Monday, March 3, 2014

Mar 1 update from Esther

(from Esther's FB page):

Thank you so much for your thoughts, prayers, emails, and calls during this time. Now that we know more definitively what is going on with Ava we can give a better update on her.

The last few days have been the most difficult of our lives. We received the heartbreaking news that Ava has Leukemia and, out of the two kinds, she has the one that only has a 50% survival rate. We are heartbroken beyond words and need all kinds of prayers for a miracle for our sweet Ava. Ava has transferred care to Lurie's and will begin Chemotherapy today.

With her immune system being completely wiped out through her disease and then again through Chemo, unfortunately we will not be able to take visitors for the time being in an attempt to keep her infection-free. When the risk is minimized, we will let you know.

I will most likely begin writing in my blog to share the whole story when I am ready but at this time, if you could please keep her at the forefront of your prayers that:

1) The diagnosis with the rest of the labs would come back favorable. With this type of Leukemia, the less risk factors you have, the better the outcome. We are praying against any chromosomal abnormalities and that she responds EXCELLENTLY to the first round of chemotherapy.

2) That Ava would NOT need a bone marrow transplant due to her great response to Chemo. Most kids that have AML receive a bone marrow transplant and if she does need one that her body would take it well and that Gwen would be a bone marrow match. Siblings are the best bet for a match and there is 1 in 4 chance that Gwen could match with Ava. We pray for that specific miracle.

3) We have not seen Gwen for a full day since the diagnosis on Wednesday. She is scared and confused so we pray for an extra dose of love and peace for her as there will be many days ahead where her routine will be different from normal. Also, Ava and Gwen are best friends and it will be difficult for them to be apart for so many days especially since Ava draws so much strength from Gwen's company. Please pray that they will be able to wait patiently through this time.

4) Our family is taking the news very hard and are lost at the thought of Ava being this sick. Please pray for peace as those who love her learn to accept and deal with this diagnosis.

5) Ava is fighting two infections. Since her immune system is completely depleted with this disease, she is having difficulty fighting off a staph infection that she has. She has been spiking high fevers for 10 days now and needs this infection to clear.

6) Mike and I have put our lives on pause for the moment, so please pray that my classroom kids can continue on normally without me for the time being and that our church could band together during this difficult time. We have received SO much support both from my school family andour church family. We pray for continued strength for everyone that is carrying our burdens with us right now.

7) Ava knows about her disease and is trying to be brave. Her comment to me after seeing me cry was, "I'm sick. So what? Let's forget about it." She shows bravery beyond her years. We need to stay strong for her but even in the moments of sadness, her compassion and empathy for others is beautiful. It will get harder as the treatments progress, so please pray that Ava would be strong and not be scared.

8) It looks like our insurance is covering the majority of our stay as in-network. This is the difference between thousands of dollars. Please pray that, indeed, insurance will cover the top notch medical care that Ava is receiving at Lurie's.

Please join us with thanking God for all the wonderful blessings He's granted us even in the midst of this:

1) This was discovered by accident. We were in the hospital for a Staph infection and through her high blood count, the doctors acted quickly to find the Leukemia.

2) Ava is in GREAT spirits. She sings, plays, and tell us amazing things every day.

3) Through this time, I've stopped to reassess my priorities and am making up much lost time with Ava by playing and staying close 24 hours. She's thrilled that mommy and daddy have both been stuck to her side for the past 3 days.

4) We made the tough choice of leaving Lutheran General where Ava is known and loved, to come to Lurie's. But we are confident that she will receive great care here so we are so thankful that this was orchestrated seamlessly.

5) We have friends that are beyond amazing and our support system is incredible. We have so many people praying for us and crying with us. The burden is so much lighter with you there. So thank you for everything from the bottom of our hearts.

I know this is a lot of information. We are processing it as we go but are confident that God doesn't make mistakes. Although this news is incredibly shocking, we are comforted that nothing surprises God. In fact, he has all things under control and in his hands. We know this does not automatically mean everything will be okay. But we trust that God has a perfect plan that does not include pain just for pain's sake. We continue to trust in him especially when the waters are murky and when we feel nothing makes sense. Finally, we pray for a miracle and that Ava is in the 50% of kids that are COMPLETELY CURED of this cancer.

Thank you again for your friendship and your support throughout her life and all of her struggles. We are very blessed. I will update more as we know.

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