UK Stud Dog Draw - Simone van Kraayenburg fund - Page 6

11/8/2010 - from Simone

I feel like this journey is never going to end! I officially HATE the word WAIT. I am so tired of waiting. Waiting for a diagnosis, waiting for doctors, waiting for results, waiting for a donor, waiting for the NPO to be registered, waiting for people to stand by their word, waiting for the transplant. Waiting for a miracle. My whole life seems to revolve around waiting. I just wish it would all end so I can move out, study, work, earn my own money and live my own independent life! Like a 21 year old should be doing. I can’t handle everyone controlling my life anymore. Being told where to go, what to do, what not to do, what to eat, drink think listen etc etc etc. Having to fill consent forms out to see my own blood test results. I feel like a robot that gets re-programmed all the time! The frustration of this journey is getting to me now. I want it over and done with!!!!!! And most importantly, I want my LIFE back! Going from a fabulous independent life, with a fabulous job controlling my own life, to this… sucks. I know its only been 6 months since this all started, but it feels like forever! I feel like a little kid on the way to a far journey, asking every 5 minutes, “Mommy, are we there yet?”.

Breath. I just wanted to share a fraction of the frustration a cancer patient has to endure. I am sure other patients will be able to relate to me.

14/8/2010 - from Simone

I think I am now slowly getting out of my yucky depressive emotional state that I have lately been in. This happens time to time.. I watched Finding Nemo for the 100th time, and Dory saying: “Just keep swimming, just keep swimming, just keep swimmmming swimmming, what do we do? We swim swim swim!” hehe
So that’s what I am doing. Keep swimming!
I could not go for my blood tests this week as I have been sick in bed all week. Got a upper wind pipe infection or something to that effect. But luckily I am getting better!
No new news on donor. Sigh. But heard we are a perfect match so far! They just have to double check. Also still waiting on the Cytogenetics from my biopsy. This takes a while, but should have it this coming week.
What are Cytogenetics?
Cytogenetics is a branch of genetics that is concerned with the study of the structure and function of the cell, especially the chromosomes. It includes routine analysis of G-Banded chromosomes, other cytogenetic banding techniques, as well as molecular cytogenetics such as fluorescent in situ hybridization (FISH) and comparative genomic hybridization (CGH). ie, It is to check the chromosome abnormalities. I am missing chromosome 7.
Chromosome 7
Chromosome 7 is one of the 23 pairs of chromosomes in humans. People normally have two copies of this chromosome. Chromosome 7 spans more than 158 million base pairs (the building material of DNA) and represents between 5 and 5.5 percent of the total DNA in cells.
Identifying genes on each chromosome is an active area of genetic research. Because researchers use different approaches to predict the number of genes on each chromosome, the estimated number of genes varies. Chromosome 7 likely contains between 1,000 and 1,400 genes. It also contains the Homeobox A gene cluster.
I got this stunning quote from a friend…
If God wants you THERE He will take you THERE… in the meantime enjoy HERE on the way to THERE…
To stay informed about this journey, I follow an amazing lady’s blog religiously! Now Jacqui is a real trooper!
She is going through a transplant right now, if you would like to follow and support her please click on the link.
Jacqui’s Journey
Take Care everybody and thank you for reading my blog!

18/08/2010 from Simone

My platelets have dropped quite a bit again. They are now at 37. Not good. Normal range 150-450. Red cells are fine, white cells are still low, bit slightly higher than last time as I am sick. They go up if you have infection. Platelet transfusions are only necessary if they below 20. But if I present too much bruising and bleeding we will consider it. They only last 2 days, so its a tricky one.
The sample for the possible donor arrived on Monday. We should know the results by the end of next week. After that, if we still match, its one more test which will take 2 weeks. Not long now! Some people think I have found a donor for definite, I might of been a bit vague. We are a perfect match so far, but there are still these 2 confirmatory tests left. It is very unlikely that we will mismatch. Please pray that we will keep on matching! We also still waiting on the final bone marrow biopsy results.
I am now basically over my infection. Still got a cough though. Otherwise I am doing okay, just very tired.

24/8/10 from Simone

Things are falling into place! We are now starting to liaise with Cape Town for the transplant. Exciting and scary at the same time! Transplant will most likely be November. And I will most likely be in hospital for Christmas, but apparently its quite fun in hospital! I will have to stay for at least 3 months in Cape Town, ideally 6, but the rest of my care will be here in Johannesburg again. The donor is a perfect match so far, just 2 tests left to make double sure. My Dr said he has never seen a such a perfect unrelated match!
We have raised approx R120 000 so far, which is absolutely amazing! We need another R80 000 approx for the search, so if you have any ideas, get in contact please. I can’t say enough how amazing everyone has been with their donations. I can’t wait to to give back in some way.
I have to have all these check ups now. One is dental work. I have to go to the dentist, but they can only look, not touch. Haha. Once we know what has to be done, I need to be admitted to hospital and get a platelet transfusion first. If a baby toothbrush makes my mouth bleed profusely, you can imagine what a dentist will do. It was quite funny, my Dr said: “Just show the dentist your blood tests, they will be too scared to touch you!”
Take care, and thank you for all the support! x

Today from Simone

My donor is 99% confirmed! There is just one more high resolution test to do. It will be done in Holland, and takes 2-3 weeks. The donor has had his viral’s checked (6 tests. HIV, any other viral infections etc) which are all perfect. If one of them was not right, we would have to wait 6 months. So this is very good news too!
Thank you for all the prayers! They are working for sure.

I am still collecting donations - please help Simone, every penny counts.

Cheques can be made out to S Van Kraayenburg and sent to me. (PM for address)

Or you can donate online at www.gsdleague.co.uk

Thanks so much to all who have donated so far.

For every £10 donated you get a free entry in the stud dog raffle which will be drawn soon.

Thanks, Shirley

BUMP

From Simone 28/08/10

This past week has had very good events – my donor 99% confirmed, Jacqui went home from her transplant, I started working part time, and very bad – Michelle’s mom was rushed in for a mastectomy, a young lady lost her life in a fatal car accident and Craig lost his battle.
I follow 2 people’s journeys of cancer religiously, Jacqui and Craig. Sadly Craig passed away today. I just watched MTV’s true life: I need a transplant, which Craig featured in about a year ago. It brought me to tears. Luckily I don’t have all the prior complications like he did, but what is coming is so scary. How can one actually fully prepare for this transplant? Yes I am positive, more than most actually. But sometimes you get scared. Really scared. You worry when this illness is going to take over, you worry about what your future holds. Will the chemo kill my fertility like they say it will? I hope not, because since I was very young, my biggest fear has always been not being able to carry my own child one day. Its really tricky when people who don’t know, ask me how are you? Are you well? I never know what to say. I feel like if I say, I am great, life is good, I am lying. To myself. I still wonder, why me?
I still look fairly good physically (make up covers a lot of paleness, and clothes cover bruising), and still feel pretty good except for being very fatigued. I cannot stop to wonder if this is as bad as it will get.
A lot of people wonder if I am having chemo right now. I am not.
Reason number one, MDS is considered incurable. Best possible cure is the bone marrow transplant.
Reason two is that chemo lowers your blood counts to where mine are now. Which means I will not have any blood cells left. MDS causes my body not to make enough cells, and it makes the wrong ones too. My body will not be able to produce enough blood cells to keep me alive. When I have 8 days induction chemo prior to the transplant, the new marrow will replace my blood cell making ’system’ amongst other things.
So I was quite sad to see that this last biopsy did not reveal any improvement. I am still not giving up hope on a miracle, that I will just be cured!
I would just like to say, Alicia, my ‘Tjoer’, I would not have been able to do this without you. You listen, you always there, you will do anything you can, you wipe my tears and I wipe yours. <3
And of course a big thank you to my great support system, I would also not have been able to do it without you.
On a lighter note, I found a very funny quote this week:
“A successful man, is someone who earns more than what his wife can spend. A successful woman, is finding such a man!”
Have a good week everybody.