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. :)
Wednesday, November 28, 2012
November 26th - Our LAST Week 31!
So, as you can see from the title of this post, Kayla made her counts! Whoohoo! When we met with Dr. Hansen, the nurse came in and showed me the printout of her counts. Kayla's neutrophils were at 1000. Exactly what they needed to be to start the next cycle of chemo. Yay!!! Dr. Hansen also told me that Kayla's bone marrow test came back normal. Yay!!! It was a good visit, although, he also said that since she had such a long delay, she will probably have more. Sigh. We are just barely halfway through.
There was no school, so Lily wanted to come with us. She and Kayla had lots of fun coloring, watching movies, eating lunch, and playing with stuff they brought along for the day. Sadie was an angel and slept all afternoon. And, we met a new friend who played Sequence Junior with us several times. It was a very good day!
Here is a picture of the girls all snuggled up in the bed with their warm blankets from the "oven."
It did take about 20 minutes of coaxing to get Kayla to take zofran that night after dinner. She finally took it when I told her she could take a bath with Sadie. :)
Kayla woke up at about 4:30AM and ran into our bathroom to throw up. This is the part I had not missed during all of our weeks off. She wasn't quite as reasonable that time when I tried to get her to take another zofran. I think I have lost a little compassion when it comes to that, or maybe I was just tired, but I was not going to sit on the bathroom floor for the rest of the night trying to get her to take it. I put it in her mouth and held it until it had mostly dissolved. She was so mad and worked up that she threw up again! Ugh. So, I wasn't sure if any of the Zofran got in her or not, but I went ahead and let her go back to bed.
Well, a half hour later, she came running in again to throw up. I got another Zofran pill. After a few minutes of coaxing, I just put it in her mouth and stuck her sippy cup of water in her mouth and told her to drink until it was gone. She was mad, but didn't throw up, and went back to bed. Halleluja. Right as I got her back in bed, Sadie woke up, so I fed her. After I was done feeding her, Benson started crying. So, I went to get him, hoping to rock him for a few minutes and convince him to go back to sleep. But then, Nathan got up (it was about 6AM now) and when Benson saw him up, there was no getting back to sleep. I guess that's all the sleep I was going to get. So, there's the life of a mom for ya! ;)
Kayla felt kind of sick all day, although she didn't throw up again. I'm afraid that her body is wearing down a bit and the effects of the chemo are lasting longer and longer. She has been doing better since then, but it is definitely taking longer for her to bounce back to normal after a treatment. We just keep praying for her. Thanks for all of your prayers.
November 20th - Week 31, Again, and Bone Marrow Test
Tuesday, the 20th, was not like our normal clinic day. Nathan and Lily were up getting ready for school while I was getting ready for the day. Then I heard Kayla get up and go downstairs. A few minutes later, I remembered that Kayla couldn't eat anything (if she had to do the bone marrow test, she'd have to be put to sleep) and rushed downstairs to make sure she hadn't started eating her normal bowl of cereal. Nathan and Lily were eating breakfast, but Kayla was just lying on the floor watching cartoons. She had remembered that she couldn't eat or drink anything that day. Wow. That was the first time she amazed me that day.
After Nathan and Lily got on the bus, I got Kayla, Benson and Sadie ready to go and we headed out the door to Winco. Lily's class was celebrating the November birthdays that afternoon and she was the only one with a birthday in November (which meant that we were the only ones bringing treats--which have to be store bought). After grabbing some sugar cookies and drinks I piled the kids back into the car and headed to the school (which is out in the boonies. . .the other direction).
We got to the school and took the treats in to Lily's class. I didn't know if we'd make it back in time for the party. . . it all depended on Kayla's counts. If they were up and we did regular chemo, it would be a long day and we'd miss the party. If she had to get the bone marrow test, then we'd probably be done and back in time for the party. Each option had its pluses and minuses.
Then, I piled the kids back into the car and we headed home for about one minute. I ran inside and grabbed our stuff for the day. I had to be prepared for a full day of chemo--which means food and activities to keep us busy for about 6 hours. We then dropped off Benson at a friend's house and headed to Boise.
All this time, Kayla did not ask for any food or drink. She never even complained that she was hungry or thirsty. I was totally amazed. I had told her ahead of time what we'd be doing and she was completely comfortable with not eating, and going over to the hospital if we needed to do the procedure. That girl has come A LONG WAY. :)
At the clinic, Kayla got accessed and we waited for a little while for the blood counts to come back. They were down, neutrophils were only 530--down even further from the last week. Ugh. They need to be 1000 to do a chemo treatment. So, we walked over to the Pediatric Intensive Care Unit. It was the first time we'd been back there since Kayla's original admittance. That felt kind of weird.
The doctor came in and talked to me beforehand. I asked him what we would learn from this procedure or how it would help. He asked me if I was the kind of person who wanted a little information or a lot of information. I said a lot. So, he told me that the worst case scenario (which he had never seen before), the marrow changes as a result of the chemotherapy and is kind of leukemic or cancer-like (or something like that). In most cases, they just look at the marrow and can see that it is still working fine, but the neutrophils are low. They do the procedure just to rule out the worst case possibilities before they move on. Alrighty.
Another man (his ID tag said "Medical Staff" so I'm not sure exactly what he was. . . and the photo on his tag was a picture of Sleeping Beauty) came in and talked to us. He was very kid friendly and talked to Kayla a bit and asked me questions about how she does with anesthesia. Luckily, she has had no problems with it.
When it was time to start (by the way, Sadie had slept the entire morning of running around and was just now waking up. What a great baby!), Kayla let the nurses help her onto the bed while the man with the Sleeping Beauty tag (I guess he was the nurses anesthetist) gave her the anesthetic through her port. The doctor told me I could just sit and watch. . . which I wasn't planning on doing, but I decided to anyway. So, I had a clear view of the doctor cleaning an area on her lower back, numbing the site, sticking a huge needle thing in with a handle crank thing on the end (it kind of resembled a hose bib handle). He stuck a smaller needle inside the big one and drew the marrow out into a syringe. Then he used the handle crank thing to push around (I was glad she was asleep. . . he was putting a lot or pressure on that thing) and get a small sample of her pelvic bone. I asked him how big the bone sample would be and he told me that it is about the size of the tip of a pencil lead. When he was done, he removed the huge needle thing and bandaged up the hole.
The whole procedure took about 5 minutes. Then I just waited for Kayla to wake up. About a half hour later, she just sat up and said, "I want a cookie." Okey-dokie! So, I checked with the nurse to make sure it was alright if I gave her something and then got her a water bottle and a cookie. We watched a little PBS and then the nurse came in, de-accessed her port and said we could leave.
It ended up being perfect timing to leave the hospital and drive straight out to the school. We got there just in time for the birthday party. :) So, I helped make tootsie pop turkeys and then we came home.
And that was our day. Whew.
Kayla did great all afternoon, but by the evening she was starting to get sore. The doctor told me she could take Tylenol (yeah, right, like she'd actually take it, ha ha) for the pain, but that it shouldn't be too bad. By the time Kayla went to bed she was walking very slowly because she was in a decent amount of pain. I helped her into bed. She asked me if I would help her get out of bed in the morning if she was still sore. What a sweet, brave, strong girl. I am so proud of how well she did that day. She was constantly amazing me. She has come a long way. . .
After Nathan and Lily got on the bus, I got Kayla, Benson and Sadie ready to go and we headed out the door to Winco. Lily's class was celebrating the November birthdays that afternoon and she was the only one with a birthday in November (which meant that we were the only ones bringing treats--which have to be store bought). After grabbing some sugar cookies and drinks I piled the kids back into the car and headed to the school (which is out in the boonies. . .the other direction).
We got to the school and took the treats in to Lily's class. I didn't know if we'd make it back in time for the party. . . it all depended on Kayla's counts. If they were up and we did regular chemo, it would be a long day and we'd miss the party. If she had to get the bone marrow test, then we'd probably be done and back in time for the party. Each option had its pluses and minuses.
Then, I piled the kids back into the car and we headed home for about one minute. I ran inside and grabbed our stuff for the day. I had to be prepared for a full day of chemo--which means food and activities to keep us busy for about 6 hours. We then dropped off Benson at a friend's house and headed to Boise.
All this time, Kayla did not ask for any food or drink. She never even complained that she was hungry or thirsty. I was totally amazed. I had told her ahead of time what we'd be doing and she was completely comfortable with not eating, and going over to the hospital if we needed to do the procedure. That girl has come A LONG WAY. :)
At the clinic, Kayla got accessed and we waited for a little while for the blood counts to come back. They were down, neutrophils were only 530--down even further from the last week. Ugh. They need to be 1000 to do a chemo treatment. So, we walked over to the Pediatric Intensive Care Unit. It was the first time we'd been back there since Kayla's original admittance. That felt kind of weird.
The doctor came in and talked to me beforehand. I asked him what we would learn from this procedure or how it would help. He asked me if I was the kind of person who wanted a little information or a lot of information. I said a lot. So, he told me that the worst case scenario (which he had never seen before), the marrow changes as a result of the chemotherapy and is kind of leukemic or cancer-like (or something like that). In most cases, they just look at the marrow and can see that it is still working fine, but the neutrophils are low. They do the procedure just to rule out the worst case possibilities before they move on. Alrighty.
Another man (his ID tag said "Medical Staff" so I'm not sure exactly what he was. . . and the photo on his tag was a picture of Sleeping Beauty) came in and talked to us. He was very kid friendly and talked to Kayla a bit and asked me questions about how she does with anesthesia. Luckily, she has had no problems with it.
When it was time to start (by the way, Sadie had slept the entire morning of running around and was just now waking up. What a great baby!), Kayla let the nurses help her onto the bed while the man with the Sleeping Beauty tag (I guess he was the nurses anesthetist) gave her the anesthetic through her port. The doctor told me I could just sit and watch. . . which I wasn't planning on doing, but I decided to anyway. So, I had a clear view of the doctor cleaning an area on her lower back, numbing the site, sticking a huge needle thing in with a handle crank thing on the end (it kind of resembled a hose bib handle). He stuck a smaller needle inside the big one and drew the marrow out into a syringe. Then he used the handle crank thing to push around (I was glad she was asleep. . . he was putting a lot or pressure on that thing) and get a small sample of her pelvic bone. I asked him how big the bone sample would be and he told me that it is about the size of the tip of a pencil lead. When he was done, he removed the huge needle thing and bandaged up the hole.
The whole procedure took about 5 minutes. Then I just waited for Kayla to wake up. About a half hour later, she just sat up and said, "I want a cookie." Okey-dokie! So, I checked with the nurse to make sure it was alright if I gave her something and then got her a water bottle and a cookie. We watched a little PBS and then the nurse came in, de-accessed her port and said we could leave.
It ended up being perfect timing to leave the hospital and drive straight out to the school. We got there just in time for the birthday party. :) So, I helped make tootsie pop turkeys and then we came home.
And that was our day. Whew.
Kayla did great all afternoon, but by the evening she was starting to get sore. The doctor told me she could take Tylenol (yeah, right, like she'd actually take it, ha ha) for the pain, but that it shouldn't be too bad. By the time Kayla went to bed she was walking very slowly because she was in a decent amount of pain. I helped her into bed. She asked me if I would help her get out of bed in the morning if she was still sore. What a sweet, brave, strong girl. I am so proud of how well she did that day. She was constantly amazing me. She has come a long way. . .
Sunday, November 18, 2012
November 14th - Week 31: Take 5
I am going to make this post short and sweet. Pretty much like the visit was. We left at 7:30AM, went to the clinic (getting stuck in awful traffic on the way), Kayla got accessed, checked vitals, and we met with the Dr. Meeker.
Kayla's neutrophil count was still too low for chemo - for the fifth week in a row. Last week, her neutrophils (they fight germs and infections) were at 500. They need to be at 1000. This week they were at 570. But, platelets were still good. :) So, we went home.
A nurse from the clinic called me on Friday and told me that Dr. Hansen wanted to do a bone marrow procedure on Kayla to check and see if something else is affecting her blood from recovering. So, after juggling some things, including rescheduling an appointment with Dr. Lee, the ophthalmologist, we will go in on Tuesday this next week. We'll go to the clinic at 10:30AM and they will check her blood, again. If it is good, they will give Kayla her regular chemo treatment. If not, we will go over to the hospital and she will get put to sleep while Dr. Hanson takes a small sample of her pelvic bone and marrow.
Kayla won't be able to eat or drink anything before hand, which will stink because the procedure isn't scheduled until 11:30AM. That will not be a pleasant morning. Anyway, I'll keep you updated. :)
Sunday, November 11, 2012
The Closing of a Short Chapter
I made it. Today was our ward's Primary Program. I knew that it would be great and that even if there was some huge mess up, it would be great because no matter what happens during a primary program, it is always great. :) But, I was still feeling a lot of anxiety last night and this morning.
And just another note, so far Kayla has been great this week with no sickness. Hopefully, those neutrophils are building themselves back up again. Sadie is sleeping amazingly, even at night. I feel a lot better when I get a normal amount of sleep. Benson is potty training. . . it was not on my list of things to do right now, but he will not keep a diaper on. He is doing great at it, though, so I am looking forward to only having one in diapers, again. Nathan and Lily had fabulous parent/teacher conferences. They are both so smart and well-behaved at school. I am so happy for their successes there and appreciate all that their teachers do. Bryson's work has been keeping him busy lately - I am grateful for all that he does to provide for us. He is the best husband and father!
The program was absolutely fantastic! I love our 150+ primary children! They said their parts perfectly and sang beautifully and besides a couple minor issues, everything went very smoothly. When all of those children are singing songs about our Savior and following the commandments it is impossible not to feel the Spirit.
Another big thing happened today. . . I was released as Primary President. My amazing counselors and secretary were also released. The bishop actually talked to me three weeks ago about the release. Luckily, I was able to convince him to let us stay in until after the program. ;) So, I had time to cry about it and let it all sink in before today. But, it was still hard. I was honestly just starting to get on top of everything and feel like I could handle it. After all, I had only been in since Christmas of last year. But after these past couple of absolutely crazy weeks, I think Heavenly Father was trying to tell me that it is okay to be released and I that I do need a break. I no longer have the stress in the back of my mind of everything that I should be doing but just can't get done (relating to primary. . .other things are still fair game). :)
I am grateful for all that my counselors and secretary did to support me and take so much of the burden from me during these difficult past months. There's no way I could have lasted as long as I did without them. I love our primary children and have learned so much from this past year. This calling has been a great experience for me, and I have learned so much. I am grateful for the opportunity I had to serve.
Kayla is always asking if she can carry Sadie and loves to give her hugs
and kisses. She is such a great little mother.
And just another note, so far Kayla has been great this week with no sickness. Hopefully, those neutrophils are building themselves back up again. Sadie is sleeping amazingly, even at night. I feel a lot better when I get a normal amount of sleep. Benson is potty training. . . it was not on my list of things to do right now, but he will not keep a diaper on. He is doing great at it, though, so I am looking forward to only having one in diapers, again. Nathan and Lily had fabulous parent/teacher conferences. They are both so smart and well-behaved at school. I am so happy for their successes there and appreciate all that their teachers do. Bryson's work has been keeping him busy lately - I am grateful for all that he does to provide for us. He is the best husband and father!
Wednesday, November 7, 2012
November 7th - Week 31 and holding. . .
For once we were a little early on our trip to the clinic today - which turned out perfect because right before we got there, I realized I had forgotten a bottle for Sadie. . . so we made a quick stop at WinCo. At the clinic, Kayla got checked in and accessed, and we met with Marnie.
The next cycle of chemo treatment has been delayed the last few weeks because Kayla's platelet count has been too low. Well, when the blood counts came back, the platelets were up to 178! Hooray! That was a huge jump.
But, her neutrophil count had plummeted to 500. Neutrophils are the part of your blood that fight off germs and infection. Kayla's need to be at 1000 in order to do chemo. So, we are delayed. . . AGAIN. This is our fourth week in a row. I guess her body just needs a break.
The scary thing about having her neutrophil count so low is that any kind of infection can come on super fast, and then she'll have to be admitted into the hospital. Marnie told me that if she gets a fever of 101, or even if she just looks sick and my "mommy radar" is going off, I need to call them and bring Kayla in. So, just another little stress in the back of my mind.
Just a little update on other stuff. Lily's birthday was on Friday, and my parents and sister (and her boyfriend) came to visit for the weekend. I put them to work on Saturday helping me can my 300 pounds of apples. We got 80 quarts of applesauce done, but I still have a few more buckets in my garage to get done.
On Sunday, we blessed our sweet little Sadie. It was a beautiful blessing and we just love her to pieces!
On Monday, which was my birthday, we went to the allergy doctor for Benson (in Meridian. . . 25 minutes away). He previously got a blood test done at the pediatrician that showed he has multiple food allergies, so his doctor referred us to the allergy clinic. It was a super long and tiring afternoon there with three kids, Benson screaming each time the doctor came in to tell me very important information (mainly because there was a glass jar full of Dum Dums on the counter. Why in plain sight? I don't know, but it caused huge problems for him). The nurse did the lovely prick test all over his back, which didn't sit well with him either. In the end we found out that he is allergic to peanuts (and all tree nuts), eggs, milk, wheat, soybeans, cats, and dust mites. I learned how to use an epipen and we now have to have one for Benson at all times, they gave me another breathing thing that I think I know how to use (picture screaming Benson during instruction). The doctor told me that Benson needed another blood test (which requires a trip to the hospital for lab work), and he also wanted to do another test on Benson's peanut allergy, to find out how serious it is. In the end, he told me to keep peanuts and eggs away from Benson, but the rest are okay. They just cause eczema, which is a pain, but easier to deal with than no wheat or milk.
After getting home from that, I was so exhausted, so tired of cake, and had 5 (well, 4, Sadie is a sweetheart) cranky kids that I just wanted to feed and get to bed. Bryson and I were able to get them all to sleep by 8pm (sorry, we didn't even have family night) and I went and TOOK A BATH. A good friend made me a nice bath salt recipe and I decided to try it out. It was a nice end to a crazy day. . week. . . 6 months? Plus, Bryson and I watched an episode of Psych. :)
Tuesday, Kayla had a dentist appointment with the dentist who did her surgery back in May. It was all the way in Boise, and I knew that they couldn't do anything like clean her teeth. So, it was just going to be a visit where they take pictures (if she'd let them) and the dentist would look in her mouth. Is that worth another 30 minute trip with kids? I was not looking forward to it. If you can't tell, I have not been looking forward to this whole week. ;) It all ended up working out okay. The dental assistant ( who looked maybe 18?) was a little thrown off by Kayla's situation and my instructions that she couldn't get her teeth cleaned (because of her port, she's needs antibiotics in order to have any dental work done) and kept saying he'd check with the doctor. Kayla did let him take pictures of her teeth (wow). It helped that she could sit on my lap because I am no longer pregnant. The dentist was really nice (it wasn't the one who did her surgery) and seemed to be very knowledgeable, even though he didn't look old enough to be out of dental school yet. He looked at her teeth and everything was good.
That afternoon I spent some time getting things ready for our church primary program which is this Sunday (150 kids in our primary!). And I also made it over to the polls to vote!
Today, after we got home from the clinic (early), I figured it would be the best time to get Benson's blood work done, so we went over to the hospital (luckily we could go to the new St. Luke's in Nampa - not so far away) and did that. He was great until the nurse tied that rubber strip on his arm to get his vein ready. When she stuck the needle, she had to move it around quite a bit to get his vein. Poor guy! It looked (and from his crying - sounded) very painful. It was quick though, and then we went home.
I squeezed in about 5 minutes of rest on the couch where I had time to stop and realize that I felt like a zombie. Then Nathan and Lily got home from school and I took them to their dentist appointments - no cavities, Yay!
Sorry for the long and a little bit venting post. I feel so tired and ready for any kind of break right now. Having the kids off from school for the rest of the week and parent teacher conferences and trying to squeeze in a meeting with my primary leaders to make sure we are all prepared for our primary program on Sunday isn't exactly a break, but by the end of next week it looks hopeful. :) Thanks for your prayers. . .
The next cycle of chemo treatment has been delayed the last few weeks because Kayla's platelet count has been too low. Well, when the blood counts came back, the platelets were up to 178! Hooray! That was a huge jump.
But, her neutrophil count had plummeted to 500. Neutrophils are the part of your blood that fight off germs and infection. Kayla's need to be at 1000 in order to do chemo. So, we are delayed. . . AGAIN. This is our fourth week in a row. I guess her body just needs a break.
The scary thing about having her neutrophil count so low is that any kind of infection can come on super fast, and then she'll have to be admitted into the hospital. Marnie told me that if she gets a fever of 101, or even if she just looks sick and my "mommy radar" is going off, I need to call them and bring Kayla in. So, just another little stress in the back of my mind.
Just a little update on other stuff. Lily's birthday was on Friday, and my parents and sister (and her boyfriend) came to visit for the weekend. I put them to work on Saturday helping me can my 300 pounds of apples. We got 80 quarts of applesauce done, but I still have a few more buckets in my garage to get done.
On Sunday, we blessed our sweet little Sadie. It was a beautiful blessing and we just love her to pieces!
On Monday, which was my birthday, we went to the allergy doctor for Benson (in Meridian. . . 25 minutes away). He previously got a blood test done at the pediatrician that showed he has multiple food allergies, so his doctor referred us to the allergy clinic. It was a super long and tiring afternoon there with three kids, Benson screaming each time the doctor came in to tell me very important information (mainly because there was a glass jar full of Dum Dums on the counter. Why in plain sight? I don't know, but it caused huge problems for him). The nurse did the lovely prick test all over his back, which didn't sit well with him either. In the end we found out that he is allergic to peanuts (and all tree nuts), eggs, milk, wheat, soybeans, cats, and dust mites. I learned how to use an epipen and we now have to have one for Benson at all times, they gave me another breathing thing that I think I know how to use (picture screaming Benson during instruction). The doctor told me that Benson needed another blood test (which requires a trip to the hospital for lab work), and he also wanted to do another test on Benson's peanut allergy, to find out how serious it is. In the end, he told me to keep peanuts and eggs away from Benson, but the rest are okay. They just cause eczema, which is a pain, but easier to deal with than no wheat or milk.
After getting home from that, I was so exhausted, so tired of cake, and had 5 (well, 4, Sadie is a sweetheart) cranky kids that I just wanted to feed and get to bed. Bryson and I were able to get them all to sleep by 8pm (sorry, we didn't even have family night) and I went and TOOK A BATH. A good friend made me a nice bath salt recipe and I decided to try it out. It was a nice end to a crazy day. . week. . . 6 months? Plus, Bryson and I watched an episode of Psych. :)
Tuesday, Kayla had a dentist appointment with the dentist who did her surgery back in May. It was all the way in Boise, and I knew that they couldn't do anything like clean her teeth. So, it was just going to be a visit where they take pictures (if she'd let them) and the dentist would look in her mouth. Is that worth another 30 minute trip with kids? I was not looking forward to it. If you can't tell, I have not been looking forward to this whole week. ;) It all ended up working out okay. The dental assistant ( who looked maybe 18?) was a little thrown off by Kayla's situation and my instructions that she couldn't get her teeth cleaned (because of her port, she's needs antibiotics in order to have any dental work done) and kept saying he'd check with the doctor. Kayla did let him take pictures of her teeth (wow). It helped that she could sit on my lap because I am no longer pregnant. The dentist was really nice (it wasn't the one who did her surgery) and seemed to be very knowledgeable, even though he didn't look old enough to be out of dental school yet. He looked at her teeth and everything was good.
That afternoon I spent some time getting things ready for our church primary program which is this Sunday (150 kids in our primary!). And I also made it over to the polls to vote!
Today, after we got home from the clinic (early), I figured it would be the best time to get Benson's blood work done, so we went over to the hospital (luckily we could go to the new St. Luke's in Nampa - not so far away) and did that. He was great until the nurse tied that rubber strip on his arm to get his vein ready. When she stuck the needle, she had to move it around quite a bit to get his vein. Poor guy! It looked (and from his crying - sounded) very painful. It was quick though, and then we went home.
I squeezed in about 5 minutes of rest on the couch where I had time to stop and realize that I felt like a zombie. Then Nathan and Lily got home from school and I took them to their dentist appointments - no cavities, Yay!
Sorry for the long and a little bit venting post. I feel so tired and ready for any kind of break right now. Having the kids off from school for the rest of the week and parent teacher conferences and trying to squeeze in a meeting with my primary leaders to make sure we are all prepared for our primary program on Sunday isn't exactly a break, but by the end of next week it looks hopeful. :) Thanks for your prayers. . .
Sunday, November 4, 2012
October 31st - Still week 31 + Amazing News
Yes, we went to the clinic on Halloween! Last week the nurses told us about all the fun stuff that they do, so I decided that it would be okay to do chemo on Halloween.
Well, Kayla decided to be a princess for Halloween, so she wore her costume and brought her plastic pumpkin for trick or treating. Most of the nurses and staff were dressed up and had a bowl of candy by their station, so as Kayla got checked in and accessed, she was able to trick or treat along the way. Unfortunately, I didn't get any pictures. . . I was busy carrying around an infant car seat, diaper bag, and bag of stuff to keep us busy all day, etc.
We went in to talk to Marnie and have the usual check-up. Marnie was optimistic that Kayla would make her blood counts that day and be able to have her chemo. . .but when the numbers came back her platelets were at 86. Sigh. I was happy that her platelets had come up so far from last week (58). They need to be 100, so I think she'll be good for next week. Marnie did tell me that she'd talk to Dr. Hansen about how long we just wait for her counts to go up or if he would want to start a lower dose of chemo. She called me back later that day and told me that Dr. Hansen wanted to wait until her platelets were up to 100 and do the full dose of chemo.
Marnie also told me about the Brain Tumor Conference that went on last week. She started out telling me that at this particular conference, everyone who was supposed to be there was there (. . . except for Dr. Hansen, who was on vacation), where normally not everyone makes it. There were oncologists, neurologists, radio-neurologists, ophthalmologists, probably other types of doctors, nurses, school teachers, the music therapist, and just about everyone who can possibly help out with every situation that someone with a brain tumor might need.
So, this group of highly trained professionals spend time talking about each case. They looked at Kayla's MRI and spent a lot of time discussing her condition. What they found from the MRI is that her tumor has shrunk so much that it is almost GONE. Her optic chiasim, where the main mass of the tumor is, is "nearly normal." Kayla the small spots or tumors along her entire optic nerves, which is what caused the doctors to think she has neurofibromatosis, are COMPLETELY GONE.
Optic gliomas typically do not change in size very quickly. We have been told many times not to expect to see any change in size until we are comparing MRIs from a year to a year and a half apart. So far, it's been 6 months and both MRIs have shown a decrease in size that is very noticeable. Especially this last one where the tumor is almost gone. The group at the conference could not come up with any real explanation. They talked about a possible mis-diagnosis and that it might be something else. But, no one could think of anything else that it could possibly be. The only suggestion came from the radio-neurologist: "the treatment is working."
I can think of a few other explanations. . . back at the beginning of this whole experience, our bishop gave Bryson and I each a blessing. He told us that we would see miracles throughout this journey. We totally have. I know that the many many prayers you all have said in our behalf have been heard. THANK YOU!! I am very anxious to see what the next 6 months have in store for us.
P.S.
We also celebrated Kayla's 5th birthday on the 30th! Happy Birthday sweet girl!!
Well, Kayla decided to be a princess for Halloween, so she wore her costume and brought her plastic pumpkin for trick or treating. Most of the nurses and staff were dressed up and had a bowl of candy by their station, so as Kayla got checked in and accessed, she was able to trick or treat along the way. Unfortunately, I didn't get any pictures. . . I was busy carrying around an infant car seat, diaper bag, and bag of stuff to keep us busy all day, etc.
We went in to talk to Marnie and have the usual check-up. Marnie was optimistic that Kayla would make her blood counts that day and be able to have her chemo. . .but when the numbers came back her platelets were at 86. Sigh. I was happy that her platelets had come up so far from last week (58). They need to be 100, so I think she'll be good for next week. Marnie did tell me that she'd talk to Dr. Hansen about how long we just wait for her counts to go up or if he would want to start a lower dose of chemo. She called me back later that day and told me that Dr. Hansen wanted to wait until her platelets were up to 100 and do the full dose of chemo.
Marnie also told me about the Brain Tumor Conference that went on last week. She started out telling me that at this particular conference, everyone who was supposed to be there was there (. . . except for Dr. Hansen, who was on vacation), where normally not everyone makes it. There were oncologists, neurologists, radio-neurologists, ophthalmologists, probably other types of doctors, nurses, school teachers, the music therapist, and just about everyone who can possibly help out with every situation that someone with a brain tumor might need.
So, this group of highly trained professionals spend time talking about each case. They looked at Kayla's MRI and spent a lot of time discussing her condition. What they found from the MRI is that her tumor has shrunk so much that it is almost GONE. Her optic chiasim, where the main mass of the tumor is, is "nearly normal." Kayla the small spots or tumors along her entire optic nerves, which is what caused the doctors to think she has neurofibromatosis, are COMPLETELY GONE.
Optic gliomas typically do not change in size very quickly. We have been told many times not to expect to see any change in size until we are comparing MRIs from a year to a year and a half apart. So far, it's been 6 months and both MRIs have shown a decrease in size that is very noticeable. Especially this last one where the tumor is almost gone. The group at the conference could not come up with any real explanation. They talked about a possible mis-diagnosis and that it might be something else. But, no one could think of anything else that it could possibly be. The only suggestion came from the radio-neurologist: "the treatment is working."
I can think of a few other explanations. . . back at the beginning of this whole experience, our bishop gave Bryson and I each a blessing. He told us that we would see miracles throughout this journey. We totally have. I know that the many many prayers you all have said in our behalf have been heard. THANK YOU!! I am very anxious to see what the next 6 months have in store for us.
P.S.
We also celebrated Kayla's 5th birthday on the 30th! Happy Birthday sweet girl!!
Monday, October 29, 2012
Picture Perfect
Friday night was our ward Trunk or Treat. Somehow we managed to get all of the kids into costume. :) Nathan is a football fan, Lily is Laura Ingalls (NOT a pioneer. . .she had to correct everyone), Kayla was a dinosaur (last minute change from princess), and Benson was a pumpkin. They had a lot of fun. Benson keeps asking me if we can do Halloween again. He is a fan of the candy. :)
Sadie Ballerina slept through the entire thing, so no one even got to see her cute costume. I know this picture doesn't show the whole thing, but I loved the close up of her. She is the sweetest.
Miraculously, I got a picture of all of the kids before church (9AM church, but we try to go at least by 8:30AM to get everything ready for Primary).
And then today I had to get a picture of me and Sadie. I think the only one of the two of us is right after she was born. . .plus, we were both dressed up. . .
We took the kids to the Boise Temple Open House this morning. It was so beautiful. Bryson took the time to take Nathan last Wednesday and Lily last Thursday to the temple. That way they each got to have some one on one time with daddy and have their own temple experience. Benson behaved pretty well for a 2 year old and Sadie slept the whole trip away.
The girls wanted a picture by the pretty flowers. We are friends with the temple gardener, so they thought that was pretty special to see all that he does to make the temple grounds beautiful.
And that is what we've been up to this past week. :)
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