22 June 2009
Hi Jed10 supporters,
So much news this week - will try keep my therapy session short....
First and most important chemo and blood results: Haemoglobin/Red Cell count was VERY low at 7.4 (Normal 11- 15); White cells also very low at 1 (normal 5 - 15) and platelets were 98, which is low but I was very surprised by this one (Normal 200 - 450). Jed needed a blood transfusion - the red cells carry oxygen so this explains why little Jed was very breathless after doing a little exercise and very pale, even his lips were snow white. With counts this low we are very much in isolation and Granny's are back to wearing masks! It is really ikkie living like this. We have decided to do direct donor blood - blood holds for 30 days so we need to pay for it to be processed and stored. I believe it costs around R2500 (we are okay for money and if we use the blood the medical aid does pay most of it!). Ray will do the donation after he has done his platelets. Ray is doing platelets this Thursday and then he will do the blood 3 weeks later. Jed's transfusion should hold that long. Platelets are fully covered by the medical aid as if Jed does not use them they go to another child... where (for whatever reason) it does not work the same with blood... I will find out more.... this is all so new and i'm learning daily!
Jed is eating today and playing - so the blood has given him the much needed boost! We call the blood "gummy berry juice" so he is bouncing around coz he had lots and lots of "gummy Bewwy duice" and it took ages (4 hours to do a blood transfusion - platelets only take an hour)...
I did my platelets donation on Thursday knowing full well that Jed would not use them. I've got really good at knowing what Jed will need; as in Platelets, Blood or Neupogen.. I knew he would need Blood... anyhow all went well, I did faint but it was over very quickly and the team took good care of me. My blood pressure was really low at 70/50 and it was actually at 90/60 when I started so it took some nagging to allow them to put me on the machine. I have booked for 4 weeks time and I'm looking forward to helping Jed or another child. The day after my donation I felt really good. I believe that I fainted mainly due to anxiety from being away from Jed for so long and my poor diet plan!!... Remember Andre had NO SIDE PROBLEMS!! Think of what Jed goes through EVERY WEEKEND!!!! Nag nag nag nag.....
Jed's hair started to fall out like crazy last week, it was a HELLO REALITY CHECK for me - I decided to cut it really short to avoid the patchy look.. I cut on a No 3 and he is looking super cute. I was actually told that Jed's hair won't fall out with his treatment plan but the doctor says all kids react differently. I don't mind his little head being bald it is just I don't need another in your face reminder! - See our cute Jed10 with his new hair-do!
Jed weight is up by 100 grams - he was 18.1 kgs, but yet again there was a build up of pooh, it was 3 days since the last time his tummy worked. If I give him the med's for constipation he gets the runs so I'm still working out the perfect dosage. His tummy has worked today for the first time so I might have it right. Can't do too much meds, bum eina, can't do too little, doesn't work, pooh goes hard, bum tears, from lining being weak from chemo - bleeding butt is not fun for anyone.
Andre and Janet Beaud welcomed baby Nicolas on Friday night. Ray looked after Jed and I went through to meet the little man, he is gorgeous and so perfect. Janet is doing very well. Nicolas was born at 2.4 kgs. I sat holding him and thinking of Jed when he was born, the dreams we have for our children..... that I still have, and that I hold onto all the time..Lord heal my baby please!
My sister, Lulu (Shelly), sent an article to "Your Baby" and it was published in the letter section in the July Issue on Page 8, it is actually what I wrote for the blog. Thanks Lulu, you never stop amazing me with your constant dedication. I see your next mission is trying to get Ben 10 to make a private visit with Jed. I love you Lulu!
Happy Father's day to all the daddy's out there, remember how precious life is and how blessed we are to have our wonderful children. Dad, to you I say Happy Father's Day and although you can't speak about what is happening I somehow understand... no words are okay daddy.... just know I love you!
Ray, you are the greatest dad!!! Thank you for dedicating every single weekend to chemo, for cleaning vomit/pooh with me, for holding Jed's hand and keeping him happy through the craziness we face... thank you also for taking us into your home and supporting us! Thank you for playing Ninja Turtles on PS2 over and over until it drives you nuts whilst pretending it is the greatest game on earth; thank you for sword fighting before you have even sat down every night; thank you for playing doctor/doctor (a game that Jed is way too good at) .... Thank you for being my friend after all we have been through.... You are the WORLD'S GREATEST DADDY!!!
And..lastly, please pray for Jed, Braidy (who has brain surgery on Wed, we are fasting on Tuesday for him), Larry (my brother), Erich (also a Pilyomyxoid, that he regains the use of his leg and arm soon!!!!) and Jordy (he has chemo on Friday again)!
With lots of love
Bon, Ray and Jed x x x
So much news this week - will try keep my therapy session short....
First and most important chemo and blood results: Haemoglobin/Red Cell count was VERY low at 7.4 (Normal 11- 15); White cells also very low at 1 (normal 5 - 15) and platelets were 98, which is low but I was very surprised by this one (Normal 200 - 450). Jed needed a blood transfusion - the red cells carry oxygen so this explains why little Jed was very breathless after doing a little exercise and very pale, even his lips were snow white. With counts this low we are very much in isolation and Granny's are back to wearing masks! It is really ikkie living like this. We have decided to do direct donor blood - blood holds for 30 days so we need to pay for it to be processed and stored. I believe it costs around R2500 (we are okay for money and if we use the blood the medical aid does pay most of it!). Ray will do the donation after he has done his platelets. Ray is doing platelets this Thursday and then he will do the blood 3 weeks later. Jed's transfusion should hold that long. Platelets are fully covered by the medical aid as if Jed does not use them they go to another child... where (for whatever reason) it does not work the same with blood... I will find out more.... this is all so new and i'm learning daily!
Jed is eating today and playing - so the blood has given him the much needed boost! We call the blood "gummy berry juice" so he is bouncing around coz he had lots and lots of "gummy Bewwy duice" and it took ages (4 hours to do a blood transfusion - platelets only take an hour)...
I did my platelets donation on Thursday knowing full well that Jed would not use them. I've got really good at knowing what Jed will need; as in Platelets, Blood or Neupogen.. I knew he would need Blood... anyhow all went well, I did faint but it was over very quickly and the team took good care of me. My blood pressure was really low at 70/50 and it was actually at 90/60 when I started so it took some nagging to allow them to put me on the machine. I have booked for 4 weeks time and I'm looking forward to helping Jed or another child. The day after my donation I felt really good. I believe that I fainted mainly due to anxiety from being away from Jed for so long and my poor diet plan!!... Remember Andre had NO SIDE PROBLEMS!! Think of what Jed goes through EVERY WEEKEND!!!! Nag nag nag nag.....
Jed's hair started to fall out like crazy last week, it was a HELLO REALITY CHECK for me - I decided to cut it really short to avoid the patchy look.. I cut on a No 3 and he is looking super cute. I was actually told that Jed's hair won't fall out with his treatment plan but the doctor says all kids react differently. I don't mind his little head being bald it is just I don't need another in your face reminder! - See our cute Jed10 with his new hair-do!
Jed weight is up by 100 grams - he was 18.1 kgs, but yet again there was a build up of pooh, it was 3 days since the last time his tummy worked. If I give him the med's for constipation he gets the runs so I'm still working out the perfect dosage. His tummy has worked today for the first time so I might have it right. Can't do too much meds, bum eina, can't do too little, doesn't work, pooh goes hard, bum tears, from lining being weak from chemo - bleeding butt is not fun for anyone.
Andre and Janet Beaud welcomed baby Nicolas on Friday night. Ray looked after Jed and I went through to meet the little man, he is gorgeous and so perfect. Janet is doing very well. Nicolas was born at 2.4 kgs. I sat holding him and thinking of Jed when he was born, the dreams we have for our children..... that I still have, and that I hold onto all the time..Lord heal my baby please!
My sister, Lulu (Shelly), sent an article to "Your Baby" and it was published in the letter section in the July Issue on Page 8, it is actually what I wrote for the blog. Thanks Lulu, you never stop amazing me with your constant dedication. I see your next mission is trying to get Ben 10 to make a private visit with Jed. I love you Lulu!
Happy Father's day to all the daddy's out there, remember how precious life is and how blessed we are to have our wonderful children. Dad, to you I say Happy Father's Day and although you can't speak about what is happening I somehow understand... no words are okay daddy.... just know I love you!
Ray, you are the greatest dad!!! Thank you for dedicating every single weekend to chemo, for cleaning vomit/pooh with me, for holding Jed's hand and keeping him happy through the craziness we face... thank you also for taking us into your home and supporting us! Thank you for playing Ninja Turtles on PS2 over and over until it drives you nuts whilst pretending it is the greatest game on earth; thank you for sword fighting before you have even sat down every night; thank you for playing doctor/doctor (a game that Jed is way too good at) .... Thank you for being my friend after all we have been through.... You are the WORLD'S GREATEST DADDY!!!
And..lastly, please pray for Jed, Braidy (who has brain surgery on Wed, we are fasting on Tuesday for him), Larry (my brother), Erich (also a Pilyomyxoid, that he regains the use of his leg and arm soon!!!!) and Jordy (he has chemo on Friday again)!
With lots of love
Bon, Ray and Jed x x x
A great update Mr Jed10
ReplyDeleteJust discovered your blog and want to let you know that I will keep you in my prayers and thoughts!!!
ReplyDeleteMy daughter Bianca was almost 4 when she was diagnosed with leukemia and now 2 years later we are around 2 months away from end of treatment.
The journey is long, can feel lonely, but at some point you will look and realise how far you've come. Just take one step at a time and one day at a time.
Lea White (Bianca's mum)
http://whitesinnz.blogspot.com
Little Jed so great to see you happy.We are wishing we could celebrate with you.Jason my son likes Ben 10 too,he is 6 years old and prays for you often.
ReplyDelete