Tuesday Continued

So Billy was back and awake.  I was so so relieved.  Against all the consultants predictions Billy wolfed the whole bar of dairy milk straight down.  He then managed to eat toast and marmite and some cereal.  He seemed completely non plussed by the whole thing.  He wasn't even in any pain from the two procedures!  This made me feel better, surely if he wasn't in any pain then he couldn't be ill could he? I went from convinced he had Leukaemia to convinced that they must all be wrong and he had the virus that there was an outside chance it could have been and not Leukaemia. 

As the day went on Billy was feeling lots better, although he was still on the IV antibiotics he was in the playroom and then running around the corridors like a madman.  This was even better as far as I was concerned, he just had so much energy and was eating well!  We now had our own room which was so much better as we didn't have to share a toilet or could just stay in the room and watch TV. The room had a massive window which gave us a view of the city and surrounding area and we loved watching the cars and people.

After lunch my parents came in and although they didn't share my optimism that Billy was ok they tried to be cheerful.  I even managed to get lunch and enjoyed it. 

Then late afternoon Juliet came back and said she needed to talk to me as she had the results.  My dad stayed with Billy whilst my mum came with me to the quiet room, which is totally different to the normal consulting rooms, all sofas and niceness, to get the results.  She brought nurse Mel in with her and sat us down.

Billy has Acute Lymphoblastic Leukaemia was what she said. Oh my god, the worst possible thing that she could have said.  What was this, what did it mean?  I broke down, didn't even try to hide it.  I couldn't stop crying, why is this happening to us?  Hadn't we been through enough already? Why my son.

Juliet let this sink in and let me try and compose myself then she began to explain more.  Acute Lymphoblastic Leukaemia is most common in boys age 2-4 ( Billy was 3 ) it also was a Leukaemia they knew well how to treat.  If he had to get Leukaemia then this was 'the best one' to get - Juliets words. The treatment was all Chemotherapy and they would be starting as soon as possible if Iagreed.  Of course I was going to agree I said, Juliet said I had made the right choice in having the chemo but in my mind there was no choice.  I had to give Billy every chance that he could to beat this disease and to get better.

Juliet gave me lots of leaflets / books on Leukaemia and in particular ALL and said it would be best if I take in what I could now and then read more later,  Juliet then explained all she could about ALL, i did listen but to be honest I can remember very little of what she said to me now.  One of the things I do remember her saying is that they think it is caused by a virus and if they can find it then they can eradicate it.

Juliet explained that the treatment would be a long time, at least 3 and a half years.  This had been worked out through years of research and for some reason boys need a year longer than girls.  It would be periods of intensive treatment and periods of maintenance treatment.  Billy would need lots of different drugs.  She also said that the bone marrow was being sent away to be looked at so the genetic make up of the Leukaemia cells would be determined which again would dictate what level of treatment, ie how much of the intensive treatment he would need.

Juliet said it was great that Billy had been diagnosed so early but this made no difference to wether they could cure hm just on how well he could cope with the chemotherapy.  She also explained that he would definitely lose his hair.

Juliet then explained that as a lot of the chemo is intravenous (IV) I would have to decide wether Billy would have a hickman line, sometimes called a wiggly which is a line outside the body or a port a cath which is implanted under the skin and accessed when treatment is given.  As Billy was quite an active child and also enjoyed swimming she recommended the port-a-cath.  She explained that this would be put in under general anaesthetic and the it would be there for the whole treatment time.

I went along with Juliet and chose the port- a - cath.  I thought thus would enable Billy to have as much of a normal life as he could.  I as told that the treatment would start properly on Thursday which was went he would have the operation to have the port put in.  Thursday seemed an eternity away but there was nothing that could be done until then.  Fear gripped me what if he needed treatment now?  Juliet answered a few more questions and reiterated that Billy had a very good chance and then we went back in to Billy.

I didn't know what to say or do, how to you tell a child they have Leukaemia....