Heath's Story written by Karis (mom)

May 12, 2006


RE: HEATH www.heathsupdate.blogspot.com

On January 7th my son Heath fell skateboarding. From the beginning he complained of some pain, but throughout the rest of the month he began noticing the pain in his calf was getting worse. On Tuesday, January 31st, I took him to Dr. Scarano his pediatrician. He thought Heath might have Tendonitis. He prescribed some pain medicine which did not seem to help. A few more days went by and Heath continued to get worse. I called Dr. Sacrano and he referred Heath to Dr. Schafer a Sports Medicine Doctor. The appointment was on Thursday February 08, 2006, by now Heath was in a lot of pain. Dr. Shafer had Heath walk on his heals and then his toes and sent him for an MRI, he also put Heath on pain medication. When the MRI was done the Radiologist saw something other than fractures in the sacral bone. Heath was called back for a second MRI with contrast on Friday the February 10th. He then had an appointment with Dr. Schafer on Tuesday the 13th. Dr. Schafer showed us the MRI and said that he saw what appeared to be fractures, but he also saw something that was out of his field. He referred Heath to Dr. Tally a Neurologist for an appointment on Thursday the 15th. I asked Dr. Tally whether it was a blood clot or maybe inflammation. Dr. Tally believed that this mass was a tumor. He continued to keep Heath on pain med's along with steroids for inflammation which didn't seem to help. Dr. Tally told Heath that if the pain got any worse and if the medications at home were not working that he could admit him in the hospital for pain management.

Dr. Tally's next step was to order a biopsy. Heath immediately went to Manatee Memorial Hospital where they did a needle biopsy of the sacral bone. The results would not be back for at least a week or longer. The biopsy was tested and after a few weeks Manatee Memorial's report came back benign. Heath's pain continued to get worse and yet the second biopsy came back from Stanford University Medical Center benign. We were still waiting for the results from Mayo in Rochester, MN. While waiting for the biopsy results, I asked Dr. Scarano to refer Heath for a second opinion. On February 23rd we went to Moffitt Cancer Center in Tampa, Florida. Heath saw Dr. Douglas Letson the Program Leader for the Sarcoma Caner Program. He ordered x-rays of the sacrum and the pelvis as well as labs. Then on February 27, Heath had a bone scan full body and a ct lower extremity. Still the pain continued to worsen; the pain was coming from the S1 nerve coming out of the sacrum, which affects the sciatic nerve. The pain was nerve pain from inflammation from the fractures as well as the tumor compressing the S1 nerve. The pain began at the sacrum area and continued down the leg to his toes. After days of no sleep and uncontrollable pain, Heath finally decided to be admitted on Thursday March 2nd at Lakewood Ranch Medical Center. While in the hospital Heath was given Morphine Drip and Dilaudid, yet still the pain was out of control.

Finally on Monday morning March 5th, Dr. Letson nurse called and said that Dr. Letson had reviewed Heath x-rays, scans and labs. She said that he saw no visible signs of cancer and with the results from the biopsy's coming back benign that he would refer Heath back to Dr. Tally for follow-up. With relief in sight I waited for Dr. Tally to make his rounds at the hospital. He came in around 4:00 p.m. and to our surprise he had the results from the biopsy from Mayo. The results were Chrondoblastic Grade 3 Osteosarcoma (Bone Cancer) of the sacrum. I immediately called Moffitt and left a message with Dr. Letson and the next day Heath was transported by ambulance back to Moffitt for a second biopsy.

On March 7th Dr. Letson performed the biopsy taking bone the approximate size of a quarter, he also took about a cup of bone marrow. Once again the waiting continues. Heath still needed to remain hospitalized for pain management; the pain spasms were still constant. After working closely with the pain team Heath left the hospital with nine different medications. Finally on Tuesday March 14th Heath was able to go home. As the fractures healed Heath slowly discontinued pain medications. He started his first chemotherapy on Tuesday, March 28th. The first cycle of chemo consisted of Adriamycin and Cisplatin; he requires hospitalization for three to four days, with a Neulasta injection on the fourth day. The second cycle of Methotrexate was given three weeks later with hospitalization for three to four days. Heath has just completed another cycle of Cisplatin and Adriamycin the Neulasta injection will be given today March 12th. He is scheduled for the next chemo on March 26th with Methotrexate.

Heath has been accepted for Proton Beam Radiation Therapy. The tentative schedule for the Proton is sometime the end of October through the beginning of December. Dr. Letson referred Heath to Dr. Delaney at Massachusetts General Hospital in Boston. If Heath were to have surgery it would affect his mobility as well as control of his bodily functions. Because of the nerves coming out of the sacrum he would have some pain after the surgery. The oncologist at Moffitt consulted with Dr. Peter Anderson at M.D. Anderson in Texas. Dr. Anderson has treated several patients that have had very similar diagnosis. The protocol is that the majority of chemo is given in the beginning. Some chemo may need to be given during radiation and after. Heath should complete his treatments sometime in the beginning of 2007.


Karis
MOM