Rachel felt great for prom today, thanks to all the transfusions she got in Boston this past week. Her doctors were wonderful and really wanted to make sure that she felt good and was able to enjoy this special day. She and her sister went to the salon together this afternoon to get ready for prom – makeup for Rachel (services donated by the stylist of one of my coworkers) and hair and makeup for Caitlyn.

We all went to a pretty little park in Scarborough to take pictures, then the girls and their dates went out to dinner (separately) and then to prom. They both had a wonderful time. 🙂

Rachel’s platelets seem to be on the rise and not low enough to need a platelet transfusion today. After the final radiation treatment for the week, we spent some time shopping at Quincy Market, went out to lunch, and then headed home to rest up before prom tomorrow. 🙂

Rachel’s oncologist really wants to make sure she feels great for prom this coming weekend. She got two blood transfusions today – one before radiation and one after.

They will check her counts tomorrow morning to see if she needs another platelet transfusion before she goes home for the weekend.

Rachel needed a platelet transfusion today. They were able to infuse over 2 hours instead of 4 by giving her a steroid (solumedrol) and Tylenol in addition to Benadryl. She still got a couple of hives right at the very end, but she did when they did it over 4 hours in Portland too. Her white count is down to 0 again, so hopefully she doesn’t get sick. She also had a headache today.

Radiation continued today, no problems.

We checked into our apartment at Christopher’s Haven (http://christophershaven.org/). The apartment is great – a separate bedroom with a queen bed, a twin bed off the living room area with a curtain for privacy, a pull-out sofa, kitchen with dishwasher and gas stove and oven. And it’s located directly across the street from Mass General.

Rachel had her first radiation treatment, which went fine, lasted about 20 minutes. She then met with the pediatric oncologist, where they drew labs to check her blood counts.

 

We got home just before 9pm tonight. Chemo went okay this time, not as tired as she was back in December, and not too nauseous. She got a visit from another dog today.

Alyssa, Nick, and Caitlyn all visited on Saturday. It was also nurse appreciation day; we got some pens that look like syringes for Rachel to give out to the nurses today.

On Sunday, Rachel was able to go outside in the hospital courtyard for a few minutes (until she got too cold from the breeze.) TJ visited later that day and brought some Thai food for her.

Yesterday we got word that the surgeon was approved to use the carbon fiber supporting hardware. We thought that had already happened, but apparently he still needed to get approval from the hospital review board. So, great news about that.

We decided that we would rather start the next round of chemo here in Portland, where everything and everyone is familiar, and to give more time to recover before prom, rather than waiting for Boston to start the next round at the same time as radiation. Unfortunately, that means Rachel only had 2 days at home, since she just got home from the last round on Monday and had appointments in Boston on Tuesday. The doctors have switched her back to ifosfamide and etoposide instead of cisplatin and doxorubicin, since she can’t have doxorubicin with radiation. The ifos/etoposide is what she had back in December over her birthday when we still weren’t sure what type of cancer she had. This round will be 5 days, both drugs each day.

Since the chemo plan is being changed due to the radiation, we’re not exactly sure how many more rounds of chemo she has remaining, so I’m just going to mark what round it is without stating how many remain. This is round #12, counting the two rounds she had in December with the initial incorrect diagnosis.

Rachel and I had takeout from Margaritas restaurant tonight for Cinco de Mayo.

Rachel had another hearing test today to see how her ears are handling the cisplatin treatments. The test showed that she has hearing loss in the top two frequencies. We’re not sure what, if anything, this means for the remaining round of cisplatin that she is due to have.

Today Rachel had an appointment with the radiation oncologist, followed by a “CT simulation” needed to prepare for the start of her radiation treatments. Radiation treatments will start on May 15, run for 5 weeks, 5 days a week. She will need at least 5 weeks of recovery from the radiation, then surgery.

During surgery, a radiation oncologist will place a radioactive iodine plaque directly on the dura (outer covering) of her spinal cord for about 6 minutes. This radiation oncologist actually pioneered this technique; very few other hospitals are using this technique for spinal tumors. There is a chance that the dura will tear during surgery, in which case they won’t be able to use the plaque treatment (and won’t be able to go in at a later time to do it either.) The doctors think there are cancer cells directly on the dura of her spinal cord, so we are certainly hoping that they are able to do the treatment.

They will do pathology tests after surgery to determine what percentage of cancer cells are still viable, which will indicate how responsive her cancer has been to the chemo and radiation. Doctors will determine how much radiation and chemo she will need after surgery based on the pathology results. They are estimating 2 more weeks of radiation after she’s recovered from surgery.

As usual, Rachel didn’t clear the methotrexate after 72 hours. They checked again this morning and it was still 0.1 when it needs to be less than 0.1. The doctor said that her creatinine level – while still in the normal range – is rising, which is an indicator that her kidneys are “not happy” and recommends that Rachel stay in the hospital for most of today getting more fluids and more of the medicine that helps her kidneys. They rechecked at 4pm and we left the hospital around 6:30pm.

Rachel also has painful rashes on her hands and feet, caused by the methotrexate. They called in a dermatologist to see her today, but there wasn’t much she could do for her. She just recommended using Vaseline and thick socks on her feet. A nurse wrapped her hands in gauze to help protect them a bit; it helped a little.

Rachel was really sad and emotional today, not being able to go home, plus the painful rashes. She’s barely been out of the hospital at all since the middle of March, with the unexpected hospitalization for the mouth sores. It’s really starting to get to her – which is really hard to watch. 😦

One of the nurses and a child life staffer tried to cheer her up by giving her a ride in one of the little wagons for the little kids – Rachel’s so tiny that she fits, no problem.