#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.

 

A New Normal for Fynn

An update from Fynn’s Mom today:

Exactly one year ago today, 12/05/2014, Fynn had his first of 30 radiation treatments to his brain. The first treatment, post tumour resection, to fight Medulloblastoma. In the ensuing year he has endured countless procedures and poisons, countless assaults on his little body, countless insults to his little self.

Today, 12/05/2015, the treatment is called off. Enough. His body has taken all it can.

Although not altogether unexpected, it is still a shock, still a new normal, still something to get used to. I imagine most of our supporters are cheering as you read this. I speak for myself, Sandra, when I write this. I want to be elated that the chemo is over, BUT I just cannot bring myself to be. Actually, as the day has progressed I have felt more shrunken. (Oh please, grammar Gods, forgive me!) For us this is the beginning of another beast, another waiting game, another mental torment. Up till this point, we have been under the care of 3B, the oncology ward. Shortly we will be pushed out into the real world to fend for ourselves. That is terrifying. Only people who have walked this path can appreciate this. Please, lovely friends, don’t take that as criticism, we could not have survived this journey without the immense support we have received. For us there is always going to be the possibility of relapse, of secondary tumours, of late-effects from chemotherapy to worry about, never mind the ongoing physical rehabilitation that our Fynn faces.

His hair will grow back, he will get rosy cheeked, he will put on weight, but he will NEVER be that boy I took to the ED back in 2014, he just will not have the same potential again.

Once again, no need to comment. Once again, thank you for loving us, warts and all. xx

Onwards and upwards. Today he asked and we could not say no to maccers, chicken nuggets. Sadly he seemed to enjoy them!

Fynn Mac

My Friend Fynn

Friendship

So this morning I woke up feeling a bit sad for myself and a bit fed up. My lymph drainage seems to have decided to take an early Christmas break leaving the swollen, spongy tissue feeling rather sore and pretty freaky looking.

The pec muscles on my right side are bunched really tightly and will not move an inch, despite my best massaging efforts. As a result my radiated bionic boob (a fantastic term stolen from a fellow blogger and breast cancer survivor) is once again sitting much higher than the non-radiated bionic boob. Making it extremely difficult to find clothes to mask this freakishness.  So a trip to Gillian will be required this week, I just hope she can see me!

Just to add to all the freakishness, my feet and hands are continually swollen at the moment. My knees, hips and fingers are aching, not sure what’s up with that! And all in all I feel at least 30years older than I am, and pretty fed up!

It probably didn’t help that I also went swimwear shopping last week where my options were somewhat limited by my continued expanding frame and trying to find something that wouldn’t show off the really attractive pocket of lymph running down my right side.

I also ended up visiting my GP for a pap smear, yip the fun just never stops! Not only did I have to have the pap done, but blood had to be taken to check ovarian tumour markers. So even without the tamoxifen, those will have to be closely monitored! *sigh* And even though I’m sure they will all be fine, there is still that annoying voice somewhere in the back of my mind whispering….but what if it’s not?

So yes, this morning I woke up just knowing it was going to be a special shade of a Blue Monday!

Well, that is until I switched on my Blackberry and saw that my very first Facebook update was post about my friend Fynn.

Now I know many would say that I cannot call a person who is less than a 3rd of my age, living thousands of kilometres away and someone whom I have never even met, my friend… Ok so technically speaking that may be true. But Fynn is the kind of person I really would like to call my friend, so that should count for something, right?

My friend Fynn lives on another continent with his mum, dad and little sister. He is 8 years old and earlier this year he was diagnosed with a brain tumour.

Over eight months ago he had an 8 hour surgical procedure to remove enough of the tumour to give him (in the words of his doctor) “a fighting chance”. Unfortunately that same life preserving surgery changed his life drastically and he is having to learn to walk and talk again along with presenting other severe challenges. Fynn has already completed one full round of chemo and is currently on his 2nd. Today he completes his 4th chemo treatment of this cycle with another 5 to go.

My friend Fynn has a truly inspirational family and I read his Mom and Dad’s Facebook posts every week to keep myself updated with his progress. But it’s not just his medical progress which is documented; they also share in such a sincere and heartfelt way the realities of what they, as a family, deal with on a daily basis. The impossible choices, the frustrations the horrors, the tears and the triumphs.

Often just days after chemo his mom will write that he’s determined to go back to school when she would far rather him be resting. He’s a very determined young man, is my friend Fynn.

This morning’s update was that his bloods were high enough to give him chemo despite him not feeling very strong. His dosage has been halved as last week they picked up that he’s suffered hearing damage due to the chemo. Life sure has not been easy for my friend Fynn.

So as I and the rest of his family and friends wait to hear how he is doing after today’s chemo; I urge to you to think of my friend Fynn, and keep him in your hearts. And when like me, you wake on a Monday feeling fed up with how unfair life is. Whether you are worried about bills piling up, how you are going to afford to pay your kids tuition, what to cook for dinner, how you are ever going to get your boobs level or just grumpy with your boss/ wife/ husband/ mother/ dog/ cat – take a few minutes and think about my friend Fynn and his mum, dad and little sister. And instead of listing all the wrongs in your life, hug those PEOPLE you love and who you are fortunate enough to share your life with – they are really the only “things” that should matter – the rest…….the rest is just stuff.

OKAY: you don’t HAVE to hug your boss 🙂

So today, for my friend Fynn, I am not going to try and find quotes to express how I feel – I am going to share a song…

This is for you Fynn, my hero and my friend….

http://greatergood.me/1CvWZb1