What remained of Rachel’s hair was looking pretty ridiculous, so I bought an electric trimmer and shaved the rest off a couple days ago.

Today Rachel went to the salon to get her wig trimmed. It looks better than it did, but she still doesn’t feel that comfortable in it. It has pretty heavy bangs and is parted in such a way that you really can’t change the part at all. The stylist didn’t want to cut the bangs too much since they obviously won’t grow back if she doesn’t like them. The wig also feels hot and itchy to her, even in January. I don’t see her wearing it very much in the future.

We headed to Topsham today to pick out a wig for Rachel. The American Cancer Society donates a free wig to anyone going through cancer treatments and experiencing hair loss. We found a wig (with real human hair) that matched her natural hair color pretty well, but it’s really thick and not like her naturally thin hair at all. It was the best match they had, though. They suggested we take it to a salon to have it trimmed to fit her face better.

After a long 5 days of chemo treatments, we finally got home today around 6pm. Rachel’s feeling pretty tired but glad to be home.

We celebrated Rachel’s 18th birthday today! She was pretty exhausted with it being day 4 of a 5-day chemo cycle. TJ (Rachel’s boyfriend) brought party hats and other party supplies. Alyssa, Nick, and Caitlyn all stopped by to celebrate too.

 

 

Rachel started her 2nd round of chemo today. We still don’t have results from Boston pathology, but the chemo drugs she will have this time around are sometimes used in treating osteosarcoma as well, so her doctors decided to move forward with the treatment and not wait for the results. This round includes 2 chemos – ifosfamide and etoposide – given each day for 5 days.

Rachel noticed her hair started falling out last night; today it got a bit worse.

She tolerated these chemos okay today – the anti-nausea meds did their job and she didn’t really have much in the way of hot flashes.

Rachel had a visit from a service dog today too!

We are so thankful that Rachel was able to be home for Christmas and was feeling well enough to enjoy the day with family. Alyssa and Nick (Alyssa’s boyfriend), my brother, Mike, and his wife Robin, and my mom (Fern), all joined Rachel, Caitlyn and me at our apartment.

First, the good news: the results of the PET scan confirmed what the doctors saw on the other scans – cancer only at the original site of the tumor on her spine.

In other news, we got a call from Rachel’s oncologist. Doctors at Dana Farber in Boston had been reviewing Rachel’s case and they think that she might actually have osteosarcoma and not mesenchymal chondrosarcoma. They are having their pathologist run more tests to give yet a third opinion on her tumor, so once again we are waiting on pathology.

Osteosarcoma, though still rare, is the most common type of sarcoma, whereas mesenchymal chondrosarcoma makes up less than 1% of sarcomas. The treatment of the two sarcomas are different, so we really need them to get the diagnosis right asap, since she’s already had one round of what is possibly the wrong chemo. The doctor said that the prognosis is about the same for both cancers, but where osteosarcoma is much more common, there is much more research and proven treatment protocols. Osteosarcoma also has less of a tendency to recur years down the road, so to our minds, this would be a relatively better diagnosis for Rachel. She also wouldn’t need to be treated with cyclophosphamide any longer, which was the chemo that most affected fertility (though they all do to some degree.)

Rachel had a full-body PET scan today; the doctors wanted to see if the different type of test would give us any new information. Waiting for results now.

Rachel has had a lot of jaw pain the past few days, caused by the vincristine (which does something to the cranial nerves, causing the pain.) She’s not able to take Tylenol, ibuprofen, aspirin, or Aleve for the pain because all of those will mask a fever. Since chemo will lower her white counts and reduce her ability to fight infections, doctors need to be able to tell immediately if she has a fever so they can start treating an infection as soon as possible. With low white counts, any fever will already be showing up later than normal so it’s really important to know as soon as it shows up. Therefore, her only options for pain relief for the duration of chemotherapy (7-9 months) are narcotics, which Rachel doesn’t like taking unless she absolutely can’t stand the pain. Thankfully, the pain is finally starting the lessen today, so I think she’s over the worst of it for this round.

We are back home tonight. Rachel needed a shot of neulasta – to help her white blood cells recover faster – 24 hours after her last chemo treatment, so we had to wait until that was given before going home. After this first one, I’ll be able to give her the shot at home after her chemo treatments so we won’t have to wait around in the hospital an extra day (I’m guessing the first one is done in the hospital to make sure she doesn’t have a bad reaction, though they didn’t mention that.) The anti-nausea meds are helping pretty well; she hasn’t had too much nausea.

Rachel had a phone consultation with the fertility doctor from Boston today. He confirmed that there is a decent chance she will have problems in the future, given the amount of cyclophosphamide she’s scheduled to have. The longer she waits to start trying for a family, the more likely for there to be problems, since women have fewer viable eggs as they get older anyway and she’ll have even fewer due to the chemo. Her options are basically to either do nothing and hope for the best or to try to harvest eggs and freeze them for future use in the event she does have trouble getting pregnant in the future. The process of harvesting eggs would involve a few weeks of hormone injections to stimulate ovaries and help the eggs mature. Then she would have to go to Boston for the procedure to retrieve the eggs. It would be tricky to work around the current chemo schedule, but her oncologist is willing to work around this if she decides that this is something that she wants to do. Rachel was really upset about this today; it’s a lot to take in for any woman, and way more than any 17-year-old should have to worry about or decide on. 😦