Back to School

This week has been a big improvement as far as how Kera's been feeling.  Each day she has gotten better and better.  I think the fact that she has only 7 more treatments to go helps.  We are all getting anxious for the treatments and daily trips to Salt Lake to be over.  Kera's nausea has been the biggest problem, and lately we are seeing her feel more normal.  There is still a little bit of an issue with her eating.  She is very particular about what she will eat, and certain foods do not agree with her.  But for the most part she has been feeling good and not having too much nausea.  At our appointment with the oncologist Friday we talked about trying to decrease the steroid pill back to 1mg.  We tapered it down last Friday, but then she was feeling so sick and throwing up all weekend, that we went back up to the 2mg because the steroid helps with nausea.  It's been two days of 1mg pills and she is still feeling good.  I am giving her a nausea/anxiety pill called Atevan that she takes along with the Zofran, and that's working well.
Now that we have gotten her nausea under control and her right eye has improved, she is feeling less self conscious.  She even went back to church today!!  She stayed for all three meetings.  She was excited to be back in primary, and I know her friends and leaders were glad to see her there, and I was so happy to have her at church with us.  Kera also decided last week when we were doing back to school shopping and after they found out who their teachers would be that she wanted to be there for the first day of school.  That's what she said at first, that she wanted to be there for the first day, but now she says she wants to be there every day.  We will still have to leave at 11:15 every day to do her treatment, but she is wanting to be at school, and she was concerned about the things she would be missing when she leaves early.  Luckily it's the first week of school, and she only has this week and two days next week that she will be missing.
I'm glad that she wants to be back in school and return to a normal schedule, but I'm also a little bit sad.  I will miss having her at home with me each day, and I was kind of looking forward to home schooling her.  I know that it could still be an option if going to school every day gets to be too much for her, but I'm glad that she's feeling well enough to be at school.  That's such a good sign.  She is really doing very well, with very few symptoms at all.  It is my constant prayer that she will continue on this path for as long as possible.  We will return in a few weeks to do a diagnostic MRI, and they say that we should see a difference in the size of the tumor, but more importantly it's the not showing increased symptoms that will tell us how she's doing, more than the results of the scan.  We could still see a tumor on the scan, but as long as she is doing well with few symptoms, then we know it is working and that the radiation has helped.  Of course I hope we go in there and there is nothing there at all.  :)
We had our back to school night last Thursday, and at first Kera wanted to come with me.  The boys were spending the night down at my parents house in Riverton so Jacob didn't go.  Dave's sister Carrie came up to visit and they went to get frozen yogurt, so I went alone to the school.  I was glad I did because after meeting Jacob's teacher I went to Kera's classroom and met her teachers.  She has two teachers this year, and I was very impressed with both of them.  I had to explain to them about Kera's condition, and reality hit me hard and I broke down crying.  It was hard to be there seeing her little desk and the papers to hand out, the normal things that you would expect on back to school night, but now things are not normal, and I don't know what the year will bring.  So I got very emotional as I explained about Kera's diagnosis.  Her teachers were very helpful though and one of them actually helped write the online curriculum for 3rd grade last year, so we can easily transition to online schooling if we need to do so.  Just another one of the tender mercies that I am so thankful for.  :)  I'm also glad that she has two sweet girls from Kera's primary class in her school class with her.  I feel good about her starting school, and I feel very positive right now about everything.  It's a good day. :) :)

Mountains to Climb

I have seen this video a few times, and the first time I watched it was at church during a young womens lesson.  Soon after we received the news about Kera, the missionaries in our area came by our home for a visit, and they showed us this mormon messages video.  It sure meant a whole lot more to me now.  I like watching it as it reminds me of how we can face trials in our life and how we can put them into perspective.  I know that this adversity, no matter how painful and difficult it may be, can strengthen me and refine me more than I even thought possible.  I have felt and continue to feel Heavenly Father's loves me and I know he will send me the comfort of the Holy Spirit when I feel like I can no longer endure.


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Over half way done!!

Thursday August 15, 2013

I am happy to report that after today we only have 13 treatments left to go!!  We are more than halfway done, and we are all so relieved that the end is in sight!  The treatment dosage right now is the strongest and at the highest level right now, and we want it to be so strong that it kills that ugly tumor and it never dares to come back.  On the negative side, because the radiation is at the highest level, Kera has been extra tired and worn out this week.  She has also had an increase in her nausea, which we hope will not last for too long.  Last Friday Kera visited some friends from Kaysville and was even feeling well enough to stay and have a late movie night to celebrate it being Friday, no treatment for two days. She did really well and they had a lot of fun, but when Dave and I picked her up on our way back from the temple, I could tell she was pretty tired.  We got her in the car and not a minute later we had to pull over so she could run outside and vomit.  Sorry to the person's house that had an unfortunate gift waiting for them on their front lawn.  It wasn't anyone from our old ward, so at least we didn't know them! :)  She probably just overdid it a bit or whatever she ate didn't sit well.  She threw up a few more times the next morning, and she rested a lot on Saturday before going to my grandparents annual summer BBQ where she got to see a lot of her cousins and family.  Sunday she was exhausted from two late nights in a row, so she stayed home from church and rested most of the day.
Monday was an emotional day for me.  I don't know what it is about Mondays, but they are always hard days!  Maybe it's hard getting back into the daily routine of driving to Salt Lake every day and having to drag Kera up off the couch to go to treatments.  During her treatment that day I asked the nurse about Kera's hair.  When I brush her hair, lots of it has been coming out.  The nurse told me to expect it to be patchy, and that she may lose some on top where the radiation enters the head and in the back where it exits.  The doctor told me that I should expect some hair loss in the back by her neck and that it should be covered up by her hair mostly, but not that she would lose hair in front.  She told me that I should probably go get a hait that she can wear when she goes out.  I just wasn't expecting that.  I thought you only lost your hair when you went through chemo.  But I should've known I guess.  Radiation is very taxing on the body, and wherever it touches can cause the hair to fall out.  So far no really noticeable patches, and I'm crossing my fingers that it stays that way.  She won't lose all of it, and whatever she loses should grow back quickly and luckily she has a lot of hair, thanks mom :) I asked Kera if she wanted to go pick out a hat, and she said she doesn't want one.  Hopefully it won't be necessary.  On the positive note, since we have tapered down on the steroids she has lost 5 pounds!!
Along with the hair thing, she has also been feeling more nausea, and is more irritable when she doesn't feel good.  Tuesday she didn't feel up to much either.  We did shop at Costco after treatment that day which is always a good sign. :)  At the BBQ Saturday we made plans with my sister in law to have a sleepover with her cousin this week before she goes back to school next week.  We weren't sure if Kera would be up for it since Monday and Tuesday were pretty rough days.  Tuesday night Dave gave her a blessing, and Wednesday morning she still woke up feeling kind of nauseated, but she really wanted to go.  She got all of her stuff packed and we set off for treatment, and my sister in law was going to meet us at the hospital.  Right after her treatment while we were waiting for them to get there, she threw up.  I really wasn't sure about it after that. But Kera said she felt better and still wanted to go.  So they met us and off she went.  I went to the temple right after I dropped her off, and while I was there I prayed that she would do well at her cousin's house and that she would have fun and feel good.  I got a text later from my sister in law saying that she was doing great, smiling and even a few giggles.  They had played some games, went outside on the swings, and ate some lunch.  I was so relieved and happy that she was having a good time. :)  That night I went to the youth activity.  I am the 1st counselor for the young women's group in our ward, and that was the first time that  I was able to attend mutual since the diagnosis.
Thursday morning my sis in law texted me that she was feeling some nausea, so when I got there to pick her up I expected her to be laying on the couch or something, but she was downstairs playing games with her cousin, and she said she was feeling good and she wanted to stay another night.  :)  Unfortunately we had to face reality and drive to Salt Lake for the treatment.  After treatment I told Michael I would spend some time with him doing something fun, since Dave took Jacob to Seven Peaks today for some one on one time.  He wanted to go to the Classic Fun Center and play the arcades.  Kera wanted to come too, and I told Michael it was his decision if he let her come or not.  He chose to let her come along.  ;) We had a fun time and won a few games.  We stopped at Walmart afterwards and I let them get a little treat.  Then home it was.
I'm glad Kera has been feeling better and was well enough to have the sleepover.  It's these little miracles that make life seem a little easier to deal with.
Oh, I also wanted to mention that there's a sweet lady who's son in law goes to the hospital for radiation and his appointments are right before Kera's.  They have been really nice to us and always ask how Kera's doing that day.  She brought a gift to Kera on Tuesday.  They gave her lots of fun things like a word search book, a notebook and colored pencils, a miniature dream light, a fashion designer activity book and a few other little things and a sweet card.  She also had another gift bag with a novel and activity book in it that she told Kera she could give to someone else that may be feeling down and needed some cheering up.  I thought it was so thoughtful of her.  So many friends and family have sent gifts or cards and things to cheer Kera up, and ward members have been bringing dinner over twice a week, which I am so grateful for, and I know Kera is too.  :)  Of course I am extremely grateful to my mother in law who has moved in with us and is helping to keep us sane and take care of the kids, our garden, our home projects, our meals, cleaning the house, our animals, and I could go on and on.  She is one of our biggest tender mercies right now, and I honestly can't imagine being able to get through this without her. :)

Pictures

August 11, 2013
Sunday-
I thought I would finally get around to downloading my pictures off my camera and post some on here, so this blog can be more than just my words, it can also be used as a kind of scrapbook.  Warning, uploading lots of pictures!!

Family Reunion 2013

All of the cousins in order by age

cousins Morgan and Grace loved riding

 on the tube and got flipped off several times:)

 View of tubing fun from inside the boat

 Jacob performed a magic act for our family talent show

Kera showing off her 1st place coloring contest drawing

 Ryder and his blankie

 cousin Sam was so patient with his little 4 year old cousins

All the kids having fun in the hot tub

Michael and grandpa eating smores

                                                                    Roasting smores

Kera enjoying her smore

 Girls only time in the hot tub

Michael and Ellen the dynamic duo

Fooseball time

Golden Corral

Kera trying to see how many desserts she can eat

The kids love Golden Corral 

Kera's tummy stuffer toy she got with her coloring contest gift card:)

4th of July city parade and carnival

 Jacob wanted to have his face painted with a batman mask, 

maybe he's not too happy with the results?

 Kera chose fireworks for her facepaint

Mom and Ryder at the parade

The whole gang waiting for the parade to start

Emotional Monday

The day after we got back home on Monday Kera of course had to go in for her treatment, and we also had to go to primary childrens for our weekly doctor appointment.  The doctor visit lasted quite awhile because we saw our normal physician, and then he also wanted to introduce us to the neurooncologist at primary's, Dr. Bruggers.  She was a very friendly doctor and also very informative.  She specializes in brain tumors, and could give us specific information about DIPG patients and what kinds of things some of the patients she's treated have tried.  We also talked a little bit about a new development in these kinds of brain tumors where they are taking biopsies of the tumor to find out more about the tumor itself.  Even though these gliomas or tumors are similar, some have proven to be more aggressive or high grade tumors, which are the faster growing kind.  Some tumors are low grade tumors and they are more slow growing.  I feel like it may be an option for us to look into these biopsies.  Unfortunately the board has not approved biopsies at primary childrens, but Dr. Bruggers and others are working to get it approved because they feel that it is being shown to be helpful in knowing how to treat the tumors and allowing them to treat each individual tumor when they have more information about what kind of tumor it is.  I know for right now that we are doing the best thing for her, which is the 6 week radiation, but I want to have all of my ducks in a row so to speak and Dave and I want to explore all options and be prepared.
So the doctor visit went fairly long.  I had a lot of questions, and Kera also went and met the child life specialist who helped her make a bead necklace.  Each bead represents some event or thing that relates to her illness, like an MRI, radiation, blood draw, cat scan, etc.  We also talked with  two nurses and social workers who we've met before who wanted to talk with Kera and see how she's been doing.  We talked with our doctor about Kera's current symptoms and things that have been bothering her lately.  Of course the weight gain was one, and her sleeplessness and hunger, as well as her eye tracking problem.  The first two are steroid side effects, but the eye problem is related to the tumor and I'm hoping that it starts to improve with more radiation.  It really bothers her.  It was very sad when we went in the restroom after we left the doctor's office and she started to cry.  I asked her what was wrong and she said her eye scares her.  She hates looking in the mirror and seeing her puffy cheeks and her eye being crossed and not looking like herself.  We were planning on getting family pictures taken by my cousin the following day, but after the day we had and with all of her emotions about her appearance, I called my cousin and had to cancel.  I am hoping that  after more radiation and after we finish the steroids (which we have been tapering down quite a bit and she should be off completely by late next week), she will look more like herself and we can get an updated family picture taken.  Our last one was two years ago when Ryder was just 7 months old.
Monday was a hard day for her.  Then yesterday she seemed to be in a better mood for the most part.  We had to drive further for our radiation treatment that day because the machines were down at LDS, but even though she was upset about having to drive further, she ended up being pretty positive about the whole thing, and even spent some time last night playing with her brothers and not being too irritable. :)
Kera woke up this morning with a stomachache.  It's always hard to know what's causing it.  It could be the pressure of the extra weight and having that full feeling, or maybe it could be from constipation because that's another side effect of the steroids, or it could just be the steroid itself.  Who knows! She didn't want to eat much at first, but she ended up eating two bowls of oatmeal for breakfast and she seemed to perk up after I gave her the zofran.  I decided not to give it to her yesterday since she hasn't been complaining about the nausea for awhile.  But maybe she still needs to be taking it.  So the morning started out difficult, and she was pretty moody and didn't want to go to treatment, but on the way there she said she didn't want to go back home and she said she wanted to go get pizza and go shopping.  How could I say no to that?  So we went to City Creek in Salt Lake after that and did some shopping. We picked out a few cute shirts and she bought a stuffed Pluto doll at the Disney Store with her own money.  She also got some sticker earrings and fake nails. I'm glad she is interested in those kinds of things now, a week or so ago she didn't have much interest in that stuff because she was too tired and sick.  She is also able to do more things.  Oh and I forgot to say that yesterday Jacob came up with the idea of going door to door selling corn from our garden to some neighbors, and while we were at the treatment he sold two dollars worth.  So Kera thought that sounded like an easy way to make money, and she wanted to go with Jacob that night to sell more.  I was a little worried about her walking around in the heat, because at 6 it was still pretty hot outside, but she said she wanted to do it, and she got her sunglasses on and a hat and some ice water, and they put some corn in the trailer and walked around the subdivision selling it.  They came back so excited because they made $12!! Our sweet neighbors bought all the corn they had.  They split the money, and that's where Kera got the money to buy her Pluto doll.  I think this is a great idea to teach the kids about work and seeing the results of their labors.  One of Jacob's main jobs, and Kera's before she got sick was to help care for the garden and weed it and water it three times a week.  So now they can sell the vegetables and pocket some extra cash.  :)
So today ended up being a good day for Kera, and she also spent some time tonight playing with Michael and Ryder and reading them books.  This is a good sign because with her eye like it's been she hasn't been up to doing much reading.  She also played the wii with Michael and has tried to be extra nice to her brothers.   Dave showed a video clip after dinner of the song "I'm Trying to Be Like Jesus" with Greg Olson pictures and other pictures of the Savior.  It really helped bring the spirit into our home.  Ryder sat there mesmerized watching the clip, as he usually is when music is playing.  Another big struggle in our home lately has been Michael and Jacob fighting constantly.  They are 6 years apart so you wouldn't think it would be such a problem, but it's proven to be one this summer.  Michael wants to play with Jacob and he is always trying to get his attention, but it's usually in a negative way, by bugging him or pushing his buttons and irritating him so that Jacob gets mad and yells at him.  They are just like oil and vinegar sometimes.  Michael was at a friend's house playing all day today, so the home felt a lot more peaceful with the two of them apart.  We are all trying to get them to try their best to get along and for Michael to not cross the line with Jacob.  It's a process, and one that challenges me every day.
I'm so glad we are seeing improvements with Kera, and I cannot wait until she is no longer taking the steroids or having to go for radiation!!

Here I am!

I have been absent from blogging for quite a few days, I apologize.  I was trying to remember when I wrote my last post, and it has been over a week!  We left for our family reunion last Wednesday.  I was a little worried about the 7 hour drive up to our reunion spot in Idaho, but luckily we met up with my parents and they drove Kera up there in their car so that she wouldn't be bothered by our three rowdy boys in a confined vehicle for that long.  That was a blessing because it would have made for a really long drive.  Those 15 minutes that they were all together before we met up with my parents seemed like forever!  With Kera being so hot and irritable, everything the boys said or did bothered her.
We made it to our cabin around 7 pm Wednesday night.  The cabin was great, it had an air hockey table and fooseball table for the kids along with a wii upstairs and a hot tub and  fire pit in the backyard.  We roasted marshmallows that night, and the weather was pleasant if not a little cool while we were there, so it was a good break from the heat for Kera.  We had a lot of fun catching up with my brother's family who lives in Oregon who we only get to see once a year.  Kera has a cousin, Mary, who is her age and they have a lot of fun together.  Kera did her best to participate in most activities, but she also took a lot of naps and needed to rest quite a bit.  One of the biggest challenges was the sleeping situation.  There were only 5 bedrooms, and the kids all had a big room upstairs with two sets of bunkbeds and a queen sized bed.  There was a tv room next door to it with a couch and pullout bed, but those were the only options of places to sleep, and Kera really wanted her own room and her own space when it was time to go to bed.  One night she had a hard time falling asleep and at 3 am she came downstairs to my bedroom and woke me up saying that she couldn't sleep.  The poor thing was awake for hours and couldn't sleep, another side effect of the steroids.  That and the weight gain have been the two biggest problems we've had with the steroid pills.  The poor thing has gained 15 pounds in just over 2 weeks!!  That's about 20% of her total body weight!  She's been very self conscious about it lately.  Her little cheeks are so puffy, and her right eye has also been worse than normal.  It doesn't track like the other one, and she says it scares her when she sees herself in the mirror. :(
We rented a pontoon boat one day and took it out on Lake Payette.  The scenery up there is beautiful!!  It reminded me a lot of Lake Tahoe. Since it had been raining on and off the few days we were there, I wasn't sure about getting in the water, but it was surprisingly warmer than I thought it would be.  We rented a tube and had fun tubing on the lake.  Kera even wanted to try it, and she went on the tube once with her cousin Mary, and one time with me.  I loved seeing her smile.  :)  I even took Ryder on the tube and we drifted along so peacefully that he almost fell asleep out on the tube!  I also had to try to go alone one time so I could get my adrenaline going a little bit.  I was doing really good until I signaled to the driver (my husband) with a yawn as a challenge to make him go faster.  So that did it.  I would have stayed on except for a big wave that knocked the tube sideways and I flew off.  I'm sure Dave felt very proud of himself after that. :)
I have been using my video camera like crazy, and I had it with me on the boat, so I captured video of all of us riding on the tube.
We also spent a lot of time playing games and talking and catching up with one another.  My mom brought a bingo game with prizes, and Kera was very excited that she won bingo three times and got lots of prizes. I also introduced the game of bunco to everyone.  Kera's cousin Mary had all of the cousins come prepared to perform a talent at the talent show.  Jacob did a magic trick, Kera shared her 1st place award for a coloring contest she recently entered, winning her a $25 gift card.  She also painted some ceramic fish that she brought to show everyone.  Michael decided to bring his army men and show how he can play and win battles.  Ryder our little musician, demonstrated how he leads the music with his "ati" he calls it. He loves to grab a straw or a makeshift conductor's wand of some kind and lead the music.
The weekend flew by and before we knew it it was time to go home.  It was a great vacation, but it's always nice to get back home. :)