Diary

A new year 2008

I know it's way past any festive season and New Year's has long come and gone, but to me 2008 will always be the first year after Otto. We still get a lot of concerned friends who ask how we are, so I thought I’d write a bit about it in Otto’s diary. We’ve also just passed the 7-month mark since Otto died, which means we’re heading towards one year. We have survived thus far. Time makes things easier to bear, the intensity of Otto’s loss has subsided a bit, but we still think of him every minute of every day.

We’ve managed to come through a lot of ‘firsts’ without him as well. There were his birthday, Christmas, New Year’s, a family-holiday, kids party, leaving Maya at nursery, Luca crawling, family days out, living in a new house which he only ever saw from the outside, the list goes on. More than missing Otto on these special days, I feel his loss at not being here experiencing them with us. I know he would have loved it. He would have been so proud to see Luca getting up on all fours, or dropping Maya off at nursery, always being the big brother taking care of them both. I’m certain Otto would’ve been a big help with his siblings, protecting them, playing with them. I miss his company terribly. But Otto comes with us everywhere we go and he sees everything we do. I’m sure he’s not sad and that gives me some comfort, although it’s painful at the same time.

I see Otto’s old friends growing up around us, and I wonder how big he would’ve have been or how he would’ve been getting on at school, new friends he would’ve made. My heart jerks every time I see a mum with 3 kids the same size and gender as mine. I’m not obsessive and I’m not living in the past, it’s more like I’m trying to envisage the future Otto would’ve had without cancer, if he were here.

Maya still mentions him from time to time and we look at our albums together and I tell her stories of her big brother. She listens fascinated. She laughs like him. I’m reminded every time of how blessed she is not to feel the pain of the loss as she might have as an older child. But she and Luca will know all the funny stories and remember Otto through us at least. It’s always nice to hear from anyone whose child remembers Otto, even if it makes them sad. I love to know that Arthur thinks Otto had cake with the angels on his birthday, and Otto’s cousin he never met who goes off praying for him at break-time during school.

People don’t often ask about Otto and about missing him. I’m sure it’s the natural progression of things. Otto and everything that happened last year is still very much on the forefront of our minds though. I’ve heard the rest of the world takes around 6 months to expect you to have ‘moved on’ and to be ‘OK’ then. This again I’m sure is natural and only parents who have experienced the same loss can fully comprehend that it’s far from true.

That you will cry for your child everyday for the rest of your life, even though it’s only in your heart. The longing you have to hold him again. That even though you answer polite questions about your life, you’re screaming inside. That when you hold your children close, you wonder why the other one isn’t there. That when you’re laughing at a joke, or enjoying a day out, you’re thinking of your child that’s not there. I see mums with their first-borns, and I know I’ll never have that special bond again. Of course I have special feelings and love for my all my children, but the first one is different and the feelings are more exaggerated in a way. Maybe no one talks about Otto because they think they’ll upset us or make us sad. But they don’t understand that NOTHING can make us sadder or upset us more than the loss of our precious child.

By the same token I find myself sometimes deliberately steering the conversation away from Otto, just because I don’t want to ‘go there’ at that particular moment or don’t want to upset the other person by being really honest. Why do I even bother about sparing the other persons feelings when I’m going through the worst time imaginable? I don’t know. Maybe it’s human nature.

I’ve started counseling recently to just have an outlet for my thoughts and feelings. Maybe it’s easier in a way to talk to someone a bit distanced from my personal situation. It made me realise that it feels good to talk about Otto and my feelings and what I’m experiencing. Perhaps it’s sad at the time, but there is definitely a release and it makes me feel better. I’m hoping it will get easier in time to talk about my beautiful boy, he was so special and his short little life deserves to be remembered.

In the past couple of months I’ve thought a lot about the anger I feel at losing Otto. In normal circumstances one usually expects some kind of forgiveness to follow anger, so that you can get over it and move on, but for that to happen you have to know first of all who the anger is directed at and secondly where the forgiveness should come from. This is really difficult in our case, because we can’t blame anyone for Otto’s death. I read somewhere that to forgive in full, you have to be able to give thanks to have had the experience. I fully give thanks for having had Otto in my life and the things I’ve learned from the experience, but I cannot bring myself to be thankful for experiencing the cancer and the treatment he had. The suffering he went through seems so pointless and senseless that I just don’t know if there’s anything to be thankful for in that. In the light of Easter coming up, I can truly say I know what God went through to see his son suffer and to lose him. But at least there was a point to Jesus’ death and Christians can give thanks for His life and Death. Especially at this time of year. Where does my own anger and forgiveness fit into all of this? I’ve turned on and to God in trying to make sense of the senseless and to be honest have reached no conclusions. I’ve read books, and there are no answers in them. Maybe the key is acceptance. That is by no means the easy way, but could bring some relief from searching for the answers, which frankly is an exhausting occupation.

To bring this long tirade to an end, we have certainly learned a lot from our experience with cancer and the death of Otto. For one thing Paul and I are in agreement that we don’t complain as much about the usual stuff we always griped about. Normal day-to-day stuff that happens just isn’t really worth the effort. Life’s too short. I think we’re more honest to ourselves for the same reason. There just isn’t enough time to play silly games that don’t lead anywhere. All of this sounds so cliché and it’s horrible that we had to go through such an awful thing for the lesson to have hit home. We also feel inspired to do things and to stop procrastinating. This is definitely a good thing and we feel positive about the projects we have going and our thoughts about the future.

So this is just a little glimpse in our lives at the moment. It might give insight, it might bring understanding. I don’t really know if I want it to bring anything, but even though Otto isn’t here with us anymore, he lives in our hearts and I feel that his story continues and this is part of it.

Today marks 4 months since Otto died. 11 December 2007.
Sunrise for Otto 11-12-07

I finished the diary a couple of weeks ago and it accentuated again the finality of Otto being gone. There will be no more new memories of him, no more photos, no more stories to tell. We've been through and survived his fifth birthday, we've been on our first holiday since Otto's death and started making new memories as a new family without him. We're getting on with life. Maya is starting nursery in the new year, Luca is sitting up. Our first Christmas is approaching fast, another first without Otto.
I attended a lovely service of remembrance at the Royal Marsden on Saturday and there I learned about the International Day, on the second Sunday in December, for remembering all children who have died. Candles are lit around the world from 7 o'clock in remembrance of our lost children so that in every time zone candles burn for 24 hours. Our candle burned until it went out for Otto, Gustave, Danie and all the lost children we know. It gives me some comfort to know that I'm sharing a similar sadness with millions of people around the world.
One of the poems read at the service:

Some people come into our lives and move our souls to dance. They awaken us to understanding with the passing whisper of their wisdom. They make our world more beautiful and they leave footprints in our hearts. We are never the same again.

We also go to bereavement group counseling. Both of us find it useful to be able to talk about our loss and of Otto in a safe environment and with people who also lost their children to cancer. Last week a list was handed out of do's and don'ts for people supporting family or friends who have lost a child and a friend I told about it immediately requested that I put it on Otto's website. It's in no way a reflection on anyone who have given us support.
We find ourselves in a new world of knowing quite a few people now with very ill children and the likelihood that they can die, is a very real one. Not only is the death of our own child a rude awakening to the sadness in the world, but also that it keeps on happening to people all around us is terrible. Coming from the wonderful world of oblivion, where this kind of thing happen only to 'other' people far removed from us, it's difficult to get used to and I wonder if one ever does. Hearing from someone I know that their child has relapsed, is the most awful experience and you wish you could spare them the agony. And it happens rather more frequently than one would hope for. Fortunately for us all there are the ones who keep on surviving.
As Christmas draws ever closer we are also in preparation, even if it is rather reluctant. Sending cards, putting up decorations, buying gifts. I'm just thankful for online-shopping, which gives me a welcome respite from the busy shops and superficiality that unfortunately comes with this season. I am however thankful for Maya's happy laugh when she sees all the colourful lights, Christmas trees and 'the fat man'.
And I try to keep in mind the blessing from the reverend at the service on Saturday: May you have the gladness of Christmas, which is hope, the Spirit of Christmas, which is peace, And the heart of Christmas, which is love.

Happy Christmas to all
Lisl, Paul, angel-Otto, Maya and Luca

17 August, Friday

'Would you tell me, please, which way I ought to go from here?'
'That depends a good deal on where you want to get to,' said the Cat.
'I don't much care where -' said Alice.
'Then it doesn't matter which way you go,' said the Cat.
'- so long as I get somewhere,' Alice added as an explanation.
'Oh, you're sure to do that,' said the Cat, 'if only you walk long enough.'

Email sent 15 August
“Dear all,
Unfortunately this will be the very last update about Otto. He sadly lost the fight against cancer on 11 August 2007. I wanted to write this to tell everyone about his last weeks and what happened. The last update was so positive and he was doing so well in June when he was home and he's deterioration surprised all of us. We are so glad to have the memories of him at Maya's party having fun, and being with us at Luca's christening.
In the 2nd week of July Otto started getting fits again. [Reading my diary again, the fits actually started in June already.] Paul and I were surprised and worried, but the doctors explained that this could happen anytime in Otto's life, because of scar tissue in his brain. The medicines he was on were increased, but it didn't control the fits. He had an EEG, but the results didn't show anything to be concerned about. I took Otto to the doctor quite often over the next 3 weeks, because we were concerned about headaches, lethargy, tiredness, vomiting, loss of appetite (basically the same symptoms he had before he was diagnosed). Paul and I thought it might be the shunt being blocked. All the symptoms Otto had, could also be caused by the anticonvulsants he was on, so the doctors weren't too worried, it was a case of giving him time to get used to it.
During the last week of July, I noticed that Otto had become more unsteady on his legs again, after all the progress he had made this was a blow, and that his speech was also getting slurry and just not quite on the same level as it had always been. So when we went to hospital for a CT scan of his chest, we insisted on a scan of his head as well. At this stage chemotherapy was already not an option anymore, because it affected Otto so badly and his chronic chest infection made it life threatening. The scan of his chest was to make sure he was well enough to be anaesthetised for radiotherapy, which was the only other option left for him.
The scan showed that the cancer was growing again. We were going to proceed immediately with radiotherapy and appointments were made. Otto was sent to St Georges hospital to make sure the shunt was working properly. We stayed there a couple of days and were sent home again. It wasn't the shunt. His medicines were increased again and he was put on steroids for the swelling on his brain.
The last 2 days he spent at home, 1st and 2nd of August, Otto just complained of severe headaches and tiredness. He was so very tired. He lay on the sofa or in bed. He was very poorly. Thursday afternoon he told me that he wasn't getting any better. Friday morning the 3rd, Paul and I woke up to strange sounds, Otto having a massive seizure, all his limbs jerking, and difficulty breathing. I called 999 and he was rushed to hospital where he was intubated and transferred to the PICU at St Georges. His deterioration was daily visible, which proved to me the viciousness of the tumor, which I suspected already back in January. Otto wasn't on a ventilator anymore, but he never fully woke up again after the fit. He responded to us until Tuesday. I told him the angels were going to look after him (he was always very concerned about who was going to look after him), and he nodded his head. The tumor was just too aggressive and in Otto's condition radiotherapy wasn't an option anymore.
We brought Otto to Chase at Christopher's Hospice on Thursday the 9th, where we could get away from monitors and the hospital setting. Where Otto could be just a boy in a bed, surrounded by the people who love him most. Paul and I sat with him until the end when the angels finally came to fetch him on Saturday. Waiting for angels take a life time and is a life-changing event.
We are heartbroken to have lost our son and big brother, but also very relieved that the pain and struggle is over. When we looked at his face afterwards, all the pain had gone and he was our baby again. I'm sorry that he had to go through the last 7 months of treatment, but I'm thankful that it gave us the precious time to prepare for the end and say goodbye to our boy. We are going to miss him terribly.
On a more practical note, the service for Otto is on Friday, 17 August at 13:00 at the Guildford Crematorium. Afterwards, those who wish, can join us at the Christopher's home (directions www.chasecare.org.uk/about-chase/guildford-accommodation.html) for a cup of tea or wine and sandwiches. Flowers are welcome, (the only 2 vases I own are now use) but we prefer a donation in Otto's name to The Royal Marsden Cancer Campaign (cheques payable to The Royal Marsden Cancer Campaign and send to: J. Gorringe & Son, Funeral Directors, 55 Hare Lane, Farncombe, Godalming GU7 3EF, UK, with a note to say it's in Otto's name, or online at www.royalmarsden.org/campaign/index.asp. We are also going to release balloons after the service, if you'd like to bring any your welcome.
We have been staying at Christopher's home for the last week, where Otto's body has been resting until the service on Friday. They have given tremendous support and help to our family in this very sad time.

Love,
Lisl, Paul, Otto-angel, Maya and Luca
Xx”

11 August, Saturday
Otto died at 11:50. Paul and I were with him. About an hour after Frankie and Lenèe arrived. I'm sure Otto was waiting for Frank, I told him earlier in the week he was coming. Otto looks like an angel, all the pain gone from his face. He's my baby again.

10 August, Friday
We had a peaceful day. Otto's breathing is getting worse. This morning at 4 he raised his arm and he tried to open his eye. I went to him immediately, I'm so glad I was awake and could comfort him and tell him I was there.
We washed him this morning and it felt like the left arm reacted. That was the last movement. Ockie was here. And Annie our community nurse, and Lottie and Nelis (Nicola in SA). When Annie heard Otto's breathing she said it won't be much longer. The breathing is located in the brain stem, and that's the last part of the brain that switches off.
There was a beautiful concert tonight by the Royal Philharmonic Orchestra and some of the kids from CHASE. One of the kids wrote a beautiful song that really spoke to us. Lotto brought the most precious angel. It's a terrible thing, the decay of the human body.

The CHASE concert

9 August, Thursday
6:00 Otto is still here. He is only just breathing. We're taking him to Christopher's today. There were 2 light air balloons hovering over London when we woke. What a sight.

Hot air balloons from hospital window
12:30 The ambulance will be here in an hour. Otto is still waking up, right eye opens a little, left arm flying slowly. Chest worsening. He's comfortable, just sleeping. I wonder if he dreams.

Just a boy in a bed
20:30 We arrived at Christopher's at 4:30. It's a wonderful place and Otto would have loved it. The train tracks go past close by and you can see the trains go by, the garden is huge with trampoline, climbing frames, sand box, swings. Inside is beautiful. Otto got the Universe room and we've got 2 flats upstairs for the family. The flats are sponsored by Ronal MacDonald House as well.

Maya having fun at CHASE

8 August, Wednesday
Paul and I are sitting with Otto in a room in Pinkney ward. Paul went to fetch Oupa this morning, while I stayed with Otto. Stergios came again. I told him I didn't think it was going to be very long. He said we fought an amazing battle and gave Otto every chance we could.
Paul fetched Ouma and Maya as well. I'm glad they could be here. I cry with another mum in PICU. She doesn't know if her son is going to pull through. They brought us up here around 2. It's much better. Yesterday we weren't sure of moving Otto again, but the privacy is good. Ouma, Oupa, Maya, Paul, Luca and I sat around Otto's bed this afternoon. His arms flying, right eye fluttering gently, breaths becoming more slowly and irregular. I talked with him all day and told him about heaven. I think maybe he won't last the night.
My boy ....

7 August, Tuesday
To hear your child doesn't have a chance to live anymore. Even if you've known it in your heart for a long time, but to hear it out loud is something else. The radiologist basically said that if Otto 'woke up' neurologically within the next 2 days, then radio is still an option. That means that it's the drugs causing him to be the way he is, and not the cancer. But I know it's not the drugs. Stergios also gave us the option to leave. At first we thought we would wait, but I told Paul I wanted to call Eileen to help us get out of hospital. The last thing Otto still needs is yet another light shining in his eye or a squeezie arm for the blood pressure.
Eileen and Maggie (from palliative care) came at lunch and told us our options are to stay here, go to Royal Surrey or to the hospice in Guildford. That's where I still wanted to take Otto for hydrotherapy after treatment. We decided on the hospice. We can all be there together and Ouma and Maya can come.
Then we just waited. Johan and Lizanne came tonight. They're so sad, Otto loved them so much and they him. They're going to SA tomorrow. Carin and Angelique called, and I talked with Tess. I'm kind of relieved that everything is coming to an end, but I don't know how we're going to get through this or how to help Otto through this. Otto is struggling so hard to let go it seems. He reminds me of the 'dying swan', with his little arms waving in the air. The Lorazopan isn't working anymore, so he's back on Midazolam and Morphine.
My dad is coming tomorrow. When I told Otto this morning that Oupa is coming, the said 'Thank you mummy.' Later I told him the angels were going to look after him now, he nodded his head. Now his little mouth doesn't open anymore and his completely quiet. He still hates it when I put vaseline on his lips and he doesn't like the oxygen mask. Otto will be Otto.

Otto and doggy

6 August, Monday
They didn't need to intubate Otto again last night. Stergios came again early this morning. He asked me what I thought and I told him that our time was up. He's very worried and he agrees with me. He's angry because the tumor is so aggressive and is just galloping away. The cancer is resistant to chemo, and it's not supposed to be, because Otto responded so well with the chemo. He's concerned about the radio therapy, it also has it's side effects, and Otto might not recover from those. He explains it by comparing it to a tumor on a hip that is causing the leg not to work anymore. The radio therapy to the hip might stop the cancer, but it doesn't mean the leg will work again even if the tumor is gone. For Otto that means, even if he does survive, and the chances are slim, then he'll be like he is now for the rest of his life.
Claudia brought lunch and stayed a while. They did another EEG on Otto. He's so agitated, it was very challenging to get him to lie still. He hates to be restrained in any way. We sat with him for a long time tonight, but had to go sleep. Neurologists came and prescribed different anticonvulsants. It's sorry it's a week late, it might have prevented that damn fit. Stergios is coming tomorrow morning again, he will discuss Otto's chances with top radiologist.

5 August, Sunday
Otto is deteriorating. I'm terrified. There's nothing anyone can do. They're just keeping him as comfortable as possible at PICU. Stergios came yesterday and today. Otto is on the emergency list for the radio and they'll have to transfer him between here and the Marsden every day to do it. For the first time, he looks worried. Everyone does. No chemo can help Otto anymore, it can only make him more ill (if such a thing is possible) and then he can't get radio therapy. Stergios is also angry that the neurologists didn't prescribe different/stronger anticonvulsants to prevent the massive fit. He said if they don't do something now, that he'll take over that side of Otto's care as well.
Yesterday morning Otto extubated himself (pulled the tube out of his nose) and is breathing on his own. His mobility is worsening, the little arms shake when he tries to pick them up. His eyes aren't focusing. He tried to get on his hands and knees in bed, but he couldn't.
At least he gave me a kiss this morning and tonight he nodded his head for a story, and he also put his arm around my neck for a hug.
He's on a Lorazopan infusion, because he's extremely agitated and it could be fitting. It makes him even more drowsy. Eyes can hardly open. When Claudia rang tonight I burst into tears. My little son is disappearing. I just want to know how the hell we ended up here, back to square one. What happened? Were the last 7 months in vain?

3 August, Friday
This morning 6:10 we were woken by an unfamiliar sound. Otto was having a massive convulsion, his limbs flying about, his chest rattling struggling to breath. I immediately ran for the phone and dialed 999 while getting the Midazolam (this is the fast acting anticonvulsant, that was given us in January when we came home the first time, in case of emergency). The convulsing subsided a little while we waited for the ambulance. They take Otto and Paul to the Royal Surrey. Luca and I follow by car. Otto was intubated and a part of his right lung collapsed (they're not certain if the tube or the fit caused the lung to collapse). They rang a retreavel team from St. George's to fetch him. After hours, they still had to do a CT scan, draw fluids from the shunt, insert an NG tube and catheter (this is for bladder relief, because the morphine can stop urinating) and the ambulance they sent broke down, I go with Otto in the ambulance to PICU at St. George's. I'm glad he's under heavy sedation, the morphine and IV Midazolam. They put in 3 canulars as well. I feel so sorry for my boy, he does NOT deserve this! It's so unfair.
Fortunately we got a room at Ronald McDonald House and since Otto is sedated Paul and I can both go to sleep. Yesterday I had this premonition that if we go to hospital today, then we won't leave again. We had an appointment at the Marsden today to start planning for the radio therapy. Last night at 11 Otto vomited and we left the feed off. I had a feeling it had to be off.
It's Tessa's birthday today.

2 August, Thursday
Otto's been lying in bed all day. He came downstairs once for 5 minutes. He just lies there, doesn't want to do anything, sleeps for a while. It's killing me. I'm sitting with him, reading, until Maya comes upstairs to disturb Otto. She can't stay away for too long. I take her back downstairs every time, Otto doesn't want to be bothered. He tosses and turns, can't rest, but is so tired. I give him Calpol for the pain and tell him it's going to make him feel better, but after a while he says 'I'm not getting better mummy'. At one point he asked me to sleep with him and I lay down beside him, but only for a couple of minutes, before he said, 'That's enough sleeping with you mummy.' It's as if he's retracting himself from everything around him. [These are the last 2 conversations I had with Otto. He didn't really speak anymore at this stage, only a few words, mostly 'thank you' when I gave him medicine or changed him.]
I can deal with the after effects of chemo because you know what it is and that it will go over again. But to know that this 'thing' is in Otto's head, getting bigger every day and it's making him feel rotten and the medicine isn't making him feel any better and he doesn't understand, drives me crazy.
We hardly told anyone this time, only Tess, George and my dad. Paul talked with Lottie today too. I can't put my fears into words, so I keep quiet. No one wants to know when it's not going well and things are bad.

1 August, Wednesday
Yesterday was the longest most boring day ever. We just sat and waited. I talked with Marios Papadopoulos who said he still can't do anything for Otto surgically and the shunt is definitely working. He starts Otto on Dexamethazone, steroids, and refers him to neurologists. They prescribed an IV upload of Phenitoyn and increase his oral meds. The steroids make Otto very grumpy and restless. He has terrible headaches. I feel powerless to do anything and is very scared they're not going to start the radio therapy in time.
Last night Paul and I slept at home. Ouma with Otto. Maya was at Nicola and Nelis's, we fetched her at 10. I fetched Ouma and Otto this afternoon, he was in high spirits. One of the other families there gave him a little teddie bear when we left. Otto is still very tired all the time, headaches, walking unsteady but refuses help, eats nothing. I emailed Claudia this morning and she rang me later. She's so nice.
This is such a shit disease, to see the destruction it causes breaks me heart. It is so much stronger than Otto and is only kept at bay a little by meds. His life hangs by a thread.

30 July, Monday
We all went to the Marsden today. Paul too Otto for the CT scan. Initially it was only for his chest, but he insisted they scan his head as well. Stergios came to tell us that there has been some re-growth of the cancer. I'm a bit speechless and can't really take it in. According to him chemo will be a waste of time at this point and he wants to start with radio therapy as soon as possible. The planning will start next Wednesday and they have to make a mask for Otto. Then they sent us to St. George's to make sure it's not the shunt. We all went again. The drive in the car is so tiring for Otto. Paul brought Ouma and Maya home.
A neurosurgeon saw Otto and pushed a needle straight into the shunt, to draw out some fluid. Poor Otto, it must have been horrible for him. It isn't the shunt. The doctor says we can go home tomorrow, but I wonder. I think they've already waited too long and that Otto's life is in serious danger. Paul sleeps with him tonight, there's no space for me and Luca there.

29 July, Sunday
We all went to town today for a bit of retail therapy and Krispy Creme's. The kids love it and always get hats and balloons. Otto had a fit when we got out of the car and was tired all day.

28 July, Saturday
Finally had some sunshine today. Otto's had no fits from Wednesday, until this afternoon in the car. Sigh. Yesterday afternoon I finally read the leaflet that comes with the Carbamazepine and Otto has a whole bunch of the side effects it lists. Head ache, stiff neck, joint pain, muscle pain, tummy ache, dry mouth, loss of appetite, lethargy, tired, drowsy, the list is endless. I called the Marsden and the doctor actually asked me if I noticed these things before or after I ready the leaflet. What a cheek she had, I was very upset. Anyway, she's not concerned about any of the symptoms except the slurred and inarticulate speech. I call the Royal Surrey and they said to come in to have the levels of the drugs in Otto's blood checked. They let us know this morning not to change anything. I'm grateful the fits are getting fewer, but at what cost? Otto's feeling so extremely poorly.
We went to Nicola and Nelis for lunch today. Took all 3 kids. Otto just lay on the sofa, Luca sat in a corner, and Maya ran the show. I feel so bad for her, everybody comes down on her like a ton of bricks for basically being loud and excited. But her exuberance and enthusiasm makes Otto cry.

Otto's last smile on camera, Pictures by Ouma Andree

25 July, Wednesday
Went to see Stergios today. Saw Michele first and she says the walking is better, but she can also tell Otto's worse than last time we were there. Sat the whole afternoon and waited for Stergios. He only saw us at 5 and our appointment was at 2. He says the reason why Otto's feeling poorly all the time is because of the anti-fit drugs that have been increased. It causes the lethargy and reduces appetite. It's not the shunt. He's mostly concerned about Otto's chest. He says if Otto's chest isn't completely well, we're not going ahead with the transplant, then we'll start with the radio therapy straight away. He won't give anymore antibiotics, because there's no fever. Otto just has to get better by himself. He also won't give him anymore maintenance chemo, Etoposide, no more. He would rather keep the stem cells for a relapse. He has lost 2 kids already during the transplant, it's too dangerous for Otto at this point. The risk is 2% to start with, but when you start with a poorly child it goes up considerably.
I'm glad the chemo is over, I had a bad feeling about the transplant, but I've got a bad feeling about the radio as well. I've been a little bit reassured about Otto's state. Don't really know what to think anymore. I feel like I'm holding my breath until the end of treatment.

24 July, Tuesday

To a mother's eye, Otto looks way too grown-up for his 4 years and 9 months - he was so very brave

22 July, Sunday
Little Luca is also christened now. I definitely had the feeling that this is the 'last time', all the children have been christened, the family is complete. Otto came with in his buggy. Only Paul and I went on the stage with Luca, didn't bring the whole family. Johan and Lizanne also came. Went home afterwards and had lunch from 11 - 3! It was very nice and I enjoyed it. Otto didn't have anything, only sips at his milk.

21 July, Saturday
I've got a terrible feeling about Otto and it's scaring me. His bloods are fine, but he's just not himself. I've been thinking that perhaps he's depressed. Something is always hurting: arm, leg, head, tummy. He's not eating or drinking. He's tired all day. And then there are the fits. We were at hospital on Thursday again. They put the medication up again and we're getting an appointment to see the epilepsy expert. I'm starting to feel ill about my child and I'm scared about the future and what it holds for him. Paul took him to the cinema today to see Shrek III. I think he enjoyed it, he tried to tell me what he could remember. Paul said he was tired throughout and not much interested. All I want to do is take him back to the Marsden.
My mum and I went for some retail therapy today, the sales are on. Felt a little better when I got home. Bought fish and chips, then Martin and Mercia arrived. We cooked and baked for tomorrow.

18 July, Wednesday
I'm getting scared and very worried. Otto is nearly like he was in the beginning of the year.

17 July, Tuesday
Ouma's birthday. Had a really nice meal to celebrate.
Yesterday Otto had 2 fits on the way to the hospital. It was the hearing test. The consultant says Otto has glue-ears, water stuck behind the eardrum. Usually they give gromits for this, but he says the easiest thing for Otto would be hearing aids so that he doesn't have to have more surgery. But there is definitely high frequency hearing loss, the glue-ears causes low frequency loss. So we'll wait until after treatment and then test again. But Otto did weird things during the test. He had to name little toys and he called the 'duck' a 'pig'. The doctor at Hascombe ward checked Otto over and after a talk with Stergios put the anticonvulsants up again. I think it might have worked, because today has been fit-less. Otto didn't lie on the sofa all day and had something to eat.
Went for the EEG this morning. It was fine, they stuck a million little probes on Otto's head with gel and put a net over it. Then he had to sit in a chair while they recorded the readings. The lady also flashed light in his eyes, but most of the 20 minutes the test lasted Otto could watch TV.
Luca had his first jabs today and has been sleeping all day.

Kids catching bubbles

15 July, Sunday
We went for a pub lunch today to celebrate Ouma's birthday. Anton, his mum and 2 boys came along. As we got into the car to leave Otto had a fit. When we arrived at the pub he had another fit. The same as always, flushed face, can't speak, and then just sleep afterwards. We try to do something normal and the cancer is just always there. It takes over everyone and everything. Otto was so tired after the fits and complained of headaches. I've got such a bad feeling about all of this: the fits, the coming transplant, the radio therapy. I think I thought everything was going to get better at some point, and it did, but now everything is going backwards again. The last few days Otto's appetite has disappeared again, he vomited a few times yesterday, the fitting. It just feels as if something isn't right.

Otto slept in Paul's arms at the pub after the fits

He picked up in the afternoon and by bedtime read his favorite story, Gingerbread man, with Ouma and Maya

14 July, Saturday

13 July, Friday
We went to see Ockie (minister) last night about Luca's christening next week. We got the blue badge for the car. How sad that we need it, but it is very convenient. It does make things a bit easier. Linda arrives tomorrow, Minette's baby is due soon.

Picture by Ouma Andrée

11 July, Wednesday
The more I think about the radio the more I wish we don't have to do it. Maybe it's just fear for the unknown, but I have a bad feeling about it. I guess I'm scared it will change Otto. I've done a few searches on the internet (I know I shouldn't) but everything I see concerns me. This disease is so shit. I wish I could take Otto on an aeroplane with me somewhere and leave the cancer behind. Why did it happen to him? There's no point to it.

Going to the park - the sheep statues were a favorite of Otto's

9 July, Monday
Today was the big day with Stergios. He said that when he looked at the scan he thought that the cancer was gone, but there still is something left. He says to imagine it as a thick layer of snow that covered Otto's brain and spine, but now it has melted down to nearly nothing, but there are still smatterings left here and there. If, at this stage in treatment there is still tumor left, then radio therapy is definitely required. I'm devastated by the news. 5 1/2 weeks of radio and before that still the transplant. Stergios says it's going to be very bad. I'm finding it really hard to see the 'good' in the good news. He looked so happy when he told me and to be honest disappointed at my lack of excitement hearing the news. I just want to cry. The other bad news is that Otto's hearing will probably deteriorate even more from the next lot of high dose chemo that he'll get before the transplant.
But on the bright side, Michelle the physio thinks that Otto will completely recover physically. This weekend I thought his back wasn't straight, but after spending some time with him, she sayd there wasn't a problem. It's probably his pelvis that is still weak and Otto over-compensating to keep his balance. He needs a few sessions on the gym ball to rectify this.

The kids

Email sent 9 July
“So, hi there everybody, here I am again,
It was a big day for us today when we went to the Marsden to get the results of last week's MRI. In general it's all good news and positive, but not quite the end of therapy.
Otto's consultant, Stergios, said that Otto responded amazingly well to the chemotherapy. He had to look twice at the scan pictures to see any disease left, at first glance it seems to have all gone. This is absolutely amazing news!!
When you look at Otto today, you can't recognise the ill little boy from 6 months ago. His hair is starting to grow back and he looks really well. The last 6 weeks at home has done him the world of good and he's gone from strength to strength every day. At first Maya was being the dominant one too, but Otto is finally starting to assert himself and setting the sibling-hierarchy back in order. He also had a few tumbles at home, from weak muscles, but this hasn't happened for a few weeks now, and he is doing a lot of walking by himself now already and is even trying to run a bit. We just have to work on his posture with the physio, because his pelvis needs some work to straighten him out.
So what this all means for Otto's treatment. According to Stergios, once you get to this point of treatment and there is still some of the tumor left, the best way forward is with radiotherapy. And to keep that as short as possible (which in our case will be 6 weeks), is to do the stem cell transplant first. So this is what we'll do mid-August. Otto will get very ill again from the high-dose chemo they give him before the transplant, and we'll be in hospital for at least a month, if not longer. The theory is to give him a really high-dose of chemo which wipes out all the tumor that's left, but unfortunately everything else as well. Then they give him back his stem cells, which they harvested a few months ago to boost his immune system and help him to recover. I'm not sure how long they wait after that to start the radiotherapy. But fortunately we can do that as an out patient, just driving in to hospital every day (excluding weekends).
Until then, we're just enjoying being at home and the little things in life, like sibling rivalry which has taken over the household it seems:) The weather's not helping. I've also just discovered the wonderful world of Facebook (I know I'm a bit slow), so you can keep track of recent pictures here:
http://www.facebook.com/album.php?aid=8390&l=e3a5d&id=732025671 [not available anymore]
Lots of love to all, and thanks to all for the support and prayers and positive thoughts over the last 6 months.
Lisl, Paul, Otto, Maya and Luca Xx”

8 July, Sunday

Our angel
The weekend was uneventful. The sun was shining actually and we made 'potjiekos' with Nicola and Nelis today.

Nelis and Nicola

Maya and Otto having biltong

7 July, Saturday

Otto looking at his best this year (07-07-07), just before he started to deteriorate again

5 July, Thursday
Otto had 2 fits this morning. They were small and didn't last very long. He still tried to speak through them, but the words didn't make sense. We were at the Royal Surrey all day. Finally they said to put the Phenytoin up with 1ml and sent us home. I really thought the fits were going to disappear when the cancer goes, but what does this mean? I've got fantasies about Monday when Stergios will tell me the cancer is all gone. But what now? Fuckit. I really wish this was all over or just a bad dream.

Reading time with Ouma

4 July, Wednesday
The MRI was yesterday. It went fine. Otto really hates the GA and fights against it. We're only getting the results on Monday. Eileen will write a letter to the new school in Haslemere, hope we can get a placement for Otto there.
Had Luca weighed today, 6 weeks 5,61kg. Big boy. We went to visit Carin today in Fleet. Matthieu was at nursery, but Otto still had a good time. All he really wants is to go out and be a part of life again!

Otto trying to take a nap

1 July, Sunday
Concert for Diana. She would've been 46. We drove around Haslemere today and it looks very beautiful. It reminds me of the Garden Route in SA. I think Otto is going to need hearing aids. He has another test in a few weeks and I'll ask then.

The kids posing for mummy

28 June, Thursday
I can't even remember what happened this week. Tonight Otto had his last chemo at home and he's still fine. His blood counts haven't fallen yet. I took Maya to playgroup for the first time this year (Ouma usually takes her).
I spoke with the Disability people and finally understand how it works. The payments only start 3 months after diagnosis, but they start counting the 84 days in hospital from the start. It's unfair if you ask me.
Yesterday I put everyone in the car and drove to the post office. Just to get out!
And Otto stood on his own and peed today!

25 June, Monday
Yesterday we all started to show signs of cabin fever. Maya's fever is still up and down. Luca is breastfeeding all the time and Otto just wants to play with the play dough. When night came I was losing it a bit. And then Luca struggled to fall asleep. Maya was waking through the night because the fan has to be on in her room and makes a huge noise and is obviously cold as well. Paul said he changed Otto 6 times! I don't know how we do it.
This morning we were up at 6 again, off to the Marsden for the GFR test and heart echo. It was very interesting to see the heart on the echo and Otto was very sweet. He had to lie really still for quite a long time. Straining to see the screen, he told the lady who did the scan that there was somebody living in his heart. He thought about it for a while and then told us very solemnly that Jesus was living in his heart. The scan lady was very nice about it and confirmed this. We saw Stergios after this. Otto's chest is sounding better, but the influenza virus is still in his blood. It's possibly the Cyclophosphamide and Themozolomyde that affected his red blood cells so that it can't get rid of it. The lung specialists said that they didn't think extra tests were necessary and to treat the flu with Tamiflu (the bird-flu medicine). The transplant has also been delayed with a month.
Claudia was there with Christian. It's nice to chat with her. She knows immediately what you're going through without explanations because she's dealing with the same things.
Finally we went home, Ingrid was here again today on her way home. Tess said she's bald already. Otto's hair and eyelashes are growing back.

23 June, Saturday
What a crazy day. Paul went to work. Maya woke up at 5:30 with a fever. Put her on the sofa after more paracetamol, but she was grumpy all morning. Then Otto had a fit. His face turned red and his eyes just stared, no reaction. I thought he was having an allergic reaction. It was over quickly but I dialed 999. When the ambulance arrived, he was himself again and playing. I rang St. George's and the Marsden. St. George's says it's the anticonvulsants that need readjusting. When I rang the Marsden I spoke with Jo who very nearly interrogated me and at the end asked for Otto's blood counts of Thursday. I didn't have it in front of me and thought I didn't have them at all and he just went off at me about how he has to take care of really ill children and he doesn't have time to track down blood counts. He didn't sound too pleased that I wanted to speak to Stergios personally, because he wanted to know if there were any changes with Otto. Anyway, Otto was fine the rest of the day.
Maya was warm and poorly and I gave her more Calpol. At around 4 o'clock she came to sit in my lap and she literally hung on me. When I wanted to put her down I noticed she was just staring at me. Ouma ran for some cold water, because she said that's what she looked like when she had the first fit. I actually felt her overheating when she was sitting in my arms. Rang 999 for a second time today. There was a bit of foaming from her mouth and then vomiting, just as Paul walked in the front door. Maya came round but was very shaky. Paul went with her to the A&E in the ambulance, Luca and I followed. They just gave her Nurofen, observed her for a while and sent her home.
Jo rang again and spoke with Paul. We have to continue with chemo was the message and he also apologised for before. (He was obviously having a bad day.) He said Stergios wanted to see Otto if he had another fit.

Brothers bonding

22 June, Friday
We had another horrible experience at hospital yesterday. Had to take Otto to the Royal Surrey for yet another MPA (where the sample of phlegm is sucked out of the nostril - I call it the snot-test). The physio did it this time, not a nurse. She pushed the tube so deep into Otto's nose, with me gripping his head, that he said his eye was hurting afterwards! I've decided that this was the last time they do that test. I'm so sick of the local hospital I hope we never have to go back there again. We've been at 3 hospitals this week. I'm so fed up with it.
Otto asked me today for the first time why he doesn't go to Nursery anymore. I told him he'll go back when chemo is finished and that satisfied him. Maya and him plays so nicely together now, they just need a bit of guidance. Maya was a bit poorly tonight and I put her in bed with Calpol for the fever. Otto hasn't been sick since Wednesday.

20 June, Wednesday
Ouma and I drove to St Helier this morning with the boys for Otto's hearing test. He vomited all over the reception area. The test itself went better than last time, but the doctor is quite certain that there is hearing loss. Otto vomited again on the way home in the car. I feel so sorry for him. This afternoon he was in good spirits again. Paul and I went to look at a house in Haslemere, loved it and put in an offer.

19 June, Tuesday
Well, chemo started. The 5th cycle.

Paul preparing the chemo in the garage
We saw Stergios this morning. He says Otto has to be in very good condition for the transplant, because it can be life threatening. We'll have to find out from the lung specialists and infectious diseases people about Otto's chronic chest infection. They'll confirm the dates for the transplant according to those results. The MRI is on the 3rd July.
Paul and I went to look at a house in Godalming today. I'm not really into this right now, but we have to keep looking. For now we just have to get through the next 2 weeks of vomiting, diarrhea, being ill and hospital.

Luca having a nap, oblivious to his chaotic family life

18 June, Monday
Father's day yesterday. Cooked a nice lunch. Went to the park in the afternoon.

Walking to the park, everybody in buggies
Today Solomon came to play. Talked with Stergios and he wants to see Otto before starting the chemo. The nurse called about the stem cell transplant with dates and appointments for GFR, heart echo, dental, hearing. The plan was to start 10 July, but we're already a week late again, so I don't know.

Maya and Otto doing his bubble-blowing exercise for his chest

16 June, Saturday
Otto could come home yesterday. He's only on 1 antibiotic per day. Still no chemo and the MRI has been postponed. Sigh. Otto is in very high spirits. He's just himself again, making a mess in the livingroom, crawling around - just going mad. Maya and him get along very well and they both adore Luca. Went for antibiotics again this morning at hospital and just at home the rest of the day.

14 June, Thursday
Maya's birthday. Was at hospital yesterday. Otto didn't feel well at all. His fever spiked again, 38 in the afternoon, but after that it stayed down. Slept nothing last night. First Luca, then Otto, then Luca, then Otto, and so on. I'm exhausted. Otto is better today, but he's still on IV antibiotics. Ouma, Maya and Paul came this afternoon to have a little party. And after that Otto could go home. Paul brought him and Ouma back to hospital to sleep here. He still has to get the antibiotics through the Hickman line. We still don't know when we can start the chemo. I'm going through a low again.

Maya's party in Otto's special playroom in Hascombe Ward, it was separate from the official playroom because of Otto's isolation

13 June, Wednesday
Luca and I were at the Marsden again yesterday for half the day. To pick up the chemo. And it wasn't ready. Got it eventually, and they only gave me the Etoposide, not the Themozolomide. The pharmacy lost the prescription. Sigh. At least I got time to sort out the Disability and Carer's Allowance. You're only allowed 84 days in hospital, after that the payments are stopped. I don't understand it because you're still with your child 24 hours and giving the same care as you would do when you're at home. Claudia was there as well, and it's always nice to see her.
Yesterday I kept on taking Otto's temperature, it was around 37.5 all day, until 8 o'clock when we wanted to give the chemo when it went up to 37.9. The Marsden said to not give the chemo and go to our local hospital. So I packed up the 2 boys (so much stuff) and slept at the Royal Surrey. The fever didn't go back up again, but Otto's coughing and diarrhea are worsening again, he's complaining of tummy ache and his bottom is sore. Paul was so excited to build the Scalextric last night and poor Otto was too tired to play. Now we're waiting to here if we can go home. Otto's granddad turned 60 yesterday.

11 June, Monday
We had a great day with Ingrid yesterday and it was our first day out as a family this year. We went to Newland's corner for coffee (Otto's favorite spot), then to Paul's favorite fishing spot and after that to a pub in Albury for lunch. The kids had a lot of fun and so did we. Otto even went down the slide (with our help) and Maya met a little boyfriend wearing a Sharks jersey! Paul went fishing for a while and we had a BBQ in the evening.

Newland's corner with Otto's 'tree house' in the back ground

Today was a nightmare. Spent the whole day at the Marsden. Otto had a GFR (kidney) test, Luca and I took him. The rest all went to Hamley's - how unfair. At first Otto was concerned that we'd have to stay at hospital, but relaxed after it got through to him that we weren't staying. He had a good time in the playroom and made a few cards. It wasn't very nice to be there on my own with the 2 boys, they are physically both very demanding and it was quite a challenge to juggle the two. Stergios is very pleased with Otto's progress. He said the Headstart treatment he is getting, standard in the UK for his type of cancer, has been stopped in the USA because it's too toxic. I wonder if he means for the immediate effects or on a longer term basis. But it's still the best treatment for Otto. After the MRI next week they'll decide about dates for the transplant. If he's going to get radiotherapy, then he won't get the transplant. Stergios thinks it won't be necessary, let's just pray it is true. At

17 August, Friday

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11 August, Saturday
Otto died at 11:50. Paul and I were with him. About an hour after Frankie and Lenèe arrived. I'm sure Otto was waiting for Frank, I told him earlier in the week he was coming. Otto looks like an angel, all the pain gone from his face. He's my baby again.

29 July, Sunday
We all went to town today for a bit of retail therapy and Krispy Creme's. The kids love it and always get hats and balloons. Otto had a fit when we got out of the car and was tired all day.

24 July, Tuesday

To a mother's eye, Otto looks way too grown-up for his 4 years and 9 months - he was so very brave

18 July, Wednesday
I'm getting scared and very worried. Otto is nearly like he was in the beginning of the year.

14 July, Saturday

13 July, Friday
We went to see Ockie (minister) last night about Luca's christening next week. We got the blue badge for the car. How sad that we need it, but it is very convenient. It does make things a bit easier. Linda arrives tomorrow, Minette's baby is due soon.
Picture by Ouma Andrée

8 July, Sunday
Our angel
The weekend was uneventful. The sun was shining actually and we made 'potjiekos' with Nicola and Nelis today.
Nelis and Nicola
Maya and Otto having biltong

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1 July, Sunday
Concert for Diana. She would've been 46. We drove around Haslemere today and it looks very beautiful. It reminds me of the Garden Route in SA. I think Otto is going to need hearing aids. He has another test in a few weeks and I'll ask then.
The kids posing for mummy

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17 August, Friday

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11 August, Saturday Otto died at 11:50. Paul and I were with him. About an hour after Frankie and Lenèe arrived. I'm sure Otto was waiting for Frank, I told him earlier in the week he was coming. Otto looks like an angel, all the pain gone from his face. He's my baby again.

29 July, Sunday We all went to town today for a bit of retail therapy and Krispy Creme's. The kids love it and always get hats and balloons. Otto had a fit when we got out of the car and was tired all day.

24 July, Tuesday To a mother's eye, Otto looks way too grown-up for his 4 years and 9 months - he was so very brave

18 July, Wednesday I'm getting scared and very worried. Otto is nearly like he was in the beginning of the year.

14 July, Saturday

13 July, Friday We went to see Ockie (minister) last night about Luca's christening next week. We got the blue badge for the car. How sad that we need it, but it is very convenient. It does make things a bit easier. Linda arrives tomorrow, Minette's baby is due soon. Picture by Ouma Andrée

8 July, Sunday Our angel The weekend was uneventful. The sun was shining actually and we made 'potjiekos' with Nicola and Nelis today. Nelis and Nicola Maya and Otto having biltong

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1 July, Sunday Concert for Diana. She would've been 46. We drove around Haslemere today and it looks very beautiful. It reminds me of the Garden Route in SA. I think Otto is going to need hearing aids. He has another test in a few weeks and I'll ask then. The kids posing for mummy

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11 August, Saturday
Otto died at 11:50. Paul and I were with him. About an hour after Frankie and Lenèe arrived. I'm sure Otto was waiting for Frank, I told him earlier in the week he was coming. Otto looks like an angel, all the pain gone from his face. He's my baby again.

29 July, Sunday
We all went to town today for a bit of retail therapy and Krispy Creme's. The kids love it and always get hats and balloons. Otto had a fit when we got out of the car and was tired all day.

24 July, Tuesday

To a mother's eye, Otto looks way too grown-up for his 4 years and 9 months - he was so very brave

18 July, Wednesday
I'm getting scared and very worried. Otto is nearly like he was in the beginning of the year.

13 July, Friday
We went to see Ockie (minister) last night about Luca's christening next week. We got the blue badge for the car. How sad that we need it, but it is very convenient. It does make things a bit easier. Linda arrives tomorrow, Minette's baby is due soon.
Picture by Ouma Andrée

8 July, Sunday
Our angel
The weekend was uneventful. The sun was shining actually and we made 'potjiekos' with Nicola and Nelis today.
Nelis and Nicola
Maya and Otto having biltong

1 July, Sunday
Concert for Diana. She would've been 46. We drove around Haslemere today and it looks very beautiful. It reminds me of the Garden Route in SA. I think Otto is going to need hearing aids. He has another test in a few weeks and I'll ask then.
The kids posing for mummy