26th September 2009
Hi there,
I have been screaming for a break and I believe I finally have got one. YES! We went in for chemo on Saturday and Dr Reynders decided that Jed's platelet counts were just too low to go ahead with the Vincristine/Carbo chemo. Red cells were in the normal range at 11.5 this is largely due his blood transfusion last week but also explains his energy levels and fantastic mood; his white cells are just below normal range at 4.64 - higher than ever. The main concern is his platelets at 66. Generally we don't give chemo unless the platelet count is above 75. We had platelets available (thank you Barbara) but the doctor explained that Jed's bone marrow could become lazy and that "it" needed to work to get the platelets up without a transfusion. Now the up side to all this information is I HAVE A HEALTHY LITTLE MAN who is chemo free for a week. - there is a down side to no chemo but for this week I refuse to focus on that... I want to enjoy my son!
With this.... it means our isolation is not as strict; so we went off for a day in the sun and loads of fun at Jordi's house!!. We had a fantastic Sunday and one that will go down as one of my favorite days ever. The weather was perfect and the food was delicious. Ray and Wayne made a braai, while I swam with my little man. Jordi had two other friends over and it was amazing watching Jed interact with them. In fact, Nobi (one of the friends) is coming for a "sleep over" tonight. Jed is so excited. The simple things I once took for granted, like my boy playing with other kids..... I'm more excited about the sleep over than the kids!!! I have plans to make tents, a picnic, TV games etc etc!!! Attached is Jed and Nobi having a swim at Aunty Shell!
On Wednesday at 15h15 I finally get to see Dr Sneakers (spell??) at Milpark. I have been told over and over that this is the best neurosurgeon in SA. It has taken 4 long months of waiting to see him. i want to show him Jed's latest MRI scans and discuss what he thinks of the tumour location and surgery options (IT IS JUST A DISCUSSION) - at some point it may be a discussion Ray and I will have to re-open and I want to ensure I have the best on hand, who is well informed and willing to take Jed as a patient. I however, don't want a surgeon operating on a tumour I want him operating on Jed; the boy; the little man; my son and if I feel that he is in fact cold and distant we will return to Dr Weinburg. Treat the child not the cancer! Make sense??? To me it does.....
Jed has not complained much about abdominal pain lately... please keep praying that the blockage has just healed by the power of positive thinking and God!
Now onto a serious note, one of Jed's friends Siyabonga has been sent off to ICU. I phoned the ICU unit about 5 mins ago to find out how this precious little man is doing and I was told that he is slightly better than yesterday. The information is limited from ICU as I am not family (although I spend more time with the onco kids than my own family, aaaaaaaaaa)... This however does not mean that Siya is out of the woods, he still needs our prayers. If an oncology child goes to ICU they sometimes don't come back...... and pneumonia is taken very seriously if you don't have a strong immune system. I understand his mommies fears and I wish there was some way I could help her ...but the truth is if it was me sitting on that ICU blue chair I'd want everyone to pray.... so I hope that by asking you to pray for him - I am somehow helping her.... He is in my prayers today big time.
As always remember the J's - Jed, Jordi, Jaryd, Jono and our Reef, Lefa, Siya, Rene, Darian.... and every child and adult effected by cancer. Pray for a cure, pray for healing and pray for the parents!
Special prayers for Bob (Pattern Gwan's boyfriend) with cancer - he too is not doing well!
In God we Trust
Love and gentle hugs
I have been screaming for a break and I believe I finally have got one. YES! We went in for chemo on Saturday and Dr Reynders decided that Jed's platelet counts were just too low to go ahead with the Vincristine/Carbo chemo. Red cells were in the normal range at 11.5 this is largely due his blood transfusion last week but also explains his energy levels and fantastic mood; his white cells are just below normal range at 4.64 - higher than ever. The main concern is his platelets at 66. Generally we don't give chemo unless the platelet count is above 75. We had platelets available (thank you Barbara) but the doctor explained that Jed's bone marrow could become lazy and that "it" needed to work to get the platelets up without a transfusion. Now the up side to all this information is I HAVE A HEALTHY LITTLE MAN who is chemo free for a week. - there is a down side to no chemo but for this week I refuse to focus on that... I want to enjoy my son!
With this.... it means our isolation is not as strict; so we went off for a day in the sun and loads of fun at Jordi's house!!. We had a fantastic Sunday and one that will go down as one of my favorite days ever. The weather was perfect and the food was delicious. Ray and Wayne made a braai, while I swam with my little man. Jordi had two other friends over and it was amazing watching Jed interact with them. In fact, Nobi (one of the friends) is coming for a "sleep over" tonight. Jed is so excited. The simple things I once took for granted, like my boy playing with other kids..... I'm more excited about the sleep over than the kids!!! I have plans to make tents, a picnic, TV games etc etc!!! Attached is Jed and Nobi having a swim at Aunty Shell!
On Wednesday at 15h15 I finally get to see Dr Sneakers (spell??) at Milpark. I have been told over and over that this is the best neurosurgeon in SA. It has taken 4 long months of waiting to see him. i want to show him Jed's latest MRI scans and discuss what he thinks of the tumour location and surgery options (IT IS JUST A DISCUSSION) - at some point it may be a discussion Ray and I will have to re-open and I want to ensure I have the best on hand, who is well informed and willing to take Jed as a patient. I however, don't want a surgeon operating on a tumour I want him operating on Jed; the boy; the little man; my son and if I feel that he is in fact cold and distant we will return to Dr Weinburg. Treat the child not the cancer! Make sense??? To me it does.....
Jed has not complained much about abdominal pain lately... please keep praying that the blockage has just healed by the power of positive thinking and God!
Now onto a serious note, one of Jed's friends Siyabonga has been sent off to ICU. I phoned the ICU unit about 5 mins ago to find out how this precious little man is doing and I was told that he is slightly better than yesterday. The information is limited from ICU as I am not family (although I spend more time with the onco kids than my own family, aaaaaaaaaa)... This however does not mean that Siya is out of the woods, he still needs our prayers. If an oncology child goes to ICU they sometimes don't come back...... and pneumonia is taken very seriously if you don't have a strong immune system. I understand his mommies fears and I wish there was some way I could help her ...but the truth is if it was me sitting on that ICU blue chair I'd want everyone to pray.... so I hope that by asking you to pray for him - I am somehow helping her.... He is in my prayers today big time.
As always remember the J's - Jed, Jordi, Jaryd, Jono and our Reef, Lefa, Siya, Rene, Darian.... and every child and adult effected by cancer. Pray for a cure, pray for healing and pray for the parents!
Special prayers for Bob (Pattern Gwan's boyfriend) with cancer - he too is not doing well!
In God we Trust
Love and gentle hugs
Well,I think that all the people we meet are family.Your family is precious and I think Jesus loves you all so much.Have a great week ahead.We always keep you in our prayers.Sending lots of love from us in New Zealand.Leaine,Glenn,Jason(6),Ashleigh(20mths)
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