Thursday, July 30, 2015

End The Struggle Against Dirty Dashboards and Childhood Cancers

Childhood cancer rocked our family to its core, and countless individuals lovingly poured out their generosity and support to help Ava get better every day. We will never stop appreciating everyone who has shared in our battle. You have inspired us to start doing what we can to help the many families also battling childhood cancer. The Ava Bright Foundation is currently being set up for this purpose. One entrepreneur and friend, Jason Song, asked how he could get involved as we get started. This has meant so much to us, and we wanted you to know about Jason's recent release on Kickstarter. We're excited for you to find out that it's about way more than the Car Caddie. Not only would you be getting an awesome product that dashes the dirt away from dashboards, but part of the proceeds will go to the Ava Bright Foundation in hopes of alleviating the struggles that families face while fighting against Childhood Cancers.

https://www.kickstarter.com/projects/1857279931/car-caddie…

Please check it out and spread the word!


Tuesday, July 21, 2015

Discharge Day!


Ava was discharged from the hospital yesterday after 11 days inpatient for GVHD related complications. Last night was our first night hanging out together as a family since going inpatient. It was sweet indeed. Gwen's smile says it all.
‪#‎simplejoys‬ ‪#‎dischargeday‬



Monday, July 20, 2015

Going Home!


While watching "The Lego Movie" together, Gwen turns to Ava and asks...

Gwen: Can you breathe better now, Ava?
Ava: Yes, Gwen.

Even though she's young, she is aware of all the things going on around her. What a burden to bear! Thank you for praying for both the girls!

Ava had her pericardial drain pulled yesterday and although it was painful and scary for her, we are happy that she is making great progress! The doctors are discussing discharge for either today or tomorrow!!
#yahoo #gottabustout #powerfulprayers




"Can I lay by your side, next to you. And make sure you're alright, I'll take care of you. And I don't want to be here if I can't be with you tonight." - Lay Me Down


Friday, July 17, 2015

Oncology Floor

Ava is out of the PICU now and on the oncology floor. Her drains are still collecting some fluid, though much less than before. She is otherwise in good spirits. Thanks for your prayers!

Thursday, July 16, 2015

Transfer from PICU Soon

Thanks for your patience. Reception has been poor at the hospital. Here's an update from Esther:

Ava is still in the PICU but hopefully we will be transferring to the Oncology floor as soon as a bed opens up. In the meantime, Ava had her chest tube pulled yesterday. The tube was pulled while she was awake and it was very scary for her. After that was done, she fearfully asked us how the pericardial drain would be pulled. The doctor told her that they would remove it the same way: a quick yank. She did a double take at the doctor and looked down at her tummy where the tube was protruding from and said, "But this one looks serious." The doctors couldn't stop laughing.

But in all seriousness, I wouldn't want a line that is connected to a space near my heart yanked out either. Prayers that my girl would continue to be brave even in situations that would make grown people cry. It looks like the fluid production is decreasing and Ava has begun her steroid treatment along with a medicine called Coltrazine.

I just talked to Mike and he informed me that Ava has not been breathing regularly in her sleep due to the large amount of morphine she is on. The nurse noticed that Ava was oxygenating around the 70's while sleeping because she wasn't remembering to breathe. She is back on the nasal cannula to make sure she is getting 100% oxygen while she sleeps. We pray for a smooth transition out of the PICU and that there would be no signs of long term damage or chronic GVHD down the line. And, of course, we pray that the cancer would never ever return. Thank you so much for your continued prayers!

Wednesday, July 15, 2015

GVHD!

From Esther's FB:
Sorry for the late update but flow cytometry tests have revealed no evidence of disease! We are beyond thankful for this news. We will be treating Ava's issues as GVHD and will move ahead with steroid treatment. She will be on the same dose as she was previously on with her gut GVH. Thank you for interceding on our behalf!
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Praise the Lord! Although we prefer that Ava could avoid going back on steroids, we celebrate that her symptoms are not due to relapse! We rejoice together and thank God for your prayers and support!

Your continued prayers for a relatively uneventful recovery and quick taper off steroids is greatly appreciated!

Tuesday, July 14, 2015

I Will Come Back For You

Just a few days ago, I was planning my life forward. I looked at my calendar and saw 3 weddings to look forward to. I looked toward November wondering what adventures we would go on once Ava celebrated her 1 year post transplant anniversary.

Now, I am here. In this place again. Where only the moment counts. Only this TV show I am watching with Ava matters. My immediate plan is walking three feet to the bathroom to retrieve the bed pan. Ava's desire to eat mandarin oranges is my number one priority. The pain in her side occupies all the space in my mind leaving no room for planning for the future. Waiting for the doctors to bring news that will either devastate us or give us hope is about as far out as I can think about. 

I had a dream last night. It was a nightmare really. In my dream, I held tightly to Jai with one hand and to Erika with my other. We were on our faces crying and wailing and pleading with God. We were asking that he spare our daughters' lives. You see, these women were the friends I met along the way of this horribly sad journey. They are the beauty among the ashes. And Erika, just lost her daughter to cancer yesterday. If only that part were also just a dream.

Mike is here to change shifts so I get up and walk, one step at a time into humid, balmy weather. I forget it is Summer because the air inside the hospital is cold and stale so my mind is prepared for Winter but, no, it is Summer. There is life all around me. Everyone has a place to go, somewhere to be. This reminds me of my mission. I need to go home and take a shower, to wash away all the impurities of the PICU and to wash my mind of the dark places it wanders into. 

I think of my friend Jai, and the wilderness she is in right now with her precious girl, Allistaire, fighting so so hard for a chance to grow up and to experience life. Instead of running around, breathing in the summer air, she is confined to a room waiting one second, one minute at a time for this disease to go into remission. I think of Jai often and of the hell that she has been through. She has resided in this hellish place for years. (She writes about her daughter's journey at www.conglomerationofjoy.com). And even though Jesus is there holding her hand, she is indeed still in a dark place. Is this theologically correct? Can you be in Hell even though Jesus is present? I'm not a theologian but I want to understand the secrets of scripture better. Because I am a broken mom trying to stand up under this trial and not lose my faith so I need to know.

I'm passing by a homeless man and he calls out to me. It snaps me back to reality. I'm annoyed that he interrupted my thoughts but I'm also curious as to how he saw me. I'm but a mere shadow in my mind, a shell of a person. I forget that I am in this physical body that reeks of hospital smells. It reminds me that I have to keep stepping on toward my goal: a shower.

But my mind wanders again. I think of the other children. Jai has a beautiful daughter, Solveig, that she rarely gets to see because Allistaire receives treatment in Seattle while Solveig stays in Montana where the family is from. They are separated by this Cancer life and Solveig needs continue to go to school and to thrive and to live. For we must live even when others around us die. Because even though we would rather die, we must live on for those around us. That is the cruel reality of this life, that life must still move on even when other lives have come to a halt. We will still plan for tomorrow's meal, tomorrow's vacation, tomorrow's event, even when our hearts have died with yesterday's diagnosis.

And what of these other children that wait for normalcy while their sibling receives treatment? They are in their own abyss, calling out for their parents, their family to come back. It is like all the children are thrown to sea, and thankfully some have life jackets on. Who will I swim to but the one that is drowning without any salvation in sight? I will tread away from my other screaming children, praying that God protects them, while I race to rescue the one that is alone and dying. But I shout back at my children tossed by the sea, that I will return. I promise that I will come back for them. 

I've arrived at the RMH and I am met by an overly excited Gwen. She attaches herself to my leg and doesn't let go. I convince her to let me take a shower but first I lay down to nurse Jude. He has just arrived home from spending the night at my beautiful friend's house. She gave me the greatest gift last night: safe harbor for my youngest one. I nurse him and relish the round part of his head and even the flat part that he has developed from hours of laying down neglected while we pace about helping the kids that are more vocal. 

Then Gwen begins to speak to me. 

"Mama, I love the coconut ice cream you bought me. I only ate one today. But I love you more than I love the coconut ice cream."

Then she begins to lean in close to Jude. 

"Gwen, be careful. You are still sick. Please don't get too close to the baby."

"Mama, when I get all better, I will kiss you and kiss everyone. When Ava gets better, we will all go back home. We will all be a family again."

I digest this sentence and pray that it would be so. I get ready for my shower and slip into my porcelain sanctuary. I sigh a sigh of relief. This time is for me; it's all mine. Then I hear a knock.

"Mama, can I come inside?"

Of course, she wants to come in and spend time with me even if we are separated by a curtain. She peeks in.

"Look at all that soap on your head, Mama. Where is that shampoo from? Did daddy bring it from home? Ow, I hurt my toe on this tub. Are you going to say, 'Be Careful, Gwennie?' I don't even know what I am saying, Mama. I'm just talking and talking."

But I know what she is saying. She is asking if I hear her. If I see her drowning in the dark waters. We are looking to the shoreline together and we can imagine reaching it and she has on her life jacket. But she is scared and she needs me too.

I'll allow myself to make one plan outside of this moment by moment living, and that is to get back home. We are waiting, waiting, waiting, in this seemingly endless black sea. 

But don't worry, my sweet girl Gwen. I hear you calling. Hang on tight. I will come back for you.

Monday, July 13, 2015

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.

video
Ava is loopy.

video
"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





Pericardial Catheter Placement - Update

Last I heard (which was around 10am), Ava was next in line to get her pericardial catheter manipulation or replacement. (This is the catheter to drain around her heart). She had more fluid this morning and not much drainage, so this procedure is necessary.

No more information yet as to potential causes. Thank you for your prayers!

Update @ 4:20pm:
Thankfully, Ava's pericardial drain only needed to be manipulated in order to get all the fluid to drain properly. However, Ava's CMV virus has been reactivated, though it is currently at a low level. You may recall that the CMV is the dormant virus within Ava that, if activated, will need to be treated and watched to ensure that it doesn't disrupt her health or overwork her immune system any further.

No other news to report at this point.

Sunday, July 12, 2015

Feeling Worse - Update

Updates from Esther this morning:

We are still in the Pediatric Intensive Care Unit awaiting more answers. Ava hasn't been feeling stellar this morning and is complaining of pain where her tubes are located (one in her abdomen and one in her side). There is still some fluid draining from both sites. Yesterday we were told that there were a lot of eosinophils in the fluid from the heart. Thank you for prayers.


Here we go again with being NPO (no food or water) because the X-ray was suspect for some fluid buildup around the left lung. They may have to put in a tube on the other side. Ava is already asking for food and water. I have seen kids decline so quickly here in the ICU. Praying praying that my girl gets to bust out of here as healthy as can be.


***************

Your faithful prayers are greatly appreciated as the doctors continue to figure out the cause of Ava's fluid buildup.

Update:
Ava was taken off NPO status earlier this afternoon, so she can eat and drink again. However, unless the fluid around her left lung (and some around her heart) drains on it own, Ava will have to be NPO again starting midnight so that the doctors can go back in and manipulate her line in attempts to improve drainage. It wouldn't be ideal to insert a third drain, and Ava continues to have some intense pain from the drain tubes she already has anyway.

In the meantime, Gwen has come down with a fever and headache, so your prayers for her quick (and contained) recovery are greatly appreciated. In addition, please pray that Ava will not catch any additional germs! Thank you!

Saturday, July 11, 2015

Smiling Ava

Thank you for your continued prayers. Ava has been extubated (meaning the breathing tube has been removed so she can talk and drink and eat some Jell-O), though the tubes to drain her fluid are painful, so she has medication to manage that pain.

We may not have answers for another couple days as to the cause of Ava's fluid build up around her heart/lungs (pericardial/pleural effusions).

In case there has been any confusion around terminology used, "relapse" = leukemia. (And it's entirely possible that I've used some incorrect terminology elsewhere, but I'll do my best to correct!) If Ava's fluid is due to relapse, that means the leukemia is returning, which of course would be devastating news.

While the slides don't definitively reveal the presence of disease (i.e. leukemia), Ava does have some abnormality which hasn't been identified yet. It's possible that while her numbers (meaning blood counts/levels) don't suggest leukemia, it just may be something that isn't seen yet in the labs...

It seems that they have ruled out infection, so the only other remaining possibility being considered is GVHD.

Thank you for your prayers for Ava and the Lee family! It sure is nice to see Ava's smiling face (below), but we know that inside her precious little body, big battles continue to be waged. Thank you for standing with us!
************
(From Esther):

This is Ava now. Jehovah Rapha (The God who heals), has heard our prayer. A total of 550 ml of pericardial fluid was taken from around the heart and 500 ml of fluid was removed from the chest. Ava was extubated and is resting comfortably now. We are still waiting for firm results which may not be available until he beginning of the week. Thank you for standing with us and falling on the floor with us in prayer and support. Ava had her first drink in 2 days and what a wonderful moment it was to see her thirst quenched. It was wretched seeing her call out for food and water and have to deny her those things even if it was for her good. It reminds me of God's heart for us-how when it seems like he is withholding my greatest desires, he has my best interest in mind. I can't see it most of the times; just like Ava can't understand why we are keeping the basic needs of life from her. But she trusts us and with her tear stained cheeks she looks deep into our eyes, nods her head, and trades in her fear for an immovable trust. God, teach me this truth and many more.

Still Determining Cause

They are still trying to determine the cause of Ava's fluid build up. Here's a post from Esther:

Doctors just rounded and we are experiencing some emotional ups and downs. The first team rounded and said relapse was high on their list. Five minutes later, her transplant doctor came by and said that the slides do not show evidence of disease but will need to be looked over by a pathologist. However, her counts have dropped overnight so we will continue to be on watch for any signs of relapse. In the meantime, there are many tests being done to find the cause of the effusion. We ask for prayers that this is not a relapse. Thank you so much.

Friday, July 10, 2015

Fluid Around the Heart - Update #3

Ava went in for a regularly scheduled appointment today. She has been complaining of not feeling very well and having difficulty breathing. However, albuterol (inhaler) hasn't really helped, and her pulse oxygenation seemed okay.

Fortunately, they decided to do a chest X-ray. The X-ray revealed a large amount of fluid around her heart and partial lung collapse from the fluid buildup. They are doing an emergent procedure to drain the fluid (which may be finishing up soon?) The fluid is putting a lot of pressure on her lungs and heart and also making her heart work much harder.

At this point, some potential causes they are considering:
   1) something viral - a virus could cause fluid buildup, but the initial viral panel came back negative, so this seems less likely
   2) leukemia - it's possible that the fluid is a result of active leukemia, but Ava's numbers have been pretty good so this seems less likely
   3) GVHD of the heart - perhaps the most probable (?) is that Ava is experiencing graft vs host disease of the heart.

You probably recall Ava's battles with GVHD of the gut, and the difficult road of being on steroids. The steroids are there to help with the GVHD, but adds to her state of being immunocompromised which in turn may allow dormant viruses within her like CMV to become active, should they be triggered... there are other things that get more complex should Ava be started on steroids.

Thank you in advance for your prayers.

Update from Esther @ 8pm:
I can't even explain the fear and heartache. 500 ml of fluid surrounding Ava's heart was just drained. She is still intubated and sedated so that the fluid from her right lung can be drained. Doctors say she was experiencing cardiac tamponade and without the swift measures we took today, her heart would have stopped. We thank God her condition was treated in time. Please, continued prayers as we search for the cause. They can range from viral to GVHD to relapse. Thank you so much for carrying us. I feel like shriveling up and dying but feel the power of your prayers.

Update #2 from Mike @ 10:20pm:
A couple times, Ava broke out of her sedation. So they increased the medication. But even after that, she woke up and was agitated. It seems that the tube induced the gag reflex and she threw up quite a bit, about four heaves. The nurse immediately suctioned the tube, hoping that there was no aspiration, which can lead to a pneumonia.

Her breathing sounds pretty clear, and they increased the medication further so she's sleeping. Still waiting on the chest tube to be put in so that her the fluid around her lungs can be drained.

Update #3 @ 12:35am:

Ava is stable. Almost 3 additional cups of bloody fluid were collected from the drain around Ava's heart, but that has thankfully stopped flowing. A chest tube was placed to drain fluid from Ava's right side, with well over a cup of yellowish fluid already collected. The chest tube will hopefully finish draining soon as well. They will get another chest X-ray in the morning.

Fluid from both drains have been sent off for testing. While they do not suspect any bacterial/viral infection, it can't be ruled out until the test results confirm this.

Please pray:
   1) for Ava's full recovery
   2) that the cause of Ava's cardiac tamponade would be discovered so that it can be properly addressed and not happen again.
   3) for no worsening/lasting effects of radiation despite Ava getting her 4th chest X-ray tomorrow in less then 24 hours.
   4) for Ava's comfort - being intubated, she can't eat or drink and has called out for water. (I'm guessing this was before they increased her medication to keep her adequately sedated). The best that Mike and Esther could do is apply a wet sponge around her mouth. However, the medications to keep her sedated should help.
   5) for all members of the Lee family as they navigate through another upheaval.

Thank you!