Day 180

Today was an important day in Ava's BMT journey! She has reached 180 days post transplant and is doing better than ever. Her labs were drawn and sent to Seattle to see how much of her blood is her donor's. At this time, we are praying that we see 100% donor blood.

After 8 months of chemotherapy, Ava entered her BMT with a positive MRD. The first time she was MRD negative was right after transplant. Because her disease was so aggressive, we continue to pray that the cancer will never ever show up again to steal away any more time from her childhood, from our family, and from her future. Thank you for your continued prayers. Please continue to remember all the children that are fighting and those that have lost the long and hard battle against cancer.

Pictures courtesy of Kenny Nakai after initial diagnosis in March 2014

Facebook Catch-up

May 16:
I got word back that the CT scan of Ava's lungs revealed perfectly healed lungs!! Also she is off of TPN and back on solids with only a few episodes of vomiting.

Gwen's skin has cleared up so much and my chest X-ray has revealed no pneumonia! So the reunion with Ava and Mike may happen as early as next week!!

Soaking in all this good news. Thank you so much for the prayers--really so many of ya'll got some powerful prayers!

May 18: 

Home and reunited at last!!! Be still my heart.
‪#‎leefamily‬

May 18:
Please pray for the Beazley's. Nadia and I met in the parent lounge of Lurie's when both girls were hospitalized last summer-Emily for her BMT (Bone Marrow Transplant) and Ava for a virus amidst her chemo treatments.

We stood there and talked about how to get around our daughters' impending infertility as TBI (Total Body Irradiation) strips them of the ability to produce life. We discussed the possibilities of freezing the girls' eggs or even freezing our own eggs to give to our girls one day. And I felt some comfort, some camaraderie, that this lady understood my grieving heart at how much cancer steals from us...so very much.

Emily has fought long and hard. She is one of the sweetest, most brave girls I know. Nadia is an incredible mom who has always been selfless in her love for her girls. And, here she is again, having to be selfless in the most excruciating way possible by asking God to relieve Emily of her pain by bringing her home.

This is crippling news. And something that no parent should ever have to go through. But, please, go through it with them by standing alongside in prayer.

Shared from Nadia's post:
"We are losing our Emily. She is still paralyzed. I thought today would be the day, but this little girl is a fighter and came back to tell me how much she loved me, that I am the best mom that she could have asked for, and that she is so happy that she chose me to be her mom. She is not in pain anymore, but is struggling to breathe. Please pray that God brings her home to him, so she can dance in fields of flowers. And run and play with her friends Becca, Albert, and Sarah. And be greeted by my dad and her Nonna. This is heart wrenching to watch. As selfish as I want to be, I won't. I need God to answer my prayers! This is a very personal time for us, I ask you please to respect our privacy. I have shared her for four years, i need this time for me. I am spending every second with my baby. It hurts so much to imagine that I will never have another hug or kiss from my girl. Or hear her say "mommy" the special way that she does. This hurts so damn bad."

‪#‎ihatecancer‬

Hard Pressed But Not Crushed

In His time, in His time, 

He makes all things beautiful, in His time, 

Lord, please show me everyday, 

As You're teaching me Your way, 

That You do just what You say, in Your time. 

In Your time, in Your time, 

You make all things beautiful, in Your time. 

Lord, my life to You I bring, 

May each song I have to sing, 

Be to You a lovely thing, in Your time.

It's been 4 days since I've been able to play with the girls, take care of their needs, kiss their chubby cheeks, tuck them in at night...but what I miss the most is the simple joy of holding them close. On Monday, I came down with a terrible illness that left me bedridden and quarantined. Ava had to immediately leave for the Ronald McDonald House in order to keep a safe distance from whatever it is I had. Between my feverish dreams, I fervently prayed that Ava would not catch this because I knew her weakened immune system wouldn't stand a chance without intervention. 

Thankfully, Ava is doing well with Mike at RMH and has not shown any symptoms so far. She continues to struggle with keeping food down but I heard that yesterday she had an awesome 12 bites of dinner. It was enough to start another dance party---in my heart, at least. 

In the meantime, my mom has been holding down the fort by caring for me and Gwen full-time. I don't know what I would do without her...I stumbled out of the room the other day, disinfecting everything behind me, and got to the kitchen to ask for a glass of water. My mom took one look at me and said, "Your children should piggyback you around in your old age to thank you for how well you cared for them." My eyes immediately welled up. How could she, a woman who has served her family tirelessly, faithfully, thanklessly, joyfully, say this to me? I have made my mom cry many times during this season with my hasty and thoughtless words. And I am only a fraction of the mom that she is and yet her love blinds her enough to praise me. Wow. There is no one more biased than your parents-I have witnessed it first hand. The fact is, she is the epicenter of this family. She is the one that keeps our world in order, oftentimes sacrificing her own desires, commitments, and plans. I promise to take care of you as lovingly and patiently when you can no longer take care of yourself, Mom. I will come up short but I will try. 

I had the unique opportunity to witness what life looks like for Gwen when we are gone with Ava. Since I was in quarantine, I was still home and could hear her interaction with my mom. It was a sad scene as Gwen adjusted to being "alone" with just grandma. I heard a lot of crying and screaming fits but then, after the second day, it died down...almost as if she were resigned to it all. Ugh, it's like a hit to my gut to see my 4 year old learning to cope with being parentless. At one point, she sat near my door with her little knees drawn up to her chest and sobbed. This whole experience must have been so hard for my middle girl. She's had to grow up so quickly but I am thankful for my parents and for friends like Ms. Meg, who make her feel special and loved. 

Thank you for your faithful prayers during our post-transplant journey. We continue to wrestle with trusting that He will make all things beautiful in His time. But, regardless if we see the beauty in this lifetime or not and despite our lack of faith in the beauty of God's plan, His words remain true.  

I'm waiting eagerly for the day Ava gets to come back home. I know it's only been 4 days but, man, how sweet and beautiful it will be when the time comes for her to fly into my arms again. 

Prayer Requests:

1) Ava has a CT scan scheduled for tomorrow to see if her lungs are in a better state. This scan will also be more telling in regards to any lung GVHD or lung damage from radiation. We pray that the scan shows that her lungs are perfectly clear and healthy without any signs of damage. Ava is, also, still on TPN and needs to be able to keep down her food in order to come off of the IV nutrition. At her last checkup, her glucose was at a dangerous level of 40 so we are continuing to keep an eye on that.

2) Gwen's skin is still really torn up. I spoke with National Jewish hospital in Denver today to schedule an appointment to have her treated there as soon as possible. Prayers for all the logistics involved would be so appreciated! We are also doing some extensive lab workups so that we would find some answers and Gwen would find more permanent healing soon.

3) Jude and I are still sick and in quarantine. We hope to get better soon but MOST IMPORTANTLY we pray that we do not spread this to anyone, especially Ava and Gwen. And we just want Ava and Mike back home!!!

4) Mike and my mom have done a lot of the heavy lifting this week while still managing the things they are responsible for so please pray for an extra measure of God's grace and strength on them!

Thank you for loving us through prayer! 

Miss having these 3 monkeys in my bed! (Must teach kids how to open eyes when smiling.)

We Just Can't Hold It In

Ava is brave. So are all the kids that daily fight for one more day to dance. And you are brave for fighting alongside us. ‪#‎onemoreday‬ ‪#‎avasgotmoves‬

Click here to watch Ava dance her heart out!

Disjointed Complaints About Cancer

While preparing to leave Seattle, my friend, a fellow cancer mom, told me that going home was one of the harder parts of the journey. What?! How could that be? Home was the goal, the symbol that our lives could begin anew-a fresh slate. Going home was an indication that all is well, that the job is done, that there is nothing more they can do for her because she is in remission. But because we have been blindsided by cancer before, it is hard not to look over our shoulders waiting for the awful word indicating our fight is not over.

And so it is with many of the families that are fighting cancer. A day might start off normal and end in such wretched news. It is so jarring how a day can begin with normal life and end with terrible tragedy, all in the course of 24 hours. I have received news that a fair share of families have had their child relapse. There are no words to relay the desperation and hopelessness of hearing that the cancer will not stay away. It is exhausting to have to continually stay guarded even when the battle is supposedly over. But one thing we have learned from this tug of war between life and death is that every day is an opportunity to see God's goodness. I saw it today in Gwen's laughter, in Ava's excitement to play, in Jude's sweet smile, in Mike's love for me and the girls, in my mom's unfailing strength to serve this family. 

Yet it is still a difficult journey and this has been a hard month with Ava's sudden hospitalization a few weeks ago. She had been complaining of some chest pain when breathing. Mike wanted to talk to the doctors but I brushed it off. Chest pain? How would a child even know what chest pain was? Thankfully Mike reached out to our doctor in Seattle who instructed us to have Ava seen right away. The next day, as we got ready to go to clinic, Ava began to pack her bag just in case she would be admitted. I laughed at the idea. "You are not going to be admitted! You are fine, Ava!" I said. She looked absolutely perfect. When seen in clinic, the doctors had Ava slated to go home on a Z-pack for a possible walking pneumonia. Nobody thought it was anything serious. In fact, a pulse ox was not even ordered for her but one of the nurses thought it wouldn't hurt to get a reading. The flashing 88 shocked us. We waited a few moments because surely the machine was just having trouble reading her. A misread could happen at times and seeing that Ava looked completely comfortable, we had no reason to believe that the machine was reading her oxygen level correctly. But after a few minutes, it became clear that her O2 sats weren't budging from the 80's.

Ava was admitted that hour and a nasal cannula was placed to give her some supportive oxygen in order to bump her numbers back up to the 90's. That was Monday. By Wednesday, she was in the PICU with clear respiratory distress. The doctors couldn't tell us much except that they were very concerned at the rate of her decline, and that her life was in very real danger. Since all the tests were coming up negative for viral, fungal, and bacterial causes, they did not know how to most effectively treat her. By this time, she was on a respirator with 100% oxygen support and we were told that her future was bleak and they began to talk about IPS (Idiopathic Pneumonia Syndrome) a fancy name for lung failure due to an unknown cause. 

How could the week have started out so promising and have progressed to this state of desperation so quickly? We had just gotten Pippin back and the girls were so happy. I had just been the speaker at the Be The Match 5K talking about Ava's successful transplant. My brother had just departed after a weekend of celebrating Ava's return to Chicago. We had just begun to return to a normal life. 

As Mike and I sat huddled with Ava on her bed in the PICU, we found ourselves thrust back into the life we were so desperate to leave behind. With his head on my knees, I saw Mike's shoulders begin to shake and I felt the heat from his tears soak into the blanket resting on our laps. We were back in our nightmare, tossing and turning hoping to wake up to a better reality. And then Friday came and Ava began to climb out and out from the depths of her sudden illness. By Saturday, she was talking again and asking for food. She was taken off the BiPap machine and placed back on a nasal cannula and began to take sips of water for the first time in days. 

While Ava was walking the halls a few days later, we bumped into the doctor that gave us the grim prognosis just a few days back. "So you're saying that you don't know what it was and you also don't know how she got better so quickly?" I asked. "That's a fair assessment," she answered. But we would need to wait to see if lung GVHD or IPS was the culprit. Only time would tell if her lungs would slowly deteriorate, leading to respiratory failure in the future...What kind of sick, twisted game is this? There is no winner. You lose something no matter what. How could the same transplant that saved her life end up taking it later on? 

By Tuesday, we were discharged and sent home to try again at building a normal life from the pieces of what used to be. But to tell you the truth, I'm a paranoid mess. A whimper in the night, a confession of leg pain, a bout of vomiting, any and all of these things send me reeling back to fears of relapse, of failure, of the need to battle again. 

I am standing by as a family that I know prepares to say goodbye to their daughter because they have run out of options. My heart drops and stutters at the agonizing pain they have to endure in living out the last of her days. And though she is not mine, she also is. Because her story could very well be our story tomorrow. We are tightly bound to all the kids that are fighting and losing to cancer because they are our kids. We have done this for a long time and we have seen lots of kids die. We are seasoned enough to know that we are not above death. No one's story is written so that the final chapter can already be read. It is a reminder that my hope must be placed in something more sturdy than this temporal and unstable life. I long with every fiber of my being for Jesus, for heaven, for an end to this broken world and an ushering in of all things new, perfect, and eternal. Maranatha. 

These last several weeks have been hard for Ava. She has been suffering side effects from her anti-fungal medication. The biggest ones are her nausea and change in taste. It's so distressing to have her continue to reject all foods but cry and cry from hunger pains. She has been having trouble moving around and playing due to her lack of energy. She is sleeping a lot more and things have been quiet in the house. Reading about the side effects of these medications, makes me want to vomit. It is unethical to ask parents to inject their kids with poison. The very nature of a parent is to protect and shield her child from danger. But, here we are, asking Ava to trust us as we pump all kinds of toxins into her fragile body. If only my body could be the buffer but, alas, it doesn't work that way. So, instead, my heart gets a beating every time we have to look the other way and choose the lesser of two very evil things: cancer or toxic treatments masquerading behind the innocent title of "medicine." 

Gwen is struggling with severe eczema to her hands and body. The other night she ripped up her hands so badly that there were chunks of skin missing from her fingers and wrists. I quickly depleted our supply of bandaids in order to stop the puss and blood from getting everywhere. 

As for me, I have been fighting to look up when the sheer exhaustion of seeing my babies in pain drags my focus away from the delight and privilege of life. 

Thank you for remembering us and the many families who watch their kids suffer in the wake of cancer. Thank you for praying and also for allowing me to full-out complain into cyberspace (like a brat) when I should be counting my blessings. It's always beneficial for me to see my whiney words on paper so that I can let it go and begin again. 

"Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God."  Psalm 43:5

Catching up from Facebook

April 29:

I slept in 2 different beds, woke up at least 3 times last night and still slept more comfortably than this guy. I prefer not to sleep with Gwen because I like to breathe when I sleep and obviously she doesn't always let that happen.
#chokehimout #cosleepingwoes

April 30:
Coolest day ever!! Ava met her cancer twin, Father Luke, a priest from Singapore! He is visiting Chicago to finally meet his live donor match (hero), who also happens to be our friend Peter (Lily Mui). Father Luke was diagnosed with the same rare cancer that Ava had which makes it super duper special for Ava who had yet to meet a buddy that shared the same diagnosis as her. Another thing they share is the gift of more time on earth made possible by the selfless act of heroic individuals. Are you ready to be someone's hero? Please consider joining the registry or donating your baby's cord blood in order to save a life!!
#bethematch #giftoftime #savethecordbloodsavetheworld

April 30:

12 weeks today! Although 3 months is technically next week (May 5th) this big boy is doing us proud. At a hulking 17 pounds, he is still the most gentle and calm baby. He's laying on a blanket that was lovingly gifted to us by a mom who lost her precious daughter to cancer a few months before Jude was born. How she is able to serve and celebrate with us in the midst of her deep pain and loss is nothing short of a miracle. And it is something I have had the sad privilege of witnessing on this journey-that life is worth celebrating in the big and small things because life is a gift, a truly miraculous one.
#12weeks17pounds #loveneverfails

May 2:

"Mike, take a picture of me and baby boy so he'll know that I held him sometimes."

There you go, son. You are the third baby but you are loved.
#thirdsthecharm #judebaby

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.
‪#‎teamava‬

Discharged!

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.

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!