Sean took Charly up for her chemo visit today. Apparently, the doctor commented on Charly's ability to retain her hair. Her new growth has been hanging on, and I have been privately wondering when it will decide to fall out. Charly's blood tests show that her immunity levels have decreased from last week, but the doctors warned us this would be the case. Apparently, her levels weren't as low as they anticipated, and they decided they wouldn't schedule a home health nurse to come visit next week to draw blood and check her levels Christmas week. Charly's next chemo visit is January 3rd. She starts a new phase. They will give her a lumbar puncture and a round of chemo through her port. Then they will leave her port accessed and send her home. That means the tube that they use to administer the chemo will remain in her port, covered by Tegaderm - a clear, Saran Wrap-like material. Home health will come to our house the next 3 days, and will administer chemo through her port at home. I'm not looking forward to Charlotte's reaction to going home with her port accessed. She probably will not be very happy. If I read the chart correctly, they do that twice in this next phase.
Charlotte was starving when she got home. She's back on steroids this week, and the nurses told Sean that we will need to feed her high calorie meals. I prepared a roast for the crockpot the night before and had it ready for Sean to put it in the crockpot in the morning (it gets done too early if I turn it on when I leave for work). Charly wouldn't wait for the Yorkshire puddings in the oven, so I dished carrots, potatoes and roast beef up for her to start eating without us. She finished up her carrots and potatoes, handed me her plate and asked for more. She also told me to put gravy on her roast. I put the gravy on her roast, gave her more veggies, and she started crying. Apparently "roast" was her potatoes, NOT the meat.
She cried for 10 minutes. Even though I quickly made her an entirely new plate of food, prepared like she wanted it, she kept crying. She said she didn't know why she was crying. I do! Steroids! She calmed down enough to demand I give back the potatoes and carrots that were on her old plate. A disturbing physical reaction that Charlotte has developed from the first week of chemo is that she turns bright blotchy red when she's upset. It looks like she is having an allergic reaction and is breaking out in hives. Along with being disturbing, it's a little fascinating. If any of you happen to witness this phenomena, I would say you shouldn't worry, it goes away when she stops being anxious. After she calmed down, she ate her dinner and climbed in my lap. She was a little tired so she sat in our bed with Sean, reading some books while Naomi and I cleared up dinner. An hour later, she demanded Triscuits. It looks like Charlotte will be doing pretty good for Christmas, maybe just a little tired and a lot hungry.
Thursday, December 20, 2012
Thursday, December 13, 2012
Looking Good!
Today, Charlotte had her third chemo appointment in one week. Since it was a 2:00 appointment, and I had a work errand to run in Salt Lake, I took Charly to Primary's for her appointment.
First, Charly demanded we stop at McDonald's for a Big Mac, since she was STARVING! Sean overheard this and protested that he fed her a peanut butter sandwich less than an hour before. Charly glanced over her shoulder to inform him that was just a snack, and NOT her lunch. So on the way up, we got her a Big Mac. When she heard me order a kids meal too, she started shouting and crying from the back seat - NO, Mom! I wanted a Big Mac and they don't come in kids meals! I turn around and see tears streaming from her eyes. After I explained that the kids meal was for me, and that I bought her a Big Mac, she calmed down. Steroids. Thankfully, her last dose for a week was today.
Charlotte happily munched on her Big Mac while I drove up to the See's Candy outlet. Every year, my work gets thank you gifts of chocolates to our key contacts. I love to volunteer to pick up the candy. In year's past, I would always get a certificate at the discounted price and then go to a regular See's chocolate shop so I could bring a custom-packed 1-pound box of chocolate-covered cherries and the cherry nougat chocolates to my dad for Christmas. Even though dad is gone, I like to go up and get a couple treats. We added a 2-lb box of chocolates for the staff at the oncology clinic to our purchase, and Charlotte gave me "the look". I told her she could pick something out for herself. I thought she'd snag one of those candy canes with a penguin puppet on top, but she immediately beelined to a golden bag of chocolate covered coins. We paid for our order, loaded 200 pounds of chocolate into my car, and headed up to Primary Children's.
Charlotte received a cocktail of 2 different chemo drugs today. The same ones she received last Thursday. Her cold seems to be improving, and her doctor says her levels look awesome! They warned me again that they WILL drop significantly later in the month, but for now she is to have no restrictions. They also said this chemo would make her hair fall out. So Charly is going to lose her all the little fuzz she just grew. After this, then she will be done with the meds that cause her hair to fall out. Her next appointment is next Thursday, and I think it's the last one for the month. She'll have nothing until January 3rd, where she starts her next phase. As always, it starts with a lumbar puncture. They will be returning to the Methotrexate, and we will see if she will tolerate it without seizures.
I asked about the family Christmas party on Saturday, and the oncologist said if she feels up to it, she can go. While she was getting her chemo, Charlotte painted a wooden donkey. It happily consumed the 90 minutes we were there. A child life specialist approached me and asked about how many siblings Charlotte had. I told her about Naomi, and she said they received a large donation of pajamas for the patient's siblings, because many siblings feel forgotten and left out. She gave me a pair of Carters cupcake pajamas for Naomi. They were very cute, but I wondered if they would fit. When Naomi received them she decided to wear them to bed that night. They fit on the pants, but her arms are little long. Naomi was still pleased to be thought of.
Charlotte and I were done by 5pm, and heading home. She asked if we could stop by a drive through for dinner, but I didn't want to do two fast food meals in one day. I texted Sean and told him to take Naomi out for dinner tonight, and Charlotte and I invited ourselves to dinner at my mom's house because she said she was baking bread. We enjoyed fresh baked bread and a bowl of soup for dinner and chatted with mom for an hour. When we got home, Sean and Naomi were just returning from a shopping trip to Walmart and dinner at Paradise Cafe. The evening ended with a couple chapters of Pippi Longstocking and a request for a couple slices of bacon before she brushed her teeth. Overall, I would consider it a successful day.
First, Charly demanded we stop at McDonald's for a Big Mac, since she was STARVING! Sean overheard this and protested that he fed her a peanut butter sandwich less than an hour before. Charly glanced over her shoulder to inform him that was just a snack, and NOT her lunch. So on the way up, we got her a Big Mac. When she heard me order a kids meal too, she started shouting and crying from the back seat - NO, Mom! I wanted a Big Mac and they don't come in kids meals! I turn around and see tears streaming from her eyes. After I explained that the kids meal was for me, and that I bought her a Big Mac, she calmed down. Steroids. Thankfully, her last dose for a week was today.
Charlotte happily munched on her Big Mac while I drove up to the See's Candy outlet. Every year, my work gets thank you gifts of chocolates to our key contacts. I love to volunteer to pick up the candy. In year's past, I would always get a certificate at the discounted price and then go to a regular See's chocolate shop so I could bring a custom-packed 1-pound box of chocolate-covered cherries and the cherry nougat chocolates to my dad for Christmas. Even though dad is gone, I like to go up and get a couple treats. We added a 2-lb box of chocolates for the staff at the oncology clinic to our purchase, and Charlotte gave me "the look". I told her she could pick something out for herself. I thought she'd snag one of those candy canes with a penguin puppet on top, but she immediately beelined to a golden bag of chocolate covered coins. We paid for our order, loaded 200 pounds of chocolate into my car, and headed up to Primary Children's.
Charlotte received a cocktail of 2 different chemo drugs today. The same ones she received last Thursday. Her cold seems to be improving, and her doctor says her levels look awesome! They warned me again that they WILL drop significantly later in the month, but for now she is to have no restrictions. They also said this chemo would make her hair fall out. So Charly is going to lose her all the little fuzz she just grew. After this, then she will be done with the meds that cause her hair to fall out. Her next appointment is next Thursday, and I think it's the last one for the month. She'll have nothing until January 3rd, where she starts her next phase. As always, it starts with a lumbar puncture. They will be returning to the Methotrexate, and we will see if she will tolerate it without seizures.
I asked about the family Christmas party on Saturday, and the oncologist said if she feels up to it, she can go. While she was getting her chemo, Charlotte painted a wooden donkey. It happily consumed the 90 minutes we were there. A child life specialist approached me and asked about how many siblings Charlotte had. I told her about Naomi, and she said they received a large donation of pajamas for the patient's siblings, because many siblings feel forgotten and left out. She gave me a pair of Carters cupcake pajamas for Naomi. They were very cute, but I wondered if they would fit. When Naomi received them she decided to wear them to bed that night. They fit on the pants, but her arms are little long. Naomi was still pleased to be thought of.
Charlotte and I were done by 5pm, and heading home. She asked if we could stop by a drive through for dinner, but I didn't want to do two fast food meals in one day. I texted Sean and told him to take Naomi out for dinner tonight, and Charlotte and I invited ourselves to dinner at my mom's house because she said she was baking bread. We enjoyed fresh baked bread and a bowl of soup for dinner and chatted with mom for an hour. When we got home, Sean and Naomi were just returning from a shopping trip to Walmart and dinner at Paradise Cafe. The evening ended with a couple chapters of Pippi Longstocking and a request for a couple slices of bacon before she brushed her teeth. Overall, I would consider it a successful day.
Monday, December 10, 2012
"Peg" shot
Today was Charly's "Peg" shot. Sean took her up to the oncology clinic at Primary Children's. Her appointment was at noon. It took 2 hours for the medicine to arrive, an hour to deliver the medicine via Charlotte's port, and they wished to observe Charly for an hour before they would let her go home. When I got home at 3, they were still not home. Primary Children's has lousy cell phone reception. All the nurses/doctors travel around with these weird Vocera devices that allow them to communicate with one another while in the hospital. There are only a few areas that you can get reception, and the oncology clinic is NOT one of those places.
I've been debating that I may have developed a sinus infection - I'm lucky to usually get one after I start getting sniffily. I decided to call my GP, and he squeezed me in for an appointment at 4:15. I had 30 minutes to whip together a lasagna, and took off to the doctor's office. The doctor came into the room, and asked how I was doing. He's aware of what's going on with Charlotte, and this is the first time I've seen him since she's been diagnosed. He asks if I'm eating healthy, exercising, etc. I told him exercising has been put by the wayside lately. With this stupid cold, I've slept in the last 2 Saturday mornings, and Charly's home school is usually in the afternoon, when I used to try to squeeze in time on my elliptical. It's been 2 weeks since I found time to work out. He looked at me and told me to find something I could watch while I was on the elliptical and to make sure I exercised. He wrote me a script for an antibiotic, and I was on my way. On the way home, I kept calling Naomi to ask her to turn on the oven and put the lasagna in. She was playing in the snow with friends. Sean called me at 4:45 to tell me they were finally on the way home. I stopped to drop off my Rx and to get french bread to go with dinner. By the time I get home, Sean's already been there 10 minutes, and Naomi never ran home to turn on the oven and put in dinner. Charlotte apparently hadn't eaten lunch before going to the clinic and was starving. I cut off a slice of bread for Charlotte and made the rest of the loaf into garlic bread. By the time dinner was ready... Charlotte wouldn't eat. Dang it. Charly's next appointment is this Thursday at 2pm. I told Sean that I would try to leave work early and take her.
Charlotte's cold has her coughing a lot, especially in the early morning. So far, no fever. While my colds usually end up as sinus infections, Charly's have always seemed to linger in her chest.
I've been debating that I may have developed a sinus infection - I'm lucky to usually get one after I start getting sniffily. I decided to call my GP, and he squeezed me in for an appointment at 4:15. I had 30 minutes to whip together a lasagna, and took off to the doctor's office. The doctor came into the room, and asked how I was doing. He's aware of what's going on with Charlotte, and this is the first time I've seen him since she's been diagnosed. He asks if I'm eating healthy, exercising, etc. I told him exercising has been put by the wayside lately. With this stupid cold, I've slept in the last 2 Saturday mornings, and Charly's home school is usually in the afternoon, when I used to try to squeeze in time on my elliptical. It's been 2 weeks since I found time to work out. He looked at me and told me to find something I could watch while I was on the elliptical and to make sure I exercised. He wrote me a script for an antibiotic, and I was on my way. On the way home, I kept calling Naomi to ask her to turn on the oven and put the lasagna in. She was playing in the snow with friends. Sean called me at 4:45 to tell me they were finally on the way home. I stopped to drop off my Rx and to get french bread to go with dinner. By the time I get home, Sean's already been there 10 minutes, and Naomi never ran home to turn on the oven and put in dinner. Charlotte apparently hadn't eaten lunch before going to the clinic and was starving. I cut off a slice of bread for Charlotte and made the rest of the loaf into garlic bread. By the time dinner was ready... Charlotte wouldn't eat. Dang it. Charly's next appointment is this Thursday at 2pm. I told Sean that I would try to leave work early and take her.
Charlotte's cold has her coughing a lot, especially in the early morning. So far, no fever. While my colds usually end up as sinus infections, Charly's have always seemed to linger in her chest.
Thursday, December 6, 2012
Beginning Delayed Intensification
Sean took Charly to her clinic visit today. I was traveling to Kansas City for my last business trip for the year. Charly's sniffles have developed into a cold. One evening, we thought we might have to bring her into the ER, as her temperature hovered by the 100.3 level. If she stays at 100.3 for an hour, we are to call and bring her in. If she hits the 101 level, we are to call and bring her in right away. From my understanding, they test her blood to try and identify if she is suffering from an infection. If she is, they give her IV antibiotics. If her levels are good, they tell me she will be allowed to go home. If her levels are concerning to the oncologist on call, they will admit her to stay at the hospital.
As of her visit yesterday, the doctors say we are to continue watching her. They don't want to give her antibiotics unless it looks like it is an infection. Right now, it looks like a cold virus. They don't stop chemo for a cold. So yesterday, Charlotte received another lumbar puncture, this time using the alternate chemo in her spinal fluid. Sean was given prescriptions for two different steroids - one of these pills will apparently change her pee to red. I appreciated the warning, I don't want a repeat of the beet episode.
Charly will go 7 days on steroids, and 7 days off for the next month. She also received doses of the chemos "Vincristine" and "Doxorubicin" through her port. They are having us return Monday for another chemo called "PEG" for short. Apparently, Monday's chemo will require them to observe Charlotte for an hour after their dosage. After that, we only have weekly chemo visits scheduled for the rest of the month. I know from my last visit, they are predicting Charlotte's levels will drop at the end of the month. they will probably schedule a home health nurse to visit and check her blood during that time. I'm praying she kicks her cold before she gets to that point, so she doesn't develop a secondary infection. That's my Christmas wish.
As of her visit yesterday, the doctors say we are to continue watching her. They don't want to give her antibiotics unless it looks like it is an infection. Right now, it looks like a cold virus. They don't stop chemo for a cold. So yesterday, Charlotte received another lumbar puncture, this time using the alternate chemo in her spinal fluid. Sean was given prescriptions for two different steroids - one of these pills will apparently change her pee to red. I appreciated the warning, I don't want a repeat of the beet episode.
Charly will go 7 days on steroids, and 7 days off for the next month. She also received doses of the chemos "Vincristine" and "Doxorubicin" through her port. They are having us return Monday for another chemo called "PEG" for short. Apparently, Monday's chemo will require them to observe Charlotte for an hour after their dosage. After that, we only have weekly chemo visits scheduled for the rest of the month. I know from my last visit, they are predicting Charlotte's levels will drop at the end of the month. they will probably schedule a home health nurse to visit and check her blood during that time. I'm praying she kicks her cold before she gets to that point, so she doesn't develop a secondary infection. That's my Christmas wish.
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