Thursday, April 23, 2015

Is This Real Life?

I had been working on a post since we arrived home from Seattle but my delay in finishing it up was because I thought I had enough time-more beautiful glorious time that we had gained through a very painful experience. But I'm reminded again, that we should not put off for tomorrow what we can do today. And for me that means kissing my kids more, reveling in their youth, telling my parents I love them, loving on Mike, calling up my friends, finding reasons to celebrate, expressing my gratitude and, of course, posting on this blog. :) Here is the post I was working on just days before Ava was admitted for a rapid respiratory decline- one of the scariest moments we've experienced since her diagnosis.
_________________________________________________Post begun on 4/9/15:

 I see that a healthy amount of people are still checking the blog for updates on Ava. I'm so sorry for making you hold your breath! While our days have been flying by trying to reconnect with people and acclimate back to the weather, the house, the community, I have a feeling you, good folk, have been waiting forever for a simple word on how we are doing. Thank you for being so faithful to us before, during, and now after the transplant.

I find myself often wondering out loud, "Is this real life?" as I walk through the day. It seriously feels like I am dreaming. On one hand, I have been gone from this place for what seemed like a lifetime and, yet, it's like we've never left. I appreciate that ability to seamlessly fall back into place to that infinitely glorious time when Ava was healthy and cancer was never on our radar.  And yet, as easy as it has been to jump back into a routine, there is this battle scar that remains from our experience that may never fade. 

Wednesdays are our clinic days and so we usually pack up the family to go together. As I walked the halls of the hospital today, I was hit with the thought that this place has become both my poison and my balm. I hate every reason that brings us there but it is the only place where I feel completely understood without having to utter a word. I have an instant connection with the parent that is walking alongside her child who is tethered to a pole with multiple lines protruding from his body. There's some crazy beauty in sharing a burden so heavily laden with the blood and tears that are shed over the cruel tragedy of childhood cancer. And while I would never want someone to go through this experience, there is comfort in knowing that people have gone through it and that my footprints on this path join in with the many people who have had to walk the same journey. 

So, while there is some amount of post traumatic stress from all that has transpired, the majority feeling is one of absolute awe that we have made it through this crazy whirlwind year of ups and downs with you by our side. I was recently interviewed by Be The Match, an organization devoted to finding a match for people who need life saving transplants, and the interviewer asked me what gave us the strength to overcome such an incredible obstacle. Undeniably the credit goes to God, our Father, who is always with us offering comfort, peace, joy, love, and every good thing even in the midst of our most trying moments. 

And then there was you. You fought alongside us. You cried bitterly for us. On bended knee you prayed through the night. You called, sent mail, coaxed smiles out of Ava, brought meals, lent cars and houses, gave hugs. You emptied out your pockets, you drove to see us, you learned new jokes to tell us. 

As I continued on about YOU to the interviewer, I began to cry. Because, really, this diagnosis of cancer was not a choice to us. It was given to us as the trial that we were ordained to go through. In other words, we did NOT choose this struggle. But YOU, you made a conscious choice. You chose to stand with us when it might have been easier to step away. The pain was wrenching at times, but I felt you there choosing to take the hits with us. I saw you shedding tears, putting together fundraisers, running towards us when our misery should have scared you away. You chose to stay quietly by our side when words seemed too weak to express the sorrow.  

I am in awe of the strength you exhibited, the chances you took to be present when life's storms hit us hard. It must have been hard to know what to say but you stumbled through it anyway. It must have been foreign to know how to express your grief and your support but you found a way to do it anyway. I am so incredibly thankful for every one of you. You are the true heroes, the strong and amazing friends we don't deserve. Thank you, thank you, a million times, thank you. 

On to the update!

How is Ava?
Ava is doing extremely well for a child that has undergone such a strenuous medical procedure. Roid rage, a term coined by shell-shocked parents trying to describe the horrors of steroids, has been a thing of the distant past. Ava is back to her chatty self and is drunk on life! She doesn't waste any time having fun and is usually up by 7 am to start the day. She continues to receive IV magnesium due to all the magnesium that her anti-rejection medication, Cyclosporin, causes her body to waste. This means that she still has her Hickman Line and will not have that removed anytime soon. She is on 11 medications daily. Symptoms of gut GVHD seem to come and go throughout the day so any day without stomach pain and diarrhea have us celebrating with high-fives. She spends her days playing with Gwen and helping out with Jude. The other day I was writing an email to a friend about Ava's need to avoid public places and forgot the term that was used in the hospital for being confined in the room. I asked Ava and she quickly piped up with, "captivity?" The word I was looking for was "isolation." So obviously she is feeling slightly caged up but we count it a blessing to be held captive in such a comfortable prison.

How is Gwen?
Gwen is having no problems adjusting to life back home. She has truly grow in maturity this past season. She has had to shoulder some deep and heavy burdens at such a young age. She's begun to lose her baby fat and is very adamant that things be done her way! The one thing that she struggles with daily is her recurring eczema. It has been particularly bad these past few weeks. She spends a good portion of the day scratching any part of her body that isn't covered up. We are also putting gloves on at night to keep her from scratching. It has been a challenge to keep her skin healthy so your prayers are much appreciated! 

How is Mike?
After a week of getting reacquainted, Mike...

And that is all I had before our life made an unexpected turn with Ava's health again.  It's a reminder that we are not guaranteed another minute of life. Babies grow too fast, parents age in the blink of an eye, and the years, the years they melt away. So I want to honor God with the time I have today. And I want to live in such a way that I would not turn back and see that there were too many wasted moments, too much regret. These are sacred times, right now, precious moments that I'll squeeze every drop of life out of. And I hope you do too.  

Ava on nasal cannula. She was not pleased with this contraption. Not pleased at all...

Ava on Bipap ventilation. Through tears, I kept saying she looked like Bane (from Superman). Stress causes me to make inappropriate jokes. Don't judge.

 Our rooming situation for the past 9 days. Looking back, I don't know how we pulled this off.

 Judy Mcdoodie--maybe time for a new nickname?

Gwennie visiting Ava for the first time in days. You can't tell in the picture but they are having a whispered conversation about IV's and shots while grandma prays over them.

Home at last. Jude is a healthy 16 pounds at 11 weeks! I think he is a stress eater.

Happy Discharge Day!

Just a few days ago, I wasn't sure this would happen but here we are marching out of this place hand in hand. I don't take it lightly that our family is able to sleep under one roof tonight. There are many families still fighting strong to make that happen so we remember them tonight.

Tuesday, April 21, 2015


Ava was discharged earlier this evening! She's just tapering off steroids (again), and finishing out a course of antifungal treatment while they keep an eye on her platelet count. Praise God! Thankful for your prayers.

Sunday, April 19, 2015

Off Oxygen!

Ava continues to do well and enjoys being out of the PICU. She apparently was taken off oxygen last night and has been oxygenating well on her own! Hooray!

What now? The doctors are trying to discern what medications to keep her on, since it's unclear what the cause of her symptoms were, and therefore which of the treatments helped. Ava's platelets have been decreasing, though that may be due to illness and/or medications, so they'll keep an eye on that. Ava already received a red blood cell transfusion while in the hospital.

Thanks for your faithful prayers!

Happy Birthday, Gwen!

Today is Gwen's 4th Birthday! Here are a couple of photos that Esther posted yesterday on FB:

Happy early birthday to my second born child. Last year, we celebrated Gwen's birthday in the midst of Ava's diagnosis and this year it is shrouded again in Ava's illness. But this girl, she smiles. Boy, does she smile bright and it shines a light into the darkest tunnels of pain and grief. So we continue to celebrate life because what is living if we don't revel in the small things like love, laughter, parties, and Hello Kitty.

This is Ava today. We are still searching for answers but in the meantime we are enjoying her beautiful smile! Thank you so much for your love and prayers.

Saturday, April 18, 2015


Ava is down to 1L of O2 on nasal cannula and continues to do well. The doctors are amazed, especially since there's still no definitive diagnosis as to the cause. Praise God! Thank you so much for your prayers. God continue to amaze us.

I believe Ava will be transferred out of PICU soon if she hasn't already!

Friday, April 17, 2015

PCP results

The test for pneumocystis (PCP) came back negative, so it's still unclear what the cause of Ava's symptoms are. It doesn't appear that she has fungal pneumonia, they don't believe she has bacterial, either; (not sure about viral)... so they need to discuss what treatment to keep Ava on.

However, on the plus side, Ava's oxygen supplement has been decreased, and they switched her from BiPAP back to nasal cannula for oxygen. These are all signs that Ava's oxygenation continues to improve, so thank you for your prayers!

Happy morning

I spoke with Esther briefly. Ava is on the 3rd day of being NPO (no eating/drinking), though she did get a little bit of IV nutrition yesterday (though hunger pains still remain). She is now getting oxygen through BiPAP instead of CPAP to match her breathing better.

Ava is overall looking better; she's happy, sitting in a chair (first time moving from the bed), and talking and everything! It's great to see. They hadn't talked to the doctors yet so I'll share any updates when I hear.

Please pray for continued protection on all Lee family members; no one can afford to get sick at this point and risk exposing Ava to anything else. However, being spring and allergy season, it isn't always easy to distinguish between allergy symptoms and illness. Thanks for your effectual prayers and love!

Thursday, April 16, 2015

From Esther

Ava is now comfortably resting while on the cpap. We are screaming and crying but also playing and laughing...the day is mixed with lots of emotions from tears that we see our little girl suffering to deep laughter when she says things like, "my face looks like a water bottle." Thank you for praying. We need them so much.

Worsening CXR and overview - updated

Thank you for your prayers; Ava continues to need them.

Her chest X-ray this morning (around 4am) looks worse than before. It's a mystery why she's declining so rapidly. While Ava was getting high-flow oxygen, she was still breathing sort of shallowly, so she was also getting BiPAP? (some kind of pulmonary treatment) every 4 hours -- this kind of mask that puts a little more pressure on her face and encourages/forces her to use the fullness of her lungs. (Not sure if I'm explaining it properly, but that's the gist as I understand it). Now, she is continually on BiPAP CPAP. It took Ava a while to get adjusted to it, but she is feeling okay about it now and her O2 sats (oxygen saturation) are at 100%.

What is going on?? This is what I understand are the possibilities:

1) Bacterial infection - Nothing seems to point to a bacterial infection, so it seems the least likely. Even so, Ava is on an antibiotic.

2) Viral pneumonia - the BAL yesterday should shed light on that.

3) Fungal pneumonia - again, the BAL might shed some light on it, but only if it yields a positive result, as it can give false negatives (meaning fungus might be present, but the test missed it). Because fungus takes a while to grow, the test results will take a while. In the meantime, Ava has been started on an antifungal. However, given how quickly Ava's lungs have declined, it doesn't seem consistent with a fungal infection.

4) Lung GVHD - It's possible Ava might be experiencing acute graft-vs.-host disease in her lungs. Steroids would be part of the treatment plan in this case (Ava was started on steroids), although the steroids wouldn't be helpful if Ava has fungal pnuemonia since they further suppress her immune system.

5) Lung damage (e.g. from radiation/treatment) - a possibility, though it's unknown. I don't know if Ava's rapid decline would be consistent with something like lung damage, but I really don't know.

6) Idiopathic Pneumonia Syndrome (IPS) - idiopathic just means that there is an unknown cause, and IPS involves symptoms that mimic pneumonia, but without presence of infection (thus, unknown cause). It is a very serious condition, and one that everyone hopes is not that case for Ava.

As you know, any infection in someone immunocomprised like Ava can be serious and life-threatening. Pneumonia is high on that list, being one to avoid, and/or to catch as early as possible. It is sobering to weigh the options now and find that the fungal pneumonia is what everyone seems to be "hoping for", as the other possibilities would be even worse.

Meanwhile, Ava remains NPO (no eating/drinking) in case they end up needing to intubate her. (No one desires this scenario). She had really dark stools and also coughed up some blood last night in her resistance to the bypass mask. 

Thank you for your fervent prayers for the Lee family.

UPDATE (1:10pm):
Ava is comfortable again now that she is on CPAP. The fungal test came back "undetermined", so they are running another test to specifically look for a pneumocystis, a type of fungus. It is common for no definitive results to come back... it's more that if a patient improves on antifungal treatment, it is assumed that the patient had a fungal pneumonia in the absence of any other definitive diagnosis.

Thanks for your continual prayers!

Wednesday, April 15, 2015


Things have quickly taken a turn south. Ava is in the PICU now on high flow oxygen. She can't even talk at this point, just coughing and saying she can't breathe. Her X-ray came back showing considerably more stuff than Monday.

It is a sobering reminder of how quickly things can change at the drop of a hat. Initially on Monday, they were going to send Ava home on antibiotics since she didn't seem to have any real symptoms. Thanks to God, a nurse decided for no real reason to check Ava's pulse ox, even though Ava wasn't showing any signs of difficulty breathing. That's when they noticed her low oxygenation and kept her overnight.

Thanks for your continued prayers.

Difficulty Breathing post-BAL

Briefly: Ava finished the BAL procedure, except she's having a lot of difficulty with her oxygenation. Her supplemental oxygen has been bumped up to 3.5 L but she is still having difficulty breathing. The PICU team (pediatric ICU) will assess her and see if she needs to be transferred there.

I will update more as I hear.

BAL tomorrow (Wed)

Ava will get a bronchoalveolar lavage (BAL) done tomorrow (Wednesday) to determine if Ava has a viral or fungal pneumonia. The procedure involves inserting a scope through the mouth/nose to the lungs, and injecting fluid to collect cells. The fluid is then collected for examination. The BAL is the procedure that only catches the presence of fungus 20% of the time and can also give false negatives.

Ava's oxygen saturation continues to be in the low 80's when breathing on her own, so she is getting a decent amount of supplemental oxygen (2.5 L). The doctors are also looking into the possibility that Ava may have some lung damage as a result of radiation.

As you can imagine, it's quite a juggle with 3 kids to care for, one being a newborn. Thanks for your continued prayers for Ava, as well as for stamina, rest and peace for the entire Lee family.

Tuesday, April 14, 2015

Preliminary Thoughts

At this time, it is not looking like Ava has a bacterial infection (if she has any infection). Nasal washes and cultures have come back negative.

The CT scan this morning looked much worse than the chest X-ray yesterday, though Ava's hydration status (e.g. if she was a little dehydrated) might affect what is seen on X-ray.

They are still working her up for any fungal infection. Apparently the procedure she will have only catches the presence of fungus 20% of the time, and it can also give a false negative. (Therefore, a "positive" result would be the most useful information, as it would confirm the presence of fungus).

There is also the possibility that Ava may be experiencing lung GVHD, which would be a big concern. If everything else gets ruled out, they will need to do a lung biopsy to evaluate the presence of GVHD.

Ava continues to be without fevers, but her oxygen saturation stays about the same (87-90%). This means that she's not quite getting enough oxygen just breathing on her own, so she continues to get supplemental oxygen.

That is the gist of what I understand at this point; I'll update more as I know.

Thank you for your continual prayers.

Monday, April 13, 2015

Admitted for Observation

I know Esther has been in the middle of a long post, wanting to update everyone on how things are going since their return home. Hopefully, she'll get a chance to finish that post sometime soon.

In the meantime, Ava was admitted earlier this evening for possible pneumonia. She was complaining of some chest pain and had a mild cough here and there. She also has had some vomiting recently, though it wasn't clear if it was related to medication or not.

Because of the seriousness of pneumonia in someone immunocompromised like Ava, it was recommended that Ava get checked out. Chest x-ray shows something that "might be" pneumonia?? A CT scan is scheduled to also rule out fungal pneumonia. She hasn't had any fevers, but in the clinic, her oxygen saturation was 87-90% which was surprisingly low, considering she didn't otherwise appear to be working very hard to breathe. Ava was admitted so they can observe her more and see if they can't figure out the cause of her symptoms. She was started on IV fluids and an IV antibiotic.

It's a much different experience this time around, since Jude is in tow. Mike is staying with Gwen tonight to take care of her skin which has been acting up a lot lately.

Thanks for your continual prayers for Ava and the family.

Wednesday, April 8, 2015

Catching up

Some recent FB posts from Esther:

(March 29):
First time meeting my girlfriends' babies. We missed out on a lot while in Seattle but, oh how sweet it is to look around and see the gift of life in the lives of my dearest friends!

(April 5, Easter Sunday):
Happy Easter! The gift of life is precious. Thank you Lord!

Jude baby at 2 months. We are smitten with this dude.

(April 8):
I love waking up to Ava giggling in her sleep. Sweet dreams, child.

You have brought us joy after a season of sorrow.

"...weeping may last through the night, but joy comes with the morning." Psalm 30:5