Rachel started the 3rd of 4 rounds of cisplatin/doxorubicin late last night. As with all of her chemos, she needs to have hours of hydration prior to it starting. These ones need “at least” 2 hours and then a urine sample is sent to the lab to make sure she’s hydrated enough to start. It was fine after 2 hours the last two rounds but this time it still wasn’t good after 5 hours, so the nurse called the doctor around 10:15pm; he made the determination that she was well hydrated and had the nurse start the chemo, finally.

They also squeezed in a follow-up EKG and echocardiogram before starting the doxorubicin, to make sure her heart is still doing okay. Everything still looks fine.

Rachel met with the surgeon, the pediatric oncologist, and a radiation oncologist at Mass General today. They still don’t have any answers on the timing of surgery and radiation, but at least now Rachel is no longer some nameless, faceless patient from some doctor in Maine that they can ignore. Rachel’s case will be discussed at their “sarcoma conference” on Thursday to discuss the best timing.

Rachel’s case is complicated due to the location of her tumor being on her spine. She will need to have supporting hardware placed in her spine after surgery. Traditional hardware is made of titanium, which not only makes imaging scans harder to read, but also causes radiation to “scatter”, making it difficult to treat with radiation. On the other hand, doing all the radiation up front will affect the surgery, delaying it in order to heal from the radiation. Her chemo will also need to be changed during and after radiation because it’s not safe to give doxorubicin or methotrexate during radiation (sometimes they give methotrexate during radiation, but not where hers will be on her spine.)

Rachel’s methotrexate level last night at 8:30pm was once again a frustrating 0.11 for the 3rd time in a row. At 11:30pm the level came back at 0.08, so she was cleared to go home. We got home around 12:30am.

In more exciting news – Rachel officially committed to Simmons College yesterday! We paid the deposits securing her spot at the school at in the dorms. 😀

Rachel started another round of high-dose methotrexate today. She brought some paints and a small canvas with her from home (which initially was a birthday gift from the hospital from when she was in here getting chemo on her birthday) and she was thoroughly enjoying painting today. It was great to see her having a good time in here.

I got a call from the orthopedic surgeon at Mass General yesterday. He talked a little bit about what will happen with her upcoming surgery. This doctor is an orthopedic oncologist who specializes in spinal tumors. We still don’t have dates for surgery and radiation yet. We’re getting really frustrated waiting; we really want the surgery asap so that she has time to recover so that she can attend prom on May 20 and graduation on June 11. Apparently there is a lot for the doctors to figure out with the timing of her radiation and surgery. It’s extremely rare for osteosarcoma to be on the spine – less than 1%, from what I read on the NIH (National Institutes of Health) website (not to mention osteosarcoma is rare to begin with.)

Rachel’s methotrexate level last night was once again 0.11 after the 72-hour test, so we had to wait another 4 hours for another check. It was okay at that point and we got home a bit after midnight. Most people at that point would say just wait until morning and go to sleep, but Rachel always wants to leave as soon as she possibly can. She always gets so upset with these methotrexate levels that come back *just barely* too high and can’t go home. 😦

Rachel slept all day Saturday and Sunday, and as usual, doesn’t remember much of anything that happened when she was awake – methotrexate really messes with her short-term memory. Today her skin is feeling sensitive and sore and she’s feeling pretty crappy because of that.

Rachel started another round of high-dose methotrexate last night. Today was Caitlyn’s birthday (17!); Alyssa, Nick and Caitlyn all stopped by the hospital to visit. I bought some yummy cupcakes from East End Cupcakes in Portland and we celebrated her birthday in the hospital, opening presents and whatnot. One lucky nurse got to hide out in Rachel’s room and enjoy one of the extra cupcakes with us. 🙂

Rachel was pretty exhausted all day today – couldn’t keep her eyes open again.

Since Rachel was still 17 when she was diagnosed, she qualifies for the Make A Wish program. Tonight we had a visit with her “wish granters” to talk about what she would like to do for her wish. She is planning on a trip to Scotland, probably sometime next summer, when she’s done with treatments.

Rachel and Caitlyn and Caitlyn’s friend Jessie went prom dress shopping today. Rachel was pretty tired and a bit nauseous and had to take rests, but thankfully, made it long enough to find the perfect dress. 🙂

Rachel’s blood counts came back really low when they checked them yesterday, so they had us bring her to the hospital for a blood transfusion and a platelet transfusion. Platelets are generally faster to infuse than blood (1 hour versus 2), so they started that first. She had an allergic reaction to the platelets, so they had to stop the transfusion for a while and give her Benadryl. Then they infused the rest of the platelets at a slower rate. Finally finished the platelets around 6:30pm. Rachel kept her sense of humor, as usual, and was taking selfies of her puffy eyelid (from hives.)

We then had to wait for the blood to be ready; that didn’t get started until 7:30pm and they infused over 3 hours instead of 2 because of the earlier reaction. We didn’t get home until almost midnight.

Rachel got another visit from a service dog for her trouble, though.

Rachel had an appointment with her oncologist today. The bone scan results looked pretty much the same as the one she had back in December, before treatment started. We are still waiting to hear back from Boston on the timing of radiation and surgery. They had indicated to us that it should start in 4-5 weeks, but our doctor here said that they didn’t indicate timing to them.