Kylie The Super Fighter! Post #46 8 AM



[the home stretch]

The following information provided by Kylie’s family and Kylie’s website:
On Nov 14, 2002, at age 6, Kylie was dignosed with stage IV Neuroblastoma, an aggressive childhood cancer. She had also tested positive for Neuroblastoma in her bone marrow...

Since dignosis,she's been through 30 rounds of chemotherapy, a 3 hour surgery to remove the main tumor, right adrenal gland and 4% of her right kidney, 36 treatments of external radiation to various affected areas,1 Broviak line,(currently a mediport, since sept.2003),
a stem cell harvest(Feb.2003), stem cell transplant(July 2003), 10 rounds of a drug called Acutane, a very high number of shots and pokes, 3 fresh frozen plasma, well over 100 platelet and about 80 blood transfusions, including countless scans and other tests.

She was said to be in remission July of 2003, her bone marrow was cleared.(Praise God!)

In March of 2004,she relapsed.

In July of 2004, Kylie went to Philladelphia, PA for treatment called MIBG therapy. This treatment involved infusing her with a high dose of internal radiation, and being in isolation for at least 5 days. She was declared.

Her disease showed up again in March of 2005, so Kylie underwent a 2nd round of MIBG therapy in Philadelphia, with a stem cell rescue. She was declared NED again, so, while still being seen at the Cleveland Clinic, Kylie was enrolled at NIH(National Institute of Health)in Bethesda, Maryland(June 2005).to participate in a study for ABT-751 an oral chemo-type pill (the purpose was to keep her status of NED for as long as possible, because in essence her cancer could and would break through again). Kylie had just completed her 2nd round (July 2005) and relapsed. The doctors then tried a different chemo combo.

In August 2005, Kylie became a big sister to a little sister. The same month, Kylie’s family found that the chemo they were trying, was not working and Kylie’s cancer was , in fact, progressing.

So in Sept.2005, the family traveled to Houston, Texas for an experimental treatment involving Kylie’s very own lymphosites and antibodies.

October of 2005, Kylie became symptomatic again. To alleviate pain and control what they could, Kylie again started more chemo. Her bone marrow, so far, has remained negative(clear since July of 2003.Praise God!)....


DEC.2006 Kylie started a chemo combo known as Avastin/irinotican. She also received a new mediport.

In Feb 2006 Kylie was hospitalized for 9 days for severe pain and the inability to walk. She finished up her Avastin/irino combo and had radiation done to her left hip and right ankle. A wheelchair was ordered.

March 2006 Kylie CAN walk but only short distances.

June 2006 There are no options currently available, Kylie is now on Hospice/home care. Not without hope.

Kylie has never let this cancer get her down; she’s a real fighter, She loves to sing, (she loves Hillary Duff and Christian music), She has 2 cats, some fish, and a puppy that she adores. She's your typical kid that wants to be a Veterinarian someday.

She did get a Make A Wish in October of 2003. She took her friend Kristen with her to Disney World in Orlando, Florida.

Her current dream is to visit all 50 states. Something that she virtually accomplished through postcards! (thanks so much to Western Reserve , friends and family).

My thoughts on the beautiful Kylie: My thoughts and prayers are with her and her beautiful family everyday. Please send yours as well during this difficult time in her illness. Kylie and her family are an awesome example of the kind of person I want to be!!! Much love! Please visit Kylie here: http://www.caringbridge.org/oh/kylie