Alabama Trip

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Well, we made it to Alabama and got to visit with a remarkable number of family and friends! We were only there for a short time, but we covered a lot of ground!

The day we arrived, I took David and Austin to see their father’s parents. They visited with them for a little while and then we went to see my mom. From there we visited my grandmother (the kids’ great grandmother) and then ended the day with my dad. It was a little crazy, but Austin was only with us for the first day in Alabama.

On Thursday morning, we met up with Nicole’s youth group and Austin joined them in their trip to Xtreme in Gatlinburg. It is a Christian youth conference, and my cousin, Dusty, is their youth leader. As much as I hated not to have the time with Austin, I knew it was a great opportunity for her to have a “normal” teenage experience.

So while she was attending the conference, which included concerts by Toby Mac, Switchfoot, Jamie Grace, Red, and others, we spent the day catching up with friends and family. David got his hair cut by a friend that I’ve known since elementary school. We had a holiday lunch with my family, a snack at our beloved Taco Casa, and spent the evening catching up with cousins and old friends. An evening of laughing, good food and games that was organized by my sweet brother and his wife (and promoted on Facebook by my cousin).

We slept in a little today and then had another quick round of visits with the family before heading out of town. We’ll spend sometime in Gatlinburg before getting the kids back to Virginia for school.

So glad to have been able to hug so many folks! It’s very fortifying. Go hug your loved ones. It’ll make you both feel better!

Holidays/Avastin #3

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David and Austin spent Christmas with their dad this year, so we haven’t seen them until yesterday. The start of our holiday with the kids was unfortunately also the day of David’s Avastin treatment, so we picked them up and drove straight to DC for his treatment.

His regular doctor want there, but the doctor we saw was very nice. David asked him several questions about the growth of cancer cells and new treatments that are coming out. It’s good to see him taking an interest in his medical care since he will be 18 soon.

David reported that he has a little bit of pain in the middle of his back, in the general area of his tumor. The doctor said that is probably not from the tumor pressing in anything but just some extra pressure on the meninges that would cause a nerve related pain. David said it wasn’t bad enough to need medication, so that’s about all that was discussed about that.

The Avastin was administered in 30 minutes this time. It went very well. David doesn’t seem to have any side effects from it so far. He gets cold during the infusion, but that’s fairly easy to deal with. Even though the Avastin went in “quickly” we were still at the hospital for quite a while because of the blood work they have to do before he can take the Avastin. Usually this is done a day or two ahead of time, but it didn’t get done this time.

After the hospital, we grabbed some food and hit the road. We are driving to Alabama so the kids can see their grandparents and some extended family. It’s a whirlwind trip, but it will be nice to see everyone.

David will have his next MRI on January 3rd. We are trying to just enjoy the holidays and trust that the new medicine is doing its job. Please pray that the Avastin works exceedingly well for David and keeps the tumors from growing.

Lastly, I want to say thanks to everyone who has taken a moment to let us know of your support during the holidays. We are so thankful to all of the dedicated prayer warriors who are carrying us through this. Blessings to you all this holiday season!

Avastin #2

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Austin, David, me, Richard, and Kinsley

Yesterday was David’s 2nd round of Avastin. I wasn’t there for it, so I’ll give you the update I got from his dad. Basically, David was pretty relaxed and everything went smoothly. He tolerated the Avastin treatment very well, which is what they expect. It took them several hours at the hospital, but that is also to be expected.

While they were there, I texted with David a little bit. He seemed in good spirits – of course, I was sending him funny stuff. ;o) He said he was focusing on getting ahead of his school assignments so he could have fun over the break. I commended him on his work ethic, and we are looking forward to having him and Austin with us for New Years.

This was the first treatment of his that I’ve missed in quite some time. When he was going for radiation, we were taking turns driving him, but that was a daily thing, and so it didn’t seem like you were missing much. Missing this visit was hard, but I think it was good for me to spend some time getting things in order in Kansas. There will be a lot going on in 2012 that I want to be in Virginia to see. Not just doctor visits, but life moments… prom, graduation, Austin’s tennis matches. It’s never been easy being this far from them, but it seems to only get harder as we are reminded how precious life is.

I’ve been talking with a friend this week who is expecting her first child. She is worried about juggling her time with a new baby. I’m not sure I did a great job of that when the kids were smaller, but I’ve learned a lot in the last year or so. This Thanksgiving, I spent time hanging out with family and friends. Our tree is up, but the only decoration is lights. I decided that I’m ok with that. I have memories that I made during the time that I would have spent decorating the tree. And the thing that was really important to me – mailing Christmas cards – was done earlier than I’ve ever done it before. I was so pleased to be able to share some recent pics via that card. It’s not much of a present, but I know it always makes me so happy to get a Christmas card in the mail. I’m hoping it will make all of those people smile when they get it.

Enjoy your holidays. Treasure your family and friends. Soak it up. This is the good stuff.

The New Path

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It’s been a whirlwind few days. I always regret not writing daily during these times, but it seems there is so much to do that writing here is the lowest priority. Not that I don’t appreciate the outlet, but just that it seems a little self-indulgent.

David had an MRI on Monday right after the Thanksgiving break. His dad took him up to DC for the scan, and Richard and I flew back to Virginia from Kansas at about the same time. We all met in DC on Tuesday morning to get the results and start the Avastin treatment. We checked in at the hospital, but there was some sort of communication problem, and our doctor wasn’t notified that we were there. This resulted in a longer wait time than normal, but they were very apologetic when they got to us.

The nurse went through the normal round of questions, and David seems to be taking more of an interest in his care and treatment. When the doctor came in, he repeated a few of the questions and added some new ones. He started asking David about back pain, and since the MRI was on his spine, I assumed we were in for something new. Sure enough, when he got around to going over the MRI results with us, he told us that David has a growth in his spinal column around T10. (That’s near the middle of his back.) It isn’t causing any problems for David, and since the spinal cord is a touchy area, they recommend leaving it alone. The treatments that David receives to fight the brain tumors will fight this spot, too, since it is almost certainly the same type of tumor.

Not sure if I have ever mentioned it, but tumors that begin in the brain “rarely” metastasize beyond the brain. So no one had been looking for this type of spread. But our very intuitive doctor decided to do a spine MRI because David’s new tumors were in the ventricles – an area known to cause spread because the fluid there is the same as the fluid in the spinal column.

So our precious boy who has a “rare” type of brain tumor also has the “rare” condition that it has spread. When a different nurse told us later that the side effects of the new medicine were “rare”, I just laughed and told her that’s the world we live in. Then I made her explain what those “rare” things are so we can be prepared if he is once again the “rare” one.

I jumped ahead a little, so let me go back to the doctor. He stayed with us and answered all the questions we had at the time. (We had more later and emailed for more details. They’re really good at getting back with us and making sure we are comfortable with what we need to know.) We are exploring options for radiation or gamma knife on the spine if it is needed, as well as some new clinical trials once David turns 18 in January.

We finished with the doctor and went to the special “pods” they have for chemo & related treatments. David’s treatment isn’t technically a “chemo” but it is administered via IV like a chemo would be, and so we are treated in the same area. It was a pretty draining day to that point, and he had a little trouble with the IV stick. Normally, he manages those things just fine, but this time he got nauseated. The nurse gave him some time to rest and feel “normal” before we started the Avastin, so the process was longer, but I think it was good that he had the chance to recover before they started the drug.

He was pretty tired. All of this is mentally exhausting, and he has been carrying his full load at school (dual enrollment English, Physics, and other advanced classes). As he was relaxing from the IV being started, he fell asleep. He woke up for them to take his vitals and start the Avastin, but slept through most of the Avastin infusion, which took 90 minutes. To add a little insult to injury, he had his flu shot once the Avastin was over. As always, he was very polite, but not as many jokes, despite the best efforts of some good friends who sent us with a stack of silly cards to be opened at different intervals throughout the day. We had some chuckles, but it was definitely a tough day.

When his treatment was over, he was clearly tired, but still wanted to go out to eat. It was getting pretty late in the day by this point, so we didn’t seek out a place in DC. He has several restaurants up there that he would like to go to, but to avoid traffic, we went to our favorite restaurant, Mike’s American Grill. We all ate a lot less than normal, but the food was as good as always. We ordered some key lime pie to take to Austin since she didn’t get to go with us that time.

David didn’t seem in the mood to talk, but was clearly not his normal self, so I rode in the back seat with him back to Fredericksburg. Richard was a good sport about “chauffeuring” us. We watched (mostly listened) to Straight No Chaser’s holiday DVD. They are an a cappella group that David really likes. We dropped him off with his dad, and I’m told that he showered and went straight to bed.

He and Austin got a later start the next morning, but other than that, things are pretty “normal”. Mark, Richard, and I met with the counselor and nurse at the school to make sure they all know what’s going on with David’s care. David is very well liked at the school, and it always makes me feel good to know that so many people care about him and Austin. The counselor even told us that though they have had many kids with cancer through the years, none of them have been as positive as David. She said that David is known around school for his positive outlook and friendly personality – not because he has cancer. That was good for me to hear. I know he doesn’t like to get attention because he has cancer, and it sounds like that is never the first thing people think of when he comes to mind.