 보면서, 아직은 미국이 이렇게 약한자들의 편에 서 있는 나라임에 다시 한번 감동하고 감사 드리게 된다. 우리 승리가 이렇게 시설좋은 미국에서 아팠던 것도 또 하나의 축복임을 새삼 깨달으며, 우리도 나중에는 수혜자가 아니라 이런 도움을 "주는" 쪽에 서는 삶을 살기를 머릿속에 그려본다.