29th Day Appointment



Ice cream and a blood transfusion

 Today was the 29th day appointment, which included another lumbar puncture and a bone marrow aspirate. We will hear the results next week - probably Wednesday. Today also marks the end of the steroids. Hooray! The steriods have so many bad side effects. The bone pain, the acid reflux, water retention, high blood pressure, and the constant craving for food. It was my guess that Charly gained about 10 pounds, today's appointment showed she has gained 7 pounds since last week. It will be nice to see Charlotte not be so desperate for food. She has been constantly ravenous.

Since she was having surgery today, we were told she couldn't eat after midnight. After some discussion, Sean decided to wake Charlotte up to eat before the cut off time, in order to soften the blow. Charly has been getting up 2-3 times a night for snacks. Usually a slice of toast and a glass of milk. Thankfully, she is old enough to understand it was very important she NOT eat without mom and dad saying it would be okay. If she wasn't so good about obeying, I would have had to sleep on the kitchen floor to stop any midnight snacking.

Our clinic time was at 10:30. They took her blood and ran some tests, but no chemo today. Then Charly and I went downstairs at 12:30 for her surgery. The entire procedure took less time than it took me to run to the pharmacy at the other end of the hospital and order a refill on her antibiotics. Since they said it would take 20 minutes to fill, I decided to go back rather than wait. I stepped outside to call Sean to warn him we would be late because they wanted to give Charly a blood transfusion (I have no cell coverage in the hospital). I detoured for 2 minutes for an apple and a Dr. Pepper at the cafeteria.

By the time I was back, Charlotte was awake again and chowing down on a bag of Doritos like her life depended on it. Being refused food had already resulted in tears multiple times this morning. Thank goodness for the book of mazes and dot to dot puzzles that the McCune's dropped off. She spent time puzzling them out to take her mind off her hunger. Doritos were followed by a snack pack of Oreos. Then a walk back to the oncology unit for more blood. Thankfully, Charlotte was allowed to order a tray from room service. She snapped at everybody who tried to talk to her. Recent history assured me that once she got something to eat, she'd be her pleasant self again. After Kraft Mac 'n' Cheese, broccoli, and mashed potatoes, her equilibrium was almost restored. Hearing the boy next to us order an ice cream cone, she also asked for a cone as well as cheese and crackers. Then she wanted a soft pretzel, but the nurse apologetically told her that they could only ask for 2 trays from the kitchen per patient. The nurse went to get her a bag of crunchy pretzels from their snack station, Charlotte started to cry quietly and vehemently whispered, "why didn't you warn me that was my last tray?"

Usually, the doctor explained to me, they wait a few weeks after the patient has successfully finished the induction phase of chemo before they start on the consolidation phase. To know if we are ready for consolidation, Charlotte's lumbar puncture and bone marrow aspirate figures have to be where they want them to be. If they aren't, we may continue the induction phase of chemo for a few more weeks. Also, the doctor warned, if her counts ARE where they want them, usually the patients need some time to recoup and get their immune system back up before they can start consolidation. That's when the nurse brought in the most recent blood counts. The doctor's eyebrows raised to see her ANC levels at 3400. "Wow, if she continues to be this good, we may start consolidation without any recouperation time!"

Her hemoglobin was low again, so they ordered another blood transfusion and gave her a drug called Lasik because her salt levels were low. With the water rentention from the steriods, they said that was normal, but the Lasik will help her get rid of the extra water. The clinic staff warned me that she would be needing to use the bathroom frequently the next few days. Heeding the warning, we made sure to take a potty stop right before we left. Of course, half-way home Charlotte whimpers that she needs to go right NOW! At the same moment, I pass the last exit on 215 until I get onto I15 and the traffic is all red lights. I start pleading with Charly to hold it for just a few more minutes, and yelling at traffic to MOVE!! We were moving nowhere. I told Charly if she couldn't hold it, I wouldn't tell anyone. There really was nowhere safe to pull off and let her go on the road side. I finally get to a gas station, pick up my girl and run through the front doors "BATHROOM!!!!" The teenager behind the counter points the direction, and the ladies room is occupied. I head for the men's room and the door is locked! I had to run back, juggling my baby to grap the nasty key from the previously mentioned dimwit behind the counter. We made it. All I can think was how nasty it was we were in a gas station restroom with my immunocompromised daughter. YUCK!

We finally made it home just before 5:30. Charlotte and I are wiped. I sat down and ate the apple I never had a chance to eat earlier. I was so GRATEFUL when the doorbell rang and our sweet neighbor brought us dinner. Charlotte ate and is now passed out in bed.

Love to all. I will let you know when we hear the results.