Monday, March 23, 2009

Jed and Mandy.... is it love!

Hi my precious friends and family,

Well I've just heard the news that my mom has been rushed to hospital. I knew that with my brother very ill in hospital (clinic) and the news of Jed's brain cancer that it would take it's toll on her. I'm not sure how she is (I have a feeling it is being down played to me!) and I ask only for your prayers. Boy when the wheels fall off they really do! My mom's name is Jean and my brother is Larry.

Jed had a good radiation session today and was a brave "still" soldier. and.....He has also found LOVE.... he has developed the biggest crush on one of the radiation ladies. Mandy! His whole face lights up when he sees her and this morning he said "mama I must be extra smart to see my Mandy lady by scanning today"... I actually only clicked when we arrived that this was in fact true love, he ran up to her and gave her the biggest hug and kiss - smack on her lips. She actually is very pretty and I will try take a picture of her for you.

At the pharmacy today, I was explaining to Jed that he couldn't eat his chips with his dirty little fingers coz he is having very strong scanning (aka chemo and radiation) and that the germs might sneak into his body. I didn't realise that the women behind me was listening but I heard her sniff. I looked up and immediately apologised for upsetting her (if I was the cause). She just smiled and said, "no i'm sorry, you see I also had a daughter once and she was just as gorgeous as your son!" I was shocked and just said "oh I'm so sorry, what happened" and she replied that her daughter also had cancer (Jed looks like a chemo kid now - the hair is a give away and the monster red mark on his cerebellar), she was diagnosed at 5 months with kidney tumors and died just before her 2nd birthday. This ladies daughter would have been 27 this year. I then asked the most stupid question - it just blurted out - I said "WHY DID YOU KEEP LIVING?" and she replied between tears "my darling, I don't know and I ask myself that all the time".... what an honest answer... she then said "but your son will be fine, I have faith". She said it with such conviction, if the doctors spoke like her I think I may stop my nagging researching all the time!.... I wish I'd gotten her name, this beautiful 50 something person but what I did get... is a hug and allot of positive energy!

Jed is still having nausea in the mornings and evenings but the nausea is almost instantly relieved with the new medication. Amen! Tomorrow is a big day for a few reasons, Jed gets to see MANDY at radiation (I'll be sure to make him look extra sexy); we have blood tests, which will determine how his count is looking; and we get to meet the team from REACH FOR A DREAM, they heard about Jed and have set up a meeting with us. They said I need to think of his dream... well his dream is to be big like his dad!

(nagging research time....) There is a child which we have located from "moments, 2009 cancer calendar" with a MYXOID TUMOR (the same cancer as Jed) and this child is in remission and is in Pretoria. The medical team work out of klerksdorp and the treatment they used is very new and sounds like a machine that you plug in at night and it sends out some kind of rador signal and the dad believes this has stopped his son's cancer. His son also had chemo but they did not do radiation, they did 3 surgeries as opposed to us, who decided on radiation verses surgery. The machine can't be used whilst you are on chemo and the technology is very very new. But the man in klerksdorp has asked me to send Jed's latest MRI, some hair (mmmmm) and nail samples, the pathology reports, and a photo of his eye. This is going to used to determine some kind of DNA analysis and to determine if the machine will work. Yes yes yes yes, it sounds odd.... I have not gone crazy but the reality is HIS SON IS IN REMISSION - he has quarterly MRI scans done and his child is doing very very well. I'm busy getting the goodies together and I'm hoping to post it off to the medical team tomorrow. I can just see my doctors face when I inform him of this technology - but I will NOT GIVE UP! Again, I thank my darling sister Lulu (Shelly) for locating this child and for stalking his parents until they replied. Lulu, your love for Jed and I has been so amazing - I love you so much for your determination!

Today's prayer request is for Jed, my mom, brother, hell include my dad who hasn't stopped drinking since the news of Jed, and that Mandy is prepared to wait for Jed until he is 21.....! (Mandy is about 20 now)...

With lots of love and appreciation to each of you.

Today's picture was taken with his new cool hat to protect his head from the sun (radiation = no sun shine!)

God Bless!
Bon and Jed

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