August 1st, 2016
We have just received a phone call that comes as a massive blow to us. The nuclear medicine department of Christies has just rung us to inform us that the radioactive isotope to be used for Jessica's treatment this Wednesday has today failed its quality control check!
This radioactive isotope is made in Germany and now has to be re-made but means we cannot go ahead with treatment this week! Instead now we have to reschedule for a later date. The nuclear department is all set to start the treatment next Wednesday, 10th August, but we are now at the mercy of room availability as to whether this date can be set in stone.
As you can imagine it is a huge crushing blow to us, counting down the days to then have the treatment delayed. We have been watching daily as Jessica develops more and more symptoms of tumour growth, watching her suffer with pain, seeing more and more lymph nodes appear swollen beneath her skin. Yet again though all we can do is wait, tomorrow we should find out if the room is available for use next week. As we find out we will update you all.
August 4th, 2016
Finally the news we have been waiting for...Jessica WILL be going to Christie's next Wednesday, 10th August!
At last we can make the relevant plans and hopefully get rid of this pain that Jessica is in. Just to give you some sort of idea of the pain that Jessica has developed this last three weeks, she started on 5ml (10mg) of slow release morphine twice daily and 1.75ml (3.5mg) of fast release morphine as and when needed. Now, three weeks later, Jessica is on 30ml (60mg) of slow release morphine twice daily and up to 9ml (18mg) of fast release morphine as and when required. These are huge amounts for Jessica and even then we are still sometimes short of addressing her pain. This treatment should alleviate some of this pain straight from the off more or less and for that reason alone I cannot wait to get started.
Time to once again start attacking this awful disease!!!
August 9th, 2016
One more sleep! In less than twenty-four hours we will be at Christies to start Jessica's treatment. The wait has been unbearable with one cancellation thrown in to prolong our wait further, finally though we can resume our fight against this disease and hopefully bring Jessica some comfort.
I am really not looking forward to this coming week in hospital, the minimal contact, the separation from her via lead screens and the isolation. I am however looking forward to what we hope the end result will ultimately be, a pain free Jessica.
Well Jessica has just been sick all over herself, her bed and the floor. Poor girl now has to lie there like that whilst special measures are put in place to clean up. Even her vomit is classed as radioactive waste and as such needs to be handled in the correct manner. Bed sheets will be removed and decontaminated, pyjamas will be disposed of and the floor cleaned in a quick turnaround to limit myself and the nursing teams exposure. Thankfully I can clean up Jessica myself whilst nurses tend to her bed, as long as I am gowned and gloved and of course carrying my obligatory Geiger counter.
I just want to give her a massive cuddle, wrap her in my arms and not let her go. Hearing her being sick and not being able to comfort her in anyway is heartbreaking. Thankfully we have been told that one episode of sickness can be expected four to six hours after the infusion and after this one episode, normally there are no further issues. Fingers crossed that this is the case.
August 11th, 2016
Click the pic for video link
This device shows how much radioactive contamination is on whatever is put near to the sensor. It differs from my personal counter in the way that my personal counter shows my overall exposure to a radioactive source and warns me when I am too close to the source. This device purely shows what level of contamination is present, for example on skin, clothing and shoes. The numbers you see at the beginning and the end of the video are the background radiation levels in the room and are perfectly normal. On presenting something to the sensor, on this occasion the skin on my wrist, the reading should not increase by more than ten units. If it raise more than ten units, which it was considerably more, I need to take immediate action to decontaminate or quarantine the affected area.
An example of this was the nurse last night cleaning Jessica's room after she was sick. Although he cleaned the floor thoroughly, by then standing in that area after the matter, he contaminated his shoes to the point that he needed to place them in quarantine and change in to a fresh pair. This is how potent this stuff is! The reading on my wrist is after administering medication to Jessica and even despite no direct bodily contact with her I have enough contamination to require decontamination of the area.
These procedures are now second nature to me but they are protocols I wish I did not have to know and I cannot wait to forget. I just want to get my little girl back home now!
The nuclear physicists have done a twenty-four hour radiation check and Jessica has so far lost just over half her radiation and so we are currently on course to come home on Monday if she carries on with those reduction levels.
I have myself in the first twenty-four hours reached the maximum safe level of radiation for a member of the public to be exposed to and so I have had to sign a consent form to allow me to further exposed to radiation. This now also means that when Jessica does come home I will have to take my geiger counter home for a week to monitor my exposure even once we are home.
Jessica is a lot more settled now, suffering from pain but we are managing that. We were told to expect things to get worse before they get better as the radiation can at first swell the tumours which will of course give her more pain. Hopefully though these swellings will not last too long and not cause her too much more discomfort.
August 12th, 2016
Click photo for link to The Lancashire Telegraph
Jessica has so far had a more settled day. We seem to have found and resolved what was causing her sickness and thankfully it is not treatment related.
Her pain does seem to have subsided somewhat this last twenty-four hours to the point where it is more often than not only two lymph nodes that are still giving her discomfort. The doctors and nurses both here and from RMCH have been amazing at tending to Jessica's needs.
We are looking at being discharged from The Christie on Monday but before we can go home we need to go to Royal Manchester Children's Hospital for a much needed blood transfusion. Her haemoglobin levels are below the minimum required level and this treatment will also affect them and worsen these already low levels.
Once we get to RMCH we will need to proceed directly to isolation to protect other children from her radiation and we will spend the day there before finally going home that evening. Both me and Jessica can not wait for this time at home and although we are still a long way from cuddles and some sense of normality, at least being home will bring comfort.
August 14th, 2016
There are some absolutely amazing doctors and nurses that work for the NHS. Whilst Jessica is at The Christie receiving this specialist therapy she needs a paediatric doctor to be here at all times to address any issues. Me and Jessica have just said goodbye to a doctor who has been here with us for thirty-six hours straight, her shift starting yesterday morning and only now just finishing! We have had other consultants including Jessica's oncologist coming in on their days off just to check in on us and make sure that Jessica is comfortable and doing well. I really do not know where we would be without the NHS sometimes.
Jessica has begun to show signs of movement, herself wanting to get out of bed and walk to the toilet, something that a week ago she would not have contemplated. She has lost a lot of muscle mass this last few weeks to the point that she does struggle to carry her own weight but with support she is pain free enough to attempt these movements. She is also a lot more talkative once again, something that I had really missed about her this last few weeks, hearing her giggling and belly laughing is an enormous relief and has given me something to smile about.
Her radiation levels are too high for us to come home yet and we are having to spend another night here at The Christie in isolation. The days are getting harder now, tonight will be night six and has meant little to no interaction with a human face for the majority of that time. Perhaps what is harder is Jessica's increasing frustration with the lack of contact, on several occasions watching her sob as I have to refuse her cuddles. Also with her new found movement comes her want to play and make things, something that I would normally do with her but again I have to refuse, leaving her to entertain herself.
One concern for us is Jessica's haemoglobin levels, at a level of sixty-two (transfusion level is eighty) which is causing her to be extremely lethargic and short of energy to do much at all. We are trying to arrange a transfusion for her but The Christie cannot do it as they do not have a licence to give blood to under sixteens. We are trying to arrange going to Royal Manchester Children's Hospital tomorrow or Wednesday but there is a lot of preparation involved as Jessica needs to be in isolation away from any other children for their safety.
Hopefully tomorrow we will get the all clear to leave here and get the go ahead for this much needed blood transfusion.
Jessica is classed as safe to come home and away from the lead lined isolation but we still can not have long cuddles, sitting on our knees etc. We still have to maintain our distance from her to protect ourselves from radiation. This is more so important for me as I was exposed to a lot of radiation this last week whilst at The Christie with her. I have had to bring my Geiger counter home with me to wear at all times as I am already more than double the level that the UK public are permitted to be exposed to and so need to monitor further exposure over this next week.
In a weeks time we will get some normality again, James and Nicki will be able to return home fully and we will once again be able to sit beside Jessica and we will be able to enjoy much needed cuddles.
August 23rd, 2016
Well mummy and her princess had a lovely walk up to the park today. First time she has been out in just over 2 weeks. She absolutely loved it and didn't want to come home. Glad to see her so happy and smiling xxx
