Monday, March 3, 2014

Chemo Day 2 - Update from Esther

How do you begin to write about something so unnatural and so sad? Every day is a fight to stay positive especially as Ava looks to us for strength and peace.  We are strangely in a place of peace ourselves knowing that our heavenly Father lovingly holds us in his hands even through the darkest times. 

We’ve died a thousand deaths in the last few days but each time we get up, wipe our eyes and move forward with as much hope and faith we can muster up for the day. We want to thank you for being our hands and our feet and helping us to function when we don’t want to eat or drink and when we reject the good things all around us. Thank you for being the reminder that laughter is allowed and that we need to be healthy in order to take care of Ava.  Even though I cannot reply to everyone’s texts, emails, cards, and other life giving encouragement, please know that we are storing up everyone’s words in our hearts.

Today, Ava had her second round of AML chemotherapy. Her WBC (white blood counts) are going down which means WE WON for today. The thing we are looking out for is Ava’s bone marrow to begin producing healthy cells once these bad cells are eradicated through the chemotherapy. That is why this first month is so extremely important.  At the end of the month, we will see how well her body has responded to the treatment. We humbly ask that you not forget to pray for Ava even as the days turn to weeks and the freshness of her diagnosis begins to fade. We realize we cannot fight alone and sometimes we are too scared or too sad to even put up a fight.

We are seeing the effects of all the toxic chemicals Ava is consuming through chemo. She is on 3 aggressive medicines and takes a plethora of other drugs to keep pain and other infections at bay.  At this time, she is on morphine to help with the pain from her spinal tap. The spinal tap will help determine if there are any leukemia cells in her brain and spinal fluid. We pray against ANY leukemia in those parts of her body.  We will know this information by tomorrow. We will also find out if her WBC have lowered even more. The goal is to get to zero white blood cells so that her bone marrow can begin making healthy cells again.

Ava is beginning to realize that the chemotherapy will have negative side effects. The one that concerns her most is losing all of her hair. We are talking about ways to ease into this transition but she is not really there yet. She cries about going bald and says that she will be ashamed.  We have talked with her about how beauty radiates from the inside and how absolutely radiant she is because of her kindness, gentleness, love, patience, goodness, etc. Please pray that she learns the important lesson that beauty comes from the core and not from superficial things such as hair.

Today, after the spinal tap, Ava was in so much pain and said, “Mama, please help me feel better.” There may not be a more devastating thing to hear from your child especially when you are powerless to do anything for her in that moment.  Things are so completely out of my control that I can’t help but to ask God for every single need during these hours. And he is faithful to answer.

We also pray that Gwen would be a PERFECT MATCH with Ava’s bone marrow. This way, if we need to do a transplant, Ava’s chances will be higher.  When I told Ava that Gwen would need to get a shot to help her, she again cried and said, “Why does she need to get a shot? I don’t want her to. She’s not the one that’s sick; I am. She’s just a baby.” Ava doesn’t realize how dire her situation is but, even if she did, I believe she would stay true to her character in wanting to protect her “baby”.

We spent tonight holding her and talking late into the night about specific memories that may have been hurtful to her in life (like getting mad when she didn’t go to sleep, etc.) and then we talked about all the really funny, beautiful, and touching moments in her life that were special to us.  We laughed and cried and spent time covering her with love and life.  It was so good for us and for her. Thank you, God, for the precious reminder that life needs to be celebrated and enjoyed and that you deserve all the praise for every good thing.  Even if the reminder comes at such a heavy price, we thank you, Father, for you know what you are doing.

Thank you for your prayers. We covet them and, selfishly, ask for more and more and more.


jaemom said...

No one writes like you, Esther. Thank you for sharing your heart. We stand with you in faith, kneel and cry out with you in intercession, and grieve with you in spirit. Your family is continually in our prayers.

Heather Rocen said...

I admire your strength and courage. I will always pray for Ava...I will never forget to pray for her.

moto3mama said...

Thank you for sharing your thoughts so honestly. Your moments with Ava talking about hurtful and happy times brought tears to my eyes. Admiring your strength, genuineness and faith. The prayers continue.

Simon Vasey said...

I am amazed at the strength your family and friends are demonstrating through this blog. I really don't know what to say, but I wanted to post something to show that I was thinking about you all. I know your family's love and faith will be a major part in Ava's healing. I'll be keeping you all in my thoughts, and look forward to reading about how you are all beating this thing. x

Nicole Padron said...

So much strength and resilience is exuded through your words, Esther. I cannot image how you do it. Thinking about you and Ava every second of the day. Hoping and praying for a complete healing of body and soul.

Anonymous said...

praying for you guys as well and hoping that Ava feels better soon.

"Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.” - Deut 31:6

Debbie Bond said...

Esther, Heavenly Father hears and answers prayers. Not always in the time that we want them answered, but he does answer them. My family and I will pray for a full recovery and more importantly we will pray you and your husband will have the strength you need to get through this trail. Debbie Bond

ces said...

Dear Esther and Mike and family, Con told me the sad news yesterday. My heart grieves for you and I just wanted you to know that you are being lifted up in prayer from Ohio too. Praying for miraculous healing, praying for comfort, strength, grace, and hope for each day as it comes. Most of all, praying that Ava, Gwen, and all can strongly sense Him holding you in His loving arms, even in the midst of this storm.

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Ps. 34:18

Christine Adler said...

Esther, you and your family have not left my thoughts or prayers since learning of Ava's diagnosis. I happened upon this saying and immediately thought of you...You are stronger than you know, you are braver than you think, and more loved than you can imagine. Keep those words close. God has a plan, He just hasn't revealed it to us yet. ♡Christy

beksnum2 said...

Dear Esther and Mike,
May God continue to supply you with courage and strength through it all. Ava is such a sweet girl, and she's so brave. I will continue to pray for your family, and for Ava to be healed. Many prayers are being lifted for your family from NY.
Becky Chen

Judy Chen said...

Dear Esther and Mike, just found out about Ava and am so broken-hearted for you over Ava's condition. I remember when my dad had cancer 7 years ago... and it's so difficult. Asking God for mercy and complete healing, ideal results for each blood draw and that Gwen would be a perfect match, etc, excellent skill/treatment on the part of medical professional, strength, encouragement, comfort and peace for you. Ava sounds like a loving and wonderful big sister... what a blessing. I've told my family and some mutual friends about this so they can pray for Ava and for you. May the Lord be with you and hold you in the palm of his hand. You are often on my mind. Love, Judy (very old EFC Naperville friend)