Rachel started feeling nauseous last night about 4 hours after the chemo had started, so they gave her some extra meds to help combat the nausea. They made her really sleepy, so they mostly helped her sleep through the nausea. Tonight she’ll have another treatment of doxorubicin, 24 hours after she had it yesterday.

Rachel’s primary oncologist saw her today. We discussed the long-term effects of chemo a little more today and learned that one of the major side effects is fertility problems, particularly with cyclophosphamide, which she’s already had one treatment of. With the amount of this drug and the dosage she’s scheduled to have, it is likely that enough of her eggs will be damaged to cause fertility problems for her in the future. This was pretty devastating news for Rachel to hear. Her doctor is referring her to a fertility doctor in Boston to see what, if any, options she might have.

Rachel’s port surgery went fine today, other than starting 2 hours late because surgery was behind.

Chemo got started in the evening. This round includes vincristine, doxorubicin, and cyclophosphamide. The vincristine only takes a couple minutes to go in through the IV and Rachel didn’t even notice when they gave her that one. Doxorubicin came next, which is a bright red color. Seeing that red stuff going through the IV made everything a reality for her and she got really emotional. This one also gave her hot flashes. Cyclophosphamide came last. Rachel remained mostly in good spirits throughout the day, especially considering what was going on.

Rachel got some good news today – she got accepted to her top college choice of University of Vermont! 🙂

Waiting for surgery

Waiting for surgery

Killing time with a puzzle

Killing time with a puzzle

Dealing with the hot flashes

Treatment countdown board made by Aunt Robin

Rachel didn’t want to have to deal with caring for contacts with all the hospital visits and feeling yucky from chemo so we managed to squeeze her in for an appointment at the eye doctor today to get an updated glasses prescription and get her some glasses. Took advantage of the convenient “ready in about an hour” of Lenscrafters so that she’ll have them for the start of chemo tomorrow. Pictures tomorrow.

Rachel had an EKG and echocardiogram today to get a baseline on her heart, as the chemo can case heart damage. Her heart function was “perfect” according to the doctor doing the echo. She also had a full-body bone scan to see if the cancer has spread to any other bones. On Saturday she had an MRI of her spine to get a new baseline after the surgery she had last month. We will need to wait for the results on the bone scan.

Rachel had her first outpatient physical therapy appointment today. They mostly checked her balance (which is still iffy) and gave her some exercise to do at home.

Rachel had her follow-up appointment with the neurosurgeon today. Everything is healing well from a neurosurgery standpoint. The doctor will be monitoring her future MRI scans to make sure her spine stays stable because they weren’t able to use the stabilizing hardware during surgery. He referred her to outpatient physical therapy, which should allow her to do more than what she’s been able to do with the few in-home PT appointments she’s had so far. It’ll be quite a challenge to fit in PT along with chemo.

We found out today that the pediatric surgeon is available to do the surgery to insert her port on December 14, so she will have the surgery that morning and then she will be admitted to the hospital and her first round of chemo will start later that same day.

Rachel had her first visit with her oncologist this afternoon. She will need an aggressive chemo plan to treat this aggressive cancer. This will consist of inpatient chemo treatments every other week for 7 to 9 months, starting as soon as possible – likely next week. She will need to have surgery to insert a central line port first, so we need to wait for a pediatric surgeon to be available for that and then they will start the first chemo treatment that same day.

Rachel will also need radiation treatments, which will run Monday through Friday, every day of the week for about 7 weeks. She will continue having chemo during the radiation. These are expected to start a few months into the chemo treatments. Her oncologist will be consulting with the radiation oncologists to see whether she needs the more precise proton beam radiation at Massachusetts General Hospital in Boston or if she will be able to have traditional radiation, which is available here at Maine Medical Center in Portland.

There is a possibility that Rachel will need another surgery down the line if they determine there are still cancer cells on her spine and that they would be able to remove them surgically. The doctor is not sure whether this will be the case yet or not.

The doctor is scheduling another MRI to get a new baseline after surgery and a bone scan to make sure that the cancer hasn’t spread to any other bones. The CT scan of her lungs was clear right before surgery so he didn’t think it was necessary for another one of those just yet. She will also need to have a baseline EKG and echocardiogram of her heart because the chemo can cause heart damage.

According to the doctor, Rachel’s prognosis is about 70%, which is a whole lot better than the 20% that I was finding online. The cancer does have a tendency to recur years down the road, however, just as I read online.

We learned that some of the possible long-term side effects of chemo include other cancer (leukemia, specifically) and a weakened heart.

It was an emotional appointment for everyone. I came away from it feeling both better and worse. Better because we finally knew what the plan was and that it was getting started right away, that they were scheduling more scans, and that the prognosis was much better than I had initially thought. Worse because of how intense and grueling and LONG the treatment plan will be. Rachel will need to miss essentially her entire senior year of high school, just as she was planning for college and getting excited for the future. College will have to be postponed for at least a semester, maybe a year.

Alyssa, Nick, Rachel, Caitlyn, and I continued our tradition of picking out a Christmas tree at our local garden center today. Rachel has grown steady enough on her feet that she was able to walk the rows of trees without the walker, holding her sisters’ hands occasionally for balance. The tree is not quite finished, but we have a good start.

I received a call from the oncologist today with the results from pathology. Rachel’s tumor was an extremely rare and aggressive form of bone cancer called mesenchymal chondrosarcoma. The doctor said that he needs to consult with a team in Boston on the treatment plan, but it will most likely consist of chemo or radiation or both. The doctor also mentioned that he knew that Rachel was making college plans for next fall and that he “wasn’t sure how this is going to affect that.”

Rachel has her appointment at the oncologist’s office on December 6, where we will get more information and hopefully know what the treatment plan will be.

We are all devastated and in shock. Never in our wildest dreams (nightmares) did we think this would be the results of the pathology. We had been led to believe that the tumor was benign and we’d only been waiting to hear what type of benign tumor it was. To reinforce our assumption that it would turn out to be benign, one of Rachel’s uncles had previously had a benign tumor on his spine. It seemed way too much of a coincidence that the two blood relatives would have two completely different tumors in the same location.

Here’s a tip for you: When people tell you not to Google your diagnosis, you should listen. This cancer is so rare that there isn’t much information at all, studies are small and very few and fairly outdated. Most of what I can find puts 20-year survival rates at about 20%. This cancer seems to be known for coming back even years after treatment, without warning.

Rachel is still using her walker to get around, but isn’t in very much pain from the surgery, so that’s good. Getting a little bit steadier on her feet each day. We were told that nerves take a really long time to heal. She still hasn’t been back to school since the ER visit and surgery, since she can’t get around without the walker.

We all enjoyed our traditional family Thanksgiving dinner at our home this afternoon, with all the usual suspects here: Grammy Fern, Uncle Mike, Aunt Robin, Alyssa (older sister), Nick (Alyssa’s boyfriend), and of course Rachel, Caitlyn (younger sister), and me (mom Lori), since we live here.

Still waiting on the pathology results.