July 19th - Week 18

Last Thursday, we went in and met with Kayla's doctor, Dr. Hansen.  I felt like we had a really good visit with him.  Bryson went with us, too, because I was told that we would hear about what was discussed at the Brain Tumor Conference and that if he could make it, that would be good.

Well, neither Dr. Hansen nor the nurse in with us was able to make it to the conference, so we didn't really get any information about it.  But, Dr. Hansen really stressed that the main way we know how Kayla is doing is by looking at her and seeing how she is doing.  Which, she is doing fabulous.  She still has tons of energy, she still has her hair, she has almost no visible side affects from the chemo and she is adjusting really well to going to the clinic each week, getting accessed and adjusting to everything.

I asked Dr. Hansen what things would be like for Kayla after her 60 weeks of chemo were done.  He said that would still be having MRI's every three months and then every 6 months and eventually every year, but she will probably always be having one every year for years.

He also said that the type of tumor that she has has a high percentage of relapse.  That is why she will need the MRI's so frequently because there is a good chance that sometime down the road the tumor will start to grow again.  I asked him what we would do then and he said that Kayla would have to do another round of chemo.  If she is older, they would possibly do radiation, too, but he likes to avoid that if possible because of fertility issues.

Dr. Hansen also said that even though Kayla's results for neurofibromatosis (NF) came back negative, he is going to just assume that she has it.  It won't hurt anything treatment wise to do that.  We will just have to wait until she gets older to see if she develops more of the symptoms and then tests positive for the condition.  He told us that once she starts school, they have lots of resources for cases like hers where she might need some extra attention.  They will make sure that she has everything that she needs to be successful in school (people with NF typically have some learning disorders).  It is very encouraging that her eyesight is so good. She can function normally with just her vision in her right eye.

We also addressed the MRI that Kayla had recently.  Dr. Hansen said that you don't typically see results like he saw in Kayla's where there is a visible decrease in size.  This seems very good.  But, also, he said he's not sure what to think yet because the chemo is killing cells that multiply rapidly.  Kayla's tumor is typically a slow growing tumor, but if the chemo is doing a good job on decreasing the size of it, it might not be as slow growing as usual ones are.  The cells of it might be dividing more rapidly and that is why the chemo is working so well.  We just don't know much and have to just be grateful for how well that she is doing.

So, overall, I guess it wasn't a very positive conversation when we are talking about how she is going to have these issues for the rest of her life and how she could very possibly being doing chemotherapy again or even multiple times.  But, I didn't feel discouraged.  I know that I have been very blessed with the strength to handle all of this and to just take it one step at a time.  

MRI Results and July 11th - Week 17

On Monday, I still hadn't heard any results from Kayla's MRI, so I called and left a message at the clinic asking them if they had received any results.  I didn't hear back from them until Tuesday morning (and the nurse was very apologetic).  She told me that Dr. Hansen  has not had a chance to look at them yet, but she looked at what was written on them and it sounded very positive.  It said that there was a "marked decrease in size" of the tumor and "no new abnormalities."  I think that is very close to quoting what it said.  Anyway, very good news!

So, today (Wednesday), we went in for a blood count check.  Her counts were good. . . but low (low enough that if we were scheduled for chemo, she wouldn't be able to do it because they didn't meet the criteria).  They were on the rise, though, so with two more weeks until her next treatment, she should be fine.

We met with Marnie, the nurse practitioner,  and she said that Kayla looks great and is doing great.  She also commented on her MRI results.  She read what they said again and then told me that typically when they have patients with the same tumor as Kayla, they do not see any change in size from MRI to MRI (which are every 3 months).  It is usually over a longer period of time that they see change in size, like a year or a year and a half.  So, to see a "marked decrease in size" in just a 3 month period is FANTASTIC and very unusual.  Yay!!  The chemo is doing it's job!  And even more so are all of your prayers!!

Marnie also told me that there is going to be a brain tumor conference at the end of this week with all kinds of doctors, nurses, teachers, and just a whole big group of professionals that get together and discuss each case.  They will be looking at Kayla's MRI and making official conclusions about her condition.  We will meet with Dr. Hansen next week and he will tell us about what was discussed about her case.

So, great news all around.  On our way home, I heard from my friend who was watching Nathan and Lily that there was a great sale going on at Old Navy today only.  I ended up meeting her there and finding some good deals on school clothes.  It was a little (okay, a lot) chaotic with all four kids asking me if they can get this or that all at the same time (Benson was crying because he had hardly eaten any lunch and was hungry), but we made it through somehow and I was soooo ready to go home.

We got out to the car and I realized that I locked my keys in the van!  Ugh!  It was 100 degrees outside and we were all  completely tired and starving. We went into Petco and looked around at the animals while I made some calls.  Unfortunately, we don't have a spare key (and we keep saying we need to make one!) to our van, so Bryson called a locksmith to come out and open the door.  We waited for OVER AN HOUR for the guy to come.  It was so miserable.  Everyone was tired, cranky, hungry, and complaining.

We finally made it home and I was so grateful to have a friend bring us dinner tonight!  My visiting teachers and other friends take turns bringing us dinner whenever we go in for Kayla's appointments.  It is such a blessing.  Thank you!!!

Follow-up with Dr. Lee

Before I tell about our trip to the ophthalmologist,  I have to add in a quick doctor's appointment story from Monday.  I took Nathan and Benson in for their well check appointments which were a few months overdue.   Bryson was home, so I left the girls home with him.  In the waiting room, Nathan and Benson were playing together.  A lady asked me how far apart they were in age.  I told her 6 years.  Then she told me that I sure waited awhile in between kids and that 6 years was a big gap.  Ha ha!  I told her that I have two more in between those and one on the way.  She was nice and asked how old they were and stuff like that.  I just thought that was a funny comment.

So, Tuesday (yesterday), Kayla had an appointment with Dr. Lee, her ophthalmologist.  Kayla did really well saying or pointing at the letters she needed to and answering questions.  When she had her right eye covered, which is her good eye, she could hardly see anything.  Dr. Lee stood about 4 feet away from and was moving her hand up and down or side to side in large motions, asking Kayla which way she was moving it.  Kayla could tell which way her hand was moving, but that was about it.  Up close, she couldn't see very well either.

Her right eye is normal for her age.  She measured at 20/40, which is about the same as her last appointment.  Her left eye is 20/2500.  I was mistaken when I posted about our last trip to Dr. Lee.  I think I said her vision was 20/250.  Dr. Lee told me it was 2/250, which was equivalent to 20/2500.  Kayla does compensate very well.  You can't tell at all that she can only see out of one eye.  We will go back in two months for another follow up appointment.  She did not have her eyes dilated this time, but they will do it next time.  And that is that.

July 6th - MRI

One thing I didn't mention about Kayla's treatment yesterday is that we left her port accessed when we went home.  She was going to have it accessed for the MRI the next morning, so I asked her if she wanted to take it out and than have it put back in the next morning, or just leave it in.  She said she wanted to leave it in (which surprised me).  Now for our day. . .

Today started right around midnight.  ;)  Kayla woke up crying because her accessed port hurt.  There wasn't much I could but try to get her to go back to sleep.  Penny, the nurse, did explain to me how to take it out if she changed her mind, but I wasn't sure I felt comfortable doing that yet.  So, I just kept trying to calm her down and get her to sleep.  She kept crying on and off (mostly on) for the next 3 1/2 hours.  Ugh.  I think 3:30AM was the last time I looked at the clock and I hadn't really even slept yet for the night.  I was already exhausted from the past week of crazy busy-ness and 4th of July festivities, treatment yesterday, and knowing that we have to leave by 5:45AM this morning.  So, after almost 2 hours of sleep, I got up and ready to go.

Kayla was much better when she got up and didn't complain about her port hurting.  She didn't cry about being hungry or thirsty at all.  She did ask me on the way over if this was her last trip to the hospital.  I had to tell her that no, we would do this again every three months.  That got me thinking. . . three months from now is my due date.  That will be interesting. :)  For her next MRI, I will either have a brand new baby (if she comes a little early), or I will be just about to have a baby.

When we got to the hospital we went in and got registered.  I had explained to Kayla that this would be just like her dental surgery a month ago.  She seemed okay with everything.  We went down the the MRI part of the hospital and talked to a super nice nurse for awhile and the anesthesiologist.

Side note:  As I was thinking through everything last night, I realized that Kayla would need another dose of zofran this morning, but she couldn't eat or drink anything. . . . so I would not be able to give it to her in OJ.  I called the doctor at about 8:30PM and thankfully, Dr. Hanson was the one on call.  I told him the situation and he said that he would leave orders for zofran with the nurses and for me to call them at 8AM when they got to work and they could figure out how to get it to the hospital to us.  I felt pretty good about this.  It is usually around 8AM when she starts to feel nauseous, so I thought she might be okay up until the MRI.

So, back to waiting for the MRI:  I told the nurse that she had had chemo yesterday and usually gets   nauseous in the mornings and explained about the zofran situation.  She was so nice and told me that they had zofran right there and that she'd just get the anesthesiologist to approve it and they could give it to her right away.  I was glad that it worked out that way because it was only 7AM and Kayla told me that she was starting to feel sick.  So, we got zofran in her through her port and she decided that she was tired (I can't imagine why, ha ha)  and lay down on the bed to rest.  The MRI wouldn't start until 8AM, so we had an hour to wait.  I talked to the nurse quite a bit.  She was so nice and interested in Kayla's condition and how everything came about.  I told her that it would be VERY good if I were there when Kayla woke up from the anesthesia and she told me that she would be sure to work that out.  


Kayla fell asleep for most of the conversation. . . 

Kayla also got an anti-anxiety drug to help her be calm for going into the MRI.  When it was time to go, she insisted on walking, even though the nurse anesthetist said she probably wouldn't be able to with the medication.  But, no, she walked only holding my hand.  When we got to the door of the MRI room, I couldn't go in.  I was a little nervous about how she would handle that.  But, she did fine.  She refused to hold anyone's hand and walked alone to the bed in the room.  The nurse anesthetist put her up on the bed and got her all settled with her pillow pet and blanket.  She lay down and pushed the mask away when he tried to put it on to gas her to sleep.  I told them several times already to please use the port, she doesn't like masks.  So, he gave her the sedation through her port.  She was out pretty quickly.  This experience was completely different from her last MRI. . . she did awesome.


I then went down to the surgery waiting room (which I am getting pretty used to) until Kayla was done.  They came and got me about 20 minutes before she went into the recovery room so I could be there when she got there and when she woke up (yes, I really liked that nurse who arranged everything).  They wheeled her in on the bed and she slept for several more minutes until she woke up.  Kayla was very calm and did great waking up.  After a little while, she sat on the chair with me and ate a Popsicle and watched some cartoons until they de-accessed her port and we left.  


One thing that I wasn't too excited about was after I told the anesthesiologist that she was nauseous he decided to put a breathing tube in her during the MRI in case she threw up.  I knew she'd be fine once she god the zofran and I knew that a breathing tube was probably going to give her a sore throat, cough, and may result in the same kind of night we had after her dental surgery when she woke up at 2:30AM with a fever, cough and sore throat and we were debating whether or not to take her to the ER.  I will be praying hard for a good night tonight!  I really could use some sleep! 


For the rest of today, Kayla has been great.  She didn't even want to lie down and rest all afternoon.  We went with my mom out to the orchard so she could get some cherries to take home and then Bryson took all the kids on some errands so I could have a little quiet time.  Kayla kept up with it all and was normal and energetic tonight before bed.  


Now, we get to have a weekend before we start another crazy week next week!  Lots of doctors appointments. . .  

July 5th - Week 16

Kayla was scheduled to go in for her MRI on Friday morning, the 6th of July and then go right over to the clinic afterwards for her chemo.  But, on Tuesday, I got a call from the clinic asking if we would mind changing our appointment.  Dr. Hanson really wanted to see Kayla since he hasn't seen her since our very first visit to the clinic.  They had worked it out with his schedule to fit us in on Thursday instead of Friday.  So, we decided to do that.

We went in on Thursday morning and did the usual thing (oh, and my mom came to town which was SUPER helpful).  It was so nice to meet with Dr. Hanson.  I like and trust his opinions and preferences about different things concerning Kayla's treatment.  He is on the conservative side of everything, so he does not like to take any unnecessary risks.  He told us that we have chicken for a doctor. :)  But, I would rather her have a chicken for a doctor than risk taker.

I asked Dr. Hanson about the wart on Kayla's foot and told him that Marnie told us to go to a dermatologist and have it removed.  His opinion was to just leave it be and let it go away on its own.  That sounded good to me because it is one less appointment that we will have to go to!  Dr. Hanson also wanted to get rid of the steroid because of the long term side affects it has.  So, since I was able to get Kayla to take zofran at home last week (hallelujah!) he cut the steroid out completely and we are done with it.  Yay!

I also asked him about cutting out fluids.   Marnie said that they usually cut out fluids after the first month of treatment, but they hadn't cut any of Kayla's out because of the nausea and because she wouldn't take zofran orally at home.  The fluids are partly to help with nausea and partly to protect her kidneys.  Dr. Hanson's feelings on that were the fluids aren't hurting anything, so he doesn't really see a need to cut them out, it would be just for convenience in having a shorter visit.  But, he also said that we won't know if her kidneys will do okay with less fluids until we cut out fluids and she starts to have damage done to her kidneys.  So, in that way, he likes to err on the side of caution.

I was glad to hear all of these things that he feels because it gives me more of a knowledge base of where and what I want Kayla to be doing.  If we are meeting with a different doctor with different opinions, like wanting to cut out a bunch of fluids or add in unnecessary medication, I want to be able to tell him or her what I would like to stick to what Dr. Hanson recommends (now that I know what it is).

So, her counts were good enough to do her fourth treatment in the maintenance phase.  The next two weeks will be off weeks.  We will go in next Thursday for a blood count check.  If her counts are on the rise, then we won't have to come in the next week (whoa, what am I going to do?)  we will just come back the week after to start her second cycle of 4 on 2 off weeks of chemo in the maintenance phase.

For the rest of the day, we colored, and colored, and colored some more.  We ate lunch, watched  a little bit of Snow White, colored outside on the patio, colored inside, took a little walk around the halls, and then she played a little with some stamps and Play Doh.

We left before her second dose of zofran (because we'd have to wait another hour or more).  We were still there from 10AM until about 3:30PM- not including travel time (which is about 40 minutes each way).  It was a long day.  

June 28th - Week 15

I have to say I was somewhat looking forward to this week's treatment (well, last week's. . . I am a little late in posting about it).  I was excited to share with the nurses that I was able to get Kayla to take zofran and I was ready to start cutting some stuff out.  

On Wednesday, I got the normal reminder call about Kayla's appointment.  The one thing I was a little unsure about is that we were going to see another different doctor that we hadn't seen since she was in the hospital.  I just didn't know what this doctor would do or think or suggest.  They are all so different.  

About a half hour after my reminder call, I got another call telling me that they were going to have to change Kayla's appointment time and doctor.  So, we were going in a half hour later (totally fine with me) and we were going to see Marnie (the nurse practioner).  I was really glad about that change!  Especially since I had talked to her last week about trying to get Kayla to take zofran and then starting to cut out the steroid and extra fluids.  

So, Thursday morning, we did our usual thing and got to the clinic at 9:30AM.  Kayla insists on parking on the lowest level of the parking garage each week so we can walk up the stairs. . . which is fine. .  . but I am getting more and more pregnant each week . . . 

Anyway, we got there and had no problem accessing her port.  Usually, they have at least one extra person in the room besides the nurse who accesses her, to distract her with bubbles or books while they stick the needle in.  But, that day no one else was there and she still did great.  Each week she gets a token to get a prize from the treasure tower.  We are getting quite the collection of little bracelets. :)  

Another side note, Kayla's appetite that past week was huge!  She was eating twice as much breakfast, lunch and dinner and always hungry.  One of the side effects of the chemo is supposed to be a loss of appetite.  I am glad we haven't seen any of that.  When Kayla's vitals were taken, I asked the nurse how her weight was.  She gained a whole pound that week!  Everyone seems to think she is looking thinner, but I think she is just going through a growing up and thinning out phase.

So, when we met with Marnie, I told her of our success with zofran (in code, of course, I don't want Kayla to know just yet what I am doing).  Marnie told me that she would cut the dose of steroid in half this week and then next week she would cut it out completely.  Yay!  After that, they will start to cut out some of the extra fluids (that could be 2 hours or more cut off of our weekly visit!).  

Kayla's blood counts were good, so we went ahead with the treatment.  In the chemo suite, she had fun playing and making music with Miss Stephanie.  I think that is her favorite part of each week.  

There was a special treat this week.  There were two little miniature ponies outside between the hospital and clinic for the kids to go and see.  I felt really bad that we didn't bring Lily because she is REALLY into ponies right now.  She has read a whole bunch of the Pony Pals books lately and loves them.  (In fact, later when we got home and I told her about it, she teared up and was so sad that she missed it!)

Kayla isn't into animals much, so I couldn't get her to be in the picture, but look at those little pink shoes!  This pony wasn't any bigger than a large dog.    

Here is the other pony.  He was bigger.  Just a little. . .

For the rest of the time at the clinic we did coloring activities, ate lunch, practiced writing letters, and watched movies.  When we were all done, the nurse asked me if we wanted the second dose of zofran.  Kayla wouldn't be able to get it for another hour.  I was pretty confident that I could get her to take it at home, so we left!  

When we got home, I poured everyone a little cup of root beer and put zofran in Kayla's.  She drank it no problem.  Yay!  On Friday morning, she was fine until about 8 or 9AM and then came and told me she felt like she was going to throw up.  I asked her if she wanted some orange juice and she readily agreed. :)  I put some zofran in that and after the first sip she told me that she was already feeling better. :)  She drank the whole thing no problem.  

Two more things I forgot to mention.  One is that Kayla has this little wart on the bottom of her 4th toe.  I keep forgetting to show Marnie, or whatever doctor we were seeing until this week.  Marnie told me that she needs to have it taken off because it will spread quickly and become painful.  So, I need to make an appointment with a dermatologist soon (what's one more doctor's appointment anyway. . . ugh).  

Second, Kayla is due for another MRI.  She will be having one every three months.  The hospital had already scheduled it and I found out about it when we were scheduling the next week's treatment.  So, what we will do (this week, since it is Monday now) is go in for her MRI on Friday morning --we have to be at the hospital at 6:45AM--and after she is done with that we will go straight to the clinic for her treatment.  That is going to be a LONG day.  They will put her under for the MRI, so I am sure that she will be pretty tired for her chemo.  I think I will need a nap, too!  At least it is only one trip over to Boise.