Young Adult Cancer Canada > Community > Profiles > Rachel Baumgartner

Rachel Baumgartner

Age at Diagnosis: 15

Current Age (at time of profile): 24

To view Rachel's Poetry please visit http://www.liddyshriversarcomainitiative.org/Newsletters/V03N04/rb_poems.htm

Check out Rachel's Blog at: http://iamobsessedwithlife.blogspot.com/

Hometown
Saint Louis, Missouri, USA

How did you find out you were sick? What events led to the diagnosis?
I was playing high school field hockey (fall 1998) and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn't think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well, one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyways. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up.

I had an egg-sized tumor pressing on my spinal cord at T3 and T4. It was already rapidly suppressing my breathing and emergency surgery was in order. I had the surgery early the next morning. Thankfully I regained all my feeling during surgery. I started chemotherapy within a few days when it was determined it was Askin's Tumor (in the Ewing's Sarcoma family).

It all happened so fast, but I recall comforting my mother and worrying about letting people know about what I was going to miss. From the first minute of this crazy journey, I accepted it and whatever I had to do to get through it, I would just do it.

What year was it? What was your age at the time?
1998, 15 years old.

At what level of education were you at diagnosis?
Sophomore in high school.

Do you work? Art Commissions, student.

What was your diagnosis?
Askin’s Tumor.

What are your career goals?
To become an art therapist and, on the side, do some inspirational speaking, interior design, painting, writing, etc.

How did your family react?
My family was very supportive and changed around their lives to accommodate my needs. I showed them that I did not want them to be sad and cry around me and I lead them through my experience with optimism.

How did your friends react?
Most of them were really great. When I relapsed a second and third time though, the true friends stuck by and the others faded.

What did your treatment consist of?

Medical Side: I had emergency surgery Dec. 5, 1998 for my first tumor. They removed as much as they could of the egg-sized tumor but it had spindles that went all over. I did a year of chemotherapy--I had a “lovely” time with VP16 and Ifosamide every 6 weeks. Then every 3rd week in between I’d have “fun” with juicy red Adriamycin (the word still makes me shudder) and Cytoxan. Vincristine was a weekly event until I had trouble walking in March of 1999 and it was stopped. In March and April, I had 6 weeks of radiation interlaced with the chemo.

I was in remission for 2000. December of 2000 stem cells were taken to store in case I ever needed them. While studying them, cancer cells were discovered. I was more IN than out of the hospital for the next 5 months. Cisplatin and Ironotecan were the enemies of choice this time. June 3rd, 2001 I was admitted for my autologous stem cell transplant. Days of fluids led to VP16, Cytoxan and thiotepa. I was in for a good 6 weeks and had many complications.

Another year and a half of remission followed. Then Nov. 2002, a new tumor was found between my heart, lung and spine. I had maxed out on a lot of chemo and had a lot of radiation already and a transplant. Everyone else who ever had Askin's Tumor and relapsed after a transplant had died within weeks. My prognosis was nonexistent. Months passed and the tumor only grew slightly. I had a tiny bit of radiation and a tiny bit of chemo just to keep me comfortable and help with breathing. A year passed and it seemed stable and not growing. The PET scans showed little to no activity in the tumor region. In May of 2004, a cardiovascular and thoracic surgeon took the tumor out safely. It was the size of a small nerf football. When they biopsied it, it was completely dead. The doctors were baffled and it is a HUGE miracle. It is believed I am the only person ever to survive this long with my type after a relapse after a transplant (4 1/2 years now!). I have been in remission 3 years now and just take it a day at a time--there's no one to compare me to!

In which hospital(s) were you treated?
Saint John’s Mercy Medical Center, Saint Louis Children’s Hospital.

What is your current medical status?
No evidence of disease-3 years (longest ever)!

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?
I have come a long way! My immune system is still a little suppressed ever since my autologous stem cell transplant 6 years ago. I get colds, infections and such but it is slowly getting better. I have a weak right lung--it does about 20% of my breathing (from radiation). My knees have severe arthritis--"like that of a 70 year old". I had my gall bladder removed. My thyroid does not work and I take medicine for that. I have hormone deficiency. I have a lot of pain in my back and legs. I have some nerve damage in my feet. My intestines are damaged from my transplant and give me problems from time to time. ETC! Despite all of these possible deterrents, I live a very active and full life.

Life Now: I am studying interior design and taking a full course - it took me so long to get to this point. I have my own art commission business (murals, furniture, t-shirts, logos, canvases, a little bit of everything). I travel quite a bit for various vacations and cancer related events. I have a very active social life when I feel up to it! I help out with cancer kids’ camps and do things for local and national charities having to do with various aspects of cancer. I am also a writer and national inspirational speaker. I am always up for helping people and meeting new people!

What is/was the toughest part of your challenge?
My stem cell transplant was very tough. I also find the post-cancer experience to be challenging.

What is/was the best part of your challenge?
Meeting amazing people and having amazing experiences (traveling, speaking in different parts of the country, reuniting with my artistic and writing side when I could not play sports anymore) and being able to touch so many people!

What really motivated you to keep going while you were sick?
Family, boyfriend and friends. Traveling (almost always have a trip in the works). Art. Writing. Speaking to others. Helping others.

What lessons or messages have you taken away from your experience?
That I am very strong and can do almost anything. That cancer is the best and worst thing that has happened to me. I realized even more that I should just go with things and they will work out.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I am usually peaceful about it.

Did you attend any support groups during your challenge?
One about 6 months after my last surgery.

It was really nice and I wish I had done it earlier in my journey.

Yes it helped and I am still in touch with some of the people.

How are you connected with Young Adult Cancer?
I met Geoff (the founder) last year at a retreat in Montana.

If you are interested in connecting with Rachel Baumgartner please email connect@youngadultcancer.ca.