How it all started… Part Two

My six-year-old boy and I arrived at the pediatric ER October 2020, slightly frozen in fear that we would get covid while waiting to get him admitted for surgery. After a couple hours we were called back to an ER room where it took 3 grown adults to hold down my tiny human for an IV. I’ve never seen anything like it. It was a traumatic moment for all, but they gifted him with a book and tiny Dumbledore toy so he recovered relatively quickly. I’ll spare more details but it was a long night with more waiting. We got admitted for surgery after some confusing conversations with the orthopedic doctor on-call for Friday (he hadn’t gotten the memo about the on-call Saturday doctor planning to do surgery) and we were in a room a bit after midnight.

If this were predominantly a blog about CRMO, I would spend some time detailing our hospital stay. But the point is just to emphasize what a few years we went through all in a row. That period of not knowing what was going on with our kid while struggling with my own new autoimmune diagnosis was the beginning of a long period of health drama. His surgery went smoothly and we were told it was in fact an infection that had walled off into a Brodie’s abscess in his lower femur. They gave a rough explanation of how you can get a bone infection without an obvious injury, but admitted it was pretty rare. He ended up spending a week in the hospital getting IV antibiotics. It was completely unexpected and very stressful (I naively thought we’d be in there for 2-3 days tops), but our community was extremely helpful in providing meals, sending him care packages, and helping with the little ones back home. It was getting a little lonely for him stuck at the hospital during a pandemic, but he did get an encouraging visit from the Jacksonville Jaguars mascot, complete with a care package from the team. We were finally discharged and sent home with directions for him to take 10mls of refrigerated liquid antibiotics, three times a day for at least 4 months. The damage done by the infection caused him to need a walker for a few months too so that he wouldn’t put too much weight on his left leg while his body worked to fill back in the hole in his femur.

It was a long couple months but by mid December he was cleared to not use the walker anymore. (Shout-out to young bodies being wicked resilient! His body just made more bone in his femur in a couple months, like easy-peasy.) We also found out that they would actually be leaving him on antibiotics for 6 months as a precaution because no bacteria resulted in the stuff they cleared from his abscess in surgery. I was concerned about what that level of antibiotics for that long of time would do to his body, but didn’t want the infection to come back…

In the meantime, my grandpa, Bubba, passed away pretty quickly in December after struggling for years with severe dementia and recurrent UTIs (he eventually got one bad enough that he became septic and couldn’t fight it off). Then came January where I went in for a routine pelvic ultrasound to check on my ovaries. I have known since 2014 that I was a carrier of the BRCA2 genetic mutation (I will dive deeper on this later in a different blog because this is definitely one of the headliners in things that have impacted my life). During my ultrasound they informed me that my ovaries looked great, but my IUD was totally in the wrong spot. Long story short, it was embedded in my uterine wall and unable to be removed without surgery. I said ok, but no way was I getting another one put in. I knew that one way to reduce my ovarian cancer risk related to the BRCA2 mutation was by removing my Fallopian tubes and we were positive we were done having biological kids. I elected to have my tubes removed while they were down there removing the IUD anyways. Pretty quick laparoscopic surgery and with a relatively easy recovery period too. Not the end of the world, but yet ANOTHER unexpected health thing we were dealing with in less than six months.

To just really put the icing on the cake, when I was just about to reach my two week post-op date and be cleared to exercise again, my husband tested positive for covid. This was now February of 2021. No healthy adults in their thirties were cleared to be vaccinated yet and this was a pretty hefty strain of covid. It was also still during the time when you had to quarantine for a full two weeks after symptoms began. I got covid about three days after him and we were quarantined in our home with our three young and perfectly energetic children while we were very sick. Luckily the kids never got it, but they were required to quarantine past our quarantines due to exposure. I finally just took them to get covid tests so they could return to school. We didn’t leave our home for 20 of the 28 days in February and I ended up unable to taste or smell for a month and a half- there’s a funny story there about buying a car during that time but that’s a story for a different day.

Back to our son… Around 6 months after beginning them, he was cleared to stop antibiotics. Sadly, he was limping again within a couple weeks. Dr. Mandel ordered an x-ray but it was inconclusive. So Dr. Midani, his infectious disease specialist, decided it was safest to keep him on antibiotics for a full year. I was devastated. The logistics that go into getting a young boy refrigerated antibiotics 3 times a day, every day, are a lot. I’m so grateful to his school for being incredibly understanding and setting a timer every single day to remember to get him from class for his meds. Every time we flew or did anything out of the ordinary or wanted to be out somewhere the whole day, I had to bring a cooler with an ice pack for his medication. This ended up going on for about 18 months total. He went through several more MRIs, some x-rays, TONS of lab work (which he hated the most), and regularly saw orthopedic specialists and infectious disease specialists. Finally, we said that there had to be another way. He simply couldn’t stay on antibiotics forever. We removed him from antibiotics and his pain was intermittent- not better, but not worse, and not constant. He had another MRI and it didn’t seem to be worsening, so we were going to wait and follow-up in a few months. If it was worse, they would do surgery again to try to clean it out and we’d go from there. By June of 2022 it wasn’t worse, but he had new pain in his opposite leg near his ankle. I figured it had to be an injury- how could he have two bone infections? At his young age, after having bone pain so frequently, I wasn’t sure that he recognized regular aches and pains from infection pain. But by early July his ankle was swollen, red, and worsening quickly. I talked to our chiropractor and agreed that I should take him into the orthopedist just in case. They did an x-ray and there was a new lesion in a new location, very near his growth plate. They did an emergency MRI that day (where was this when we thought he had cancer?!). Dr. Mandel was out of town, but we saw a great new crew of other doctors. They felt strongly that it was another infection and that if we didn’t do surgery quickly it could permanently effect his growth plate on his right ankle. So he went in for surgery number two and it also went smoothly, but I began doing my own research. I discovered there was an autoimmune condition called Chronic Recurrent Multifocal Osteomyelitis (CRMO), which is a fancy way of saying that his body attacks his bones, causing inflammation in multiple locations that can lead to lesions/osteomyelitis that doesn’t have a bacterial origin. Sure enough, no bacteria resulted from the surgery again with this new lesion. They had him on more antibiotics as a preventative due to the surgery, but this time he broke out into a full body reaction to the very same antibiotic that he had taken for a year and a half prior.

We quickly took him off of medication and began to deep dive on learning about CRMO. We needed to get him into a pediatric rheumatologist in order to diagnose this (or figure out what else it would be). It took months (there are not a ton of pediatric rheumatologists available so their calendars are FULL), but he finally got in and did all the lab work and had a full body MRI this time- as opposed to just a knee or ankle before. They found more lesions and Hudson was officially diagnosed with CRMO in October of 2022, almost exactly two years after his first surgery. Luckily this time, knowing it’s an autoimmune condition with no bacteria involvement, we could actually treat what was truly going on in his body. He’s been on NSAIDs twice daily to treat the inflammation and hopefully resolve the other lesions on his bones. He still has bone pain occasionally and requires routine MRIs/labwork, but having answers helps tremendously in easing his physical pain and our mental turmoil from before.

While all this was happening with Hudson, I had A LOT going on with my breasts and imaging scares… Eventually finding out I had breast cancer in December of 2022, just two months after Hudson was diagnosed with CRMO.