Monday, June 11, 2012

Experiment

When I started this blog my friends told me that I could post from my phone. Never have. Thought I would try it! Heehee

Never posted a picture before either. We shall see if any or all of these things work.

Saturday, June 9, 2012

Rock the Mall!

Wow! I haven't written anything here for a couple of months but today it seems to be the only way to get out everything I want to say!

As most of you know on March 12, 2012 Girl Scouts celebrated 100 years.  Of course, the celebrations continue all year long.  Today, June 9 was the long planned event called Rock the Mall.  We signed up to come in March, not knowing if we would really be able to come.   A little over a week ago, we made the final decision that we ARE coming.  Mom wanted to come, so Daddy has driven most of the way. We added LeeAva to our group and with Michelle and I, our little group spent three days driving to arrive on the Mall in Washington DC this morning.

Wednesday morning we took Mom to therapy on our way out of town.  Well, therapy took two hours instead of one so we got started late.  But it was good.  They let me stay with her and I learned LOTS. (That is for another post.) We drove about 5 hours and stopped in Shiloh, IL and Missy and Janice came and met us while we ate supper.  Missed the boys.  But we will see them next week so it's all good.

Thursday we drove and drove.  Oh wait I did drive!  Daddy needed a break, so I drove for a couple of hours and got us from Indiana into Kentucky.  We spent that night in Morehead, KY.  Of course, we had to find at least one geocache in each state we went through. 

Friday our goal was to make it to Charlottesville VA.  We made it to my cousin Brenda and Jeff's house about 4:30.  I LOVE their new house!  I liked their old house too, but really like this one.  We missed seeing Jeff because it is his Army Reserve drill weekend. But loved getting to see Brenda and her kids.  Only wish we could have stayed longer.  Thanks, Bren!

Today, the day we drove all this way for!  So six days driving back and forth all for today!  Crazy, I know!  But we all agree it was worth it. First of all, when we registered for this event, not really knowing if we would be able to come, Mom was still pretty mobile.  She got a wheelchair this week.  Probably should have had one for a few weeks before that.  We looked up handicap accessibility and could find absolutely nothing except for if you had registered that way.  So Daddy drove us to the mall, pulled over and we got out.  Well, first of all 200,000 people is a LOT of people!!!  There were people everywhere, most in the white Rock the Mall t-shirt. 

There were lots of port a potty's and they were nice and clean.  At least when I used them early in the day. We headed first to the sponsor tents.  We did not see much there, just kind of wandered with everyone else.  Certain areas were more crowded than others.  It was a sea of Girl Scouts all over the Mall. Up to and around the Washington Monument.  All up and down the Mall.  We couldn't get anywhere near the stage.  We never really expected to. 

The online information said to bring water bottles and there would be free water filling stations.  Well, they were there, but Mom couldn't wait in line for an hour.  At one point, we kind of got stuck.  There was a mash of people in the line for water and another hour line to buy food and another hour line to purchase the first day issue new Girl Scout stamp.  All of those lines mushed together and we had trouble pushing Mom's wheelchair.  We made it through with LeeAva pushing Mom, me clearing a path, and Michelle holding her hand.  (She grabbed on and wouldn't let go.)  We made it through and breathed a sigh of relief. 

We found a semi-shady spot to sit and hang out for a half hour until a Geocaching World Wide Flash Mob was going to happen.  We were a little worried about Mom.  She was looking very worn out.  We had planned for Daddy to come back and pick us up at the end- 4:00.  Mom asked me to call and tell him she wanted him to come back early. 

The event was named a Sing-Along.  But there wasn't much singing along.  I did record all of us singing along to Girl Scouts Together. 

So at 1:00 straight up a bunch of people formed a circle and sang Make New Friends. Michelle turned our names into the geocaching head.  That was kind of cool! Mom was ready to go.  She told us to stay, but we decided we were all done, as well.  We came, saw, sang a little, took a bunch of pictures.  It was all good! We were happy!

So I called Daddy and he headed towards where he dropped us off and so did we.  That area had more trees so was quite a bit shadier.  Mom perked up a bit and we waited. While we were walking that direction, police suddenly ran by us yelling "Make a Hole!" Of course, we moved over.  Had no idea we would soon see the people they were after.  We don't know what they did.  We think maybe they were stealing, but we watched them carry two women, handcuffed to the curb we were about to stand at.  We waited somewhere else while those women chanted. While they waited for the police car to come get them, they chanted the whole time.  They were pretty rough looking.  Of course, they didn't get in the police car by themselves, the officers had to carry them and place them in it.  Now that was some people watching!!

When we first arrived we saw a helicopter circling.  Initially, I thought it might be a news helicopter.  But we think it was security.  There were people sitting in the open door with binoculars.  These two groups were doing their jobs and keeping all of those Girl Scouts safe and secure. 

Anyway, Daddy arrived and we left.  We ended up spending about 2 1/2 hours there.  We were all happy! Mom said she had two memorable moments- singing Girl Scouts Together and Make New Friends.  I added one- The Pledge of Allegiance.

Well, I think I am done!  Oh yeah, I felt a little bad for the obvious tourists that got caught in all of that.  These men with rented motorcycles went past us with the leader yelling "Don't stop!" And we saw a family of Indians with the women all dressed in their saris trying to get good pictures of the family with the Washington Monument.  Well, they just got the added benefit of all those Girl Scouts in their pictures!

And Goodnight and God Bless!!

Wednesday, March 21, 2012

Graduation Day

Even though Mom has 3 more radiation treatments, she graduated today. At Procure they have a lunch every Wednesday. This is when they celebrate graduations. Today 13 people graduated. 11 men, 1 child, and Mom. Mom's number is 672. The center will graduate their 700th person very soon.

Proton therapy is only available for prostate, lung and brain cancers. Hence, the large number of men graduating today. Most of them mentioned prostate cancer. The little boy looked to me like he is about 8. He is from Manchester, England.

Mom and Dad had previously talked to his parents. The little boy has brain cancer. Children with brain cancer are sent to the US for proton therapy paid for by their socialized medicine. At the age of 14, their socialized medicine system tells someone with brain cancer to go home and die.

Nearly everyone thanked the staff for all they do. Several people thanked their families and a few thanked God. A couple of things stuck out for me.

One man said he was lucky. He only lives 12 miles down the road. He remembered harvesting the fields where Procure is today. He spoke about the many things that have happened in the intervening years. All so that in 2012 his prostate cancer could be treated with proton therapy. We have discussed this kind of thing in our family. All of the doctors that have been put in our path. There are only 9 of these centers in the US. Who would imagine that one of them would be in OKC? Oh, that's right! God!

I forgot what the other things were, so I will have to come back to that later. Ooh, and I will come back to share the after graduation party Daddy had been planning since Mom started proton therapy. And the wonderful friends that helped him pull it off. Until then...

Sunday, February 26, 2012

More Notes to Consider

Some things I forgot to mention in my last post that are related to it in some way. Hmmm, we will see if you follow with me in how they are related.

First, I said that it appears that most people with the form of cancer that Mom has survive about two years. I know that is not definitive! Mom is reading a blog of a lady that is at nine years now. Some of our dearest friends from the time we lived near Chicago, well Arnie was diagnosed with the same form of brain cancer I believe when us kids were in middle school. He lived for another 20 years! Over half of that time was good time. So I know these things are possible.

Second, my mother-in-law's mother died of brain cancer about 50 years ago. This journey we are on has brought some flashbacks and bad memories for her. I wonder how they even diagnosed her brain cancer without the technology of Catscans and MRIs that showed the doctors what Mom had. There also were not the treatment options available for Rose that are now available for my mom. I did ask Ralene how long between her mom's diagnosis and the end. She told me it was three months. That fits exactly with Dr. Stanfield's statement about 11 weeks with no treatment.

Above all things, we serve an awesome God that can do all things! This brought to mind a Michael W. Smith song: Above all powers, above all kings, above all nature and all created things, above all wisdom and all the ways of man, you were here before the world began.

Saturday, February 25, 2012

11 Weeks and Counting

Today marks 11 weeks since Dr. Stanfield told us that Mom has glioblastoma multiforme.
Today marks 11 weeks since we saw pictures of Mom's brain through a window and knew it looked bad and then Dr. Stanfield interpreted those pictures for us. That interpretation was a tennis ball size tumor in the middle of her brain and a grape size tumor near the top of her brain.
Today marks 11 weeks since we were told that Mom has one of the worst kinds of brain cancer there is.
Today marks 11 weeks since Dr. Stanfield told us that the median survival rate of this cancer is 11 weeks without treatment.
Today marks 11 weeks since I felt stabbed in the heart.

11 weeks is 2 days after my brother's 40th birthday.
I think today is a great day to celebrate! Mom is having many treatments so she is fighting with all she has. But we celebrated for the last two days my brother turning the big 4-0! And today we celebrated by attending a former Girl Scout's wedding in Weatherford, Texas. Congratulations go to Nikki and Tim!

A few things to note here: I am the one that counts today as 11 weeks. Mom and Dad count yesterday. In the emergency room on Friday night, December 9 the doctor told us Mom had a mass. She says that felt like someone punched her in the gut. It made stroke sound really good! So Mom and Dad counted 11 weeks to yesterday. I think I count 11 weeks to today because it was Saturday, December 10 around noon that Dr. Stanfield actually gave us those horrific numbers that spun around in my head for weeks. They still rear their ugly heads some.

Dr. Stanfield told us the median survival rate without treatment is 11 weeks and the median survival rate with treatment is 22 weeks. Dear God! What do we do with that!! So 11 weeks is right near my brother's birthday and 22 weeks is very close to my birthday. Mom said she would get to see the blossoms on the trees but not the fruit. What a great picture!

As we all know my mother is fighting hard! She has chosen aggressive treatments including two brain surgeries, radiation and chemotherapy. Before we went to Baylor, we thought we were celebrating our last Christmas together. That is truly what we were preparing for!

For the last couple of months friends have asked me about Mom's prognosis. I answered honestly that I didn't know. 11 weeks and 22 weeks ran through my head so much that I quit listening to the numbers. They hurt too much! All I really knew was that we walked into Dr. Fink's office with a prognosis of weeks and we walked out after our consultation with Dr. Nestor with a prognosis of months and years. I didn't really know the numbers.

What I am understanding now is that most people survive about 2 years with this form of brain cancer. As much as I don't like that, I do like it a whole lot better than 22 weeks! Mom and Dad and I talked about how we would rather have her here for a lot longer but 2 years is much better than we were originally told. We also know that we serve an awesome God! Mom will live on this Earth as long as His plans for her remain. And those plans are for good and not for harm!

Sunday, February 12, 2012

Grace!

So I am feeling overwhelming grace today! God's grace is sufficient! Wow! Of course, lots of people at church asked me how Mom is doing. It is so amazing to me. She has had two weeks of chemotherapy and two days of radiation treatment. The only side effects she has had are she is tired. That is it! I know that could increase greatly, but that seems amazing to me. God's grace is sufficient!

In early November, my cousin Becky came (with her daughter and best friend) for the weekend so that we could go to Women of Faith. We loved it! And plan to go again next year. We just have to decide which city. We enjoyed each of the speakers. I think probably the message that stuck with me the most was from Patsy Clairmont. She told an amazing story of her son's illness and brush with death two years ago punctuated by these three statements. People Matter! Prayer Matters! Change Can Be Good! I knew it was important while sitting in the arena, but it stuck with me. One month later when this journey began those words ran through my head. I repeated them to people at the hospital. Who knew God's grace would give me those words, those thoughts when I needed them most.

Prayer Matters! I know that lots of people are praying for my mother. I mean lots! I know lots of people are praying for our family. I know that sometimes I feel like that is what is holding us all up. Thank you! Thank you!

Saturday, February 11, 2012

Yeah for Radiation!

So I did not succeed in 2 or 3 posts this week. Who knows maybe I will write 2 or 3 today! HeeHee

A good part of the past week was spent waiting. Waiting! Waiting! I kind of think that made this one of the hardest weeks in this whole journey. We were always doing something to fight this nasty stuff growing in Mom's head, but for one whole week we had to just wait. Oh it was hard! I know it was hardest on Mom. She had already been told by the doctors that both tumors were growing back and to start radiation ASAP. But she had to wait, wait, wait on when to start. I guess the Israelites waited for 40 years wandering in the wilderness, so maybe 1 week isn't quite so bad. It just felt really hard.

So Mom started radiation on Thursday! Yeah! Who ever thought I would say Yeah to someone killing brain cells in my mother's head. So weird! But we were all sort of celebrating. It was the beginning of the next step in this battle. I know Mom felt the same way because she looked much more relaxed when I saw her Thursday after school than she had in over a week. She was able to do something more than wait.

Oh, and by the way, they had told us proton therapy was no longer an option because the tumors were already growing back. But when she arrived for radiation, they took her in for proton therapy. We were all happy about this. If you don't know, which I didn't until a couple of weeks ago, the regular radiation would radiate her whole brain targeting her tumors. Proton therapy only radiates the tumors, causing much less ripple effect of damage.

Apparently, there are only 9 proton therapy centers. Can you believe that one of those 9 is in OKC? Wow! OK so God made us wait, but he put that center here. It apparently just opened fairly recently. But a dear friend told us that the man who invented it came here for two years from his home in Belgium to make sure everything met his specifications. As I am typing this, I am realizing how many things God put in place just to have this treatment ready for my mother to have when she needed it. And not a moment sooner. WoW!

So far, Mom is not having side effects from either her chemotherapy or her radiation. The doctors actually say that the extreme fatigue will come later in both therapies. That is part of the reason that when Brian asked if I was going with Mom to her first radiation I said No. If she is going to be as fatigued as they say, she will need me more later. So I worked with my students almost every day this week.

I must say something was in the water on Wednesday! Every child was naughty! Even the ones who are so shy they barely talk. But they were better on Thursday. And Friday we had a great day all around! Best day in a long time! But since I teach Kindergarten again, even when they are naughty they are still so cute!!

So cute Kindergarten story- J was covering his cough with his fist made into an O. I had to teach him that his cough goes right through the O, so it really doesn't help.

That's it for now! Already thinking about a second post for this afternoon. HeeHee