15th June 2006
Connor my son you know you have cancer. There isn’t an explanation as why you became sick. All I know is God has a plan for each of us and for each there is a purpose. Some of us know what our purposes in life is and some will never find it. Then there are those like you who accomplish it without even realizing it. Your journey of your illness are helping doctors understand this disease a little more. It is through your illness that you have opened the eyes to those around you to how precious life really is. Something we all too often take for granted. It is through your illness that some of those around you have realized that life is too short to be afraid of our feelings. Your cancer has been beaten back by power of love. It is the most powerful of emotions, one not to be afraid of, but to embraced. To be loved by someone unconditionally and completely is to reach into your soul and feel warmth. Ii is through your illness that you have shown that there is no guarantee for future only dreams for it. Whether the future be another day or another 75 years, we should all dream big and live fully everyday. It is through your illness that you have seen the strong cry, only to find more strength. It is through your illness that some of us who haven’t talked to God in a while have once again began to pray. It is through your illness that you have joined the hands of those familiar to those of strangers, to form one long chain. You have already accomplished so much more in such a short amount of time and each day you continue to touch the hearts of many.
We are still in hospital. Connor had a fever and then start sweating like crazy as the fever broke they were first worried but then relaxed for he was not even complaining, had another blood transfusion so they think that could also have been the problem. White cells are still low they said we must not give up hope for it will come up just have to be patient. Still on antibiotics reckon they bacteria that he had in his line was one that they do not see often and it could even have been some bacteria from South Africa only time will tell. Feeling a lot better today for he is been hitting me with some serious questions regarding his health. Wanting to know why did he get cancer? What did he do wrong? And is he going to die? What do you do as a mother can’t tell a almost 5 year old the truth so all I said you are going to be fine and you are going to grow into a very handsome young man and like you are now famous will probably be a very famous doctor one day he turned to me and say wrong mommy I am going to be a very famous Fire Fighter! He is looking forward to this afternoon they are going to be playing Bingo and have some very nice prizes. Last night they came around to our rooms and the kids could make their own pizza, even the clowns came to visit so he had lots of fun. I am so happy with how they treat the children here there is so much entertainment here for them everyday so it take their minds of what they are going through. Doctors have just arrived busy doing their rounds so speak later.
13th June 2006
INTO MY HEART
– Garnett Ann Schultz
You tiptoed right into my heart;
I knew I loved you from the start-
That tiny hand, that baby face
A world of filigree and lace
Your smile, your voice, so sweet and dear,
You filled my world with endless cheer
You own my heart dear little one,
You fill my world with endless fun
Togetherness, each hug, each kiss-
‘Tis all of these I would’nt miss
I love the time I tuck you in,
The mornings when our day begin
Dear little boy, you’ll always be
The whole wide world and all to me
I’m thankful for each hour we spend
And all the happiness you lend
It matters not when we’re apart
You’ll always live within my heart.
God, please bless our family and all the families fighting this horrible disease, please give our children the miracles they need to so that they can show the world the power of your love.
Yes we are still in hospital no fevers almost had one but got caught in time. I noticed his left eye looked a bit red but only when he look to the side called in the nurse to find out what happened took one look and said platelets are low, a blood vessel burst in the eye (nothing serious) will go back so Connor received another platelet transfusion today for it is still low but it is caused by the GCSF injection he gets and he has to get it for the injection, on the other hand helps to boost his white cell count. Dr Modak said that his white cell count should start to come up from today. They are also looking at stem cell harvest in 10 days time and after that when his count is high enough the next chemo. I hope that he will be spending his birthday out of hospital but we never know just take one day at a time. This afternoon the nurse came in to clean his line although he insisted mommy must do it so I said Connor she is your nurse and let her do it today I am only your nurse when we are at rmdh he looked at me and said no you are not you are Superwomen and you can clean my line whenever I say so we all just laughed at him, but I still insisted the nurse to do it for she already had her gloves on and was peeling the Band-Aid off, believe me when she finished with him he refused to talk to her she had to bribe him but it worked they are mates again. Connor and I went to the playroom where he got to play BINGO and he won, 1st price a Super-Strength Spiderman and 2nd price he won himself a Ninja Turtle, he also got to choose for his little brother Aidan something which he is so excited about to give him, after all the fun we went back to our room. Currently he is lying in bed playing with the new toys he won and eating ice cream (21:20pm here) not complaining for it is better than eating nothing. Still very strong and smiling. Flirting with the nurses big time, had a volunteer who played games with him (Giselle Bunchen look a like) dad (Bruce) now insist he should come and visit more but I don’t think even he would be able to get Connor away from her, the other nurse that he likes is a look a like Sandra Bullock. Men can’t take them anywhere. Connor just wants to go home (rmdh) he finally understands a bit more that we can only go back to our home in South Africa when he has beaten his disease so he told me “Mommy we don’t have a lot of fighting to do we are winning allready”. Children they are so innocent. Well story time he is waiting patiently so goodnight everyone.
11th June 2006
The Littlest Soldiers
by Cheryl Jagannathan
The medals on our chests
are broviacs for meds
Helmets won’t stay on
cause no hair is on our heads
Our weapons of destruction
we take every day
We fight the battle within us
while we struggle on to play
We fight with honor and courage
no Marine could do as well
We are only children
living in this hell
So bring on the medals
the purple hearts of wars
The gold cross, the silver star
to place upon our scars
For we are the children of cancer
no one has faught so hard
But everyday we struggle on
our LIFE is our REWARD!
What a hectic time so far as you all know we hardly arrived and the test all started the next day, following by all the biopsies and scans. Well here we are with some horrible fevers that just won’t go away. Bruce rushed Connor in to hospital yesterday at 03:45am with a high fever and when i spoke to him at about 09:00am everything was all right. Aidan and I took a slow stroll to the hospital hoping that by the time we get there they would have had Connor all set up in his room, when I got there the nurse told me that she does not think it is a good idea for me to see Connor right know for there have been some complication I looked at her as if what are you talking about I just spoke to my husband a couple of minutes ago and he still said everything was fine. I went straight to Connor’s room and saw that the curtain was closed and a room full of people I opened it and there he was lying in his bed covered with ice packs and lines from everywhere. They apparently tried to get another line into him but his veins were just collapsing so they managed to find one in his foot, he just look so pale my heart just went out to him I turned around and walked out I just could not stop myself from crying nurse came over and told me everything will be all right just hang in there for this is normal we are on day 11 after chemo which is the worse day. I looked at her and said what do you mean this is normal this is not normal seeing your child hook up like this shaking like he has no control, so I went back in there and next minute we rushed him out into the procedure room. Connor just kept on asking what is going to happen to me mommy am I dying I said no Connor the doctors are going to make you better don’t worry about it. Procedure room he was given a mask to blow in so they could put him to sleep for they had to take out his line they were not sure what was causing the fevers sometimes it can be the bacteria in your body that can causes it but also because he is neuropenic (meaning no white cells) he is in danger so had to take out the line immediately and they put in a temporary line into his left side, plus he had a line in his right food where he was receiving platelet transfusion while this was all happening, when they wheeled him out he was still out but recovered quickly, the fever was coming and going, his blood pressure stayed the same thank God for that. When he recovered fully believe it or not he was asking for cream soda they laughed at him and he just gave us all a smile, unfortunately they don’t have cream soda here but we managed to find him a fanta orange. He is currently on antibiotics for the next couple of days so we will be in here a little bit longer but rather that than a child with high fevers. He also had a blood transfusion so he looks a little pink right now. Busy playing junior monopoly with the volunteer cheating like crazy and having fun. They had a candy cart that came around where the kids gets to choose whatever they want on it well the way Connor chose he can open his own candy store in the room. His poor brother picked up a cold so he is not aloud to come near Connor at all so dad is getting a lot of exercise at the moment he is doing a lot of walking and entertaining the little rascal. Must go for he wants to order lunch knowing him it is probably going to be pizza or a burger without the roll, he has a special menu that he orders from. So until next time lets just all pray together for no more high fevers and that he will recover soon, like we all know he is a brave soldier.
06th June 2006
As you all know Connor had 4 days of intense chemo which started last Tuesday and ended on Friday he has been handling it pretty well. We came home (rmdh) with a back pack everyday which contained fluids he had to take so we did not get enough rest for you are pretty nervous knowing that your child is attached to this back pack and there is no nurses or doctors to help you if the alarm on it decides to go off therefore we had to have like special training to be shown what to do if it decided to do its own thing lucky for us it went pretty well and no complications. Connor complained about his tummy being sore but they said it is normal for he had a lot of chemo and antibiotics because for some reason he was having fevers but at the end they said it was because of all the anesthetics and pain medication that caused it shoo what a relief. Had a cold weekend but not complaining for it has been very hot here like Durban weather thank goodness we have air-conditioned rooms. We went and saw the doctors this morning and Connor’s blood test came back not good his white cell count is very low so they had to put another line in it looks like a butterfly at the top of his right arm he did not even complained he was to busy watching Sponge bob Square Pants. We have to give him now for the next week an injection (G-CSF it boost the white cells) everyday into it yes you heard right Bruce and I have to do it, looks pretty easy. It is amazing the amount of procedures you get use to but it is still not nice to see what your child has to go through to get better. Connor has been asking when we can go home (South Africa) we told him when this is all over luckily we did not have to go into it any further. The doctors reckon that he will probably be admitted in the next 24 hours with a fever which is absolutely normal nothing to worry about. All I want to do is cry for him but I can’t Bruce told me not to worry everything will be fine and I know it will but I just hate it watching him going through all of this if I could I will take his pain and what he is going through in a split second and not even thinking twice about it. Must go have orders from the young warrior as he is lying watching Power Rangers.
30th May 2006
An oncology ward is a battlefield, the patients they are the ones doing the tour of duty. The doctors breeze in an out like conquering heroes but they need to read your child’s chart to remember where they’ve left off from the previous visit. It is the nurses who are the seasoned sergeants, the ones who are there when your son is in pain. The nurses know the name of your son’s stuffed toy. The dotors may be mapping out the war games, but it is the nurses who make the conflict bearable. You get to know them as they know you, because they take the place of friends you once had in a previous life; the one before diagnosis. I can’t even really remember what it was like to hear a story about a mother with breast cancer or a baby born with abnormalities or any other medical burden, and to feel myself crack down the middle half sympathetic half grateful that my own family was safe. We have become that story, for everyone else. The carnival that we had was so nice, it was completely different to what we South Africans are use to. The kids were having a ball of a time. It is so nice to see how Connor and Aidan have settled in for they have made so many new friends. There is a lot of children here who also has there siblings with them. We had to get up early for the hospital poor Connor was not aloud to eat anything since last night 10pm so you can just imagine how he is asking for food right now. He already had a line in his arm (drip) so they had to quickly prep him up but he was not complaining for every room that he got to go in had a television and cartoon network. Then i got dressed in a white outfit, booties, mask lover shower cap look a like so that i could go with him into theatre. He laughed at me for i looked like someone who is afraid of picking up any bugs as Connor was saying. He even drew on my outfit a smiley face and i was labeled a Special Mommy Doctor. Got into theatre met the whole surgical team until Connor was lights out. Surgery lasted about 3 hours then i went to see him in recovery. When i walked in i just went and sat down next to him he was still sleeping i just could not stop myself from crying the nurse came up to me and gave me a whole box of tissues i still try and hide my face for i felt embarrassed to cry like this in front of a stranger she just looked at me and said mommy let it out for you have been keeping this in for a long time i just looked at her and said how can you tell she said she is a mother as well and she knows what i am going through for i am not made out of rock let your tears flow for he will be out for a long time. I said to her that it is not that the question is when is this all going to end just seeing him lying there with pipes coming out all over it is not nice to see. He had bone marrow biopsies done 2 in the front (on his hip bones) 2 on his lower back, then he had a drain in his side towards his back, above that another section where they made the incision to the biopsy of his tumour (which is still active), then he also had a line put in that goes straight into his chest so from now on when he gets his chemo all you see is these 2 lines hanging out of his chest and they will just hook him up to his medicine through that no more needle work. His blood pressure dropped a couple of times but that is caused by the anesthetic and pain medication. Connor was only released on Monday and poor Bruce and Aidan could not really come near him for they have been ill, but also on the road to recovery. Poor Connor – every time he woke up not just crying of pain but also battling to breathe for it was very painful so i had to sit and do breathing exercises with him to make sure the lungs are working probably, all he kept on asking me was if he was going to die and if that was the reason why he is battling with his breathing so i said no you just had a lot of procedures done to you but he accepted that and dozed of again. Connor is due to have chemo tomorrow for the next 4 days. Had to go and get medicine that he will need in the next couple of days to prevent infections. Have to learn a lot of new things for his line that goes into his chest needs to be cleaned 3 times a week we have to wear special mask and gloves and you can’t get the gloves mixed up even, then the little plugs needs to be changed once a week plus we need to give him injections to make sure his blood does not clot. This is just the begging but before we know it we will be finish and on our way to recovery. Keep on praying for Connor and all the other children that needs it for there is a lot of them, and thank you all once again for your support. Must go now will let you know how Connor is doing besides missing his friends like crazy.
25th May 2006 – First journal entry from the Big Apple!
As the family we would like to say thank you all so much for your support and prayers over these past 10 months for we are leaving for New York in 2 days time. Thank you to Bernie and the rest of the crue for all their hard work over these past few months it means a lot to us. Connor is so excited for he knows where he is going and that he will be flying in a big aeroplane we are all just worried how the kids are going to cope but i know that everything will be fine, until next time Bon Voyage to everyone out there who have been supporting us and please don’t stop for we will never know what Bernie and the rest of the team will have up their sleeves while we are away. Fundraising will continue for we won’t know what other cost can occur while we are over there and what treatment he will be getting. So Goodbye, Totsiens, Salane Kahle, Alwiederzein.
We have arrived finely for it felt as if we are never going to get there. The kids were very good Aidan did not even scream on the flight from Cape Town to Johannesburg and he slept basically through to New York. Bruce and I had some cat naps but it is actually impossible to sleep on such a long flight but we are here and i am still in shock. We are still very tired and trying to settle in but it is difficult for we got here on Tuesday and Wednesday we saw the doctors. The people that we have met so far are very friendly they like our accents. We have had a busy schedule so far poor Connor had on the 24th of May blood test and urine test (24 hours not aloud to miss 1 wee), 25th of May he had ct scan, echo gram (test of the heart), seeing the doctor for pre-surgery. Yes you heard me Connor will be operated on tomorrow the 26th of May, he will be having a bone marrow biopsy on 4 different sites (2 on the back and 2 on the front), they will be putting in a line and not a port for it is apparently better, and also a biopsy of his actual tumour they reckon he will be in hospital for a minimum of 2 nights so we have explained to him what is happening and he is absolutely fine with it. They will start chemo on Tuesday and they reckon that guaranteed he will probably be in hospital the following week with fevers for it is absolutely normal so everyone out there please pray for Connor and the other children like him fighting this horrible disease or should i saw the bloody war and let them just beat it now. We also have finally met Dillan and Melissa as well as Jack and Yvonne Brown, please visit Dillan’s website so you can see the photo Melissa took of the boys last night. Connor has settled in very nicely and i am so happy that he has made some friends. We had a carnival tonight and they went way out when it came to entertaining the kids. They all had so much fun and it was so nice to see all of them running around like children should and nobody minds the noise you can see they are all use to it. Must go now and try and get Connor to go to bed for he has discovered Scooby Doo Snacks which he wants to keep taking back to his friends does not understand that we are going to be here for some time. He misses his friends like crazy and he has ask a couple of times when can we go home so we had to do more explaining so he said we won’t be here for long before we know we are flying home. Well must go now for we have to be at the hospital very early will give you update later.
02nd May 2006
“Sons are the anchors of a mother’s life.”
SOPHOCLES (496-406B.C.), FROM “PHAEDRA”
I have some WONDERFUL NEWS; we are leaving South Africa on the 22nd of May to go to New York!!!!!! So New York we are on our way. In a way we are all excited for now we know that the date is set and the days are being counted but then we are also sad for we are leaving family and friends behind for they must not worry we will return with a HAPPY and CANCER FREE CONNOR!!! Connor can’t wait for his holiday that we are going on but he has started asking all kinds of questions regarding all his pets so we had to explain to him that they won’t be staying at our house for they will be staying with friends who will be looking after them so he has accepted that for now. We are also giving Connor a surprise birthday and farewell party next week so I can just imagine his face when he sees what we have been planning for him. Bruce and I would like to also take the opportunity to thank each and everyone one out there who has supported us and who is still supporting us and to say please don’t stop supporting us for the fundraising will keep on going for we all know that when you go to a country as a foreigner you will always have hidden cost that will occur and we also don’t know how long we will be there it all depends on how Connor takes to their medicines but deep down in my heart I know that my BIG, BRAVE, BOY will be fine, for tomorrow he will also receive his last chemo in South Africa. Don’t worry even while we are in New York Connor’s site will still be going so you will be hearing and seeing from us until we come back. We are scheduled to see Dr Modak on the morning of 24th of May, nervous but also knowing that Connor will be in very good hands especially knowing that your child will be seen by a doctor whop specialises in his cancer so you automatically feel a bit relieved. To the Team at Red Cross Memorial Hospital I would like to Thank each and everyone of you for your dedication and support you have shown for Connor we know that some of you might not feel the same we do but at then end it is not about you or us but to save our son life and to believe that there is medicine out there that can help children like Connor with Neuroblastoma and to hope that someday in the near future they will be able to bring these medicines to South Africa. To Dr Mark Hendricks you are the best when it comes to needles work and we are going to miss you for Connor always looks forward seeing you when he goes in, to Helen your smile and patience when it comes to Connor’s needlework (passing him on to Mark) knowing that you also did not like to have seen what he had to go through every time it came to chemo time and we know that Connor also has left a special place in your heart like you have left is his, To Dr Dessai thank you so much for ever thing you have done for Connor, Thank you for your support and prayers, and to Maria, Veronica, sister Brown and the rest of the staff Thank You for all your support and smiles and for keeping us going during the days while Connor had his chemo, until then till next time for it is time to tuck Spiderman in.
Sorry Connor could not receive his chemo today for his white cells were a bit low and the doctors rather play it safe for if they do give him chemo he stands a big chance of developing a fever and being in hospital so chemo has been delayed for next week Wednesday., otherwise he is still running around and driving me up the wall for he could not even go to school these 3 days, we are trying and protect him as much as we can against all the “goggas” (germs) out there, see he is at high risk right now for any infections.
We had a “spin for Connor” over the weekend and it all went pretty well. We were amazed how many people just came to support the cyclist, even Bruce and Connor went on the bikes for a pose, Connor could not understand why these bicycles can’t go anywhere except just cycling on the same place he even said that these people must be getting bored just looking at the same things and not be able to move. Thank you to Anthony who hosted and participated in the spin a thon.
Connor’s chemo went very well today and I was so relived when I saw his results and how well he is doing. He can’t wait to go to New York and as you all know we have “min dae” left so we are all very exciting and nervous at the same time. Connor also can’t understand why Tristan his friend can’t come with the more you explain the more questions he ask so I try my best to explain as much as possible. Connor is doing extremely well and sometimes I think he even amazes other people at the energy he has and always on the go they just can’t believe it when they meet him and they actually do ask me sometimes if he really has cancer for he looks so healthy and always smiling. You should be able to see some photo’s quite soon for I know that they are busy working on Connor’s gallery., so please just hang in there.
We as the family would also like to thank everyone again for all their support, faith and prayers that has gotten us through a very difficult time and that we are going to come back to South Africa and I know that everyone for the rest of their lives will remember Connor for he has touched so many people out there’s hearts. People is going to remember him not only for what he went through as a 4 year old but also what he has become and achieved in his life., and we as his parents are proud to say that we and our community and friends were there to see him through the bad times and the good times and we are all looking forward to his 21st. Connor my boy I love you more that anything else is this big world, yes even more than the smarties we love to eat together. So for now I am off to go and take on the Play station Champ with his latest game he was given.
19th April 2006
“There is an enduring tenderness in the love of a mother to a son
that transcends all other affections of the heart. It is neither to be
chilled by selfishness, nor daunted by danger, nor weakened by worthlessness, nor stifled by ingratitude. She will sacrifice every comfort to his convenience; she will surrender every pleasure to his enjoyment: she will glory in his fame
and exalt in his prosperity; and if adversity overtake him, hw will be the dearer to her by misfortune; and if disgrace settle upon his name, she will still love and cherish him; and if all the world beside cast him off, she will be all the world to him.”
Happy Easter to Everyone out there. If you have to see the amount of Easter eggs Connor has he can actually open up his own shop. Our chemo went very well and Connor is still running around and smiling like a little boy should be doing his age. We also had some test done for the doctor in New York and everything went well. His hearing is going strong and so is his heart for those of you who did not know but sometimes the chemo affects their hearts and hearing, and for now Connor is doing very well. I still truly believe it has a lot to do with all the positive support and prayers we have been receiving from everyone out there. Connor’s Oupa came to visit him now for Easter and went back to Durban so he was sad for he does not understand why his Oupa and Grand Parents are staying so far away. I have tried to explain but you cannot argue with a 4 year old for they know better than us., so he has decided that he is going to adopt grandparents closer to him so that he can go and visit them just like his friends does. He apparently already has 2 grannies Mary (Tristan’s granny) and Gloria (Caitlin’s granny). We are doing some more test on Thursday for the doctor’s in New York for they just want everything to be ready for when we arrive so please keep thumbs up that everything will be okay I know it will. I will let you all know how it went. Must go now for it is time to pick him up at school.
5th April 2006
“It’s such a powerful connection;
it takes me by surprise.
I feel like there’s a dotted line
Connecting me to my son.”
I know it’s been a while everybody must be wondering what happened to us. We went to Durban for a couple of days for it was my father in law’s 70th birthday., it was so nice to see the whole family again for we don’t know went we will be seeing all of them again. Connor was over excited for he got to be in a aeroplane again and above the clouds of all places which he finds was quite amazing for how does the plan know how to fly so high without crashing into the clouds so you can just imagine the type of answers we had to come up with. He also got to see and touch dolphins in Durban at the Aquarium and wow it was so nice to see him smiling and happy like a little boy should be. Also I hope all of you have been reading Harrison’s site which it linked to Connor’s CONGRATULATIONS HARRISON!!!!!!! for there is no more evidence of the Neuroblastoma disease.
“Romance fails us and so do friendships, but the relationship of
Mother and Child remains indelible
And indestructible – the strongest bond
Upon this earth.”
I also went and saw Connor’s teacher Karin at school regarding Connor’s school report and I was so happy to hear that he is doing very well except that he does not sometimes listens to her which I think is actually normal for a boy they do tend to have selective hearing just like their fathers from time to time. He is just very unhappy at the moment that it is school holiday for he can’t understand why they need it he reckons they should still be able to go to school and have a holiday when they feel like it. Connor is doing so well at the moment and Yehudit his healer that I take him to is also so positive that Connor is going to be fine, and I know that he is going to be 100 %. This is such a horrible road we are travelling right now but I know that we are going to get through this. I was day dreaming the other day and I could still remember the day when I phoned Bruce and told him that he was going to be a daddy. It was the happiest day in our lives apart from getting married. I can even remember that first butterfly feeling I had and I started to jump up and down on the bed from excitement as I was shouting at the top of my voice that I can feel the baby move, Bruce was just telling me to calm down before I fall of the bed. Then I was there when he sat up, crawled, cut his first tooth, first step and spoke. It feels as if it was just the other day but now I look at him at his tender age of 4 he has matured and experienced so much more than any child his age., but I am honoured to be his Mother and to be there for him for I know there is a lot of mommies out there who can’t be there for their precious little ones. I must still go and pack his bag for tomorrow for it is chemo time but, don’t worry as usual Connor is very brave and he will still be smiling once we are out of there. So I have to go and I will let you know how it all went for I still have to prepare him as well.
15th March 2006
This song is dedicated to Connor from me:
Come stop your crying, it will be all right
Just take my hand, hold it tight
I will protect you from all around you
I will be here don’t you cry
For one so small,you seem so strong
My arms will hold you keep you safe and warm
This bond between us can’t be broken
I will be here don’t you cry
cuz you’ll be in my heart
Yes, you’ll be in my heart
From this day on
Now and forever more
You’ll be in my heart
No matter what they say
You’ll be here in my heart
Why can’t they understand the way we feel
They just don’t trust what they can’t explain
I know we’re different but deep inside us
We’re not that different at all
cuz you’ll be in my heart
Yes, you’ll be in my heart
From this day on
Now and forever more
Don’t listen to them, cause what do they know
We need each other, to have and to hold
They’ll see in time, I know
When destiny calls you, you must be strong
I may not be with you, but you gotta hold on
They’ll see in time, I know
We’ll show them together cuz…
You’ll be in my heart
I believe, you’ll be in my heart
I’ll be there from this day on
Now and forever more
You’ll be in my heart
no matter what they say
you’ll be here in my heart always
I’ll be with you
I’ll be there for you always
Always and always
Just look over your shoulder
Just look over your shoulder
Just look over your shoulder
I’ll be there always
Hello everyone for those of you who have been wondering how we’ve been, we have been busy!, busy!, busy!. For those of you who know fundraising will know what I am talking about. Connor had chemo last week and he also picked up a viral infection so therefore he was on antibiotics as well. He had to finish the course of antibiotics, which he did. Otherwise he is doing very well and running around with far to much energy. If you see him you just won’t believe that this little man is fighting such a horrible disease for he is just so strong. To wake up every morning and hearing him laughing with his brother just makes me so happy inside and looking even more forward towards the day. Connor my angel you mean the world to me and your fighting spirit just prove to other people out there not to give up there fight with cancer for yes it is a horrible and sometimes a lonely road but we are all going to make it. Thank you to everyone out there who have been so supportive through this difficult time. If you stay in Cape Town please come and support Connor’s Big Walk and get to meet him on the 25th of March starting point next to Dolphin Beach Hotel down to Doodles and back to the start. Time starting is 9am, and entry is R10 per walker. There will be FREE give-aways at the end of the walk and LOADS, of lucky draw prizes, so hope to see you there.
1st March 2006
Thank you to everyone who attended our golf day it was a huge success., Connor though got a bit tired for he was running up and down to have his photo taken with everyone but at the end he had a fun day for he also got to ride on the golf carts a lot. Thank you to the anonymous donor for his Play station 2 for we know he is going to have hours long of fun for he has been wanting one for a long time.
Once upon a time there was a child ready to be born. So one day he asked God,
“They tell me you are sending me to Earth tomorrow, but how am I going to live there being so small and helpless?”
“Among the many angels, I chose one for you. She will be waiting for you and will take care of you.”
“But tell me,” said the unborn child, “here in Heaven, I don’t do anything else but sing and smile, that’s enough for me to be happy.”
God said, “Your angel will sing for you and will also smile for you every day. And you will feel your angel’s love and be happy.”
“And how an I going to be able to understand when people talk to me, if I don’t know the language that men talk?”
“Your angle will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak.”
“And what an I going to do when I want to talk to you?”
“Your angel will place your hands together and will teach you how to pray.”
”I’ve heard that on Earth there are bad men. Who will protect me?”
”Your angels will defend you even if it means risking its life.”
”But I will always be sad because I will not see you anymore.”
“Your angel will always talk to you about me and will teach you the way for you to come back to me, even though I will always be next to you.”
At that moment there was much peace in Heaven, but voices from Earth could already be heard, and the child in a hurry asked softly, “Oh God, if I am about to leave not, please tell me my angel’s name.”
”Your angel’s name is of no importance; you will call your angel Mommy.”
Connor my angel please stay strong for you give me strength to wake up everyday and to face each day with a new challenge but for now my challenge in life is to raise the funds for you and to get this cancer out of your body for it is not time for my precious flower to be picked from my garden, I will keep on watering my flower until my flower can’t be watered anymore. To Bruce stay strong I know it is hard sometimes but we are going to make it just remember that I love you from the bottom of my heart and that this time that we as a family are going through is the most difficult time any family can go through. Those who has been down this road knows what we are talking about. And to every little warrior out there who is fighting this horrible disease DON’T GIVE UP! For we are all going to beat it. STAY POSITIVE!
25th February 2006
Being happy for the other person
When that person is happy
Being sad for the other person
When that person is sad
Being together in good times
And being together in bad times
Love is the source of strength
Well let me start by saying thank you so much to the Milnerton Fire station for entertaining Connor and his friends. I haven’t seen Connor ever breathing for he just did not stop talking and everything was just so “cool”, when we got there he was over excited it took quite a while to get the boys to calm down but at the end of the day they all had fun even though Connor got pretty wet but that did not bother him at all he just wanted to know when are they going for a ride. He got to go on a pretend ride anyway.
Today Connor had a ball of a time first we went to a spin-a-thon which he thought everybody is silly for being on bicycles that is not going anywhere. Thereafter we had a Jet-ski Fundraising event on behalf of Connor, which he loved so much that he had asked Bruce and I to please buy him and his brother a boat, and a jet ski for their own personal use. He can’t stop talking about the amount of fun he had today, at one stage we thought that he was never going to get out of his wetsuit but he eventually did. He is doing so well and he is so happy and full of energy when you see him you actually sometimes wonder if this child really have cancer for he has more energy in the world than a bunch of adrenalin junkies. To Connor my boy keep up the strength and like I would like to quote a couple of words from a letter that Lance Armstrong have send him yes people The Lance Armstrong who has beaten cancer he wrote to our Connor
“Dear friend, Cancer is a funny illness that comes in all shapes and sizes. Sometimes it’s a short fight, sometimes it’s a long fight, but the key word is fight. Fight for yourself. Fight for others. Your strength inspires millions. Know that you are not alone. Millions of people around the world are fighting for their own lives or the lives of their loved ones. Remember, unity is strength, knowledge is power and attitude is everything.”
So Connor now you can see that there is even celebrities out there who are supporting you through this and don’t give up the fight inside that little body of yours for we are going to beat the cancer. Sleep tight my love for tomorrow is another day full of laughter and fun. I will let all of you know how it went with Connor’s wine launch for that is happening early tomorrow morning and our big golf day is on Monday so till next time goodnight everyone., and don’t forget to kiss and hug your little ones tonight.
21 February 2006
Nothing should be prized more highly than the value of each day.
After a hectic weekend, here we are back to school for Connor which he loves so much. Some parents tells me thank God for school for they don’t know what they would be doing with their kids if there was not such a thing., yes I know we all say that sometimes but before we know it they will be in Varsity or on one of those working holidays. Please everyone keep your thumbs up for Harrison is in hospital with pneumonia. We here in South Africa are praying for him and know that he will get better. For those of you who have not gone onto Harrison site or who don’t know Harrison please go and visit him. He is just like Connor fighting this battle with this horrible disease Neuroblastoma. A mouthful don’t you think. Connor is growing so fast I can’t believe it he wears a size 12 shoe, just the other day he was this tiny baby crawling around and look at him now. Even has a girlfriend who is apparently his wife now her name is Caitlin. Connor does not know it yet but I have arranged with the Fire Brigade to take him there on Friday the 24th February to meet all the Fire Fighters, for his dream is to become a Fire Fighter one day. I have also arrange for some of his friends to be joining him so I can’t wait to see the excitement on his face when we get there. We also have a very busy weekend a head of us but that is what we need and that is to stay focus and busy for we will reach our target so to Melissa and Dylan and Gina and Harrison so hope to see you guys soon at Sloan Kettering. Keep up the fighting spirit for we are going to make it!!!
Friday 17 February 2006
You’ve got to dance like nobody’s watching,
Dream like you will live forever,
Live like you’re going to die tomorrow
And love like it’s never going to hurt.
– author unknown
Hello everybody sorry for only getting back on line now but we have had a few problems with our internet but not to worry as you can see we are back and everything has been sorted out. Connor had chemo last week and it went pretty well. Dr Desai had a chest x-ray done but it still shows that the tumour has not shrunk or gone away it is still there. Connor’s blood counts were quite nice., unfortunately he picked up a viral infection and was put on to antibiotics he is better but still has a bit of a cough. Fundraising wise we have been very busy and as you know every weekend so far there is a function or two happening, which is good for it, means we are getting closer to our goal financially wise. Health wise I am praying so hard that I could just wake up one morning and the cancer could be gone and then when I see Connor the reality hit me so hard that my boy still has cancer. The hardest thing of all it that why much such a thing like cancer happen to a innocent child for people to get to see what life is all about. Friends that you never thought of have come knocking on our door offering help and then you get those who are too embarrassed for what you are doing. Believe me if they were in our shoes they will be doing the exact same thing. So for now we are still fighting our battle with Neuroblastoma and please let us just hope and pray that we make the funds in time for it will mean we are one step closer to a life free from Neuroblastoma.
9th February 2006
Children think we are their strength, the truth is they are ours!
Connor had chemo on Monday and it went well, for he is still having a good “quality of life” and living it to the fullest. Connor was so excited for he got to meet the AWF Wrestlers and he had a day full of laughter and fun, and just to see him happy and smiling makes our day, for that is how we want to see him. Speical thank to Bronsen and Shaun Connor enjoyed his day with you guys, can’t wait for the photo’s to show everyone. I know there is people out there who are so negative and say things like “why do you bother he is going to die anyway” well let me tell you something yes we are all going to die but Connor is not going to die now he will out live me, and for those people out there who is so negative all I can say is that I feel sorry for you for I can already see that Connor is teaching a lot of people out there to be thankful for who they are and what they have, for some people money means more than to appreciate your health and loved ones. As a parent with a child with whether it is cancer or another terminal illness it is not easy and for people to judge us for what we are doing, I am sorry but what we are doing is to save our son, at the end of the day no matter what the cost will be for he is not the only one who is suffering there is a lot more children out there just like Connor fighting this type of cancer who also needs love and support and whose families are also struggling to come to terms that their children are dying. For we parents of children with Neuroblastoma we will not give up the fight for we will fight this battle and hope and pray that there is a life free from Neuroblastoma around the corner.
A Son is a wonderful blessing
A treasure from above
He’s laughter, warmth and special charm
He’s thoughtfulness and love
A son brings a special joy,
That comes from deep inside
And as he grows to manhood
He fills your heart with pride
With every year that passes,
He’s more special than before
Through every stage, through every age,
You love him even more
No words can describe the warm memories,
The pride and gratitude too
That comes from having a son,
To love and cherish.. just like you
Connor my boy you are the bravest boy and you have such a strong spirit for one day in the far away future we will be sitting back and reading this journal and then you will understand why mommy and daddy did what we had to do. For this is not an easy road but you will thank us and we feel honoured to be your parents and to be following this road trip with you. Just remember we love you and always will. You have given mommy so much strength that I really have thought some days when I get up how am I going to get through this day but at the end of the day it is not about me or daddy or Aidan but to see you happy and enjoy every day of your life. We would like to say to everybody out there thank you so much for supporting us as a family it means a lot to us., for our friends and family thank you thank you for your support. To my fundraising team thank you so much for everything you guys are doing for us., Keep up the Hard and good work, especially thank you for Bernie who even resigned her job to do fundraising for Connor full time, thank you my friend for friends like you are friends for life. Must go now for it is time to collect the little monster from school.
8th February 2006
You have taught me patience
To rejoice in small gains, which others take for, granted
You have taught me tolerance
To accept that your perspective is different
And deserves respect.
You have taught me courage
To fight for you when no one else will
You have taught me endurance
To go on when I feel I can’t any more.
You have taught me humility
To accept when I can’t make things better
But can only be here for you.
You have taught me to love
At a deeper level than I ever thought possible
– Author Unknown
Hi there everyone sorry for taking so long to let you know how things are but we are so busy with our fundraising events that none of us even have time to breathe. For those of you who don’t know Connor’s dream came true thanks to the Reach for a dream Foundation. We went to Port Elizabeth last week and stayed at Bushman’s Lodge and was catered and entertained by Shamwari Lodge and Bushman’s. It was wonderful for Connor got to see the Big 5 and more. He was over excited when he got to see the animals just making double sure that they are not going to bite him. We managed to get very close to some of the animals but his favourite was the lions. We also went on a boat cruise where he got to see baboons but he was more interested trying to see hippos which he saw only when we went for our game drive. For those of you who don’t know Shamwari Lodge that is where John Travolta and his family stayed when they came to South Africa last year. After that we went to the Aquarium where he interacted with the dolphins and got kissed by a seal for he complained about his fishy breath. They also had a snake park there so he was even more impressed and happy with this trip for he could touch snakes as well but Cindy from Reach for a dream who joined us was not daring to join Connor with that for she does not like snakes. He told us that she reminded him of his Grandma for she is also scared of snakes. Connor could not wait for us to get home for he just wanted to be with his friends he just wanted to know while we were on our holiday can he go and visit Tristan. See Tristan is his best friend, like Tristan says “Connor is his brother from another mother”. After all the fun we headed back to the airport and back to “normal” life in Cape Town. Arrived and had our first fundraising event, it went very well. Now it is just one event after another. As for Connor back to school to have fun and be with his friends.
The Chosen Mothers
By Erma Bombeck
Most women become a mother by accident,
Some by choice, and a few by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in giant ledger….
“Armstrong, Beth, Son, patron saint Matthew”
“Forrest, Marjorie, daughter, patron saint Cecilia”
“Rutledge, Carrie, twins, patron saint Greard.”
Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious.” why this one, God? She is so happy.”
“Exactly,” smiles God,” Could I give a child with cancer a mother who does not know laughter? That would be cruel.”
“But, does she have patience?” asks the angel,” I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, She will handle it.”
“I watched her today, “said God.” she has that feeling of self independence that is so rare and necessary in a mother.
You see, the child I am going to give her has its own world.
She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she believes in you,” said the angel.
“No matter, I can fix that. This one is perfect, She has just enough selfishness.”
The angel gasps, “Selfishness? Is that virtue?”
God nods.” If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is the women I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see…. Ignorance, cruelty, predudice…and allow her to rise above then.”
“And what about her patron saint” asks the angel, his pen poised in mid air.
God smiles and says….
“A mirror will suffice.”
Hello everyone, first of all I would like to say welcome to Connor’s website I hope that you will stay with us for our journey is not over., see you heard from Connor what we as a family been through the last couple of months and yet we have hoped and prayed that we will start 2006 with no Cancer, unfortunately it did not happen. For we have to go through another year of “hell”. For those of you who don’t know us welcome to “ A Family’s Journey living with a child who has Cancer”. Connor was diagnosed in July 2005 with Stage IV Neuroblastoma, (and no he was not born with it) just a couple of days after he celebrated his 4th birthday. Neuroblastoma is a tumour arising up the back of the child’s abdomen and chest and into the skull following the line of the spinal cord (neuronerve, blastoma + collection of tumour cell). The most common site for the tumour to grow is the abdomen. About 50% start in the adrenal gland above the kidney. Some towards the neck. Much more rarely, the tumour may start in the brain itself. Connor’s is in his chest (paraspinal mass). Dr Desai and her team at Red Cross Children Hospital were hoping that Connor would be cancer free but then 3 weeks before Christmas 2005 Bruce and I were told that there is no more they could do for Connor but to make him comfortable for it is not the tumour that is going to kill him but the cancer in his bones and bonemarrow., therefore Connor is currently receiving maintenance chemo that gives him “quality of life” with us as his family. As a parent with a child who has cancer it is not easy for there are days when I feel so emotional for what my child has to go through on a daily basis and yet he still walks around with the biggest smile on his face. To everyone out there please continue to pray for Connor and all the children who need it, there are so many it makes me realize just how grateful I am to have this time with Connor. So tonight hug your little ones a little tighter when you go to be and thank God that you child is healthy for things can happen any time it is like they say that there is no guarantee that bad things won’t happen to good people. Living with a child who has cancer is not easy for there is a lot you have to look out for, not just the fevers some of them get after having chemo, the vomiting, hair loss which you have to explain why this is happening to them, the teasing they get, some chemo even affects their hearing, kidney failure therefore we have to make sure that he also drink a lot of water, bruising, there is so much more but then we will be sitting here all day and it will just make us even sadder to know what these children go through. Some children also have a lot of pain but there is at least something to help them deal with it. Wow, I can’t still remember the day we were told that they have found a tumour in his chest and until today it still feel like we are living in a dream and we are going to wake up and it this nightmare will all be over. I look at Connor and I just can’t believe that he has cancer for the day the doctor told me it felt like my heart was ripped out of my chest. I wanted to die for I could not see my life and our lives as a family without Connor for not only is he my firstborn but I live for my husband and children everyday. To me they are the air that I breath, the earth that I walk on everyday. In fact the mean the world to me and there is NO WAY that I am going to sit back and accept what the doctors have told us for Bruce and I will do whatever we can with the support from family and friends to get Connor to New York. I would like to say a special thanks to all my friends who have brought meals when Connor had his aggressive chemo. To Bernie you are a life-safer for not only did you organized all the cooking but you are still by my side for you know that we appreciate everything you are doing for us thank you my friend for all your help, support and for being there whenever I need a shoulder to cry on, for just like Nita you have become one of my dearest and best friends. To all of you out there appreciate what you have for whether it is a healthy child, or a close friend be grateful for what you have. Nita to you and “your people” I would like to say thank you for everything you have done for us so far especially “Mary’s soup”. Connor in the present moment is doing GREAT with his treatments. Everyday when I look at him he amazes me with his courage and strength for me he is truly our pillar of strength for he has a fighting spirit inside him that seems to come out when we lease expect it especially for we know what is going on in that body of his. This year went by so fast I was still wondering how did we get this far and then I just say “Thank you God” for letting us get so far. It’s amazing how your friends change over this period of time for those you thought are your friends become people who don’t want to be associated with you why for all we are trying to do is saving our child, then come the questions how far are we willing to take it. Well dear friends read up on kids with Neuroblastoma and other type of cancers. We as his parents will know when to stop for the treatment that we looking at that Connor will receive will SAVE him, and prevent the cancer from coming back. I was send this poem by a friend for it really touched me:
STORY OF THE 4 CANDLES
THE FOUR CANDLES – AUTHOR UNKOWN
THE FOUR CANDLES BURNED SLOWLY.
THEIR AMBIANCE WAS SO SOFT YOU COULD HEAR THEM SPEAK.
THE FIRST CANDLE SAID, “ I AM PEACE, BUT THESES DAYS NOBODY WANTS TO KEEP ME LIT.”
THEN PEACE’S FLAME SLOWLY DIMINISHES AND GOES OUT COMPLETELY.
THE SECOND CANDLE SAYS,” I AM FAITH, BUT THESE DAYS, I AM NO LONGER INDISPENSABLE.”
THEN FAITH’S FLAME SLOWLY DIMINISHED AND GOES OUT COMPLETELY.
SADLY THE THIRD CANDLE SPOKE,”I AM LOVE AND I HAVEN’T THE STRENGHT TO STAY LIT ANY LONGER.”
“PEOPLE PUT ME ASIDE AND DON’T UNDERSTAND MY IMPORTANCE. THEY EVEN FORGET TO LOVE THOSE WHO ARE NEAREST TO THEM.” AND WAITING NO LONGER, LOVE GOES OUT COMPLETELY. SUDDENLY
A CHILD ENTERS THE ROOM AND SEES THE THREE CANDLES NO LONGER BURNING. THE CHILD BEGINS TO CRY,”WHY ARE YOU NOT BURNING? YOU ARE SUPPOSED TO STAY LIT UNTIL THE END.”
THEN THE FOURTH CANDLE SPOKE GENTLY TO THE LITTLE BOY,”DON’T BE AFRAID FOR I AM HOPE, AND WHILE I STILL BURN, WE CAN RE-LIGHT THE OTHER CANDLES.” WITH SHING EYES THE CHILD TOOK THE CANDLE OF HOPE AND LIT THE OTHER THREE CANDLES. NEVER LET THE FLAME OF HOPE GO OUT OF YOUR LIFE. WITH HOPE NO MATTER HOW BAD THINGS LOOK AND ARE…. PEACE, FAITH AND LOVE CAN SHINE BRIGHTLY IN OUR LIVES.
Please guys please visit Dillan’s page and Harrison for they are also in the same war as Connor to fight Neuroblastoma. See the links on Connor’s site. To Dr Desai, Dr Mark Hendricks, Helen and the rest of the staff at Red Cross Hospital working in the oncology unit, keep up the good and hard work, and thank you so much from the bottom of my heart for everything you have and are still doing for Connor. So bye for now I will speak to you all later.
Hello everyone, my name is Connor John Gerber and I am 4 ½ years old, I was born on the 27th of June 2001 in Cape Town South Africa. I would like to share my journey that we as a family have travelled the last 7 months. See at school I had fallen of the jungle gum and hurt my leg, so when mommy came to fetch me from school she knew something was wrong for I was limping. The teachers told her what happened but she said that she would take me to the doctor anyway to have a check up to make sure that nothing was broken or sprained. She phoned daddy to let him know what happened and told him that she is taking me to the doctor just to double check. Doctor told mommy not to worry for I am a boy and we tend to play ruff and everything is fine. All of a sudden I developed high fevers, the limping got worse, the brightness of the television was hurting my eyes and I also could not handle any loud noises. My poor daddy had to carry me everywhere for it was to painful for me to walk., so back to doctors we go, then we were told that I had a viral infection and was given antibiotics immediately. That did not help for it did not explain why the fevers were just carrying on and the pain in my body did not go away. My body was so sore that I could not even played with my baby brother Aidan at the time that was only 6 months old when all this was happening to me. Then one day after my 4th birthday I woke up and could not move, I called mommy who came running into my room and told her that I can’t move my head is to sore to lift up and my body is sore. Mommy picked me up and I was crying because of the amount of pain. She told daddy that they needed to get me to hospital immediately, but daddy first phoned the doctor to hear what he has to say but he said to bring him in immediately. They did some more test that they which involved some needlework but I was very brave. Then daddy and I got home and mommy came running out to hear what the doctor said, I could not hear what they were talking about but daddy was crying and mommy started to cry. We went to Red Cross Hospital on the Monday where I had to go through some more test. The Wednesday I had my first bone marrow biopsy and on the Thursday mommy and daddy went to find out what the results were. A special doctor who is called an oncologist big word told them the news. Mommy and daddy came home and told me that the doctor’s have found a very ugly bug in my body and that it is called Cancer, and that I will be starting some special medicine the following week called Chemo that will help to take the pain away and to take my bug away., for the cancer bug, the mommy I call her was found in my chest, and she had babies who she does not love and they went through my whole body and they have spread to my bones and bone marrow which explain the pain I had all the time. I cried for I was scared of all the needle work but daddy and mommy said that I will be fine for they will always be with me. Then that day came and I got to meet the most kindest people ever at first I was very scared of them for I did not know what was going to happen to me they were Helen and Dr Mark Hendricks for which I still see when I go in. My hair started to fall out like the other children I saw around me and I ask mommy why is this happening mommy told me that is because the medicine is working and that my hair will grow back I must not worry about it for now I look just like daddy. But the secret is that mine will grow back and daddies wont so he might be a bit jealous so we were laughing about that. I also started to vomit from the chemo, for me that was also new I said to mommy “why is all this happening to me and she said Connor you are so small but very strong and brave for you must not be scared this is all to the special medicines that you are getting that is making you better and the reason why you are vomiting is because the medicine is working. I was happy to hear that knowing that my bug is going away but I said to mommy my tummy is sore from all the vomiting she assure me that everything was going to be fine. So far I have had 7 intense courses of chemo, blood transfusions, platelet transfusions, bone marrows biopsies, MIBG scans, CT scans and MRI scans. At this points of time I know that daddy and mommy are doing a lot of things for I was told that they are raising money for me for we are going on a long holiday to New York to find better medicine for my Bug called Cancer is still in my body. So for now I am going to love and leave you all and you will be hearing the rest of my story or journey as we call it, from my mommy, who I call Super Mommy for she has given me strength and courage and kept me smiling through all of this. Thank you for visiting my website please feel free to send me a message on my message board and mommy my secretary will be doing all the corresponding. Thank God for Mommies and Daddies!