Update from Esther

Thank you for standing by faithfully and for waiting for word on our status here in the Lee household.

Ava:
Ava is resting comfortably. She has a pain button that delivers Fentanyl and Versed (2 types of pain killers) whenever she pushes it. She presses the button every so often but is noticeably in less pain. Her pericardial tube (the one going to the sac around her heart) was successfully manipulated and the rest of the fluid has been removed. The right lung is still draining although it looks like it has slowed down. There might be some fluid in the left lung but it was hard to differentiate that from the heart fluid so we may have a better idea with tomorrow's x-ray. Speaking of x-rays, Ava has received an x-ray every morning since Friday. When I brought this up to the doctor, he looked at me funny. It turns out, Total Body Irradiation already gave off a mini Hiroshima in her body so what's a few more rays? Still, doesn't make me feel any better.

The fluid has been looked at by the technician, the Transplant doctor, and, most importantly, the pathologist. The consensus is that no malignant cells have been observed but the fluid is still "abnormal" looking. A flow cytometry test will be done on the fluid tomorrow to confirm that, indeed, this is not a relapse. I can't tell you how much I desire this to be the truth. 

Unfortunately, relapse is not the only danger she faces right now. There are now 3 access points directly into her body: the drain in her side, the drain in her belly to her heart, and her Hickman line. At any point, if these lines pick up an infection, Ava would be fighting for her life. Gwen came to visit yesterday and, unbeknownst to us, she was very sick. We are desperately praying that Ava doesn't get sick.

True to Ava's character, she continued to make us laugh today despite her situation. After her procedure was done, she came back to the room high on drugs. She went on to describe how she was seeing double of everything. It is pretty hilarious. See attached videos. My favorite is the one where an excited Mike asks, "What does daddy look like?" And Ava looks at him for 3 seconds and says, "Ewwwww." Child, you are a comedian.

Gwen: 

Gwen had high fevers throughout last night and vomited all of the coconut ice cream she asked me to buy her from Whole Foods. She was devastated about the ice cream. I was devastated that she didn't make it to the toilet in time. We got Gwen squared away with a bath and some soup. At about 2 in the morning she was burning up again so I gave her more Tylenol. Laying by her side, I turned to look at her and found her staring back at me. Then she quietly began to sing the Alphabet Song. And even though it was kinda cute, I'm not going to lie, it was all sorts of creepy too. 

I had to make a choice as to which child needed me the most and I decided it was Ava. Gwen seemed to be in good spirits as long as we kept the fevers at bay with Tylenol. So I made the hard decision to go back to the hospital and stay by Ava's side with Mike. Last I heard, Gwen was still sick and was calling for me. (Wahhhhh.) I think when I grow up, I'll need therapy right along with Gwen.

Jude:

Jude, my big dude, has been doing well. Let's be real: all he needs is milk and a nice cuddle. Thankfully, anyone can provide that. So I asked my dear friend Sue to take on this project of milk and snuggles. She's my hero because she took my big baby and added him to her gaggle of girls and is taking him for the entire night. I could cry tears of joy but I'm afraid that I'm secretly carrying germs and my tears will fall on Ava's face and infect her. I'm so thankful that I get to potentially have some uninterrupted sleep on this hospital couch. Sorry, Jude, for not making you a baby book and for letting you go on sleepovers before the age of 10. I miss you but I don't miss you enough to pick you up tonight. XO.

Mike:

Mike is being the rockstar dad and husband he has always been. He and I make a pretty solid team, especially when it comes to cleaning up Ava's soiled diapers. Yes, my almost 7 year old is in diapers due to being immobile. It is very sad and smelly. He is also awesome at buying me donuts. He went to the donut shop for me twice today. (It could have been just once but he messed up my order the first time.) The best example of how awesome he is has to be when I told him I just can't watch one more minute of the new "Annie" movie. He was like, "Okay, that's cool. I'll finish watching it on my own time." He was being totally serious.

Me:

I'm doing pretty good. But, it doesn't really matter how I'm doing. Because I'm a mom and moms can't afford to operate off of feelings. Although I do indulge myself once in a while and cry my eyes out in the shower, then I dry off and keep moving because there are a lot of people depending on my sanity. I do pray that I am not sick. While face-timing with my good friend, I accidentally discovered a painful and swollen lymph node under my chin. I, then, made Ava's nurse feel around for it. I kind of forced her to. She didn't seem thrilled but I had to know what it meant. Apparently it means I could be sick. Please God, no. I was around Ava all day...

We covet your prayers. Even small whispers to God are precious. 

1) That we could have a definitive diagnosis tomorrow and begin treatment. We've been hanging in limbo for the past 5 days and the wait has been hard.

2) Confirmation that this is not relapse. And that the cancer, or other cancers, would never, ever return. Ever. 

3) That if it is GVHD, it would respond to treatment immediately so that we can get off the steroids as fast as safely possible.

4) That her CMV disease would be kept at bay. Tests have detected a small amount in her blood. And we just found a small cold sore on the side of her lip. These things spread like wildfire when the immune system can't keep it in check.

5) That Gwen would get better soon and that no one else would get sick, especially Ava.

6) That Ava's lines wouldn't get infected and that she would not get any other infection on top of whatever she is already fighting.

7) That Mike and I would continue to rely on God and not ourselves.

8) Wisdom for any difficult decisions we will have to make regarding Ava's health care.

I want to be selfish and ask for more and more but I am just so thankful if you utter Ava's name before the Lord. There is no way to repay your kindness but we hope to be there for you when the going gets tough. 

Thank you and we will update when we know more.

Ava is loopy.

"What does Daddy look like?"

Gwen visiting Ava

Ava receiving comfort from Gwen during intubation

 Ava extubated but exhausted

I don't even know

 Ava at clinic on Friday looking normal despite the fact that her heart was in serious danger from all the fluid buildup

 After emergent procedure to remove more than half a liter of fluid from heart and a similar amount from lungs