Finally, after more than a year of antibiotics, Rachel got the okay today to finally stop taking the oral antibiotic after her post-op infection from last summer. Woo!

Rachel got the results of her scans today. They’ve been watching some spots in her lung for months now and had previously thought they were either changes (damage) from radiation or inflammation from her post-op infection. One of the spots grew for the second time and now appears to be calcifying. The doctors are pretty certain this is osteosarcoma that has metastasized (spread) to her lung. She is meeting with doctors and discussing her options, which are surgery to remove the small tumor or cryoablation – a technique to freeze and kill the tumor. It’s looking like the cryoablation will be the route she goes with first, with surgery as an option if the freezing doesn’t work.

After being postponed for nearly a year, our Make A Wish trip to Scotland finally happened! A limo picked us up and drove us the 2 hours to Logan Airport in Boston for our flight to Edinburgh. We arrived in Edinburgh mid-morning on May 24 and spent the next couple days exploring the city, visiting Greyfriars Kirkyard, the Surgeon’s Hall Museum, and Edinburgh Castle.

Edinburgh Castle

Surgeon’s Hall Museum

Random phone booth

Tom Riddle’s grave, Greyfriars

Greyfriars Bobby statue

On Monday, May 27, we traveled to the Crossbasket Castle Hotel outside Glasgow and stayed there for the night, exploring the grounds and nearby nature trail and enjoying afternoon tea and scones.

Crossbasket Castle Hotel

Crossbasket grounds

Tea & scones

Greenhall Park

On Tuesday, May 28, we started on our 3-day tour of the Highlands, Isle of Skye, and Loch Ness. Words cannot describe the beauty of the Highlands! We saw so many amazing things on our tour. Here are just a few of the highlights.

3 sisters in front of the Three Sisters Mountains

Dun Beag Broch

Eilean Donan Castle

Loch Ness

Portree Harbor

Staffin Beach

Dinosaur footprint, Staffin Beach

Kilt Rock

We are so thankful to Make A Wish Maine for making this trip of a lifetime possible! ❤

Exactly one year ago today, we were sitting worried in a waiting room at Mass General, anxiously awaiting news of how Rachel’s tumor resection surgery was going. In addition to the usual worries surrounding a surgery that delicate, next to the spinal cord (so many things could go horribly wrong), we had the overwhelming fear of “what if they can’t remove all the cancer cells…”

Rachel came through that surgery fine and they were able to remove all the remaining cancer cells with clear margins – meaning today she’s celebrating one year cancer-free. ❤

Last Friday she moved into her college dorm and is currently in the middle of her first week of classes (finally – it’s been a long time coming!)

The meropenem IV antibiotic eventually started to make Rachel’s platelets go down and her white cells abnormally high, so they switched her to ceftriaxone for the final couple weeks of IV antibiotics. She was able to get off the IV ones and get the picc line out on August 13 and started oral antibiotics that evening. She’ll be on that for 6 to 12 months. The infectious disease doctor said there’s still a 5-10% chance that all of these antibiotics won’t clear up the bacterias and that if she were an older person he’d literally never take her off the antibiotics. Guess this explains why doctors are always so concerned about infection after a surgery.

Rachel had her first post-chemo haircut recently – her first haircut in more than two years. So exciting!

Rachel had her regular 3-month follow-up scans earlier this month. The CT of her chest had some really tiny spots show up that the doctor believes are related to the infection that she’s had. He stressed that they don’t look like cancer at all and are so small he could barely see them on the scan. The doctors in Maine were concerned about the position of one of the screws in her spine after seeing the MRI of her spine, but the surgeon in Boston reviewed them and said that the screw is stable and her spinal cord is safe so there’s nothing he would do differently or need to so surgery for. No evidence of cancer on the MRI either. ❤

This summer has seemed both really long and far too short at the same time. The past week or so has been extremely busy – shopping and packing for college, as both Rachel and Caitlyn move into their respective dorms tomorrow. Our household has experienced the full range of emotions the past couple weeks; I’ve never fully understood the term “bittersweet” until now…

Overdue update here. After being on the IV antibiotic and the oral antibiotic for a couple days, Rachel was feeling really awful. Really nauseous, headaches, her back hurt, pain meds weren’t helping. We’d been told that all of these were side effects (yes, even the pain meds not being effective) of the oral antibiotic that she was on (Rifampin) and that some people just can’t tolerate it. The doctor took her off that one and just left her on the IV nafcillin (penicillin variant.) Then she started getting itchy and had little bumps that would come and go. Her blood tests indicated that she was indeed having an allergic reaction (eosinophils were rising), but it wasn’t all that bad and there aren’t very many antibiotics that treat her staph infection so they kept her on it, just keeping an eye on her lab tests. Then she started needing Imodium to prevent having to go to the bathroom 7+ times a day. And was still somewhat nauseous.

Then on Tuesday, July 10, Rachel started having fluid leaking out from her surgical dressing. Given what had happened last month, we were all freaking out about this. They’d told us not to touch the dressing and that it was to stay on until her post-op appointment on 7/13, so we couldn’t tell where it was draining from and just had to keep patching the areas of the dressing where it was leaking and hope that it was only draining from where the drain tube came out and not from the incision itself.

We went to Boston on Friday the 13th, seeing both the infectious disease doctor as well as the surgeon’s nurse practitioner for the surgical follow-up appointment. Good news on the incision side, the fluid was only leaking from where the drain tube was; the incision itself had healed. The NP removed her stitches and the drain and one of the residents put a couple more stitches over the hole where the drain tube had been.

On the infection side, however, not such good news. The eosinophils were still elevated, even though she’d been less itchy and hadn’t really seen any more bumps. The doctor said her white count was dropping too much, which can be caused by the nafcillin, so he started discussing other antibiotic options – and there were only two options, both of which need to be given every 8 hours, which would have been difficult to handle, logistically (the nafcillin is every 4 hours normally, but her home infusion pump puts it out at a slow continuous rate so we only have to change the bag once a day.) We were really worried about this and then the doctor notices that the nurse had mixed up the numbers when she entered the lab results into the system and her white counts are actually normal, so we’re all relieved and think we’re all set. We move on to the NP appointment, which was actually after the infectious disease doctor appointment. While we’re at the NP’s office (which took FOREVER, I might add, as she was running behind – we had to wait 2 hours just to get in to see her), I got a call from the infectious disease doc. He had checked on her cultures that the lab had been continuing to grow since they took the cultures during surgery. Back during surgery they took 3 cultures. All 3 showed a staph infection. One of them showed granulicatella adiacens (nutritionally variant streptococcus – whatever that is.) Since the other two cultures didn’t show that bacteria, the doctors worked under the assumption that it wasn’t really there, that it was a false positive or cross-contamination or something. When the doctor checked the cultures again when we were with the NP, one of the other two samples showed the granulicatella adiacens. Guess what antibiotic doesn’t treat those? Yeah that’s right, nafcillin doesn’t – and hardly any others treat it either. Those two antibiotics that he was discussing switching her to earlier in the day – yeah those are really the only two options. Vancomycin (used to treat MRSA, among other things) and meropenem, which I’d never heard of before. Meropenem has fewer side effects, so he wanted to try that one first, but we needed to set up a test dose and it was too late in the day by then to do it in Boston so while we were stressing about how to get this set up in Maine, I got another call from the infectious disease doctor’s nurse saying that the company where we get her antibiotics and supplies has their own nurses who will come and do the first dose at your house, so we got that set up for Monday, July 16. The nurse showed up with scary EpiPens and everything, but Rachel didn’t have any allergic reactions and it went fine. Bonus – they’re able to program the pump to give the dose every 8 hours (giving her tiny amounts in between to keep the line open) so we still only need to change the bag once a day.

After a couple days of this antibiotic, Rachel’s feeling pretty nauseous and tired, but since the only other antibiotic option seems like it has even worse side effects, she’s suffering through it. And since the granulicatella adiacens had essentially not been treated all this time, she needs to be on IV antibiotics for a couple extra weeks. “Ideally until August 22” instead of August 8, is what the doctor said, but the nurse also said for us to schedule our needed post-op with the surgeon and they’d try to work around that appointment. The surgeon isn’t in the week of August 22 so I had to make the appointment August 13; we’re waiting to hear back from the other doctor’s nurse to see if that’s long enough on the meropenem or if we’ll have to still wait until the following week and make 2 trips to Boston (and Rachel suffer through that additional 9 days of IV and nausea.) He had also mentioned Rachel needing to take an oral antibiotic for a while (other than the rifampin) but didn’t seem definite on which one or for how long or even if it was definite, so we’re waiting on that as well.

Have I mentioned her college move-in date is August 31?? So much for summer…

We got home around 11am this morning, just in time for the delivery of the supplies. The nurse came right on time around noon and Rachel’s all hooked up to the IV pump and antibiotic.

A very special thank you to Rachel’s nurse, Emily, who worked so hard trying to get Rachel discharged yesterday and came into work early this morning to make sure everything went smoothly and timely so we could get home in time for the delivery and the nurse (and the next dose.) ❤

Rachel was cleared to go home today, but the vendor that supplies the at- home antibiotics and IV pump and supplies does not have anyone available to do trainings on the weekends and refused to help us, saying we needed to wait until Monday.

Rachel’s awesome nurse worked tirelessly all day trying to find a solution for her to go home today. I reached out to Rachel’s in-home nurse from her chemo days and got the name of another vendor that does work weekends and came in and gave me the training. Unfortunately by that time it was too late to set up the in-home nurse for tonight. The at-home IV pump only needs to have the antibiotic changed out once a day, but they can’t put that on here. The antibiotic is given every 4 hours here in the hospital, so we have a short window to get home tomorrow. (It’s also given every 4 hours with the home pump, just automatically does it every 4 hours for 24 hours.)

So long story short, everything is supposedly set up and ready for her to go home tomorrow morning.

We found out this morning that the cultures that were sent to the lab during Rachel’s surgery came back positive for a staph infection. We’re still waiting on test results to find out if it’s normal staph or MRSA. Either way it means 6 weeks of IV antibiotics then a year of oral antibiotics. She had a PICC line put in today, which took a long time and was pretty traumatic.

Doctors had been “cautiously optimistic” that she could go home today, but now we’re waiting on the lab results, then waiting to get the antibiotics delivery and in-home nursing set up before she can come home.

They told us this morning that Rachel was last on the OR schedule (draining was still bad and actually when the surgeon saw it this time), which meant a possibility that she wouldn’t get the surgery today. We heard late morning that it was a definite – cancellation in the schedule so she got in mid-afternoon and was done around 5ish.

There was a tear in the dura around the spinal cord, which they repaired with a graft (from a layer of her fat from somewhere.) They put in another drain and sealed up the incision with dermabond and lots of sutures (that don’t dissolve this time.)

She might be able to go home on Friday, depending on how she’s doing. She’ll go home with the drain in and will come back in a couple weeks to have that and the sutures removed.

The surgeon is concerned that her bones (and the dura around the cord) aren’t healing very well due to the radiation treatments (in addition to her skin not healing.) He said she needs to eat a really healthy diet with a lot of protein, calcium, and vitamin D, and probably should take calcium and vitamin D supplements.