To Kayla; now that you're One

This is not going to be the usual wordsmithed blog that you have become accustom to from this site, the reason for this is that it’s Lou’s DH writing this. It took me a while to decide to do this and even longer to work out the passwords, unfortunately the news is very bad, We lost Lou in August this year. You were all a great support for Lou and a large and enjoyable part of her (our) life. I thought it only fair to let you know what happened, Lou was taken off the drug trial due to the rapid growth of existing tumors as well as the detection of others, we then went on to chemotherapy which had no effect and told she had 3 months to live, about 9 days later she passed.

We ended up having a great birthday party for Kayla early in August complete with jumping castles and all the bells and whistles, we fluked it for great weather and Lou was having a good day and was up and about , we really couldn’t have asked for it to be better, It was made all the more unreal that the people that were having a great time with us on Sunday, 13 days later, were at her funeral.

Lou rang me on the Wednesday while I was at work saying that the regular blood results had got back and that she was having trouble getting on top of the pain, this wasn’t anything we hadn’t experienced before except that the doctor had requested that she get an ambulance to the local hospital to treat the pain more effectively, I got home to find Lou a bit concerned but in good spirits, with Lou’s parents looking after Kayla, I followed the ambulance to the hospital, on arrival at the hospital we discussed with the doctors that she had radiation treatment booked for Friday in Melbourne and at that time the hospital staff booked transport to take her to Melbourne via ambulance for Friday morning, again Lou was great once the pain had been treated, we both thought that this was precautionary measure after advise from the resident doctor and remembering that only a few days ago the Melbourne professor had given us 3 months. It was not until late Thursday when doctors advised us that we should cancel our radiation appointment as Lou had deteriorated over night that the alarm bells started going, again at no time were we given any indication from staff just how serious her condition had become, at this point I contacted family and friends to let them know that it wasn’t going to be a two night stay as originally thought. Lou said as a fleeting comment “I hope I am going home” I remember saying don’t even think that. But then the cruncher was on Friday while I was in the middle of swapping with Lou’s parents looking after Kayla so Lou’s parents could be with her for a few hours in the afternoon and Lou was by herself for not longer than half an hour the doctor came in and told her that she wouldn’t be going home. Lou was fairly heavily medicated and very distressed and rang me. The next hour was a bit of a blur as I raced to Lou’s side and tried to make sense of the situation with grief, anger and sympathy exploding inside me, my only concern was Lou. Family and friends called in over the next 24 hours and Lou would wave in and out of conciseness but was coherent enough to chat to everyone, her two best friends stayed the night on Friday, It was Saturday night after many visitors with Lou’s waking times becoming further apart, it was just Lou and I by ourselves just holding hands, we did this a lot, it might sound corny but we used to lie in bed and hold hands and talk for hours laugh and cry, this night it was just me doing the talking and crying as I watched her breaths become shallower and further apart until nothing.

I can tell you how hard its been for me juggling my 2 older kids at home my work with 15 staff and my little 13 month old girl but it just doesn’t compare to how hard it would have been for my beautiful wife to leave her perfect daughter behind.

I love telling everyone about Lou’s Blog and the amount of comments she gets, Please leave a comment I would love to print them out and show our daughter one day. Thanks again

Below is a poem that was written by my 15 year old daughter that was read out at the service

I was sitting in my room, looking at your picture.
Wondering why you couldn't make it to my future.
Uncontrollable tears stream down my face,
While my heart beat starts to race.
Asking God why he took you from my life,
It was more painful than stabbing me in the heart with a knife.
I still needed you here
you were the one to make everything so clear.
You are a part of me and I am apart of you
when you died a part of me died too.
I never knew how hard it was to lose someone you love
until the day you went to heaven above.
Even though I can't see,
I know you’re up there watching over me.

You were the best friend I ever had

And you were there for me through the good times and the bad.

I love and miss you more than you knew

You taught me so much, I want to thank you.

I miss hearing your voice and seeing your smile

Just being with you and hanging out a while.

A thousand times we needed you.

A thousand times we cried.

If love alone could have saved you,

You never would have died.

A heart of gold stopped beating,

Two twinkling eyes closed to rest.

God broke our hearts to prove he only took the best.

I never got to tell you how much you meant to me,

Or that you were the best mum, better than any could be.

I love you Lou. I Always Will.

Reconnecting

I have been spending a lot of time in bed lately. And hospital. My latest side effect is anaemia. I have been having blood transfusions every couple of weeks. One week in bed... one good week... another week in bed... Fun and games.... Shits and giggles....

DH has been trying to talk me into putting a tv in the bedroom, but I have resisted. He decided that he misses reading my blog so went to buy me an i-pad - despite my objections to the cost. In the end he decided it didn't have enough power and bought me a laptop at 3 x the price. There is a lot of Tim the Toolman in my husband.

Despite the anaemia, the Oncologist has been happy with my response to the trial drug. The first lot of CT and MRI scans in June showed all tumours had shrunk in size to varying degrees. Results for the 2nd lot of scans are due tomorrow and no-one is quite so optimistic. The lymph node tumours under my arm have visibly increased in size over the past couple of weeks. I'm not sure if they will keep me on this trial if that is the case. I am expecting not. We are meeting the Oncologist at 10am tomorrow. My anxiety levels are through the roof and keep leaking out my eyeballs.

On a brighter note, my baby girl is almost a year old! She is the most gorgeous thing and I just adore her. She is still doing the commando tummy crawl but has started to pull herself up and weight bear on her legs just this week. She refuses to talk but has some hilarious facial expressions and waves furiously whenever anyone enters or leaves the room. I must write a big post with photo's for you. I must also organise her birthday party. Bloody hell I'm hopeless - can't make a decision to save my life at the moment.

Thanks for stopping by and thinking of me, I will try to catch up on my reading over the weekend.

Off and running.....

I cannot believe it has been so long since I last posted. Sorry. Morphine is not my friend.

I am on the trial!
I am on the trial drug!

Officially started last Thursday. Friday I was dancing almost totally pain free. Absolutely ecstatic. Saturday I was in hell. Lower than a snake's belly. It seems that my tender little stomach is taking some extra time to get used to the drug. I think I have experienced the full gamut of listed side effects. This is probably not good for the trial stats and every second day they talk of taking me off the medication, but I am being uncharacteristically assertive. I can do this. My stomach will rise to this occasion (hopefully not literally - again).

This whole trial process has been a roller coaster. The baseline studies have been scary. Latest scans show 'spots' on my lungs and a couple of 'specks' on my brain.

Start

Yay I have a mutant fast growing cancer gene!!

Its not much I know but its a start at least. This means that I am eligible for the drug trial. I have an appointment next Friday to have all the testing done again at the cancer hospital - I imagine this will be the baseline info for the trial. It will be interesting to see how much Terry The Tumour has grown since Feb.

As you can tell from my last post - I have good days and not-so-good days. The pain meds make me feel dizzy and nauseous and don't seem to block much of the pain, but the next step up are morphine based meds which would mean I couldn't look after Kayla. I decided that if I was only going to be here for a short time then I wanted to 'be here' as much as possible. Probably not so good for DH who has to do so much more around the house, but hopefully not for much longer.

A lovely reader sent me a link to a New York Times article about the drug I hope to trial and they talked about almost instant reductions in tumour size, so hopefully I can get some of my life back soon. Another lovely reader emailed me some info on other drugs in the works so I'm planning on sticking around long enough to try all these new things.

Thanks to everyone still thinking of me and praying for me. I really do appreciate it.

Whinge

Well its been a month and finally my pathology has made it from one lab in Melbourne to another lab in Melbourne. Woo-friggin-Hoo!

I can't believe the delay. I still don't know if I am eligible for the trial. So needless to say I have not had any treatment yet either. My tumour feels like its getting bigger and the pain is relentless.

I am having a whinge I know but I am so over this waiting thing....

Patience

I've never considered myself to be a patient person. I'm much more of an instant gratification type of gal. Yet the entire past decade of my life seems to be revolving around waiting. Waiting for medical procedures to start - to finish - to be successful.

I have signed up for a drug trial. The drug company is in the US so my pathology was sent over last week and we are waiting to find if I am eligible. As I understand it the drug targets a certain mutant gene found in fast growing melanoma tumours and (they hope) turns the gene off, so the tumours stop growing, or at least stop growing so fast. Previous trials have shown that some tumours have reduced in size by around 30%. A lovely old Italian man sitting next to DH at the cancer hospital told us that he participated in the last trial. He had been given 3 months to live but now his tumour is 75% smaller than when he started.

Obviously, I really want to get on this trial.

The first hurdle is eligibility. It's a strange new world when I am hoping that my cancer contains a mutant gene that makes it grow faster! The oncologist is 80% sure that it will.

The second hurdle is that the trial is randomised. This means that a computer program on a computer somewhere in the States randomly chooses who gets to try the new drug and who gets the standard chemo treatment. I have been placed on a priority list to start treatment asap, but there is no compassionate bias.

I am trying to think positively. The oncologist thinks another trial will start later in the year if I don't get the new drug on this one. And anyway, maybe the chemo will be just as effective, and there are other new drugs that are also coming on to the market - such as immune system boosters - that are having good results too.

My fingers are crossed and many prayers are being sent off into the ether.

Overwhelmed

DH and I are overwhelmed my your love and support. DH has tried many times but not been able to read all your comments, so moved by the kindness of strangers.

A huge thank you to my gorgeous bloggy mates Eden, Stacie and Mrs Mask for recruiting extra prayers. We are going to need all the help we can get for this new fight.

My uncle visited today. His 40yo stepson was diagnosed late last year with Stage 4 cancer of the rectum with spots on the liver as well. He's been having chemo for about a month now and the main tumor has reduced from 75mm (same size as my lymph node tumor) to less than 7mm and the liver spots have dramatically reduced as well.

We have been crying every day but we have hope. Hope has always and will always be with us.

I am just anxious to start treatment and get the fight on.