We found out Daniel had a tumor on April 24th after he had been sick for months with headaches, on and off vomiting, and pain between his shoulder blades. He had two surgeries to remove tumors. Brain surgery was April 26th, and spinal surgery was April 28th. He was diagnosed in early May with Medulloblastoma, an aggressive mestatic form of brain and spinal cancer. He was diagnosed at an M3, which is like stage 3. This form of cancer has 4 stages. The 4th stage is terminal. Daniel was given a 20% chance of making it 5 years. Daniel made it through surgeries like it was a walk in the park. Never giving a pain register of more than a 3. Often saying he had no pain, just a headache. Daniel’s spinal cord was damaged during his spinal surgery. He lost some use of his right leg and function in his right arm. We were told by doctors that Daniel would need to stay admitted until at least late June, but my sweet little super hero wasn’t having any of that! Someone made the mistake of telling him that once his drain came out from the swelling of his brain, they would let him go home if he could walk to the bathroom. Daniel lasted two days after his drain was removed, and then showed multiple doctors how he could walk to the bathroom with the help of mommy. Two weeks after brain and spinal surgery Daniel was home!
Daniel got some time at home with us before starting his 5-day-a-week chemo and radiation treatments. On May 25th we began our new schedule of waking up at 4:15am, Monday-Friday to head to Randall Children’s Hospital for his chemo, then off to Good Samaratin for radiation at 7:30am. The chemo and radiation treatment was really rough on him. He lost an incredible amount of weight, now trying multiple feeding tubes, and different mixtures of formula in the feeding tubes before discovering that Daniels body would not accept it. He was losing more, and more weight. He was eventually placed on a TPN (total parental nutrition) a mixture of just vitamins, and nutrition that was done intravenously through the port he has in his chest for chemo. Daniel started off at 42lbs on TPN, and has now made it up to almost 50lbs! Daniel has now finished his first round of chemo and radiation. He then gets a 4-week break! He has already started to be less tired, he can eat more, and has less nausea.
Next week we start his two weeks of physical therapy and then a one week break before starting his next round of chemo. Daniel will hopefully be up and walking when we do his (makeup birthday party) the end of this month. We unfortunately had a stint back in the hospital on his actual birthday, and his counts were too low to have people around him.