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