September 27th - Week 28

Well, our day today started out a little later than normal.  Kayla's appointment wasn't until 10:15AM.  We are used to the 8:15AM appointments.  I like getting there earlier because then we get done earlier and the day doesn't seem quite as long.  But, oh well.  We dropped off Benson at another friend's house (thank you!) and drove over to Boise.  Kayla got checked in and accessed, and unfortunately, our usual spot was taken!  I was afraid that would happen with us starting so late.  The nurse, Penny, told me that she fought off 3 people to try to save our spot, but alas, it got taken when she wasn't looking.  

So, we had to find new spot: a little table and chairs in the other chemo room.  We usually spend a lot of time at the little table and chairs in the main room, but "our spot" is the back corner with a bed and TV, which comes in handy when I need to rest for a little bit or when Kayla wants to watch a movie.  It was going to be a long day. . . 

We met with Marnie, and Kayla did great - taking big breaths when she needed to and everything. :)  I asked Marnie about all the kids getting flu shots. . . we all have to get them this year.  I will take the other kids to their pediatrician, but I was wondering about Kayla.  Marnie mentioned that when Kayla gets her next MRI (which is scheduled for October 19th) she will try to orchestrate it so that Kayla can just get her flu shot while she is under anesthesia .  Sounds good to me!  That's one less thing to juggle. :)  

After all that, we went back to our little table and did flashcards, played bingo, colored, ate lunch. . . the usual stuff.  I did my best to stay comfortable on that hard little chair.  Kayla was a little tired at the beginning, but she perked up and actually had a really fun day.  Miss Jenn came in and gave her a fun project to work on - coloring a coffee filter with markers, then painting it with water and gluing it to an outline of an apple to hang on the window for a stained glass effect.  She worked on that for a little bit and Jenn sang apple songs with her (to her).  

It was a really nice day, so we went outside and blew bubbles and played catch with a ball.  For a little while we had Jenn, and nurse Heather outside playing jump rope with Kayla and being really silly.  I was sitting uncomfortably on a metal bench laughing and thinking I should grab my camera. . . sorry. 

Kayla finally opened up to Jenn as she began asking her all sorts of questions.  It was fun to hear Kayla's answers.  She drew with sidewalk chalk and then had a bubble blowing war with a new child life lady, Chelsea.  I was surprised that Kayla opened up to her, too.  In fact, Kayla didn't even want me outside.  So, I had a few minutes to go inside, find a little bit more comfortable chair and relax  for a few minutes before it was time to go.  

I did get a few silly pictures of Kayla right at the end:

We left and got home at about 5PM.  After eating a quick dinner, Bryson took Nathan and Lily to Nathan's scout pack meeting and I got tired Benson and Kayla to bed.  

UNFORTUNATELY, I could not get Kayla to take her zofran!  Ugh!  I am just waiting for her to wake up throwing up.  Hopefully, it will happen before I go to bed and not in the middle of the night.  She told me she would take it when she threw up.  Normally, she needs it when we get home, and also in the middle of the night or in the morning if she makes it that long.  We'll see how tonight goes.  Benson was being difficult to get to bed, so by the time I went to check on Kayla, she had fallen asleep without taking it.  

The good thing is that we made it through her 4 weeks of chemo and now she has 2 "off" weeks, where she just goes in to get her blood counts checked.  So, I am free to have the baby any time!  I am hoping for sooner rather than later. . . I did go to the doctor yesterday and am dilated to a 4 now.  I feel like a ticking time bomb. . . 

September 20th - Week 27

Well, we had quite an exciting day last Thursday!  It started out in the normal way, getting Nathan and Lily off on the bus to school, hopping in the car and heading to the clinic (leaving Benson sleeping-Bryson took him to another friend's once he was up).

Kayla got checked in, port accessed and we met with Dr. Meeker . . . all with no problems.  I did ask Dr. Meeker for a larger prescription for the pill form of zofran.  Since Kayla took it so well last week and we talked about taking it again, I think that will be a successful route to go.  Hooray!  Anyway, I only had a small sample prescription of the pills, so the nurse called in a regular prescription for us.  

We had fun in the chemo suite.  Kayla got some fun projects to do.  She made a sand art giraffe.

And she painted with watercolors. . . 

We also watched Tangled, wrote Thank You cards, ate lunch, meanwhile. . . working out some logistics. . . 

All of nurses and staff at the clinic were wearing their blue and orange BSU Broco attire.  It was the big BSU vs. BYU game that night.  So, I was talking to Jenn, the child life specialist.   I told Jenn that Bryson and I had both gone to BYU.  We weren't going to the game and we didn't get the TV station to even watch it. She left and then came back a little bit later telling me that the clinic had 5 extra tickets to the game that night because a family had cancelled on them.  (For every home game, they take a certain number of patients and their families to the BSU games.  They usually ask the older kids about it, so they never had talked to Kayla.)  

So, my first thought was, "Do we have to bring the kids?"  Ha ha!  The game didn't start until 7PM and it was a school night.  I knew Kayla would totally not be up to it and their was no way I would bring Benson.  I knew Nathan would LOVE to go because he had been bugging me for a week about watching the game or signing up with a TV service so we could get the game, etc.  Lily, I wasn't sure about.  I could see her going either way, staying home with a fun babysitter, or going to the game.  

I told Jenn we could for sure use 3 tickets, but wasn't sure about Lily.  She said that we might as well take one for Lily in case she wanted to go.  With one extra ticket, I asked her if we could invite a friend.  Nathan's best friend, Nathan, is a complete football fanatic and is obsessed with the Broncos (even though his parents are BYU alumni. . . :).  Jenn told me yes, we could have all 5 tickets.  She then got all of the kids t-shirt sizes and brought me some Bronco t-shirts for each of them.  She also told me that we would meet at the clinic at 6PM and they would shuttle us over to the game (so we don't have to worry about parking - nice!), we would get food vouchers for concessions at the game.  It sounded great to me!  

So, when Kayla was done, we went home.  She did really well and I got her to take a half of a zofran pill (yay!).  It did take some time and convincing, but I am so glad that she took it.  I picked up our wonderful baby-sittier at 5PM and we were off to the game!

So, here are the two Nathan's. . . just a little excited for the game.

And adding Lily in there, too.  They are wearing their little Bronco Bunch t-shirts that I got at the clinic.  Sigh.  Lily was rooting for BSU, too, because her teacher at school is a huge fan.  

When we got to the clinic, we loaded onto a shuttle bus that was all decked out in blue and orange, along with everyone else on the bus.  Bryson and I were the only ones in our BYU t-shirts.  Everyone was still very nice to us. ;) 

We got to the stadium and were met by a guy who led us in through a private entrance.  We were told that we could use the players bathrooms (and the guy in charge of our group would take the kids when they needed to go).  

We had our own little set of bleachers to sit on right down in front of one of the end zones.  They were very good seats. 

And, Bryson caught a t-shirt!  

You can see how close we were. . . 

Nathan and Nathan, enjoying the game.  (Our Nathan does not like posing for pictures, if you haven't figured that out by now).

Me and Bryson.  I have to say I handled the game very well at over 8 months pregnant.  I brought a pillow to sit on, but was standing for much of the game.

It was difficult keeping these boys in their seats.

Lily was done by halftime.  This is where she spent the second half of the game. :)

They also gave us food vouchers to go and get some concessions.  Talk about full service!  Too bad BYU didn't win the game!!!!!!!

Afterwards, we got to do down onto the field and the kids got autographs from a few of the BSU players and ran around on the field.

We then rode the shuttle back the clinic and drove home.

It was a fun once in a lifetime night (especially since we got home around midnight on a school night!).  The kids did great getting up and off to school without too much complaining (I think they were too tired to complain!).  

Kayla woke up around 4:30AM.  She sat straight up and said, "I NEED ANOTHER PILL!" and then ran to the bathroom to throw up.  I went downstairs and got her another half of zofran pill.  It took a half an hour to convince her to take it. . . sigh.  But, she did and I got a little more sleep before it was time to get the kids up for school.  I was pretty much dead on the couch all morning unable to move.  Luckily, Kayla and Benson had a fun time riding bikes in the backyard together, giving me a little chance to rest.  :)  

September 19th - Dr. Lee

Today Kayla had an appointment with Dr. Lee, her ophthalmologist.  She has follow-up appointments every 2 months right now.

At first, Kayla was very shy for the guy nurse.  He must get that a lot, so he went and got a woman nurse. :)  Kayla did a lot better for her.  Normally, Kayla looks at the letters on a screen and then points to what letter it is on a little card that she is holding, but today, she actually said the letter!  Wow.  That was great.  She did everything she was asked to (well, I did mention to her that we could get some ice cream afterwards if she cooperated).

Dr. Lee then came in and examined her eyes.  She decided not to dilate her eyes today, but wait until her next appointment in two months.  Kayla's right eye has remained very stable at 20/30.  That is great and Dr. Lee was very pleased with that.  Her left eye is the same, too.  Dr. Lee was 2 to 3 feet away from Kayla and waved her hand.  She told Kayla to wave her hand whenever she saw her hand waving.  Kayla did great and saw all of the hand waving, but that is about the extent of the vision in her left eye.

I am unable to notice that Kayla can only see out of one eye.  She does great compensating for it.  She knows and writes her letters very well and has no problem coloring, or looking at books.  I am super grateful for that!

Physical Therapy

I just realized that I totally forgot to add this into my last post about last week's visit.

While we were at the clinic for Kayla's treatment, Dr. Hansen's nurse came in and asked me if the physical therapist had come yet.  I told her no.  She told me that if the therapist didn't come today, she would come next week.  Yay!  I was thrilled about that.  It meant no extra appointment for us to make and go to!

The physical therapist did come in that day.  She was very nice and Kayla was (surprisingly) very cooperative and did everything that she was asked to do.  I'm not sure what her name was, so I'll just call her the therapist.  The therapist did an evaluation on Kayla and told me that she is a very strong girl (. . . yeah, I know that. :)  They rate strength on a scale from 0-5.  Kayla was 5 everywhere except her ankles.  They were just a little bit weaker.  So, she gave us 5 simple exercises to do each day to help Kayla to strengthen her ankles.  They are very simple and should be easy to do.

So, each day, usually when all the kids are home, we all do the exercises together and they think it is fun.  Even Benson gets in on it. :)  I don't know if the therapist will be coming back to check on Kayla every once in a while or what, but I was soooooooooo grateful that she came to us while we were at the clinic.  I am not going to worry about getting Kayla in to do physical therapy now. :)

September 13th - Week 26

We had another early morning today of getting Nathan and Lily onto the bus and then getting in the car to go to the clinic to be there by 8:15AM.  We got there, Kayla got accessed and checked in with no problem and  then we met with Marnie.  I told her about our experience last Friday when it took Kayla all day to drink her juice with zofran.  Marnie mentioned (like she has before) about the possibility of using a zofran patch.  Unfortunately, Kayla is too little for it, but Marnie said that she would talk to the pharmacist about possibly adjusting the dose by folding the patch over and taping it down.  Anyway, we'll see.  That would be very nice. . .

Kayla and I were in for a LONG day.  We had an hour of fluids, over an hour of chemo, two hours of post fluids and then an hour of pentamadine.  Luckily we secured our favorite spot in the chemo suite since we were there so early.  We colored, played games, watched part of Toy Story 3, did some preschool activities, and ate lunch.  It was a super nice day, so we did a little bit outside on the patio area-some of the preschool stuff and we ate lunch outside.

When Miss Stephanie came to ask Kayla if she wanted to have some music time, Kayla said no.  I think it was because Stephanie had another girl with her, kind of shadowing her.  I am pretty sure that is why Kayla said no.  After lunch, though, and watching a couple of other kids do music, she changed her mind.  In fact, Stephanie was busy with another child, but her helper, Irene, said she could come and do music with Kayla and Kayla said okay.  Wow.

So, Kayla and Irene played songs on the guitar and xylophone.  Kayla didn't even want me outside with them, so I walked around the hallway a little bit tried to be comfortable.

After they were done with music, Kayla wanted to do craft, so we tracked down Miss Jenn and got some paper dolls to color and cut out.  A little bit later, Jenn came back and Kayla went outside with her to draw with sidewalk chalk and blow bubbles.  We were close to the end and I was getting kind of tired, so I took that opportunity to lie down on the bed and rest for a few minutes before the drive home.

And we were done with another week.

Now, it took all night to get Kayla to drink half of her tiny cup of grape juice that I put zofran in.  She was so tired that she finally just fell asleep.  I knew she was not going to make it until morning before she started throwing up.  And I was right.  At 2:30AM, Kayla came in our bedroom needing to throw up.  Now, for as much as she throws up, I have to say that she ALWAYS makes it to the toilet.  I am very blessed that way. :)

Well, I wasn't quite sure what to give Kayla.  I asked her if she wanted grape juice. . . but then I didn't really want to sit with her all night trying to get her to drink it.  So, I told her that I had a little pill, kind of like a smartie that would help her to feel better and not throw up.  She perked up at the mention of the word "Smartie."  She said, "I like smarties!"  I told her that I wasn't sure what it tasted like, but I thought it was a little minty.  She said, "I like mint!"  Okay, great!  So, I went downstairs and got one of the zofran pills, cut it in half and brought it up to her.  She had some water, so I told her to put the pill in her mouth and then drink some water and it would disappear.  Well, she did it!  But then she said it was gross and took it out of her mouth.  It was ALMOST gone.  I then talked her into doing that one more time.  AND SHE DID!  She put it back in her mouth and took a drink of water and told me that it was gone!  YAY!!  I was so excited.  Now we could both sleep for the rest of the night. :)  She did great.  The next morning, I told her that she might start to feel sick again and that she might need to take the little pill again.  And she said. . . OKAY!  (Not excited like that, but more like . . . okay. . . if I have to. . .)  I was just excited that she was willing to do it again.  This may be a HUGE breakthrough. . . if she keeps it up.  Kayla was actually fine fore the whole day and never needed anything else.

And just to keep you updated.  I had gone to my doctor the day before.  I was just over 36 weeks, dialated to almost a 3 and 80 percent effaced.  That was more than I was expecting.  If we can make it through these next two weeks of chemo, then I'll be ready for the baby to come so I can have her two off weeks to recover before we start back into Kayla's next round of chemo.

September 6th - Week 25

We are starting our next cycle of chemo:  4 weeks on 2 weeks off.  I think I mentioned after her last visit, I sure hope Kayla can stay on track this month, because I will most likely have the baby sometime during her 2 off weeks, which would be great timing! 

Kayla (and pretty much all of us) has been fighting  a cold, but luckily, it has not really gotten bad and she is getting over it.  I was a little worried that it might affect her treatment, but we met with Marnie and she told us that they will sometimes hold off treatment for illness, but not usually for colds.  Kayla has had a little bit of a sore throat and has been coughing a little and sneezing a little.  Nothing too bad, but every time she coughs or sneezes or complains of a sore throat it starts to stress me out!  The biggest concern for her is if she has a fever, which she hasn't.  Knock on wood. 

So, Thursday's treatment was a pretty normal day.  We left at 7:30AM, right after Nathan and Lily got on the bus for school, Kayla and I headed out.  Benson was still sleeping, so Bryson took him to another great friend's house to play for the day after he woke up and had breakfast.  That is very helpful to me on days when we have to be there early.  

Kayla did great with getting accessed and doing all of the check in stuff.  Although, I still can't get her to stand on the scale alone.  I have to get weighed holding her, and then get weighed alone so we can figure out her weight.  When we can get past that, it will be a huge milestone.  I was hoping we could be past it by now though, because it's getting harder to pick her up with my 8 month pregnant self.  

As I mentioned earlier, we met with Marnie, the nurse practioner.  I told her how I had met with Dr. Hanson and talked to him about physical therapy and that he was going to check into it.  Marnie did say, but could not guarantee anything, that a possibility would be to have a physical therapist from St. Luke's come over and do therapy with her while we are there at the clinic for treatment.  Now, that is something I could handle!    Get two things done at once.  That would be an ideal situation, but I don't know how likely it is to happen. 

We had a good day in the chemo suite. . . Kayla and I played the fishing game and then Rummikub until Miss Stephanie walked in and then Kayla was totally done with our game and ready for music time.   

The clowns came to visit and put another Nemo sticker on her IV bag, but I didn't take a picture of that this time.  They also gave her a pretty bracelet and a beanie baby.

It was such a nice cool day that we went outside to eat lunch on the patio area.

So, we played games, had music time, ate lunch, did some preschool stuff, took some walks around the hallways and then did a little craft project for Miss Jenn.  She had the kids write their names on a piece of paper and then glue little torn scraps of paper to their name.  We worked on this right at the end of the day and Kayla was getting pretty tired by then, so I helped her finish and she wouldn't look up and smile for a picture.

Another special thing she got was this beautiful quilt.  I guess September is Childhood Cancer Awareness month and each September the Craft Warehouse donates quilts to all of the kids here at MSTI (Mountain States Tumor Institute).  They were hanging on the walls all around the hallway, so we walked around and Kayla picked one she liked to take home.  She loves it.

She especially loves the back of the quilt. :)

And that was pretty much our day.  We were home by about 2:30PM which wasn't bad at all.  I am usually pretty tired by the time we get home, even though Thursdays are a break for me compared to every other day. :)

I was very thrilled that Kayla drank her "chocolate milk" (with zofran in it) in less than a 1/2 hour that night.  Yay!  I was less than thrilled when she woke up at 6AM throwing up and I got her a small, very small, cup of "grape juice" and she wouldn't drink any of it.  I was trying to get her to drink something with zofran in it all day long.  She just would not do it.  She even told me that she would rather lie on the couch feeling sick than drink grape juice and feel good.  What?  Crazy girl.  She was throwing up off and on all day and lying on the couch sleeping on and off.  The later in the day it got, the more she started throwing up, which then started to wear on me because I did not want her getting dehydrated and have to take her in to the hospital.  FINALLY, at about 7PM, Bryson was able to get her to drink it.  And she's been fine ever since.  Stubborn girl . ;)