#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

Fantastic Mr Fynn

The following story is not my own, it is however a story that I feel strongly compelled to share.  And the reasons are many: to raise awareness of Childhood cancers and in this specific case Childhood brain cancer – because I know this is really important to the person who wrote the story.  It is about courage and strength – real courage and strength – the kind parents of children with cancer need on a daily basis, the kind that most of us will never even comprehend.  It’s about pain and horror and impossible choices; and it’s about a little boy.  A little boy who continues to amaze me with his phenominal spirit and determination.  The photos are shocking, but they speak volumes about what this little boy has had to endure and overcome in one short year.  It’s also about hope and perspective and keeping this incredible family in our thoughts and prayers, because their journey is not yet over.

“A year ago today our lives changed irrevocably.

We knew something was up with Fynn, and we received the actual diagnosis rather “matter of factly”. It saddens me that the medical fraternity took so long to agree with us. I know things now I wish I did not. One thing I do know all too well now, is that awareness of childhood cancer is seriously lacking, and yet it is the biggest killer of children in Australia, and brain cancer is responsible for a huge portion of these deaths. Maybe if there was better information sharing, children like our Fynn would have had a quicker diagnosis, less damage from tumour growth and the life-preserving operations to remove them, and a bigger chance at survival without the damage that is caused by the treatments. (Please note I used the word preserving and not saving, as the term survival is relative. A preserved peach is quite different to a fresh one.) In some cases these cures actually kill.

The past 2 weeks Fynn has had an infection which could have killed him, he was critically ill. He got the infection from a bacteria that is present in all of our mouths and is normally helpful to healthy people. To immune suppressed individuals it can kill. Why is Fynn immune suppressed? Well the chemotherapy drugs do that. The hope is that these drugs will kill the cancer in his brain. The truth of that is that the doctors do not even know if they actually work, as they don’t actually know if these drugs cross the blood-brain barrier. (You can google that one!) They are just giving Fynn these particular drugs as this is what has always been done and sometimes it works. More funding is required to do more research so that childhood cancer survival stories can be as common as the breast or prostate cancer ones. Fynn, and other childhood cancer victims deserve to live a life that is not dogged with “late effects”, the hangover from chemotherapy. These include hearing damage and the threat of secondary cancers, but there are many more the list is long and depressing.

So, I hear you asking, why did we agree to let Fynn have this treatment? Why not change our diet, our lifestyle, or seek alternative therapies? We know more about all of the alternatives than you will know. We also know more about the mainstream treatment than we should. We did not blindly accept the sugar coated advice of the doctors. Brad trawled medical research publications. We were armed. We met with these doctors, more than once and we argued for Fynn’s life. I think they were impressed with the level of knowledge we had acquired, and they engaged with us on a very honest and respectful level. At the end of the day we were not forced to have Fynn endure this maintenance chemo, the surgery and radiation were not negotiable, but this maintenance chemo was, we found out. So why did we do it?

Well most of the alternatives are not legally available to us, and some of them are downright kooky. And, at the end of all the debate, Fynn has the right to life and we have the responsibility allow him to fight. The decision had to be one we, Brad and I, could live with should Fynn die. So we agreed to go along with it in good faith. With the hope that it will pay off and that Fynn can have a relatively normal life. Not the life we had planned for him, but life none the less. And should he survive, our hope for him is that he can claw back some of his childhood, some of the innocence and find a normal place in this crazy world.

I so wish I could rewind and hear the scooters clattering, the ring of the bicycle bell, I wish I was grumping at Fynn because he has banged his skateboard up against the bedroom wall repeatedly and damaged the paint. I wish Fynn could run at his Faction Carnival next week. I wish.

In the past 365 days Fynn has endured so much and we have had to watch him suffer and pretend we are happy about it.
Numerous CT scans.
Numerous MRI scans.
6 surgeries. X2 to insert and replace a drain to release the pressure on his brain. Tumour removal – this lasted 8 and a half hours, the longest day of our lives. A permanent shunt insertion. Lumbar Punctures. Insertion of an infusoport for chemotherapy.
A subdural haematoma, which is a bleed on his brain, which he got when the clamp that secured his head during surgery failed and slammed against his skull.
He has acquired a brain injury called Cerebellar Mutism. This left him unable to even blink or swallow at first. (A baby is born with a swallow reflex). He has had to relearn how to do EVERYTHING. He may never be able to walk/run normally again. He may never be able to speak normally again.
Radiation to his brain. 6 weeks of daily radiation to his brain. Some of which was done under daily general anaesthetic.
All up he has had 29 general anaesthetics – 29!

Countless drugs, antibiotics, antifungals, pain killers, serious ones, poisonous chemotherapy. FYI the one chemo Fynn gets, to date he has had 22 doses of this beaut called Vincristine, actually has this wording on the bag. “This drug is for IV administration only. Any other method is fatal.” I shudder every single time I see that.

He has had reactions to some of these drugs.
3 blood transfusions and 3 platelet transfusions.
Countless finger pricks and needles. He has a huge needle phobia now.
Countless hours of physio therapy, speech therapy and occupational therapy.
Endless hours trawling hospital corridors.

The emotional or psychological toll this has taken on Fynn is unfathomable. We have the responsibility to give him coping tools to sustain a positive outlook on life. We are paying for private counselling for him to give the assistance we are unable to.
I am certain there is a lot I am forgetting or have just blanked out too.

Here are some random thoughts…
1. Childhood cancer is not glamorous, not that I ever thought it was, it is hideous.
2. We are stronger than we believe, because we do not have a choice.
3. We did not do anything to make this happen, we just won the crappest lottery on the planet. I did not feed my children exclusively on sugar and GM modified foods, and I personally don’t believe God chose us for this journey because we are strong.
4. I have a massive and dark sense of humour. I think it has helped me survive, but some things are just not funny. My bullshit tolerance is about 0%, give or take!
5. If you feel the need to help me out just do something. Please don’t ask me what you can do. Unless you have that magic wand to change all of this, I don’t know what you can do. You can spread the word and raise awareness about childhood cancer.
6. Even though it seems like I share a lot, there is a lot I don’t share. It is too hard to make people who are not part of this particularly horrid club understand, and often I just don’t want to talk about it.

If you are still reading – well done you for keeping at it! Thanks for supporting our family over this last year xx”

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