Chemo didnt happen yesterday. Hs counts were not high enough.....large bummer. We arrived at Day Stay to have counts done at 8am.....we then hung around did a few things ate breakfast at the hospital cafe to learn about 1030am that no, counts were no good. Man alive. This means blood counts done again sunday morning in the ward (we hope it runs more smoothly this weekend) and then we go back to day stay Tuesday morning at 8am and do the same as we did yesterday.....wait and hope we can get another treatment completed and ticked off the list. Was all too much for Haise yesterday morning! Then it was all too much for me! So what does any normal family do under these circumstances???? We did the grocery shopping! Ha! We have had quite a week, Abs birthday, Ali and Jess returning home which was sad for all of us, coming to terms with the reality that Mum, Nanna is not here anymore and all the emotions and things that go along with all of that, a crazy out of control puppy having a VERY hard time learning where it is appropriate to poo and where it is not appropriate....our very large and naughty other 4 legged friends yesterday causing complete havoc when somehow they got out of the backyard and DESTROYED 2 bags of rubbish sitting on the deck waiting to be taken down to the bins. There was rubbish EVERYWHERE. I was really not sane by this stage of the day. Bless my husband and daughter for dealing with the mess....I really just couldnt face it. Once again our fabulous neighbours Warren and Chris saved the day and locked the offending beasts in the carport to prevent further mayhem. I am sure they must get a good giggle out of the crazy life we live. We are so grateful to have them as neighbours and friends. Needless to say there is never a dull moment for us, I am looking forward to many dull moments though whenever they are ready to happen.Anyone have a mantra for welcoming dullness??? I think we are all at our saturation point of being able to cope with all that life has delivered us this year. Much love and thanks to so many people for providing love and support. I have not had a very good week this week and I am so grateful to my amazing and beautiful friends for keeping me upright! Jo Adam has been simply wonderful doing washing for us. I am still trying to catch up from when Mum first went to the hospice, which was 6 weeks ago. That has also been sad this week, in the washing has been my Mums things that I was bringing home to wash whilst she was at the hospice. Hard to be folding things and then stumble upon your Mums pjs...Forever grateful beautiful Jo for your help. The amazing peeps who have pulled off the trivia night extravaganza.....words cant express our thanks. The daily text messages from Ria, Karen, Kelly, Kimmi, Kylie, Chris, Kelly, Paulina....I am sooooooo blessed to have these gorgeous women in my world. Our life right now is a constant battle, there are so many things that happen which stress me to the hilt and then there are so many people who love us and keep us fully supported. Bless. Haise just wants to get this done......he wants to look forward to a chemo free Christmas, spending summer in the pool with Ab and E, getting strong again, getting ready to join the rest of the 14 year old world and go to school! We are getting close to the final rounds of treatment but with each delay brings frustration and tears. Finishing treatment is one part of this journey. Haise then faces months of rehab in terms of getting that leg ready to use properly again. The reality for us is that Haise will have the effects of treatment and surgery to manage forever. He will be on crutches well into next year......... somedays this is really hard to get our heads around, the fact that Haise has experienced something so brutal. I wish that my brain would let up a bit. Can I tell you that at least a dozen times a day I think....Haise has had cancer. Its cruel. You know what else is cruel, the Camperdown ward at Westmead produce a newsletter, its a really nice publication with information and updates on things happening within the ward and hospital. We received the latest copy in the mail this week. It always breaks my heart to read about the children who have lost their battle, the newsletter passes on condolences to families. I read of 3 children we met and I had lengthy conversations with the parents of these children each time we had an inpatient stay who lost their battle to this cruel and heartbreaking disease. Some of these children had been in the hospital for months and months. I sort of read it in disbelief that these children are not here anymore. Sadness beyond comprehension. We certainly have entered a world that no one wants to go anywhere near... childhood cancer is the most hideous disease. We count our blessings daily. We always try and find a positive each day. But when I read things like I did this week I really struggle to find the positives and my heart breaks for these families. One of the Mums I got to know quite well, a lovely lady. She has told me of the struggles she has faced on top of her daughter being so sick, she had to resign from her job as she simply couldnt manage, her marriage broke up from the stress, the list went on. Now she has to live with the loss of her daughter forever. There simply are no blessings there for her right now. Big fat sigh. Bit of a heart pouring out update today.....that is though what this page is for when it needs to happen! I did say very early on this year that I would write about living a life dealing with cancer..... it aint all sunshine peeps! Its hard bloody work and somedays I just say enough already. Add to the mix the additional situations we are having to live with on top of Hs treatment, well I think its fair to say that this family has been tested enough thanks. Finally this morning let me just tell you how wonderful Aidan Giddings is......that BEAUTIFUL boy donated his own money to the online fundraising page created by Kelly Hill and Co..... (another amazing woman right there might I point out.....) to bring it up to the goal amount. Aidan we all think you are simply too gorgeous for words. You brought me to tears. xxxx Kimmi and Richard, you are a pair of totally exceptional parents. Go you! Thankyou Aidan, you are a legend. And with that I hope everyone has a really dull long weekend, dull of course in the nicest possible way. I am praying for dull, ordinary, straight forward, productive... in terms of training this puppy to poo outside. Man alive is all I can say about puppy poo right now. Yep that sums it up. Much love, Em xxxxxx
Posted on: Fri, 03 Oct 2014 21:25:46 +0000
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