31 May 2016

Simone's Birthday Today she is so excited for her party.  Another treatment of Mabthera this Friday then she is going out to have fun at her friend Melissa's party. Then Saturday is Simone's Party..

13 May 2016

There are anti-bodies in Simone blood that are causing her blood to drop regularly.  The Dr's are going to request that they can try Mabthera on Simone.. It is a very pricy drug cost R25 000.00 per dose and she will need four doses.
Some of the side effects are hot spot (rat tail on you lower back), tightening of the chest, back pain, hot flushes, temperatures and high blood pressure.  Hectic things she has to go through....

Over the next few weeks Simone will be in and out of hospital receiving two pints of blood everytime. It is also not healthy to receive too much blood due to all the iron in the blood she is receiving.

22 April 2016

Simone received a top up on her stem cells - lymphocytes today.. Doing homework while they busy with the infusion.  Quite a procedure..

24 February 2016

Simone wants her J-line out so today it is coming out!!!! She cant wait. I took a video of Dr Brittain taking the J line out- the whole procedure is on video for Simone only to see.

17 February 2016

Simone is out of Hospital and off to Ocean Basket for her first meal out since May 2015..
We are celebrating Heather's Birthday.

9 February 2016

They drew blood today again to check the CMV Count it was 153 000 this week it is 60 939!!!
Today is the last day of the Polygam.... So Happy

Haemaglobin 9.7
Platelets 191
White Cell Count 2.63
Neutrophils 2.25
Lymphocites 0.22
CRP 2
Kidney Function 56

10 February 2016

Restless night last night.  Cymvene will be reduced.
Had to have Neupogen as her white cell count is too low.

She has to have Phenegran everytime she has the Polygam as she has reaction to it everytime.

08 February 2016

HAPPY BIRTHDAY COLE!!!!

Simone is very upset that she is at the hospital and she cant see her brother for his birthday.
Hopefully she will be home for Heather's Birthday..

4 February 2016

Dr gave us a call today CMV is not down so Simone will need to go to hospital for about a two week stay.  She will be on a High dose of Anti-Biotics - Cymevene and Polygam to help lower the CMV Count. They will continue to do checks on her throughout the days. Then next Monday they will check the CMV count again.

Her CMV count is up to 100 000 it should be below 10 000 before they will release her.  Normally it should be below 150.

Simone will be on Polygam for 5 days, she has one bottle a day. The stuff is very expensive.

6 February 2016

They started with the Polygam today, as they started Simone had a reaction so they had to stop and give her phenegram first then they could continue with the medication. 

Haemaglobin  10.0
Platelets 215
White Cell Count 2.33
CRP 3
Lymphocites 0.14
Neutrophils 2.14

3 February 2016

Blood is good today!! Yeah!!
Haemaglobin 11.3
White Cell Count 0.94
Platelets 203
Neutrophils 0.72
Lymphocites 0.09


Doctor is happy with everything but we just waiting to hear about the CMV which will come back tomorrow. Hoping all is good then we don't need to worry about hospital stay...

21 January 2016

Cytomeglavirus - CMV  has reared its ugly head unfortunately...... this is a common thing after a transplant. As the Dr explained to us that we as South Africans are all born with it, but due to Simone's donor being an international donor they do not have CMV in their bodies. Simone has to go through the process of taking tablets to clear this up.. Shouldn't take too long..

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...

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.

12 January 2016

Made arrangements with Mr Workman at Assumption for Simone as she cant go back to school till her 100 days Post Transplant are up...  She wants to still keep up with work which is good for the brain. Keep her mind stimulated.

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.

 

5 January 2016

We had to head back to Jhb today as Simone's Dr appointment is tomorrow and the driving is very tiring for her.  Had a great time relaxing at the river.

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...

25 December 2015

Simone was so excited to be home for Christmas that she couldn't help but stay awake until Midnight..... Before midnight we took and Cole around the neighbourhood looking at all the beautiful Christmas Lights.

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.

20 December 2015

Today Simone wanted to go for a quick walk around the our complex.  We couldn't go for too long as her skin is very sensitive to the sun, she breaks out in a rash. Its amazing what all these side effects that she is experiencing...

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!!!!

16 December 2015

WOW!!!! Such a great feeling to have Simone home at least.. Her Brother is still away in East London having fun with his cousins.