Dé·jà vu

It seems like I just posted a post like this. . . . . . . . it's a  . . . . . . . . . . . .

GIRL!!!!

We are super excited to welcome another girl into our growing family!  I still can't believe it. :)  When I was at the doctor a couple months ago, he said it's like I was 52 weeks pregnant. . . now it's more like 61 weeks.  Yes, it is starting to feel that way.  I am really going to appreciate not being pregnant any more after this one. :)  

Hearing Follow Up - June 27th

On Thursday, Kayla had another appointment with the audiologist to monitor her hearing.  About 5 minutes before we were going to leave, Bryson offered to take her, so I actually didn't go to the appointment.  I told Bryson that he'd better do the blog post then. :)

Well, what he told me about the appointment was that the doctor that Kayla has been seeing is leaving to work somewhere else.  Bummer!  I really like her.  Oh, well.  The other report was that there was one pitch that Kayla showed a significant decrease in hearing.  It is one of the very high pitches, and it is on the very edge of being considered "significant" so it should not really effect Kayla's everyday hearing needs.  Still, we will go back in another two months for a follow up and from then on we will go in every 6 months for awhile and maybe every year after that, I'm not totally sure.  Some damage to hearing caused by chemo can be delayed , so that is why Kayla will still need to do follow up visits after she is done with chemo.

June 25th - Week 56

The light is getting brighter at the end of the tunnel!  Kayla made counts today and got chemo!  That means two more weeks left of chemo!  Yay!  I was a little worried because last week we went in on Wednesday, and I thought her appointment was for Wednesday this week, until I got the reminder call on Monday for her appointment on Tuesday.  Oops!  So, since it hadn't been a full week since her last chemo, that is one day short for he blood counts to recover.  

Kayla's appointment was earlier today than it has been in awhile, so we needed to leave by 7:45AM (of course it was 8AM before we actually left).  Benson was still sleeping, so I left him and Nathan home for Bryson to get to friends' houses closer to 9AM.  

We got to the clinic, checked in, accessed and met with Marnie.  Kayla's exam was great.  Marnie even commented that Kayla is always so boring to examine--which is WONDERFUL.  She is staying strong til the end.  We see other children at the clinic who are bald, skinny, and sickly looking.  It is so sad, but it makes me feel so grateful and blessed for how amazing Kayla has done.  After going through chemo for the past 15 months, you can't tell by looking at her.  Her face is paler than normal, but that is it.  

When we finally got Kayla's counts back, platelets were 90 (which once she has started a cycle they just need to be above 50) and neutrophils were just over 1000 (which need to stay above 500).  So, we were good to go for the day.  Hooray!  

The girls had some fun today in the chemo suite.  They played music with Miss Irene. . . even Sadie joined in. :)

The girls watched a couple movies . . .

Sadie took a nap. . . for part of the time.  She is a turning into a very squirmy baby now that she scoot/crawls around everywhere.  It's kind of hard to keep her busy while we are here all day.

And we played some Candyland, Sequence, Jr., and I Spy.  I thought we would get home earlier since we got started earlier, but it was still 4pm before we got home.  I was pretty worn out and am so glad to have wonderful friends and visiting teachers who STILL bring us dinner each week when we go in.  

June 19th - Week 55!

Today was another clinic day!  Nathan and Benson went to a friend's house and Lily wanted to come with us again.  :)  It was pouring rain on our drive over until we got into Boise.  And it seems like the past few (or maybe several) weeks I have not been able to get out the door in time to be on time to Kayla's appointment. It's not really a big deal, but I like to be on time or early when we go.  I guess there's always next week. ;)  

We got to the clinic and carried our boatload of stuff in.  Every week I have a giant bag full of food, baby stuff, and things to do for the day, Kayla has a bag of stuff to do, I carry Sadie and her carseat separately (she's just too heavy to carry in it! She's actually outgrown her infant seat, but I bring it just so she will take naps while we are there), today the girls each wanted to bring a blanket and we had a small bag of toys for Sadie.  So, we made it in and Kayla was her usually awesome self at getting checked in and accessed.  Of course, today, the nurse didn't start her fluids when she accessed Kayla because it seems to curse her counts.  But, when she doesn't get her fluids started then, it is usually at least an hour later when they get started, which makes for an even longer day.  

Well, we met with Marnie and the first thing she said when she walked into the room was "103, 300!"  Yay! Kayla's platelets need to be 100 (or 100,000, but they just say 100 for short) for chemo and they were 103, so she barely made it!  Yay!  We are on our way to being done!  Kayla's exam went great and we were off to the chemo suite.  We tried out a new room, the "crib room."  We've never used the crib bed before, but, with Sadie around, I'm thinking this might be a new favorite spot (See pictures below).

We were pleasantly surprised to see Miss Stephanie, the music therapist, today!  She had a baby a few months ago and we haven't seen her back yet, so the girls had a great time playing instruments and singing silly songs with her.  

They all chilled out on the bed for awhile watching a movie.

Just can't get enough of this cutie.

So, the bed is a crib and it was a nice place for Sadie to hang out, although the side was low enough that she was pulling herself up on it. . . which is a new thing for her now. . . 

Besides eating lunch and watching movies, the girls had fun playing games like Sequence Jr. and Headbanz.  Kayla also did some practicing reading and coloring pictures. 

It was a pretty long day. . . we didn't get away until almost 4PM.  It takes us about a half hour just to get out to the car.  First of all, because of all the stuff we are hauling, and second, because we just have to stop and chat with everyone on our way out.  We sure love everyone there.

3 more weeks of chemo to go!!

Make A Wish

So, just to keep updated about everything, last week I got a call from a lady at the Make a Wish Foundation!  She wanted to let me know that Kayla will receive a wish, told me a little bit about the program  (general types of wishes) and asked some questions about Kayla - her condition, where she was in treatment, what she likes, etc.  She was very nice.  She got my email address so she could send me a form to fill out to have a biography about Kayla.  She also asked if Kayla had any brothers and sisters. . . um, yes. :)  I told her that we'd been hoping to take a trip to Disneyland and asked her what the timeline was on the wish being granted.  She told me that they like to have 3-6 months to plan out the wish, so September would be the earliest.  If it could have been August, I would have wanted to push it, but since it is September, I think we will have to wait until Spring Break to take the trip.  Anything getting into September is going to get close to when I have the baby and I don't really want to be super pregnant taking 5 little kids on a big vacation. . . and anything before Spring Break will be just too soon after having a new baby.  So, in a way, I am relieved because now I know that I won't be pregnant for the trip (I like the rides, too!).  But, we were looking forward to doing something really fun to celebrate the finishing up of this super-long-more-than-a-year ordeal.

The lady told me that she already has two donors, both of whom have had children participate in the Make a Wish program in the past and that they would be contacting me in the next couple weeks.  Anyway, I am trying to get that bio done and emailed back with a picture of Kayla.

So, last night, I got a call from one of the donors!  She was very nice and asking me more about Kayla-what kinds of things she likes, favorite color, favorite candy or snack, what she would like her wish to be etc.  She also asked me more about Kayla's condition and how well she functioned with it and where she was in treatment.  She is going to talk to the other donor and they are both going to come to our house to meet us, fill out some paperwork, and get to know Kayla.  I told her that Kayla would like to go to Disneyland (not totally being brainwashed by us, she is really sticking with that and gets very possessive when Nathan and Lily come up with other ideas.  She makes sure they know that it is HER wish and SHE gets to decide).  The  donor told me that Kayla should come up with two back-up wishes in case they can't make it happen.  Hmmm...we are open to ideas about that.  So now I get to do things like make copies of the kids birth certificates and Bryson and my drivers licenses to have ready for when we meet.

Wow!  We are so excited and feel so blessed to be able to take part in this program!  We have some exciting times coming our way!

June 11th - Week 55 . . . Again

We were scheduled to go to the clinic on Wednesday last week.  Later I found out that my parents and sister were going to stop at our house on their way to Utah on Wednesday.  I was very disappointed!  Well, on Monday afternoon, the clinic called and asked if Kayla could come in on Tuesday instead and I was totally happy to do that!

So, we went on Tuesday morning.  It took a little bit of juggling to find friends houses for Benson, Lily and Nathan to go to, but it worked out.  We got to the clinic, checked in, Kayla got accessed and met with Marnie.  Everything looked great . . . except for her platelets.  They dropped to 60-something!  Another delay!  Bummer.  She has 4 more treatments and it would be nice to get them done soon!

Since we were there, they went ahead and gave her Pentamadine.  It was a week early, but if she gets her treatment this next week, then we won't have any more conflicts with Pentamadine and Aloxy (the anti-nausea med).  That would be nice.

And, on a more exciting note, the construction on the new chemo suite was finished and open!  We got to have our own little room area with a recliner chair for Kayla (she chose not to have the bed this time) and LOTS of floor space around that I could spread out a big blanket for Sadie to scoot around and play on.  It was very nice.

Kayla didn't want to be in the picture.  Anyway, it was nice not to be cramped into a tiny space.  And that was our visit!  We'll try again next week!

June 4th - Week 55: Take One

So, on Monday at about 5PM, I realized that I hadn't gotten my usual reminder call from the clinic.  I started thinking about our appointment for Tuesday and also realized that the time had been scheduled several weeks ago as a tentative time.  Hmmm.  Tuesday morning, I called the clinic right when they opened at 8AM and asked about Kayla's appointment that day.  Well, she was not on the schedule, so I was told that it would get worked out and a nurse would call me back.  I had places lined up for Nathan and Benson to go, Lily wanted to come with us.  We got all ready to go and waited for the call.  Originally, we were supposed to be there at 9:30AM, but when the nurse called me back, she said that they were going to get Kayla in at 10:30AM.  So, we hung out a little longer and then took off.

Everything went well with getting checked in and accessed.  Lily had fun being out in the lobby and playing with Miss Jenn.  A few nurses commented to me about how glad they are when parents are on top of things.  Kayla just kind of slipped by this week.  I am just so in the habit of going in on Tuesday that I wouldn't know what else to do. ;)  

We got to meet with Dr. Hansen, which is always so nice.  BUT, Kayla just BARELY missed her counts to be able to start the LAST cycle of chemo.  Bummer.  Her platelets were 95 and they need to be 100.  Ugh. SO CLOSE.  I did get to talk to Dr. Hansen and nurse Heather for awhile though and ask them some questions.  He clarified for me that once Kayla is done, she will get the IV Pentamadine for 3 months after (not 6 like I thought we were doing).  Once it has been 3 months after, then she will have her port taken out. This was a relief to me to know that we wouldn't have to 3 more doses of Pentamadine with no port.  That would mean an IV in her arm and because the Pentamadine is so thick, it would have to be diluted and probably take about 4 hours to get instead of 1.

I also mentioned to Dr. Hansen that we are possibly planning a trip to "the happiest place on earth" (we haven't told the kids yet) and wondered if he thought it would be okay to do so soon after Kayla would (hopefully) be done.  He was totally okay with it.  He said that people had gone during chemo, but he wasn't as comfortable with that.  Heather also told me that we would qualify for the Make A Wish program.  She said she would have another lady call me and get me an application.  Wow.  That would be Awesome.

And then we were off to home.  On the way, I asked the girls if they could go anywhere in the world, where would they pick.  Lily was quick to say Hawaii and practically planned out the whole trip right then. :)  Kayla said, "Walla Walla, Washington."  Sweet girl.  That is where grandpa and grandma live.  We are still keeping the whole thing a secret from the kiddos right now, so if you know them, please don't say anything.

And, we'll try again next week!