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