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Dad and Kids, Dan, John, Jenna, Amanda, Tony

Jenna's scan was clean again in June 2011! She is now 6 years cancer free... next MRI in June 2012!!

1-11-04, before the DX

It all started 8 years ago in March 2004!!



History
Jenna was diagnosed on 24 March 2004 at 18 months old with a Diffuse Intramedullary Fibrillary Astrocytoma (malignant grade 2-3 tumor entwined in her spinal cord from C3-T1/2). She had surgery in April 2004 which removed about 95% of the tumor.

The surgery left Jenna hemiplegic from a possible stroke during the surgery. She has diminished motor function on her left side.

Although Jenna does have physical sensation in her left hand, she has next to no motor function with the fingers on her left hand, save her index finger.

Jenn has adapted very well to the physical limitations presented her. Within the first two years of her life, she has had to TWICE learn to pick up her head, hold it straight, sit up without falling over, crawl, stand, walk with furniture assistance:), walk freely, and yes - finally -- RUN!! She does it well and gets better at running by the day. She runs with Lucy (our little Yorkie/Shitzu/Pomeranian/Pekingese beautiful and nutty dog).

Post-surgical treatment at CNMC in DC

After the tumor resection, Jenna had over a year of horrible chemotherapy cocktails of Vincristine, Carboplatin, and Temodar. None of them reduced the size of the remaining tumor. In FACT, the tumor started to grow back in the late winter of 2005.

So, "TEAM JENNA," at CNMC in DC, recommended Jenna for proton radiation therapy at Francis H. Burr Proton Radiation Therapy Center at Mass General in Boston.

She went through six weeks of daily radiation in June of 2005. She made the local news in Boston on WCVB when CVS botched a prescription for "Albuterol?" for possible pneumonia complications. She got through that fine.

The entire team for Jenna and other kids, like her friend Tuva from Norway, consisted of folks from the 3-headed team, if you will, that makes up the NPTC: Harvard Medical School, The Dana Farber Cancer Institute, and Mass General Hospital itself. Their goal was to, in short, shoot the tumor full of enough proton beam radiation to kill it, but not hurt Jenna. The team finished Jenna's radiation right about at the midpoint of range of desired "rads."

Results

The six weeks paid off with some very good news with September 2005's MRI. Jenna's tumor was shrinking dramatically!!!

The December '05 MRI showed that the tumor was stable again (not growing, not shrinking). However, the BEST news in December was that the tumor was not as "ACTIVE" - meaning the remaining tumor was not absorbing the contrast dye, meaning - the TUMOR was dying.

Finally, on March 9, 2006, one month to the day after Jenna's Great Nana Ethel became an Angel, the very Excellent news came that Jenna's March MRI showed that two of the three remaining "SLIVERS (2mm max in size)" of tumor were DEFINITELY inactive. She was then officially in the beginnings of REMISSION!!!

Her MRI on D-Day, the 6th of June 2006, provided proof positive of the power of collective prayer..."CANCER FREE."

The Future

Jenna isn't just a survivor, she is a THRIVER. Thanks to everyone who had any thought or prayer see this "cancer, cancer, go away and stay away from our Jenna Rae."=)

Jenna IS definitely in a whole new wondrous world: growing physically, emotionally, and socially. We ALL know she's dealt with worse and is dealing with other transitions. Her scoliosis is being held in check by some very good folks in that field.

NEXT MRI: June 2012

The Big Picture

While we all still celebrate Jenna's victory, Cancer is still the #1 disease killer of children. Cancer kills more children ages 15 and under than AIDS, diabetes, cystic fibrosis, and congenital anomalies COMBINED.

At least 46 children are diagnosed with cancer each day - each DAY!!!

At least FIFTEEN children die EVERY DAY from their existing cancers.

We don't want upset anyone reading this page. However, the number of children who contract cancer daily grows steadily. It robs children of having of what we (supposed) adults once had and still have - Innocence.

The numbers of new pediatric cancer cases and deaths of existing cases also grows higher by the day.

We can NEVER thank you enough for your support and love.

Journal

Saturday, January 12, 2013 2:10 PM CST

2012 was an interesting and challenging year for Jenna. The important thing is that Jenna is still in full remission. She had her scan in June and everything was stable.

The kids did have some fun relaxing weeks this year in the Bahamas, Virginia, and Wisconsin. She also really enjoyed her summer vacation at a fun summer camp and a week at horse camp! She still REALLY wants a horse some day.

Thankfully she hasn't had to wear her scoli brace since March of 2012. Her curve went down from 28 degrees to 12 degrees just by xraying her WITH her shoe insert (for the leg length discrepancy); however, she is now back up to 18 degrees. She returns for more back xrays in March 2013.

She had been complaining of shoulder/shoulder blade pain for the first half of the year. Nothing showed up on the xrays in March, but a mass showed up on the June/August MRIs near the top of her left shoulder, and a stress-line fracture in her shoulder blade showed up on an ultrasound in July. (The fracture was probably from being pushed down hard in her back in January during a rather rough basketball game.) The doctors don't know exactly what to make of the mass; it is slow growing, not a solid tumor, so probably not malignant, possibly a hemangioma - possibly a result of the proton beam radiation she received years ago. They don't want to do a biopsy as it might bleed too much (if it is a mass of blood vessels). It is causing her a lot of pain so they sent her to pain management (after first seeing a neurosurgeon, neurologist, ortho surgeon, and then a vascular surgeon!) They have her on a pain patch for the probable nerve pain for now and are scheduling her for a PT program.

Then along comes September... great 10th Clue-themed sleepover birthday party, then at the end of the month she fell off a scooter at school (the kind you sit on in PE) and got a concussion. No physical internal damage on the CT, but it was labeled as a traumatic brain injury. Afterwards, she went to CNMC Concussion Clinic for several months because of her really bad headaches, balance problems, memory loss, and stuttering. The doctors said it doesn't usually result in stuttering - hers lasted 8 weeks, which is the same amount of time she was out of school. Mom tutored her at home several hours per day during that time and a home/hospital tutor came 3 hours per week for the last few weeks. She went back to school in December for 2 hours per day and then finally back full-time in January. Thankfully, she was able to keep up with all of her homework and lesson plans and received Principal's Honor Roll!

As if she didn't have enough to deal with, she fell down the stairs at a friend's house in December and BROKE her big toe, sprained her foot, and ended up in a walking cast. Four weeks have passed and the Dr. said this week that it might need to stay on for another 3-4 weeks as it hasn't healed. I think I need to start wrapping her in bubblewrap every day!

She is a trooper, but 2012 was a bit too difficult to bear for her at times. The kids are starting in a new school (moving counties for a better school district) in March. We hope that 2013 will be a more event-free year in terms of illness and accidents! The kids are full of hope as they move to a new house and school and are excited to meet new friends along the way.

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