23 July 2009
Hi there,
On Thursday it is one year that my wheels started coming off. I got the call at 19h00 from my hysterical mom.... "Larry has had an accident on his motobike and I don't know what happened" she was sobbing, screaming and generally being a mom in crisis. I was sitting having my second bottle of wine and debating what to do... Pietermaritzburg to Johannesburg after one and a half bottles of wine ..mmmmm with a baby in the car. I then phoned and got to speak to the chap in the ambulance and was told it was a "P1" case... I remember saying what does P1 mean? and he said PRIORITY ONE - your brother could die. I went crazy... I remember kicking the cupboard door down and sobbing uncontrollably. Over and over I kept thinking, this can't be happening I have already lost my brother Robin, please no no no ..... I arrived in JHB at 3am on the 24th of July and saw Larry laying asleep and "fighting" for his life. I remember thinking "nothing could be worse than losing my brother..... nothing".... 8 days later my son was diagnosed with a 6cm brain tumour! My two favorite boys both having head troubles.
So Jed and I decided that the 23rd of July 2009 was not going to be a sad day and we were going to some how make this a celebration of life. Socky Gwan (my aunt) was coming to visit and it was her birthday the day before. Funny Gwan had to stay behind as she had a slight cold. Socky Gwan is in remission from cancer which spread to her liver. Socky is our miracle. Jed and I decided to throw her a surprise birthday party. We made a huge Soccer cake, cookies, cup cakes, and loads of yummie snacks. Pastor Bokkie and Socky arrived early and we had a wonderful day. The 23rd of July 2009 was a wonderful day of love with my beautiful family. See picture!
Jed's blood counts were low - too low for chemo so yet again we skip another week. I don't have to explain my feelings on this as I am sure you all understand that I'm nervous about the tumour growing without the chemo. I just have to believe that if the chemo is this toxic the cancer must be having a hard time. I have to monitor my son very closely as his red cell count is at a dangerous 7.5 - the red cells carry oxygen. We take it day by day and if need be hour by hour. He has also been vomiting which is confusing me as the chemo is on hold. I do know that the side effect of his tumour was vomiting. I'm trying not to dwell on negative thoughts (this is taking loads of energy).
Jed's weight has dropped by 600 grams - he is back at 18.1 kgs. It takes me a full week to build up 100 grams but he can loose 600 grams in a week. I went looking for food supplements without more than the RDA nutrition (due to his treatment) and every dam item at dischem was about weight loss. I tell you there are too many fatties on this planet. You buy cheese and the heading says LOW FAT - yoghurt LOW FAT - I search my butt off for FULL FAT and HIGH KILO JULES. I'm trying not to stress about the weight loss - Jed had a active week last week.
I'd like to end my weekly mail on a lighter note. Jed's facebook site hit over 1000 members this week. I don't know 1000 people and although my friends and family were eager to join, it was amazing to realise the response on his "save little jed" site. I only send this mail - the facebook and blog site is the work of my Socky Aunt and mom. Anyhow I phoned my mom and said that I just could not believe how many people had joined the site. I was so grateful for the response as in my heart I hope it means they are praying for my baby. Anyhow my mother lets me in on her secret. She has been going on the site "Are you interested" - it is a chat room on facebook. She puts herself "out-there" and then when the millions of men show interest - she stalks them into joining Jed's facebook site. There is honestly no limit to a mother's love. Bless you my mommy!
I ask with all my heart that we pray for Jed's counts to go up naturally without blood products, we pray for a clear MRI in two weeks and we thank God for the miracle of Socky and Larry.
A special thank you to Barbara for the platelet donation!
With love and hugs
Bon, Ray and Jed (aka The Tens)
Hi there,
On Thursday it is one year that my wheels started coming off. I got the call at 19h00 from my hysterical mom.... "Larry has had an accident on his motobike and I don't know what happened" she was sobbing, screaming and generally being a mom in crisis. I was sitting having my second bottle of wine and debating what to do... Pietermaritzburg to Johannesburg after one and a half bottles of wine ..mmmmm with a baby in the car. I then phoned and got to speak to the chap in the ambulance and was told it was a "P1" case... I remember saying what does P1 mean? and he said PRIORITY ONE - your brother could die. I went crazy... I remember kicking the cupboard door down and sobbing uncontrollably. Over and over I kept thinking, this can't be happening I have already lost my brother Robin, please no no no ..... I arrived in JHB at 3am on the 24th of July and saw Larry laying asleep and "fighting" for his life. I remember thinking "nothing could be worse than losing my brother..... nothing".... 8 days later my son was diagnosed with a 6cm brain tumour! My two favorite boys both having head troubles.
So Jed and I decided that the 23rd of July 2009 was not going to be a sad day and we were going to some how make this a celebration of life. Socky Gwan (my aunt) was coming to visit and it was her birthday the day before. Funny Gwan had to stay behind as she had a slight cold. Socky Gwan is in remission from cancer which spread to her liver. Socky is our miracle. Jed and I decided to throw her a surprise birthday party. We made a huge Soccer cake, cookies, cup cakes, and loads of yummie snacks. Pastor Bokkie and Socky arrived early and we had a wonderful day. The 23rd of July 2009 was a wonderful day of love with my beautiful family. See picture!
Jed's blood counts were low - too low for chemo so yet again we skip another week. I don't have to explain my feelings on this as I am sure you all understand that I'm nervous about the tumour growing without the chemo. I just have to believe that if the chemo is this toxic the cancer must be having a hard time. I have to monitor my son very closely as his red cell count is at a dangerous 7.5 - the red cells carry oxygen. We take it day by day and if need be hour by hour. He has also been vomiting which is confusing me as the chemo is on hold. I do know that the side effect of his tumour was vomiting. I'm trying not to dwell on negative thoughts (this is taking loads of energy).
Jed's weight has dropped by 600 grams - he is back at 18.1 kgs. It takes me a full week to build up 100 grams but he can loose 600 grams in a week. I went looking for food supplements without more than the RDA nutrition (due to his treatment) and every dam item at dischem was about weight loss. I tell you there are too many fatties on this planet. You buy cheese and the heading says LOW FAT - yoghurt LOW FAT - I search my butt off for FULL FAT and HIGH KILO JULES. I'm trying not to stress about the weight loss - Jed had a active week last week.
I'd like to end my weekly mail on a lighter note. Jed's facebook site hit over 1000 members this week. I don't know 1000 people and although my friends and family were eager to join, it was amazing to realise the response on his "save little jed" site. I only send this mail - the facebook and blog site is the work of my Socky Aunt and mom. Anyhow I phoned my mom and said that I just could not believe how many people had joined the site. I was so grateful for the response as in my heart I hope it means they are praying for my baby. Anyhow my mother lets me in on her secret. She has been going on the site "Are you interested" - it is a chat room on facebook. She puts herself "out-there" and then when the millions of men show interest - she stalks them into joining Jed's facebook site. There is honestly no limit to a mother's love. Bless you my mommy!
I ask with all my heart that we pray for Jed's counts to go up naturally without blood products, we pray for a clear MRI in two weeks and we thank God for the miracle of Socky and Larry.
A special thank you to Barbara for the platelet donation!
With love and hugs
Bon, Ray and Jed (aka The Tens)
where can I donate platelets for Jed?
ReplyDeleteHi Gillian,
ReplyDeletePlease mail me at Bonita.Suckling@gmail.com. Let me know your blood group and area that you live or work.
God Bless
Love Bon and Jed