Wednesday, April 30, 2014

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?...

Sunday, April 27, 2014


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!

Tuesday, April 22, 2014

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

Friday, April 18, 2014

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:

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.

Thursday, April 17, 2014

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!

Wednesday, April 16, 2014

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:

Monday, April 14, 2014

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

Sunday, April 13, 2014

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!

Saturday, April 12, 2014

Prayers for Gwen

Gwen is spiking a fever of 103. We gave her tylenol and are waiting for her fever to come down. We ask for prayers that her fever would break quickly and that she would not be contagious. It would be very difficult to keep both girls separated from each other.

Recently, Gwen has been tripping more than usual and a few days ago she slammed her head against the side of our dining room table while walking around it. A few hours later she lost her balance and fell twice within minutes of each other. An hour or so after that, she fell and hit the corner edge of the t.v. stand missing her eye by a few millimeters. And then, a few days later, she fell down a flight of stairs.

Gwen has been receiving physical therapy for a year now and we have seen major improvements in her tone and in her ability to control her feet. However, the latest incidents have been a set back and we continue to worry that her lack of coordination might cause serious harm if not corrected. Thank you so much for your prayers and your faithful support of our family. We humbly ask that you might lift up a prayer for Gwen regarding these concerns. We believe in the power of prayer!

Let's Race-Be The Match

Before I became a mom, there were two things that I looked forward to doing with my kids one day: eating ice cream and racing together. At four months after having Ava, I knew that ice cream was out as I listened to the allergist explain that her painful eczema sores were due to food allergies. At one years old, Ava had her first allergic reaction followed by many more anaphylactic reactions as the years went on. My hopes of sharing a scoop of ice cream from Baskin Robbins on a hot summer's day were dashed. I know it sounds silly. It's just ice cream. But I love ice cream and this felt like a pretty big loss.

Equally as important was the thought that I might run a race with her striding alongside me. I've been a runner for a long time. Throughout the years, I've run a good number of races. I trained intensely for several of them. That meant long hours at the gym logging up to 35 miles a week. It meant new shoes every few months and shin splints and patella pain. It meant dedication, perseverance, and pain. All the discipline required to train my body to reach new goals made me feel confident that I could handle almost anything that came my way. Watching Ava grow up, I've come to realize that no amount of physical strength could have prepared me for the searing pain of seeing my child teeter between life and death.

On August 14, 2011, Ava and I ran our first race together. She had seen a commercial on t.v. adveristing the WTTW Fun Run to support Channel 11. She began to talk about it regularly and finally asked if she could run it. I'll never forget the giddy excitement I felt as she asked, "Mama, could we go to the Fun Run for my birthday." The Fun Run was being held on her birthday that year. She was turning 3. How much more perfect could our first race be? We pinned on our numbers and laid out our running gear the night before like I had done many times in the past. But this time seemed to matter the most because I felt like life with my girl was just starting. I dreamed ahead to all the races we'd be running together as partners.

Today, we will be running our second race together. We'll be participating in the Be The Match Walk/Run to raise funds for patients looking for a second lease on life through a Bone Marrow Transplant. Be The Match is the world's leading non-profit organization focused on saving lives through marrow and cord blood transplantation. I could never have imagined that our second race would be for such a personal cause. We haven't trained a step for this race. In fact, the last time I ran was probably a year ago. Ava, who never let her asthma attacks get in the way of a good chase, has been weak lately. Her stamina has been greatly affected by her disease and the medications she's on.

But, I think she's got this. She has all the qualities that make a runner good. Whether it was in trying to overcome her allergies or, now, trying to beat her cancer she's been running a race for some time now. And she perseveres with so much inner strength and poise and grace. I don't know how many races we'll get to run together in the future but I'm cheering her on in her current marathon as she runs with all her might to win back her life. Even if she runs 100 marathons down the road, I'll never be as proud of her as I am now.

You're doing real good, baby girl. Keep going. We'll run this one together.

"The cure for blood cancer is in the hands of ordinary people. You could be the cure." -Be The Match

Friday, April 11, 2014

Arms Opened Wide

One month ago, the skies darkened over our lives as a skin infection revealed that 99% of Ava's blood had Leukemia cells. And to think, that my main concern that day was a case of MRSA on Ava's skin and a missed day of work! The initial hospital stay after her diagnosis was 23 days and we geared up for a terrible and long road to recovery. We were told that Ava had a very rare type of cancer, one that only hit 3-5% of the Leukemia population. There was no protocol for this type of cancer but they would do everything in their power to cure her. "We will not disappoint you," the medical team said. But it seemed every piece of news after that brought us lower and lower until we were on our knees in desperation. 

And that's when you stepped in. 

We were inundated with the love. I mean, it was to the point of overwhelm. How would I write back to each of you thanking you for your kindness? Who were some of you and what motivated you to give so freely to our family? What could we do to repay you?

That was our first lifeline.

Then we found out that Ava's treatment was not effective in bringing down her blasts. She stood at 30% blasts in her blood weeks after her first round of chemo. We were told a Bone Marrow Transplant was a strong option and a search was made to find a match. We posted everywhere and friends planned 6 drives in Ava's honor. We asked for prayers and you stormed Heaven on our behalf. Interestingly, her blasts went all the way down to an undetectable level by the end of the month. Our doctors were "very surprised."

That was our second lifeline.

Today we went into clinic ready to stay one night, ten nights, one hundred nights. We didn't care. We just wanted her to get better. Her doctor walked in and said that they had conferred and decided that Ava would be switched to a different treatment because the first one still left 0.7% blasts. This new treatment would require a weekly visit to the hospital to push a few drugs into her pic line and then we could be on our way home to heal in the comforts of our home. 

This was our third lifeline.

We know we aren't there yet and we know that there are no guarantees. We know that nights might still leave us frozen in fear and that the good days might still be clouded with doubt. But, we also don't know how many surprises God has planned for us along the way and we will take them all, with arms opened wide.   

Thursday, April 10, 2014

Echo (First Procedure of Today)

Ava is having an echocardiogram done to make sure the medications she has been taking are not messing with her heart. We knew that this was a possible side effect but this procedure makes it more "real." On a bad day, we are discouraged and we think, "What's the point of trading in one illness for another down the line?" But then we remember that each day has enough problems of its own and we try to focus on today. We live one day at a time, learning to lean on God's grace and the love of all of you who are doing such a major work in our lives with your prayers and your support. We pray that the medicines that cure Ava of cancer do not bring on secondary cancers or other problems with her organs in the future. But, most of all, we pray that Ava's faith would increase in the midst of trials that are often too great for a child, and we hope that our faith would take her courageous lead.

Tuesday, April 8, 2014

Latest Update

Hello Friends! Thank you for your faithful prayers for our family. Life is pretty normal right now. The girls are settling into a routine and Gwen isn't as clingy anymore when she hears me picking up my keys to go somewhere. Ava has been going to school when she can and is generally happy throughout the day. Mike is slowly taking back the different ministries at church and I'm trying to get our life in relative order before the next round of chemo.

Patty did a great job of updating everyone with what's been going on so far. We got a call from the doctor today postponing clinic (again) until Thursday. They are still waiting on results from Seattle to see just how many blasts are Leukemia cells. It looks like the number is somewhere between .5% to 1.5%. The plan is to switch to ALL treatment and begin chemo on Thursday. The great thing about this treatment is that most of it can be done as out-patient. This means that the whole family can continue to be together throughout the course of the treatment and that Ava will be able to recover in the comforts of our home.

This also means that Ava did not have the best response to the AML protocol. Her numbers were sluggish in coming down but the amazing thing is, her doctors were pleasantly surprised that the blasts came all the way down to zero. They were not expecting that to happen especially since there were still a number of blasts present after induction. So, this means that prayers are being answered! Ava's case is a tricky one, no doubt, but our God has a few tricks up his sleeve as well. ;)

We were also told that Ava will most likely not finish the ALL course, which is normally 2.5 years because as soon as a match is found the doctors would like to take Ava to transplant. As you may remember, a preliminary search was made last month and a potential match was located in Japan. Further testing is required to see how well of a match it is. We pray, firstly that Ava would beat cancer without the need for a BMT. However, if a BMT is the best option, we pray for a perfect match and a successful transplant. A BMT is another wearisome battle to fight with some definite obstacles, but we pray that our little warrior would give it her all and that God would continue to pave the way for healing.

Thank you again for your support this past Sunday in supporting us through the many bone marrow drives that took place. Your support, whether it was through attendance, prayer, registering via mail, or volunteering/planning meant the world to us. God shows his kindness to us each day through your continuous gestures of love.

Next Saturday, Ava's Team will join many other folks, including Connor's Team, to walk/run at the Be The Match event. We thank you for your donations and for joining our teams physically and through prayer. Our greatest hope is that we might spread the word that being a match and donating marrow is a beautiful act of love and kindness that has the power to heal, not only the blood, but also the organ that is often the most shattered after a diagnosis-the heart. May the Lord bless and keep all of you who are walking this road.

With so much love and fondness for all of our friends and family,

Chemo Round 2 on Wednesday?

So the plan for "now" is that Ava will likely start chemo on Wednesday. There was such a small amount of blasts in her bone marrow biopsy that it's difficult to determine the amount of leukemia cells (though it may be less than 1%?) They sent away for more testing to see for sure.

So, we still don't know which chemotherapy they'll go with at this point. If Ava gets ALL treatment, apparently it is done on an outpatient basis. But we don't know right now for how many days -- in the beginning, we understood ALL treatment to be 5 days versus the 10 days with AML. However, it is unclear to us whether this was just for induction (and if they will "induct" Ava with ALL this time, since she already had a round of AML). The treatment regimen seems to be easier with ALL, except there is one drug that always gives people a reaction and they have not figured out (as far as we know) how to help avoid Ava having a reaction.

As you can see, there's a lot of waiting around at this point, and it's difficult to really plan anything since we don't know when chemo will start or which type of chemo, etc. Thanks for your perseverance in waiting it out with us, we really don't usually know much more than you! Thank you again for faithfully praying for Ava and the Lee family!

Monday, April 7, 2014

Successful Weekend!

The Bone Marrow Blitz was a success this weekend! THANK YOU to everyone who helped out, registered, supported, prayed, signed up online, spread the word... each of you made a difference. Because of your efforts, 333 new people were added to the marrow registry! WOW! Thank you for blessing the Lee family with your contribution and love. May many lives benefit from your efforts!

We are also waiting to hear results about the bone marrow biopsy, as this will determine which type of chemotherapy Ava will receive tomorrow. I don't know if we will receive the news today or not, but I will also let you know that as soon as I hear.

For any of you looking to get out and move a little, you are still welcome to join Team Ava in the Be the Match Walk/Run this Saturday!

Thanks again for making our blitz a success!

Saturday, April 5, 2014

Process of Bone Marrow Donation

So with all the talk and promotion of various bone marrow drives taking place this weekend, I realize that I never talked about the actual process of donating marrow! I haven't received any questions about it, but that could mean that:

     1) you already know about the process
     2) you didn't know, but researched it yourself, or
     3) you felt hesitant and maybe too shy to ask!

So in case you fall under #3, here's a brief overview. According to "Be the Match":

Adult donors may be asked to donate in one of two ways:

Peripheral blood cell (PBSC) donation involves removing a donor's blood through a needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm.

Bone marrow donation is a surgical procedure in which liquid marrow is withdrawn from the back of the donor's pelvic bones using needles. Anesthesia is always used for this procedure, so donors feel no pain during marrow donation. Most donors feel some pain in their lower back for a few days afterwards.

I liken PBSC to getting dialysis. Be the Match uses this illustration:

PBSC is the most common method of donating marrow. It accounts for 70-75% of marrow donation today.

The less common form of bone marrow donation is through a surgical procedure under anesthesia.

Most donations happen locally. It's easier for them to have carriers deliver the bone marrow than to "ship" the donor somewhere. Donors never have to pay to donate, though this doesn't account for any lost time at work. However, according to Be the Match, many companies have donor leave policies and some state laws require employees to provide paid donor leave. The medical staff and/or bone marrow organization can also help advocate for paid time off by writing a letter to your employer.

A friend recently shared his story of donating stem cells just last summer to a patient in another country! After 12 years of being on the bone marrow registry, he said it felt like winning the lottery to get the call that he was a match!

He donated via PBSC and said the process involved several days. First getting injections to boost his body's production, then the actual donation process. (This was after he had physical exams/evaluation to make sure he was in good health, etc.) He said LifeSource was great in answering his and his wife's questions, taking the time to address their concerns. They followed up with him for the first 6 months to make sure he was okay! So be sure that they are equally concerned about the donor as they are about the recipient. They wouldn't put a donor at risk to save the life of a recipient - it just doesn't make sense.

I hope you are willing to consider joining the registry if you are within the age range and in good health! Please don't be shy about asking questions. Even if you are not in Chicago to attend a local drive, you can join the registry online by requesting a swab kit to be mailed to your home; just be sure to complete the kit and send it back!

And if you are unable to attend a drive or join online, we cherish the prayers and support that you have offered thus far and continue to offer. Each one of you plays a vital part on this journey. Thank you!

Friday, April 4, 2014

Test Results

Thank you for praying! Results of all the tests done yesterday:

  • CT scan was normal. No sign of fungal infection, and the mass that was originally present in the very beginning (found to be gone later) is still gone. Hooray!
  • Lumbar puncture (spinal tap) still shows no sign of cancer in the CNS system. Another celebration!
  • Bone marrow biopsy - the results showed the presence of some blasts, but it is unclear whether these are normal or cancerous. Since Ava just underwent chemo and had her bone marrow wiped out, the blasts found could be normal immature cells that will differentiate into normal white blood cells, or they could be abnormal, cancerous blasts. They need to do more tests to see what kind of blasts these are, and we should know the results by Monday. So, at this point, Ava will more likely start chemo on Tuesday. The same action plan stands: if cancerous blasts are present, they will start ALL therapy; if none present, they will continue with AML.
Please rejoice with us as we thank God for the good news about the CT scan and lumbar puncture! Thank you also for standing with us in prayer about the biopsy results as well as for God's guidance in Ava's care. We are so thankful for all of you and your faithful prayers!

Thursday, April 3, 2014

Day at the Clinic

Ava's been at the clinic all day. Her CBC continues to look good, including the white count and ANC coming up a bit. Her blasts remain at 0% (hooray!)

She drank her contrast dye without any issues (yay!), but was hungry while waiting the 2 hrs before the CT scan would be done to check for fungal infection. She will also have a spinal tap to check for any blasts in the brain/spine, as well as get her first bone marrow biopsy to check for any blasts within the bone marrow. (If you recall, the blasts have only reflected what's in her peripheral blood, not in the actual marrow).

Thanks for your continued prayers for healing, stamina, patience and favorable results of no blasts in the marrow or spine/brain, as well as no fungal infection or unexpected complications. Thankfully, Ava's platelets look good, so no transfusion needed today.

I'll update as soon as I hear more.

Update (5pm): Good news! Ava is on her way home after having her CT scan, lumbar puncture and bone marrow biopsy. Everything went smoothly, and it seems that they were able to get everything on the first stick! Results for all these tests may come back tomorrow, we'll see.

The plan: They will assess Ava's level of "minimal residual disease" (MRD), which shows any low-level cancer activity despite Ava showing no symptoms. If she does not have any MRD, then they will continue with the AML treatment since that seems to be working. If there is any evidence of MRD, then they will switch to ALL treatment as planned, projected to start on Monday.

If Ava's MRD is negative (no residual disease), she is considered to be in remission. However, it's impossible to predict if/when she might relapse. The doctor feels that a bone marrow transplant is a strong possibility because it took so long time for Ava's blasts to come down. Still, this will be reassessed as treatment continues. They will see how Ava responds to the (AML or ALL) chemo and look at the whole picture before deciding on a transplant - but at this point, BMT it is a strong option for Ava.

Thank you again for all of your prayers, and especially as we gear up for Round 2 of chemo. I will update the Google doc in the next couple days as we get a better idea of what may be needed. Thank you!

Wednesday, April 2, 2014


This was Ava's belated creation for St. Patrick's Day. She took out her pencil and filled in the blank for the prompt, "I feel lucky when..." With her trusty tongue sticking out for support, she carefully crafted the words, "you are with me."

No, My Love. Surely, I am the luckiest.

We read a book yesterday titled, "The Invisible String," about how the entire human race is somehow connected through the love we have for the people in our lives. It was also about death and how we are still tied by love to those that are not here on earth any longer. Ava turned to me and said, "So the uncle dies?" "Yes," I answered. "Oh, that's sad. But, I guess that's life," she replied.

I'm not sure how to process that. It seems off that my daughter, still merely a babe, is speaking of things that are even difficult for adults to accept. But she does so with grace and poise. Kids with cancer are amazing. They learn to face their fears early on. They stare Death, as black as night, straight in the face and they don't run. They press on toward the light. And sometimes they lose the battle but not after putting up a hell of a fight. They live their lives with abandon understanding that this moment, right now, is all that they are promised.

I used to be terrified of the night. I still kind of am. But I have this incredible memory of this one summer night when Mike and the girls and I went for a walk around the lake near our house. It was nearing twilight and we knew it was time to go. Ava spotted a tiny beach near the edge of the lake and looked at us with those eyes. We told her we'd go for just a few minutes because it was getting too dark. She ran down to the shore and urged us to play, to dig our feet into the sand, and to savor life. As I sat there watching their silhouettes and the moon shattering the surface of the water into a thousand diamond lights, I locked away that memory because it was so beautiful. Who knew that an unscheduled visit to a tiny beach on a dark summer's night could be so comforting to me one year later? Now all I want to do is go back to that day and linger a little longer near the water's edge to make more memories with my daughters peacefully playing in the dark with the full security that we are standing watch over them.

I think one of the best ways to describe this time in our lives is a season of night. We are desperately looking toward the morning because we are scared. But the crazy thing is, my five year old is not. She holds our hand through the darkness and shows us the glittering lights on the lake. She points us toward Christ and his loveliness even when things around us are ugly. Child, we see the beauty and the hope of Heaven through your life. Because of you, we have learned to approach this life with childlike wonder, and to laugh even when our hearts our breaking.

Surely, My Love, I am the luckiest.

Weekend Blitz!

We are gearing up for a "Bone Marrow Blitz" this weekend! We now have SIX bone marrow drives being held in honor of Ava! Locations include:

  • Saturday: Champaign-Urbana
  • Sunday:
    • Chicago
    • Wheeling
    • Deerfield
    • Rolling Meadows
    • Naperville
Please see "Marrow Drives" for more information about locations & times, and please spread the word! Thank you in advance for your prayers for the success of these drives. May many people register and become a life-saving match for someone in need, including Ava!

Round Two

Ava and Gwen wanted to play "Mommy" today. I got to be the baby. I love when they make me the baby. I essentially get to lay around for upwards of 10 minutes pretending to cry and fuss while they run around in circles trying to make me happy. The game was a little trickier today because they each had another baby doll under their care as well.

Ava: What's wrong, baby? Don't cry. Mommy's here. I'll be right back though, because I have to go help the other baby. (Begins to slip away)
Ava: Shhh, shhh, shhh. Baby, don't cry. Mommy's here. I'll be right back...I'm just going to...
Ava: It's okay, it's okay. (Then she stops, sits up, and her eyes get really wide) Wait a second, Mom. Time out. Is this what it feels like to take care of me and Gwen? It must be hard to take care of us at the same time especially when we are crying and fussing around.
Me: (silently patting myself on the back for being a genius and, yet, such a jerk at the same time)

It feels good to play and to enjoy light hearted moments with them. Things are slowly getting back to normal and even though we'll be pulled back into the world of sterile rooms and chemo drugs, today we had a good day.

Ava went to school for the first time in a month and even felt brave enough to take off her hat in front of her classmates. Her teacher, who has been monumental in lifting Ava's spirits throughout this time, did not stop flashing her beautiful smile at Ava-for sure recharging the strength she needs to continue the battle against cancer. Ava's principal, a great friend and someone Ava admires so much, solidified her confidence that people are rooting for her to kick cancer's butt like it "ain't no thang." In fact, the whole school has been pulsating with compassion and support for our family from day one. And we are humbled, sincerely bowled over by the love all of you have shown to our family. We are surrounded by exceptional people. We count it as one of God's mercies toward us as we trek through the shadows.

Today we had a good day. This equips us for the bad days and the hard days we will have in the future. We will certainly see some in the next weeks and months. But I have a good memory stored away for each difficult day we'll encounter and that will help in more ways than we can articulate.  You were a part of building our collection of praises. With all my heart, thank you for your friendship; thank you for your encouragement; thank you for your compassion, your generosity, your words, your prayers. We cherish you and you have made a difference in our lives.

Tomorrow, we will head to Ronald McDonald House for the night so that we can make it on time to our 8:00 a.m. appointment on Thursday. Ava will be getting a CT scan to see if they can detect a fungal infection. She has been on anti-fungals ever since the suspected infection two weeks ago. She will have to drink contrast before her scan. We are praying that she does not have an allergic reaction to the contrast and that she would be able to keep it down. (That stuff is nasty.) After seeing her doctor, Ava will go into the operating room to get her bone marrow biopsy and her spinal tap in one fell swoop. We pray that the doctors would be able to do both without difficulty or complications. Finally, if Ava's blood counts come back with good numbers, she will be admitted for another round of chemo. Thank you for keeping Ava in your prayers.

Round Two. FIGHT!