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Wednesday, December 7, 2016

A Merry Merrill Thanksgiving

For Thanksgiving the entire Merrill clan got together. This was a pretty big deal since that hasn't happened for almost 5 years and it was the first time when Granny B and Grandpa Joe have been in the same room with all of their current grand kids. It was pretty great.

Granny B brought little paper turkey kits for the kids to make. They were pretty excited about it.

Katelyn helping her sister Brianna.

Things were going pretty smooth with Thanksgiving food prep, especially considering Granny B can't have gluten and Charlie's PKU. Then while the last minute preparations were happening, I broke down in tears as I was dishing up Charlie's plate. (It can be really hard to have a positive attitude about PKU, where it is not only a matter of what he can eat, but also how much, on food-centered holidays. I will just leave it at that.) So I am in tears at the counter while weighing out Charlie's food, which brought Jenae, Bonnie and Keith to my side offering emotional support and ideas for me. (One of which was from Jenae and it was genius. I weighed out the max he could have, put half of it on his plate, spread around so it looked like more, and saved the other half for when he asked for seconds. Pure inspiration. I don't know why I hadn't thought of it earlier.) Anyway, I am crying, Bonnie and the others get distracted from their tasks, and in the middle of it all the smoke alarm starts going off. Before my little breakdown Bonnie had been watching the candied yams in the oven which were supposed to in there just long enough to brown the marshmallows on top. Well when she saw me crying she forgot about those yams and the marshmallows caught on fire. You should have seen the flames. Strangely enough it became the comic relief we needed and after the flames were put out we all started laughing while trying to get the smoke alarm off.

We just scrapped the black marshmallows off, put new ones on and tried again. No flames this time.
Thanksgiving dinner was wonderful, it was really nice to be with family around the table, and Charlie loved that he got seconds like most others.

You can't get the entire family together and not have family pictures taken, so the day after Thanksgiving that is just what we did. We kept it low key and had them taken in Paul and Jenae's big backyard. It is surrounded by lovely evergreen trees and a cute wooden fence so it worked well. Paul had a broken back, Jenae had a badly sprained ankle that had only been taken out of a boot the week before, so we weren't really up to trekking off to some fancy location. As a bonus, since it was cold the kids could warm up in the house when they weren't needed. Which is what Charlie and Tanner are doing.

Jane found crazy eyes while watching a magic show preformed by the talented Merrill Magicians: Tanner and Trevor.


Keith and I got new bikes for Christmas but we couldn't wait until Christmas to play with them. Of course. So we took them to Dayton with us so we could take them for their first real ride minus kiddos. It made me happy. :) I haven't ridden a bike in quite awhile. One major reason being that having a seizure while riding a bike would most likely end badly. And in case you were wondering, Shawn and Keith bought each other the same cycling jacket two Christmas's ago. Twinners!

Saturday we went to this really fun park in the woods. I handed my phone to Shawn at one point and it ended up with Shawn selfies on it.

 He is single, ladies.

Oh yeah.


While at the park we thought we would take another K2 family picture. Ya know, just for kicks.
Charlie was squirmy and being silly.

Then he was making faces and Jane was slipping.

This is the best one. Not bad.


 The purpose wasn't to have a photo shoot anyway, it was to get outside and have some fun.
Jane still mentions how she didn't like it when Charlie was pretended to be a scary spider at the park.

This guy came with a pretty great family.

Monday, November 21, 2016

Hair (or lack thereof) Update


I know this is kind of a strange thing to blog about, but I wanted to document my journey and this is a part of that.

This is (hopefully) the extent of my hair loss. Pardon the hat hair.
The baldspot spread along the left side which made it impossible to hide with the ear warmers that I have been given by sweet friends. So I decided to just cut it all of and go with a short pixie since I am going to live in hats anyway for the next few months.
The day before cutting it off.
I have realized two things since loosing half my hair:
One, my exposed scalp is incredibly sensitive. Like really sensitive.
Two, I took for granted how much heat my hair kept in. I am constantly cold now and sleep in a loose (remember the sensitivity) fleece winter hat. Even with a pile of blankets!

Radiation: a Blessing in Disguise


The plaque above the bell reads: Life is not measured by the breaths we take but by the moments that take our breath away. Smile-this is one of those moments!
My 29 days of radiation treatments are finished! It went far better than expected and, as strange as it may sound, it was a blessing in disguise. For one, contrary to expectations, it has drastically reduced the frequency of my seizures. The best average I have achieved is one every 3 days. Three years ago I was having 16 to 24 a day.

In the last 47 days I have had one. Only one single seizure in 47 days! The emotional freedom that has given me is tremendous!!!

 Along with her my "moms" have come for weeks at a time to drive me to those appointments, cared for Charlie and Jane so I could take much needed afternoon naps and just been a wonderful support to me and my little family. My Dad also came for the last of it. :)

We tried to make the best of the daily long trip to the hospital so almost every time we would go someplace fun. We spent several days at the extensive Missouri Botanical Gardens and frequented the Butterfly House on occasion. I am forever grateful for emotionally healing places such as those when wild places are so far away. Each of those trips could use their own post but this will have to do.

Another blessing has been the time I have spent with Jane. She has been my little "radiation buddy" and has taken the long trip to the hospital and back again almost as many times as I have. And she has been incredibly great about it. I let her help me ring the "victory" bell in the lobby after my final treatment. It was a moment filled with gratitude. Gratitude for the blessing of the technology that is available to give me this freedom, for the doctors and technicians who were so great and kind, and for the beginning of the realization of God's promise that the seizures would end.


Walking away after ringing the bell with a lump in my throat. Another part of the journey behind us.

(And I got to keep my mask which the kids have had a lot of fun with. :)  )

Sunday, October 23, 2016

Radiation

The room I spend roughly 20 minutes in five days a week for six weeks. The little wing looking things on the side go forward and the round part on the top moves back and forth. Well at least I think it does. I was fitted with a VERY tight mask made just for me in which my head is firmly attached to a head mold that is bolted to that table during my treatments. (Google brain tumor radiation pictures and you will get the idea.) This mask is so tight that it prevents me from actually opening my eyes enough to see much of anything, but I do notice a shadow occasionally passing over my face. That table is every bit as uncomfortable as it looks, in case you were wondering. It can move up and down, forward and backward, side to side, to get me lined up to the exact place I need to be so that the radiation goes right where it needs to be in order to blast the tumor to smithereens. On the plus side I do get to pick a Pandora station to listen to. I highly recommend The Piano Guys for both MRIs and radiation.
As some of you already know, I began radiation treatments three weeks ago. (Chemo will follow.) As you can imagine, this was not a decision that was easily made.

When we first moved here we met with Dr. Kim, my new neuro-oncologist. Access to a more comprehensive cancer team was one of the reasons that made me want to come here in the first place. After going through my medical history with him, he said it sounded like I should see a neurologist. I told him that I had wanted a neuro-oncologist so that I could start doing more to actually get the tumor to go away in the hope that by doing that the seizures would go away. He agreed that that was a good possibility and asked if he could present my case before a group of specialists the following Monday. Apparently every Monday night a group of doctors, within any specialty dealing with brain cancer, meet to discuss various cases. (That sounds both dull and fascinating all at the same time.) So the following Tuesday afternoon I got a call saying that the unanimous recommendation was radiation followed by a mild form of chemo. Well, related to other forms of chemo that is. Also, the genetic makeup of my particular tumor makes it respond well to radiation and chemo. it is also a low-grade tumor now but it has a high probability of getting really nasty in the future. It only makes sense to treat it now when we don't have to be really aggressive with it.

My reaction to that news was mixed. One the one hand I was scared. Who wouldn't be? On the other hand it felt so good and so right to finally be doing something really proactive about the tumor. (I feel that I should acknowledge here that there are other treatments termed "alternative" that people are proactive as well, and I don't deny their worth. All that I feel to say about that on this blog is that for me, at this time, I feel that it is appropriate to utilize some of those as complimentary to my radiation and chemotherapy.) It also was comforting to know that this was not a recommendation made by one doctor. It was made by a room of doctors from several backgrounds. More than that though, I have had two very real sacred experiences that told me, without a doubt, that these seizures would not last my entire life. That promise has given me hope and that hope has given me the motivation to continue to search for a cure even when doctors say that, because none of the seizures meds have worked, the goal is to simply improve my quality of life with the seizures.

There are pros and cons to radiation, specifically my kind of radiation.

Cons:
 -extreme tiredness. By the latter part of the week, for me to be a functional human, it is crucial that I take about a two hour nap in the afternoon. And I still sleep through the night just fine.

-my brain doesn't work as well as it did before radiation (and that was worse than before the seizure meds). People joke about being forgetful and not remembering a particular word, or why they walked into a room, or having a conversation about something. But these are things that happen multiple times a day, everyday. When there are beams of radiation passing through your brain tissue, no matter how small and focused they are, they still do some damage. On the plus side, I am young and, with proper care, brains can heal from relatively small injuries as this. Basically, this shouldn't be long term.

-you get dizzy at times.

-you get headaches at times.

-your hair falls out, temporarily, in patches where the majority of the radiation enters your head. (whimper)


Luckily it is becoming hat weather... And even if I become one of the rare cases where it doesn't grow back, I would much rather go through life without hair and without seizures than the other way around. If that was the sacrifice I had to make to live the rest of my life without seizures and all that that brings with it, well I would just buy a lot of hats. (You generally need one anyway when climbing mountains. ;) )

-and your scalp itches. A lot. Hooray for aloe vera mixed with lavender oil! 

Pros:
-your extra wonderful mother and mother-in-law, come to help you out and you get to have fun times that you wouldn't have if you didn't have someone to drive you around. Seriously, this as been the second greatest blessing of the whole radiation thing.

So what is the best thing you ask? Well I will tell you...

you may just set a new record for the longest time you have ever gone without seizures!!!!!  
 (That is the largest I could make the font.)

That includes post-surgery periods. As of today I have gone 18 days without even the tiniest of seizures. 18 whole days. Over two weeks. 

What if I have had my very last seizure. 

I don't hardly dare to think of that possibility...

Saturday, October 1, 2016

An Adventure Filled Black Week



One of my most favorite people (and college roomie) came up from Oklahoma with her kiddos to spend the week with us. We had so much fun! They lived in Hawaii for the last several years so Charlie and Manu (as she refers to him on her blog) had never met and I had never met either of her boys.
 
They all hit it off well (except for a few skirmishes between the two older boys...).


Jane is holding a berry for D to smash with the rock in his hand. :) Jane referred to D as "the baby" up until the day before they left. Manu kept on telling her that D was a toddler, not a baby.

 
"The baby" wanted to come inside but this face was so incredibly funny that we left him out for a while just to get some pictures of it.

 
We made the most of our week together and did something fun each day. One excursion was to the butterfly house. I could hang out there for a long time. Watching butterflies is so relaxing.

 Manu was the first to have a butterfly land on him.

 By the end all of us did, except for the littlest two who moved around a bit too much.

 



 Newly created butterflies!

 Spending time with this wonderful woman makes my heart happy. (notice the blue butterfly photo bombing in the foreground)

 Oh, and if you could knew what sound bees made you got a free honey stick at the gift shop. Yummy sticky goodness.
Hanging out at the super cool playground down the street.

 


 Jane in her "popcorn."


When Charlie found out that Manu had never made a baking soda and vinegar volcano before we absolutely had to do one. Complete with dinosaurs in peril.

 
 Manu walked with me one day to get Charlie from the bus. As we walked he told me of his inner conflict. He loved being here but also missed his dad who was back in Oklahoma. Sweet boy.

 
One afternoon I heard the rumble of thunder and said that it sounded like a storm was coming. Manu, in complete seriousness, looked up and told me that he would go outside and take a look because, as he put it, "I am a meteorologist."

 
 I hadn't taken a good ol' ramble in the woods since coming here so we took the opportunity to do so. The extensive Busch Memorial Conservation Area is about 20 minutes away so off we went. It was incredibly nice to be back in the woods. It is comforting to me to be surrounded by trees. Almost as if they are sheltering me from any outside turmoil. Even a short time in the forest makes me happier.

 
 It is fun to see how much my kids enjoy it too (at least almost always ;)  ).

Friday, their last full day here, I excused Charlie from school and we spent the better part of the day at the super cool science center. In the picture above our budding statisticians are learning about probability curves.


The Black's make promising paleontologists.

Much to my surprise, Jane's favorite part was the big T-rex that moved and roared.


Charlie's favorite part was the excavator with real controls. No surprise there.


This was cool. as you made mountains and valleys with the white sand the computer shining light from about would adjust to make topographical lines on the sand formations.

Watching cars go by on the freeway below the science center bridge.


The week went by entirely too fast. Come back soon Deb! We miss you already!