Wednesday, 15 August 2012

15.8.11 radiotherapy

Radiotherapy continues and with it an explosion literally of vomiting! Harry was clearly losing his appetite towards the end of last week, but hey we thought he is not actually being sick! However, this all changed at 6 am Saturday when Harry vomited and brought his NG tube back up, which meant we did not have a hospital free weekend, but a trip to LGI, to have it refitted. With this episode brought doom and gloom for me, as i thought the real side affects would have been another week away, from information given. Plus, we were so enjoying having vibrant Harry back, that I was neglecting to face the side affects, even though I knew they were highly likely to be there.

Harry was disheartened last Friday to have had his visit to hospital lengthened as he needed a transfusion at LGI after his radiotherapy at Jimmy's. He needed platelets, so these can be a  quick 30 mins, but its the waiting time  once at clinic at LGI that can be the real delay. Our goal Friday afternoon was to go to Harewood and meet friends up.This remained our goal and we got there in time to enjoy a good afternoon. It was the first time Isabella has been able to play properly with Harry, as on recent previous visits, Harry has felt unwell. So it was great seeing the children play and Harry running about. However, this halted like a scratched record getting stuck as said above, Harry vomited Saturday am and it was all change! Harry remained very sickly over the weekend. Would not eat anything and could hardly tolerate his feed on a night time down his NG tube. Therefore on the Monday when at Jimmy's for radiotherapy when they weighed him, I was not surpised that he has lost weight, the scales said he has lost 2 pounds. Not a lot to you and me,  but to a litttle  skinny boy this is a lot. I could have wept when i read the reading on the scales, as you don't know how hard is has been to see Harry lose weight during high dose chemo, but to gradually put each gram back on has been a joy to witness, so to lose 2 lb felt gut wrenching. Also, to know that Harry will be poorly for another 2 weeks, is hard to bare. I felt that he should be hospitalised and put on an intravenous feed ASAP and all medications to be given intravenously, as they were when he had high dose chemo. This would solve the problem of him not tolerating his medications and keep some weight on him. However, the logistics of Harry in reality being hospitalised, whilst Paul is at work, becomes another conundrum to think about.
The consultant for radiotherapy felt alternative antisickness drugs should be prescibed and commenced immediately and Harry would be monitored as always each day in radiotherapy, so only mon - fri.  We go with this. Harry was not in a good way though and the wait in pharmacy for the new medicines was supposed to be 10 mins, but an hour and  a half  later, we finally get them dispenced.  I was degtermined to stay waiting in the reception area where a groaning sickly Harry could be heard within any earshot distance, but even this did not speed the process up!
We then had to go to LGI for Harry to have a platelet transfusion and there whereby I commenced Harry on his first dose of one of the 2 anti sickness meds. In my scramble to get the medicine down Harry's tube I knock the bottle over and spill half of it all over the floor and of course it is like glue!!!!! Harry was so lethargic and sickly that unusually I had to wheel him up to ward 79 in a pram. He remained in unusual silence until we were done at 4pm. Then he had a new lease of life, unsure due to the medicine or due to the fact we were able to go home and Harry could help me pick Callum up from Nursery and play the football game he had been longing to do since we dropped Callum off at 9am.
Harry has been brilliant in radiotherapy, but this week is so hard as Harry really does not want to go to hospital each day.  On Monday morning having been put out about not being able to get out of the car and play football at Callum's  nursery for the first time Harry was protesting about all the treatment he has to have and asked why he could  not just go and play with his friends. He said this as we were driving to hospital and I had to fight back the tears as in reality life is so unfair and also trying to explain why he needs the treatment, that in fact if he does not have it his chances of playing with his friends in the future will be vastly reduced as he will have much less chance of ultimate survival.
Monday night seemed relativley settled and Harry managed half his feed bag, but alas was sick Monday am, but as Harry said at least his tube stayed in. I thought the drugs may have been working, but Tuesday lunch time he was sick again. He brightened up a bit at Granny and Grandad's, but Tuesday night was not  good either and at 4am his tube promptly came out again, just as Paul arrived home from work, which was a godsend as Callum woke up too!
Today (wednesday) Harry had his tube put back in, but there was no consultant to discuss Harry with. I did ask the nurse to bleep the dietician and we discussed Harry's sickness and I suggested  trying a thinner lower calorie feed, to be kinder on his tummy. We collected this from LGI today after Jimmy's and Harry has had a couple of successful half hour feeds this afternoon, so I felt good about this evening. That is until 11pm, whereby Harrry awakes crying, he has had loose bowels in bed and promptly sat up and vomited all over his bed and yup his tube has come out for the 3rd time this week. A prompt change of sheets and a clean up of Harry and he has resettled. Paul is at work and i guess it is best Harry just sleeps and we sort his tube out again tomorrow. This is truly horrific for Harry and he said tonight, 'what is all this sickness about' bless him. I feel we are left to our own devices. Radiotherapy is serious stuff. Harry's gut is targeted and i feel is creating even more problems than perhaps usual, I don't know, but when Harry was this poorly on high dose chemo, he was in hospital, monitored by nurses, doctors and the dietician daily. The responsibility was out of my hands and they made all the deisions re medicines, feeds etc. I feel really he needs intravenous fluids and a feed. I will be seeing the raditherapy consultant tomorrow. Harry is not keeping hardly any nutrition or fluids down. I am very worried about him and his weight plummeting.
I must say Harry has also returned to being fractious, very attached to myself, whereby leaving the room causes him to scream after me. This is so emotionally and physically draining for me. I can't begin to imagine how Harry's little body feels though, but he does summon bits of energy at times. In the playroom this am we were making pirate crafts. In particular a parot out of a cardboard urine bottle. Photos will follow when finished. He really tries to put a brave face on and get on with it, but he has severe stomach pains at times and then the sickness usually follows.
I knew that Harry would dip with radiotherapy and I feared how emotional it would be having seen him get his energy and vibrant nature back, to being a skinnier, little poorly  chap, not eating, sickly and generally being hit hard by this radiotherapy. You hope that the side effects will be mminimal and he will sail onto the next phase, but not to be. 2 more sessions left then hopefully he will pick uup towards the end of next week. We are exhausted with all this treatment and effects. The emotional rollercoaster continues. I'm sure it will take its toll physically on us, but for the time being we have to do our best to keep things going. i try to slap on the smile and get Harry through each radiotherapy session, knowing as said it is vital treatment and to keep encouraging Harry as best we can. The mask goes on and generally stays on as to take it off would just leave myself in one big heap on the floor, no good to anyone. Perhaps next week, when this leg is over, I anyhow will breath again and start to take the body armour off. Once Harry is well again and back to bouncing off the walls, I know I immediately smile with him  and the world is a better place.
Callum picks up on Harry being unwell and decides he is sick too at times. Callum wants to play with Harry, but he is not always up to it and Callum gets upset by this at times. They were playing brilliantly last week, so there is hope!
Another leg of the journey nearly complete though and with this Harry is just beginnning to sprout a bit of hair!!!! That I can't wait to see! Though no hair, equalls no brushing and reduces the effort needed to get out of the door looking presentable!!! Harry is so proud  that hair follicles are just about apparrent on his head. He copes so well and when picking Callum up from nursery several children were poiting at Harry's NG tube and asking him why he has it and why he has no hair. He answers thesm and explains he has been poorly and the tube helps him have food. He ensures they know its not for long though.
I am willing for  August sadly to be over, so we can get Harry back on track. I remember last summer working 4 days a week and thinking we must make the most of next summer, before Harry starts school, but you can never count on next year being what you had hoped. I guess, make the most of the here and now as best as any of you can, live for the moment!!

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