Ezrah JOY's Fight

Ezrah has been having persistent headaches (daily) for awhile now. In speaking with Dr. Gilbert (Infectious Disease) that is not a known side effect of the medication. Therefore, we have 3 appointments this week: *Labs in Salmon Creek on 11/1 *Meeting with Orthopedics (Dr. Umberhandt) on Wednesday 11/2 (Virtual) *MEETING with Dr. Gilbert to go over labs on Thursday 11/3 @ Randall's  Prayer Requests: Ezrah's headaches Ezrah's FEARS/anxiety. She is really freaked out about pokes and prods right now, and is super worried about Tuesday.  *please continue to pray for her appetite*

We had a great check-in with Dr. Umberhandt today. (Orthopedic Surgeon) To summarize: we are in a "waiting and holding" pattern. Until we know more about how Ezrah's body is tolerating the medication, we simply hold the line. Or as Dr. Umberhandt says after EVERY visit, "Feed the baby. Love the Baby. Keep the baby alive. We'll do the rest."  We MAY have to do a 2nd surgery down the road to "bone wash." But, again....that's looking down the road. We have to wait and see how her body responds to the bone portion that has died and see what this medication does to that bone and the area of most concern. Ezzie's body will guide us. (But, we need her to find and USE her often SHY voice.) Dr. Bob believes this has moved out of an "aggressive phase."  The swelling she still has in her leg is normal. Her body is responding to the trauma of surgery. Yes, she still has a mass there, but if the medication does what it should, her body will au

Update 10/18 at 9am  Ezrah has been tolerating the medications well thus far. Although, the taste is awful and the schedule is a LOT since we are adding in Probiotics with hopes to protect her gut as well as we can. It's medications/probiotics alternating at 9am, 11am, 2pm, 4pm, 7pm and 9pm. We are starting to get a routine down and we are ALMOST one week in. (To clarify, we are doing antibiotics 3x/day and Probiotics in the interim, 2 hrs, after dosing for gut health. She is not getting continuous antibiotics 6x/day.) We will meet with Dr. Umberhandt (Orthopedic Specialist) this Thursday (10/20.) Tony and I have a list gathered of new questions...one being the possibility of Physical Therapy. Ezzie is still struggling to walk and I can't remember the last time I've seen her walk "normally," (ie without SOME kind of limp) It's not only difficult for her, but painful. (Understandably with a mass IN your leg/bone.) But, we have concerns about the long term effec

11:45 AM 10/12/22 I did get SOME questions answered this morning with Dr. Umberhandt, Ezrah's Orthopedic Doctor. (Since yesterday, we seem to have more.) We are not 100% out of the woods with cancer, but we're in a better place than we WERE. If this things grabs enough of the tissue...(untreated) it CAN take a turn. He believes our best bet is treating with the antibiotics right now and "see what happens." WE ARE TREATING. He just kept saying "this is so tough." It's NOT black and white. There ARE unknowns. These are our prayer requests: A) this thing responds to meds. B) Ezrah STAYS healthy.  C) these meds don't effect puberty or gut negatively.  D) Ezrah. She HATES these meds and her diet is TERRIBLE right now. We are just trying to get FOOD in her right now. She is TINY. We need her eating.  E) that this is not a lifelong battle for her. F) that her other bones/joints remain pain free. We have taken the funds donated to us and used them for the ti

  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 t

Our appointment with Dr. Umberhandt on Thursday (10/6) was a simple re-dress of Ezrah's surgical sight. Her incision is GNARLY. She's glad to have the covering changed.  *WE HAVE NO RESULTS YET FROM THE BIOPSY and are still waiting for the results from U of W and Mayo Clinic.* What this feels like- My (Becky's) Analogy: It feels like we are at a stand-still in the EYE of a hurricane. Everything is on pause. Will we be swept away in an upheaval, completely displaced or will we be spared? It feels like holding your breath.  It feels like you can't take a DEEP, cleansing breath when you actually CAN breathe.  It feels like you've hit the biggest DROP on a roller coaster and your stomach has taken up residence in your toes. Dramatic? Perhaps. But, that's how I feel. Ezrah is doing great. She has ZERO pain in ANY other bones/joints. THIS is HUGE. Her appetite is still not 100%. We'd love to see that improve! She has not needed ANY pain medicine for over 48 hours.

10:10am, 10/4/2022 I just got off the phone with Dr. Gilbert (infections specialist at Randall's) and basically....we are still in limbo. The biopsy samples that were sent up to the University of Washington have not yet grown the "bacteria" that would be indicative of an infection in the bones. It is not ruled OUT, but it has not yet produced the results to show otherwise. They want to wait a few more days to see how the samples react. The pathology report (to rule out OR confirm) malignancy has been sent off to The Mayo Clinic. He's direct words: "Do not read into that. We send about half the samples to The Mayo Clinic." I don't know. I'd feel more "peace" if he had said they send 100% of their samples there.  How is Ezrah? She's doing amazing. She is down to one dose of pain medicine (at night.) She's the bravest, strongest kid I know. We are trying to do "normal," while doing our best to keep her healthy and NOT exposed