Weekly update

Here it is Sunday again, and we've made it through another week.  Jacob and Kera started school last Monday.  Kera showed up for her first day of school brave and strong.  After showing Jacob where his class was, he is in a portable classroom this year with a very confident and eager 6th grade teacher, I walked Kera to her class and showed her where her desk was.  Both of her teachers were there that day, and I left her in their capable hands.  I was a little nervous to leave her not knowing what she would go through with the kids around her not knowing what she had been through all summer, but I knew she would be okay and that she wanted to be there.  I came back to the school at 11:30 to pick her up, and she had a big smile on her face.  She told me about her morning as I drove her to Salt Lake for treatment. 

 There were some hard moments, like when some kids that she had in her class last year asked her what happened to her, and she really didn't want to answer their questions.  She told a few of her close friends about getting sick and having something wrong with her brain and having to take medicine that makes her look different, but a lot of the kids she just said I'll tell you later or that she didn't want to talk about it. Also there were two girls in her class this year that were in her class last year, and one of the girls said something to the other girl and the other girl said "that's not nice to say" and they were looking at Kera.  Of course with the weight gain and puffy cheeks, Kera is very self conscious, and she has some patchiness in her hair as well.  Her eyes are pretty close to normal, but the right eye is still a little lazy.  She wants more than anything to just feel normal and to be like her old self again.  We just have 3 more treatments left next week, and then we will be done!!  She is still taking 1mg of the steroid but will taper it down to .5mg after treatment for a week, and then no more! She is almost back to her pre-steroid weight, about 5 lbs heavier.  She got up to 15 lb. heavier at one point, so definite progress there.  

Monday night we played Pictionary for our family home evening activity, and I could tell Kera was tired and pretty irritable.  It was her turn to draw and she was drawing a picture of Buzz Lightyear.  We didn't guess it before the time was up, and when she told us who it was, Michael said something like, he looks like he's in his underwear and he started laughing.  Well that set her off and she was very upset and crying.  I tried to get her to calm down, and we talked later down in her room, and that's when she told me about the hard things she faced that day at school, and she told me she didn't want to go back.  I told her to give it another try, and that the first day was the hardest and the kids would get used to seeing her with her changed look, and it would be okay.  So she decided to go the next day and give it a try.  She had a pretty good day, not too many incidents, but she still said it was hard to be there and have kids stare at her and ask questions.  She's also less social right now, and just doesn't feel much like talking to anyone, even her own family members.  She talks to me the most, but I still have to drag most information out of her.  

After I picked her up that second morning from school and took her for treatment, she told me that she decided she wasn't going to go back until after treatments and when she looked more like herself.  Kera woke up Wednesday morning early, crying in pain because she had a really bad headache.  She said it felt like something was pushing on her brain.  Soon after the headache came on, she felt sick and threw up.  I gave her the nausea medicine and steroid pill right before she threw up, so I had to give her another dose.  I also gave her some Advil, and her headache went away about 30 minutes later.  She still had queaziness the rest of the morning, and I didn't make her go to school.  I also let her stay home Thursday and Friday because she was on and off with the nausea and she still was hesitant to go back.  I'm not going to push her either.  I want her to feel comfortable at school and not make it an issue for her. 

When we went to our weekly appointment at Primary Children's on Friday, the child life specialist that Kera gets along with came in and talked to us for a minute.  I told her that Kera doesn't feel like being at school because she gets tired of answering hard questions about why she looks different.  The specialist told us that sometimes one of the specialists from primary's can come in and explain to the kids in her class about what Kera is going through, and if they have questions about Kera they can ask her teacher, and that she doesn't have to answer their questions if she doesn't want to.  She asked Kera if she wanted the kids to know that she has a brain tumor and explain about that, or if she justs wants them to know that she's been sick and is taking medicine that makes her look different. She said she just wants them to know that she is taking medicine.  So that is what we will tell the kids.  I think I'm going to go in there on Tuesday and talk to her teachers and ask if they could talk to Kera's class while Kera is not there and maybe explain to them that Kera has been sick and that she has to take medicines that may make her look a little different and might make her feel nauseous sometimes or tired, and that's why she isn't there right now, and that's why she looks a little different. I will tell the teachers to have the kids ask the teacher if they have questions and not to ask Kera.  Maybe this will help her feel more comfortable being at school if she knows she doesn't have to answer all the questions. She seemed to like that idea when we were talking to the specialist about it. 

They also told us when we were at the Dr. appt. that we wouldn't need to come back every week once her treatments were over, and that the next time we come back will be when we do the MRI scan, and that will be 5 weeks from next Thursday.  I can't tell you how good it will feel to not have to drive out there every day or even every week!!  I'm looking forward to some time to relax and maybe after treatments Kera will feel ready to go back to school, but even if she doesn't, no problem.  We already talked to the lady who runs the online curriculum, so we can definitely go that route too.  

This weekend Kera has felt really good, and she hasn't had much nausea at all.  She is happy to have 3 days off from treatment, and then when we go back to only have three more days!!  :)  Friday night Dave's sister Carrie came up for her annual back to school shopping with the kids.  The tradition started a few years ago when Jacob started school.  She would come up and take them to the store to pick out a backpack, lunchbox, or something for school.  Over time it has turned into a back to school toy shopping outing.  They don't usually pick out something for school now, it's usually a toy or something they have been wanting that I won't buy them.  :)  Jacob picked out some Angry Birds star wars mystery packs and a hexbug, Kera picked out a cotton candy maker, Michael also got Angry Birds star wars mystery packs, and Ryder got a toy guitar which he LOVES!!  He is so musically inclined.  He even strums it in tune to the music he plays, and he sings along with it.  Yesterday the kids did some chores around the house, and Kera and Michael even washed my car.  It was a day of much progress.  We are getting the basement completely cleared out so Dave can start working on it again.  The kids really wants to have our basement done so they can enjoy our family room with a big screen projector and a popcorn machine, as well as a craftroom/reading room, and I will enjoy a new laundry room.  We are all anxious to get it done! Kera is especially eager, so it is our goal to have it done by Christmas, if not sooner.  We are grateful to have Ann here who loves to work on projects and help us get things done around here.  

That's the latest on our family journey.  Once again we are so grateful for everyone's support and prayers, and we know that it's because of all of those prayers that Kera is doing so well.  There are daily challenges and ups and downs, but the small miracles and tender mercies continue to sustain us and keep us moving forward. 

Dave and I were asked today to speak in church next week.  Our topic comes from the scripture in the Book of Mormon in Helaman 5:12 which says 

" And now, my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall."

This is the first talk I've been asked to give where I already feel mostly prepared to speak about.  Dave and I and our family have been forced to rely on the Lord and to continually build our foundation upon the rock of our Redeemer during this whole process, and I know that it is our faith in the Lord and the sustaining power of the Holy Ghost that has allowed us to carry on and we must continue to study our scriptures and pray and build our testimony and strengthen our foundation.  This is the only way we can have everlasting joy, and it's the only way I will remain sane.  :)