Chemo update

4th January 2010

Hello friends, Chemo went well. Jed's counts look good'ish (is that a word)....10.2 for HB (nice, low but nice), White cells 3 (low but okay'ish) and platelets at 56 - eeeeeeeeeeeeeeeeekkkkkkk - I started giving Jed a supplement called "Shark Liver Oil" and his platelets have been great - last week I was advised to give it to him every 2nd to 3rd day as the Vit A content is a little high in the South African product so .... his platelets are dropping.... I'm going back to one a day from tomorrow and I will see if they climb again and will monitor his Liver Functions.... I have also added Garlic and parsley to his supplements.... In my last mail I mentioned that Lefa was in remission...... I was wrong, he died.... he relapsed and he is gone.... I'm so broken and hurt! I remember Lefa and Jed running around the ward and together undoing their drips - as they both had ports - blood came shooting out and messed all over Jed; he looked like he had been stabbed. At the time it was not at all funny.... looking back I can picture these two little monsters playing with the drip lines.... Lefa had a gorgeous smile and the most beautiful dimples. Once when he was in ICU I went up with toys and goodies for him and he opened his eyes and said "hello mama Sipho, I love you" (Sipho - Jed's nickname)...... I remember thinking what a gorgeous kid he was and how with that one sentence he melted my heart! I asked the doctor today why so many of our children were dying, (today the hospital was empty.... only Jed ......) and he said "Bon, out of 10 children with cancer, 8 die".... this is my life, this is my reality and this is my worst nightmare.... I can't even express in words how helpless I feel.... the reality of cancer doesn't hit you as a parent until you see the devastation with your own eyes. WHY OH WHY is more not being done for our babies...??? - I'll tell you why, because after a child dies a parent stops breathing for a while, they break, and when they pick themselves up they can't face anything to do with cancer, so they close the book and move forward.... - with breast cancer - people survive and commit to awareness campaigns and charities and fun-walks and posters.... you know I read fair lady mag over breast cancer awareness month and there were 3 full page adverts. During childhood cancer awareness month - NOT ONE magazine had a gold ribbon advert, no lady at clicks handing out FREE gold ribbons... zip, nothing, zero......... if you think having breast cancer is hectic (and trust me I know it is) - try hugging a mother who has watched her child fight and then die from cancer.... My dream is to see pink, gold, red all equally represented! ..........(And as she pulls herself together) Please remember Jarry's big operation is happening on the 14th of January 2009, may I please ask that you pray for him. I will be fasting and praying on the 13th and I will be visiting the hospital on the 14th to be with his mommy! Reef is doing better and is home (finally) with his mom and dad! If you would like an update on Reef please mail me as his gran sends an update from time to time. I am also planning a fund raiser breakfast for some time towards the end of January - just waiting on my mind set to correct itself and then I will communicate the details. The money raised will go to Jed and Jordi's fund account. Jed for supplements and Jordi is in need of a super cool wheelchair. The gold pins from CANSA arrived. I was allocated 85 pins to sell. The pins are R30 each and are for childhood cancer awareness. This has nothing to do with Jed or Jordan's fund - it is for the TLC CANSA association. Please re-send any orders to me directly and you can transfer the money to Jed's account directly. I paid for the 85 out of my personal account (for admin issues) and transferred to CANSA. I was told that it was easier for the allocation of the money. Please continue to pray for us and keep us in your hearts! Attached photo was taken on New Year's day! With love and hugs