24th May 2009
Dearest Jed10 supporters,
Hell, did we get a shock - Jed's platelets dropped to 18 - aaaaaaaaaaaaaaaaaaaaaaaaaa - I knew they would have dropped but was shocked by how much they dropped by. The Unitas team worked non stop to get donor platelets for Jed but once again, we had to sit waiting on the list for our platelets. "Lucky" for us Jed's platelets were the lowest so he was first on the list. I am going to research this week on how a donor system will work. So far I know that Platelets last 5 days from day of donation; so the donor would need to be available on a Wed/Thurs (then 24 hours to process). We are going to need a lot of platelets over the next 81 weeks and I am going to ask that if you are interested in helping Jed to please contact me via e-mail (please think nicely about this commitment - you know like in all areas of your life #**@). As far as I understand you would need to be 0 positive blood group. You would need to take a half day off work as the process takes 2 hours and you can only donate once a month. Ray is not able to donate as he has been on aspirin in the last couple of weeks and I'm drugged up to my eyeballs on anti-depressants. I will let you know more as soon as I have met with the clinic.
The rest of the blood tests didn't look good... white cells at 1 (normal 5-15.00), and red cells at 8.8 (11.0 - 14.0) - Jed's doctor decided to hold off on the blood transfusion. His words were, let us protect him from blood products for as long as possible.
Jed lost another 200 grams this week. If anyone cares I gained 1.4kgs this week - due to eating Jed's scraps to avoid food waste. I started sobbing at the sight of the scale... (when Jed was standing on it).... I am now the most determined force feeder on the planet. I am doing a star chart and a good boy eating reward system. If Jed eats he gets a star, if he doesn't he gets a sad face - when the week is up I will buy him a dream toy if he gains weight. Nothing like getting him obsessed with the scale, hell it has done me no harm in 35 years...
Thank you to everyone who sms'd me on Saturday morning, it was such a nice surprise... people were thinking of us at chemo... it just made me feel so special. Next week Saturday is the big boy Chemo-Carboplatin at 550mg - this one scares me as I remember the way my baby looked after this. It is a massive and harsh chemo so please keep Jed in your prayers big time!
Jed is still doing well, he remains an inspiration to me, he is so happy and positive all the time, if he would eat I honestly believe he'd be given Saint Hood!
Jordi starts his new chemo on Monday and Michelle is also having a difficult time with his eating. Please keep her and Jordi in your prayers.
We thank God for Jed and continue to pray for our miracle.
With lots of love
Bon and Ray
Hell, did we get a shock - Jed's platelets dropped to 18 - aaaaaaaaaaaaaaaaaaaaaaaaaa - I knew they would have dropped but was shocked by how much they dropped by. The Unitas team worked non stop to get donor platelets for Jed but once again, we had to sit waiting on the list for our platelets. "Lucky" for us Jed's platelets were the lowest so he was first on the list. I am going to research this week on how a donor system will work. So far I know that Platelets last 5 days from day of donation; so the donor would need to be available on a Wed/Thurs (then 24 hours to process). We are going to need a lot of platelets over the next 81 weeks and I am going to ask that if you are interested in helping Jed to please contact me via e-mail (please think nicely about this commitment - you know like in all areas of your life #**@). As far as I understand you would need to be 0 positive blood group. You would need to take a half day off work as the process takes 2 hours and you can only donate once a month. Ray is not able to donate as he has been on aspirin in the last couple of weeks and I'm drugged up to my eyeballs on anti-depressants. I will let you know more as soon as I have met with the clinic.
The rest of the blood tests didn't look good... white cells at 1 (normal 5-15.00), and red cells at 8.8 (11.0 - 14.0) - Jed's doctor decided to hold off on the blood transfusion. His words were, let us protect him from blood products for as long as possible.
Jed lost another 200 grams this week. If anyone cares I gained 1.4kgs this week - due to eating Jed's scraps to avoid food waste. I started sobbing at the sight of the scale... (when Jed was standing on it).... I am now the most determined force feeder on the planet. I am doing a star chart and a good boy eating reward system. If Jed eats he gets a star, if he doesn't he gets a sad face - when the week is up I will buy him a dream toy if he gains weight. Nothing like getting him obsessed with the scale, hell it has done me no harm in 35 years...
Thank you to everyone who sms'd me on Saturday morning, it was such a nice surprise... people were thinking of us at chemo... it just made me feel so special. Next week Saturday is the big boy Chemo-Carboplatin at 550mg - this one scares me as I remember the way my baby looked after this. It is a massive and harsh chemo so please keep Jed in your prayers big time!
Jed is still doing well, he remains an inspiration to me, he is so happy and positive all the time, if he would eat I honestly believe he'd be given Saint Hood!
Jordi starts his new chemo on Monday and Michelle is also having a difficult time with his eating. Please keep her and Jordi in your prayers.
We thank God for Jed and continue to pray for our miracle.
With lots of love
Bon and Ray
Ok...so where do I start...insight to what we went through is what I can give you. The reason we went to the hospital to begin with for David was 1. because of his weight and 2. because of his eyes. It turned out that the tumour sat on his hypothalamus (which controls a lot of things, but particularly your appetite) and his optic nerves, which David ended up losing his sight because of. Anyway, because his brain was basically being told that he wasn't hungry, so in turn he refused to eat. He'd drink but wouldn't eat. Try feeding a 15 month old that just won't eat...HARD STUFF!! Anyway, they ended up inserting a NG tube (Nasal Gastro tube) and he was fed Pedisure through the tube that went straight to his stomach. After a while (the tube kept coming out) David ended up getting a G-tube (Gastrointestinal Tube)surgically placed in him, which was a bit more discret then a tube taped to his precious face. The G-tube was hidden beneathe his clothing...which was nice...anyway...options options options....something to think about...food for thought...
ReplyDeleteI wish you guys much luck with the blood counts, and so forth...I hope that the Carboplatin works for Jed!! My fingers are crossed...you know where I am if you need to chat...much love..
Angel David Ray Fredas Mom...
Sandra Freda
Dear Bonni,
ReplyDeleteI am thinking of you all.My heart goes out to you,and I cannot imagine what it is like.All I do know being mother is that,I know how much we love our children and just want the best for them!
I am a phone call away and if there is anything I can do to help I would love to do it.Maybe a cuppa tea??Love
Natalie Newell & Matt - natalien@netstar.altech.co.za