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...)

Jane's 4!

Back in October our darling Jane turned 4! She was very excited because now she could say her age properly. Before she had told people "tree" when they would ask as she hasn't quite mastered the "th" sound. She was pretty self-conscious about it. That fact seemed to be the main reason for her excitement with becoming four.

Here are just a few things I love about Jane...

 She knows how to have fun. The above pictures were taken as we waited almost an extra 30 minutes at the bus stop for Charlie because he had gotten on the wrong bus. She was quite entertained with a small puddle.

 This girl LOVES to dance! She has involuntarily moved to music since she was less than two and she still can't sit still. Now, however, she wants me to pause the music so she can go get her dancing clothes on. This always includes a skirt that twirls well, socks, and occasionally accesories like cat ears, mardi gras mask, a necklace, etc. In the picture above she is giving her friend Gracie twirling lessons.

 She is inquisitive and caring. We found a freshly dead baby garter snack on the walk home one day and we brought it home to examine with the magnifying glass. She was fascinated by the little scales and now wants to bring home most little worms and snakes that we find on our walks, no matter how long they have been there... yuck. She is also passionate about fall leaves. We would go on walks in the fall and I would show her the difference between maple and oak leaves. She picked it up quickly and would run and stuff handfuls of leaves in her little pockets whenever she saw a maple or oak tree. at home she would remove them from her pockets and glue them to colored paper. Nature art, as Charlie and she proudly called it.

 She is an absolute goofball. She loves being flipped upside down, raspberries on her belly, telling jokes that only Charlie and she find funny, and making funny faces in the mirror.

 She is my little big helper.
She loves being outside (as long as she is warm!) playing in mud, jumping on the neighbor's trampoline, swinging, perfecting her balance on "green" her balance bike, and anything Charlie is doing.

 She is really into horses/ponies/unicorns these days so naturally she requested a pony birthday cake. I don't do creative cakes. They intimidate me. So I got on Amazon, bought some unicorn figurines, stuck four on the cake and silently prayed she would be satisfied.

She was. (whew!) And as a bonus she got more additions to her pony/horses/unicorn herd.

Happy birthday my darling.
Ugha mugha.

Meet Molly

Last month God gave us a dog. That really is the best way to explain it because it just can't be a coincidence.

One Friday night the neighbors heard her barking and whining outside. When they went out to check they found a drenched little Yorkie with thorns in her over-grown tangled fur. They pulled the thorns from her fur and gave her two baths. She had no collar so she was taken to the vet to be scanned for a chip but there wasn't one. While she was there the vet trimmed her painfully over-grown nails.

The neighbor's kids took her around the neighborhood asking about her. They put up signs and posted her picture on Facebook all in a fruitless attempt to find her owner. There was one big problem. Although our neighbor is an animal person, her husband is not. At all. He left for work that morning making it perfectly clear that he didn't want that dog to be there when he got home.

That is where we enter the story. It was a Saturday and we were just heading out for a community event when we saw our next-door neighbor with her kids carrying a rather disheveled looking pup. We stop, she tells us the story, we offer to care for the dog until the owner is found. Keith and I both hoped that the kids...er...me... I mean us... wouldn't get too attached before then.

The poor dear was terrified for the first couple of days. It didn't help that Charlie and Jane were so excited about having a dog that they were all over her. We sat them down and walked through what we knew of her story with them. We talked about how scary it must be for her. After that they were better about giving her space and being gentle and slow around her, but they are kids so it was really hard for them. She warmed up pretty quickly though and after two days I was starting to feel guilty for hoping that her owners never called so she could be ours forever.

Jane just chillin' and picking her nose while Molly keeps watch from her perch.

The day the neighborhood signs came down and we went and bought her a collar with a tag that said Molly Merrill, I just kept on thinking that it was just too good to be true.

Between Keith's experience cutting his own hair, and my limited experience as Assistant Sheep Shearer, I think we did a pretty good job.

Here's why I thought that and why I say God sent her to us.

We have wanted a dog for quite a while now but I didn't want to have to train a puppy, especially potty training, while undergoing cancer treatments. Molly is, according to the vet's estimate, about 2-3 years old. She is completely potty trained, super mellow and doesn't chew on anything.

We also wanted a small dog that would work well in the house. Check. Keith and I both have some allergies to dogs, nothing severe but enough that we wanted a dog that wouldn't bother our allergies. Yorkies are very allergy-friendly dogs. Also they don't shed any more than a person. Instead of having fur that constantly sheds they have "hair" that is much like human hair. It just keeps on growing. That means that she requires a bit more grooming than your average dog but that is okay with me.

Molly laying in her sun puddle just like every morning.

Pretty much if almost any other dog had showed up that night and the owner never came forth we would have had to just given it to the shelter and prayed that she would find a good home before it was too late.

And then there was the timing. I had just returned home from my wonderful Sisters Trip less than a week before. The month or so prior to that trip had been a nightmare. A string of heart-breaking events followed by physically and emotionally painful decisions. I was mad at God. Through the tumor and the seizures I had never felt completely let down by God. He would some how always reassure me that he was there. But not now. Now, it felt like He had just left me hanging.

I am sorry for being so vague. As a general rule I try to not bring up things on this blog that I don't feel comfortable telling the public about. I am breaking that rule this time because I want to somehow explain what I mean when I say that God gave us Molly.

Molly snuggling up with me when I felt yucky on a chemo day.

My mom says that God has always spoken to me through animals. As I have thought back over my life I find that to be true for the most part. It is His unique way of letting me know He is there and aware of me. He used a mouse to show me he hears and answers my prayers. He used birds to reassure me of His love when I was pregnant and having several seizures every day.

And now He has comforted me by sending me Molly. I just have the strongest impression that, through Molly, He is letting me know that He was there during those terrible, heart-wrenching weeks. Even when I was mad at him.

She will forever be my constant reminder that God loves me and never truly forsakes us.

Walking home from the bust stop. Molly loves all the attention she gets from the kids there.

That makes Molly extra special.

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...

Life's Seasons

I made the mistake of looking through old blog posts at night. Looking through posts before the seizures always make me ache for the freedom I had. I took it for granted. I took it so very much for granted. At least I enjoyed it.

It is hard at times to stay positive. Growing up I was surrounded by nature. In college, the mountains with their trails and climbs were right outside my front door. I biked everywhere without fear of having a seizure, losing control and crashing. In Raleigh I could walk to Lake Johnson - my refuge and place of peace. I could drive to the arboretum and watch Charlie run free.

I don't want to dismiss what I do have; the park just down the road with trails that wind through the rows of homes, friends that give me rides to weekly playgroups. How I am going to miss that weekly bit of social interaction! I am grateful for all the people here who have done so much to give me the ability to get out. Don't get me wrong on that fact, they have been wonderful.

I still miss the freedom and independence that comes with the ability to drive. I could wake up in the morning and decide that I want to go to the lakes with the kids and go. Just go. I wouldn't have to have made plans days in advance to have someone take me. I wouldn't have to feel like I was being selfish asking for someone to take me.

I miss being able to drive. Rather, I ache at times for the freedom that driving brings. I also miss being near natural places. I am within drive-able distance from them, but when you can't drive it doesn't make that big of a difference.

I keep on trying to remember that there are seasons in life. That how things are now doesn't determine the future. I try hard. I also remember that there are so many people out there who have it worse than I do. Not being able to take a ramble in the woods when they want, not being able to drive, or seizures, are all worries that they would trade theirs in for in a heartbeat. Just thinking about the heart wrenching trials that others deal with makes me feel guilty for complaining at all.

But it is still hard. There are still nights when I can't fall asleep because there is a lump in my throat. And there are still others when that lump turns into quiet tears of mourning for what was.

I know this is just a season of life and at some point it will change into another season. Hopefully it won't be a season in which I wish with all my heart that I could have this one back.

Ecclesiastes 3:1
"To every thing there is a season, and a time to every purpose under the heaven"

I wish I could more fully understand the purpose of this season.

Maybe when I do, it will end.

Celebrating Earth Day

Happy (belated) Earth Day!!!

As I write this, Keith and I are driving from Fargo to St. Louis, a trip which is taking us south with the Mississippi through the center of the country. We drove out of the town which was slowly clawing it's way out of winter. It kept on slipping back.

Iowa had made more progress. It had a foot firmly placed in the door of spring and a few farmers were beginning to plant their fields.

Missouri had flung the door of spring wide open with its colorful flowers and blossoming trees.

One of my absolute favorite things about road trips has always been watching out the window to see God's handiwork change. Sometimes the change would be dramatic, such as traveling west across North Dakota into the badlands or from the peaks of the Rockies onto the flat prairies below. But most are subtle. The  gradual change of vegetation, or the slow from utter flatness to the gentle rhythm of traveling over low rolling hills.

It will come to no surprise to those who know me that this is one of my favorite scriptures:

Doctrine and Covenants 59:18-20

Yea, all things which come of the earth, in the season thereof, are made for the benefit and the use of man, both to please the eye and to gladden the heart;

Yea, for food and for raiment, for taste and for smell, to strengthen the body and to enliven the soul.

And it pleaseth God that he hath given all these things unto man; for unto this end were they made to be used, with judgement, not to excess, neither by extortion.

God intended us to fully enjoy, not simply use, his creations. I want my children to know the simple joys of breathing fresh air as they explore open places and forests, watch small bugs in the grass, hear the magical sounds of birds, and feel cool mud squish between their toes. I want them to delight in nature's wonders, as I do. God saw fit to preserve my life on Earth day three years ago and I am going to do my best to live it fully; not just for my sake but for that of my dear children. They deserve nothing less.

Christmas in Utah

A huge "bonus" to Joe and Jessica being married in Utah in December was that it meant that we got to spend Christmas with Granny B and Grandpa Joe! I know this post is REALLY late, but how could I skip a post about a Christmas with grandparents?
 

There was lots of snow so Grandpa was glad to have extra shovelers around.


We took a trip to the aquarium and it was a hit.




Jane loved the toucan and Charlie loved posing on giant frogs. Jane enjoyed sitting on the frogs but did not enjoy getting her picture taken.


Sledding! Charlie had been desperate for a hill so he could go sledding. Poor Fargo kid.

 

It isn't sledding without races and as it turned out, we all have a bit of a competitive streak. Keith had to strip down to his shorts to show just how manly he has become from living through Fargo winters.

I love these two fun people.

 

Rocking a pink snowsuit while sledding is tiring work.

 

Fox and geese with Grandpa. Charlie had been waiting to have enough people (3 or more) to play this ever since the first snow fell in Fargo.

Grandpa Joe training Charlie in the art of bird identification with the quail and finches out the backdoor.

Granny B gives a new Christmas tree ornament to each grand-kid every year. This year Charlie and Jane each got a little owl.

Bonnie graciously used her sewing magic to greatly improve a poorly made dress I had. As I snapped this picture I heard Charlie say to Granny B: Oh! So that is how you sew! :)

All Granny B asked for for Christmas was an updated and nice photo of each son for her photo wall. So when Shawn sent Keith a digital image for Keith to print out for the wall Keith (with some help from Charlie) made sure it looked nice.

A white Christmas! It was perfection!
Well I thought so at least. But then again I wasn't the one who had to drive to the airport to pick up Shawn and his friend Christmas morning. :)

Jane checking on Ginger, pushing her new baby stroller and brushing one of her new Christmas ponies.

Sadly, shortly after Christmas, Ginger went to heaven where I am sure she is waiting enthusiastically for the one who loves her most. It was a treat to see her, and for the kids to see her, one more time before she died.

Keith and I took a drive with Charlie one day and showed him the sights of our old stomping grounds. Included in the tour was the apartment he lived in when he was born and the newly completed Provo City Temple. A building transformed from historic tabernacle into a holy temple after a fire destroyed everything but the exterior walls.

A trip to Orem wouldn't be complete without visiting the Clegg Clan!

Jane literally would try to yank their baby James from my arms every time I took him out of hers because he was crying. The girl is baby obsessed.

Our entire Utah trip was full of family and lots of love. I don't believe there is any feeling better in the world than being surrounded by love.