Ezrah JOY's Fight

               (The anxiety cocktail in FULL effect) What. a. day. Ezrah is such a trooper! I have three initial thoughts.  1. Modern medicine is amazingly hilarious, entertaining, and miraculous. 2. Seeing blood on/near/oozing out of my child will NEVER not make me want to barf my guts out. I STILL have a pit in stomach. Indefinitely. 3. Pediatric specialists have wings. Of this I am convinced. They are ANGELS. Sent from the Lord. Dr. Horikawa was able to do the ablation, but NOT the biopsy. Ezrah has had a recent string of events that have him searching "broader" about what is going on. Good ol' "rheumatology" and "auto-immune" were mentioned ONCE again. (If I had a nickle)  But, he is hopeful this ablation will resolve her pain IF this is a classic osteoma. Time will tell. And we meet once again, with Rheumatology, with her new symptoms in September. A repeat CT in six months through IR to follow today's surgery/progress. The biopsy d...

Hi Friends! I know it's been a minute, but I just wanted to send a quick update as we have some BIG news this week. Unfortunately, Ezrah will undergo another surgery THIS Thursday morning at Randall's Children's Hospital in Portland on her leg. We've been told to expect about 5.5 hours. (You know how much I LOVE "time estimates.") Her pain has returned, and the plan is to attempt a cryto ablation as well as biopsy the "mass" that they still see present in her tibia. We are hopeful that this will be her final surgery and bring her some MUCH needed pain relief. Our hope is that recovery will be swift. If you've followed our adventures, specifically Ezrah's journey, you'd know these things are so so so hard for her and bring paralyzing anxiety. We sure would covet prayers this week and beyond, during her recovery.  As for Tony...he is stable and doing well considering all things. He will have a follow-up with Hematology in December, and a re...

(The face of a man who no longer has a tube stuck in his back.) *UPDATES* 6/13/23 12:30PM It's a BIG week over here....HUGE. YUGE. TONY IS FREEEEE! He met with IR today at OHSU and Dr. Kim removed the drain. Now listen here, right now; Nurse Nelson is STRONGLY considering going back to school for nursing, ya know, to make it "OFFICIAL." Friends, ZERO doubt that I could've removed that drain and loved every single minute of it. Dr. Kim? I'm pretty sure she would've let me assist. Especially since I was about 3 inches from the site "helping." She. Is. AWESOME. Tony really does have an AMAZING, thorough team on this case. And he feels FREEEE. A new man has emerged.  (Suggestions on nursing schools OR phlebotomy programs can be sent to MOI. I'm entertaining both. Clearly, I like blood and needles, but math? Not so much.) Tony also went back to work yesterday. He's starting back SLOOOWWWLLLYYYY. Starting with 4 hour days and nothing SUPER physical...

 *UPDATES* 6/7 5pm  BIG Day today! Slight set back. (We expect these now, so it's less of a shock/disappointment.) Tony had an early morning CT scan followed by a small surgery/procedure to have the drain removed. But... the IR team just wasn't comfortable taking it out quite yet once they got him back in the OR. They took some pictures, and everything got canceled/put on hold. (Cue the parental Charlie Brown voice.) Wah..wah..waaa So, we have to wait another week and then come back for the removal. I'll spare the details. They have their reasons, but essentially pulling it out today COULD have put a "high risk" of starting the drain process ALL over again. We do NOT want that. We will wait. Impatiently at best. This means Tony will have to go back to work next week (first day back is June 12th) with the drain still in place. (He's bummed). It's like a literal chain that holds him back... or rather slows him down. As you can see from the photo, he refuses ...

 *UPDATES* 5/30 6PM Tony's recovery is going swimmingly well. We have LOTS of follow-up appointments coming, including another CT scan on 6/7 where doctors will assess removing the drain he still has in place. (If the CT is favorable, he will undergo a small surgery for removal directly after that appointment.) We need that scan to be crystal clear and not alerting to ANYTHING new that may require yet another surgery.  Nurse Nelson is still tending to drain flushes and trying to reign in the "work-horse" that is my husband who thought staining the deck would be a good "endurance excercise". He got "permission" to hit some tennis balls, and so he has been working on that and regaining strength. (He's asked me to "hit" with him, but I've officially quit tennis... for the 479th time. I'm serious this time.) Each day is an improvement for him. His goal is to ease back into work at the tennis center, starting on the 12th of JUNE, and d...

 *UPDATES* 5/24 3:30PM I think this last round may take a minute or two to bounce back from. Two surgeries totaling nearly 12 years on the operating room table, and another 5 days in the hospital took its toll. He's tired. He's sore. His head feels funny. He has ZERO appetite.  He's up quite a bit at night. He wants the drain out. I had a dear friend remind me that having all the drugs and anesthesia pump through his veins in such a short amount of time IS going to take time to get OUT of his system. We had JUST felt like he was making quick progress. We felt the upswing SURGE last week. Then, BAM. I know he will still return to work in mid-June. I know he will push as much as he can. I know he will test his limits...and mine. I know he will fight like hell. For now, it's time at home, with the kids. We will take it day by day. Together. 

*UPDATES* 5/23 1:45pm Guess who's HOME? My beloved. I broke him out of the sterile B&B and his suite in the underground today. He's not feeling as well as when he went IN on Friday. (2 surgeries and 5 days in a room in a basement will do that to you.) But, it's simply a slip. I'll get him back fighting in no time. #TEAMNELSON WE FIGHT. (Just after we nap.)