| |
 |
| ZACHARY Zach's story is written by his mum, Christy. |
| Our story begins on Dec 9, 1993. Our son Zachary has turned 3 months old this day. My husband and I are told to take Zach to an ophthalmologist because his pediatrician has noticed something behind his eye at a well baby check up. At this point I know something is wrong because Zach has a lazy left eye, it is almost completely turned in. But I know that is a common thing with newborns so don’t think too much of it. Mike and I wait nearly 2 hours past our original appointment time to see the ophthalmologist. We are the last patients in the office when it was finally our turn. The three of us go into Dr. Royo’s office and his nurse comes in to put dilation drops in Zach’s eyes. After a few minutes she comes back in and takes a quick look into his eyes and says “I see them”, then leaves very quickly. The doctor then comes in, turns out the light and looks into our son’s eyes. Before he even makes it back to the light switch he says “I don’t have good news at all, it’s NOT good”. Then he proceeds to inform us that Zach has tumors in both his eyes and they are possibly life threatening. The rest of the day is pretty much a blur for me past that point. I remember the doctor telling us about this Doctor in San Francisco who specializes in this type of disease, and asking if we could be in the city by 7am the next day. We left that same night. My mom flew out from Colorado to be with us during that initial visit. The next day is also a blur. We arrived at UCSF at about 7:30 am. I was like a zombie. I had spent the whole night before crying and not sleeping. I couldn’t hold my son at all. I couldn’t stand the fact that his beautiful blue eyes could take his life. First off we met Dr. O’Brien. I immediately felt at ease somewhat when I met her. She dilated Zach’s eyes and told us about Retinoblastoma, and that it was a rare form of childhood cancer that affects the eyes. That was the first time I had ever heard of the disease. The rest of that day was spent with many doctors trying to pinpoint the best treatment for Zach. We were at the hospital from 7:30am till 4:30 pm and I can only account for 2 hours of that day. The rest is pretty much blank. Dr. O’Brien and her collogues had decided that Radiation was the best course of treat. Back then, chemo didn’t work and Zach’s tumors were too large for Plaque. Zach had 2-3 tumors in his right eye that were adjacent to his optic disk, in other words, right in his center of vision. Zach also had a very large tumor in his left eye, I saw the CT scan and it appeared as though the tumor took up the whole globe of his eye. We were also told that Zach would be legally blind at best, but that was the least of our concerns. We also learned that the life saving radiation could in turn cause new tumors to form later in life that were far more aggressive then the RB that was threatening his life at that moment. We also learned that Zach would have facial deformities from the radiation because it stunts the bone growth. Well, we found out on a Thursday about the cancer and that following Wednesday Zach started radiation therapy. He had it 4 days a week, and because of his age, he had to be put under a general anesthesia for his treatments. Zach completed 6 weeks of radiation therapy. From that point on, we would go to UCSF every 2-6 weeks for EUA’s, exams under anesthesia, for the next 5.5 years. In those years, Zach had several reoccurrence of tumors and when he was 2.5 years he had developed 3 new tumors in about a 4 week period. Thank God all those tumors were small and because Dr. O’Brien kept us on such a tight schedule, we were able to treat those tumors with laser and cryo. When Zach was nearly 4 years old it was apparent that his left eye could not be saved anymore. The tumor, although fully calcified, still remained large and it was obvious that Zach was completely blind in that eye. Zach’s retina in that eye also had a hole in it and was detaching. Zach also had a very aggressive cataract. So we made the decision to have that eye enucleated. He tolerated the surgery fairly well, but had to spend a couple of days in the hospital because he had a hard time with pain. Zach is legally blind. He has no vision in his left eye and only has peripheral vision in his right. He goes to public school and is in a mainstream class room. The only difference in his education is that he receives vision services from the district. He does read Braille and has special equipment to help magnify print. He’s now 10 and is very active. Most people don’t even know that Zach is mostly blind. Sometimes I think Zach forgets it too. My husband and I have done everything we can to make sure that Zach has a “normal” life. We don’t let his disability become a handicap. Zach is a very bright student, in fact one of the brightest in his class. He is well liked by his classmates and has a lot of friends. He’s also joined Orchestra this year and is learning the viola. It’s almost surreal for me to think about what my husband and I have gone through with Zach. It honestly seems like a dream. It has been a very hard emotional struggle for me. His chances of secondary tumors increase every year because of the life saving radiation he had as an infant. That’s a very hard realization to live with day in and day out. But Zach is such a wonderful spirit, it’s definitely worth it. We also have a 4 year old daughter named Mackenna. She does not have RB. I’ve learned so much over the last 10 years. It was literally thrown into my face NOT to take life or love for granted, and that we are all on loan from the heavens above. Life is full of changes and is very unpredictable. I’ve also learned how to make the choice of feeling like the luckiest mom in the world, and to choose how not to dwell on the past or the uncertainty of Zach’s future, it does me no good. I have my bad days of course, but they are short lived and I get on with the beautiful life that God has given me. |
 |
 |
 |
 |
 |
 |
 |
| "Jurasic Park" theme. by John Williams |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| ORPHANS OF THE CANCER STORM |