Nathan was diagnosed in February 2010 with a desmoplastic infantile ganglioglioma, just five months after his father, Mike, had been diagnosed with bladder cancer. After a few months in Nashville, at Vanderbilt, Mike and I moved Nathan’s care to Duke University’s Brain Tumor Center in Durham. We have been in Durham almost 20 months now.
Nathan’s diagnosis was so devastating and we wondered if he would see his 3rd birthday. He had to deal with surgeries, complications from the tumor, side effects of the chemo, the home pharmacy of over 30 doses of meds per day, PICC lines, allergic reactions, fevers, a NG tube for nearly 10 months and meds every 3-4 hours around the clock. Nathan’s had two major craniotomies, at least six shunt revisions, eight different chemo drugs over three protocols, MRSA and many hospitalizations. He’s even had to learn to walk again – twice more – and lost most of his language and fine motor skills. Thankfully, July 2011 was Nathan’s last hospitalization. His shunt failed twice in one week so he got a new programmable shunt. We have had a very blessed year since!
Spring 2011 brought some relief, Nathan’s chemo drugs changed, we finally got the shunt functioning correctly, the NG tube was gone, he started eating McNuggets, he was down to four doses of meds and continued with PT, OT and ST every day. We were able to finish out the year and the drug protocol.
Unfortunately, Mike’s cancer started to spiral over the summer. Despite everyone’s best efforts – Vanderbilt’s, Dukes and Cancer Centers of America – Mike lost his battle with cancer in December 2011. We were home in Tennessee, surrounded by family. He fought long and hard for himself and Nathan.
January 2012 came and Nathan & I had to get back on the plane to Duke to continue on with Nathan’s treatment. February brought the end of 22 months of chemotherapy. He is on his first official break. “Frankie” (the tumor) has remained stable since last May and is still diminishing. It has been six weeks since the last treatment and the MRI looked good. Nathan is still battling the side effects from the last drugs and going to rehab therapy daily.
We wait for the next MRI on June 8th, praying all will still be stable. There is a chance “Frankie” may never grow again – may just hang out forever. Or, it will wake up and we will start over again. Nathan and I will remain at Duke as long as it takes – close to the hospital and close to the rehab hospital for therapy. MRI scans every 12 weeks and addressing a few complications that have arisen since diagnosis which will include at least one spinal surgery.
Nathan’s development is about two years behind normal. I am so thankful every day that he is able to walk and play. He is so happy, content and loving. His speech is progressing slowly but his communication is exceptional. Physically, Nathan is doing great. He loves pool therapy, his strength and endurance has grown so much. Occupational therapy is difficult as he has some sensory integration issues, but the progress has been phenomenal week-to-week. The progress is slow but we are hoping, as the chemo continues to wear off, to make significant strides in the coming months.
We really don’t know what to expect this year. I hope he goes into remission. I hope it goes away. I hope to go home to family and friends. I hope Nathan can start school. The list goes on and on. However, today is full of grilled cheese, bike rides and Elmo. And I can’t think of anything better than that!!!
Nathan is on the homestretch to his 5th birthday in July. Truly a blessing and a miracle.
BUTTERFLY BLOG for the Brain Tumor Foundation for Children 