Josh's Story

Childs name: Joshua
Diagnosis: Ewings Sarcoma of the C-6 vertebra. No mets.
Diagnosis date: October 21, 2004
Childs age: 4
Treatment summary: Biopsy surgery 14 rounds of the standard chemotherapy, 31 proton radiation treatments tumor was in-operable
Proton center: Loma Linda University Medical Center
Oncologist: Held by PPF
Number of treatments: 31 treatments/ 55.8 Gy from C-3 to T-1
Proton dates: 2-1-05 to 3-18-05
Insurance carriers: Health Net PPO
Learn about treatment: Our naturopath told us to look into proton when Josh was first diagnosed. The peds oncologist was not sure about it until she spoke with a collegue of hers who worked at the center where Josh was treated. We also sought 2nd and 3rd opinions from neighboring children's hospitals asking about proton and his treatment protocol plan. All agreed on proton.
Story: Joshua was a happy-go-lucky 4 year old with 4 big sisters until he began walking funny and holding his head to the side one Saturday evening. Walking with his shoulders hunched, he looked like an old man. He was restless and whimpered in his sleep at night. I took him to his pediatrician, a chiropractor and a pediatric massage therapist within the next 4 days. The pediatrician and chiropractor thought he had pulled neck muscles. The peds massage therapist was "very concerned" stating it was not pulled muscles, but she had no recommendation except to come back in a week. After her manipulations, Josh could barely walk and was in extreme pain. That was on a Thursday and he ended up in the ER that evening. A simple neck x-ray revealed the tumor in his C-6 neck vertebra. He was given an immediate CAT scan and placed in a neck brace which he wore for a year 24/7. They were concerned about neck stability. We were put in-patient for the next 11 days. We waited until the following Tuesday to have a biopsy surgery because the pediatric neurosurgeon was on vacation. The pediatric oncologist insisted on that specific neurosurgeon because she was the best and she wanted a large piece of the tumor removed rather than a needle aspiration. A bigger piece of tumor was more apt to ensure an accurate diagnosis. The peds onc told me her best guess was Ewings Sarcoma. I looked directly in her eyes and told her I was praying she was wrong. Sadly, she was correct. We began chemotherapy right away. By the 4th round of chemo scans revealed no visible tumor, but his vertebra was “near collapse”, but “stable at this time”. Josh was diagnosed at the smaller children’s hospital in our area, Emanuel Children’s Hospital, but we also got a second opinion from Doerhnbechers Children’s Hospital and a third opinion from Seattle Children’s Hospital, which was also known as a Sarcoma Center. All of them agreed upon the treatment protocol of 14 rounds of chemotherapy plus 31 radiation treatments and no surgery, because of the location of the tumor and because there was no tumor to remove after the 4th round of chemotherapy. We first heard about proton radiation from our naturopathic doctor. The peds oncs at Emanuel and Doernbecher agreed this would be a good option for Joshua, though they did not know much about proton. We had met with the photon radiation doctor at Emanuel and the possible side effects were very overwhelming. We chose to go to Loma Linda University Medical Center (LLUMC) as it was closest to our home. We knew we would be leaving our four daughters for two months and we knew this would be very difficult. The proton doctor there insisted Joshua would suffer “no damaging side effects”. This we later learned was not true. Though we believe proton is the best type of radiation for pediatric patients in many cases, a radiation doctor should NEVER tell you there will be no damaging side effects. We later learned this facility is not very well versed in pediatric proton treatment and therefore; we do NOT recommend this facility for pediatric patients. We moved into an apartment provided through the hospital’s social worker and began treatment on 2-1-05. By Valentine’s Day Joshua was in extreme pain in his throat and could no longer eat or drink. It was then the radiation doctor told me, “Of course he’s in pain. It’s like he has a 3rd degree burn in his throat!” Joshua went downhill from there as he could not eat, lost over 10 percent of his body weight and had to be put on morphine. We also had to do chemotherapy along with the radiation. He was given an ng tube at this time and began entrail feeds. This was the most difficult time of treatment for Joshua and for us, his parents. Each of our daughters came to visit one at a time, though this helped cheer Joshua, it was very difficult for them to see their little brother so sick. We finished proton on 3-18-05 and we went home to complete his chemotherapy treatments. Unfortunately, we discovered LLUMC had done a very poor job of communicating with our home hospital. By August of 2005, just 6 months after proton, we were finishing up chemo when we discovered why Joshua wouldn’t eat and why he was having difficulty breathing, especially at night. He was diagnosed with an esophageal stricture (narrowing/scarring of the throat) and Subglottic stenosis (narrowing/scarring of the airway) due to the proton treatments. He was given a g-tube (a tube in the stomach) for regular entrail feeds and put on a feeding pump at night. We also began regular esophageal dilations (a day procedure requiring sedation), which we continued approximately every 6 weeks for 3 years. Joshua has been eating by mouth completely without any need of dilations for 10 months now! He also had a tracheotomy surgery which enables him to breathe through a stoma (hole) in his neck. Sadly, we have tried to open his trachea (airway) through dilations and have been unsuccessful. At this time the doctor believes his trachea will not grow with his body because the growth points have been damaged. We’ve also discovered damage to his vocal cords and thyroid. He is hypothyroid and on thyroid medication. There is a very involved surgery for his trachea, but no one wants to attempt it now, because radiated tissue does not heal or respond the same as normal tissue. There is also a strong possibility of making things worse. Joshua has continued to be scanned regularly for relapse and though he had two “false/positives” early on, he has continued to be NED (no evidence of disease). We look forward to reaching August of 2010 with NED and then he will be considered in REMISSION! We are thankful for every breath! We are enjoying our life with our boy and his four sisters! Though we do not know what the outcome would have been if we had done traditional radiation, (there surely would have been damage) we still believe proton was the best choice. We do know other families who have done proton at MD Anderson and Boston Children’s Hospital. Their experiences were far superior to what we experienced at LLUMC. They communicated well with the home hospital, they were told realistic outcomes, and they had strong long term follow-up programs. When we called the peds proton doctor who treated Josh looking for help, because of the tracheal and esophageal strictures, she was defensive, protective and offered no help or direction at all. Again, as parents of a pediatric patient we do not recommend LLUMC for pediatric proton.