Sarah Saves the Day

When we heard the exciting news that Shawn and Sandra were going to be married in the Mexico City LDS temple we were thrilled. Of course both Keith and I wanted to be there to support them and to visit Mexico. It quickly became clear though that unless someone was found who could take on Charlie's school schedule and PKU diet, I wouldn't be able to go. I racked my mind for the longest time. All of my friends here had kids of their own that needed to get to school as well, none of which went to Charlie's school. Further more I couldn't see asking any of them to take on Charlie's diet. My parents are in Ghana, Liz just had a baby, and Sarah had two small kids of her own. However, she seemed like the best option and I knew I could trust her completely to take on it all especially Charlie's diet.

So I called her fully expecting her to turn me down. Much to my surprise she said a very enthusiastic yes! We planned for some "fun" days before we left for Mexico and had a great time introducing them to some of the main attractions of St. Louis. Those days were also used to prepare her for the task ahead. We meal planned (including Charlie's meals and lunches), went over school schedules and bedtime routines. I explained to Charlie and Jane multiple times that Aunt Sarah would do some things differently while we were gone and prayed that it would all go well. Or at least that Sarah wouldn't have her bags packed and ready to catch the first flight home once we returned. 

The doctor kit is always a hit with these two. They got along splendidly.

The butterfly house!

The Blue Morpho butterfly is Jane's favorite. Usually they are difficult to take a picture of because as soon as they land they close their wings exposing the underside which is mostly brown. This one is the first I have seen that kept it's wings open. They only live for a few weeks so there is a good chance that it was just old and tired.

Across the hall from the large glass butterfly room is a small room where there are various activities for kids to do. They change frequently so we popped in to see what was there. One of the activities was pretending to be an entomologist and sort "chrysalises" by shape.

Night time stories with Aunt Sarah were big hits. For several days after Sarah left, every time I read to Jane she would stop me and ask me to do a certain character's voice "the way Aunt Sarah does."

No visit to St. Louis would be complete without a trip to the zoo...

(Braids courtesy of Aunt Sarah.)

...and the science center! This was the activity Charlie requested we save to do on Saturday when he could come. So even though he evaded the camera, he was there. :)

Sarah the engineer designing a nuclear power plant.

The Discovery room is great. Among other things, it is completely contained. That means that for the hour we are in there I can relax a bit and turn off my high alert mommy mode that is constantly on in crowded places. The kids like it because there is a limit to the number of people in there each hour so they get to play with more things. It is also focused more on little kids so it is Jane's favorite part of the science center.


Grant and Jane quickly went over to the space center. Jane picked up the play astronaut helmet and plopped it on Grant's head.

Jane is very particular about her outfits these days. She wore her butterfly shirt to the butterfly house, her "zebra" shirt to the zoo, so she wanted to wear a "sciencey" shirt to the science center. Her shape shirt fit the bill. Her desire to coordinate clothes with activities rubbed off on Grant so he wore his dinosaur shirt.

Last, but not least, Sarah brought the ties that my mom had picked out in Ghana and shipped to Sarah to distribute to the male members of the family. Keith, Charlie and Grant all wore them for the first time to church on Sunday. Charlie thought it was pretty neat to have a real tie that ties like daddy's, as opposed to a clip on tie. They were a big hit!

And the next day (and all too soon) Keith and I were off to Mexico!

Winter in St. Louis

We have been keeping busy this winter. Here is a photo dump of some of what we have been up to...

Paul and Jenae and family spent a day with us shortly after Christmas on their way to Arizona. It was super cold so we took them to the science center. One of the places in the science center the kids tend to always go is the Mars Rover room. Specifically the place where you get to build your own.

Then you give it a test drive.

 Keith made one for Jane with a bit of her help.

One of the things Charlie has wanted to do for the longest time has been to ride to the top of the Arch. Keith had time off after Christmas so we decided to go.

Waiting for the little door to open so we can enter our tram "pod" that will take us to the top.

Only 5 little seats per pod. It was like being inside a large egg with a glass door so you can see out into the inside of the arch. The engineering behind the whole process is fascinating to me. The actual engineers in the family would think it is pretty cool.

Little windows at the top!

One of the things that was a big seller for Keith in our house was the basement that is almost completely unfinished. He worked in construction and this was a blank canvas that made him giddy. The part of the basement that is finished is fairly small and we really wanted to open it up more to give the kids and their friends a bigger place to play and go crazy without driving me crazy. So we are finishing a section of the basement and will knock out the wall in between it and the original finished section. Keith has enjoyed having a project, especially during the winter.

Molly likes to follow me down and sniff around the construction area while I am there. Whenever we send her out she is right there on the other side of the door waiting for us. The framed in box looking thing in the corner goes aroung the sump pump. However, the sump pump pipes aren't that tall so Keith framed in a raised floor for a reading nook that will have little steps going up to it. It has been fun to brainstorm various ideas of how to make the space fun for the kids.

The kids get so excited when Keith has a job that they can help with!

The flu season has been bad across the country this year and we didn't escape it. It hit some of us twice! It melts my heart to see how kind Charlie and Jane are when a family member is sick. They run to get their favorite stuffed animal or doll and give it to the sick person to help them feel better. Not long ago Keith and I were both sick at the same time. Ugh. Jane took her two most loved dolls and gave one to each of us so we could sleep with them instead of her. They draw pictures, cover the person with their own blankets and tell them over and over how very sorry they are that you are sick. Charlie likes to help Jane feel better by reading her books when she is sick. 

 Charlie had a birthday!!! 7 years!!! Can you believe it? He is such a kind-hearted, inquisitive, energetic kid. We love him to pieces.

 Speaking of which, he read in a book one day about a neat way to see the patterns that salt makes as it melts through ice, so naturally we had to do it. You sprinkle salt on ice then add food coloring which lets you see the veins of water left behind by the salt crystals as the melt deeper and deeper into the ice. It looks more impressive in real life and with clear ice, which we didn't have.

 We also made slime for the first time. It was more fun making it than playing with it! Or at least I think so.

 We added glow in the dark paint to ours as well. :)

 We don't have many days where we are going out in public so Jane has been choosing her own clothes with little say, if any, from me. This particular day made me laugh. She was wandering around obviously frustrated about something when she found her cat ears. She got a huge smile on her face, put them on her head, and proclaimed: "Perfect! Now I'm a princess!!!" I'm not sure what cat ears have to do with being a princess, but then again I am not a 4-year old.

And last but not least Charlie is doing great in school. They recently celebrated the 100th day of school and he got these glasses. I don't know how well he could see in them but he managed to complete his spelling words while wearing them!

Let the good times continue! (And I will try not to get too far behind...)

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...

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!