Connor’s 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.

Latest Journal Update


It's the first day of Spring here in South Africa and I know that it has been a long time since I wrote something.  But you must also understand or at least try that when one of your children dies a part of you dies with them.  You need to find yourself again, as a Mom,, a Wife, a Woman and as a Person.  It's not always easy seeing your friends whose children were your child's friends.  You see them you try very hard not to cry as you know your child should be there with them going to parties and enjoying his life.  I sit and wonder what Connor would have been as a teenager cause he would have been 14 years old.  Would he have had a girlfriend?  How tall would he be?  Even if I try and think of something else so that the pain of not having my child with us in person will go away it doesn't.  The reality is my child is dead and no matter what I do life will never be the same.  We are no longer the people we use to be.  We have changed.  I look at the boys and I see how they have changed.  Do they talk about Connor?, yes they do.  Do they cry? yes they do.  Ethan is only understanding now in a way that Connor is not coming back to us and that he is in Heaven so he says that the main thing is that Connor has no pain.  We talk about all the good memories but sometimes something will trigger something and it will bring a bad memory and you will find us crying.  For us crying is part of healing, for others they feel uncomfortable.  The boys are doing very well.  Aidan has moved up in soccer and play in the Super League at club., only 10 and playing with the U12A.  Ethan well what more can I say about our little Dennis the Menace he also plays for an older team U8A.  Our social life is based around our kids and if we want to do something we have to book it way in advance but that is how things should be your children and family should come first.  My Business also just celebrated it's first anniversary and doing very well, huge thank you to all the support I am getting from my family, friends, clients and playschools in and out of the area.  Bruce is also doing well and very busy at work.  I will try not to stay away for so long but cant make any promises. 
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Becky Pulley
By Becky Pulley
thanks for your post. Connor remains on my bulletin board and your family in my prayers - Becky in NC
Sue Koslovsky
By Sue Koslovsky
Thank you for your much missed post! Thinking of you with love and hugs from Kate's grandparents in Ohio.
ali m
By ali m
Sending love from NYC and the RMH. xo
isabel rassoul
By Isabel Rassoul
Sending you love
kathy anderson
Hey Tania. Was thinking about you just the other day and wondering how you guys are. We had a bit of a scare with our 14 year old (health wise) and that triggered thoughts of u guys. Many years ago a mom of 2 boys (whose eldest also passed away) told me you can never replace a child, but by having other children gives you a reason to get up everyday. A lesson I took to heart. I'm not sure if the pain ever gets easier, but enjoying life through your kids now must be insisted on. Non of what you guys went through should be in vain and knowing that we can't take our kids for granted is a life lesson very glad your business is doing well. Keep in touch. Kathy
1 person hearted this
fay howe
By fay howe
Prayers for you and your family. Praise GOD I have not had to go though the pain and suffering, so I am only able to imagine your pain.
1 person hearted this
fay howe
Prayers go up for you and your family. Praise GOD I have not had to go though the pain that you have, so I can only imagine your pain.
1 person hearted this
Lisa Bonnet
By Lisa Bonnet
nothing is the same as before. that you continue to get out of bed out each day is a miracle in itself. i am lucky to have you in my life. any post from you is welcome, even when you are sad.
1 person hearted this
Nikhita Trikam
By Nikhita Trikam
Dear Tania,

Big hugs to you always... you have no need to worry about anyone, updates etc as you are the one going through the hard times and take it in your stride <3
2 people hearted this
Karen Bergh
By Karen Bergh
Hallo Tania,

Thank you for the update, it is a long journey and life changes forever and you are very right you as a person are never the same again. Daniel died 4 years ago and his brother is starting to ask question now more than ever. I realised in trying to answer him how little we understand (don't think we are suppose to and never will) when I try to give him answers. Now we are all keeping a diary and we tell him everything. Each having their own one! Thinking of you and your family and wishing you blessings all the way!
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