SUCCESS!!

So, my plan for this week was to get Kayla to take zofran. . . somehow.  And of course, this week, after treatment, she had absolutely no nausea.   Usually, she'll at least feel like she needs to throw up a couple times: sometimes she will, and other times she'll just cough into the toilet.  Then she is good for the day.

I have been waiting for an opportunity to sneak the liquid zofran into something to see how she would do.  I have already tried the dissolvable tablet and that didn't work. (I tried putting it into her mouth while she was sleeping and she spit it right out--five times!  I also tried putting it in the middle of a Starburst and she spit that right out, too.)

Well, tonight the perfect opportunity arose.  We had our weekly pizza and movie night with the kids.  Tonight, we also had a little root beer.  I put a dose of the liquid zofran into her root beer and she drank the whole thing!  Yay!!  Now, I know she didn't NEED the zofran.  But, I also know that it won't hurt and I really wanted to have a for sure success before we go back for her next treatment.

We don't usually drink a lot of pop, but she might just have to have a special "treat" on treatment days when we get home so I can get some zofran in her.  I think I will also try orange juice because she really likes that, too.  I am so excited about this victory!  Hopefully, it wasn't a one time thing-- Kayla can be such a funny girl.

I am hoping that we will be able to cut out some extra fluids and steroid and waiting time for the normal second dose of zofran.  We'll see what the doctor says on Thursday.  We could potentially save 3-4 hours of time at the clinic (I am guessing).  Nice.

June 19th - Week 14

We went back to the clinic on Tuesday for Kayla's next treatment.  We didn't have to be there until 9AM this time, so I had time to get up and go walking, shower, get everyone ready, drop them off at a friend's house and be on the road around 8-ish.  

Things went smoothly when we got there.  They weighed her (she has pretty much stayed the same weight, some weeks lost a little, others gained a little), took her blood pressure and temperature, and accessed her port.  Then we went in and she started playing some musical instruments with Miss Stephanie.  

Marnie, the nurse practitioner that we were seeing that day wanted to talk to me alone, so while Kayla was busy having fun singing songs and making music, I went and talked to Marnie for a few minutes (this is a big step for her--letting me leave the room).  Marnie talked to me about Kayla's medications.  She has been getting zofran each week through IV, and the past few treatments she has also been getting a steroid (something like dextrose, I think) to help with nausea.  Most weeks she will wake up the next day and throw up and feel nauseous for a couple hours.  Anyway, the main thing that Marnie wanted to talk to me about was trying to get Kayla to take zofran orally.  (Sigh. . . been there. .  .tried that)  If she would take it orally, we could cut down on hours of extra fluids that she is getting each week at her treatments.  Also, they would start to cut down on the steroid until she was off of it.  The steroid is great for nausea, but it has more long term side affects.  I am all for cutting that out, also cutting down the time that we spend at the clinic each week.  

So, we made a plan to just try to get Kayla to take zofran orally that morning before we started chemo.  Stephanie was in with Kayla pretending to take medicine, trying to get her warmed up.  When they ordered it, they found out that the pharmacy at the clinic doesn't carry liquid zofran.  I already knew that she wouldn't take the dissolvable tablet, so we were going to try the liquid.  So, the quickest way to get it was to call in a prescription for her at the hospital pharmacy and have me go and pick it up.  Again, I went in to Kayla and told her that I had to go and get something and that I'd be right back.  She could have cared less what I was doing--she was having fun with Miss Stephanie.  Nice.  So, I went and picked up the zofran, came back and we got it all ready.  As soon as she saw medicine, she completely shut down and refused to take it.  Sigh.  We tried just about everything and she would not take it.  

So, we gave up and ordered the IV zofran so we could get started with chemo.  Bummer.  Kayla ended up with the usual, zofran, dextrose and then more zofran at the end.  And lots of fluids.  

Kayla did have fun while we were there.  Playing music is the big favorite. :)  

We did A LOT of coloring.  That girl never gets tired of coloring.  We colored at the table, colored in bed while watching a movie and back and forth.

Jessica, another child life person, gave Kayla a necklace with beads to string.  Now, this is a very special necklace.  Each bead represents something that she has done.  Her name is in the middle on those little square beads.  Then she has beads for hospital stay, port insertion, surgeries, MRI, LP, one for each port access, one for each chemo treatment, and so on (there is a long list).  She will continue to get beads each week until she is done with treatment.  They were a little behind in getting her started with it so we had some catching up to do.  These are the beads that she has earned so far. . . and it completely filled up the necklace!  It is a nice way to keep track of everything and see it when we are all done in a more tangible way.

So, around 12:30PM or so, I asked Penny, the chemo nurse, what our time line was looking like (i.e.  how much longer??)  She told me that Kayla still had over an hour of fluids to go and then if I wanted her to get another dose of zofran before we go we'd have to wait until 4:15PM.  Ugh!  Someone had been a little sneaky over the past few treatments and had given her the second dose of zofran after 4 hours (which was very nice), but Marnie corrected that and said they had to be given 6 hours apart.  I  knew that I would not be able to get Kayla to take it at home and that she would wake up throwing up if she didn't get that second dose, so we waited around for 4:15PM . . .

Of course, on the way home we were getting into the beginnings of rush hour traffic and then there was a truck that lost a bunch of bags of something that spilled all over the freeway that brought us to a dead stop and then a crawl for awhile, so it was after 5PM when we got home.

It was a very, very long day.  I REALLY want Kayla to start taking zofran orally.  We are going to have to work on that this week. . .

June 13th - Week 13

We have officially started the Maintenance phase of chemo.  Yesterday we went back to the clinic for chemo.  It was an early morning, we had to leave by 7:30AM, which includes getting everyone ready, packing up a days worth of stuff to do and food to eat, and dropping off Nathan and Benson at a friend's house.  Lily wanted to come with us this time.   

We got there right on time.  Nurse Anna came and got us to go back and access Kayla's port.  She is an old pro at this now.  As long as she has her smelly chapstick close to her nose and a sucker in her mouth, she is good. :)  

We met with Dr. Meeker this week.  I told him how Kayla's dental surgery went and reminded him that I was the one he talked to at 2:30AM the other day.  She has been doing fine ever since then--I am so glad we didn't have to take her in to the hospital and that she didn't get any worse.  

Kayla's blood counts looked good to go on with chemo, so we went ahead with everything.  

We all got settled into the chemo suite.  Lily and Kayla colored for a little bit.  Then Miss Stephanie came in with all of her fun musical instruments.  They had fun playing with her.  We watched a little bit of Snow White and colored some more.  

It was such a nice day yesterday and there is a great patio area off of the chemo suite where we can go outside.  So we did!  The girls were out there a lot.  Miss Jenn (with Child Life) came and had lots of fun things to do.  Lily had fun practicing her jump rope. 

Kayla had fun coloring outside and playing My Little Pony with Miss Kim (with Child Life)

The girls each filled out a Father's Day sheet while we were there.  They wrote out their answers for different questions about their dad.  I am excited for him to see it.....they are pretty funny!

There was a lady out in the lobby who had sewing projects for the kids.  Lily and Kayla both helped sew a pillow case to bring home.  They absolutely love them.  This lady comes in every other month to volunteer.  There are so many people who bring things in for the kids and who volunteer.  It is really neat to see all of it. It's still hard to believe that we are on the receiving end of all of this...

Nurse Meredith had a very cool trick that she showed us.  She had some dry ice that she put in a styrofoam cup.  She added water, which created a lot of steam, and then put a rubber glove over the top.  The glove filled up with steam until it was standing straight up and it eventually popped off the cup.  The girls really liked it and had her do it two more times!

Here are their finished pillow cases.

So, while we were inside, I heard Dr. Meeker's nurse, Erika, come in and tell the nurse administering the meds that Kayla's orders were in and what she was getting--which included Pentamidine.  I was a little confused by this because she just got Pentamidine a few weeks ago (it hadn't been a month yet) and last time we had to come in on a separate day because her doctor does not like to give it on the same day as Zofran.  Also, they just hadn't told me they were giving it to her today (technically, yesterday).  I kind of like to know what she is getting...

I asked the nurse about it.  She told me that they are giving her the Pentamidine a week early (I should have asked why, I know, because really, we will be in next week, too)  and that it is just a doctor preference thing about giving it with Zofran or preferring not to.  Dr. Hansen does not like to give them on the same day because of some rare risks of serious heart side effects.  Dr. Meeker is perfectly comfortable giving them on the same day.  So, it just depends on the doctor that we see that day.  I guess I wasn't totally happy about this because all along I have been told about not mixing the two and all of the sudden, it is okay.  I really wish we could just see Kayla's doctor each week!

Another thing I am a little worried about is that we were scheduled to come back in on Tuesday next week.  Yesterday was Wednesday, which is already off from our usual Thursday that we have been doing all along. But now, she won't even have a full week in between treatments.  I really hope that her blood counts have enough time to come up enough to be ready for another dose of chemo on Tuesday.  If they aren't then that will put us back a week because they won't be able to give her a treatment.  She has been so close to the line lately that I worry that she won't quite make it back to that point.

I have noticed over the last week or two that Kayla's energy seems to be going down just a little.  She is wiped out by the end of the day and sometimes during the day she gets really tired.  It probably doesn't help that I am trying to keep the other kids busy by going to the park everyday and doing other summer time activities.  She is doing great keeping up with everything, but I can tell it is starting to wear her out (it's wearing me out!).  It makes me think that we still have such a long way to go and I hope that she can make it through all of this while having a "normal" life.

To Go or Not To Go. . . to the Hospital

So, the night after Kayla's dental surgery was a little bit of a scare for us.  She woke up at 2:30AM with a terrible barking cough, fever and sore throat.  She was crying for medicine, which of course, she refused to take.  But, I got her an ice cube to suck on and that seemed to make her throat feel better.

I took Kayla's temperature and it was 100.6.  Although, she was flailing around quite a bit because she doesn't like me to take her temperature (I have a very easy digital one that you just stick in the ear for a second. . . ).  I decided to call the doctor because I was thinking that we'd have to bring her in to the hospital.  The doctor said that he wasn't worried about her cough--it was probably from the surgery-- and I didn't need to bring her in unless her temperature was 101 or if she was having trouble breathing.  (Note:  the doctor on call was not one of my favorites)

So, I told him thanks and went back into Kayla.  She seemed pretty miserable.  I was able to take her temperature 3 more times (I wanted to be sure to get an accurate reading) with Bryson's help.  It was 101, 102 and 101 (each of them point something).  That got me a little more worried.  We were trying to decide what to do.  She calmed down and was going back to sleep.  Her throat felt better from the ice, she wasn't coughing anymore and she did have two very warm blankets that could have helped her body temperature to rise a little extra.

We decided to wait a little while and see how she was doing.  About a half hour later, I felt her head and her fever seemed back down to normal and she was sleeping peacefully.  I was awake for about 2 hours, continuing to check on her and having a hard time going to sleep.

Kayla slept the rest of the night without any problems and has been doing good.  She does still cough a little bit and has had a little runny nose, which worries me, so we will have to keep an eye on it.  We go back in to the clinic on Wednesday next week for chemo again if all is going well.

June 7th - Dental Surgery

Today was Kayla's dental surgery.  Just so you know how far she has come since the beginning, I was able to talk to her yesterday about what we'd be doing.  A couple of months ago, I would not have done that.  She did much better not knowing what was about to happen.  But, I told her yesterday that we were going to be getting up VERY early and going to the hospital.  I walked her through everything (including no food or water) and she was totally fine with it.  Kayla even reminded me to wake her up in the morning. :)  

So, my day started out at 5AM  (well, actually more around 4:30AM. . . I could not sleep for that last half hour and it seemed to drag on for forever!)  I got up, got ready and ate breakfast before I woke Kayla up so she wouldn't see me eating.  I told her she could just wear her pajamas, so after she woke up I put the sleepy cream on her port and we headed out to the van at about 5:30AM.  In the car, Kayla told me that she was "swallowing her slobber."  She never once complained about being hungry or thirsty.

We got to the hospital right at 6AM and got registered.  Then they took us down to the surgery waiting room (I think that's where we went . . . I was kind of tired).  A nurse then came and took us back to pre-op.  I have to say that this whole thing was A LOT easier than when we were there a couple months ago getting her port put in.  

We were back in the pre-op room for awhile waiting, talking to nurses, the doctor and anesthesiologist.  The nurse told me that they were going to use a gas mask to put her under and then access her port.  I wasn't so sure that would be a great idea.  Neither did Kayla--she does not like the gas mask thing.  I told the nurse that she would be much better accessing her port and using it for the anesthesia.  Thankfully, they did that.  I could tell that the nurses there don't access ports all day everyday like at the clinic. ;)  It took the nurse like 10 minutes just to get everything out of the packaging and and go through the procedure of accessing her port.  The nurses were very impressed with how well Kayla did.  It is no problem for her anymore.  Yay!  

After her port was accessed, they gave her something to relax her.  I got all dressed up in the operating room attire (body suit, booties and hair net) and got into the bed with Kayla.  We both got rolled down the hall into the operating room.  In there, we moved Kayla on to the operating table and I held her as the anesthesiologist gave her medicine to knock her out.  She went to sleep pretty quickly and I got let back to the surgery waiting room.  

Everyone kept asking how I was doing.  Honestly, this was so much easier than the last time that I was doing just fine.  It was a little bit hard to see her asleep and walk out of the room, but they let me give her a little kiss on the cheek before I left.  I waited for about 45 minutes and then someone came and told me that there was an update from the operating room for me.  So, I went to the front desk and the nurse was on the phone for me.  She told me that they were halfway done and that everything was going great.  She was just afraid that I was out there worried about how it was going.  Actually, I was fine, but I thought it was very nice of her to give me an update.  

After about an hour or so of waiting, Kayla was done and in recovery and someone came and got me and took me back to her.  I got there just before she woke up.  Phew!  I specifically told a few different nurses that I needed to be back there before she woke up.  Both times she was put under at the beginning of this whole thing, she woke up before I was back to her and she freaked out both times.  I did talk to Kayla before hand and told her that if I wasn't there yet, not to cry, but that I would be there right after she woke up.  This was another big thing for her. . . she told me "okay" and seemed fine with it.  Wow, how far she has come!

Kayla woke up just fine, asked for water and a popsicle and and then went back to sleep.  The nurse kept telling me that she was doing fantastic and that everything looked great, so when she woke up we could go home.  We were in recovery for about an hour before we left.  The nurse de-accessed her port right before we left and was amazed at how well Kayla did.  I told her that she's been doing this weekly for the past 12 weeks, so she is finally getting used to it all.   

Here is another major milestone for Kayla. . . the nurse asked her if she wanted to ride in a wagon or a wheelchair.  She chose wagon.  When the nurse asked Kayla if she would let her lift her into the wagon, Kayla said yes.  What?!  I was shocked.  She never lets anyone move her carry her but me.   So, the nurse lifted her up out of bed and into the wagon.  Two other nurses pulled her down to the main lobby --and get ready for this--one of them told me to go out and pull my car around to the front.  They would take Kayla a different way to meet me.  I told Kayla where I was going . . . and she was totally fine.  Whoa.  So, I went and pulled the van around and they brought her out to me and she jumped out and got into the van.  

We got home by 11:30AM.  Kayla was great the rest of the day.  She was a little tired at first, but later in the afternoon she was up and around like normal.  

I am so glad that this is over!  And by the way, she has 7 sliver crowns and 1 filling.  Sigh. . . she comes from parents with weak enamel.  

What an amazing little girl!

June 5th - Week Off

We are in the second of Kayla's off weeks now.  We went in this morning just to check her blood counts.  It was a very smooth and easy visit.  We didn't even meet with a doctor today.  They just accessed her port, and took some blood.  Once they had her blood counts back, they gave me the print out and sent us on our way.

Her counts were good today.  In fact, they met the criteria to do a treatment if it would have been a chemo day.  They will continue to go up over the next week since she won't have another chemo treatment until next Wednesday.

Now we have her dental surgery on Thursday.  I will be glad when that's over!  I am not looking forward to leaving at 5:30AM to get to the hospital with Kayla who will be tired and hungry and thirsty and won't be able to drink or eat anything after midnight.

May 31st - Week Off

Kayla has now completed the Induction portion of her chemotherapy.  I think of it as the introduction.  Now she has two weeks off and if her blood counts are up to a certain level, she will start the Maintenance part of her treatment.  The Maintenance part will consist of 4 weeks of chemo, 2 weeks off.  That will continue to repeat until she is done with her 60 weeks of treatment.  

So, last Thursday, was her first off week.  She did not have chemo, but we still had to do the whole sleepy cream, go to the clinic, access her port, take blood and meet with a doctor.  

Kayla did fabulous for all of it.  She even wanted to go in to the chemo suite before we left and say hi to Miss Penny (the nurse who administers the fluids and chemo) and Miss Stephanie (music therapist).  She, of course, wouldn't talk to them, but I think they still felt special that she wanted to go and see them. :)  

While meeting the the doctor (our first time with Dr. Meeker)  we went over Kayla's schedule and talked about her dental surgery, which is next week.  Everything is being worked out between the clinic and the dentist's office and the hospital.  This is very nice for me because all we have to do is show up when we are supposed to.  

One question I asked this time was if there was anything we could do to help Kayla's blood counts to come up faster, for example, certain foods to eat.  The answer was no.  Her bone marrow is taking a beating and it just has to recover on it's own and keep reaching the level it needs to get to to take another beating.  Kayla's counts have been pretty low for a few weeks, so I am glad that she has a couple weeks to recover and will hopefully be doing good to start her next treatment.  

So, the next step is we will go in again on Tuesday to the clinic and check her blood counts again in preparation for the surgery.  Dr. Meeker was pretty confident that she will be fine because her platelets have been at a fairly high level this whole time and that is what is important for surgery.  Then Thursday (June 7th) will be her dental surgery.  We will have to be at the hospital at 6AM (yipee) and the surgery is scheduled for 8AM.  

So much for two weeks off! Ha ha.  Even on her off weeks of chemo, we will still have to go in to check her blood.