Our Month of August

So, part of the purpose of this blog is to take the place of our family blog temporarily.  I have not been very good at all at keeping up with other events besides Kayla's weekly appointments.   So, I am going to try to update a month a time with just some highlights of what our family has done.  We have been have fun times despite everything else going on. ;)

On the 3rd of August, Bryson and I celebrated our 11th anniversary!  We went miniature golfing and had a lot of fun.  I won. . . just like I did the last time we played.  . . . just over 11 years ago. ;)

 It's not very often that I get a picture with all of the kids (and Bryson).  They always have a lot of fun jumping on the trampoline together!

My younger sister, Lori, left on a mission for our church (The Church of Jesus Christ of Latter-Day Saints).  She will serve in the Nevada Reno Mission for 18 months.  I am so excited for her!  I am the oldest of 5 girls in my family (Lori is #4).  She is the first one in our family to serve a mission and I know that we will be blessed because of her commitment to share the gospel.

As I mentioned in my last post, Bryson's grandma passed away a couple of weeks ago and we were able to go down to Salt Lake for her funeral.  We will miss Grandma Tate, but we know that she is in a much better place now with people that she loves.  

Here is Benson with Pa and Grammy. 

We spent one morning at BYU bowling with my sister-in-law, Christy and a few of her kiddos.  As you can see, Lily enjoyed it!

Nathan did a pretty good job, too. :)

Kayla and Benson even took turns rolling the ball down the lane.

I don't know how this happened. . . we were all a little out of practice.  I thought I had a good excuse with my center of gravity being very much altered.  But, hey, I pulled off a tie with Bryson anyway! 

 Nathan is playing flag football right now.  This was his first official game, last Saturday.  He is playing center and is really enjoying it.

On Monday, the kids had their first day of school.  Nathan is a big 3rd grader this year!  When I showed him this picture, he said "Oh, I didn't know I looked like that. . . . cool."  He is such a character. 

Lily is so excited for 1st grade.  She gets to have her same teacher from last year because her teacher moved from kindergarten to 1st grade.  We love her and are so excited for this upcoming year!

 And that is about it.  We are ending the month with colds, unfortunately.  On the second day of school, Nathan, Lily, and I all woke up with sore throats.  I have been miserable and unable to breathe through my nose, and even Kayla has complained of a sore throat.  Augh!  I hope that we can fight this off before it gets too bad!  

August 28th - Weeks 23 & 24

So, Kayla had an appointment scheduled for the 23rd of August for a blood count check, but we found out the Friday before (the 17th) that Bryson's grandma had passed away that morning.  The funeral would be in Salt Lake City on Wednesday, the 22nd of August.  I was really glad that this happened to be an off week for Kayla because it was not a big deal to just reschedule her appointment.  The plan was to go in on the 22nd and check her blood counts.  If they were good, then we wouldn't have to come in the following week.  So, I just rescheduled her appointment for the following week, Tuesday, August 28th.  I was also glad about rescheduling because we got an appointment with Dr. Hansen, her actual doctor.

Yesterday, the 28th, was her appointment.  It always feels a little strange going on a short day.  We don't go into the chemo suite except to say hi to the nurses in there.  Anyway, we got her checked in, weighed, blood pressure, etc. and then her port accessed, which she is a pro at now.  Then we met with Dr. Hansen's nurse for a little bit before he came in.

I like to check in with Dr. Hansen when we can to run past him everything the other doctors or Marnie have told me.  I just trust his opinion more than anyone else's, I guess.  So, I asked him about starting physical therapy for Kayla's ankles.  He told me that he's check with some physical therapists to see what they thought.  If it would be helpful then, that would be great.  It wouldn't hurt, but if it isn't going to help, I'd like to avoid another weekly appointment.  The Vincristine has a side effect that weakens the ankles.  If Kayla gets to a point where she is having a really hard time walking, then he would probably stop using that drug as a part of her chemo regimen.  Strength in the ankles comes back once you are done with the drug, but Kayla has such a long time to go with it, I hope she can hold on to her strength.  She is doing fine with walking and running and playing, but sometimes trips and falls.  Which, that is hard for me to tell if it is from weaker ankles because she has always been my accident prone child who can fall flat on her face without any good reason at all. ;)

Dr. Hansen had also been researching Pentamidine a little bit.  Kayla gets that once a month through IV to prevent a certain kind of pneumonia.  He told me that when he was in Ohio, he was on a team researching if it is more effective given twice month rather than once a month.  Giving it to her twice a month would mean more time at the clinic and more times that it would probably be given with Zofran, which has a rare chance of some major heart problem side effects.  He isn't for sure yet on what he thinks is best, but he told me that he would look into that more and make a decision.

So, that was pretty much our visit.  I guess she will have another MRI coming up in October.  And I was looking at the calendar realizing that if she stays on schedule for the next 4 weeks, she will have the first 2 weeks of October off--which will be when I have my baby.  That would be GREAT timing. :)  

August 16th- Week 22

Today was Kayla's weekly chemo.  I dropped off Nathan, Lily and Benson at yet another friends' house (THANK  YOU!) and drove to Boise.  We had a pretty typical day, checking in, weight, blood pressure, temperature, and then down to the lab for accessing her port.  Kayla did great sniffing her chapstick and sucking her Dum Dum sucker to mask the smell and taste of the whole process.

We talked to Marnie, and Kayla did great taking deep breaths as she was examined.  There was nothing too exciting to talk about.  Kayla looks great and is doing great.

So, we were off to the chemo suite and on our way through a very long day.  She had an hour of fluids, then just the carboplatin today (which takes an hour), two hours of post hydration and then an hour of pentamidine (the antibiotic she gets once a month since she won't take it orally).

We colored, watched Snow White, did a little music with Miss Stephanie, ate lunch, colored, watched the rest of Snow White, played games, and colored.  I did finally lie down with her on the bed and rest a little bit, too.  For just laying around, it's an exhausting day!

She was very tired when we left and slept all the way home.  I gave her zofran in a little bit of root beer, hoping she would drink that.  But, even after asking for root beer, she didn't want to drink any.  She then asked for orange juice, so I got orange juice with zofran ready for her and she drank a little of that, but it was a huge ordeal to get her to drink the whole thing.  After an hour and a half, she had finally drunk all of her OJ (which was really a very small amount).  She'll need some more in the morning, so I hope it doesn't take all day to drink like it has the past couple of Fridays.  Whenever I ask Kayla if she'd rather drink her OJ or throw up, she chooses throw up.  That doesn't help much.

The next two weeks are short weeks, though!  Just blood count checks.  Yay!

More Time With Doctors

So, yesterday morning I had an appointment with my doctor.  Everything is great with the pregnancy and baby.  I am just over 32 weeks now and starting to countdown.  

My doctor asked if there was anything that they could do to help out with Kayla's situation.  I kind of jokingly said that it would be great if I could have the baby on a Friday so I could have the most time to recover before going to Kayla's treatment, since they are on Thursdays.  He was totally fine with that and said that if things are happening, I could definitely be induced on a Friday if that would help.  We'll see.  I am hoping I'll naturally go a little early since Benson was 9 days early.  

After lunch I was planning on taking the kids swimming.  Then Nathan came walking into the kitchen with blood on his hands saying, "Mommy, I'm bleeding."  He was pretty calm about it at first.  He told me that a weight fell on his head.  I grabbed some wet paper towels and found where the blood was coming from.  Right on the crown of his head.  It was bleeding pretty bad for a couple of minutes and then stopped pretty quickly.  I got the story from him. . . the kids had made a fort using my weights to hold the blankets in place. Well, of course, one of the blankets got pulled and a 15 lb weight rolled off of the desk and hit Nathan's head and then landed right on his hand on the ground.  So, along with his head, his last three fingers on his left hand hurt pretty badly.  

Great.  I was wondering if I should take him into the urgent care or something.  I put ice on his head and hand and thought that yeah, we should probably go in.  So, then things got a little chaotic because it was right at lunch time, so I knew I had to feed the kids and find someone to come over, or somewhere to take them. I still don't feel comfortable leaving Kayla at someone's house, so I tried all of my babysitters.  I already knew that one was sick.  Two were out of town and one was already watching her siblings.  Bummer.  So, then I was thinking of where I could take them.  I called a couple people that I thought I'd be okay leaving Kayla with, but no answer.  Other friends I knew were gone, on bedrest, or had sick kids, and I was feeling a little desperate.  

I finally called one friend and decided that I would just leave Lily and Benson.  She was home and able and a total lifesaver!  I took Nathan and Kayla to the urgent care and they got him right in.  There was a huge line in front of us, but I guess a head injury takes precedence. :)  Nathan didn't appear to have a concussion, but they needed to check out his fingers, too.  So, the nurse took us back to the procedure room and cleaned up his wound.  The doctor came in and looked at it and decided that a little glue would do the trick.  The laceration wasn't big enough to need a staple (hooray for that!).  So, she glued his cut together and then we waited for the x-ray guy to come back from lunch.  

When he got back, he took us back and took x-rays of Nathan's hand.  I thought it was funny that he recognized me from a few months ago when Benson was in getting chest x-rays when he had bronchiolitis.  

After the x-rays we went back to our room and waited for the results.  The doctor came in and told us that Nathan's fingers were not broken, just very bruised.  Also, no football practice for 2 days, at least, no haircut (which I was planning on doing that very morning but didn't get to it, ugh), no shower for 2 days, and to be looking for signs of concussion in the first 24 hours.  

Nathan was quite the trooper.  He was a little worried that cleaning his cut hurt, but he did fabulous and he said that it didn't really hurt.  I took this picture and when I told him that I would post it on facebook, he actually gave me a little smile. :)   He doesn't normally like to be in or smile for pictures.

So, that was that.  He was totally fine when we got home.  He was happy that he couldn't really use his fingers and that meant that he couldn't practice the piano.  

He slept fine last night and he was fine today-not even a headache.  His fingers are still a little sore, but they should heal quickly.  

So after that long day and all the kids are in bed. . . Lily came in to my room and handed me her spacer.  She had a tooth pulled a couple of years ago and they put a spacer in.  She told me that it fell out.  It looked kind of mangled, too.  Great.  So, now we get to go to the dentist.   Never a dull moment around here!

August 9th - Week 21

Last Thursday's treatment went really well.  Kayla did great with getting accessed and pretty good with Marnie when she was examined.  The nurse from last week was not there, thankfully, and the nurse that came in with Marnie was one that we know well and she had been the one to access Kayla's port that day.  

One thing that Marnie brought up was that Kayla's ankles were starting to get a little weaker (caused by the vincristine) and that we should start to think about taking her to physical therapy.  My first thought was great. . . another weekly appointment.  I do want to do the best thing for her, but between weekly chemo, my doctor's appointments which are now two weeks apart and soon to be every week, and anything else that comes up between the other three kids (soon to be four other) . . . that's a lot of time spent at doctor's appointments. 

Marnie did say that she knows things are busy for me right now and to just start thinking about starting whenever we feel ready and able.  Hopefully, that time will come when I feel ready and able! ;)

So, that day was a super busy day in the chemo suite.  There happened to be a little 5 year-old girl there who was going to be there all day and also liked our favorite spot.  Luckily, we got along really well and kind of shared the area.  She was so cute and Kayla soon became comfortable around her.  They colored together, ate lunch together, watched Snow White together, and we all played Candyland.  Her mom and grandma were there, too and I was able to talk to them quite a bit.  They were super nice and we shared our experiences with everything that has happened with our little girls.  I enjoyed the day very much.  When we left, I asked Kayla if she had fun and she very adamantly said, "Yes!"  I hope we will meet again with our new friends.   

Kayla did have a few minutes of music time with Stephanie on the bed at the beginning when she was still wanting some of her own space.  Here's a silly picture: 

It has been harder for me to get Kayla to drink her "orange juice" (with zofran) when we get home from the clinic.  She wasn't feeling good by dinner time and finally before she went to bed she finished drinking it.  She immediately felt better.  The next morning, though, she threw up several times and didn't feel good much of the time because she would not drink her OJ.  Sigh.  I hope this doesn't get harder or we might have to start staying longer again to get her second dose of zofran through her IV.  

August 2nd - Week 20

Wow! We are now one third of our way through Kayla's chemo. It is kind of exciting, but kind of discouraging. It has been long so far and we still have quite a ways to go.

 Our day started out a little earlier than we have been going lately. But, we made it to the clinic by 8:15AM and got started quickly. I like being one of the first ones there because we are sure to get our normal "spot" in the chemo suite. Kayla did great getting checked in (blood pressure, temperature, weight, height) except I need to work on having her stand on the scale alone. She still insists on me holding her and standing on the scale and then I stand on it alone. The only thing is that she is over 40 pounds now and it's getting harder for me to hold her (because of being pregnant).

 We met with Marnie, the nurse practioner again. We hadn't met with her for a few weeks. She had a nurse with her that we had never met before. Marnie is usually in there alone with us. Well, this nurse was trying a little too hard to be helpful. She would encourage Kayla to take deep breaths when Marnie was listening to her lungs. So, basically, Kayla would not take deep breaths. So, this nurse tried to encourage her more and that made Kayla not do it . . . more.  Marnie moved on to the part where Kayla is supposed to lie down on the examining table. I sat right next to her, but she did not want to lie down. She cried and kicked and screamed and she is a strong little girl. The "helpful" nurse was right in Kayla's face trying to get her to calm down and just lie there so Marnie could feel her stomach. You can imagine how much that helped. I was trying to help, but between the nurse and Marnie constantly trying to talk to her and get her to lie down, nothing was helping. I think Marnie got a little frustrated with her and left the room. She came back with Stephanie, the music therapist, who Kayla really likes. Unfortunately, she was way past calming down by then. I was pretty sure by then that the nurse was the issue here and I told Marnie that. Marnie was able to quickly examine her and then left the room so Kayla could calm down. She was much better when we were alone and I asked her if she didn't like the nurse and she said yes.

 I should have been more forceful and told both Marnie and the nurse to leave for a minute so I could talk to Kayla. There are some things that just don't work for her and forcing her into doing something she doesn't want to is one of them. Next time, if that nurse is there, I will definitely ask her to leave and I think we will be okay.

 When Kayla had calmed down, we went into the chemo suite and the sweet nurses in there were all worried about her and wondered what was wrong and were all ready to spoil her. Once we got Snow White on and I gave her a cookie I had brought, she was good to go for the rest of the day.

 We colored, practiced writing letters of the alphabet, played games, ate lunch, did some music with Stephanie, and basically had a good rest of the day.

That evening, I couldn't get Kayla to drink all of her OJ (with zofran in it). I should be glad that she prefers to drink water over anything else, but it is really hard to hide meds in water! She maybe drank half of her cup. So, at 3AM the next morning, she woke up and threw up. I got her some more OJ with zofran and just asked her to drink what she could. She drank some, but not much. She threw up off and on until noon on Friday. I finally got her to finish off her OJ and she was good for the rest of the day. I am not sure what I am going to do if I can't get her to drink something besides water so I can hide zofran in it. Ugh.

July 26th - Week 19

I am getting a little behind in my posts, so I had better get going. Our July 26th treatment was now over a week ago. It was a pretty normal visit. We got there, checked in, accessed, and met with a doctor. Kayla breezed through everything great. The doctor we met with was a very quiet one who just came in, examined her, asked a couple of questions and we were done. He's not my favorite to talk to, so even if I had questions, I probably wouldn't have asked him. But, she is doing great, so we went on into the chemo suite.

 We colored, watched Snow White, colored, ate lunch, colored, played games and colored. Kayla loves to color. :)

 Kayla did conquer one little milestone. She pushed her own IV pole around. Usually, I pull it and hold up her hose when we walk around, but that day, she decided that she wanted to try to pull it herself. She did a very good job and I am proud of her and her independence.

 There were also two cute old ladies dressed as clowns who came to visit. They have been there before. They came and did some magic tricks for Kayla and then put a Nemo sticker on her IV bag so that she could have a fish in her "fish tank." It is such a cute idea. I took a picture, but I'll have to add it later. My camera is downstairs and I am now 30+ weeks pregnant and don't feel like going and getting it right now. :)

 I was able to get Kayla to take some zofran in her OJ that evening when we were home. She did wake up the next morning and threw up before we got her some more. But, after that, she was good for the day.