- C
Peter is our 10 month old baby boy who is the strongest person we know. My husband served in the USMC and at times was scared to death, but not nearly as scared as how we are now. It's every parents nightmare to be told "your child has cancer." Going from a normal, healthy baby to going into a statistic of being diagnosed with Rhabdoid Sarcoma, of 30 cases diagnosed a year in the U.S. We thank God that the tumor popped up in his neck where it was visible to us and that it was in his tissue and not an organ. Popping up over the course of the night on January 23th being the size of a golf ball, we brought our 6 month old at the time to the Emergency Room where they told us it was a swollen lymph node. 5 days after giving amoxicillin we noticed it was getting very hard and bigger. We tried to get him in to see his pediatrician for 3 days, but couldn't so we took him back to the ER. We were refered to an ENT 3 days later and got an ultrasounds and blood work. His platlet counts were high and the Ultrasound showed 2 masses, one significantly bigger than the other one. We were then refered to Geisinger in Danville, PA 2 days later and got a CT scan which showed fluid in the masses. They assumed it was puss and planned to go into surgery to drain it out the next day. In surgery they did not find puss, instead they found tissue. We waited 5 long days for the biopsy to come back, and found out he has Rhabdoid Sarcoma. The ENTs met and felt confident they could remove the whole tumor. 5 days later, February 15th he went back into surgery for 6 hours and they were able able to removed the whole tumor, but left behind some microcells near his jawline. Unfortunately many nerves including 10, 11 and 12 were imbedded in the tumor and could not be saved. As a result of the nerve damage his right eye is more dilated than the left one, the right side of his tongue is paralyzed, his right vocal cord is completely paralyed, he now has a lazy lip, and has some drooping on the right side of his face. They extubated him a few days later but he could not control his secretions at all, and as a result was having a very hard time breathing. They reintubated him and gave him a few days to heal some more, then extubated him again. He was still having a hard time breathing, swallowing, and controlling his syliva. He needed a stable airway to avoid asperating into his lung, which would increase his risk of pnominia or another infection. They then had to bring him back into the operating room on March 2nd to do a tracheotomy and place a feeding tube. He then had his first Chemotherapy treatment that following Monday, and Tuesday a new lump popped up on the left side of his neck. We were then transferred to CHOP (Children's Hospital of Philadelphia) because they are more equipped for this type of cancer and there are more specialists. We got discharged from CHOP May 29th and since we have been hope we have had to bring him back to Geisinger twise, for spiking fevers. Unfortunately CHOP is 5 hours away from our house and traveling expenses are very costly, along with being in Philidelphia alone, and Geisinger is an hour away. Having a mortgage, traveling expenses, additional living expenses and numerous other expenses we were not planning on having at this time is really taking a toll on our family. My husband suffers from PTSD from the military and given our situation it is making his anxiety worse, making it impossable for him to go back to work. Peter's best suppost system is his dad and I, whenevery my husband walks in the room, Peter's face lights right up! Living day by day we want nothing more but to have our baby be smiling everyday, and having his daddy by his side really helps him get through all this. The doctors are expecting to do 12 months of chemotherapy (15 cycles) and watch him like a hawk because this is a very aggressive cancer and the cured rate is 20-40%. We will now be going to CHOP every 3 weeks for chemotheropy, and will be down there for 6 weeks in August-September for Proton Radiation on his neck, along with traveling to Geisinger every week for blood work and for when he spikes fevers. We are turning to God for guidance for he is the ultimate physician. Please pray for our baby boy! He needs as many prayers as possible to get him through this! God bless you all!

