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Jenna Rae Marcella

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Jenna's most recent MRI was on 6 June 2008.
See the new journal entry and slideshow below.





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). She had surgery in April 2004 which removed about 95% of the tumor.

The surgery left Jenna hemiplegic. She has diminished motor function on her left side. Her left leg is stronger now, but she will be wearing a small sole insert in both shoes (left larger than right) to help her stability. These small inserts are a huge measure of her progress. Jenna had to wear a small brace on her left foot for stability. This foot-ankle brace was shortened from a full-length calf-foot brace.

Although Jenna does have physical sensation in her left hand, she had next to no motor function with the fingers on her left hand, save her index finger. After only six weeks of intensive occupational and physical therapy at Kennedy Krieger's ICSCI, Jenna now can hold small objects with her left thumb and index and middle fingers.

She 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.

Post-surgical treatment

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.

NPTC at Mass General in Boston

Jenna went through six weeks of daily radiation in June of 2005. Dr. Torunn Yock was the head of "Team Jenna" in Boston. I have to mention here that "Team Jenna Boston" included some of the greatest minds in medicine and PHYSICS - yes! PHYSICS. 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 my terms, 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 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 GreatNana 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 in 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 held her up in prayer to see this "cancer, cancer, go away, and stay away from our Jenna Rae."=)

Jenna IS definitely in a whole new wondrous world. She is thriving mightily. Growing physically, emotionally, and socially. We ALL know she's dealt with worse and is dealing with other transitions as we all are as a family.

NEXT MRI: DECEMBER 2008

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.

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

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 - potential.

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, prayers, and love.

Lilypie 6th to 18th Ticker
Lilypie 4th Birthday Ticker

Jenna has been added to the "Kids Cancer Crusade" website as of about 20070406. She is one of so many Little Heroes and will be July 2007's "Feature Child of the Month".

Please be sure to sign my guestbook

Journal

Tuesday, June 17, 2008 9:04 PM CDT





Please rejoice and celebrate the good news with us! Jenna's MRI was clean again - that means she has been in remission for 2 years now!

She is doing really well. She started up physical and occupational therapy again at the Intl Center for Spinal Cord Injury at Kennedy Krieger in Baltimore. She is going for 3 hours of PT and 1 hour of OT each day for three days to help us learn some more home therapies to aid in warding off the scoliosis in her trunk and strengthen her overall. They are continuing with the electric stim - this time on her left palm/thumb, forearm, calf, and lower back to try and send a signal from the body part up through the spinal cord to the brain.

They made a couple of new casts today for her - one for her hand which will help her from hyperextending it and a new bright "Clifford Red" restriction cast for her right arm. She has one more appointment next week Thursday with Dr. Packer, her neuro-oncologist at Children's in DC, and then she shouldn't have to go back again until December for the next MRI.

Lately, I have seen some 18-month old children at school and I just can't imagine or believe that she was that small when all of this first happened. She has gone through so much and has come out a survivor! She is definitely one tough cookie - and we are so proud of her.

She starts in her new Kindergarten class this Thursday. It is in the daycare she currently goes to. So far, there are about 9 kids in her class. Formal instruction won't start until September. She started out in room 2 of the school and has progressed along all the way up to room 22!

Thanks for checking in on Jenna. Take care and have a wonderful summer!

Love,
Shelly

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Hospital Information:

Patient Room: HOME!!!

Children's National Medical Center
111 Michigan Ave NW
Washington, D.C., 20010
202-884-5000

Links:

http://www.spinalcordtumor.homestead.com/sct_kids.html  
Spinal Cord Tumor Foundation
http://www.umbilicalstemcells.com/html/diseases.html  
UMBILICAL Stem Cells - not embryonic
http://www.ninds.nih.gov/news_and_events/press_releases/  
NIH's Press Releases - Spinal Cord Stem Cell R&D and MORE


 
 

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