On our way again..

After the surgery to give Saskia a port, she was allowed home for one night before the chemo sessions started once again. Friday 20 September was the due date. Saskia was admitted once again at the Michael Rice ward in the Women's and Children hospital for 4 nights. The treatment had its usual effects and Saskia felt in general very miserable and sick, couldn't eat much and became very weak.

The hospital is great at trying to keep the patients entertained and Melanie has decorated her room in the hospital with all kinds of 1D memorabilia to brighten her days. But the best gift of all was an anonymous person/group who managed to give her two tickets for the live concert of her favourite band! The concert was on Wednesday 25 September, which was the day after her last treatment session, so it was a bit doubtful if she could go. She came home on Tuesday 24 September feeling very weak, but she was determined to go to the concert. So on the wednesday, Melanie and I dropped both Saskia and Marcel off. Marcel was in charge of looking after her during the concert and he did an amazing job! Although they left around half an hour early, they both had an amazing time and something for Saskia to remember.

Another great moment came on Thursday. Friends of us had put some money together to buy her a little miniature pony. Miniature is a bit of an over-statement as she is approximately a meter high, but sure smaller than the "regular" ones. When we picked him up last Thursday, she could not believe her eyes. She put her hands to her head, in front of her mouth and could not say one word. This is one of the only times we have seen her speechless....The pony came with the name "Little Sebastian" and Saskia thought that was a great name for a little horse! It is an amazingly friendly animal and loves the attention it gets from all of the family as well as from Gemma our Golden Retriever.

Meanwhile Saskia has slowly regained a little bit of strength and started to eat again, but developed a fever early this morning. Melanie is currently with her in hospital where Saskia is undergoing many tests to determine what this fever is caused by. Due to the chemo treatment, her immune system is very low and it may take a while to recover.

The way forward

This week was (and still is) a big week for Saskia. Last Monday she had an MRI scan, Tuesday a bone marrow biopsy and today she received a port line. To be under complete anesthetics for both operations is not an easy thing to do. The MRI scan did not reveal anything different and the initial result of the bone marrow biopsy shows no signs of neuroblastoma there. This is a huge relief as is means that the neuroblastoma is still only localised to several areas in her neck.
The oncologists remain however quite puzzled with the fact that her C2 verterbrae shows as neuroblastoma positive. In order for a tumor to become "boney", it usually travels quite a distant through the blood and settles at a distant part in the body. This one however showed up right next to the tumor, which is not just unusual, it is actually unheard off. The MRI scan combined with a PET scan next week may provide some insight into how it may have moved through the body, but all we care about is that it is not spread far. This is good news.
However, in order to treat Saskia, the oncologist (with her team here in Adelaide and backed up by a similar team in Sydney) has decided to treat her as if it was spread throughout the body. It is now the third time that it came back and it need to be treated as if it is the most severe form of neuroblastoma, even if it does not behave like this.
So the way forward is a 4 step approach:

1. Induction chemo treatment. This should kill off all neuroblastoma and will be administered in 6 cycles of 3-5 days each over a period of 5 months;
2. Surgery to remove the left-over tumor bits. The chemo may reduce the tumor and kill it off, but in order to be effective, all tumor bits need to be removed. So the surgery which was originally planned for this week, will still take place in similar format, but now after the chemo treatment;
3. Consolidation therapy. This a chemo treatment specifically targeting the bone marrow and will be administered over a period of one month;
4. Radiation therapy. In order to finish it off, the area where the original tumor started will be targeted with radiation therapy. This will be done over a period of approximately 3 weeks.

Marcel tried to make sense of it all and explained it in a relative easy to understand parable, which makes so much more sense:

• First we spray the weeds in the garden,
• Then we dig them out;
• We then spray the surrounding areas in the garden;
• Then we burn the original spot.

This whole process lasts approximately 7 months and will be followed by an additional 5-6 months of maintenance therapy.

At this stage the oncologist does not yet know which maintenance regime will have to be followed, but it relates to "teaching" Saskia's immune system to recognise neuroblastoma and to kill it off before it develops further.

If we compare the initial journey of 1,5 years ago (which seems like both yesterday and yesteryear), with this one, than this one will be much heavier on Saskia. The chemo will be longer and more intense. This ultimately means that her hospital visits will be more frequent and she will feel generally more sick.

She is currently in hospital recovering from her surgery; tomorrow she can come home and then on Friday 20 September she will be starting her new episode on this journey.


But as it was the first time round, she will not be travelling alone! Please do keep her and everybody travelling with her in your prayers.

Blue is Good!

As promissed, this time Saskia could get her hair blue. We all thought it was a good idea to do it now as soon as possible as last time (see our post of 9 April 2012, "The first Chemo"), she could only enjoy it for a couple of weeks.

So yesterday was the big day. Saskia was soooo excited and could hardly wait to get it done.
Her smile has not many times been any bigger than this. The before, during and after shots clearly show that she had some real fun doing this and more so this time as she managed to convince her dad to follow suit....

Today Saskia will spend most of the day at the Royal Adelaide show, where at the end of the day her little brother Arjen will play a showgame of soccer with his Hahndorf team.

Tomorrow Saskia will have a little performance with her school class in St. Marks's Lutheren Church. Not everybody there knows that she has already blue hair, but we are sure that when they see the father, they will instantly know it is her natural colour.....

Next week will be a very big week for Saskia, with daily trips to the hospital. Monday she will have an another test (MRI) followed by a bone marrow biopsy on Tuesday. This will be a day-surgery operation. During this biopsy they will also take stems cells as spare during the treatment. The drugs to be administered this time will be more aggressive to the bonemarrow and the best bone marrow you can get is usually your own.
Then on wednesday she will most likely get a port. Last time she go a PICC line, but that gave her all sorts of trouble, so the advice is this time to go with a port. This should make her life a little easier as she can even swim with that. This procedure is usually an over-night stay. On Thursday she will then get her first dose of chemo.

Once again we thank God for having us blessed with wonderful friends. It is great to have a laugh, wipe a tear, grab a shoulder, share a drink and just be ourselves with people who understand what we need.

Please do keep praying for Saskia and the rest of us (grandpa "G", Nana, Melanie, Sikko, Shaun, Marcel, Arjen and Pyrene) when we all start the next part of Saskia's journey.

Back to square one

On Wednesday Saskia had her MIBG scan of which we discussed the results with the oncologist today. There was not a lot of good news.
The lump in her neck was confirmed to be neuroblastoma. This was not new news, as we all knew that this was most likely not some sort of virus.
The operation of two years ago left a little bid of tumor behind, which was killed off during the chemo sessions. However, this little bid has now signs of life once again.
But the most disturbing message was that the neuroblastoma has now also spread to her bones. On the MIBG scan it showed that her second verterbra from the top (C2) is now neuroblastoma positive. This means that the scheduled operation of next week is cancelled, as it would not make sense to remove one lump and leave another effected area.
Saskia will have to undergo some further tests next week to determine a baseline for further monitoring. She will also receive a "port" through which her chemo will be administered and as of Thursday next week Saskia will start with intensive chemotherapy for at least 7 month, followed by "maintenance" chemo for another 4 month.

We are basically back at square one and there are no words to describe how we feel at the moment. All we can rely on is the words of Job who answered his wife: "Shall we accept good from God and not trouble?".

Please keep Saskia and us in your prayers.

Can I have blue hair this time?

Yesterday we met with Dr. Michael Switajewski, the surgeon who will operate on Saskia's neck. He did it twice before with remarkable limited visable scarring remaining. He explained that although the procedure is relative standard and that he has performed these type of operations many times before, he cannot go back into the same area indefinately without the change of real lasting damage.
Both the oncologist(s) and he are of the opinion that this should be the last time. In order to ensure that he does not have to go back in again, he will remove all of the remaining glands. There are 5 areas on either side of the neck with glands and he will clean out 4 of those areas. The fifth area (or actually the first) is nearby the chin and is not considered critical to be removed.
With this complete clearing out, the oncologist hopes that, by removing the complete area where it seems to be starting, the cancer will not return. Lets hope and pray that by removing the "factory" and the surrounding area, this battle will be won.
Next week Saskia will have a complete body scan (MIBG), which should show if there are any other further areas affected and on 17 September she will have her operation.
Saskia is slowly getting anxious about the whole process. She understands that after surgery, she will have to go through chemo once again. Even though she doesn't like her curly hair, she hates to loose them again. But she remains in remarkable good spirits. She keeps finding stuff to look forward to. He very first reaction after we heard three weeks ago that IT is back was so typical for her. Her very first words were:

"poop....can I have blue hair this time?"

And yes she can!