Ava started radiation on Wednesday. She will continue to receive it every day for the next 16 days (excluding weekends) with her last scheduled dose on June 20th. However, there is a maximum cumulative amount of radiation that Ava can receive, so it's possible that she could finish radiation earlier than June 20th if she reaches the max before then. For example, Ava's measured exposure from today's radiation treatment was more than originally estimated due to her smaller size.
In the meantime, the plan is for Ava to get another round of nelarabine starting next week, so she will receive both treatments concurrently.
Please continue to pray for successful remission! As Esther mentioned in the previous post, they are seeing evidence of disease shrinking! We continue to pray for this work to be complete! To God be all glory; may we continue to praise Him in all circumstances as we trust Him to care for us. May His power be perfected in our weakness. Thank you for your faithful intercession.
Friday, May 27, 2016
Wednesday, May 25, 2016
WOAH
WAIT!! Hold the phone...
It looks like Ava is responding to Nelarabine! She's been known to be a late responder but this is such an unexpected surprise! I'm not sure yet how, or even if, this will change our next steps but I will update as soon as I know. Thank you, Father! Thank you for your prayers!
It looks like Ava is responding to Nelarabine! She's been known to be a late responder but this is such an unexpected surprise! I'm not sure yet how, or even if, this will change our next steps but I will update as soon as I know. Thank you, Father! Thank you for your prayers!
Ava had her first day of radiation today! I'm so thankful for the whole team that worked together with just one goal --frying Ava's cancer.
In the midst of all the hard stuff, we have so much love surrounding us. Thank you for loving us, praying for us, supporting us from near and far. We felt God's peace today in the small and big things. It wasn't easy for Ava to stand alone in the room, blinded by the lead goggles, but she was fierce and even with tears streaming down she stood her ground.
She is one of only a dozen children that have received this type of radiation. If it works, it may be helpful in finally designing a protocol for children with leukemia cutis. We pray that it is so.
In the midst of all the hard stuff, we have so much love surrounding us. Thank you for loving us, praying for us, supporting us from near and far. We felt God's peace today in the small and big things. It wasn't easy for Ava to stand alone in the room, blinded by the lead goggles, but she was fierce and even with tears streaming down she stood her ground.
She is one of only a dozen children that have received this type of radiation. If it works, it may be helpful in finally designing a protocol for children with leukemia cutis. We pray that it is so.
This pretty lady is so amazing!
Getting ready for radiation. #likeaboss
Covered in My Little Pony stickers to measure the amount of radiation to her skin.
So brave, so super, so fierce.
This team...when I see them running around trying to coordinate this difficult procedure, my eyes fill with tears. They are so wonderful and caring. Ava is blessed. We ask for continual prayers for wisdom and skilled expertise as they work their magic for the next few weeks.
Celebrating Ava's bravery with Ghiradelli ice cream!
Monday, May 23, 2016
This Is Where We Are
It's so hard to write. I've tried for many nights to get motivated to update on Ava but each night I'm so exhausted that I'd much rather curl up next to Ava and sleep.
But tonight I felt a nudge from the Holy Spirit to wake up and write. I was inspired at 3:00 a.m. after taking Ava to the bathroom. Here I am now, though, just looking at this cursor blinking away and all this white space left to fill and it reminds me how impossible it will be to live the rest of my life without her. Pages and pages of my life are filled with Ava's presence. Her life intersected mine after 28 years of living without her and, yet, it seems our story would abruptly end if she no longer held a part.
We are in the worst of a vicious sandstorm. I want to open my eyes and see what is happening so that I can cherish this time with her. Because even though it is stormy, she is by our side and I don't want to miss a thing. But I can't. The sand, it burns. It stings our eyes. There is no escaping the tiny rocks pelting us and reminding us that we are not safe; there will be damage. It's impossible to see from the tears. Still, I want so much to stand in this storm and know joy for the sole reason that it may be our last time together.
Everything is done with this reality. This may be our last summer together as a family of five. This may be the last bike ride, the last time running through the grass, the last time swinging on these swings, the last time playing doctor and building legos and reading books, and... Every night, I breathe her baby scent in deeply and try to memorize every detail about this little girl.
I pray that she gets to celebrate her birthday in August. I plead with her in my heart. Don't go in the summer, baby. It will be too painful to face any more summers of laughing, splashing, icecream eating children without you here to enjoy the same. Don't go in the fall, baby. It will be hard to see all the children starting school, another year older and taller, while you are forever seven. Don't go in the winter, baby. It will be wrong to celebrate Christmas without you next to Gwen and Jude delighting in the wonder of the season together. Don't go in the spring, baby. It will be too much to see the flowers bloom and things come to life knowing you are gone.
Don't go, baby. Please.
We celebrated her birthday this past Saturday. Since we didn't know what her situation would be like in August, we decided to have her party early. She wanted a tea party and I was so thankful for this opportunity to plan for something, to look ahead for once. It was life-giving to see her enjoying her friends and playing with abandon. Thank you to everyone who came to wish her a happy birthday and to celebrate the life of our precious girl.
Ava is having more pain at night and throughout the day. This is a new development but we are keeping her comfortable with pain meds. There are more tumors inside and outside of her body. We are fighting with everything we have, but the doctors say there is not much left to do. We can try Mylotarg but it will be intense. It will leave her in the hospital for a month. If we only have but a few months, how can we ask her to spend it tethered to a pole? And yet, if we do nothing, she may decline even sooner. We are stuck between these choices that cannot be fair. How do we choose?
Yet somehow Mike and I have been making decisions, leaning on each other when it's too hard to stand. We process things so differently but our hearts beat together for this child. With Ava's help, we have decided to stay in Chicago for 3 more weeks, and begin radiation in hopes that the leukemia on her skin will respond to that. She will also start high dose steroids to try to suppress the disease while pursuing radiation. Ava has asked for more time before going to Seattle to start Mylotarg. But eventually it is in our plans to try this last ditch drug to see if we can eradicate the tumors on the inside so that she can go to transplant.
There is no right answer. There never has been with her disease. The doctors can't say much about how to treat her but they know, for the most part, she has responded best to ALL therapies. Now that we are out of options with those, we are moving to AML directed therapies with the knowledge that she does not respond as well to them. Mylotarg is an AML therapy and that is why there has been hesitation and doubt regarding its efficacy. But we are straight out of options. We have been told that we can go move to hospice and try palliative measures or we can give Mylotarg a chance. The hope is to get to second transplant because it can be curative. The transplant team will not take her unless every single tumor is gone. Donor cells don't stand a chance against extramedullary disease and the team wouldn't put her through a second transplant unless they felt she had a fighting chance. If all fails, we can try phase 1 trials or we can bring her home to rest easy.
So this is where we are.
You, Mike, and I, we have given her much. She has known joy, laughter, and good things. I constantly ask if she is a happy kid. She always tells me that she is. Yet, she is scared. She's not afraid of where she is going but the idea of being separated from us is far too much for her seven year old heart to handle. Every new bump, every new pain, has her looking up to me with concern. "Will I be okay?" she asks me.
I can't ask for much, knowing that we have maxed out on all of our favors. You have been by our side through the worst time of our lives. You have poured your love out as an unending and beautiful sacrifice before the Lord. You have been our lifeline, keeping us above the waves that won't stop crashing down. But if you would allow me one last request, we humbly ask that you have hope for Ava. Help us give her hope by donating to organizations that directly fund research for childhood cancers. One of the most painful things is knowing we are on the cusp of finding a cure but it might be too late for Ava. Donate your blood and platelets to keep children like Ava going when chemo depletes them of these things. Pray that God would infuse hope into this desperate situation. Hope with us that this dark night would end, and the sun would rise with healing in its wings.
I don't believe that God is holding out on us until we have a more contrite heart or until one more person prays. No, I believe God has the best in store for us. I believe that His plans are good even when it doesn't look that way at first. I believe that He has the final word in all situations, especially life and death. So we look to Him, keeping our focus on His word and His promises, anticipating His goodness to flow down into the deep cracks of our devastated hearts.
In the meantime, I reserve my sobbing for the car, the shower, the aisles of Target, for any moment when she is not with me. This is my gift to her. She will not know the grief that we suffer because she has already suffered enough. If she knew how hard this was on us, even if the time came for her to go, she would hold on with every straggling breath. So we will show her that we are brave, that we can go on, that we will be okay, even if it won't be the truth for a long, long while.
She looks up to me with her beautiful, brown eyes, tears streaming down, and asks for help. "Mama, please, help me," she says when her pain is out of control. And my insides shrivel up and die because I am unable to fix this problem. I have no control and it makes me crazy. It undoes the unspoken pledge we have made as moms, the promise to protect our children from harm. I want so much to make things okay, to promise her that she will be fine. But I am painfully helpless to help.
Father, please, help us. Only you can make a way, where there is no way.
But tonight I felt a nudge from the Holy Spirit to wake up and write. I was inspired at 3:00 a.m. after taking Ava to the bathroom. Here I am now, though, just looking at this cursor blinking away and all this white space left to fill and it reminds me how impossible it will be to live the rest of my life without her. Pages and pages of my life are filled with Ava's presence. Her life intersected mine after 28 years of living without her and, yet, it seems our story would abruptly end if she no longer held a part.
We are in the worst of a vicious sandstorm. I want to open my eyes and see what is happening so that I can cherish this time with her. Because even though it is stormy, she is by our side and I don't want to miss a thing. But I can't. The sand, it burns. It stings our eyes. There is no escaping the tiny rocks pelting us and reminding us that we are not safe; there will be damage. It's impossible to see from the tears. Still, I want so much to stand in this storm and know joy for the sole reason that it may be our last time together.
Everything is done with this reality. This may be our last summer together as a family of five. This may be the last bike ride, the last time running through the grass, the last time swinging on these swings, the last time playing doctor and building legos and reading books, and... Every night, I breathe her baby scent in deeply and try to memorize every detail about this little girl.
I pray that she gets to celebrate her birthday in August. I plead with her in my heart. Don't go in the summer, baby. It will be too painful to face any more summers of laughing, splashing, icecream eating children without you here to enjoy the same. Don't go in the fall, baby. It will be hard to see all the children starting school, another year older and taller, while you are forever seven. Don't go in the winter, baby. It will be wrong to celebrate Christmas without you next to Gwen and Jude delighting in the wonder of the season together. Don't go in the spring, baby. It will be too much to see the flowers bloom and things come to life knowing you are gone.
Don't go, baby. Please.
We celebrated her birthday this past Saturday. Since we didn't know what her situation would be like in August, we decided to have her party early. She wanted a tea party and I was so thankful for this opportunity to plan for something, to look ahead for once. It was life-giving to see her enjoying her friends and playing with abandon. Thank you to everyone who came to wish her a happy birthday and to celebrate the life of our precious girl.
Ava is having more pain at night and throughout the day. This is a new development but we are keeping her comfortable with pain meds. There are more tumors inside and outside of her body. We are fighting with everything we have, but the doctors say there is not much left to do. We can try Mylotarg but it will be intense. It will leave her in the hospital for a month. If we only have but a few months, how can we ask her to spend it tethered to a pole? And yet, if we do nothing, she may decline even sooner. We are stuck between these choices that cannot be fair. How do we choose?
Yet somehow Mike and I have been making decisions, leaning on each other when it's too hard to stand. We process things so differently but our hearts beat together for this child. With Ava's help, we have decided to stay in Chicago for 3 more weeks, and begin radiation in hopes that the leukemia on her skin will respond to that. She will also start high dose steroids to try to suppress the disease while pursuing radiation. Ava has asked for more time before going to Seattle to start Mylotarg. But eventually it is in our plans to try this last ditch drug to see if we can eradicate the tumors on the inside so that she can go to transplant.
There is no right answer. There never has been with her disease. The doctors can't say much about how to treat her but they know, for the most part, she has responded best to ALL therapies. Now that we are out of options with those, we are moving to AML directed therapies with the knowledge that she does not respond as well to them. Mylotarg is an AML therapy and that is why there has been hesitation and doubt regarding its efficacy. But we are straight out of options. We have been told that we can go move to hospice and try palliative measures or we can give Mylotarg a chance. The hope is to get to second transplant because it can be curative. The transplant team will not take her unless every single tumor is gone. Donor cells don't stand a chance against extramedullary disease and the team wouldn't put her through a second transplant unless they felt she had a fighting chance. If all fails, we can try phase 1 trials or we can bring her home to rest easy.
So this is where we are.
You, Mike, and I, we have given her much. She has known joy, laughter, and good things. I constantly ask if she is a happy kid. She always tells me that she is. Yet, she is scared. She's not afraid of where she is going but the idea of being separated from us is far too much for her seven year old heart to handle. Every new bump, every new pain, has her looking up to me with concern. "Will I be okay?" she asks me.
I can't ask for much, knowing that we have maxed out on all of our favors. You have been by our side through the worst time of our lives. You have poured your love out as an unending and beautiful sacrifice before the Lord. You have been our lifeline, keeping us above the waves that won't stop crashing down. But if you would allow me one last request, we humbly ask that you have hope for Ava. Help us give her hope by donating to organizations that directly fund research for childhood cancers. One of the most painful things is knowing we are on the cusp of finding a cure but it might be too late for Ava. Donate your blood and platelets to keep children like Ava going when chemo depletes them of these things. Pray that God would infuse hope into this desperate situation. Hope with us that this dark night would end, and the sun would rise with healing in its wings.
I don't believe that God is holding out on us until we have a more contrite heart or until one more person prays. No, I believe God has the best in store for us. I believe that His plans are good even when it doesn't look that way at first. I believe that He has the final word in all situations, especially life and death. So we look to Him, keeping our focus on His word and His promises, anticipating His goodness to flow down into the deep cracks of our devastated hearts.
In the meantime, I reserve my sobbing for the car, the shower, the aisles of Target, for any moment when she is not with me. This is my gift to her. She will not know the grief that we suffer because she has already suffered enough. If she knew how hard this was on us, even if the time came for her to go, she would hold on with every straggling breath. So we will show her that we are brave, that we can go on, that we will be okay, even if it won't be the truth for a long, long while.
She looks up to me with her beautiful, brown eyes, tears streaming down, and asks for help. "Mama, please, help me," she says when her pain is out of control. And my insides shrivel up and die because I am unable to fix this problem. I have no control and it makes me crazy. It undoes the unspoken pledge we have made as moms, the promise to protect our children from harm. I want so much to make things okay, to promise her that she will be fine. But I am painfully helpless to help.
Father, please, help us. Only you can make a way, where there is no way.
Feeding the baby with the classic "open your mouth" expression. And there's a sharps container in the background...on the floor. #suchisourlife
Family Dinner! Thank you to Mike and Gwen for really making it a great picture! ;)
Ava thought these were hilarious!
Accompanying Ava on her first school field trip
Passed out on the bus afterwards
One afternoon, Ava had the idea to sell lemonade. "Let's sell lemonade and donate the money to find better treatments for kids with cancer, less painful ways!" she said.
Our very first customers, who also happened to be our awesome neighbors!
Through the help of our community, we raised $186.88! All the proceeds went directly to Allistaire's Obliteride Team, Team Baldy Tops to obliterate blood cancers, in memory of Allistaire.
Ava standing with the very best school principal, assistant principal, and librarian a kid could ever ask for!
With Dr. Moreland and Mrs. Schenk
With Ava's first grade teacher, Mrs. Daley
This guy is already 15 months old!!
Ava's tea party setup
The only thing on this table Ava cared about was the fondue fountain
Showing off their Tea party attire
With the lovely ladies
Happy early birthday, my love!
Celebrating Ah-ma's birthday!
Gettin' some love from halmuhnee and halahbujee
Happy Birthday, Ahma! You bring so much joy to Ava!
Saturday, May 14, 2016
There are nights I can't sleep for fear that every minute that passes is one minute closer to her final one. Oh God, hold our hearts in your hands. Words fail. Emotions fail. Sometimes it feels like my faith fails.
During my weakest moments, as I cry out into the seemingly dark space, it takes absolutely everything in me to clutch God's promises near. My fingers are grasping to hold on to truth, desperately trying not to fall into the blackest tunnel of grief.
There are more lesions growing and they should not be there if the chemo is working. The doctor says we can give it a few more days but we should prepare to head to Seattle if we don't see those bumps disappearing soon. This trip to Seattle will mark our last attempt at putting her in remission.
I see her sitting on that hospital bed and I wonder how much she really knows. The professionals, they say she knows a lot more than she lets on. They say it might be time to tell her that she may come to die. They say it doesn't have to be today but there could be beauty in processing it together.
Oh My God. My heart has never known such agony. Can she feel my internal distress? Is that why she stays close by, stroking my arm, kissing my cheeks? Does she know that something is not right in our strained whispers when we think she's gone to sleep? Are her ears sensitive to the conversations we have with her doctors behind closed and locked doors?
I don't know how the world is still moving, day to night, back to day again. We are stuck in between living and dying. Do I urge her to go to school? Do I buy her summer clothes? Do we plan for one last trip? Do we take lots of videos just in case? How do you enjoy the time you have knowing it is not enough? How do you anticipate watching your child, the one you witnessed drawing her very first breath, breathe her very last?
I have lots of questions and a whole lot of blank space where the answers should be. This place we are in, it is lonely and heavy. I think of Gwen losing her very best friend and my heart flatlines. To have to explain that she will not know again the happiness she's had with her sister, that she can not play with her, that no amount of waiting or begging will bring her back, this is a second death to mourn.
But she is not yet gone. She is here. She is currently sleeping and breathing glorious breaths. And I feel guilty that I am sad when we still have minutes, days, weeks, and hopefully months. "But WE WANT MORE," I want to scream to the One who can save her.
And yet I am humbled as I continue to hear a gentle and quiet voice urging me to wait. Watch and wait. Wait and see. The only one that is able to make beauty from ashes is asking me to lean in and hear the faint rumble of what is to come from all of this. There will be good that comes. There must be good that comes. So we place every last egg in the basket of hope because we are called to hope, faith, and love. We will hope. We will stand in faith. We will love, to the very last drop, with all that we have.
We honor You, God, when all we want to do is vomit from the pain. We honor You, even when our voices have gone hoarse from the grief. We honor You, from the bottom of this pit. And when nothing makes sense anymore, help us honor you still.
During my weakest moments, as I cry out into the seemingly dark space, it takes absolutely everything in me to clutch God's promises near. My fingers are grasping to hold on to truth, desperately trying not to fall into the blackest tunnel of grief.
There are more lesions growing and they should not be there if the chemo is working. The doctor says we can give it a few more days but we should prepare to head to Seattle if we don't see those bumps disappearing soon. This trip to Seattle will mark our last attempt at putting her in remission.
I see her sitting on that hospital bed and I wonder how much she really knows. The professionals, they say she knows a lot more than she lets on. They say it might be time to tell her that she may come to die. They say it doesn't have to be today but there could be beauty in processing it together.
Oh My God. My heart has never known such agony. Can she feel my internal distress? Is that why she stays close by, stroking my arm, kissing my cheeks? Does she know that something is not right in our strained whispers when we think she's gone to sleep? Are her ears sensitive to the conversations we have with her doctors behind closed and locked doors?
I don't know how the world is still moving, day to night, back to day again. We are stuck in between living and dying. Do I urge her to go to school? Do I buy her summer clothes? Do we plan for one last trip? Do we take lots of videos just in case? How do you enjoy the time you have knowing it is not enough? How do you anticipate watching your child, the one you witnessed drawing her very first breath, breathe her very last?
I have lots of questions and a whole lot of blank space where the answers should be. This place we are in, it is lonely and heavy. I think of Gwen losing her very best friend and my heart flatlines. To have to explain that she will not know again the happiness she's had with her sister, that she can not play with her, that no amount of waiting or begging will bring her back, this is a second death to mourn.
But she is not yet gone. She is here. She is currently sleeping and breathing glorious breaths. And I feel guilty that I am sad when we still have minutes, days, weeks, and hopefully months. "But WE WANT MORE," I want to scream to the One who can save her.
And yet I am humbled as I continue to hear a gentle and quiet voice urging me to wait. Watch and wait. Wait and see. The only one that is able to make beauty from ashes is asking me to lean in and hear the faint rumble of what is to come from all of this. There will be good that comes. There must be good that comes. So we place every last egg in the basket of hope because we are called to hope, faith, and love. We will hope. We will stand in faith. We will love, to the very last drop, with all that we have.
We honor You, God, when all we want to do is vomit from the pain. We honor You, even when our voices have gone hoarse from the grief. We honor You, from the bottom of this pit. And when nothing makes sense anymore, help us honor you still.
"Trust In You"
Lauren Daigle
Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I’ve tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You’re by my side
When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You
Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less
When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You
You are my strength and comfort
You are my steady hand
You are my firm foundation; the rock on which I stand
Your ways are always higher
Your plans are always good
There’s not a place where I’ll go, You’ve not already stood
When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You
Monday, May 9, 2016
Nelarabine in Chicago
Mike & Esther decided that Ava will receive nelarabine treatment in Chicago. She will have her first dose today (still waiting in the hospital room for it as of now), and she will have it on an outpatient basis for the next 5 days. I don't have much more information beyond that right now, but thanks for your prayers!
Sunday, May 8, 2016
Meal Train
A meal schedule has been set up for the Lees. Please click here to sign up. The link is also posted under the "Ways to Help" and "Meal Schedule" tab. Thanks in advance for your support!
When Mother's Day Makes You Cry
It's officially Mother's Day and I just got done crying a million tears curled up in Ava's bed under the comfort of her Zippy Sack.
The Camp Out From Cancer tent is pitched on Gwen's bed and Ava's dress from her transplant party is hanging off the end of the bunk bed. There is so much in this room that reminds me of this season, of the kindness of others, of the fact that people want to bless us while we walk the dastardly way that cancer leads us.
This Zippy Sack, though, was a gift from us to her. She had seen it advertised once during the countless hours of media entertainment that kept her company during all her neutropenic months. "Please can I have a Zippy Sack?" she asked me again and again. I always answered with a "We'll see." Because, come on, how many blankets does the girl need? Also, their beds are unoccupied every single night because they like our bed better. But, I have to admit, this is a good one. It's soft, stays on the bed, and it's too easy to make the bed with that nifty zipper on the side.
We bought it for her a few days back when she was complaining of pain from her chloromas. "Let's go to Toys R' Us!" I said. It wasn't because we didn't have enough toys. Also, not because I longed to turn my children into entitled brats. But sometimes when your child's cancer begins to grow into tumors that cause suffering, which require high dose pain meds, all the long term goals get tossed out. Short term objectives are all that matter.
Medicate her. Pray for her. Distract her. Repeat.
I cried tonight into her Zippy Sack because I didn't want this to be my last Mother's Day as a mom to three children. I didn't want this Zippy Sack to be the blanket that covers my girl during her hospice days. I didn't want my grieving friends to have to feel this day in all its blistering, burning ways.
This pain is so unbelievable. The involuntary quivering of the muscles, the physical force exerted on the body from perpetual stress, the cottony head from crying so long and hard, the sore joints from sleeping fitfully, the actual sensation of injury to your heart, the gasping for breath. It. all. hurts. so. bad.
And we haven't even passed through the darkest valley yet. Oh God, be merciful.
We thought we were so smart to celebrate Mother's Day on Saturday when the restaurants were less crowded. We told ourselves this while driving from one restaurant to the next with all the same wait time of an hour. When I walked into Beppo Di Buca, I thought we hit the jackpot. There seemed to be absolutely no wait. But as I approached the hostess, she gave me a grumpy look and told me that they were booked up for at least an hour. I put my name down and walked outside to call in the rest of the family. The hostess, bless her heart (southern friends-you feel what I'm saying), must have been stressed that night because when I walked back in, she asked if I had wanted to put my name on the waiting list. I was confused. I was sure she wrote my name down. I asked her about it and she rudely replied that "nope" she hadn't because she assumed I wasn't interested.
I wanted to shove back and tell her that this could be my last Mother's Day with my daughter and all we wanted to do was sit down and eat some bread because Ava wanted bread. I wanted to tell her that my girl, my sweet bald girl, may die. But, no. No. I didn't think she needed to be privy to the most private parts of our hearts that only those who love Ava should have the privilege of knowing.
It is this way, these intense emotions of hope and despair. We push back against statistics, against what doctors say, against research, and numbers. But they are still there, woefully staring back at us, reminding us that this world is broken, that we are finite, that babies can die too.
We ended up at a sushi restaurant and Ava got to eat rice instead of bread. This is an important detail from the night because we had made the difficult decision of putting Ava on a high-protein, no sugar diet. Ever obedient, she abstained from carbs and sugar for the past week. It was difficult and emotional. But tonight, tonight, she ate white rice and she was happy. We had danced around the idea of getting ice cream after dinner but she decided she had enough sugar for the day and didn't want her cancer to grow. She was so mature about it. Not me. I cried the whole way home because of how unfair it was that my kid couldn't just eat a stupid, nutrition-less ice cream cone because of this vicious disease, so intent on taking her life.
As I wept into Ava's bed, one of my dearest friends from Seattle called and just listened. She wished she were by my side but I didn't want anyone to see me in that moment: tears mixed with snot mixed with wails and shudders. Ugh, it was so ugly.
Death is so ugly.
Thank you, God, for saving us from this end. Your salvation plan defied all earthly understanding. Why you would choose to suffer a loss of that magnitude to make a way for us, we can never fully appreciate. So great was the agony, you had to turn away when your son hung on the cross, even for those who rejected you still. Thank you, Jesus, for redeeming death. Thank you for looking at it straight in the face and punching it down so that it can not win. Although we may suffer for a while, death will not prevail.
Only love can. Only love has. Only love will.
"That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever."
The Camp Out From Cancer tent is pitched on Gwen's bed and Ava's dress from her transplant party is hanging off the end of the bunk bed. There is so much in this room that reminds me of this season, of the kindness of others, of the fact that people want to bless us while we walk the dastardly way that cancer leads us.
This Zippy Sack, though, was a gift from us to her. She had seen it advertised once during the countless hours of media entertainment that kept her company during all her neutropenic months. "Please can I have a Zippy Sack?" she asked me again and again. I always answered with a "We'll see." Because, come on, how many blankets does the girl need? Also, their beds are unoccupied every single night because they like our bed better. But, I have to admit, this is a good one. It's soft, stays on the bed, and it's too easy to make the bed with that nifty zipper on the side.
We bought it for her a few days back when she was complaining of pain from her chloromas. "Let's go to Toys R' Us!" I said. It wasn't because we didn't have enough toys. Also, not because I longed to turn my children into entitled brats. But sometimes when your child's cancer begins to grow into tumors that cause suffering, which require high dose pain meds, all the long term goals get tossed out. Short term objectives are all that matter.
Medicate her. Pray for her. Distract her. Repeat.
I cried tonight into her Zippy Sack because I didn't want this to be my last Mother's Day as a mom to three children. I didn't want this Zippy Sack to be the blanket that covers my girl during her hospice days. I didn't want my grieving friends to have to feel this day in all its blistering, burning ways.
This pain is so unbelievable. The involuntary quivering of the muscles, the physical force exerted on the body from perpetual stress, the cottony head from crying so long and hard, the sore joints from sleeping fitfully, the actual sensation of injury to your heart, the gasping for breath. It. all. hurts. so. bad.
And we haven't even passed through the darkest valley yet. Oh God, be merciful.
We thought we were so smart to celebrate Mother's Day on Saturday when the restaurants were less crowded. We told ourselves this while driving from one restaurant to the next with all the same wait time of an hour. When I walked into Beppo Di Buca, I thought we hit the jackpot. There seemed to be absolutely no wait. But as I approached the hostess, she gave me a grumpy look and told me that they were booked up for at least an hour. I put my name down and walked outside to call in the rest of the family. The hostess, bless her heart (southern friends-you feel what I'm saying), must have been stressed that night because when I walked back in, she asked if I had wanted to put my name on the waiting list. I was confused. I was sure she wrote my name down. I asked her about it and she rudely replied that "nope" she hadn't because she assumed I wasn't interested.
I wanted to shove back and tell her that this could be my last Mother's Day with my daughter and all we wanted to do was sit down and eat some bread because Ava wanted bread. I wanted to tell her that my girl, my sweet bald girl, may die. But, no. No. I didn't think she needed to be privy to the most private parts of our hearts that only those who love Ava should have the privilege of knowing.
It is this way, these intense emotions of hope and despair. We push back against statistics, against what doctors say, against research, and numbers. But they are still there, woefully staring back at us, reminding us that this world is broken, that we are finite, that babies can die too.
We ended up at a sushi restaurant and Ava got to eat rice instead of bread. This is an important detail from the night because we had made the difficult decision of putting Ava on a high-protein, no sugar diet. Ever obedient, she abstained from carbs and sugar for the past week. It was difficult and emotional. But tonight, tonight, she ate white rice and she was happy. We had danced around the idea of getting ice cream after dinner but she decided she had enough sugar for the day and didn't want her cancer to grow. She was so mature about it. Not me. I cried the whole way home because of how unfair it was that my kid couldn't just eat a stupid, nutrition-less ice cream cone because of this vicious disease, so intent on taking her life.
As I wept into Ava's bed, one of my dearest friends from Seattle called and just listened. She wished she were by my side but I didn't want anyone to see me in that moment: tears mixed with snot mixed with wails and shudders. Ugh, it was so ugly.
Death is so ugly.
Thank you, God, for saving us from this end. Your salvation plan defied all earthly understanding. Why you would choose to suffer a loss of that magnitude to make a way for us, we can never fully appreciate. So great was the agony, you had to turn away when your son hung on the cross, even for those who rejected you still. Thank you, Jesus, for redeeming death. Thank you for looking at it straight in the face and punching it down so that it can not win. Although we may suffer for a while, death will not prevail.
Only love can. Only love has. Only love will.
"That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever."
2 Corinthians 4:16-18
"Look here, Buddy, I own you. The faster you understand, the easier life will be for you." -Jude
Because Jude is too young and video games can't wait.
Camp Out From Cancer tent- a wonderful organization to help kids dealing with cancer
Dancing the day away
Gwen, I hope you don't complain about not being able to find your name on a keychain anymore because I found your name on a building. #waybetter
These girls find and hold each other through the dark.
Ava and Juju
Playing Gwen's "kee-tar" in secret so that she doesn't get yelled at. #sinners #allhavefallenshort
She really politely asked if we could spread weeds make wishes all across our beautiful green grass. #couldn'tsayno #justlookather #shewanted3wishes
Thursday, May 5, 2016
Treatment Options
Thank you so much for your perseverance in prayer for Ava and the Lee family. The waiting has seemed like ages.
Praise God, Ava got approval for the compassionate use of Mylotarg (!), which would take place in Seattle. Thank you so much for your intercession. Even so, she may not start Mylotarg at this time. After speaking with the oncologist today, there are two options to consider. Both follow the same 3 steps: chemo --> skin radiation --> transplant.
Option 1) Mylotarg + fludarabine + Ara-C (in Seattle)
This would be an aggressive chemo regimen, a last-ditch attempt to get the cancer into remission, followed up with skin radiation in preparation for transplant. It is "possible" for all those steps to occur in sequence, but highly unlikely. Still, it's an option.
What comes along with this aggressive treament is immunosuppression, so this would require inpatient treatment. Ava would need to be hospitalized until her blood counts recover, which would mean about a month in the hospital, since it's about 30-40 days between doses. This would be very hard on Ava not only physically, but also emotionally and mentally to be hospitalized for a month while likely feeling really poorly. She would also need to fly out to Seattle as soon as possible to receive this treatment. If this treatment doesn't work, there's not much more that can be done. They can look into clinical trials to see if Ava qualifies for any, but it wouldn't be hopeful.
Option 2) Nelarabine (in Chicago)
Nelarabine is another chemo agent for consideration. Ava had it once before; it helped bring her MRD level down some more right before transplant. The good thing is that Ava would be able to get treated on an outpatient basis here in Chicago, and it would allow her a better quality of life. If the nelarabine works, then she would receive skin radiation in Chicago before flying to Seattle for transplant. If it doesn't or Ava only has a partial response, then she can still get the Mylotarg treatment.
Ava's cancer has demonstrated itself to be very aggressive, and the doctors said we are at the end of the line with treatment options. The likelihood of these options working is low and it will be difficult to get Ava to transplant. Still, they haven't quite said that it's time to throw in the towel, and they are willing to give it a try.
The Lees will likely opt for nelarabine treatment in Chicago. There don't seem to be many downsides to this, as it would not jeopardize Ava's opportunity to still receive Mylotarg later if necessary, and would afford her a better quality of life. Ava could start treatment as early as Saturday possibly, and would receive outpatient treatment for 5 days at a time.
Mike & Esther are so grateful for your continual prayers for Ava and their family, lifting up every area of the journey. Thank you so much for walking with them.
Praise God, Ava got approval for the compassionate use of Mylotarg (!), which would take place in Seattle. Thank you so much for your intercession. Even so, she may not start Mylotarg at this time. After speaking with the oncologist today, there are two options to consider. Both follow the same 3 steps: chemo --> skin radiation --> transplant.
Option 1) Mylotarg + fludarabine + Ara-C (in Seattle)
This would be an aggressive chemo regimen, a last-ditch attempt to get the cancer into remission, followed up with skin radiation in preparation for transplant. It is "possible" for all those steps to occur in sequence, but highly unlikely. Still, it's an option.
What comes along with this aggressive treament is immunosuppression, so this would require inpatient treatment. Ava would need to be hospitalized until her blood counts recover, which would mean about a month in the hospital, since it's about 30-40 days between doses. This would be very hard on Ava not only physically, but also emotionally and mentally to be hospitalized for a month while likely feeling really poorly. She would also need to fly out to Seattle as soon as possible to receive this treatment. If this treatment doesn't work, there's not much more that can be done. They can look into clinical trials to see if Ava qualifies for any, but it wouldn't be hopeful.
Option 2) Nelarabine (in Chicago)
Nelarabine is another chemo agent for consideration. Ava had it once before; it helped bring her MRD level down some more right before transplant. The good thing is that Ava would be able to get treated on an outpatient basis here in Chicago, and it would allow her a better quality of life. If the nelarabine works, then she would receive skin radiation in Chicago before flying to Seattle for transplant. If it doesn't or Ava only has a partial response, then she can still get the Mylotarg treatment.
Ava's cancer has demonstrated itself to be very aggressive, and the doctors said we are at the end of the line with treatment options. The likelihood of these options working is low and it will be difficult to get Ava to transplant. Still, they haven't quite said that it's time to throw in the towel, and they are willing to give it a try.
The Lees will likely opt for nelarabine treatment in Chicago. There don't seem to be many downsides to this, as it would not jeopardize Ava's opportunity to still receive Mylotarg later if necessary, and would afford her a better quality of life. Ava could start treatment as early as Saturday possibly, and would receive outpatient treatment for 5 days at a time.
Mike & Esther are so grateful for your continual prayers for Ava and their family, lifting up every area of the journey. Thank you so much for walking with them.
Monday, May 2, 2016
Urgent prayer request
Currently, radiation and second transplant are no longer on the table. The primary focus will be to get her into a better place with her disease. The sad truth is, second transplants do not seem to help against extramedullary disease (chloromas).
Our doctor is in the process of appealing for the compassionate use of Mylotarg which is a more targeted chemotherapy. It is being used for AML and since Ava has a mixed diagnosis of AML and ALL it may be difficult to get approved. We will hopefully know by tomorrow. Please pray that the drug would be approved for Ava.
Research shows that Ava's diagnosis holds very poor prognosis especially now with the recent happenings. But we continue to petition before the Great Physician for her little body to overcome the seemingly insurmountable obstacles set before her. But, even more, we ask for prayer for our hearts, that we would lay them down and surrender it all to the one who holds all our tomorrows.
Still it is hard. And with tears upon tears we hope and pray for a future with our Ava Bright Lee.
At the Royal Ball throwing back water like a boss
\
Ava and Juju
Taking more naps throughout the day due to more fitful nights from chloroma pain
Worshipping with daddy
Auntie Sof and Uncle Mark = hours of fun
More resting
Sunday, May 1, 2016
Preliminary Results
Yesterday, we found out that preliminary results of Ava's PET scan on Wednesday seem to indicate the presence of small, new chloromas. There's a possibility of a new lesion on Ava's head as well. Ava also had a bone marrow biopsy taken yesterday, so we are waiting for those results.
Just to recap/clarify: as you know, leukemia affects the bone marrow and blood-forming tissues. Chloromas are masses of leukemic cells that form outside the bone marrow. They are more difficult to treat because they aren't easily targeted/reached by the chemotherapy and treatments that target the bone marrow. This is also true for leukemia cutis, which manifests in the skin, apart from blood circulation.
While Ava's first transplant appeared to go well, leukemia cutis started manifesting on her skin all over her body, even before any such indication appeared in her marrow. Chloromas were discovered within her body as well, revealing the cancer's activity outside her bone marrow. The bone marrow biopsies eventually revealed an increase in disease level.
This last round of chemo in Seattle was an attempt to get the disease into remission (even the leukemia cutis, though it is more challenging to treat), so that Ava would be in position for a second transplant. With a second transplant, the hope is that there might be slightly more graft-vs-host effect, resulting in the new bone marrow to more effectively kill off any lingering leukemic cells. Of course this is a fine line, since too much graft-vs-host activity is undesirable and dangerous.
While it was encouraging that Ava's leukemia cutis lesions decreased quite remarkably after chemo in Seattle, it was evident that cancer still remained, which isn't optimal going into transplant. Moreover, there was strong recommendation that Ava get radiation treatment prior to transplant (to target the skin lesions), to help improve her prognosis after a second transplant. The downside to radiation treatment is that the treatment period allows a window of time where Ava isn't receiving chemotherapy, allowing more time for the cancer to grow. There was some discussion of Ava getting chemo and radiation concurrently, but that isn't common practice (and no one was really sure if this was feasible/optimal), and this isn't what ended up happening in the end. Ava finished a round of chemo here in Chicago, and is supposed to get radiation, but for some reason she still hasn't started radiation. The recent PET scan and bone marrow biopsy are to assess the current state of her leukemia, but we are still waiting for results and a more definitive understanding of what her PET scan actually shows. Meanwhile, no chemo means that the cancer has opportunity to grow.
Ava has been complaining of much more pain lately, in her shoulder and in her chest. We are unclear as to what the next steps are, and it seems that we won't hear much before Monday.
Thank you for your faithful prayers. Please pray:
Your prayers are coveted and appreciated. Please feel free to pray in any and all other ways you feel led. Thank you for standing with the Lee family.
Just to recap/clarify: as you know, leukemia affects the bone marrow and blood-forming tissues. Chloromas are masses of leukemic cells that form outside the bone marrow. They are more difficult to treat because they aren't easily targeted/reached by the chemotherapy and treatments that target the bone marrow. This is also true for leukemia cutis, which manifests in the skin, apart from blood circulation.
While Ava's first transplant appeared to go well, leukemia cutis started manifesting on her skin all over her body, even before any such indication appeared in her marrow. Chloromas were discovered within her body as well, revealing the cancer's activity outside her bone marrow. The bone marrow biopsies eventually revealed an increase in disease level.
This last round of chemo in Seattle was an attempt to get the disease into remission (even the leukemia cutis, though it is more challenging to treat), so that Ava would be in position for a second transplant. With a second transplant, the hope is that there might be slightly more graft-vs-host effect, resulting in the new bone marrow to more effectively kill off any lingering leukemic cells. Of course this is a fine line, since too much graft-vs-host activity is undesirable and dangerous.
While it was encouraging that Ava's leukemia cutis lesions decreased quite remarkably after chemo in Seattle, it was evident that cancer still remained, which isn't optimal going into transplant. Moreover, there was strong recommendation that Ava get radiation treatment prior to transplant (to target the skin lesions), to help improve her prognosis after a second transplant. The downside to radiation treatment is that the treatment period allows a window of time where Ava isn't receiving chemotherapy, allowing more time for the cancer to grow. There was some discussion of Ava getting chemo and radiation concurrently, but that isn't common practice (and no one was really sure if this was feasible/optimal), and this isn't what ended up happening in the end. Ava finished a round of chemo here in Chicago, and is supposed to get radiation, but for some reason she still hasn't started radiation. The recent PET scan and bone marrow biopsy are to assess the current state of her leukemia, but we are still waiting for results and a more definitive understanding of what her PET scan actually shows. Meanwhile, no chemo means that the cancer has opportunity to grow.
Ava has been complaining of much more pain lately, in her shoulder and in her chest. We are unclear as to what the next steps are, and it seems that we won't hear much before Monday.
Thank you for your faithful prayers. Please pray:
- for wisdom regarding Ava's treatment
- for peace for the Lee family through each step & decision
- for good communication among the healthcare providers involved as well as with the family
- for peace for Ava, as she's had more fear lately, especially with what she's been experiencing physically.
- for God's presence to be known and felt, and for His name to be glorified
Your prayers are coveted and appreciated. Please feel free to pray in any and all other ways you feel led. Thank you for standing with the Lee family.
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