Friday Kayla had a follow-up appointment with the Audiologist to monitor her hearing. So far, she has tested normal, but since the chemo can damage hearing, the doctor wants to see her every two months.
So, Friday, we went to the appointment. Kayla did great. The doctor told her that she is so good it is like testing an adult. We go into a high frequency sound booth and sit quietly for about a half hour and she wears headphones and signals every time she hears a little bird noise. I had Sadie with me and she was a little harder this time to keep quiet and entertained. She distracted Kayla a couple times by trying to grab the earphones. :) I had Kayla sitting on one leg and Sadie on the other, so it was kind of hard to keep them separate. I think I'm going to have to leave her with someone next time.
After all of the testing, the doctor told me that Kayla is testing great. There was only one pitch (a very high one) that she tested at a hearing loss level, but the audiologist assured me that it was very minor and all of the normal pitches range were normal. And then we set up another appointment and were on our way.
Sunday, April 28, 2013
Tuesday, April 23, 2013
April 23rd - Week 49!
Well, I had a close one this week. I couldn't find anyone to watch Benson, so by late last night I figured I'd just take him with us. I've done it before, but it does make things more difficult. But I am getting a little weary of asking people to watch him all day every week. Thankfully, another friend in my ward texted me at around 9:30PM asking if I had found anyone to watch him and that she could. THANK YOU!
So, this morning, we got all ready, dropped Benson off and headed to Boise. Kayla got checked in - and she even let the nurse get her height . . . with a mark on the wall, not with the actual handy simple device they have to measure it. But, she did it very easily. I do still hold her while she gets weighed. . . just in case you were wondering. Ha ha.
While Kayla was getting accessed, nurse Heather told me again how happy she was to see Kayla's results and that she had told some of the other nurses. This Thursday is the Brain Tumor Conference, so I am very anxious to hear what they discuss about Kayla's case next week when go back in.
Today we met with Dr. Camillo . . not my favorite, but he is nice. I told him how Kayla had been doing and about her MRI. I think he looked up the results while we were in there and he was very surprised and happy at them. He said that is very uncommon for a tumor to go completely away.
In the chemo suite, we were pretty low key. We watched Mulan and Tangled. I was tired and didn't feel like trying to do other activities with Kayla, and she was pretty quiet, too. We did to the games on her lunch tray place mat, though. The time went by fairly quickly, because they hooked up Kayla's fluids as soon as they accessed her. That always saves a bunch of time. I was surprised they did that though, because today was the first day of her next 6 week cycle (second to last!) and chemo depended on her blood counts. I forgot to mention that earlier, but her platelets were 120 and her neutrophils were 2370. Yay! This was the first time in awhile that she has made counts the first time when starting a new cycle. It would be so nice to get through these last 12 weeks with no delays. . . knock on wood.
We did take a bathroom and walk around the hallway break and ran into Dr. Hansen and Dr. Camillo. Dr. Camillo pointed at Kayla and said to Dr. Hansen, "Complete Response." I took that to mean, "Treatment worked and there is no tumor left." Dr. Hansen was surprised and happy, too. He hadn't seen the results of the MRI yet. He said that he had never seen that happen before! We get to meet with him next week when we come in. That will be great because we can talk about the Brain Tumor Conference and I can ask him what this means about the future for Kayla. Lots of blessings coming our way!
So, this morning, we got all ready, dropped Benson off and headed to Boise. Kayla got checked in - and she even let the nurse get her height . . . with a mark on the wall, not with the actual handy simple device they have to measure it. But, she did it very easily. I do still hold her while she gets weighed. . . just in case you were wondering. Ha ha.
While Kayla was getting accessed, nurse Heather told me again how happy she was to see Kayla's results and that she had told some of the other nurses. This Thursday is the Brain Tumor Conference, so I am very anxious to hear what they discuss about Kayla's case next week when go back in.
Today we met with Dr. Camillo . . not my favorite, but he is nice. I told him how Kayla had been doing and about her MRI. I think he looked up the results while we were in there and he was very surprised and happy at them. He said that is very uncommon for a tumor to go completely away.
In the chemo suite, we were pretty low key. We watched Mulan and Tangled. I was tired and didn't feel like trying to do other activities with Kayla, and she was pretty quiet, too. We did to the games on her lunch tray place mat, though. The time went by fairly quickly, because they hooked up Kayla's fluids as soon as they accessed her. That always saves a bunch of time. I was surprised they did that though, because today was the first day of her next 6 week cycle (second to last!) and chemo depended on her blood counts. I forgot to mention that earlier, but her platelets were 120 and her neutrophils were 2370. Yay! This was the first time in awhile that she has made counts the first time when starting a new cycle. It would be so nice to get through these last 12 weeks with no delays. . . knock on wood.
We did take a bathroom and walk around the hallway break and ran into Dr. Hansen and Dr. Camillo. Dr. Camillo pointed at Kayla and said to Dr. Hansen, "Complete Response." I took that to mean, "Treatment worked and there is no tumor left." Dr. Hansen was surprised and happy, too. He hadn't seen the results of the MRI yet. He said that he had never seen that happen before! We get to meet with him next week when we come in. That will be great because we can talk about the Brain Tumor Conference and I can ask him what this means about the future for Kayla. Lots of blessings coming our way!
Busy Day, and GREAT News!
Last Wednesday was a very full and busy day. We started out getting up and ready quickly so we could go out to the school and get Kayla all registered for Kindergarten. It went pretty quickly since I had the paperwork all filled out already. We met with the bus guy and then in to talk to the Kindergarten teachers. I told the teacher a little about Kayla's condition and the biggest thing we do is hand washing. She will (hopefully) have a good month and a half off of chemo when school starts, so her immune system will be building back up. The teacher was very nice and I know that she will be aware of Kayla as much as she can.
Next we went in to meet with the nurse. I had a longer talk with her. She was interested in Kayla's situation and diagnosis and more of the details. The nurse said that in her twenty years of being a school nurse, she had seen two optic gliomas. When I told her that Kayla had been getting chemo for over a year now, she was amazed with how great she looked. We talked about sending a letter out to the kids in Kayla's class that talked about if they had any strange illnesses to stay home or make us aware or something. Anyway, she was super nice and gave me her personal cell phone number. She wants me to call her before school starts to give her an update on how Kayla is doing.
Once we were done with that, we hurried home (where I had left Benson and Sadie with Bryson, thankfully) grabbed the other two, dropped Benson off at a friend's house and headed to Boise to an appointment with Dr. Lee, Kayla's ophthalmologist.
Kayla did great whispering the letters into my ear that she saw on the screen. Dr. Lee told me that her eyes are still very stable. Good. :) Her right eye is 20/20 still and her left eye is still very bad. She could see when the nurse held up two fingers right in front of her face.
I asked Dr. Lee if she had seen Kayla's MRI results yet. I knew she would get them and we hadn't been to the clinic yet. So, she looked them up and found them. She told me I was going to like them. After she read them out loud, I had to clarify what I had just heard. There was no tumor detected in her head at all. Nothing left. At all. YAHOOOOO!! I was in shock for a little while and had a few tears slip out of my eyes.
Right after that appointment, we hurried over to the clinic. Kayla was getting Pentamidine. I had called Bryson and told him the good news and while we were in the lobby waiting to get checked in it hit me a little harder and I couldn't stop crying. I cried while she got checked in and then finally composed myself, and shared the great news on Facebook. :)
While nurse Heather was accessing Kayla's port I asked her if she had seen the MRI results. She hadn't so I shared the good news with her. She was shocked and very excited for us.
The visit went well, we chilled, watched Mulan and ate some snacks. It was a busy day there, so I didn't have a chance to tell many people, but I did tell Penny in the chemo suite and she gave me a big hug.
We have been so incredibly blessed this year. It hasn't been a walk in the park by any means, but I know that it could have been so much harder and so much worse. Thank you all for your prayers!!
Next we went in to meet with the nurse. I had a longer talk with her. She was interested in Kayla's situation and diagnosis and more of the details. The nurse said that in her twenty years of being a school nurse, she had seen two optic gliomas. When I told her that Kayla had been getting chemo for over a year now, she was amazed with how great she looked. We talked about sending a letter out to the kids in Kayla's class that talked about if they had any strange illnesses to stay home or make us aware or something. Anyway, she was super nice and gave me her personal cell phone number. She wants me to call her before school starts to give her an update on how Kayla is doing.
Once we were done with that, we hurried home (where I had left Benson and Sadie with Bryson, thankfully) grabbed the other two, dropped Benson off at a friend's house and headed to Boise to an appointment with Dr. Lee, Kayla's ophthalmologist.
Kayla did great whispering the letters into my ear that she saw on the screen. Dr. Lee told me that her eyes are still very stable. Good. :) Her right eye is 20/20 still and her left eye is still very bad. She could see when the nurse held up two fingers right in front of her face.
I asked Dr. Lee if she had seen Kayla's MRI results yet. I knew she would get them and we hadn't been to the clinic yet. So, she looked them up and found them. She told me I was going to like them. After she read them out loud, I had to clarify what I had just heard. There was no tumor detected in her head at all. Nothing left. At all. YAHOOOOO!! I was in shock for a little while and had a few tears slip out of my eyes.
Right after that appointment, we hurried over to the clinic. Kayla was getting Pentamidine. I had called Bryson and told him the good news and while we were in the lobby waiting to get checked in it hit me a little harder and I couldn't stop crying. I cried while she got checked in and then finally composed myself, and shared the great news on Facebook. :)
While nurse Heather was accessing Kayla's port I asked her if she had seen the MRI results. She hadn't so I shared the good news with her. She was shocked and very excited for us.
The visit went well, we chilled, watched Mulan and ate some snacks. It was a busy day there, so I didn't have a chance to tell many people, but I did tell Penny in the chemo suite and she gave me a big hug.
We have been so incredibly blessed this year. It hasn't been a walk in the park by any means, but I know that it could have been so much harder and so much worse. Thank you all for your prayers!!
Saturday, April 13, 2013
MRI #5
Just to update you from my last post. . . Kayla slept well that night, but still wasn't feeling good Thursday morning. She didn't have a fever, though. But, her head and stomach still hurt. She took a bath and afterwards, ran in and threw up. I was getting kind of worried by then and decided to call the clinic.
I told the nurse how Kayla had been the day before and that morning. She told me to watch her for the day and check back in if things got worse. Okay. I guess I was okay with that. Well, actually, I was a little disappointed. I wanted to go in and have a nurse or doctor check Kayla out and tell me that she was fine, or not fine. But, I figured I could wait and see how she did.
Very soon after I called, Kayla perked up and was running and playing around the house. Yay! She was fine for the rest of the day. Well, that was a relief!
So, Friday morning, Kayla woke up, got all dressed up (in a skirt, shirt and sweater) and kept asking me if it was time to go. Well.....we didn't need to leave until 11:30AM and she couldn't have anything to eat until after the MRI, which was scheduled for 2PM. Ugh, poor girl. She could have clear liquids until 11AM, though. So, after she found a rogue juice box in the pantry, she felt pretty satisfied. Kayla insisted having her hair all curled , too. :) So, we took our time getting ready. . . trying to pass the time. She made her own lunch to take with her and eat after she woke up from the MRI.
When we were all packed up and ready to go, we took off, dropped Benson off at a friend's house and headed to Boise. Just as I got going I realized that my tank was on empty. That is a very shameful thing in my family. . . sorry, dad. We always gas up with the tank is on half. But, after so many trips to Boise, I just didn't get it filled. So, then I also realize that I didn't have my wallet. Ugh. We were going to be on time. Bryson was working at home, though, so I called him and he grabbed my wallet and met us at the gas station. Sometimes I think things like that happen just to make these posts a little more interesting. Ha ha.
Once we gassed up, it was 11:50AM. Great, I hate being late. We were supposed to be at the clinic at noon to get Kayla's port accessed. I figured we be okay, though, as long as we made it to hospital on time--at 12:45PM.
When we got there, I grabbed the stroller out of the trunk for Sadie and we hurried inside. Kayla got accessed, no problem and we got to say hi to everyone, since it had been a whole three days since we saw them. ;) I did have a thought after our visit on Tuesday about Kayla getting Pentamadine, though. I thought she was close to being due for it and with next week being an off week, it would be great timing to have her
get that. So I got it all worked out and scheduled with Dana and the nurse for next Wednesday, since we will be in Boise already to see Dr. Lee. It will be a busy day. :)
Next we headed over to the hospital and got there right at 12:45PM. We got registered and they took us right back to MRI check-in. We ended up waiting in there for at least 20 minutes until the nurse came and took us back to the prep room. He was a very nice nurse and spent a lot of time smiling and playing with Sadie. :) She is quite the charmer. Anyway, he asked questions, gave Kayla a gown, and helped her decorate a gas mask. She would be put to sleep through her port, but once she was asleep, they would use the mask. So, she chose chocolate flavored chapstick to put inside to make it smell good and put princess stickers on the outside.
We met with the anesthesiologist and he, too, was quite taken with Sadie. Kayla seemed good to go with everything. The child life person, Taylor came in to say hi, too. We have seen her each time we have come.
So, now all we did was wait for a little longer. Everyone there was always asking if we had any questions, or if she was okay with everything that would be going on and Kayla was just raring to go. She kept asking me if it was time yet. She was very anxious to eat, but she never once complained. Her MRI didn't get started until almost 2:30PM.
I normally walk Kayla to the door of the MRI room and then watch until she is asleep, but this time a nurse took me away once she was in the room. I was a little torn. I wanted to stay there so she could see me until she fell asleep. I probably should have insisted, but I followed him out and waited for transport to take me and Sadie down to the waiting room.
Sadie slept for most of the MRI, which was nice. I just ate lunch and read my book. Once Sadie woke up, I changed her diaper and then they were ready to take us back to Pediatric Recovery. The MRI lasted about an hour and a half.
Kayla was still asleep when we got back there, so I fed Sadie while we waited. Kayla woke up fairly quickly and was ready for a red popcicle. After that, she wanted her sandwich and chocolate chips that she packed. Once her stomach was satisfied, she let the nurse de-access her port and she got dressed and we were ready to go.
As we got out to the van, I noticed that I had left the trunk wide open. Whoops! I was in such a hurry when we got there that I totally didn't even notice. I was glad that that time we didn't park at the bottom of the parking garage, but we were on top out in the open. Nothing was missing. There wasn't really anything to take except a bunch of carseats. ;) So, that was nice. I still was in shock that I had done that. Oh, well.
Now we wait for results! Thank you for all of your prayers!
I told the nurse how Kayla had been the day before and that morning. She told me to watch her for the day and check back in if things got worse. Okay. I guess I was okay with that. Well, actually, I was a little disappointed. I wanted to go in and have a nurse or doctor check Kayla out and tell me that she was fine, or not fine. But, I figured I could wait and see how she did.
Very soon after I called, Kayla perked up and was running and playing around the house. Yay! She was fine for the rest of the day. Well, that was a relief!
So, Friday morning, Kayla woke up, got all dressed up (in a skirt, shirt and sweater) and kept asking me if it was time to go. Well.....we didn't need to leave until 11:30AM and she couldn't have anything to eat until after the MRI, which was scheduled for 2PM. Ugh, poor girl. She could have clear liquids until 11AM, though. So, after she found a rogue juice box in the pantry, she felt pretty satisfied. Kayla insisted having her hair all curled , too. :) So, we took our time getting ready. . . trying to pass the time. She made her own lunch to take with her and eat after she woke up from the MRI.
When we were all packed up and ready to go, we took off, dropped Benson off at a friend's house and headed to Boise. Just as I got going I realized that my tank was on empty. That is a very shameful thing in my family. . . sorry, dad. We always gas up with the tank is on half. But, after so many trips to Boise, I just didn't get it filled. So, then I also realize that I didn't have my wallet. Ugh. We were going to be on time. Bryson was working at home, though, so I called him and he grabbed my wallet and met us at the gas station. Sometimes I think things like that happen just to make these posts a little more interesting. Ha ha.
Once we gassed up, it was 11:50AM. Great, I hate being late. We were supposed to be at the clinic at noon to get Kayla's port accessed. I figured we be okay, though, as long as we made it to hospital on time--at 12:45PM.
When we got there, I grabbed the stroller out of the trunk for Sadie and we hurried inside. Kayla got accessed, no problem and we got to say hi to everyone, since it had been a whole three days since we saw them. ;) I did have a thought after our visit on Tuesday about Kayla getting Pentamadine, though. I thought she was close to being due for it and with next week being an off week, it would be great timing to have her
get that. So I got it all worked out and scheduled with Dana and the nurse for next Wednesday, since we will be in Boise already to see Dr. Lee. It will be a busy day. :)
Next we headed over to the hospital and got there right at 12:45PM. We got registered and they took us right back to MRI check-in. We ended up waiting in there for at least 20 minutes until the nurse came and took us back to the prep room. He was a very nice nurse and spent a lot of time smiling and playing with Sadie. :) She is quite the charmer. Anyway, he asked questions, gave Kayla a gown, and helped her decorate a gas mask. She would be put to sleep through her port, but once she was asleep, they would use the mask. So, she chose chocolate flavored chapstick to put inside to make it smell good and put princess stickers on the outside.
We met with the anesthesiologist and he, too, was quite taken with Sadie. Kayla seemed good to go with everything. The child life person, Taylor came in to say hi, too. We have seen her each time we have come.
So, now all we did was wait for a little longer. Everyone there was always asking if we had any questions, or if she was okay with everything that would be going on and Kayla was just raring to go. She kept asking me if it was time yet. She was very anxious to eat, but she never once complained. Her MRI didn't get started until almost 2:30PM.
I normally walk Kayla to the door of the MRI room and then watch until she is asleep, but this time a nurse took me away once she was in the room. I was a little torn. I wanted to stay there so she could see me until she fell asleep. I probably should have insisted, but I followed him out and waited for transport to take me and Sadie down to the waiting room.
Sadie slept for most of the MRI, which was nice. I just ate lunch and read my book. Once Sadie woke up, I changed her diaper and then they were ready to take us back to Pediatric Recovery. The MRI lasted about an hour and a half.
Kayla was still asleep when we got back there, so I fed Sadie while we waited. Kayla woke up fairly quickly and was ready for a red popcicle. After that, she wanted her sandwich and chocolate chips that she packed. Once her stomach was satisfied, she let the nurse de-access her port and she got dressed and we were ready to go.
As we got out to the van, I noticed that I had left the trunk wide open. Whoops! I was in such a hurry when we got there that I totally didn't even notice. I was glad that that time we didn't park at the bottom of the parking garage, but we were on top out in the open. Nothing was missing. There wasn't really anything to take except a bunch of carseats. ;) So, that was nice. I still was in shock that I had done that. Oh, well.
Now we wait for results! Thank you for all of your prayers!
Wednesday, April 10, 2013
What to do. . .
So, this morning, Kayla woke up not feeling very well. She said her head hurt and her ears hurt. Ugh. Not good. I felt her forehead and she felt a little warm so I took her temperature. This is very embarrassing, but I am so bad at taking temperatures. I think I need someone to show me how to do it accurately. You'd think with 5 kids now, I'd be a pro. We did get a nice digital thermometer when all this happened with Kayla and I can just stick it in her ear. But, I still wonder how accurate it is. It read 102.something. Eek. So, once the kids were on the bus (barely. . . Nathan had to run to the next stop to catch the bus!) and everyone else was taken care of, I went upstairs to get ready. I was thinking that I might need to take Kayla in to the clinic or hospital.
After I was ready and went back downstairs, I took her temperature again. It said 101.something. Then she said that her ears felt better. So, I thought we'd hold off going in. All throughout the day I was taking her temperature and debating what to do. She actually seemed pretty good for most of the day. We played a couple games and made banana bread and her temperature sometimes read 99.something and sometimes 101.something. But she seemed to be feeling alright. That is where I was torn. I have been told to call and bring her in if she has a temperature of 101.
But, then Nathan and Lily got home from school and the afternoon craziness began and Benson was not feeling well either and needed to be held all afternoon. Kayla seemed to be fine and ate dinner with us, but was still a little tired. She didn't feel very warm anymore, though.
Around dinner time, a nurse from the hospital called me to give me instructions about her MRI on Friday. She asked if Kayla had been sick anytime in the past two weeks. I told her that Kayla had been a little warm today and that I had been watching her closely. She told me that if she still has a fever tomorrow, we will need to reschedule the MRI. They will not put anyone under anesthesia if they have a chance of having any sickness in them because when you are under anesthesia, you body's defenses are completely down.
The MRI and Kayla's next appointment with Dr. Lee (her Ophthalmologist) are scheduled perfectly though, so Dr. Lee will be able to see Kayla in person and her MRI results right before the next Brain Tumor Conference and she could have a good insight on Kayla' condition. So, I am really hoping not to postpone the MRI.
So, tonight, we called our home teacher and had him come over and help Bryson give Kayla a priesthood blessing. This was the first time Kayla was okay about it and even said that she wanted one. She is growing up a lot. We would appreciate any extra prayers right now. :) If my however trustworthy thermometer still reads 101 in the morning then I will take her in to the clinic, just to make sure. But, I also hope that nothing flares up in the middle of the night. . .
After I was ready and went back downstairs, I took her temperature again. It said 101.something. Then she said that her ears felt better. So, I thought we'd hold off going in. All throughout the day I was taking her temperature and debating what to do. She actually seemed pretty good for most of the day. We played a couple games and made banana bread and her temperature sometimes read 99.something and sometimes 101.something. But she seemed to be feeling alright. That is where I was torn. I have been told to call and bring her in if she has a temperature of 101.
But, then Nathan and Lily got home from school and the afternoon craziness began and Benson was not feeling well either and needed to be held all afternoon. Kayla seemed to be fine and ate dinner with us, but was still a little tired. She didn't feel very warm anymore, though.
Around dinner time, a nurse from the hospital called me to give me instructions about her MRI on Friday. She asked if Kayla had been sick anytime in the past two weeks. I told her that Kayla had been a little warm today and that I had been watching her closely. She told me that if she still has a fever tomorrow, we will need to reschedule the MRI. They will not put anyone under anesthesia if they have a chance of having any sickness in them because when you are under anesthesia, you body's defenses are completely down.
The MRI and Kayla's next appointment with Dr. Lee (her Ophthalmologist) are scheduled perfectly though, so Dr. Lee will be able to see Kayla in person and her MRI results right before the next Brain Tumor Conference and she could have a good insight on Kayla' condition. So, I am really hoping not to postpone the MRI.
So, tonight, we called our home teacher and had him come over and help Bryson give Kayla a priesthood blessing. This was the first time Kayla was okay about it and even said that she wanted one. She is growing up a lot. We would appreciate any extra prayers right now. :) If my however trustworthy thermometer still reads 101 in the morning then I will take her in to the clinic, just to make sure. But, I also hope that nothing flares up in the middle of the night. . .
April 9th - Week 47 - Off Week
Even though I enjoy going to the clinic and spending the day with all the nurses and staff there, I really enjoy Kayla's off weeks, too. We went in on Tuesday, not needing to pack for the entire day or even find a sitter for Benson. We just brought him along. He likes to come with us and I don't mind bringing him--on short days. :)
Things went pretty smoothly getting there, checking in, getting accessed and meeting with Marnie. Everything looks good, Kayla is doing great and we don't need to come in next week (yay!) unless she gets sick or something. Her platelets were at 160 (good) and her neutrophils (infection fighters) were 2500! They haven't been that high for a really long time. Kayla's next MRI is on Friday, so I asked the nurse, Heather, about coming to the clinic first to get Kayla's port accessed before we go over to check in at the hospital. She said it would be no problem, so we scheduled that.
And we were on our way home. Nice.
Monday, April 8, 2013
Weekend Wedding
We got to have a lot of excitement over Spring Break. After Kayla's treatment on March 26th, we went to Grandma and Grandpa's house. My baby sister was getting married on the 30th.
Everyone was very excited in the car. . . at least part of the way. :)
It rained on us a lot, but we got to see a lot of rainbows! They were huge and beautiful. Benson asks me several times a day now if there are rainbows outside.
I volunteered to make the cupcakes for the reception. . . I thought they turned out pretty good. Especially, since I had no experience with the fancy frosting!
The girls enjoyed taste testing the frosting
Benson and cousin Brooks had fun exploring grandma's huge yard. This was the best picture I got of them. . . ha ha.
And here come the newlyweds out of the Columbia River Temple! Everything went beautifully. We are excited to have Preston in the family. In fact, as soon as they came out, Nathan was telling Benson, "Hey Benson, now we have a new uncle!"
The boys were REALLY excited about taking pictures afterwards.
Kayla and Kate had fun pretending they were the bridesmaids.
Me and Benson
Here's how the cupcake tower turned out at the reception.
My sister, Lori, who is serving a mission for our church right now, got to be there in cardboard. . . the photographer took a picture of all of us sisters, including Lori. I am looking forward to seeing how that one turned out!
The next day was Easter, so we had a quick hunt in grandma's big yard before we headed home.
I know I am missing pictures of even my own family, but theses were some highlights of our weekend. It was a lot of fun to see my family and it was the first time we have traveled out of town since last August! Hopefully, when Kayla's treatments are done, we'll be able to get out more. :)
Wednesday, April 3, 2013
April 2nd - Week 46
We are really counting down the weeks now! It's kind of crazy! This past Tuesday, Lily and Nathan were back in school and Benson went to a friend's house, so it was just the usual crew at the clinic, Kayla, Sadie and me. And I remembered to put sleepy cream on Kayla's port before we left. :) We had to leave by 8:15AM, and I did not get things packed the night before, so the morning went by pretty quickly, but we got there on time.
I was looking forward to this visit, because we were going to see Dr. Hansen. I had asked Dana, the scheduling person, a few weeks ago if we could see him sometime, so she scheduled us a few weeks in advance to be able to meet with him.
While we were meeting with Dr. Hansen, I told him that the new anti-nausea medication had made my life 100 times easier. :) He was happy about that. I also asked him about Kayla starting Kindergarten next fall. She should finish her chemo sometime in July (unless we have more delays. . . ), so I wondered if that would affect school. He told me that her immune system will not be back to normal until December or January. But, he does believe that starting school is a good risk that he encourages taking. It would be nice if she had a good two months of no chemo before school starts, but she is in a big family with germs flying around everywhere anyway, so she should be okay. I was glad to hear that. Once her 60 weeks are up, her blood will only be recovering, so each week it will be getting higher without being knocked down again with more chemo.
The rest of the day actually felt like it went quickly. The nurse started Kayla's fluids as soon as she was accessed, so that always saves us a lot of time. Plus with it being the 4th week of a cycle, she only gets the carboplatin. The vincristine only takes about 15 minutes anyway, but that is still 15 minutes saved!
We watched Mulan (Kayla's first time), ate lunch outside on the patio (love the nice weather!) and played some games. Kayla and I played Hide and Seek. She wanted to hide first, so I counted. It's pretty difficult to find a good spot to hide, 1) because it is a very small patio and 2) Kayla has a bright blue and yellow IV pole that she is connected to the whole time. But, she found a good spot to hide. In fact, she thought it was so good, that each time she hid, she went to that same spot. :) She kept telling me how good it was, so she'd just keep hiding there. Funny girl. :)
Kayla also played basketball with Miss Jenn and Miss Gabby (a new nurse). A quick funny story: the ball that came with that hoop needed to be blown up, but Jenn didn't have a needle for the pump. Being at a medical clinic, Jessica (another child life person) told us that they just use a large blundt needle and the oxygen that comes out of the wall. So, Miss Penny called someone to bring her some needles and they worked very hard on getting that ball pumped up (which we didn't end up using). We know they love us there. :)
And before we knew it, her pump was beeping, saying she was done. Yay! Another week down!
I was looking forward to this visit, because we were going to see Dr. Hansen. I had asked Dana, the scheduling person, a few weeks ago if we could see him sometime, so she scheduled us a few weeks in advance to be able to meet with him.
While we were meeting with Dr. Hansen, I told him that the new anti-nausea medication had made my life 100 times easier. :) He was happy about that. I also asked him about Kayla starting Kindergarten next fall. She should finish her chemo sometime in July (unless we have more delays. . . ), so I wondered if that would affect school. He told me that her immune system will not be back to normal until December or January. But, he does believe that starting school is a good risk that he encourages taking. It would be nice if she had a good two months of no chemo before school starts, but she is in a big family with germs flying around everywhere anyway, so she should be okay. I was glad to hear that. Once her 60 weeks are up, her blood will only be recovering, so each week it will be getting higher without being knocked down again with more chemo.
The rest of the day actually felt like it went quickly. The nurse started Kayla's fluids as soon as she was accessed, so that always saves us a lot of time. Plus with it being the 4th week of a cycle, she only gets the carboplatin. The vincristine only takes about 15 minutes anyway, but that is still 15 minutes saved!
We watched Mulan (Kayla's first time), ate lunch outside on the patio (love the nice weather!) and played some games. Kayla and I played Hide and Seek. She wanted to hide first, so I counted. It's pretty difficult to find a good spot to hide, 1) because it is a very small patio and 2) Kayla has a bright blue and yellow IV pole that she is connected to the whole time. But, she found a good spot to hide. In fact, she thought it was so good, that each time she hid, she went to that same spot. :) She kept telling me how good it was, so she'd just keep hiding there. Funny girl. :)
Kayla also played basketball with Miss Jenn and Miss Gabby (a new nurse). A quick funny story: the ball that came with that hoop needed to be blown up, but Jenn didn't have a needle for the pump. Being at a medical clinic, Jessica (another child life person) told us that they just use a large blundt needle and the oxygen that comes out of the wall. So, Miss Penny called someone to bring her some needles and they worked very hard on getting that ball pumped up (which we didn't end up using). We know they love us there. :)
And before we knew it, her pump was beeping, saying she was done. Yay! Another week down!
Miss Sadie and her multiple arm rolls:
Kayla playing basketball
March 26th - Week 45
Well this week was Spring Break for Nathan and Lily. Lily was excited to come to the clinic with us and Nathan was going to play at a friend's house for the morning and then go see The Hobbit with Bryson. With it being a week off from school, I had a hard time finding a place for Benson to go. Many people were either out of town, or had their own bunch of kiddos home and I didn't want to ask, so I ended up taking Benson with me, too.
I was feeling good about how quickly I got everything and everyone together and on the road. Just as we got on the freeway, Kayla said, "How come we didn't do sleepy cream?" Whoops! Not again! I was not going to add an extra hour to our clinic visit that day, so I called Bryson and asked him to meet us part way and bring the sleepy cream, tape, and Glad Press and Seal. So, we got off the next exit and went back. We met Bryson in a parking lot and got Kayla's sleepy cream (numbing cream) on her port. And then we were back on the road. :)
We got to the clinic, checked in and accessed, and met with Marnie. Lily was happy to stay and do a project with Miss Jenn through all of that, but Benson wanted to stick with us. I am glad that it is a Pediatric clinic. . . everyone is always very accommodating when you have extra kiddos hanging around.
Kayla's platelets were great, over 400, and her neutrophils were at 750 - kind of low, but still high enough to get chemo. They were giving her 75% of her normal dose that day and the next week because of her counts being so low before. When she starts the next cycle, they will bump it back up to the normal dose.
Other than that, Kayla looks great and is doing great.
So, we all headed back to the chemo suite (which is like half the size because of construction. . . I was hoping for a slow day in there). We did get our usual spot on the bed, so that was nice to have our own little corner. With all four kids, it was going to be a long day. We started off watching Toy Story, since I knew that would keep Benson occupied and happy. And it did.
Miss Jenn did a great job of keeping the kids happy, and that was so helpful. She got out a big Hexbug set for Benson to play with and some preschool coloring for the girls to play school with. We also played Sequence Junior, Headbandz, and more Hexbugs. The kids all ate lunch on the bed, Lily and Benson cleaned up any of Kayla's leftovers. Sadie did pretty good the whole time, too. It ended being a really long day, though, so by the end, everyone was cranky and ready to go. We had left at 8:30AM and it was about 4:30PM when we got home. I was very grateful to have dinner delivered to me that night!
I was feeling good about how quickly I got everything and everyone together and on the road. Just as we got on the freeway, Kayla said, "How come we didn't do sleepy cream?" Whoops! Not again! I was not going to add an extra hour to our clinic visit that day, so I called Bryson and asked him to meet us part way and bring the sleepy cream, tape, and Glad Press and Seal. So, we got off the next exit and went back. We met Bryson in a parking lot and got Kayla's sleepy cream (numbing cream) on her port. And then we were back on the road. :)
We got to the clinic, checked in and accessed, and met with Marnie. Lily was happy to stay and do a project with Miss Jenn through all of that, but Benson wanted to stick with us. I am glad that it is a Pediatric clinic. . . everyone is always very accommodating when you have extra kiddos hanging around.
Kayla's platelets were great, over 400, and her neutrophils were at 750 - kind of low, but still high enough to get chemo. They were giving her 75% of her normal dose that day and the next week because of her counts being so low before. When she starts the next cycle, they will bump it back up to the normal dose.
Other than that, Kayla looks great and is doing great.
So, we all headed back to the chemo suite (which is like half the size because of construction. . . I was hoping for a slow day in there). We did get our usual spot on the bed, so that was nice to have our own little corner. With all four kids, it was going to be a long day. We started off watching Toy Story, since I knew that would keep Benson occupied and happy. And it did.
Miss Jenn did a great job of keeping the kids happy, and that was so helpful. She got out a big Hexbug set for Benson to play with and some preschool coloring for the girls to play school with. We also played Sequence Junior, Headbandz, and more Hexbugs. The kids all ate lunch on the bed, Lily and Benson cleaned up any of Kayla's leftovers. Sadie did pretty good the whole time, too. It ended being a really long day, though, so by the end, everyone was cranky and ready to go. We had left at 8:30AM and it was about 4:30PM when we got home. I was very grateful to have dinner delivered to me that night!
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