Great News!

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Today started out like a normal Pittsburgh visit. David was with his dad this trip, so Richard and I flew to Pittsburgh from Kansas instead of our normal drive from Virginia. We went to Dozen so we could buy some cupcakes to send back with Mark and David for Austin’s birthday. I’ve decided that as part of her 16th birthday, there should be a series of 16 gifts. The cupcakes were gift 6. Since we were going there anyway, we decided to have breakfast there. The cinnamon rolls really are simply amazing, and we enjoyed talking to the shop owner for a minute about his socially responsible practices. A nice morning.

We went to the hospital and met up with Mark and David. David was working on a report for school, and everyone was in pretty good spirits. Partially due to the news that David’s wish from Make-A-Wish is going to be granted this week. On Monday, he will fly to LA to meet Gordon Ramsay. The meet & greet won’t actually take place until June 1st – Austin’s birthday. The Make-A-Wish folks didn’t know it was David’s sister’s birthday. It just worked out that way. A cool thing.

David goes in and gets weighed first at each visit, and then depending on the visit, he may or may not get blood drawn. Today was a blood-draw day because he had an MRI this visit. They go hand-in-hand. They draw 10 little vials of blood, and he smiles and talks to the nurse the whole time. This time and the last time, they were unable to draw all of the vials out of one vein. So they have to stick his other arm to finish the task. Nobody’s fault; it’s just one of those things. Anyway, David doesn’t flinch. He just sticks out his other arm so the nurse can complete her task. I remembered that we had gotten some new band-aids with crazy sayings, so I pulled them out as a since he had to get stuck a second time for the blood draw. He picked a bandage that said “Ninja Fight”. Silly stuff, but it passes the time.

As he was waiting for the blood to drain into the tube, the doctor came in. She never comes in that early, so it was a little odd. She had an observer with her today, a young man who looked barely older than David. She was more jovial than normal, and shortly after entering the room she announced, “I have really good news.” I’m pretty sure that is the first time we’ve heard a doctor say that since all of this began, so she had our full attention instantly.

She didn’t keep us waiting. She told us that David’s tumor had shrunk. And not just a little bit, but an amount we could see. We asked to see the MRI, and the mass looked about half the size it had been in January when we began the study. Half! We were, needless to say, jubilant! Well, I think I was in shock as much as anything else, but it was cool. Very cool. We asked a few more questions and the doctor did the normal neuro check. All good.

He got to go downstairs for the vaccine and tell one of his favorite nurses, Kim, that his tumor had shrunk. She gives him the vaccine – which means she sticks him twice with a needle – and he still likes her. She was very happy to share our good news!

David and Mark left to drive back to Virginia, and Richard and I headed off for the airport. It felt like we should be doing something more… shouting from the rooftops… something. Instead, we went to lunch and praised God for the miracles He has performed.

When you get good news you should be happy. And today I was definitely happy. I was also so overwhelmed that I almost felt sick. Relief like a storm rolled through me. Pushing its way out through any path it could find. My throat closed. My eyes watered. My mind couldn’t hold the joy. Such intense feelings that were positive, yes, but in a sort of mind-boggling way that still has me reeling even hours later.

I know this isn’t over. But we’re making some real progress here. It feels like we are on the path to life. For David. For countless others who could benefit from this drug once it finishes the study and then clinical trial. The battle is not over, but it finally feels like we have a weapon to wield. I will keep posting more about this as we move forward but this is cancer research at its finest. This drug has kept us out of chemo and given David great quality of life over these last several months. And now the tumor is shrinking. Yeah, I feel like shouting from the rooftops. But instead I’m writing this blog. And hoping that you’ll share this news with everyone you know. We are on the cusp of being able to treat cancer without the barbaric chemo that has been the standard for so long. PLEASE encourage more spending for cancer research – especially vaccines – and if you can, please give a little yourself. You never know when this may affect you. My prayer is that they will have an excellent treatment before anyone reading this ever has to deal with a cancer diagnosis.

Thank you all for your prayers for David. We all feel the love with every passing day, and I know that it has made a huge difference in how he has handled this illness so far. We are so appreciative of the prayers, and hope you will keep ‘em coming!!

Prom #3

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Ok, I’m pretty late with this update. If it makes you feel any better, I still haven’t downloaded the pictures from the camera, either. BUT, prom #3 did happen – even if I don’t have pictures here to prove it. I’ve kind of decided that for now, this is the “meat and potatoes” of my updates, but Facebook is the “dessert”. If you want the fluffy and sweet, you can find it on Facebook. This is the wordier version. ;o)

Prom #3 was a huge success. I may have mentioned that our Kansas neighbor, Mayumi, was the date that David chose. He really enjoys being with her, and they had a packed weekend! Mayumi and her mom, Elizabeth, flew in on Friday afternoon right after school. Richard flew out with them, and the kids and I drove down to pick them up at the airport. We made a quick stop to drop off their stuff, and then drove up to Mike’s American Grill for dinner. We’d been bragging about it for months, so it was cool to be able to take them there.

David planned an elaborate meal and helped make some of it. 😉  Actaully, he had planned to make all of it, but Richard and I wanted him to get some rest, so we sent him to take a nap while we did most of the prep work. He served salad, sweet potato soup, salmon with brown rice, and asparagus wrapped in bacon. For dessert, he served brownies with vanilla ice cream and raspberry sauce. Elizabeth slipped into the kitchen and helped quite a bit, and the raspberry sauce was all her concoction. It was delicious! And of course, it was organic!

Saturday found us mostly running around on “prom” errands, but the kids had fun. Mayumi wore a very pretty gold dress and David wore a black tux with gold vest and tie. (In case you are “lame” like me, I should mention that it was a long tie – not a bow tie. Apparently, bow ties are not “in”.)

David didn’t have his car for the weekend, so he borrowed ours. The weather was a little questionable, so I felt better with them in our car anyway. I wasn’t at the dance, of course, but word on the street is that the boy isn’t a bad dancer. He brought Mayumi home, and they changed into casual clothes to go to After Prom. Richard and I drove them to After Prom since it was quite late and we weren’t sure how many crazy (drunk) people might be on the road.

Sunday morning had us saying goodbye way too soon to Mayumi and Elizabeth, but everyone will be together again this summer.

We’re almost ready to start our summer visitation schedule, so Richard and I packed up most of our Virginia stuff and drove with Cooper back to Kansas shortly after the prom weekend. We still have some Christmas decorations out, so I need to get things in order before the kids arrive for summer.

However, we weren’t in Kansas for long and now we are back in Pittsburgh for David’s next vaccine. He gets an MRI this time, so we are eager to see those results. Please keep praying! We know it makes a huge difference!

Words of Wisdom

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This past week we attended meetings with a group of people I have grown very fond of over the years. They have been my mentors, my employers, my co-workers, and mostly, my friends. It was so nice to be able to spend some time with them and think about normal work stuff. It was also nice to see that so many of them were praying for and thinking of David. Several of them have had their own trials recently (tornadoes, thefts, health issues) and while we commiserated over those, there were a few of them who shared their stories of triumph over hardships.

Those stories are always good to hear, but one stood out from the crowd. It came in the form of an email, and I’d like to share some of it with you here. It’s from my friend, John Street (emphasis added by me):

“It tears my heart out to hear about your son’s brain tumor and the
challenges you must be going through.  17 years ago this month, my baby girl
started a 5-year battle with leukemia that reshaped everything I think about
in this world.

We were very lucky that she prevailed.  She went on to become valedictorian
of her high school class and she’s at UC San Diego now, majoring in
International Studies.

She was an inpatient at Children’s hospital for a solid year, followed by 3
yrs of chemotherapy and two years of weekly/monthly testing.It was an immensely trying time to be a parent and make the choices of how to provide the best care for her.  After about six months of not knowing which end was up, here’s the approach we finally settled on.

First, we committed to be unwaveringly positive.  We just pretended like
this was normal for all kids her age and we focused on having fun and being
givers to those around us.  We became the “welcoming committee” to other
families who arrived in the cancer ward against their will.  My daughter
became the goodwill ambassador for all the sick kids.

Second, we called on the doctors to do the best they could.  We believed
that they might not know everything but that we were benefiting from the
vast body of knowledge that came from all sick kids who had walked this path
before us.

Third, we completely “gave it up” to a higher power … her Mom is very
religious, so she organized a ton of prayer circles, etc.  I feel an
awareness of spirit but I’m less religious, so I made it more of a “laughter
is the best medicine” effort of creating happy times with big groups of
people, thinking that if we create enough happy times for others then that
energy works its way back to us.

It became huge — bigger than we could have imagined.  The top rock ‘n roll
radio station in New York City WPLJ did a benefit softball game for Chelsea,
with Meatloaf and all the teachers from the high school where I grew up.  A
local 3rd grade class made a quilt where each kid colored a square, and then
every kid took the quilt home and slept with it for a night and they were
told to dream happy thoughts about Chelsea.  Then they gave her the quilt to
keep her company in the hospital.

Fourth, we enlisted the help of several experts in “alternative” therapies.
It was really tough to know who to believe.  Especially when the doctors
told us we didn’t need alternative therapy, and the alternative guys told us
we didn’t need doctors.  What finally did it for me, though, was we went to
a fancy clinic in Tijuana; we knew rich people and celebrities who would go there for top-notch treatment.  The doctor there told me to keep giving my girl the chemo, but to bring her to
him to give her treatments that would help cleanse her body of the poisons
and help her recuperate faster.  It seemed like a good middle-of-the-road
approach.  This place did “chelation” which helps get heavy metals out of
the bloodstream, and something called “live cell therapy” which I don’t know
a lot about, but went towards rebuilding her body after courses of chemo.

During this time we became more in touch with nutritional supplements,
thinking that our food these days has too many toxins – even if you eat all
organic, the foot just doesn’t have the nutrients that it did 50 yrs ago.  I
met an amazing man named Wayne Garland.  He used to be a Madison Avenue
advertising exec, responsible for Marlboro and Crown Royal in Europe.  Then
he got bone cancer.  He refused chemo and traveled the world trying to find
a way to be healed.  Eventually a buddhist nun on Kauai healed him of his
cancer and he devoted the rest of his life to spreading the word of natural
healing through supplementation.   I gave my daughter all the
supplements he recommended and I think they went a long way towards helping
her.

These days Wayne makes supplements himself so it’s a lot easier to get what
you need in a single place, and you can learn more about him at
http://www.AskDrGarland.com

One more thing I’ve come across in recent years wasn’t around when Chelsea
was sick but I definitely would have done it.  One of my clients, LifeWave,
makes a non-transdermal patch that stimulates the body’s acupuncture points
to achieve various things.  Over 40 clinical trials prove the effectiveness
of the patches.  Athletes use the “energy patches” to have heightened
physical performance.  Most recently, though, two of their products have
been creating tremendous health impacts – a patch that helps your body make
glutathione (an important antioxidant) and a patch that helps reduce the
biological effects of stress (it’s called Aeon). Check out http://www.LifeWave.com

The fifth thing we did for Chelsea was to spend a lot of time visualizing
the great things that she was going to do in her life.  We talked about them
out loud with our family and friends.  We imagined her gratuating high
school, getting married, etc.   We spent a lot of time visualizing the gift
she was going to be for the world.  And we didn’t put conditions on it, like
“if she’s around in 15 years she’s going to touch people’s lives” …
instead we just focused on her helping people and allowed that to be okay if
it was just helping the next kid who was terrified of walking into the
cancer ward, without trying to make some bargain about the future … I
believe the power of visualization is one of the most important creative
forces in the universe.

My heart goes out to you and your family — in a good way, not in a sad way
— and I send you many healthy thoughts.”

I was touched that he took the time to write down all his thoughts about the path they had traveled. One thing I learned quickly is that we each have different ideologies about how to deal with cancer. The survivors almost always have the same things in common though: positive outlook, lifestyle changes and dietary changes.

I hope that none of you will have to experience what we are going through, but the sad statistics are that many of you will. I don’t want you to be as unaware as I was when we started this. (There is no history of cancer in my immediate family.) Please eat healthy and consider organic food as much as you can. Look on the bright side – there is almost always a bright spot to focus on, even in the darkest times. And get active! We are still working on that part (unless you count chasing the dog to get whatever he is chewing on), but we are getting better!

Vaccine #7

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I had a nice Mother’s Day weekend with both David and Austin this past weekend. Their dad was nice enough to let me have them for the weekend, and we got to go eat at the Cheesecake Factory – a favorite for all of us. The weekend was cut a little short since we had to drop Austin off before we drove to Pittsburgh, but I really appreciated the extra time with them.

We found a new place to eat in Pittsburgh today. It’s a bakery, but they have some organic offerings. The chef/owner took a few minutes to talk with David about the culinary field. It was really nice of him to do that, and we would have talked to him much longer if not for David’s appointment.

Thanks to all of you who are praying for David. At the hospital today, he was full of laughs and smiles – a pretty odd thing when they are about to stick you with needles. He seems to be very aware – as are we – that we are living some blessed days.

We are driving back from Pittsburgh as I type, and all is well. David got the vaccine a little later in the day than normal, so that put us leaving much later than we normally do, but other than that, everything went smoothly. We drive through Berkeley Springs, WV as we travel, and it is a very scenic drive this time of year. Everything was lush and green and we enjoyed seeing all the new leaves.

We will get to have David and Austin with us this coming weekend, too. David will be attending Prom #3 with our Kansas neighbor, Mayumi. She is flying here with her Mom on Friday, and we are very excited to see them. David has been planning the meal he wants to make them for days. He’s also got a list of restaurants to take them to while they are here. It will be a busy weekend, but lots of fun!

Race for Hope

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It seems there are days when I have nothing at all to write here, and then I will have a number of days that are so busy and packed with activity that I don’t have time to write. The latter has been true for the last several days. It’s been good stuff, so I’ll try to fill you in.

David and Austin spent spring break with their dad this year. Since we had a week where we knew our access to them would be very limited, we decided to take part of the trip that we had to postpone when David went into the hospital back in September. So Richard and I spent the week in Portugal, but planned it so that we would be back in time to volunteer at the nation’s largest event to raise money for brain tumor research.

So after traveling for about 26 hours straight, we arrived in DC in time to get about 5 hours of sleep before reporting for duty at the Race for Hope. Five adult friends from Fredericksburg got up EARLY and met at 5:30 am in order to drive a group of SSBTRVA students up to DC to volunteer with us. I believe we had about 17 teenagers that got up early on that Sunday (quite a sacrifice) and then spent the better part of the day volunteering at the race. There were 11,000 participants, many of whom had taken the time to form teams, get t-shirts made in honor of a loved one, and raise money in addition to their entry fee. In all, about $2.5 million was raised. There were brain tumor survivors that participated in the race and that were just there to show their support. I found myself moved to tears a few times, just by the shear number of people who want to help us find a cure. I think everyone that participated came away energized that each of us can – and did – make a difference.

It was also fun for us because Austin was one of the kids that got to come up and volunteer. As much as David wanted to volunteer, he had attended prom with a friend of his the night before, and just couldn’t quite find the energy for both. There will be plenty of fundraisers, though, so we were happy he enjoyed the prom. This was #2 of 3 for him this year. He’s our family rock star. ;o)