#hopeandlove

So last week there was some not so great news for my friend Fynn.

I have not posted much about Fynn for a while because in the same way I battle to talk about being a survivor, I honestly felt that I didn’t want to jinx anything for this incredible young man.  I have closely read his mom’s posts and observed photos of a family cautiously navigating their new life post treatment. It has been heart warming to “see” Fynn blossom under their love and with his unstoppable determination.

But now my friend Fynn and his family need all the strength, love, prayers and healing thoughts sent their way as they embark on another scary chapter in their lives

This is the update from his mom.  Please read it and then keep them all in your hearts.

20 July 2017

And just like that everything changes….again. I thought I would follow Brad Abbott‘s post from this morning up with something a bit softer.

Facts first. Fynn has a relapse tumour, 3×3 cm growing in the original tumour cavity. It is right at the back of his brain, far away from the REALLY important bits, like the brain stem. It is well defined, and looks to be easily removable, with low risk. Well, you know, when the brain is involved, as low risk as can be! Fynn is clinically well and has no symptoms from this tumour. It was found 2 weeks ago on a routine scan, his first 6 month one. To say it took us all by surprise is not a lie. I include the oncologist in this, he was shocked and lost for words. Typically Medulloblastoma relapses in the first 24 months, give or take, post diagnosis. For it to relapse at 4+ years post is unusual. Statistics don’t matter, though,and right now we have no choice but to board the bus to the circus with some really scary clowns, yep those clown doctors included, and buckle up for the ride.

First step is surgery. Docs believe they can remove the complete tumour. Next step – testing for occult cells in CSF, the fluid in the brain and spinal canal. There is no obvious spread seen on the scan, but those sucker cells like to fly incognito. Then we make plans from there. Relapse medullo always comes with a terminal tag, but this is not inevitable. We have a situation that needs to be dealt with now, and we have to make some decisions about further chemo and radiation, or other, and Fynn still has a lot of time here to cause chaos. Any further treatment decisions are not on the table right now.

On Monday we will go up to Starship, the NZ Medical Mothership of all things kid related. We have the surgery. We were relieved to hear they have set aside about 3 hours for this, just felt better to hear than about 9 hours, which extended into more. Expected stay in hospital 3-5 days, then next steps. So that is clinical facts out the way. Now life facts.

We found out 2 weeks ago, but elected not to tell Fynn and Kady. This seems so very unfair. Just as Fynn was starting to fit in and find his place in the world again, make some friends, have genuine fun, and be truly happy again…THIS. So we made the call to have some fun. The pics are a teeny snapshot of that. I took a week off from work and we packed it in, luckily school holidays coincided. Comments on photos. I have been back at work this week, and it has been good for me. When I am busy my mind cannot go to dark places. We have raged and cried, cried and raged, catastrophised, planned, drunk a lot of coffee, and now we choose HOPE.

We choose to face death head on and dare to defy it. We have discussed this openly with Fynn and Kady. The reality is that death comes for us all. In this situation we get a heads up, and NO, it is not as we planned, and who knows how it turns out, but we get a gift, a wake up, a call to make the most of it. The good, the bad, the plain rotten, the beautiful…you get the idea. Until this moment I have not truly known how much I have changed and grown over the last 4 years. Strangely, I appreciate the change. Hell yes, I would not have chosen this path, but, it has been given to us and we have no choice but to own it, and to have no regrets. For the first time I get to truly own the tag, Mumma Bear, that is bandied about a lot on kid cancer wards. Up until now I did not really get that. Yes, we have had time to process this news. No, it is not news we wanted.

Fact, we have got this, whatever it is. Today I have read countless messages and comments and emails from all our dear family, whanau, friends, communities, etc from around the world. I feel so loved and supported. In know a lot of you may be confused by this post. Maybe you expect me to be more sad, or down. I will remind you of my deep and dark humour on which I rely for carry me through my days.

Right now, we are choosing HOPE and LOVE. We will love while we can and make choices and plans with hope as our star.

 

Happy Birthday Pete

Today is my husband’s birthday…

Is it truly possible to love someone more every day? I hadn’t thought so.  Not meaning you love them any less, just where you reach a pretty “stable” and comfortable level!

But this past month has shown me that you can totally fall in love with someone again in the most chaotic and frightening circumstances.

I have seen such a different side to my gentle, sensitive, capable husband. I have witnessed such bravery, such strength of character, such compassion, selflessness, patience and fierce protectiveness.

He has watched dressing changes when I couldn’t even look at the wounds.  He has smiled, encouraged and positively glowed when he told me how well it was all healing. I have searched his face for any sign of revulsion, pity, horror and seen only gentle acceptance.

He has shaved my legs, washed me from head to toe, washed my hair and even straightened it!  He has cleaned wounds and help me have my first shower.  He has done so all with confidence, kindness, gentleness and with a sense of humour – even when I’ve known he was as scared as I was.

Today he showed up again, on his 33rd birthday, and held my hand in the Oncologist’s room when they told us that our journey was far from over

How can I not be brave and not have the strength I need for the next 6 months, the next year or ten, when he has had enough for us both this past month?

How can I doubt our future can be anything but remarkable?

“Grow old along with me, the best is yet to come”. Robert Browning

“Love is Friendship that has caught fire.  It is quiet understanding, mutual confidence,  sharing and forgiving.  It is loyalty through good and bad times.  It settles for less than perfection and makes allowances for human weakness.  Ann Landers