May 24th - Treatment #10

Last Thursday (I am a few days late in posting this) went really well.  It was our first full treatment where Bryson was not able to come with us.  She did fabulous, though, and I wasn't too worried about it.  She has really gotten used to the sleepy cream and accessing her port.  She always smells a flavored chapstick and sucks on a Dum Dum sucker to help with the stinky smells and bad taste in her mouth.  

We met with Marnie, the nurse practioner, again.  We were supposed to meet with Dr. Hanson.  He is her doctor, but we haven't met with him since our first week there.  They have been trying to get us in to meet with him again, but he ended up sick on Thursday and couldn't come in.  Kayla is getting pretty comfortable with Marnie since we have been seeing her so much.  She and I now sit on the bed/table thing while she is getting examined.  She used to sit on my lap in a chair and get examined that way.  

Each week they check her blood counts.  Certain parts of her blood have to meet a criteria in order to do a chemo treatment that day.  For the past two weeks, her blood counts (specifically, neutrifils-they fight infection) have been pretty low.  In fact, last week, she was barely above the line to get treatment.  This time, she was barely below the line, so Marnie told me that she wouldn't be getting a treatment that day.  

I was kind of disappointed because every delay we have is one more week added on to the 60 weeks.  As we were talking, Marnie was looking at Kayla's treatment schedule and realized that we were still in the Induction period.  It was actually the very last week of it.  So, she went and checked out a 200 page document of rules and procedures for chemo and found that during the induction period, they patient still gets treatment even if they do not meet the criteria.  

So, we did end up doing a chemo treatment that day.  Kayla will have the next two weeks off from chemo and then she will begin the Maintenance phase where it is 8 weeks on 2 weeks off, I think.  I am glad that she will have two weeks to get her blood counts up and hopefully be ready to begin again.

During the off weeks, we will still have to go in, access her port, do labs to check her blood counts and meet with a doctor.  So, I guess it's not really a week "off."  

Kayla had a lot of fun with Miss Stephanie on Thursday.  She helped Stephanie play the guitar.  They did quite a few songs and had a lot of fun.

Kayla also made some cards with Miss Jenn.  The cards were for Lily, since it was her Kindergarten graduation that day.  They had lots of fun being silly and making cards.  Kayla is really starting to open up with some of the people there.  It is fun to watch. :)

Sorry, the pictures aren't very good.  The sun was shining brightly through the window.

For the rest of the time, Kayla and I colored, and colored, and colored, and colored.  She is nonstop energy.  I was tired.   :)

And that was it.  When it was all done (an hour or so of fluids, and hour or so of chemo, and a couple more hours of fluids, plus 2 doses of zofran)  she got de-accessed and we went home.

For the past few weeks, Kayla has woken up on Friday morning feeling nauseous and throwing up for a few hours.  She refuses to take the zofran at home, so she just gets through the throwing up until she's done.  This week, though, she felt a little nauseous, and even coughed a little, but never actually threw up.  She was fine for the rest of the day.  That was very nice. ;)

It's a . . .

It was my turn to go to the doctor today!  I had my ultrasound.  Bryson, Kayla and Benson all went with me.  The kids were really good during the ultrasound.  Benson kept asking about the lights being dim, I think he wanted them brighter.

Everything about the baby looks perfect and healthy.  The tech was able to see everything she needed to and we did want to find out the gender.  I like to be prepared beforehand and the kids would probably drive me crazy asking if it was a boy or a girl for the next 20 weeks!  So, the verdict is. . .

GIRL!

We are very excited (especially the girls. :)  I have been thinking for over a year now that our next one would be a girl, so I wasn't too surprised.  The name I have picked out (and I think I have the girls convinced) is Sadie.  We aren't for sure on a middle name yet, but it is really fun to know that we have another little girl who is going to join our family soon!

Pentamidine

Tuesday, I had to take Kayla into the clinic so she could get a dose of Pentamidine through her IV.  Pentamidine is the antibiotic that she gets to prevent pneumonia since she still refuses to take one orally.  Since the antibiotic and zofran don't mix well, they had us come in on a different day to get it.

Since it was Tuesday, Lily didn't have school.  So, she wanted to come with us (I don't really want to take Benson at the busy 2 year-old stage that he is at right now--so he went to another friend's).  Nathan and Lily have both really wanted to come and see what our trips are like, so I thought this would be a good trial run since it would be a short day.

Kayla did awesome with everything, sleepy cream, accessing her port, and afterwards the de-accessing.  Hardly a whimper about anything.  I did notice a shocked look on Lily's face when they stuck the needle in Kayla's port and when they took it out.  I think it was good for Lily to see a little of what Kayla goes through. . . especially when people are often giving Kayla gifts and she gets a prize out of the treasure tower each week.

Once we got into the chemo suite, there was another little girl in our usual spot.  So we sat at the little table and chairs and joined in on some music and games with this little girl and Miss Stephanie, the music therapist.  Lily had a great time playing the instruments and games.  Kayla was pretty shy for most of it - I am sure it was because there was another little girl there that she didn't know.

The Pentamidine took about an hour and then we were good to go.  Lily wanted to stay longer and play. :)  But, we packed up and headed home.  All in all, we were gone from home about 3 1/2 hours.

May 17th - Treatment #9

Today has been a really good day!  First, our appointment was an hour later than normal, so we weren't in quite as big of a rush this morning and I didn't wake up all night long with dreams of being late.  Also, Kayla asked me if it was time to put the sleepy cream on before I even mentioned it.

So, we got Nathan and Lily off on the bus and dropped Benson off at another friend's house and drove to Boise to the MSTI clinic.  

Kayla did awesome again while she got her port accessed.  No crying or whimpering at all.  She sucked on her dum dum sucker and sniffed some good smelling chapstick (the cleaning soap stinks and she gets a bad taste in her mouth when they put some of the initial fluids in her) while Bryson distracted her by looking for a penny in a little seek and find toy.  (If you find the penny, you get a prize--I didn't think he'd put it down until he found it, but he did (put it down that is, maybe he'll find the penny next time!)).

We met with Marnie, the nurse practitioner again today.  I told her about Kayla's appointment with Dr. Lee and she was very pleased with everything.  The dentist's office also had called me this past week and had scheduled a dental surgery to take care of some of Kayla's cavities.  Her dental surgery is scheduled for June 7th at 8AM (which means we will have to be at the hospital by 6AM which means we will have to leave our house by 5:15AM. . . can't wait. . .).

Bryson asked Marnie about Kayla's hair.  The child life person, Deborah, was in with us, too, and she said that what she has seen with patients getting the same chemo Kayla is getting is that their hair often thins, but doesn't fall out entirely.  This has given us a lot of hope!  So far, I haven't seen any thinning at all.  

After all that, we came in to our usual spot in the chemo suite.  Miss Stephanie, the music lady, was there and she and Kayla had a great time playing instruments and singing songs!  I think this is the most Kayla has opened up to anyone here yet.  I'm sure all of the nurses are a little jealous.  They are all trying to get her to smile at them or talk to her.  Kayla was laughing, being super silly, talking and having a lot of fun with Miss Stephanie.  

Here are a couple pictures of Kayla playing along with Miss Stephanie:

I didn't get pictures of the silly stuff, these were from the beginning when she was busy focusing. :)

We just got done eating lunch and now Kayla is lying on the bed watching Snow White.

So, things are looking really good right now.  Next Thursday is Lily's Kindergarten graduation, so Bryson will be going to that and it will be my first time bringing Kayla alone to the clinic.  Seeing how well she has done the past couple weeks, I think we will be totally fine.

Also, today was the day to get another IV dose of Pentamidine.  But, the doctor decided not to do it today, but scheduled us to come in on Tuesday next week just for that.  Pentamidine does not mix well with zofran.  So, looks like next week will be full of doctor visits--Tuesday at the clinic, Wednesday is my ultrasound and Thursday for Kayla's regular chemo.

And hopefully, she will be okay tomorrow.  For the past two weeks, she has woken up sick and has thrown up for a couple hours on Friday morning.  Even with 2 doses of zofran and last week she got an extra steroid to help with nausea, but she still got sick.  So, we'll see.

Another week down!

Trip to Dr. Lee

Monday morning I got a call from Kayla's ophthalmologist's office reminding me of Kayla's appointment the next morning at 10:30AM.   Either I totally spaced it or it was scheduled without me knowing about it because I was completely surprised by it.  Luckily, we were free and able to go.  I am just glad we got the reminder call!

So, today was her appointment.  I tried to feel her out a little about how she would do by asking her if she would answer the doctor's questions and do what Dr. Lee asked her to do.  She hesitated a little bit, but told me that she would.

I dropped Lily and Benson off at a friend's (my friends are really coming in handy ;) and headed to downtown Boise for the appointment.

Kayla did so well.  She was a little shy at first, but she did great, mostly pointing at pictures and saying the names to letters that she saw.  Phew!  So, they were able to get a good idea about her vision.  Her right eye is really good.  She has 20/30 vision in that eye.  When they put the patch on her right eye to test her left, she had a lot of trouble seeing even the biggest letters and pictures.  I could tell it was a little frustrating to her, she kept saying, "I can't see it.  I can't see it."

So, her vision in her left eye is pretty poor.  I can't remember the numbers, it might be something like 20/250, if I am getting those numbers in the right order.

Dr. Lee was then able to tell us that yes, her left eye was the one most affected by the tumor.  She dilated Kayla's eyes and was also able to see that her optic nerves are no longer inflamed.  That is definitely good!  The color of her optic nerves was a pale yellow.  They are normally a pink/orange/yellow color.  Having pale nerves is pretty normal for having a tumor also.

Pretty much all we can do right now is continue chemo treatments.  We scheduled another appointment for July 10th, so in two months.  I wrote it on my calendar.

May 10th - Treatment #8

Today started out with lots of crazy dreams for me!  On Wednesdays, I have trouble sleeping because I am subconsciously afraid of sleeping in, so I dream about it all night. :)  I had dreams that Nathan and Lily missed the bus (about three different dreams) and I had a dream that the clinic was kicking us out because we were late too many times.  Our school is 15 minutes away, so if they really did miss the bus, we would not have time to drop them off because they catch the bus at 7:10AM and we try to leave for the clinic by 7:30AM.  So, I usually lay awake from 5AM on and keep looking at the clock.

Anyway, we did not sleep in, and actually we weren't even very rushed so it was a nice morning.  Nathan and Lily did not miss the bus and we got Benson off to a friend's house without a problem.  And we were right on time to the clinic.

Kayla did awesome today.  She did not cry at all again when the nurse stuck the needle in her port.  She still had me hold her when she got weighed, but a major improvement was she let us get her height!  As long as the nurse stood out in the hall, she was okay with Bryson and me helping her.

We saw a different doctor today--one we hadn't seen before--and Kayla did fantastic.  She didn't complain or cry at all and she even lay down on the table when the doctor asked her to.  Hooray!

Now we are in the chemo suite chilling out.  We watched a little Tangled, played Sequence for Kids about 5 or 6 times, made a lady bug visor, ate lunch and now she is working on a Mother's Day project with Miss Jenn, the child life specialist, so I am trying to stay out of the way.  ;)

Last Friday, Kayla woke up throwing up at 4AM until 9AM and I couldn't get her to take any zofran.  She was fine for the rest of the day.  But, since she did get sick, the doctor decided to give her an additional steroid that will hopefully prevent any problems tomorrow.  We will also stay until she gets her second dose of zofran again.  So, we'll probably be done close to 3PM.

Here's a picture of Kayla playing the harp. :)  There is a music lady who always has fun instruments to play.  I had a lot of fun playing the harp, too.  

So, we're almost done with another treatment. :)

Adventures with Church

Since church is one of the high germ traffic places to be, we have been avoiding it all together with Kayla.  Bryson and I have been taking turns going to sacrament meeting and then he stays home with Kayla for the last two hours while I go to Primary (I am serving as Primary president right now of over 150 kids).  

We decided to take Kayla today--just to sacrament meeting.  We sat in the back and didn't have contact with anyone and I always have hand sanitizer and wipes with me, so I felt pretty good about the whole thing.  Bryson took her out during the closing song and headed home.  She was excited to go and I think that this will work out from now on, hopefully.  :) 

Happy Birthday to Benson

So, Thursday, after we got back from our treatment, we went ahead and celebrated Benson's birthday.  I was considering just waiting until the next day because I didn't have a cake made or anything.  But, my good friend who watched Benson that day made a brownie cake for him and sent him home with a present.  

He was so excited about his cake that he had to hold it in the car on the way home and kept calling it, "My birthday!"  He was so ready to eat it I thought we'd better go ahead and sing to him. :)

So, I got everyone ready around the table to sing and candles lit.  Benson was getting very anxious and started sticking his fingers in the frosting and eating it.  Bryson got out the video camera and got ready to record.  Then. . . Lily tripped over Bryson's foot and fell and cut her hand a little bit.  So, she started screaming.  While we were trying to get he taken care of, I am pretty sure that Benson tried to grab one of his candles and burned his finger.  So, he started to scream.  I was determined to get this done, so we got everyone calmed down enough to sing happy birthday to Benson and blow out the candles (which were now about 1/2 inch tall. . . if that).  Success.  Ha ha. 

The kids helped Benson open his presents.

Benson's new trike!  (I found a steal on Craigslist:)  He has fun riding it (actually, I push him), and sometimes he likes to get off and "me push!"

Anyway, Benson is a super sweet little boy.  He is starting to talk a lot and it is so much fun.  He loves knock knock jokes and high fives.  He is into cars, trains, buses, animals, and everything that a typical little boy likes.  He is very particular about what color of anything that he wants.  He is always excited to go play at a friend's house on Thursdays (thank goodness!) and puts on his little backpack of supplies for the day. He entertains us with his little personality and loves to give hugs and cuddle.  One of his favorite things to do is "spype with Mama" (skype with Grandma)  And he is so excited for the baby.  All he talks about are babies or going to a friend's house with a new baby.  We love you, Benson!

May 3rd - Treatment #7

Treatment #7 started out at 6:30AM, taking Kayla's bandaid off from the week before (over her port) and putting the sleepy cream and Glad cling wrap.  This was the first morning where she did not protest.  I was able to get it on without Bryson needing to to hold her down.  That is improvement!  

We got Nathan and Lily off to school, everything loaded up and dropped Benson off at a friend's house and went to the clinic.  They want us there by 8:15AM, but no matter how hard we try, we cannot get there before 8:30AM.  Maybe next week!  

When we arrived, the nurse came right out to get us and took us back to access her port.  There were two other nurses in the room blowing bubbles and talking to her and she did not even whimper this time when they stuck the needle in.  Hooray!  

I almost thought she would stand on the scale alone to get her weight, but she still wanted me to hold her.  

They hooked her up to IV fluids right away and gave her the first dose of zofran before we met with Marnie, the nurse practitioner.  She usually examines Kayla on my lap, but this time, we had her sit on the table, with me next to her.  She did a little kicking and screaming, but hopefully we will move towards her being able to sit on the table/bed thing in the near future without a problem.

Jenn, the Child Life person who always has fun projects for Kayla, was gone on Thursday, but she left a whole tub of fun projects.  We colored with markers on a big poster, colored a purse, made a picture frame, had a snack, ate lunch, and then afterwards went over to the bed and watched a movie.  

We actually got done by 2PM, which was early for us on our long days!  She was able to get her second dose of zofran and then they de-accessed her and we left.  We even got home before Nathan and Lily got off the bus (which they weren't happy about. . . they like going to a friend's house right after school. :)  

It was also nice to get home earlier because it was Benson's birthday!  Luckily, he doesn't know any better yet.  I'll post a little about his birthday next.  

Here's Kayla in the waiting room right after we arrived.  She insisted on wearing her fairy wings and wand that some friend's gave her.  Everyone called her the fairy princess. :)

Here she is working on her picture frame.  

One more week down!

A Day of Doctors - The Sequel

So, yesterday I took Kayla in to see a dentist that would be able to do her work at the hospital.  She will definitely need to be sedated.  I have noticed cavities in her teeth for awhile, but was waiting for her to get better. . . before all of this erupted.  So, now that she has a port and is doing chemo, dental work gets more complicated.

I talked to the dentist on Tuesday and he sounded pretty confident that he would be able to examine her teeth despite what I told him about how she will not even sit in a chair at the dentist and is not very cooperative in general with doctors. :)  So, we went in yesterday morning and after waiting for a very long time we got in to see the dentist.  He had her sit on my lap and I held her arms down - he examined her teeth for about three minutes while she screamed her ear piercing scream.

She has 7 cavities that will either need to be filled or crowned, but nothing is totally urgent that it needs to get done right away.  That was a relief to me because I can see a couple of her cavities and it looks worse to me than I guess it really is.  The best time to do the work with her treatment plan would have been in the last two weeks--before today.  Since we missed that window, the next best time will be in about a month or so when she is finished with the induction phase of her treatment.  After that we will have a short break and then start into the maintenance phase.  So, I now will just wait to hear from the dentist, or the MSTI clinic to tell me when she is scheduled to have her dental work done.  I have to admit it is very nice not to have to worry about scheduling all of these things.  The nurse takes care of it and then just calls and lets me know what will happen.

The second part of our day had to do with Benson.  He woke up with this awful rash all over his body.  Great. So, on the way to the dentist, I was calling the pediatrician to make Benson an appointment.  Kayla and I got back from the dentist around 11:30AM (it was in Boise) and Benson's appointment was at 1:30PM.  So, I picked up Lily and Benson from my friend's house and took them home, got everyone lunch and put Benson down for a quick nap before his appointment.

A wonderful young woman in our ward has volunteered to babysit for us whenever we need it for free for the entire year of Kayla's treatment.  She is home-schooled and that has been an incredible blessing because I have needed so many babysitters during the middle of the day who can come to my house.  She has come to my rescue multiple times already!!  Thank you Megan!!  So, she came over to stay with Lily and Kayla while I took Benson to the doctor.

Benson has been on amoxicillin for his ear infection (and maybe for the bronchiolitis) for the past week and a half (if you are curious about Day of Doctors part 1, click here).  So, his rash is apparently an allergic reaction from the antibiotics.  He is not contagious or anything (thank goodness) but his rash will take about 4-5 days to go away.

And now today is our clinic day, so my next post will cover that.  :)

Test Results

I got a call from someone at the hospital today, I think she said she was from the Genetics something or other. . . anyway, she had Kayla's test results for the Neurofibromatosis.  They sent blood work off when we were in the hospital and told us that it would be about six weeks to get results.

So, the test came back negative!  That is good for now.  But, we have been told a few different times that even if the test comes back negative, that doesn't necessarily mean that she doesn't have it.  She just may be too young.  As she gets older, she still may develop some of the other symptoms of the condition (brown spots on the skin, small tumors or bumps under her skin, freckles under her armpits, and more.

The main reason the doctors think she has this condition is because of the type of tumor that she has.  Optic gliomas are very commonly found in people with neurofibromatosis.  But so far, that is the only symptom that she has and they usually have to have at least two symptoms of the condition for it to be diagnosed.

Anyway, for now, we are good and just focusing on her chemo treatments and keeping her healthy despite the coughs and sicknesses that are going around the rest of our kiddos!  So far so good.

And also, another thing I like to keep updated is that she has not lost any of her hair yet.  Knock on wood!