Today's update

17th June 2010

Hi there,

I have just called Linksfield to confirm that post surgery Jed will be in isolation and have a dedicated sister looking after him. Dr Klass (pediatrician at Linksfield he actually dx Jed back in August 2008) has confirmed that they have staff issues due to the soccer but will ensure that Jed is given priority. He said he and Dr Weinberg discussed once again the risks of the surgery and from then on I heard bla bla high risk bla bla due to radiation healing is a huge problem bla bla bla....... as long as my son is pain free and I want to see his smile asap, the rest is just talk at this stage!!!

Today Jed is still mobile, he is falling like a drunken boy but he is still determined to move around and be independent. He has fallen three times pretty badly and I think he may have cracked his nose as it is swollen and blue.... but he is not complaining of pain at all. His best friend Thami (see photo) is staying with us and they are laughing playing games and enjoying normal things boys do. So neurologically Jed is "okay"..... the nausea is controlled with the very high doses of steriods - I am yet to see the steroid rage come out. Although he is very emotional - crying about silly little things like the TV on the wrong channel or his bottie not warm enough so the steroids are kicking in as Jed is normally so sweet.

I got busy and organised today. Got Jed's new bedding for the hospital and goodies to decorate his room - I'm going Toy Story 3 as it seems to be very "in" at the moment. I have got him a duvet, pillow, carpet and a few dvds for the hopital. I got him sheep skin from Michelle and special creams to prevent bed sores. I have meds for tummy issues related to high doses of pain medication. I have clear liquids and new bottles - I got zip up tops as nothing will be able to go over his head (already there is swelling). I have purity and liquid food supplements, nappies as he won't be able to move and bed sheets and wipes.... please let me know if I have forgotten anything. Feeling organised makes me feel in control and with cancer u have NO control so this obsession is therapeutic at this stage. I'm sterilizing the bedding and hospital clothes now and will pack them up tomorrow - "keep on swimming, keep on swimming, keep on swimming!!"

Gillian Declan's (he sadly passed away from cancer) mom dropped off some cooked meals which was a wonderful and welcomed surprise, as you all know I just HATE cooking so starving to death would suit me right now... Ray has already lost 12 kgs with all this cancer stress and I guess I found half of the 12kgs which is great as eating seems like a huge mission (I have room to starve a bit) but yes, we are keeping up our strength.

Please pray, I'm isolating myself more and more I guess this is selfish but I just know that if I speak on the phone it may just push me over the edge which I'm currently leaning over - toes already gribbing the sides... today Alida phoned and it took so much strength not to cry that I think I landed up sounding rude, sick and mad.... so let's stick to mails.... but thank you for the beautiful messages of strength and love at this putrid time!

Love
Bonni Jed's mommy

Jed's Reality

15th June 2010

Hi there,

The update so that my phone silences...

Dr Reynders told us that we have days with Jed - the cancer is very aggressive and almost at full size. My baby is suddenly weak, he can't really walk and the pain is setting in... but he is playing in true Jed style.....

Our time with him is precious so I will not be taking calls to chat and repeat myself.

We are seeing a surgeon to discuss the possibility of taking the tumor out to relieve the pressure to avoid pain for Jed. He is reluctant to operate as the
wall around the tumor is hard due to the two previous operations in the same location. South Africa has a proton radiation and if I find it this will also make Jeddy be more comfortable during this time. Please feel free to donate to this if you feel you would like to.....

We do not want new visitors at this time as we don't want to entertain anyone and to be honest this is our family time. I will do all I can to ensure Jed does not suffer and that if this is God's will then I pray he directs us and gives us the medication required.

How am I???? Well I broken to the core - there are honestly no words to describe this pain - death for me would be a pleasant and welcome experience. I picture not seeing Jed in his school uniform and never seeing that little tooth growing in his mouth - I think of sleeping without him in my arms and I know that I couldn't do it.... so on the how am I... I am currently strong for my son whilst shattered as NOW this is about Jed and not me.... or Ray or his precious Gwannies..... we all need to be strong for MY SON. My precious beautiful wonderful son!

Jed's bank account details to assist with care during this time.

First National BankAccount No: 62218655184Branch: GreenstoneBranch code: 201510Acc Name: Jed SucklingReference: Your name or if you prefer anonymousSwift Code: FirNZAJJA 188

Bonni - always Jed's mom

Vusi died yesterday

Hello everyone,

Our little Vus Vus puppy died yesterday. He was barking at the maid and I hit the bed and shouted "Vusi stop barking" he got a fright fell off the bed, hit his tiny head on the corner of the set of draws, broke his neck and was dead on landing. We rushed him to vet and I insisted they do everything to try bring my little puppy back, but it was too late......

Vusi was not just a dog, he was the little boy who at 3am when "suicide hour" hit would lick my tears and cuddle up to me. He was my replacement of the lack of affection, he'd keep me warm and he was my little comforter. When Jed would go for treatment I'd say "we gotta get this done coz little Vus Vus is waiting". Jed would rush through it so we could get home to our doggie.

My heart is broken into a million pieces. Losing Vus just highlighted once again how in an instant your world can change. - If I never shouted to him to stop barking he may not have fallen off the bed.... if . ... if ... if....

On the way to the vet I was crying and driving very fast. Jed said... "mom don't drive fast, Vus Vus is already with Jesus, Jesus told me... there is a special heaven where doggies go, and mom Vus is okay so stop crying" - my son shocks me....

The clocks ticking is louder and the silence is hurting my ears.... I miss my little doggie and I feel extra lonely now....

Ray has already said that he does not want another dog in the flat but it doesn't matter cos Vus is irreplaceable.

In Nemo-The Movie-Dori sings to Nemo when he is scared of the dark "just keep swimming, just keep swimming, just keep swimming" and when times are hard I sing it too... but right now the current seems too strong...... with my puppy gone..

Please pray for us.

Love Bon and Jed

Update and Rainbows and Smiles

25th Mat 2010

Hi everyone,

......sorry for being so quiet but I have been enjoying the normal things that most of us take for granted. Jed and I have been going to play games (video arcade games), watching movies and living it up. It has been the most amazing time, Jed is eating so much better and his weight is at 22.8kgs this morning (and to think in September it was 16kgs)

We had a wonderful fund raiser to raise funds for Jed and Jordi. A special heartfelt thank you to everyone who came along and supported the boys. The evening was a huge success. We managed to raise just enough for the MRI scan which is a huge relief. Pat - thanks for all your hard work. I don't have any photos so if any of you took photos please send them to me. Jed's next MRI is on the 21st of June 2010 so please keep praying... Our pray is NED - NO EVIDENCE OF DISEASE - God can do this!

Jed is still going for Occupational therapy and he is showing some improvements with his fine motor skills. He is still having a hard time writing and doing some tasks as his hands still shake. The shake is caused by the damage from surgery and/or radiation. He calls it his wiggle - the wiggle has hampered his writing but not stopped him. He is now writing his name clearly and has mastered writing up to number 4. I am still home schooling him for 3 hours at day and he continues to amaze me with his intelligence (mmmm wonder where he gets it).

At the last blood test, we found out that Jed is Vit D deficient - so I am supplementing him, as I have read some interesting facts on Vit D working to help slow down or stop cancer cells. The last blood test showed his count was 24 and my aim is to get it up to 60 - 80. On Thursday we will do a full blood count to check sodium levels, liver function and Vit D. Thursday I will be taking him in for his port flush and to DELIVER GIFTS TO THE CHILDREN IN OUR ONCOLOGY WARD!!!!!!

My charity Rainbows and Smiles is now legal and with the help of my dear friend Dawn Van Vuuren from local magazine we are doing our first awareness day on Saturday. The sole purpose of this charity is to bring joy to children with cancer and create awareness. Membership to the organisation costs nothing and all members are open to all information and details regarding the organisation. Basically you join, you get e-mails and photo's of kids with cancer receiving a gift... simple..... As membership grows so does awareness for childhood cancer! Please see attached invite for Saturday! Rainbows and Smiles constitution is available for anyone to read, review and comment on. This is my way of "paying it forward......"


I thank you all for the continued love, prayers and support.

Love Bonni
Founder of Rainbows and Smiles
BUT MOST IMPORTANTLY PROUDLY JED'S MOMMY

Brain cancer awareness month

5th May 2010

Today is May 1st, and it is officially Brain Tumor Awareness Month.In 2000, more than 26,000 children in the US were living with a brain tumorEach year 3,400 new cases are diagnosed.Every day 9 children in just the US are diagnosed with a brain tumorBrain tumors are the leading cause of cancer death from childhood cancer, accounting for 24 percent of cancer-related deaths in 1997 among persons up to 19.76 percent of children diagnosed with a brain tumor are younger than 15.There are more than 120 different types of brain tumors, making effective treatment very complicated.Pediatric brain tumors are different from those in adults and are often treated differently.The combined five-year survival rates for childhood brain tumors has increased slowly, from 54 percent to approximately 60 percent.However, for some pediatric brain tumors (e.g., brain stem gliomas, atypical teritoid/rhabdoid and glioblastoma multifome), long-term survival rates remain below 20 percent.Quality of life for survivors of pediatric brain tumors is influenced by the long-term side effects of treatments such as chemotherapy and radiation.Brain tumors are treated by surgery, radiation therapy and chemotherapy, used either individually or in combination.Less than 3% of all cancer funding is directed at the twelve major types of childhood cancer.Wear grey for Jed, spread the word and show us you careTogether we can help to find a cure TODAY
Jed appears with me in the video and earlier with Vusi...... Jordi does not have brain cancer but spinal cancer (in remission) appears in the video on his swing. Jordi's MRI is on Monday and surgery on Wednesday (please pray all goes well as he is having some cold/flu symptoms)

In God we Trust - BELIEVE!!!!

Enjoy the video

http://www.facebook.com/#!/video/video.php?v=1422698857503

Love Bon

Update on Chemo Protocol

19th April 2010

Hi everyone,

After an intense meeting with our oncologist we have decided to go onto the "watch and wait" period with MRI's every 2 months - for those who think this is too often I'd like to remind you that Jed's tumor grew aggressively after his 2nd surgery and it was at half way after 4 weeks. The medical aid have agreed to pay for the MRI scans every 4 months which means we will pay for every 2nd MRI - we are looking at about R13 000 - 15 000 per MRI (but I'm going to negotiate a cash upfront discount and plead my case). PLEASE ensure that you get your fund raiser ticket - we are having the function on the 15th of May and there are still 50 odd tickets up for grabs - this fundraiser is for Jed and Jordan - Michelle has a self payment gap on her MRI's of about R9 000 per MRI so we are both kind of stressing so PLEASE attend our little function for these amazing dudes. We promise a night of fun, great prizes, gifts and entertainment at only R160 per ticket.

We have our last Vincristine push through on Sunday and then our watch and wait begins... already Jed's blood counts look like a normal child's results. I'm thinking over the next 2 months I am going to take him to the shops, to play golf, the park, to play with friends and enjoy his chemo break - I intend to enjoy my son as never before and I look forward to the most amazing quality time, fresh air and people - a blessing!

I would like to also suggest that the first week of May we make our prayer week - I will be mailing out a prayer each morning for a week, clear and specific requests regarding Jed's healing, if you don't want to receive the mail let me know, otherwise you are all gonna get it.

Thank you to everyone who has donated clothes to Rainbows and Smiles, Norms, Charls, Winny, Claire and Barbara (AGAIN). The charity is almost legal and I look forward to posting pictures of children receiving toys to make them SMILE!


Another thank you to Becks (my IKO's were rather difficult to meet this year so I thank you for the ongoing support) and my precious cousin Shirley - you both know why - I love and appreciate you so much!

In God we TRUST!!!

Love and hugs
Bon
Proudly Jed's mom (oh and Vus Vus)

Hypersensitive to Carboplatin

12th April 2010

Hi there,

A quick update from a very emotionally exhausted mom. Yesterday was week 49 of the Vincristine/Carbo protocol for Jed... over the last 3 sessions Jed has started to develop what I thought was an allergic reaction to chemo. After a long, lonely night of cleaning vomit, taking temps and research I now realise that Jed has rejected the Carboplatin (the chemo that is keeping him stable). I'm feeling extremely anxious as the next recommended protocol of Vinblastine has had no success on PMA brain cancer. I contacted 13 mom's through the night and they all confirmed my worst nightmare - with Vinbastine their children experienced growth.

Jed has hypersensitivity to Carbo which can be fatal. Once again, there was no doctor there during the IV transfusion and this was a request I'd made a week prior to coming in for the chemo. (but what the hell do I know?????) Thank God Elize was there and reacted very quickly. The doctor arrived about an hour into Jed's reaction. By this time Jed's heart rate was coming down from 164 and the oxygen (on 5) had brought his saturation up from 80 (thank you GOD for no collapsed lungs) - I'm angry, hurt and upset that once again I faced loosing my son to what I put down to a lack of knowledge and incompetence. I want to be Jed's mom and not his doctor!!!! The recommended protocol as no success so WHY recommend it!

I've e-mail America and I'm waiting to see what the next step will be, will we try Vinblastine and pray knowing each child is different, will we go onto no chemo watch and wait or will I sell my soul and take my son to America for treatment - this is the decisions Raymond and I we are faced with....

Please add me to your prayers as I honestly feel like I'm at breaking point. The ground has been kicked out from under me and I've got no where to turn and not one person medical person is giving me the hope and reassurrance i need so badly.


I'm not answering my phone as I'm simply too busy contacting doctors and getting as much information together as possible - I will not give up on my son!

Bonni