20 January 2016
Back to Pretoria for our next appointment today. SHS serum. Her white cell Count is a little low today so Jason will be giving Simone Neupogen Shots to help boost her White Cell Count. We received Simone's Bone Marrow Biopsy results back all is CLEAR!!! Cause for celebration...
We also heard from the Dr that her Bone Marrow is 100% Male which means the donor Bone Marrow has taken over which is a good thing, this is what needs to happen! Simone's chest has started feeling but we were told this is normal, her feeling is very mild but this is all part of the process. We have noticed other people with the same thing, and there's is a little worse than Simone.
She is making new skin... This is quote unusual for us. It is amazing what we learn everyday...
Friday, July 15, 2016
Thursday, July 14, 2016
13 January 2016
Doctors visit today again. Simone had to draw extra blood for the Chimera Test they have to do. This test shows how her blood is handling the new bone marrow. It takes a few weeks before it comes back. But Dr Brittain will let us know as soon as he has the results. They still clean her J- Line every week when we go through, this is compulsory to keep out any infections. The most painful part in cleaning the J Line is getting the plasters off.... it hurts like H.... Simone says... And I can believe it just by watching her face. Not a pleasant experience.She had her next session with the SHS serum two bottle later and we are almost ready to go home. The only thing with the Serum is it makes her nauseous. She battles to eat which isn't great as she cant afford to lose too much weight. Eating like a bird
Blood test today:Haemaglobin 10.8
Platelets 280
White Cell Count 1.9
Neutrophils 1.3
Had to do another Bone Marrow Biopsy to make sure all the Cancer is still in remission. This is very painful for Simone as she cant move around on her own too painful to pull herself out of bed.
Also received a great gift today - Sister Velna gave Simone a letter from her German Donor... So exciting the only thing is we can only communicate through the Registry but cant meet for 5 Years. Cant wait for the day that Simone and her Donor can meet.
13 January 2016
Doctors visit today again. Simone had to draw extra blood for the Chimera Test they have to do. This test shows how her blood is handling the new bone marrow. It takes a few weeks before it comes back. But Dr Brittain will let us know as soon as he has the results. They still clean her J- Line every week when we go through, this is compulsory to keep out any infections. The most painful part in cleaning the J Line is getting the plasters off.... it hurts like H.... Simone says... And I can believe it just by watching her face. Not a pleasant experience.
She had her next session with the SHS serum two bottle later and we are almost ready to go home. The only thing with the Serum is it makes her nauseous. She battles to eat which isn't great as she cant afford to lose too much weight. Eating like a bird
Blood test today:
Haemaglobin 10.8
Platelets 280
White Cell Count 1.9
Neutrophils 1.3
Had to do another Bone Marrow Biopsy to make sure all the Cancer is still in remission. This is very painful for Simone as she cant move around on her own too painful to pull herself out of bed.
Also received a great gift today - Sister Velna gave Simone a letter from her German Donor... So exciting the only thing is we can only communicate through the Registry but cant meet for 5 Years. Cant wait for the day that Simone and her Donor can meet.
6 January 2016
Through to Pretoria to see Doctor. Drawn blood when we arrived.
Haemaglobin 9.9
White Cell Count 1.86
Platelets 327
Lymphocites 0.13
Neutrophils 1.29
Crp 1
Kidney function has improved, we are very happy about that.
All good Dr is very happy with her progress.
Took a drive back to the river for the last few days before Cole has to go back to school. Raining on and off but it is lovely to be back.
3 January 2016
We went to the Nel's for lunch today, thank you to oUma Nel Paul's Mom for the greta work she did putting the blanket together.... All everyone's hard work in making all those beautiful squares. Simone really appreciates all your beautiful work. The blanket is so much bigger than any of us could have imagined.... it is more like a queen size blanket than a little Single Bed Blanket. And Ouma managed to make a pillow case too!!! Wow it is just so special.
Thank you again to all of your amazing people!!!
Simone had some other Special visitors at the lodge over the holidays too... The Vieira Family came to visit what a wonderful weekend it was.
30 December 2015
We received the go ahead from the Dr to go out to the River for the New Years weekend....!!!!
WooHoo!!!
We are all so excited to be going out there.
Simone had to have blood drawn today. Blood is still looking good, just two of her medications are toxic to her body, so her Dr has taken them away for now.
Haemaglobin 10.1
White Cell COunt 2.74
Plate;ets 239
Lymphocites 0.15
Neutrophils 1.99
Kidney Function 141 (it was 150 last week, its coming down!!)
Crp - 4 Yeah its below 5 where it needs to be.
Great to be at the River relaxing...
23 December 2015
We had to be in Pretoria early today 08H00 as Simone is going to have her second treatment of SHS Serum, since leaving the hospital. Her counts were looking good too.Haemaglobin 11.4
Red Cell Count 4.25
White Cell Count 3.06
Platelets 291
Neutrophils 1.86
Lymphocites 0.25
CRP - Infection count 9 (35 when we left Hospital)
Her Kidney function has increased this is due to the Prograf medication she is on not good but the Dr's have it all under control. 157 (49 - 90)
The Dr explained to us that it takes the Lymphocites about a year to grow.
Simone will be on the SHS serum for the next 12 weeks this helps her stem cells to grow.
17 December 2 015
Simone didn't have such a great night sleep.. A lot of pain in her shoulder Clavicle and flushes all night. We decided to give Dr Augustyn a call in the morning to see what it could possibly be. He recommended that we come through to Pretoria to do some Xrays to make ssure there is no clots or to see if her J-line hasn't moved.
After taking X rays we went back to see the Dr, he checked her X Rays all in order it might just be some air moving around the pipe. But it should work its ways out in a couple days. We on our way back to Jhb!!! YEAH!!!!
Simone didn't have such a great night sleep.. A lot of pain in her shoulder Clavicle and flushes all night. We decided to give Dr Augustyn a call in the morning to see what it could possibly be. He recommended that we come through to Pretoria to do some Xrays to make ssure there is no clots or to see if her J-line hasn't moved.
After taking X rays we went back to see the Dr, he checked her X Rays all in order it might just be some air moving around the pipe. But it should work its ways out in a couple days. We on our way back to Jhb!!! YEAH!!!!
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