Drifting off to sleep, Ava told me what was on her mind.

Ava: I don't know what I did to deserve it, but I have the best parents, the best life, the best childhood...

Oh, child. It's called Grace. Life is pretty good because of it, isn't it?...

 

Gratitude

As we go on week 3 of Ava's ALL treatment, we are filled with so much thankfulness. We have been surrounded by the support of our family, friends, and even strangers since day one. Ava's story has been far reaching thanks to the MANY people who have worked together to spread awareness for bone marrow donation. 

Her story recently ran in several newspapers and radio stations. And today, Fox News did a short segment on District 103's beautiful act of kindness through the teacher sponsored Bone Marrow/Blood Donation Drive that went on this Saturday. Though I didn't get a chance to say it in the interview, I believe the bigger story to it all is that a community came together swiftly to answer the call of the hurting families in the district who were struggling with life altering diagnoses. A measly post on one blog site could never convey the immense amount of gratitude we feel toward everyone who has taken on our pain as their own. 

There have been many sleepless nights and we are probably consuming way more sugar than we should from the stress. Some days it hurts like a salted wound when I think about all that Ava physically goes through as she deals with the side effects of chemo. There are also times when I'm devastated by the possible outcomes of it all. But these feelings are pretty fluid. They can go away as easily as they come.

There is, however, one thing that seems universally constant in most cancer fighting families' lives and that emotion is loneliness. Ava expressed it today. And maybe it's appropriate to say that she especially feels this emotion throughout the day. Because even though we want to shelter her, we can only walk with her so far before we do not and cannot understand her journey any longer. 

"You know, mom. It's weird. I can be in a room full of people and still feel all alone," she said to me today while getting ready for church. Wow. To hear that from my child--the one whom I am responsible for protecting, not only her physical life but her emotional one, leaves me winded. How do you combat the loneliness a child feels from this terrifying disease?

The only way to attack loneliness is to be present. Ava is aware of your presence; that's for sure. Every email, card, phone call, post, text is a testament that she is not fighting by herself. Even though she might not yet understand the significance of a whole community rallying on her behalf, we will continue to teach her and remind her so that loneliness and fear might loosen their grips on her.

As for Mike and I, we have not felt that we have walked this alone. Of course there were times of loneliness as we navigated uncertain waters and found ourselves crossing boundaries we have never ventured past. But we always knew that we had an army of people beside us. 

So, although it can be lonely, we are never alone. And, we will never get tired of expressing our gratitude for that.

Thank you to all the staff in District 103 and Daniel Wright for hosting the drive. Thank you to my Half Day ladies (and EVERYONE who helped) for giving up your Saturday morning to "work it, work it." Thank you to the Stevenson Football players and Coach Brent for coming out and making "thank you" cards for all the people who donated. Thank you to Kathy Hart who supported the event by donating a pint of blood! Thank you to Pam Owens for organizing the event. Thank you to Joe White for publicizing it so that our story could be more widely circulated through the media. Thank you to my personal shopper (you know who you are) for all the moral support and late night chats to help me sort out my crazy emotions. Thank you to Patty who continues to spearhead so many things to help our family. Thank you to everyone who donated blood and/or committed to saving a life through becoming a bone marrow donor. Finally, thank you to God for seeing our family through this time and for truly teaching us that we are certainly never ever alone. For He is with us every step of the way.

(Did I just do a Grammy speech? Why, yes, I think I did.)

And finally, a big thank you to everyone that is reading this blog and faithfully praying for our family. You have given us the gifts of companionship and love by wearing our suffering and getting down on the floor with us in our broken-hearted mess.  

UPDATE on Ava's Treatment:

Ava will continue to receive the first full course of ALL treatment. She is scheduled to have a bone marrow aspirate on May 8th. Through this biopsy, doctors will be able to tell if her cancer has gone into remission. If her blasts are gone, we will continue with this therapy for the full two years. There is still talk of a Bone Marrow Transplant, especially if she is not in remission with the ALL treatment. If there are still remnants of cancer blasts, the doctors will most likely treat Ava with AML therapy and she will begin treatments right away. We are continuing to spread awareness on the need for more Asian donors in the national registry. It would be wonderful to find Ava a perfect match in the case that she needs a BMT. But, even if we don't, we know we are not working in vain because the more donors that are added to the registry, the better chances other patients will have to find a match! One of our biggest hopes is that we might help add many more donors to the registry so that, in the future, patients of ethnic backgrounds won't need to fight two battles at once: cancer and finding a marrow donor. Thank you for your help to this end!

Fox News-Lincolnshire-Prairie View Bone Marrow and Blood Drive

Happy Belated Easter!

We had an awe-filled time of worshipping God and celebrating Christ's resurrection this past Sunday! With all that's unfolded in the past few weeks, this year's Easter service was powerful. The message of hope and the declaration of victory over death were just the things this weary heart needed to embrace during this time. 

We took a family picture because it has been too long since our last one. KoreAm journal will be running a story on Ava's journey (thank you to Julie Booma for connecting us) and they asked for a few high quality pictures of our family. We were sorely short on those so I made it an unofficial task in my mental checklist to remember to include Mike and myself in the pictures with the girls. This way we can have a more complete memory of these years. They are, after all, the best years of our lives to date!

After church, the girls went for a spin on their bikes. The weather was perfect and the girls started off very enthusiastic.

However, Gwen quickly lost interest when she realized how much work was needed in order to move forward. Note to self: Must teach Gwen a lesson on the benefits of persevering. 

Then we decided to take an impromptu trip into the city to have Easter dinner on the beach. We packed our food and took off to Chicago for a magical time. But, in reality, there was a lot of traffic and by the time we got off the highway the girls wanted to eat, get out of the car, and go pee all with equal priority. Our staple restaurants Chipotle and Chick-fil-A were closed so we ended up buying allergen free chicken nuggets at Whole Foods and preparing it in their microwaves. We finally got to the beach when the sun was setting and the weather had turned uncomfortably cold. We crankily tumbled out of the car too hungry to care anymore. Did I mention that we hadn't found a bathroom yet? This was not the memorable picnic I had envisioned when we took off for our adventure.

It dawned on me that life often plays out this way. We spend our whole lives planning for things and we expect them to go off without a hitch. In fact, problems that blindside us can really do a number on our faith and our attitudes. But there is beauty waiting to happen when our plans are derailed. 

Ava is a perceptive kid which has made this whole cancer thing a lot trickier. I can't find a better situation to hope for the bliss of ignorance than in conversations about cancer. It's hard to be truthful and wise when answering questions about disease and dying to your kid. She understands so much more than I want her to, but she also internalizes the information with a ton of maturity. In our bedtime prayers tonight, I asked God to help us find a bone marrow match if it is His will. After our "Amens" Ava said, "Mama, if I don't find a match it's okay. It just means God has a better plan."

Can death be a better plan than life? (Not that us being unable to find a match means Ava won't beat cancer!)

Death is not an indication that God failed us. No, in fact, it is only because He succeeded that death can no longer overtake us. We will die but we will still be victorious in death. It's all a beautiful truth that we would rather comprehend later in life when we are old and gray and have seen our children thrive and find their places in life. 

But sometimes death finds us earlier or, for reasons too lofty for us to consider, death finds our children first. Losing a loved one is a messy experience that doesn't have a protocol. There is no plan to deal with it best. Nothing on this side of Heaven can remove the grief and the numbing pain. But God is famous for transforming really really bad situations, into ones that are inexplicably good. He's the only one able to make beauty from ashes. 

My heart is so incredibly full of emotions tonight. It feels like it's going to burst from the joy of having a child like Ava bless my life for the past 5 years. It feels like it's ripping at the seams with despair and sadness for the possibility of living without her. It is torn by the broken dreams and the unfulfilled plans that cancer causes. And then it is stretched to the limits with love for my children, love for this life, love for every minute we have together right now. 

I'm letting her words wash over me because it is good for my soul to hear that God's plan is better than mine. 

The unexpected ending to our day was far better than we could have imagined. We sat on the cold sand and ate our cold dinner. We savored every minute because we remembered the journey it took to finally get there. We dug our feet into the sand, made sad-looking sand castles, and enjoyed the last few rays of the setting sun. Most of all, we were thankful to add another memory to our bank. And to think, we were worried that it wasn't going as planned.

“'My thoughts are nothing like your thoughts,' says the Lord.
'And my ways are far beyond anything you could imagine. For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts.'" 

Isaiah 55:8-9

Ava's Note

We sat in our Good Friday service and meditated on Jesus' suffering. His was an inconceivable kind-one that we could not possibly wrap our minds around. There is so much to say regarding the Cross, yet nothing seems sufficient. I glanced down at Ava during the service and saw that she was scribbling in her small pink notepad. Later, upon closer inspection, I discovered this:

Though we falter at articulating our thoughts of thankfulness, awe, praise, and affection, You have already "taught children and infants to give you praise." (Matthew 21:16)

We thank God for our children who teach us powerful truths about God, gratitude, hope, and faith.

*Please join us at one of TWO Bone Marrow Drives held next Saturday, April 26th!  We continue to look for a perfect match for Ava!

*Here's one more way to spread the word:
http://lincolnshire.suntimes.com/things-to-do/marrow-LSR-04242014:article

Won't you consider leaving a comment on any of the articles you have read so far? It would be a great testament to the relevancy of this topic and perhaps we can bring continued attention to the need for more bone marrow donors!

More Bone Marrow Drives!

We are pleased to announce that there will be two more bone marrow drives next Saturday, April 26th! One will be held in school district 103 (Lincolnshire), and the other one will be in Wheeling. Please see the updated Marrow Drives page for more information.

Note: the Lincolnshire drive will also be a blood drive, so if you are also interested in donating blood, you can kill two birds with one stone! Ava has had 3 hemoglobin and 4 platelet transfusions so far. Your blood donation can help pay it forward to those donors who gave Ava the gift of life. (Sorry, this drive is not able to accommodate platelet donation. Please see the LifeSource website to find donor centers that are equipped to collect platelets).

If you or your friend(s) weren't able to attend a drive during our Bone Marrow Blitz weekend and haven't gotten around to ordering a kit online, please come out to one of these drives on the 26th! If you think of anyone else you can share this information with to help spread the word, we thank you in advance for doing so.

LP, Labs and More

Esther and Ava will head downtown for Ava's clinic visit today (Thursday). Ava will get another lumbar puncture (spinal tap), most likely to administer chemotherapy there prophylactically. She will also have labs drawn, so I'll report on those when I find out.

I have some more information not pertaining to the clinic visit that I'll share later, so check back to this post for updates.

As always, thanks for your prayers!

Update 9:45pm - Sorry I didn't get a chance to update during the day like I hoped.

Today was a good day! Ava's numbers were good; ANC is going up, hemoglobin and platelets are looking good, and her (peripheral) blasts are 0%. Hooray!

Remember the drug that caused her an immediate reaction? Well, there is an alternative drug they can use, but it has many downsides:
1) It is an IM injection (in the muscle) and not something they can give through IV. This means Ava would get an actual needle stick.

2) This would be a large bore needle (meaning the diameter is pretty big, not small like an Epi-pen which she doesn't like as it is). Meaning: it would hurt.

3) This would not be a one-time administration like the other one, but would require going down to Lurie's 6 days spaced out every other day, meaning every other day for almost 2 weeks.

THANKFULLY, the docs were really encouraged to see how well Ava seems to be doing. They said IF they started her on this alternate med, it wouldn't be until June (if they use it all). This would be really, really good news if Ava could skip this med altogether! Let's pray that God would make such a way!

Please also keep the bone marrow transplant in your prayers, that if it comes to that, Ava would have a perfect match. I don't know if there are any new developments on that one lead in Japan, but we still have 333 new registrants in processing, plus the ones who joined via mail, AND we have two more bone marrow drives coming up on April 26th! (I'll post more info on those drives in a separate post). SO... we still have potential matches in the works. It feels a little like Charlie and the Chocolate Factory: will one of us be so blessed as to get that "golden ticket" and be Ava's match??? I guess we'll find out...

Thank you for all your love and friendship!

Trading the Sorrow

All day I've had a lump in my throat. I've been trying to suppress it, stuff it down. I mean, really. I've tried everything I could think of: praying, reading, playing, even shoving down a slice of cheesecake. But, nope, it is still there.

We've come so far on the wings of hope that I'm disappointed in myself for breaking ranks - all for this annoying emotion called sorrow. It feels ungrateful to all the countless people who have pulled alongside us with the unified purpose to see Ava cured of cancer. My faith seems insincere in moments like this. Why can't I just journey with joy?

I was scared to open my mouth today for fear of all the anguish that would come tumbling out. I'm sad. I'm sad that Ava has seen more hospital rooms than our whole extended family combined. I'm sad that she watches us eat a variety of delicious food while she eats the same things every single day. I'm sad that instead of worrying about what toy she's going to sneak into her backpack, she has to worry if she's packed her epi-pens and her face masks. I'm sad that while kids are planning playdates, she plans for the days she'll be getting chemo. I'm sad that her long hair is gone and she spends time in front of the mirror touching her head. I'm sad that she went from five years old to 65 in one month. I'm sad that she hasn't had much of a childhood from the get-go. I'm sad for so many things she'll have to go through in the next few years as she continues to fight.

But mostly I'm sad that there are days when she is sad. That one more tear should fall from her eyes because of this stupid cancer makes me tremble with all the weight of the world. Today, Ava was sad. It was the first time she cried for herself during this whole experience.

"Mama, what if I don't make it?" she asked me tonight. And then she wept. I held her told her she was going to be fine. And then we cried together because I want her to know that it's okay to express our complete and utter heartbreak.

What do you do when your 5 year old asks you questions that you should never have to answer?

Ava: Mama, do you think a girl with Leukemia can get married?
Me: Of course they can! Why do you ask?
Ava: Because wouldn't the man think she is weird?
Me: Do you feel weird, Ava?
Ava: (nods her head) Cancer makes me different. I feel sad and blue.
Me: I think God chooses special people to have cancer.
Ava: Is it because other people would just give up and quit?
Me: Yes, he picked you because he knew you would fight and change the world.
Ava: How could I change the world?
Me: You have many people praying for you from all over and maybe even getting closer to God because of that. Are you okay with him using you like that?
Ava: Yes.
Me: Really? How come?
Ava: Because God loves me and He knows what's best for me.

I've said it before and I'll say it again. This girl stitches up my brokenness. She shows me the way out from the shadows of sorrow by pointing toward the light. The truth is that she gets it. If God is love and He loves us, then we are in a good place even in our despair. He changes our mourning into dancing eventually. I'll cling to that today.

*If you could please continue to pray that we would find a perfect match for Ava. It seems a marrow transplant is the best bet at curing her cancer. Please spread the word! Even one new registrant offers renewed hope to searching patients everywhere! For those that have made the commitment to save a life through bone marrow donation, you have shown the true meaning of love.

Here are two ways to help spread the word:

http://www.bethematchblog.org/2014/04/meet-ava-a-young-girl-fighting-to-survive-with-a-smile-2/

Reaction to Chemo

Ava started receiving her chemotherapy infusion about half an hour ago and immediately started reacting to it. They stopped the drug and she was already wheezing, so they are re-assessing how to proceed at this point. This is a key component of the chemotherapy regimen, so it's not optimal for her to miss this one...

Update: They decided to not give Ava this drug today. There is an alternative one they can try instead, but they will wait until next month to try again with that one. Thankfully, Ava's reaction subsided when they stopped the infusion.

Praise: Gwen's fever broke on her own this morning, so no need to squeeze in an additional doctor's visit. She still has some complaints of abdomen pain, but is doing better. 

Thanks for your continual prayers!

Throne of Grace

There was this time in my life, in 5th grade, when I was going through a rough patch. I remember bringing home some pretty bad grades. I was on the cusp of failing in several subjects and so my parents decided that I needed some real motivation. I had wanted a puppy for so long. So that is what they offered me - a real live puppy. No more battery powered toys that were cheap substitutes to the real breathing, walking, pooping kind. I was ecstatic! Of course, I would work hard for a puppy. The bar was set real low for me (only straight C's) so that I could achieve my goal and possibly find inspiration to continue to do well for the rest of the year. So I gave it my all and at the end of the quarter my grades were assessed. I got a few D's that quarter and I felt crushed that I wouldn't be getting my puppy.  I had missed the mark by a lot.

My parents were fairly unconventional when it came to Asian parenting. They showed me unfettered love in the form of hugs and kisses and "I love you"s. Whenever it was time for grades, they never "expected" an A. They just wanted my best. Often the question was, "Did you try your best?" It would be more offensive to them that I brought home an All-Star report card without any effort than a C earned with all my heart. Also, there was not one other Korean kid I knew that would be getting a puppy for bringing home straight C's. Who rewards their kid for mediocrity? 

My parents did. And it wasn't because they thought it was awesome that I was subpar. It was prompted by their love for me despite my averageness. I didn't have to be perfect to garner their love. 

There are some distinct moments where I am able to pinpoint God's grace in my life. This was one of them. My parents got me that puppy and they did it with so much joy. "Esther, we know you tried your best and we know that you didn't reach the goal we set out for you. But, we love you and we want you to know that we are proud of you," they said. With that, they took me to the pet store (this was still in the 90's) and they bought me a really expensive Cockerspaniel/Poodle that I named Sherry and loved with all my heart. This dog was special to me because my parents gave me something I truly did not deserve.

My life is filled with so many moments of mediocrity, and none more so than in my journey as a mother. I can recall many of these. There was that time I let Ava's feet outgrow her shoes and she told me not to feel bad because the shoes still fit if she just wore them barefoot. Or the time when I fed her something that caused her to anaphylax. Or the time Leukemia cells were collecting in her blood and her joints and I ignorantly glanced over the signs.

Ava will be a better mom than me one day. I'm not just assuming this because I have actual evidence of it. I pulled this example from a facebook post from last year.

_______________________________________________
Post from August 30, 2013:

Today during bedtime, Gwen was throwing such a stink fit I left her in the hallway to work it out herself. Ava felt it was time to intervene.

A: Mama, go get Gwen.
Me: NO, she's annoying. She needs to stop crying. (I'm such an awesome mom and feel so proud of myself sometimes.)
A: C'mon, mom. Be responsible. You're the mom. Go get your child and help her to stop crying.
Me: ...fine...(slinking away to collect Gwen)
_______________________________________________

But she won't be deterred from thinking that I'm outstanding, no matter how many examples of unremarkable mothering she's seen. "Mama, I love you, " she tells me every night. "You're the best." She obviously knows I'm not perfect but she chooses to celebrate me even in my mediocrity because she loves me. 

My girls are God's gifts of grace. I couldn't have earned them with all the excellence of a lifetime. No, they were simply given to me by a God who loves me even knowing I would miss the mark many times. 

Ava and Gwen give me grace too. Every time their chubby hands look for my cheeks in the middle of the night, every kiss they plant on my face, every wide smile they shine my way when I come home from work, every single one of their love filled actions defy what I really deserve. They deeply impress God's grace on my life. 

But, I feel the heavy weight of responsibility when they look at me with so much confidence. I can see it in their eyes. They expect me to take away all the evil in the world. They want me to restore order to the chaos. They think I'm the hero. 

Like yesterday when Ava suddenly wanted to talk about death.

Ava: Mama, I wish no one had to die. I wish Adam and Eve never ate that apple even though it looked like the juiciest thing EVER! 
Me: What made you think these things?
Ava: It's just that I'm scared about death. I don't want to you to be separated from me. But your love would reach me all the way from heaven, right?
Me: Yes, Ava. (relieved that she was talking about my death)
Ava: And that's not going to happen for a long time. Right, Mama?

And she looked at me with her smiling eyes totally trusting that I got this death thing under control. She depends on me. Mediocre me. 

Oh God, I feel so powerless. I can't save the day. I can barely cook a meal. 

For as long as we both have breath, I will continue to teach her that You are the one in whom she can put all of her confidence because You are the perfect one- the only one who won't disappoint. You lavish us with your grace and we find that our fears are driven away by your perfect love.

"Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need." Hebrews 4:16

Chemo Tomorrow

Ava will return to the clinic tomorrow to receive her next chemo drug. This is the one that notoriously causes reactions in people, so thank you in advance for your prayers! Apparently some people don't mount any type of response the first time, but may develop a reaction after a couple of times of having received the drug. So, although this is supposed to be outpatient therapy, the Lees will prepare to stay longer if necessary. Please pray for Ava to be reaction-free now and throughout! (I'm not sure how often she will receive this particular med). What we do know is that Ava will otherwise be getting chemo every Thursday.

Please continue to pray for Gwen as well, as she still has some fevers and complains of stomach pain at times. She may need to return to the doctor tomorrow if her symptoms do not resolve.

Praise: This one steroid that Ava needs to take twice a day is also well-known to taste really nasty (e.g. inducing vomiting, causing much grief, etc.), but Ava has been taking it like a champ! Mike & Esther have been putting juice in her mouth, tossing the pill in there, and Ava has been able to throw it back and swallow it down! This is a HUGE blessing for which they all thank God for!

Thank you so much for your partnership in prayer!

On another note: seeing as Ava started ALL treatment and should generally be receiving outpatient therapy, I added more dates to the meal schedule for home delivery. Please know that Mike & Esther do not expect any meals to be provided, but I know many of you would be interested in serving them in this tangible way. You can check out the meal website to sign up for a date and get more details. As always, let me know if you have any questions. Thank you!