Madeleine's Neuroblastoma History: A recap

At four months of age, Madeleine was diagnosed with a stage 3, intermediate risk Neuroblastoma. Neuroblastoma is a form of childhood cancer. I found a statistic that said that 64 out of a million children get this disease. We've always told her that she's special, but she has taken it to a whole new level. Because she was diagnosed at such a young age her prognosis is very good.



She has a solid tumor that started in her abdomen, and grew into her spinal column. We initially became concerned when we noticed progressive weakness in her legs. On February 29, 2008 (the same date as diagnosis), she underwent a high-risk neurosurgery to remove some of the tumor from her spine in order to hopefully regain movement in her legs. During the surgery the surgeon had to remove a nerve root that was too infiltrated with cancer to save. The neurosurgeon did not seem hopeful that movement would return. Luckily he was wrong and she now has full movement of both legs. We are very grateful for the skilled neurosurgeons, Dr. Levy and Dr. Meltzer, that saved our daughter from paralysis. We were hospitalized for 11 days at Children's Hospital in San Diego.


Madeleine has had four courses of chemotherapy. Two courses in-patient and the last two were done on an out-patient clinic. She has done amazingly well and has had very little side effects from the chemo. We are hoping that she is now finished with chemotherapy. She has a Hickman line, which is like an IV that goes into the heart, for her blood draws and chemotherapy. This line will stay in until the doctors are sure that she will not need any more chemo.


Her recent MRI shows that the tumor in her abdomen is shrinking. She has a surgery scheduled for June 11th, to remove the tumor in the abdomen. We meet with the surgeon tomorrow to discuss the surgery and see if he wants to go ahead with the surgery as planned, or if he thinks that she would benefit from a couple more courses of chemo. We are hoping for surgery, as every subsequent round of chemo adds to the possibility of later complications.


She still has some tumor remaining in her spinal cord. The doctors don't know what to do with it yet, as it depends on the pathology of the tumor to tell us whether it is mature, and no longer causing problems, or if it is still immature and growing. It is possible that she will need another neurosurgery at some point, but we are all hoping that it won't come to that.


Madeleine, at seven months, has already been through a lot. She is a tough little girl and she will make it through this.


Thank you to everyone for all of your love and support. We really appreciate it.


Amber

Video just home from hospital: