Serena Whitt

First post: May 26, 2008 Latest post: Dec 31, 2020
Serena was diagnosed with stage IV high risk Neuroblastoma on June 23, 2008.  Two years of intense treatment improved her disease so that it was minimal and stable for about one year. Scans in Dec. of 2010 showed a mild progression of the disease. Serena has been on Millenium (clinical trial phase 2 low dose chemo) for 2 and a half years to keep the cancer cells from progressing any further.  
Thank you all for your support.  Words can not express how grateful we are for your love, support and prayers.

On June 23, 2008 (at age 3), Serena was diagnosed with Stage 4, High Risk, Neuroblastoma Cancer. This is a childhood cancer that is the second most common in children (2nd to Leukemia). However, it only affects roughly 700 children per year in the United States.  Neuroblastoma normally originates in the adrenal glands and then it spreads through the nerves. With Serena, it originated in her left adrenal gland where a hard tumor developed and wrapped around the gland and interfered with the renal arteries. The Cancer also showed up throughout the rest of her body as soft patchy areas which were found along every vertebrae in her spine; and it was found in her bone marrow throughout a large portion of her body including her arms, legs and skull. Current treatments are improving but the long term survival rate is still only in the 30% range. 


*She has completed her entire original treatment plan given at Johns Hopkins: 

-7 rounds of High Dose Chemotherapy

-Numerous surgical procedures including an 8 hour surgery to remove the adrenal tumor

-A Bone Marrow Stem Cell Transplant (from her own body)

-12 rounds of radiation

*When her scans were improved but still not clear-we continued with:

-MIBG therapy- full body radiation where she was kept in isolation for 3 days due to her radioactivity. (given at Sloan Kettering in NYC.) I (Mom) was allowed to be in the room with her behind a lead wall.

Back at Hopkins:


-Another round of high dose chemo-including Irenotecan.*severe allergic reaction

-A 6 month regimen of low dose chemotherapy including temador and topotecan, given at the outpatient clinic and simultaneously, the chemo drug Accutane adminstered at home.


-Serena's Cancer was stable and minimal for about 1 year; roughly the year of 2010. 

-During her stability, our family moved from the Baltimore area to Southern Pennsylvania and due to insurance changes, we transferred Serena's care to CHOP.  (Children's Hospital of Philadelphia)

Serena has been in the Intensive Care Unit several times, 2 times post surgeries, 2 times post bone marrow transplant, and once during the last round of high dose chemo which caused a rare reaction to the Chemo drug-Irenotecan.  It caused a pleural effusion(hole in her lung causing fluid in and around her lungs) She was in the PICU and on life support/breathing machine for 10 days-by far the scariest time-we almost lost her.


Throughout Serena's journey thus far, She has had more blood transfusions than I can count(roughly 100).  She has suffered from difficult side effects both short term and long term.  She has heart(improving now) and kidney damage which has caused high blood pressure. 

Her organ damage made her ineligible to try many other clinical trials with the latest experimental therapies, including antibody therapy 3F8 or CH 14-18.  Since this treatment causes pain, and raises blood pressure while administering it, she has not been eligible for this treatment.
 
The bone marrow biopsies from over the summer of 2009 showed that the NB cells were starting to downgrade to Ganglioblastoma cells(a less agressive form of Neuroblastoma).

Unfortunately, there was some disease progression in December of 2010 Serena has been on a new medication MLN (Millenium) 8237 which is an oral chemo given at home.  Thankfully, her cancer was slow growing when it showed progression. 

Originally we thought the treatment would be done by the summer of 2009; however now we realize that Serena's situation is not simple, but quite complex.  We DO know that fighting Neuroblastoma may be a lifelong war and not just a short battle.  Our focus has changed from trying to "cure" her cancer, but rather now, we are trying to manage her disease as a chronic health condition, while keeping her quality of life as good as possible.  We are so grateful that Serena is doing so well. Our active sweet 8 year old girl (birthday-11/30/04) is going into 3rd grade, is involved in dance and is learning how to play guitar and piano! Thank you from our entire family for your support and for following Serena's story! 

 

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