October 24th - Doctor Visit

So, on Thursday, we went back to Boise for our 4th time in just over a week. :)  Kayla had an appointment with Dr. Hansen.  And that was it!  No port access, since she is port-less now, and nothing else.  Nice!  We went in and she got her usual blood pressure and temperature checked, and then height and weight checked.  And just for the record. . . she will still not stand on the scale alone.  So, I (at 38weeks) am holding all 47 pounds of her to get weighed and then getting weighed myself. . . still.  Silly girl.  She also has her own little array of pen marks on the wall because she won't get measured with the handy height measure thing.  She has grown a lot in the past year and a half.  I think when we started all this she was about 102 cm and now she was over 110 cm.

Since we wouldn't be back for awhile and Kayla's birthday was the next week, we made some chocolate cupcakes to give to everyone.  We had fun passing them out and chatting a little with the nurses while we waited to see Dr. Hansen.  Miss Kim even brought Kayla in a birthday present.  

We had a nice visit with Dr. Hansen.  Kayla's checkup was great and her counts were great (I should have asked him what they were, but I was just too tired).  He said that we don't need to come in again until after her next MRI in three months.  Whoa!  That's like forever!  He also said that they won't need to take any blood draws (which would be through her arm now).  Nice!  He said that the blood won't tell us anything now, just the MRI's, so that is what he will be keeping an eye on.  And that in another three months she should be pretty much back to a normal immune system.  Yay!

After our visit, we finished passing out cupcakes and saying good-bye for 3 months to everyone and headed home.  Oh, one last thing.  I called the surgeon's office to schedule Kayla's follow up visit for her port removal surgery.  The lady I talked to told me that they never do follow up visits for those and that we didn't need to come in.  Hip hip hooray!  Now all I have to go to are my doctor visits and wait for this baby to arrive!  

October 22nd - Port Removal Surgery

Well, the big day finally came!  Kayla and I had to be at the hospital by 6AM (ugh).  I had talked to a nurse from the hospital yesterday and asked her about Kayla being able to have her port accessed to go to sleep.  She said that they didn't usually do that and that I'd have to talk to the anesthesiologist about it.  Hmmm.  I was hoping to not have to go to a gas mask this soon.  So, I called the clinic and talked to one of the nurses about it and she told me that she would call the hospital pre-op and put a bug in their ear about Kayla preferring to be accessed when she goes to sleep.  I love the nurses at the clinic. :)

Before I continue on with our day, I have to say that I was also waiting yesterday to hear the results of Kayla's MRI on Friday.   At about 4PM I got a call from Dr. Hansen.  He told me that the MRI looked great again (for the 3rd time) with nothing there.  YAY!  So, the surgery was on for sure now.

Okay, back to today.  I had a hard time sleeping because I was paranoid about sleeping through the alarm (going off at 4:50AM).  So, I kept waking up to check the clock and didn't sleep much after 4AM.  We got to the hospital at 6AM, got registered and went right down to pre-op.  The nurse told me that she had a note from MSTI about Kayla wanting her port accessed and that she had everything needed to do that.  YAY!  So, Kayla got accessed and checked out and was all ready to go by 7AM.  Her surgery was scheduled for 8AM.  It would have been nice to start a little earlier. . . but it ended up being 8:30AM before they wheeled her back.  We were both anxious to get it over with.  Kayla kept asking me when they were going to start.  We just waited and watched cartoons until they came to wheel her out.  I am totally fine with MRI's now and anesthesia, but this was a little different and I felt a little emotional about it all.  Maybe because this was an end to a big part of the past year and a half, or maybe it was bringing back feelings from when she first had it put in and all of the craziness at that time, or maybe it was because I am about to have a baby and I was tired and hungry. ;)

After Kayla went back, I went into the surgery waiting room and read my book.  The surgery lasted about 45 minutes, which went by pretty quickly.  The surgeon came and talked to me after it was done briefly.  He told me that everything went very smoothly.  He showed me a picture of where the incision was and what he did.  He also talked about pain control, if she needed it.  And that he wanted to see her for a follow-up in a week or two.  (Sigh. . . really?  I'll have a baby in a week or two.  Something else to hopefully squeeze in before baby).

A few minutes after talking to him, I was able to go back into the recovery room (before she woke up).  I got emotional again watching her sleep.  I did the same thing on Friday for her MRI and had no problem.  I don't know what my deal was today.  Kayla woke up fairly quickly, but it was a little rougher than waking up from an MRI.  Her port site hurt a little bit and she had an IV needle in her wrist.  She did want a popcicle right away, though, and was ready for some breakfast.

The nurse got all of the discharge papers ready and we got checked out by the anesthesiologist.  Then the nurse took off all of the sticky monitors and took her IV out of her wrist.  Kayla was a total trooper.  I helped her get dressed and we were ready to go.  She was still pretty sleepy, though.  She rode out to the car in a wagon and I helped her into the car.  By the time we got home, she was mostly back to normal and after a little rest on the couch she was up and running for the rest of the day. :)

She has school tomorrow, so I told her teacher that she was having this surgery today and that she might be a little extra tired and to just be aware.  She told me that she would keep a good eye on Kayla.  She has a great teacher.

Well, I have some pictures that I took, but I am having trouble getting them from my phone to my blog.  I'll work on that and have some soon, hopefully.  Oh, and we got to keep the port!  Crazy, but I thought, hey, why not?  I'll post a picture of it.

And life is moving on. . . and I am going to bed early. . .

October 18th - MRI

Well, we are in the thick of big appointments right now.  I have weekly appointments with my doctor (I am over 37 weeks pregnant now) and all of this with Kayla to get through.  On Friday, she had her MRI.  I left Benson and Sadie with a great friend (it was my first time leaving Sadie at a friend's house!) and took Kayla to the hospital.  Everything went very smooth.  I made sure Kayla knew what we were doing and she was like, "Yeah, yeah, I know."  I reminded her before going to bed the night before that she couldn't eat breakfast or drink anything when she woke up and she was like, "Yeah, yeah, I know."  In fact, when she woke up that morning, she came straight into my room and said, "Mommy!  Don't forget my MRI!"  What a great girl. :)

We left at about 9AM and checked into the hospital at 9:45AM.  We went right back into the MRI waiting room and went through the usual drill.  The nurse came and got us and took us to another room.  Kayla got into a hospital gown, I answered questions, we met with the anesthesiologist, and just spent time waiting.  Her nurse at MSTI packed a little bag with everything the hospital would need to access Kayla's port so they wouldn't have to go on a wild goose chase hunting down the right needle.  It worked well last time, so I am glad we brought our own stuff.  One big change for Kayla once her port is removed will be her MRI's.  She will have to use the gas mask to go to sleep and she hates that.  I guess we have 3 more months to try to get her prepped for that.  The MRI started 30 minutes later than scheduled so Kayla was ready to go.  She walked back with the nurse and the nurse anesthetist to the MRI room and I waited for the transport person to lead me down to the surgery waiting room.

The MRI lasted an hour and a half.  I told the nurse that I really needed to be in the recovery room before she woke up, otherwise life would be much more difficult. ;)  So, I watched closely on the screen they have in the waiting room that shows when each patient moves in to recovery.  Sure enough, right after Kayla got moved there, they came and got me and took me over to her.

The nurse in the recovery room was one we had had several times before and remembered us.  She told me she got confused when she was told that Kayla's mom was about to have a baby.  She thought she must have us confused with someone else because she knew that I had just had a baby not long ago.  Nope!  Ha ha.  I know it's crazy . . . and I just might be going crazy soon, but that 's us. :)

Kayla woke up fine and was good to go after a purple Popsicle.  We went straight over to the clinic afterwards so they could do a blood draw while she was still accessed.  They wanted to get one last blood sample to get her counts before her port was removed.  After that, they'll have to do it in her elbows like normal.  We will still be able to use the sleepy cream, though.    So, we got Kayla's blood drawn, said hello to everyone and were on our way home.  One more thing down. :)

October 16th - Pentamadine

A few weeks ago, the surgeon's office called me to schedule Kayla's surgery to remove her port.  After a little back and forth and changing plans, we finally got a date set.  It would be the 22nd of October.  Great.  That would be after her MRI and before the end of October.  The only thing was squeezing in the Pentamadine, which wouldn't be too hard.  I called the clinic and scheduled it with them for the 16th so we could fit it in with everything else going on.

So, we went to the clinic.  Since Kayla's appointment was in the early afternoon, I had Benson go to a friend's house and Sadie stayed home with Bryson again, so she could take a nap.  She is getting to be a lot more difficult to drag around to all of these appointments.  For one, because I am very pregnant, two, she is very heavy (24.5lbs!) and she is on the verge of walking, and three, she is starting to form her own agenda--which doesn't usually fit in with mine. :)  So, anyway, it was so nice to leave her home.

We weren't seeing a doctor, so that made our visit a little shorter.  We just went in, Kayla got accessed and hooked right up to her antibiotic.  She worked on some homework and played a Halloween BINGO game with Miss Jenn and we just hung out.  It was nice.

September Pentamadine

Sigh, to be honest, I don't even remember what day we went to the clinic in September.  But, I am almost caught up. :)  We did meet with Dr. Hansen and talk about everything getting set for October.  Her MRI was set for the 18th and she had a follow up appointment scheduled for the 24th, but the surgery to get the port out was not scheduled yet and we had to make sure that it was after the MRI and after Dr. Hansen had seen the MRI results, but all that had to be done before the end of October. . . just in case the baby comes early.  They are so great and accommodating there at the clinic.  Plus he wanted one more dose of Pentamadine in October.

Other than all of that talk, Kayla was doing great and looking great and as we already know, has been amazing through all of this.

Kayla got her dose of Pentamadine and we had fun visiting with all of the nurses in the chemo suite.  It is so different going back only once a month instead of every week.  They have become like family to us. :)

It still ended up being a very long day because we waited a lot for different things, so I was very glad that I was able to leave Benson at a friend's house and Sadie stayed home with Bryson, taking a nap for part of the time.  It was very nice.

A Big Meeting

I got a call from one of the hospital/MSTI school teachers about meeting together at Kayla's school to discuss some special "needs" she might have.  So, that first week of school, I went and met with this MSTI teacher, Kayla's teacher, the principal, the school nurse, the school counselor, and the school psychiatrist.

We spent an hour going through and creating a 504 plan (I think that is what it is called) for Kayla.  Basically, we went over any special needs she might have.  These included things like where she should sit in the classroom to accommodate her eyesight and her low immune system.  Her teacher said she would have her sit in her own desk next to the table where 8 other kids sit facing each other.  She would have her own set of supplies that are normally shared among the students.  Her teacher is also going to make sure to have Kayla wash her hands after recesses and other times when they have left the classroom.  The computer teacher will wipe down the computer and keyboard that Kayla will use, the music teacher will wipe down the instruments that Kayla will use, etc.  The nurse will inform me if there are any strange sicknesses going around school or times when many kids in a class are staying home sick at the same time, etc.

This made me feel a lot better about sending Kayla to school.  I was a little worried on the second day of school about Kayla's hand-washing.  I had always been with her to remind her to wash her hands each time she came in from outside, or before eating anything, or when we got home from any place.  I wasn't sure Kayla would be as good about it at school without me there.  So, after discussing a lot of things with this group of educators, I felt a whole lot better.  She has a wonderful teacher who is basically taking my place for those several hours while she is at school.  In some ways, I feel bad putting so much extra work on this teacher, but everyone there at the meeting was more than accommodating and wanted to do all that they could to help.  Even the principal shared an experience with her nephew who had recently been diagnosed with leukemia.  This was the closest she had been to anyone going through the chemotherapy thing and other stuff along with that, so she was very empathetic and wanting to do whatever we needed.

We are all going to be watching Kayla's progress through school--even past kindergarten.  The chemo can effect the cognitive process and as the work gets more difficult we might see more of this side effect.  For now, I know she is perfectly fine and doing great with school and learning.  It makes me a little worried about her future schooling, though.

So, all in all, it was a really good meeting and an official document was filled out all about Kayla and her condition.  I feel really good about how she is being taken care of there.  I still have my worries about kids sharing food at lunch and things like that. . . Kayla knows that she shouldn't share food with people, but still, she's only 5 and when a friend offers her a smartie or something like that at school, I am not super confident that she will say no.

So far she has done great and made many friends and has totally come out of her shell.  What a great girl!

First Day of School!

The kids were very excited for the first day of school.  Especially Kayla!  She had been asking me for months (since winter) if it was fall yet because that is when school started.

Nathan and Lily are old pros now.  Nathan started 4th grade and Lily started 2nd.

I took Kayla in to class on her first day.  For as clingy as she has always been to me, she did awesome.  We went in and she went right to her seat, sat down and was ready to go.  I gave her a hug and told her I'd wait for a minute before I left.  But. . . as I was walking back over towards the door (where I had parked Benson and Sadie in the double stroller), I could feel the tears starting to come, so I decided it would be better to just sneak out right then.

Kayla did fabulous and had no problems at all with anything.  She loves school and she loves her teacher.  She is definitely growing up.  Yay!

August 21st - Pentamidine

So, we had a visit to the clinic in August for Kayla to get her monthly dose of Pentamidine (antibiotic).  Originally, she was supposed to keep getting the antibiotic for 6 months after chemo.  But, I discussed with Dr. Hansen about getting her port removed after 3 months, which would be October.  It is a lot more difficult to get the Pentamidine through a regular IV (without a port), so he decided that Kayla would just get 3 doses, post chemo, and then we would be done with that.  We would also wait to remove the port until her next MRI, just to make things easier since she likes to go to sleep with the anesthesia through her port.

In the chemo suite, Kayla got to have some music time with Miss Stephanie.  She really enjoyed playing the little guitar. :)  It was nice to have a shorter day.

No Mo Chemo Party!

My good friend and wonderful visiting teacher offered to throw Kayla a party when she was all done with chemotherapy.  We decided to have ice cream sundaes.  I made about 150 waffle bowls for the occasion. 

My friend made these cute invitations (although most were just facebook invites) for the party.  I wanted the party to be a celebration for Kayla and also a big thank you for everyone who had helped us out in the past year and a half.  

This was our set up for the sundaes. . . the works!  

All I did was make sure the house was clean.  My friend decorated everything and made it look cute. :)

I didn't get many pictures of the party, but we had a great turnout and had fun visiting with everyone who came.  I did get a few pictures of some of the kids enjoying their ice cream.  

Thank you all for coming and helping and for everything!  It was so much fun to have a reason to celebrate!!

July 29th - Week 60!!

I have been so bad at keeping up since Kayla's treatments have ended!  In fact, I am not even sure if this is the right date or not that we went in to the clinic for her official week 60 visit because I recently got a new phone and lost all of my old calendar items.  So, this is my best guess at the day.  

Now, I do remember a few things about that visit.  First, Bryson came with us (and Sadie and Benson, too) and it was kind of a crazy visit.  I thought it would be nice for Bryson to come to the last official visit and talk to Dr. Hansen with me.  But, Kayla's appointment was in the early afternoon and by the time we were in the room waiting for the doctor, Benson and Sadie were both being very loud and cranky.  So, Bryson ended up taking them out to the car so I could actually have a conversation with Dr. Hansen.  Well, it was still nice that he came. :)  

Dr. Hanson examined Kayla and everything was great as usual.  We talked about things to watch for in the future.  Things like kidney damage, seeing that she keeps up well in school, goes through puberty at the right time, and keeping up with MRIs.  She will have them every 3 months for the next year, and then every 4 months for the year after that, then every 6 months and then annually.  Dr. Hansen was very happy with how well Kayla has done through all this chemotherapy.  Considering what she had to go through, we really can't complain about how amazing she has been and how many side effects we never saw (thank goodness!), she never even got any kind of infection or sickness.  We have been so blessed through it all.  Anyway, we had a really nice visit with him and are so happy to be DONE!  Well, done with weekly treatments. . . it's definitely not over yet. ;)  

Since it's been so long, I don't remember many of the details, but that is probably fine.  We are so thankful for all of your prayers and support.  We could not have made it through this without all of our family and friends and all those that we don't even know who were praying for us.  THANK YOU!!