Home Sweet Home

Excuses for a little late update, but we had a couple of very busy days. Saskia was finally well enough to come home last Monday. Over the course of the previous days, her pain relieve was slowly reduced and was completely disconnected on Sunday. This caused some issues over the course of the following days, as her body was used to a constant supply of sedation drugs, which was no longer there, which caused a great deal of restlessness. Thank God for good books! Only when we read "Black Beauty" to her she managed to get to rest and fall asleep...
So Monday was the day. The doctor mentioned that if Saskia managed to eat something and keep it in, he would allow her to go home. She was so nervous that the first bite she took she had to vomit out. Poor girl, she was desperate to come home but could not keep much in due to the anxiety. In the end she managed to eat 3 bites of an apple and that was enough to get her home.
Obviously she has only limited energy to do anything. She can hardly walk, so we got her a wheelchair. She sleeps a lot of little sleeps, but manages to slowly get back to her usual self. She eats and drinks a lot more now, although she says that all the tastes have changed. Her spirits have lifted dramatically and today she was actually smiling most of the day. That's how we like it!

Saskia is blessed with such a strong and beautiful spirit, it is amazing. We have never seen anyone of any age so sick as she was and I hope and pray that she will never have to go through something like this again. The transplant was necessary in order to replace her bone marrow. In order to replace her bone marrow, the old one had to be wiped out. We can read about it what this will do to your body and try to prepare for it, but to witness this happening on our very own child is something that I cannot describe as words will fall short. It were the most horrifying weeks we have had as parents. But thank God this is behind her and us now.
She's on the road of recovery and that is all that matters.

And then .... a Smile!

Not many, but still she managed to smile a little today. Praise be to Him!
Her stomach has settled a lot, still a little crampy, but nothing realy serious. She still has mucositis (the blisters and ulcers all the way to her stomach), so she cannot take in any food or liquids and she still has a reasonable level of constant pain. She is still on constant as well as 'patient controlled' pain relief, which makes her very sleepy and causes her oxygen levels in her blood to drop. This means that she will have to wear a mask for additional supply of oxygen.
She looks a little bit like a Christmas Tree at the moment: a port and a pic line with a total of 5 machines, an oxygen line and a line to her foot to measure heartrate and oxygen. However, the important part is that it seems that the transplant has worked as all of her blood indicators are climbing back to normal, which is great news.
She can sit up in bed again and even manages to do some activities (building lego, always the best...). Talking is very difficult due to her ulcers, but she still manages to communicate.
There is still a long way to go, but we are hopefull that she can be out of hospital early next week.
Thank you all for your prayers and please continue to do so as we're not there yet.

Childhood Cancer is Pure Evil

Now I usually do not start with such bold and confronting title. However, this last week and especially these last few days, we have seen the true evil face of childhood cancer and the treatment thereof. Over the past year we have seen Saskia in pain, in all kinds of discomfort and begging it to be over. We have always managed to sooth her pain or make her more comfortable. She always managed to pick herself up after a while and bring back that beautiful smile of hers. But the last few days showed us that those pains were nothing compared to what she has to endure now.
Last week she received her most heaviest dose of chemo. It was targeted at her bonemarrow and it sure worked: her immune system got wiped out. We never take real note of our immune system, but it is constantly at work. Saskia was allowed home last Friday although she was very weak. She could hardly keep anything in her stomach, but insisted on going home. She tried her hardest to keep something in, but nothing worked.
On Saturday she pleaded to get back to hospital as she could not take it any longer. Since then her body has slowly stopped repairing certain common damages. Ulcers have appeared in her mouth and extent all the way down to her stomach, her throat is soar and raw from all the vomitting, blisters on her tongue, which start to bleed, blood in her urine, her stool and every part of her body just aches and aches. And on top of all that pain and agony, her body 'decided' it was time to become a woman. This should have been her special time, but because her body cannot heal, it caused great additional pain and agony.
When she wakes up, she needs to vomit, thereafter she cries herself to sleep. Nothing seems to calm her down. Fevers are coming and going. She is now on constant pain relief which she can dose herself by pressing a button. In order to still give her body the desperate energy it needs, she is on liquid food. She gets daily platelet transfusions to try to support her immune system.
The treating doctors say that her symtoms are common for this part of the treatment. It will take anywhere up to two weeks, before her own body has found the right balance again.

There a few moments of respite. She feels comfortable when Melanie hugs her to sleep or rubs her back, or I massage her head or read stories to her, keep my hand on her stomack, but for now, those moments are few only.
It hurts so much seeing your own child going through all this. We need to be strong for her, so we swallow our tears and smile the warmest and most re-assuring smile to her and we tell her that everything will be alright in the end.

But the truth is that we want to be hugged to sleep as well. But God seems so far away. But then when we need it most, He re-assures us:  "In the world you will have tribulation. But take heart; I have overcome the world.”

And we do take heart.

In God we trust

What a fantastic couple of days we had during the Easter weekend. Saskia was allowed home on the Thursday before Good Friday and the Little Heroes Foundation had organised that we could spend the weekend at Hindmarsh Island. A wonderful family has donated their holiday house for the use of families supported by Little Heroes. It was a wonderful time to be away from it all for a while.
Saskia managed to forget the effects of her operation and was happily sitting along the waterside and catching many a fish.

As earlier mentioned, the operation was a great success. A total of 15 nodes have been removed of which 3 still had active cancer. This was a bit of a surprise as we all thought that there was no more live tumour left, bar her 2nd vertebrae. The MIBG scan however can only detect active neuroblastoma if the size of the tumour is larger than 1 cm. The 3 nodes were smaller than 1 cm, so the scan did not pick these up. However 80% of these tumours was already dead, which proves that the treatment is working.
Our theory is now that Saskia's neuroblastoma is a very slow growing cancer. The last time when she was declared to be in remission (after an MIBG scan in June 2012), there were still some small particles left, which were not detected. These particles started to re-grow again, which made her relapse. With this operation, ALL of the nodes have been removed, so we are relative comfortable that there is no way the cancer can come back here.
All that is left now to treat is her 2nd vertebrae. This will be done with one more chemo session and one lot of radiotherapy.
The chemo will start next week. This will be a very heavy dose and targets her bone marrow. This treatment will be the heaviest she has ever had and will wipe out her immune system completely. There will be virtually no platelets left to stop any bleeding, no white blood cells to fight any infection and no red blood cells to bring vital oxygen to any organ. This means that she will be extremely weak and need to stay in hospital all of the time until she has regained some strength.
On Monday thereafter (12 May), she will receive her own stem cells through a stem cell transplant. It will take a while before this transplant will have its effect, so in all likelihood, Saskia will have to spend around 3 weeks in hospital. As she will have no immune system to protect her, she will have to be in isolation. Only one family member is allowed to stay with her.
We ask you all to carry her and us in your prayers as the coming period will be one of the most trying ones.