The universe, its sense of humour and seeking that silver lining...

The universe has a wicked sense of humour, don't you think?

This morning I woke up and found myself worrying about Oscar again so I thought I would distract myself by reading a parenting magazine I subscribe to on my ipad. It's good for recipe ideas for trying to get Oscar to eat something other than bacon, or salt or milk. Anyhow, I had given myself a good talking to and told myself to do something positive. Find a new recipe to cook for tonight or distract myself by reading a few articles.

I flip a screen up at random and the title is, 'Building Hope'. Sounds like a nice positive story to distract me with. It turns out to be a story of a little girl who has ALL (the same leukemia as Oscar) and has relapsed twice. Yep, like I said the universe has a wicked sense of humour sometimes.

The reason I am sharing this with you though is to let any other families with kids with cancer know that there are some great improvements in treatment being researched and trialed all the time. This particular little girl was told to go home and arrange hospice care but her parents did some research and flew her directly to The Children's Hospital of Philadelphia where an oncologist had pioneered a new leukemia treatment which involves removing T cells from the patients body and then programming them in the lab to attack her leukemia cells and returning them to her body six weeks later. Three weeks later tests showed there wasn't a single cancer cell in her bone marrow and seven months later there are still no signs of the cancer returning.

It is my deep desire that no one reading this ever needs this information but, just in case you might, I wanted to share it with you. Imagine if this became the future for cancer treatment and perhaps even replaced the need for all that horrendous chemotherapy. Imagine if it cured all those patients who relapsed. Imagine if it can be used in other cancers and in adults too. Imagine....keep researching....keep up hope and stay positive as much as you can (and be kind to yourself when you can't).

I send this information out into the ether and I hope it reaches the right people at the right time and that the universes sense of humour has a miraculous silver lining for any families suffering at this time.

Take care beautiful people. x

Results, layers, choices...

I have been waiting to be in the right frame of mind to write an update but have had trouble finding that 'right' space in me head.

Oscar had his check up last Wednesday and all is well I think but it was a bit of a different experience. His white blood cells were the highest they have been since he was first diagnosed (when they were extremely high). The Dr checked out all his bruises and his testicles and, well, all of him. This is not the way it usually is but they played it very cool so as not to alarm me. The thing is though you can pick up that energy in the room. After being asked if he has been unwell I explained he had a head cold so we think that may be the cause of the high cell count. I think they were worried.

The next day we went to the urologist and got the results from Oscar's kidney tests. Basically, one of his kidneys is doing all the work, probably because his reflux on the other side prevents the other kidney from doing anything. We aren't going to do the test to confirm the reflux because it is a pretty awful test and whatever the outcome won't change what we are currently doing. This is all ok, you can live with just one kidney (although it freaks me out that only one kidney had to do all the work of coping with the huge amounts of chemotherapy that Oscar has been through). There is nothing we need to do other than ensure he goes to the toilet regularly and have his kidneys checked every 12 months to make sure surgery is not required.

Overall, I am not fully capable at this time of functioning well let alone articulating myself here. Wednesday freaked me out and I finally succumbed to the temptation of researching 'relapse' on the Internet. I promised myself I wouldn't and have not done so in the last eight months since he finished treatment. But this week scared me and then this time feels a bit crucial because the chemo will have finally left his system. Now we get to see how he goes without it. I didn't sleep much after this and I am not proud of the fact that I can't be more positive, less fearful.....especially when I recently ran into another child who went through treatment about a month ahead of Oscar who has relapsed. How can I not possibly be more ecstatic and full of enthusiasm for enjoying every moment that we are so lucky to be having with Oscar? 

When we visit hospital there are layers of emotions. Nothing is simple. We get the joy of seeing the staff who have in many ways become a part of our extended family. We get the gut wrenching devastation of witnessing other children's journeys at various stages along the way. We get the magical rush of pure surprise and delight at seeing a child with hair and health for the first time (for we have only previously known them during very real sickness). We feel survivors guilt when our child is doing well but another child we know and care about is suffering, relapsing or worse. We feel the shame of not having the courage to always live with the gratitude and joy that good health should result in. We feel powerless about the circumstances we and our fellow journeyers are experiencing and there is the fear/concern/worry that sometimes creeps back in despite the fact that we know they are not useful emotions.

They say we create our own reality with our thoughts and even though we can't control the circumstances of our life we can control how we think about it. This is true. This is what gets you through. At the other end though there are just too many thoughts sometimes. Too many layers. Making the right choice of thought is something we have to have the self control to manage. No one else can do it for us. We also have to model it to our kids who aren't always doing so well with the many, many things that they have been bombarded with along the road to good health.

Sometimes though, there are too many thoughts. Too many layers. 

For me, at this time, I must retreat. Don't get me wrong. I know I'm extremely lucky at this moment in time. I know that every day is precious. I know that I can make better choices but sometimes we all need to take a break from making any choice at all. 

So, I am going to just 'be'. Whatever layers surround me I am going to breathe in and out, do yoga, meditate, try to get some good nutrition into Oscar (which feels especially pressured given that it is crucial to good cell health and prevention of relapse), help Auden adjust to school life and cry when I need to. Laugh when I can.

Take care beautiful people and thanks for checking in on us. I know all is well somewhere outside the layers that are fogging my brain and that the fog will clear. May you and your families find yourselves in the light. x

Hospital adventures today...

Oscar has had an adventure filled day today. He had his usual blood test at Oncology clinic - except they took it by needle through the arm as last time (and many other times) his blood clotted and they had to re-do the test so they wanted to make sure he didn't have to go through that again.

Then, 9.30am renal ultrasound - he thought the warm gel they used on the ultrasound machine was lots of fun and as no one was giving him a needle he liked it there.

Then, 10.30am we headed to nuclear medicine for a DMSA. He had to have a needle in his hand that injected some dye into it. Not so keen on that but then we headed back to Dr M at the clinic and all was well with the world. Bloods good :-).

Then we had some free time to go up to the Variety Ward and visit a friend of Auden's and Oscar's from Preschool who was in hospital having chemo treatment. It was lovely to catch up (even though, of course, we wish terribly that he and all the other children did not have to be in there). He's such a brave and beautiful boy and it was a privilege to share some time with him and his amazing mum.

Then we went back to Oncology clinic so Oscar could have his three immunisation injections. Again, Oscar unimpressed but recovered quickly when the nurse opened the toy cupboard and offered Oscar one to take home. All pain magically forgotten.

Then we went to the pirate park and played and distracted ourselves until it was finally time to head back to nuclear medicine for the kidney scan. Oscar was completely strapped in for 45 minutes with the scan machine moving slowly around him.

He did good, as always but passed out about 10 minutes after we got in the car so it was a big day.

Meanwhile, Auden had his first sleep over last night and then spent the day with his best friend. He was so excited about it he almost popped and it was such a monumental help for me to just have Oscar to concentrate on.

As always, we were deeply grateful and impressed by all the staff who helped us at the hospital and especially to my friend Mel for taking such good care of Auden. He had a blast and I feel very lucky to know that he was safe, well cared for and having fun in such a loving home.

The ultrasound and DMSA are both for his urinary reflux and not related to Leukemia specifically. They are checking if his kidneys are damaged. When he had the ultrasound one kidney was smaller than the other (this was the same side that had the more severe reflux) and he is not emptying his bladder properly. What that means and the scan results will be given to us when we see our urologist next. I'll make an appointment with him tomorrow but I'm sure all will be well.

Now, me thinks it must be wine o'clock. So good to have all these tests behind us for now.

Thanks for checking in on us and take care beautiful people. x

Magic new memories - we thank you

I am incapable of putting together the words that come close to saying thank you to all those involved in providing me and my family with a magical holiday. We needed it. Deeply. And we appreciated it. Greatly.

It's been so long we forgot just how essential holidays are. If you can, when you can, however you can - get away. That's my number one tip for anyone recovering from stress in their life. Make new memories.

Here is a tiny glimpse at some of the new memories we made. The smiles on the boys faces say so much more than any words that I can find to come close to expressing my gratitude to all those who made this holiday possible. Much love, Cindy. x

All you need is love...

"That's the spiritual meaning in every situation: not what happens to us, but what we do with what happens to us and who we decide to become because of what happens to us. The only real failure is the failure to grow from what we go through."

 Marianne Williamson, 'The Gift of Change' (p.5 Kindle Edition).

This Christmas has been magical for me and my little family. Discovering really for the first time what it is like to have the joy and fun of Christmas without any hospital commitments or distractions. How lucky and grateful we are for the spirit of Santa and wishes come true.

I don't want therefore to talk about anything at this moment in time about health. Period. I am having a little holiday from that responsibility by pretending that it does not exist. Because if you are lucky enough to be at home with your loved ones at this time of year - nothing else really does exist outside that little cocoon. We may all rush around, spend too much money, have too many commitments and go slightly crazy at this time of year but it is all a wonderful luxury that leads to the real privilege of spending time huddled up together as a family. Visiting loved ones, sharing presents, eating food, drinking wine and being together.

For those of you still in hospital though I send my love and light and wish you well. You are on my mind. You are in my heart. And as we head into the New Year may it be one full of healing and love and the creation of new memories of fun times.

I began this entry with a quote that I just read the minute before I started writing. There are things about being in hospital that suck (obviously) but there are some real moments of intimate privilege that heighten your life experience in ways that definitely enrich you. There is the complete absence of 'normal duties' - so you don't have to do the dishes or vacuum the carpet! - and there is this vast opportunity in the space that an isolation room in the middle of the night can provide for you to really strip away all that other nonsense.

In a dark room, in a ward full of sick children, in a strange place that is becoming oddly familiar you can feel like you have dropped of the planet into some strange vortex. It is in this space where you have nothing to distract you except the beating of your own and your child's heart.

In that space you know with all your heart that the only thing left is love. You know that you have a choice in how you respond to your circumstances as surely as you are painfully aware that you do not have a choice in what those circumstances are. You know that you have to remove absolutely everything from your life that does not come from love. You have to strip everything away and go back to the intuitive consciousness that you had as a baby, before linguistics and socialisation. You are in an embryonic state, free floating in a womb of the unknown. Being.

Perhaps it is no coincidence that you are returned to the embryonic state at a time when you are fighting for the health of your child's cells, their very DNA, as if you must re-grow them and give birth to them all over again.

I remember a night in the dark in an isolation room with a little boy named Oscar. It was a scary night and I did not know whether that little boy was going to make it. We had dropped off into the void together. And I held that little boy in my arms all night. I sat, my back in agony, and I held him in my arms and I decided that if love heals then I will love him more than any love ever known to the human experience. I sat up and focused every single cell of my being, my every breath and my every thought being pure love. I imagined that the love was radiating out from my chest into his and I sent loving thoughts like a mantra looping over and over in my consciousness into his.

The next morning a Doctor ran into my room elated, handing me the results from Oscar's bone marrow aspiration. They were as good as they could possibly be and they were the big ones we had been waiting on.

I did grow that night. I knew from my heart and not my head what the secret to this miracle of life really is. As someone who spent too many of her adult years studying law and looking for the facts with my mind, I discovered the truth with my heart.

To all families out there trying to love each other through each and every night remember that circumstances do not define us, they do teach us and that it is a journey that never ends. Growing takes time, it takes the nurturing care of people accepting you for who you are in any given moment (good or bad) and it takes unconditional love of yourself and others.

Some moments we fail, we fall back on the habit of fear, other moments we evolve and remember who we are by letting go of the idea of life and just living it from the heart.

I have failed many, many times on Oscar's journey to health - as his carer, his mother and his role model. I have given into fear many times and I am not proud of those moments and I have shared some of them with you on this blog. I am grateful for your patience in reading what was not always uplifting to read and in your unconditionally returning to this blog to support me.

I have also risen to all sorts of unimaginably challenging situations with genuine selflessness and love, as all mothers do. I have had to push myselft past the limits of my mind and dive deep into the freedom of my heart and I hope I have shared some of this tremendous light with you amongst the darkness.

We all have limits. We can all grow past them. We are all one big family trying to find love in the dark night. You are not alone and when you feel alone (as I do many, many times) it is not necessarily because others have abandoned you but because you have abandoned yourself. You have failed to be kind to yourself by trying too hard or forgetting to forgive or by just simply expecting too much.

Love is the answer. No matter what the question.

Take care beautiful people. Thanks for checking in on us throughout 2012 and may 2013 be full of health and happiness for you and all your families. x

Oscar's Medical Update

Yesterday Oscar had his first appointment with the Paediatrician for his asthma. He was the most lovely, lovely man but he sent us immediately down the road for a chest xray because he wanted to make sure that there were no nodules on his lungs or that there was no evidence of cancer. He said, given Oscar's history, we should check that first. So me and the boys went for an adventurous walk down the Pacific Hwy to the Nuclear Medicine place. The boys thought it was wonderful because we had to go across the train line and they could watch trains (although they would have preferred to stay there for the rest of the day). There is no activity that cannot be transformed into magical fun when your 4 and 5 that's for sure.

The xray had to be done a few times as Oscar wasn't too keen on it at first but then he decided it was all ok and they got the picture they needed. You can't rush Oscar at these things. He has his own method of coping and the best thing you can do is respect that and wait for him to be ready. They are awsome at understanding this in the Children's Hospital but this poor technician seemed somewhat out of her depth with him. Had to laugh and roll with it.

Auden was a superstar and stayed out at reception with the absolutely wonderful receptionist. He made a card for Oscar and drew and took over the reception desk happily. Then we headed back to the Paediatrician to wait for him to read the xray. So it was a much longer afternoon than expected but we had a lot of fun along the way.

The Paediatrician said he thought there was a bit of a shadow on the lungs but that it was probably nothing to worry about and normal but that the Radiologist was going to look at it for him and he would call me if it was a problem.

Aside from that little deviation we now have an asthma plan. Two puffers and a nasal spray which should mean he starts to improve in the next month. If he has to go to hospital at any stage or has a critical episode we do have an issue about giving him any prednisolone (Redipred) because he had large doses of this during his cancer treatment and it does make the cells multiply (there is probably a much more medical way of explaining this) so we wouldn't want to give it to him without consulting our Oncologist and will probably need to find an alternative.

He's not so keen on the nasal spray and has so far had an absolute meltdown each time we use it. This morning was a spectacular display of rage with him screaming at me "leave me alone, don't touch me" and throwing things wildly. He is sick of all medical intervention and really does just want to be left alone. Plus, he is just not feeling 100%. Auden gets upset by this too, of course, and tries to cheer him up as best he can. Oscar is also on a food strike. Has been for a while now, since his symptoms got worse and he is just a bit fed up with everything. He will drink milk to the cows come home (ha ha) but that is just about it. I am trying to get an appointment with the hospital dietician to see if they have some strategy I haven't tried (we must be up to strategy 127 by now) and Redkite have given me some great books to read to him to help him cope with his emotions.

As for his Urologist, things appear to be ok in that he doesn't have a urine infection but we need to go and have a DMSA to check his kidneys are functioning and an ultrasound. So all is well, or as Oscar likes to tell everyone "My penis is better now."

That is the full medical update. If I don't hear from the Paediatrician today I can assume his chest xray is normal. I'm sure he was just being extra vigilant given Oscar's history and that all will be ok but I must say for a short moment there when we rocked up to Nuclear Medicine unexpectedly I got a bit of a fright before I reminded myself that this is a journey where you go with the flow and don't worry unless someone with a medical qualification tells you very specifically that you need to.

So we keep flowing. Tonight is Preschool Xmas Concert - can't wait. Auden has been practicing his singing day and night and is about ready to burst with excitement. Oscar has missed the rehersals but I am practicing with him and hoping he rises to the occasion and gets up there and has some fun too.

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

Good news

Just a quick message to say that Oscar's urine test came back negative so we don't have to worry about that for now. This is good news indeed! He seems much improved since he started the antibiotics so hopefully we are back on the trend towards wellness and having fun (not to mention some sleep).