Tuesday, 26 June 2012
26th June home time!
well would you believe it's been 2 months since Harry had his tumour removed via an 8 hour operation! Seems a long time ago! That is because we have just jumped another hurdle of Harry's treatment plan and that is him having his high dose chemo, which wiped out his bone marrow and at the same time blasted any remaining cancerous cells in his bones and bone marrow. He then had his stem cells replaced, which has enabled his bone marrow to regrow. He managed very well for the first 10 days here. We arrived on 16 th May. He then well and truly crashed and burned as expected, then picked up, then crashed again with this veno occlusive disease which is blocked veins in his liver. Harry was very compliant as said and as a result recovered from this in about week and a half! It Seemed like eternity, but as said intensive care could very easily have been our destination, but thankfully it wasn't! So since 18 th June whereby Harry was attached to 5 machines and was the wire man, with his many tubes dangling from him! However, now he is off everything intravenously. yey! He was sick quite a bit last week, as his gut got used to his feeds again, rather than intravenous food. He has moved over the weekend towards taking his normal feed, which has higher calories. He has kept this down and we think fingers crossed is ok to tolerate this. He is on feeds night and day currently. Once home, we hope his appetite comes back and he will eat proper food ASAP! It has been a rollercoaster 6 weeks. We have warmed to the nurses on this ward and they have warmed in turn to Harry's vibrant nature! It will be strange to go home. Talking of home, discharge is to be tomorrow! Yippee! Though slightly apprehensive as his immunity is low and so he is still very much at risk of picking up infections. We are to return on Saturday for Harry to have a platelet transfusion and hopefully we can stretch these out to every 3 days. Over the forthcoming weeks his platelets will maintain themselves and currently this level of transfusions is as expected after the treatment process he has gone through. It will be strange to have a front door, whereby our space is private again. It has been hard at times having everybody come in and out of the room so much. Coming out of the shower, dressed of course! But getting my hair combed in front of nurses, trying to find my deodorant etc with others often around. Also sharing space with Harry all the time! So 6 weeks it has been! Harry has done very well to come thus far, including getting over his liver complication! Harry is a very strong boy. We do need to remember what he has been through, like today he was running about like a mad man for a while, but became tearful and tired this afternoon and slept soundly for 2 hours! This is unusual, as Harry doesn't often sleep in the daytime, but illustrates how fatigued exertion of energy makes him! we need to remember that it'll take a while for him to build his stamina up and we need to work on this once home. He has been confined solely to his bedroom and more recently the very short corridor outside the 4 rooms on the bone marrow unit. Therefore, he has not been able to move around to any great degree. Therefore, suddenly being home with space will soon exhaust him! However, Harry is determined! We did have some fun at the weekend though and went to see Bruce Springstein in concert! 3 1/2 hours Bruce worked the stage and at 62! I couldn't do that now! Not that anyone would pay to see me perform and work the stage! Ha ha! My friend Jenny stayed with Harry in hospital. Unfortunately, he wasn't as settled as hoped, partly due to his gut still getting used to the feed. However, all survived - thank you Jenny! My parents had Callum for the first time to stay the night, so thank you too! So Paul and I returned to an empty house, which felt a little strange! The next day we took Callum to Sherburn Airfield. The flying club put on a fun day for Candlelighters each year. We had hoped Harry could come, but alas no. However, we all had fun. Paul went up in a little aeroplane, Callum and I went in a fire engine down the old runway with lights and sirens on and we all squeezed, and I mean squeezed, my knees were next to my chin, in a TVR with dinky seats in the back. Again down the runway! Paul of course had a trip on his own going faster down the runway in another TVR! We just hope we can take Harry next year as he would have loved it. Oh and I missed out the bouncy castle that Callum loved too! Callum was also able to see his brother at the weekend and both played lovely for a few hours Saturday and Sunday! Harry said yesterday that what he was looking forward to most about going home was seeing Callum! They fight, but they love each other. Sooooo home it is. It'll take a while to settle back in. paul has started his new job and we have to get used to him not being there lots again, having spent the last few weeks with his family! Life goes on! So the next step... An assessment on thurs in the radiotherapy department for Harry. Radiotherapy is unlikely to start for another month, but the idea is to talk to Harry and ourselves about the process. Then another 6 months of drugs after that to prevent the cancer coming back! So March roughly, when we hope to be at the end of the treatment program! As said, as we are progressing through each hurdle and getting nearer the other side, many are beginning their treatment. I saw one 16 year old's mum today, due to her cancer she has to have her leg amputated in a couple of weeks! Life is so hard at times, the twists and the unexpected! So when dreading the 6 week holidays from school, try to think that you have healthy kids. Child care issues may be a pain, but at least you are all able to enjoy life, as many undergo viscious life saving treatment and I will try and hold that thought as I may too spurn the holidays when back at work!