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My Story

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.

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tania Gerber posted a new journal entry, "1 Year".

I know it has been a very long time since I last wrote something but it hasn't been easy for me to visit this site. Yesterday was exactly a year since Connor passed away. ... Read more

Ariel, Daisy & Lizbeth Rodríguez signed Connor's Guestbook.

Time passes quite fast, but grief seems to kind of stall. That's what makes human creatures stand out of other species. Our love for our dear ones do not vanish with the ... Read more

tania Gerber added a new photo.

Rhonda Toombs signed Connor's Guestbook.

Praying that the comfort and peace that only comes from God will sustain your family until you meet again! Read more

Barbara Zobian CandlelightersNYC.org signed Connor's Guestbook.

Tania, I am sending love and hugs...I will love and honor Connor forever and always, he is always with me... Yours forever   Barbara Read more

Sue Koslovsky signed Connor's Guestbook.

Of  course you speak of him. He is your son and will always be an integral part of your lives! I feel and believe that the doves flying overhead was a sign from Connor. ... Read more

Isabel Rassoul signed Connor's Guestbook.

Dear Tânia and family like always there is no words and I can just wish u all the best for this year. <3 Read more

Adri Muller signed Connor's Guestbook.

Dearest Tania, Bruce, Aiden & Ethan there are not enough 'trooswoorde' for you but I constantly pray for God's Grace to fill you with blessings for 2014 and the knowledge ... Read more

tania Gerber posted a new journal entry, "New Year 2014".

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 ... Read more

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