Being proactive

I kind of assumed that if something like cancer happened to us I would be an awesome researcher and would find all sorts of alternative treatments and be really active in fighting it. But from the very beginning I wasn't able to google or look up anything to do with Tahu's cancer. It was too incredibly bad. And on paper it absolutely is but Tahu is a unique case, he's not the normal person to get this cancer and so when I look up stuff about this cancer it looks terrible but it isn't Tahu. So we decided quite early on to go with the traditional treatment for at least this round. To give it a go and see how it went and not doing any crazy diets or pills or anything. And we have found our medical team so amazing and the treatment has gone well (as far as we know) and so we are happy with this decision. 

There is one thing we did though and that was be "proactive". We use that word a lot and it feels great to not just take the treatment and hope for the best but to not get too hung up in trying everything out there right away. So the way we are being proactive is in 3 parts. 

1. We had a physio recommended to us who works with those undergoing cancer treatment. It's at Physio NZ and is called Pink and Steel. Pink is for women, Steel is for men. We were able to get some funding for Tahu's first 3 treatments and then our insurance covers some of the next few and then we will just cover it ourselves as it has been so good. It focuses on keeping your fitness, mindfulness, managing your weight and other things that are really effected when you're dealing with cancer, especially when you're young. For example, they taught him exercises he can do in bed if he's too sick to get up (that seemed genius to me!). They get him biking and doing steps and they've taught him pilates. The pilates he does most days at home and he notices a big difference in how he feels when he does it. 

So the first thing we did was get him into physio specifically for his situation to keep him active physically and mentally. 

2. Within a few weeks Tahu, for very obvious reasons, started to struggle mentally. He had a panic attack and we handled it ok but I called and had him referred for support that same morning. We had an amazing lady come out to see us the next week who is a psychologist (a social worker came too and she was amazing too). They stayed for 2 hours and talked with us and immediately Tahu started seeing the psychologist once a week. Tahu is really good at talking with me and others but it helps so much to talk to a professional who knows what they're talking about and who isn't emotionally connected to him in some way. She's amazing at what she does, even if he cries the whole session she still makes sure it ends with him leaving feeling great and ready for the next week. 

I have also started seeing her colleague and while I've only had one session so far it was incredibly helpful and will definitely see her again. 

We knew from the beginning that what we are facing this year is pretty exceptional and we want to be the best parents we can be and to get through this together and that it would be naive to think we could do this on our own. 

Seeing a psychologist is the second thing we did to be proactive. There's no shame in it and we have recommended it to a number of others already because how do you get through this kind of thing on your own? You need help and the shame should only be in pretending like this isn't really tough and you can "man up" and do it without help. 

3. The Cancer Society runs a number of support groups. Now we aren't really support group people but we thought we would give them a go once and if we didn't like it then we didn't have to go again. This is something we teach Knox all the time (try something once, if you don't like it don't do it again. Mostly with food!) so it made sense to take our own advice! Tahu went to a support group for those with brain cancer and found it really good and loved talking to others like him. We found out I could have gone along so for the next one I went too and we both loved it. There's a different topic/speaker every time so we kind of pick and choose which ones we go to but when we go it's always good. 

There's one for the carers (that's me) and I will go next time and see how it is but I've heard really good things about it and I know talking to others in my position really helps so I think it's worth a try. 

So the third thing we did was go to support groups. 

This threefold attack (physio, psychologist and support groups) has worked really well for us and it's something we talk about with others a lot. Obviously those dealing with cancer but really it's anyone going through a crisis of some sort. You probably won't get all 3 options every time but seeing someone to talk about what's happening and talking to others who "get" it is vital in working through whatever the crisis is. Doing it alone is not going to work. 

Journals for our boys

When I was pregnant with Knox I started a journal for him. But I wasn't very good at writing and I stopped before he was even born. Mostly because I got sick and ended up in hospital and then he came early and yeah, it was crazy. But I did keep notes on my phone about things I wanted to write for him.

Recently Tahu and I were talking and he said how he just had so many things he wanted to say to Knox but he might not get the chance. I mean how do you start to tell your 4 year old all the things you want him to know growing up when you know you might not be around to do it? We also talked about how there's so many funny and amazing things that Knox does that we won't remember because we don't write it down.

And then I remembered the journal. I'd kept it and so we pulled it out and started writing in it for him again. It's going to be funny stuff he does, memories we have of him and also things we want him to know. I bought a new one this week for this baby so that both of them will have a journal from us that was started before they were born.

In an ordinary life this would be special but can you imagine how much more special this will be that the boys will one day be given a journal that was written in specifically for them from their mum and their dad? And their dad might not be there anymore. How incredible to have words directly from their dad. I have mentioned this to a couple of friends who have lost parents and they both said how that would be more than incredible. There were tears even at just the thought.

I've been a "writer" for years. As in I've kept a journal since I was 13 and then I switched to blogging and while I did stop for a bit I still wrote a bit in other places. So that I'm doing this doesn't seem that big of a deal but that Tahu is so keen to do this with me shows me even more how amazing he is as a dad. What a thing to do! These journals will be so special for all of us and I'm so glad we have started them early enough to be able to write everything that we want over the next few years.

Tahu has also started keeping his own journal and I have started this blog. This year isn't something we want to remember but we do at the same time and we want to learn from everything and the best way to do this is to record it somehow. Through our writing, the Facebook page and photos I'm pretty sure we will have a good record of everything. The good and the bad.

Fun moments in the mess

Now life is definitely messy, no one can argue on that one. But there's also some really funny moments too. Having a 4 year old obviously produces plenty of funny moments on it's own but add in Tahu's recovery from surgery is pretty much the same as from a brain injury, well there's some super funny things he says by mistake. I won't record all of them but there's a few that made us laugh a lot!

There was that time we were talking about a friend coming to visit and that he could stand under the window and talk to Tahu but the neighbours might find that weird. And so we were talking about things they might say and Tahu comes out with "does your shit lift weights?". What?? What does that even mean!!! Oh man we laughed for days about that one!

When Tahu calls his psychologist his scientologist!

When I asked him to get the heater in from the garage some time cos it was getting cold at night and he brought in the dehumidifier instead and spent way too long deciding which room to put it in and decided on our room (where the heater was meant to go) and so we still had a cold room but at least it was dry!

When we went to his favourite restaurant (yum cha) with his cousins and we got Tahu to order cos he always does and knows all the good stuff and he ordered so much food! We fed about 10 of us, then I had to call my nephew to come down and try and eat the food and he did that and then took home 5 takeaway containers of food and then we had eaten enough food to be able to leave without looking ridiculous! We monitor Tahu's ordering now!

I'm sure there's plenty of others and I'll add them when I remember. And I know that a lot of these "you had to be there" but this is my record so I'm writing it anyway!

Rise and shine!

Warning: this is a moany post. 

I'm not a morning person. I never have been. It's just not my thing. This pregnancy has absolutely made me hate mornings even more.

Firstly for the first few months I felt really sick every waking moment so that was unfun to wake up to. When I was asleep was the only time I didn't feel like spewing.

Secondly I'm normally a type 2 diabetic so being pregnant means I'm being treated as a type 1 diabetic. This means injections. It's supposed to be 10 a day but I'm kind of doing about 5-6. That's 4 insulin injections and then the rest are blood sugar tests. I've recently hit 400 injections so far. Waking up every morning and having to start all over again with awful injections is seriously hard.

And then of course we have the fact that at 8 weeks pregnant Tahu was diagnosed with brain cancer. This means every day we go to appointments, have conversations, deal with cancer stuff when we really hate it. It's so hard to wake up and know today I will have to do a bunch of stuff I really don't want to but it has to be done because it's the difference between life and death for my husband.

For someone who hates mornings, having so much unfun stuff in your day, every day, makes mornings even harder.

No more parenting ego

I used to have this pride about the fact that Knox was growing up in a home without violence, abuse or poverty. It wasn't a perfect home but those are huge factors in damaging a child and they were things we were protecting him from. And then Tahu got cancer and don't try and tell me that a childhood where a parent has cancer is just as good and carefree as a childhood where that's not the case! One day he will look back (or maybe talk to his therapist) and go "wow that was really huge".

I know this wasn't our choice or our doing and that Knox can still have an awesome life but it hurts so much that his life path has changed so dramatically and there's nothing I can do about it. We are doing our best still, we will make mistakes and do the right thing just as much as before Tahu's diagnosis but it still took quite a bit to get my parenting ego back together after I realised this.

When your path leads you to a cliff

I really like using pictures to explain things. Maybe it's because of my job as a trainer/educator or maybe it's just me. I liked the idea of the marathon I talked about earlier but I have other pictures too which I'll try and write about as they come.

I think I'm at the top of a cliff. It's foggy and I can't see what's down the cliff or how to get down but my path has lead me here and the only way forward is down. I have to climb down but I am so scared and so alone and I don't want to do it. But there's no other way but to keep going. It's so scary. I have to get down that cliff and it might be ok or I might get hurt and others can go down using stairs or an elevator but I don't get that option. 

Tahu is with me though and so is Knox and we have to somehow get Knox down together unhurt. I really need Tahu with me to do this. I hope we take the right steps and we can find hand holds all the way down. I hope we get down in one piece to continue on this path. I hope. I hope. I hope. But right now it's cold and foggy and I can't see what the next step is.

Are we parenting right?

There's actually no manual about what's right or wrong to do in a situation like ours. I'm sure there's books out there that have opinions on how we could handle this but there's nothing that says "here's how Knox needs you to parent him during this time". While we can keep life as normal as possible there's no denying that having a new sibling coming is a big deal for a wee kid and then add that Daddy has cancer, well you can imagine we are really on our own on this one.

So what is it that we are doing? We are sticking to our policy of being open and honest with him. We have told him from the beginning that Daddy has something wrong with his head that's because of the headaches he was getting. Once we knew more about it we talked about how Daddy had something growing in his head that shouldn't be there and needed to come out. Knox found a booklet we had been given that had pictures of normal cells and how they turn into tumour cells and so I explained that to him. Once we knew what was happening with Tahu's treatment I also explained to him the difference between surgery, radiation and chemotherapy. I have to say that was one of my lower moments, it's exceptionally hard and just plain wrong to explain to your precious 4 year old about radiation and chemo. Why on earth does he need to know these things? Why did we have to go through this? But he asks questions and I don't want him to be confused by things or to hear things from others that aren't correct. He is very smart and would have known immediately that something was up so it was never an option to not tell him and if this is his new normal then he needs to know about it.

We also took him along to one of Tahu's radiation sessions and explained everything. This did scare him a bit, he was very clingy. But if he knows what's happening for Daddy and that it's not hurting him and the people he's with are lovely then that will make this easier. Chemo is just tablets and it's after Knox is in bed so we haven't really had a big conversation about that.

Now we know others aren't doing the same as us. We know of other families who haven't told their young children that Daddy/Mummy has cancer and that is what works for them. Whether you tell your children or not is completely up to the parents. For us, we chose to tell Knox all that he can understand. It physically hurts to hear him talk about Daddy's tumours or headaches but he knows Daddy can't work or drive and that he isn't well and because he often sees us crying I think it's better to give him the full story from the beginning so that he doesn't lose trust in us (because we say everything is fine when it's clearly not) or he won't have a strong memory of finding out Daddy has cancer. But only a parent knows what the child can and can't handle and what they should and shouldn't know. We aren't going to know until many years down the track if we have done this right so we just have to hope we have.

While we have tried to keep as much consistency in Knox's life as we can, we also let things slide that we wouldn't have before. We pick our battles a lot more now. Knox had started swearing when Tahu was first admitted to hospital and while it was tempting to just deal with that later I stuck to my guns and managed to get him to stop that (a couple of days with no iPad did the trick). I know he needs that stability of having his bad behaviour called out and his good behaviour praised. But then for a few months there he just ate a lot of cheerios, luncheon sausage and mcdonalds because I had no energy to try and get him to eat other foods especially when I was in the midst of morning sickness and couldn't handle anything myself and you know what? Tahu was the healthiest amongst us and where did his veggies and fruit get him? Oh and don't get me started on the amount of screen time he's had this year. I won't be winning any Facebook or Instagram Mummy of the Year awards that's for sure!

If you asked me my tips for parenting through cancer or another crisis, I'd probably say this:

1. You know your child, do what feels right. Always refer back to this one. 
2. Where possible, be open and honest. Explain everything they need to know at their level and be prepared to have to do this a few times because they'll have questions. Keep it simple though. 
3. Pick your battles, let them sleep in your bed if it's easier, let them eat the food they want if it's easier but keep up your normal level of discipline. Don't let bad behaviour go because it's going to make it so much harder when you're back on track and trying to get on top of those issues. 
4. Be kind to yourselves and to them. Sometimes it's ok to cancel everything and spend the day on the couch watching movies and eating junk food. If you find yourself yelling a lot or just not coping, just take a step back and stay in your pjs all day with them if that's what they want. Or spoil them sometimes. One day it was cold and rainy and we were stuck inside and all feeling crappy so we all went out and bought Knox some new lego. It was good to get out of the house but also fun for us to all do the lego together. Usually we wouldn't do this because there was no "reason" but I'm glad we did then. 
5. Lower your expectations of them. You know they probably won't be perfect in public so don't make them come to the hospital for long periods of time or appointments. We tried to take Knox in most days to see Tahu but only for 10-20 mins at a time. Also I made a wee bag for Knox to have at the hospital that had colouring in stuff, toys, puzzles and snacks. I didn't actually end up using it but I still think it was an awesome idea. It was easy to keep by Tahu's bed and gave Knox something to do when he was visiting. 

I could keep writing about what we have been doing with Knox but I think that's probably enough. I don't know if we have done right or wrong but he's coping ok and that's the best we can hope for.

Making a bucket list?

I'm sure everyone knows about making a bucket list (a list of things we want to do before we "kick the bucket") and I'd thought about it before but never got around to it. Now we are in a situation where we really should be making a list of things to do before Tahu leaves us but I can't do it. We won't be making a bucket list. There's a bunch of things we want to do and we will be doing a lot of them in the next 1-2 years for sure but I absolutely cannot bring myself to sit down and write the things we want to do before he dies. We will do the things we want and then we will think of more things and we will try and make as many memories as we can but it won't be from making a list.

Because what happens when the list is finished? What happens if we don't finish the list? Nope a bucket list isn't something we have any desire to do.

Also the things we want to do aren't always the big tick box things you know? Sure we want to go to a football match in England and visit certain countries and all that but we also want to just have great times with the kids and laugh at stupid things. Or like the other day watching Tahu and Knox take out the bath, now that's a really special memory that I wouldn't have been able to put on the list.

I'm not sure I'm explaining properly why I feel so strongly against making a bucket list for Tahu. Maybe it's because it makes it more obvious that we are on limited time. And how do you possibly plan to fit 50 years into 5? And how do you narrow down what it is you want to do when a lot of what you want is just time together to be a family? And for your kids to remember their dad? And how do I put on my bucket list that I just want to see what Tahu will look like as an old man?

Running a marathon

I have this image of Tahu running an ultra marathon in some crazy difficult location but the whole way is lined with people cheering him on. He has to run the race but he has so many people cheering, giving him water and supplies, making sure he doesn't feel alone in this. Knox and I and I'm sure others will be there with him almost every step of the way and yes maybe he could run this race on his own but he doesn't have to. Can you imagine the difference between running a race with your loved ones cheering you on or running it and the crowd has all gone home? This is what's happening for Tahu. He's running this crazy long race but he's not alone and he won't ever be and we will be cheering him on and supporting him the whole time right until the end, whenever that is and no matter what it looks like.

How did we get here?

I don't really know to be honest. Well I mean I know the details and the moments that lead to this point but I don't know how this happened. I'll try and start at the beginning. 

On Friday 24th February Tahu went to our GP as he had been having migraines and an incident of not being able to talk. He passed her assessment but she was concerned enough to send him for a CT scan (and marked it semi urgent).  On Monday February 27th Tahu was called at 1pm saying they could do a CT scan for him at Southern Cross hospital at 3.30pm. By 3.45pm they had told him he wasn’t allowed to drive and they were calling him a taxi to take him to Christchurch Public Hospital. He was admitted immediately. They had found a mass in his brain which they estimated at the time to be the size of a golf ball (after surgery we found it was actually more like 7 golf balls!). He spent the rest of the week in hospital having tests including a standard MRI, a functional MRI and speech, occupational and physio therapy assessments. 

At the first meeting with Tahu’s surgeon we learnt that the original tumor had been there since Tahu was very young as it has caused the bone in his skull to change shape and this only happens pre 13. This is something usually picked up in childhood due to black outs etc but this never happened for Tahu.  A second tumour had now started growing from that original one and that was what was causing the migraines and speech issues.

He was scheduled for surgery the following week but allowed home in the meantime which was such a relief for all of us.  Tahu had surgery on Tuesday March 7th to have a biopsy taken of the tumour. A biopsy sounds small but it is most definitely a big deal when it’s in the brain. He ended up with 22 staples and a piece of bone removed (and put back) about the size of a biscuit. He spent a day or so in the special care unit and then was moved onto the ward which was great cos he could actually get some rest there. Much less activity! The next morning we were told he would have to stay in for at least another night but that we could take him out for a couple of hours so we organised for my parents and Gail, Tahu’s mum to bring Knox to Hagley Park between the Museum and the hospital so we could have lunch together in the sun. This time we didn’t have to use a wheelchair (well we just didn’t ask if we had to) so it was a lot easier!  And then when we got back Tahu’s nurse came over and said Tahu could go home! Of course it was a couple more hours before he actually got to go home but it was still awesome news! We spent the next week or so at home waiting for information from the hospital which was tough but got easier the longer it took. I was able to catch up on work and Tahu watched Breaking Bad and a lot of sport! 

At 11am on Monday March 20 we met with Tahu’s surgeon to talk through his diagnosis and treatment options. I know everyone was hoping for the best but that isn’t what we got. The short version is that he has a grade 4 Glioblastoma Multiforme which is very aggressive. Actually it's the most aggressive brain cancer you can get. If he has no treatment he will only have weeks, maybe months. With treatment it will still grow back. There is no cure for this, just treatment that keeps it at bay for 9-12 months at a time.

The longer version is this. There are two tumours, one that has been there a very long time and has been low grade and has now changed to being mostly high grade. The second one is high grade and has grown from that original tumour and been there probably 6 months. The tumour looked very different to his brain and the parts of the brain they were touching aren’t being used much, if at all, so they were able to remove 98% of the tumours. This is huge! To be able to have them operate is a big enough deal on it's own but to have them get 98% was nothing short of a miracle.  Tahu recovered so well from the surgery. He was home within about 4-5 days and while he had speech problems and lost his "filter" (said and did things he would never usually do) that was all cleared up within about 3 weeks.  After 4-6 weeks of recovery Tahu started a double treatment of radiation 5 days a week and chemo 7 days a week for 6 weeks. He managed this amazingly with a few side effects but nothing we couldn't handle. Now we are in another month off before he starts 6 rounds of chemo (1 week on, 3 weeks off each cycle). 

We have a Facebook page where the details of how Tahu is going will be but this blog will be where I write my stuff. It's both for me to record what's happening for me but also gives others another perspective of what we are going through. I think there will be plenty of mentions of my role as a wife to Tahu, mum to Knox, pregnant with another baby, my own personal experiences and who knows what else. This year is something we absolutely never saw coming and I think it's important to remember and learn from it as much as it hurts.