Shunt Day

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It’s just after midnight so technically, today is the day David will have his shunt put in. He reports to the hospital at 8:30 am. David went back over to his dad’s house Tuesday night. I believe Susan’s boss was bringing them all dinner. His dad will be bringing him to the hospital.

Please pray for the shunt placement to go smoothly, with a quick healing process. We want the wounds to heal easily. Pray that the surgeon will have an easy and effective path to place the shunt. And of course, that David will have little to no discomfort.

Thank you all for your unending prayers. Read a great quote from Joyce Meyer today: “The opposite of fear is faith.” I pray that when you face fearful situations, you will be buoyed by your faith.

Good weekend

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David did, indeed, get to go home on Friday, but it was far from the “before noon” time we had been promised. We had hoped to make it to Austin’s tennis match, but that wasn’t to be. David was so exhausted from the stay that he fell asleep almost as soon as we got home. It really is exhausting for him to be there, and I’m so thankful that he got a quiet weekend at home.

Austin played her first varsity match, a doubles match, with he friend Maddie, and they won! It was a tough fight and at one point they were down by 3 games, but they came back and won 11-9!

David was feeling much better on Saturday, so we went to the movies with some of his friends. (They graciously allowed me to tag along.) we watched the Hunger Games. I wasn’t expecting it to be quite as dark as it was, but it did have some themes that would make teens think. A far better use of their time than Twilight, I’d have to say.

After the movie, Cat came back to the apartment, and Brian met us here. They all played video games and watched another movie. David really enjoys having them around, and I disappeared to my room so they could have some privacy. It was a good chance to watch Larry Crowne, the Tom Hanks movie. It was cute, but it made me miss Richard.

Sunday, we slept in, and then David did some homework. Then we went shopping and got stuff to make dinner. We tried a new pot roast recipe, but neither of us were that impressed.

Then it was off to church. Yes, you read that right. Church! We haven’t been in quite some time, and it was nice to be around some of the many people who are praying for David. We saw the Bowles’ family there, and went with them to Carl’s (a local legendary ice cream shop) for ice cream. Then it was home to chill and go to bed early(ish).

Tomorrow will be schoolwork and a trip to the vet for Cooper. He has a little spot on his chin we want to have checked out.

Thursday is looming over our heads a bit, but it’s not too bad. I hate the thought of him going back in the hospital for anything, but at least this should make him feel better on a more long term basis.

Have a good week everyone!

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Home?

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Yesterday went exceedingly well for David. He felt good, and he had no nausea for the first time in quite a while. He had a number of visitors. During the day, his stepmother and her mother and stepmother came by. In the evening, he was brought his favorite orange chicken by Catherine and her mom, Rebecca. He enjoyed spending time with all of them.

Since he was feeling well, I was able to convince him to use his time to get some homework done, but he did manage to watch an episode of burn Notice and play countless rounds on his video game.

I’m making this quick entry at 5:45 am, NOT because I am a morning person but because we were just woken up again by hospital staff. Every two hours they wake David, and thus me, to make sure he is doing ok. And by wake, I mean they literally shine a flashlight into each of his eyes. This isn’t to be mean. They are watching for pupil dilation because any change would be something to put them in alert. We are clear – again – and there are still murmurs that we should go home today. Yea!

I will keep you posted, but please be patient. I may have time to post a quick message to Facebook before I post here. If you want to be added as a friend in Facebook, please let me know. (if I don’t personally know you, you may need to let me know that you are friending me because of the blog).

Busy, but not in a good way

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The last couple of days have been busy, to say the least! Over the last few weeks, David has had a lot of problems with nausea, but very little vomiting, all things considered. He woke up yesterday throwing up, and had further problems during the day. We were worried that there may be some change in his condition, so they scheduled a CT scan.

The CT scan looks similar to the last MRI, meaning there hasn’t been a great deal of change. However, even a slight change at this point could mean fluid backing up, which would give David more headaches and severe nausea. It could be life-threatening if left unattended, so of course, we were keeping a close eye on things.

David wanted to get opinions from the doctors that he trusts – one in DC and one in Richmond. So this morning, I drive him to DC to meet with Dr. Hwang, and this afternoon, I drove him to Richmond to see Dr. Tye. Ultimately, they all recommend doing something to alleviate pressure, and Dr. Tye is the neurosurgeon that would handle that operation.

At this point, it looks like they will do a shunt, although it is possible they could do a different procedure. To protect my reputation, I will not attempt to spell the name of that procedure, but it basically is making a small hole so the fluid can escape to another area in the brain.

For the moment, they have admitted David to give him some of the fluids he lost from throwing up and to get him on a more powerful steroid to try to keep the swelling down. Ideally, he should be off of Avastin for a month before they put in a shunt. They could do it at three weeks, which is where we are today, but a few days longer would be better.

We are being very well cared for by friends. Jennifer and her dad, Wes, brought some overnight stuff down from the apartment. Critical stuff… Like David’s new Yogi Bear DVD, and less critical, like toothbrushes. And our friend Kathleen brought Chipotle so David didn’t have to eat hospital food. He’s already sworn off the milk because it is not organic! And little Cooper is spending the night with the Armer family. We are truly blessed to have such wonderful support.

We will let you know how tomorrow goes, but for now, David is comfortable and enjoying a game on his iPhone. (And no, that doesn’t mean he would use that device to reply to a text. He seems oblivious to the fact that it can do both!)

Oh, speaking of texting, we are not supposed to use our cell phones in this unit. We can text, but not call. I will also try to check Facebook periodically. Thanks for the prayers and positive thoughts! We love you guys!

Who Needs Sleep?

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Me. Lol, but instead I’m writing this way-overdue blog post. Thanks for waiting patiently! I’m so far behind, I’m not sure where to start, so this may be a little random. I’ll try to go chronologically – starting from the last post – and also by subject. So let’s start with the obvious health stuff.

We did take David up the NIH, and he saw an oncologist in their brain tumor clinic. David’s normal doctor, Dr. Fine, was out, and we didn’t want to wait the 2 weeks until he is back in clinic. They were not confidant that David’s tumor(s) have grown during this treatment period. That’s a little confusing. They didn’t say that the tumor(s) hadn’t grown. They thought that there had been too much time between the “starting” MRI and when treatment started, and that you couldn’t decisively say that the growth, which is slight, hadn’t happened in the time between the MRI and when David started chemo. They wanted their entire tumor board to review David’s case, so that will be happening tomorrow (Tuesday). For the moment, David is “just” on his seizure meds, a steroid, pain meds (which aren’t needed in large doses), and stuff to help his stomach handle all of the other meds.

We, of course, had to stop at Mike’s All American Grill on the way back to Fredericksburg. We missed Austin’s tennis match, but she won! She’s getting to be quite good, and her matches are fun to watch. It was getting kind of late, so David spent the night with us. The next day was not a great one. David had a headache and was pretty light and sound sensitive. He went back over to his dad’s and rested most of the afternoon/evening. He was feeling much better by Friday, which was the day of the Spotless Mind concert, so Austin and David met us at the apartment to get everything together. We took separate cars to the concert so David could leave early if he wasn’t feeling well. Psh. He was the life of the party until the end of the night! We saw so many of the kids friends there, and some dear friends of ours came as well. Even had a friend drive an hour and a half to be there! What a blessing they all are! We also made some new friends that night, and everyone –  despite their own challenges, found ways to support the cause.

There were a couple of snags with the concert, but again, friends stepped in to help, and it turned out to be a big success. They raised over $1,000 and are so excited to do more. Most of the talent have Facebook pages and YouTube videos. Here’s a couple if you are interested:

Rebecca Simpson

Allie Wheeland

Monday Morning Hiatus

Serenade the Cityscape

Quite a lot of talent who donated their time to help the cause. Most of them are classmates and friends of the kids in Spotless Mind, a few of them are active group members, and I’m pretty sure a couple of them had never heard of us before. But they all willingly played the show for free so that we could raise money for brain cancer research. They are awesome, awesome kids, so please give ’em a listen if you have a chance. And go like the Spotless Mind page on Facebook if you want to know more about what they are doing. We will be ordering t-shirts soon, and they have a cool Hunger Games tie-in.

We were all pretty beat after the concert, but we did have a nice weekend with David and Austin. Saturday, Austin and I went shopping for bedding for her and David for the new apartment, and we also got her a new tennis outfit and tennis shoes. We watched a movie at home and had a fairly early night. Sunday, we all went out and picked out stuff for the kids’ bathroom and David went to the movies with Cat and Brian. Austin went back to her dad’s to get the last of her homework done and get ready for school. David is staying with me for the week, so he and his friends came back to the apartment and hung out for a while. It’s so good having them around. :o)

David did some schoolwork today and he has his tutor tomorrow. He is at school for a few classes a week, but he still isn’t back for a full day. He is making great progress, though, and is still enjoying *most* of his schoolwork.

Thanks go out this week to Teresa, who rearranged her family’s schedule to accommodate us when we needed some help. There isn’t a day that goes by that we aren’t reminded of how blessed we are. Yes, cancer sucks. Nothing will change that. But friends and family empower us in the fight, and we won’t put our hands up in surrender.

 

MRI Results

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Well the short and sweet version is that we didn’t see any tumor shrinkage on the MRI today. They only had the head scans to look at – they took pictures of the spine, too, but those won’t be loaded into the system until at least tomorrow.

The MRI on his brain was reviewed by the oncologist at VCU. We are waiting to hear from the neurosurgeon there to make sure he agrees with the reading, but basically, there is only slight change in most of the tumors. In some instances that change could be a result of the Avastin making things appear differently on the scan, but it could also be growth. There is some “wiggle room” on most of the tumors, but there is one in the 4th ventricle that could cause some real problems if it gets any bigger. I think I might have mentioned before that it is the one that could block the flow of cerebral spinal fluid (CSF) because it is in that passageway that leads from the brain to the spine. Needless to say, I am very concerned about that.

I talked to David about it a little bit, because he always takes the news with hardly any reaction. He said, “Mom, what good is freaking out going to do? I just listen and then figure out what I need to do to fight it.” That’s my boy! But it is hard not to get frustrated. For me, anyway.

Now that you know the important stuff, I’ll back up and tell you some of the “fluff”. David is spending the week with me, and he woke up in a great mood. He made cinnamon rolls for himself for breakfast. (I offered, but he was happy to have some kitchen time.) Then he and I drove down to Richmond early to try out a new restaurant called “Hogshead”. It was a BBQ place that he was ready to try when we left Fredericksburg. Unfortunately, by the time we drove the hour to get there, the only thing that sounded good were the sweet potato fries. So he had that and some hush puppies. He wasn’t really queasy so much as feeling “weird”, so I’ve just been letting him eat whatever sounds good. It makes for some odd combinations sometimes, but if he’s eating, I’m happy. He’s lost a little weight lately, and he’s a pretty skinny guy to begin with, so there’s not a lot of room to play with on the weight.

We drove over to the hospital and only had a short wait before they took him back for his MRIs. They do those in the basement at VCU, and there is no cell or internet signal down there. Just before we headed down, we got a text that our friend, Kim, had given birth to a 9 lb. 15 oz. baby. But they didn’t tell us if it was a boy or girl, and we were in the basement with no signal!! We would just have to wait to find out more info. He had an easy time with the MRIs. It took a couple of hours to do the brain and the spine, but he’s a trooper.

When we came back upstairs after the MRIs, we learned that Kim’s baby was a boy, and she named him David Alan Young. David was honored to be part of the reason they chose that name and said, “That makes me David Sr.” I laughed and told him I wasn’t sure it worked quite that way, but he was already making plans to conquer the world with his new sidekick.

Ok, it may be a little while before baby David is conquering the world, but it is never too early to plan!

The doctors at VCU will be talking to NIH to decide on the next course of action for David. We have an appointment at NIH on Wednesday to let them examine David in person. He still feels pretty good, with the exception of fatigue and some nausea from time to time.

If you have a few minutes to pray, please pray that we will find an effective treatment for David that will work quickly in his system to hold these tumors at bay. Pray for the path to be clear so that we will not question what action should be taken. Pray for his continued strength and that he will continue to have no serious side effects or symptoms.

We praise God for the effectiveness of his treatments so far. We know that not everyone is given the time that we have been given, and we hope that we are using it wisely and to the glory of God.

Ok, a couple of quick updates on other things. First, Austin has started her tennis season at school and is doing well. Her coach is a great mentor for her, and we are very thankful to have such a caring person in a major role in Austin’s life.   And second, we missed a Spotless Mind meeting tonight, but the kids have their first “big” event planned for next Friday night (3/16). They are holding a concert in downtown Fredericksburg and have handled 99% of the planning themselves. I haven’t been to a meeting in a while, and I’m so proud of them for pulling this all together. I can’t wait to see it! A few of David’s friend are playing in one of the bands, and there are two other acts that are playing as well. Should be a great time!

Thanks for being out there and sending your love. Whether it’s a text, a message on the blog, a card, or a “like” on Facebook, it helps to know we aren’t in this alone.

Upcoming MRI

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Well, in a pleasant change of events, I’ve had David with me in the new apartment since Sunday night. His dad has decided to go back to work, and has agreed to let David stay with me more often. It’s been good getting into a routine with him.

On Monday, we got off to a sluggish start. He doesn’t do too well with mornings these days, but we got out of the house for lunch, went to Giant to fill a prescription, dropped off recycling, and went to school to sign some papers. Tuesday was much the same. We started with lunch, then to the library to work with his homebound teacher. They both felt like a lot was accomplished so that was a good day! Also, we checked out a cool Star Wars craft book that we may have to explore in our “down” time.

Today, I’m still waiting for him to gather the energy to face the world. The plan is to go to school to go to his 4th block class… 3rd block if we are lucky, but that’s not looking so good at this point. His best hours are the evening, but unfortunately, most everything with school is over by 2:15 pm.

Tomorrow, he goes back to VCU for an MRI to check the status of his tumors. We haven’t been seeing any new symptoms, so I’m praying for some shrinkage. I’m not sure when we will get the results from the MRI, but it probably won’t be tomorrow. I’ll keep you posted. We’d sure appreciate some extra prayers for a good scan. We are ever mindful of God’s presence along this path, and we know that so many of you are lifting us up. Thank you so much for that.

Busy bees

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We’ve all been running this week, so I’m gonna backtrack a day or two.

I’ve been running talent show rehearsals this week in the evening, and it has been very rewarding to see the hard work these teens have put into their acts. I love being backstage, so this has been a really great distraction for me. On Wednesday, I took David to his appointment in Richmond for his Avastin infusion. It is technically a one hour infusion, so I always optimistically think we will be in and out in a couple of hours. VCU had different plans. We waited about an hour and a half before they started the infusion, and then David felt a little dizzy afterwards, so he was kept for a little while for observation. Everything was fine, though, and we returned to Fredericksburg. Mark met us at the school so I could catch the last half of talent show rehearsal. David is staying with his dad this week, but I am very excited to report that he will be spending the week with me next week. :o)

While David and I were at the hospital, Austin was participating in Challenge Day at school. I had been unaware of this program, but she seemed very excited about it so I looked it up. Here’s the link if you are interested:

http://www.challengeday.org/

It is a great program that essentially challenges people to be the change they want to see in the world. Austin really enjoyed the program and I jumped at the chance to be an adult volunteer for the second day of the program. Austin wasn’t there (it’s a single day for participants), but a number of David and Austin’s friends were there. It was really a special day, and I am so thankful for these really thoughtful young people.

I’ve gotta say, though, its been a while since I’ve been this tired. It was an emotionally draining day, and I’m glad we didn’t have rehearsal tonight. Tomorrow is the show, so tonight I’m resting up and trying to get ready.

The kids are going away for their step-sister’s birthday this weekend. They are going to the mountains, and I’m sure they will have a great time. David is still having fatigue, but it’s good for him to get out and do some things. I’m prayerful that his energy level will return soon.