In God we Trust

At about midnight last night Jed got a sudden fever of 38.5 - is it not amazing how a mommy just knows. I woke up suddenly, put the light on and took his temp. Ray and I rushed him to Unitas... just before we left he did a huge pooh and it was ikki, blood coming out of his little bum and lots of screams of pain. Constipation is due to chemo and generally a poor diet. By the time we reached Unitas the fever had broken (I had already given 8mls of Panado). The blood results showed no infection. His reactive protein marker was less than 2 (anything above 5 indicates an infection). Other blood results; Haemoglobin (Red cells) at 10.2 (normal is 11 - 15), white cells at 5.97 (this is an escalated figure from the daily neupogen injections I gave Jed), and platelets are very low at 38 (this means lots of bruising). I am confident that his blood results will improve this week as we did not do chemo this Saturday. Next chemo is 100% Carbo (no longer the reduced dose) and Vincristine. Dr Reynders was amazing last night he spoke the nurses through what to do. So basically we rushed Jed to hospital due to a huge chemo pooh. Honestly to watch a 4 year old give birth to a pooh is very sad to witness but all part of the journey to recovery. We got home at 7am this morning with a happy little boy!

I have had a bit of an emotionally hectic time since the MRI. The build up and then waiting for the results is just too much for any parent to have to go through. I've been feeling very down and just to be honest I was so hoping for shrinkage. We are still dealing with 3cm..... I decided to make an appointment to see Dr Weinburg at Linksfield and have him go through the MRI report and scans with me. I wanted to compare the last scan with this scan from a neurosurgeon's point of view. Dr Weinburg did both Jed's brain operations. He was very positive about the MRI results and explained that at the last MRI the tumour was in 3 nodules and this as I understand it, is 3 growth points - the main one being at 3 cms. He could not clearly confirm that the nodules were still present (due to contrast issues) but he said the fact the tumour is not growing is "beyond medical science" - aka "a miracle".... let us prayer that this is beginning of my son's miracle and that soon we will see NOTHING on our MRIs. We spent a little while discussing the removal of the tumour (another operation) and he confirmed that surgery was not an option for Jed at this stage. He also mentioned that Jed's brain fluid was doing its job (no shunt needed) We discussed Jed's shaking in the hands and twitching legs and he explained it was damage from the surgery. I am blessed that this has been the only side effect and Jed is managing fine.

On the 30th of September I have an appointment to see a doctor Dr Sneakers - A neurosurgeon from Milpark. I would like to discuss his point of view on the tumour and will present him with the next MRI results (MRI number 7). I have heard that Dr Sneakers is one of the best. Seeing a neurosurgeon costs about R500 but I can honestly say it is money worth spending, I just feel like I understand the results better.

September is Childhood Cancer Awareness day and I have decided to try raise a little money to buy some "things" for the kids at Unitas. When the children go for chemo they generally spend 3 days in hospital a month (this is not counting the weeks they have infections) or if they are like Jed they spend every single Saturday at hospital. I'd like to raise some money to buy a few things like beading, fabric painting, lego, scrap booking, stamp pads and some little awards to hand out for the brave kids. These kids generally don't go to school so the joy of receiving an award is often unknown to them. I think a little medal or a sticker would go some way to helping encourage them. The nurses could give them out after major treatments, operations or bone marrow transplants. If anyone is interested in buying any items please let me know. I am also going to be selling T-shirts, caps and badges. The t-shirt will read "I wear GOLD for my hero" with a Gold childhood awareness ribbon on it. Everyone knows the red ribbon is for AIDS, the pink for Breast Cancer but how many people know that GOLD is for our little hero's that fight during their childhoods. I will also make a few T-shirts for the kids (if I have raised enough) that say, "BALD in the new cool" with a little Bald stick man. I have already paid for the artwork to be done and I am hoping to have samples by Monday. Please let me know if you would like to buy a shirt, cap, badge or donate a gift. Any gift ideas are welcome. As soon as I can the samples I'll send out an e-mail. T

And in other news, I got Jed a puppy, he named him Vusi, so there is a new addition to our little 10 family. Totally an impulse decision. As Jed is not allowed friends this little puppy is his new best friend. At the hospital last night Jed was screaming at the nurse to hurry up coz his puppy was waiting for his dad. I am now a granny!

And lastly, Jordi's chemo and treatment protocol has been completed which means his parents have booked his MRI - the date is 21st September 2009. I am going to request that we fast before his MRI for a day, to pray for Jordi's MRI results and for strength for his mom and dad (Michelle and Wayne). This will be their first MRI since Jordi's surgery, chemo and radiation. In fact we can all just fast for a cure for cancer too. No family should ever endure cancer!

"In God we Trust"

Love
Bonni, Ray, Jed10 and Vusi10 (the doggie)