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…