How can I get through a cancer diagnosis?!
Question: My five year old daughter Amelie has just been diagnosed with terminal bone cancer. It is inoperable and she has about a year to live. It breaks my heart to see her in so much pain everyday, and her combing her fluffly blonde hair just to see it come out in clumps. What can I do to make her last year fantastic? I asked her what was her dream to do, and she said she "wants to be with mummy, Maddie (her older sister), daddy and Adelaide (her 2 year old sister)" I want for her to have all she ever wants, but we don't have much money. Is there anything I can do to get through this, give her the best year ever and still have money for her ffuneral? I am sorry, I can't write any more, I cry too much.
Answers: My five year old daughter Amelie has just been diagnosed with terminal bone cancer. It is inoperable and she has about a year to live. It breaks my heart to see her in so much pain everyday, and her combing her fluffly blonde hair just to see it come out in clumps. What can I do to make her last year fantastic? I asked her what was her dream to do, and she said she "wants to be with mummy, Maddie (her older sister), daddy and Adelaide (her 2 year old sister)" I want for her to have all she ever wants, but we don't have much money. Is there anything I can do to get through this, give her the best year ever and still have money for her ffuneral? I am sorry, I can't write any more, I cry too much.
The first thing you need to do is find a second or third opinion. Pediatrics rarely give up so soon . . you have an entire year and probably much longer to seek effective treatment for your child. There are new treatments available that you need to investigate. You need a new and competent medical team if that is the best they can offer. Go to a major medical cancer facility if you cannot locate a sarcoma program. Many children can survive these diseases so I have no idea why a pediatric oncologist would ever tell you that it was terminal. I would suspect misdiagnosis and take your child immediately to a more reliable medical facility.
NCI: Designated comprehensive cancer centers
http://cancercenters.cancer.gov/cancer_c...
If she has a bone cancer than it is probably Ewings sarcoma or Osteosarcoma, thus she should immediately be seen at a Sarcoma center or at least by a sarcoma specialist.
Sarcoma Centers
http://www.sarcomaalliance.com/centers.h...
Osteosarcoma
http://www.cancer.org/docroot/CRI/conten...
Liddy Shriver Initiative
http://www.liddyshriversarcomainitiative...
Also join the online email groups where you can locate information about this disease and support from parents going through this process:
ACOR: Osteosarcoma
http://listserv.acor.org/archives/osteo-...
ACOR: The Ewing Sarcoma Online Support Group (cancer)
http://listserv.acor.org/archives/e-sarc...
PED ONC: Bone Cancers
http://www.acor.org/ped-onc/diseases/bon...
Cure our Children - Ewings sarcoma extensive information
http://www.cureourchildren.org/
And, as for pain . . there is no reason at all for your child to be in pain as there are pain management specialists that work with the pediatric oncology team. Your description indicates that her case is being mishandled. You need to go immediately to a proper facility that understands childhood cancer and the unique needs of these patients. My son has never had pain at all and he is a stage IV sarcoma patient.
Good luck. There is always hope.
Just do small things that you know will make her smile, and just remeber to PRAY!!!
just by the sounds of it spending as much time with her as possible is what she wants. I would also suggest joining a cancer support group that you can go to and talk about what's going on with your family. You don't need money to make the best of things for her, just being there and spending time with her is the best things you can do. This is a tragic situation and my heart, thoughts and prayers are with you and your family during this difficult time.
I would look into one of the saint jude childrens research hospitals in the united States. They do not turn any one down because of money and have the top treatments they can cure your daughter.