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| Da'Monique Da'Monique's story is written by her mum, Aimi. |
| "My Child". Composer/Performer unknown. |
| "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 |
My daughter, Da'Monique, was born on 29 December 04. I knew something was wrong with her eye from birth. I do not speak to her father, but we discussed hereditary conditions when I found out I was pregnant. He never mentioned rb - I am not sure if he knew. On 03 January 06, Da'Monique had her first exam with an ophthalmologist. Two days later, she had an MRI to rule out cancer, because her retina was detached and she had what her pediatrician dismissed as a lazy eye. On 16 Jan 06, she had a ct scan, and was diagnosed with bilateral rb. Da’Monique has a 6 year old sister named Dazia, who has a different father. Dazia says she doesn't want her sister to die. Da’Monique’s Doctor, Derek Hess, recommended we go to Bascom Palmer Eye Institute in Miami, FL asap. I knew the day he ordered the MRI what the outcome would be. I had a gut feeling, but I never would've imagined that this would happen to my child, she is so happy and healthy. She is just happy to be alive! What I wouldn't do to take her place. As a parent, the hardest part is not knowing that your child has cancer, but having to be strong and watch them go through something that no child should have to endure. I named her Da'Monique, which means belonging to God, but I am going to have to fight him on this one. We go to see Dr Timothy Murray at Bascom Palmer Eye Institute, once a month for an EUA, laser and 4 different chemo drugs. Da'Monique’s most affected eye was enucleated in April. I noticed other children who had the same procedure were very different after the fact, healthier, happier. So I see it as a positive. I had no idea how much the eye was holding her back. Prior to the enucleation, she had cellulitis, light sensitivity and some pain and discomfort. It is almost as if she finally came out of her shell - she laughs and smiles even with strangers now, before only with family. We were referred to Scott Garonzik by Dr Murray for her prosthetic eye, and she now has a temporary prosthetic eye, which moves a little. People don't know the difference unless I point it out. Da’Monique is on her 6th round of chemo (July 2006). All of her hair has fallen out, grown back and fallen out again. She has 3 more rounds of chemo - cross your fingers. Most of the families that started treatment when we did have seen such good results that there was no need to carry out the entire treatment. On our last trip to Miami, there was no need to use laser, because the cancer appears to be dying. So far, the chemo hasn't been as bad as I really thought it would be. I find benadryl and zofran are a good combination for the sickness. I haven't figured out what to use for the side effects of the vincristine yet though. Motrin is not strong enough and she is too weak to walk for at least 3 days. I have been able to manage to keep Da’Monique out of the hospital for unnecessary stays for 2 months straight – that’s a record. She has a port in her chest for chemo. Any fever, illness, etc, she is in for 3 days minimum. This whole experience has taught me many things. Medicine is not an exact science, your gut knows best and you know what is right for your child. I refused one EUA due to fever. I have had to fight and go out of my way to explain the reasons why my child doesn't need to spend unnecessary time in the hospital. I have made the Doctors do extra CBC's so they would not postpone her chemo. Every decision I have made, and course of treatment I have suggested was later found to be the best route for my child. Some days you wonder if your are making the right decisions, but if you know your child, and go with your gut feeling, you can't go wrong. Don't be scared to question anything. We also had blood tests for genetic testing to identify who is at risk for this cancer. This won't make things easier on Da’Monique now, but maybe her kids will never have to deal with this disease. I know that Da'Monique is going to be ok. Going to a specialist centre, where they actually deal with Rb daily, and seeing other families and adults who had this as children, and even recurrences has given me hope - something I did not have before I educated myself. If this is anyone’s first trip to this site, don't look at this disease as something that wants to take your child’s life. I look at it now as Da'Monique’s rebirth. She has shown me more strength and will than any adult I have ever known. She made me see the glass as half full instead of half empty. Everything that happens has a reason. I know that she is meant for amazing things. I feel it in my gut. |