Wednesday, December 30, 2015

Thank you so much for faithfully checking in on us. We are taking the advice of Ava's doctor and "enjoying her good health" for the time being. Our Christmas was incredible. Ava's uncles and their families were there. Both sets of grandparents were there. And, last minute, I called together my cousins and they dropped everything to be there too. So we were surrounded by sweet, intoxicating love.

During this time we also prayerfully came to the difficult decision to "watch and wait." It was the advice given to us by doctors from St. Jude's and Johns Hopkins. Our other, really bright and amazing, doctors who wanted us to get started on treatment also honored our desire to wait. In light of all the unknowns and toxicities with treatment, they felt it was a reasonable choice. 

So, we are waiting.

We're not just waiting. We are living too. But, I have never appreciated each moment like I do now. I sigh with relief every morning we wake up next to each other and I breathe out gratitude every night that we go to bed, the heavy weight of a sleeping child in each of our arms. I cherish each beautifully mundane moment we have. It sounds cliche and impossible, but it's the truth. We only have this hour, this minute, this second, so we try to hold it close and to live it well.

It will never be enough though. I want a lifetime with her. So I'm on my face every night asking the Lord to be kind to me, to give me the desires of my heart. My desire is to see this girl blossom and thrive. I am curious how her hair will look when it has grown past her shoulders. The radiation that nearly killed her, left her with beautiful curly locks that she often twirls with her little fingers when she is deep in thought. I dream about what she will be like in her teens and then in her adult years. I imagine we would be friends and that Gwen, Ava, and I would meet regularly for coffee and to shoot the breeze because I'm such a cool and relevant mom...is what I tell myself. I want to see her radiant face walking down the aisle to meet the man that is so freaking lucky to marry her and I long to experience the matchless joy she will know if God gives her the miracle of bringing forth life...there is so much more that I want for her. It hurts to know that we are mere months away from other immunotherapies that may eliminate the need for harsh chemos and may fight stronger and harder against the malignant cells that are threatening the life of our girl. Help me spread the word, please. If you are looking for a place to make charitable contributions, research funds that go toward finding a cure specifically for childhood cancers is a most worthy cause...says the desperate mom whose child awaits a cure.

For now, we will have her blood drawn weekly to check for any sign that her cancer has penetrated into her bloodstream. We'll also do a bi-weekly biopsy in hopes that we can catch these horrid renegade cells before they proliferate inside my daughter's otherwise perfect little body. We are in the process of drawing up our plans for chemo, transplant, which hospitals, and which trial drugs to use so when the time comes we will be ready to hit this cancer so hard that it will crawl up and die forever. 

That last paragraph sounded bold and confident but the truth is, I am so unbelievably scared. I feel like we are barreling toward this inevitable wall of pain and I am bracing myself for the impact. But there will be no consolation, no solace, no comfort when we collide with our greatest fears. We can hold out our hands and push Ava behind us so that we might take the full force of this angry, raging disease but it may crush us, our very hearts, while tearing her away from us.

Our souls are tied together, Ava and mine. They are so intricately interwoven that I don't know where I have left off and she has begun. It is this way with all my kids. So I don't understand how my love alone can not protect her from this relapse. Why don't my cells recognize the danger and, through brute strength, disintegrate her cells even from the distance that separates her unhealthy cells from my thriving ones? Or why can I not take her place so that she can have my blood coursing through her body while I take on her soul sucking cancerous blood instead?

It's been a constant battle of trembling in terror and, yet, laying hold of hope. My friend reminded me that "The one who has wiped away our tears, has shed His own. And He has triumphed." 

Somehow, my love has not been enough to cure her. But, somehow, God loves her even more than I do and He understands this wretched pain. The Jesus who wept, is the one we draw near to now. And He will have the victory. So I scrape myself off the floor and get through this season of pain...somehow. 


Our Christmas 2015 with Ava's aunts, uncles, and cousins

He can smile for days

The presence of God calms the storm

Jude: Woman, I only weigh a few pounds less than you. Please rethink your strategy.

Friday, December 25, 2015

Your Love

The doorbell rang and I opened the door to a package on the front step. The card was signed by "Ava's faithful friends." When we opened the gift, we couldn't believe what we saw. It was a quilt with pieces from families near and far that have been praying for us and loving us through this valley. We read and read the messages. The theme was a bookcase filled with books that were stamped with words that showed the significance of how you allowed your stories to weave into ours. We are moved beyond words. Thank you for this most perfect and precious gift to remind us that we are surrounded and covered by love. It's a special Christmas and we cherish it all. If we have to fight, there's no one else we'd rather have in our corner than you.
‪#‎dingdongditchgift‬ ‪#‎tears‬ ‪#‎ifwehavetofight‬ ‪#‎inourcorner‬

Click the link below to watch the video!

Your Love





Thursday, December 24, 2015

We Need Wisdom

Thank you so much for waiting and for praying through this difficult time with us. 

We have some news. It's not what we had prayed for but it is, still, God's graciousness to us. We heard back from Seattle this morning that Ava's leukemia burden is still at .01%. We were praying for a miraculous healing and that the leukemic cells would retreat and be destroyed by her immune system but that is not the case. However, the fact that her leukemia hasn't grown in the past 2 weeks is a huge praise. The risk of it growing out of control while we came home for Christmas was a very real danger we faced. The doctors feel it is just a matter of time before she has a full blown relapse in her marrow and then her blood. This type of relapse would most likely disqualify her from a second transplant and make any salvage therapy ineffective. So the question is...why are we waiting?

The answer is not cut and dry. We have reached out to doctors from coast to coast and have had many experts in the field offer their opinions. There have been doctors who have urged us to go, go, go before the disease gets out of control. There are doctors who say that blasting her with toxic chemo for this tiny amount of disease would strip her of such a good quality of life. So there is the option to wait until the disease is more pronounced before making a definitive move. Both of these plans are heavy with risk. The first choice to forge ahead with chemo and a second transplant gives us hope, however small, for a cure but she could die a hundred different ways in the process. There is also the argument between which chemo to use. The doctors in Chicago would use ALL therapy, and the doctors in Seattle would use AML therapy. Due to the rarity of her leukemia, there is no set protocol. At diagnosis, she bounced between ALL and AML therapy with neither getting her fully into remission. It reminds us that we have always been in a position where we cannot rely solely on science and doctors. The second option to wait is fraught with the worry that we might miss the chance to treat her effectively and would have to face that regret for a lifetime.

Now that we have all the results we were waiting for, we can begin the process of planning our next steps. We go back and forth daily between our choices weighing the risks vs. the benefits. It's so different from anything we've had to make a decision about before and we pray that no one would ever have to choose between the choices we have in front of us. 

The reality is a decision has to be made soon. And by not choosing, we are still choosing. We long so much to confidently say we will wait it out and see the miracle God has in store for us where he wipes her marrow clean off this tragic disease. But, there is so much grace in how God has set a way for us to receive a second transplant. As one doctor put it, "you are in the best situation, for being in such a bad situation." And she's right. Typically when a child relapses, it is a raging, forceful relapse that announces itself in many ways especially with a marrow chock full of cancer. 

But Ava's has come on ever so slowly, giving us so much time to pray, to process, to love, to live. She is also one year post transplant which means her body is now healthy and thriving. Sadly, this is the best time to hit her again with treatment because her body would be able to withstand the toxicity so much better than children in a weakened state from just coming out of transplant. Not many children have the option of another transplant, so we are thankful that Ava meets the strict requirements to be given a second chance.

There is that small chance that her immune system can beat this and that is why we continue to stay on our knees until the bitter end. The doctors agree that this scenario is unlikely but we have walked with the Lord long enough to know that nothing is impossible when He wills it. To be honest, this is where I find that I have to wrestle hard with my faith. It is in the waking and the sleeping state that we struggle with God for a blessing, trying to get our hearts in line with what He will do despite what we want Him to do. It's a tremendous undertaking. God help us. Jesus pray for us.

Thank you for your prayers. The days are actually filled with the very real peace of God which allow us to enjoy the day with each other. We still laugh (a lot), discipline, learn, play, argue, work, etc. because of this supernatural peace. There are moments when our knees feel weak and we wonder how we will be able to face the days ahead but thankfully these are fleeting thoughts. If you would like to pray for us, please pray specifically that God would make it clear which path we should choose and that we would embark without looking back and without regret.



Thank you Jude...

Juby and Mama

Showing off the cross necklace that Great Aunt Sharon sent!

You would never know from this picture, but the girls fought long and hard over who would get which Palen Princess hairpin. Thank you Hannah!
We were presented with gifts from Cal's Angels "12 Days of Christmas" program...a program that helps take the burden off the planning and preparation of Christmas. There are no words. Thank you Stacey!

"Believe in Miracles" - an ornament sent to our family by Gwen's loving teacher

Jude redeeming the picture above

International Play Things (the makers of Calico Critters) sent a huge box of toys to Ava...seriously we have been blown away by the love and generosity we have been shown.


Ava working hard at school. This was my first time volunteering in her classroom and it moved me to pray harder that we might have many more of these moments.

Coatless in Chicago in December? See, miracles do happen!

Playing on the huge caterpillar that Jan and Janee brought over! It is the best babysitter ever!




Tuesday, December 22, 2015

Waiting

We felt your prayers today. Ava's procedure went smoothly. We spent the rest of the day swimming, playing, and eating dinner with the whole family.

It is tempting to despair. I have visited that place many times this month but there is also a rock of hope where our feet are planted firm and our eyes look expectantly toward the only one who can give us our hearts' desire. Thank you so much for continued prayers as we await our results by tomorrow or Wednesday. Please pray for specific wisdom in our next steps.



Monday, December 21, 2015

Ava goes in for her bone marrow biopsy tomorrow (Monday). To say we feel nervous and wrecked is an understatement. If it weren't for Jesus, we would already have buckled long ago.

Thank you to everyone who has joined us in prayer and fasting as we wait on the Lord and anticipate his goodness to us. We don't know what that will look like just yet but we pray that  we will remember his promises especially when we can't see the way in front of us.
#jesusonlyjesus


Friday, December 18, 2015

Got to volunteer in Ava's class today. It was hard to leave her behind after my hour was over. God, you see my ravaged heart. Please give us a lifetime with our girl, Ava.
#ourchristmas2015 #thankfulforthepresent 



Thursday, December 17, 2015

Prayer & Fasting Chain

We'd like to invite any interested people to join in a prayer & fasting chain for Ava. You might recall we had a prayer & fasting chain back in 2014 at the time of Ava's diagnosis. For now, the fasting chain will run through next Monday when Ava has her bone marrow biopsy. For those unable to add fasting to their prayers for whatever reason, please know that your prayers are still coveted and much appreciated!

Please see the signup page here for more information on how to participate. Feel free to contact me (Patty) with any questions.

Your fellowship and burden-sharing on this journey is a great blessing. Thank you.

Home

We are home. We arrived last night at midnight and stayed up until 3 a.m. soaking in the blessing of this small house whose walls have heard our story from the very beginning.

We were in the woods for some time now. It was dark and foreboding and we could not figure out which way was out. The skies were literally dark and gray in Seattle and the suffocating reality of this dire situation kept forcing its way into our weary hearts. When we got home, we put down our things and after running around like puppies sniffing our territory, we knelt before the Lord and we worshipped. Because whatever the situation, whatever the road ahead, we know that He deserves all of our praise. We sat, grandmas and grandpas, the kids, Mike and I, and we sang and offered up our prayers of thanksgiving. And just as His word promised, we traded our heavy burdens for sweet, otherworldly rest.

There is a clearing now, where light has filtered through. It's still the same forest with tall trees that block our way and hidden roots that threaten to trip us up. But there is that soft glow that brightens the path just in front of us so that we might not stumble, so that we would not fear. So we crane our necks up toward the hope that we might not be lost forever, that this journey won't overtake us and leave us for dead. We walk with arms outstretched in front of us, feeling for the weight of something substantial that we can lean into in case we are tempted to fall. And that is when we run into the unexpected company of people walking with us. We meet you there in this place we do not want to be and we see that you have chosen to accompany us so that we are not alone. Hallelujah.

He has never left us and He will never do so. Thank you for being the expression of God's love for us through your faithful prayers, heartfelt emails, generous gifts, delicious meals, thoughtful conversations, enveloping hugs, and countless more manifestations of love that empower us to keep moving one step at a time through the unknown.

We are making the best decisions we can with each piece of new information we receive about Ava's health. Currently, she is doing so well! The sounds of laughter and delight permeate every room in the house. She looks so good that it's hard to imagine there is disease lurking in her bones but, the truth is, it is there and so we are in constant prayer that her immune system would rise up and fight the most courageous battle of its life and attack every cancerous cell in her body. Mike had the conversation with Ava regarding her relapse and he said it went so smoothly. Although Ava was a little concerned that there were detectable cells, Mike reassured her that it was a small amount and that during her whole fight we would be together. Thank you for praying specifically for this. 

Ava will have a bone marrow biopsy done on Monday at Lurie's. If her disease has grown, we will most likely leave for Seattle right away even before Christmas. But, if her disease remains stable or, by God's grace is gone, we will reassess our plans at that time.

Oh, how we long to hear that she is disease free. How our ears stretch out to hear this good news. But, in the meantime, we continue to utter His promises over and over and over and over again until it has washed every fear away from us.

We don't yet know how, but He will be good to us.




Wednesday, December 16, 2015

Meal Train

The Lee family is back in Chicago now. The course of treatment for Ava is still unclear right now, but we do know that Ava will have another bone marrow biopsy done on Monday (December 21st) here in Chicago. This is to track the level of disease and see if it is staying the same, increasing or decreasing. The results of the biopsy might give some insight as to what the next steps are, as well as keep an eye on the cancer. It isn't always easy to tell if cancer is aggressive and fast-moving, or slow/more steady. Even with the results, it may be difficult to determine the best course of action. Thank you for your continued prayers.

In the meantime, the Lee family could really use some love in the form of meals! This will allow them to maximize their time together as a family, even more so while both sets of grandparents are here.

If you are able to provide a meal, whether homecooked or store-bought, please sign up here. If it's easier for you to remember going directly to the website www.takethemameal.com, you can search under "Lee" with the password "bright."

We will begin a fasting/prayer chain as well, and will hopefully have the details up later tonight.

Thank you so much for your continual friendship, support and prayers!

Tuesday, December 15, 2015

May All Your Dreams Come True

Yesterday Ava ate cake for the very first time ever...

To be able to watch her enjoy life in such a new way has been uplifting for us. Just one year ago, this situation would have been unfathomable as even the tiniest microscopic amount of wheat, milk, eggs, nuts, or soy would send her immediately into a life-ending anaphylactic reaction.

So, this is a day we have dreamed about for a long time. 

Wow, God, You are so good to us. Thank you for making our dreams come true.


video

Friday, December 11, 2015

Tentative Plans

We want to thank you, each of you, for the conversations you have had with God for our family during a time when it has been hard to stand up under our circumstances. It makes sense that we flit in and out of sleep praying for our girl but to hear that you are also laboring with us in love through prayer, well, that just gives us supernatural strength to endure.

We wanted to share some tentative plans so that you might know how to pray more specifically. First of all, Ava looks great and is in good spirits. Thank you for praying for her to get over this recent illness. Her eye is looking much better and she has been fever free since yesterday. The bumps under her chin could be cold sores so we PRAY that's the case. 

Dependent on how quickly she gets discharged from the hospital we are considering heading back to Chicago to regroup and to assess our options. More importantly, we want that time as a family. Ava's uncles, aunties, and grandparents will all be gathered under one roof to spend our Christmas together. Ava loves her family so much so this will be a magical time for her if we can pull it off. However, we haven't made a definitive decision because it would delay her treatment for several weeks...which won't be the best. We are still weighing our options.

When we talked to the oncologist here, we found out that Ava's leukemia expresses the CD33 gene. There is a drug called Mylotarg that can target this gene specifically which means it wouldn't harm the rest of her healthy cells. Unfortunately, this drug is given for compassionate use only at this time. We pray that they would approve this drug for Ava. Please pray specifically for this.

Her first step is to get into remission. She has never reached MRD negative in the past just with chemo but we are hoping that with the introduction of a new chemo drug like Mylotarg, that Ava might have a chance. Then, we would need to go to second transplant. We are considering a second cord blood transplant or a haploidentical transplant. Please pray for wisdom as the doctors decide which one would work better for her. 

We were given some tough news over the past week but our hope has been renewed by God's undeniable presence and by all the prayers from the Body of Christ. There was a time for mourning and now is the time to get up, brush ourselves off, and get back in the fight. Thank you for standing with us.

Thursday, December 10, 2015

Guide Us Home

I have been told that I can write. What you may not know is that I have struggled with a love/hate relationship with writing in the past. I always loved the idea of expressing myself but found it frustrating and difficult. I wanted to be an English major in college but after one too many times of losing my papers to computer issues, I threw in the towel. 

I only found the beauty of writing again when I had Ava. She was my inspiration. And now my inspiration is dying.

She woke up whimpering last night and we gently shook her awake. "What's wrong, Ava?" we asked. She told us about the nightmare that has been plaguing her for some time now. "You were on one plane and I was on another. And I wanted to be with you," she explained.

Are there words in our English vocabulary to explain this type of searing pain? If there is, I don't know them. I must learn them because I will need them.

After a bone marrow biopsy on Monday, we waited impatiently for her results. On Tuesday we got the call that there was a small amount of detectable disease in her marrow...

I want to end this post here because my temporary hopelessness calls out that it doesn't really matter what I say after this. There are options, there are therapies, but the truth is, Ava has fought long and hard already and the cancer has come back.

We met with the oncologist yesterday. There is a 50% chance she can get into remission, and then she will have to face the smaller percentage of hope that a second transplant will offer. So we talked about what no parents should have to discuss. 

We talked about death.

We sat there in that little room, on blue plastic chairs, and talked about what death would look like for my little girl if we let the disease run its course. He explained that she wouldn't feel pain, that they would promise to make her as comfortable as possible. What he doesn't know is that greatest pain for her is not so much the physical but the emotional, the spiritual pain of not being able to stay with us. And then we talked about what death would look like if her second transplant produced crazy amounts of GVHD. It would be painful and hard. 

We weren't just talking facts and statistics, we were talking about Ava. The same Ava that told the nurse, "Thank you," after being poked for an IV. The Ava that would brush the hair from my face and say, "I love you so much, Mama." The Ava that we have nursed back to health again and again. Ava, my girl, who has known suffering most of her life. This child who has brought unspeakable joy and laughter into our lives. My daughter who has left her imprints all over our house in drawers hidden with sweet notes, in misplaced toys under the bed, in countless memories we have shared in each room. Ava, my first born, whose sweet voice would sing praises, whose small hands would wrap tight around our heaving shoulders, whose tear drop eyes would turn up or down in laughter or sadness, whose soft cheeks would receive our kisses, whose little body would curl into ours, whose bright spirit would call for us to play and to live and to hope. 

Before we could even make a decision regarding whether or not we would go home to celebrate Christmas in Chicago before coming back for treatment, Ava has been admitted to the hospital. The cough and low grade fever that began on Monday is now full blown and there are herpes lesions in her eyes. There are also bumps that may indicate more cancerous lesions under her chin. We rushed her to the ER at 3:00 am after a fever of 102. We did not anticipate this situation at all. As I packed for Seattle, I purposefully put in 4 changes of clothes for each of us. We fit all of our belongings in one suitcase. There were no goodbyes, no cherished moments of sleeping in our bed altogether, no need to believe that we may not return home as a family of five. As the three of us lay in that small hospital bed this morning, I prayed that God would preserve this family. He could take it all. Our house, our cars, our degrees, our jobs, every dollar in our bank account, only please, could he spare this family, the only thing we treasure.

And then I put my shoes on and drove home to my other little loves. These tiny babies have been exposed to the atrocities of a broken world long before they have had a chance to fully live. I rushed home to find Jude had cried himself to sleep because he was so hungry from not being nursed. He was born at the tail end of Ava's transplant so even his birth story is mixed in with Ava's fight against cancer. He has been held and loved but he also has a flat head as a reminder of the times I've had to put him down to attend to the greater needs of his siblings. And then there's Gwen who asked why I came home without Ava. Her eyes flashed here and there searching for her best friend, Ava. Gwen has known grief. She has wiped tears from my eyes from a young age. She has gone days without seeing me or Mike. There have been weeks where her only friend was her iPad. This sweet girl, how will she cope without her sister? How will we parent her and Jude when our insides are scooped out and all that is left is a shell of who we were?

It seems cruel that Ava has relapsed in her skin. For most of her life she had such severe eczema that her skin was rough and cracked to the touch. After the transplant, her skin was so silky smooth that we couldn't stop stroking her cheeks and kissing her face. And then to find a life sucking, hope crushing, cyst there...

Oh God, what more could you want from our story? What more can be milked out from this experience? Will this chapter end only when Ava has died? Will it really be a lifetime of sorrow before we see the light and the beauty of your works?

I have been wondering if God's eyes are truly on us. I know, in my heart, that we are ever in his sight. But, my human heart stumbles at this point.

I find myself praying, "God, do you see us?"

We wipe her swollen herpes infected eye with a tissue. God, do you see us?
We brush our fingers under her chin to feel those sickening bumps. God, do you see us?
We watch her struggle to play although her body is weak from fighting off this virus. God, do you see us?
We strap her into the car in the cold hours of the morning to go to the ER. God, do you see us?
We tell her she looks beautiful when she asks if her eye makes her look strange. God, oh my God, do you see us?

We haven't told Ava yet. We don't know how to do this. As if our hearts are not broken enough, it is up to us to look in her eyes and tell her she is not done with this fight yet. As much pain as we feel, I will never fully know how difficult this journey has been for her and how much it will hurt her spirit when we tell her. But I hope that it will be enough for her to hear that we love her, and that we will never ever forsake her. And then I'm reminded that God loves us more. That His love is perfect and that His promises are true. He loves us and His goodness will be seen. But I am still flailing in the dark, trying to grab something tangible that will allow us to come up and breathe again.

I am wondering if maybe our hope for cure in this lifetime won't come to pass and we will have to look toward the hope of heaven. How we will endure the many many years without our girl, Ava, how we will stay standing when she is gone, seems impossible. We have called out to Him, asking that this cup be removed from our lives. It is too bitter to drink. We have made compromises that he cut our lives short and instead add more and more years to hers. Right now, there is silence and so we wait. My restless heart is searching here and there. Who can help us out of this mess? I want to run away from this situation but there is nowhere to go. Please bring us into Your temple and comfort us with the truth that You are near and that You have seen us.

Because we are lost at sea, oh Lord. Please, guide us home. 




(from Esther):

Friends, we are not in a good place right now. We have been looking for a way to say this but there doesn't seem to be a right way.

Ava had a bone marrow biopsy on Monday and we found out on Tuesday that she has relapsed in her marrow. It's a small amount now but expected to grow without treatment. We are discussing options.

She's in the ER right now for fevers and a viral infection that she is having difficulty fighting off. Thank you for your prayers that Ava be healed.

Tuesday, December 8, 2015

Ava's Re-Birthday Party

Thank you to everyone who tried to watch Ava's party via our live stream. We had some technical difficulties like not having sound for half of it but we were so encouraged by the 5 people that continued to watch while posting comments like "no sound," "can't hear," "what is going on?" Hehe. We are blessed to have friends like you-friends that stick it out and watch our silent movie debut! 

We have much to update on but we are here in Seattle for Ava's one year post transplant appointments. Every day is packed with doctors' visits so I don't have time to do a proper post but I wanted to give you a peek into Ava's party. Click the link below to watch the video slideshow we created for the party! 


We couldn't have made it this far without your prayers. We don't deserve any of it but we are thankful that God has been so good to us. He held us up under this suffocating blanket of suffering with the loving hands of all of you.

During this Christmas season, as we look to Christ in awe and adoration for his sacrificial love, we also remember each of you and the way that you made His love tangibly known to us. How can we ever thank Him and you? Maybe not on this earth, but we envision a day when we are praising Him in heaven and as we look to the left and to the right we will see you, and we will wink at you, and you will know. You will know you had a part in encouraging our faith and pointing us toward hope and love.







Monday, December 7, 2015

Back in Seattle

The Lee family arrived in Seattle late last night. Ava just finished having a bone marrow biopsy, bone marrow aspirate and lumbar puncture done. Here's a post from Esther:

And so it begins. We are in Seattle and Ava had 11 vials of blood taken after two tries of digging around for her veins. This girl is my hero.

Blood counts show a higher level of white blood cells. This could be an indication of infection or her relapse becoming more evident. Please, please pray that our sweet girl stays cancer free for a lifetime.




Saturday, December 5, 2015

We Are Going LIVE!

Ava's transplant birthday party will be going LIVE today at 4:30! Please tune in to join with us as we celebrate one year of new life. You can find the event at https://www.youtube.com/watch?v=ee9PByso0W0  The comments section will be open if you would like to interact with us live-time! The event will be recorded so that we can look back on it for many years to come. We hope to virtually see you there!
#abrightleeball #oneyearofnewlife #happyrebirthdayava




Thursday, December 3, 2015

God Is With Us Marching Through The Dark

Hi, it's been a while. Thank you for faithfully praying for our family even though it seems like we've fallen into a black hole of some sort. I am happy to report that it's nothing as dramatic as being lost in space. We have just been very busy...with good things. 

I have been wanting to update for a long time now and have had many posts swirling around in my head only to lose them to a thousand other thoughts vying for attention. But, fear not, I am back with updates on all that has been happening in the past few weeks. 

How is Ava?
Ava is thriving. Honestly, if it wasn't for that unexpected skin lesion turning up positive for leukemia, we would still be blissfully ignorant to her relapse. For a while our girl was lost but now we are seeing her come back with a voracious appetite to gain back all the moments that were wasted while battling these past 2 years. She sleeps very little because she just can't get enough of living. She goes to school when she can and loves her Pritchett family, goes to clinic once a week, and is enjoying being the oldest sister to Gwen and Jude. Watching Gwen and Ava play is a delight like no other-it's better than eating ice cream. Enough said.

Ava goes to clinic once a week and even had her blood drawn while vacationing in Florida. All her labs look stable at this time and we are thanking God for every precious day that he holds off her disease. We continue to pray that Ava would fall into the very small category of people who can walk away from aleukemic leukemia cutis with a story of miraculous healing. 

But for now, we continue to keep a close eye on her labs, her skin, and her overall appearance. The plan is to have weekly lab draws and monthly bone marrow biopsies. There is a small bump on her lower lip that will be evaluated this Friday by a dermatologist. If he finds it suspicious in any way, we'll have the bump excised and biopsied. We are praying that it really is nothing because if they do find more leukemia in her skin that would be our cue to begin treatment again.

With all this said, we have been experiencing a peace that we really shouldn't have in the midst of this storm. I don't know if it is denial and some people might even call us fools but we can't describe the joy and the peace that has infused our lives at this time. It's not acceptance of her death but hope, like none other, that she will live and live well.

How was the vacation?
It was delicious. Can a vacation be yummy? Ours sure was. There was never a question whether my parents would come along because if there are any two people that need a vacation, it's them. They have served us tirelessly these past few years and have emerged with a lot more wrinkles and gray hairs. Lucky for my mom, I sell skincare that has helped erase some of the damage we've caused. When Gwen asked my dad why his hair was so white, he said he dyed it so that he could make my mom look younger. Who said chivalry was dead? But really, that white hair did not come from a box of Walgreens' hair coloring kit. It was earned; he should wear it proud.

So even though it was supposed to be a much deserved vacation for them, my mom ended up cooking almost every day of our vacation so that we could have Korean food. For, how could a Korean survive without kimchee for even one day? (Roll eyes) I have learned not to fight a battle I can not win. 

We swam every morning, had kimchee for lunch, and then slowly ambled our way over to the parks. By the time we got there though, I was usually bossing people around and making everyone run to different rides so that we could maximize the time. Because, why the heck are those tickets so expensive? My poor parents were running through the parks trying to keep up. I showed no mercy. 

But, we really enjoyed it all, even the packed lines to catch the monorail. Of course the huge crowds made me slightly anxious about what we would do if there was a sudden zombie apocalypse. I can't think of a worse place to be for that type of event than in a line at Disney World. So I had to call Mike in for an emergency huddle to draw up a plan...is that weird? Seriously though, run for a Costco if you ever find yourself in a situation where there are zombies. It will have everything you need for at least a couple of years and the whole thing is made of concrete...ok, we are a little weird.

So we ate kimchee (I'm not sure I emphasized this enough), cotton candy, funnel cakes, seafood, and we just enjoyed the heck out of each other's company. It was so good for our souls to see Ava doing everything she couldn't do for the last few years like travel, swim, be in crowds, eat food off the floor...nah, just kidding. We still won't let her do that yet so she gets jealous that Gwen gets all the crumbs that fall. Kidding again.

We are so thankful to all our family and friends that made this trip possible by donating miles, paying for hotels, lending cars, slipping us spending money, and sending us out with love. When I begin to feel bad, all I have to do is look around me. God has been good to us through you. 

How are Gwen and Jude?
Gwen is doing really well. Her skin has cleared up almost completely and she is making up for the lost years without her sister by sticking close to her side. She's been laughing so hard that she's triggered her asthma a few times! She's enjoying pre-school, playing with Pippin, and telling me several times a day how much she reaaaaaalllly loves candy and wishes she can have some right now.

Jude is 10 months old and still not crawling, and I am crying happy tears. Thank you JESUS! I have never been so ecstatic to have a developmentally delayed child. My hope for Ava was to have her learn everything super fast. But I have done a lot of parenting since then and now I am so much wiser about what I hope for. He eats a lot of everything and so far has been exposed to peanut, wheat, soy, and milk (in baked goods) without any reactions. This is huge. Thank you to everyone that has prayed for him not to have the same allergy issues as Ava and Gwen. 

How are we?
There are strong days and weak days, good moments and bad. Most of the time we are truly at peace. There are still times when I will need to excuse myself to bring my heavy heart before the Lord. I wrestle with this burden daily, laying it down and picking it back up again. I reason with God about how our family would NOT be okay if Ava was taken from us. I listen to him speak about how he understands our gut wrenching pain, for he personally knows this turmoil and wretchedness. He, too, has felt the shattering of a broken heart and a sadness so deep that there seems to be no end. I still jolt awake at night and reach for her to get in one more hug, one more kiss, one more scent. But the morning comes, as it always does, with its bright rays of hope and I have felt the joy that God has promised us with the dawning day.

I'm holding on to his promises especially because "Lord to whom shall we go? You have the words of eternal life." James 6:68 

What's next?
Ava will have her transplant party this Saturday and then we head off to Seattle on Sunday for her one year post transplant follow up appointments. It was sad because when she relapsed they called and asked if we still wanted to go through with the schedule. I guess there isn't a point to it all if she'll have to fight again soon. But, we will proceed with them because Mike and I agreed that we wouldn't make decisions out of fear but out of our immeasurable love for her. Because love will win. It already has.



"It took me a while to see the dream was all gone, like a fool I kept singing my song.
I keep t
alking like nothing is wrong, just a fool, carrying on. 
I tried to live it well, but I can barely breathe as the devil he dared me to bend.
Is to stay alive and keep our souls from dying a desperate man's hope in the end?

See, the sun's gone, we can’t see where we are. Are we fools for marching through the dark?
And though the light’s gone we can’t be very far. Yes, the fools are marching through the dark.

I was young and strong, and then was weak and I fell.
Like a fool I thought all would be well.
I keep walking so that no one can tell that my heartache is a prison cell.
I tried to keep the faith, but it’s so hard to believe as my doubts they conspire to the end.
So I’m holding out, praying God would heal. It’s a desperate hope to defend.


The wise man said give up your fight.
That hope is for fools and he’s right.
But I won’t give up, no I won’t give up.

If we hold on, and though we carry scars, God is with us marching through the dark.
Turn the light on, and hope will bring us far. Yes, the fools are marching through the dark.

So turn the light on, because home is not too far. God is with us marching through the dark." - Fools Marching | Tim Be Told 

(Currently one of Ava's favorite songs)


Wednesday, December 2, 2015

If You Keep on Believing

We are getting ready for Ava's One Year Post Transplant party. It will be themed after Cinderella's Ball. I guess it goes without saying that every chance we have to celebrate her life is a bitter-sweet moment knowing all that we know. We wanted to invite every single one of you but our list was limited to whatever space we had in our church's gymnasium. We plan on having her party streamed live so please stay tuned for how you can join us remotely as we thank God for the year he has given us with our girl, Ava.

Ava will be dancing with her daddy to this song:
https://www.youtube.com/watch?v=ZSb4BNCQiHw

"A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep

Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
The dream that you wish will come true

A dream is a wish your heart makes
When you're feeling small, yeah
Alone in the night you whisper
Thinking no one can hear you at all
You wake with the morning sunlight
To find fortune that is smiling on you


Don't let your heart be filled with sorrow
For all you know, tomorrow
The dream that you wish will come true
No matter how your heart is grieving
If you keep on believing
The dream that you wish will come true"


It is beautiful and hard to hear. Yes, Lord. Please make our dreams come true.
#abrightleeball #keeponbelieving

It was fun shopping for a dress for Ava to wear to her Cinderella themed transplant party. Shhh, it's a secret though. All she knows is that she gets to wear a pretty dress!

The first pair of heels I bought for my girl, Ava. In my defense, she has been begging for heels for ages now. I wonder where she gets it from...;) I pray there will be many more occasions for her to wreck her feet with heels in the future. She wanted to wear them to Chikfila yesterday. My answer: heeeck, no. #notonmywatch 

Thank You!

Thank you to everyone who came out to Chikfila in support of our family last night. It was an immensely encouraging night for us and it was amazing to see Ava run and play with her long lost friends and to even climb around in the Chikfila play room. We haven't done that in about 2 years. The night was a dream come true in many ways but the most powerful thing was to see all the people that have prayed for us gather in one room to celebrate the power of love. Your prayers have made a mighty sound and the Lord has surely heard our cries.
‪#‎thankyouisnotenough‬ ‪#‎weseehisgoodness‬

Thursday, November 26, 2015

Your Love, Oh Lord

And there it was again, on the last day, the largest rainbow we had ever seen stretching wide across the sky reminding us that God's arm is not too short to save.

364 days ago, we celebrated Thanksgiving in Seattle huddled around Ava's hospital bed. Our friend had ordered us a delicious meal from one of her favorite restaurants and we carefully opened each package and savored the familiar smells. We were in such an unfamiliar place. We were no stranger to the hospital setting, but this thing we were doing, this bringing our daughter to the brink of death with radiation to infuse her with a second chance at life was new, and scary, and lonely. 

With Ava's bed as our table, we spread out our thanksgiving feast and ate our pumpkin pie. I'm not going to lie, it felt kind of terrible to celebrate a day of thanksgiving in the very center of our pain and uncertainty.

Today, we are gathered around a table brimming with food and a house that is bustling with family. It's the real deal. And, so with hearts full we thank God for how far he has brought us and for his promises that precede even our darkest days and we remember, again, that he is faithful even when our world seems to be crumbling before our eyes. For how could we forget his faithfulness and love when he paints it across the sky for our eyes to see and our hearts to witness that he is good, his love endures forever.
#‎werememberyourpromises‬ ‪#‎forhowcouldweforget‬ ‪#‎yourlove‬‪ #‎thanksgiving2015‬
  



Tuesday, November 24, 2015

Remember Mercy


This is the rainbow that greeted us on our first day touring Disney world. This is the rainbow that promises mercy. Remember mercy, oh Lord.‪#‎wearesosmall‬ ‪#‎butyouseeus‬ ‪#‎rememberus‬


Monday, November 23, 2015

Re-Birthday

Happy re-birthday Ava Bright Lee (November 21st)!!! We have been gifted another year of life because of the simple and thoughtful act of a mother donating her baby's cord blood. We are thankful to that mama, and to you, and to God for making this last year an unforgettable one.

Wednesday, November 18, 2015

Chick-Fil-A Fundraiser

As any family walking the road of cancer knows, medical bills can be staggering. (That's even assuming that the billing process has been accurate and smooth with no errors...) Thanks to the efforts of some of the Lees' friends, a fundraising event for Ava has been set up at Chick-Fil-A in Kildeer, IL! 

Date: Tuesday, December 1st
Time: 5pm-8pm
Place: Chick-Fil-A (by Deer Park Mall)
            20429 N. Rand Rd.
            Kildeer, IL

Chick-Fil-A will donate a portion of proceeds to the Lee family for all orders placed during this time. You must mention Ava when ordering. (Please note there is no active soliciting of customers to do so the night of the event). The Lee family will receive 20% of proceeds if the total reaches over $1500 (otherwise there's a tiered system if totals are less than that).

Guess what? Gift card purchases count toward the total! This isn't typical, but Chick-Fil-A has generously allowed it for Ava. Please note that gift card purchases must be made in person, as credit cards will not be accepted over the phone.

The Lee family (at least some members, if not all) plan to be at Chick-Fil-A during the fundraiser, so come on out and show them your love and support and:



For those of you who are unable to attend the event but would like to support the Lee family financially, please see the Ways to Help page for more information. It also notes a new YouCaring donation site that was created by some friends of the Lees.

A Year Ago

At Disney now celebrating her one year transplant anniversary week. One year ago she fought hard for a chance to do what she is doing today- swimming, running, playing. She may have to fight again soon. Please pray that, instead, she would be healed and that she could keep enjoying her childhood just like a 7 year old should. Thank you for your love and prayers always!

November 18, 2014
Tell me, girl. How do you stay so positive? #firstdayradiation #daynegative4

Monday, November 16, 2015

Comments

I was told a while back that it is difficult to leave comments on the page. Sorry it took me so long to look into. I think the problem is fixed now so you can comment away! Thank you for all of your comments and thoughts and prayers for our family.

With love,
Esther

Saturday, November 14, 2015

The Pain Will End

Before this whole relapse, we were barreling toward a goal. Time could not move fast enough because we were racing toward the finish line of Ava's treatment. Ava's one year transplant anniversary was quickly approaching and so was her debut back to school. We were making all kinds of plans to travel now that she was allowed to be out in public after one year of limited contact with the outside world due to her immunosuppressed state.

In one instant our plans changed and now we are gripping time in a death vice willing it to slow down. I'm savoring the days, the getting up and stretching, the kneeling down and praying, the getting breakfast, the appointments and schedules that shift with each day, the eating dinner, the playing, the baths, the bed time stories, and even the late night chatter that lingers long past bedtime. It's a gift. It's a gift. I keep telling myself this. So there are days I am so thankful for God's faithfulness to us and there is a peace that settles into the cracks of my devastated heart.

Yet there are days that are painful still. No matter how much we slow it down, things are still moving too fast. Now that Ava goes to school, time is even more precious and limited. I've tried to talk her out of going. It's not that great, I tell her. Because I'm such a great mom, I try to convince her to stay home and play with me. But she won't have any of that, not Ava. She carefully puts her homework away in her folder and tells me it's time for bed because she has to wake up for school. Oh God, it is so hard to share her.

They wanted a bedtime story the other day but it was getting so late. I told them, "There's always tomorrow." The weight of grief after those words was substantial and it shushed me into silence. The truth is, we can't rely on tomorrow. We only have today. It's not a lot but it's what we have, so we squeeze the heck out of it. She wants to hold the baby during his nap time so I quickly bring him into the room for cuddles because we only have today. Jeremy Lin invites us to a basketball game. We are graciously given choices: this Friday or Dec 5th? We choose sooner because we only have today. We expedite the Disney trip we had planned for February to this Tuesday...We only have today.

A few days ago we dropped Ava off for her first day of school. She flashed us her toothy grin with her four permanent teeth growing in all crazy and kissed us goodbye. Then she was off, walking down the long hall toward her independence. Mike, Gwen, and I sort of slumped back to the car and then decided to go to IHOP to quell the emptiness a bit. We asked for a booth for three and sat down to order breakfast. "I miss Ava. I want to go see her," Gwen said as soon as she sat down. And instantly, before I could even stop it, my mind had gone to a place where Ava was no longer here. It was a fierce pain to imagine a day when we would long for her, to kiss her, stroke her soft cheeks, tousle her wavy hair, and want to hear that laugh that captures our attention and our hearts, yet without any consolation we would have to gulp down the bitter reality of her absence.

I'll let myself go there sometimes. I can't stay there long but I feel like I need to visit these feelings to prepare myself. I think about how this could be our last Thanksgiving, our last Christmas, our last vacation, our last...I'll drive down the street and wonder how we will stay in this neighborhood if she is gone. I stare at her from across the kitchen counter while she talks and I burn her image into my head because I fear there will be a day I frantically look for her and my memory will be the only way to see her. 

I reason with myself that maybe if I can slowly ease into this pain, it won't hurt so much if the time comes. It's the most stupid exercise I've ever participated in. There is no such thing as being prepared to live life without my first born child. And my precious Gwen. How will she cope? She is already lost, wandering the house looking for her sister when she's away at school. How do we tell her that no matter how hard we search, we won't find her here anymore? There is no amount of practice that will soften the blow. And then I break down, right there in the car, like a crazy person. Tears streaking down and the same sentence on repeat, "I can't, Lord. I can't, Lord. I can't."

I'm beginning to see that I don't have to. I'm not called to imagine the worst to see if I can deal with it. God has no expectations for me to do this well. He knows this pain. He once endured it himself. So he doesn't need me to explain to him how much this hurts. 

My sister-in-law recently had her second baby and Ava was really concerned when we talked about a complication she had while giving birth.

"Is it really painful?" she asked. I nodded "Yes." 

"Well, the pain will end. Right, mama? And now baby Stephen is here!" she said.

Yes, My Love. The pain will end. It will always end. Maybe not on this side of heaven but there will be a time and a place where there will be no more room for pain. And the pain that was allowed will produce something so beautiful that, one day when the purpose is revealed, we will step back speechless and with hands raised we will praise the Father for his perfect handiwork and marvel at all that he has done. 

After the excitement of meeting Jeremy Lin, the girls fell asleep in the car and so we transferred them over to bed with their #teamavabright shirts still on. It was a good reminder to wake up to. This season of pain is so excruciating but, God, truly let it only be a moment in time. We pray for unending joy to rise up with the morning sun.



"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever." Revelation 21:4

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

We have found another lump under Ava's lip. We won't be able to biopsy it before our trip to Disney because it will require a plastic surgeon. Please, please pray with us that it is absolutely NOT leukemia or any other type of malignancy. Thank you so much for your prayers.

Thursday, November 12, 2015

Lee Family 2015

Kenny Nakai was with us from the very beginning, making us smile even while our hearts were breaking. I reached out to him about 2 weeks before we received news of Ava's relapse. I was hoping to get a family photo session with all of us happy and healthy now that Ava had reached her one year post transplant anniversary. Even though Ava's body is still fighting hard, we have joy in ways that are otherworldly. We have this moment, this memory, this lifetime. Thank you for these pictures, Kenny. They mean more to us than we could explain.
#‎batteredbutnotbroken‬ ‪#‎beautifullife‬ ‪#‎bestillmyheart‬
















Wednesday, November 11, 2015

Every Hour

At the clinic, taking our first step in faith by pulling Ava's PICC line. We were told it would be easy enough to replace if we needed it in the future. But for now, we got plans...like taking baths, swimming, and holding Jude! We know God can work miracles but in the meantime we will abide in his timing and continue to trust that all will work out for the good of those who love him.

What good could come of a situation like this? Well, for starters, there's childlike faith, deep gratitude for every moment of life, and beautiful spontaneous hymns of praise.
‪#‎Godleadtheway‬ ‪#‎weneedyouLord‬ ‪#‎everyhour‬



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