Friday, August 28, 2015

Some News!

We got some answers back today and while we still need to wait to see what Ava's labs look like on Wednesday, her Flow Cytometry showed no evidence of leukemia in her blood! Since we haven't done a bone marrow biopsy, we can't know for sure yet but these are reassuring results and we hope that we continue to get good news next week!

Thank you for praying and hoping alongside us for Ava's health. Dare we hope for a cancer free future? Yes, we choose hope and joy for as long as we have breath!

Thursday, August 27, 2015

Don't Want To Miss A Thing

Just like that, we are in a place of uncertainty again. Our clinic visit today revealed some abnormal labs. We are back on this roller coaster of emotions, at the edge of our seats, desperately wanting to get off safely, all five of us together. 

Ava's CBC showed that her red blood cells and platelets have dropped and there were also the presence of myelocytes and metamyelocytes which could mean anything from viral infection to relapse. It has been an emotional day as it often is when speaking of relapse. Ava's blood is currently on the way to Seattle to check flow cytometry which can give us a clearer picture of whether or not she has relapsed. As a result of this unexpected find, Ava will not have her Hickman line removed after all.

I've been such an insomniac lately. Maybe it was the horrendous bout of sleep training we had just gone through with Jude or maybe it was my restless mind filled with too many thoughts. Whatever the case, I was playing with my sweet girls the other day and I fell asleep in the middle of our game. I felt so profoundly tired that I could not help but close my eyes. I heard them playing around me and willed my eyes to open. But the next thing I knew, it was 4:30 in the evening and I had slept away our time together.

The Aerosmith song, "Don't Want To Miss A Thing" was always a little cheesy to me but now that I have my Loves, I can see its charm.

"Don't want to close my eyes
I don't want to fall asleep
'Cause I'd miss you baby
And I don't want to miss a thing
'Cause even when I dream of you
The sweetest dream will never do
I'd still miss you baby
And I don't want to miss a thing"

I would post the whole song because it is relevant in every way as I think about my girls, Ava and Gwen, but I think you get the picture. I don't want to miss one thing. I want to see them grow and flourish. I want to be the one that has to wait in Heaven for them to finish their purpose on earth. This is my desperate prayer.

Life is so busy, so many things to accomplish in any given day so we are unspeakably thankful for everyone who comes before the Lord on our behalf for the life of our girl, Ava. We have known love through these times by your kindness and prayers. Will you join me in the throne room for all those who are suffering?

"Here my cry, Oh God. Listen to my prayer. I call to you from the end of the earth when my heart is weak. Lead me to the Rock that is higher than I." Psalm 61:1-2

Hard at work on her legos. The apple doesn't fall too far from the tree-I've been known to stick out my tongue when concentrating

He has begun to roll. It is the beginning of the end of any peace and sanctity I have left

The crew at clinic

A day that will long be remembered

Famiy date night complete with movie and Chipotle

Right before her CT scan

Trying to be brave. Some tears were shed but even heroes cry

Monday, August 24, 2015

Change In Plans

Well, we are still here in Chicago so that was an unexpected but really welcome change in plans! We have decided to stay in Chicago and only travel to Seattle for the week surrounding her appointments. The plans have been a bit nebulous for some time now due to a lot of logistical factors but we are comfortable, at this point, with staying together as a family in Chicago. This is mostly due to the fact that Ava is running around, playing, and looking very well these days! Another reason why we have chosen to stay is because Ava will be getting her GVHD workup done at Lurie's which will consist of a series of evaluations that will check for any signs of the disease. By the time all of her results come in and are evaluated by both her Seattle and Chicago team we will be so close to our September appointments anyway. 

In any case, thank you so very much for your unfailing prayers and love for our family especially as we navigate the different issues that come up with Ava's health. And even though our plans don't always work out the way we envision, we truly have been cherishing the unexpected twists and turns because we know that God orchestrates our steps and we only need to follow. It does take a big load of anxiety and regret off our shoulders! 

Every day has been so filled with joy as we hear the girls laughing together and running through the house terrorizing their brother and their dog. I recently got so mad at the mess that they made in EVERY SINGLE ROOM of the house that I ordered it to be all cleaned up. I mean, I draw the line when I find packing foam in my really nice teacups. 

"But that's the nest for the hen," she said. And sure enough, there was also a little white hen that I didn't see, stuffed deep in the cup. And my anger dissipated and turned into wishful thinking...if only they would forever play under the table and near the china cabinet, slipping pieces of foam and other treasures into places I will unexpectedly stumble upon during a cleaning frenzy. But these days will also slip away and I tell myself this as I put the packing foam back into the teacup and shut the cabinet door. There will be a day that I hold my breath and peer into that same teacup hoping to find a piece of my girls' childhood and instead will just see a boring cup filled with only the memories of this crazy hectic life.

I tell my girls this as often as I can, that truly, these are the best years of my life. These loud, sleepless, chaotic, busy years of raising them have been my small tiny piece of heaven on earth and it makes me raise my hands back up to heaven, thanking Him for the gift of being their Mama. I tremble at the responsibility that is entrusted to me, but I laugh with delight at all the blessings that have flowed from the beautiful, mundane, and holy moments of life with them.

Thank you for your continued prayers! This week we ask for specific prayers for upcoming procedures and evaluations for the girls.

Tuesday: Gwen will be seeing an endocrinologist at Lutheran General to discuss the two cysts near her pineal and pituatary glands. 

Wednesday: Ava will have a clinic visit, a CT scan, and an ophthalmology exam to assess for any signs of GVHD.

Thursday: Ava will have her Hickman line pulled!!! YAHOO! I can't believe the day is finally here. This is the line that has served as a way to get medicine straight into her bloodstream. It was also how she was able to have so many blood draws this year without having to be poked. This is such a monumental moment for her as it is one step closer to being one-year post transplant. Ava is scared for all the future blood draws that will require pokes but we celebrate the milestone that she has reached!

Thank you again and again!

Wednesday, August 19, 2015

Seattle Bound-Take Two!

Firstly, thank you so much for all of your love and support and prayers! We know that we are remembered every night in prayer from the lips of the young to the old. It is still an amazing and humbling realization that we are held close in many people's hearts and that our struggle has not been forgotten. 

An update has been long overdue so thank you for your patience as we took time to sort out the details regarding our return to Seattle. We have an appointment scheduled for September 22nd but we are looking to go much sooner so that we can avoid any setbacks here with Ava getting sick or, worse, having another GVHD episode. With that in mind, we are looking to head out after she is evaluated at Lurie's for any evidence of chronic GVH. This should be completed in the next week or so (hopefully) and then we will be able to make more solid plans for Seattle. 

Due to cost and other considerations, we are still weighing out whether we will drive or fly to Seattle. Both have their pros and cons and we are continuing to seek guidance and clarity from the Lord. Thank you for praying with us that we would follow His steps in the big decisions as well as the seemingly small ones. 

The days have been long and sweet and we savor each moment we have with the kids. There is a bittersweet quality to it...wishing the days would slow down but thankful for each day that passes with us all together.

It is absolutely necessary to have your ID on at all times in this home because mama done lost her mind most days.

"Mama, take a picture of Jude holding my finger...and send it to my iPod." (Girlfriend, when I was growing up, the only way to capture a moment was to close my eyes and file it away in my brain.)

Just a girl and her dog.

Jude chattin it up with Ha-lah-buh-jee (grandpa in Korean.)

Gwen still fits in her 18 month Halloween costume. Recently her 4 year old checkup revealed that she was in the 1% for height...why even tell me that, doctor?

Thursday, August 13, 2015

Just Friend Me on FB

I am serious. If you are reading these posts and praying for our family, you are already a good friend! But, for those that would rather not get sucked into the all consuming world of Facebook, I understand. I will bring my FB posts to you. It is where I document all the fun stuff...because even though we are a bit wrapped up with cancer, we are still living life and experiencing God's goodness!

July 24:
Ava admiring Gwen's hair...

Ava: Gwen, I love your hair. Well, it's actually good and bad. It's good because it is really pretty but because it's so long, you are at risk for head lice.
#‎iloveher‬ ‪#‎sopractical‬

July 24:

The prednisone food rage has begun. Ava's newest craving is chips. She hates how ravenous she becomes but even in the middle of furiously chomping, I hear her small voice chirp, "Look, Mama! Gwen's chip looks like a heart!"

If you look for good things, you will find them.

She can't get enough of those chips and I can't get enough of her.
#loveisallaround #givethanksalways

July 29:

Ava lost two teeth in the last two days. This was the letter she put under her pillow.

"Dear Tooth Fairy, thank you for the wonderful gifts every time I lose a tooth and I know that it is really you Mommy and Daddy. But I love you no matter what. Love, Ava 😊"

Every time she reaches a new milestone, my heart does a little flip and clings even tighter to the hope that she's gonna be just fine.
#swoon #mylove #prayforavabright

August 1:

This is my life. Still, hands down, the best years of my life.
‪#‎myfacesaysitall‬ ‪#‎bigbabybigblowouts‬ ‪#‎thebestyears‬

August 4:
Gwen is growing up too fast. She's 4 years old but she often talks like she's 24. Here's what I mean...

Gwen: Mom, if you leave your kid at home alone, is it kid endangerment?
Me: Um...Yes...if the kid is too little to be left at home. How do you know that word?
Gwen: (Ignoring me) So if you leave your young kid at home, it's a crime. Right?
Me: You know so much. You sound so old!!
Gwen: OLD?? Do you mean older?
Me: ...That's what I meant. (spoken in a meek and timid voice because I'm scared I will make another mistake.)

But then she says things that make me feel like everything's gonna be just fine.

Gwen: I know something. I learned it but no one taught me. Not even God...You can eat poop. But it won't taste delicious.

Phew. She's just a normal four year old.

August 6:

Happy 6 months to Jude baby! You are just like your daddy-you smile through it all! I don't think you understand presents yet but I'm going to give you the gift of a round head. I promise to help you even out that flat spot you formed from months of laying around seemingly neglected because your sisters are more vocal about their needs.
#judebaby #6monthsalready #intheblinkofaneye

August 7:

While in the bathroom with Gwen, she turns to the changing table and says: look a daddy is putting his daughter in the toilet. 😦

Eek, the world is a terrifying place for a 4 year old who can't read and has limited life experience.

August 7:

Here we are celebrating Mike's 36th birthday together as a family at Lurie's infusion center for Ava.

This morning Mike asked me if he was turning 37. We are at an age where we don't remember how old we are and we just don't care. Ugh, it's a sad time. Lucky for him, he still looks like a teenager.

We've only been a family for a fraction of time but I don't remember life before them.

We don't have much but we have each other. And that's more than enough. Happy birthday to my favorite person, @mike lee! Let's party like we're 35 and get take out, watch a movie, and go to bed by 10:00. I love you!

August 8:

She has these crazy allergies that induce sneezes with snot. But she's just too cool to care.
#BOSS #soproud #noimageissueshere

August 12:

This life, so filled with brokenness, also has glorious moments of joy.
‪#‎mygodisgood‬ ‪#‎joy‬

Tuesday, August 4, 2015

Seattle Bound...Again

I've been holding off on this update because I didn't want it to be true, but it looks like we are heading back to Seattle. Ava needs to be restaged for GVHD and, if it is becoming a chronic problem, we know that she'll receive the best care in Seattle. It's hard not to be disappointed by her (lack of) progress but we are also incredibly thankful that we have the opportunity to seek out the best care for her. There is a doctor in Seattle that is a GVH Guru and many people from around the country have sought him out for their GVH issues. And while I have a lot of comfort in knowing that she will be in good hands, it still kind of sucks to be leaving home again.

This time around, Mike will be staying home while I take the kids to Seattle. My parents will join me because, God knows, I can't do it on my own. They continually lay down their plans, their retirement, their lives in order to serve me and my family...ugh, there are no words to thank them.

I also have not updated on the results of Gwen's MRI. While there weren't any obvious findings regarding the cause of her headaches, the doctors came upon an incidental finding of two cystic structures in her brain near the pineal and pituitary gland. Cysts are not cancerous and only need to be removed if they become problematic. But since the cysts are so near two glands, Gwen will be seen by a neurologist, endocrinologist, and (if needed) a neurosurgeon to discuss our course of action. Hopefully nothing more than monitoring will be needed. 

Thank you for your faithful prayers for us! If you would like to join us in prayer, we have a few requests that we have been giving to the Lord the past few weeks.

1) Wisdom for the doctors as they look for the cause of Ava's recent problems and wisdom to treat her effectively.

2) Strength as a family for the next few months that we are apart.

3) Safe travels as we drive out to Seattle.

4) All the logistics with relocating to Seattle again.

5) Wisdom for the doctors as they continue to look for the cause of Gwen's headaches and for how to deal with the two cysts in her brain.

We thank God for:
1) The chance to go back to Seattle for treatment
2) Ava losing 2 teeth this past week and for continuing to reach milestones
3) Ava's first sleepover and fun play dates these past few weeks
4) Gwen's ability to adjust to different situations fairly quickly
5) A chance to reconnect with our family and friends in Chicago
6) Getting Pippin back for a few months
7) The chance to celebrate Ava's 7th birthday in just two more weeks
8) Jude's continued good health
9) Being able to sleep in our own beds for the past few months
10) For the support, love, and prayers of all our family and friends

Thank you so much for following our journey and forever cheering us on!