Out of Office(ish)

For those that follow me (Jenn) on facebook, or the business on facebook/IG you know a little bit of what's going on in our personal life.  While we had hoped that this would be a quick one-and-done surgery with only a week of downtime (for me), my availability will continue to be limited through the end of December.  If you'd like to donate or share our GoFundMe Page, please click here.  Thank you!

Chris had right hip pain for several months, he isn’t one to complain of anything especially pain, but the pain reached a level that he could barely get up our stairs and he felt he could no longer do his job safely.  Sept 27th we set up a non-contrast MRI, since this was a “self” referral and not ordered by an outside MD the radiologist called Chris and ultimately told him he couldn’t tell what was going on and it could be anything from a bone lesion to a massive hemorrhage, he told Chris to go to the ER immediately for an MRI with contrast. He agreed to go to the ER where we were told he had Osteomyelitis (a bone infection) in his greater trochanter. He had zero risk factors for this, and everyone was perplexed to how it got there. He had been asymptomatic aside from pain, no fever, no signs of infection systemically, no localized palpable pain/swelling/redness, etc. He was started on IV antibiotics (Rocephin and Vanco) and admitted to the hospital to have a bone biopsy done.

The next day he was told he was getting a soft tissue fine needle aspiration of a portion of the abscess that appeared to be outside of his bone, allowing for them to obtain a sample in a less invasive procedure. Cool, we’re on board. That culture came back with no growth, no cells, it was just a fluid sac. We specifically asked infectious disease and orthopedics if they needed to go in deeper and get the sample via the original plan we were told he would have (surgical bone biopsy) and we were told no. ID said they would change his Vanco and Rocephin (although his wbc’s were responding to the current regimen) to Daptomycin because it would cover “the bad stuff.” We questioned, if it’s “the bad stuff” how could it possibly not grow anything and how is he not sick? Never did get an actual answer for that... but anyways ortho also said no need for the bone biopsy, and he didn’t feel there was a need for debridement - further he said the infection was on a non-weight bearing portion of his leg so he had no restrictions.

He started Daptomycin (although his CPK was almost 1300) - received two doses and was discharged home with orders for daily IV Daptomycin for 6 weeks at the infusion center. After his third dose he started to have muscle fatigue and developed a fever, I was afraid he was having muscle breakdown. He came into the ER, we requested to change to a different ID doctor who immediately stopped the Daptomycin order (because of his body composition he was never a candidate for this medication and should have never been on it to begin with) and she took over his care. Had he completed the original treatment plan his last dose would have been on Veterans Day (the irony) and he would be in no shape to undergo what is to come next.

We told everyone who has been involved in his care that Chris was part of a group of 30 that went overseas right after 9/11 and informed them of all the crazy medical conditions that that specific group has been diagnosed with - without explanation or family history of anything they were diagnosed with. Chris told them all that he was going to have something weird and rare. This new ID doc was the only one that listened to us. She wanted Chris to see a different ortho, so we did and thanks to the ongoing support from our friends who called in a favor they got us in with a competent orthopedic. Unfortunately, this appeared to be out of his scope, as it looked suspicious. However, he immediately put Chris on weight bearing restrictions and was shocked that he was told he had none per the first ortho. We were referred to an orthopedic oncologist at Emory who said it didn’t look like cancer, but it did need to be cleaned out and repaired with a bone graft and possibly a titanium rod. He wanted to withhold any antibiotics until an actual culture was obtained and resulted. We were given three scenarios: osteomyelitis, cancer or a benign tumor. The likelihood of a benign or malignant tumor was very low. Surgery was scheduled for 11/4.

On Oct 30 we were in the kitchen with friends, Chris moved the wrong way and felt a pop with pain. That night he had an extremely difficult time going up the stairs to bed, the next day he couldn’t bear weight and the pain continued to get worse. We went into the ER at Emory where he was admitted and remained until the surgery. Initial post op pathology (the surgeon took a frozen sample to the pathology lab and looked) was a benign tumor originating in the cartilage and no signs of infection. The doc prefaced it by saying an unfrozen sample needed to be looked at, officially, but he was certain it wasn’t cancer and Chris was in the clear. He said no IV antibiotics, no rod, just 6-8 weeks of non-weight bearing, and he would be good to go!

He had a rough time in recovery, he was in a lot of pain and required additional meds and time before I got to see him post op. He got back, I told him what the doc said, and we were excited to have a clear path for treatment, finally! He spent another night in the hospital due to his pain level and he was discharged the following afternoon. He hadbeen home resting and healing and making progress every day. On 11/11 (again, on Veterans Day…) he got a call from the surgeons PA who said he has cancer, Chondrosarcoma, a rare form of cancer, grade 2-3 and he required additional imaging to make sure it had not metastasized.  The most common and likely place it would metastasize to would be his lungs.  Statistically, 600 cases are reported in males each year in the US.

11/13, Chris was back in the ER because he had some swelling and calf tenderness, as well as rib pain - but it just so happens that those complaints come along with the imaging that is needed to check for metastasis. Luckily no signs of a blood clot in his lungs or leg and also no signs of anything else suspicious there either.

The follow-up with the orthopedic oncologist was on November 20th where they explained his next surgery: radical resection of the proximal femur with insertion of a titanium rod and a partial hip replacement.  We were told that his recovery would “suck” (exact words) and could take up to a year but he would never have full function of that limb again.  He will also have a permanent limp and limitations on functionality that will prevent him from continuing with his current job.  Surgery was 12/2.  Just prior to going into the OR the surgeon dropped the news that there were some areas of concern in the muscle around the bone and that would also need to be removed.

He did well in surgery; he has 50+ staples, a joint drain, and a PCA pump to control his pain.  He will require at least one more night in the hospital due to a drop in his Hemoglobin, his pain level and limited mobility.  Today (12/4) was the first time he had been up and out of bed - he did well but became hypotensive, diaphoretic and pale so we had to finish PT at that point.  But, when OT came he did an amazing job with no blood pressure issues.  Fingers crossed that he is discharged by Friday evening and we can begin recovery at home!

Im forever grateful to our friends Amy & Steve as well as our ER family for not only helping with the bullshit but for putting up with my crazy mood swings (which are not over yet... lol) as well as helping me cover my shifts and giving me the time off to be with him. And not to mention our awesome neighbors who have helped with meals and been on standby on days I can’t be at the house.

So, needless to say - we will have limited availability and likely slower response times to emails over the next few weeks but we are still here and we aren't going anywhere.  We didn't push the Best of Hall campaign as hard this year due to all the personal events going on (in addition to planning our wedding), but in the event that we don't win - we are very grateful for having the 2018 and 2019 Best of Hall title and are happy to share that excitement with a different business in the area.

Here’s to 2020 being a better year for everyone!

photo cred Julie Hunter (www.naturallyboudoir.com)

by Jenn