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Keepsakes


Keepsakes


Some of us get to say goodbye and others don’t. We were able to have some precious time with cookie before he passed and although it happened so fast I didn’t think we’d be able to get all the precious keepsakes. I know a lot of you have asked and these were the things I came across or we were very kindly gifted.
I think that any of these would make the perfect gift for any occasion and I will make sure that I update these things as time goes on for the kids and I.  

Linden Cook 

Before cookie was placed into palliative care we had the amazing Linden Cook make contact about wanting to gift us with some finger print jewellery. I have to admit I did put this off for a week or so and then when cookie was moved into palliative care I took it in on the first day with the kids and we made it work.

These amazing pieces arrived finished just before Christmas and I am absolutely so grateful that the kids will have these for all the years to come. The boys rings are the same size as Cookies ring finger before he passed.

https://lindencookdesign.com

My Little Keepsake 

When we were pregnant with Ava we went to the pbcexpo where we came across this beautiful little stall that captured the kids hand and footprints on inkless special paper. Cookie was absolutely so drawn to it and we brought an inkless print kit to pop in our hospital bag.

All 3 kids had frames made from their newborn hand and foot prints and when Vicki contacted me saying that she could make a family one of our hands I cried.

The kit only just arrived in time and the funeral home was able to do his hand prints for us. So so soooo grateful. 

I now stock the inkless print kits in the shop. They have been one of the most amazing things for not just end of life but capturing your baby’s prints as a newborn. 

My Teddy 

Now this was something we’d ordered before Cookie passed. He helped choose the kids teddys and I would of loved for him to see them.

They arrived the day of his funeral and the kids have slept with them every night since. A few days ago I added the voice recording boxes which I am so so grateful that cookie wanted to record his voice saying ‘Daddy loves you Ava/Chaz/Reed’
Perlpex 
I absolutely love how versatile this keepsake is  you can change and add whatever you like whenever you like. It’s the perfect keepsake.
 Namely Co  
Cookie used his personalised blanket from the minute he got it. It stayed with him until after he passed away. Making the decision on whether to let it go with him or keep it. I decided to keep it for the kids. It’s now lost his smell and that breaks my heart but I’m so grateful to have all the memories that come with this beautiful blanket. 

Wish You Were Here Dolls 
Another amazing keepsake for the kids. Something they take to bed with them every night. Great not just for loved ones that have died but loved ones working away, family that live away ect… 

 

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Glioblastoma - Go Grey in May Day 25

Glioblastoma (GBM)
A malignant tumour affecting the brain or spine.
This type of tumour grows and spreads rapidly, often creating pressure.
Symptoms 
Nausea or vomiting. Abnormality walking or weakness of one side of the body. Inability to speak or understand language or mental confusion  Double vision or visual impairment  Difficulty speaking, headache, personality change, seizures, sleepiness, or swelling. 

Causes 
The causes of glioblastoma are largely unknown. However, it often occurs in people with rare genetic conditions - Turcot syndrome, neurofibromatosis type 1 and Li Fraumeni syndrome - due to mutations in a specific gene that causes many of the characteristic features of glioblastoma.

There are only 3 ways to treat GBM 
Surgical removal - if it is located in a part of the brain that can be operated. Comes with risks including deficits or rapidly growing back. 

Chemotherapy - to stunt the growth. This will not ‘shrink’ the tumour. 

Radiotherapy - used to target the tumour and part of the brain around the tumour hoping to reduce the size. 

There is NO CURE. Typical prognosis is 6-15 months. 

Sources
 Google
https://moffitt.org/cancers/glioblastoma/diagnosis/causes/
http://knowledge.rarecancers.org.au/knowledgebase/cancer-types/79/brain-tumour-overview
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Alan - Go Grey in May Day 19

Alan - Go Grey in May Day 19
Each day in conjunction with Go Grey for May, I’m sharing incredible stories of our community of Brain Cancer Warriors. Buy a T shirt, Beanie or wear an old grey t shirt to support the movement around Brain Cancer. 

My late husbands name is Alan Depp. He was 46 when he passed. He passed away 2/17/15. His tumors were in the right frontal lobe. Alan was diagnosed with GBM on January 15, 2014. He fought for 13 months before GMB took his life. We celebrated our 8th wedding anniversary 5 weeks before he passed. We had two sons between the two of us. Tyler is Alan's son and Ryan is mine but Alan loved both boys more than life. Alan had a "larger than life" personality. He was funny, witty, compassionate, hard working and his family was his life. He first started having problems on December 7, 2013. I will never forget that day. He was on his way home from helping a friend with his racebike. He called me and told me he had a migraine and he thought I might need to come get him. He made it home but the migraine lasted for 4.5 weeks when he became very delirious, had spent the majority of the previous month in bed and could not function at all. I took him to the ER on January 9th, 2015 and shortly after midnight on the 10th we were told nonchalantly that he had a "mass on his brain". We were led to believe that he would have surgery and all would be good. Well... little did we know 5 days later we would be told that he had terminal brain cancer. Our lives were never the same. Many surgeries later along with meningitis, c-diff, blood clots in his lungs, infection in his brain and the bone flap he was sent home on hospice. The last 6 weeks of his life was spent at home. about 3 weeks of those 6 he was as cognitive as he could be after having multiple brain surgeries. The last 3 weeks were just a waiting game. The beginning of week 5 I was told by our hospice nurse that I needed to be home. I took care of him while he drifted away. The final day of his life is one I will never forget. I stayed by his side all day long. We had some family and staff from our church in and out of our house throughout the day. He waited until the family that was here was all busy and it was just he and I. I was talking to him. I was convined he could hear me. I told him that it was finally just the two of us. That that was how we started and we were finally alone once again. I told him we would be ok and that he did not have to hang on any longer. I told him I loved him and as I finished saying the words he took his last breath. GBM forever changed our lives. It taught me so very much. Not just about cancer but about taking things for granted. Tomorrow is Alan's birthday. I find it a little ironic that I received your message today. I still celebrate our anniversary, his birthday and his passing day. I have started making sure that my "dash" matters. RIP Alan Depp 05/13/1967-02/17/2015
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Life After Loss


Life after loss - GBM

 

It’s a shit place, a really shit place. Somewhere I don’t wish anyone to be. Somewhere I never thought I’d be at 25. Trying to navigate a new life solo parenting while grieving and missing my soulmate  more then ever.

 

It goes as the saying ‘when you died a part of me died too’

 

I’ll never be the same person. The life lessons, the pain, the hurt, the loneliness, everything has changed me. Cookie made me a better person. He taught me so much and together I felt like we were a powerhouse. He always used to say to me we are like a train powering along and we can’t fall off these tracks.

 

Well I’ve fallen off the tracks - NO actually I’ve exploded into a billion pieces. I thought I’d do grief differently or maybe I thought this would all feel different.

 

The days following Cookies passing I felt so much relief for him - even the night he passed. I knelt down beside his bed squeezing his cold hand in hopes he’d  squeeze it back like he normally would. It not only broke me but it also made me feel like he was at peace. That he was ok.

 

After saying my final goodbyes that night  - I flicked the hospital room light off saying ‘goodnight babe I love you and I’ll see you soon’. That walk down the hallway knowing that I’d never ever get to see that beautiful smile again, his sweet I love yous and in fact not only 2 weeks prior he walked himself in here and there I was walking out of the hospital alone without him to never return home again.

 

I got home around 9-9.30pm that night. The kids all sound asleep in bed and all I wanted to do was just wake them. But I didn’t. I went to bed and layed awake, with the light on, and a stream of what felt like never ending tears. I think I had a wink of sleep but at 6am I heard our little mates feet hit the floor and he came straight into me. This part just broke my heart. Telling the kids he was gone and he wasn’t coming back. Something they really struggled to understand and I mean so do I.

 

Since then we’ve got through Cookies send off,   ticking a few things off his list, his best mates 30th, Christmas, New Year and now Chazzys birthday.

 

The lead up is HARD the day and in the moment I feel like I do semi OK but then afterwards I crash. I cry for hours/days/sometimes it feels like a whole week.

 

The daily triggers break me, the less washing, one less plate to dish up, no more nightly showers together, the cold empty bed, the work he did on our house, the clothes hanging in the wardrobe, his shoes in the shoebox, his favourite foods left in the cupboard.. the list goes on.

 

The weeks and now months following Chazzy forgets and if we drive past the local hospital he still goes to say can we say daddy before remembering his gone. And I can see the kids are starting to really feel it now. Ava will come up to me and say I miss daddy and mummy I’m allowed to cry just like you. I mean bless her but it tears my heart out how a 4.5 year old even has to deal with this stuff.

 

I remember the first time I took the kids to the cemetery driving in Ava innocently pipes up in the back seat and says mummy I’ve never been here before this place is so beautiful.

I don’t understand at this time in our lives we have to be so familiar in visiting the cemetery to see our missing piece. It bottom line fuking sucks.

 

And I mean other then this shit downs of wanting to join Cookie and relieve myself from this pain, I try to find my purpose in every day. And as I said above I really wouldn’t wish this upon anyone. I’m hoping one day there’s a cure so that more families don’t have to go through this. I will continue to do what I’m doing because

 

Someone I love needed a cure.

 

Lots of love - Chloe xo 

 

 

 

 

 

 

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Symptoms & Signs before Cookie found out

Chazzy & Daddy catching zzzz

This is something that will be and was extremely hard to write but I know that it will be the key to potentially preventing someone from being in the position Cookie was faced with so quick and soon.

A lot of the recent questions that were coming through was Cookies Signs and Symptoms. I guess most of them we always brushed off as him being an extremely motivated young family man, dad and business man... who never sat still was ALWAYS doing something. 

So I guess that leads us to the week he started to have his headaches.. when I look back he had been taking Panadol for headaches on and off for months but only occasional and not anything that set off alarm bells. 

He came home from work a few nights the 3rd week of July mentioning how he'd get this really extreme amount of pain/aching in his head that he described as stopping him in his tracks, then after a few minutes they would disappear.

One of the first things I said to him was I think maybe you're working to hard and need to have a little rest - he was only 6 months into running his own Small Construction business which was booming and keeping him really busy. The second thing I said was maybe you're not drinking enough water like when do we ever make sure we are. And his comment back was yeah babe you're probably right.

In the months leading up to finding the mass on his brain, he'd been having troubles with his eyes, extremely fatigued, finding he was a lot slower with work and he had quiet a loss in appetite.

- Eye problems including swelling

- Fatigued he'd have 12 hours sleep and still be so tired 

- Slower with his work  

- Food intake was much much less

Other things included

- Mucking up some measurements with work on more then one occasion and if you knew Cookie you'd know he never would do this

- Small Behavioral/mood changes (example wanting something one minute then changing to the complete opposite minutes later) once again not something he ever did 

I also strongly believe that Cookie had a high pain tolerance and also I think he would of seen in himself other things but he was always the one to brush things off as nothing. Through all his Neurological examinations they did even up until the one that he did in hospital a few weeks before he passed they were all textbook and perfect bar a few hand ones on the left side. 

The day that he just couldn't take the pain anymore is etched in my mind so well... it was a Saturday - the 18th of July. He'd gone and done a small job then had a bit of time to head to another job about 15 minutes drive from our house. When he got there he called me and said I have to turn around and come home. I've jumped out of the car and my head just feels like its going to explode I'm in so much pain. So he drove home and I made him call the doctors to which they did a Telehealth appointment (thanks C19) and told him to get a test done because we had - had a break out in our small town. 

From there the pain continued to get worse and I think the hardest part was that NOTHING he was taking was even taking the edge off... I think on day 5(of 8) of waiting for his test results for (c19) to come back he must of googled something to relieve pressure because he walked out with an ice pack on his head and we had a little joke like we always did.

Through the week I pushed him to call the doctors making them aware that no over the counter meds were helping take the pain away and they said nothing to much other then we had to wait for his results to come back before they could perform anymore tests in which they had written up for him to have a 

- CT Scan

- Full Bloods

Once he had a negative C19 test

(We were actually starting to think that maybe it actually was C19 and he was just getting a full force of the headache symptoms)

You know how I mentioned that he was NEVER sitting still... this was the first week id ever seen him actually not have the energy to do many things. Other then sleep, watch movies he just rested and I honestly thought that would make him better :(

The morning of Tuesday 28th of July I can remember us having a conversation saying todays the day surely after 8 days waiting you'll, have your results.

And sure enough he got a text around midday with a  NEGATIVE result.

Rang up and booked straight into have the CT & Bloods.

Around 2pm he went up and got them both done and by 3-3.30pm his phone was ringing.

I was actually sitting in the study/sewing room and I remember texting my mum saying this can't be good. I just had this gut feeling by the tone in Cookies voice.

He got off the phone and walked into the study and said the doctors have said I have a Large Mass on my brain. I was in shock I actually didn't believe him for a second before hugging him and crying my eyes out. 

Reasons to why his headaches come and then went quickly at the start, was mainly because of the fluid build up in the brain. The ventricles would open allowing some fluid to pass through but because his tumour was large it was blocking the flood meaning that the build up of fluid was putting more and more pressure over time as less and less fluid passed through.  

Same reasoning with his eyes particularly his eyelids would be very swollen especially in the morning when he first woke up once again fluid build up and this never really went away even with his shunts. It was always bad when he first woke up and would improve over the day. 

Im always always ALWAYS happy to chat, email, message on Instagram about our story and any questions you may have.

If I've taken anything from this myself is never ignore something that you know within yourself might feel off. Not everything would or could be as extreme as this but at least if you go to your GP and have a chat they can point you in the right direction and if in doubt ask and push for more opinions.

We were extremely happy with how our Local GP and Medical Clinic dealt with Cookies case they on the second phone call had organised the scans and bloods.

 

Someone I love needed a cure 

 

Lots of love Chloe x 

 

 

** Its also extremely important to know that every single case is different and I'm in noway a medical professional or have any qualifications in this field. This is just Cookies journey and what he was faced with in the months/days leading up to find his mass. Please consult your GP if you have any concerns of your own. 

 

Ava, Chaz & Daddy on one of our many walks

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