| Anthony Anthony's story is written by his mum, Michelle. |
| "Octopus Garden" By The Beatles. |
| ORPHANS OF THE CANCER STORM |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
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| Anthony was born on June 25 1998. I was induced two and half weeks early because he was growing bigger and bigger. When Anthony finally arrived, he was 9 lbs and 13 ounces. He was bruised across his face and his chest and had a broken collar bone. He looked like he had just got out the boxing ring, his left eye was shut, but we had no idea there was anything wrong. Anthony was a very good baby. He ate a lot and slept good . He could sometimes be a little piglet, but he was a very happy baby. He would make the funniest faces and he was never fussy. |
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| From time to time, I would see something float by in Anthony’s retina, but I didn’t know what it was. The first time I had seen this happen, Anthony was sitting in his high chair and I saw this thing float by in his eye. It had freaked me, so I called my husband to look and he thought I was crazy. He said “I don’t see anything. Maybe it’s the reflection of the sun off the window”. That seemed pretty reasonable to me. Then I had seen it again another time when Anthony was in a walker. I just had no idea what I was looking at. We had pictures in which he had red eye reflex and a completely white retina, but we had no idea (this is in hindsight when we looked back at pictures). |
| On the night of November 18th 1999, I was playing with my kids. We had some fake bugs and Anthony started crying every time he saw this one big black ant, I thought it was a little strange. So I had Anthony close his right eye, and he started crying and trying to get away from me. I thought his behavior was a little odd - he was only 17 months old. So I calmed him down and I asked if we could play this little game of blocking one eye to see if we could see the bug I had in my hand. When Anthony closed his left eye, he reacted to the fake bug and when we blocked his right eye, he would cry. I calmed him down and asked if I could block his right eye so he could tell me if he could see the bug, and he said okay. I blocked his right eye and put the big black ant in front of him. When I asked if he could the bug, he said “no.” I finally figured out he couldn’t see out of his left eye. |
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| The next day, November 19th, Anthony’s little brother had a 4 month well child visit. Thankfully, my husband had no work that day. I was not going to say anything about Anthony because he had an appointment in a month and the doctor’s office seemed pretty busy. However, as the doctor was finishing up with Leo, my husband told her that we didn’t think Anthony could see out of his left eye. |
| The doctor said she was not an eye doctor, and whilst she could look into his eye, he would need to see an ophthalmologist. My husband insisted that she look into Anthony’s eye, which she did and then left the room abruptly. My husband and I were thinking what is going on here. When the doctor came back into the room, she was very professional, saying she had just set up appointment for Anthony to see an ophthalmologist. She said they tried to make an appointment for that day but the specialist was in surgery, so we had appointment for 7am on Monday morning. |
| On November 21st, the day that changed our lives forever, we went to see the ophthalmologist. The doctor dilated and checked Anthony’s eyes. He told us that Anthony’s retina had detached - he said this is very painful and asked if Anthony was cranky. No, he is not cranky. We then went down that hall to have an ultrasound of Anthony’s eye. |
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| The ophthalmologist confirmed that Anthony had Retinoblastoma. I had asked “what is that, retinoblastoma?” He responded that it is eye cancer. I asked if he was positive - “yes” he replied. I was shocked. Could this really be happening? Wow!! Now what? |
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| She said we must not miss this appointment, that this appointment was a matter of life and death. WHAT!!! I went right in shock mode. I couldn’t believe what she was saying. She said it had been a long time since medical school, but having no red eye reflex was bad, and please don’t miss this appointment. |
| We left feeling numb. Our three kids had no idea and either did we. We told our extended family that something serious was going on with Anthony, but we didn’t know exactly what, and we needed my mother-in-law to baby sit so we could attend this appointment. |
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| Our doctor told us he thought Anthony needed to have his eye removed as soon as possible, sometime this week. I said “but Thanksgiving is in 3 days“. His reply was that hospitals don’t close. He said he would set up an MRI scan and wanted to talk to some doctors at Massachusetts Eye and Ear Infirmary, telling us we should stay close by the phone as he would be calling. I was in shock but crying loudly in the office - I just couldn’t believe what he was saying. |
| By the time we arrived home fourty-five minutes later, there was a message to say that Mass. Eye and Ear would nr calling us. The call from MEEI came soon after - they were calling us to set up an EUA and possible surgery for enucleation. I was floored. What was this woman saying? I started to cry, the women at the other end of the phone said she understood and that it was okay to be upset. |
| We were to report to MEEI at 9 a.m. on November 22nd , the very next day. Wow, everything was happening to fast. I called my sister-in-law in Mass, to ask if she would come with us. I just wasn’t sure how me and my husband were going to be. She agreed, and I am so glad she came with us - she was great to have there. She is a treasure, so level headed and kind. I knew that we would need her with us. Thank you so much Teri for being there for all of us, and for all you do and did. |
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| When we showed up at MEEI, I could not believe that there were perfect strangers in the waiting room who knew our names, families who were there for EUA’S and had been through the same thing we were going through. We had met the social worker who explained what was going to happen now and afterwards, and showed us fake eyes. My head was spinning at this point. |
| Anthony’s eye was removed this day, and he also had a spinal tap. The oncologist told us that his fluid looked clear and would probably come back fine, which it did. We spent the night in the hospital, with very compassionate nurses. One nurse cried with us - I couldn’t believe that she was actually crying with us. The staff treated Anthony like a king. The next day we went home to our other babies. |
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| After Thanksgiving, we were given good news. Anthony was cancer free and in six to eight weeks he could be fitted for an artificial eye. We did feel very lucky. Anthony was staged at 5 b, the worst stage, but he survived. He was here and we could hug and love him and he would be fine. We knew that we would have follow up but we could handle that. |
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| On March 1st 2000, Anthony received his new eye. He looked so good. In the previous three months, he had undergone an MRI scan and 2 EUA’s. Everything was going well. Anthony was happy and seemed to be adjusting. Nothing seemed to be bothering him. In April, I noticed that Anthony’s new eye seemed to be bulging out of his socket. It looked freaky and my kids asked me what was wrong with Anthony’s eye. I called the ocularist to make an appointment. |
| Thanksgiving was a very quiet day. We went to my mother-in-law’s house for this holiday - our family of 5 and my in-laws, just 7 people. I was glad for that because I was just still in shock. What I remember the most about this day is how quiet it was, it was as though if you spoke, something might happen. it was a very odd day. |
| On May 3rd, when the ocularist removed the eye, there were two lumps in Anthony’s eye socket. Mother’s instincts kick in - I know deep down that its cancer. I start to cry, but the ocularist said we don’t know what it is so don’t get upset. He called upstairs to see if a doctor could see Anthony. Anthony’s regular doctor is not in, so we see another doctor who can’t say one way or the other. |
| I left, telling the ocularist I will call MEEI. I called the hospital and talked to the counsellor, who listened to what I had to say and promised to call me back. She called back with the news that a fellow of our doctor was willing to see us at the ER. We raced to the hospital, 2 hours away, where the fellow informed us that cancer doesn’t usually grow like this but we needed to make appointment with the doctor all the same. |
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| On May 9th, an EUA at MEEI confirmed what I already had known - Anthony had retinoblastoma in his eye orbit. On May 15th, we took Anthony to Massachusetts General Hospital for an MRI, bone marrow aspirates and lymph node biopsy. A central line was also placed on this day. |
| On May 18th, Anthony had a bone scan, spinal tap with chemo injected, and regular chemo, we spent the weekend in the hospital. Anthony’s treatment consisted of 5 cycles of intrathecal chemo, 8 rounds of regular chemo, and 25 rounds of proton beam radiation. His chemotherapy consisted of 6 drugs that were alternated between two groups, group A consisted of Carboplatin, etoposide, vincristine, and group B consisted of vincristine, doxorubicin, ifosmide, and MESNA. He started with group A, and then alternated to group B. During chemo he didn’t eat much, and when he did he would get sick. He did not suffer any side effects other than losing his hair, which we shaved off anyway. |
| After the second round of chemo, Anthony started his radiation - 4 days a week at Harvard Cyclotron Lab. During this time Anthony was very brave, but wasn’t speaking, which probably was a blessing. The doctors and staff of every place we attended told me what a great patient Anthony was. He would march into the hospitals with a smile on his face, and whatever procedure they needed to do, he never cried or complained. He is amazing. He would push his own anesthesia in and call out for his father. |
| Anthony had one platelet transfusion during his whole treatment, though he has had many procedures done to him. Due to problems with his central line, he had it replaced with a port-a-cath on June 29th. |
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| Anthony is now a very healthy guy who loves life. He’s like a very old soul to me. People seem to be drawn to him. He love dolphins, and says he wants to be a dolphin trainer. I think that is a great idea. Anthony still has follow-up appointments. He doesn’t mind to go at all. I even think he likes it. |
| All in all, we had some very bad news when Anthony was diagnosed with orbital retinoblasoma. He only had a 2% chance of living, and these are not the odds that I would have like to have heard, but our team of doctors were willing to fight this awful thing and so we all fought. The end result is that Anthony is here, alive and living his life to the full, one day at a time, surrounded with love. |
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| I would like to say thank you to all that help me personally with this disease. I would like to say thank you for all the support from our family, friends, and the kindness of strangers, and to you Abby for including us on your website. |
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| I just want to conclude by saying that when I first found out I was pregnant with Anthony, I had thought I was expecting a girl. We were going to name her Cecelia, which means “blind”. Instead of a girl, we were blessed with a beautiful baby boy named Anthony, which means “priceless“. |
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