Last Friday, I took Kayla to Dr. Lee (ophthalmologist) for her appointment. Kayla is getting comfortable with going there. On the way over, she told me that she was going to whisper the letters into my ear so that I could tell the doctor what she was seeing and that she was going to get drops in her eyes (for dilation).
Kayla did great at the appointment. She did whisper the letters in my ear so I could repeat them aloud. And her eyes did get dilated. Her right eye tested at 20/20. Her left eye is still pretty much gone. She could see the doctor wave her arm up and down or side to side and a close distance (about 2-3 feet), which is about the same. Her optic nerves are very pale, which is a result of the chemotherapy. Her left eye is much paler than her right eye.
Dr. Lee talked to me about Kayla wearing safety glasses - since she is a "one-eyed" child. They would just be regular glasses, with very little prescription (just enough so the insurance would pay for them. . . ) that she would wear to have a little added protection to her good eye. It would be very bad for something to happen to that eye. So, we decided to do that. I asked Kayla if she would like to wear glasses like Nathan and she said yes. She picked out a cute little pair of pink frames and will get them in a couple of weeks.
Another thing I talked to Dr. Lee about was her left eye starting to wander - just a tad. When she looks at me, I can tell that her left eye is not focusing and it is just slightly off. It's not too noticeable right now, but if it gets worse, that is something they could correct with surgery. Yuck. I guess we'll see how things go down the road. . .
Sunday, December 30, 2012
December 27th - Week 35
Well, this past week, I did not go to the clinic with Kayla. Benson was sick with a fever and sore throat and was up just about ALL NIGHT. Between him and feeding Sadie, I think I got maybe 3 hours of broken up sleep. Since it was just a short appointment with no chemo, Bryson convinced Kayla to let him take her.
From what Bryson told me, everything went well. I guess I should have him write this post. ;) Kayla's counts were low, but good enough to get chemo if it would have been a week to start. Her platelets were just over 100 and her neutrophils were just over 1000. So, I hope they come up a bit before she starts the new cycle in two weeks.
Other than that, they did get to meet with Dr. Hansen, but they had to wait for a while because he had an emergency over at the hospital he had to go to. But he did say that Kayla was looking really good still. :)
My hopes to get a nap were futile. Benson didn't nap all day, but was ready for bed before 5PM. He is over his illness now and (knock on wood) it has not spread to anyone else.
From what Bryson told me, everything went well. I guess I should have him write this post. ;) Kayla's counts were low, but good enough to get chemo if it would have been a week to start. Her platelets were just over 100 and her neutrophils were just over 1000. So, I hope they come up a bit before she starts the new cycle in two weeks.
Other than that, they did get to meet with Dr. Hansen, but they had to wait for a while because he had an emergency over at the hospital he had to go to. But he did say that Kayla was looking really good still. :)
My hopes to get a nap were futile. Benson didn't nap all day, but was ready for bed before 5PM. He is over his illness now and (knock on wood) it has not spread to anyone else.
Merry Christmas!
We've had a great Christmas so far (the kids still have another week off of school. . . ). My parents were here for a day before they flew to Texas to spend Christmas with my sister's family. Here is a picture diary of our Christmas. We got one of the girls together.
Lily got a little gift from her Primary teacher. She spent some time making this little ornament.
Nathan had fun making Sadie smile.
We don't get many of these. . . a picture together. :)
On Christmas Eve, the kids decorated gingerbread houses. . . made out of Rice Krispy treats. I got the idea from my cousin (thanks, Tiffany!) and it was a total hit. Everyone got to decorate their own and they were yummy to eat. Here's Kayla's:
And Lily's:
Nathan's:
Benson's:
For Christmas, Bryson got new guitar strings for me and restrung them! He does not even play the guitar, but after watching a video on YouTube, he successfully put on the new strings. What a guy!
Our Christmas Eve pajama picture. . .
My cutie matching girls. . .
Lily and Kayla left presents for Santa:
Kayla loved her Little Mermaid Barbie.
Nathan was excited to finally complete his set of the Percy Jackson books. He's read the first three like 6 times. . .
Benson's garbage truck kept him entertained on Christmas morning. :)
Lily became an expert at Legos.
And Sadie got all worn out. . .
I didn't catch every moment, but we are so grateful for this Christmas season that we have to celebrate the birth of our Savior, Jesus Christ. We have been through an incredible year and are counting our blessings each day.
Merry Christmas!
Tuesday, December 18, 2012
December 18th - Week 34
Today was week four in Kayla's latest chemo cycle. I can't remember right now how many more cycles she has, but it's four weeks of chemo, two weeks off. What great timing for her two weeks off to be Christmas and New Years. Yay! She'll still have to go in to the clinic, but there will be no fights trying to get her to take zofran. :)
We had an early morning appointment today. Kayla, Sadie and I were out the door by 7:30AM. I left Benson asleep and Bryson took him to a friend's house once he woke up (who even let him come in underwear. . . potty training has been a little difficult to keep consistent with, but he is doing great). Thanks! We got to the clinic and Kayla got checked in, accessed and we met with Marnie.
The only thing I asked Marnie about was the results of Kayla's EKG. Marnie told me that she had seen them and they looked fine, but wanted to talk to Dr. Hansen first. Kayla's ankles are still fairly weak, from the vincristine, but she can still kind of walk on her heels. We have been slacking on her physical therapy exercises . . I guess we need to do better at that. I normally don't worry too much because she is so active, but with the weather getting colder, we are not quite as active. Other than that, Kayla looks great.
In the chemo suite, Kayla watched a movie that we brought for a few minutes. Then Miss Jenn brought her a project to do. She loves projects. :) Kayla colored a Christmas tree and then had some paints to put lights and ornaments on the tree. When she was done with that, Miss Stephanie and Miss Irene came and did music with her. She wanted to stay on the bed to do it today, instead of the little table. I got out of their way and Kayla had a lot of fun singing and making up silly songs while playing all of the fun instruments.
Marnie called nurse Penny's phone in the chemo suite and asked to talk to me. She had talked to Dr. Hansen about the EKG results and wanted to follow up with me. Marnie told me that the EKG looked good and normal. So, there was no side affect from giving the zofran and pentamadine together. My one question I will try to remember to ask next week (and we get to see Dr. Hansen then) if this indicates that each time she gets zofran and pentamadine there will be no risk of heart complications, or if each time there will still be a risk.
After music time, Kayla's lunch came, so we ate. I put her movie back on and I think she fell asleep, or almost did. I was able to have a short conversation with my amazing sister-in-law who just delivered twin girls on her bathroom floor a few days ago. They didn't have time to get to the hospital! Crazy story. :)
While we were there, Miss Jenn brought in a present for Kayla. Kayla was busy with music time, so she didn't see what it was. It is a little pig stuffed animal from Scentsy that you can put a little smelly thing inside. It is really cute. Since she didn't see it, I am going to wrap it and put it under the tree for her for Christmas.
Miss Jenn (we just love her) came and took Kayla out to the lobby where they had a big wagon full of stuff people had donated. Kayla filled a stocking with presents for me! Wow! She brought it back to me and let me open it. There was a red kitchen towel , a pink pen, a purple pencil, a little book of activities for kids, a little family plaque, and a gift card for St. Luke's food places/gift shop. Sometimes I feel like we get super spoiled there. It really makes me want to donate things to them. We will definitely be doing that in the future.
Today Kayla only got carboplatin, so between that and starting so early, the day seemed to be shorter. Plus, comparing it to last weeks marathon day, it seemed really short. :) We were done just after 1:30PM and headed home.
Ugh. I took a cute picture of Kayla and Sadie, but my computer is being picky and is not reading my camera card. I guess I will have to add it later. By the way, Sadie is so sweet and does so well while we are there. She sleeps most of the time. Today, though, she did blow out her diaper. Nice.
Tonight I have been unsuccessful at getting Kayla to take zofran. She promised me that she would take it in the middle of the night if she wakes up throwing up. Sure. . . let the battle begin.
We had an early morning appointment today. Kayla, Sadie and I were out the door by 7:30AM. I left Benson asleep and Bryson took him to a friend's house once he woke up (who even let him come in underwear. . . potty training has been a little difficult to keep consistent with, but he is doing great). Thanks! We got to the clinic and Kayla got checked in, accessed and we met with Marnie.
The only thing I asked Marnie about was the results of Kayla's EKG. Marnie told me that she had seen them and they looked fine, but wanted to talk to Dr. Hansen first. Kayla's ankles are still fairly weak, from the vincristine, but she can still kind of walk on her heels. We have been slacking on her physical therapy exercises . . I guess we need to do better at that. I normally don't worry too much because she is so active, but with the weather getting colder, we are not quite as active. Other than that, Kayla looks great.
In the chemo suite, Kayla watched a movie that we brought for a few minutes. Then Miss Jenn brought her a project to do. She loves projects. :) Kayla colored a Christmas tree and then had some paints to put lights and ornaments on the tree. When she was done with that, Miss Stephanie and Miss Irene came and did music with her. She wanted to stay on the bed to do it today, instead of the little table. I got out of their way and Kayla had a lot of fun singing and making up silly songs while playing all of the fun instruments.
Marnie called nurse Penny's phone in the chemo suite and asked to talk to me. She had talked to Dr. Hansen about the EKG results and wanted to follow up with me. Marnie told me that the EKG looked good and normal. So, there was no side affect from giving the zofran and pentamadine together. My one question I will try to remember to ask next week (and we get to see Dr. Hansen then) if this indicates that each time she gets zofran and pentamadine there will be no risk of heart complications, or if each time there will still be a risk.
After music time, Kayla's lunch came, so we ate. I put her movie back on and I think she fell asleep, or almost did. I was able to have a short conversation with my amazing sister-in-law who just delivered twin girls on her bathroom floor a few days ago. They didn't have time to get to the hospital! Crazy story. :)
While we were there, Miss Jenn brought in a present for Kayla. Kayla was busy with music time, so she didn't see what it was. It is a little pig stuffed animal from Scentsy that you can put a little smelly thing inside. It is really cute. Since she didn't see it, I am going to wrap it and put it under the tree for her for Christmas.
Miss Jenn (we just love her) came and took Kayla out to the lobby where they had a big wagon full of stuff people had donated. Kayla filled a stocking with presents for me! Wow! She brought it back to me and let me open it. There was a red kitchen towel , a pink pen, a purple pencil, a little book of activities for kids, a little family plaque, and a gift card for St. Luke's food places/gift shop. Sometimes I feel like we get super spoiled there. It really makes me want to donate things to them. We will definitely be doing that in the future.
Today Kayla only got carboplatin, so between that and starting so early, the day seemed to be shorter. Plus, comparing it to last weeks marathon day, it seemed really short. :) We were done just after 1:30PM and headed home.
Ugh. I took a cute picture of Kayla and Sadie, but my computer is being picky and is not reading my camera card. I guess I will have to add it later. By the way, Sadie is so sweet and does so well while we are there. She sleeps most of the time. Today, though, she did blow out her diaper. Nice.
Tonight I have been unsuccessful at getting Kayla to take zofran. She promised me that she would take it in the middle of the night if she wakes up throwing up. Sure. . . let the battle begin.
Sunday, December 16, 2012
Christmas Lights
Friday night we took the kids out for pizza and then walked around downtown where there is a big light display. The kids had fun walking around on the lighted path. There were lights everywhere along the little creek that runs through town.
They had to get a picture sitting on a big rock. . .
. . . And since you can't see Sadie in the pictures. . . here's a cute one I took the other day. :)
Little Ladies in Red
I took some pictures before church this morning of the girls in their red dresses.
Aunt Christy sent Sadie a little red dress for Christmas. It just happened to perfectly match the one Kayla got at the clinic (if you haven't read my previous post, I explain the red dress tradition there).
And here's a better look at Kayla's clinic dress. So cute! I love my little ladies in red!
Tuesday, December 11, 2012
December 11th - Week 33
Today just about takes the cake for the longest day. Kayla and I left home, dropped Benson off at a friend's, and got on the road by 9AM. We made some Peppermint Sugar Body Scrub (if you'd like to make it, I posted the recipe here on my self-reliance blog last year) for all of the nurses at the clinic, so my hands were very full walking from the bottom of the parking garage (where Kayla insists we park) to the clinic. A baby carseat (a very heavy one. . . Sadie is a big girl!), big bag of stuff for the day and a box of half pint jars full of the body scrub. I'm not going to feel too bad for not getting my workout in for the day. ;)
Kayla got accessed, checked in, and hallelujah! - we got our usual spot! A bed tucked back in the corner and access to the little kid table. We unloaded our stuff there and then went to meet with Marnie. Kayla's counts were all good and we didn't really have much to talk about. She's doing great. Marnie did mention how great Kayla's hair looks and I constantly count that blessing. With the chemo she is receiving it is very common to loose your hair or at least have it thin out a lot and Kayla has not even had any thinning. Hooray for strong hair follicles!
We were in for a very long day. She got her regular chemo: 1 hour pre-hydradration, 1 1/2 hours chemo, 2 hours post hydration. Plus it was time for pentamidine (1 hour). THEN, we had to go over to the hospital for an EKG.
Kayla did some music with Miss Stephanie and Miss Irene (I think Irene is training to take over, or at least sub for Stephanie when Stephanie has her baby in a few months--and Kayla likes Irene, too). Kayla got Stephanie to play her favorite Christmas song on the guitar. You'll never guess what it is. No one ever does. It is the song that goes, "Last Christmas, I gave you my heart but the very next day, you gave it away. . ." It is really funny that it is her favorite song. She and Lily listen to it over and over and over. Even Benson sings along with it now!
Kayla worked on a few projects where I didn't get pictures. She cut out Christmas light bulbs on colored paper - one for each letter of her name - and wrote her name on them with glitter glue and stapled them to a piece of yarn. Miss Jenn helped her with that project.
Kayla was also given a beautiful red Christmas dress. There was a little girl that used to get treatment at the clinic who loved red dresses. So, one year, her family donated red dresses for the little girls at clinic. Now it has become a tradition each Christmas to give the girls red dresses. Many different people donate them. It is a beautiful dress. I will try to post a picture of Kayla wearing it, soon.
We watched Snow White, ate lunch, did some coloring, walked laps around the hallway, and visited with the nurses there. It was a nice day, but just very long. She didn't get done until 4:45PM. Then we walked over to the hospital for the EKG. Luckily, it didn't take very long. We got done in time to hit all of the rush-hour traffic and made it home a little after 6PM.
By that time, Kayla was over due for more Zofran. She was very tired, though, which means she was very unreasonable, too. Bryson helped me get her to take some, but then she ended up throwing up right afterwards. At the same time, Benson was crying because he had a poopy diaper and Sadie was crying because she was hungry and Bryson needed to leave for a meeting. Let's just say I was glad to have all the kids in bed by 8PM so I could have some quiet time during which I enjoyed talking to my mom on the phone.
Good night!
Monday, December 10, 2012
MSTI Clinic Christmas Party
So, last Saturday the clinic had a Christmas party. We had a lot of fun! Miss Sadie spent most of the party like this:
When we got there, the kids put name tags on and each got a ticket to put in a drawing. There were several different prizes set out on a couple of tables. Each prize had a cup in front of it where the kids could put there ticket. So, they picked which prize they wanted to win and put their ticket in that cup. The girls went for the Barbie's, Nathan went for the Lego Star Wars.
There was a big room filled with tables and cake being served. The kids each got their piece of cake and sat down to eat. Here are the boys:
And the girls:
And Lily took a picture of me and Kayla:
When the cake was done and several trips to the bathroom were made (they all never need to go at once. . . . we went into another big room filled with carnival type games. There was a fishing game, ring toss, coin toss, bean bag toss to knock down a stack of cans, football throw, and Santa.
They kids went threw the games faster than I could get my camera ready. Here is Lily at the ring toss:
And Benson at the ring toss:
Oh, I forgot to mention face painting.
Guess who won the drawing for the Star Wars Legos? Yep, Nathan! It was pretty cool. :)
Benson was excited to throw a football:
Bryson and I had to divide and conquer a bit with the kids, so here is one of the doctors helping Kayla out with the football throw. What made the party fun was seeing all of the nurses and friends their that we see at the clinic each week. They all knew us and made the whole experience fun.
While we were in line for one of the games, Benson walked right up to Santa and sat on his lap. There was an elf taking pictures. :) So, we were going to do a family picture, BUT Nathan and Kayla refused to be in the picture. Ugh. Lily and Benson were willing to, though.
After we were finished in the carnival room, we went to the craft room. There were several different crafts that the kids made. I should have got a picture of Benson's snowman. He was so proud of it that he was going up to everyone saying, "Look what I made!"
And right when we were ready to leave, Sadie awoke. So, the kids ate another piece of cake while I fed Sadie and then we went home.
The kids had so much fun they were already talking about next year (although, Kayla should definitely be done with chemo by then, so I'm not sure if we'll be invited or not). As I mentioned earlier, the whole party was even more fun because of the people who were putting it on. It was nice to see everyone in a fun atmosphere where they weren't wearing scrubs and administering drugs. :)
Merry Christmas!
December 4th - Week 32
I need to get this updated before we go back to the clinic tomorrow. :) It's often hard to find the time to keep up with everything. But, I want to make sure that I document this time.
Last Tuesday, we went into the clinic. Kayla got checked in, accessed, and we met with Dr. Hansen. Kayla's neutrophils were up above 2,000! And her platelets were over 400. Yay! We had a nice visit with her doctor. Kayla is still doing very well. Hmmmm....I guess I need to be better at updating my blog sooner because I can't remember too much about our visit. Next time, she will be getting Pentamidine (the antibiotic to help prevent pneumonia), which will add an extra hour on to our already long day. Also, afterwards, we will be going over to the hospital to do an EKG. Dr. Hansen is still concerned about giving Kayla Pentamidine on the same day as giving her Zofran. The reason is that both of them tend to slow down the heart. They have been given together for many years, but just recently it has come up that there can be some rare but serious side effects. So, he wants Kayla to have an EKG done right afterwards so he can make sure that everything is going okay. If it is not, then we will have to try again to get Kayla to actually take her medication orally. Oh joy. If you have not been following since the beginning, you can see here just a glimpse of some struggles we've had with that.
Kayla and I had a pretty fun day in the chemo suite. She played some music with Stephanie, which she hadn't done for quite awhile.
She also made three Christmas cards to send to soldiers. One of the nurses has a family member serving and she wanted the kids at the clinic to make cards that she'll send in a package for Christmas.
Why make only one? Kayla loves any kind of craft project, so she just kept making them (I mean "we").
Someone had taken our regular spot, so we were stuck at a little kid table all day long. That got a little uncomfortable for me, but hey, I'm not pregnant anymore, so I'm not complaining! :) Sadie was an angel and slept most of the time we were there.
That night, after we got home, I was trying to get Kayla to take Zofran (surprise, surprise) and wasn't having much luck, so I passed the job on to Bryson. He took her upstairs and came back down in like five minutes and said that she'd taken it. Guess who is in charge of Zofran now? :) I told Bryson that he could get up with Kayla at four in the morning and get her to take more. Well, for the first time in forever, she made it through the entire night without throwing up! I was very excited about that. She did throw up a couple of times in the morning, but I could not get her to take any more Zofran. So, she was a little lethargic all day, but she didn't throw up more than that couple of times.
And that about sums it up. :)
Last Tuesday, we went into the clinic. Kayla got checked in, accessed, and we met with Dr. Hansen. Kayla's neutrophils were up above 2,000! And her platelets were over 400. Yay! We had a nice visit with her doctor. Kayla is still doing very well. Hmmmm....I guess I need to be better at updating my blog sooner because I can't remember too much about our visit. Next time, she will be getting Pentamidine (the antibiotic to help prevent pneumonia), which will add an extra hour on to our already long day. Also, afterwards, we will be going over to the hospital to do an EKG. Dr. Hansen is still concerned about giving Kayla Pentamidine on the same day as giving her Zofran. The reason is that both of them tend to slow down the heart. They have been given together for many years, but just recently it has come up that there can be some rare but serious side effects. So, he wants Kayla to have an EKG done right afterwards so he can make sure that everything is going okay. If it is not, then we will have to try again to get Kayla to actually take her medication orally. Oh joy. If you have not been following since the beginning, you can see here just a glimpse of some struggles we've had with that.
Kayla and I had a pretty fun day in the chemo suite. She played some music with Stephanie, which she hadn't done for quite awhile.
She also made three Christmas cards to send to soldiers. One of the nurses has a family member serving and she wanted the kids at the clinic to make cards that she'll send in a package for Christmas.
Why make only one? Kayla loves any kind of craft project, so she just kept making them (I mean "we").
Someone had taken our regular spot, so we were stuck at a little kid table all day long. That got a little uncomfortable for me, but hey, I'm not pregnant anymore, so I'm not complaining! :) Sadie was an angel and slept most of the time we were there.
That night, after we got home, I was trying to get Kayla to take Zofran (surprise, surprise) and wasn't having much luck, so I passed the job on to Bryson. He took her upstairs and came back down in like five minutes and said that she'd taken it. Guess who is in charge of Zofran now? :) I told Bryson that he could get up with Kayla at four in the morning and get her to take more. Well, for the first time in forever, she made it through the entire night without throwing up! I was very excited about that. She did throw up a couple of times in the morning, but I could not get her to take any more Zofran. So, she was a little lethargic all day, but she didn't throw up more than that couple of times.
And that about sums it up. :)
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