23.8.12 - utter despair.

Well in LGI again, no wi-fi so I am writing this on my I - phone!

To commence where I left off last week!

Harry's tube had come out and Harry was due for his penultimate radiotherapy treatment.
The radiotherapy went fine, Harry listened to One direction, which Lucy the radiographer had brought in especially for him. Harry was isolated though from the others as he had diarrhoea in the night. We had a special guest today, granny, at Harry's request to see him having radiotherapy. He was very excited about this and showed Granny what happens, now a very knowledgeable boy regarding radiotherapy.
We had a review with the radiotherapy consultant, whom referred us back over to the team at LGI to reassess Harry. His bloods had been taken and they indicated that a platelet transfusion was needed, before they would repast his NG tube, in case the tube caused any bleeding as it goes down. Platelets help with clottIng, so very important if any bleeds were to occur.
Harry was very disheartened and unhappy about having to go to LGI. He was wanting to go to the little farm near the airport in the afternoon, so this became his chant, wanting to go to a farm.
I was very worried about his evident continued weight loss as he got on the scales in radiotherapy. I needed to discuss this with a doctor in the oncology clinic. Whilst waiting for the platelets to arrive we are seen by a new haematology doctor who was on call that day. She has seen Harry's full blood count and as he is not clinically dehydrated she is keen to send him home, on the same anti sickness drugs, that clearly are not working. By chance a nurse who saw us in radiotherapy earlier cane in the room as the doctor was there and played devils advocate. She asked what I thought should happen and I said that I thought he should be kept in overnight for his medicines to be reviewed. the nurse carefully worded things, so not to undermine the doctor, but basically thought that this was needed, as Harry was losing weight and continued to vomit abd diarrhoea had commenced, full throttle! Throughout all this discussion Harry was ensuring no one forgot about him, as he grunted and groaned about a tummy ache, in between chanting that he wanted to go to a farm, though clearly too unwell to go to one! I was holding back my own agonising heartache at having to witness Harry in this state and wanted to tantrum on the floor myself that Harry was soooo not well and how the thought of him just being sent home again for us to play nurse absolutely appalled me and terrified me! I don't get a day off fron this job and exhaustion probably doesn't come close! However, I maintained my dignity and with that power to exert my preferences over Harry's treatment.
A different nurse set up Harry's platelets and was nearly in tears herself at the state of Harry and it was decided that Harry would be admitted to observe him.
Once he was transferred downstairs to our usual ward, where he knows all the staff and he had their attention he transformed! Funny that! He was isolated again, but he had one to one attention and all the nurses and play workers greeted Harry with a smile!
Doctor Kevin, a fantastic doctor who can really engage with, well everyone and make them laugh, a rare feat! Well he reviewed Harry. He immediately took him off one anti sickness medication as apparently the combo that he was on could cause seizures! He was put on a new anti acid drug to ease reflux and the burning sensation in his gut. Well Harry was sick again the thurs night, but was in good spirits all Friday and so released back home. Radiotherapy was over! The relief as harry got on the table for the last time was unexpectedly overwhelming and i shed a couple of tears as i went into the observation room, managing to compose myself in time to speak to harry on the intercom. I transported harry between hospitals and as we returned to lgi we listened to one direction top volume,
All 2 songs we have over and over, with a huge smile on our faces! The overnight stay in hospital meant the responsibility of caring for Harry had been lifted from my shoulders for one night and the nurses managed his feed, medicines etc! A little respite! 
So the return of Harry and we all had fish and chips for tea. Even Harry had a small amount! Yey! In fact fabulous, hope of this sickness being banished!
Feuding commenced again between Harry and Callum, so normality really.
On Saturday, Paul was off, so we had a family trip to Hesketh farm, (we figure Harry's immune system has recovered enough to put up with the possible germs on farms and anyway sometimes happiness is a greater thing) to fulfill Harry's wishes from Thursday! We spend a couple of hours there and  bump into some familiar faces too! Harry and Callum were made up to visit the farm and we managed to visit the mythological world of normal for 
a couple of hours. Harry even managed to ride on the big go kart, unsure at first if he had the strength to turn the big pedals, but sure enough, after a couple of attempts he managed a successfull 4 Laps round the circuit and Callum relished in being a passenger on either mine or Paul's lap. We even finished the day with a BBQ with, Claire, Tom, Adam and Sophie! The sun shone and we revelled in it! We revelled in being normal. No sickness and no hospitals.
However, as our story seems to be these days, Harry's sickness setback in after his medicines were given Sunday lunchtime. With the change in weather, came the much change in Harry from the chap 
he was on Saturday! That growing all too familiar tense heart ache started to resume. If only life was 
like Fifty Shades of grey and my ever familiar growing tenseness deep inside could be due to an orgasm, my world would be a better place. Alas, the tenseness as said is from that all too familiar heartache that goes with the inability to protect my child from the side effects that accompany radiotherapy and shatter all our worlds!