November 26th - Our LAST Week 31!

So, as you can see from the title of this post, Kayla made her counts!  Whoohoo!  When we met with Dr. Hansen, the nurse came in and showed me the printout of her counts.  Kayla's neutrophils were at 1000.  Exactly what they needed to be to start the next cycle of chemo.  Yay!!!  Dr. Hansen also told me that Kayla's bone marrow test came back normal.  Yay!!!  It was a good visit, although, he also said that since she had such a long delay, she will probably have more.  Sigh.  We are just barely halfway through.

There was no school, so Lily wanted to come with us.  She and Kayla had lots of fun coloring, watching movies, eating lunch, and playing with stuff they brought along for the day.  Sadie was an angel and slept all afternoon.  And, we met a new friend who played Sequence Junior with us several times.  It was a very good day!  

Here is a picture of the girls all snuggled up in the bed with their warm blankets from the "oven."  

It did take about 20 minutes of coaxing to get Kayla to take zofran that night after dinner.  She finally took it when I told her she could take a bath with Sadie. :)

Kayla woke up at about 4:30AM and ran into our bathroom to throw up.  This is the part I had not missed during all of our weeks off.  She wasn't quite as reasonable that time when I tried to get her to take another zofran.  I think I have lost a little compassion when it comes to that, or maybe I was just tired, but I was not going to sit on the bathroom floor for the rest of the night trying to get her to take it.  I put it in her mouth and held it until it had mostly dissolved.  She was so mad and worked up that she threw up again!  Ugh.  So, I wasn't sure if any of the Zofran got in her or not, but I went ahead and let her go back to bed.

Well, a half hour later, she came running in again to throw up.  I got another Zofran pill.  After a few minutes of coaxing, I just put it in her mouth and stuck her sippy cup of water in her mouth and told her to drink until it was gone.  She was mad, but didn't throw up, and went back to bed.  Halleluja.  Right as I got her back in bed, Sadie woke up, so I fed her.  After I was done feeding her, Benson started crying.  So, I went to get him, hoping to rock him for a few minutes and convince him to go back to sleep.  But then, Nathan got up (it was about 6AM now) and when Benson saw him up, there was no getting back to sleep.  I guess that's all the sleep I was going to get.  So, there's the life of a mom for ya!  ;)

Kayla felt kind of sick all day, although she didn't throw up again.  I'm afraid that her body is wearing down a bit and the effects of the chemo are lasting longer and longer.  She has been doing better since then, but it is definitely taking longer for her to bounce back to normal after a treatment.  We just keep praying for her.  Thanks for all of your prayers.

November 20th - Week 31, Again, and Bone Marrow Test

Tuesday, the 20th, was not like our normal clinic day.  Nathan and Lily were up getting ready for school while I was getting ready for the day.  Then I heard Kayla get up and go downstairs.  A few minutes later, I remembered that Kayla couldn't eat anything (if she had to do the bone marrow test, she'd have to be put to sleep) and rushed downstairs to make sure she hadn't started eating her normal bowl of cereal.  Nathan and Lily were eating breakfast, but Kayla was just lying on the floor watching cartoons.  She had remembered that she couldn't eat or drink anything that day.  Wow.  That was the first time she amazed me that day.

After Nathan and Lily got on the bus, I got Kayla, Benson and Sadie ready to go and we headed out the door to Winco.  Lily's class was celebrating the November birthdays that afternoon and she was the only one with a birthday in November (which meant that we were the only ones bringing treats--which have to be store bought).  After grabbing some sugar cookies and drinks I piled the kids back into the car and headed to the school (which is out in the boonies. . .the other direction).

We got to the school and took the treats in to Lily's class.  I didn't know if we'd make it back in time for the party. . . it all depended on Kayla's counts.  If they were up and we did regular chemo, it would be a long day and we'd miss the party.  If she had to get the bone marrow test, then we'd probably be done and back in time for the party.  Each option had its pluses and minuses.

Then, I piled the kids back into the car and we headed home for about one minute.  I ran inside and grabbed our stuff for the day.  I had to be prepared for a full day of chemo--which means food and activities to keep us busy for about 6 hours.  We then dropped off Benson at a friend's house and headed to Boise.

All this time, Kayla did not ask for any food or drink.  She never even complained that she was hungry or thirsty.  I was totally amazed.  I had told her ahead of time what we'd be doing and she was completely comfortable with not eating, and going over to the hospital if we needed to do the procedure.  That girl has come A LONG WAY. :)

At the clinic, Kayla got accessed and we waited for a little while for the blood counts to come back.  They were down, neutrophils were only 530--down even further from the last week.  Ugh.  They need to be 1000 to do a chemo treatment.  So, we walked over to the Pediatric Intensive Care Unit.  It was the first time we'd been back there since Kayla's original admittance.  That felt kind of weird.

The doctor came in and talked to me beforehand.  I asked him what we would learn from this procedure or how it would help.  He asked me if I was the kind of person who wanted a little information or a lot of information.  I said a lot.  So, he told me that the worst case scenario (which he had never seen before), the marrow changes as a result of the chemotherapy and is kind of leukemic or cancer-like (or something like that).  In most cases, they just look at the marrow and can see that it is still working fine, but the neutrophils are low.  They do the procedure just to rule out the worst case possibilities before they move on.  Alrighty.

Another man (his ID tag said "Medical Staff" so I'm not sure exactly what he was. . . and the photo on his tag was a picture of Sleeping Beauty)  came in and talked to us.  He was very kid friendly and talked to Kayla a bit and asked me questions about how she does with anesthesia.  Luckily, she has had no problems with it.

When it was time to start (by the way, Sadie had slept the entire morning of running around and was just now waking up.  What a great baby!), Kayla let the nurses help her onto the bed while the man with the Sleeping Beauty tag (I guess he was the nurses anesthetist)  gave her the anesthetic through her port.  The doctor told me I could just sit and watch. . . which I wasn't planning on doing, but I decided to anyway.  So, I had a clear view of the doctor cleaning an area on her lower back, numbing the site, sticking a huge needle thing in with a handle crank thing on the end (it kind of resembled a hose bib handle).  He stuck a smaller needle inside the big one and drew the marrow out into a syringe.  Then he used the handle crank thing to push around (I was glad she was asleep. . . he was putting a lot or pressure on that thing) and get a small sample of her pelvic bone.  I asked him how big the bone sample would be and he told me that it is about the size of the tip of a pencil lead.  When he was done, he removed the huge needle thing and bandaged up the hole.

The whole procedure took about 5 minutes.  Then I just waited for Kayla to wake up.  About a half hour later, she just sat up and said, "I want a cookie."  Okey-dokie!  So, I checked with the nurse to make sure it was alright if I gave her something and then got her a water bottle and a cookie.  We watched a little PBS and then the nurse came in, de-accessed her port and said we could leave.

It ended up being perfect timing to leave the hospital and drive straight out to the school.  We got there just in time for the birthday party. :)  So, I helped make tootsie pop turkeys and then we came home.

And that was our day.  Whew.

Kayla did great all afternoon, but by the evening she was starting to get sore.  The doctor told me she could take Tylenol (yeah, right, like she'd actually take it, ha ha) for the pain, but that it shouldn't be too bad.  By the time Kayla went to bed she was walking very slowly because she was in a decent amount of pain.  I helped her into bed.  She asked me if I would help her get out of bed in the morning if she was still sore.  What a sweet, brave, strong girl.  I am so proud of how well she did that day.  She was constantly amazing me.  She has come a long way. . .

November 14th - Week 31: Take 5

I am going to make this post short and sweet.  Pretty much like the visit was.  We left at 7:30AM, went to the clinic (getting stuck in awful traffic on the way), Kayla got accessed, checked vitals, and we met with the Dr. Meeker.

Kayla's neutrophil count was still too low for chemo - for the fifth week in a row.  Last week, her neutrophils (they fight germs and infections)  were at 500.  They need to be at 1000.  This week they were at 570.  But, platelets were still good. :)  So, we went home.  

A nurse from the clinic called me on Friday and told me that Dr. Hansen wanted to do a bone marrow procedure on Kayla to check and see if something else is affecting her blood from recovering.  So, after juggling some things, including rescheduling an appointment with Dr. Lee, the ophthalmologist, we will go in on Tuesday this next week.  We'll go to the clinic at 10:30AM and they will check her blood, again.  If it is good, they will give Kayla her regular chemo treatment.  If not, we will go over to the hospital and she will get put to sleep while Dr. Hanson takes a small sample of her pelvic bone and marrow.  

Kayla won't be able to eat or drink anything before hand, which will stink because the procedure isn't scheduled until 11:30AM.  That will not be a pleasant morning.  Anyway, I'll keep you updated. :)    

The Closing of a Short Chapter

I made it.  Today was our ward's Primary Program.  I knew that it would be great and that even if there was some huge mess up, it would be great because no matter what happens during a primary program, it is always great. :)  But, I was still feeling a lot of anxiety last night and this morning.

The program was absolutely fantastic!  I love our 150+ primary children!  They said their parts perfectly and sang beautifully and besides a couple minor issues, everything went very smoothly.  When all of those children are singing songs about our Savior and following the commandments it is impossible not to feel the Spirit.  

Another big thing happened today. . . I was released as Primary President.  My amazing counselors and secretary were also released.  The bishop actually talked to me three weeks ago about the release.  Luckily, I was able to convince him to let us stay in until after the program. ;)  So, I had time to cry about it and let it all sink in before today.  But, it was still hard.  I  was honestly just starting to get on top of everything and feel like I could handle it.  After all, I had only been in since Christmas of last year.  But after these past couple of absolutely crazy weeks, I think Heavenly Father was trying to tell me that it is okay to be released and I that I do need a break.  I no longer have the stress in the back of my mind of everything that I should be doing but just can't get done (relating to primary. . .other things are still fair game).  :)  

I am grateful for all that my counselors and secretary did to support me and take so much of the burden from me during these difficult past months.  There's no way I could have lasted as long as I did without them.  I love our primary children and have learned so much from this past year.  This calling has been a great experience for me, and I have learned so much.  I am grateful for the opportunity I had to serve.

Kayla is always asking if she can carry Sadie and loves to give her hugs 

and kisses.  She is such a great little mother. 

And just another note, so far Kayla has been great this week with no sickness.  Hopefully, those neutrophils are building themselves back up again.  Sadie is sleeping amazingly, even at night.  I feel a lot better when I get a normal amount of sleep.  Benson is potty training. . . it was not on my list of things to do right now, but he will not keep a diaper on.  He is doing great at it, though, so I am looking forward to only having one in diapers, again.  Nathan and Lily had fabulous parent/teacher conferences.  They are both so smart and well-behaved at school.  I am so happy for their successes there and appreciate all that their teachers do.  Bryson's work has been keeping him busy lately - I am grateful for all that he does to provide for us.  He is the best husband and father!

November 7th - Week 31 and holding. . .

For once we were a little early on our trip to the clinic today - which turned out perfect because right before we got there, I realized I had forgotten a bottle for Sadie. . . so we made a quick stop at WinCo.  At the clinic, Kayla got checked in and accessed, and we met with Marnie.

The next cycle of chemo treatment has been delayed the last few weeks because Kayla's platelet count has been too low.  Well, when the blood counts came back, the platelets were up to 178!  Hooray!  That was a huge jump.

But, her neutrophil count had plummeted to 500.  Neutrophils are the part of your blood that fight off germs and infection.  Kayla's need to be at 1000 in order to do chemo.  So, we are delayed. . . AGAIN.  This is our fourth week in a row.  I guess her body just needs a break.

The scary thing about having her neutrophil count so low is that any kind of infection can come on super fast, and then she'll have to be admitted into the hospital.  Marnie told me that if she gets a fever of 101, or even if she just looks sick and my "mommy radar" is going off, I need to call them and bring Kayla in.  So, just  another little stress in the back of my mind.

Just a little update on other stuff.  Lily's birthday was on Friday, and my parents and sister (and her boyfriend) came to visit for the weekend.  I put them to work on Saturday helping me can my 300 pounds of apples.  We got 80 quarts of applesauce done, but I still have a few more buckets in my garage to get done.

On Sunday, we blessed our sweet little Sadie.  It was a beautiful blessing and we just love her to pieces!

On Monday, which was my birthday, we went to the allergy doctor for Benson (in Meridian. . . 25 minutes away).  He previously got a blood test done at the pediatrician that showed he has multiple food allergies, so his doctor referred us to the allergy clinic.  It was a super long and tiring afternoon there with three kids, Benson screaming each time the doctor came in to tell me very important information (mainly because there was a glass jar full of Dum Dums on the counter.  Why in plain sight?  I don't know, but it caused huge problems for him).  The nurse did the lovely prick test all over his back, which didn't sit well with him either.  In the end we found out that he is allergic to peanuts (and all tree nuts), eggs, milk, wheat, soybeans, cats, and dust mites.  I learned how to use an epipen and we now have to have one for Benson at all times, they gave me another breathing thing that I think I know how to use (picture screaming Benson during instruction).  The doctor told me that Benson needed another blood test (which requires a trip to the hospital for lab work), and he also wanted to do another test on Benson's peanut allergy, to find out how serious it is.  In the end, he told me to keep peanuts and eggs away from Benson, but the rest are okay.  They just cause eczema, which is a pain, but easier to deal with than no wheat or milk.

After getting home from that, I was so exhausted, so tired of cake, and had 5 (well, 4, Sadie is a sweetheart) cranky kids that I just wanted to feed and get to bed.  Bryson and I were able to get them all to sleep by 8pm (sorry, we didn't even have family night) and I went and TOOK A BATH.  A good friend made me a nice bath salt recipe and I decided to try it out.  It was a nice end to a crazy day. . week. . . 6 months?  Plus, Bryson and I watched an episode of Psych.  :)

Tuesday, Kayla had a dentist appointment with the dentist who did her surgery back in May.  It was all the way in Boise, and I knew that they couldn't do anything like clean her teeth.  So, it was just going to be a visit where they take pictures (if she'd let them) and the dentist would look in her mouth.  Is that worth another 30 minute trip with kids?  I was not looking forward to it.  If you can't tell, I have not been looking forward to this whole week. ;)  It all ended up working out okay.  The dental assistant ( who looked maybe 18?)  was a little thrown off by Kayla's situation and my instructions that she couldn't get her teeth cleaned (because of her port, she's needs antibiotics in order to have any dental work done) and kept saying he'd check with the doctor.  Kayla did let him take pictures of her teeth (wow).  It helped that she could sit on my lap because I am no longer pregnant.   The dentist was really nice (it wasn't the one who did her surgery) and seemed to be very knowledgeable, even though he didn't look old enough to be out of dental school yet.  He looked at her teeth and everything was good.

That afternoon I spent some time getting things ready for our church primary program which is this Sunday (150  kids in our primary!).  And I also made it over to the polls to vote!

Today, after we got home from the clinic (early), I figured it would be the best time to get Benson's blood work done, so we went over to the hospital (luckily we could go to the new St. Luke's in Nampa - not so far away) and did that.  He was great until the nurse tied that rubber strip on his arm to get his vein ready.  When she stuck the needle, she had to move it around quite a bit to get his vein.  Poor guy!  It looked (and from his crying - sounded) very painful.  It was quick though, and then we went home.

I squeezed in about 5 minutes of rest on the couch where I had time to stop and realize that I felt like a zombie.  Then Nathan and Lily got home from school and I took them to their dentist appointments - no cavities, Yay!

Sorry for the long and a little bit venting post.  I feel so tired and ready for any kind of break right now.  Having the kids off from school for the rest of the week and parent teacher conferences and trying to squeeze in a meeting with my primary leaders to make sure we are all prepared for our primary program on Sunday isn't exactly a break, but by the end of next week it looks hopeful.  :)  Thanks for your prayers. . .

October 31st - Still week 31 + Amazing News

Yes, we went to the clinic on Halloween!  Last week the nurses told us about all the fun stuff that they do, so I decided that it would be okay to do chemo on Halloween.

Well, Kayla decided to be a princess for Halloween, so she wore her costume and brought her plastic pumpkin for trick or treating.  Most of the nurses and staff were dressed up and had a bowl of candy by their station, so as Kayla got checked in and accessed, she was able to trick or treat along the way.  Unfortunately, I didn't get any pictures. . . I was busy carrying around an infant car seat, diaper bag, and bag of stuff to keep us busy all day, etc.

We went in to talk to Marnie and have the usual check-up.  Marnie was optimistic that Kayla would make her blood counts that day and be able to have her chemo. . .but when the numbers came back her platelets were at 86.  Sigh.  I was happy that her platelets had come up so far from last week (58).  They need to be 100, so I think she'll be good for next week.  Marnie did tell me that she'd talk to Dr. Hansen about how long we just wait for her counts to go up or if he would want to start a lower dose of chemo.  She called me back later that day and told me that Dr. Hansen wanted to wait until her platelets were up to 100 and do the full dose of chemo.

Marnie also told me about the Brain Tumor Conference that went on last week.  She started out telling me that at this particular conference, everyone who was supposed to be there was there (. . . except for Dr. Hansen, who was on vacation), where normally not everyone makes it.   There were oncologists, neurologists, radio-neurologists, ophthalmologists, probably other types of doctors, nurses, school teachers, the music therapist, and just about everyone who can possibly help out with every situation that someone with a brain tumor might need.

So, this group of highly trained professionals spend time talking about each case.  They looked at Kayla's MRI and spent a lot of time discussing her condition.  What they found from the MRI is that her tumor has shrunk so much that it is almost GONE.  Her optic chiasim, where the main mass of the tumor is, is "nearly normal."  Kayla the small spots or tumors along her entire optic nerves, which is what caused the doctors to think she has neurofibromatosis, are COMPLETELY GONE.

Optic gliomas typically do not change in size very quickly.  We have been told many times not to expect to see any change in size until we are comparing MRIs from a year to a year and a half apart.  So far, it's been 6 months and both MRIs have shown a decrease in size that is very noticeable.  Especially this last one where the tumor is almost gone.  The group at the conference could not come up with any real explanation.  They talked about a possible mis-diagnosis and that it might be something else.  But, no one could think of anything else that it could possibly be.  The only suggestion came from the radio-neurologist: "the treatment is working."

I can think of a few other explanations. . . back at the beginning of this whole experience, our bishop gave Bryson and I each a blessing.  He told us that we would see miracles throughout this journey.  We totally have.  I know that the many many prayers you all have said in our behalf have been heard.  THANK YOU!!  I am very anxious to see what the next 6 months have in store for us.      

P.S.
We also celebrated Kayla's 5th birthday on the 30th!  Happy Birthday sweet girl!!