childhood cancer

childhood cancer

Friday, February 24, 2012

Nearly Home Again

So Luke has been in hospital for nearly two weeks now since going in with a high temperature the Sunday before last.  He just needs to finish his course of antibiotics, which should end on Monday, and I get my family home again (Letitia stays in hospital with him when he's in, so I'm home alone).  We were expecting that he would be in for the next round of chemo on Wednesday, so only a day or two at home next week, but we even have a reprieve from that.  I normally don't like delays in his treatment, but after two weeks without them home, I have to say that this time, I am pretty happy about it.

Letitia and Luke had a trip out today from our local hospital up to Addenbrooke's for a GFR test (test to make sure Luke's kidneys are still functioning well, as one of the side effects from the chemo can be kidney failure).  While there, it was arranged that his MRI scan will happen next Friday.  We have been waiting to find out when this will be, as the scan he had in January showed something which the spinal surgeons wanted to check again before operating.  This meant the operation to cut the rest of his tumour out was postponed, and in the mean time, the chemo continued.  Our consultant decided that with the scan set for Friday, he wanted to see the results of that and make decisions about surgery before more chemo. 

I was pretty anxious about the surgery when we thought it was going to happen in January.  The postponement meant that all the time I spent psyching myself up for it has to be gone through again.  I can't really explain it, but the surgery is a major operation, very close to the spinal chord.  There's a lot of risk with it (especially in my paranoid mind!) and it is one more step in this whole process that I would give anything to be able to do for Luke.  An added dimension to this operation is it will tell us exactly how successful the chemo has been so far.  We know the tumour initially shrunk, and has been stable for a while.  But as our consultant says, the tumour will either be a dead mass of cells ready to be cut out (good news), or will be a 'healthy' tumour, effectively being contained by the chemo, but not killed by it (bad news).  If it is the latter, there then becomes a question over how successful the chemo can be in mopping up any stray cancerous cells around Luke's body.  We'll know more soon I suppose.

For the GRF test, Luke has to have a cannula, which is basically a needle into a vein which can have syringes and other things attached to it to put things directly into the blood.  They can't use his hickman line, as they put a radioactive substance in, which would contaminate the line.  Blood is taken 2 hours, 3 hours and 4 hours after putting the radioactive stuff in, which measures how much is being cleaned out by the kidneys.  Because of the hickman line, Luke doesn't have to have cannula's very often, which is brilliant.  For a while back in August and September, it became like he was a pin cushion, and they even ran out of veins they could easily get to for a while.  Having to hold him still while doctors tried time and time again to find a vein with a needle were some of the other occasions that I would have given anything to have gone through it instead.  But, Luke is a tough little boy, and even if he may have screamed while they were doing it, he always got over it almost instantly.  Letitia said today he was a bit put out for a while because he would use both hands to play with his toys (one hand was quite heavily bandaged and hand a splint to stop him pulling the cannula out or catching it on anything).  Once he got used to crawling and playing with just one hand, he was fine.  It made me think back to August, on the day of his first operation.  He couldn't use his legs (they stopped moving, which is why we got sent to Addenbrooke's for an MRI to begin with - to find out why he was basically paralysed from the waist down), and he had a cannula in one arm with a big splint and bandages.  It was a pretty difficult emotional time, but before he went off for the operation, we had some time with Luke in the play room on the ward.  He was laying on the floor, smiling and laughing with us, one arm and both legs out of action, and frantically waving his other arm.  He was in such good spirits even then (undoubtedly helped by some pretty strong pain relief at that point) - they way Luke has dealt with this whole nightmare has been the single biggest thing that has helped me deal with it. It may sound strange to say it about a one year old boy, but my son is my hero - far tougher than his dad, a real little trooper who is just so happy so much of the time.  I can't wait to spend some time with him and Letitia this weekend, and then get him home again next week.

Thursday, February 16, 2012


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 - .  I will definately be supporting them.