Madeleine had just had her 9 month regular check-up with her pediatrician. Everything was fine, she was developing normally and our pediatrician was quite pleased with her. She received her vaccination and we headed home. Later that evening I noticed that Madeleine was moving her left leg less, and thought that maybe it was simply because she was sore.
Over the next couple of days Madeleine stopped moving her legs at all. She was no longer rolling over, crawling, sitting up or moving her legs. Obviously we were quite concerned and called her pediatrician’s office. Once there, we were referred to the ER at Seattle Children’s immediately because their cause for concern was so high.
On July 23rd, 2010, Madeleine was diagnosed with Stage III, Intermediate Risk Neuroblastoma with severe spinal compression in her left upper chest spread over the T-1 through T-5 vertebrae. We later learned that this was one of the worst spinal compressions they had ever seen and were not very hopeful that she would recover the damaged nerves and be able to use her legs again.
Madeleine spent 5 days in the hospital receiving emergent chemo for three days and also had surgery to do her bone marrow biopsy, tumor biopsy and port-a-cath surgery. She had an MRI in the ER, a CT Scan later and once released from the hospital we came back for her MIBG scan. She was also prescribed a steroid to help reduce the swelling surrounding her spine to try to reduce the damage to her spinal cord.
We were so happy to hear that all of the genetic markers/indicators of high-risk neuroblastoma were negative for her. Her tumor had also not metastasized or spread to the bone marrow. All very very good news. Her prognosis was good.
After we were released from the hospital, we continued care with lots of clinic visits for labs and check-ups.
She received 2 rounds of chemo and then had another MRI scan to see what the tumor was doing. The tumor had shrunk significantly, releasing a large part of the compression on her spine. At this point the tumor had shrunk back to the left side of her body and was no longer passing over to the right side of the spine. Sadly, she had not recovered any of her leg movement at this point and the doctors prepared us that the likelihood that she would recover movement was getting more and more slim as time went by.
While all of this was going on, we were also meeting with physical therapy, rehab and neurology for comprehensive treatment for Madeleine.
We went forward with 2 more scheduled rounds of chemo. After the 3rd course of chemo – about 6-7 weeks into treatment – we began to see more movement in her legs. Over a period of a couple of weeks we saw dramatic improvement, with both legs now moving. She was sitting unassisted again, army crawling again, rolling over, wiggling, etc. Her doctors were both shocked and thrilled at this recovery. We have been told that they have never seen a patient with as devastating an injury as she had, go for as long as she did and still recover. She truly is a miracle!
With continued physical therapy we learned that all of her muscles have come back and are functioning. Her left leg is still slightly behind her right in terms of strength, and have been given regular exercises to do with Madeleine to help her strengthen these muscles. We are also working to get her up on her hands and knees to crawl and then learn to walk.
After the 4th round of chemo, we went in for another MRI to see how these courses affected Madeleine’s tumor. When we saw the results, we found out that the tumor has not seen as much shrinkage as it saw the first time. Based on this, it was decided that tumor resection would be the next logical step.
Madeleine had surgery on Monday, November 1st for a robotic surgery to remove the remaining tumor in her chest. Lots of kids live with Neuroblastoma tumors, however it was decided that her location of tumor would cause lung complications in the future should they leave it. The first 24 hours after surgery were very difficult, as they had a hard time managing Madeleine’s pain, but once they had that under control, she was doing much better. She slowly weaned off of the Morphine drip, and we were finally discharged from the hospital.
Since her tumor resection, she has had her port removed and is due to go in for another MRI on January 3rd, 2011. She has continued with Physical Therapy and is making progress in leaps and bounds. We’ve called her our little monkey for a while now, but now she truly is a monkey – climbing all over us when we’re on the floor playing with her and getting into everything!