Friday, December 11, 2015

Tentative Plans

We want to thank you, each of you, for the conversations you have had with God for our family during a time when it has been hard to stand up under our circumstances. It makes sense that we flit in and out of sleep praying for our girl but to hear that you are also laboring with us in love through prayer, well, that just gives us supernatural strength to endure.

We wanted to share some tentative plans so that you might know how to pray more specifically. First of all, Ava looks great and is in good spirits. Thank you for praying for her to get over this recent illness. Her eye is looking much better and she has been fever free since yesterday. The bumps under her chin could be cold sores so we PRAY that's the case. 

Dependent on how quickly she gets discharged from the hospital we are considering heading back to Chicago to regroup and to assess our options. More importantly, we want that time as a family. Ava's uncles, aunties, and grandparents will all be gathered under one roof to spend our Christmas together. Ava loves her family so much so this will be a magical time for her if we can pull it off. However, we haven't made a definitive decision because it would delay her treatment for several weeks...which won't be the best. We are still weighing our options.

When we talked to the oncologist here, we found out that Ava's leukemia expresses the CD33 gene. There is a drug called Mylotarg that can target this gene specifically which means it wouldn't harm the rest of her healthy cells. Unfortunately, this drug is given for compassionate use only at this time. We pray that they would approve this drug for Ava. Please pray specifically for this.

Her first step is to get into remission. She has never reached MRD negative in the past just with chemo but we are hoping that with the introduction of a new chemo drug like Mylotarg, that Ava might have a chance. Then, we would need to go to second transplant. We are considering a second cord blood transplant or a haploidentical transplant. Please pray for wisdom as the doctors decide which one would work better for her. 

We were given some tough news over the past week but our hope has been renewed by God's undeniable presence and by all the prayers from the Body of Christ. There was a time for mourning and now is the time to get up, brush ourselves off, and get back in the fight. Thank you for standing with us.


Laurie Hartwig said...

I have no idea what is involved with atransplant but if you explain to me what needs

Not really sure whats involved or what I need to do, but would be more than willing to be tested for a match for Ava.I live in Memphis, TN, not far from St Jude Research hospital. My email is I know it may be a while before you decide on your best course of action, so please contact me should you need to start looking at donors

Anonymous said...

I saw you and Mike Picked up the wisest option for Ava in every step in the past two years. Pray for you keep having strength to do the right things and pray for God's mercy on Ava.

Anonymous said...

I'm sure you've had many thoughts and prayers sent your way. I apologize if this is not helpful information, and I don't know much about cancer, but I heard one of the best doctors for viral oncology in treating cancer is Dr. Carl June:

Anonymous said...

You're testimony is both heartwrenching yet forward looking to the hope of our future glory in Heaven! I was very moved and I hope you don't mind, I preached to my youth group regarding Ava's struggle and your brave blogs describing your wrestles and conversations with the Lord.
We prayed for your family, and especially Ava for emotional and spiritual comfort more than anything, and we hope you are comforted by the waves and waves of prayers coming your way!