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

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
Bon

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!
Hugs
Bonni

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
Bonni

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
Bon
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.

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
"HOT OFF THE PRESS!!!!! Doctor has just phoned me......the histology results are 100% clear.....Did you hear me 100% CLEAR.....NO LIVING CANCER CELLS COULD BE FOUND....NOT EVEN ON THE BONE THEY REMOVED, NOT IN THE SURROUNDING TISSUE, NOWHERE....GOD, YOU ARE SOOOOO VERY FAITHFUL AND AMAZING AND I'M SO STOKED I CANT STOP CRYING!!!!!!!!!!!!!!!! "

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!