They’ve scheduled Rachel appointments in Boston on Tuesday with the radiation oncology team. Since she keeps having trouble clearing the methotrexate, they decided to start the chemo today instead of tomorrow to make sure it clears in time for her to make the appointment on Tuesday.

Rachel got another dog visit today. 🙂

 

 

Rachel’s methotrexate level was okay this morning so she was cleared to go home.

We got a call from the oncologist in Boston this evening. Now they are saying they want to do 5 weeks of radiation up front, 4-5 weeks of recovery, then surgery, another 3-4 weeks of recovery, followed by 1-2 more weeks of radiation. We are more confused than ever. Yesterday none of the doctors wanted to put off surgery past June and now they’re all saying putting it off until July/August is just as good and will allow Rachel to attend both prom and graduation. While we’re grateful that she’ll be able to attend graduation, we’re wondering why the change from yesterday and is this really the best approach as far as a cure is concerned?

We’re still waiting for a start date for radiation, but they said probably in 2-3 weeks.

Preliminary MRI results showed improvement.

It was starting to sink in for Rachel that she’ll miss graduation; she was really upset today. 😦

Methotrexate level once again came back at the same frustrating 0.11 at 9:45pm so she couldn’t go home tonight, adding yet another frustration to her emotional state. They will check again tomorrow morning.

Rachel started another round of high-dose methotrexate today. One of the oncologists just came in and said that they’ve heard from Boston and that she needs to choose between prom and graduation – that they want to schedule the surgery May 31, which would mean missing graduation. Rachel said that if she had to choose between the two, she’d rather go to prom. The surgeon did get approved to use carbon fiber supporting hardware in her spine, though, so that’s great news. Carbon fiber is won’t mess with future imaging scans or radiation treatments and will also hold up against chemo treatments better than traditional titanium. They want to do 2 weeks of radiation prior to surgery.

Rachel also had a follow-up CT scan of her lungs today to make sure the cancer hasn’t spread. Preliminary results show nothing in her lungs. She is scheduled for another MRI tomorrow.

We are all so thankful that Rachel recovered quicker than the doctors originally thought and that she was able to be home to celebrate Easter with us today.

We had our traditional breakfast treat of cinnamon rolls, followed by the girls and Nick going on the Easter candy hunt (we do candy and not eggs in our family) for all the candy that I hid the night before.

Mike and Robin came over late morning and my mom, Fern, had come down for the holiday and was staying with us. None of us felt like cooking the big traditional meal so we just made some yummy appetizers and dips and enjoyed those throughout the day.

Rachel’s counts were up a lot today, including her white count. Her sores are clearly healing (though still bad.) Her doctor surprised her with the option of going home today or staying and getting another day of fluids in the hospital. He knows her well enough by now that she’ll choose to go home as soon as possible, every time

Rachel’s pain was somewhat less today, but her hemoglobin and platelets were still declining so they gave her more transfusions. Her white count was up slightly. Doctor wasn’t sure whether it was a fluke or if it means it’s actually starting to recover; we’ll be able to tell tomorrow when they check again. She had another allergic reaction to the platelets, even with Benadryl and infusing at the slowest rate (over 4 hours.) They ended up not being able to finish the whole bag because there’s a 4-hour time limit on the infusion and they had to stop it because of the reaction.

Her primary oncologist was the doctor working today. He thought it wouldn’t be before the weekend before she can go home – Saturday or Sunday. Maybe later if her counts keep dropping.

Still no definite treatment plan from Boston but they have at least decided that they want to do some radiation before surgery – probably 2 weeks of it.

Today was a really rough and emotional day for Rachel. 😦

Rachel got another nosebleed around 12:30am so the nurse called to see if she could get the platelet transfusion sooner. They started that around 1:20am. It also wasn’t her blood type, so I think she got the last bag in the hospital and not one from the new shipment that was arriving.

She continued to get more fluids, antibiotics, and morphine throughout the day. They gave her a mouth rinse that had numbing medicine in it to try; it helped maybe for a few seconds and then just made her mouth taste weird.

The doctor guessed maybe Friday or Saturday for discharge. She needs to have no more fevers, white counts need to be clearly on the rise, and mouth sores need to be improved enough that she can eat and drink when she gets home.

Rachel was more alert today but still in pain.

Rachel has had awful mouth sores and over the weekend her mouth started swelling. She wasn’t able to really eat much of anything and was feeling really down and having a lot of anxiety about eating since she’s so tiny already. She thought they might be getting a little better so we didn’t call the doctor.

This morning her face was a lot more swollen. We had an in-home nurse visit already scheduled to draw labs to check her blood counts. The nurse noticed that she had a fever of 100.6. The doctor’s office said to come right in.

When we got to the doctor’s office, Rachel was so weak that she needed assistance getting up out of the car and into a wheelchair that was right next to her. This was really tough to watch my daughter – whose favorite outdoor activity is to hike mountains – be so weakened by the treatments for this horrible disease.

By the time we got to the doctor’s office, they had already received the results of her blood test. All of her counts were very low; she needs both a blood transfusion and a platelet transfusion and her white count is basically 0. Given that she had a fever and no white count, they wanted to admit her to the hospital.

They had her hang out at the doctor’s office getting fluids, antibiotics, and morphine while waiting for a hospital bed. Her fever rose to over 103 so they gave her Tylenol to bring the fever down and make her feel better. Normally she’s not allowed to have Tylenol because it masks a fever, but since they already know she has one and she’s feeling miserable with a temperature over 103, they thought it better to give it. They decided to wait and give the transfusions at the hospital because she’d get them sooner than waiting for them at clinic.

There were no beds available in the pediatric wing so she’s in the adult oncology section of the hospital for the first time. Definitely not as cheerful in this unit, not as much attention from the nurses (because they each have more patients to take care of.) The room is bigger though, so at least there’s that.

Around 7pm the nurse came in and told us that there’s only one bag of platelets left in the whole hospital so they’re making her wait for the 1am shipment because though she “urgently” needs it, she doesn’t “emergently” need it. If she was actively bleeding right now they’d give it to her. Of course, it would be the one time today her nosebleeds stop. They decide to give her the blood transfusion first, which they just started a little bit ago. Even that wasn’t her blood type (obviously it was a compatible one), so the blood bank must be really running low tonight. Her mouth sores can’t really start to heal until her platelet count goes up, so all these delays are really frustrating.

Morphine isn’t really helping the mouth sores at all. If you’ve ever had a tiny canker sore in your mouth and know how painful that is, imagine your entire mouth covered in giant ones of those that are swollen and infected and then you’d have some idea what she’s going through. Add to that a fever and low red blood cells so you feel sick and completely exhausted, being underweight and can’t eat due to pain…

We got home from the hospital tonight around 8:30pm. Rachel’s feeling really tired and pretty nauseous. She’ll probably be feeling nauseous from the cisplatin for about 10 days or so, if the past is an indication.