Team Ezra- Continuing Support for Ezra's Journey

Always check www.facebook.com/goteamezra or www.instagram.com/mother2kings for updates!

venmo- @TeamEzra

Ezra is now on the cusp of his 10th brain surgery after numerous chemotherapy attempts. We are praying and believing this is the surgery Ezra will need to finally remove all of his tumor.

On Sunday afternoon after church I received a phone call that I was not expecting.

I had mailed Ezra's last MRI disc from Duke to the surgeon we spoke with last year (he is widely considered the best in the US and he specializes in complicated tumor removals) but unfortunately, the last I had heard, they could not locate the disc in their mailroom. Imagine my surprise when I saw "Dr. Paul Klimo" on my caller ID at 1:27 PM on a Sunday.

He asked me to tell him how Ezra is doing now (he did text me a few times throughout the year to check in-- he is the kindest!) and once I finished and gave a pause he said...

"I don't know Ramona, I feel in my gut that I can get all of it out now, I think it's time."

This is it, this is the miracle! This is exactly what I have prayed for throughout this last year-- that this chemo would pull the tumor out of the inoperable places and that Dr. Klimo would be able to remove it! This time last year he said he could remove about 50%. I cannot put it into words enough how good God is and how he led us each step of the way to this. Please do not miss that only the Lord Almighty did this. It could not have happened otherwise.

Ezra's story has gone from inoperable and a dead-end story last January, to operable and FULL of hope for a complete healing this Spring. I will never get over it. Ever. From hospice care to HOPE.

Amie overheard my side of the conversation (Travis and I were crying and you all know that I am not a crier) and she was overcome with emotion. She said, "I am crying because my little brother could become cancer-free!" Bless her sweet heart it has been 6 very long years.

Listen, there are many risks. Many. Things my heart is pondering that won't let me sleep. We haven't even discussed them all yet but we are looking at a likelihood that he will lose function to the right side of his body again and will have to work to gain it back again. More vision loss, damage to facial nerves/swallowing, etc. and significant stroke are always on the table. So much unknown. But we believe that this is the miracle that we have asked God for and that He is going to care for and protect our Ezra. Please Lord use the surgeon's hands and shield our boy from any damage. Give him hope and a future.

We believe that it is time. God's perfect timing. We were supposed to stop the chemo in May (what everyone has said is our "last" option) and scan every six weeks expecting the tumor to grow and expecting to go right back on the chemo indefinitely for what amount of time we can.

What if we get rid of this tumor once and for all? Come on with it! Let's go! While there will always be a chance for recurrence, especially if even one cell is left behind, the widely accepted opinion in the medical world is that full surgical removal leads to the best long-term cure and prognosis. WE PRAY THAT EVERY CELL BE GONE IN JESUS' NAME!

As it stands, the plan is for us to travel to Memphis on Easter Sunday (the timing significance is not lost on me). We will see the surgeon on Monday and we will be admitted to the hospital on Tuesday for a full MRI in which they will map Ezra's brain on a cutting-edge technology grid system. Wednesday, April 3rd, will be surgery day at Le Bonheur Children’s Hospital. We expect it to be a very long surgery, perhaps over 10-11 hours and they might even have to do more than one surgery depending. Ezra will be in the ICU after and we are very unsure what his recovery will look like.

Ezra's 9th brain surgery and the 3rd tumor resection attempt will be the one that heals him completely and changes the trajectory of his life, I am claiming it! After 6 years of continuous chemotherapy and experimental drugs that have hurt his body so much, he will need them no longer we pray! God showed me this path when the doctors told me no and He was faithful to it!

We have faith but we are scared, too. We are having a hard time sleeping but we do feel peace. There is so much to do. And we are going to need help. You all know I cannot stand to ask for help but we need help with gas, food, travel expenses, childcare, the yard, bills (my gosh I am holding my breath as they work with our insurance to get this going there is no telling what they are going to say our portion will be), our animals, etc. etc. Of course we are in the middle of a DIY renovation to try to get Amie her own room in our basement and she is sharing with Ezra now, so we need to finish this asap so he has his own bed when we get home, yikes. So many things to do. I think we are going to try to get an AirBNB in Memphis so the grandparents and girls can be close by for a couple days. We haven't told Ezra just yet but he is going to be bummed that we are doing brain surgery instead of camping for Spring Break. I dream of being able to take him somewhere fun for a couple days before we go --- when I asked him where somewhere fun he'd like to go is he said "Billy Bees, Catch Air, Universal and Magic Kindgom" Ha! I'm sure we can make the first two happen as they are local.

My mind is in a million different directions as this is set into motion but the hope that I feel that his life could be changed is keeping me going.

If you want to mail him or us something stay tuned, I will post the address tomorrow. We expect him to be bed-bound for a while so we are working on activities and such. Our venmo is @teamezra.

Listen, as much as we do need help, I don't want anyone to feel pressured because there is something you could do right this second that would mean so much more to me, please pray over Ezra's body as he takes this on. Please pray this tumor is removed -- every cell-- and that Ezra is on the path to full health.

The other morning Ezra asked me when he would die. I answered, "hopefully when you are a very old man." He said, "Good, because I want to be a Grumpy Grandpa!" Please Lord let him be a Grumpy Grandpa one day! What a dream!

We plan to have a hands-on prayer gathering for Ezra on Thurs March 28th in the evening -time and location TBD.

"You're the living, breathing God of glory

I'm a living, breathing testimony

You're the One who turns the dead end stories"

"You are more than able

Who am I to deny what the Lord can do?"

Thank you for loving us and loving our boy so so much. Let's see EZRA WIN!

I took these last night in our backyard. I can't wait to see his body off chemo and healthy again.

*I hate to add to this post, making it even longer and taking away from the overall message but I have had many ask and I wanted to answer— Yes, St Jude is in Memphis and the surgeon does work with them, not for them. St. Jude actually does not do neurosurgery and does not employ neurosurgeons— they use this team of neurosurgeons (Semmes Murphy) but they are not located at St Jude, just nearby. The surgery will be across the street at Le Bonheur Children’s Hospital. Because of this, we are not a St Jude patient and therefor we do not benefit from any of their financial assistance or amenities.

We are hoping that they might take on Ezra’s case after the surgery when Dr Klimo presents his case to them again but we have tried for 6 years to get in with them and they have always said no.

This surgery and subsequent hospital stay will be funded by our insurance should they approve and we will be responsible for at least 20% of the total cost per what they have already said. For reference, our first surgery in Atlanta in 2018 was $250,000 for the one surgery day not including his month long stay on the rehab floor after. We will probably also have to pay 10% upfront which we are prepared to get a loan for should we need to.

Thank you all for the love, we don’t ever want to seem sketchy. I hope that answered some questions!

*Also, Katie Beckett Medicaid does not pay for anything outside of the state of Georgia (the state where you reside— we having been dealing with this for the last year being treated at Duke).