Tuesday, September 29, 2015

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.


1 comment:

mike sunu said...

praise God!

psalm 92
It is good to give thanks to the LORD,
to sing praises to your name, O Most High;
to declare your steadfast love in the morning,
and your faithfulness by night,
to the music of the lute and the harp,
to the melody of the lyre.
For you, O LORD, have made me glad by your work;
at the works of your hands I sing for joy.
How great are your works, O LORD!
Your thoughts are very deep!