Oscar's 2 year anniversary

Today is the two year anniversary of Oscar's diagnosis. In the spirit of looking forward and sharing important knowledge gained along this journey I thought I would share with you my notes from HOPE (Hospital Oncology Parents Education) Day. They are just in dot form and I have not had time to elaborate on them but they give you an idea of what the day was about, highlight recent research and share some tips on surviving along the way. I hope they give you an idea, make you feel less alone or just encourage you in some way. We were very lucky to have Dr Scott Howard share his expertise and thank everyone involved in making it happen. So, here it is:

HOPE – Hospital Oncology Parents Education Day – notes

“State of the art treatment for leukaemia and the prevention & treatment of side-effects of therapy” address by Dr Scott Howard, MD, MS – St Jude Children’s Research Hospital

-       Explained the importance of attending these events and sharing stories because ‘knowledge is power’

-          In his job as a children’s paediatric oncologist he tackles and subdues the most catastrophic illness children can face

-          Talked about Post Traumatic Stress resulting from expectations not being met. As parents, we had expectations that did not include the trauma and loss that cancer treatment entails for our children.

-          Also, when you finish treatment your expectations are not met because it is not over – the journey for a child with cancer and their parents is for life.

-          Highlighted recent research suggesting Post Traumatic Growth should be a goal to become stronger and to learn to live with uncertainty. This shifts the stress of not meeting your expectations towards a position of personal growth through acceptance of uncertainty and inner strength.

-          Mentioned a website www.cure4kids.org that is a collaboration from parents and a tool for furthering parent education through shared stories and parent groups

Scott also gave us a list of ideas on how we can help out?

-          Support each other

-          Fundraising

-          Help with special projects

-          Reach out beyond borders to third world countries that have a much lower survival rate due to lack of medical facilities for children with cancer (third world countries survival rate for childhood cancer is 20% whilst in first world countries it is 80% for the more common cancers such as leukemia)

-          Support each other (definitely can’t say that enough)

His address was completed with this wonderful quote:

“Cancer is not contagious, love is.”

Questions/Discussion following Dr Scott’s presentation:

Q} What is being done to prevent cancer in children?

Answer: There is nothing you can do toward prevention. There is about a 2% genetic component. Parents want to know why their child got cancer but it is simply just a random lottery of bad luck.

“There is almost nothing you can do to give your child cancer or prevent your child from getting it”

Question: What about the last 20%

Answer: The breakthrough will be in treatment and improvement in medications. Individual mutations need their own research so it is extremely time consuming. The next breakthrough will be in getting faster research results.

Dr Scott Howard concluded with an open discussion about different ways parents found to cope. He suggested three steps that assist in recovery and encourage post traumatic growth:

1.                   Be honest – it is terrible/horrible etc

2.                   Share your stories with each other.

3.                   Be there for each other.

Thanks for checking in on us. Oscar's bone marrow aspiration and lumbar puncture are scheduled for next Thursday 28th June. I'll let you know how we go. Take care and much love, Cindy x

Changes

“The accident caused an alteration which involved a quite unnerving primary change. It produced the unsettling sensation that I had been forced to become something different from what I was, and, more strangely, that I was both the spectator and the subject of the change.”

Tony Moore, ‘Cry of the Damaged Man’, p. 28

The above quote comes from a book written by a surgeon and rehabilitation specialist who is sharing his experiences as a patient recovering from a car accident involving a 30 tonne truck colliding with his vehicle. He tells his story from a patient’s point of view but with a doctor’s knowledge and experience of the hospital and medical system.

It touches on something a well-meaning friend of mine said in the heat of an argument some months ago. She had said, “I want the old Cindy back.” This sentence rings in my head and wakes me up at night sometimes because it is something so separated from the soul of who I am now to even think about the person I was before Oscar’s diagnosis. I have absolutely no idea who she was. I even went to the trouble of going through my photo’s from before D – Day (diagnosis day) and I can honestly say I have no idea who that person was. That old Cindy is a complete stranger to me and as sweet as it is that my friend misses her I have no such feelings. I just simply do not know who she was and do not have the time, interest or inclination in figuring it out. For me, there is no loss in this – just change itself.

“…in spiritual terms loss isn’t reality, it’s a concept created in the mind. When the mind applies judgement to change, what gets created is loss.” p.223, ‘The Path to Love’, by Deepak Chopra.

The human mind and its ability to judge is an important function that separates us from the beasts and ensures our survival. We all judge because we all think and the thought process is what labels our experiences. No one person is ever immune to this. We all wish to be ‘open minded’ and we all fail at this at times, especially when our life is in crisis.

Who wouldn’t resist the sudden change of their child having cancer? Who wouldn’t feel the need to fight against the loss of their child’s innocence and the childhood you imagined for them full of healthy development and joyful memories? It is natural to resist and you cannot beat yourself up about it. You do the best you can in each moment of now and sometimes you don’t do as good as you hoped, sometimes you do better and all of the time you are trying your best to find your way in the darkness that is a foreign world full of new scary medical jargon, nasty procedures and genuinely life threatening circumstances. No one knows the ‘right’ way to cope and no one knows how it ‘should’ be done. You just stumble through as best you can.

For me, the one thing that I kept focusing on was the idea that love heals. This is a cliché and means different things to different people but it is what helped me to get through the days. It is only the mind that resists change, formulates the concept of loss, tells you that you can or cannot do something. If you instead shift your focus from the head to the heart you find that none of these fears and forms of resistance exist. Instead, love lives in the moment, holds your hand and allows you to sit with ‘what is’.

To heal the ones we love and ourselves we go on a journey into the darkness where only love will provide the answers we are looking for. Reasons fail. There is no reason that any child should suffer the way so many do before they have had any time to enjoy life. There is no reasonable way to respond. There is no rule book on how one ‘should’ respond to circumstances that are so confronting to our every perception of life as we have previously known it. The only answer that makes any sense is: love.

So, I may not recognise the Cindy that existed before D-day but I do not care. Perhaps she had a lot of qualities that I ‘should’ miss. But I don’t. I love this Cindy because she doesn’t give her power away as much as she used to and she understands that her power resides only and always in love.

 Take care beautiful people and remember when you are resisting the changes of your life you are merely judging yourself and it will pass. Love awaits at the end of every tunnel of failed logic. Love will always find its way back to open you up and accept yourself and your circumstances. Love will be waiting for you when your ego surrenders to the truth of wherever you are today.

p.s. Our hospital visit went well today. Oscar’s bloods are coming back up slowly, though the platelets need to catch up. We will be back there again next Thursday to make sure the platelets have returned to the normal range. x

Labour of Love - A Mothers Day Tribute

All mothers know the tasks that mount around them. The washing, cleaning, feeding and organising combined with the consoling, negotiating, teaching, guiding and disciplining of little human lives. In the early days this is a 24/7 job with many, many months of sleep deprivation as mums are on call day and night to feed, change and soothe. This is a labour that can only be explained by love when you consider the enormity of the task at hand – in what other circumstances would a sane person agree to go without a full night’s sleep for months and sometimes years?

This is what mothers do and when your child has some special need those early days of extreme care extend out for longer and longer and, in some cases, never end. I recently read an article about a mother of a child with a severe disability. She described having had three nervous breakdowns through the sheer lack of sleep that her daughters care required. Remember those months of night feeds, nappy changes, inconsolable cries that pierced straight through you and had you marching to the orders of some random and mysterious forces beyond your control? For some mothers with children who have special needs there is no end in sight for that ‘phase’ and it is a monument to love itself that any woman has managed to live life in this permanent haze of service to their children’s needs. And yet many have for many, many generations.

My Nan did. Oh, if only I could talk to her now and ask her how she did it. She had five children to raise, one of whom was disabled due to a lack of oxygen at birth. I don’t know the day to day reality of her life when her children were young but I have heard she carried Graham on her back for the first four years of his life just to be able to have her hands free to attend to the other children and household tasks. She had no car and walked to the shop each day for groceries – not a short walk and up hill on the way home. I used to do that walk with her and whinge the whole way some days. Today when I drive past that Street and think of Nan I marvel at her sheer determination. Is there anything more powerful and stubborn than a mothers love? I doubt it.

Many years later when my Nan is no longer here to share her stories I find myself with a child who has special medical needs. The journey has been full of challenges. I think of the months and months I had to wake every hour to check his temperature, change his nappy, strip the bed and wipe away the excess wee (the medication would make him wee through a nappy in an hour) and more often than not the vomit. No matter how I managed his medication he still vomited, he still urinated excessively,  he still needed me on an hourly basis and we still ended up in hospital. Months stretched out around me in a fog and at times along the way I became him and he became an extension of my ability to keep him here. And I became a mother who is perpetually exhausted, worried, beside herself and broken in half by the guilt and worry of whether I could do a good enough job to get him through this journey that his DNA and blood cells have sent us all on.

Today that care is less but still we wake him each night and give him chemo, we change his nappy and yet still he wakes early having wee’d through the three nappies I have put on him in. And still he wakes early and I have to strip the bed, wash the bedlinnen and his pjs, dress him in fresh pjs and try to conjole him and his brother (whom he has woken) back to sleep.

And yet, this is what we do, for love. This is the work of motherhood. Sure the wages suck but is there anything you wouldn’t do to see your child survive and hopefully one day thrive or at least be the very best that they can be given the cards that life deals us and them along the way?

One day I look forward to burning his mattress and the layers of medication, urine and vomit that it has come to represent in my mind. One day we won’t have to give him chemo. And maybe one day in the very far off future we won’t have to go to hospital to check his blood. We are one of the lucky ones (though nothing is guaranteed).

The truth is, even if I had to do it for the rest of my life, I would, as many mothers do. I take my hat off to them because it is just exhausting and soul destroying work at times. But a mother’s soul is gladly given up for the love of seeing her child grow or develop into the potential that only a mother truly sees.

The truth is, if I had to do it the rest of my life I might have a nervous breakdown or two myself and there are many, many days when I just want to run back to the predictability of working and put the boys in full time child care. Ah, to have a ‘To Do List’ that is achievable, ticked off and completed at the end of the day – not to mention a pay packet and a sense of self esteem.

But that is not my journey and that is not the journey of many much braver and more compassionate mothers than I. These women are silently struggling for a brighter future for their children no matter what it takes and they are a source of endless inspiration to me.

This Mothers Day I will be thinking of my Nan and all the mum’s who continue to selflessly give themselves over to the exhausting job of caring for their children no matter what.

Stay strong and take time out to remember that you are worthwhile despite the invisible jobs that you tirelessly do. Every moment we get with our children is precious and the labour of love is rewarded by the richness of their personalities, their smiles, their laughter and their simple and joyful presence in our daily lives.

Love is all there is. x

All in all....Oscar's update

In the last five days I have had the pleasure for the first time in many months of Oscar just 'being', without any virus impacting on his precious little personality. It was great to get a glimpse of who he is underneath the endless stream of head colds and virus's and the medication cycle that is his 'normal'. He is such a chatter box and an absolute delight.

So it came as no surprise that his bloods are now very low. This is because we increased the chemo at a time when his bloods were showing high due to the constant impact of virus's in his system. Its hard for the Dr's to know that its a virus when it goes on for so many months and they worry that they aren't giving him enough chemo to do the most important job of killing off any dormant leukemic blood cells. So we increased the chemo to be cautious and now his bloods are crashing down and he is neutropenic.
We will decrease the chemo but his bloods will continue to fall for the next week or two and we have to keep a careful eye on him in case he gets a temperature as he has nothing to fight it off. At the moment his neutrophils are 0.5 and may drop to zero and his white cells are 1.4 and may also drop close to zero in which case it may be a trip to hospital for a few days. The platelets are doing well at the moment at 203 but they always follow the white blood cells so they will drop too in the next fortnight.
All in all, all is well. This is just part of the journey and we know what to do to take care of him. In the mean time it is tempting to consider taking him out of preschool for a few weeks to protect him, although Auden brings everything home anyway. Food for thought over the weekend.
I know I keep promising photo's but life keeps bumbling along around me at such a pace I never get more than a few things on my 'to do' list completed. Some day it will happen...
Thanks for checking in on us. Dr Margaret is away for whole month and we will miss her lots but she will be back in time for the big day and will perform Oscar's bone marrow biopsy and lumber puncture on 28th June (like anything, this date can change so don't fix it too firmly in your mind but if it does pop into your mind from time to time send it happy vibes for us).
We ran into some old friends, some of whom are doing so much better than when I last saw them I feel humbled at the tremendous strength they have shown to beat the very bad odds they were dealt, and some of whom are not doing so well as the dreaded cancer has returned to ravage their families again. My heart goes out to them and to all families everywhere.

Take care beautiful people and love, love, love one another. x

Update - yukky needles, nice nurses, angels, volunteers, pirate play and clowns - such a rich tapestry of moments

I am very slack with posts lately as I just haven't had the heart to write about the same old thing (even if it is still very precious to us in this household).

So, I will keep the update brief. Oscar's bloods have consistently been higher than the target for maintenance and they cannot increase his methotrexate dose as his liver function test shows his body cannot cope with any more. So we have increased his other chemo drug and hope that will do the job. This week his white blood cells had come down ever so slightly but heading in the right direction. At the end of the day though there is nothing to say that any of this is either "bad" or "good" - just outside the target that statistically has been successful with other patients over time. We are used to this uncertainty and I choose to think that unless otherwise told all is well with our gorgeous little man despite whatever the statistics say.

He is growing up and I promise to get some photo's on here soon when I get a chance. The last few visits he has been upset by his blood test and yesterday I had trouble getting him in the room. Auden was with us and Oscar screamed the whole time. The look on Auden's face said so much that the nurse had tears in her eyes and said to me, "I can't watch his little face. It must be torture for you." This particular nurse is always so upbeat I was completely thrown. Dr Margaret, bless her cotton sox, came in and gave Auden a hug and took him away for me. She is like an angel always watching over us when she has so, so many to watch over and we have the very least in demands medically these days. How to say thank you.......

We were also showered with the generosity of some lovely lady who hand stitches small bedspreads for children with cancer and Auden and Oscar both got one. Auden put his on his bed as soon as he got home, so proud and happy with it. Also, the Clown Dr made them both balloon swords and we headed out to the fantastic park with the boat on hospital grounds and Auden and Oscar were pirates singing their pirate song (the theme from 'Jake and the Neverland Pirates'). The real Wiggles were also at the Oncology clinic but Oscar hadn't had his blood test yet so was too nervous and distracted to care. Auden thought it was exciting though. Thank you to the generous souls who volunteer their time at the hospital to find ways to show they care and to make our children smile.

There are so many little and big things on this journey that bubble along under the surface of a family and make it richer in both challenging and wonderful ways. Just like everyone's journey really but with the volume turned up from time to time. Sometimes now we forget that the expectations one might "normally" have are no longer relevant and it takes your mind some time to catch up with what is realistic in your particular circumstances. Auden said to me today, "Mummy, how can we make Oscar happy?". To which I explained that he is happy but he just cries excessively sometimes because he gets tired. The reality is he has huge mood swings that change from instant to instant and there is a ferocity to them that is scary sometimes but that overall he is a very happy camper. Soon, his hospital visits will be less frequent and hopefully he will finish chemo and have the opportunity to shine for who he is without medical intervention.

His bone marrow biopsy and lumbar puncture are booked for the 28th June and if the results are good he will get to finish chemo. Deep breaths. We crawl closer..

We also had the joy of visiting with one of his little friends from hospital who is due to finish a month after us and who started her first day of school this week. How divine it is to see them play together outside in the big world beyond hospital. They have really shown us how to embrace the moments.

Thanks for checking in on us. I wish you and your families much love and healing. x

Germs, glorious germs

No doubt I owe you all an apology for my inability to blog lately - we have all taken turns in being sick, when we haven't all been sick at the same time, and our energies have been focused on the simple things - getting food in, keeping it down, breathing through our clogged up mucky noses and trying to fit some sleep in whenever we can.

Oscar's bloods have remained consistently high but that is no surprise given said illnesses. This week he also had a flu injection and even Dr Margaret was away sick. Sydney is full of germs it seems lately and we are definately not alone in our germ frenzy and we are lucky to be in a position where germs are simply something we experience like everyone else as apposed to them being a threat to Oscar's life. So, in some strange way it feels good just to be exhausted and sick from something that we know will run its course (despite all the endless whinging). One thing is for sure if you can whinge about it it really can't be that bad! (Although this does not take away from the fact that the whinging is getting to be very annoying). The lack of sleep is a walk in the park compared to the daylight hours with toddlers who are discontent with everything and generally iritable. And even more annoying, they are still adorable and treasured even when they are out of sorts and driving you crazy!

Nothing much else to report. The hospital car park is being renovated which is a total drag and adds another dimension to our visits that we could live without but we are glad we only go fortnightly. We have been surrounded by such wonderful friends with gifts of incredible generosity and thoughtfulness and Auden has been unconditionally embraced by his Pre School friends and all the mums who help us out. He went home with his best friend and had a wonderful play date whilst Oscar and I were at hospital doing what we do.

We did have a call suggesting that Oscar go ahead for his circumcision last week but he was too sick to go under anaesthetic so he is back on the wait list for now. Waiting is something we are very good at, so definately no rush there.

In amongst all this blur my thyroid was very low and I am waiting for the medication to kick in so that I don't have to do that thing in my head all day where I tell myself to push through the tiredness and fog and keep pushing. Soon I have no doubt a blissful calm will descend upon me and I will become the confident, powerful mummy who knows what's going on around her (although I am not sure my thyroid medication is quite that good)....but you get the gist.

All is well. Thanks for checking in on us and a special thank you to everyone for your compassion and friendship these last few weeks. In amongst all this chaos I have been very spoilt and feel overwhelmed with your generosity. x

Clinic Visit Wednesday 29th Feb 2012

Oscar's bloods have been high for a month now so we are increasing his methotrexate dose going forward. Nothing to be concerned about, just a 'normal' part of the journey. All is well.

Going to clinic has changed since Oscar has been going to Pre School as he is so tired he doesn't want to go and puts up some resistance. Plus, we have to drop Auden at Pre School before heading to hospital and often get stuck in horrendous traffic on Pennant Hills Rd. The combination can be intense and usually I distract Oscar and myself by affirming all the positives of our visit: "Margaret will be there". "We will get you a smiley face biscuit." etc for Oscar and for me, "It will be quick and easy today etc." This week my brain was too confused and overwhelmed to get these simple sentences out of my mouth. It was like I had drifted outside my own body and I could see this other me (outer body Cindy) floating above me saying, "I can't be bothered. I don't want to do it. etc". Meanwhile the physical Cindy was telling the outer body Cindy, "Oh shut up, stop complaining, grow up, this is a walk in the park compared to so many other things you could have to be doing today. Get on with it." Still, neither Cindy could get past these thoughts that seem to have taken on their own life and with Oscar screaming, "I want to go home. I don't want the lady to hurt me", I had to surrender to my own inability to get it together this one time and turn some nice music on and just ride it out.

Of course, once we got to hospital and found the ever illusive parking spot in the rain and got ourselves going we switched into our hospital personalities and found some sort of ease in the routines we are so used to. Oscar ran around the poles, weaving in and out to the front door, we greeted Donna with enthusiasm, signed the necessary paperwork, found the food trolley with the biscuits Oscar likes, said hello to Margaret (who has been away for our last two visits and who is such a comfort and joy), and so forth. Oscar changed his entire way of approaching his blood test, wanting to sit on the chair by himself and arranging things the way he wanted them. Soon, it was all done and time to go home. Margaret always looks after us and it was nice to have a shorter visit this week. When Margaret is there we find something incredibly safe and easy about clinic visits that is a real treasure to us and very deeply personal to Oscar's journey.

Not surprisingly, given my mental state, when we got back to the car park I couldn't remember where I had parked the car. So I headed up the ramp with Oscar and thought I saw a car like mine and headed towards it but Oscar said, "Where are you going mummy?" To which I replied, "To find our car". "But mummy its up there, we have to go up there." "Where?" I ask and Oscar says, "I show you".

He led the way straight to our car two more floors up the car park and then said, "4 ramps mummy, here it is. Silly mummy." Bless him. I had to laugh and said, "Maybe you should be driving too Oscar seeing you are doing better than mummy today." Oscar then said, "Oh, no, mummy I'm just a little boy not a big boy".

He sure know how to lighten one's mood. Having said that I spent the trip home in a different mental battle, thinking about one of the mums I ran into who we spent a lot of time with on the ward. It struck me how odd it is that I know so much about her life, how she had to sell her house, move to be near the hospital, leave her infant daughter with her mum and live in hospital for twelve months with her son and all the other little details that made up a microscopic part of her journey. And yet, here I run into her to find out her son has relapsed and she is gearing up for another long stint of treatment and all the associated upheaval for her whole family. How much we know about each others journey and yet how little we can protect one another from the personal details that are uniquely our own. My heart goes out to her and it is another reminder of how precious life is and how we have to grab every moment.

There's nothing like a trip to Oncology Clinic to rearrange your head space, give you perspective and a good kick up the pants for any weakness in thinking that is a luxury of those whose lives are running relatively easily. When in the thick of trauma it is so easy to have the self discipline to only give energy to the things that are real and matter and when life starts to even out a bit we can slip into unhelpful resistance.

If we learn anything from trauma it is this ability to focus on what matters most - acceptance of our own humanity and love, love, love. Beyond that the brain needs to just get on with it. Life is short.

Take care beautiful people. Be kind to yourselves and one another. x