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Hero #7 Updates
| Hero Family #7 |
 Our journey began when Kristofer was 19mos old. June of 2009, Kristofer began limping. We noticed a white dot on his foot but that was nothing but the catalyst to begin the limping. We took him to our pediatrician, his associate, back to the pediatrician after trying their protocal. We were then sent to a pediatric orthopedist. She took x-rays and sent him to a non pediatric hospital to do a bone scan. We asked to be sent to Children's and she said I send all of my patients there and if he needs to go to Children's they will send him there. Bone scan according to them was clear, so they sent up home with toxic synovitis and told us to give him tylenol for 10 days. (We had been giving him tylenol for 10 days, waiting for our appointment with the orthopedist office.) On July 20th, we returned to her office with the continual limp; she finally sent us to Children's to the rheumatology department. He told us it wasn't arthritis and there were three options: torn ligament, an absess in his muscle, or something worse. (IN my gut, I knew it was the something worse). He ordered an MRI (which the non pediatric hospital didn't have available) for 3 days later. Later that night, when I was getting Kristofer ready for bed, I noticed a lump in Kristofer's groin. We set up an appointment with his pediatrician the next morning. She didn't think it was a hernia, so she said to try and get the MRI moved up. We had our MRI Wednesday morning and at 3:23pm the rheumatoligist called to say, "that he was very sorry but Kristofer has a large pelvic mass and it doesn't look promising. He set up an appointment for 11am the next morning with Dr. Jake in the oncology department. So very sorry." My worse nightmare was confirmed. We met with Dr. Jake and set up a plan. He was going to be admitted that night to have a CAT scan done and then the next morning he would have a needle biopsy done and bi-lateral bone marrow asprites. 
 We came in on Monday, had the best surgeon, remove about two sugar cubes worth of the tumor. We went home and watched the site get redder and redder. Wednesday we were back in getting sonar of his leg to make sure there wasn't a clot, this caused him tremendous pain. Friday, August 7th, we received our official diagnosis. Dr. Jake came in and said, "well I have good news and bad news: good news is we have a diagnosis and what we hope is a plan, bad news is Kristofer's cancer is Mesenchymal Chondrosarcoma, which is cancer of the cartilage. He is the youngest in the world to have this cancer in his pelvis. His form of cancer usually effects 15 to 35 year olds and there are about 500 cases since 1957. Another thing you should know is that Kristofer's cancer is known to come back, but it's not in his bone marrow and it isn't anywhere else so let's start killing it." We asked for his scans and results to be sent to Dana Farber to make sure we have a correct diagnosis. They agreed so on August 18th, we began chemo. It was to be a three day stay, but his incision site reinflamed resulting in us staying 5 days with another painful sonar. We returned three days later with a fever and mucositis and remained in the hospital for nine days. Went home for a couple days and returned for another round of chemo. This time is was 5 day chemo. He did great with the chemo, but we returned again in 2 days with a fever. This time however, he ended up with the mucositis in his bum and cried and cried everytime he had to go to the bathroom. We rescanned at the end of September to see if the tumor is shrinkin or growing, so that we could plan our next course of action. The scans showed it was growing. We met with a recommended orthopedist and he was going to set up his surgery date and time; collaborating with a urologist, a general surgeon, and plastic surgeon. On October 9th, Kristofer underwent a 14 hour surgery. Within the surgery, they discovered that they couldn't save his leg by just removing his pelvis because the tumor had encassed the important arteries and ligaments necessary for proper function. As a result, they removed his tumor, leg, pelvis, and hip. They sealed up the hole by creating a patch from skin and muscle in his lower thigh. It healed beautifully!!! On November 13th, we rescanned (all clear); and began 1 of 12 more rounds of chemo. We return to Children's hospital every three weeks for alternating three day and five day chemo. We rescanned on March 5th and with God's blessings our scans came back clear. We have completed 9 rounds of chemo (including the 2 prior to surgery) with 5 rounds to go. Thank you for taking the time to read about Kristofer's journey thus far.  |