Monday, March 3, 2014

Chemo Day 1 - updates from Mike & Esther

(Mar 2)
From Mike:

Her "mixed lineage" or ambiguous lineage leukemia means that each cancer cell has properties of both ALL and AML. The decision was to use the ALL treatment first, which began yesterday. This morning, we found that the treatment is not working. Rather than decreasing, her white blood count has spiked to over 100k.  So the decision is to switch to AML treatment, starting today.
In this hospital, they receive 55 new ALL patients per year. There are 10 new AML patients per year, but just one mixed lineage per year. This is a very rare type, where Ava's doctor has treated one case over the past few years. The same can be said of her colleagues.  So there isn't as much data on this illness as the other types.
Ava has been in great spirits, having a lot of fun and appreciating all the gifts and messages over the past couple days. We are so grateful for how energetic and happy is. She's laughing and playing a lot.  I did notice that she's starting to sneeze and have a runny nose.
Thank you so much for your continual prayer and partnership in this trial with us!

(from Esther's FB page):

Thank you, again, for all of your prayers and your love. The past two days were very difficult for our family. We received an updated diagnosis on the type of Leukemia Ava has. The team of doctors at Lurie's discovered that Ava has a rare type of Leukemia that is called mixed lineage meaning it is both ALL and AML. Only 3-5%of kids with Leukemia have this type so there is not much data out there. In general, kids with this type of Leukemia have a poor survival rate.

Ava began treatment for this type of cancer through the ALL chemotherapy route. Our doctor felt positive with this route but after a day of chemo, they found her blood count went up even higher than it was originally. They immediately stopped treatment and changed course to go the AML route. We were so disappointed knowing that if Ava responded well to the ALL treatment, her prognosis would be higher.

We are devastated by the statistics of mixed lineage leukemia and even though I feel like my heart is breaking into a million pieces, I also know that God is more than able to preserve her life.

Please continue to pray with us that:

1) Ava would stay comfortable throughout this process. Since we are doing AML chemo, she is exposed to very toxic chemicals.Her hair is already starting to slowly fall out and even though it's only a strand here or there, it will soon all fall out. She is embarrassed and scared for when this will happen.

2) We would continue to stay hopeful especially in front of Ava. We are coming to terms with her diagnosis but, man, is it hard to put on a smile. We are trying to enjoy every single moment we have with her right now whether it is playing a game or taking her to the bathroom for the 10th time that hour.

3) My heart breaks for Gwen. She seems so lost without her parents and her sister. She arrived at the hospital yesterday with really irritated skin, a nose full of hard boogers, pants that were too short on her, and for the first time since she was potty trained a year ago, she had an accident in her pants. I know she is scared and, at times, I feel more badly for her because her world is completely turned upside down and she doesn't have the security of us navigating it with her. Please pray that Gwen would not be depressed and that she would quickly adjust to our new "normal".

4) PLEASE, PLEASE pray that Ava would beat ALL odds and be in the small percentage of kids who are cancer free for the rest of their lives.

5) Please pray that Gwen would be a PERFECT bone marrow match for Ava.

6) For wisdom on how we should continue her treatment. St. Jude's is the only other hospital that has extensive experiencewith this type of rare cancer. Unfortunately, it is not that easy to get in. We want to do what's best for Ava and be confident that we are where she needs to be.

7) We are already thinking about how we will cope without our sweet girl. I know it is not healthy to do that but my mind goes there constantly. Please pray that I would stay focused on the here and now,and that I would use every moment of my day to drink in her beauty.


1) Ava got to eat delicious cupcakes today courtesy of Auntie Patty Yang. It was exactly what she needed to lift her spirits.

2) We have been inundated with love for Ava and ourfamily. From food to gifts to phone calls and texts. Please know that your words and your gestures are what carries us through this time. Although I am notable to email/text back right away, know that we are blown away by your generosity, love, and compassion. Ava is enjoying every word and toy and thought that you are sending her.

3) Ava and Gwen got to have a short visit today with each other and enjoyed it very much!

4) I had a chance to go to Church of the Beloved and spend time with some of my friends who visited us at the hospital. It was a balm to my soul.

There are so many more things to be thankful for and I will continue to count my blessings through my updates. I'm thankful especially to God who binds us up with his promises. We know that this life is temporary but it would feel like an eternity without her. We also know that God is no stranger to this type of suffering so we take comfort knowing that he does not give us more than we can handle. Finally, we thank him for choosing us to be Ava's parents. She is truly a gift. I have never met anyone like her. I'm so thankful God entrusted her in my care for the last 5 years and I hope for a lifetime more with her.


jaemom said...

Comments from the now defunct CaringBridge site:

By Jennie Hsieh — 2 hours ago
Ava, we love you so much! Stay strong and brave, and know that every day we are asking God to give you strength and make you well again. We know God's love is more than we can imagine and we know you are His precious child. The girls send their hugs!

By Josie Mo — 3 hours ago
Can't hold back the tears after reading the journal updates. My heart breaks for you, Lee family. Will be praying fervently for all of you, especially Ava.

By Teresa Lau — 5 hours ago
Our immediate family and beyond are praying for Ava, especially that she would respond favorably to the new course of treatment. We will continue to be on our knees interceding for Ava. We love you so much!!

jaemom said...

And another:

By Donald Sun — 9 hours ago
Hi Mike, Hi Esther, thanks for sharing your specific prayer requests. May the Lord bring complete healing to Ava and blessed times of family togetherness to you throughout this ordeal. As a family, we're praying for you all. Love, Don, Mary, Evan, Lauren, Katie and Logan.

Pastor Wu and Jenny said...

Dear Mike and Esther, we and our church are praying for you, especially for Ava.
May the Lord guide you all to go through this process. His Grace is sufficient for us.
Love from Pastor Lit Inn and Jenny Wu
True Light Lutheran Christian Church

Edward Denecke said...

We are praying for you!