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!
Mike
(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.
Praises:
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.
4 comments:
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!!
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.
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
We are praying for you!
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