When journeys join...

Even though this blog is all about Saskia and her journey, we would like to mention one of our good friends Graham Skinner and his journey with cancer.

We met Graham and his family around 6 years ago when they just moved over from England. They moved "Down Under" for only one reason and that was to get a better life, like everybody else that makes the big trip.
This better life got a drastic change in late 2007 when he was diagnosed with Melanoma. It was one of those awkward moles on his leg that grew weird. Doctors thought they got most  of it out, but some tiny particles had spread throughout his left leg. Again after an operation and removal of his lymph nodes in his leg, doctors thought they had it all out. This operation caused him to change his lifestyle drastically as any injury/bruise on that leg could potentially loose him his leg. He gave up his beloved mountain biking and in order to remain fit, he took up Kayaking. Everything seemed manageable untill that moment in July 2010 when the doctors said that the cancer has spread throughout his whole body. It was everywhere: his skin, his bones, his lungs, basically every part of his body was affected, except his brain. The cancer was in such developed stage, that there was not much hope. No chemo therapy or radiation would be able to fight this. Melanie and I visited him in hospital somewhere in September 2010 and we thought that that was the last we would have seen off him. He was in soo much pain that if he had to give a number between 0 and 10, he would have rated it 15.
There was however a glimmer of hope. Some drug was being tested around the world and it seemed that Graham's situation and cancer mutation was a perfect match for a test. This drug goes by the name or registration GSK211 BRAF Inhibitor (??) and it indeed did miracles. Within 24 hrs of taking the drug, his pain levels dropped to below 10 and within 48 hrs the visual signs of the cancer reduced significantly. After now being on that drug for one and half year, he is back at work and feels great.
The drug however does not cure the cancer, it only reduces it in size and contains it. Containment lines can be breached... It did so with Graham and there is now a spot right in the centre of his brain. The drug still manages to keep the rest of the spots under control, but it fails to do so for the one in his brain.
He has been told that once the cancer is in the brain, there is little that can be done and survival rates beyond 4 months are rare. He was told that radiotherapy is the only option of prolonging his life a little and he took the option. We have seen first hand what chemotherapy is doing to your body and I would not wish that upon anybody, but having radiotherapy on your brain is probably worse. In order to get to the cancer spot, they literally have to fry his brain.
In America there is a new drug by the name of YERVOY or IPI, which is based on unleashing the body's own immune system on the cancer. In layman's terms it boosts the immune system so much, that it can actually fight the cancer. This drug is not available in Australia and a complete course of it costs around $120,000. Even as a private patient, this amount is not covered. The big downside is that this drug also does not give any guarantees and it can even cause the body to collapse on itself as the immune system cannot distinguish any longer between good or bad cells.

Humanly speaking there is nothing that can be done for Graham. His journey is getting tougher and tougher. In one of our earliest blogs, I wrote that cancer is a fair disease as it does not discriminate. In Graham's situation we so much wish that it would discriminate. I do not think that there is a better bloke than Graham, no better dad and most likely no better husband. Any one who has come to know Graham feels instantly better. He is always positive, optimistic and cheerful. Even now.

Please do keep him and his young family in your prayers.

Feeling Great!

The third lot of Chemo went as expected: feeling sick and tired during the treatment, but because Saskia was admitted in hospital throughout the three days of treatment, she was under constant watch and care. It seems to have helped, because other than the usual tiredness, she feels absolutely great.


She eats a lot, drinks a lot, laughs a lot and is generally happy and good. What an absolute pleasure to see that change in her. Saskia is very confident with her appearance as well. She ain't shy no more to show her bald head in public and cannot wait to go back to school.
Next week at her school there is the annual photo shoot and hopefully she can partake in that.
We thank God that He has given her this period of respite and we pray that the last few weeks (two more befor the last treatment and then another 3 or so to get better again) will be similar.

KEEP SMILING SASKIA!

An amazing week

What a week this was. After last post a lot has happened and where do I start. Saskia was allowed home on 9th May. She still needs to take daily medication for the infection in her arm and she receives twice daily from a nurse-at-home an injection to reduce the blood-clothing. Saskia needs to be pushed around in a wheelchair as she gets very quickly tired, but she feels good and is in high spirits.
But before Saskia got out of hospital she got an absolute surprise present from all my colleagues at Maritime Constructions. Below follows the text (or at least part of it) from what Amy Kretschmer and Carmen Fiedler wrote after they gave Saskia her gift:

"...we all wanted to do something to help, and we knew the best way would be to do something for Saskia that would make her smile. So we set out to raise some money, expecting to put together a little gift to lift her spirits.  To our complete surprise, our little office pulled together and raised $1,182.00!

With this amount of money, we were able to make one of Saskia’s dreams come true – we got her her very own iPad.

On Tuesday, Carmen Fiedler and I took our daughters to visit Saskia in the Women’s and Children’s Hospital, to deliver her gift on behalf of everyone at MC. When we handed her the package, she pulled out an iPad cover, and looked a little bit confused. She then took another look and discovered her very own iPad, and could not believe her eyes! For the next 15 minutes she may well have been in shock; she giggled, hyperventilated and looked like she might even cry.  The only words she could muster were  I… got… an… iPad!!!’ 

 

I wish I had a video of her reaction to show you all just how much your generosity meant to this gorgeous little girl. We certainly achieved our goal of lifting her spirits.....

""

An iPad might be seen as just another ordinary modern electronic gadget, but for Saskia with her condition, it is actually a pretty amazing tool. On it she can skype with her family in Singapore even in hospital. She plays games, watches video's, is on facebook, makes notes, photo's and does some art. Saskia does not have to carry a whole bag of stuff with her when she goes to hospital and she does not have to watch all those repeats which are on television. All in all it is an amazing present, which we are all very thankful for.

Another one of those special moments was the day that Saskia was allowed to leave hospital. I will write a little later about the various support groups that exists to assist children with cancer and their families, but I do like to mention the "Little Heroes Foundation". One of the founding fathers of this foundation is Chris McDermott, a well known Australian Rules Footy Player back in the eighties and early nineties. On wednesday he was doing a promotion for the Little Heroes Foundation which involved a photo shoot with three children under treatment for cancer. Saskia was asked to be one of those children due to her bubbly personality and amazing smile! 

Saskia was so excited and rightly so! One of the photo's will most likely be used for the cover of the next edition of the white pages, but that's all supposed to be a secret....(oops).

The Little Heroes Foundation does a lot for these children. One of the things they do is provide free admission tickets to all kinds of shows. For last Sunday we received 6 tickets to go to the magic "Razzamatazz" show. A show filled with magic, dance and acrobatic tricks. During one part of the show Arjen was asked to be the assistant of the magician! Arjen went on stage in front of hundreds of people and together with Michael Boyd the illusionist, he performed the most amazing tricks! We tried to take a couple of photo's but they all failed. However the scenes are forever in our minds!

Marcel received some very good news this week as well - he has been selected for the soccer reps team for the Adelaide Hills as well as for his school Cornerstone in Mount Barker!

All in all a very good week and an everyday smile on Saskia's face! It definitely prepares her for this week where she will receive another lot of chemo as of Thursday through till Saturday.

Laughter: the best medicine

On any journey, there are good moments and there are not so good moments. There are bad moments and moments that are just downright very bad. However they are all part of that very same journey. The last 10 days or so were part of a very bad experience, but it seems that we've had the worst of this episode.

Yesterday Saskia was visited by her two bests friends Jessica Steyn and Jaymee Blades. Jessica came in the early afternoon and within no time they were giggling away! They warmed themselves up with laughter before Jaymee came later in the afternoon and boy, did they have fun! They were all laughing their heads off and that did Saskia soooo good!

It is amazing what a bit of laughter can do. The photo on the left was taken with extreme difficulty. They just could not keep still or sit quiet. After this photo was taken, they all burst out again and again and again. It was FANTASTIC!

When she got her blood transfusion yesterday, the girls came up with all kinds of vampire stories and tears were running down their cheeks.

Brittany's Cheese Cake

And today there was another great visitor: Saskia's "big sister" Brittany Herriman. who made her a fantastic cheese cake.....

They do say that laughter is the best medicine and although it may not heal cancer, it certainly blows off some steam.
Saskia does feel much better now and doctors are happy with her progress. She still has fevers, but they have come down. The pain in her arm and shoulder is not there anymore and she actually has been eating some real food.

And yes, she does not mind being her again!

"I don't want to be me!"

That were the words she cried over and over again yesterday. No matter how much we want to get some positive news, it just doesn't come.
The PICC line has been removed as it has developed a nasty infection. Those of you with some medical knowledge will know what a "staff" infection is. At least we know now what type of bug it is and it can now directly be targeted with the right antibiotics. There was also a blood cloth in her left shoulder (somewhere along the alignment of where the PICC line was) and she is in a bit of pain. Fevers are sill all over the place and her white blood cells are now so low (due to chemo) that she needs a blood transfusion most likely today. The taking of oral medication is becoming more and more difficult as her stomach is nearly empty.

Even though Saskia is going through a very rough time at the moment, even though she keeps asking "why me?" and telling us "I don't want to be me", she does understand that there is no other way.
As I wrote before, there is little immediate comfort in words if you're in so much pain. All we can do is repeat those same words in times of lesser trouble, so that it becomes a beacon of hope when she needs it most.
The bible is full of this. The bible never promises an easy, healthy and happy life. It does not preach that when you believe, all your worries are gone, all your pain is gone and that you live a long and happy life. But what it does do is give meaning to life. It gives hope. It provides for a beacon in times when you need it most.

We do not know how long Saskia has to remain in hospital for. This all depends on her fever. If she is fever free for 24 hours, she can go home. Please keep her and us in your prayers.

Hospital time

Yesterday Saskia had to rush suddenly to the hospital as she had developed quite a high fever. Several test later it looks like she has an infection either in or around the PICC line.
Due to her treatment her body cannot really fight the infection, so Saskia receives a high dosis of antibiotics through her PICC line at the moment.
It does not look like she will return home soon, initial indication is that it will be 4 days to at least a week...