Rachel had a CT scan of her lungs this morning and a full-body bone scan this afternoon, to make sure the cancer hasn’t spread. On Wednesday night she’ll have another MRI of her spine. We most likely won’t hear the results until her appointment with her oncologist a week from tomorrow; trying not to worry in the meantime.

This Thursday, August 17, we head to Boston for her pre-op appointment.

We got home last night around 11:30pm. Rachel’s still feeling tired and a bit nauseous today, as usual with these treatments.

One of the nurses yesterday said to me about Rachel, “I just love her. She’s such a great kid.” ❤

Last night, Rachel’s doctor said that this “could very well be her last” chemo treatment – #15 if you’re counting (and we are.) He has no plans for any more chemo after surgery and radiation. He still needs to talk with the doctors in Boston, but the oncologist there didn’t really indicate there’d be a need after surgery either, unless the pathology shows something unexpected (more viable cancer cells than they expect, indicating a poor response to the chemo and radiation treatments.)

Rachel’s blood test yesterday showed that her platelets actually went up, so she didn’t get a platelet transfusion. Her hemoglobin went down quite a bit though, so she did end up getting a blood transfusion yesterday morning.

On Thursday, “camp week” activities continued at Barbara Bush Children’s Hospital. We enjoyed a pizza party (there were also ice cream sundaes but Rachel didn’t feel up to them), followed by Rachel’s oncologist and one of the Child Life staffers being “slimed.”

Rachel started another round of ifosfamide and etoposide today. The doctors wanted to squeeze in another short (3-day) round before surgery so that she doesn’t go 2 months without any treatment before the surgery on September 6. They don’t know if she’ll need more chemo after surgery, so it’s possible this could be her last chemo, but we don’t want to get our hopes up.

Her platelets were only 62 when they should be at least 75 for chemo and her hemoglobin was only 8.6, so we suggested that they consider giving her preemptive transfusions while she’s in here on Friday since she was already tired from the low hemoglobin before we started this round and her platelets were already at a disadvantage. They’re going to check her levels early Friday morning and decide from there.

She arrived in her hospital room to an awesome Wonder Woman pillowcase on her bed that she can take home with her. This week is also the “First Annual Camp Week” at Barbara Bush Children’s Hospital and she got another camp-themed pillowcase that’s really cute, with animals in the fabric print. She also got a camp T-shirt and we all had s’mores this afternoon.

 

Yesterday we got to celebrate Alyssa’s 21st birthday:

Rachel has been wanting to pick blueberries for a couple weeks now and today the blueberries and Rachel’s energy level aligned:

Rachel’s lab tests on Tuesday showed that her hemoglobin and platelets were getting pretty low and her ANC was 0. Re-checked labs this morning, doing a blood transfusion at the clinic without waiting for lab results since it was already borderline on Tuesday and she was feeling tired and started to get a headache. Platelets had dropped even more, so we opted to do a platelet transfusion as well. We had to go to the hospital for that since she always has an allergic reaction and they want to have the safer hospital setting in case she gets a really bad reaction (she didn’t.) White count continued to drop and ANC was still 0.

Sometimes a hospital visit has its perks: Rachel got a visit from another service dog while getting platelets.

We got home last night around 11pm. Rachel’s exhausted and somewhat nauseous, as usual.

Rachel was way more tired today than she was the last time she had these chemos. She even refused a visit from a service dog, which she always looks forward to. 😦

Rachel has recovered from the radiation and the last round of chemo enough to start a 4-day round of ifosfamide and etoposide today (rather than the typical 5-day round.) They may try to squeeze in another round after this one before surgery, depending on how quickly she recovers from this one.

Rachel spent July 6-9 at a “campference” for other young adults (ages 16-24) dealing with cancer. My friend Sara and I went to Massachusetts today to pick her up and bring her home. The camp is through an organization called Next Step (http://www.nextstepnet.org/).

Rachel had a great time at the camp, even performing with a ukulele on “stage night.”

Rachel felt well enough to stay out tonight and see some fireworks. My mom, Rachel, Caitlyn, Caitlyn’s boyfriend Sean, and I all went to Pine Point Beach in Scarborough and watched quite a few fireworks from private citizens all along the beach. We could see the fireworks by the Pier in Old Orchard Beach in the distance.