Bells Believers
Donation protected
Bell was born with Neurofibromatosis 1. NF1 is a genetic disorder that causes tumors to grow throughout your body. It effects approximately 1 :3000 births. One of her sisters and mom also have NF 1. Bell was also born with Occular Albinism which caused her to have Nystagmus (a horizontal back and forth movement of her eyes). Her sister with NF1 also has Occular Albinism and Nystgmus. Both Bell an...d her sister are legally blind.
Bells mom noticed a lump on the right side of her neck when she was 2 years old. After many Doctors visits and scans the plan was to watch it. While watching it continue to grow, Bells Mom got many opinions. Everyone agreed that the tumor was to dangerous to remove because it was encasing her aorta and jugular.
With increasing size of her plexiform tumor came increasing pain and in Jan 2012 we decided to start a trial chemo pill to shrink the tumor. Her neurologist at the time said everything looked good and it was a go. An Oncologist at the top of the trial study had to review Bells most recent MRI to get final approval.
On March 1, 2012 her neurologist called and said she had Cancer the tumor had turned malignant and was now know as an MPNST ( malignant peripheral nerve sheath tumor). Thank God the oncologist reviewed her scans and found the cancer! She then didnt qualify for the trial and while not only need in patient chemotherapy but also surgery and proton(radiation) therapy.
After undergoing months of chemo, proton and surgeries, we learned she kicked cancer to the curb on Nov 1, 2012! Although the cancer was gone the tumor remains.
She also has a tumor near her bladder, in her chest cavity, under her tongue and in her cheek and the one in her neck that they continued to watch with MRIs every 3 months.
Had her port removal surgery in July 2013. The concerning tumor remained to be her mpnst in her neck. With her pain increasing we went in Aug and learned it was growing again. Decided to do another scan in 2 months instead of 3 and prescribing her a nerve medicine to help with the pain with the neck and cheek tumor. October 15th , 15 days before her 1 yr cancer free anniversary we learned Bell had a brain tumor( optic glioma). The mpnst hadn't grown enough to be concerned. Waiting 2 more months to see if the brain tumor had grown in December we learned it has doubled in length.
She would have to start this whole process over again.
She began chemo (Vincristine/Carboplatin) on Jan 7th and will receive 60 chemo treatments. More awareness needs to be brought for Neurofibromatosis and Childhood cancer.
Bell lives with her mom and 3 older sisters in Indiana and they are her biggest supporters and love her very much. She also has a great Uncle Chris and many cousins and many friends who love and support her very much. She will be 11 on Feb 10th and has endured more in her short years then some people do in a lifetime.
update as of 10-29-14
Bell has also been diagnosed with scoliosis and is allergic to one of the chemotherapies she is on . If she continues to have reactions with the pre treatment meds shes receiving a change will be put in place. All her tumors are all stable at this point but if her plexiform in her neck continues to cause her pain her Oncologist will order a PET scan to make sure there isn't a reoccurrence of cancer in that area. There is a very high reoccurrence rate with that type of cancer(mpnst) .
I would like to thank you all for believing in Bell and sending her and our family many prayers and kind words throughout this journey !
Bells mom noticed a lump on the right side of her neck when she was 2 years old. After many Doctors visits and scans the plan was to watch it. While watching it continue to grow, Bells Mom got many opinions. Everyone agreed that the tumor was to dangerous to remove because it was encasing her aorta and jugular.
With increasing size of her plexiform tumor came increasing pain and in Jan 2012 we decided to start a trial chemo pill to shrink the tumor. Her neurologist at the time said everything looked good and it was a go. An Oncologist at the top of the trial study had to review Bells most recent MRI to get final approval.
On March 1, 2012 her neurologist called and said she had Cancer the tumor had turned malignant and was now know as an MPNST ( malignant peripheral nerve sheath tumor). Thank God the oncologist reviewed her scans and found the cancer! She then didnt qualify for the trial and while not only need in patient chemotherapy but also surgery and proton(radiation) therapy.
After undergoing months of chemo, proton and surgeries, we learned she kicked cancer to the curb on Nov 1, 2012! Although the cancer was gone the tumor remains.
She also has a tumor near her bladder, in her chest cavity, under her tongue and in her cheek and the one in her neck that they continued to watch with MRIs every 3 months.
Had her port removal surgery in July 2013. The concerning tumor remained to be her mpnst in her neck. With her pain increasing we went in Aug and learned it was growing again. Decided to do another scan in 2 months instead of 3 and prescribing her a nerve medicine to help with the pain with the neck and cheek tumor. October 15th , 15 days before her 1 yr cancer free anniversary we learned Bell had a brain tumor( optic glioma). The mpnst hadn't grown enough to be concerned. Waiting 2 more months to see if the brain tumor had grown in December we learned it has doubled in length.
She would have to start this whole process over again.
She began chemo (Vincristine/Carboplatin) on Jan 7th and will receive 60 chemo treatments. More awareness needs to be brought for Neurofibromatosis and Childhood cancer.
Bell lives with her mom and 3 older sisters in Indiana and they are her biggest supporters and love her very much. She also has a great Uncle Chris and many cousins and many friends who love and support her very much. She will be 11 on Feb 10th and has endured more in her short years then some people do in a lifetime.
update as of 10-29-14
Bell has also been diagnosed with scoliosis and is allergic to one of the chemotherapies she is on . If she continues to have reactions with the pre treatment meds shes receiving a change will be put in place. All her tumors are all stable at this point but if her plexiform in her neck continues to cause her pain her Oncologist will order a PET scan to make sure there isn't a reoccurrence of cancer in that area. There is a very high reoccurrence rate with that type of cancer(mpnst) .
I would like to thank you all for believing in Bell and sending her and our family many prayers and kind words throughout this journey !
Organiser
Dawn Miller Majors
Organiser
Delphi, IN
