Tuesday, January 5, 2010

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

Sunday, January 3, 2010

First post for 2010 - in God we trust

3rd January 2010

Hi my friends, As I sit here reflecting on advances and set backs over the past couple of years, I wonder what the next one has in store for us. For my oncology friends who are sleeping on hospital chairs in their children's cancer wards and watching their children whilst facing their deepest fears, may you be able to sleep peacefully for a moment today.... May the beeping machines and chimes not wake you unnecessarily my precious friends. For Irma, Jan, Voilet, Melissa, Sandra, Wendy, Lauren, Dawn and all those coping with the recent or not so recent loss of a child, may you find a measure of peace knowing that your baby is no longer in physical pain and that they live on in your hearts and the hearts of those who were blessed to have known them in this lifetime. For those who rest living between MRI scans awaiting MRI verdicts & the resulting sentences, may you be able to find a little time to treasure the good moments and not let life pass you by as you worry. For those in remission, (Jordi, Lefa, Reef and Darrien), let them savour all the life they can and let them live life to the fullest! To my Jeddy, my miracle son, You are my prince, my gentle warrior and my very best friend. I am blessed beyond words to be your mommy, gifted with the joy of your presence in my life. Five years have flown by and I can only pray that Jesus blesses us with so many more years together. Jed you are gorgeous, I cherish our moments together, whether watching cartoons or figuring out a new action figure.... Being with you is knowing intrinsically the speed of time, and my helplessness to slow in down even for a minute. I need only watch you sleep to feel a sting in my eye - I love you Jeddy and I thank God that he has brought you thus far! Please pray for Ithuteng's mommy Violet, he got his angel wings on New Years eve..... no bone marrow match was found and we lost a very special child who we all loved dearly. The attached photo was taken of Jed and Ithuteng after Jed's appendix operation - the boys loved to swop Playstation games and run around the ward. I know Ithuteng has left a huge crack in my already broken heart.! Please pray for Jed's port to give blood, the port has somehow blocked and the doctor's can't use it for blood tests. As you know Jed goes weekly for chemo, blood tests and if required tranfusions so his port is essential ....On Monday he was "pricked" twice - his veins are not very good. Please pray for Jaryd who has major surgery on his leg on the 14th of January 2010 - this operation is to clear him of cancer (Ewings Sarcoma) and the surgeons are confident they can save his leg. Pray for strength for Belinda and Jason as they wait outside the theatre - it can be a very hard wait; time freezes...... Jaryd's counts are still very low so we need to pray that he starts eating and gains some much needed weight before his operation to give his body a boost! And lastly, thank you for praying for us, for believing with me and for being my strength. Thank you for supporting me with words of encouragement. Each e-mail and sms has been cherished and appreciated! There is no way I would still be sane without you and I ask that you please continue to walk with me on this journey; with Jesus leading the way!

Love and hugsBonni, Jed10 and Vusi