Tuesday, September 14, 2010

Latest MRI results

14th September 2010

Hi there,

Jed's MRI results are stable. Our last MRI was 20 July 2010 and there is no change since then. We pray that the surgeon got the entire tumor out and that the temodar (chemo) is working to mop up any left over cells.

The results still need to be reviewed by the neuro surgeon but according to the radiologists review my son's cancer is stable - thank you Lord God and thank you each person who has stood by us today and prayed with us.

Ray and I have discussed doing another scan in 2 months but will continue to take it day by day. The CSF leak was very evident on the scan and whilst it looks rather shocking on the image it is causing NO discomfort to Jed.

Jed's spine remains clear of any drop mets!!!! AMEN!

In God we Trust.

Thanking God for healing my baby.

Love and hugs


Jed's mommy

Friday, August 27, 2010

Jed's Pathology

27th August 2010

Hi everyone,

It has been a while since I updated with what has been going on...... the news isn't good.

Jed's pathology came back from the US that the tumor is now an AA3 (Anaplastic Astrocytoma grade 3 - high grade glioma). The original pathology may have been wrong or the tumour has morphed into a more aggressive grade because of the high doses of chemo and radiation. The worst news is there is no treatment plan for an AA3 as it does not respond to chemo. I've been to see Prof Janet Poole at the Johannesburg General Hospital to ask her if she has ever treated an AA3 patient and she has not and nor does she know of any "local" cases. What she did know about the tumour wasn't positive..... She referred me back to the US and I'm now researching and trying to locate doctors in the US that have some experience with this high grade tumour. Thank you once again to DHL for doing all the shipments free of charge and with urgency!

I want more for Jed's life..... more giggles, more smiles, more walks and adventures. I would give up anything I own to save my son! I dream of packing his school lunch box one day and doing his homework. I dream of his birthday parties and the friends he'll make. While you look at the watch today and wish the day away so you can leave your job, I ask that time stops..... pauses and that I can live in THIS moment forever! This cancer has robbed me of everything I have ever worked for and taken away the joys I once felt but it will not take away my faith as more and more I realise the only person that can save my little boy is God, so if you want to do something for a mother who is broken, pray!

Jed is doing well, the only issue being low platelets. He is happy and full of energy. There is morning vomiting but this is controlled with the zofran.

The attached picture was taken from our little break to Emerald - where we had an AWESOME time.....

Love you all and thank you

Bon x x x
Jeddy's mommy!

Wednesday, August 11, 2010

Update with Newspaper article

11th August 2010

Hi there,

Been a while since I updated my special Jed10 supporters.

Jed is doing well. He finished his first round of temador trial chemo on the 26th of July so we start the next round in 23 days time. He tolerated the chemo so well and even his blood results were outstanding (just below the normal ranges)

We sent all the tumor slides (samples of the "monster" removed in his latest surgery) to the US for them to review and confirm that they agree with the SA team's pathology. I have heard back from them; they do NOT agree that Jed has a Pilomyxoid Astrocytoma but it is some form of Astrocytoma. The chemo we are using at the moment is for all types of Astrocytomas and we are positive that the growth is an astrocytoma due to the star-shaped brain cells called astrocytes.

Jed's tumor changed from a Pilocystic Astrocytoma to a Pilomyxoid Astrocytoma from grade 1 to grade 3 - my understanding is that with chemo and radiation treatment the tumor's get more aggressive. I pray that this is not the case with our boy once again! I'm feeling confident with the team in the US. I believe they will come back to me with confirmation by early next week. Thank you to the DHL team who have ensured that the samples arrive safely. The lastest shipment left last night and contains all the tissue samples taken from Jed during all 3 his brain surgeries. See attached article published in our local newspaper.

The CSF leak is the same size maybe a little bigger than a few weeks ago but I am not overly concerned as Jed is doing well in his physical functioning which indicates no pressure on the brain.

My prayer requests

That the tissue samples arrive safely in the US
The US team confirm that the cancer is treatable and recommend a chemo treatment that is effective
and that by the mercy of God the surgeon removed the entire tumor - this remains our prayer!!! Jed is healed, Jed is healed, Jed is healed.....

Thank you to everyone for your messages of support and love, I often feel that some may be bored with the ongoing drama of my life so when I get a message, a mail or a letter my heart rejoices! This is the hardest experience of my life and I appreciate each one of you so much.

In God we Trust!

Love and hugs
Bon x

Wednesday, July 7, 2010

News on Jed

7th July 2010

Hi there,

We met with the oncologist on Tuesday and he has recommended Temador at 120mg - Jed was on this protocol in Feb 2009 but we stopped it due to low blood counts (platelets) therefore I will be nagging for platelet donors again soon. This is not an IV chemo but an oral. The side effects are less than the trail chemo and we will try this before going for the Avastin (which has very harsh side effects)

DHL have sent the pathology slides to the US for confirmation that the tumor is Pilomyxoid Astrocytoma - there are two doctors over there looking at Jed's protocol to ensure that we are on the right path with regards to treatment going forward.

Jed is doing amazing, his left side weakness is no longer evident AT ALL (thank you Lord) and he is running around like a normal little boy - the only time you would notice the surgery is if you saw him from the back. He is my miracle boy and I want to say thank you to each of you for the prayers over this difficult time.

We MRI on the 20th of July 2010 and then we will know what we are dealing with...... our prayers are that the surgeon got the whole tumor - cystic cells and all. He explained that he went very deep into normal brain and removed every part that looked like cancer, scare tissue and radiation damage.

Radiation is not an option in this country as we don't have proton (direct at the tumor) - Jed has had maximum dosage of conversational treatment. If there is growth we will take Jeddy out the country if need be but for now we just pray, breathe and hold onto the hope that the surgeon got it all out.....

With love and hugs
x x x x

Thursday, June 17, 2010

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!

Bonni Jed's mommy

Tuesday, June 15, 2010

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

Tuesday, June 8, 2010

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

Wednesday, June 2, 2010

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

Thursday, May 6, 2010

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


Love Bon

Tuesday, April 20, 2010

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
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!


Friday, April 2, 2010

Jed's MRI Results

2nd April 2010

Hi there,

Jed is stable, no new growth, still some cells that seem busy but no visible tumour growth or tumour - thank you all for your prayers. Whilst I am jumping for joy at this result I'm still fully aware of what brain cancer is all about and the joy of hearing stable is often replaced with the fears of the next MRI... I celebrate that living with this news for the next 3 months is a gift from God. We did not complete the spine MRI as Jed woke up during the MRI. The spine is always just a precaution.

Jed's IQ test has come back as Average (some area's slightly above average and other's slightly below) - this is a huge huge huge huge miracle. Let me remind you that Jed has had grommets, tonsils, adenoids, teeth before he was diagnosed and then, brain surgery (9 hours), recurrence that brought a more complicated brain operation for another 9 hours, followed by 31 sessions of radiation, a port operation, a BURST APPENDIX that sat in his gutt for 48 hours while he was in full septic shock (he went into surgery with a collapsed lung)..... and pulled through to follow aggressive high dose chemo for 81 weeks - we are currently on week 47 - this child is of AVERAGE intelligence along with 68% of the general population. That is a miracle! I wanted to attach the report but I have not received the electronic copy yet, as soon as I do I will attach it and send it off to you all.

The pychometrist and psychologist have come back with a lot of recommended therapy to correct the issues Jed is facing post surgery. Jed has a wiggle (shake) in his hands - this was a huge hamper during the IQ test as he writes VERY slow. This happened during his first surgery and while I have been fully aware of it I have not done anything about it but try and get him to TRY..... I have been advised to get Jed some educational packages on computer for him to work through. Awesome idea as he loves being on my computer and the shakes will not be as much of an issue. Occupational Therapy and physio were recommended. I have already started the OT but as Jed does not enjoy physio at all and finds it very boring (and I agree) we decided to rather continue with the swimming pool exercises and are trying him out at tennis lessons (15 - 20 mins a time)... It is all about Jed enjoying himself and having fun!! The other things they recommended I can do with him at home!!

The function is going ahead and an independent account has been opened. I believe about 60 of the 120 tickets are sold already. Ray's mom, Pat, has taken on this project to assist with Jed and Jordan's medical expenses. The tickets are 160 per person. It is a three course dinner (home made yummy food), we have booked a DJ and Cindy's Florist have given us flowers for the tables at cost price. So far it is all coming together nicely. There are going to be tons of give aways and a few raffles at the evening. Please let me know if you want a ticket and I will gladly send off the details. We have booked the date for 15 May 2010 at the Edenvale Moth Hall (also free). May is brain and spinal cancer awareness month! Attached picture is taken near the venue!

Rainbows and Smiles (my little thing) delivered over R500 worth of goodies to Unitas on Wednesday. Toys to make children smile. Iona got a little teddy that you make yourself and some beads, Aiden a dump truck, Reef a music system, A new Leukemia child got a puzzle and panda bear and a new brain cancer child - art set and model car set to keep him busy while he covers. I LOVE giving out the toys and I believe it is the best therapy for me. I'd like to thank Winny from The Magic Company for the donation of 2nd hand clothes and bags.... come on people - we all need to clean out our cupboards for winter.... I sell the clothes and use this money to buy the toys. Rainbows and Smiles next project is to assist an 8 year old orphan (cancer child) with some clothes, food and smiles toys. Canca TLC have given me her details and I'm looking forward to selling clothes to do this for a child!! So please let me have your scraps to sell off to people who need the clothes... it is a win win all round.

Lastly, please pray for our boy Jordi who has his surgery on the 14th of April - we pray for a successful surgery and that he is up and walking too. Please pray for Michelle on this day. We will be seeing Dr Edward Gurnell on the 13th of April - the dude from Carte Blanche Medical regarding his medical breakthrough on mice with brain cancer - I need to know when they start testing on humans and how advanced the current technology is. Please continue to pray for this research with Scorpion venom.

Reef needs prayers for his Liver, Jaryd is in for aggressive chemo and please remember all our children with cancer and the parents of children no longer with us!

In God we Trust and continue to thank him for Jed's healing.

Love and hugs

Thursday, March 18, 2010

General update

18th March 2010

Hi there,
It has not been an easy couple of days. On Tuesday morning at 7am we lost Connor Ross! To those who have supported me through this emotionally-charged situation I can only say thank you. I’m broken to the very core and I just can’t believe that this precious child has left us. It feels like in one horrific, terrifying moment the reality of cancer has hit us once again.
There is nothing anyone can say or do that will ease his mother’s pain. Leigh was in the process of raising funds to get Connor his bone marrow transplant; his passing away is a horrific shock to all of his family and his extended oncology family. I received some well thought out advise “Bonni distance yourself from these children”.... well my comment is “there is enough people distancing themselves”. I have started taking the anti-depressant again and will continue until this HUGE hole in the pit of my stomach is gone. I can do nothing but think of Connor with his woolie sheep laughing and playing with Jed. He would always share his vomit bucket with Jeddy. When Jed walked in the room his whole face would light up. I am honoured to have spent Sunday with Connor where I got the opportunity to spoil him with games and smile toys. We also got his mommy some nice goodies and snacks – it may have made NO difference to the outcome but for the time I spent with Connor he was happy and looked forward to playing with the toys and games we got for him. (Thank you to Andrew Geddes for his donation to “Rainbows and Smiles”)
See attached picture!
Jed is okay – no I have NOT told him about Connor – I can only protect him from this sadness and it is a decision I do not regret and believe strongly in. I have never lied to Jed so if he asks about Connor I will tell him “he’s gone home....”
Jed has mouth sores and a huge mouth abscess from the chemo and his lowered immune system. We are treating it aggressively with two strong antibiotics; if it has not cleared up by Friday afternoon, Jed will need to go into surgery to have the abscess drained. Feeding him is NEVER easy and now you can just imagine how hard it is... even his bottle is hurting his mouth so we are syringe feeding him and giving him soft goodies. Yoghurt is a no no as Jed is neutropenic.
We will be hosting a fund raiser for Jed and Jordi on the 15th of May 2009. May is Brain and Spinal Cancer Awareness month. Both Jed and Jordan have escalating medical bills and as Michelle and I are both not working we need the help of our support base. We are looking at having an evening of fun, dance and plenty of snacks and food. We are selling tickets at R160 and at this stage we are hoping that Jed and Jordi will be able to attend the function. We only have 120 tickets so please let us know if you are keen.
Rainbows and smiles is a little charity that I have started, the aim is to support children with cancer by making them smile. The charity will assist with anything the family needs, from food, snacks, electricity bills anything..... I raise money by selling 2
nd hand clothes – last month we raised R500. A special thanks to Elizabeth, Michelle, Andrew, Barbara, Deirdre (from Planet Nails in Lambton) and my little old mom who donated so many bags of clothes. Anything sells so please think of us when cleaning out your cupboards. We sell them to the cleaners who in turn resell them so we need heaps of stock to make a difference.
Jed’s MRI is the 31st of March at 8am.... “In God we Trust”
Keep praying and sending me your love and support – I promise you it is needed!

Thursday, March 4, 2010

Update - lots of assessments

4th March 2010

Hi there,

It has been a while since I updated. I got to the point where I felt I didn't want to overwhelm you guys with all our life issues but today I was the one overwhelmed by you asking for an update. So before I start, thank you for caring so much about Jed and please, if you don't want to receive mails please let me know - no offense will be taken I know everyone is busy at work... that way if you want an update you can view his blog at http://jedjourney.blogspot.com/ or his facebook group "Save Little Jed".

It has been a very busy period for me with Jed needing lots and lots of testing to determine what damage has been done to his brain from the radiation. Sometimes the damage only shows in later years so we needed a starting point to refer to. We had a Psychometrist assess him and she did a 2 hour evaluation with him. We will get that report in about a week or two. He also had a 4 hour eye exam... most of the time he spent annoying the lady trying to test his eyes - the test was broken up over two days as Jed got soooooo bored during the testing. I am VERY happy to report that Jed's vision is 100% perfect. Considering the location of the tumour this is wonderful news and well worth the cost of the test!!!! He then had an evaluation by a new Occupational Therapist - they think he has SID (sensory integration disorder) caused from the cancer - the OT - Rachel will work with Jed every week on a Thursday from now on. Jed is still doing his swimming instead of the physio and he is doing very well - he has managed to swim 5m across the pool - I'm so proud of him. On the 13th of this month Jed has to see an educational psychologist as part of the recommendation from the psychometrist to determine if Jed will be able to attend a main stream school next year or will he need a remedial school. I honestly I don't mind either way as long as he gets to go to school!!!! I also took him to a homeopath to see how she could work with the oncologist - that turned out to be a complete waste of money as none of the medication, although natural, can be given to Jed according to the oncology dietitian... so who knows.... A special thank you my cousin Rachel in England who did some fund raising and this is covering a large part of these expenses!

Jed was due for an MRI on the 2nd of March - yip yesterday - the neurosurgeon and doctors have decided to push the MRI out to see the real effects of the chemo and to see if the contrast enhances over this time. His MRI is booked for the beginning of April. I am extremely anxious about this decision and Jed is very shaky in the mornings and then I have all kinds of negative thoughts but by lunch time the shaking improves and he is filled with energy.

Jed's chemo did not go well on Sunday and he has developed an allergy to Carboplatin chemo - this was a rather serious reaction - he went bright red and his ears started burning - he was screaming "help me Mommy" - the nurses administrated phenegan - allergy medication and the reaction stopped about 20 mins later. Going forward the doctor and I have agreed to pre-treat Jed with allergy medication to avoid the allergic reaction. Jed will also be monitored very closely as the chemo is given. Nothing in life is ever simple hey!

Jordan's surgery has been moved to the 14th of April so please keep that date in mind for extra prayers. The other day Jords was playing with his water gun in the pool and he pointed it up to the sky and shot it towards the heaven and then shouted "hey mom I shot God" - I found it rather funny as the relation is very real to Jordi and he was having fun playing water guns with his heavenly Father!

Vusi has finally had his ballie removed from his tummy - today in fact - and was sterilized at the same time. Even this made me sad, I now will never be a granny, the chemo and radiation have made Jed sterile. Even this is a mild concern considering what the overall risk is!

Thank you for your loving messages on mail and thank you for not forgetting me. If one thing I can tell you besides this being a horrid experience - it is also very lonely at times.

My life sure has changed!

Attached is a photo taken by my friend Jenny of Jed playing in her garden!

Love and gentle hugs

Monday, February 8, 2010

Positive News

8th February 2010

Hi there,

Jed's chemo went very quick and so well - no tears and he got a certificate for bravery from the sister! This week we did only Vincristine. His counts look really good. HB is 10.7 (just below normal), White cells at 3 (very good for a chemo kid) and platelets at 142. Even the Neutrophil counts are looking good so no in jecting my boy for a while. I am enjoying having this new "healthier" son around!!! Thank you so much for your prayers. PLEASE keep them coming... we still have a long road ahead!

Some other positive news is Jed is finally starting to eat better - he is eating Jungle Oats in the morning - which is amazing!!! And he has started to eat mince (5 - 6 spoons at a time) that Ray's mom is making for him. These are 2 new additions to his very limited list of food items so I'm very pleased and I think the food may have something to do with the increase in blood counts. This is also a sign that perhaps the monster is not there, as he is finally eating - although it is baby steps they are in the right direction....

Jaryd Smith - Rainbow boy - is having his spinathon on Saturday. Please feel free to pop in and support. I'll be the half dead girl on a bike - I've commented to spinning for 5 hours....mmmmmm I wonder if I will survive that. I'm actually really excited for the day and I'm hoping Belinda's fund raiser will be a huge success. Jaryd's wants to work with children with cancer and the fundraiser will enable him to help others and pay his own treatment expenses. What an awesome kid! Imagine wanting to help others after a 12 hour operation on your leg and the most aggressive chemo. His determination and courage should be a testament to us all! Jaryd is 9 years old!

Jordi's operation has been moved to the 3rd of March 2010 - both Jordan and Michelle have flu and had no alternative but to move the operation. Please keep praying that Jordan's operation will be a success and that he is walking soon!

Tomorrow I will be attending a CANSA TLC training session to enable me to support others. Please pray for me. I am very torn as to HOW involved I want to be with cancer families. My heart has really taken a beating with seeing much suffering but I do feel that I've been placed here and I need to ensure that I do my part. What my part is - only God knows???

Keep praying for the J's - Jarry, Jordi and Jed and remember darling Reef, Jono, Bi-arke, Leah and Aiden.

Attached is the information on Jarry's spinathon!! If you can't spin, pop in and laugh at me - it will be good for your soul!

Love and gentle hugs
PS: Vusi is not having his ballies done this week as previously stated, the dam vet refuses to come out of the operation to inform me how the operation went - he says he won't have time..... oh really! Well I will be taking my other son to another vet who will have time! Vusi's ballie is actually a bit of a concern as the one is trapped up - near the top of his willy - so they have to do a double cut and my boy weighs 1.2 kg..... Not a serious concern but another normal for me.... I'm having lots of normal moments and loving it! Imagine enjoying stressing over NORMAL stuff - it feels wonderful!!! - embrace your normal moments and enjoy them.

Wednesday, February 3, 2010

The monster is sleeping

1st February 2010

Hi there,

Jed's big chemo went okay on Monday - Neutrophils are very low at zero so I am injecting him daily with Neupogen; which is torture. Imagine injecting your baby - it totally sucks. Anyhow 4 down and only 1 to go. His counts are so low that I have had to make the decision that no visitors are allowed, so I'm feeling rather down. I am missing Jed's laughter as he plays with Thami or Jordan. Jed is also having pains in his joints from the Neupogen and Vincristine (chemo) but the swimming seems to ease this. He vomited coco pops all over Ray this morning which was pleasant to witness but after zofran Jed was feeling much better and so was Ray (after a wash)!!!

We saw the Neurosurgeon today who confirmed that the latest MRI scans look fantastic. There is no visible tumour however there is an increase in contrast. Is it cancer, is it surgery scaring, or is it radiation??? At this point we don't know - we are just blessed that there is no visible new growth and that for now we can breath a little easier. We have 40 weeks of intense chemo left and 6 weeks after that we can do a PET scan and confirm if the cancer is still there. At this stage the monster is sleeping...... I already have "scanxiety" for the next MRI which will be end of March 2010. I have joined a Pilomyxoid support group and realise how truly blessed we are with this news as so many are not as lucky :-(.... I am still going to send the MRI to the states for their input - turning every stone - twice, three times, whatever is needed.

some other updates:

Jarry is doing well after his 12 hour leg save op and a direct quote from Belinda his mom which I received on Monday

Jarry will continue with chemo and they have a long road of physio ahead but what a wonderful bit of news, thank you to everyone who made rainbows and sent gifts for him. I appreciate it so dearly and I know Belinda was delighted with his room and the gifts!!!

Jordan Tromp's MRI remains clear - he is in full remission - NO EVIDENCE OF CANCER in his spine - what an amazing miracle that is!!!! Jordan will have surgery on his foot on the 8th of February in an attempt to get him walking. Jordan is still paralysed from the knees down but Michelle has found a surgeon who is believes he can get this little boy walking with "walk aids". Now that will be the ultimate for Michelle and I can just picture him walking and I can't wait for that day. Please send lots of prayers for Jordan and Michelle. This is a little boy that has overcome cancer and now begins the journey to regain his strength so he can walk again!!

And finally, please may I ask for prayers for Irma and Jan - Rene's mom and dad. After losing their precious daughter in December they are now faced with financial ruin. They have been evicted from their home and lost just about everything material. These parents are grieving is that not enough!!!!! I have transferred R500 from Jed's fund to them and I pray that this can at least provide some help for them. I am determined to get my ass into gear to raise funds and awareness for children like
Jed, Jordan, Jarry and for families, that like Rene's, loose EVERYTHING because of this HORRID disease!!! It just doesn't seem fair.

Attached is a photo of Jed10 with a MASSIVE DHL Truck - we are keeping up our operations skills by route planning and Jed is very proud of his mommy's work truck - thank you Steve!

Love and hugs
Bon, Ray and Vusi
PS: Vusi is having surgery on the 9th of Feb - de-ballies - nothing serious but ja, while i'm nagging for prayers - just add our puppy please!

Tuesday, January 5, 2010

Chemo update

4th January 2010

Hello friends, Chemo went well. Jed's counts look good'ish (is that a word)....10.2 for HB (nice, low but nice), White cells 3 (low but okay'ish) and platelets at 56 - eeeeeeeeeeeeeeeeekkkkkkk - I started giving Jed a supplement called "Shark Liver Oil" and his platelets have been great - last week I was advised to give it to him every 2nd to 3rd day as the Vit A content is a little high in the South African product so .... his platelets are dropping.... I'm going back to one a day from tomorrow and I will see if they climb again and will monitor his Liver Functions.... I have also added Garlic and parsley to his supplements.... In my last mail I mentioned that Lefa was in remission...... I was wrong, he died.... he relapsed and he is gone.... I'm so broken and hurt! I remember Lefa and Jed running around the ward and together undoing their drips - as they both had ports - blood came shooting out and messed all over Jed; he looked like he had been stabbed. At the time it was not at all funny.... looking back I can picture these two little monsters playing with the drip lines.... Lefa had a gorgeous smile and the most beautiful dimples. Once when he was in ICU I went up with toys and goodies for him and he opened his eyes and said "hello mama Sipho, I love you" (Sipho - Jed's nickname)...... I remember thinking what a gorgeous kid he was and how with that one sentence he melted my heart! I asked the doctor today why so many of our children were dying, (today the hospital was empty.... only Jed ......) and he said "Bon, out of 10 children with cancer, 8 die".... this is my life, this is my reality and this is my worst nightmare.... I can't even express in words how helpless I feel.... the reality of cancer doesn't hit you as a parent until you see the devastation with your own eyes. WHY OH WHY is more not being done for our babies...??? - I'll tell you why, because after a child dies a parent stops breathing for a while, they break, and when they pick themselves up they can't face anything to do with cancer, so they close the book and move forward.... - with breast cancer - people survive and commit to awareness campaigns and charities and fun-walks and posters.... you know I read fair lady mag over breast cancer awareness month and there were 3 full page adverts. During childhood cancer awareness month - NOT ONE magazine had a gold ribbon advert, no lady at clicks handing out FREE gold ribbons... zip, nothing, zero......... if you think having breast cancer is hectic (and trust me I know it is) - try hugging a mother who has watched her child fight and then die from cancer.... My dream is to see pink, gold, red all equally represented! ..........(And as she pulls herself together) Please remember Jarry's big operation is happening on the 14th of January 2009, may I please ask that you pray for him. I will be fasting and praying on the 13th and I will be visiting the hospital on the 14th to be with his mommy! Reef is doing better and is home (finally) with his mom and dad! If you would like an update on Reef please mail me as his gran sends an update from time to time. I am also planning a fund raiser breakfast for some time towards the end of January - just waiting on my mind set to correct itself and then I will communicate the details. The money raised will go to Jed and Jordi's fund account. Jed for supplements and Jordi is in need of a super cool wheelchair. The gold pins from CANSA arrived. I was allocated 85 pins to sell. The pins are R30 each and are for childhood cancer awareness. This has nothing to do with Jed or Jordan's fund - it is for the TLC CANSA association. Please re-send any orders to me directly and you can transfer the money to Jed's account directly. I paid for the 85 out of my personal account (for admin issues) and transferred to CANSA. I was told that it was easier for the allocation of the money. Please continue to pray for us and keep us in your hearts! Attached photo was taken on New Year's day! With love and hugs

Sunday, January 3, 2010

First post for 2010 - in God we trust

3rd January 2010

Hi my friends, As I sit here reflecting on advances and set backs over the past couple of years, I wonder what the next one has in store for us. For my oncology friends who are sleeping on hospital chairs in their children's cancer wards and watching their children whilst facing their deepest fears, may you be able to sleep peacefully for a moment today.... May the beeping machines and chimes not wake you unnecessarily my precious friends. For Irma, Jan, Voilet, Melissa, Sandra, Wendy, Lauren, Dawn and all those coping with the recent or not so recent loss of a child, may you find a measure of peace knowing that your baby is no longer in physical pain and that they live on in your hearts and the hearts of those who were blessed to have known them in this lifetime. For those who rest living between MRI scans awaiting MRI verdicts & the resulting sentences, may you be able to find a little time to treasure the good moments and not let life pass you by as you worry. For those in remission, (Jordi, Lefa, Reef and Darrien), let them savour all the life they can and let them live life to the fullest! To my Jeddy, my miracle son, You are my prince, my gentle warrior and my very best friend. I am blessed beyond words to be your mommy, gifted with the joy of your presence in my life. Five years have flown by and I can only pray that Jesus blesses us with so many more years together. Jed you are gorgeous, I cherish our moments together, whether watching cartoons or figuring out a new action figure.... Being with you is knowing intrinsically the speed of time, and my helplessness to slow in down even for a minute. I need only watch you sleep to feel a sting in my eye - I love you Jeddy and I thank God that he has brought you thus far! Please pray for Ithuteng's mommy Violet, he got his angel wings on New Years eve..... no bone marrow match was found and we lost a very special child who we all loved dearly. The attached photo was taken of Jed and Ithuteng after Jed's appendix operation - the boys loved to swop Playstation games and run around the ward. I know Ithuteng has left a huge crack in my already broken heart.! Please pray for Jed's port to give blood, the port has somehow blocked and the doctor's can't use it for blood tests. As you know Jed goes weekly for chemo, blood tests and if required tranfusions so his port is essential ....On Monday he was "pricked" twice - his veins are not very good. Please pray for Jaryd who has major surgery on his leg on the 14th of January 2010 - this operation is to clear him of cancer (Ewings Sarcoma) and the surgeons are confident they can save his leg. Pray for strength for Belinda and Jason as they wait outside the theatre - it can be a very hard wait; time freezes...... Jaryd's counts are still very low so we need to pray that he starts eating and gains some much needed weight before his operation to give his body a boost! And lastly, thank you for praying for us, for believing with me and for being my strength. Thank you for supporting me with words of encouragement. Each e-mail and sms has been cherished and appreciated! There is no way I would still be sane without you and I ask that you please continue to walk with me on this journey; with Jesus leading the way!

Love and hugsBonni, Jed10 and Vusi