His Story:
From July 2005 Saxon endured 4 rounds of chemo then a surgery to remove his 6th and 7th ribs, as his tumor responded well and shrank from the chemo. Initially the tumor was wrapped aroung his right 2nd to 7th rib. His 2 ribs were then replaced with synthetic ribs. He underwent 10 more rounds of chemo for 3-5 days every 17 days until May 2005. On May 31, 2005 he went home in the beginning of what was supposed to be a "remission". He did not attend school that entire year, which was his 7th grade year at Seneca Valley Middle School, Harmony, PA. Saxon was eager to get back to his normal life and pick up with friends again.
He has one older brother Shane, 22 yrs old who attended IUP, studies exercise science & played hockey for IUP. Saxon lived with his mother, Diana and stepfather, Jerry. He also shared his home with 5 dogs, 1 cat and a huge fish, Oscar. He loved extreme sports. His passion was dirt biking, quad or snowmobile riding. He was very good at shooting pool and received a beautiful pool table as his Make-a-Wish request. He was a Pittsburgh Penguin fan and of course a Pittsburgh Steeler fan, especially of Troy Polamalu. He was a pretty good cook and made great stuffed peppers, home made pierogies, stew and meatloaf. He had a zest for life and was well known around his town of Harmony, Pa. Those that knew him spoke highly of his “gift for gab” and his socializing skills. He was a dreamer, had a huge heart and had matured quite fast with the disease process. He really missed his friends, as he did not have the chance to see them often due to the reoccurrence of his cancer in late August 2006. He was only able to attend 6 weeks of his eighth grade year before he had to undergo treatment again. Of all of the things that he has had to endure over this hard time in his life, it is the time lost with friends and activities that he treasured that had hurt him most. However, his friends didn’t drive yet and many were busy with outside activities and weren't available to visit that much. Saxon however, remained a positive spirit.
The Reoccurrence: It completely took all of us, his family, off guard. He was experiencing symptoms that mirrored the initial symptoms, which was pain in the right chest wall, shortness of breath and fatigue. We, including the oncology specialist, felt it was result of his body still adjusting after a year of sedentary activity and grueling treatment. Also, his doctor said many of the symptoms were from “growing pains” naturally occurring in boys going through puberty. Everyone grabbed onto those explanations believing that there couldn’t be any other reason for his complaints so soon after treatment. Diagnostic tests were ordered for Saxon to complete but with a relaxed time frame to accomplish them in as no one suspected that the cancer was back or we didn’t want to think it. In late July 2006 x-rays were taken showing what appeared to be scar tissue in the right post-operative chest area, in early August Saxon completed an MRI with the same results depicting what appeared to be scar tissue. Saxon continued to have an increase in symptoms and I as his mother started to feel in my heart that it was back. Maybe I did sense it much earlier but I couldn’t bear to entertain that possibility. Saxon and I had just left Children’s Hospital one beautiful September day around the 20th after completing a bone scan when my cell phone rang. Saxon’s oncologist was calling as I recognized the number all to well. I didn’t even have to answer because I knew what she was going to tell me. She didn’t want to tell me over the phone but she needed us to turn around and come back to the hospital as soon as we could that day for another scan. Based on all the completed scans they though that he had metastasized to both sides of his neck and his groin and it definitely returned to his right ribs again attaching to the right lung. He was scheduled for surgery on October 3rd 2006. This time around the surgeon removed four ribs, half of his diaphragm, and 2 wedge sections of the right lung except the ribs were not replaced. After that Saxon has gone through 6 weeks of daily radiation as well as four high dose chemo treatments for 5-6 days at a time and more treatments were tentatively planned. He was a candidate for a stem-cell rescue but he then failed two attempts to collect his stem cells because his bone marrow was exhausted as told to us by the doctors. I then put him on an herbal program and we were granted a compassionate use of a drug called AMD-3100 which assisted his body to force the stem cells into his blood stream and consequently be collected for the cell infusion which was done after a Pet Scan showed that he was in a temporary but complete remission, a perfect state to collect stem cells and plan the infusion date. I believe the herbal meds helped him at that time to achieve a clean P-scan and boost his immune in just 3 weeks post a failed stem cell harvest. The docs asked me to take Saxon off of the herbals about 2 weeks prior to the stem cell infusion date which I complied with. Prior to all of the stem cell harvest attempts and between the first 2 of them poor Sax had been in the hospital at least 5 of 7 weeks since about 1 1/2 weeks before Christmas 2006, either in partial or whole weeks for infections, harvesting attempts or chemo and I have stayed at all times with him. The goal was to take his harvested stem cells, give him super high dose chemo called myeoblative therapy and then introduce the new stem cells back into his body thereby giving him a new chance for a life without cancer. It appeared to be the most promising treatment but there were no real statistics that it worked as the data hadn’t been collected yet nor would it be for years. However, as a nurse who researched her son's options at all times everything that I read pointed to the stem cell rescue as he was supposed to be in a remission and at Children's Hospital in Pittsburgh, that was the only time they would do the procedure was in a remission. We were full of hope but sadly he was found to be in a relapse right in the middle of getting myoblative chemo to prepare for the stem cell infusion. It was discovered that he relapsed into his pleura and into his right hip bone marrow. We couldn't believe that had metastasized as he never had before and his scans were clear 3 weeks earlier. What made matters worse was the fact that they had to put the stem cells collected just 9-10 days before and I felt they may be contaminated as he may had relapsed sooner. Everything that I read about stem cells was that they should be purged of microscopic cancer cells if possible but Children's didn't believe that it made any significant difference or so they told me. We had no choice if Saxon was to recover from his toxic, hi-dose chemo he had to have some of those cells put into his body. He fought an awful fight and he was so sick trying to recover that I still have nightmares about it. We went home after 4 weeks solid in the hospital and I put him back on herbs but he was so nauseated that he had trouble getting all the herbs down and therefore I think he couldn't quite recover or respond to them as he had in the past. He developed an infection in his Broviac (he also had a medi-port) and again we ended up back into the hospital for 7 days only 11 days of having the privilege of being home. Long story short Saxon never really recovered, grew weaker, metastized to other areas like cancer was a fright train moving through his body. My personal Onc Doc hedged on being realistic with telling me how bad he was but another doc pulled me aside and said he may have 2 weeks to perhaps 2 months left. he was in so much pain on 100 mcg of Fentanyl, 20 mg of valium, 20 to 40 mg of oxycodone, walked barely with a walker and needed a wheel chair to get anywhere. God gave him what I call gifted days where he went to Red Lobster and ate well and a few other restaurants with the family before he passed. I am thankful that I had the sense to sign him into Hospice and quit the Irinotecan (the only chemo he could take due to constant low counts & merely palliative). The wonderful experience Hospice nurse said take him to do something as a family ASAP if you can arrange it because she felt he had less than 2 weeks, it was a Thursday. We went camping on a Friday and he was gone from my arms on Saturday , 6/2/07 and my family was there to help him pass over. It was a and is rather haunting but also we were given gifts from Saxon on Friday night as he told stories, laughed and appeared normal. We miss him but we trust he is watching over us along with the Lord and he is truly at home. One day we will join him. Thank you, The Litzenbergs, Diana, Jerry, Shane & extended family. see www.esbabies.com
for his other pictures and others who fought and keep fighting like he did. Please help fund the cure at www.letsbeathis.org
On the ES Support list his mom is Diana.
