Thursday, June 17, 2010

Today's update

17th June 2010

Hi there,

I have just called Linksfield to confirm that post surgery Jed will be in isolation and have a dedicated sister looking after him. Dr Klass (pediatrician at Linksfield he actually dx Jed back in August 2008) has confirmed that they have staff issues due to the soccer but will ensure that Jed is given priority. He said he and Dr Weinberg discussed once again the risks of the surgery and from then on I heard bla bla high risk bla bla due to radiation healing is a huge problem bla bla bla....... as long as my son is pain free and I want to see his smile asap, the rest is just talk at this stage!!!

Today Jed is still mobile, he is falling like a drunken boy but he is still determined to move around and be independent. He has fallen three times pretty badly and I think he may have cracked his nose as it is swollen and blue.... but he is not complaining of pain at all. His best friend Thami (see photo) is staying with us and they are laughing playing games and enjoying normal things boys do. So neurologically Jed is "okay"..... the nausea is controlled with the very high doses of steriods - I am yet to see the steroid rage come out. Although he is very emotional - crying about silly little things like the TV on the wrong channel or his bottie not warm enough so the steroids are kicking in as Jed is normally so sweet.

I got busy and organised today. Got Jed's new bedding for the hospital and goodies to decorate his room - I'm going Toy Story 3 as it seems to be very "in" at the moment. I have got him a duvet, pillow, carpet and a few dvds for the hopital. I got him sheep skin from Michelle and special creams to prevent bed sores. I have meds for tummy issues related to high doses of pain medication. I have clear liquids and new bottles - I got zip up tops as nothing will be able to go over his head (already there is swelling). I have purity and liquid food supplements, nappies as he won't be able to move and bed sheets and wipes.... please let me know if I have forgotten anything. Feeling organised makes me feel in control and with cancer u have NO control so this obsession is therapeutic at this stage. I'm sterilizing the bedding and hospital clothes now and will pack them up tomorrow - "keep on swimming, keep on swimming, keep on swimming!!"

Gillian Declan's (he sadly passed away from cancer) mom dropped off some cooked meals which was a wonderful and welcomed surprise, as you all know I just HATE cooking so starving to death would suit me right now... Ray has already lost 12 kgs with all this cancer stress and I guess I found half of the 12kgs which is great as eating seems like a huge mission (I have room to starve a bit) but yes, we are keeping up our strength.

Please pray, I'm isolating myself more and more I guess this is selfish but I just know that if I speak on the phone it may just push me over the edge which I'm currently leaning over - toes already gribbing the sides... today Alida phoned and it took so much strength not to cry that I think I landed up sounding rude, sick and mad.... so let's stick to mails.... but thank you for the beautiful messages of strength and love at this putrid time!

Bonni Jed's mommy


  1. Bonni,

    Don't forget your stuff, comfy hospital jammies and slippers. MP3 player loaded for you, headphone splitter cable or speakers for listening together. Got any little-boy funny books on MP3?

    Sending positive vibes across the world.
    Janet, Luke's mom

  2. Bonni thank you for the update. Ever since I read your news on Facebook you have been on my mind constantly. I'm glad you're going for more treatments and I keep praying for a miracle for Jed and you. I understand about isolating yourself.. I did the same when Max was sick and I just needed to focus on him and my family at that time. It isn't selfish to isolate yourself, you are doing what you need to do to be able to be there 100% for Jed when he needs you the most.
    I'm glad Jed has his friend staying over and that they're enjoying being boys together. Enjoy this time with them... it will help you through the days to come.
    You look well packed for Jed and his hospital stay but like it has been said above you need to remember your own things too. I don't need to tell you that you will be there night and day but make sure you pack some things just for you. Your favourite shower gel and body spray, a couple of light reading books and of course what the poster above me suggested as well.
    When Max was in I knitted.. I made three sweaters sitting by his bedside when he was in the first time. Knitting kept me busy and also I was able to listen for alarms from his IV and it was easy to drop when someone came in to talk to me.
    Stay strong and I am sending many prayers your way!

    arlene in canada

  3. Keep on swimming, keep on swimming. Love and prayers.
    Avril in NZ.

  4. ......footsteps in the sand....
    there's only one set because the good Lord is carrying you and the Jed....

  5. In my thoughts and prayers all the time, Bonni, Ray, Sweet Jed10, Jean, Thelma and the rest of the family.
    I wish I could give you all a big fat hug!!!!
    All my love, Irma Steyn xxxxxxxx

  6. Bonni, I found my way here throught the PBT group I wanted to check in and see how you are. I agree with the other comment make sure you have stuff for yourself at the hospital comfy clothes and snacks. Maybe some pictures of home or friends. I am praying for you and Jed, do you have a surgery date?
    Cheryl (Joel's Momma)