Tuesday, March 31, 2009

Subject: Jed's update 30 March 2009

Hi there,

Jed's platelet count is up to 50, but now his white cells are dropping; they are at 2.2 - chemo is still on hold and they have actually asked us to return the chemo medication. I always thought chemo was like antibiotics YOU HAD TO COMPLETE THE COURSE OR ELSE.....? Radiation went ahead today with the booster session. The mask is very tight on his head now and they put little bits of cotton wool inside the mask to ensure that the pressure doesn't hurt him. The ladies are so patient with him.

With the white cell count going down his immune system is weakened, however as I sit watching him play PS2, although slightly pale, he is back to his normal naughty self. I love the sound of his jumping on the bed and just now i heard him sneaking a quick jump.

A special heartfelt thank you for everyone who continues to contribute to Jed's fund. I don't have the words to thank you anymore, so I hand over to Jed.

Dear everyone especially my mommy's friends at DHL,

I want to say thank you for making sure that my mommy can look after me and get the best medicines for me. She makes me drink milkshakes and she says it will give me muscles and make me strong.

I love you guys for taking this one stress away from my mommy!

Please remember to ask Jesus to make me better and kill all the ballies in my head!

Love and hugs
Jed x x

Bon, Ray and Jed

PS: Attached is a picture of Jed's Grannys (I talk about them so often I thought you would like to see what they look like.) Bonny's mom is Funny Gwan, I am Soccer Gwan and Bob Gwan is Raymond's mom in case you have difficulty identifying us.

Saturday, March 28, 2009


27th March 2009

Hi there,

I'm sitting here waiting for Jed to wake up so I thought I'd write to my network of strength. I'm not doing well, my heart is very sore today. I'm having those; oh why me moments;, why must I hold my son down while they prick, pick and poke him; why did I give him the chemo that made him so weak and sick; why did I decide to let them fry his tiny brain with radiation; why must I take him to that place of sick children.. bla bla bla... and yes, I know why, coz special moms get special children....aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa screaming on top of my voice!

Thank you I actually needed to get that off my chest!

Yesterday was kuk (can you say kuk on e-mail??). The professor battled to find a vein to do the transfusion so she had to prick him a few times, once she managed to get one, Jed pulled it right out and the process began again! Jed looked at the Professor and screamed at her "why are you hurting me, it is not berry nice, YOU KNOW"... We also counted Ben10 1, Ben10 2 and he counted through heart broken sobs... but the brilliant Prof got a vein and the transfusion went well. The platelets came from a donor. That story the doctor told us that they do it direct from dad turns out to be only in the movies, in real life, they need to be processed and prepared first. What I want to encourage everyone to do is, please donate blood if you can. Some stranger saved Jed on Friday, I hope that we all get to be a stranger that saves someone one day, so go out and donate!!! (by the way, I never have, but will do it as soon as the opportunity comes up; Norms (Norman George) - my good friend would always try drag me and I just couldn't be bothered, I promise I will be "bothered" from now on)

On Monday we go for another blood test at the Gen. Jed's new name for the Gen is "The Picking (pricking) Station". I will update Jo as soon as I know the results. We would need another transfusion if it remains low. At "The Picking Station" I broke down sobbing when they couldn't find a vein and I was so scared for the transfusion, an old'ish Indian man came over to me with his daughter and asked me why I was crying.... I told him I was so scared to let Jed go through the transfusion. He introduced me to his daughter, a 9 year old with beautiful hair and a gorgeous smile. She is a leukemia survivor he explained and she is in remission, she too had a platelet transfusion. I asked him, "please tell me the side effects, what if it rejects them, what if he gets sicker from it, please please just tell me the side effects (sniff sniff)", he smiled and he said, "the side effect is HE WILL GET WELL from it, yes, he'll get stronger and things will get better"....... a devoted father, who promised to pray for us. I love that old'ish Indian dad.

The Picking Station is actually not that bad, CHOC comes and does baking with the kids or games, they have a big TV in the play room with DSTV on cartoons. I met 5 moms with children who have leukemia (hell now this leukemia is a big childhood cancer sickness), allot of the children were in remission and doing well. Everyone praised the Gen and Prof Janet Poole. I feel more comfortable going there now.

In closing before my long bla bla e-mail continues for another 500 pages I want to say, thank you for the donations we received PLEASE PLEASE use your name as a reference so that I can say thank you. Please don't take that away from me, let me say thank you for helping my son, please! The account is on about R10 000 and we are going to use some of it soon for the medical "self payment gap"! My uncle is exploring medical options in the US and Australia; if he finds a better option then we are gonna have to look into it. I have sent him all the MRI reports, medical reports, treatment plans going forward and info, we are waiting now for their input.

I'm having some arguments with our Heavenly Father and it's not cool please pray for my faith...mmmmm! Please pray as always for Jed, Jordi and every mom and child with cancer!

Also THANK God for the donor who gave Jed the transfusion, for Jed's grannies (who stand by us) and the old'ish Indian daddy (maybe God sent him)

With love and gentle hugs (we only do gentle ones when platelets are low)
Bon, Ray and Jed x x x

Thursday, March 26, 2009

Platelet Update

26th March 2009


I have received lots of messages asking what is happening with Jed. Radiation is on hold as they review tests. We will have news tomorrow on his platelet count. Jed is home, the risk of infection will be increased if he is sent to hospital, the doctors are aware, I know what to look out for and will take him to Linksfield at the first sign of bleeding. He is pale today and feeling lazy but he is playing his games (PS2) and drinking. Jed seems to be less itchy (i hope this is a good sign - I cut his nails down to nothing) but the spots are still on his little body!

My mom and aunt are coming through as I am feeling very anxious and I am counting the seconds now till they arrive. Please don't call me, I'm still dam emotional and my HAPPY face is on today for Jed, one call from ANY of you and fake happy face will flop!

I attached a baby picture of Jed taken when we went to Egypt to visit my precious friend Anthony and his wife Shirley. Just wanted you to see him when he was perfectly healthy and whole! Please God restore his precious little body!

Love and hugs

Tuesday, March 24, 2009

Jed's platelets

24th March 2009

Hi everyone,

Just a quick request: Jed's Blood Platelets seem lower to me and I'm very stressed out. Please may I request that we take a minute to pray for him. I have an appointment with Professor Janet Poole at 07h30 for blood tests, from there we will have x-rays, and booster radiation. Ray is on stand-by and ready if a transfusion is required however the power of your wonderful prayers is what we need.

I have attached a picture of Jed's back, you don't seem to be able to see clearly but he has red/purple spots all over his back and body. His little bum and arms are very red and look bruised from his shirt and undies. This is a result of the low platelets. His hair has fallen out from the radiation so in this photo you get to see clearly where they radiate.

Things I have to be thankful for today, he ate, he played with his gran (Ray's mom - who wore a mask and sterilized her whole body- very sexy new accessory for gran) and he is not appearing sick in any way, his energy is low but nothing concerning! ONLY THE DAM SPOTS AND BRUISING!

With love and a slightly upsidedown smile,
Bon x x


27th March 2009

We have set up a fund account for Jed and if anyone would like to do some FUND RAISINGet) for Jed this would be most welcome, brain cancer does tend to get expensive! Please know that this is not an expectation but only if you can. Any money contributed to the account will be used for medical expenses, supplements for Jed (this is about a R1000 month) and any special needs. Anyone in my family who is paying for Aunty Bee's care giver, your money will NOT be welcome in this account!!!!!!

First National Bank
Account No:62218655184
Branch: Greenstone
Branch code: 201510
Reference: Your name
Swift Code: FirNZAJJA 188
Account is in Jed's name: Jed Suckling and is linked to my cheque account - Ray and I have access to the account. Account name: Jed Suckling
Photo of Jed after his first brain surgery.

Monday, March 23, 2009

Blood test results (ho hum) and some good shopping was done!

21st March 2009

Hi there,

I've had a couple of difficult days emotionally so I apologise for not updating you but I'm back now!

Jed had blood tests on Friday and the doctors couldn't find a vein. His veins are clotting (and invisible);i t took 3 hours and about 4 attempts. Dr Klass looked finished, I'd been crying since 9am and dad (Ray) was the hero who managed to stay calm and remain the strength! I made Ray meet me at Linksfield and he did it without complaining!

I recieved the results today (Saturday morning).

Jed's white blood cell count has dropped to 3000. Chemotherapy kills fast dividing cancer cells. It also ends up killing normal cells in the body, like cells in the bone marrow that maintain the supply of white cells in the blood. It is normal for them to fall temporarily with most chemotherapy drugs. Jed's white cell count is at it's lowest now. The job description for a white blood cell (as I understand it) is to protect the body from infections. When the count drops the risk of infection is increased. It becomes dangerous as the body can't fight as the white cell count is low. I have to now monitor his temperture, check for coughs, loose stools (not an issue as we don't have many of these), boils or abscesses, mouth sores or problems with swollowing.

To avoid the chances of infections we stay home 24/7 and drive each other crazy!!!! We avoid extremes of temperature (no fans, heaters,) and make sure food is well cooked (he doesn't eat so that is never an issue).

If the drop continues the doctors may delay further chemo for a while.

Jed's platelet count is 51 000 this is also very very very low. The normal range for platelet counts is between 150 000 and 450 000 per cubic millimeter. What this means is my little man is very bruised and it seems sore if you even touch him too hard. He has lots of bruises on his butt and hips from bashing himself during playtime. He has no other signs of low platelet counts but we are keeping him indoors and well protected.

If the platelet count does not get better they will do platelet transfusions. Transfused platelets last a few days and must often be repeatedly given. Ray will be the donor of the platelets and Jed's doctor have already done the tests to ensure Jed is ready. The transfusion is direct from dad to son. However, if we stop chemo for a while this may all improve.

Lastly, a special huge thank you to everyone who has donated money towards Jed. May I please ask you to mail me if you donate or use your name as a reference, I would like to say thank you to you personally! We have already received money and we used some of it today. Dad looked after Jed while I went out. (This was good for me!) We got him the special car chair with the protective head pillows, the one we had did not support his neck nicely so his head flops around when he is asleep. This was a huge worry for me as his neck muscles are weakened from surgery. Now I can rest assured he is well protected during the long drives to and from the hospital. This chair was R1499. I then bought his milk/food supplement, pedisure (R1222) for the month (or more), purity fruits, juice and a few bottles.

I have included a picture of how the money was spent, you will also notice a Reggies bag, because people donated money towards the essentials I allowed myself to OVERSPEND a little on the non essentials, I got him 4 play station games, educational games, beads, picture making set, a train made of wood that you build and some puzzles. I felt I wanted to do it to keep him busy so staying home to be fun! Thank you all for allowing me to spoil my son coz you are taking care of the essentials, I promise not to go crazy again! This was just a once off crazy mommy moment that I needed. The rest of the money will be held for medical bills.

Love and hugs
Bon, Ray and Jed x x x

Jed is doing so well! Thank you!

17th March 2009

Hello everyone,

I have had the best day!!! Jed went off to radiation with no hassles. The play therapy report came back from last week showing that Jed is a very well adjusted and happy normal little boy. He is aware that he is sick but has no fear relating to his illness and well being. Considering this boy has moved house, had 2 very major operations and undergone some significant changes; I am very proud that he is doing so well.

Thank you Lulu (my sister Shelly aka Aunty Jelly) for the lovely presents. Jed was running around shooting all the radiologists and having a wonderful day. The new teddy's name is dog! Dog Jed (his full name). We really do have lots of bribes for this week.... x x x

We also saw Reach for a Dream today and Jed received a Sony Playstation (the early addition) and a BEN10 duvet cover! Awesome. Now for those of you who are starting to think that little man Jed is getting VERY spoilt I have a great answer...Firstly, I gave away all his toys when I packed up house in PMB (it was just too expensive to move them and they went to my staff who really appreciated it), he is home ALL day so he REALLY plays with his toys and lastly I can't think of a little man who deserves to be spoilt more. His appreciation for the tiniest present is amazing and he is LOVING the additional attention. He is also the only 4 year old I know that could lay still through radiation (most go under GA), he also swallows 5 large capsules a day (and they are huge) and the supplements, nausea medication, tummy medication bla bla bla. I still discipline him when he is naughty and before the grans go off the rails about this, I have too; otherwise he won't listen through the treatment. Imagine he started moving through radiation and didn't listen. So spoilt he is, but spoilt brat I promise you NOT!!! :-)

Janet and I then took Jed to the zoo (ja ja) and we had a wonderful day. We hired a cart so Jed and Janet (24 weeks pregnant) didn't have to walk, it was so much fun. Jed had a wonderful day.

So from this grateful mommy, a special thank you to everyone for the prayers. Jed is doing very well on his treatment, my brother is making huge progress, my cousin Cindy pulled through a major operation today and my aunts tumour has shrunk.... we just keep praying now for a miracle for Jed (and i know it will happen with your love and prayers!!)

Attached is a picture of Jed at the zoo! Our own monkey!

Lots and lots of love

Thanks Durban friends!

16th March 2009

Hello everyone,

Jed had a good weekend and radiation went very well today. Our main concern at the moment is his eating, he is eating VERY little to nothing. His energy levels are still very high and he is bouncing around. The nausea medication has increased and although he does still vomit, it seems to be al lot less.

We have set up a fund account for Jed and if anyone would like to do some FUND RAISING (eg not from your own budget) for Jed this would be most welcome, brain cancer does tend to get expensive! Please know that this is not an expectation but only if you can. Any money contributed to the account will be used for medical expenses, supplements for Jed (this is about a R1000 month) and any special needs. Anyone in my family who is paying for Aunty Bee's care giver, your money will NOT be welcome in this account!!!!!!

First National Bank
Account No:62218655184
Branch: Greenstone
Branch code: 201510

Reference: Jed (medical)

The account is in Jed's name and is linked to my cheque account - Ray and I have access to the account.

On Friday we had radiation and blood count tests (still waiting for results) and on the way I realised I didn't have any bribes and I got a call from Janet (my friend) to say there was a parcel for me at her house. I went past her home, ran in grabbed it and flew out. As I arrived at the hospital Jed started screaming (he knows that this is the picking place and UGLY Dr Klass steals his blood). I opened the box and inside were all these cool goodies for Jed (blush blush me too!)... I told him to close his eyes and he could choice two presents, we did this before and after each test, radiation and chemo. The box was so full I still have 8 bribes and we used it all weekend with the chemo. Donovan, Ramolla and the Durban team, I cried when I received the box and I can't believe your timing. I hate Fridays blood tests and you made it just a little easier for me! I just didn't get to the shops and Jed needed those little goodies, it just makes it easier. I love you guys.

Attached is a picture of Jed with his new PJ's from Ramolla... he thinks he is an alien monster in his new PJ's!

Thanks for all your love and prayers for Jed.

Please pray for Jordi who has a chest infection (he is doing radiation at the moment and goes under GA - they have had to put his treatment on hold)

With lots of love and hugs
Bon and Jed x x x

A full medical update (another YEAR of chemo).... a special thank you to Steve and team (i miss you guys so much) and thanks to Jordi's family!

12th March 2009

Hi all,

Yesterday was such a busy day, radiation went very well.

Ray and I then went to see Professor Janet Poole at the JHB General Hospital. The mission to get to the children's oncology is awful. We waited 25 minutes for the lift up to the fifth floor, then had to fight our way to the next lift through the crowds of people, and then follow the yellow/orange line, up to the 9th floor. In total it took about 35 mins from time of parking to arrival at oncology. The drive was about an hour and fifteen minutes.... the walls are yellow like an old chain smokers bedroom - the kind where you picture a painting being moved and THAT spot is white - it is old and dirty (not oncology the rest of the place). Then you walk into HELL, about 14 little beds in a row with tiny little people laying sick on drips, with no hair, the walk up is a pleasure compared to what you see at arrival. Let's just say I hate going to the JHB General Hospital and guess what, I GET TO GO FOR A WHOLE YEAR!!!!! We discussed the following with Dr Poole:

What is the next step after this round of 6 weeks of chemo and radiation:

It is a year of chemo at the JHB GENERAL HOSPITAL. That decision is ours, mmmm, to think that we have a choice. The type of chemo is VINCRISTINE AND CARBOPLATINUM. The reason why it has to be at the Gen is because Dr Poole works daily out of the Gen and that is the only place she will see Jed daily. We could go to Donald Gordan but then we will see her only every 7 weeks as 7 doctors take turns there. As Jed has such a rare cancer and the treatment is not used very often we need to be near her. Jed will be treated as an outpatient and I will travel in and out daily. It will be about 10 days on and then a couple of days break and then 10 on again.... she will confirm later how it will work. Jed will have an operation to insert a port into his chest, this will be for the chemo drip (i'm told by Jordi's mom and Soccer Gwan that this is not a big deal and only takes about 30 mins). This thought sickens me but like Jordi's mom said to me, Dr Poole is fighting with you. She really is an amazing professor; she actually spoke to the doctors in America (the ones I stalked) and took their advise on the treatment plan. I still have to work out the drive in and out, and how I will manage if Jed is vomiting. I will look into choc houses or hire someone to help me etc.

We then asked about the Quantronics machine:

She told me it was a load of rubbish. We may still think about it but at this stage Ray and I will listen to Dr Poole. As she said Jed's tumor is in 3 nods and we need to fight it aggressively.

We asked about the Brain Swelling:

She explained that the symptoms of brain swelling is the same as when the tumor is at full size, leg and arm paralyzed with terrible headaches in the morning and vomiting constantly. Jed does not have this (thank you Lord) Basically Jed does not have internal swelling; his is just his head that is swollen on the outside from the radiation (like bad sun burn).

We asked about the constipation and the vomiting:

She prescribed Lactose twice a day and increased the nausea medication.

We asked about diet:

Basically a balanced diet is best, Jed has lost 400 grams in the two weeks and she advised us to use pedisure three times a day and try get him to eat little bits. He loves the pedisure so that is great. As for food well he eats VERY little now. She advised us to stay away from salt and chips. Mostly cancer related to diet is not relevant for children under 5 years old.

I asked once again, what caused this (nag nag nag) ?

She said there is no answer, 2% of these tumours are hereditary and the rest are just out of our control. Not diet related, no fall could have caused it, environment, stress is not relevant!!! So we will never know the answer.

I'd like to end this mail with some positive updates. We received a lovely gift from my boss, Steve and the CPT team. I was so touched by this. Jed loves the Ben10 jacket! On the way home from the hospital Jed had the jacket on and just before we got home he started screaming for me to take it off, I couldn't understand and thought that maybe he didn't like it.... so I took it off and just in time, he vomited all over the car, mess every where, and then he said, "okay mom put my jacket back on now!"... so cute! He slept in the jacket. The Ben10 bag is also so cool.. and thank you for thinking of me... I now have at least ONE reason to bath (don't even dare comment on that!)

Then to Auntie Gen, Uncle Mike, Shane, Jordi's mom and dad, I don't know how to thank you all for the love and support you continuously provide to Jed and I. Your own plates are so full with Jordi's cancer yet you still find energy to visit and surprise my little man with the awesome motorbike. He was overjoyed and he can't stop talking about it. He is a huge Auntie Gen fan and can't stop asking me if he can play with "that girl who bought me my bike".... I ran behind the bike most of today and it was wonderful to see him outdoors and having so much fun. It is so cool as it is battery operated so even when he is exhausted from treatment he can still ride it. I thank you from the bottom of my heart!

With lots of love and a request as always for prayers for Jed, Jordi, the Gwans (Soccer Gwans liver tumours have shrunk - praise God), and for all the precious little ones at the JHB General Hospital.

How life will change for me over the next year, it scares me and breaks my heart so please pray for strength, faith and persistence for this broken mom. It is so strange as no matter how often I hear the facts of Jed's cancer I still believed that this was almost over and life would maybe return to semi normal. I pictured myself in a little half day job, in my own little place with friends around me and going to kiddies parties... well bla bla bla bla.... this fight continues....!

Attached is Ben10 the biker dude (new Jacket and bike!)

Love always
Bon and Jed x x x

Jed's Story

17th March 2009

Jed’s story:

Looking after your tomorrow becomes impossible when you hear the words, CANCER followed by we don’t have a cure, your son has two years to live, and it is BRAIN CANCER. Brain tumours can be benign or malignant. Surprisingly they are the most common tumours in childhood. Yet I have never heard of or come into contact with a child who has one. Cancer was what old people who smoked too much got!
I’m a single mom who lives for her precious, adorable baby boy. Jed Brady Thomas/Suckling was born on the 3rd of November 2004 after 18 hours of labour I saw the most beautiful child I have ever seen in my life. He was so healthy and scored 10 out of 10 for his birth test. I was proud. I counted 10 toes and 10 fingers and smiled at how lucky and blessed I was to have such a healthy little boy!
In August 2008, Jed started showing signs of being slightly ill. He had headaches, he vomited a few times over a period of about a month and he was a little moody. He is normally a gentle, loving little guy and I couldn’t understand his sudden outbursts and temper tantrums. I was told it was normal. Jed’s appetite also got worse, he hardly ate anything and I would worry all day. Other mom’s would tell me to make a game of eating. I was obsessed with getting him to eat. I took him to several paediatricians and doctors and they all seemed to come to the same conclusion; Jed had allergies and they even did an x-ray and confirmed his sinus’ were inflamed and the best treatment was Neurofin for pain and some allergy medication. However, the symptoms didn’t go away and night after night I rushed him to hospital to be told NOTHING was wrong. My gut told me it wasn’t true.
His dad insisted that we do a CT scan and that was when we realised Jed had a brain tumour. It was large but they could operate. I was shocked and could physically feel my heart pounding in my chest. I wanted to scream, run, hide but knew I had to be strong for Jed. The doctors and neurosurgeon put Jed onto corizone to reduce the swelling and prep him for the operation to remove the growth from his Cerebellar Hemisphere. The day before the operation Jed’s hands and leg were shaking but other than that he was fine. He was building puzzles and running up and down the ward like any other healthy child. At night he would roll around in our little hospital bed but I’d sing to him or tell him a story and he would drift off to sleep again in my arms.
The 9 hour wait for the surgery to end was the longest 9 hours of my life. I stood outside the theatre for the whole night hours. I refused to eat, drink or move until I could see my baby was okay. When he came out of theatre I believed the worst fears I’d ever had were over and life could return to normal. The surgeon told us that the tumour was benign and he had removed all of it. The surgeon become my hero, I could almost see a halo around his head...We had spent 4 long weeks in hospital and when Jed had fully recovered we went home to Pietemaritzburg. Jed stayed home with a nanny and an aupair; I decided to home school him for 6 months to ensure that he had fully recovered. I returned to work.
On the 9 th of January 2009 (Friday morning) Jed woke up early so we decided to build a puzzle quick before I went off to work. He built it while I showered and got dressed. I came to have a look and prize him. I said, “wow that is gorgeous my baby, clap hands for Jeddy!”.... my heart sank Jed’s hands could not meet, he looked like a spastic child. I asked him to run to the kitchen and get some water, and he hopped. He looked at me and said “mama I’m wiggling in my leg and arm”. I rushed from Pietermaritzburg back to Johanessburg with tears flowing down my cheeks the whole journey back. I knew the monster tumour was back. I called the nanny and then the aupair, both of them assured me that the whole day on Thursday he had been fine. The aupair even mentioned they had enjoyed a game of soccer and Jed was fine, bouncing around and having fun.
An emergency MRI was done on the Saturday and on Tuesday the 13th of January 2009 the tumour was removed. The pathology report showed a Myxoid tumour that was behaving like cancer. How the hell do you behave like cancer? Let me tell you, you grow faster than any normal cell. You take over, you invade and you cause pain that rips into your soul of your loved ones! You are an intruder, unwelcome and hated! Pain that is physical ripped into my entire body. I had a nervous breakdown that day and was prescribed anti depressants to relieve the anxiety. No pill could take this pain away but I knew this was not about me, it was about Jed and Jed needed me to fight at his side day and night.
On the 12th of February 2009 a follow up MRI was done and I was told that the tumour was back in 3 nods and even more aggressive than the doctors could comprehend. I was petrified. I heard the words rare, Jed has about two years, I’m sorry, and I wish I could do something to ease your pain. I cried loudly and uncontrolled in the surgeons rooms. I wanted to hit him as my body filled with anger. Where was that halo now!!! I wanted to know WHY he had not got all the tumour out. I trusted him to do that, get it out and save my boy! He explained that it was like slicing bread if you leave one crumb the tumour comes back.
No one can understand the hurt and pain a mother feels when she faces her worst fear. I can’t live without Jed, he is my sunrise and my sunset. He is reason I wake up, I work and he is all I need to get me through any day or night. I have slept with Jed in my arms since the day he was born. Now I lay awake praying with all I have inside of me and begging God not to take my son.
Chemo and radiotherapy have started and continue for the next 5 weeks. Jed has two big bold patches on his head from the radiation and each time I look at those patches of missing curls, I feel the hurt that only a mother would understand. My love for Jed is so intense, I have prayed many nights for the Lord to give me the cancer. My life means so little in the bigger picture, at 34 I have had my chance to live and make a few mistakes. At four years old Jed is perfect, he lives to kick his soccer ball and play Ben10 or Ninja Turtles.
Through painful headaches, nose bleeds, surgery, chemo and radiation my baby does not complain, he is brave and the only superhero I have ever met. He is stronger than any man I have met and is beyond amazing.
I’m sharing my story to ask for medical support, guidance or just a loving e-mail to get me through the dark days. I wish there was a support group of mommy’s who understood my pain. I can’t attend a meeting or meet for coffee. Jed and I live in isolation as he goes through his treatment. I have resigned from my job and now look after him 24 hours a day. We live at the home of his dad (my ex of about three years) who pays for all our day to day expenses. His love for his son and made it easy for him to open his home to me and Jed.
With love
(aka Jed’s mommy)

Hair loss sucks, Jordi and Jed, Quantronics and Happy Birthday Christopher!

10th March 2009

Hi all,

Today's fasting and prayer went well, Jed had a good day and dinner tasted LOVELY!

Jed's radiation session went very quick, he was a super star. Michelle (Jordan's mommy) arranged today's bribe. It was full of BEN10 goodies and a very awesome BEN10 speaker thing and the ULTIMATE WATCH. Jed now owns every single BEN10 toy out there! Michelle and Jordan have been on my heart today as I prayed for my own son I thought and prayed for Jordi and Michelle. Jed and I visited with them on Monday and it was a wonderful day. Jordan has the most beautiful loving family and Michelle's strength just amazes me all the time! The boys had a swim together and I promise you I noticed Jordan using his little legs at more in the pool. It seemed allot better than the last time I saw him. My heart was full of pride and hope! Please pray for fear in Jordan, I see a very frightened precious little boy! Ask God to give him reassurance that he is okay and that soon this ordeal with be over and he will be kicking a ball with his friend Jed!

Today is Christopher's (Janet and Andre's son) "actual" Birthday! Jed can't attend his party on Saturday; so today we had a very special day with Jed and Christopher having BEN10 cupcakes, presents (for Christopher) and a special party just for Jed to celebrate with his friend. Very special! Christopher ran and washed his hands before hugging Jed hello. He said "Hi Jed, I had to wash my germs off so they don't jump on you!"

On the way home from Christopher's house today, I removed Jed's buf (his little red scraf that he wears to protect his head from the sun) and I noticed with shock that his hair had fullen out on the cerebellar (back of the head). I was so taken back, it happened some time during the day. Jed's hair is very short but we cut it like that as you can't wash it during the radiation. The two spots are bold bold bold. It makes it so much more real.....

Some better news, is my dad phoned me today, he hasn't spoken to me since he heard that Jed has cancer.


Dad: "hey my little bird (me)"
Me: "Hey dad"
Dad: "your mom and anne made me phone, so hello, I love you"
Me: "I know dad"
Dad: "Bird, I love Jed too"
Me: "I know dad, I know"
Dad: "So the doctors say it isn't good, so now I pray Bird, bye"
Me: "Thank you, I love you daddy, bye"

Honestly I've left nothing out!

Now, for anyone who knows my dad, the fact that he called is amazing, but the fact that he said he would pray is even more odd. You see, my dad doesn't believe, he has like zero faith, and I think he may just pray! I found the call to be very special. I adore my dad, and I have no doubt that the only reason he can't speak to me is because he loves me, and hates to see me hurting.

I have attached the DNA report for everyone to see, and please comment on it (if you have heard of this machine). Thanks to DHL for the overnight super fast delivery. The Quantronics machine is what the other child with a similar tumor to Jed used and his parents believe it put him into remission. It is like the Rife machine, only you don't need to hold it. I welcome any input. I did phone the man Juan and I discussed the treatment plan and he also advised that we could hire the machine afterwards (after chemo) for R1500 a month (including service fees) - now we pray that this is an answer to prayers!

Today, I attached a picture of Jed and I just hanging out!

Love, hugs and thanks for your prayers
Bon and Jed x x x x

Fasting for Jed, Jordi and others!

Hi all,

Jed was sick as we arrived at radiation today, he vomited 5 or 6 times before the treatment even started. In the vomit was the yogurt that took me an hour to get him to eat, major annoyed to see it in the yukkie stuff!!! Radiation went very well today and he was a little angel.

Jed's eating is a concern, he is eating very little but seems to be drinking okay. I have been giving him a milk supplement but during chemo we are told to monitor the amount of vitamins he gets. He has gone off some of his favorite things, yogi sip and peanut butter!

We had a good weekend at the gwans (Soccer and Funny) and Jed was delighted to see a parcel arrive all the way from Australia. Thank you so much Rodger and Carol (my precious Uncle and his lovely girlfriend!). Thanks to the gwans for spoiling him with love, attention and toys!

Dad (Ray) did the shave thing for his son!! Attached is a picture! How cute they look!

Tomorrow my family and church members will be fasting for Jed and Jordi. It will be a 6am to 6pm fast (you can drink), please feel free to join us or give up something for the day, anything that will remind you to stop and pray for these two precious boys and anyone else who may need the Lord's healing (my brother Larry (brain injury/depression), Soccer Gran (cancer), Funny Gran (tiny winy strokes), Cindy (cancer) and Uncle Bob (cancer).)

With lots of love and hugs
Bon x

Jed had a wonderful day, thanks to his old PMB toys arriving!!! x x x

Hi all,

Jed's radiation went a little better today. They slit the mask to allow for his brain swelling so it wasn't as tight. Jed is starting to feel a little more sleepy now. He slept really late this morning and only woke up at 09h15. He is his precious, lovely and gentle self today and we have had a wonderful day, playing TV games, building puzzles and playing with all his old "PMB" toys that were delivered to the house. He was delighted to see his ninja naddies! (Ninja Turtles!)

The oncologist reassured me today that he is doing all he can for Jed, he did say that the chemo is not used on children and we can only hope that the outcome is positive. They work out the dosage based on weight and this is how they determined how much to give Jed. He also said that I can give Jed pain med's if he is sore but the pain seems more from the tightness of the mask than a headache as such. I will just monitor him. He has an appointment to see Dr Klass for Blood tests tomorrow. His dad, Ray, will take him, I just don't have the strength to watch him fight it, his veins are very bad and it can take 3 or 4 attempts to get the required amount of blood. Considering my current state of mind, I know I just couldn't face it. We have radiation in the afternoon (please pray that he is good, Mandy has a day's leave!!!). I have also made the appointment to see the counsellor for myself and for Jed. We will start with play therapy on Monday. This is to determine how Jed is coping emotionally with the treatment and all the changes that are going on around him. I will then see her alone, she did mention that she believes I am in denial on how serious Jed's condition is and that I need to realise it is not skin cancer, IT IS BRAIN CANCER. I need to explain to her that if by some chance I wake up one morning and do realise it, I'm going to be finished. She just needs to leave me in "la la" land for now!

Jed loved his rugby ball, but I think he would have been happier with Mandy's signature. But thanks anyhow Percy!

I have received some mail from people I don't know that have heard about Jed and they have mentioned that they are praying for him as they received a mail sent on from a friend or family member. I thank you for this, as before God we stand in numbers and pray for complete healing of this precious child.

Attached picture shows how cute his funky new head gear is! He is totally cool!

Please also remember Jordi in your prayers and his mommy Michelle!

With love

Update on Jed

Hello my friends and family,

Jed had another hard session of radiation, he has swelling on the brain and this is caused from the radiation. The process is not painful but the mask is now VERY VERY tight and this hurts his precious little face. I have made an urgent appointment to see his oncologist to discuss the option of cortisone to control the swelling. I have also made a pediatrician appointment (Dr Klass) for blood tests and to discuss pain relief. I will also see Janet Poole at the JHB General hospital to discuss the status and her views on the swelling. I may also put my pride in my pocket and see Kotzen. I knew that this was a possibility and I am sure the doctors will ensure that it is controlled.

DHL came to collect the DNA samples, photos, MRI reports to send to the team in Klerksdorp for evaluation. Thank you Norms! Erich is still in remission and this is the child that had the same tumor as Jed. I re-read Jed's MRI report and got all emotional I just believe that the UGLY thing has 3 nods now. One of the nods is 2.7 cm at time of MRI - let us pray that the BEN10 lights have sorted his UGLY nod head out!

Kirst, Penny, Fay and Christine THANK YOU so so so so much for the bribes, it has become very difficult for me to go to the shops so I can't tell you how much I appreciate it. The BEN 10 walky talky, alien fizz ball and watch attachments are very cool! Tommorrow's bribe is actually very special it is a 2007 Rugby ball signed by the springbok team - Percy Montgomery wrote a very special note to Jed "To a very special champ Jed, from YOUR NUMBER ONE FAN, Percy!" The marketing team of Ster Kinekor sent it! Very special.

I have attached a picture of Jordi and Jed. Jed had a wonderful day playing with Jordi, and they actually had a little swim (do not tell the boring medical team!!!) We made sure that Jed did not wet his head (that was added to prevent my mom from having another stroke!). Although Jordi can't walk he is moving those little legs in the pool and this means that there is hope!

Please pray for Jordi's beautiful mom Michelle as Jordi's radiation started today and he had to be put under GA for the process. Also pray for healing for precious Jordan!

Please pray the swelling is controlled and for Jed to be pain free! Please continue to pray for strength for me, I have had a very difficult few days, and although I try very hard to control my emotions and ensure I remain positive for Jed, at times I am breaking down in front of him and as you know this is not good for him, I am his strength and he needs a super strong mama!

With love and hugs
Bon and Jed x x

mmmmm walking through fire 24/7

Hi all,

Jed's radiation didn't go well today and we both landed up crying. I really felt like running away today... It took over an hour to calm him and the waiting room was full of people waiting to go in for their treatment. Jed did not want to co-operate and was complaining that his head was sore. I'm not actually sure if it did hurt or he was just delaying the process.

His temper is also getting really out of control. He seems to shout and scream all day long, it is very frustrating as I have been spoilt for the last 4 years with a sweet, gentle and very calm little guy. He has always been full of energy and a little mmm naughty but now he seems aggressive and I am not coping very well with the constant outbursts. I am going to see the counsellor early next week as I need to start play therapy with him. He made a comment on the way to radiation which I believe might have set us both off.

Jed: "mama I'm sick"
Mom: "no you are not, we go for scanning (radiation) to kill the ballies (tumor) in your head"
Jed: "and then they will pick (operate) me again"
Mom: "no baby, dad and mom said no more picking so that is why we do scanning now"
Jed: "thank you mama, will the Ben 10 lights kill the ballies mom"
Mom: "yes baby, yes they will"

Then I thought about how dam unfair this all was, 2 9 hour operations, chemo, radiation, headaches, frustration, it just seems just too much for a little beautiful boy to deal with. I sometimes can't understand why this has happened and I look for reasons all the time. Jed is my whole world, he is my sunrise and my sunset, he sleeps on my pillow every night and if I can't feel his little feet kick my ribs throughout the night I can't sleep! Why would this happen to my baby! This is how I am feeling today and although I s try sound positive, today isn't a good day for me and I'm sharing this with you coz I believe that I too need some prayers! I can deal with the fact that I don't have my little home, my veggie garden, my job, my friends (living in isolation), my precious boyfriend whom I miss all the time but what I can't deal with and will never be able to handle is the thought that these ballies are not being killed by the Ben10 lights! God Please!

With love
PS: Jordan will start radiation tomorrow, please include Michelle and Jordi in your prayers!

Prayers for Jordan and Jed! x x x

1st March 2009

Hi all,

Firstly, my mom is back home, it was a mild stroke from stress and uncontrolled diabetes (brat!).

The trip to PMB was over so quickly. I arrived at 19h00 on Friday night and I was back in Jhb by 15h00 on Saturday. Thank you to my precious friends Penny, Fay, Debbi and Nelly for being there is help me pack, wipe my tears and say a beautiful prayer before I left. I was so scared going down and your support got me through, never mind Fay who never allowed me to dwell on my misery - it was all work, work, work so that I could get back to my darling boy. I love you guys and thank you so much for the gorgeous presents for Jed! Thanks Christine for the great Ben10 walky talky!

Jed has been great all weekend, his dad did a fantastic job with the chemo on Friday, he did so well that dad is now "in charge" of all chemo!!! Well done dad!

I went into the chemist the other day to get myself some vitamins and Ensure... and the ladies in the chemist commented on how awful I looked, "oooo so skinny, and such big dark circles under your eyes, what on earth is going on...bla bla bla bla" anyhow I explained the story about Jed and what was going on and after some tears and hugs I left.

On the way down to PMB I got a call from a mom called Michelle who got my name from the ladies in the chemist. She started the conversation by explaining that she has a little boy aged 4, Jordan who has cancer on his spine. He has had 3 rounds of chemo and a major operation which has left him unable to walk. He too has a VERY rare tumor and it is also in nods, which means he needs radiation. Michelle was told that Jordan will need to go under general anesthetic each time he has his radiation (same was told to me!!!). I have encouraged Michelle NOT to allow the doctors to do the GA until she has tried the method I use with Jed. Michelle is hopefully going to come to the radiation session with us on Monday to see if Jordan will be able to cope without the GA. What a God send Michelle has been, I sobbed on the phone with her and it was so "nice" to be able to share my fears and speak so openly with someone I know without a doubt understands what I am going through. Please add Jordan to your prayers. I am looking forward to meeting him. Until November 2008 Jordan was a normal healthy 4 year old boy, now he is on chemo and can't walk. Life is sometimes a little too harsh for us to understand. I thank God that Jed has regained the use of his leg and arm post surgery, sometimes I forget how good God has already been..... Thank you Jesus that our Jed is still able to kick his ball and run around driving me crazy.

Please remember Jordan and Jed in your prayers, may God also give Michelle the strength to walk this difficult road.

With love
Bon and Jed

With love from Bon and Jed

Hi everyone,

Today was hard... but let me start with the good. Jed woke up and came thru to the bathroom - there I was trying to make an effort to look human... lipstick in hand and brushing my hair. I then walked to the room to get dressed. When I got back to the bathroom, Jed was covered in my make-up so I ask him what he is doing... and he says "mama I want to be bootifull for that scanner lady" (Mandy!)

The blood test was so difficult, Dr Klass could not find a good vein so after 2 attempts and allot of kicking, screaming and biting he managed to get the required amount for the tests. It took 4 of us to hold Jed down... now that is what I call a fighter. After the tests were done, I wiped my tears and went up to pay Dr Klass. As I walked in to hand over the money (R525) he looked at me and said "Bonni this one is on me, just please I'll see you next week".... Dr Klass looked exhausted. What a kind man, I just can't believe how special he is. I love the fact that I can see when he is holding Jed to take his blood; it looks like it is actually hurting him more than Jed. You don't get many doctors like him anymore. We are blessed to have him! The blood test results came back all fine, the white blood cell count is still very good.... let's hope it stays that way! Chemo fights the blood cells....

After that we were off for radiation treatment and to see MANDY!!!! Jed was delighted to see her. While Jed and Mandy chatted; I met with the Reach for a Dream lady. The first thing I asked her is why she decided to come meet with Jed, and her answer made me sick to my tummy, I almost vomited .... she said "I see all terminal kids in this area and the very very sick ones to make their dreams come true"... after that all I heard was bla bla bla bla bla bla.... I actually didn't hear anything else she said... I kind of blurred the meeting out.... I guess she realised that, coz she later asked the radiation team if they could think of what Jed would like... Mandy suggested any Ben10 toys or anything a 4 year would like, spiderman etc..... She left a teddy that said Reach for a Dream... for whatever reason I hate that stupid teddy!

Chemo went okay, one of the pills started to melt before Jed could swollow it and I had a total panick attack but I literally poured the juice into his throat. His sores on his mouth are almost clear which is wonderful. The only issue I guess now is Jed's aggression which is so dam difficult to handle... he is so moody and he shouts, screams, fights and throws himself around. This is so different from his normal loving and sweet nature. I asked the doctor about it and all he said was, "radiation chemo brain cancer Bon... I'm sorry!"

My mom is still in hospital (but feeling so much better), my brother seems to have made a break through in one of his sessions today so a special thank you for keeping them in your prayers.

I'm off to PMB (my favorite place) to collect some of my personal goodies and Jed's toys. I will leave after chemo on Friday and be back on Saturday before chemo (no radiation on the weekend). I'm nervous to be away from Jed and I'm also nervous to see my gorgeous little home and know that I will not go back there. My home is really stunning, a little cottage in the forest with the cutest monkeys that play on the roof. My veggie garden will properly reflect my mood after being left all alone for so long. My ex PMB team are meeting me at my home to help with the packing. Thanks my special friends!

Have a blessed weekend and please keep my baby boy in your thoughts and prayers as always. Your love has now become my strength so no pressure!

Bon and Jed.

Jed and Mandy.... is it love!

Hi my precious friends and family,

Well I've just heard the news that my mom has been rushed to hospital. I knew that with my brother very ill in hospital (clinic) and the news of Jed's brain cancer that it would take it's toll on her. I'm not sure how she is (I have a feeling it is being down played to me!) and I ask only for your prayers. Boy when the wheels fall off they really do! My mom's name is Jean and my brother is Larry.

Jed had a good radiation session today and was a brave "still" soldier. and.....He has also found LOVE.... he has developed the biggest crush on one of the radiation ladies. Mandy! His whole face lights up when he sees her and this morning he said "mama I must be extra smart to see my Mandy lady by scanning today"... I actually only clicked when we arrived that this was in fact true love, he ran up to her and gave her the biggest hug and kiss - smack on her lips. She actually is very pretty and I will try take a picture of her for you.

At the pharmacy today, I was explaining to Jed that he couldn't eat his chips with his dirty little fingers coz he is having very strong scanning (aka chemo and radiation) and that the germs might sneak into his body. I didn't realise that the women behind me was listening but I heard her sniff. I looked up and immediately apologised for upsetting her (if I was the cause). She just smiled and said, "no i'm sorry, you see I also had a daughter once and she was just as gorgeous as your son!" I was shocked and just said "oh I'm so sorry, what happened" and she replied that her daughter also had cancer (Jed looks like a chemo kid now - the hair is a give away and the monster red mark on his cerebellar), she was diagnosed at 5 months with kidney tumors and died just before her 2nd birthday. This ladies daughter would have been 27 this year. I then asked the most stupid question - it just blurted out - I said "WHY DID YOU KEEP LIVING?" and she replied between tears "my darling, I don't know and I ask myself that all the time".... what an honest answer... she then said "but your son will be fine, I have faith". She said it with such conviction, if the doctors spoke like her I think I may stop my nagging researching all the time!.... I wish I'd gotten her name, this beautiful 50 something person but what I did get... is a hug and allot of positive energy!

Jed is still having nausea in the mornings and evenings but the nausea is almost instantly relieved with the new medication. Amen! Tomorrow is a big day for a few reasons, Jed gets to see MANDY at radiation (I'll be sure to make him look extra sexy); we have blood tests, which will determine how his count is looking; and we get to meet the team from REACH FOR A DREAM, they heard about Jed and have set up a meeting with us. They said I need to think of his dream... well his dream is to be big like his dad!

(nagging research time....) There is a child which we have located from "moments, 2009 cancer calendar" with a MYXOID TUMOR (the same cancer as Jed) and this child is in remission and is in Pretoria. The medical team work out of klerksdorp and the treatment they used is very new and sounds like a machine that you plug in at night and it sends out some kind of rador signal and the dad believes this has stopped his son's cancer. His son also had chemo but they did not do radiation, they did 3 surgeries as opposed to us, who decided on radiation verses surgery. The machine can't be used whilst you are on chemo and the technology is very very new. But the man in klerksdorp has asked me to send Jed's latest MRI, some hair (mmmmm) and nail samples, the pathology reports, and a photo of his eye. This is going to used to determine some kind of DNA analysis and to determine if the machine will work. Yes yes yes yes, it sounds odd.... I have not gone crazy but the reality is HIS SON IS IN REMISSION - he has quarterly MRI scans done and his child is doing very very well. I'm busy getting the goodies together and I'm hoping to post it off to the medical team tomorrow. I can just see my doctors face when I inform him of this technology - but I will NOT GIVE UP! Again, I thank my darling sister Lulu (Shelly) for locating this child and for stalking his parents until they replied. Lulu, your love for Jed and I has been so amazing - I love you so much for your determination!

Today's prayer request is for Jed, my mom, brother, hell include my dad who hasn't stopped drinking since the news of Jed, and that Mandy is prepared to wait for Jed until he is 21.....! (Mandy is about 20 now)...

With lots of love and appreciation to each of you.

Today's picture was taken with his new cool hat to protect his head from the sun (radiation = no sun shine!)

God Bless!
Bon and Jed

Pilchards can make you feel like a winner!

Hi all,

I'll start my e-mail with a little light hearted story. Jed and I went into OK (the shop) to get a few things before radiation today, anyhow we spent over R150 so we got to pop a balloon (some or other promotion). I put Jed on the counter and he popped the balloon and inside was a little note that said we had won a prize. He was delighted and started shouting and running around saying "yippee yippee i'm da winner". Anyhow, his prize was Lucky star Pilchards (hot chilli) a small tin. Anyhow when we arrived at radiation I had to go back to the car and show everyone at radiation the tin of Lucky star Pilchards. Jed is so proud of the prize he won - I think he believes it is some kind of trophy. All the girls at radiaiton clapped for him and said that he was so clever for winning such a great prize. My clever boy! We have the tin on display in our lounge now!

Radiation went well - he lay very still, I have included a picture which shows him laying down and what the mask looks like. It is VERY tight and it actually holds his head in place while he is having the treatment done. It is so tight that afterwards you see the red marks on his face from how tight it is. He cried allot today and he really needed mom's hair and the HEAD!!!! But he did calm down. Today's bribe was a Jedi sword with lights - he loved it!

Jed hasn't had a good afternoon since the treatment and has been vomiting allot. I think the combination of radiation and chemo is starting to show the true signs. He was very "lazy" this evening and didn't wanna play much. He also has terrible mood swings and gets very cross for very silly reasons. My patience is really being tested, but lucky the love I feel for him is enough to endure the odd "eina" I get from his frustration. Some more good news, is that the sore in his mouth has popped and seems allot better today (it was starting to really worry me!).

Thank you again, for the beautiful messages I receive by mail and sms, please promise me that you are not forgetting Jed in your prayers.

And to my darling sister, thank you so much for the very smart juice machine you left at Sandton Oncology. This is going to save me hours of time and I can't wait to try it out. Sipho (aka Jed) and I will be making juice in the morning and I'm hoping this will be faster than my old machine which sometimes took an hour to make 200 mls.....(excluding clean up time) I love you Lulu, you are so special - Jed loves his Aunty Jelly!

Lots of love and hugs
Jed and Bon x x x

Making the most of time!

Hi guys,

Thank you to each of you for the special messages I received.

I'm having a bad day and I guess that is normal. Radiation went well today, Jed was so so so brave, he lay so still - i counted to him, 1 BEN TEN, 2 BEN TEN, 3 BEN TEN and he lay so still like a little angel. The radiation goes in 2 sessions - each session lasts just over a minute. It is a huge thing to lay still for a minute (and about 7 secs) when you are 4. But my brave 4 year old can do it. Today he got WOLF GUY from Ben 10 - he has 3 aliens in total now and the excitement on his face when he opens each alien is truly a blessing and worth every cent.

The chemo is yuk, I believe that is what is contributing to his mood swings (either that or my genes!) however, the nausea has improved and I say thank you to everyone who prayed for him after Friday night. Saturday and Sunday were both good nights.

I'm scared today and full of negative questions but I'm trying really hard to be strong for Jed. I was crying allot earlier and Jed asked me why and I said it was coz I miss watching BEN 10 (our DVD machine broke earlier) he totally understood my tears... and marched off! The reality is that we went to play at the jungle gym, and I watched all the other mommys "playing" with their kids, I was wondering if they were thinking of what is on the stove or about the next soapy... coz none of them looked all that interested in playing with their kids. I LOVE playing with Jed, it has always been the best part of my day, coming home and spending those quality hours kicking a ball or running around.... so how come if I enjoy it so much God is allowing my Jed to go through this.. yet these other mom's don't seem to like it as much. Such a selfish thought hey....???but one with a message, enjoy playing with your kids.... trust me, I was one of the people who said, "shame that is so sad, and then thought, that "stuff" is awful but "knew" it happened to "other" people" Now i'm "other" people....

I'm also petrified about chemo on top of radiation - I look back to Friday night and I'm so nervous to re-live another night of vomiting, sweating and his little body shaking. Saturday and Sunday the chemo went well but then again, there was no radiation..... already on the way home today, he wasn't feeling great.

I missing my little home in PMB, with my veggie garden, i'm missing seeing people, i'm missing Jed playing with his friends and even missing my job.

Living in isolation is no fun..... and I believe it could be contributing to my ikki state of mind today, I keep busy - that way there is NO time to think, if I had to stop and think I would go crazy (crazier).... The cancer association phoned today and asked if they could send a lady to see me, and I was like ...mmm, okay, why, and the guy replied saying because she had breast cancer and she can relate to you.... I said nope, that if I had cancer, i'd be sad, but to watch your CHILD suffer is far far far far harder... i would trade places with Jed in a heart beat (even tried to barter with God on that one!) So the cancer association dude was very disappointed that he couldn't help. I guess no one could, unless they were going through the same thing... so I say, bring on the prayers coz really that is the ONLY support I need!

Love to all, and I promise to be more chirpy tomorrow! Please please continue to pray for Jed! Uncle Joe - your mail was beautiful!!!

Bon and Jed

2 days down and this was a brilliant one!

Hi guys,

Here is your update....

The radiation session was at 08h15 this morning - Jed was still zonky from the chill med's he was given the day before - he slept from 17h00 - straight through and was still all sleepy when I dressed him this morning....mmmmm this does not please me at all. So this morning I told the radiation team that I was NOT keen on the chill meds (Vallergan Forte) and I wanted to try the treatment without it. I spoke to Jed and explained that if he was good he could get "4 ARMS" the Ben 10 Alien (thanks once again Grans) and he was as good as gold. I spoke to him over the radio and watched him on the monitor - he did not move. I was so proud of him, in fact we went and bought a lazer gun aswell to celebrate his "goodness level". He slept in the car on the way home but is up watching Ben 10 now and full of beans.

The chemo medication has arrived and we start that later on today. Let us pray that it kills off the tumor bugs or tails or growth spuds whatever the horrid thing rather to itself as and that together with the radiation we MURDER the tumor! Amen to that!

Other than that, Jed is looking very sexy with his little shaved head, a picture attached!

For those of you who have asked some questions let me answer in one mail,

YES financially we are fine! Jed and I have moved in with Ray here in Jo'burg (Germiston).
Jed is on Ray's medical aid
Yes, I have resigned from work, DHL has been wonderful and so very supportive, I was blessed to have an awesome boss!
No, I will not be going back to PMB - only to collect some odds and ends but I will sell off my goodies there.
and lastly, please I will ask for counselling if I need it, I have a shrink giving me some light anti depressants - mild dose, I have the worlds most wonderful pastor, I communicate with other moms on the web and have joined a site called TUMOR's SUCK and I chat to other people there. That is fine for me. I also see a social worker at the radiation clinic and trust me, they are watching me. All i need is the love and support I have received thus far, when I feel I can't cope - you, my friends and family will be the first to know, you have my word! I'm very strong at the moment and I believe this is due to your prayers and OUR positive belief that NOTHING including some ugly tumor will take away my baby boy!

So on that note, have a wonderful day and chat soon.

Again, I thank you for your prayers and continued support!

Lots of love
Bonni and Jed x x x

Jed's radiation (1 down - 29 to go....)

19 February 2009

Hi all,

This is gonna be a quick mail as I'm emotionally drained. Once again, I would like to thank you all so much for your beautiful messages of encouragement and hope. Please keep them coming, I have always been such a "closed" person and the love I have been shown during this very difficult time has shown me that people are really beautiful and that you care! It is so special and overwhelming.

Jed was very brave today for his first radiation treatment, in fact he did so much better than his mommy. Before we went in, I grabbed a pair of sissors and I cut my hair as it has always been his comfort and handed it to him on the radiation bed before it started and he looked at me from under the bright yellow mask and said "mama I need your head with the hair" - so my great plan failed! His little tears filled up the mask and he fought the process. The Ben 10 watch was the only way to keep him still, I promised that he could open it as soon as the "scanner treatment" was finished!!! He finally calmed down and the radiation took place. The whole thing must have taken 5 mins but the prep took well over an hour. I spoke to him on the radio through the treatment and I could see his tiny little body laying on the table with the monitor. Kind of felt like I was watching a bad home movie; I actually got a fright when I realised the bad movie was my life and the star was my baby boy!

I remain positive and have had some communication from the states regarding chemo that is working on some of the patients over there. I have forwared the info to my medical team, whom I think I irritate with my nagging .... however, my nagging will continue !!!

Jed is sleeping peacefully now and is still a little drugged - I gave me something to calm him, it actually only worked when we arrived home!

Mom (Funny Gwan), Thelma (Flower aka Soccer Granny) thank you both for the wonderful Ben10 presents, they should keep us going for a few more treatments but mostly thank you for your strength and love. - one down 29 to go! Mom i'm so proud of you, whilst both your children are going through a hectic time, you remain our rock (a bit wobbly but a rock none the less!)

The rest of my family and dear friends, I ask only that you keep praying for Jed and ask God to give us the strength we need to support Jed!

Lots of love

So chemo really sucks!

Last night was hectic. The chemo pills popped down little Jed far easier than I thought. I was really worried about my tiny man swallowing 5 large pills but he did it with ease. We finally got him to sleep at about 21h00.

At midnight I woke up with such a fright and then about 2 seconds later Jed started to vomit. There in the vomit was the mac and cheese and the fresh juice I had bribed him to eat and drink. He vomited none stop for about 2 hours - his little body was shaking and hot. He was sweating. Ray and I sat with him talking and trying to keep him calm. If I gave him a sip of water - blast - the water came out... nothing seemed to stay down. Thanks VALOID!!!! Then for another 2 hours his body lay heaving and he was grinding his teeth.... I asked him if he was okay and he said "mom you know i'm sick" so I say "yes my love I can see that and mom's here with you" and he says "well mom, I'm only sick coz I need my lazer gun that is in dad's car, if you get the gun I will be better".... so at least I finally know the cause of the brain cancer - the dam lazer gun!!!!

We had no choice but to rush Jed to hospital this morning and I knew the whole ride there that the chances of yet another overnight stay was inevitable.... but I prayed and begged the nurses not to admit us... I got him to hold 100mls of apple juice and a slice of bread before the doctor arrived. He said if I managed to keep him hydrated I could keep him at home. 600mls every 6 hours. He also changed the medication for nausea to Zofran Zydis 4mg every 8 hours (more dam pills) so i'm hoping this will stop the vomiting. I need that homemade juice in my little dude's tummy!

Jed is doing okay today, he is allot calmer than his normal busy self but he is doing well considering. Last night I lay thinking (or going mad), each time he vomits the "weed killer" (my new name for chemo) is killing the cancer cells and that inside each little vomit is tiny little bits of tumor growths, so tiny you can't see them with the naked eye! The chemo is slowly killing them - behind the "weed killer" is the power of our prayers and the strength of Lord - watch out cancer - you are in for the fight of your life and we are looking forward to seeing you die! Yebo!

I'm off to watch Ben10 again and enjoy some time with Jed. Allot of people have asked if they can send Jed a toy or a present... you are more than welcome to get him a present or even better take the money and put it in the collection box at church or buy something from some cancer organisation.... but if you really want to get Jed a toy please feel free to do so. You can drop it at Morningside oncology - we go there for radiation every single day (next to Mcdonald's in Rivonia road) - Just say it is a present for Jed - they all know him there or give the present to Andre B in I.T at DHL - I'm very good friends with his wife Janet and she will ensure the present gets to Jed. But, honestly, all Jed needs is your prayers.... We don't invite people around or go out coz if you thought I was paranoid before - YOU HAVE NO IDEA HOW BAD I AM NOW!!!! But the reality is that Jed doesn't have the immune system (at the moment) to fight off daily germs so we stay home, build puzzles, watch Ben 10 and play indoor soccer.

I ask again that we don't stop praying for Jed's recovery.
Lots of love

Chemo on hold - PRAYERS NEEDED

23rd March 2009

Hi everyone,

I have received a few sms messages to ask about Jed's treatment going forward. I have already updated my precious friend Jo Goodman so I'm not sure you may already know this but here is a mail for my family and everyone else.

The doctors have put Jed's chemo on hold. His blood platelets are too low for the treatment to be continued. This is not uncommon I am told. He is doing okay considering, he is very sleepy and has little red/purple spots on his legs (I think he is scratching himself) and he says he is itchy. I see Professor Janet Poole at the JHB Gen on Wednesday for blood tests. Jed has no veins in his hands and arms left (at the moment) that can be used so they will do a finger prick test on Wednesday and if the blood count is up we will immediately continue with the chemo, if not, the transfusion might happen or we will wait a few more days. The radiation continues... It is the chemo making him ill and not the radiation (I'm told!)

Tomorrow we start a booster radiation session for the last 7 sessions. We have the 2 sessions (as normal) and then the booster. The booster is at 104% (of whatever) and it aims at the tumour nods so we need to pray extra hard that the BEN10 lights hit the tumours and kick them right out of his brain. And stick a NO ENTRY SIGN on his cerebellar and entire body!

Considering Jed's current blood results, he did manage to eat half a slice of bread today with marmite, a small jar of baby purity and drink 2 bottles of Pedisure (this is a brilliant eating day!!) and his tummy worked (yes yes yes)! Trust me I love the sight of his pooh lately! His tummy get very bloated and sore if it doesn't work (also the chemo)

I have been contacted about some more treatment methods, Riekie (not sure of the spelling and I've never even heard of it), a special mat (R2800 a month) that relieves pain and repairs cells after chemo (i need to read up on this one but Jordi's mom seems positive about it) and then I have decided to see a homeopath. Jordi's mom has got some nausea medication that is really working for Jordi and it is homeopathic. And yes, I will check it out with the doctors first but at this stage I'm willing to try anything!

Attached is a picture of our precious Jed sleeping in his new car chair (just look at that head support!)

Thank you for your love and support. Today I received some mails that really touched my heart, you all have restored my faith in the human race! I love each and every one of you.

Love from
Bon, Ray and Jed x x x