5 years...5.

Wow.

Well I can attest that we are lucky, she is here.  She breathes and laughs.   Life is good.  Until its not.  It's not because of cataract surgery, end of January.   It's not because of broken hips which have said stop to the one thing in our life which is normal, skiing.   DoI reeducate this blog, i.e bring it back to life.  

Life sucks so therefore I want to; life sucks so therefore I think I shouldn't?  Life is actually beautiful, so therefore I should not revisit?

Life is good because of the WR people, the people who love before they think, or at least that is my take on them.

The Jens; can I say any more?   The people who have the absolute honour of knowing a "Jen" are people like "BoB", or "Dave" or "Ross"...oh my jessus its a boring brigade.

But I will always call them the Jens, as it is how I have know all of them. 

Three years and 8 months tomorrow, day zero. Wow. Not going to say life has not had its challenges, but nothing like the days before three years and 8 months.

I have seen things come and go. I have seen generations pass and some begin, to quote Oprah, the thing I now know for sure is that life goes on.  I will never forget, no I won't.  Elephants, day glow orange, nope I won't.

Gracie is thriving, she is defiant and headstrong, difficult and beautiful, she is happy and sad and co-operative and frustrating. in other words she is normal. Or as normal as I would like her to be, Secretly she is really really goofy and I don't mean in the fun cute way, I mean in the downright annoying way.  But I love it; even Gary doesn't really get that farts are that funny and that making a funny face while brushing your teeth can lead to an unbelieveble amount of giggles.

Why am I back on the blog post? Well I am secretly hoping nobody is interested and I have tried to do a written journal, complete with a writing desk and everything, but my hand cramps and I can't get my thoughts down fast enough. It sucks. I love my journal, its all leather bound and feels and smells old. I just can't write in it. Poor me, First world problem.

I had this blog published into a book for Gracie over a year ago and really didn't look back, but thought I would see what is happening.  No biggie.

Always changing....

As I look at the beginning of a new year, something that has always represented so many new beginnings in the last 44 years of my life, I realise that this is the first year I actually feel alive.  I went through my childhood and teens really thinking that the only thing wrong in life was me, to my 20's where I wanted to take on the world and "show them", to this day I wonder who "them was".  Then on to my 30's where I really started to know that change was alive only within myself.  Then again onto my 40's where I realised that I had a great life, my only responsibility was to live it well. 

When I realise that I was strangled with so many things beyond my control which prevented me living well, I realised that money meant nothing and belief meant everything.  I have started getting to closer to God, yes me, that's right you read correctly, although it is my God, and I will not have "him" be defined by anybody other than myself or my soul, I truly can say that I believe in an ongoing faith and the ability to know that you need faith in order to guide you through. 

As I sit here on the eve that I have been told by another power that I have to move my Father into a home, I realise that maybe things have come full circle.  I realise that life is infinite, it is a place and a time that we have here.  Wake up, don't waste it.  It is only ours for a short amount of time.  Use it and use it well. 

You see, my Dad was diagnosed with Parkinson's about the same time as Gracie was diagnosed with cancer (I refuse to give it a capital letter), and my life was a series of "get by's" for a number of years, but I had faith on my side, I just didn't know it.  Faith did however, without me knowing, bring myself and my family the people we needed when we needed them, and because we had those people we were able to thrive, and believe it or not we survived.   Thank you Donna and thank you Angela, from the bottom of our hearts, thank you. 

Two years ago I managed to get my Dad out of a home and into his own home with 24 hour care, thanks to nothing short of some amazing people who cared and some amazing resources that my Dad in his day put together, this happened.  But now as the time runs short there is nothing left to do but adhere to the norm.  All day I have felt like a failure and a hypocrite of our system and my beliefs.  I feel lazy and out of sorts.  "Why can't I continue to make decisions for someone who is not my child but my parent"?  It is not the norm.  However it is becoming the way for so many of us.  They call us the "sandwich generation".  Why do they always have to name such things, I wonder?

Anyway the decision is made, he is going into a home on Monday, yes they make you decide that fast.  So here comes the undoing of such a beautiful system that Angela and I put into place.  Will she ever know how grateful I am to her?  I am not sure as she seems the person that will always see herself as a failure cause it didn't work out.  Through my tears tonight she said to me, "you gave him two years he would have never had", will she ever know how much those words coming from her meant to me?   When you are in a business relationship with someone it is hard sometimes to set the boundaries, but when that someone is such a life line to someone you hold dear, it is a hard line to draw.  I know.

Which brings my rambling to a close.  This is what 2012 has taught me,  don't hold on to yesterday or tomorrow, your life is today.  I love my memories, and realise that I don't like the yucky ones, so although they will exist, as always, and they make me who I am, I have no desire to make new ones, I will only strive to make good ones.  I will not hold onto my yucky past, only what it taught me and only the hope of new beginnings.  I will cherish everyone around me that gives me strength, hope and light, and those that don't I will always cherish you but I hope to meet you again when your hope and light come to your forefront.  If I have let you go, it was because I had to, not anything that you have done, just me, and I just hope to see you again in strength, hope and light...soon.

In memory of all the people that have given me, STRENGTH, HOPE and LOVE..  Please continue to Believe....

Good news for Gracie

Gracie's ultrasound is clear and her chest xray looks to be clear as well.  This is a little unmomentous for us, as we have had so much roller coaster in our lives I find myself waiting for the uphill climb again.   What I do know is that we have managed to go and live when we have gotten news like this in the past, it is almost like a "ready, set...GO" kinda thing.  And live we have and are, we are heading to

Scans, tests and more scans

Gracie's scans were not clean, so to say, but it was not all bad, her lymph nodes keep lighting up on the PET scan, which can be quite concerning, but she has been not feeling well at the time of both of her PET scans, being this latest one and the one prior (when we are sick even with a cold our lymph nodes will enlarge).  So we don't really know what to do with these results.  The consciences has been that we will do nothing, we will not biopsy in other words.  We also believe that maybe the PET scans are not working for us anymore and we will have to rely on another diagnostic tool.  That being said we are waiting to see when we will schedule a CT Scan or ultrasound or both. 

In the meantime, Gracie really hasn't been feeling well so after a long political battle with ACH (Some of the Dr.'s up there feel that we should be transferred out to short term and back to the care of our family Doctor as Gracie is a year post transplant, however her Oncologist does not want to do this yet as we have not had clean scans, so we are often met with a "what are you doing here" attitude from the rest of the Oncology team - it is  frustrating and confusing for us as well as a little humiliating, but we are getting used to navigating the political mine field of our health care system), so finally, thanks to one of our favourite Doc's up there she was seen last Monday only to be diagnosed yet again with pneumonia.  It is crazy whet you get grateful for and I was grateful that I was able to get her seen by someone who cared and that the pneumonia had not advanced as much as it did this time last year so it was only high doses of antibiotics and not another five days on the ICU ward.

She is coming around, but has gone back to taking a nap and the dreaded su-su (soother) is back, much to our chagrin as we had worked so hard to get her to give it up finally.  Probably not a big deal to alot of people reading this, but it is a good feeling when you have something that can be in your control.

It is also with such sadness that we had to say yet another round of good-byes to two amazing kids from our journey, they have definitely earned their wings and I hope they soar high, free from pain and suffering and endless hospital stays.  Ty Sparks and Jacey Uphill you will forever be etched in our hearts and in our minds. 

Its disconcerting that a place I found so comforting and safe has now become so depressing and sad.  ACH represents to me, now, a place of loss and sadness, there is no longer anyone there that I know, staff has changed and most of the children we were close to have passed on, it leaves me with such a heavy heavy heart.

I am sorry for not being more prompt in my posts, I will try to be better.

Take care...

Scans

Tailspin it was.  I was asked once if a brand new diagnosis was more devastating than a relapse and having been through both, I can say they are equal in so many ways but different in the way your heart wrenches.  Maybe if it is a new diagnosis there is so much hope or despair, or fear of the unknown.  But with a relapse I can honestly say, it rips your heart out because you know what lies ahead.  You don't know that with the beginning.

So once you get to the "remission" stage, which I will say with clarity every cancer patient young or old, hates this term, so much so they have phased it out of all medical lingo, you live in limbo.  If I had 5$ for every time some said to me "arent you glad its over?"  I would be a rich woman, what these people don"t undestand, which was stated in my blog of _______________ it is never over, it will never be over.   The only time it is over is when it is truly over and they have gone to Gramma in Heaven.  She wants to visit her Gramma in Heaven she says it repeatedly, maybe she is trying to say something to sus.

Signs of lymphma:

Restlesness;
undecidenness
weakness
nught sweats
high lhl levls

 and  I really dont blame her, so would I, but I am not r
ady yet.  I need to see her first, it is the way it is supposed to be, and in some way I will make sure that is the way.  It is my job to