January 22nd - Week 38

Yesterday began with Lily coming in to our bedroom saying that she couldn't go to school.  Uh-oh.  She was starting to get a little cold. . . but I told her that she had to go to school.  Kayla had clinic and Daddy had work and I couldn't take her with us or to someone else's house.  She got ready, but when the bus came she would not go out the door!  I was just a little frustrated. ;)  I had to leave by 8AM and Bryson had to be at the courthouse early, too.   Fortunately, Bryson had just enough time to run Lily out to school (which is like 15 minutes away).  So, the rest of us hopped in the car, dropped Benson off at another friend's house and headed to the clinic.  

At the clinic, Kayla got checked in, accessed, and we met with Marnie.  We got to go to a new section that they have been doing construction on.  It is really nice!  When we met with Marnie, she hadn't looked at Kayla's MRI results, so she quickly looked over them.  She told me that they look good.  There was no metabolic activity (which means that nothing is growing) and that her optic nerves were thicker (when I asked her what this meant. . . her answer didn't make sense to me).  But, there is a Brain Tumor Conference on Thursday, so next week we will get some more specific results of what they (a whole bunch of different doctors, nurses, teachers, etc.) think.  

I also talked to Marnie about other possible ways to help with Kayla's nausea, since she is so stubborn about taking zofran.  We discussed meeting with an acupuncturist ( just to learn pressure points, I don't think Kayla would go for the real thing ), leaving her port in and having home health come in to give her a dose of IV zofran through it, a patch- but she is too little for it, or just staying at the clinic for 6 hours after she gets her first dose.  Since we are there for about six hours anyway, I asked if they could give Kayla zofran as soon as she is accessed, then it wouldn't be as much wait time.  We are going to try that next week.

Our time in the chemo suite was nice.  Kayla watched a movie, played with the dollhouse again, did music with Miss Stephanie, worked on a weaving project with Miss Jenn, and Sadie took a nice long nap.  So, I was able to finish reading my book and visit a little with some of the nurses and another mom there.      

We got done at about 3:15PM and headed home.  My visiting teacher brought dinner (thanks!) and after a hour or so of frustrating coaxing, I got Kayla to take zofran in some hot chocolate.  YAY!  This meant that I would have a much better chance of getting some decent sleep (Benson has been waking up almost every night lately wanting to read a book)!

Kayla did make it until almost 7AM.  She threw up a few times this morning, but not too much and she refused to take any more "hot chocolate" or anything.  She would rather throw up--even after telling me how nice it was to sleep all night without throwing up.  What a confusing child!   But it ended up being a very nice "day after clinic" day.  These are usually the days I dread.

Glasses!

I mentioned in my last post that Kayla got new glasses.  They are for safety, not necessity.  Since she can only really see out of her right eye, having glasses will be just added protection to that eye.

She is still a little shy about wearing them.  It took me a few days to actually get a picture of her.  They are super cute!

January 16th - MRI #4

The events of last Wednesday started at about 1AM.  Before going to bed, I was totally unable to get Kayla to take zofran.  She was being super stubborn about it.  Bryson was gone to a meeting and I was getting all the kids into bed.  So, I didn't have a lot of extra time to coax her into taking it.  So, at about 1AM, Kayla came running into our bathroom . . . throwing up.  She told me that if she woke up throwing up, she'd take a "pill."  But, as usual, she went back on that offer.  She was throwing up for over three hours every five, maybe ten minutes.  I was just too tired to fight with her.  I told her to let me know if she was ready to take a pill and be done throwing up.

I got up and helped her a few of the times, but then I just went back to bed.  I couldn't sleep, but I just lay there listening to her throw up, flush, rinse her mouth and brush her teeth.  Sometimes she would go back to her bed, but after awhile, she was so tired, she would just lay on the bathroom floor asleep until she had to throw up again.  As I write this now, it is easy to have sympathy for her, but at the time I was thinking that she was just so stubborn and I was not going to spend all night helping her throw up.

I had put a zofran in her water cup, so finally, I was able to convince her to take a few sips of water.  By 4AM or so, I think she had drunk enough of the water/zofran to help the nausea pass.  Ahhh, now I could finally go to sleep - just kidding.  Benson woke up right after I was certain Kayla was down for the night, and he wanted to read stories.  I was up with him for awhile before he went back to sleep.  I think it was close to 6AM now.  At 6:30, Nathan and Lily were up getting ready for school and I heard Kayla throw up a couple more times.  The last couple times, she just stayed in bed and threw up in her bowl.  There wasn't much to throw up anyway, then she'd go back to sleep.

So, then Sadie was awake, the kids were off to school, and Kayla was still throwing up - more regularly again, I think what little zofran she got had worn off.  The only good thing about Kayla's nausea was that her MRI wasn't until 1PM and she couldn't have anything to eat or drink before hand.  That wasn't hard.

At around 8:30AM, I called the clinic to see if they could give Kayla some IV zofran when they accessed her later that morning.  The nurse said that it would be no problem, and scheduled us to come in a half hour earlier, at 11AM.  Great!  Then, in my zombie state, I realized that I didn't have a babysitter for Benson.  I was worried about getting him one for the day before - for clinic day - but I didn't get one for the MRI.  Now I am imagining taking him with me and feeling a little overwhelmed.  I am so blessed to have wonderful friends, though, who are always there to help me out.  I called my good friend and asked her if she could watch Benson.  I also realized that we wouldn't be home when Nathan and Lily got home from school, so I asked her if they could go to her house.  A HUGE wave a relief and gratitude passed over me when that got taken care of!!  

So, I got us all packed up, dropped off Benson off and headed to the clinic.  Kayla threw up twice in her bowl on the way there, but the nurses were able to get her accessed and get her zofran before she threw up again.  It made me tear up a little just watching how loving and caring the nurses are that take care of her.  They are the best. 

Kayla was pretty tired when we got to the clinic, so here she is in the lobby . . . she was curled up so cute that I wanted to take a picture, but she didn't want one, so she put her foot up to block it.

We had about a half hour to hang out at the clinic before we needed to go over to the hospital.  The nurse at the clinic called transport at the hospital to come and pick up Kayla in a wagon.  She was happy about that.  And she was feeling better with the help of the zofran.  We learned that there is a "secret" tunnel between the clinic and the hospital, so we didn't have to go out in the FREEZING cold weather (it has been ridiculously cold here for way too long!).

At the hospital, Kayla got registered and then they took us down to the MRI section.  Everything went smoothly getting ready for the MRI.  We talked to a nurse, the anesthesiologist, and the nurse anesthetist.  Then she went in for her MRI.  This picture is Kayla playing with some magnet toys before the MRI.  She still didn't want to smile. 

The other eventful part of our day was Sadie.  I knew that she had messed her diaper while Kayla was preparing for the MRI, but by the time I was able to change her diaper she had leaked through on to all of her clothes.  Unfortunately, she did the same thing the day before and I used her extra set of clothes from my bag and didn't replace them.  So, she had to go by diaper. . .

When the MRI was done, Sadie and I went to the recovery room with Kayla.  The sweet nurses there gave me a hospital gown to put on Sadie.  We also saw one of the nurses that we have seen a few times before, so it was fun to visit with her.

Kayla woke up fine and we were soon on our way.  I had gotten a call that morning telling me that Kayla's glasses were in, so we stopped by and picked them up.  It ended up being after 5PM before we got home that day. . . so I was also grateful to have my good friend offer dinner to us.   It was a long week. . .

January 15th - Week 37

Tuesday morning, we had to leave by 8:30AM.  After Nathan and Lily were on the bus, I got everything (and everyone) packed up to go.  Benson went to another friend's house for the day and Kayla, Sadie and I were on our way.

We got to the clinic, got checked in, accessed and met with Marnie.  When Kayla's blood counts came back, they were good enough to start a new cycle of treatment.  Yay!  So, we were staying for the day.  It still took a little while to get her fluids started, so that always makes the day a little longer.

Kayla's next MRI was the next day.  For anesthesia, they typically have a gas mask.  But, Kayla does not like those.  She prefers to be accessed and have the medicine go through her port.  Our past few experiences with getting accessed at the hospital have taken forever.  They don't do it a lot, and have to track down the right kind of needle.  So, I asked Marnie, and then another nurse, if it would be possible to just stop at the clinic before her MRI, get accessed and then go over to the hospital.  I thought it might be easier for everyone.  The nurse said that would be totally possible and set us up an appointment to come in at 11:30AM the next day (Kayla's MRI was at 1PM).  Great!  

Well, our usual spot was taken in the chemo suite, so we were in the other room in one of the chairs.  Kayla didn't seem to mind.  I didn't mind either because there was a normal chair for me to sit in, instead of being at a kiddie table all day.  Kayla brought her new movie, "Barbie and the Diamond Castle" to watch while we were there.  I have to admit, I really like that movie, too. :)  It has some great songs in it that are always stuck in my head.

Sadie was an angel and slept for most of the time we were there.  I was able to make some calls to get dinner arranged for someone in the ward and get some fun reading in.  

I tried to get some pictures of Kayla. . . she hid behind her pretzels. . . 

                                     

Once Sadie was awake, Kayla was more in a mood to take a picture.

Kayla played with a fun Little People dollhouse towards the end of the day.  She also painted a magnet, colored, and worked in a preschool book with me.

Kayla finally got done sometime after 4PM.  By the time we drove home, picked up kids, picked up dinner from my visiting teacher, and got home, it was after 5PM.  What a long day!  Then I got a call from the person taking dinner to someone in our ward and her car wouldn't start.  So, I went over to pick up the dinner and delivered it to a lady in the ward.  She works on Sundays and hasn't been in the ward very long, so I hadn't met her.  I had a really nice time visiting with her, so I was glad that I was able to help out.

By the time I got home, Bryson had to leave for a meeting, so it was a crazy night of getting all the kids in bed.  Actually, I can't remember many details about that. . . I think they get blocked out once the kids are asleep.  :)

January 8th - Not Quite Week 37

Last night, I was starting to feel the stress of packing up for another long day at the clinic.  Needing to pack food, activities, packing for Sadie, on top of being tired from a long day already.  Plus it snowed all day and the roads were icy and terrible.  We would have to leave as soon as we could once Nathan and Lily were on the bus.  Plus my babysitter for Benson fell through and I needed to find another one.  Sigh.

Bryson had two court hearings that were canceled, so he offered to come with us.  That would be nice.  Later last night, he had a brilliant idea - he could take Kayla and I could stay home.  After thinking about that  for about 10 minutes, I felt the stress lift off of my shoulders.  Yes!  Great idea!  I wouldn't have to pack up a zillion things and lug Sadie (I will tell you how much she weighs after her appointment with the doctor tomorrow. . . but it's got to be a lot!) around, drive on icy roads, etc.  Plus, I would get to stay home with just Benson and Sadie and possibly have a nice slow day.  At least as relaxing as possible with a busy two year old boy. ;)

Anyway, I was very grateful that Bryson offered to take Kayla, even though he is super busy with work right now.  What a great guy!!

So, the drive went well (he tells me. . . ) and things went well at the clinic.  They met with Marnie.  Kayla's neutrophil count was up over 2000.  Yay!  But, her platelets were at 80.  Boo.  This was supposed to be the start of a new 6 week cycle, so her platelets need to be at least 100.   So, she just barely missed counts.  That's one more week delay.  On the bright side, though, there will be no battle with zofran this week!  Kayla did get Pentamadine, though, so that was nice.  It takes an hour and when you add an hour on to an already long day, it gets longer. . . so, that is done for another month.

Hopefully by next week her counts will be up.  Although, looking at my calendar, we may have other issues. Next Tuesday, Kayla is scheduled for chemo and next Wednesday she is scheduled to have her next MRI.  The problem comes when she needs to take zofran, but can't eat or drink anything before the MRI.  We'll see how that works out next week. . .

January 3rd - Week 36

Wednesday night, I started feeling sick at dinnertime.  At about 10PM I  threw up and felt a little better.  I hoped this sickness would pass quickly and not pass on to anyone else.

So, Bryson was planning on taking Kayla to the clinic Thursday morning, but he had to be at the courthouse for a hearing at 9AM.  Kayla's appointment was at 10:30AM, so they needed to leave by 9:45AM.  It was going to be tight.  I had made arrangements for Lily to go to a friends house, I I decided to leave those in place, even though I was staying home.

Well, at 9:45AM, I still hadn't heard anything from Bryson, so I figured I had better be prepared to take Kayla.  Nathan wanted to stay home, so I loaded Benson (still in his pj's), Sadie and Kayla in the car and we took off by 10AM.  Right when we got in the car I heard from Bryson, but he was just getting done and still at the courthouse, so we headed to the clinic.  I was feeling better by then, once my adrenaline kicked in. :)

Both Benson and Kayla did great at the clinic.  There was a little bit of juggling going on in the room when we were waiting to meet with Marnie.  Both Kayla and Benson wanted to sit right by me on the office bed-table and I was holding Sadie, too.  It's times like those when I could use a couple extra arms.  Ha ha.

Meeting with Marnie went fine.  Nothing major to talk about.   But, Kayla's counts were lower than last week.  Both her neutrophils (they were 790 and need to be at least 1000) and her platelets (I forgot, but they were under 100) are low.  Too low to do chemo - if it were the day to start a new cycle.  She is supposed to start her next cycle next week, so we really are hoping that they will come up and we don't have another long delay!

So, we left the clinic and were on our way to the parking garage when Kayla asked, "Why do I have to keep this in?"  Oops!  She was never de-accessed.  So, we went back into the clinic and found a nurse to de-access her port.  I am glad that Kayla said something before we left because otherwise, I would have had to do it while being talked through by the nurse. ;)

We made it home and back to our day of cleaning and grocery shopping.  Later that afternoon, the kids told me that someone had pulled up at our house.  Then I remembered that it was a clinic day, which meant my visiting teachers were bringing us dinner.  Thank you!!!

(Kayla, Benson, and Sadie waiting in the lobby with their dum dum suckers they got when Kayla's port was accessed)