November - In Gratitude

We have so  much to be grateful for generally but no more so than for the month of November 2013. Several years after Oscar put in his wish with the Make a Wish Foundation Australia he was granted the opportunity of his dreams. Some lovely volunteers delivered plane tickets, accommodation vouchers and some other gifts to our doorstep to send us away to Tangalooma Resort, Moreton Island, Queensland.

Tangalooma is a magical place with white sands and crystal clear waters and a dolphin family that visits each day at sunset to be fed by the marine biologists. This feeding routine started several generations of dolphins ago when lights were first put up on the jetty at Tangalooma. This attracted a dolphin family and people began to feed them. Today, the marine biologists of Tangalooma have a legal permit to feed this family (and any future generations of this dolphin family) only so as not to negatively impact the behaviours of the local dolphin population.

It was Oscar's wish to swim with dolphins (actually, his original wish was to have a pet dolphin we could keep in the bath but failing that we 'negotiated' a compromise). Just standing on the jetty watching the dolphins play was wonderful enough - they are so clearly happy, joyful creatures. So getting to feed them was a real thrill. Much more so than I could have imagined. We got to feed 'Storm' and it was a very windy and wild night so the photo's aren't as good as they could have been but it was an awesome experience. We were all on a high afterwards.

Our apartment was directly above the dolphin feeding area so we could actually sit on our balcony and watch the dolphins playing in the water. We were spoilt beyond measure and even though we were only there a week it felt like much longer. It was magical beyond words and much needed for all of us.

So this blog is dedicated in gratitude to all the staff at Make a Wish who worked hard to make our trip such a wonderful experience, plus all of you out there who donate to this fantastic organisation and all the staff at Tangalooma who showed us such a great welcome. And to any families out there whose child is currently in treatment for cancer or even if you have finished treatment and not yet put a wish in with the foundation - please do so. There was something very symbolically healing about celebrating the hope that wish fulfilment can bring to the heart of a family.

November was also the month when Oscar turned 5 years old and Auden turned 6 years old - and for two whole weeks they got to be the same age. Being 5 years old at the same time was a thrill for them even if it was only for two weeks! It was very low key (they get to have a party every second year and this year was a non-party year) but it was a lot of fun celebrating with them.

Also, November has been busy with opportunities and a different flow to our little family as a result of the holiday. It really was life changing in the sense that we all took a moment to exhale after a fair amount of holding our breath over recent years and just getting into the head space of enjoying the moment without the every day grind that we all have when we are in our home environment.

So, we are deeply grateful and overwhelmed with how fortunate we are and today, December 4th 2013 is our 13th wedding anniversary. We are very blessed and want for nothing and just enjoying this little gift we call our family.

I hope you and all your families are doing well too. Xmas can be a hard time for many families, especially if you have a loved one in hospital. May you find the moments of light in amongst the unnecessary pressure we put on ourselves to create an ideal that does not always exist. May you have some precious time with your loved ones whatever the circumstances and remember that at the end of the day love is all there is. With deep gratitude and much love, Cindy x

RUOK today? Things that help me feel OK that might help you too..\\

I know I promised to share the tips and tricks I am trying to get Oscar to eat good food but he is very sick this week so all bets are off in that department. Usually when he gets sick its nil by mouth except maybe milk, ice cream and yoghurt. So, until he is recovered I thought today would be a good day to revisit my 'R U OK' blog from last year.

Those of you who followed my blog a year ago may have read my story about Post Traumatic Stress and I have had several people tell me that this helped them to identify their own need for some help with recovering from a stressful event or situation in their lives. I always intended to follow up that story with some tips on things that helped me recover from the stress we went through with Oscar's treatment but never got around to it (due, in a large part, to the fact that I was busy figuring out how to recover myself and complicated by the fact that Pete fell through a ceiling).(Pete is ok now, by the way).

So, deep breath, here I will try to articulate how I have managed to improve my mental health even if I may not have totally chased down the shadow that sometimes haunts me. That shadow is really just an anxiety that is brought on by the fact that I know only too well that life can change in an instant and that the ground we stand on is not as solid as we think. That being said, there are many great opportunities provided by the shifting sand that it turns out we are all travelling upon.

Its tricky for me to unpack this as its still very much a process but here are some things that I know for sure did help me:

1. A good GP who can guide you in the right direction (big thanks to my cousin for referral here). Keep an open mind about perhaps needing some medication to help you along if your GP suggests it and make sure you trust their expertise.
2. A good psychologist if your GP recommends it and you feel that talking will help. It certainly helped me realise that I was suffering from PTSD and gave me some simple strategies for coping with it, which in turn made me be a little less hard on myself about the overwhelming emotions that I was experiencing. It helps to have an understanding of the physical facts - like how your limbic system is all fired up from the stress and how you need to try to rewire your neural pathways. There is a real science that can give you real words for the very overwhelming responses you find yourself making to every day normal situations.
3. Exercise - this was the single biggest factor for my improvement. It was something I had control over (after having had no control over my situation or the situation of my loved ones for too long) and it was a concrete practical thing I could do. If you put the work into exercise you get the results back (unlike anything to do with the cancer journey where you do everything the Dr's tell you and they still can't tell you anything concrete about your chances of recovery). Also, it helped me build up some confidence in myself. All that time in hospital focused on Oscar's needs and then Auden's needs and absolutely forgetting myself completely had an impact on my confidence to even think of myself as a separate person with any needs. Exercise taught me I could commit to something for myself, that I valued myself and that I could get out some of my more challenging emotional energies such as frustration and anger by exhausting myself. Finally, and probably most importantly, there is again real science indicating that exercise improves the biological and hormonal factors that contribute to anxiety and depression.
4. Good friends who treat you the same and support you unconditionally. (no need to explain this one)
5. Creating new memories - I have written a blog about this before so I'll just say embracing good health and happiness by sharing precious time together with your family and friends creating new memories really helps the brain to calm down and learn to trust again.

This is just the tip of a very large individual ice burg and no doubt there are many other ways of recovering from PTSD. Yoga and meditation are also very helpful - I have been doing yoga for 13 years though and for the first time ever I couldn't do it for a while after Oscar's treatment finished. I was too fired up and the adrenalin charging around my body could not sit still with a yoga class without bringing on a panic attack. So, very strangely for me, I found myself at the gym working out and pushing myself very hard with weights and cardio just to get that excess energy out of my body. Either way, the most important thing is to keep trying new things to find what works for you. I had to discard who I was (or who I thought I was perhaps) to find what worked for this new me and it took time. Ultimately, time is probably the greatest healer of them all.

I hope you are OK today, wherever you are and whatever limitations you may be experiencing. Thanks for checking in on us and I am sending light and love to you and all your families. Be kind to yourself. Go gently. Much love, Cindy x

Aliens have landed at our house - getting Oscar to eat

For those of you who have followed this journey, you will know that Oscar has a difficult relationship with food and I am endlessly trying new ways to get him to eat (preferably something healthy). As I move on to a new strategy each time I think there is no way I can come up with another way to entice, encourage, trick or bribe Oscar into at least trying new foods...but then, I find another way. He still goes through phases of only wanting a bottle and refusing all food, usually when he is tired or sick, and then we are right back at square one - again - and yet, we find ways. So I thought I might share some of those ways that we have found that work (sometimes) and that might help some of you out there reading this who have children who associate food somehow with trauma/pain or who have had children who have had a nasal feeding tube and other medical/psychological fears regarding food. Also, it might help some mums out there with just plain fussy eaters.

Before I do so, I just want to share a little conversation I had with another mum whose child is currently going through chemotherapy treatment. What was amazing to me was her description of her child's reaction to the meals she presents. It sounded so similar to Oscar that there must be something in it. I just finished a parenting course that focuses on emotional coaching and that linked in with the literature the hospital recommended to me for helping build resilience and emotional intelligence in children. This is particularly helpful for children who have been through some emotionally challenging life circumstances but really applies to any child because we all have emotions, we all have trouble understanding them and we all need to learn ways of managing them appropriately. Anyway, this mum described exactly what Oscar does when I present a new meal to him - it is an extreme, screaming, shaking terror that gives you the impression that the food is somehow going to hurt him. This makes sense in that Oscar had mucositis during his chemo and the ulcers throughout his digestive system and mouth genuinely hurt him and also, after that, I suppose there is the fact that chemo makes everything taste awful, like metal. And if you add to that the fact that Oscar was having treatment from ages 18 months to 3 (years that are important for experimenting and trying new foods) then I guess that is why the emotional reaction to food is so fear based - and so challenging to manage.

Anyway, this mum described to me her child's reaction to food and as it was so similar to Oscar's it made me wonder how common this is among children who have had similar medical intervention in their early life and why no one really can assist you with this in any real practical way. The hospital dietician will tell you what they need to be eating but there isn't a lot anyone can do unless they come home with you, observe the child and offer some practical tips to change the behaviour.

So, its back to trial and error, like everything in motherhood, and maybe if I share some of the things we do to address this issue it might help some other mums out there. So I will post a different strategy I have tried, what worked and what didn't, over the next month or so.

I'll start with breakfast. This is Oscar's least favorite meal. He could just as easily skip it, or would prefer to have a bottle and laze around with it. He's like Pete, not a morning person, and likes to ease into the day. Currently, the strategy that is working is to make it exciting for him. So most mornings we are having 'Aliens' for breakfast - this consists of an egg as the eye of the alien and two pieces of bacon as the mouth. Auden has a goggle eyed alien as he likes his egg in an egg cup and his alien also has hair (toast cut into small pieces). This works a treat so far and is making my mornings significantly easier. Here are some photo's:

We eat them together at the table where there are no distractions and the boys get a sticker once they have finished everything on the plate. Rewards don't always have much of an impact on Oscar (mostly, he couldn't care less) but Auden loves them which creates a bit of competition (something Oscar loves). 

Good luck to all you mums out there trying to get good food into your kids and get them dressed and out the door in time for school/preschool. It can be a test on one's sanity.

Thanks for checking in on us. I have been unwell for some time (just the usual winter lurgy's not wanting to leave) but the boys are well and Pete is working too hard but doing very well too.

I am sending all my love out to you and your families and hope you are doing well and having as many moments of domestic peace as possible. Much love, Cindy x

Check up, immunisations and bribery

Oscar didn’t want to go this morning to see Dr M for his check up and cried and bargained with me for the first half of the trip to Westmead. He asked me to tell Dr M that he didn’t want any finger pricks or any needles. There really is no way to explain away the fact that he was having both today so I did my best at distracting him instead.

When we got there he announced to anyone who would listen (e.g. the entire Oncology Clinic) the following:

“I don’t want to be brave and I don’t want any needles.”

This left a somewhat uncomfortable silence.

When we sat down there was a baby next to us and Oscar said to me, “Well, babies don’t be brave.” So I explained that unfortunately sometimes even babies have to be brave and that he was very brave when he was a baby. This particular baby turned out to be only one month younger than Oscar was when he was diagnosed which surprised me as much as Oscar – it’s amazing how you forget (and a shame that you never do, if you know what I mean).

Then someone from a Church group approached us and gave Oscar a puzzle and a car as a present and started praying over him. Oscar thought the present was great but was a bit confused by a stranger kneeling beside him and saying his name over and over in prayer.  The girl next to us was also being prayed for by another person from the same Church group and she was somewhat evangelistic in her approach. Oscar jumped into my arms and said, “That Lady is scaring me.” So we headed for the play room.

Dr M came and got us and gave us good news. His bloods are good and we now move to two monthly (instead of monthly visits)!! This is another step forward we are very grateful for. In the last 3 years Oscar hasn’t ever gone longer than 4 weeks between visits so it’s exciting.

Then we headed to the treatment room for his immunisation needles. We were in the room with the big fish tank which also happens to be the room they did all those bone marrow aspirations and lumber puncture procedures. I lost count how many – but lots! As soon as Oscar saw we were heading there he LOST THE PLOT. The less said about it the better. As awful and un-fun as it was he wasn’t backward in asking for a treat afterwards, remembering that there are ice blocks in the freezer. He knows how to work the system – he also got another present from the nurses and a lolly pop. Seriously, no wonder he uses bribery as his main ‘negotiation’ tactic.

He fell asleep in the car on the way back and when we got home he woke up and screamed at me in an absolute rage that he hated me and he told me he didn’t want any needles and that “When Daddy takes me he doesn’t make me have any needles.” (this is a bit of a low blow as Pete only took him once last month when I was vomiting but hey, I’ll be the bad cop any day if it means Oscar gets to be healthy).

I may be in for a hard afternoon with Oscar being so angry with me but it’s all good. He can blame me all he likes. I’m just so glad to be heading into the rest of winter with him protected from all those serious contagious diseases which posed a real threat to his life during his treatment.

So, we are grateful to move one more step forward on this journey. Hooray!

Thanks for checking in on us and love to you and all your families. Much love, Cindy x

Three years....

Three years ago today we received Oscar’s diagnosis. We’ve come such a long way and yet that moment is so close below our thin skins at times.  It is not who he is or who we are as a family but it is definitely a part of him and us and the energy that makes up the space we inhabit.

I have nicknamed myself ‘the crying lady’ this week. Somehow this makes it feel lighter than it is or perhaps less discombobulating. I’m all at sea, my mind unable to grasp facts, details slipping away through the strangeness of my minds inability to grasp them. I forget important dates for school, pay the wrong bills to the wrong accounts, get angry at myself that I am so ineffectual and then, randomly and at inconvenient moments, cry a lot.

Much of my tears though are a happy sort of crying as Oscar is growing up so much and I am rendered emotionally senseless by the sheer amazement of it.

Yesterday we had a magic day together. We dropped Auden at school and then came home as Oscar wanted to get dressed in Auden’s soccer gear, including and especially his studded boots. Then we went out, boots and all, to a café and had a special treat of banana bread and a milk shake. When we got home I asked Oscar to choose a book to read and to my amazement he chose the book we got from the Leukaemia Foundation, ‘Joe has Leukaemia’. In the past, when I have tried to read this book to him with the idea that it might help him process his experience he has screamed at me violently and pushed it away. So I was surprised and the timing was somewhat loaded but I forged ahead. This is how our reading went.

Me (reading the title page): “Joe has Leukaemia”

Oscar: “I had that.”

Me: “That’s right, you did.” Then I started to read the book, taking Oscar through the story of Joe feeling sick, having tests, being diagnosed, staying at hospital and how it made everyone miss everybody else and how Joe just wanted to go home.  Then we came to a page with an explanation of what Leukaemia is with cartoon character red cells, white cells and platelets. To my surprise Oscar pointed at them in turn and said:

Oscar: “Red blood, White blood and Pikelets (meaning platelets of course).

Me: “That’s right, buddy”.

We progressed with the story until we got to the page with pictures of Joe with a central line.

Oscar: “I had that.”

Me: “You sure did.”

Oscar: “Yeah, and Z has that too.” (referring to Auden’s friend who is currently going through chemo).

Me: “That’s right, buddy, just like Z.”

Then I turn the page and Joe has lost all his hair.

Oscar: “Just like I did and Z too.”

Me: “Yeah, and then it grew back, didn’t it?”

Oscar: “Yeah, and Z’s will too.”

Me: “It sure will.”

Then we get to the part of the story where Joe is well again.

Oscar: “He’s all better, just like me.” In his excited voice.

Me: “That’s right.”

Oscar: “And just like Z.”

Me (trying to keep the crying lady at bay): “Yes, we hope so, buddy.”

Oscar: “Yeah.”

On the last page of the book Joe says he wants to be a Dr when he grows up so he can help children like himself. Then it ends with the question: “What would you like to do when you are older?”

Oscar:  “A Fire Engine,” with much enthusiasm.

Me: “You mean a Fireman?”

Oscar: “Yeah. And when you grow up I want you to be my mummy.”

Me: “OK, buddy, it’s a deal.” As I say this the crying lady takes over against my best efforts to keep her at bay but Oscar fortunately doesn’t notice because he’s already moved on to playing with a toy and is all done with the story.

I share this with you because in a short space of time Oscar sums up what my limited linguistic ability cannot. He demonstrates the in-the-moment resilience that a survivor must adopt and yet with the knowledge that it is a shared experience. For as we are so fortunate that Oscar has finished treatment and is doing so well, we are very aware of those who are still going through it. Our story is part of a greater story and especially so this week when we personally know several families who are having big weeks in their own journeys regarding this illness and the impact it can have on the bodies and minds of those inflicted and their loved ones.

Today is a strange day. It’s like any other day. It’s a special anniversary of a moment I don’t want to relive. It’s a celebration of how blessed we are. It’s a reminder that others are still fighting hard and that even others have been less fortunate. It’s a drop in the ocean that is life. It’s whatever we choose to see it as in any given moment.

Mostly, though, it is an opportunity. As every moment of now is a moment of opportunity. And so I wish to take the opportunity to say a deep thank you to everyone who has journeyed with us, helped us along the way, sent us positive thoughts, prayed for us, held our hand or just helped us heal. We send our deep gratitude to all the staff who have worked so hard and put up with the crazy lioness version of myself that prowled up and down the hospital ward with worry and terror. And to the other parents who journeyed alongside us and gave us tips and cups of tea along the way.

The other night when I put Oscar to bed he said, “Mummy, I have a little heart but everyone is in my heart, except X (a child at preschool) who is mean.”

This made me laugh but it’s also very wise and true. You are all in our hearts, forever and always. Thank you, thank you, thank you.

Here are some photo’s that capture the magic that is Oscar aged 4½ and going strong. 

I love you to the moon and back, my special family.

Thanks for checking in on us and love to you and all your families too. Love Cindy x

Hyperbole and a Half: Depression Part Two

Hyperbole and a Half: Depression Part Two

Check out the above link for a brilliantly insightful and funny explanation of depression. It really is exceptionally good. X

A short and sweet update

Firstly, thank you so much to everyone who sent me encouragement and support over the last month or so - I have really needed it and I have been so lucky to be surrounded by your kindness. THANK YOU.

Secondly, Oscar's blood results were good on Friday. We are very blessed.

I have been busy like all mums and have been trying to look after a few of my own health issues and needs that have been neglected over the last several years so I've dropped out a bit. Lots of time spent at Dr's, specialists and some challenging adjustments but its good to be crossing these things slowly off my overdue 'to do' list.

So I'm keeping it short and sweet.

Thanks for all the love, Oscar's bloods are good, he still has kidney pain that I am following up on but hopefully this will sort itself out soon. With the help of the exceptional staff at St Stephens Preschool Oscar is settling in a bit better and with the help of a wonderful psychologist I am starting to understand his post traumatic stress and find some strategies to help him. I am finding more and more ways to walk around inside his complicated little shoes and I hope that he is starting to feel a bit more understood. Pete is working lots and doing well. Auden is IN LOVE with school and soccer and is sharing more and more of his wonderful self with us as he learns to read and write. Magic stuff, this kindergarten journey.

Thanks for checking in on us, as always, and thanks for all the love along the way. I hope you and all your families have some special time together over Easter.
Much love, Cindy x