Tuesday, August 25, 2009

In the olden days

23rd August 2009


I sit here and wonder if in 10 (or 20) years time a mother of a child with cancer will say... "did you know that about 10 years ago mother's gave consent for their children to have chemo" and mother2 would say with horror in her voice "I actually heard about a mother of a 4 year old boy who actually gave the chemo tablets to her son!!!" and the mother1 would reply "could you just imagine how stupid and desperate that mother must have been to give her own child poison!!".... God I pray for a cure... I just don't understand why poison is the only treatment protocol. We send men to the moon, fly across oceans and yet we can't cure cancer! I was reading in my Brain Tumor Mom's Support Group that you are advised to wear gloves and a mask when giving your child oral chemo (this was our first treatment back in Feb) to protect yourself from the toxic chemo. You should also wear gloves and a mask to clean up "chemo" vomit. Well oops...... chemo vomit has been my perfume for months now!

We didn't do chemo this week as Jed's platelet count was only 29. The chemo has suppressed his bone marrow so we will have to wait to see what the counts are next week. I pray they are good as I know that the treatment is essential. His blood counts have not recovered in 3 weeks and this is a huge concern for me.

x x x
Heaven got another angel this past week. Nicole - please pray for this child's parents!
x x x

An update on my little Childhood Cancer Awareness Drive... I have raised a little money so far for the kiddies. I am hoping to give each child a teddy (as seen in the picture). The teddy shirt will read "I wear gold for my hero" Gold being the childhood cancer ribbon. If anyone is interesting in supporting this drive please buy a shirt, cap, badge or teddy. ALL THE PROFITS will go to gifts for the children at Unitas hospital. I'm hoping to raise enough to get each child a teddy and activity toy. If you don't want to purchase anything you can donate a toy. I don't have a separate bank account for this and it is not an official fund raising thing, it is just a small token for these kids. Some of the moms have asked for a shirt so if there is any money left, I will give them a shirt. Many of these moms (like me) no longer work so it would be a nice gesture from us. I think I'm doing this mainly to keep myself focused on something positive - when living in a nightmare you need to keep your eyes on the sunshine. I read in a book (my sister's keeper), "I'm building Sun Castles while waiting for the Tsunami"

This weeks prayer requests:

Reef awaiting Bone Marrow Transplant - Cancer Marker must be below 2% by Wednesday (some of us will be fasting on Tuesday and praying)
Jordan MRI due on the 21st of September 2009 - we also pray that he recovers the use of his legs
Erich - MRI due on Thursday (same tumor as Jed)
Luther and Nicole parents..... angels R.I.P

An our Jeddy - for platelet counts and for NO tumour GROWTH - hec pray for NO TUMOUR AT ALL!!!

And all children and parents affected by cancer.

With love and hugs
Bon, Ray, Jed and Vusi (the puppy)

Sunday, August 16, 2009

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"

Bonni, Ray, Jed10 and Vusi10 (the doggie)

Monday, August 3, 2009

No greater love

3rd August 2009


As i'm typing i'm fighting the urge to let the lump in my throat burst - I'll be wailing like a African mama at a funeral... I tell you the urge to explode is there.... I fight the physical pain in my chest with every key stroke... and the reason.. MRI... breath MRI.... breath... MRI MRI MRI MRI.... an MRI is our cancer marker... how is the tumour doing? We booked the MRI for the 5th of August 2009 on Wednesday... Please pray for wonderful results...please, please, please..... splash splash (my silly tears)

Jed had his big chemo although his blood counts are still super low the doctor advised that we could not delay for another week. Jed had 80% of his Carbo and the full Vincristine. He vomited lots during the night on Saturday but has been very chirpy today considering. Jed continues to amaze me with his determination and strength. On Wednesday I will start to inject him with neupogen (this will assist the bone marrow to start working).

Today I spend the morning at the craft shop and had coffee with Janet. I've missed this over the last two weeks... I felt I needed to get the break but I did spend 99% of the time with a massive headache from the stress of being away from my boy... Lucky for me, Janet knows me so ignored my pounding headache and chatted away about the "little things". As we walked out of the coffee shop i saw a mom with her son walking casually past us... I then asked Janet if that women knew how lucky she was that her son was healthy.... Janet said "No buddy, not unless she knows you or someone like you". Please don't ever take anyone for granted.

....lots of people have said that they don't know what to say to me... I'm at that point as I type the next part of my mail... To Becks (Anthony Beckley), Shirley Beckley (his gorgeous wife), Brian Hull, Chuck and Yunita Mowray thank you so very much for paying for Jed's MRI on Wednesday. Knowing the status of the tumour means knowing if our treatment plan is working.... you may be saving my babies life... how could I ever say thank you... thank you just doesn't seem enough....so no "right" words but know how much we appreciate this wonderful wonderful gift! May God Bless you for this! Anthony please don't be grumpy for the public mail... I just love you guys and I can't do anything else but tell you this way so let me just have this little moment to tell the special people just how wonderful my friends are....

Attached is my PERFECT boy, perfect in every single way.... no greater love!

Bonni, Ray and Jed10 000!