@jamieoliver if you are in Belgium you should pop over to Tubingen and rustle up some food for all the families here in the elternhaus!
Sometimes when faced with situations so far removed from day to day life such as our current context, the only thing to do is to detach yourself through quiet distraction.
That quiet distraction has been needed for some weeks....not a meltdown moment of tears and feeling utter rubbish afterwards but thinking and reflective time. At the same time ever mindful that negative thinking and "Why"questions also have no place in my life at the moment. Such detachment has been easy today and I don't know why.
How long I had been sat there staring, I have no idea but the sight was almost as beautiful (but not quite!) as my Jamie! Even being on a ventilator does not take away just how precious Jamie is!
As I watched the heavy snow falling it led me to thinking how can something so delicate and light looking actually be so heavy? Indeed Jamie, how can you look so delicate and vulnerable yet be so strong? Time at the window stood still as I tried to observe individual flakes and follow their descent to their final resting place. Difficult as the flakes whirl and twirl all around, in all directions but always find their way to join together changing the landscape all around. The last 3 years with Neuroblastoma have been like this. Eventually, the feeling of spiralling out of control when Jamie's therapy goes in a different direction, goes away and comes to rest. That rest being a recovery point. Recovery and gaining strength for him to deal with whatever happens next.
It wasn't long before the hills of Tubingen disappeared in the thick snow storm but they will be back. The clouds and storms lift quickly here and as soon as they do, the hills re-emerge. It is just so beautiful here that I can't quite capture it with words. The longer I sat, the more beautiful the view. Everything being protected by the delicate snow. Rather than seeing the trees as statues, I imagined them as being protected and preserved.
I had absolute complete peace and solitude, there was nobody to interrupt my thoughts and there was no noise at all. This inner calm is only because Jamie has remained stable over the past 48 hours. Although we don't have the real Jamie at the moment this will pass and Jamie will continue to fight whatever is thrown at him!
For now Jamie needs complete rest and I am so pleased that he is comfortable. It has been a long 3-4 weeks since we started all of our problems after the antibody and now we all need to take stock and recharge, ready for the next part!
Although Jamie can't see the snow, I have told him that he will see it again and throw those snowballs at me!
Once we had completed the round of antibody we began dealing with what we thought were side effects from antibody and withdrawal symptoms from morphine. This manifested with Jamie having 2 seizures. MRI performed on the brain and spinal tap of which results were...HHV6 virus and some encaphalitis. At first we were confident...great to find out what was causing the problems because surely that meant therapy could be specific? A sigh of relief also that no brain tumour was detected. We were moved back to our stem cell unit and began researching the virus and medications. What we were presented with did not make for bedtime reading. Even the antiviral drug was going to be toxic with more than likely damage to an already ill performing solitary kidney. Worrying stuff. Even more worrying were the anti seizure drugs. I was really concerned with the effect of staying on these for a period of time but was assured that for Jamie's safety, he needed to remain on these drugs. We so needed the antivirals to work. We knew the importance of everything and at the moment our worst fears at the beginning of this episode are sadly coming true.
The weekend in the stem cell unit started well. The treatment began for Jamie's new complications and on the Saturday he was happy, a bit tired from his seizures on the Thursday and also started eating again!! I stayed with him on the Saturday night and he was very agitated. It was as though his brain was switched on and could not rest. He started developing obsessive behaviour with a hot water bottle and as soon as it was cooled, was shouting for another one! Another sleepless night for me and Jamie and at one point he was screaming for sleepy medicine! To say I was worrying about his behaviour was an understatement. As experienced oncology parents, we felt completely out of our depth with brain issues. The research continued on Sunday morning and the more I was finding out, the more questions I had.
On that Sunday morning, Jamie was very tired. Odd behaviour continued but then he would have a proper conversation with me. As I sat next to him, chatting, I noticed that our conversation was disjointed. He was talking about our old dog Barney and our next door neighbours as though it was the here and now. He was surprised when I explained that was a few years ago. He looked out of the window and asked where Daddy was and that he loves him so much. His eyes started moving to the corners and his face twitched. I knew something was wrong and just went to press the buzzer for help when Jamie had a seizure right in front of me. The team came in, crash trolley, everything. I have never felt so scared or at least I thought I hadn't until the events over the past few days. He came round very quickly and asked his Drs not to be rough with him!! This whole episode really shook me up and at this point I truly wondered how we were going to cope. In hindsight I wish that was all I had to worry about.
The beginning of last week saw Jamie move back onto the oncology ward. The antiseizure drug was changed as it was causing too much agitation and aggression. As the week went on, Jamie's behaviour and condition changed dramatically. Something was not right with the brain...I knew that. He had tingling in his hands and fingers, pain in his arms, he was very confused, lethargic (which I think was his levels of consciousness changing) and it all manifested on Friday night through to Saturday.
The reference to the advent calendar was the final peg in the board for me that something serious was happening. At 5.00am Jamie was asking what the two 'things were on the wall?' Advent calendars for the children. I brought it over to him and explained what it was called. He had absolutely no idea what they were. In the space of 30 minutes, I had the same conversation with him 4 times. He asked the same questions and I gave the same answer. 4 bloody times. The nurse had called out our consultant who was at home.
During that time Jamie began asking why I was in the room. I explained that it was my turn to sleep here with him. He asked me where I had been sleeping and I showed him. Then he asked where Daddy was. I explained that he was at the Eltern Haus. Jamie said "What's the Eltern Haus?" How I didn't cry I don't know. Jamie seemed to have no recollection of some of the things in his life. He wanted to know how we came to the room and how long we had been here and why where we here? "This is not the Eltern Haus then? Is Daddy downstairs?" So I explained again that Daddy was at the Eltern Haus and Jamie was in hospital.
I can't actually write anymore because it is too painful at the moment....it has all ended up with Jamie fighting for his life on a life support machine with the Professor telling me that Jamie could be on the ventilator "For some weeks..." whilst he fights encaphilitis, pneumonia and the HHV6 virus. All of this fight with hardly any immunity and T cells.
This is going to be a tough time but Jamie 'when you smile, the whole world stops and stares for a while, because you're amazing, just the way you are.'
Jamie and Poppy's favourite song.
Vicky (a mummy to two incredible children)
The beginning of Advent will never be the same again for our family and I honestly don't think I can look at another Advent calendar with such happiness ever again.
Let me try and explain. Actually, I can't explain because there is absolutely no explanation for what I want to try and explain! Confused? Yes and more importantly so was Jamie.
Without going into too much detail the last few weeks have been difficult. The next phase of Jamie's treatment was due to start on 5th November, day plus 62 after HAPLO transplant. This was delayed due to an infection and so we began antibody on 15th November. As posted on the appeal page the antibody was difficult for Jamie mainly because of the side effects from morphine.
Have to go as Professor is here and don't want to lose what has already been written!!!