Radiation Continues

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David has been tolerating this round of radiation very well. He has had some different people driving him to appointments this week, and he seems to have enjoyed the variety. There are a lot of decisions to be made in the coming days, so I ask that you pray for wisdom for David as he navigates these decisions.

Cancer thrives on stress, and unfortunately dealing with cancer is very stressful. Please pray that David will be shown a clear path and that he will find a way that will give him confidence in his decisions.

He has a lot of support around him, but it is always good to feel that love. Thank you all for praying for him and reaching out to him with words of encouragement. That is so appreciated.

Radiation Begun

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They did start David’s radiation treatments on Friday. He will be getting radiation on his spine Monday-Saturday. Hopefully, this will halt the tumor that is growing there and result in no back pain. There may be some swelling during the treatments, so we are unclear if he will get relief from the pain right away or not, but the long term results should be good on that front.

David has opted to do his school work from home over the next couple of weeks. He has been pretty tired, and it is an hour each way to go for radiation, so it is probably a good thing for him to take a break from all day classes. I know he will miss seeing his friends every day, but he should be back at school after the radiation is over.

Once they finish with radiation, we will go back up to the NIH to see what path they recommend. There is a new vaccine that is becoming available up there that sounds VERY promising, but the doctor warned us that only about 20% of the patients will qualify for it. We are prayerfully asking that David be one of those patients. We would be grateful if you could direct your prayers toward David qualifying for this vaccine and that it is indeed as promising as it sounds.

My last bit of news for today is that the Spotless Mind kids have gotten the ok to have a concert at a small venue in downtown Fredericksburg. There are some local bands that have agreed to play, and we are excited for a cool fundraiser that the kids will be running. I don’t have exact details yet, but I will share them as I get them. You can also “like” their group on Facebook: http://www.facebook.com/SpotlessMindVA

 

18th Birthday

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***I apologize, but this post apparently didn’t make it past the “draft” phase. It should have been posted in 1/17/12.***

David turned 18 his past weekend. My sweet boy is legally a man. In the world of health care, that means a lot. Not just another day on the calendar, but now he can legally be involved in all of the decision making about his healthcare and life. It’s an exciting and scary time. He seems to be both excited and a little scared, but I see his confidence in his own abilities growing every day.

We have had a good weekend with David and Austin. We started out with a trip to Dave & Busters in Richmond, which included a visit to the Cheesecake Factory. David loves it there because he can get orange chicken and mashed potatoes together. We had a great time with them and their friends.

Saturday was mostly just relaxing. Austin and our friend, Cat, got some decorations decorated Cat’s house while her mom made a special birthday dinner. Cat and Brian (two very close friends of David) and their families helped make it a really special night.

Then on his actual birthday, we went to the Udvar-Hazy Air & Space Museum and watched Mission Impossible in their IMAX theater.

It was a great weekend, an we were thrilled to have such fun with both kids.

Tomorrow (Wednesday) we head to the NIH to see what they recommend for treatment. Please pray that we will find a great treatment that David will qualify for.

Never A Dull Moment

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Well, today didn’t go as planned. Surprised? We were, but I guess we should be getting used to the unexpected by now. We arrived at the National Institute of Health (NIH) a little before 9AM for David’s appointment. David and his dad took the Metro into the city, and they arrived just ahead of us. Richard and I drove up, and were initiated to the NIH procedure… metal detectors and vehicle search before entering the compound. It wasn’t the standard routine, but no particular hardship.

We entered the building and were registered and sent upstairs to the clinic. Staff members were friendly and helpful. After a reasonable wait upstairs, David was called back for vitals and then led to a treatment room. We met with a nurse practitioner who asked us all the normal questions. David had been having some issues over the last week or so that we detailed to her: nausea around meal times, short periods of time where he seemed to stare into space and felt “spaced out”. She felt that these were most likely “absent seizures”. A type of very mild seizure that is easily dealt with and has no particular reflection on the state of his disease. (It doesn’t mean that he is better or worse, it’s just something that happens sometimes with brain tumor patients.) The doctor later confirmed this diagnosis, and David will get some medication that should make him feel more normal.

After visiting with the Nurse Practitioner, and eating some very greasy pizza, we were led to a conference room to meet with the Oncologist.  He seemed very knowledgeable and he was very concerned about the spot on David’s spine since it has been progressively causing him more pain. He recommended that we seek immediate radiation on his spine, and in fact, thought we should table all discussion of the clinical trials until after we have dealt with this spinal tumor.

We were a bit stunned because we hadn’t expected that, but it made sense, so we scheduled a consult with the radiation oncologist at MCV/VCU. The doctors at NIH gave a thumbs up to MCV as a more local hospital for David that could still do high quality radiation. They believe it will be a 2-3 week regimen. At the end of that regimen, we anticipate being able to start a clinical trial, though, as of yet, that trial is undefined.

After leaving the NIH, I placed a few calls to some old friends in San Diego who put me in touch with other friends I had lost touch with. These friends are all involved with the world of spinal cord injuries and had some expert advice to share. Bill, one of the PVA guys I worked with, put me in touch with Dr. Gerhart, who is now the Chief of the SCI Unit at the VA in San Diego. He told me that he had seen some successful spinal radiation to deal with tumors and felt that we were probably heading in the right direction. Another good friend, Sharon, put me in touch with the former Chief of the SCI Unit at the VA in San Diego. This doctor, Dr. Szollar, was also very helpful because she is a brain tumor survivor as well. I am so grateful to all of them for the time they took to help me navigate these waters. I shared the info with David’s dad, and I think we are heading in the right direction.

David seems to be taking everything in stride. He is always positive, and he chose to do the radiation. He is eager to fight this thing, and is so much braver than I think I could ever be. I’m so proud of how involved he has become now that he is empowered to make these decisions. It may just be a few days difference, but from 17 to 18 has made a significant impact on him.

David still feels pretty good, and I think he will feel better as we get some new medication and the radiation eases the pressure on his spine. We appreciate all the prayers being lifted on his behalf. The road seems to have a lot of twists and turns, but we’re still going strong.

MRI Results

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I’m going to start with the “summary” for all those who don’t want the long account of what has happened over the last few days. In short, we got David’s MRI results today, and he has had some new tumor growth. There are a total of four tumors that they are watching. Two have remained stable – the one on his spine  and one of the “new” ones in his brain. The original tumor site has stayed mostly the same, although they thought it looked a little “puffy”. (Yes, that’s the term the doctor used.) The last tumor has grown. It is still quite small, but we weren’t happy with the rate of growth – visible to the naked eye. They recommended stopping Avastin so that David would be eligible for more trials, and because it didn’t seem to be doing enough good at this point. (They left Avastin as an option for later, possibly.) They recommended that we go to the National Institute of Health, just a little further up the road, and see if David qualifies for one of the two trials that we are looking at there. We have an appointment there on Wednesday.

Ok, now for the longer version.A few people have asked why David had to have 4 MRIs. That was a new one for me, too, but apparently, the spine is done in 3 sections. As it turned out, they were able to do the brain scan and the 3 spine scans all at the same time. So that was good for David. After the MRI, he did go have lunch in DC with his dad, stepmother, sister, two step sisters, and their old neighbors. Jose Andres made a special menu just for David and really gave them all the royal treatment. David had a great time.

Today’s doctor visit was longer than normal because we spent a lot of time talking with the doctor about options. David asked a lot of good questions, and made some creative suggestions about how to deal with the cancer. The doctor was very patient in explaining everything… even why David’s well-intended suggestions wouldn’t work.

The nurse assigned to David had fractured some of her fingers while she was out running. This prompted David to show them his weird finger trick. (He is double jointed in every knuckle.) The doctor sort of cringed and looked away, making everyone chuckle. It is a sight to behold, but I’m sure they’ve seen much worse!

Anyway, we talked about the options open to David, and we all have a little more research to do. David seems to be more eager to be part of the discussion now, so I am thankful for that. It seems there are so many things on the horizon that could be the answer, but we are really in a race against the clock. I know God put us in the race, though, so He’ll see us through it.

I’d like to end with an update on Spotless Mind. The kids had a meeting last Thursday, and two representatives from Accelerate Brain Cancer Cure (ABC2) came down to meet with them. The answered a lot of questions about brain cancer, research, and fundraising. They are excited to work with us as we pull together some little fundraisers in Virginia, and we have already signed on as a team to support their Race for Hope in DC. We will volunteer and some of the folks from our group will run the 5K. We are excited to be partnering with such a well known organization, and I think the kids will learn a lot from working with them.

The race will be May 6, 2012 in Washington, DC. If you want to sign up to be a part of our team or help our fundraising efforts, you can use this link:

http://www.braintumorcommunity.org/site/TR/Events/RFH-DC?px=2903208&pg=personal&fr_id=1810

A couple of days after the Spotless Mind meeting, the group received a very generous donation from a most gracious donor. You see, this was his second donation. When he found out that we had passed along his first donation (because we haven’t attained 501(c)(3) status), he sent the kids another check so they could still pursue their non-profit designation. I would shout his name from the rooftops in thanks, but he wouldn’t want that. So I will just say that in my mind, he is a saint. His generosity is not new to me, but this gesture made me teary eyed and speechless. I still have no adequate words to thank him.

Thanks to all of you for your prayers and positive thoughts. We feel the love from all of you in so many special little ways. From silly photos to make us smile to rides to/from the airport, we have such a supportive “family”. Nothing can make this journey easy, but it is easier with the help of all of you.

 

MRIs

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Please excuse my lack of updates. I’m not in Virginia right now, so it’s harder to get information. David’s dad got his MRIs moved to a hospital in Woodbridge, which is closer to where they live. David had the first two (of four) today. He will have the other two on Monday. We most likely won’t hear any results until his doctor’s appointment on Thursday.

David is starting his birthday celebrations early with a trip to DC to have lunch with Jose Andres. His dad, stepmother, and siblings all went with him. I haven’t heard the full report yet, but it looks like Chef Andres made a special menu just for David. I’m sure he was thrilled.

Thank you all for your continued support and prayers.

No MRI

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Due to a strange set of circumstances, David was unable to get his MRI on the 3rd. David’s dad reported that the cooling system went down for all 3 machines they have. The engineers had no explanation as to why so they asked us to reschedule.

I haven’t heard back from David’s dad yet about the new MRI date, but it should be very soon. I’ll post more when I know more.

Quick Update

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Our thanks go out to all of you who are praying about David’s MRI today. Just wanted to let you know that we won’t know the results right away. It will be a few days before they let us know the results because there isn’t a doctor’s appointment scheduled with this MRI.

I think we are all a little more concerned because of the new spots, and David has shown some signs that he is worried. I can’t believe how positive he has been throughout everything, and he is still the strongest person I know. I’ll keep you all posted as we hear things.

Gatlinburg

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We had a nice visit to Gatlinburg/Pigeon Forge, TN. It was unseasonably warm there, so we didn’t do any cold weather activities. Instead, we wandered through the shops and tested ourselves against the mirror maze. It was a low-key visit, as Austin was tired from her youth group activities and the rest of us were tired from traveling.

On New Year’s Eve, we received news that Richard’s dad, Ken, is in the hospital. Richard’s brother Brad said it succinctly on Facebook, “he has a 2 cm aneurysm in the basilar artery in his brain. He’s 87 years old, moderate health, and we do not have any viable options to address the aneurysm. He is alert with no pain or other significant issues. He will be moved to a regular hospital room tomorrow and likely released a day or two later to return to assisted living. He has been told what is going on but may not comprehend the severity of the situation. Prayers appreciated.”

We are thankful that he feels pretty good, but this is not something that is expected to go away peacefully. It’s hard to focus on living in the moment with this kind of stuff looming over your head, but that’s what you have to do.

“…For I know the plans I have for you,” declares the Lord,
“Plans to prosper you and not to harm you, plans to give you hope and a future…”
– Jeremiah 29:11

God has plans for us. Wonderful plans. He wants us to prosper and have a future. With faith in Him, we do have a future. Both here on Earth, and later in Heaven. It’s the Heaven part that is hard for us to grasp. I think that might be by design. Afterall, if we fully comprehended the awesome wonder of Heaven, it would be hard for us to focus on living this flawed life here on Earth. We appreciate and love our life here because we haven’t yet experienced the glory of life with God.  We grieve for those who are lost, not for their future, but for our own. We love them and want them here with us. But the actuality is that they have gone on to a better place. A place that we know is better, but isn’t completely real to us yet.

I have loved ones that are there already. I miss them every day. Almost all of them left us far earlier than anyone expected. And this past few days spent with family has made me miss them with a keen reality. But one funeral stands out as I think back over my missing loved ones. One funeral planned by a 21-year-old who had just lost his twin brother to a senseless violent act. He could have reacted with anger and hate. Instead he planned a funeral service full of celebration for the brother he loved so much. I heard a song for the first time that day. It’s chorus is “better is one day in your courts than thousands elsewhere.” Better is ONE DAY. I find immeasurable comfort in that.

I pray that none of us will lose loved ones in this new year, but if we do, I pray that kind of faith and comfort.