We managed to get away for a few days and enjoy some quality time together. It was lovely to see the kids out playing and enjoying themselves. I honestly don't think Adam's energy levels have ever been higher.
Of course things wouldn't be right without a little bit of hassle thrown in and so it proved.
We were planning on going down to the coast on Friday evening and staying until Wednesday, as we had to be back Thursday for Adam's CT scan. However, having been referred to University College Hospital in London for Adam's MIBG therapy we received a letter informing us that an appointment had been made for us to see the consultant there on Tuesday afternoon! The Royal Marsden are currently having a new children and adolescent centre being built that is due to open next year. At the beginning of this month the building works break through into the existing unit and will take out of commission the 3-bed bay adjoining the special lead-lined MIBG room. The expectation is that it will almost certainly be impacted in some way; power, water, drainage, etc. as to render it unusable. For that reason we've been referred to UCH. Alison called the hospital and explained our plans to grab some precious time away whilst we could and they agreed to move the appointment to 9am on the Thursday which, whilst not exactly convenient, was the only other time available before Dr Gaze himself was away. Thinking that we could spend the day in London after the meeting we then re-arranged the CT scan to last Friday morning. Hopefully you're all with me so far!
The results of the CT scan came back pretty much as expected. The mass was, if anything, very slightly smaller than on the last set of images and showed signs of further calcification. The scans will be sent over to the surgeon at St George's who will be performing the resection of Adam's tumour.
On Friday afternoon I had a meeting in London with the trustees of The 2Simple Trust. With the charity undergoing structural changes as it becomes the Neuroblastoma Children's Cancer Alliance I was keen to go along and participate. Of course the meeting went on longer than anticipated and consequently I wasn't overly popular when I arrived home just before 8pm. By the time we arrived at our destination it was almost midnight, but Adam didn't seem to mind. On the contrary he was thrilled with the fact that he was up so late for the second night running, having spent the previous evening watching JLS at Epsom Downs racecourse. 'It's nearly midnight again?' he asked, and when I nodded he clenched his fist and exclaimed 'Yes!'.
We had 4 full days away and it was just what we'd hoped it would be. For a while I almost forgot about the 'C' word. Seriously.
On Wednesday after we'd been out for the day it was time to get the house cleaned up, pack the car and head for home. 'Leave things as you find them' I was always taught, so after cleaning and tidying each room we declared it off limits until eventually we were confined to the kitchen. With just a few items to wash-up, the kitchen floor to sweep and mop, and half a dozen items left to go in the car, Jessica kicked the football into the neighbours garden. Adam put his hands on to the brick wall so he could lift himself up to see... and was stung on the finger by a wasp. Oh how he screamed.
The site of the sting was obvious and within a couple of minutes his finger had started to swell. When it then spread further to his hand we called the hospital to ask them what we should do and they advised us to have it looked at. Another 15 minutes and we'd have been packed and locked up, but instead Alison left me to clean the kitchen (one for the conspiracy theorists) whilst she drove Adam to St Richard's Hospital in Chichester. Fortunately by the time they arrived the swelling had begun to recede of it's accord. After a quick examination, and a slightly longer delay whilst they checked whether there were any other potential problems relating to wasp stings and cancer patients, the intrepid hospital explorers returned once more. And just as we had on our outbound journey the Friday before, we set off for home two hours later than we had originally intended.
Despite the resultant late night Adam was quite chirpy the following morning when I woke him just before 7 o'clock so that he and Alison could get the train up into London for the 9am appointment at UCH. Alison met and talked to Dr Gaze, and then visited the rooms where the MIBG therapy is carried out. At the moment there are two different types of therapy that Adam might have. Which will depend largely, I think, on how many stem cells we end up with after the next harvest. Option one is less potent and will involve Adam being isolated for a week to 10 days. Option two is a more aggressive treatment in which the MIBG therapy is administered twice alongside chemotherapy (topotecan). This involves a week in isolation at UCH, a week at home, another week in isolation at UCH, another week at home. The complication is that when Adam is 'home' he cannot be in the same house as Jake and Jessica because of the level of radioactivity in his body. There are other restrictions too - anything Adam takes into hospital won't be coming home with him. We've already been advised to take old clothes and nothing of value or importance. Need to work out a strategy for soft-hat and sleeping blanket...
On the stem cell front we were expecting to go in this week to try for another harvest. Stupid us. Coordination and scheduling considerations, and as yet no approval (funding) for Plerixafor, means we are pencilled in for next week instead, with collection 11th - 13th. I am determined Adam will have this drug, even if we have to take him outside of the NHS to get it. With surgery to follow the time that Adam will be without active treatment for his metastatic disease is praying on my mind. I certainly don't want it getting any longer.
It's back to business.
Despite the resultant late night Adam was quite chirpy the following morning when I woke him just before 7 o'clock so that he and Alison could get the train up into London for the 9am appointment at UCH. Alison met and talked to Dr Gaze, and then visited the rooms where the MIBG therapy is carried out. At the moment there are two different types of therapy that Adam might have. Which will depend largely, I think, on how many stem cells we end up with after the next harvest. Option one is less potent and will involve Adam being isolated for a week to 10 days. Option two is a more aggressive treatment in which the MIBG therapy is administered twice alongside chemotherapy (topotecan). This involves a week in isolation at UCH, a week at home, another week in isolation at UCH, another week at home. The complication is that when Adam is 'home' he cannot be in the same house as Jake and Jessica because of the level of radioactivity in his body. There are other restrictions too - anything Adam takes into hospital won't be coming home with him. We've already been advised to take old clothes and nothing of value or importance. Need to work out a strategy for soft-hat and sleeping blanket...
On the stem cell front we were expecting to go in this week to try for another harvest. Stupid us. Coordination and scheduling considerations, and as yet no approval (funding) for Plerixafor, means we are pencilled in for next week instead, with collection 11th - 13th. I am determined Adam will have this drug, even if we have to take him outside of the NHS to get it. With surgery to follow the time that Adam will be without active treatment for his metastatic disease is praying on my mind. I certainly don't want it getting any longer.
It's back to business.
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