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!!