Haise and I have hit our coping limit today! We have hit the wall so to speak. Tired, frustrated, exhausted and in the words of my dear son desperation.........! Poor H was sick this morning, damn it! The overnight nurse didnt want to wake him to give him his anti nausea meds as a result he felt really yuck this morning. I felt so sad for him, I thought we had got him through this round without being sick. Anti nausea meds have been caught up so thankfully the sick feeling has settled. Haise is though absolutely shattered, He is so tired. I think because we havent had chemo for 6 weeks we forgot the impact it has.....Haise is asleep now......was awake on and off all night. It is virtually impossible to sleep overnight in a hospital! The great news is we are being discharged tomorrow!!! WOOHOO! We will then have a full week at home before having to be back in Sydney on Monday July 14th. We have a tough month to get through with a week at home and then a week back here and then we repeat it again. After the 4 weeks we will be able to have a slight break from the travel and have treatment from Canberra before the next 5 day stay. I am trying not to think too far ahead as the thought of all of that is simply exhausting. And how I feel right now, I cant imagine more exhaustion on top of this! We are pleased though as they have moved our Sydney admission to Monday to Friday as opposed to our previous schedule of Thursday to Wednesday. It means we will always be home for the weekends which is great for all 5 of us. I gave Haise his nightly clexane injection last night......for the first time! I will be giving these to Haise at home so I had to practice under nurse supervision! I must say after Haise having a few nervous moments.....I was approved by him as the clexane giver! He actually said my injection didnt hurt as much as the nurses! ha! Haise had 2 physio session yesterday and managed one session of 2 hours on the movement machine. He also crutched down to the nurses desk and back. He was shattered after this too. The doctors have told him that lying in bed for three weeks will strip anyones condition and its just little bits of practice throughout the day. Its just so sucky having to rip back into chemo whilst trying to regain some strength after surgery. Given he is feeling bit down at the moment, I am sure once we get home he will start to recover and feel better about working to regain strength. Our new friend Jan, our favourite RPA nurse popped in for a visit yesterday afternoon, with 2 big tubs of home baked cookies and some Freddos. She said we could have some now and then have them when we are at home next week. The kindness of this beautiful lady is overwhelming, we have only known her for 2 weeks but feels like we have known her forever. We were feeling very flat yesterday and her visit totally gave us a boost. I am so grateful to the such generous and supportive people we meet along the way in this journey. Lets face it, this whole thing sucks, it sucks more than I would ever be able to convey in any written word; BUT the beautiful people we have met and the beautiful people who love us and provide support in all kinds of ways is truly what keeps us going. My heart breaks when I look at H, trying his best to busy himself, with black circles under eyes (he also clearly needs some sun!) but when I feel the saddest it seems something happens just at the right time to lift me back up. I think H and I have done extremely well here and Phill and the kids have done extremely well at home, we havent seen each other for 2 weeks! Haise said to me yesterday that part has been harder then anything else he has had to go through. Bless this gorgeous boy of mine. Lots of nurses and doctors keep asking him - arent you sick of your Mum yet? - to which he always responds with - why would I ever be sick of my Mum! Oh the love! I know I am lucky when I hear other children of similar age or slightly older in here and speak so badly to their parents. I see Mums and Dads trying so hard to make things as good as they can and their childrens reactions must be heart breaking. Certainly no judgement from me as I know these situations families find themselves in are the most testing of any situation one could face. It would be silly to think that everyone is going to be nice to one another all the time. I can tell you though that my son is nice to me all the time (he does annoy me when he constantly speaks like Sheldon - tooooo many Big Bang episodes watched over the last 3 weeks) and I love his appreciation of all I do for him. Warm fuzzy feeling there peeps. I am finding it so hard in Camperdown ward, as I always do, seeing so many new children diagnosed. There are two young ladies about the same age as Harrison just in this week, one with a diagnosis of Osteosarcoma, the other with the worst type of Leukaemia. Not fair. So not fair. I literally have to keep my head down and busy myself and just block out the sadness and focus on my boy. I have become better at doing that but please dont think its easy. :( Cancer sucks. Cancer in kids sucks more than anything. We still dont have pathology results - which in essence doesnt make any difference to treatment - I just want to know how much death was in that bloody Ewings tumour. I would hope full death and destruction! These things do play on ones mind....as I shared with Haise yesterday that the night before I had a dream where they had the pathology results .....it came back that they identified there was a caterpillar in the specimen taken........What the????? At least H and I had a giggle when I told him. So my dear friends the rest of this day will involve getting this lad to do his physio exercises, using the exercise machine, a shower would be good......., some more sleep and hopefully something to eat for dinner. His appetite as predicted has totally disappeared. I am sure it will return once home. He has requested roast chicken and veggies for dinner tomorrow night. Once again I have to pack up all of the stuff we have here for our current transient lifestyle.....will be glad not to live out of bags for a week. Unless we have anything exciting or significant to mention later today my next update will be when we are HOME!!!!!!! yay, yay and some more yay! Em xxxx
Posted on: Fri, 04 Jul 2014 01:46:32 +0000
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