18th October 2009
Hi there,
On Friday my mom and I took Jed for blood tests.
He started bleeding from his nose and mouth. I was calm when it first happened but when the blood started pouring out of his nose and mouth we decided it was time to take him to the hospital. Blood tests showed that the HB counts were low and his platelets were at 32. We arrived at 11am and knowing that my donor platelets were not going to be ready till Saturday (thanks Barbara my special friend) I was very nervous about how long we would have to wait, knowing there is a shortage of platelets and that Jeddy was losing blood. Lucky for us they arrived at 15h00 and they were transfused successfully and I was able to take Jed home for the evening.
So no hospital visit was needed on Saturday as all counts were done. I will keep monitoring him as I am concerned about the low HB count.
I went with Michelle and Jordi to see a surgeon on Wednesday to determine if there is anything that can be done for Jordi to make him mobile. The doctor explained that a series of operations would be required to enable Jordi to stand and walk. He told Michelle that Jordi would never play sport or run around like a "normal" little boy. Michelle was heart broken... she has however but her faith back in God and is now working extra hard to build up Jordi's feet with the help of a Physio Therapist. Surgery is on hold for the next 3 months as they work on Jordi's overall strength. If God can heal a tumour wrapped around Jordi's entire lower spine, then getting him to walk is no big deal for the Big Guy!
I saw Reef briefly on Saturday. Lydia was allowed to bring him out for a couple of minutes. He is swollen and bloated - he looked very uncomfortable but all of this is part of his bone marrow transplant process. I was allowed to kiss his little foot which was blue from the low oxygen levels. Please keep this little man in your prayers. He has a wonderful mommy and daddy waiting to watch him grow up!
Jed has started doing Physio in the pool with Teacher Fiona and he is loving it. She is working on increasing his muscle tone and getting him stronger. It is such a pleasure watching him splash around in the pool. He is very good and seems to be having so much fun. Vusi and I sit and watch his every splash - it lasts about 30 mins and we go on a Tuesday and Thursday. I'm hoping Jed will be strong enough for this Tuesday so please keep him in your prayers. Fiona commented that the right side weakness is not at all noticeable and it was the BEST compliment "I" have received in a long time. Let us hope as he gets stronger his little hands shake less and there is zero damage from radiation and surgery! See the picture attached of my brilliant son!
I have been advised to take him for OT and some more play therapy - it is on this week's "to do" list - please pray I find the right people that Jed will enjoy working with.
Hope you all have a great week and thank you for the continued love and support.
Love
Ray, Bon and Vusi
dx August 2008 JPA (cerebellar hemisphere - left)
Brain Operation (8 hours)
January 2009
Brain Operation (9 hours)
February
MRI showed cancer was back and at 3 cm (3 nodules visible)
31 Radiation session with temador chemo
August 2009 Appendix Burst
Emergency surgery
Currently on Vincristine/Carbo protocol at Unitas in Pretoria
at last MRI the tumour was stable with no clear nodules - our first miracle!
"In God we Trust"
On Friday my mom and I took Jed for blood tests.
He started bleeding from his nose and mouth. I was calm when it first happened but when the blood started pouring out of his nose and mouth we decided it was time to take him to the hospital. Blood tests showed that the HB counts were low and his platelets were at 32. We arrived at 11am and knowing that my donor platelets were not going to be ready till Saturday (thanks Barbara my special friend) I was very nervous about how long we would have to wait, knowing there is a shortage of platelets and that Jeddy was losing blood. Lucky for us they arrived at 15h00 and they were transfused successfully and I was able to take Jed home for the evening.
So no hospital visit was needed on Saturday as all counts were done. I will keep monitoring him as I am concerned about the low HB count.
I went with Michelle and Jordi to see a surgeon on Wednesday to determine if there is anything that can be done for Jordi to make him mobile. The doctor explained that a series of operations would be required to enable Jordi to stand and walk. He told Michelle that Jordi would never play sport or run around like a "normal" little boy. Michelle was heart broken... she has however but her faith back in God and is now working extra hard to build up Jordi's feet with the help of a Physio Therapist. Surgery is on hold for the next 3 months as they work on Jordi's overall strength. If God can heal a tumour wrapped around Jordi's entire lower spine, then getting him to walk is no big deal for the Big Guy!
I saw Reef briefly on Saturday. Lydia was allowed to bring him out for a couple of minutes. He is swollen and bloated - he looked very uncomfortable but all of this is part of his bone marrow transplant process. I was allowed to kiss his little foot which was blue from the low oxygen levels. Please keep this little man in your prayers. He has a wonderful mommy and daddy waiting to watch him grow up!
Jed has started doing Physio in the pool with Teacher Fiona and he is loving it. She is working on increasing his muscle tone and getting him stronger. It is such a pleasure watching him splash around in the pool. He is very good and seems to be having so much fun. Vusi and I sit and watch his every splash - it lasts about 30 mins and we go on a Tuesday and Thursday. I'm hoping Jed will be strong enough for this Tuesday so please keep him in your prayers. Fiona commented that the right side weakness is not at all noticeable and it was the BEST compliment "I" have received in a long time. Let us hope as he gets stronger his little hands shake less and there is zero damage from radiation and surgery! See the picture attached of my brilliant son!
I have been advised to take him for OT and some more play therapy - it is on this week's "to do" list - please pray I find the right people that Jed will enjoy working with.
Hope you all have a great week and thank you for the continued love and support.
Love
Ray, Bon and Vusi
dx August 2008 JPA (cerebellar hemisphere - left)
Brain Operation (8 hours)
January 2009
Brain Operation (9 hours)
February
MRI showed cancer was back and at 3 cm (3 nodules visible)
31 Radiation session with temador chemo
August 2009 Appendix Burst
Emergency surgery
Currently on Vincristine/Carbo protocol at Unitas in Pretoria
at last MRI the tumour was stable with no clear nodules - our first miracle!
"In God we Trust"
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