How Great Thou Art

I wanted to update as soon as we got back from Seattle but we were happily busy preparing for my baby cousin's wedding! This was a special occasion for us because my cousin is the most wonderful friend, auntie, nurse we know. I always embarrass her by telling people I used to change her diapers but I won't do that here...not on this blog where she'd be totally appalled that I mentioned it.

Instead I'm going to tell you about how good and kind and great our God is. When Sofi first started at Lurie's, I was so happy for her. She worked her butt off to be a nurse and she had everything it took to make a great one. She was compassionate, hardworking, patient, kind, and a little sassy. Ava and Gwen love her so it brought Ava much comfort to know that her auntie was working a few floors above where she was. Whenever Auntie Sof would pop in during our months in and out of the hospital, Ava would perk up even if it was just a little bit on some of her hard days. Auntie Sof was relentless in cheering Ava on and Ava would show her appreciation in squeals of delight or just quiet sparkling eyes on the days she was too taxed to talk. Their bond was strong.

So it was no surprise Sofi wanted all of her nieces to stand as flower girls in her wedding. Except we weren't sure Ava would make it because we were on our way to Seattle for the transplant...and we didn't know what the next day held for us, let alone a year out from there. That's why witnessing Sofi walking down the aisle and watching Ava and Gwen and all the other nieces walk before her dropping petals, made me want to bawl in utter amazement that the day had come.

God, how gracious and kind and overwhelmingly good you are to us. You have given us one more day, a new day, to celebrate good things in the lives of the people we love.

Thank you God for:
1) The Chang's, the Sim's, Princess Beth, and the Choi's for their friendship and overwhelming generosity and support during our time in Seattle. They housed us, fed us, entertained us, and provided transportation. I know I've said it before, but honestly, we felt like we were on a "Make a Wish" trip!

2) A stellar health report. The doctors could not find any physical sign of GVHD and released us to go home and return in a few weeks for our one year post transplant appointment. Wait, what?! Yeah, I know. No one can figure out what happened to Ava in Chicago but there was no evidence of any acute or chronic GVHD that the doctors could see. This is an AMAZING answered prayer!

3) Another unbelievable health report from Ava's allergist. Ava is potentially allergy free. This child who has experienced over 10 anaphylactic reactions and was even granted a Make a Wish trip due to the fragility of her health, who needed 4 epi-pens from a minute amount of cross contamination to wheat, who had an IgE of 20,000 when an average person has a level of under 100, this girl who Dr. Nadeau, one of the leading allergists at Standford, said she could not help because she had never in all of her patients come across someone like Ava, is now very possibly free of allergens...I'm still letting this one sink in.

4) A really fantastic trip out to the Pacific Northwest. It was the first vacation-like trip we've taken since her diagnosis, two years ago. I know we spent 6 months in Seattle for her transplant but that was the furthest thing from fun. Those months held some of the worst days of our lives. But, this time, we were able to visit Seattle without the emotional baggage of cancer and we are so incredibly thankful for that. We drank in God's creation from the mountains to the oceans with an unquenchable thirst for more. And, boy, how refreshing it was to be with each other and to finally put down our load and rest for a bit. Although we only had a few short days before the onslaught of appointments, it felt divine.

5) Ava's luxurious curly hair. It's beginning to grow back, in thick curly waves. She still looks like a boy and I'm sure her pink Toms throw everyone off but she doesn't care. I see the way she brushes that hair and my heart does a mini cheer. Thank you, God, for a crown of hair for my sweet girl. She told me that she was going to grow it as long as Rapunzel. Go for it, girl.

Please pray:
1) We have all come down with a chest cold. Gwen and Ava are struggling more than we are and we are actually concerned enough about Ava that we will be going to an unplanned clinic visit tomorrow. It's 2:00 am and I'm still up trying to keep vigil by her bed but I guess I'm not that dedicated because I'm going to sleep as soon as I hit "publish" on this post. I'm thankful to God who never slumbers and is a way better parent than I am!

2) We celebrated the really life changing news about Ava's allergies. But Gwen's allergies have actually worsened and she is beginning to look a lot like Ava did pre-cancer. We recently submitted our spit and blood for a look at our DNA and genes and all that scientific stuff. When we did that, last Fall, they found that Gwen's T-cells looked like that of a 60 year old man's. The doctors aren't sure yet what that means but they will be doing a case study on her as well as the one they are doing on Ava.

Thank you for your prayers. I am in awe every time I bump into someone who tells me that they have been keeping up with the blog and have been praying on our behalf. Thank you for loving us to the point of walking with us, even while you juggle your own life battles. Peace be with you and we continue to pray for you (His presence and peace upon your life) as well.

Marissa visiting us at clinic on Ava's birthday!

Gwen and Liz are twins. They are both...fierce.

Jude is practicing sitting up. It's not easy when your head is in the 95%.

I love these kids!

Oh you know, just another day of hanging out by the OCEAN. (Good one, Ryan.)

This is a park in Seattle...In Chicago, we are lucky to have like dirty swings. I mean, seriously.

I just can't even.

God, thank you for this family.

I blame the Korean in her.

Jude and Dad

Dr. Delaney, our favorite doc, and Ava

Another park in Seattle

We can't contain our happiness

Enjoying the Seattle weather that the locals keep lying about and telling us that it's rainy so that no one else will move there. (rant over)

Another park. Washington is a staycationers dream come true.

Do you see Mt. Rainier? Yeah, that was our view everyday when we lived on Mercer Island.

There are no words...I just love this family. And I love Liz, the innocent photobomber.

(crooked photo cred: Ava Lee)

Flower girls!

Jude is Ring Security with his cousin Jonah

My beautiful baby cousin

In lieu of wedding favors, Sofi and Mark made a donation to Be The Match in Ava's honor

Watching Sofi dance with her daddy. Praying that Ava gets to one day dance with her daddy too.

And...We're Back!

We got home from Seattle last night around midnight. There is so much to be said about Ava's visit but I wanted to make one special announcement first. At Ava's allergist appointment, we found that her skin did not react to any of the foods that had previously caused anaphylaxis. For those of you who were with us from the very first hospitalization due to anaphylaxis, you may remember the urgency with which we prayed for a cure. Who could have known that her rare leukemia, the aggressive and persistent disease, the inability to find a bone marrow match, and the resulting cord blood transplant would lead to an answered prayer? Not me, but His ways are higher than mine.
"'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...You will live in joy and peace. The mountains and hills will burst into song, and the trees of the field will clap their hands! Where once there were thorns, cypress trees will grow. Where nettles grew, myrtles will sprout up.These events will bring great honor to the Lord’s name; they will be an everlasting sign of his power and love.'" Isaiah 55:8-9,12-13

Ava's story is not fully written. God continues to reveal Himself and His plans for our lives. Yet, we will worship Him in the now. And we wIll celebrate His goodness today.

We spared no expense at Red Robin because there's no better way to say, "YAHOO!!!" than with a plate of Chicken Stickens and some seasoned fries.
‪#‎noallergiesforava‬ ‪#‎yourwaysarehigher‬

Red Robins celebration!

#homewardbound

We Are The Griswolds

We had a plan to seize the day. But by the time we got it together enough to venture outside, the day was almost gone. Why and how does it take so long to get out the door when you have children? I may never know. 

We had lots of ideas: the aquarium, the arboretum, visiting the hospital, seeing a friend, etc, etc. The sky was the limit! It was 3:00 when we finally piled into the car. As I turned out of the driveway (Did I mention that Mike lost his wallet in transit to Seatte?), Ava began to turn her nose up at a smell. 

"Did you fart, Mama?" she asked. Distractedly I denied it but I had been so absentminded these days, I wondered if I had accidentally farted without even feeling it. But then the thought occurred to me that perhaps Jude's constipation had resolved itself. I stopped the car, sniffed his diaper, and turned the car around to address this unexpected issue.

I left Mike and the kids in the car and assured them I would be right back. I should have known better. Jude is notorious for blowouts and he did himself proud at that moment. There was an inordinate amount of mustard colored material in his diaper and up his back. This was usually a two man job, but I had left the man outside. Stupid me.

I expertly maneuvered the onesie over his head but at the last minute he moved and his hair grazed the poop. Oh Lord, have mercy. At first I tried to rectify the situation with a wipe and the excuse that he's the third baby and there could be worse things than poop on his head. But then, I couldn't think of anything worse than fecal matter in his hair so I decided that he needed a bath. So, I gave him a bath...while everyone waited in the car...naively expecting me to be right back.

In no time at all, we were all back in the car with a freshly bathed Jude. That's when the sun decided to come out. It had been raining all day so we didn't think we would need any sun protection. I got back out and ran inside to grab sunblock and hats. Finally, we were on our way to fulfill our thirst for some real Seattle fun!

We decided to take a walk (drive) down memory lane and started toward the hospital. After missing a couple of turns, we began to finally venture into familiar territory. We picked up some food and chose to go to a nearby park to eat and play. As we drove by the Ronald McDonald house and the hospital, the memories came rushing back. It is unbelievable that just a year ago, we were here for an entirely different purpose. Ava was so sick and we were so scared. We drove down these same roads with the constant fear that our family would be irreparably shattered and that we would never be able to return without bearing a grief so heavy and suffocating that all the beauty in the world could not ease it. But we were here this time with a truly remarkable story and a future filled with brighter days.

It was really exciting to return to this park and to see it with a fresh set of eyes because the last time we had visited, Ava was on pass out of the hospital after transplant (pass meant that we could leave the hospital for 4 hours each day). She was so swollen and out of sorts from the steroids that Mike had to carry her out of the car and to a nearby bench. So while Gwen and I played on the swings, Ava sat miserably in Mike's arms looking out at the lake. I really wanted to see the girls running around the park today, reclaiming this place of sad memories with squeals of laughter. 

A couple of wrong turns later (this scenario was becoming familiar) we finally found the park! We parked the car and as soon as the girls put their shoes back on, because kids have this weird obsession with removing their shoes in the car, we noticed that smell again. 

The boy had soiled himself with another blowout. So we stripped him down and changed him for the second time. During Operation Blowout, the rain had begun to fall again. 

Okay, to native Seattleites rain is a non-issue. We witnessed this during our 5 month stay last year when we were laughed at for opening up an umbrella during a shower. We saw it again today when people were walking in the rain nonchalantly conversing with their friends as if they didn't notice the water pouring down their face into their talking mouths. I mean, they didn't even put their hoods on. Now, that's just showing off. If I daringly decided to walk in the rain, my hood would be on, my head would be down, and my mouth would be closed.

The rain meant that we could only stare at the playground from the car. But while we were doing that, we had a chance to reminisce and shed a few unexpected tears over how God has led us to a place of fresh water (pun may have been intended) in our lives and we were drinking in all of it with our eyes turned toward Heaven.

It was getting late and we told the kids we had to head back. "Wait, what? But we didn't even do anything. All I did was take a nap." Ava said. 

That was a fair assessment because she napped as soon as we got in the car so all she remembered was riding in her seat and waking up in the park. She missed out on all of our other adventures like getting lost. I guess that's what happens when you snooze...you lose. 

To salvage the day, we made one last stop to the mall. Besides the fact that we didn't do anything except buy a can of soda, it was actually really fun. Ava hadn't been in a mall in close to a year so it was a fairly novel experience for her. We had a good time walking around enjoying ordinary life. But the moment that I stopped, looked Mike in the eyes and said, "We are the Griswolds" was when I took Ava to the bathroom. Minutes later I heard Mike calling for me from outside the entrance. 

"Esther, Esther, where's Jude??" he shouted. Apparently, he never noticed that I took Jude out of the car and strapped him to my body. As he sat with Gwen waiting for Ava and me, he realized that there was a child he couldn't account for. And Jude did such a good job being unforgettable that day too. Poor #thirdchild.

We are the Griswolds. We set out to do some amazing touristy things today but instead ended up at the mall with a can of soda.

Mike and I don't agree on everything, but we do agree that life is easier when you set the bar real low.
#griswolds #nothingwentasplanned #planC

"So let us know, let us press on to know the LORD . His going forth is as certain as the dawn; And He will come to us like the rain, Like the spring rain watering the earth." Hosea 6:3.

#seattlebound

This post is so overdue and I apologize for not updating sooner but we have finally arrived in Seattle for our appointments with Seattle Cancer Care Alliance in regards to Ava's past two incidents. At the time, Ava's doctors in Chicago felt that her effusions were related to GVHD but since then Ava has been doing exceptionally well! So, it will be great to have the insight of our doctors in Seattle into what could be the possible causes. We hope and pray that she does not have chronic GVHD and is on her way to a full recovery!

The flight to Seattle was uneventful until the last 1.5 hours. That's when two kids decided to lose it. I won't publicly shame them but let's just say, I am not looking forward to the flight home. Maybe we will just have stay in this beautiful and temperate state. :)

We are settled in nicely and, once again, in awe of God's provisions. Our hosts have been generous and gracious to a point where I keep looking around wondering if someone's going to jump out and say, "Welcome to Make-a-Wish!" But, all joking aside, we have been in constant praise to God for his daily faithfulness to us.

It's hard to believe that almost a year ago when we arrived in Seattle we knew a handful of people which included my best friend from college and Mike's aunt, uncle, and cousin's family. This time around we have so many friends we want to visit that there is not enough time to do it all! How is it possible that during our hardest time we acquired the love and friendship of so many great people? The Sunday School answer, the best answer, the only answer is God.

Thank you for your prayers and your encouragement to us through emails, phone calls, snail mail, posts on FB, texts, and on and on. We also pray for you daily, asking God for his blessings to overflow in your lives and that you would experience how near He is to you!

#seattlebound

I'm not sure that this is safe. I'm not sure that I really care.

Waking up in the beautiful state of Washington.

Spending quality time with my girl, Gwen.

Going for a ride in Princess Beth's convertible!

Update from Facebook: September 16

It wasn't the easiest flight we've had. An Alaska airlines employee was waiting with a wheel chair for Ava and as we ran through the airport toward baggage, she turned to me and asked, "Are they all yours?"

"Yep, all mine!" I said in a tired voice as I glanced at our pitiful crew. I had one baby strapped to my chest with an unexplained rash spreading quickly around his mouth, a grumpy girl with disheveled hair, and one frail youngster quietly riding in the wheel chair.

Then she said to me, "You're so lucky."

Those three words melted away the current situation of cranky, hot mess. It stopped me dead in my tracks and opened my eyes up to how incredibly blessed I am for these moments I have with my little family. And I agreed out loud and, in the recesses of my heart, that yes. Yes, indeed, I am the luckiest.
#stopandgivethanks #beyondthankful
#arrivedatdestination


Message from Ava:

hello my frends i miss you guys love ava gwen and jude!

Message from Gwen:

dear chrchmebriwimisyu (Translation: Dear Church Members, I will miss you.)

August Facebook Catch-up!

August 14:

(Click on link to watch video!) ----> Laugh and Pray!

This girl likes to laugh and I like to interrogate. Today we took a video of both. If you're going through a tough one, take her advice and laugh and pray. Mine would be to draw up knees to fetal position and rock in a corner. Thank God she's an optimist like her daddy! We need more of those.
‪#‎dontgiveup‬ ‪#‎laughandpray‬


August 14:
Happy birthday to Ava! We are at clinic today for her weekly checkup. Thank you God that we are here. It means she is still fighting and going strong.

While watching Lion King from the hospital bed, there was a scene of a mama giraffe and baby giraffe. Gwen tells Ava, "You can pretend that's Mama and you...because it's your birthday." So smooth, Gwen! 😆
‪#‎generousgwen‬ ‪#‎gwensgift‬

August 15:
Chick-fil-A and Chipotle are the only restaurants Ava can eat at due to her food allergies. For a birthday treat, we woke up early (this was an act of love) and whisked her away to Chick-fil-A Deer Park drive-through to pick up breakfast. We were pressed for time because we needed to get on our way to clinic and had to take our time with the order so that we could explain the precautions needed for Ava and Gwen's allergies. Of course that is when we realized we both forgot to bring our wallets. So we, awkwardly and apologetically, said into the intercom, "I'm so sorry, we forgot our wallets. We will have to come back." The next words we heard were, "We would love to serve you."

Mike and I thought he didn't hear us and so we pulled up to let him know that we would be coming back for our order. And he repeated, "We would love to serve you. Don't worry about it. It's on us today."

This is why we love Chick-Fil-A and will be loyal fans forever. They didn't know that we were celebrating the very precious life of our little girl who had been battling cancer these past few years. They didn't know that the only thing she wanted for her birthday was a Chick-Fil-A date with mommy and daddy. They didn't know that today was a dream come true for us because just last year we feared there would be no more birthdays to celebrate...and here we were ushering in her 7th year of life.

Nope, they didn't know any of that. They were just doing that thing they do: taking care of their customers with a generous dose of God's love.
‪#‎loyalfans‬ ‪#‎chickfilacrush‬ ‪#‎ethanistheman‬

August 15:
Continuing the celebration with a cake that Auntie Patty made. Who would have ever thought wheat free, dairy free, egg free, nut free and soy free could taste so good? Thankful for every good and perfect gift from above!
‪#‎allergyfriendly‬ ‪#‎swimmingpoolcake‬ ‪#‎happyava‬

August 18:(Click on link to watch video!) ---->Jude Sleep Training!

Look at those bags under his eyes. Sleep training has not been going well. People say babies don't remember anything. But, I think Jude is holding a grudge.
‪#‎scarybaby‬ ‪#‎justsleep‬

August 19:
My heart sinks a bit that I am not sending my girls to school for the second year in a row because it is a sharp reminder that our lives are still reeling from the after affects of cancer. But, on the bright side, I can play "rabbit" with my girls and use all that teacher creativity to do productive things like make rabbit water bottles out of Jude's bottles. Clearly I didn't get a master's degree for nothin'.
‪#‎letsplaymama‬

August 20:(Click on link to watch video!) ---->Jude Sleep Training-Take 2

This is what sleep training sounds like at our house. There's no real crying. There's just regular intervals of yelling. I don't speak baby that well but I imagine he's saying something like, "Hey! Heeeeeeey! I can do this all night."

And all night he did.
‪#‎okyouwinjude‬

August 21:

(Click on link to watch video!) ---->Woot! Woot!

These kids keep me going when I would rather not.
‪#‎instantjoy‬ ‪#‎itwillonlygetworsejude‬

August 24:

(Click on link to watch video!) ---->Gwen singing

Okay. So here's the deal. Jack lost his sheep (or is it jeeps? 0:21 sec)...And Gwen is very concerned. I'm assuming she doesn't know where to find them. Has anyone see them? Keep in mind, we don't know who Jack is and how many sheep/jeeps are a part of this equation.
‪#‎itsmorefunifyousingaboutyourproblems‬ ‪#‎mixedupnurseryrhymes‬

August 24:

(Click on link to watch video!) ---->Use Expression-Bedtime story with Ava

Bedtime stories at my house are a little intense. Kate Cooper, is this your doing??
‪#‎useexpression‬ ‪#‎littlemissava‬

August 25:

Guess who is finally sleep trained?? Woot! It was not fun being at our house the past week or so. But the divine sleep we all encountered last night made it all good again.
‪#‎guuudlawd‬ ‪#‎justsleep‬ ‪#‎simmerdownchild‬

August 30:
This girl has come a long way. At the tender age of 2, her sister was diagnosed with leukemia. What followed was a stressful time of many days apart from her family and everything she knew. Looking back at my pictures and videos, I saw that just 2 weeks prior to Ava's diagnosis the girls were in their rooms reading bedtime stories and giggling before bed. Who knew that a few short weeks later, she would not know the comfort of getting ready for bed with her sister for a long, long time.

Ava has gone through dark places and times fighting for her life. But, this girl, she was drowning too.

I'm so thankful for the brighter days that we see up ahead. But, most of all, my heart flutters at how she pushed past the pain and struggled for her right to live, laugh, and grow.

You WON, little girl! And we couldn't be more proud of you!
‪#‎boss‬ ‪#‎cancersiblings‬ ‪#‎aintnothinggoingtostopher‬ 

‪#‎preschoolwatchout‬

Crush Cancer

"Mom, will radiation keep someone from wanting to marry me?"

(Breathe in. Breathe out.)

"No, of course not, baby girl."

Cancer still tries to swing its punches even when we've pinned it down. It doesn't just destroy the body, but it tries to get at the spirit too. I'm tired of defending my daughter against its blows. I hate cancer so much.

I'm so thankful for women like "Mary Tyler Mom" who has allowed her grief to become a breakthrough of hope by drawing attention to Childhood Cancer through her writing. We were so honored to have Ava featured on MTM's blog for today's edition in her 2015 September Series to bring "awareness into action" and to crush Cancer once and for all.

Please check out Ava's story and each of the stories featured on her blog for the month of September!

http://www.chicagonow.com/mary-tyler-mom/2015/09/avas-story-cancer-through-the-eyes-of-a-six-year-old/

Psalm 20

LABS ARE IN!

Thank you so much for your faithful prayers! Today's labs showed an increase in platelets and red blood cells! The scare of relapse is on pause for now and we are happily enjoying a really awesome joy filled evening!

Psalm 20 has become one of my most favorite Psalms. It is filled with hope and courageously asks God for victory in times of trouble. But victory may not always come in the way we imagined. Victory might look like defeat: like when a child relapses, or when a child dies. But we know we have the ultimate victory and we LONG for the day where there will be no more tears, no more sorrow. Amen!


Psalm 20
In times of trouble, may the Lord answer your cry.
May the name of the God of Jacob keep you safe from all harm.
May he send you help from his sanctuary
and strengthen you from Jerusalem.[a]
May he remember all your gifts
and look favorably on your burnt offerings. Interlude

May he grant your heart’s desires
and make all your plans succeed.
May we shout for joy when we hear of your victory
and raise a victory banner in the name of our God.
May the Lord answer all your prayers.

Now I know that the Lord rescues his anointed king.
He will answer him from his holy heaven
and rescue him by his great power.
Some nations boast of their chariots and horses,
but we boast in the name of the Lord our God.
Those nations will fall down and collapse,
but we will rise up and stand firm.

Give victory to our king, O Lord!
Answer our cry for help.


Praying this over Ava, Allistaire, Jude, Connor, Ella Joy, Sophie, Kelly, Jake, Lukas, and all those that are battling with cancer.
‪#‎riseupandstandstraight‬ ‪#‎heartsdesire‬

Go Gold!

Good Morning! Today marks the first day of September. It's a special month because it is a chance for us to bring awareness to Childhood Cancer! About 2 years ago, I didn't know much about childhood cancer because it hadn't wreaked havoc on my family yet. I could never have imagined that my girl, Ava, would be battling for her very life and that we would become a family dealing with pediatric cancer.

Cancer really stinks. But there is a special kind of heartache seeing a child wither away, tethered to a hospital bed with all sorts of lines protruding from her body to deliver chemical poisons (hence why it is called "chemo") to kill ALL cells, the good with the bad, moaning into the night with a pain that you can't kiss away, selecting a casket that is worthy enough to hold your greatest treasure...It's graphic and it's gory but it is also the truth.

Can we all agree that children should be given the best chance at life, the best treatments to illness, the best care that is possible? It isn't the case yet but will you help me stand in the gap by bringing awareness to the ugly truth about childhood cancer. If you have a moment, will you read the information on this site? http://www.kidsvcancer.org/facts/

There are so many statistics here that I couldn't outline them all on this status update. But many of them are shocking and devastating all rolled up and tied with a ribbon of sadness.

Here's one personal fact. Ava won't be able to have children due to her radiation treatment. Not only has cancer stolen parts of her childhood, but it will have a huge impact on her future too. Won't you help bring awareness to pediatric cancer so that we can find more humane ways to treat and cure children? I know I won't ever stop.

‪#‎pediatriccancer‬ ‪#‎gogold‬ ‪#‎forallthechildren‬