Kinsley’s Visit

David's Journey

We were very happy to pick Kinsley up at the airport last night. She flew in to spend a little time with David. She is only here until Tuesday, so she won’t even get to see Austin, but a quick visit is better than no visit at all. (Austin had a tennis match out of town and won’t be back until late.)

David threw up right before we went to pick him up, but he was good for the rest of the day. We took him to the eye doctor to get glasses. He has had some vision changes, and it’s a little hard for him to put his contacts in so we got him glasses.

We spent the night getting dinner (Panda Express, of course!) and watching movies. David and Kinsley both like silly movies so they just chilled and watched some comedies.

We took David back to his dad’s to spend the night, but hopefully we will be able to spend some time with him again tomorrow. He is a little unsteady on his feet, but manages pretty well. He uses a walker some of the time, but he is staying pretty mobile.

Tomorrow at his high school they are having brain cancer awareness day. It is the first day of Brain Cancer Awareness Month, and a lot of David’s friends made grey t-shirts to wear. He has really made a positive impression on a lot of people, and it is heartwarming to see them rally behind him and this cause.

Graduation & Prom

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David’s vomiting ended just after my last post and he spent the next day sleeping. That evening, he had his graduation ceremony at a local restaurant, Amy’s Cafe. Both of my parents and their spouses were still in town, and a large group of family and friends from the area joined us to celebrate this milestone with David. He chose to use a wheelchair for the evening because standing saps his energy pretty quickly.

He went home with his dad after the festivities, and has been there since then. Richard and I have gone by to visit him several times, and on Saturday we were able to help him get ready for prom. They had a nice meal at Mark’s house before being given a ride to prom in Jamie’s Grand National. David has always thought that was a cool car, so he was happy to show it off to his date. They only stayed at prom for about an hour before heading back to Mark’s to watch a movie.

David has been feeling mostly ok this week, but he did have a bout of vomiting today. I always wonder what to share here, and I hope that isn’t too much. It’s just that a lot of things with this disease sort of sneak up on you, but vomiting is pretty clear cut. The “sneakier” things are fatigue, memory issues, and muscle control… They seem to get a little worse each day.

People tell me constantly that they always see David smiling. That’s because he is almost always smiling. It was very hard for me to see that this week, in spite of the cool things going on, his smile seemed a little dimmer. There are subtle changes in his face that are starting to change his appearance. Fatigue, muscle control, and even steroids are taking a toll on that beautiful smile. It’s so hard to watch. But inside, he is still my beautiful, sweet boy.

David is set to start the new chemo tomorrow. We are praying that it will be effective against this horrible disease. In the meanwhile, we prepare for the Race for Hope in DC on Sunday. It seems a little crazy to be doing that when so much is going on with David, but we know that every day we have to push a little closer to a cure. Cancer doesn’t sleep. It’s insidiously growing all the time. So we have to fight it all the time.

Our family just after David received his diploma.

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David with his prom date.

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Helping his date out of the car.

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Home

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David was released from Children’s National on Saturday. To celebrate, we took him to America Eats, a “limited edition” restaurant by Jose Andres. Chef Andres thinks a lot of David and proved it once again by pulling out all the stops to give David a wonderful experience.

David’s Aunt Donna, Uncle Danny, and cousin, Nicole, were able to join Richard, David, and I for what we thought would be a quick lunch on the way back to Fredericksburg. We arrived a bit after 1:00 pm, and I think it was well after 4:00 pm when we left! We had hush puppies, doughnuts, boneless wings, fried chicken and shrimp étouffée, all before they brought out our entrees. (All we ordered was salad and entree.) David had grilled oysters as his “salad”, and then we got our entrees. Everyone was quite pleased with their entree order. We were beyond stuffed, but then they brought us dessert! They brought out one of each dessert, so we could all sample everything. Then we had truffles and chocolate bacon after dessert. It was a ridiculous amount of food, but we ate as much as we could!

When we got back to Fredericksburg, both sets of my parents were there waiting for us. We quickly unloaded and then the homecare nurse and social worker came over. They are a homecare/hospice company. Not exactly the way we would like to have come home, but it’s better to have them and be home than have to stay in the hospital.

They were exceedingly nice and professional. We finished with them and then said goodbye to Danny’s family. They had to start their drive back to Alabama. David was already in bed before they left.

Sunday, David had a bout of vomiting and then proceeded to sleep most of the day. He got up in the late afternoon and watched some tv with his grandparents. David’s dad and Austin stopped by to drop off some things, and were here when David’s principal came by to see him.

Everyone left after a little while except Austin. She stayed and watched tv with David for an hour or so. She has school and a tennis match today, so she didn’t stay too long.

At the same time they were watching tv, a group of friends gathered to pray for him at Jimmy’s church. David likes attending there when he can, but yesterday he was too tired. It was so nice to know he was being lifted up in prayer by people who love him so much.

That reminds me that he was also buoyed earlier in the week by two different sports teams. All the way out in San Diego, four friends of David’s wore his initials on their lacrosse helmets during their game and here in Virginia, the girls softball team put his initials on their wristbands. Just another way of saying, “I love you, and I’ve got your back.”

Today started with another bout of vomiting. He is resting now, so I am hopeful that it was just a morning issue and won’t plague him the rest of the day. Even while sick this morning, he continues to show us that he is so kind. Richard put his hand on David’s shoulder and told him that he wished he could take this from him. David covered Richard’s hand with his own and said, “I wouldn’t let you.”

David has always been a joy, but in his most difficult times he has proven that he is far more compassionate, more thoughtful, more caring than most of the rest of us put together. The fact that he is suffering like this just proves that life is the ultimate in unfair, and that doing good works aren’t enough. David has an unwavering faith in God, and I feel I would be remiss if I didn’t mention that here. He knows God can heal him. He also knows that might not happen. Either way, he will fight until he can’t fight anymore.

The picture below is of David eating an oyster at America Eats.

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The boys with their lacrosse helmets.

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David with his aunt, uncle, and cousin just before going in to America Eats.

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The Best Medicine

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As a parent, there are few things greater than seeing your children succeed. I can honestly say that I am so proud of what my children have accomplished, though still in their teens. They have already achieved life’s biggest reward: the enduring love of family and friends.

Today there were lots more visitors for David. Three different cars traveled from Alabama with family. One car travelled over an hour just to drop off one teen. One car came with a teenage driver (scary if you have ever seen DC traffic). One mom drove a group of kids up, even though she had never met David. One person came directly from an overseas flight to the hospital. Countless texts, calls, and Facebook messages have been sent to both David and Austin. They are loved. There is no greater success.

To put a finer point on things, eleven teens came up to see David today. He was sleeping when some of them arrived, so they sat very patiently for hours before he was awake to see them. Many sat in the waiting room for longer than their visit with David.

My parents and their spouses arrived today, and so did my brother, his wife and daughter. The hospital was so accommodating, because I’m sure we were over their visitor limit.

In the late afternoon, David’s dad arranged a visit from Chef Jose Andres. David had the great pleasure of introducing him to his family, friends, and a lot of the hospital staff. We heard about another boy on the unit who also wanted to be a chef, and David took Chef Andres down to see him.

We said a lot of goodbyes to staff in preparation for going home tomorrow. There were many tear-filled eyes as they said their farewells. In under a week, they became so attached to David. And we are so thankful for their love and kindness. It’s a crazy hard situation and they did their best to guide us through it.

Richard thanked Victor, one of his fantastic nurses, for taking such great care of David and for caring, and he said, with tears in his eyes, “I wish I could do more”. That really says it all.

David was exhausted but happy as he went to sleep. That is what every day should be.

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Here are a few pics from during the day yesterday. I think David was most impressed by the St. Francis medal he was loaned by the Trail family. It is from Italy, and they just got it back from another friend they had loaned it to – who had survived her cancer while wearing it. David was moved beyond words, which is pretty impressive as he is normally as verbose as his mom. 😉

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Still at Children’s

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It is early Friday morning as I begin writing this. We’ve had a crazy week. David was kept in the hospital because the pain in his leg had steadily gotten worse, and They wanted us to be able to control in on oral meds before he went home.

On Wednesday, a combination of medicines made him quite loopy, and the effects lasted long after they should have. (One of the medicines only lasts in your system for about 4 hours.) he was extremely fatigued, and barely woke when he was visited by his step mother and Mrs. Woodside. David was having hallucinations and they lasted well into the night. Based on his last MRI, it was possible that this was all from disease progression, so the doctors started preparing us for the worst.

I called David’s dad and had him bring Austin up to the hospital. It isn’t that they thought David was about to die, but more that they thought he might be reaching a point where he wasn’t as aware of what is around him.

Austin visited and then she and her dad stayed at a nearby hotel. Richard and I stayed with David, as we had been doing. During the night, David got up three times to go to the bathroom. Each time, he seemed to be a little more steady on his feet. By morning, he seemed to be back to a pretty “normal” state.

We were all sufficiently worried about David’s symptoms to call in family and friends. David had over 30 visitors yesterday. They all arrived to see a smiling David who greeted them warmly. No hallucinations. Manageable pain.

What they did see was that his eyes don’t quite follow the action like they used to. He shakes a little now, especially when he is reaching for something. He has a bandage on his head where one of the incisions from the shunt didn’t heal quite right. Overall, though, he looks pretty good.

I wish the inside looked as good. David has visible spots of cancer throughout his brain and spinal cord. His disease is in an advanced stage. David has chosen to start a chemo regimen that is an oral medication he can take from home. We are working right now to get hospice care set up so it will be there as we need it moving forward. Once that is set, we will take him home.

Needless to say, we are worried about David. He still has the same great attitude and is determined to win even with all odds stacked against him. We take our cues from him.

Last night before leaving, his friend Brian shared some advice. He told David he only has to make it through each new day. He told him that he could do anything for 24 hours. And just wake up each morning focused on that day.

I thought that was great advice, and it was delivered in a very mature way. I am so proud of these young men and women. It gives me hope for the future, even if it doesn’t turn out exactly how I have planned.

The Godfather

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There are so many “moments” that happen during cancer treatment. Good stuff, bad stuff. It would be impossible to document everything, and I clearly don’t update as often as I’d like to. But I’ve had some random thoughts rattling around in my brain, so I thought I’d share them.

The first is that doctors and nurses have a HUGE influence on how you get through treatment. They can make you feel like a good parent or a bad parent, so to me it is critical to find a doctor that you respect, but who also respects you. And by “you”, I mean the royal “you” – the patient, the family, even the friends if it comes to that. An environment where the patient can include everyone they wish to include is so critical. This may sound like a no-brainer, but trust me, the environment can vary greatly from place to place.

The second thing is that I’ve learned I’m not a quitter. It is my nature to fight for my kids. There’s a scene in the Godfather (that I’ve never seen) that is quoted by Tom Hanks in “You’ve Got Mail” (which my family will tell you I’ve seen a hundred times). The quote is “Fight, fight to the death.”

You’ve Got Mail – Godfather Scene

They were talking about business, but it could obviously relate quite literally to cancer. I’m not sure that I want David to “fight to the death” because that doesn’t sound like a peaceful way to end time here on earth. I am proud of how he’s fought, though, and that he continues to fight, despite people telling him there is no cure for this disease.

What would any of us do if faced with something that the best medical doctors can’t fix? I don’t think you can truly know the answer to that until you are in the situation. Even now, I can’t say for sure what I would do if it were me personally. So I have to respect whatever David tells me he wants to do. It’s his life. Not mine.

For the most part, I think he has made the best decisions an 18 year old can make. He sometimes has trouble getting people to listen to and respect those decisions, and in his typical way, he sees that as his problem, not theirs.

I was going to go into a little more detail about him here, but he nixed it. (That’s what I get for letting him proofread.) He doesn’t like praise, and thinks I’ve already said too much in that regard. So for now, I’ll just say that he is kinder than he gives himself credit for.

Hospital Stay

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Yesterday was a rough day. David woke up and started throwing up. That’s not uncommon, but after a couple of times, it usually stops. Yesterday, it didn’t. He was increasingly uncomfortable so we decided to take him to the doctor. We only made it about a mile before we could see that he was too uncomfortable to drive somewhere. So we stopped at the closest hospital to try to get him some relief.

They put him on an IV with fluids and Zofran. He normally takes Zofran, but the oral version wasn’t helping. The IV did the trick almost instantly. He was having some leg pain, which they also treated via the IV.

While we were there, a number of critical patients came in. David was by far less critical, so we sat in a treatment room alone for much of the time. He slept and played games on his phone. They determined that he should probably be observed by a neuro oncologist since his shunt appeared to be working properly. They transferred him up to Children’s National in DC for further observation.

We have been to Children’s a number of times, but this was the first time as an inpatient. Let me just say that it was amazing. The rooms are quite large and have a full private bathroom. There is ample space for families to visit, and even a small table and chair set to eat or play games. The staff was very accommodating and David was quickly settled in for the night.

I have to mention, too, that the transport company, Lifecare Medical Transport, that brought him up was first class.The EMTs were friendly and made sure that David knew exactly what was going on.

He rested well once we made it to DC. It is notoriously hard to rest in hospitals, but I’d have to say this was the most peaceful hospital night he’s had.

He slept a good portion of the day, and spent the afternoon with Cat and Brian who came up for a visit. Kudos to Brian’s dad who drive them up. He was happy and tired when they left. Richard delivered an after dinner snack from Panda Express, and he was down for the count.

Praying that tomorrow goes well. I have a feeling that it will. God has sent us many prayer warriors, and tonight I’m feeling their power.

Action time

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The week after Easter was also spring break for David and Austin. We were trying to figure out what David would be able to handle when we received an invitation to join some good friends in the Outer Banks. They have a daughter Austin’s age, and their son wasn’t going to be able to join them, which left David with his own Master bedroom for the week. Austin got to hang out with two other teenage girls, and Richard and I were able to cater to David’s needs.

He felt good most afternoons, but mornings were a little rough. He had some issues with fatigue and minor headaches, but he was able to go to the beach and hang out some. His good friend, Catherine, was staying with her family just one town away, and so the two of them were able to hang out.

Austin used some of her Christmas money to buy a longboard skateboard. A lot of her friends here ride, and she was thrilled to be able to take it out on the nice flat streets and sidewalks in the Outer Banks. This time of year it isn’t very crowded, so the girls were able to get some quality riding time in. Austin already looks like a natural.

Richard, David, and I came back from the beach early to go to NIH. They did an MRI on Thursday evening and we met with the doctor on Friday morning. David’s dad met us there.

The news wasn’t great. The cancer has spread in David’s brain. The tumors themselves are only negligibly larger, but there are signs of new growth in a lot of areas. This wasn’t terribly surprising since he hasn’t been on any cancer fighting drugs for over a month. (He had to get the shunt put in, so that put a halt to his other treatment.)

We talked to NIH about possible treatment options, but he doesn’t qualify for any of the trials that they currently have. He will need to go on chemo for at least a couple of months. The NIH recommended that David go to a hospital with a brain tumor clinic. We asked for recommendations in the region, and they gave us five adult hospitals. ( I had asked them previously about Children’s National in DC and they approved of that hospital, however, they don’t treat children at NIH, so they don’t know a lot about other children’s hospitals.)

Anyway, I have done a lot of research, and it is hard to find info on which hospitals are best for brain tumors. US News and World Report ranks hospitals, and you can read who is good for cancer, but it’s important to find a specialist who deals predominantly with your type of cancer. So in order to help others in the search for good brain tumor hospitals, I’ll share the recommendations they gave us:
Duke, University of Virginia, Johns Hopkins, Sloan Kettering, and Columbia.

David has said that he wants to fight this cancer, and we stand ready to do whatever we can to get him the best care.

In the meanwhile, we have registered for the Race for Hope in DC the first weekend in May. There is an organized visit to the representatives a day or two after the race, and David said that he wants to go help raise awareness for cancer research funding. I’m very proud of him and how he is always looking to help others.