Saturday, October 31, 2015

I have been waiting on this post for some time now...It's been a struggle to know what to divulge because 1) we don't have our second opinion yet and 2) it is really painful to ponder. BUT, I have decided it's time to say something so that your prayers might be specifically targeted toward our specific needs.

It seems Ava has relapsed only in her skin, according to the pathologists at Lurie's. They saw leukemic cells in the skin and with special staining saw that the cells were consistent with T-Cell ALL. Her marrow and spinal fluid are clear. This is a very rare condition called Aleukemic Leukemia Cutis. I shouldn't have googled it. I feel sick to my stomach and, I'll share vulnerably, it takes everything in me to convert my thoughts to hope rather than the impending feeling that this is the beginning of the end.

ALC can precede any disease to marrow and peripheral blood and by the time it is diagnosed it can be a dismal few months before it becomes fatal. At this time, there is no solid plan in place as we are still seeking a second pair of eyes from Seattle to look at her cells. One treatment plan would consist of a second transplant, and most likely it would be a haplo-identifical transplant which means that they would use either Mike or myself to be her donor. Does this sound crazy and last ditch? It's because it is.

We humbly accept your prayers that Ava's skin would miraculously not show any leukemic cells when looked at by Seattle. We pray that this is a very sick mistake. Our sweet, brave girl has been through hell and we are pleading for her to have a break.

But, if this is indeed ALC, we pray that she would beat the 80%+ odds of failure and that she would rise up against this and fight with all the strength that her little body has left.

We are in Champaign now enjoying our ignorance and spending precious time with family. I went to large group for the first time in years and the sermon was about dreaming dreams for your children until they are ready to dream them for themselves. I admit, the minute I got the call, I stopped dreaming for Ava and I spent time in mourning.

I want to dream big things for Ava. Because no matter how far the fall is and how painful it will be if they are not realized, I want to hope for her and to point her toward joy and love and God. As long as she has breath we will stand by her and choose to live and live and live even if we'd rather just die.

(We have not told Ava anything yet, so please refrain from emailing or discussing any details of disease with her. We want to let her have as many days possible enjoying herself.)



**********
(FB post from Mike):
I'm hoping, dreaming, praying for an honest mistake. I've never so desperately wanted an error or mishap to have occurred. I'm imagining all the good that can come out of someone messing up. Thank God no one is perfect.

No Definitive Results Yet

(From Esther):

Some of you may have been waiting for an update for many hours now so I want to thank you so much for your patience!

We actually updated via the blog but decided to take it down because the explanation was getting a little confusing. The truth is, it is a confounding situation. Ava's marrow did not reveal any disease! But the pathologists in Chicago are certain they detected leukemia in her skin. Apparently to relapse only in your skin is incredibly rare. We will not have a game plan until we get a second opinion from Seattle regarding the skin.

We thank you for praying with us during this waiting period. We pray that Ava's biopsy would reveal no leukemia cells in her skin and that no further treatment would be necessary.

Happy candy day from a bride, Elsa, and a disgruntled monkey.
<3


Thursday, October 29, 2015

Friends

(From Esther):

Read a part of Job last night and, I have to say, his friends really SUCKED. But, you, you have been a breath of fresh air, a fountain in the desert. And although we don't know which way is up and what is the truth right now, we are in AWE of how you are sitting here with us.

I imagine, in my crazy mind, that we are all in a room sitting in a circle. We are devastated and torn apart, but you are there. Just silently being with us. It's strengthening and humbling all mixed together. It's precious and we are so thankful.

Ava got her PICC line yesterday along with a bone marrow biopsy and collection of her spinal fluid. She was so upset to go into surgery but my dear friend Sue Park was able to take her back and be with her until she fell asleep. She was so pissed when she got up but some jello and Chickfila brought her back to her senses.

We got a call regarding her preliminary results. It looks like there is no disease that is evident to the eye in her spinal fluid or her bone marrow. All her labs will be sent to Seattle to check the most sensitive test to see if she remains MRD negative. Her skin samples are also being sent there to recheck the results. We should know more info by either today or tomorrow. Treatment will differ depending on whether she only has leukemia in the skin as opposed to in her marrow as well. We are praying fervently that by some miracle, all her test would come back negative.

Please pray that we would have wisdom and be decisive in her treatment options should her tests come back positive for disease. Still praying for negative though.

‪#‎teamavabright‬ ‪#‎prayingforamiracle‬ ‪#‎ourfriendsrock‬

It's Okay to Cry


Just moments after this picture was taken, we all broke down in tears. Mike too. He wiped his tears on her "be brave" shirt. She said it was the first time she saw her daddy cry.

We told her it was okay not to be brave. Be whatever feeling you want, Ava. We will be with you through it all.

She's tired and said she wishes she could go to heaven where she'd be done with this stupid fight.

It is tougher this time around. Maybe because we know that the cancer is aggressive. Maybe because we now know how hard the fight is. Maybe because we have already seen her go through this once before and our hearts can't take it again. We're not ashamed to ask for prayers.
#teamavabright





Tuesday, October 27, 2015

Broken

We're updating with broken and devastated hearts. It appears Ava has relapsed. The bump under her chin revealed leukemic cells. She will be going back into surgery tomorrow to get a PICC line placed in her arm and a bone marrow biopsy. I don't know what to say. Your prayers mean so much to us. We hope against all hope that this is a mistake. Will you please pray the same with us? And if not, then strength, strength like never before to see her through.


At Yogurt Land and Ava and Gwen's favorite dairy-free flavors are here! Want to scream and cry from all the news today but, first, must eat icecream.

Jesus, You be glorified.

Monday, October 26, 2015

Give Me Jesus

video

I love jamming with this chick. This is a song I wanted to sing at my wedding but didn't get to. Ah, if only I knew then in full what I know now, that only he can satisfy...I would have sung it in dedication of all that was and is and is to come in this life. It's not too late though, so give me Jesus.

Saturday, October 24, 2015

Facebook Catch up

October 22:
It was almost exactly one year ago that Ava had a Hickman line placed in her chest. It was the first step into the most terrifying journey of our lives. Today, by God's grace, the Hickman is finally coming out! 

With the removal of the line, the doctors are also going to take a biopsy of a small growth that was found under her chin to rule out any new cancers. Asking for prayer against any setbacks in her health.

Congratulations on getting your line out today, Ava! We are so proud of you and how brave you have been. You have been gifted with the best support system ever, so always remember that it was the love and prayers of wonderful people that carried you this far.





Later that day...

Just got out of surgery. Everything went well! Ava wasn't feeling so good from the anesthesia and her incision hurt. Mike said maybe I should take the picture when she is not in pain. But even in the presence of pain, there are still reasons to celebrate.
#certificateofcelebration #ohhappyday


October 23:
Ava has been obsessed with vlogging ever since watching her favorite vloggers, AndymetSonia.

It is a perfect day for an entry because she reached a pretty amazing milestone! Don't mind my creepy whispering. Gwen was sleeping right next to us and I was trying to be quiet. Ava didn't get the hint, but that's okay. Today, she can do what she wants.

Also, we clearly do not know how to create catchy vlogs, so anyone willing to share their expertise will be handsomely rewarded with squishy hugs.
‪#‎3thumbsup‬ ‪#‎aintnothinggonnastopus‬

video


Tuesday, October 20, 2015

Joy in Tousled Hair

"Are you happy?" I asked Ava as I dried off her hair. This was a question I asked the girls all the time in the past. And as those words slipped out of my mouth, I realized I had not asked it in a long time, as in 2 years time.

I was always concerned with their happiness mostly because I felt so bad all the time. I felt bad that Ava was allergic to milk, eggs, nuts, wheat, soy, beans, oats, shellfish, fish, chestnut and coconut. I felt bad that Ava experienced anaphylaxis over 10 times in her short life and that Gwen was allergic to milk, eggs, nuts, soy, oats, sunflower, and chicken and that I was working full time and sometimes coming home too late to play. I felt bad that I couldn't do more for them, be more present, be more fun, be anybody but who I was. It never felt like I did enough, or that they had enough, or that anything was enough. 

But they always answered, "YES! We are happy girls!" And then February 2014 came, and Ava had high fevers that just wouldn't go away even with the help of antibiotics. A few weeks prior to that she had complained of joint pains that the doctor and I had dismissed as growing pains. We checked in to Lutheran General on February 27th to get IV antibiotics for what was supposed to be MRSA. Then the unexpected happened and the doctor came in to say that her white blood cells were high, way too high to be normal. They would need to redo the test because it was most likely a fluke and Mike and I were kind of pissed that they would need to stick Ava again. The results came back a second time and this time two residents brought us into a family room and, perhaps because of the novelty of it all, they delivered the news with smirks that they could not hide. It was so cool to them to be able to discover and diagnose leukemia during their field training. It was so devastating to us to hear that our beautiful baby girl would now have to fight for her life in a different way from all the years we fought before. 

That's when I stopped asking if they were happy. Mainly because happiness was a luxury we didn't have time for but also because how could they possibly be happy in the middle of this storm. Gwen went from content second child to an insecure only child when Mike and I left to be by Ava's side. By the time she came to visit us at Lurie's, she was a different kid. I remember being so mad at my mom. Why were her pants too short? Why did she have small, hard boogers in her nose? I grilled her in an angry voice. But really, I was just mad at myself. How could I have failed to protect her innocence? And Ava. How could she ever experience happiness again now that death was at her door?

There are so many distressing things about this journey that sneak up as unwanted memories throughout the day. I'll catch myself looking at the girls playing and though my eyes are seeing the present, I'm whipped back to the past and my brain will simultaneously process a different memory and soon my eyes have gone blank, my mind is completely fixated on remembering the details of another day, and only the shrieks of the girls playing can eventually pull me out of my trance. It's like we've gone to war and have seen unspeakable things and now can't assimilate back to civilian life. 

But then there are those memories that I treasure because I see how much has been done by this trial in regards to perspective. 
There's one memory that comes back to me time and again and I welcome it. 

It's midday at the hospital. The sun is streaming into our little room where we have nothing but a few clothes in the drawer and a few toys on the shelf. But that little bare room holds everything my heart has ever treasured. The girls are resting comfortably on the hospital bed with their limbs intertwined and their heads bent toward each other watching a show. Mike is in the corner eating a meal and I am on the couch/bed, my belly bursting with the presence of jude, simply observing the scene. When I think about it, I'm enveloped in an inexplicable warmth and a longing to go back to those days of simple joys.

And now, as I write this, I see that though taxed and tested we rode on the wings of joy. Because joy is not dependent on happiness. Happiness is a feeling that is ever fleeting, but joy is a state of being that is ever present from our relationship with Christ. Because though our bodies may fail, we shall see God.

"Yes, I'm happy! Can you make my hair as crazy as possible?" she replied. So I tousled her hair and flipped it this way and that to bring a smile to her face. And I realized that, this girl, she knew joy and every "Yes!" she exclaimed when I asked if she was happy was an acknowledgement that her soul was satisfied. 

I am learning so many lessons in these later years of my life and the ones that have taught me the most have not been theologians or professors but small, unassuming and humble teachers, my very own children. I revere their childlike faith and hope that my heart would mirror the attitude of theirs. With or without hair, Ava has known joy in her life. It's not what I can give them, or what they have, or the circumstances of life that bring joy. It's the presence of God and we are filled with it in every corner of our house, in every corner of our souls. So whether in tousled crazy hair or a tousled crazy life, joy abounds.

“We're depending on God; he's everything we need. What's more, our hearts brim with joy since we've taken for our own his holy name. Love us, God, with all you've got — that's what we're depending on.” (Psalm 33:20-22 MSG)



Joy in tousled hair

Saturday, October 17, 2015

One Year of New Life

I teared up a bit watching Mike do the very last dressing change on Ava before she gets her line removed this Thursday. He's done way more than I have, around 50, I believe.

It's strange how things are beginning to hit us in fresh waves of joy and grief as we process all that's happened in the last 2 years. Some call it post traumatic stress-a term I never thought we'd associate ourselves with. But now that the pace isn't so fast and we are left with time to think about all that's happened, we certainly notice how difficult it has been.

For instance, tonight it dawned on me for the first time ever that Ava had two lines protruding from her chest. It must have been so uncomfortable to have those rubber lines dangling from her body but we never had time to feel sorry for her or think about how unnatural it was. The Hickman double lumen line was a necessity for her and we all had to do our part. Her part was to endure the treatments; our part was to make sure we didn't fall apart.

I actually remember being in such denial of the gravity of it all that I asked the surgeon to please place the line where the scar wouldn't show if she ever wanted to wear a bikini. I think it was my way of dealing with the impossible thought that my child could maybe die. It forced my mind to believe there would be a day when our biggest problem would be finding a swimming suit that wouldn't betray all the pain of her past...

Wow, I didn't anticipate having so much to say about her dressing change. I've been surprised with the sudden emotions that have snuck up on us as we approach Ava's one year post transplant anniversary. It's a bitter sweet time of celebration and reflection, two things that we may not stop doing for a long while.

Thanks for joining with us on this journey and for welcoming us back from the weary road with outstretched arms.
‪#‎byebyehickman‬ ‪#‎mygirlava‬ ‪#‎oneyearofnewlife‬





Saturday, October 10, 2015

YAHOO!

UPDATE:
Ava's numbers were all back to normal and we are set to have her Hickman line pulled as soon as possible! WOOHOO! Thank you for your prayers!


We are at clinic and hoping for good numbers today so we can get her Hickman line removed!! This would be a monumental milestone. No more Hickman line means no more open access straight into her heart. In other words, she done good! 😉
‪#‎goavago‬ ‪#‎teamavabright‬






Wednesday, October 7, 2015

My Warrior

Gwen had a neurology appointment today to discuss the implications of her headaches and the cysts they found in her brain. It was reassuring to hear that the headaches were most likely not caused by the cysts. Instead, the neurologist told us that Gwen was likely physically reacting to all of the emotional stress from the past two years of dealing with her sister's cancer.

Oof. My four year old is experiencing stress. I had wished my children's youth would be golden not shrouded in pain. I wanted them waking up to excitement for what the day holds, not worrying about whether or not they would live to see a better day. Siblings of cancer kids have endured much.

Dear Gwen,
I'm sorry we couldn't protect you from the suffering. You are strong beyond your years. When our grief was too much and we hunched our shoulders over in defeat, you lifted up our chins and our spirits as you searched to meet our eyes. With deep compassion you felt for tears and if they were wet, as often they were, you dried them and told us not to cry. You are a protector of our hearts, even taking our burdens as your own. They say you are too young to know, but you have known and loved and suffered alongside us for years. Thank you and I'm sorry.

Today we spent the day watching dolphins, eating Chikfila and icecream. Your eyes sparkled and your smile dazzled. Here's to many more days doing what we couldn't do for you for the past two years. Here's to you, my pint-sized warrior.
Love,
Mama








Sunday, October 4, 2015

A New Season

We are nearing Ava's one year transplant anniversary. The Fall brings back tons of memories because just last year we were preparing to head off to Seattle to seek remission through a transplant. With this in mind, everything we did was with the purpose of making memories as a family.

We are in a new season of our lives in every sense. Today we do things in celebration of how far he has brought us.

Although we don't know the number of days we have on earth, we find comfort in abiding under the shelter of his wings. And we give thanks for each new day we wake up to Ava's smiling face.
‪#‎anewseason‬ ‪#‎glorytogod‬




Child, I just love you.
‪#‎joyunspeakable‬ ‪#‎mylove‬