Day +83
Clinic day / getting a monthly aerozolized pentamidine

Recap on clinic visit

• WBC: 2.72
• HGB: 10.3
• Platelet: 157
• Possibly stop Lasix if her potassium level continues to drop (at 5.4)
• Continue to keep an eye on her kidney numbers (BUN at 30, Creatinine at 0.7): encourage Victoria to drink 60 oz of liquid daily.

Today's visit was difficult one for me. Waiting for an hour for her lab results felt like an year. Though her WBC and HGB went up a little, her platelet count has gone down again.  That's 3 times in a row now. My hubby comforted me that 2 out of 3 ain't bad and that we shouldn't expect all counts to go up every time. I totally understand but it's just not enough for mom. I find myself getting worried about her platelet count and emotionally breaking down.

I have a special prayer request to all of you this week.

Victoria is scheduled for the 2nd chimerism test and bone marrow biopsy Monday on Feb. 4th. Dear everyone, please pray that her 2nd test will confirm 100% donor cell engraftment and also pray for me to have more faith and confidence.  I do really need this reassurance to stay at peace.

Here are some pictures from clinic today.

 Finally took our Awareness Award home today. Feel so honored!!!

Viki and our Be The Match Representative Ms. Caitlin holding the honorable award.

Thanks a million to Caitlin for being a BIG part of our journey.

 Can't believe it's already that time of the month again.

Viki getting a monthly aerozolized pentamidine.

 Everyone else has to wear a mask while Viki's getting her pentamidine.

 Watching Tom and Jerry while at it.

이식 후 83일째, 오르락 내리락 하는 카운트를 보면서 한시도 마음을 놓을수가 없다. 엄마라서 그런진 모르겠지만, 카운트가 조금만 내려가도, 승리 몸에 어디 조그만 멍이라도 보이거나, 얼핏봐서 입술이나 손바닥, 발바닥이 창백해 보인다거나 하면 가슴이 철렁 내려 앉는것 같고, 게다가 이번주로 3주째 혈소판 수치가 하향세를 보이니 다시 마음이 조마조마해지면서 불안함과 두려움이 다시 엄습해 오는것 같다.  정말 기도가 필요한 때인것 같다. 2주뒤면 다시 있을 2번째 골수검사를 위해 마태복음 8장,9장 말씀을 붙잡고 메달리는 수 밖에 없는것 같다.

주님,
제 마음속 두려움의 영을 떨쳐 버리게 해 주세요,
2월 4일날 있을 2번째 골수검사에서도 주님의 보혈로 우리 승리 골수를 채워 주세요,
제가 지치거나 포기하지 않고 오직 주님만 바라보게 해 주세요!

Day +76 clinic day
Day +75 central line removal surgery post-op appointment

Recap on clinic visit

• WBC: 2.54
• HGB: 9.9
• Platelet: 176
• Kidney numbers are still little high (BUN at 26, Creatinine at 0.7): encourage Victoria to drink 60 oz of liquid daily.

Honestly, I got frustrated with her lab results today since the CBC counts seemed about the same or even lower this past month. I could tell that I was running out of my patience again even though Dr Qayed didn't seem to worry. Other than me being concerned, her post-op appointment yesterday and clinic visit today went okay.

Dear everyone, please pray for me to have some peace.  Dear God, please put our Victoria in your healing hands. Amen!

Viki took off the sterile tapes by herself the night before the appointment. So brave!

The incision sites looked like they're healing well. 

Weekly clinic visit became our family-outing and I really enjoyed holding Viki's hands when we walked.

Waiting for the lab results. Always daddy's little girl!

Dr. Qayed examining Viki.  Thanks Dr. Qayed for comforting me today.

 

 

믿음은 바라는 것들의 실상이요 보이지 않는 것들의 증거니 (Hebrews 11:1)
 

오늘 클리닉 다녀온 후 승리 카운트가 정지된 듯한 답답한 느낌에 또 성경책을 찾게된다.  다음달이면 100일째 골수검사를 다시 하는데, 마음을 다잡고 다시 처음과 같이 갈급한 마음으로 기도하는 수 밖에는 없는것 같다. 오직 기도와 믿음만이 마음속 두려움의 영을 떨쳐 버릴수 있을테니깐.

 

 

 

Day +70
Clinic day

Recap on clinic visit

• WBC: 2.88
• HGB: 9.9
• Platelet: 184
• Wean down Cyclosporine to 0.9ml due to an elevated kidney levels (BUN at 28, Creatinine at 0.7).
• Continue to have Victoria drink plenty of water and follow low-potassium diet (potassium at 5.7).

Now that we are home, we had a road trip to the clinic for the first time in a long time.

Her labs and PE(physical exam) went very smoothly.  Dr Haight thinks Victoria is doing exceptionally well for +70 days and everything is going as smoothly as possible.

I love the sound of it!

Viki at the gift shop on our way out

Day +66
Discharged & Going home

Home Sweet Home!!!

Finally, we made it home home today. What a ride! It has been an incredible 73 days.  Time flies not only when you are having fun but also, when you're experiencing a true miracle at work!  This was only possible in God's power and grace. Praise the Lord!!!

 

Viki and I were so so happy to be home sweet home.  Now that I'm home, all the tensions have been released and I feel exhausted. I can't wait to sleep on my own bed tonight!

Day +64 Re-admitted due to fever
Day +63 Clinic day

Recap on clinic visit

• WBC: 3.46
• HGB: 9.7
• Platelet: 193
• No medication changes, continue all current supportive care

Clinic visit on Thursday went very well. Her counts looked good, no issues. We were cleared to go home. We were busy with packing and were more than ready to go home.  We are so thankful that she didn't get any significant side-effects and is able to go home sooner than we have imagined! It is a true miracle!

Lo and behold, on our last night at Ronald McDonald house, she ran a FEVER!  Frankly, Victoria's conditions have been "too good to be true" in a sense and I wasn't surprised by it in a way. I kind of expected something like this because she's been feeling warm and sleeping way too much for past 10 days. Having been a caregiver for over 1.5 years for Victoria, I'm more intuiative when it comes to her symptoms. I'm glad this didn't happen after we went home.

Calling 911 for an ambulance and being alone just two of us at 3:30AM was little scary but, I'm a mom and there is nothing I can't do for my daughter. haha

Paramedic checking her vital signs in an ambulance.

Drew blood for culture and waiting for her counts in triage room at ER

I was worried that her counts might have dropped significantly but, to my surprise, her counts were stable (WBC: 3.81 / HGB: 9.2 / Platelet: 199).

However, since she was a recepient of an un-related donor and is still at an early stage of her post transplant, her doctors put an order to place Victoria on inpatient for precautionary reasons.  I didn't mind at all.  Staying couple of more nights was not a big deal.  Better to be safe than sorry for sure.

They assigned us at the same room where Victoria had her transplant, which brought back all the memories. I got emotional for a moment. We won't ever forget this room # 3208.

As soon as we walked in to BMT suite, Viki made herself at home and started riding the tricycle, saying hello to everyone and went to the play room to play with toys.  Again, she inspired me by showing her maturity and calm composure to a bad situation. My girl is a real champion. I am so proud!

We might be going home on Sunday or Monday at the latest doc. said.  I'm okay either way as long as my little one is having fun.

집으로 가기 바로 전날에 제대로 신고식을 하는 우리딸 승리, 그래도 병원에서 가까이 있을때 열이 오른게 얼마나 다행인지, 이참에 항생제 맞고 열 말끔히 떨어져서 마음 편하게 집에 가는게 차라리 잘 된것인지도.. 우리 승리 덕분에 한밤중에 앰불런스도 불러보고, 정말 미국에 시집와서 안해보는게 없다. ㅎㅎㅎ 
병실에 다시 왔을때 마치 친정에 온 것처럼 신나하는 승리를 보면서 정말 우리딸은 참 강한 아이라는걸 다시 한번 느꼈다. 승리 본인도 얼마나 집에 가고 싶었을까? 하지만 이 상황을 불평하지 않고 긍정적으로 받아들이는 우리딸이 참 고맙고 자랑스럽다.