Updated Results...NO CANCER

 

12:10pm 10/11/22

Dr. Gilbert called (Pediatric Infectious Disease Specialist)

The doctors do NOT believe we are dealing with malignant cancer. PRAISE!

Ezrah's labs STILL have not grown the way they would if we ARE dealing with an infection in the bones. However, apparently that is the case approximately 60-70% of the time (no bacterica growth.) The doctors are leaning towards "Infectious Ostheomyelitis" despite this, and treatment includes 12 weeks of antibiotics, 3x/day. If during these next 12 weeks we do not see improvement, doctors will look into it being "Acute Chronic Recurrent Multi-Focal Osteomyelitis" caused by an auto-immune disease. (That will be when we RECON as a team.)

*TIME will tell if we are dealing with chronic vs. infectious.* Ezrah HAS had past inflammation in here eye. (I will publish a note I wrote in a few days Titled: "How Did This Start," since many of you have asked.) Basically, she is not a stranger to inflammation in her tiny body. 

The hope is that these heavy-hitter antibiotics will repair the "dead" portion (of bone) and the tumor will become like a "scar/cut."

Ezrah will be monitored weekly with infectious disease and rheumatology at Randall's, including labs to check various levels to see if she's tolerating the antibiotics ok. OBVIOUSLY there are side effects for these antibiotics, however they do NOT include the HORRIBLY scary side effects if this had gone the other way. Praise!

What's next? We begin antibiotics immediately. Ezrah is still mostly disabled. (Unable to walk, stand, bathe on her own, or get around comfortably.) She DID have part of her bone removed, but, also, the pain she has in her legs was quite painful PRIOR to surgery. This has not changed.

We will meet up with Dr. Gilbert next week to possibly do labs or a "verbal check" to see how Ezzie is tolerating the medication. 

We follow-up again on the 20th with Dr. Umberhandt (Orthopedic Specialist.) We love him. (Did you know he sat in a room with me, alone, after discussing the initial findings 9/22 and let me cry for over 45 minutes and THEN explained EVERYTHING again as soon as Tony showed up? He never rushed me, and he ALWAYS asks what other questions we have. Always.) When he's called our home, he's asked to speak to Ezzie. He's an incredible human.

Dr. Gilbert did say it will take 12 months to fully know if are making progress on this beast. ..or maybe that's if it was "acute"...I can't remember. I just remember hearing "12 months."

Although we can breathe a LITTLE bit easier...this certainly isn't over for us. For me, I've held my breath for so long, it's so very hard to understand all the "words" the doctors are using. And yes, we have been told multiple things...so, I guess time will tell how/where this goes. We obviously HOPE and pray for 100% healing and restoration. I had to make the decision today if we want to try and treat this AS IT IS an infection...and then reassess. Gah, um, I guess so!? 

Do YOU have more questions? So do I. LOTS. SOOO MANY. But, I can't keep playing the "what-ifs" in my head. I've lost too much sleep. I am so very tired. Answers will come. THIS I know.

When I told Ezrah that the doctors do not belive its cancer, she smiled and said, "I don't really know what "cancer" is...I just don't want to have surgery again." Like we've said, she and the little girls know the VERY "G rated" version of ANY of this. And...if we have to cross another "surgery-bridge," we'll do that when we get there. Ezzie looks a little lighter too, like maybe she just caught a deep breath also. Children are incredible. SHE is incredible!

Tony says sometimes my blog updates get a bit "wordy." But, this is as much for ME, as you. Writing is cathartic and it helps me track the timeline...as well as process the millions of words spinning around in my mind. 

We are grateful for YOU. For those reading my updates, the countless cards, gifts, donations, meals. Our entire family has seen what it means to be served by the hands and feet of Jesus. It's indescribable. Please continue praying, if you feel led. And, thank you. Thank YOU for seeing us. For SEEING my brave, brave, girl and for holding up her (at times) crumbling mama.

https://youtu.be/xrAdbH28gIg

This song has been on repeat as Ezrah's anthem...I can think of no other bones more ALIVE and DRY than hers. I suggest you give it a listen, with headphones. Loudly. It's called "RATTLE" by Elevation.

"My God is able to save and DELIVER and HEAL 

And RESTORE anything that He wants to

Just ask the man who was thrown

On the bones of Elisha

If there's anything that He can't do

Just ask the stone that was rolled

At the tomb in the garden

What happens when God says to MOVE (you gotta move)

This is the sound

This is the sound of DRY BONES rattling

This is the praise, make a DEAD MAN WALK AGAIN 

Open the grave, I'm coming out

I'm gonna live, gonna live again.