Friday, March 7, 2014

Fighting on (Chemo Day 5)

Hello everyone,

Esther here. Thank you so much to all our friends and family that have been carrying us through the past few days. It's been hard to get in an update as I am usually very drained by the end of the day. But today, I wanted to share some thoughts that I had as well as updates on Ava.

Ava is doing much better today. Ever since her spinal taps on Monday, Ava was in a lot of pain and in an overall depressed mode. She wouldn't eat, wouldn't smile, and spent the majority of the days sleeping. Today, however, the pain team came through again to reassess her pain. They wanted to make sure that there was no nerve damage. The great news is, it looks like most of Ava's pain is localized to the places where she was poked. She is now wearing a medicated patch that seems to lesson her pain. She will also be seen by a physical therapist that will motivate her to get up and moving. More importantly, I pray that she continues to fight against all the pain and the sadness. I believe in her because she has always been a fighter. 

Her WBC continue to go down each day and today we are at 6,000. This is great news and we celebrate each step forward. At the same time, her platelets have gone down a bit and her skin looks a little darker. There was also blood in her urine so I am waiting to see what that means.

Today, we spoke with Ava's allergist who also knows some of the oncologists on Ava's team. This is a great blessing because even though he doesn't work at Lurie's, he has connections that make it easier for him to share his insights. The doctors have been contemplating Ava's allergy history and wondering if there is some connection to her high IGE levels and her Leukemia diagnosis. Ava has always had very elevated levels of IGE and they have been increasing over the years. Her latest levels were 22,000. To put it in perspective, an average person has an IGE level of about 100. If these things are related, Gwen may also be predisposed to this type of disease. Of course, predisposition does NOT mean that it will happen. We pray against any and all chances for Gwen to receive a similar diagnosis down the road. Again, there is not enough data out there to make definitive decisions off of these observations but it makes us wonder about God's plan for Ava. You see, we have been praying for Ava's complete healing of allergies for some time now. There have been studies that have shown that kids who have had food allergies were completely cured after getting a bone marrow transplant. Now isn't that something? God ALWAYS works in mysterious ways and maybe this is an answered prayer. I pray with all my heart that God, in his infinite wisdom has brought us down this road in order to bless us with something even greater. Even if it doesn't mean Ava's health will be restored, we stand by in faith to watch the great things he will do through her life.

Please pray that:
1) Ava would go into remission after this first round of chemo. We pray in faith that Ava would beat this aggressive cancer and give God the full glory through her story. Mike reminded me that if Ava could fall into the 3-5% of kids that would have this rare type of cancer, perhaps she would fall into the 30-40% of kids that will beat this. God's arm is not too short to save.

2) We pray that no bone marrow transplant would be needed but, if so, Gwen would stand at the ready as a PERFECT MATCH to Ava and that Ava's body would accept Gwen's marrow seamlessly. Since they are already best friends, how much more would they be bonded through this transaction? They love the movie Frozen and the part where the sisters' love for each other beats out evil is my favorite Disney scene. I believe that love can save the day. After all, Jesus is love and we are saved through his love.

3) We pray that our faith would intensify and grow during this trial, EVEN If God chooses to take Ava home early. We remember that she is a gift, and he is the gift giver. She was entrusted in our care but she was never ours to keep. We trust in his word and his promises. It is not in his character to be cruel and unkind. We cling to these truths during this time.

4) That God would bless all those that have kept vigil beside us through this entire hellish experience. The phone calls, texts, emails, messages, financial donations, gifts, cards, visits, thoughtfulness and so on have made a deep impression on us and we cannot begin to express our thankfulness.

5) If we are going to pray big things anyway, I'd like to throw this into the mix. What if this is a misdiagnosis? What if she has an immunodeficiency that presents like Leukemia? What if this immunodeficiency can be safely monitored with medicine instead of drastic things like chemo and transplants? Just saying. This is probably crazy talk but nothing is impossible with God.

We thank God that:

1) Lurie's is filled with people who know Ava personally and love her wholeheartedly. My cousin Sofi works as a nurse only 4 floors up from the oncology unit. She has been a source of great joy to Ava especially when she is feeling down. Auntie Sue works as a nurse practitioner and was on the pain team that visited Ava today. Not only is she a familiar face to Ava but she is such a comfort to me during this time. We also saw Annie (Ella Joy's mom) who is going through a similar trial with her daughter. She took the time to pray with us and give Mike and I time to go on a mini-date--something that has not taken place in a while.

2) Every need that we have had has been filled without us even asking. There is a team of friends and family that have been working around the clock to make sure that we don't have to worry about anything except caring for Ava. This has taken a huge weight off of our shoulders and we are indebted to everyone for their love and support. We know some families walk this journey alone so we are that much more thankful for you.

3) For all of the babysitters that have taken a turn at watching Gwen. This is NOT an easy task as she is quite a feisty girl. Thank you for loving her and giving her the attention that she is not getting from us right now.

3) We are thankful that people are being brought to their knees in prayer and drawing nearer to God. Throughout this ordeal, I cried out to God telling him that I wasn't Abraham and I wasn't God. I did NOT have what it took to sacrifice my own child so that others would draw closer to God. But He chose us anyway. And so we bear the burden because it says in His word that He does not give us more than we can handle AND that He never leaves our side. If Ava's story has brought you closer to God, had you renew your Faith, realign your priorities, or reassess your life's course, praise God for his sovereign plan. Please hug your children a little tighter tonight, put down your work and invest in someone's life, and recommit your lives for his glory. I know I will be doing the same.

Thank you again for praying with me and for loving my baby, Ava. We continue to pray for complete healing and for something beautiful to be produced through this incredibly difficult time.


Darren said...

Blessed by reading this. God is still good even when we don't understand... Keep fighting Ava. We're praying for all of you.

Jenny Lin Gao said...

Esther, thanks for writing such a detailed updates! Please also take some time for yourself...I know it I know it, it's hard...just give a try. For the blood in the urine, I hope it is just occult amount detected...hope before it can go away by itself. I am not an oncologist, but I am a biochemist, I thought about the chances of the laterred allergy situation, potentially, after the treatment of marrow transplant or even the chemo. so you are right in sensing the miracle ways God work on us...

always, all of you will be in our praying!

David said...

Esther, I must have met you in church. From your writing we are proud of that you are a strong Mom, Ava needs you stay strong. It's Ava's battle, and it's also parents' battle. The doctors and nurses do the treatment one day each cycle, the parents take care of kids the rest of cycle, the kids fight the battle every seconds till they beat the Leukemia. David and we came from that path and knew it's tough. But the Lord love us and that is a way the Lord teaches us something the meaning of life, and love. Please forget about those statistics of survival rate, to each individual kid, it's 100% or 0%. We the parents do the best to support Ava, 1) try to motivate Ava drink and eat, tell her she need enough energy to fight the invisible "blast monster", Ava is a brave trooper and blast fight hero. 2) keep Ava stay in high mood, activity, jokes, movies, games, and spoil her as much as you can! 3) keep Ava away from any infection sources, infections could weaken kid and cause unnecessary complication. 4) trust Ava treatment team, but stay alert on dosage and chemo. You might not want the same person who did lump puncture that time does the lump puncture for Ava.

David's Daddy

apark said...

hey esther,
we will continue to pray for ava and her treatments. so glad to hear that her back pain has lessened and she is getting the care she needs at Lurie's. i've deactivated my fb account for the time being, so i will continue to check back on the blog for any updates. keep fighting and persevering! we will continue to be your prayer warriors! :)

willlynilly said...

mike and esther,
i'm saddened to hear what you guys are going through.
i am humbled by your faith, and hope that you can hold on to 1 peter 1:3-9.
i pray that ava will not be in pain and will be strengthened to continue to fight the aml, and endure the chemotherapy.
i know your battle is a long one ahead of you. I pray for the courage to always hope in God.
-matt rhee

Heather Rocen said...

I know you are tired at the end of the day and want to just sleep but thank you for taking the time to update us. You are all on my mind and prayers all day long.