Ezrah JOY's Fight

  Watching Ezrah try something NEW has been both fascinating and gut- wrenching. I've been full of pride and gutted in disappointment all in the same day. You see, Ezrah hasn't found her tribe yet on her new volleyball team. She is clearly the "newest" and the least experienced. (She only decided to try-out after a 3 day camp she attended in August, and fell in love with the sport. She was HONORED to make a team at the local high school.) She's hungry to learn. But, I believe that because of her ability, she hasn't quite been accepted. I've seen her be isolated in the group. She has been totally alone as the other girls form groups, lead cheers, and chat amongst themselves. I've seen girls make faces if they get partnered with her. I've witnessed her come out last and by herself from the locker room. She sits ALONE on the bus because, "there isn't room for her." She's always put at the end of the team bench.  We have PRAYED for ju...

Ezrah's six month check-up at Randall's Children's Hospital with Rheumatology. Her body has responded well to her medication, labs are looking great, and she's had ZERO signs of inflammation or infection. We are on the right path. However, she's not done growing! She grew another inch in 6 months. So, while she continues to grow RAPIDLY, we've elected to stay on the medication to keep her bones happy. To be noted: she's 14, wears a size 12 shoe, and is closely catching up to her mama in height. Alllllll my life, I've wanted to feel short. Things are finally happening for me.  

Tony's gallbladder has officially left his body! We are hopeful that this is the answer for ANY and all future pancreatitis flare-ups. And, God-willing, keeps us out of the most sterile B&B in Oregon, OHSU.  He's in quite a bit of pain, and keeping him "down" will be a full-time job for me, Nurse Nelson. Favorite question of the day that Tony asked his surgeon in pre-op: "What exactly do you mean by 'no twisting' after this? To which his surgeon replied: "I don't want you swinging rackets." Dr. Connelly and I are fast friends.  Tony's down for the count for 3 weeks, with a 10lb. weight lifting maximum. Jesus be nigh. This gone-be tough.       Pre-op SMILES. Before IV's and stabbing pain.

Well, village... we come to you today with another update/prayer request. After the ultrasound procedure that Tony had in March, it was discovered that he has some "sludge" in his gallbladder, which CAN be a precursor for another round of pancreatitis. (Apparently, sludge is not something most people have, and given "the perfect storm," it COULD land him back into a lengthy stay at OHSU, or God-forbid, worse.) Tony met with a surgeon on Tuesday, and it has been strongly advised that he has his gallbladder removed to eliminate that as a possibility. Surgery is set for June 10th at OHSU. If you know Tony, he is, of course, trying to wrangle anyway he can to get back to work for financial reasons in LESS than the three week sentencing. Although it will be a robotic surgery with four incisions, the down time is 3 weeks. Best case scenario. He also feels like he's FINALLY back to his fighting weight and FULLY recovered, so, to him, this feels like a MAJOR setback. Un...

             (Blurred photo to protect "the patient") Tony's procedure went really well. As always, we got an AWESOME team assigned to him. OHSU is amazing. BEST, KINDEST, HAPPIEST staff around. (Hey, they played 90's pop in the OR. THESE are my people. Backstreet's BACK alright!! I DID ask to go back with him as a back-up dancer. They smiled and nodded. Politely.) Apparently, all 3 stints had fallen out on their own. Dr. Yu said his pancreas looks remarkably well, all things considered. She said if she hadn't known of his lengthy stay here last year, she would NEVER HAVE BEEN ABLE TO TELL how bad it was. The portion of his pancreas that "died" or necrotized will not come back or repair on its own, but it appears to be functioning well. Not 100%. But, "well." She was pleased.  She did find some "sludge" in his gall bladder. We don't KNOW if that was the cause of pancrea-maggedon 2023. But, she is taking Tony's (Medical ...

It's been a minute. Isn't that just AWESOME?! I've been wanting to come on here and share the latest... We're coming up on the one year mark of Tony's initial hospital admission. March 28th, to be exact. Often, it feels like yesterday. But, sometimes, it feels like a lifetime ago. Because of that, doctors are choosing to do some recon and "check" on things. Tony will undergo an angiogram on March 20th at OHSU. The procedure is supposed to be 2-4 hours, and I'm sure you remember how well he does with those!? (Not well at all. They ALWAYS take longer, with a few hiccups in the past. We've lost count, but I think this will be the 5th one.) My guess is a CT will be around June/July to further check his pancreas. With the new year comes new out-of-pocket maxes and deductibles. But, we believe this is necessary for some peace of mind and to make sure staying off all medications is best. We are hopeful this will just be a quick in and out procedure. Would...

He's officially official. Please give a warm smack on "the bum" (or back, whichever) to our NEWEST U.S Citizen! The Nelson 8 witnessed a beautiful ceremony today at WSU. It really was a special event. Today is historic for The Nelson Legacy. (Thank you for understanding why we didn't invite others. If you know Tony, you know he's not one for attention. After this last year, I think he's "attentioned" out.) It was really just a day we wanted to celebrate with the kids. I am just thrilled that they all cleared their schedules today, and we "home-schooled" in US History, hard. (Naturalization Ceremony!? Doesn't get more American/historical than that!) A brief health update: Tony has a vascular ultrasound tomorrow at OHSU that we would really love covered in prayer. (It's at 1pm.) As many remember, the last ultrasound landed us back at OHSU for 5 days because of the newly discovered blood clots. Tony's been off blood thinners for a ...

 December Update - Kinda a big one.  Few people know, but Tony had another recent "flare-up" with his "sub-par," VERY damaged pancreas that began on Sunday and lasted two days. (Yes, he took his citizenship test in pain, cause you don't reschedule with the USCIS.) But, we aren't messing around, and so today (Wednesday) we found ourselves back at OHSU for a check-in. (Remind me to make a PowerPoint Ted Talk on TRAUMA/PTSD.)  We left OHSU with a better plan on how to manage these "flares" so that in the future, he doesn't have to miss MORE work time. (2 days off this week) And we left with future lab draws for some genetic testing. Jury says this is all still "idiopathic".... so, in a true episode of "House" fashion, we're still "guessing" on what to stay away from as far as nutrition. But, this was the VERY first time we'd heard about options should this ever become chronic and/or progressively worse. There ...

  November Update: Dare I type it....but life has been relatively boring on the medical front for Tony & Ezrah. Tony has been stable for several months, and we will meet with Hematology in December. He is still on the dockett for a repeat CT, and we will do another round of baseline labs to check how his pancreas is doing. One of the "concerns" has always been his insulin levels holding steady with a now compromised pancreas.  Ezrah had a follow-up with Rheumatology last week at Randall's. We have FINALLY found a prescription that keeps her pain at bay. THIS IS HUGE. Her doctors would like her on it for a year. She has to do a blood draw (pray for our girl) next month to make sure her liver and kidney are tolerating it well. She has NO signs of arthritis and she no longer limps. This time last year was such a scary time. We just didn't know what we were dealing with, and she was in and out of a wheelchair having one surgery behind her. What a kid. Her resiliency i...

 A lil' October update.  *Tony is stable. We meet with Hematology in December.  *Ezrah is stable. She's on a new prescription that seems to help with her nighttime pain. She has gone 5 nights (by her own choosing) WITHOUT medication, and the pain has not returned. She will have a repeat CT scan in the coming months to see if the "spot" in her bone has been reduced. We meet again with Rheumatology next month. *Micah. For those who saw my IG post. His dominant hand had a run-in with a hedge trimmer while working at our friends house, which landed us in the ER. His hand/fingers were stitched up. We are thankful. It could've been SOOOO MUCH worse. But, he has ALL of his extremities and was only out of tennis for 2 weeks. He's playing District's this weekend, and has already secured his spot for Regionals (Bi-Districts) next weekend in Tacoma, representing Prairie High School.  I'm fixin' to contact the local hospitals for my own parking spot or at LEAS...

 (A last ditch effort to rendezvous in Seaside and beat the PNW heatwave) *UPDATES* 9/1 Ezrah's recent surgery couldn't have gone better. Her pain was minimal, recovery was smooth, and we REALLY thought the cryto ablation worked... until the pain on her tibia returned the night of the 27th, 28th, 29th, 30th, and again last night. It's the same pattern. She feels ok during the day, but at night, the nerves start firing, and sleep becomes elusive. SUPER common response to an Osteoid Osteoma. We have a routine Rheumatology check up at Randall's next week with MORE intel to show from the summer (circulation issues and random swelling joints), but, alas, I'll be shocked if we get an auto-immune diagnosis. The rheumatologist simply says her symptoms, "Don't add up." The cycle/runaround is never ending.  Tony is stable. His diet is SUPER restricted, but he's had no issues since our last visit where the drain was removed. His lifestyle has done a 180, thou...

               (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.)

                        Happy is hot Lipton Tea *UPDATES* 5/22/23 9pm Another LONG day. Tony went to the OR at 1 p.m., and surgery lasted 6 hours. I HATE the wait. LOATHE. It's excruciating.  We are FINALLY back in the suite. I don't have a ton of info as I've not personally spoken to the IR Team, but I believe the surgery TODAY was successful!   (In regards to my humor yesterday. I mean no disrespect to anyone. I believe laughter really is the best medicine, and it's one of the ONLY things that helps my sanity. I HAVE to find the humor. It's essential. For me. And, I LOVE laughing. Laughing's my favorite.)  Hearts & Kitties, Beckyoncé

*UPDATES* 5/21 6:30pm What a maddening "system" and a completely frustrating situation we have found ourselves in. First of all, Tony is ok. He had a 5.5-hour surgery to repair the 3 pseudoaneurysms, but they were NOT successful. They also were not able to remove the drain quite yet, and they have discovered a clot that may have come on BECAUSE of today's procedure. He's in recovery and will stay at least TWO more nights at OHSU. The IR team will discuss the plan going back in tomorrow and possibly a different surgery altogether. (This is night 3 at once again, the most sterile B&B in Portland.) But, we are at their mercy. And we are thankful to be here. Yes, today is a setback. But, Tony will fight. He always does. Here's how pancre-apocalypse all went down starting on 5/13. It’s long. But, I promise to make you laugh!  After calling the "on-call" doctor's at OHSU LAST Saturday (5/13) because we were having some issues with Tony's drain. (Re...