Connor John Gerber was diagnosed with Stage IV Neuroblastoma in July 2005. For almost 8 years Connor fought this nasty disease. As we all know Connor he lived his life to the fullest, Connor earned his Angel Wings at home surrounded by his Family on the 19th of April 2013. Forever 11.
Below is the rest of Connor's story.
My name is Connor Gerber, I am a 11 year old boy from Cape Town, South Africa. I was diagnosed with stage IV Neuroblastoma in July 2005, a week after my 4th birthday. I have been treated at home in South Africa, and at Sloan-Kettering in New York, for the past 7 years, after fighting a very difficult relapse 2 years ago I have again relapsed, progressed and have some new disease, enjoying my life to the fullest! .
After numerous visits to GP's and paediatricians due to persistant fevers and aches, which were always attributed to viral infections and growing pains, I was finally correctly diagnosed with stage IV Neuroblastoma. By this stage the primary tumour in my chest had metastasised to my bones and bone-marrow.
I was referred to the Red Cross Childrens' Hospital in Cape Town where, after a full work-up, I started the 7-round COJEC induction chemotherapy protocol comprising 4 cycles of Vincristine, Cisplatin, Etoposide & Cyclophosphamide and 3 cycles of Vincristine, Carboplatin, Etoposide & Cyclophosphamide. This protocol reduced some of the disease burden in my bones and bone-marrow, but did not shrink the primary tumour. I was accordingly deemed incurable and placed on palliative chemo of Doxorubicin & oral Cyclophosphamide - of which I had 6 cycles.
The recommendation to give-up my fight and allow the disease to slowly run it's course was something my parents and I were not willing to accept as I was feeling really strong and determined to defeat this beast. There were unfortunately no options available in South Africa to help me fight the disease and so, after extensive research, my parents decided the best place to go was Memorial Sloan-Kettering Cancer Centre in New York. The team there reviewed my medical records and advised that they would be willing to help me continue my battle. Unfortunately this treatment is extremly expensive and our health insurance is not prepared to assist in any way. But, with the help of amazing family and friends, and the incredible support of my community, we were able to raise the funds required to pay the initial deposit and start treatment at MSK.
In May 2006 my mom, dad, brother Aidan and I packed-up our home and lives in South Africa and travelled to New York, where we lived for 16 months at the Ronald McDonald House. During my time at MSK I have had 2 rounds of high-dose chemo (Cyclophosphamide, Topotecan & Vincristine), the successful complete resection of my primary tumour, 1 more round of high-dose chemo (Cyclophosphamide, Irinotecan & Vincristine), 8 rounds of 3F8 Immunotherapy (6 with beta glucan & 2 times 10 dose-escalated with GMCSF), 10 rounds of radiotherapy to the primary tumour site in my chest and 15 rounds of radiotherapy to my skull mets.
The net result of this treatment is that my primary tumour has been "gone" since July 2006, my bone-marrow clear since September 2006, and the disease in my bones stable to moderately improved.
I am currently on the second-line chemo protocol of Irinotecan and Temodor and have had 12 cycles to date. My body is tolerating this treatment very well, which is a good thing as I have been HAMA positive since July 2007 and can't receive any more antibodies because of this.
The last 9 rounds of the chemo have been administered at home in South Africa, and I am really happy to be back with my friends and family - although I do miss the folks at Ronald McDonald and MSK.
So Christmas came and went by. The morning itself was beyond quiet, we were expecting the kids to come run into our room and show us what Father Christmas bought for them in their stockings but there was none of that. They came in and said Merry Christmas but we all could feel the sad and loss of Connor's presence. Every year the boys normally will get together in Connor's room and go through their stockings to show each other what they got but this time it was different. The rest of the morning I struggled to keep a smile all I wanted to do was cry which is what I did, by lunch time I managed to dry some of the tears. As we all sat outside and the kids were in the pool 5 white doves flew over our house which is something you don't see often. Grandpa, Grandma, Mike and Jo arrived and we all sat down to open up all the presents, that went quickly and then we all set off to go for our Christmas lunch. The lunch was good but you find yourself looking into the crowd of people hoping to see Connor's face but then it hit you again that he is not there. New Years came another first that Connor loved and every year we celebrate it with good friends but this year we couldn't as it was something we were not ready for, so we had a quiet New Year's at home, came night time we saw the most beautiful fireworks display as well as Chinese lanterns were coming over our house. Ethan fell asleep quickly but Aidan was keeping us entertained with his dance moves. So we say goodbye to 2013, a year that was not a good one to us, a year we said farewell to our son at the age of 11. We welcome 2014 hoping and wishing for a better one. As Aidan will be heading over to the campus where Connor was to start grade 4 and Ethan will be starting grade R. I wish both our boys a good year, a happy year, more smiling and hopefully less crying. Connor will live on in our hearts forever, his Spirit is with us all the time we can feel his presence. The memories we have we will always treasure and hell yes we will speak of him and if it makes people uncomfortable they must just walk away. We love and miss you Connor.