Our Own Place

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Lots has happened since my last update. I always feel like I don’t do it justice if I let a few days go by without writing, but sometimes, life is just too busy.

We spent last weekend with David and Austin. It was a fun weekend. We watched “This Means War” at the movies. It had us all laughing out loud. There was nothing particularly original about it, but it was silly fun, which we all appreciated.

Richard had been on the lookout for a more permanent place to stay. The Bowles have been beyond wonderful, but as we find ourselves here more and more, it just made sense to get our own place. On a whim, we drove by an apartment complex last Sunday, and it was perfect! They had one ground floor unit available, and the layout was exactly what we needed. We signed a lease on Monday, and have been slowly moving things in for the last few days. We are so lucky to have Frieda like the Bowles and the Armers who helped us get everything moved in! And the Eatons blessed us with lots of kitchen goodies to get us started.

During that time, I also ran the talent show auditions at school (with a LOT of help) and we welcomed two of the kids’ good friends to town for a long weekend. Sean and Nikkiana came out from California, an it Sean’s words, they were here to make David laugh. We certainly did a lot of that. They are all fantastic kids and I can’t remember when any of us have laughed so much. My cheeks actually hurt last night!

David spent a couple of nights at the apartment with us this week, but he also stayed at his dad’s house one night to see his cousin, Shea. Shea is in town through tomorrow, so he’ll have time to visit with her today, too.

This week will be another busy one: school appointments, talent show, tennis for Austin, and an Avastin infusion for David. He is tired a lot, but handling things fairly well. Thanks to everyone who is praying! We are matching forward with our armor on!

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College Visit for Austin

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Today I drive down to Christopher Newport University to pick Austin up from her time with her friend, Allison. They attended a Hunter Hayes concert and then Allison showed her around CNU. It’s a small campus, and very nice. Austin seemed to really like it, and I was glad she got to have the tour.

We had a nice ride back up, and stopped at the airport to get Richard. David had stayed home with his dad, and we stopped by and picked him up.
When we got to the Bowles’ house the Friday Night Crew were all clearing out of the basement so David could get some rest. He called them back down and they played games for a while and then settled down to watch a movie.

David seemed more like his normal self than I had seen him in a while. He ate a little bit of cereal and drank some milk while watching the movie, so I was happy for that.

We are really looking forward to just having some time to hang out with him and Austin this weekend. We may even get a little snow!

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Taking It Slow

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David awoke feeling much better this morning than last night. I gave him his Zofran about a half an hour before he needed to wake up, so by the time he got up, it had taken effect. He didn’t have a headache, and the body aches were better than the night before. He ate a quesadilla (very plain) and drank an “EmergenC” drink. He didn’t get up until about 11 am, so by the time he had eaten and showered, it was time to go meet the home bound teacher at his dad’s house.

His aches have him uncomfortable when he walks, so he is taking it pretty easy right now. He’s a big fan of the Carol Burnett show, so I guess this is his Tim Conway impersonation.

Classic Tim Conway

We are hopeful that these aches will ease more each day, but take these side effects as a sign that the chemo is working in his body.

John 16:33 – “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Quality Time

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Today, I went to take David a refill of a prescription, and when I got there, Mark asked me if I’d like to take him to lunch. Never one to pass up an opportunity to spend time with my kids, I took him up on that deal.

David and I left, and I offered any kind of food I could think of. Unfortunately, nothing sounded appealing to David except milk. So we went “home” (to the Bowles’ house), and he had a glass of organic whole milk. That’s one of the last things I would want if I was queasy, but usually the thing that sounds good is the best thing. That proved true for the milk, but not so much for the plain rice that he tried to eat later.

He felt pretty achy and queasy throughout the day, and decided to spend the night so he could just stay put. He was ensconced on the couch watching taped episodes of The Big Bang Theory. It made him laugh, even as crummy as he felt. He wanted a quesadilla for dinner, so i made the plainest one you can imagine – just cheese and tortilla – not even any oil in the pan. He took advantage of the oversized tub for a soak, and felt better after that. We made our way downstairs and he was in bed by 9pm.

He still wasn’t feeling well, but hopefully the sleep will do him some good and tomorrow will be a better day.

Please pray that the side effects of the chemo will wear off soon and that the chemo will destroy the cancer cells without doing damage to his healthy cells.

Happy Valentine’s Day

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Hope this finds you all celebrating this day of love with those you hold dear. I didn’t have high expectations for today, but it turned out quite nicely.

Richard is back in Kansas today, so I was thinking it would be just another day. But the day started with a delivery of beautiful flowers from Richard.

Then on a whim, I called to see if David would like to go with me to his school to hand out some Valentine goodies. His dad told me had a little bit of a rough morning, but he was game for seeing his friends and teachers. I picked him up and got him a smoothie on the way to school. He didn’t drink very much of it, but every little bit counts.

At school, everyone was thrilled to see him. He was sporting one of the Hawaiian shirts that his Grandfather sent him. You can see it in all its glory in the picture. Needless to say, everyone could see him coming!

We passed out some candy and then I drove him back over to his dad’s to meet his home bound teacher. She started working with him today for the new semester, and she seems very nice.

After I dropped David off, I went back by the high school to see Austin. She had tennis practice after school, but I was able to see her for a few minutes and give her a valentine. She’s excited to go see Hunter Hayes in concert this weekend. It will be a big deal for her because not only is she going to the concert, she is also going to tour a college campus. It’s weird to think that they are both looking at colleges and heading out into the world.

She headed off to tennis and I went back to the Bowles’ house. I had a quick meeting with some of the kids that are helping with the talent show, then picked up Sarah, the youngest Bowles, for a valentine dinner and trip to Five Below. She and I were the only ones in the house without dates tonight, so we hung out together. She’s pretty fun and creative, so the conversation is always interesting.

So even though I didn’t have “plans”, it was a nice day.

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Off to a Good Start

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David rode to the hospital with his dad. I met them there for the 9:30 am appointment, and David said that he wasn’t feeling very good. He was complaining of being achy and his leg pain was bothering him. We are still hoping the leg pain is an after effect of the tumor there, and that it will go away as the radiation effects continue to work on that tumor. David seemed tired, but not as bad as he has been in the last several days.

His friend, Katie, came into clinic and he pepped up a little bit. Katie is being admitted today for her round of chemo. Her parents say she is doing well, and hopefully, she will be done with treatment soon.

After about an hour, they took David back to a treatment room. There was a Nintendo 64 in the room, and he immediately picked out a game to play. It’s been quite a while since he played on that system, so it was a little bit of a challenge again.

The hospital didn’t have record of the labs that had been drawn on Thursday, so they were about to draw labs again when we asked them to check for those results. The nurse was able to track down the results, and they ordered the chemo at about 11am. I found this kind of ironic because getting the labs drawn ahead of time is supposed to save us about an hour and we had already been waiting an hour and a half. So, after they look at the bloodwork, it takes “about an hour” to get the chemo ordered and up to the lab. Those video games really come in handy.

The nurse told David she would wait a while before starting his IV so he wouldn’t have to deal with it for as long. So he happily kept playing his video games. He started feeling bad, so he tried to lay down, but that made it worse. He ended up throwing up a couple of times, and then said he felt much better. Mark had stepped out of the room for a minute, so he missed all the “fun”. Once his dad got back, I went down and got him a bagel while his dad sat with him.

I came back up to find only Mark in the room – no David. Mark pointed me down the hall, where David was hanging out in Katie’s room talking with her and her parents. He came down the hall and  ate half the bagel and started feeling better. Katie came in and the nurse came and put David’s IV in. Then David and Katie played video games for a while. Then they moved us to a big room they call the “fish bowl”. It’s a multi-patient treatment room, and it is painted with lots of fish. So you really do feel like you are in a fish bowl. Katie didn’t stay too long before they admitted her to the hospital. (That’s what she was waiting for. Her treatment is more involved than David’s.)

We sat in there for about half an hour before they finally started his Carboplatin drip. Mark asked me if I would like to drive David home, which of course I did, so he left after they got the infusion started. David played video games for about 10 more minutes and then he went to sleep. They gave him Benedryl before the infusion, and it was doing it’s thing. He slept peacefully through the entire Carbo infusion. The nurse came back and switched the bags. They checked his ID badge to verify his identity, but he slept through switching the bags. He slept through the Avastin and was pretty groggy even when they woke him to tell him it was all over.

He had only eaten half a bagel all day, so we headed for food after we left the hospital. The parking garage was crazy, though, so it was nearly 5pm when we left the premises. We finally made it to Panera, where David took a big sniff and decided to go to Chipotle. He ate a little bit of that, and then decided that Panera sounded good after all. So we got soup. But he decided that he needed a milkshake to settle his stomach before he could eat the soup. :o)

So, we found a Chick-fil-a and got milkshakes. And then he did actually eat his soup. And drank a little of the milkshake. Success! He hasn’t been eating very well, so I was very happy to accommodate his cravings. He joked and said he felt like he was pregnant. The cravings are sort of similar, so we had a good laugh over that.

It may sound like a little thing, but driving him home was a pretty big deal to me. My time with him is so short, and lately, he has been sleeping through just about everything. The fact that he was awake and talking – even joking – was a real gift. I miss being with him and Austin every day. Being teenagers, they are both way more concerned about seeing their friends than their parents, but parents don’t really feel that way. If you are lucky enough to see your kids every day, I hope that you can appreciate what a gift that is. It is more precious than I can possibly tell you.

Chemo Starts Tomorrow

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David made the decision to give chemo a try, so he will start that tomorrow. It will be a big day for him, but we already know that he tolerates the Avastin well, so we are just waiting to see how the Carboplatin is tolerated. He won’t start the Rapamune until a week after the others, so there should be time to adjust.

This weekend, Richard and I were able to attend a concert by some of the kids that go to school with David and Austin. It was nice to get out and support these young musicians. It was very touching to me that a number of David’s classmates came by to ask about him and inquire about when he will return to school. He is well liked and missed at school, and I hope that he will be able to join his classmates again soon.

For those of you praying, please pray that the chemo will effectively shrink the tumors and that David will tolerate it easily with few side effects. Also, please pray that his energy levels will continue to improve as he adjusts to his anti-seizure medications. I think it would do him a world of good to be able to be at school with his friends and to be able to socialize with them more.

One of the bands we saw this weekend

 

Making Treatment Decisions

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David has a lot of decisions to make as he moves forward, and it’s a lot to be on the shoulders of an 18 year old. He is a caring, conscientious young man, who almost always puts the needs of others ahead of his own. Which in most cases is a good thing, but when you are fighting cancer, you have to put yourself first. Everyone else’s needs and wants are a distant second. I worry for him because he hasn’t embraced that. He still tries to please everyone.

Because I’m worried about him making these decisions, I decided to put down my thought process for him.

It’s complicated because in the end, while this is a life or death battle for us, it is just a job to some of the hospital staff we have to deal with. Hospitals are, after all, businesses, and cancer patients represent a lot of potential income. We would all like to believe that they have the patient’s best interest at heart, but few of them are willing to turn away the potential income by referring a patient to a better facility. If you have a broken leg, this probably isn’t a critical thing, but with brain cancer, even a small misstep could cost someone’s life.

We’ve spent countless hours researching. Trying to learn, in a few months, enough to keep pace with doctors who have studied this for years. We still have a lot to learn, but one thing I do know. The hospital you should be at is the one that spends the most time working on your particular problem. If your problem is life-threatening, this is absolutely critical.

There are plenty of “nice doctors” who are knowledgeable, but if they don’t spend every day working on your issue, then they are not the right doctor for you. And their philosophy should match yours. If you are afraid to try clinical trials, then don’t go to a doctor who advocates them. If you want to try a trial to beat a difficult cancer, don’t go to a doctor who isn’t involved with trials.* (*lots of hospitals have some sort of clinical trial going on, so that alone isn’t a good indicator. You want to make sure they have multiple trials dealing with your type of cancer. It doesn’t matter if they have breast cancer trials if you have brain cancer.)

Anyway, those are my thoughts on the process. Obviously, others will have other opinions, but this is what I would suggest for those facing similar situations.

Apologies for the extra posts!

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Wow, my phone apparently had a different idea than I did yesterday. I thought I was sharing a single post from another person’s blog, and instead, it reposted nearly everything I read. The good news is: I didn’t read anything embarrassing. The bad news is: some of you may have gotten a ton of notifications about posts that you weren’t interested in at all.

I’m really sorry. I’m still not exactly sure what happened, but I’ll be much more careful before hitting the “reblog” button in the future.

In the meanwhile, the blog I was trying to share didn’t get posted, so I’m copying the link here:

http://alexandamymoore.wordpress.com/2012/01/27/with-all-due-respect-sir-i-believe-this-is-gonna-be-our-finest-hour/

I haven’t read their entire blog, but it appears Alex also has brain cancer. In any case, his post based on this quote from Apoolo 13 really sums up the attitude that Richard and I have about how to fight brain cancer. We’re on a mission.

I haven’t heard from David yet this morning, but we are anxiously waiting to hear what course of treatment he has decided on. I will fill you in when we know something.