Honor Connor this holiday season with a contribution to CaringBridge. Help us reach our $1 million fundraising goal by Dec. 31. Make your year-end donation now.
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.
Every where you go you see Christmas decorations. The malls are hectic and busy and you think twice before you just go cause you know it is a madhouse to get what you need in the shops. Kids are excited about Christmas knowing that Father Christmas is bringing them something special, but for us and other families out there who have lost a loved one it is going to be a very hard day to get through. The main pic was last year Christmas. Christmas was one of Connor's favourite celebrations and who would have thought it was going to be his last with us here on Earth. We as his parents knew the time was coming but we had to keep it tucked away in the back of our minds hoping and praying that Connor will beat the disease but sadly he didn't. The pain we live with each day is sometimes unbearable but we do. We get up everyday with the choice that we have to move on as hard as it is, Connor would not want us to sit and cry all the time. We know he would want us to go out, meet new people and have fun. When you loose a child or a loved one to such a nasty disease nothing can prepare you for what is going to happen next. People you had in your life moves on it is as when Connor died a lot of friendships died but we also made some new friends. It is like they say some friendships are like the seasons some stay and some moves on. Ethan wanted to know if Father Christmas will be stopping at Heaven to deliver gifts there and I said yes, he is a very busy man this Father Christmas, he was like okay now he is happy cause he was worried that Connor wont get a gift. People say that life goes on yes it does but for a parent who have lost a child life does not just move on, we learn to live with the pain we shed our tears when we want to and sometimes people feel uncomfortable when we do but we cant stop the tears from flowing. When we stop and look around us at the photo's of Connor that is gone it hits you so hard you feel as if you are going to hyperventilate cause the reality hits you that he is gone and not coming back. I wish I had a magic wand to bring him back but then you ask yourself what type of life would he have had, would he ever been able to have beaten cancer or would his life continued to be in and out of hospital. We love and miss him more than words can say and there is nothing we say or do that will take away our pain. So please if you see us, please just stop saying that he is in a better place cause it hurts. So today when you go on with whatever it is that you are doing, be thankful and grateful for what you have, enjoy your children and your loved ones, don't wait for something to happen before you say or do something about it. If you have a friend you feel you need to talk to about something just do it, if there is someone special you would like to have in your life but to afraid to say or ask just go for it. Life is just to short to worry about the small things. Thank you for each and everyone who have been there in our life before, during and after cancer.