Hi there,
I know if I don't write this on Monday my Jed10 supporters start to worry.
I have WONDERFUL news..... Jed handled the chemo VERY well. The doctor was concerned that the Carboplatin was actually just too toxic for Jed's little body so he reduced the dose. This will give Jed's body time to recover from his infection. As time goes the doctor will increase the dose but hopefully by then Jed's body will be able to handle the full dose of Carboplatin and Vincristine. His treatment plan is week 1 (Carboplatin and Vincristine - aka BIG CHEMO) then 2 weeks of Vincristine only, then week 4 (Carboplatin and Vincristine - BIG CHEMO) then again 2 weeks of Vincristine only,..... the cycle continues for 81 weeks with a break on weeks 13, 17 and 21. Cycles start in week 25, 31, 37, 43, 49, 55, 61, 73 and 79. So we have done 4 weeks of chemo. The side effects of Jed's chemo are; Carboplatin - Bone Marrow Suppression (this is why he always needs blood or platelets), Nausea and vomiting (and boy does he suffer with this one!!!); Vincristine-causes constipation (hence the infection), hair loss (already started), pain in the jaw (not complained of this), tingling fingers and weak ankles (this is also why he sometimes doesn't walk well).
and the best news is.... that Jed gained 200 grams last week and is now 17.8 kgs. I give... me me me all the credit for this, I have made more picnics, clown faced bread and yum yum milkshakes then ever before. I am still acting as the dustbin and therefore keeping my weight at a very healthy state! Jed has done brilliant considering he never ate for 6 whole days when the infection was present. The NG tube will go in if he gets to 17.6 kgs again, it is therefore imperative to keep his weight up. He can't tolerate the chemo without his body having some nutrition. I meet the dietitian on Saturday again to discuss more food ideas - our goal is 20 kgs at 107cm tall. She has been a wonderful support.
Today, Jed is doing very well, he is up and playing which fills my heart with happiness and takes the edge off the last couple of weeks. They had to give him bone marrow meds which hurt all of his joints so for a couple of days he could hardly walk... that was heart breaking to see.
Andre Beaud has made his appointment to make his platelet donation for Jed. He goes in on Thursday morning. I have had my results - my count is 347 000 so I will be donating on the 18th of June and then Ray on the 25th of June, his results are 253 000. My friend's husband (Trevor) will be donating on the 2nd of July - so at this stage we are only a couple short of meeting the quota. It is a long process and takes a huge commitment. I will be forwarding out a mail on the process soon and I can only plead with you that you read it and maybe make a decision to do it for Jed or for another child. If only I knew sooner; what an honor to have your platelets save a life of a cancer child or adult. I would give my life to save a cancer child (any ONE of them) and all they are asking is for some of our platelets...... please! I apologise for not doing the mail sooner but I have done some research and I don't wanna send out incorrect information and cause frustrations. I am currently typing out the list of no no medication that you need to avoid before your donation week.
I thank you for your prayers for Jed and for the beautiful messages and words of encouragement I have received.
With lots of love
Bon, Ray and Jed x x x
"In God we Trust"
I know if I don't write this on Monday my Jed10 supporters start to worry.
I have WONDERFUL news..... Jed handled the chemo VERY well. The doctor was concerned that the Carboplatin was actually just too toxic for Jed's little body so he reduced the dose. This will give Jed's body time to recover from his infection. As time goes the doctor will increase the dose but hopefully by then Jed's body will be able to handle the full dose of Carboplatin and Vincristine. His treatment plan is week 1 (Carboplatin and Vincristine - aka BIG CHEMO) then 2 weeks of Vincristine only, then week 4 (Carboplatin and Vincristine - BIG CHEMO) then again 2 weeks of Vincristine only,..... the cycle continues for 81 weeks with a break on weeks 13, 17 and 21. Cycles start in week 25, 31, 37, 43, 49, 55, 61, 73 and 79. So we have done 4 weeks of chemo. The side effects of Jed's chemo are; Carboplatin - Bone Marrow Suppression (this is why he always needs blood or platelets), Nausea and vomiting (and boy does he suffer with this one!!!); Vincristine-causes constipation (hence the infection), hair loss (already started), pain in the jaw (not complained of this), tingling fingers and weak ankles (this is also why he sometimes doesn't walk well).
and the best news is.... that Jed gained 200 grams last week and is now 17.8 kgs. I give... me me me all the credit for this, I have made more picnics, clown faced bread and yum yum milkshakes then ever before. I am still acting as the dustbin and therefore keeping my weight at a very healthy state! Jed has done brilliant considering he never ate for 6 whole days when the infection was present. The NG tube will go in if he gets to 17.6 kgs again, it is therefore imperative to keep his weight up. He can't tolerate the chemo without his body having some nutrition. I meet the dietitian on Saturday again to discuss more food ideas - our goal is 20 kgs at 107cm tall. She has been a wonderful support.
Today, Jed is doing very well, he is up and playing which fills my heart with happiness and takes the edge off the last couple of weeks. They had to give him bone marrow meds which hurt all of his joints so for a couple of days he could hardly walk... that was heart breaking to see.
Andre Beaud has made his appointment to make his platelet donation for Jed. He goes in on Thursday morning. I have had my results - my count is 347 000 so I will be donating on the 18th of June and then Ray on the 25th of June, his results are 253 000. My friend's husband (Trevor) will be donating on the 2nd of July - so at this stage we are only a couple short of meeting the quota. It is a long process and takes a huge commitment. I will be forwarding out a mail on the process soon and I can only plead with you that you read it and maybe make a decision to do it for Jed or for another child. If only I knew sooner; what an honor to have your platelets save a life of a cancer child or adult. I would give my life to save a cancer child (any ONE of them) and all they are asking is for some of our platelets...... please! I apologise for not doing the mail sooner but I have done some research and I don't wanna send out incorrect information and cause frustrations. I am currently typing out the list of no no medication that you need to avoid before your donation week.
I thank you for your prayers for Jed and for the beautiful messages and words of encouragement I have received.
With lots of love
Bon, Ray and Jed x x x
"In God we Trust"
Will you please mail me as well? erdnak@gmail.com
ReplyDeleteWhat exactly is platelets????
Every morning when I wake up I say a prayer for you.Jesus loves you Little Jed
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