winchy.com
Welcome to Maddie's Story
Madison Jane Winch was
born in Melbourne, Australia on 12th April 2000. She has developed
into an extraordinary little girl. Her full story starts at the
bottom of this page.
Saturday 12th April 2003
Today would have been Maddie’s 3rd birthday. The despair we feel today is magnified a thousand times more than any other day since Maddie’s death. The question of what might have been just goes round and round in my head in a never ending circle. The sick in the stomach feeling we had many, many times last year is back with a vengeance today.
It’s very difficult to reflect on the happy memories today. Maddie never had a chance to know what a birthday was all about.
We’re constantly reliving 2002 as every day goes by. It’s just over a year since Maddie was diagnosed. Everyday since that anniversary acts like a vivid reminder of what we all experienced. One year ago today Maddie was being prepared for surgery to have a shunt inserted into her head. I begged the doctors not to let her have surgery on her birthday. They didn’t listen to me. Looking back I’d wished they’d made that little concession. The memory of leaving Maddie in the operating theatre on her birthday is an image I’m never likely to forget as each birthday passes.
We have left her bedroom pretty much like it always was. Occasionally we go in there and sit quietly reflecting on the past two and half years. It’s very hard to be in there for long. It’s where Maddie belonged and where the physical reminders take their place. I don’t know if I can bring myself to go in there today.
I thought Christmas was a difficult time to bear. Today is impossible.
Wednesday 5th February 2003
A few weeks have passed since my last entry and I’ve got to say it’s not getting any easier knowing what to say. I so much want to continue what has been created here but I’m struggling to cope with writing this stuff down. What was difficult to do when Maddie was alive is now becoming impossible now that she’s gone.
Whilst I’m back at work and look relatively composed from the outside, that’s far from the truth. The pain and anguish rips into my stomach, my head, my heart, everywhere, everyday.
Our routines have changed so much. I guess having more than one child you would continue to do a lot of the stuff that you’re used too like bathing, making dinner, playing around. That’s all been taken away from us given Maddie was our only child.
I miss her. We miss her. The whole family misses her. I find reflecting on the good times makes me even more sad because I want her back just that way. Somedays I just want her back in any condition – even if she was dead. Just to hold her once more. I would give anything for one more kiss.
We’ve been trying to keep busy and have been going out a lot and “enjoying” ourselves. It’s all a bit of facade really when I think about it. Nothing will ever be the same anymore.
Saturday 11th January 2003
Georgia and I returned from our time away a couple of days ago. The first thing I did was go in and sit in Maddie’s room and howl my eyes out. Being away almost gave a false sense of what has happened. I expected to see Maddie again when we came home.
It will be 4 weeks on Monday since Maddie died. It seems like yesterday but it also seems such a long time ago. The visions of Maddie’s last few moments are constantly going around in my head. Nightime’s are the worst. The sound of her final breaths seems so vivid every time I put my head on the pillow. I’m sure this will haunt me for the rest of my life.
There are many, many people we want to thank and will do so over the coming weeks. I haven’t yet decided how exactly to do this but I guess we’ll work that out.
I’m not too sure what to do with the website either. I’m not sure if writing more stuff is a helpful thing or not. I do know that I want to keep the site up as a resource for any parents who may have to experience this horrible nightmare we have lived. I know that we were crying out for real life stories when Maddie was originally diagnosed. No amount of medical books and web sites can give you the insight that a real life story can.
Friday 20th December 2002
I’ve finally decided to sit down and attempt to write something about the last few days. A lot of you who have been keeping tabs with Maddie’s story were present at her funeral yesterday and it was wonderful to see all those faces – many of whom have played major roles in supporting us through Maddie’s illness.
Maddie had a simple, beautiful and very emotional farewell. There were many tears and the occasional smile as we all remembered her in our own special way. I was very apprehensive at the beginning of the day and as the time got closer tried to remain composed and think about how I might feel. I don’t think I could ever have been prepared for how I felt pulling into the church driveway in the funeral car. It was a very surreal feeling like I was dreaming and that all these people waiting were imaginary and this whole thing wasn’t really happening.
Unfortunately it wasn’t a dream and walking into the church was the most difficult part yet. Tears streaming down my face I wanted to turn around and run away. We hadn’t seen Maddie’s coffin before and it was a very big shock to be confronted by it. I just couldn’t get over how small it was and the images of Maddie lying inside were pushing through my head and scaring the hell out of me.
Aunty Caroline reflected upon Maddie’s short life and her impact on everyone around her. We were truly touched that she could firstly, remain so composed, but, secondly, to be able to put together all these words in a matter of days since Maddie’s passing. It was uplifting stuff and we even managed a few smiles along the way.
I so much wanted to carry Maddie’s coffin out of the church by myself – as a final gesture of what Daddy could do for her. In the finish I had to give in to reality and realized it would be a little awkward for me to do it on my own. Grandad and Uncle Paulie helped me carry Maddie out and it will go down as the longest 25 steps of my life. I couldn’t bear to look at anybody as we made our way down the aisle and out to the car. The sense of being in a dream had well and truly vanished by this point. This was reality at its harshest.
We took Maddie off to the crematorium with the family and this is something I’m not comfortable talking about at this point in time.
As we made our way back to Bibby and Papa’s for something to drink it was very much a time of reflection and I couldn’t help asking myself ‘what the hell do we do now ?’. It all seemed so final. I think just then it dawned on me that I would never see Maddie again – not in this lifetime anyway.
We are taking a couple of weeks off ‘our normal life’ ( whatever is normal anymore I’m still trying to work out ) to spend some time together and prepare ourselves for the next few months, which will undoubtedly be very, very hard.
Tuesday 17th December 2002
Maddie’s funeral will be held at St Peter’s Anglican Church at Were St, Brighton on Thursday 19th December at 10.00am. Georgia and I would like to see the many people who have been touched by Maddie and her remarkable journey.
I will attempt to write some more words after the funeral. I’m not really in the frame of mind to do much at the moment.
Monday 16th December 2002
Maddie passed away peacefully at 3.11am this morning. I was so proud to be able to hold her hand and her heart when she left us. She was at home where she belonged and we are forever grateful to the wonderful support we’ve had from our family, our doctors and the Bethlehem Palliative Care team nurses over the past couple of weeks.
Sunday 15th December 2002
Maddie has deteriorated rapidly over the last couple of days. She is still clinging to life by the barest of threads. She continues to defy us all – the doctors and nurses included – with her strength and determination and will to live. We are praying so much she will let go and be at peace.
Her breathing is very shallow and her pulse is very weak. It should only be a matter of hours now.
Thursday 12th December 2002
Maddie is heavily sedated and has been asleep for the last 24 hours. She wakes occasionally for a little drink but not very often. It appears like the tumor has progressed further. The back of Maddie’s head is very blown up with fluid along with a large lump in the middle.
There has been a noticeable difference in her appearance today than from yesterday. She is very pale and looks to have deteriorated further. It’s comforting to know that she is comfortable and not in any visible pain.
Wednesday 11th December 2002
The last two days have been a living hell. Maddie has been very restless and agitated and at times seems delirious. We have increased the morphine and midazolan doses but they haven’t had a huge effect. Maddie was awake all of last night and it has now come time to give her a stronger sedative.
It is very distressing to see her so upset and we need to calm her down for her own comfort and for our own sanity. I can’t even begin to describe how difficult this time is. Each day we try to refocus and draw some strength for what lies ahead.
Monday 9th December 2002
Maddie is still fighting on. She occasionally wakes up for a few minutes and has a little drink. It’s comforting to know she knows we are there. The nurse is going to increase the morphine levels today as Maddie has been complaining of a sore head when she has woken and she also seems very agitated.
Saturday 7th December 2002
Maddie is now almost permanently asleep. Her breathing is very shallow and she can hardly acknowledge that we are there. The doctor agrees that it’s only a little while now.
I am so proud that we have been able to create a peaceful environment for her at home without having to go to hospital again. We so much wanted Maddie to be in her familiar surroundings with all her toys and books and Hi 5 videos and Mummy & Daddy and we’ve managed to achieve that.
Still it is so, so difficult waiting and knowing there will be no reprieve but not knowing when Maddie will fly away.
We have a sign on the front gate to keep people away (except medical people) as it’s been too overwhelming these last few days. I understand the family have their own needs but right now we’re feeling very selfish and do not want to share Maddie with anyone else – not for a single minute. We are scared and frightened and angry and most of all heartbroken. It is not fair that this horrible disease can strike without fear or favour on someone so young. Our daughter.
I’m probably ranting a little by now but I’m just typing without really thinking, just what comes out. I’m terrified to go to bed and turn the light out. Night time we feel so alone and so vulnerable. Aunty Caroline is staying with us and she’s our security I guess in case we lose it altogether.
Thursday 5th December 2002
Maddie is now asleep most of the day and night. The doctor increased her morphine levels and she is a lot more peaceful in between vomits. We’re feeling that the time is getting nearer now.
I just want Maddie to be comfortable and go peacefully in her sleep.
Wednesday 4th December 2002
The last couple of days have been a real rollercoaster ride. We had the people from the Community Palliative Care come out to see us yesterday and put in place the plans for Maddie’s needs. We have started to give Maddie morphine on a regular basis as she is experiencing some pain and we want to keep her as pain free as possible.
She had quite a good morning yesterday and managed to sit up and play in her room for a couple of hours but was very tired afterwards and slept most of the afternoon.
Maddie gave me a huge fright last tonight when she grabbed my hand tight and sat up off her bed and screamed she had a sore head. She had another vomit soon after and we had to get the nurse out to give a morphine injection. It’s getting difficult to keep the oral medications down now so Maddie had a little butterfly put in her thigh so we can give her injections as they are needed.
She slept all through the night so hopefully will have a peaceful day today aswell. We will keep visitors to a minimum today to ensure a quiet day.
Sunday 1st December 2002
Maddie sat up for a little while this morning but has spent most of the day lying on her couch. She’s been sick quite a few times so the doctor came over tonight and gave her a jab to try and settle that down.
I am finding it very difficult to hold things together seeing Maddie deteriorate so quickly. A week ago she was still up and about and now she can hardly lift herself off the bed.
Friday 29th November 2002
Maddie has been spending a lot of time lying down and has been sick a couple of times today. In between times she seems ok and is happy enough but this doesn’t last very long. She can’t walk on her own without falling over but can still manage it if she holds on with both hands. Her sense of humour remains intact though – she thinks it funny every time she lands on her bottom.
I called the hospital today to request some pain relief and anti nausea drugs for Maddie should the need arise in the next couple of days. Maddie’s doctor was in touch with our GP and he came to visit tonight to organize all this.
It’s been a very long and difficult few days with the realization that Maddie may not be with us for very long continually playing on our minds.
Wednesday 27th November 2002
Maddie had a vomit on the way to the hospital this morning, and in conjunction with her unsteady balance and inclination to want to lie down, has us very worried. Our doctor did his own observations and has suggested that there has been some progression of the tumour in the rear brain.
It’s all very well to talk about how Maddie might deteriorate but to see it happen in front of our eyes is heartbreaking. It could be early days yet. Nobody knows. It is the fear of the unknown that has been the greatest hurdle all the way through.
Sunday 24th November 2002
We arrived home from Perth on Friday night after a terrific week and a bit. Maddie loved the time away and really enjoyed the time with Gramby and Grandad. I have added photo gallery 4 with some of the moments we captured.
Maddie has been quite unsteady on her feet in the last couple of days and we are feeling a little unease at what could be the first subtle sign that something is going on.
We put up our Christmas tree today and lots of decorations. Our thoughts have turned to focusing on the next few weeks and hoping Maddie can make it through Christmas ok. As always though it’s one day at a time.
Friday 15th November 2002
We flew over to Perth yesterday for a week to let Maddie’s WA grand parents spend some time with her. Maddie had a ball on the plane and really enjoyed the landing. That was reassuring for us as we we’re a little nervous taking her on the plane for the first time. As always she took it in her stride.
Monday 11th November 2002
The news just gets worse. There are two areas of concern in Maddie’s spine - one at the top and one at the base and who knows what in between. They could potentially cause trouble with movement, pain etc if they take off, so we are only hoping like hell that the tumours in her brain take her peacefully.
We are now looking at weeks maybe months. It is especially difficult to comprehend and understand seeing Maddie well and enjoying herself at the moment.
I can’t write anymore tonight. It hurts too much.
Saturday 9th November 2002
Maddie had her spinal MRI yesterday. We won’t know the results until Monday however we’ve all but decided not to proceed with any new chemotherapy. The best case scenario is Maddie’s life may be prolonged for a few months, but at what cost. There are always risks associated with any drug and right now we are not prepared to take any more risks.
We want Maddie to be at her best for as long as she can be. There is no cure and there will be no miracles. So we are moving forward and will enjoy every day that Maddie is with us.
This has been an incredibly difficult week and has been helped greatly by the messages of support we have had from all over the world. Maddie truly has touched a lot of people. People we don’t even know but are their in spirit.
I have updated the photo gallery 3 with a lot more photos. Many are nothing more than Maddie enjoying herself but hold much significance to us.
Thursday 7th November 2002
We saw Maddie’s scans yesterday and were shocked at what we saw. There are 7 new spots including a sizeable mass in the rear hemisphere. The ironical thing is the original tumour site is clear. Maddie has to have a spinal MRI tomorrow to see if it’s spread down the spine. As it stands today Maddie is not expected to live more than 6 months.
Surgery is not an option and Maddie is still too young for radiation treatment. Our only option is to try some low dose chemo which might be able to slow the growth of the tumours. We have yet to decide whether we will pursue this option. We have faced the reality that Maddie is going to die from this horrible disease and our prime concern now is her quality if life in the time she has left with us.
We have lost all hope. All we need is a miracle.
Monday 4th November 2002
We had a call from our doctor tonight with the MRI results. It’s the call we’ve always feared but never expected. The tumour is back. There’s also a lot of new spots.
We’ve got an appointment on Wednesday to discuss the results and where we go from here. There’s not much else I can say right now – we are absolutely devastated. We always knew this could happen but it’s still not something you can prepare for.
Right now Maddie needs all our love and support more than ever and that will be our focus in the next few days.
Thursday 31st October 2002
We’re getting ourselves all worked up again with the MRI only two days away. I thinks it gets to us sub-consciously even when we’re trying to think of other things. The worst part is waiting for the results afterwards. Hopefully someone will be on who can give us some details.
Thursday 24th October 2002
We had to take Maddie into hospital this morning as she has a nasty bruise at the tip of her left shunt. She must have hit her head right on the spot. We saw our neurosurgeon and she wasn’t too concerned. Best to be on the safe side I guess. The MRI date has also been changed to Saturday 2nd November.
Sunday 20th October 2002
We have a date for Maddie’s next MRI scan – Wednesday 6th November. There’s nothing to suggest it will be any different from the last one but you never can tell. I’m sure the few days leading up to it will be just as nerve racking.
Sunday 6th October 2002
We took Maddie to see Hi 5 in concert today at the Melbourne Concert Hall. She absolutely loved it but screamed and cried for Nathan to come back everytime he left the stage. For days Maddie kept saying she was going to see Hi 5 in real life.
Also had a walk down to the beach this afternoon and Maddie had lots of fun playing in the sand. I have added a 3rd photo gallery to cope with the number of photos now on the site.
Thursday 25th September 2002
Maddie had her monthly appointment today with our Oncologist. He is very happy with Maddie’s progress and mentioned if the next two MRI’s are clear we can organize to have Maddie’s port taken out.
The next MRI is set for early November. We’re not thinking about that just yet. We’re happy enjoying Maddie as she is and watching her make huge strides as each day goes by.
Wednesday 18th September 2002
Maddie’s hair has started to grow back in the last couple of days which is a great step forward psychologically for us all. It’s one more normal element that we’re slowly getting back.
Maddie also has a new trick. She gives herself her own medicine now – syringe in the mouth and with one big squirt it’s all gone. I wouldn’t have believed it until I saw it with my own eyes tonight !
Sunday 15th September 2002
Maddie has been walking quite well in recent days. The family got together today and walked 5km around Albert Park in the Very Special Kids Piggy Bank Appeal Trot. It’s an organization that provides support to families of children with progressive life threatening illnesses. It was lots of fun with plenty to do for the kids. Maddie had a ball with the farm animals and Melbourne turned on a 28′C day for the occasion.
Friday 6th September 2002
Maddie has not walked on her own for the last few days and when she is walking holding our hand is very unstable. She is otherwise as normal eating lots and very happy. Nonetheless we are concerned. We’ll certainly be keeping a close eye of her progress over the next week or so.
Wednesday 28th August 2002
We feel vindicated with the decision we made last week. Maddie has had a terrific seven days culminating in her getting to her feet yesterday and walking unaided. There’s no stopping her now – she’s been walking all around the house and the garden today.
Monday 26th August 2002
Maddie & Georgia visited childcare today to see all the kids. Maddie and Campbell (did I hear boyfriend !) had a ball together as usual. Lots of photos which are now in the Gallery 2.
Thursday 22nd August 2002
We’ve made the decision not to proceed with 5th stage chemo. The risks associated with the drugs used in this course are too great and with no defined benefit to Maddie we’re not prepared to make her sick again whilst she’s doing so well.
We know too well we have to live with what might have been if and when the tumour comes back. But we also owe it to Maddie to keep her on the right track now and to have quality time as a family – something which has been non existent in the last 6 months and has proven to be the most important thing in our lives at present.
Neither of us could live with Maddie dying from the chemo. At the moment it’s a risk which we consider unnecessary and one we’re not willing to take.
Thursday 15th August 2002
We took Maddie into hospital this morning for a review with our Neurosurgeon and then Oncologist. The MRI report confirms what they have said so far in there is no visible tumour. That’s not to say there aren’t still tumour cells in the brain (only visible by microscope).
We discussed the impact of 5th stage chemo on Maddie and whether it is actually necessary given Maddie is doing so well. Ultimately the decision is up to us and we’re going to spend some time over the next few days looking at the pros and cons of proceeding and not proceeding with the treatment.
There are some very nasty side effects and possible complications arising from the drugs they would use during this stage including a 5-10% chance of death. The biggest factor influencing our decision is the lack of data from similar/previous cases because it is so rare in someone of Maddie’s age. There is no conclusive evidence to say the treatment will be of benefit or not – or that it could prevent the tumour reoccurring later on. In fact the likelihood of the tumour reoccurring is probably still greater than not reoccurring.
I guess we have to make our decision based on what we know right now and how Maddie is doing clinically right now, rather than what could or might happen in the future.
The decision would be much easier to make if this thing was in my own head rather than in our child’s.
Saturday 10th August 2002
Great news for us all today. Maddie had her MRI scan this morning and there is no sign of tumour. We’re allowing ourselves some time to reflect and celebrate before looking towards the fifth and final stage of chemo shortly.
Maddie has shown tremendous fight and courage all the way along and we’ve now convinced ourselves that she can beat this horrible monster altogether.
Tuesday 6th August 2002
We’re starting to get very stressed about the MRI on Saturday. It seems like Maddie’s whole future depends on what the scan shows. That sounds pretty dramatic but we can’t help feeling it’s not far off the truth. I’m sure this is a natural reaction to every scan. The feeling is little overwhelming to be honest.
The fact that Maddie has been doing so well during her treatment is fantastic but not necessarily indicative of what could lie ahead.
Thursday 1st August 2002
Maddie got to be a tv star of sorts this morning. All the kids in our room appeared on “Going Nuts with Macadamia” which is a weekly show produced in the hospitals own studio. Maddie wasn’t too keen to sit on the couch with the other kids so she screamed until let on the floor with some crayons.
Maddie’s cell counts have come up a little bit and the doctor let us go home this evening. If her temperature gets high over the next few days we’ll have to head back in again for another stay. Hopefully that won’t happen and our attention can turn to the MRI on 10th August.
Wednesday 31st July 2002
Maddie had her blood transfusion overnight last night and is continuing with fluids and antibiotics today. Her counts are still low but the temperature seems to have subsided. We may be allowed to go home tomorrow afternoon if all goes well.
Tuesday 30th July 2002
We took Maddie into hospital this morning for her transfusions. She has developed a fever and has been admitted again. It’s likely she’ll be in between 4 and 7 days depending on how soon her cell counts come back to a reasonable level. Just when we thought she’d got over this lot of chemo and we were looking forward to a couple of uninterrupted weeks at home. Such is the unpredictable nature of this illness.
Maddie did have something good happen today though – a visit from AFL footballers Nathan Buckley (see the photo gallery) and Aaron Hamill. They’d come in to see the kids in the cancer ward and brighten their day.
Monday 29th July 2002
Maddie has been looking very pale over the last couple of days. Mel came out and did her blood tests today and the hospital called later on with the results. Maddie’s cell counts are still very low and we have to take her in tomorrow for some blood and some platelets.
Thursday 25th July 2002
We took Maddie in to hospital for some Vincristine, blood tests and Oncology review today. Her white cell count is zero and she is neutropenic. We have to keep an eye on her temperature over the next few days. If it becomes too high then she’ll be admitted for a few days.
Maddie is continuing to eat and drink well so the nasogastric tube is history hopefully.
Tuesday 23rd July 2002
Maddie had a big vomit this morning and her nasogastric tube is out again. We called the hospital and because she is eating reasonably we have decided not to put it back in just yet. That means she has to take her medicines orally. So far she seems quite happy to do so.
There is also a risk of internal bleeding by putting the tube back down Maddie’s throat whilst her platelet count is low.
Monday 22nd July 2002
Back to hospital this morning for most of the day. Maddie had some stem cells returned through her port. This will help replenish her immune system to a reasonable level. The unfortunate side effect from this procedure is the fishy smell that is excreted through Maddie’s pores and her breath. This usually lasts 24 to 48 hours. It takes some getting used to as Maddie smells like she’s been working at the fish market !
She also had another insulflon put into her thigh for us to give daily injections of GSCF into over the next 10 or so days. We get a day off tomorrow then back for more Vincristine on Wednesday.
Saturday 20th July 2002
The chemo finished early this morning. That’s stage 4 over with. The next few days we’ll have to keep a close eye on Maddie. It’s likely that she’ll become neutropenic given the large dose of drugs she’s had in the last four days.
Friday 19th July 2002
Aunty Caroline came to stay with Maddie last night. She was ok most of the night but did have a few vomits. Nothing do dramatic though as she is not eating anything at all.
Daddy’s turn to stay overnight tonight. Maddie had lots of fun watching Hi5 and listening through Sony headphones. A real little trendy baby !
Thursday 18th July 2002
Maddie had another good day today. She hasn’t had any vomiting from the drugs and is as active as ever. Hopefully the next couple of days will be the same again.
Wednesday 17th July 2002
We called the hospital this morning and there was a bed available for Maddie straight away so we headed in shortly after. Maddie started some fluids mid morning and then the chemo after lunch. She takes it all in her stride so easily. Looking at her laughing and playing in her bed you wouldn’t even know she was sick. Truly remarkable – I can’t think of any other description for it.
Monday 15th July 2002
We took Maddie in for chemo today and there weren’t any beds available straight away. Five hours later we were finally told a bed would be available in another 3 hours. By this stage we well and truly had had enough. Maddie was very irritable and hadn’t had any food, medication or sleep. We voiced our frustrations in no uncertain terms and went home.
Later tonight the hospital called and said to ring on Wednesday to see if there are beds available then. We’ve made up our minds we won’t put up with this again. In future we will ring before dragging Maddie into the hospital unnecessarily.
We certainly have enough to deal with in Maddie’s illness. The extra strain of waiting endless hours is too much to bear at the best of times.
The simple fact is the public health system is bursting at the seams and governments of all persuasions just don’t give health the financial support it deserves and needs.
Sunday 14th July 2002
We’re getting prepared to take Maddie back to the hospital tomorrow for her 4th stage chemo. Another journey will begin not quite knowing where it will end. If all goes to plan then Maddie will be home by Thursday.
Wednesday 10th July 2002
We took Maddie to hospital this afternoon for her Oncology review with Dr Ashley. Pretty much a routine appointment to ensure everything is ok for stage 4 chemo starting next Monday. Maddie then went upstairs for an echo cardiogram which was all done in ½ an hour. We head back early Monday for another 4 day stay.
Monday 8th July 2002
Mummy is sick in bed today so Daddy gets to look after Maddie for most of the day. She is eating quite well and drinking milk from a bottle. Still the favorite activity is watching Hi5 whenever the tv is on.
A new photo gallery has been added today as the first one is getting too large to load on a single page.
Saturday 6th July 2002
We had a first tonight for quite some time. Maddie ate some dinner. Her appetite seems to be slowly coming back over the last couple of days. She is still happy most of the time and is walking more and more with her trolley.
Thursday 4th July 2002
Maddie’s been walking today hanging on to her toy blocks trolley. She is really determined to get back on her feet again. She’s also repeating everything we say like a parrot – so we must be careful not to say any bad things about anyone !
We’ve had quite a few emails from people around the world in the last few days. It’s nice to know there are other people out there willing Maddie on.
Tuesday 2nd July 2002
We took Maddie into the hospital this morning to have her Vincristine push. She was fairly irritable and didn’t like waiting knowing something was going on. Her hair is really starting to fall out now and will probably be all gone by the weekend.
Over the last few days we seem to be having real difficulties dealing with everything. Some days you just don’t want to accept this horrible thing is happening to us.
Sunday 30th June 2002
Maddie went down to ICU this morning to have another stem cell harvest. It didn’t go too well initially. The catheter in Maddie’s leg was not working properly and most likely had kinked during the night. The doctor ended up having to replace it after pulling and prodding around for what seemed an eternity. Maddie was very distressed and visibly appeared in pain for some time.
The harvest finished around 2.00pm and we went back up to the ward to wait again for the lab results. We got the results a few hours later and by early evening had hit the road home.
It’s been another thoroughly exhausting weekend and we now look forward to a trouble free fortnight before 4th stage chemo commences.
Saturday 29th June 2002
We arrive back at the hospital at 7.15am this morning prepared for another long day. We get taken up to 6 East at around 8.30 and Maddie has her port accessed. It’s not until midday that we get the call from ICU to go down and commence. Maddie has a catheter inserted into her left leg and is then hooked up to a big machine which draws out her blood and extracts the stem cells from it. We are looking for 20 million stem cells to be collected today before we can think about going home.
Four and a bit hours later and the collection is complete. The blood gets taken off to the lab and we have to wait at least another couple of hours to get the results. So it’s back on the trolley and up to 6 East again and more waiting.
The lab calls through at 7.50pm. They only managed to get 12.5 millions cells so we have to go through the whole process again tomorrow morning. Maddie will stay in overnight. We have managed to settle her down and come home for some much needed rest before another early start again.
Friday 28th June 2002
We’re getting increasingly frustrated this morning. Maddie’s blood counts are still too low to do the harvest today, so it’s another wait until at least tomorrow. We ask the doctors if we can go home tonight and bring back Maddie in the morning. They are a little reluctant at first but later agree after they’ve made all the necessary arrangements for tomorrow.
We head off this afternoon as a family again for the first time this week. Even it is only for one night the feeling is great.
Wednesday 26th June 2002
Maddie’s cell counts are still low, so we’re not going home anytime soon. She will also need a blood transfusion today to help things along a bit. Her cough is still ordinary. The doctors have told us she has the RSV (respiratory) virus which is quite common in babies but not usually at Maddie’s age.
She is not eating at all and requires her bolus feeds to be increased from 3 to 4 a day in order to maintain her weight. It’s a fine line between giving her what she needs and putting in too much, which will in turn come right back up again.
Monday 24th June 2002
Another long day in hospital. We managed to get home this morning at around 2am for a few hours sleep before heading back in. Maddie’s counts are lower today than yesterday and she has a shocking cough. The doctors finally came around this afternoon and, although Maddie has presented neutropenic a little sooner than thought, she is pretty much in the condition they expect. It’s frustrating seeing her relatively well but having to rely on a whole pile of numbers before we’re any chance of going home.
At this stage we’re still likely to be here through to the stem cell harvest on Friday and home on the weekend if all goes well.
Sunday 23rd June 2002
Maddie has developed a nasty cough and her temperature is a little higher than usual. Looks like she has picked up a cold from someone. We monitored her temperature until it got to 38.6 then called the hospital to say we were on our way in.
The doctor thought that Maddie just had a cold until we got her blood test results. Maddie’s cell counts are very low – she’s neutropenic for the first time and has to be admitted for antibiotics. At this stage it looks as though she’ll be in all week until the counts come back up again.
Friday 21st June 2002
Maddie had a good day today playing at home in familiar surroundings. Though she did have a big vomit tonight all over Daddy. The nasogastric tube is out again so we’ve arranged a visit tomorrow from Maddie’s favorite nurse Mel to come and put it back in again.
It’s still very much one day at a time. We try to get away from that fact but keep coming back to it.
Thursday 20th June 2002
Aunty Caroline stayed with Maddie last night and went ok apart from a little vomit early in the evening. Today the chemo finished and we were busy organizing things before going home.
Maddie had a small infuser port put in her thigh this morning into which we give her an injection each day for the next week. This is to get her blood ready for the stem cell harvest which is likely to be next Friday. That will be a trip to ICU to have that done.
Prior to that it’s back to the hospital on Monday for some more Vincristine, Wednesday for blood tests and Thursday for Oncology review. There doesn’t seem to be much time in between. Looking after a seriously ill child is a full time job in itself and unless you’re organized reasonably well, all the appointments etc can get very overwhelming. Georgia does a terrific job with all this stuff.
Wednesday 19th June 2002
Wouldn’t you know it – Dad’s always get the easy bit. Maddie was a dream last night. She fell asleep in my arms at around 8pm and slept all night. Didn’t hear a peep – even the helicopters didn’t wake her up – and no more vomits.
She was getting a bit ratty this afternoon and kept saying she wanted to go home. The treatment will finish late tomorrow afternoon and Maddie should get her wish by then.
We had a good chat with our coordinator this afternoon. She elaborated a little more on the MRI scan and said it was unclear whether the tumor has progressed or not. There is still a lot of swelling and bleeding evident from surgery and this can have the same appearance on the scans as the tumor itself.
Tuesday 18th June 2002
Georgia has a rough night with Maddie last night. She vomited a couple of times during the night culminating in a trip to the treatment room at 10pm to have the nasogastric tube put back in again.
Another huge vomit at 2am, in between helicopter landings outside, made for a long and tiring night. It didn’t seem to affect Maddie today though. She is not interested in eating anything and has been fed down her tube and has been tolerating them ok – no more vomits today.
It’s Dad’s turn to stay tonight so we’ll see if that’s as eventful as last night.
Monday 17th June 2002
Maddie was admitted to hospital this morning for 3rd stage chemo. Ward 6 East is our home this time (haemotology/oncology ward). It seems a little strange after being so used to 6 West on our last visit. Already though we have noticed the difference in the people around us. I think parents and visitors are a little more considerate knowing that all the kids in the ward are fighting cancer.
Chemo started this afternoon around 2.30pm. The main ingredient Vincristine runs at 2ml an hour for 72 hours. Maddie happily played with Play Doh on her bed most of the day. We were worried how we would entertain her and keep her still for 4 days, but so far she’s doing it easily. Will be interesting to see if she maintains that as the drugs kick in. At some point I’m sure she will feel lousy and be content to rest.
We’ll take it in turns to stay with Maddie overnight during this stay and keep the vomit bucket nearby.
Thursday 13th June 2002
We took Maddie in for her appointment this morning and discussed the third stage treatment plan and the MRI results. There have been some changes since the last MRI scan but they are unable to determine if these are because of post operative reasons or the tumor. The general feeling is the scan is a good result and they are happy with Maddie’s progress.
The decision was made to admit Maddie on Monday for 3rd stage chemo. It will be a 3 to 4 day stay followed by the stem cell harvest 15 to 20 days later. At least that gives us the weekend to prepare properly.
Wednesday 12th June 2002
Another unexpected development today. Oncology called and want to see us tomorrow to discuss the treatment and the MRI results. They advised to be prepared in case Maddie is admitted tomorrow instead of next Monday.
All sorts of things have been going through our minds all day. We were just getting ourselves mentally prepared for Monday so it’s come as a bit of a shock that we’re back tomorrow.
I guess we're learning to expect the unexpected.
Monday 10th June 2002
We had a call tonight from the hospital. The tumor looks much the same as the last MRI. It hasn’t grown any bigger but it also hasn’t got any smaller. It’s difficult to know how to take that news. We are pleased that the tumor hasn’t grown but we are equally at unease thinking that the chemotherapy has had little effect so far. They should have a full report on the MRI within a day or two so perhaps we will know more by then.
Maddie hasn’t been herself today. She was quite subdued this morning and went that way again tonight. We learned out why just before dinner. Another huge vomit and the nasogastric tube is out again. We’ll leave it out tonight and try and put it back in in the morning.
The feeling of not knowing what is going on is overwhelming. The fact that we’ve had the call we’ve been waiting on hasn’t given us any reassurance, just more uncertainty.
Saturday 8th June 2002
Today is a big day for us all. We took Maddie to the hospital this morning for her MRI at 8.30am. She took the gas in her stride as usual and it was all over in about 40 minutes.
We are now waiting for the call from the doctor with the results. It might not be today so we are in for a long weekend.
Tuesday 4th June 2002
Maddie had a huge vomit this morning and a trip to the hospital was required to put a new nasogastric tube in. It took an hour or so before the nurse could get anything worthwhile back through the tube and it looked like we’d need an x-ray to determine if the tube was in the right place. Daddy to the rescue as he managed to get some stomach acids just in time.
We’ll probably stick in back in ourselves next time now we know how to do it properly. It’s just the number of people needed to hold Maddie down that’s the problem.
Monday 3rd June 2002
A terrific day for Maddie today. She is crawling all over the house and we are confident she will be up and walking very soon. And a surprise arrived in the mail this afternoon – an autographed poster from Hi-5
Saturday 1st June 2002
Physio came to visit Maddie today. They are very happy with her progress. Maddie is even managing to crawl three or four paces at a time. Another blood test this afternoon as well. We haven’t heard the results, so presume everything’s ok.
The MRI scan next weekend is starting to play on our minds. It will probably be a defining in moment for the future outcome.
Tuesday 28th May 2002
We had bit of a scare this morning. Maddie vomited for the first time since leaving home. It was panic stations for a little while, and after a few frantic calls to the hospital, we kept an eye on her for the rest of the afternoon.
Also has some blood test results. Maddie’s potassium levels are high. They will be monitored closely over the next few days to ensure everything is ok.
Monday 27th May 2002
Maddie had a visit from Sophie, Laura and Shelley tonight. They are three of Maddie’s carers from her child care centre. One day, we all hope Maddie will be well enough to go back there and play with all her friends.
Saturday 25th May 2002
Maddie is having fun playing around on the floor eating lots of Cheezels today.
Thursday 23rd May 2002
Maddie's first visit back to the hospital today since being discharged a few days ago. She had an appointment with her Oncologist and Neurosurgeon. They were both happy with her progress. She also had a CT scan this afternoon which slowed slight improvement in the sub dural fluid on her brain.
The third stage of chemotherapy is due on 17th June. This will be a 3 to 4 day stay in hospital as they will also need to harvest Maddie's stem cells for transplant later on in the treatment.
We also have an MRI scan to deal with on 8th June. We will get an indication from this scan if the chemotherapy has had any effect on the remaining tumor.
Monday 20th May 2002
The doctors do there rounds this morning and there’s some discussion as to whether Maddie can go home or go upstairs to Parent Accommodation where Georgia and I are staying. We are disappointed as all the plans have been made towards going home. We wait a couple of hours then get the ok that we can all go home.
I’m rushing around packing up things and filling up the car like there’s a huge hurry to leave. The truth is by the time 12 o’clock came around and we were ready to go it was a very emotional time. Maddie looked delightful in her Hi5 beanie and was raring to go. Mum and Dad were struggling to hold back the tears as we left the safety and comfort of Ward 6 West to make the 30 minute journey home.
After 7 and a bit weeks of ups and downs we go home knowing the long fight is still there to be fought. The 8 operations that Maddie has endured will give her some time for the treatment to work. It is still very much a 50/50 proposition.
We’ll miss the new friends we have made at RCH but I guess we’ll see them soon enough. The entire staff have been tremendously supportive of Maddie and us. Their dedication and commitment is truly remarkable and really could not be believed unless you saw it first hand.
Saturday 18th May 2002
Chemo finishes at 6.00pm tonight and we take the opportunity to get Maddie out of bed for dinner and to have some cuddles. We are really starting to believe we could get out of here on Monday.
Friday 17th May 2002
Today is 2nd stage chemo day. Maddie has come through last nights surgery well and is talking lots and eating quite well. She has a CT scan this morning to check the fluid situation. We need the all clear from the neuros before chemo can begin. Purely because of all the fluid that Maddie gets pumped into to her before and after chemo.
Chemo begins at 4.00pm and is the same as the first stage. Two hours of fluid followed by 6 hours of Cisplatin and 18 hours rehydration. Maddie handles it like a breeze. The biggest concern for her is there’s tubes hooked up to her port and she can’t get out of bed for 24 hours.
For the first time the doctors and nursing staff talk about going home. The plans are to leave hospital on Monday if Maddie can get through the weekend without any complications.
Thursday 16th May 2002
Again Maddie is on the emergency surgery list and we seem to wait all day again for anything to happen. The surgery is performed by a general surgeon this time and the port is inserted in Maddie’s chest to the right of her right nipple. A tube connects this to an artery in her neck. Another couple of war wounds to talk about in the future.
Maddie looked a bit ordinary in Recovery this time around and when we were ready to take her back up to the ward responded by vomiting over Daddy’s new jumper. She doesn’t normally react to the anesthetics but this time did in the most obvious manner.
Tuesday 14th May 2002
Second stage chemotherapy was planned for Friday and Maddie needed to have a port placed in her chest for this and future chemo. This was a standard part of treatment which we had known about for sometime but nonetheless required an 8th trip to the theatre. We were beginning to feel like we could do the operation ourselves given we’d been down to theatre so many times before.
The port makes for easy access to Maddie’s veins and stops having to put an IV in for each stage of chemo. Maddie’s veins by this time are extremely difficult to access anyhow because they are so small and have been used so many times.
Monday 13th May 2002
This morning added to the rollercoaster ride that we have experience so far. After a CT scan today it the neurosurgeons told us the subdural shunt was in the wrong place and would need to be revised. The end of the tube was pointing into the brain itself and could cause permanent damage if not corrected.
Maddie was booked to go into theatre at 4.00pm but as can happen (and normally does) with the emergency list it was midnight before the surgery began. Wirginia had gone to a conference for three days so surgery was performed by a another neurosurgeon who cam down from the Royal Melbourne Hospital. Again it was successful. By the time Maddie got out of recovery and back up to the ward it was 2.00am. Another entirely exhausting day was had by Maddie and her parents !
Sunday 12th May 2002
Today it’s time to have the subdural shunt placed into Maddie’s head. She is booked onto the emergency surgery list which basically means you wait all day or so it seems. Maddie finally went in to surgery at 7.30pm and after an hour or so was out in Recovery. The subdural shunt is a tube running from outside the brain into her tummy and it drains away the fluid.
Friday 10th May 2002
Maddie continues to do well and today managed a big milestone. We took her with Rachel, Speech Therapist, down to McDonalds for some ice cream. Maddie really enjoyed the ride in her stroller and certainly enjoyed the ice cream. Her eating is going quite well in the last few days as long as the food is all mushed up. She still won’t drink any fluids though. Is not the slightest bit interested in her cordial or apple juice.
She had another CT scan and this time the collection of subdural fluid on the outside of the brain is a concern. The fluid is draining from the inside of the brain ok after the VP shunt was clipped but it now looks likely Maddie will need a subdural shunt as well. Terrific another trip to theatre is on the agenda.
Monday 6th May 2002
Maddie has another CT scan today which shows the shunt is working too well. The ventricles in her brain are too small. Now that the tumor has been debulked the natural drainage should work quite well so the decision is made to clip off the VP shunt.
A trip to theatre for the 5th time is necessary. No matter how minor this procedure is we are still very apprehensive everytime Maddie goes anywhere near the operating theatre. Again it goes well and Maddie adds another wound to her ever growing collection. This time a small incision on the back of her neck.
Wednesday 1st May 2002
The hospital clowns came around today and Maddie was not amused. She didn’t like them at all. Mummy taught her to poke her tongue out today. Maddie thinks this is a huge joke and does it to everybody that walks into the room.
Tuesday 30th April 2002
Maddie recommenced her 21 day oral chemo today. She needed the all clear from the neuros before that could happen.
Monday 29th April 2002
Maddie continues to improve after her marathon surgery. She has her bandages removed and goes back to the ward this afternoon. Again we end up in our own room as Maddie is still classified as a chicken pox contact. This would actually be a blessing in disguise over the next few weeks as we were able to stay in the ISO room and maintain some sanity away from everyone else.
Friday 26th April 2002
Today was the most physically and mentally draining day we could ever expect to have in ours or Maddie’s entire lifetime. The surgery Maddie was about to face was designed to save her life in the short term but would have no real bearing on the final outcome down the track. That was the hardest part to accept. As parents we were faced with the decision to put Maddie through hell and were we prepared to do that if she wasn’t going to make it anyway ? It truly is every parent’s nightmare.
Maddie was taken from ICU at 8.00am to have an MRI before surgery. She went into theatre at 8.30am and the long wait would begin. A couple of hours passed by and the strain was really starting to show. At around 10.30am I went to the bathroom and collapsed. I managed to call Georgia on my mobile to get some assistance. A “code blue” was announced and doctors came running from everywhere. They took me off to emergency and gave me some fluids and anti nausea medicine for a couple of hours. By mid afternoon I headed back to the cafeteria with the rest of our family. We still had not heard any news from theatre. The longer it went on the more optimistic we became.
Finally got some news at 4.00pm that the surgery was going well and that they would be a few more hours. That few hours became 3 then 4 then 5 and so on. We got the call that surgery was completed at 10.30pm – some 15 hours after it had commenced.
Wirginia and Helen called us into the waiting room outside theatre and said they had managed to remove between 95 and 98% of the tumor. This was fantastic news and not what we really expected to hear. Maddie has remained stable throughout the surgery and they were ecstatic with the result.
We got to go into ICU about 45 minutes later and Maddie was waking already looking up at Mummy and Daddy. Truly a miracle had been performed tonight and we allowed ourselves some time to feel very, very lucky indeed.
Tuesday 23rd April 2002
Maddie’s condition hasn’t improved any. She doesn’t know we are by her bedside. The doctors make the decision to do another MRI scan. The news is not good. The tumor has progressed, but not into the empty space left by the initial surgery, the other way down onto the brain stem. The brain stem controls all the vital elements of life such as heart rate, breathing etc. This was very bad news. Wirginia discussed the options with us. She thought the only chance was to operate again and try and remove as much of the tumor as possible. It would be a long and very difficult operation and not without significant risks. Their was a 1 in 10 chance that Maddie would die during the operation however to do nothing would see her die possibly by the weekend. The operation was planned for Friday 26th March as their was a lot of planning required beforehand and Wirginia wanted her best team around her before attempting such a complicated surgery.
It was time to draw on all the powers of strength and prayer that we could all muster. There was still a fair chance Maddie might not make it until Friday. Our overall feeling was quite pessimistic. The difference between what we hoped would be the outcome and what we thought was significantly different.
Sunday 21st April 2002
Once again Maddie’s conscious state proves to be volatile. Her condition has deteriorated again today so much so that Maddie is again moved back to ICU at 7.30pm. To add to the complications she has come into contact with a child from the ward last week who has since come down with chicken pox. Maddie is isolated in her own room in ICU as a precaution and is given a chicken pox vaccine in her thighs.
Saturday 20th April 2002
Maddie remained in ICU until 1.30 this afternoon when she again went back to Ward 6 West. Just briefly the shunt appears to be doing it’s job as Maddie was able to sit in a stroller and go for a ride around the ward today. We seemed to be making some progress at last.
Friday 19th April 2002
The CT scan showed the fluid building up in the left ventricles and it was most probably caused by a blockage of the shunt. Maddie again goes into surgery to have the shunt revised. It turns out the top portion of the shunt was blocked and needed to be replaced. We are feeling very vulnerable today. Most kids have a shunt for months or years without any problem at all and now Maddie needed another trip to theatre after having the shunt for only a week.
Thursday 18th April 2002
They move Maddie back out of ICU to the ward at 7.00 pm tonight. We’re not entirely happy as Maddie still only seems to be semi conscious. We headed home to try and get some sleep as Maddie was sleeping well and didn’t know if we were there or not.
The telephone rings at 10.30pm and it’s the doctor to tell us they cannot wake Maddie up to do her observations. They decide to send in down for another CT scan to see what the fluid is doing. Maddie moved back to ICU at 3.00am in the morning.
Wednesday 17th April 2002
Maddie’s conscious state is changing all the while today. She seems to be very drowsy and at times incapable of waking up from sleep. The 18 hours of fluid is interrupted to send her back to ICU as a precaution and place her on the ventilator to protect her airways.
Tuesday 16th April 2002
Maddie has been doing very well over the last few days and is quite aware of us and what’s going on around her. Today she is due to have the first stage of chemotherapy. Three hours of fluids followed by six hours of Cisplatin and then another 18 hours of fluids to push the chemo through her system. The first sight of the chemo is daunting but also a little anti climatic as it’s in a little black bag no bigger than a packet of potato chips.
Friday 12th April 2002
We both feel pretty ordinary today. It’s Maddie’s 2nd birthday and our 4th wedding anniversary and she’s being prepared for her second lot of surgery. A great way to spend your birthday. The feeling of guilt for parents in this position is extraordinary. We are very concerned given that Maddie’s heart stopped during the first procedure. The operation goes well and lasts for a couple of hours. Maddie is now free of the external drain and hopefully will be able to get around a little easier.
Thursday 11th April 2002
Maddie is eating Cheezels today. The healthy diet really goes out the window at a time like this. We’re pretty much of the opinion Maddie can eat whatever she’ll keep down. Sure enough we get the news that they plan to operate and insert the shunt tomorrow – Maddie’s birthday.
Tuesday 9th April 2002
Maddie sits up on Georgia’s lap today for the first time. She doesn’t like it and only stays up for about 10 minutes. The neurosurgeons are still concerned at the amount of fluid that is draining and are planning to put a shunt inside her head. This is basically a tube from the ventricles in her brain to her tummy which will release the fluid. There is a lot less risk of infection than maintaining the external drain. We keep reminding everybody that Friday 12th is Maddie’s birthday and if possible can we avoid having surgery on that day.
Tuesday 2nd April 2002
Out of ICU and up to Ward 6 West today. Maddie can’t really do anything or sit up too much. She has an external drain coming out of the top of her head which is draining the fluid from the brain.
We met David Ashley today who will be in charge of Maddie’s chemotherapy protocol. We sat down and met with him and discussed what would happen over the next few months. At this stage the lab tests conducted on the tumor tissue removed from Maddie indicated the worst possible tumor type. The tumor had been diagnosed as a Glioblastoma Multiforme (GBM) grade four malignant tumor. This effectively gives Maddie a 50/50 chance of survival. It is a particularly aggressive type of tumor and would need to be targeted with an equally aggressive form of chemotherapy. Radiation has been ruled out of the equation as Maddie is too young. Her brain is not yet developed enough to perform radiation treatment without significant brain damage. David did not pull any punches. A GBM in an adult is a death sentence. The fact that Maddie is two years old is the biggest thing in her favour right now. As incredible as that sounds her body is far more capable of dealing with the tumor and has a much greater chance of responding to the treatment than even a 5 year old.
There is also another possibility in that the tumor is showing some characteristics of what’s called a Rhabdoid tumor. The mortality rate from these tumor types is 99%. It would require four weeks of lab tests to determine if this was to be Maddie’s fate. We can only equate this feeling to that of someone sitting on death row waiting for the execution. Having this fear hanging over us would prove the biggest hurdle in the next few weeks.
Monday 1st April 2002
Another long day in ICU. Maddie is waking up today. She seems to recognize us and is able to slightly squeeze our fingers. They take her off the ventilator this afternoon as Maddie is breathing ok and even has her dummy back in the mouth.
Sunday 31st March 2002
Today is Easter Sunday. The irony of resurrection has not been lost on us today. Maddie came back from the dead last night.
We sit in ICU today coming to terms with the last 24 hours. Maddie’s head is bandaged all around and looks very swollen. She lying on an ice blanket to keep her body temperature down and stop her waking up too quickly. All designed to reduce increasing the pressure in her brain too much.
Saturday 30th March 2002
Today would be the day that would change our lives forever.
Maddie had some breakfast this morning and vomited twice in quick succession soon afterwards. We packed up some things and headed back to hospital. They took some details in the Emergency Department and advised there would be a wait of about four hours as they were very busy. I explained that Maddie had been admitted the previous weekend and that her condition had deteriorated since. We ended up waiting for about 10 minutes. Looking back I think even then the doctors realized the seriousness of the situation.
We saw a lovely doctor who noticed immediately that there was a problem with Maddie’s right hand side. He asked how long she had been vomiting for and if it was always in the morning. Maddie also seemed distressed when sitting up and much less so when lying down. He said he would call the neurologists to come check Maddie so they could rule out anything going on in her head. He really should have said to rule it in – as I’m sure that’s what he was thinking.
Sometime later Professor Inder from the Neurology Department came down and had a chat with us. All the signs were pointing to a brain tumor she said. They would need to do an MRI to confirm their fears. We were absolutely stunned. This couldn’t be happening to our little girl. We thought that she had a bad case of gastro and maybe some Bell’s Palsy. The idea of a brain tumor was completely foreign to us and only something that happens to other people.
A couple of hours later the MRI had been done and Professor Inder came back to give us the news. It was a brain tumor and a very large one at that. About half the size of Maddie’s left hand side of her head. Words failed us. Tears seemed the only response we could come up with at that stage. She said that Maddie would need emergency surgery tonight otherwise the chances of making it through the weekend would be very slim.