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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

Been a while

It's been a while since my last update.  I've been opening the site then I will just break down in tears cause how do I go on with my life knowing that I can no longer hold my child that I gave birth to.  At the end I have to, I made a choice to become a Mother not just to Connor but to Aidan and Ethan as well.  As hard as it is some days I have to think of them and Bruce, how they feel and what they must be going through.  They say the first of everything is hard well let me tell you even the second of everything is hard, sometimes even harder.  I watch how Aidan has taken on Rugby in Honour of his Brother and how well he is doing in it.  I watch how both our boys going on with their lives but still talk as if Connor is here which we know he is even if we cant see him.  On Connor's birthday we released beautiful red balloons and we stood there on the beach watching them until we could no longer see them.  We could feel him with us as we kept our pain in our heart as the tears just kept on flowing.  How we wish we could have him back...On his birthday both boys had a soccer tournament but while Aidan played in his soccer match Ethan got his finger stuck on the merry go round the least to say we ended up spending a good couple of hours in the ER where he basically lost his whole finger bed and they had to put a plastic nail on to protect it from infection and to let the nail grow back on its own again.  His finger is healing nicely now.  Our family also then took the time to go on a holiday to our new holiday destination where we went to last year to make new memories.  First we stopped at the Grandparents which we enjoyed for a couple of days and then onto Pumula where we spend the rest of our holiday.   We came back but then it hits you again the pain and the emptiness of knowing you have another child and you can see them or even just talk to them and hear their voice again.  Our family has been through a journey that is not normal.  I will not even wish this on anyone.  We as parents should not bury or cremate out kids they should do it to us.  It hurts when we see Connor's friends cause it is like you are waiting for him to arrive with them or you can just imagine how tall he would have been now plus maybe his voice would have been breaking now as well.  Last weekend was also one of the hardest things we did as a family, we went through Connor's belongings, his brothers had mixed emotions as they were talking and sharing things with us when they were opening certain things or touching something or even just looking at it.  We also did Connor's memorial garden here at home which was also not an easy thing to do.  On the good and bright side of things as most people who know me know I love cooking.  I have opened up my own company called CEA Fresh Produce and it is going well so far.  The name of the company is inspired and honoured of our three boys Connor, Ethan and Aidan.  For us as a family the C also means a lot more as it reflects on what Connor fought hard over the years, and when you look at it it will also mean something to you.  A huge thank you to everyone who has supported us over the years.
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Comments

7 Comments

Fran Melgar
By Fran Melgar — last edited
Feeling every bit of your pain. Even 6 years out there are still so many things of Austin's that we have not been able to go through. My favorite is coming upon the young writings of my dear loving and passionate Austin. He asked me to help him write messages to his siblings, and his favorite nurses, so when I come across the originals, or just simple scratches in a notebook where he would tally different things that he was keeping count of, pulls at my heart. The pain is so deep and so profound, and yet the love and joy that we experienced in his short life are equally profound. Little by little I find peace in realizing that the intense pain he suffered is completely gone. I guess this burden has been passed on to us. I pray that every night Connor is holding you in your sleep, and gives you courage to face another day. All my love,
Aaron Horn
By Aaron Horn
Love you guys and think of you all the time!
Sue Koslovsky
By Sue Koslovsky — last edited
It was good to hear from you. I have Connor on my list of Angel children for whom I pray. It sounds like you've had an eventful summer traveling and enjoying Ethan' s and Aidan' s sports. Your new business sounds wonderful. Our little granddaughter, Kate is still fighting Neuroblastoma. She started Kindergarten, but still has residual NB in her bone marrow. She goes in every 6-8 weeks for all the tests including a bone marrow biopsy. Please pray for her. Thank you for your journal update. I enjoy hearing from you. Please keep in touch. Thinking of you with love and continued prayers for the success of your business.
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Siobhan Broekman
By
I think of you very often. I pray for your family and pray that healing in some form comes to your hearts. Connor is not forgotten xxx much love and prayers,
Siobhan
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Nikhita Trikam
By Nikhita Trikam
Yes, it's been awhile but that's okay. Just know that there are people out there who remembers Connor, you and your family. I may not know you personally but I often think of the heartache that you must be experiencing. I cannot imagine what you are feeling, I can only send positive thoughts and well wishes your way. Love always <3
isabel rassoul
By Isabel Rassoul
Hi Tania just to give a hug I wish I could come quickly there, sending you and your family love
Karen Bergh
By
Thank you for the post! I agree on the second even the third :-( We just learn how to live with it. I have two beautiful kids that keeps me going and yes you are a mom of more than one, that helps to get you out of bed! Well done on your new venture, I am sure it will go well. When I look back, I have realised that I am stronger than what I thought I was and we learn to keep going. It definately hits you hard just out of no where, but we carry on. Lots of love Tania and to your family! You are in my thoughts
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