Timeline

2014

Friday, Feb 14 - Emilie noticed Edward had a slight tremor.

Sabbath, Feb 15 - Edward had slightly more trouble walking than usual.

Sunday, Feb 16 - Edward was still crawling well, but was unstable sitting up in the bath.

Monday, Feb 17 - We called the pediatrician's office, but it was closed due to snow. Edward was still crawling fairly well.

Tuesday, Feb 18 - The pediatrician, Dr. Jennifer King, was very concerned and got us an appointment with a pediatric neurologist in Grand Rapids, MI. VIDEO

Wednesday, Feb 19 - Edward could no longer crawl without falling. The neurologist, Dr. Kipp Chillag, examined Edward and ordered an MRI of the brain. VIDEO

Thursday, Feb 20 - MRI of Edward's brain was normal. We went home tentatively thinking Edward had post-viral cerebellar ataxia. VIDEO

Sunday, Feb 23 - Edward's eyes began to make shaky, rolling movements, which we mistook for nystagmus, which would've been expected with his previous diagnosis. VIDEO

Tuesday, Feb 25 - At our follow-up appointment, Dr. Chillag was very concerned. He explained that Edward's eye movements were opsoclonus, talked to us about opsoclonus-myoclonus ataxia and neuroblastoma, and asked our permission to admit Edward to the hospital immediately. Kameron and Henry went home to gather some things, and Emilie and Edward checked into the hospital. VIDEO

Wednesday, Feb 26 - All blood and urine tests were normal. Edward was prepped for a fused MIBG/CT scan. Henry joined Edward for some playtime in the hospital. VIDEO

Thursday, Feb 27 - The MIBG/CT showed a mass on top of (not in) Edward's left lung. Edward was transferred to the Oncology service, and we talked Dr. Deanna Mitchell, who is now Edward's primary oncologist, as well as Dr. Prasanth Pillai, a hematology/oncology fellow, about the fused MIBG/CT results and our plan of action. Surgery could not be immediately arranged, so we were allowed to go home for the weekend, for which we were very thankful.

Sunday, March 2 - Edward turned 17 months old.

Tuesday, March 4 - Dr. Daniel Robertson placed a central line and took out most of the tumor, but not all, because some of it was inextricably intertwined with the brachial plexus. Oncology took samples of Edward's bone marrow at this time, as well.

Wednesday, March 5 - The bone marrow showed no cancer cells! Praise God! However, a chylothorax was discovered, meaning Edward is leaking lymphatic fluid into this chest cavity and will not be allowed to eat (or breastfeed) until it is resolved. He was put on octreotide and IV nutrition (TPN)

Thursday, March 6 - Edward had a lot of discomfort, and the nurses spent the day and night working towards pain relief. Dr. Robertson informed us that his plan is to continue the octreotide and TPN until Monday, at which point we will do a trial feeding to see if the chyle leak has healed on its own.

Friday, March 7 - Edward received a PCA pump for a couple hours before his medical team decided an epidural would be better. The epidural brought great relief, and both Edward and Emilie slept well for the first time since Tuesday.

Sunday, March 9 - Edward's chest tube fell out.

Tuesday, March 11 - Dr. Robertson successfully ligated Edward's thoracic duct, and placed bilateral chest tubes.

Wednesday, March 12 - Emilie & the nurses noticed an air leak in Edward's left chest tube. After an x-ray showed Edward's left chest tube to be almost completely out, and a partially collapsed left lung due to a pneumothorax, Edward was quickly taken to the OR. Dr. Robertson took out the right chest tube, and replaced the left one. Edward went to the PICU after surgery for further observation and pain control.

Thursday, March 13 - Edward slept and nursed well overnight in the PICU, and continued to improve throughout the day. By afternoon x-rays showed so much improvement that Dr. Robertson removed Edward's chest tube. A short time later, Dr. Theleen came by to take out the epidural. By late afternoon, Edward was moved back to his room on the hematology/oncology floor. He received his first IVIg treatment over 10.5 hours that night.

Friday, March 14 - Edward had a brief adverse reaction at the conclusion of his IVIg infusion, delaying his discharge.

Sabbath, March 15 - Edward was discharged home!

Wednesday, March 19 - Due to prolonged low-grade fever, Edward spent several hours in the ER, had tests, and was given an antibiotic through his port. VIDEO

Thursday, March 20 - Edward sat up by himself and played! VIDEO

Friday, March 21 - Edward did some slow, basic crawling without falling down with each step. VIDEO

Sabbath, March 22 - Edward began crawling more consistently. VIDEO

Sunday, March 23 - Edward walked pushing the kitchen stool. He showed a lot more interest in independent play--reading books, playing with cars, and playing with Henry--than he has since all this started. VIDEO