Childhood Cancer Awareness Month - Nathan Mwenda

Nathan Mwenda

Diagnosed at age: 8

Currently: a high school junior, age 17

Lives in: Richmond, VA

What was your diagnosis?

Craniopharyngioma (brain tumor)

What treatments or surgeries did you have?

I had surgery to get a shunt and radiation treatment at VCU Medical Center.

What organizations are you involved with?

I am involved with Children's Brain Tumor Foundation as well as Camp Sunshine in Casco, Maine and Camp Mak-A- Dream in Gold Creek, Montana.

Who were the first survivors/thrivers you met?

The first cancer survivors that I met were those from Camp Sunshine. I found out about Camp Sunshine and Camp Mak-A-Dream through Children’s Brain Tumor Foundation.

What is your personal theme song?

My personal theme song is “Lean on Me” by Bill Withers

How are you fighting back against tumors?

I’m fighting back against cancer by advocating for myself, others, and staying positive.

Any advice for people at the beginning of their battle against tumors?

My advice is to be strong and hang in there. Don't let the bad things people say about what you’re going through bring you down. Cherish your family and friends.

Childhood Cancer Awareness Month - Steven Bell

Steven Bell

Diagnosed at age: 9
Currently: a high school senior, age 18
Lives in: San Diego, CA

What was your diagnosis?

Primitive Neuroectodermal Tumor or PNET (brain cancer)

What treatments or surgeries did you have?

In San Diego, I was performed on successfully to have my baseball sized tumor removed. As far as we know, all of the tumor was removed. But, to make sure, I was sent to St. Jude Children's Research Hospital where I was given 35 days of radiation, including concentrated radiation to the tumor bed, and radiation to whole brain and spine. I was given 30 days to go home, and then returned for four cycles of high dose chemo therapy.

What organizations are you involved with?

I am involved and have presented or assisted with fundraisers for Rady Children's San Diego, Make-A-Wish, the Pediatric Brain Tumor Foundation, the Jordan and Kyra Memorial Foundation, St. Jude Children's Research Hospital, and the American Cancer Society.

Who were the first survivors/thrivers you met?

The first survivors I met were at a group for teenagers with cancer, in treatment or surviving, and their siblings/friends. The group was at my local children's hospital.  It's called SOMBFAB, (Some of my best friends are bald) and I found out about it through the program coordinator at the time. The group is unofficially ages 13-35, however some kids as young as ten have been invited, and some of the people over 35 still come.

What is your personal theme song?

I would say my personal theme song would be Hakuna Matata. I get down and sad, even without surviving cancer. The reason I can keep a good mood usually is by telling myself "no worries."

How are you fighting back against tumors?

I fight back against tumors by being aware, and by sharing my story at events, with friends and family, and by attending and supporting fundraisers for several institutions dedicated to fighting tumors and other cancers.

Any advice for people at the beginning of their battle against tumors?

I would say stick through it. It's hard, and whether or not your journey is smooth as mine was fortunately, or rough, as many of my friends' journeys have been, you can do it, you can come out of it as yourself. Your tumor will never define you if you don't let it, and if you tell yourself you can do it, nothing, and I mean nothing, can stop you.

TUMORS SUCK! THEY MAKE US ANGRY! YOU WOULDN'T LIKE US WHEN WE'RE ANGRY...

Surgery!

Surgery is tomorrow, September 4th! While most other high school/college students will be gearing up for school, I'll be gearing up for some IVs and the operating room haha.

Here are some of the videos I’ve made (starting from most recent) describing surgery, revelations, and the recovery process over the past couple of days leading up to this big event..

You can stay posted on my recovery process via CaringBridge here

2012 TUMORS SUCK PAINTBALL BENEFIT: A New Perspective

August 4, 2012 Pinckney Michigan  -  I met Eric randomly in 2011. He happened to be from the same city that I currently live in (Ypsilanti).  I found out we were both brain tumor survivors. He tried to get me to go to the Masskicker’s Paintball Benefit, but I was stubborn and I declined. I was concerned about the physical demands and chickened out. But at least I got to eat some burritos with Eric and his brother, Oliver in Ypsi. I told myself that next year I should give it a chance.

In 2012, Eric invited me to a pre-event dinner at Potbelly’s, down the road from me and I decided it would be good to meet some new people. I’m really glad I went. I got to meet two really cool girls from New York (Deana and Jamie) and I got to know Eric and Oliver better. We spent the entire night talking and barely any of it was about cancer or brain tumors. I had so much fun that night and there was more to come the next day!

Oliver kindly drove the girls and I to the event in the morning. I have to admit I was a little intimidated at first. There were all these hardcore paintballers with mohawks and heavy duty gear. Thankfully, I had at least gotten to know Eric, Oliver, Deana and Jaime. So I had some comfort in knowing I wasn’t the only person who was pretty new to paintballing. I had no idea there was so much stuff involved in paintball ( markers/guns, masks, CO2 ,pads, loose clothing, missions,  special fields, referees, etc.). I was in no hurry to get on the field, but it seemed like everyone wanted get out and going. So I got my gun, mask, paintballs, and CO2 tank filled and quickly followed Oliver on to the field. (This is before I realized someone was going to give me pads a special shirt, and a body guard). I was nervous, but knew I was going to stick close to Oliver. That is… until he got shot right next to me. We were hiding behind a small building and taking on heavy fire. I had never heard such noises. Paintballs were hitting walls rapidly and zipping past my head. It was loud! We were pinned down and I couldn’t tell who was friendly and who I was supposed to be shooting. When Oliver got on the ground to shoot some rounds off he got hit pretty quickly. I was left all alone! Then some guy , who I think was on my team told me shoot at some hidden guy up front. As soon as I took a peak around the corner I got shot in the abdomen. I think it might have ricocheted off the building because it only stung a little. My shirt was a mess and I was out of the game. I don’t think I even got a shot off. I was too worried about shooting my own teammate. Everyone had masks and was in camouflage. It was hot and I was pooped!

The second time around, I was more prepared, but I still didn’t know who to fire at. I was stuck behind a tree and was just firing randomly from behind the tree with my bodyguard. Then what was supposed to be a “helicopter” came around and I was told to fire on it. So I started to unload on it. It must have gone behind one of my teammates because he told me to stop shooting him in the leg. (LOL!)I was just firing as many paintballs at the thing as I could. When I got back to the tents I didn’t even realize that my socks and shoes were covered in paint. Who would shoot at my feet, right? I was pretty unscathed though.

The best part of the day was when we got to unload paintballs on a bunch of unarmed volunteers running around a paintball course. I must have fired off 400 paintballs! An added bonus to the day was the M-16 marker I was given during the raffle. It’s pretty sweet looking and I can’t wait to use it next year.

Overall, meeting new people was the best part of the event. The organizers and the volunteers were really great.  As a 15-year brain cancer survivor, I’ve been to several Relay for Life events and I have to say the Hell’s Survivor’s Benefit was by far more fun. It’s nice to have an alternative experience. I look forward to returning next year.

An Open Letter to Katherine Schwartz

My doctors rock.  Not just because they're experts in my disease and not just because they're some of the smartest people I know who work at one of the very best facilities in the entire world.  They rock because they care.  They're human and they show it.  Recently, my Oncologist's Physician's Assistant, Katherine Schwartz, was nominated for a prestigious award and I had the privilege of writing a letter of recommendation for her.  I was floored and thrilled beyond anything that I was asked and even more excited to let her know how much she meant to me.

I want to share this letter because it's so important to me that the world knows just how much my doctors affect my life.  At times, they give me the kind of news that no one wants to hear and no one wants to deliver.  They do this with kindness and professionalism and sometimes with tears in their eyes.  They hand me the worst of the worst in the most gentle way possible and I can't imagine how it makes them feel to have to have to do this. I love them because they're not just doctors; they're human.   I'll forever appreciate the work that they do.  I'm so fortunate to have the opportunity to be able to tell them on a regular basis and I'm even more fortunate to have been able to put my appreciation in writing  for the fabulous Katherine Schwartz.

Below is the letter that I wrote for Katherine.

Dear Selection Committee:

My name is Becky and I am living with a rare form of thyroid cancer that currently has no systemic cure.   I live in Florida, but I travel to MD Anderson Cancer Center in Houston, TX so I can be treated by an expert that specializes in my disease.  While I definitely don’t look forward to my follow-ups and wish they weren’t a part of my life, I don’t ever mind going to the doctor because I am fortunate enough to receive top of the line care with the most amazing doctors and professionals in the entire world.  One of those professionals is Katherine Schwartz in the department of surgical oncology.  She is an incredible human being.

I met Katherine immediately before my first biopsy and she was one of the first people that I spoke with after that same biopsy reassured me that, yes, I had cancer.  She was a breath of fresh air in the middle of the dreariness of cancerland.

 When I was diagnosed , I felt like my heart was going to beat right out of my chest and my  soul hurt so badly that I didn’t think I would ever breathe normally again. I was scared and feeling like no one in the world could possibly understand the madness that I was experiencing.  It was Katherine who pulled me through that.   Katherine explained things in detail and on my level and with a kindness that only an exceptional individual like her could display.  She personally read every single scan result to me over the phone.  She reviewed every last detail of each finding, test result, poke and prod.  And when I cried, she gave me a million reasons why everything was going to work out.  Katherine doesn’t only treat my medical condition; she treats the ache in my soul when I need it the most.  Katherine makes the tough stuff a little bit easier to swallow.  That to me is invaluable.

I often find myself explaining my situation to doctors over and over again and for the most part, I end up educating them about the ins and outs of my type of cancer.  This is draining and discouraging.   Katherine is better than that.   She is not only incredibly knowledgeable about my disease; she takes the time to get to know Becky the person, rather than just Becky the patient.  She never lets me leave the hospital until she knows I understand everything that has happened and everything that might happen. I leave a conversation with her feeling educated and like I have choices. 

I could write a letter for miles and miles telling you about the fabulous Katherine Schwartz.  I could tell you about my liver scans and how she delivered my news perfectly.  She wasn’t just a medical professional that day.  She was a compassionate human being that cared about my outcome.  I could tell you about the scar on my neck and how Katherine worked extra hard to make sure that I knew how to take good care of it and reassured me that this was just a small detail in the grand scheme of things.  I could tell you about the day I couldn’t stop crying because I thought cancer was going to ruin my life.  Katherine was there then, too and all it took was a conversation with her to help ease my worries.  I could tell you about all of these things and more, but words will never be enough to describe the special qualities Katherine possesses.

 I have to live with cancer and the unknown.  I can’t predict the future and I don’t know what cancer or life is going to throw in my direction.  Knowing that a medical professional like Katherine is by my side makes all of those things a little more tolerable.  Katherine’s job isn’t easy and she doesn’t always get to deliver good news, but I have never seen Katherine without a smile on her face and a way around the cancer obstacles that come in my direction.   I’ll always be appreciative of the care she provides for me because at the end of the day it’s not just medical knowledge that keeps me going, it’s the kindness and authenticity of people like Katherine.

Sincerely,

Rebecca MacKenzie

Cancer survivor and proud patient of Katherine Schwartz

Update on BT Adventures

Today, today, live like you wanna,

Let yesterday burn and throw it in a fire, in a fire, in a fire,

Live like a Warrior

Matisyahu, Live Like a Warrior

Spark Seeker, 2012

There have been so many developments in the past couple of weeks that I found it easier to sit down for a few minutes and record the following videos rather than type everything all out. I had a great visit with MD Anderson last week and loved the comfortable atmosphere that they nurtured as well as their proton beam (who eerily resembled characters from the TV show House,) but learned that I cannot use their proton beam radiation machine without an open biopsy to determine the exact cell type of my tumor; and, due to its location, the open biopsy would equate to almost a complete resection of the tumor anyways. Assuming that at least 80% of the tumor was removed, proton beam radiation would be rendered pretty much needless after the biopsy/surgery. The MD Anderson visit made my decision a bit easier because they eliminated the options of what to do, and narrowed the decision down to who/where do I want to put my life on the line. I will definitely revisit the proton beam option down the road if there is a reoccurrence or determination of its necessity.

After consideration of time constraints, my level of confidence in facilities, coordinating appointments, and the experience levels for the insular region of all of the centers I visited, I have chosen a doctor at the University of California San Francisco (UCSF) to perform my craniotomy, which will take place on September 4, 2012.

This first video details my initial diagnosis of a brain tumor in 2007 over the course of the past five years up until today, as I approach a craniotomy in upcoming weeks.

This second video explains the expectations and possible outcomes of my craniotomy