Saturday, November 7, 2015

Sanctuary of Hope

Wednesday. We got the confirmation of isolated relapse in the skin on Wednesday, right after our second Red Robin date, just as we were transitioning the kids' playhouse back into a shed for the winter. Mike was carefully tetrising all of the bikes, toys, and bins away so that we could access them again in the Spring. We took the call inside of the shed huddled close together so that we could hear the words being conveyed over the speakerphone.

"I'm so sorry. Seattle has confirmed isolated relapse in the skin. We have a few options..."

We sat on the swings, the very swings where we have pushed our children toward the sky hearing them squeal with delight at the freedom of flying. Mike and I stared at the ground and the tears formed. How could this be? How could we make these decisions, all of them worse than the other?

Yesterday, we went back to Lurie's for a PET CT to see what our real choices were. If the PET revealed leukemia in her body we decided we would purse the most aggressive treatment. If the PET was clear, we would be at a crossroads again. We watched as they injected her with radioactive sugar and then laid her down on the table as we have done many times before. She looked at me and asked me not to go and I promised I would stay with her until she fell asleep. And though she hates sedation, she nodded her head and closed her eyes as the medicine set in. There were still unshed tears in the corners of her eyes and I wiped those away because I didn't want them to fall when I wasn't there.

She woke up beautifully in the recovery room and I was pretty dang proud when the nurses praised her up and down for how well-mannered she was. I wanted to tell them that she was a pretty special girl and they were lucky to have her as a patient but I decided to exercise humility and just smiled when they told me she woke up calmly, looked around, and said "Hello, I'm hungry."

We got the good news that the PET came back clear except for one small unusual spot in the lungs that is likely from a virus. The doctor told us our options again and together we agreed that we would not be pursing a second transplant at this time.

We do not understand God's ways and sometimes it is tempting to believe that the life that we were handed was a cruel twist of fate. Thank God that we don't believe in fate and that we do believe in a God that is so good. A God that sacrificed his only son for a world that despised him, a God that had to turn away because of the pain when Jesus hung on the cross, a God that absolutely could have saved his own Son but chose to withhold his hand out of his love for us...

I have circled back to the story of Abraham and Isaac through different avenues this week. Whether it was my own personal reading, or the story the kids wanted to hear at bedtime, or through a conversation with another cancer mom, it has come back again and again to minister to my heart. Look, I don't believe I have faith like my forefathers nor do I consider this a blessing right now, but I can't deny the spirit of peace knowing HE walks with ME just as he walked with Abraham during the most impossible scene.

This very benign looking lump was biopsied the same day Ava's Hickman line was removed. The same moment we ended her transplant journey, we picked up the next journey and it was not what we anticipated. We thought we were headed for glorious normal days but instead we were given relapse. Why? God, are you so cruel that you would allow our day of celebration to be stolen away by grief again? No. He is not a God of cruelty or confusion or chaos. He does not delight in my sorrow. His word says that he collects our tears and records them in his book. Jesus intercedes for us at the right hand of God. And God listens to the pleas of his people.

Don't get me wrong. This is not easy. We have been on our faces, screaming out that God would take this cup. But, in the well of our darkest sorrow, we have found sanctuary in his word and in the hope of his promises.

So...what are we going to do? Let me first explain what Aleuekmic Leukemia Cutis is. This very rare disease is simply the presence of leukemia in a site other than systemically in the bone marrow. There is hardly any literature on it so there is no protocol to follow. Our doctor has reached out to doctors across the country and into Canada and the UK. Experience with it has been limited to a few cases and everyone that is mentioned in literature, save two people, eventually relapsed in the marrow and died within 3-12 months after initial diagnosis.

But, through tons of prayer we have decided to watch and see. It is the preferred option of at least 4 of the doctors that were consulted. We have given chemo, radiation, and stem cell transplant a chance, and there has always been a clear, "best" decision. This is the first time we get to consider several options with no "wrong" choice. One of them is to wait and see. Does this mean we are giving up? Absolutely not. We are giving Ava the gift of time and life and joy and hope.

One doctor said it perfectly. She said throughout her many years of practicing, she has seen miracles. We have seen them too. Ava is a miracle.

After we were done with that phone call, Mike went back to rearranging the shed so that their toys could be brought out in the spring and I looked at him like, "Why does it even matter anymore?"

But now, I understand. It matters because there is hope. We have hope that we will brush away the twigs and debris of our past and step into a new season of life. Oh Lord, quicken that day and let it be so.



Have you looked into immunotherapy and have you heard of the baby that recently went into remission from her aggressive cancer?
Yes, thank you to everyone who has emailed us this interesting article. At this time, it is only available for certain types of leukemias. Unfortunately, due to Ava having Biphenotypic Leukemia she does not qualify. We hope and pray that in the next few months, breakthrough therapies will be discovered to help all cancer patients.

Why not go to transplant again?
Transplants are very difficult and risky procedures. I know Ava has made it look like a cake-walk but she beat a lot of odds just to be here today. She's just amazing like that. Reality is, second transplants often are toxic and fatal or can leave you with a host of side effects that would severely diminish quality of life. Should she relapse in her marrow, we may reconsider this option at that time.

Does Ava know?
We have decided not to tell her. We believe that fear is toxic and this information is a lot of burden for a 7 year old to bear. Instead we will carry it for her. We will cry, plead, and worry on her behalf. She can just go ahead and enjoy every day like any kid should.

How can we help?
Wow. We just want to say that we have been overwhelmed (in a good way) by the love. Seriously, we are BLOWN AWAY. We aren't sure what we need right now but, as we know, we will ask our good friend Patty to help coordinate. Thank you again for the prayers, calls, texts, tears, support, and love. We don't deserve it but God is good and he has shown his favor on us through you. One thing is for sure, we ask for prayers that Ava would be given a miracle and would live to give God all the glory. 

So, really, what will the next few months look like?
Well, we anticipate living life. We will let her go back to school. We will spend lots of time as a family. We might even go to Disney. We'll go to church, play, learn, laugh, cry, whine (I won't name names), and love. Most importantly, we will live each day out giving thanks early in the morning and late in the night.

"We will seek You first, Lord
You will hear our voices
Early in the morning and late in the night
We will sing Your praises
Giving You the glory
Offering our lives to You, a holy sacrifice
May our praise arise as incense
Oh Lord, to You
May our worship be a fragrance
Oh Lord, to You" - Shane and Shane

Visiting with their favorite cousin, Joseph, in Champaign, IL. 

Ava was a bride for Halloween. But we pray to see her radiantly walking down the aisle one day in real life.

Holy Moly, we are blessed. Mostly because our kids are so cute but also because I found red jeans with a short inseam.

Ava doing what she aspires most to be in life- a cashier. You can do WHATEVER your heart desires, girl!

Jude's hat is pink because we believe in recycling.

Ugh, I caved. I CAVED!!!!

I just can't even...

Red Robin, THANK YOU for understanding food allergies!

Fly, Ava.

Shutting down the playhouse for the winter and turning it back into a shed. 

A precious picture of my 3 loves at the Ohare Oasis...because that's a quality vacation spot. Don't knock it till you try it.

"Look at me, mama!" Always, Ava. I will always look and be amazed at what you have accomplished in your 7 years on earth.

"See my name tag, mommy?" Yes, Gwen, thank you for wearing that sticker. I want creepy strangers to know your name when you go fearlessly running off from me.

Ohare Oasis--we will pass this experience down from generation to generation.

Resting in daddy's arms after PET CT scan.

Must copy mama in everything.

They fight all day and then they sleep like an old married couple.


Saras said...

Thank you for sharing so honestly. Sending hugs via prayers. <3

Anonymous said...

So young, but so wise couple. Ava is so lucky to have you as her parents. Pray for your family.

Anonymous said...

In her seven years, Ava is wise beyond her years. Whatever she will have to endure will go unspoken. (I am sure she is not the whiner.) She sees your suffering even through you smiles.
I love the pictures.
"It takes life to live life!" and you are all living your lives

Anonymous said...

Thank God that you still hold on to the faith you has in Him. Continue to have in God, for He has perfect plan for you!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11


Love&Pray said...

Praise God to always give us hope, and we need more....Ava is a miracle!

Living Under Grace said...

Radiant and filled with life in the midst of uncertain certainty. Ava, you were made for a purpose beyond our understanding. The Lord is still at the helm. You are loved.

dress up files said...

thank you for write so beautifully and also love your sense of humor. red jeans with the right inseam is something to celebrate! ;)