This morning, I took Kayla back in to the audiologist to do a little more testing in the higher range sounds. There was another audiologist there who helped out with Kayla in the sound booth, making things a little more fun.
Kayla and I went in to a sound booth with the one doctor and the other stayed in the other room. Kayla wore headphones and listed for high soft bird tweeting sounds. The doctor in the booth with us had a small hard foam square with holes in it. Each time Kayla heard a sound, she got to put a little peg toy into one of the holes.
Kayla did fantastic. She only missed a couple of super high soft sounds in her right ear, but it is nothing that is concerning. If hearing is affected by chemotherapy, the damage is first in the upper ranges, then in normal speaking ranges. Kayla did so well, that the audiologist did not think there had been any damage.
But, she does what Kayla to come back in two months, then again after her treatments are done, then again six months after and from then on once a year. Sometimes side affects don't present themselves until later, so she wants to keep an eye on it. Okay. . . another doctor to follow up with.
And that was that. The whole thing took about a half hour and we were on our way home. Miss Sadie slept the whole time, thankfully, and Benson was at another friend's house.
Thursday, February 28, 2013
Tuesday, February 26, 2013
February 26th - Week 43 . . . Take One
So, it was quite a treat last week to not have to go in to the clinic. I had five whole days to get things done! It was great! :) And that counted as our 42nd week. Nice.
Today we went to the clinic to start her next 6 week cycle. Kayla was up, dressed, had her bag packed and her teeth brushed by the time I got out of bed. Which wasn't that late. . . still before 7AM. :) But, for the past few nights, I'd been up several times with different kiddos and had not gotten much sleep.
We dropped Benson off at another friend's house (one he hadn't been to before) and headed to Boise. Kayla did great, as usual, getting checked in and accessed (although, she STILL won't stand on the scale alone).
We met with Marnie, nurse Heather and a BSU nursing student. When Marnie came in she asked if I wanted to guess what Kayla's counts were. I just hoped they were high enough! But. . . nope. Her neutrophils were 2430, which is great! But her platelets were 85 and they need to be 100. Bummer! I was especially hoping that she would make counts today because my sister is getting married the end of March and her next two off weeks would fall right at the wedding. But, now if she starts next week, she will have chemo that Tuesday before the wedding. Which. . . will be fine.
So, the visit with Marnie went well. In fact, Kayla ended up making great friends with the BSU nursing student! It was hilarious! Kayla started playing and talking to her. Marnie said, "I can count how many words she's said to me on one hand!" And here this student was fast friends with Kayla. Marnie wasn't too offended, though. :)
We spent a little while talking with the nurses and staff on our way out. Since we hadn't been in last week, it felt like we hadn't seen them for awhile! I just love everyone there and will miss it when we don't have to go anymore.
On our way out, Miss Jenn let Kayla pick out two cute blankets that were knitted and donated. One for Kayla and one for Lily. There is always a basket full of things for the kids. I need to come up with something that I can make and donate. . .
Today we went to the clinic to start her next 6 week cycle. Kayla was up, dressed, had her bag packed and her teeth brushed by the time I got out of bed. Which wasn't that late. . . still before 7AM. :) But, for the past few nights, I'd been up several times with different kiddos and had not gotten much sleep.
We dropped Benson off at another friend's house (one he hadn't been to before) and headed to Boise. Kayla did great, as usual, getting checked in and accessed (although, she STILL won't stand on the scale alone).
We met with Marnie, nurse Heather and a BSU nursing student. When Marnie came in she asked if I wanted to guess what Kayla's counts were. I just hoped they were high enough! But. . . nope. Her neutrophils were 2430, which is great! But her platelets were 85 and they need to be 100. Bummer! I was especially hoping that she would make counts today because my sister is getting married the end of March and her next two off weeks would fall right at the wedding. But, now if she starts next week, she will have chemo that Tuesday before the wedding. Which. . . will be fine.
So, the visit with Marnie went well. In fact, Kayla ended up making great friends with the BSU nursing student! It was hilarious! Kayla started playing and talking to her. Marnie said, "I can count how many words she's said to me on one hand!" And here this student was fast friends with Kayla. Marnie wasn't too offended, though. :)
We spent a little while talking with the nurses and staff on our way out. Since we hadn't been in last week, it felt like we hadn't seen them for awhile! I just love everyone there and will miss it when we don't have to go anymore.
On our way out, Miss Jenn let Kayla pick out two cute blankets that were knitted and donated. One for Kayla and one for Lily. There is always a basket full of things for the kids. I need to come up with something that I can make and donate. . .
Wednesday, February 20, 2013
February 14th - Hearing Test
Happy Valentine's Day! Kayla's hearing test got scheduled for the special day. ;) Luckily, there was a place in Nampa that we could go to, so we didn't have to drive all the way into Boise again. The night before, at about 9:15PM I had the thought that I probably shouldn't take Benson with us. He is a pretty good little boy, but he is at that stage where he is constantly talking. Where this was going to be a hearing test, I was thinking that it would be hard to keep him quiet. So, I called a good friend who said she could watch him the next morning. Thanks!!!
It was a good think that we did not bring Benson! Kayla did fantastic for the hearing test. I was thinking that it would be a quick one where you just put on the headphones and raise your hand when you hear the beep and that would be it. But, we met with an Audiologist and she did a very in-depth test. We were there for an hour. By the end, Kayla was getting tired, so the doctor scheduled her to come back one more time, just so she could do a little more testing. Kayla did fabulous and tested great, but on some of the really high tones, she was not doing as well. So, we are going back in a couple weeks to retest some of those high pitches. The really high sounds are the ones that are affected by the chemo first. Had Kayla been just a normal kid, her results would be perfectly well. But, since she is doing chemotherapy, the doctor wants to be sure and double check some of those upper ranges.
The doctor was super nice and was great with Sadie while I sat in the sound booth with Kayla for a while. Once she got fussy, I held her and Kayla, and and did my best to keep Sadie quiet while Kayla did her testing. It worked. :)
It was a good think that we did not bring Benson! Kayla did fantastic for the hearing test. I was thinking that it would be a quick one where you just put on the headphones and raise your hand when you hear the beep and that would be it. But, we met with an Audiologist and she did a very in-depth test. We were there for an hour. By the end, Kayla was getting tired, so the doctor scheduled her to come back one more time, just so she could do a little more testing. Kayla did fabulous and tested great, but on some of the really high tones, she was not doing as well. So, we are going back in a couple weeks to retest some of those high pitches. The really high sounds are the ones that are affected by the chemo first. Had Kayla been just a normal kid, her results would be perfectly well. But, since she is doing chemotherapy, the doctor wants to be sure and double check some of those upper ranges.
The doctor was super nice and was great with Sadie while I sat in the sound booth with Kayla for a while. Once she got fussy, I held her and Kayla, and and did my best to keep Sadie quiet while Kayla did her testing. It worked. :)
February 11th - Week 41
On Monday, we went to the clinic for Kayla's first off week in this cycle. Since it was going to be a shorter day, I decided to bring Benson along with us. Even though he doesn't come very often, most of the nurses and staff know him by name.
We met with Dr. Chang, who we haven't met with since Kayla was in the hospital and initially diagnosed. She looked through Kayla's chart and asked different questions. She also commented on how well Kayla looks and how much she has grown since that initial hospitalization. Dr. Chang asked me if we liked coming in on all her off weeks. Uh. . . I just do what I'm told! :) She told me that since Kayla has always done well on her first week off that we could probably just come in on the second off week. I guess we'll see. It always depends on who we are meeting with that week before. But, she said that unless Kayla had a fever or significant bruising due to low platelets, we didn't need to come in next week! Wow, our first true week off in 10 1/2 months! In some ways, I like going in every week, because I hold my breath from week to week that Kayla won't get sick and that everyone in the family will stay healthy. Going two weeks seems almost harder because it will be longer in between doctor visits where someone will reaffirm to me that she is still healthy and doing great.
Dr. Chang also asked me if Kayla had had a baseline hearing test. I told her no, so she ordered the test. It has been mentioned a few times over the past few months, but no one ever said to go do one for sure. They like to get a hearing test at the beginning of treatment and at the end. This way they can check and make sure the chemo has not affected any hearing capabilities. Even though we are two-thirds of the way through, we'll still get the test done now and then at the end.
So, we got to go into the chemo suite for a little while. Kayla got Pentamidine (the antibiotic). It took about an hour. So, she and Benson watched a little Monster's Inc. and did some watercolor painting.
And we got home right about lunch time. Another week down!
We met with Dr. Chang, who we haven't met with since Kayla was in the hospital and initially diagnosed. She looked through Kayla's chart and asked different questions. She also commented on how well Kayla looks and how much she has grown since that initial hospitalization. Dr. Chang asked me if we liked coming in on all her off weeks. Uh. . . I just do what I'm told! :) She told me that since Kayla has always done well on her first week off that we could probably just come in on the second off week. I guess we'll see. It always depends on who we are meeting with that week before. But, she said that unless Kayla had a fever or significant bruising due to low platelets, we didn't need to come in next week! Wow, our first true week off in 10 1/2 months! In some ways, I like going in every week, because I hold my breath from week to week that Kayla won't get sick and that everyone in the family will stay healthy. Going two weeks seems almost harder because it will be longer in between doctor visits where someone will reaffirm to me that she is still healthy and doing great.
Dr. Chang also asked me if Kayla had had a baseline hearing test. I told her no, so she ordered the test. It has been mentioned a few times over the past few months, but no one ever said to go do one for sure. They like to get a hearing test at the beginning of treatment and at the end. This way they can check and make sure the chemo has not affected any hearing capabilities. Even though we are two-thirds of the way through, we'll still get the test done now and then at the end.
So, we got to go into the chemo suite for a little while. Kayla got Pentamidine (the antibiotic). It took about an hour. So, she and Benson watched a little Monster's Inc. and did some watercolor painting.
And we got home right about lunch time. Another week down!
Sunday, February 10, 2013
Little Cuties
I thought I'd share a few pictures I've taken lately. I guess I need to get more of the older two!
Benson loves to help make pancakes.
We crashed a preschool field trip with some friends to the fire station. Here is Benson in the fire truck.
All ready to play in the snow! (Uh. . . don't mind the princess boots)
Miss Sadie. . . at almost 4 months old. . . and this dress is size 12 months!
Time to sleep. . .
Friday, February 8, 2013
February 5th - Week 40
Wow! Kayla is officially two-thirds of the way through her treatment! In some ways, it has flown by, but in many others, it has been a LONG HAUL. :)
The morning getaway wasn't quite as smooth . . . everyone (including Benson and Sadie) was awake by 6:30AM. That made it more difficult to get ready and get everything packed up for the day and be out the door before 8:45AM. I should really do better about getting ready the night before. ;) But, we made it. I dropped Benson off at another one of the 10+ friends' houses that he goes to and we went on to Boise.
The nurses at the clinic were especially efficient at getting Kayla's fluids started that day. As soon as she was accessed they hooked her up to the fluids. We met with Marnie again. She examined Kayla and we talked about the new anti-nausea medicine we were trying that day. I still can't remember what it is called, but it is in the same class as zofran, but it lasts for 3 days. Yay! Where has this been for the past 10 months!!! Kayla and I were both pretty excited. : ) Marnie told me at the end of the visit that she was so pleased with how well Kayla has been doing, considering everything she goes through. She has had energy to run and play, her hair is still strong and thick, and she hasn't had any major sickness (knock on wood!) throughout her treatment. I am constantly counting my blessings for how well things have been for her.
The day seemed to go by pretty quickly (especially compared to last week!). Kayla watched part of Monsters Inc, ate lunch, played with the dollhouse, made Valentine's with Miss Jenn for some of the nurses to put in the Valentine's mailbox out on the front desk, and we took walks around the clinic. And that was pretty much it. Time to go home! It was nice not waiting for the extra 2 hours to get a second dose of zofran. We were home by 3PM, right as the bus got there to drop off Nathan and Lily from school.
The best part about the day was not having to battle over zofran that night! Yay! And, that night I got to leave a house full of screaming kiddos (well, not ALL of them were screaming, but it was a little crazy. . . ) with Bryson and go to the temple. It was so nice and peaceful and such a spiritual recharge for me. It was also great to wake up to Kayla NOT throwing up. :) She did great that next day. We were able to go grocery shopping and play and do normal things without her being feeling sick, tired and throwing up most of the day. Hooray!
The morning getaway wasn't quite as smooth . . . everyone (including Benson and Sadie) was awake by 6:30AM. That made it more difficult to get ready and get everything packed up for the day and be out the door before 8:45AM. I should really do better about getting ready the night before. ;) But, we made it. I dropped Benson off at another one of the 10+ friends' houses that he goes to and we went on to Boise.
The nurses at the clinic were especially efficient at getting Kayla's fluids started that day. As soon as she was accessed they hooked her up to the fluids. We met with Marnie again. She examined Kayla and we talked about the new anti-nausea medicine we were trying that day. I still can't remember what it is called, but it is in the same class as zofran, but it lasts for 3 days. Yay! Where has this been for the past 10 months!!! Kayla and I were both pretty excited. : ) Marnie told me at the end of the visit that she was so pleased with how well Kayla has been doing, considering everything she goes through. She has had energy to run and play, her hair is still strong and thick, and she hasn't had any major sickness (knock on wood!) throughout her treatment. I am constantly counting my blessings for how well things have been for her.
The day seemed to go by pretty quickly (especially compared to last week!). Kayla watched part of Monsters Inc, ate lunch, played with the dollhouse, made Valentine's with Miss Jenn for some of the nurses to put in the Valentine's mailbox out on the front desk, and we took walks around the clinic. And that was pretty much it. Time to go home! It was nice not waiting for the extra 2 hours to get a second dose of zofran. We were home by 3PM, right as the bus got there to drop off Nathan and Lily from school.
The best part about the day was not having to battle over zofran that night! Yay! And, that night I got to leave a house full of screaming kiddos (well, not ALL of them were screaming, but it was a little crazy. . . ) with Bryson and go to the temple. It was so nice and peaceful and such a spiritual recharge for me. It was also great to wake up to Kayla NOT throwing up. :) She did great that next day. We were able to go grocery shopping and play and do normal things without her being feeling sick, tired and throwing up most of the day. Hooray!
Sunday, February 3, 2013
January 29th - Week 39
Well, I have been without a computer for a week, so it's been hard to get this post done. Last Tuesday was Kayla's clinic day. It started out pretty smoothly. We had to leave by 8:30AM. I didn't get much ready the night before, but I was able to get the kids off to school and get things packed up for the day pretty easily. Benson was still sleeping at 8:30AM, so we left him home and Bryson dropped him off at another friend's house after he was up and ready for the day.
We made it downtown and to the clinic with only a few bad spots on the road due to the snow, ice, and cold weather. Once we were in the clinic, they got Kayla checked in, accessed and in to see Marnie pretty quickly. They also gave her zofran right away. The plan for the day was to give her zofran as soon as we got there and then give her a second dose before we left. . . six hours from the first dose.
Marnie told us about the discussion on Kayla's case at the Brain Tumor Conference. She explained the thicker part of her optic nerves. . . that was where the remaining part of the tumor was located. There was such a significant decrease in size between the previous two MRI's that there wasn't another significant decrease, but there still isn't much left of the tumor. She told us that everyone at the conference agreed (which is good . . . ) that she is doing great and the treatment is working great, so we will just keep plugging along.
Our day in the chemo suite was LONG. We did have fun, though. Kayla had some music time with Miss Stephanie and Miss Irene, watched a little Snow White, ate lunch, colored, played with the dollhouse, played with play-doh, and went on a few walks around the clinic. They have been doing a lot of construction , so the part of the clinic across from the chemo suite is completely walled off. Kayla had a lot of fun with Miss Jenn and a few other kids there coloring pictures on the wall with markers.
While we were there, I got a call from the allergy clinic that Benson goes to and they had a peanut allergy kit there for us to pick up. It happened to be in their Boise office, so I thought that was convenient since we were there. I told them that we'd pick it up on the way home.
Well, Kayla couldn't have her second dose of zofran until 4:30PM. We took more walks around the clinic. All of the nurses and staff love to hold Sadie and try to get her to smile. :)
When Kayla finally got all done and de-accessed, we headed out the door. I wasn't sure exactly where the allergy clinic was, so we set out driving to where the lady on the phone told me to go. We didn't leave the clinic until about 5PM, so I called the allergy place to see how late they were open. Luckily, they were open until 5:30PM. So, after driving around forever trying to find this place and calling them for a little extra help (which wasn't helpful) I finally found it. We got there right at 5:30PM, got the kit and went to fight the rush-hour traffic.
We got home after 6PM and I was so hungry. It was so nice to have dinner there when I got home! Thank you visiting teachers! Tacos totally hit the spot. :) It was also really nice to not need to worry about getting Kayla to take zofran before going to bed. :)
Kayla did wake up throwing up around 5:30AM. She threw up a few times that morning, but it wasn't too bad, so I wasn't too concerned about getting her to take more zofran, although, I did sneak it in her water that she refused to drink. Oh, well. We survived.
Just a note, I got a call from Marnie that next day and she told me about a drug that is a cousin to zofran, but it is a longer lasting one. . . 3 days! She had already talked to Dr. Hansen about it and he had figured out a dose for Kayla and we are going to try it this next week. That means one dose at the clinic and she is good for 3 days! The only thing is that since it is a cousin to zofran, it has the potential for the same side effects when it is given with pentamidine, so even though Kayla is due for pentamidine this week, we are going to put it of for a week (because next week is an off week and she won't need zofran's cousin - I can't remember the name).
And that is all.
We made it downtown and to the clinic with only a few bad spots on the road due to the snow, ice, and cold weather. Once we were in the clinic, they got Kayla checked in, accessed and in to see Marnie pretty quickly. They also gave her zofran right away. The plan for the day was to give her zofran as soon as we got there and then give her a second dose before we left. . . six hours from the first dose.
Marnie told us about the discussion on Kayla's case at the Brain Tumor Conference. She explained the thicker part of her optic nerves. . . that was where the remaining part of the tumor was located. There was such a significant decrease in size between the previous two MRI's that there wasn't another significant decrease, but there still isn't much left of the tumor. She told us that everyone at the conference agreed (which is good . . . ) that she is doing great and the treatment is working great, so we will just keep plugging along.
Our day in the chemo suite was LONG. We did have fun, though. Kayla had some music time with Miss Stephanie and Miss Irene, watched a little Snow White, ate lunch, colored, played with the dollhouse, played with play-doh, and went on a few walks around the clinic. They have been doing a lot of construction , so the part of the clinic across from the chemo suite is completely walled off. Kayla had a lot of fun with Miss Jenn and a few other kids there coloring pictures on the wall with markers.
While we were there, I got a call from the allergy clinic that Benson goes to and they had a peanut allergy kit there for us to pick up. It happened to be in their Boise office, so I thought that was convenient since we were there. I told them that we'd pick it up on the way home.
Well, Kayla couldn't have her second dose of zofran until 4:30PM. We took more walks around the clinic. All of the nurses and staff love to hold Sadie and try to get her to smile. :)
When Kayla finally got all done and de-accessed, we headed out the door. I wasn't sure exactly where the allergy clinic was, so we set out driving to where the lady on the phone told me to go. We didn't leave the clinic until about 5PM, so I called the allergy place to see how late they were open. Luckily, they were open until 5:30PM. So, after driving around forever trying to find this place and calling them for a little extra help (which wasn't helpful) I finally found it. We got there right at 5:30PM, got the kit and went to fight the rush-hour traffic.
We got home after 6PM and I was so hungry. It was so nice to have dinner there when I got home! Thank you visiting teachers! Tacos totally hit the spot. :) It was also really nice to not need to worry about getting Kayla to take zofran before going to bed. :)
Kayla did wake up throwing up around 5:30AM. She threw up a few times that morning, but it wasn't too bad, so I wasn't too concerned about getting her to take more zofran, although, I did sneak it in her water that she refused to drink. Oh, well. We survived.
Just a note, I got a call from Marnie that next day and she told me about a drug that is a cousin to zofran, but it is a longer lasting one. . . 3 days! She had already talked to Dr. Hansen about it and he had figured out a dose for Kayla and we are going to try it this next week. That means one dose at the clinic and she is good for 3 days! The only thing is that since it is a cousin to zofran, it has the potential for the same side effects when it is given with pentamidine, so even though Kayla is due for pentamidine this week, we are going to put it of for a week (because next week is an off week and she won't need zofran's cousin - I can't remember the name).
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