Frustration

Given how much we were told about the immune system being ravaged by chemotherapy treatment, and given we have just had the sixth round of treatment in around five months, we have been very fortunate not to have had any real complications since just before the first round of chemo - and that wasn't down to the effects of chemo, as Luke hadn't had any at that point!  He had his hickman line put in around early September, and shortly afterwards acquired a staph aureus infection in his blood, and had to have the line taken out again before it had been used.  Apart from that blip, Luke has been in remarkably good health given everthing that is going on.

Last Wednesday, Luke went into hospital to start round six of chemo.  He was fine in the morning, but in the afternoon developed a temperature.  After a dose of calpol, it subsided.  The chemo carried out, and Luke didnt seem too bad - no worse than durin other treatment sessions.  By the end of the chemo on Friday afternoon, blood cultures taken from Luke's hickmanline had grown a 'strep' bacteria - but as he seemed fine, we were discharged home.  Saturday and Sunday were both excellent days, with Luke being his normal, cheerful happy self, but on Sunday night he woke up at around 10.30, which is unusual.  We took his temperature and it was 39.8.  Our instructions are to call our local hospital if his temperature ever goes above 38, so we did.

Our local hospital asked us to check in with Addenbrooke's, as it soundedlike he would need to be admitted, and they had literally no beds in the hospital, let alone on the children's ward.  So if we went to our local hospital and Luke was assessed and did need to be admitted, we would have to be transferred somewhere else.  Addenbrooke's still wanted us to go there in order to have Luke assessed at the nearest possible place.  Off we went, and it was busy - both the adult and children's A&E were busy, which is unusual on a Sunday night at our local hospital.  But, I have to say, the service we got was fantastic - the nurses and doctors were calm and efficient, and handled Luke very well despite clearly being very busy.  We were assessed, given broad spectrum antibiotics to begin dealing with whatever the problem was, and the local hospital had discussed with Addenbrooke's and decided to transfer us there by Ambulance.  Within four hours of leaving home, we were on a ward in Addenbrooke's and settling in (in the same bed he had been in just a couple of days earlier for chemo).  I think that is pretty good going.  There is something depressing about following an ambulance with your wife and child in the back of it along a foggy road at 3am though - I dont fancy doing that too often.

So - that was Sunday night. By Monday afternoon, Luke's temperature was back down to normal levels, and it has stayed down since.  We were put on certain antibiotics on Monday evening, which I recognised as being the same ones Luke was given for two weeks to clear the staph aureus infection in September.  That worried us.  Then we were told on Tuesday that the blood culture from the previous week had grown a staph aureus.  But everyone was confused about why Luke didn't seem particularly poorly, and why it had taken so long to grow.  He is definately one degree under  - but part of that is probably being cooped up in the hospital.  Each day we have been wondering what is happening, when are we likely to come home.  He doesn't seem too bad - but having dealt with staph aureus once before, we know how serious it is. 

Today we were told that he needed to complete a two week course of antibiotics that started on Monday night.  That means another week and a half at least.  If during that time his temperature spikes again, the line comes out.  That would mean two more operations - one to take it out, and one to put in a new one.  Along with that is obviously additional time in hospital, and delays in the next chemo and possibly the surgery we are waiting for on his spine. 

We have had a good run of things, only spending time in hospital for the chemo, and day trips for scans and tests, with the occasional flying visit to A&E for a new NG tube when it has been pulled out.  It has become quite routine, and within the boundaries of what is normal in this situation it has become normal.  But each chemo session is only a few days.  I am remembering very quickly what it was like last August, September and October when Luke was in for weeks at a time.  It isn't something you would ever choose, and I just cant wait for them to get home. 

On better news, I have my first appointment to donate blood platelets in a couple of weeks.  It means I wont be donating blood once every four months any more, but I will be able to give platelets every month.  I don't know what I am letting myself in for, but I do know I was really pleased to be told that I am able to do it, and that I will be helping people dealing with things similar to Luke. 

I haven't yet got round to sponsoring my good buddy Rich and his team for the London Marathon, but if anyone reading feels like doing a good deed, please click on the link below and sponsor a team of unlikely atheletes in their bid to raise money for Children with Cancer UK - uk.virginmoneygiving.com/team/louis .  I will definately be supporting them.