Chemo on Monday

24th November 2009

Hi,

Jed has been getting some fevers but nothing too hectic. His red cell count is low at 8.5 - which explains why he is sleeping through the night - well he did last night. His white cells are at 4 - still boosted from the neupogen shots and his platelets were at 98 - this is due to the neupogen and hopefully the Shark Liver Oil is working for him. Jed had Vincristine (chemo) yesterday and seems to have responded well. His legs are sore and he is not managing too well with the swimming at the moment. I have requested that today Sister Fiona cuts his swimming time down. Yesterday after 10 mins Jeddy was exhausted and just wanted to come home..... His infection marker is at 9 (just a cold) but Dr Reynders has sent away a blood culture... We have the "trolley" (Mel's old pram) and the push bike (with a handle) so if we go for a "walk" he has "wheels" and can relax and enjoy while mommy does all the work....

Christopher Beets is still not doing well at all. Please may I ask you to send the prayers - I have been told that it comforts his mother. Just knowing people care gives you enough strength to get through another minute, hour or day... they are going through every mothers worst nightmare so please do send a prayer or just some thoughts to Lauren. Mails can be sent to me and I will forward them on. To my special friends who have sent - I thank you so much!

We are doing Jed's MRI next Wednesday the 2nd of December 2009 - I just don't have the strength try sound chirpy as this is really playing on my mind. I hope that one day the MRI's get easier but for now I feel like I have a ton of bricks on my whole body and the pain in my heart is physical. I seem to be holding back tears all the time. Yesterday I went for a shower and took Vusi with... I sobbed and sobbed... Vusi was a great comfort.... YES I SHOWERED WITH MY DOG! Vusi is having an operation in 2 months time, the vet say that they have to cut the lump out as it could turn to cancer (I hope this means it is not cancer now). Even my f'ing dog is giving me a hard time!


Jed and I are off to the "reach for a dream" Christmas function on Thursday and Jed has written his Christmas Wish list to hand to Santa. Top of the list is a fish.... so ..... i wonder how Father Christmas will feel about a fish (I already know how dad feels about having another pet in the flat)

Please keep all Jed's friends in your prayers (the J team) Jed, Jarry, Jordi, Jono and the others, Rene, Reef, Lefa.......also I ask for prayers for Larry my brother, he is on a huge suicide mission - as life just does not seem worth it for him anymore.... He is so different since the accident and I can only JUST manage to hide my frustration as my son fights for his life - my brother just wants to end his....

If anyone is keen to do a fund raiser for Jed and Jordi (he needs a new wheelchair urgently) please let me know. I can provide a list of all expenses for the boys and trust me it is rather a heap to manage when one parent is no longer employed. Anyone who knows me, knows that I HATE asking so please just arrange something for my boys and don't even mention it to me... Jed's account details are on facebook and the blog. Facebook is "Save little Jed" and the blog is http://jedjourney.blogspot.com/

Attached is Jed and poor little Vusi - they are still cuddled up sleeping as I type this... the bond is so sweet.... Vusi is very tolerant!

Love and gentle sad hugs
Bon, Jed and Vusi

Fifth birthday Party at Shelley's house

17th November 2009

Hi there,

Yesterday was chemo - it is now moved to Monday's as it just fitted in with Jed's blood counts. Although Jeddy is full of flu the doctor went ahead with the Vincristine dose. Jed's blood counts were good due to the neupogen injections which I have been giving.

When we arrived at Unitas I saw Rene and had a "moment"... tears, snot and totally cracked.... then Vera from Cansa tells me to go to room12 for a therapy session... I am immediately "cheesed" right off. I was not in the mood for the ..."so tell me how you are feeling" kuk... but Vera doesn't take no for an answer. I marched off with my sulky face to room 12 only to find a massage lady waiting for me who did not say a word. I got a full back and neck rub and it was amazing. After that I had my hair cut (even shorter) and a blow-wave - a luxury I don't seem to ever find time to do... it once again, reminds me that there are people out there who do care and make a difference. Here is a thanks to the two ladies who volunteered to cheer the Onco moms up with free treatments.

Dr Reynders (aka Dr Rain-Deer) has confirmed that the MRI will be done in 3 weeks time. Naturally I have a bad case of PMS (Pre-MRI-Stress). The conversations in my head are driving me crazy and there seems to be no silencing them. I have the reasonable, hopeful and religious Bonni believing in the miracle and then there is the over-stressed paranoid Bonni picturing growth - I try to silence them by keeping focused on the now.... and the now is great. Jed has hair, energy and is strong enough for chemo. All we can do is pray that the MRI shows shrinkage or no sign of anything but normal brain tissue... oh God PLEEEEEEEEEEEEZZZZZZEEEEEEEE.....

Please may I ask that you pray for Jaryd (his 5th block of chemo started yesterday). We pray for a leg save and that NO physical damage is done to his leg - Jarry has Ewings Sarcoma. Rene is next - I have started making a scrapbook for her mom on her life; whilst making each page I grow to love this little girl more and more. Rene has a rare blood disorder and her body is rejecting her blood, on Monday her HB (red cell) count was 5.8 - she is bleeding from everywhere, ears, mouth, nose, her vomit is pure blood, so a miracle is really needed for my precious friend Irma and her baby Rene.... Reef is back in hospital with an infection marker of 200 - pray for strength for his mommy who was so excited to go home with him only to return 2 days later. Pray for Connor, he needs a bone marrow transplant as his AML blasts are at 6% meaning the chemo is not getting him to full remission... his sister Megan is hopefully a match if not I will be "toy-toying" (is that a word) for you all to get checked! Jono and Jordi are doing well - yippee.

Attached is a picture from Jed's birthday on Sunday - we got a Ben10 Four arms cake and spent the day with family at my sister's house.... thank you Lulu you are the best!

Love and gentle hugs
Bonni

My fifth birthday

Hi there,

Went for bloods again on Saturday and again Jed's counts are too low for chemo. His platelets are not recovering. He is full of bruises but in very good spirits.

I just watched him open a few of his birthday presents this morning - what a gorgeous little smile. Today my baby is 5 years old. Jed has given me the best 5 years of my life. I have learnt what I now believe to be the real meaning to life and he has forever changed me. I cherish every moment I have with him and I will never stop praying or believing in a miracle for my son.

Happy Birthday my love...

My precious little boy,
You are my pride and joy,
You are the perfect son,
I feel I have already won.....

For the ballies in your head,
a million tears I have shed,
And when it gets too hard at night
you wrap your arms around me and say "mama sleep tight"
Oh God please make this right....

Your soft little touches and gentle kiss
turns my hell into a peaceful bliss
I love your smile
I hear your tears
God knows my fears
Dear Lord I ask for many many more years

You make the sun shine on every cloudy day
I wish I could cuddle your pain away
Jesus please let my baby stay!

Creative juices are awake it seems......Happy Birthday my Snoekie Nocks..... I love you my baby.

Prayers for platelets to go up urgently required! A LP will be done on Monday next week to determine what is up with Jed's bone marrow. But until then I have asked for a complete break from hospitals, doctors, chemo, and cancer. This week I celebrate the joy of my son turning FIVE!!!!

Off to the zoo with Granny Barbara and my very own monkey!

Love and gentle hugs
Bonni