Rachel was discharged from the hospital around 2:30 this afternoon. 🙂

She worked with PT this morning, walking two laps around the area, walking up and down a whole flight of stairs, and practicing getting in and out of bed without using the rails and while keeping the bed flat.

Her follow up appointment with the plastic surgeon isn’t until next Monday, a week from today, so she’ll have the drains in until then. The follow up with the other surgeon is next Thursday, the 21st, so rather than making her ride back to Maine on Monday, then back to Boston and back to Maine a couple days later, we’ll just stay here in Boston until after the post op with the surgeon, probably coming home Saturday the 23rd.

Rachel was taken off the IV morphine and moved to pill painkillers this morning. Makes it much easier to get up and around without being attached to the monitor on the wall and the IV pole.

Her pain is continuing to get better. She’s really stiff, especially her neck and shoulders. Getting a bit better at shifting herself to comfortable positions.

Rachel went for 3 long walks today – one of which was really long enough to count as 2 on its own.

We got a visit from my friend and coworker tonight, who brought a bag of goodies for Rachel. Thanks Jen! 🙂

I expect that Rachel will probably get a visit from PT tomorrow, since the weekend will be over.

Rachel is finally starting to get a little bit of an appetite back today. The nurse is going to ask if she can be switched from the IV morphine to a pill painkiller tomorrow. Then she’ll be free of everything except for the two drains from the incision.

Yesterday afternoon we asked if her IVs could be taken out and use her port instead because they were bugging her, plus the pump kept beeping every time she bent her arm. The nurse switched them all over, but left one IV in (with nothing hooked up to it) overnight just in case. That was removed today. She’s got some good sized bruises on both her inner elbows from those. Hand looks okay, at least.

Rachel had a visit from occupational therapy this morning. She got a few tools to help her, like a long-handled sponge for the shower, elastic shoelaces, and an extra long shoe horn. She went for another short walk with OT too. No PT on the weekends.

The surgeon ordered an X-ray of her spine today, wanting to see what it looks like and the hardware placement while she’s standing up. They took X-rays in the OR of her spine while she was lying down.

She’s still in a lot of pain when she has to turn or shift positions in bed and needs assistance. Also can’t move her arms much (hurts too much plus she’s not allowed) so reaching to eat or do anything is difficult. Still improving a little each day.

Rachel was moved from the PICU to the regular children’s ward around noon today. She went for a short walk with PT this morning and another short one with a nurse this afternoon. PT will try for a longer walk and maybe stairs tomorrow.

She’s still hooked up to heart rate monitors because she’s still using the morphine PCA (where she controls how much morphine she gets) so it’s a real headache just to get up to go to the bathroom; they have to unhook those before she can get up.

She has to share a room here, unlike at Maine Med or the PICU here. That’s taking some getting used to – other people talking and having visitors and watching TV when all she wants to do is sleep.

Mass General children’s hospital gives out stuffed animals instead of quilts (which is what Maine Med gives), so she got a new bear and also a nice welcome sign when she got there.

Her oncologist (here in Boston, not Portland) stopped by this evening and said he’d see her on Monday when he’s back, so it sounds like she’ll be in the hospital at least that long.

They took Rachel off the breathing tube this morning around 9am. She vomited a little when they took it out, which of course hurt her back (plus sitting her up quickly when she started didn’t help.) She woke up a few times overnight and was awake this morning, so the breathing tube was really uncomfortable. Her nurse said she’s never really seen someone come out of extubation as quickly and as well as she has.

They also removed her catheter this morning, as well as the arterial line in her arm (which was to get a really accurate blood pressure during and immediately after surgery), so she’s got a couple fewer lines stuck in her now too.

Her face was still pretty swollen this morning, but continued to improve throughout the day.

She got a visit from her new friend Auggie – a big black lab – this morning.

Physical Therapy came and got her out of bed and into a chair for a while this morning. They will work on trying to get her walking a bit tomorrow. She had some nausea when she was up, so they gave her something for that and she felt better.

She’s had some water, a few sips of juice, and a couple bites of cantaloupe today. She’s been able to get up and use the bathroom (with help) a couple times.

Her surgeon visited this morning and said that the surgery really couldn’t have gone better, so that was great to hear.

The plastic surgeon and about 14 others from plastics came to see her this morning before we got here. He stopped by again while we were gone for lunch, so we missed him both times today. Rachel said he told her they would probably try to move her out of intensive care tomorrow.

Her incision is longer than her previous one, though it’s hard to be sure just how much since it’s covered up with a thin strip of tape. It has two drainage lines coming out of it.

She’s been rating her pain around a 4 or 5 on a 10-point scale most of the day, though of course it hurts more when she moves. She said it’s better now than it was earlier in the day, too. She’s hooked up to morphine that she controls with a button. They said once she starts eating more they can also give her oxycodone.

Rachel is in the pediatric ICU (pediatrics mostly due to her small size, but also her age being barely an adult.) We just got done visiting her there. They are keeping her fully sedated and comfortable and on a breathing tube overnight since it was such a long surgery and it’s late. The plan is to take her off sedation and remove the tube in the morning. They will also be getting her up and out of bed tomorrow. Her face is really swollen after being on her stomach for surgery all day (another reason to keep the tube in.) Her body temp is also low so they have her wrapped in blankets and a warming heater. She had to have a blood transfusion during surgery, which we knew was a possibility, especially since she was still a bit anemic from her last round of chemo last month.

The surgeon reviewed the tumor cells with the pathologist. They were unable to see the tumor for part of it because of calcification, so they need to do something to de-calcify it in order to test how much of the cells were viable. There was another part that they did see had no viable cells, which is great news.

The surgeon had to remove two nerve roots near the spinal cord and had to “oversew” them to make sure no spinal fluid leaked. He scraped off the scar tissue from the dura of the spinal cord and didn’t see any viable tumor there either. The radiation oncologist was worried that it wouldn’t heal if he used the radioactive plaque on the dura of the cord because the surgeon had to oversew the nerve roots – and since they didn’t see any viable tumor there, they decided not to use the internal radiation plaque treatment.

The surgeon removed all of what he had planned to remove (the transverse process, part of the vertebrae, part of the rib, two nerve roots) and was able to use the carbon fiber supporting screws.

The plastic surgeon was able to use a different muscle (the trapezius muscle instead of the lattisimus dorsi) that’s closer to the incision because of how the other surgeon did his work. I’m not entirely sure what that means but he made it sound like good news.

I’ll update more tomorrow once Rachel’s awake.

Rachel’s surgeon came to talk to us around 4pm. His part of the surgery is done and went well. We are now waiting for the plastic surgeon to finish closing.

More details later.

We arrived in Boston yesterday and spent a few hours at the Museum of Fine Arts.

Rachel had another MRI this morning, ordered by the surgeon. We headed to The Cheesecake Factory for lunch, of course bringing some cheesecake home for dessert later.

We have to report to the hospital  (Mass General) at 5:30am tomorrow, for an approximate surgery start time of 7:30. The surgery will last most of the day (and is the only one on her doctors’ schedule for tomorrow), so we’re gearing up for a long day of waiting and worrying in the waiting room.

Rachel had an MRI scan on Wednesday night. The techs had a lot of difficulty finding her veins to inject the contrast. 7 needle sticks later, they were finally able to get it in and finish the MRI. We got home around 11pm (after an 8:30pm start to the MRI) and Rachel’s poor hand was really hurting after all the needle sticks (3 in one arm, 3 in one hand, and the final successful one in the other arm.) The frustrating thing is that she has a port that could be used for this, but radiology isn’t allowed to access ports. I asked if one of the nurses from pediatrics could come downstairs to do it, but they’re not allowed to have anyone else do any procedures on the radiology patients “for charting purposes.” So frustrating! She was accessed that morning by her home nurse too, to do her blood test, but she de-accessed her right after. It would have probably made the EKG and echocardiogram a bit difficult to do if she was accessed anyway. They used the veins in her arms on Monday for the bone scan contrast and blood test with no problems at all, too.

On Thursday, Rachel had her pre-op appointment with the main doctors on her surgical team, which includes Dr. Joseph Schwab, an orthopedic oncologist specializing in spinal tumors, Dr. Thomas Delaney, a radiation oncologist, and Branko Bojovic, a plastic surgeon. Not wanting to leave them out, Rachel’s primary pediatric oncologist here in Maine is Dr. Aaron Weiss, and her pediatric oncologist in Boston is Dr. David Ebb. Her neurosurgeon back in November was Dr. Joseph Alexander.

For those of you interested in the technical medical details, Rachel’s first surgery back in November was a laminectomy of the thoracic vertebrae T3 through T5, which means they removed the lamina and spinous process (the bumpy part of your spine that you can feel under your skin) of those 3 vertebrae in addition to the tumor. The remaining cancer cells are on the transverse process of the T4 vertebra, so next month’s surgery will remove that transverse process plus the nerve root near it and part of her rib. She will probably have numbness there because of the removal of the nerve root. They will insert at least 4 supporting hardware screws made out of carbon fiber. Carbon fiber is regularly used in Italy but still has not been approved by the FDA here in the US, so she is technically in a clinical trial for these and they are using them under an exemption. As I mentioned before, these will not cause the problems for further radiation treatments and imaging scans that traditional titanium screws would cause. They also hold up better to chemotherapy treatments than titanium, but we’re certainly hoping she doesn’t need any more of those.

Below is a diagram of the relevant areas of the spine. I circled in blue the areas that were removed in November and in red the area that will be removed next month.

Dr. Delaney, the radiation oncologist, will be treating Rachel with a radioactive iodine plaque placed directly on the dura (outside covering) of her spinal cord during surgery. There is a risk that the dura will tear during surgery, in which case they won’t be able to do this treatment because the radiation would make it so the tear wouldn’t heal properly. The doctors have mentioned that they think there might be some cancer cells on the dura itself, so we are certainly hoping that they are able to do this treatment. Dr. Delaney is the doctor who pioneered this sort of treatment. Mass General was therefore the first hospital to do this treatment (and may actually still be the only one doing it.)

Dr. Bojovic, the plastic surgeon, will be in the operating room to assist with closing the incision. Since she’s had a previous surgery in the area and has had radiation on that area, there’s a risk that there’s not enough good skin on her back to close the incision. It’s possible she will need a skin graft, but he doesn’t think so. The procedure he thinks she needs involves taking the lattisimus dorsi muscle on her back and detaching part of it and flipping it around to help cover the spine and hardware screws. This is a similar procedure to what they do in breast reconstruction surgery, though obviously her muscle only needs to move a little bit and not all the way around to her chest. Dr. Bojovic is the chief of plastic surgery at Shriners Children’s Hospital in Boston, in addition to working at Mass General.

The surgery will last most of the day and is the only surgery that her team has scheduled that day. Dr. Schwab estimated that they will be done around mid-afternoon, though Dr. Bojovic estimated early evening. If she’s under anesthesia for 8 or more hours, they will probably have her stay in the ICU for a while after surgery. Her length of stay in the hospital depends on how the surgery goes, how much the plastic surgeon needs to do, how quickly she recovers, etc. They said to plan on at least 3 nights in the hospital and up to a week or more. There’s a possibility she will need to go to a rehab facility afterward. Her post-op appointment is scheduled for September 21 and Dr. Schwab indicated it would be reasonable to stay in Boston until after that appointment, so we are probably going to do that. Rachel will have to avoid bending, lifting, and twisting (the BLTs, they said) after surgery, but they want her to do lots of walking.

We requested copies of her recent CT, bone, and MRI scans so that we could bring them to Boston with us. Dr. Schwab wants her to have another MRI at Mass General prior to surgery, as their MRI machine is much more detailed than Maine Med’s (shocker, right?) We received written final reports on the CT and bone scans with our scan copies. The CT scan report reads, “There are no suspicious nodules/masses to suggest pulmonary metastatic disease.” The CT report did mention that her heart suggested an “underlying element of anemia”, which we already knew from her blood tests. The report mentions “interstitial thickening” in her right lung that “might be related to radiation near this region.” We’re not sure what this means, so we will ask about it at her appointment with Dr. Weiss on Tuesday. The bone scan report states that there is “reduced but persistent uptake seen in the left T4 transverse process when compared with the last exam. No new or progressive findings”, which means that there are still cancer cells showing up, but less than before and the cancer has not spread to any other bones.

Rachel’s hemoglobin and platelets kept going down this week; she had to have blood tests on Monday, Wednesday, and Friday, to make sure she didn’t need transfusions. Yesterday’s results showed that they finally seem to be on the rise and she didn’t need any transfusions (borderline, but not quite low enough to be necessary.)

We heard preliminary results of the CT scan and bone scan from one of the oncologist’s this afternoon (not her primary oncologist.) Bone scan looks better than the last one (and still nothing has spread.) There was an area that lit up on the CT scan, but they think it’s just from the radiation she had in May-June and are not concerned at all (but that doesn’t mean it doesn’t freak us out a little to hear that.)

They also decided to throw in an EKG and echocardiogram this morning to make sure her heart is still functioning okay after all the chemo (specifically the doxorubicin.) The doctor doing the scan said everything looks good, but we haven’t heard how today’s scan compares to her initial one back in December, before starting chemo.

MRI tonight, Boston tomorrow.