On February 14, 2001, my daughter Madalin Starr, developed a barely noticeable shiver. At 16 months old, she had always been healthy and was very active. Along with the shiver came an agitated toddler that wanted nothing but to be held. I made an appointment for the following day with her physician. When I set her on the baby scale, the entire thing vibrated along with her tiny body. Madalin's doctor noticed not only were her muscles twitching, so were her eyes. He sympathetically informed me he had never seen this sort of thing before. The only thing close was a brain tumor. Madalin was admitted to our local hospital in search of a brain tumor. At this point when trying to walk, she would veer to the left and loose her balance. The first night as she lay in her steel crib jerking and twitching uncontrollably, she declined. The following day, we took her to Children's Memorial Hospital in Chicago, IL. This was only 48 hours after the onset of symptoms and she was unable to walk. It would only be a few hours before she could no longer sit up. As we were in a strange city, terrified for our baby, a resident doctor informed us she would need a spinal tap. Madalin was examined by a pediatric neurologist who had actually seen this before. He diagnosed her with Opsoclonus-Myoclonus Syndrome and said he felt it was related to a neuroblastoma (tumor). So it was cancer, just not in the brain! The scariest thing I have ever heard is " Your baby has cancer but it is the least of your worries." The tumor was removed and Madalin was put through a battery of invasive tests. We were taught to give her Acth injections, to test her urine for glucose and her stools for blood. When we brought her home, she was lethargic and would just stare. She was unresponsive and was unable to support her weight at all. She would cry unconsolably most of the time and I spent hours walking with her. I had no idea if my sweet little girl was still in there. Slowly, she started coming back to us. What a relief!
When Madalin first started on the Acth, her blood pressure soared reaching a astounding 197/177. Since, she has been on Lasix (a diuretic) and Endural (for bp). She went through four, 21 day cycles of Cytoxan (chemo). She has done well on the steroids (acth), with few symptoms on a high dose. Lowering the dose causes her symptoms to come back. Unfortunately, the side effects of the Acth are dramatic. A year later, she has gained 20#. She is two and already wears a size 6; all way to long of course! She doesn't sleep well and cries alot. She is in speech therapy for a severe articulation disorder. We have just started developmental therapy and physical therapy. Maddy is 31 months and scored 27 months on her developmental evaluation. We were very pleased to hear she is only a few months behind. She still hasn't regained some of the skills she had before she was sick. We recently took Maddy to the Pediatric Myoclonus Clinic in Springfield IL. Dr. Pranzatelli examined her and feels she would benefit from IVIG. His hope is to lower the Acth and prevent a relapse. Madalin's previous doctor has talked with us about her being on Acth permantly. It seems she won't be off any time soon. I had hoped for more but at least it is something. The steroids are so hard on her body. Last summer she was so swollen she could barely play outside. Her heart would beat so hard and she would be panting. I feared a heart attack. |
