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Tuesday, August 14, 2012

Happy Birthday Jessie!

Just a few months ago Jessie was a happy, healthy 10 year old girl. An honors student who loved swimming, playing volleyball, riding her bike, making jewelry, playing the flute, spending time with her friends and family, and going to movies at the drive-in theater.

Over Memorial Day weekend, Jessie started having back pain that continued into the week. Two doctors visits were inconclusive, but nothing serious was suspected. They thought it was either a urinary tract infection or possibly a kidney stone. A little over a week after her symptoms began, Jessie was in extreme pain and her parents took her to the emergency room. She was sent home with some pain medicine to go with her antibiotics and was scheduled for an ultrasound the next day, but that seemed like more of a formality.  

Unfortunately, it was not a formality. The ultrasound revealed a mass on her left kidney and 24 hours later Jessie was at a children's hospital preparing for exploratory surgery and biopsy. This surgery revealed that the tumor was unusual and wrapped around lymph nodes which would make removal dangerous. Testing of the tissue from the biopsy revealed that she had a variance of a Wilms tumor, a rare form of kidney cancer in children. She would require 6 weeks of chemotherapy, then surgery to remove her kidney and surrounding tumor, followed by 24 additional weeks of chemotherapy in addition to radiation treatments to get any remaining cancer cells.

Jessie started chemotherapy immediately and had successful surgery on July 30th to remove her kidney, the tumor, and lymph nodes. She re-starts her chemotherapy today. The chemotherapy has caused her hair to fall out and she has required red blood cells because her levels were too low. Jessie got some new hats, a synthetic wig, and was recently measured for her real wig to deal with the hair loss. 

All of this would be a lot for anyone to handle, especially a 10 year old girl, but Jessie has shown that bravery and strength are not determined by age or size. She has been strong since day one, often more concerned about how her cancer is effecting her family than herself. She even makes jokes about going bald. 

Jessie's prognosis is good, but she still faces a daunting 8 months of treatment. She won't be able to go back to school with her 6th grade class this fall or do many of the things she loved to do. She tires easily and her immune system will be weakened from her treatments. Yet, based on how Jessie has handled the first part of her battle, I have no doubt that she will not let this get her down and will come out of this stronger than before!

No child should have to spend her 11th birthday starting a new regimen of chemotherapy, but since that is the reality for Jessie, please join me in wishing a very happy birthday to a very special girl!

Wednesday, August 1, 2012

Jen, Part 1


2 months before diagnosis
In early October of 2008, Jen was a 30 year-old new mom to a healthy 4 month-old baby boy. Motherhood was particularly sweet for Jen because she had battled with infertility for several years and her son was born 7 weeks early, which was an emotional roller coaster. Things had finally calmed down, until she found a lump while breastfeeding one night. Jen was not overly concerned, but called her doctor who said it was likely just a clogged milk duct, but had her come in as a precaution.

Upon examining Jen, her doctor sent her to get a mammogram. Based on the initial reading of her mammogram, the radiologist asked her to stay for a biopsy and 2 days later she was diagnosed with breast cancer (invasive poorly differentiated carcinoma of the left breast, Grade 3). This was an aggressive cancer made more aggressive by Jen’s more active hormones because of her young age.

The week following her diagnosis, Jen underwent a barrage of tests including blood work, MRIs, an x-ray, and sonograms to learn more about her cancer as well as checking lymph nodes to see if the cancer had spread. These tests showed another mass in her right breast, but thankfully it came back benign. Several lymph nodes looked suspicious and would need to be studied further. Jen would likely need surgery and chemotherapy and/or radiation.

The doctors felt confident that they had caught the cancer early, so Jen had several options for surgery: partial mastectomy, lumpectomy, or double mastectomy. Her surgeon recommended the double mastectomy and chemotherapy. This was very difficult for Jen to hear. The surgery meant losing a part of her identity and the idea of chemotherapy terrified her. Yet, all of Jen’s concerns were overridden by thoughts of her son. She said,

“All I could think about was my 4 month old son growing up without a mom. And at that point, I knew I had to fight. If not for myself, for him. I asked my son to fight for his life when he was born 7 weeks prematurely. Now it was my turn.”

Home after surgery with drains
Jen went in for surgery 3 weeks after her diagnosis. In addition to removing her breast tissue, the surgeon also removed 5 lymph nodes, all of which came back negative for cancer. Overall, the surgery was considered a big success. Jen would now need to recover before starting chemotherapy and the reconstruction process. During this time, Jen learned that she had tested positive for the BRCA 2 gene mutation, which confirmed her decision to have the double mastectomy, because this mutation drastically increased the risk of reoccurrence. Unfortunately, this also meant that her chemotherapy would need to be stronger and longer.

First chemo treatment
Jen started chemotherapy 10 weeks after her surgery. Her first treatment was anything but normal. She felt fine during and immediately after, but had a severe allergic reaction several hours after treatment. She does not remember much, but was told that she had an anxiety attack where she was pulling her hair, trying to claw her face and pounding her fists on the bed. It took 2 morphine shots to calm her down! Luckily, the rest of her chemo treatments went more smoothly, although she did suffer from numerous side effects like nausea and fatigue after each treatment, which got progressively worse with each treatment.

Shaving her head
One of the most difficult parts of chemotherapy was losing her hair. This would make her battle with cancer public. Everyone would now know she was fighting cancer by looking at her. Yet, she decided to take control of the situation. Instead of waiting for all of her hair to fall out, she had her hairstylist shave it off. She had a wig, but never was quite comfortable in it. She decided to use scarves instead and came to love them. At the time she said, “I can shower and get out the door in 20 minutes! Plus, I never have a bad hair day, I don't care when it rains and I'm saving a ton of money on hair products/haircuts!”

Sassy scarf
Seven months after her diagnosis, Jen was able to get her chemotherapy port removed, which was a big relief. Nine months after her diagnosis she had her ovaries removed, which proved to be more intense than she had expected, but still another relief to know that she was reaching the end of her battle against the BRCA gene mutation. Jen has now been cancer-free for 3.5 years!


Jen with her mentor at a survivor's walk
Jen believes she survived this experience by relying on her faith and not dwelling on what she was going through. Jen had a huge support network of family, friends, and coworkers that also played a major role in her recovery. She connected with another woman who had been through a similar battle and she became Jen’s mentor and guardian angel. Her best advice was to follow a '10 minute day' plan where you take each day 10 minutes at a time and not worry about the rest.

Jen has been very open about sharing her story in hopes of helping others. She kept a blog during her treatment that had 400 followers. She was also interviewed by the local news and was featured in several television and radio ads aimed at raising awareness of breast cancer. Eventually, she would like to right a book targeted at young breast cancer patients. (I hope she does!) During her fight, she found that there weren’t many resources for those under the age of 40.


Jen and her son today
Jen’s story is another example of the importance of being proactive. Jen’s mom had been diagnosed with breast cancer 2 years prior, but at that time Jen’s doctor said that meant she would need to start getting mammograms at age 35.  She never expected to be diagnosed at 30, but thank goodness she contacted the doctor at the first sign of something abnormal!