Chemo

Well the day after the port was put in, the chemo started. As much as I had been prepared, seen the treatment plans for the first 8 weeks to actually start them was another milestone.  Again it brought back the reality of what he had again.  I had all kinds of visions, none of them good as to what the chemo would do to him.  I saw the other children on the ward and saw how the chemo had changed them and to be honest I was scared.

One of the things I had been told is that Billy could have a severe reaction to any one of the drugs.  At the time I was told I didn't really consider this but as it was about to start I did.  I suddenly though what if the drugs they are giving him to get rid of the leukaemia make him react badly and die?  I know this sounds a bit silly now but at the time it didn't.  I was then thinking what am I doing, have I made the right choice?

The first thing was to start Billy on steroids.  The steroids he was give, and is still on monthly now, was Dexamethasone.  Sounds quite a nice name for a drug but believe me its the one with one of the nastiest side effects, but more about that another time!  In Southampton they were tablet form and as I wasn't sure wether Billy would be able to swallow tablets the wonderful nurses crushed them and mixed them in a tiny bit of squash.  Billy wasn't stupid tho, he knew it was a medicine but luckily he wasn't too bad about taking them.

They did warn me about the side effects of the Dex, the eating, the mood swings, the sleep less nights and the nightmares but for the first few days he actually was a complete angel on them!  He was also on antibiotics, firstly for the suspected infection and i believe some to prevent infection after the port had gone in.  He was still all bandaged up and he was very self conscious of the port and didn't want me looking at it, but he didn't complain.

Around this time Billy started having an upset tummy, both ends.  I was quite worried, after stupidly googling the chemo and from what people, other parents included had told me this could be a sign of things to come.  The nurses assured me that it wasn't a problem it was just his body with the antibiotics but if it dd continue he could have anti sickness drugs.  I was also told as long as he wasn't sick for 20 minutes after having meds it was ok.

He then had his first dose of Vincristine. This is the chemo drug he has had the most.  It was a clear liquid that was given via the IV line.  I was warned that this might make him lose his hair, in fact they were sure that the first intensive weekly doses of it would definitely make him lose his hair.  This was one of the things that really upset Billy, I remember my dad offering to shave his head if Billy lost his hair and he was inconsolable.  As it happened I came up with a much better idea, but that's for a later blog!!

There are different stages of treatment, the intensive periods which is very full on, large doses of all the drugs which is there to get rid of the leukaemia and then the maintenance stages which are still a lot for a child but less than the maintenance.  Depending on how the leukaemia cells are made up genetically and other factors including how well the child responds to the first intensive period depends on how many total periods of intensive treatments they have.

Another thing that the testing of the bone marrow etc tells the doctors is how many leukaemia cells percentage wise there are.  I remember Billy's original figure was 56%.  At the time i remember thinking this was awful because it was over half.

The different medicines the kids have to take include a drug called peg asparaginase.  This was injected directly into Billy's thigh muscle.  The fun we had holding him down once he saw the size of the syringe was unbelievable.  I think though that I did manage to get through to him that again it was anther way for the good aliens to get in and fight the bad aliens away!

Although Billy had been quite well when we first came into the hospital the operations and the various drugs began to take its toll quite quickly. People who had been in a few days before saw such a difference, I tried to put on a brave face but inside I was worried to death.  At this time, Billy who didn't like being examined already became a lot worse.  I really felt for both the doctors and for him, I don't think i would like to be prodded about all the time!

The amount of meds he was having seemed huge to me, I was worried how I would cope when we were finally allowed home, it seemed so so much to be responsible for.  But we both wanted to be home so I would have to learn...