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Friday, December 23, 2011

Christmas Clinic Visit & Christmas Joy

Oscar's bloods are stable. Now, that's a sentence I have never written on this blog before! So we are lucky to have things running smoothly for him this Christmas - and what a difference 12 months can make. This time last year he looked just terrible and was in a pretty bad way, plus we were heading into hospital every other day for chemo injections including Boxing Day. Today, when we had a heavy rain shower he was running around outside, naked and as joyful and full of energy as any three year old can be. Such pure spontaneous joy!

Our clinic visit on Thursday went well. I had baked some ginger bread cookies in the shape of stars and angels and my friend Mel kindly helped me ice them. I took them in for all the staff who have done so much for us and we also gave Dr Margaret and Donna a special christmas cake each. Such small offerings for such amazing and caring people who give Auden and Oscar so much love in amongst the chaos and the care - how can anyone adequately say thank you. It was such a wonderful thing to be able to say thank you, however small, and very emotional as well.

If any time of the year is special for children its Christmas and it was so hard walking past the Camperdown Ward, thinking of the children and their families and knowing something of how they may be feeling. Last year I remember helping put up the Christmas decorations with the nurses on the ward and it felt strange walking past them this year.

So we were glad to have our visit over, to have given back in some small way to the people who spend their every day giving so much of themselves to the care of sick children and to know that we are so blessed to be spending Christmas at home with our boys and with Oscar doing so well.

I have never been this excited about Christmas, except maybe as a little kid. I just can't wait. I love every minute of it. I took Auden to the shops this morning and there was a queue a mile long for Bakers Delight and just rushing chaos and queues everywhere and all I could think was - I love the energy, enthusiasm and pure indulgence that everyone throws at Christmas. I just love, love, love it after having spent a lot of time around the hospital where there is inevitably so much stagnation.

I felt so joyful I could burst and then when I got home the heavens opened up and Oscar did his rain dance and eventually convinced Auden to join him. Life doesn't get any better than this and tomorrow most of Pete's family and my family are coming to our house for a wonderful celebration. I don't know how we are so blessed but I am just bursting to share it with everyone.

Take care beautiful people, thanks for checking in on us and may you have a safe, happy and peaceful day tomorrow with the people you love.

Wednesday, December 14, 2011

Oscar and Auden Photo Published

In the latest edition of 'The Chemo Chronicle', Auden and Oscar appear in photo's of the Oncology Clinic play room. The photos were taken several months ago and I had forgotten all about them so it was with great excitement that I stumbled across them as I was reading the latest edition.

If you have a copy take a look for yourself on page 16 - under the title, 'What's been happening in the Clinic', the top left hand photo is of both Auden and Oscar and then in the middle of the bottom row is a photo just of Oscar. I scanned the page and tried to attach it here but I can only put jpeg images here, not PDF files - so, alas, I can't share their moment of fame with you.

There were a lot of great articles and some friendly faces throughout this edition and it was great to catch up on how some of our fellow families are doing. I particularly want to shout out to Katherine Machon, who appears on page 15 for the great work she is doing in giving back to the Oncology staff through the Oncology Parent Advisory Council. It was so great to see pictures of you and Aiden (he looks so great with all that hair!!). It made my heart sing to know you are going well. I carried around a ginger bread man for some months hoping to run into you as I know that Aiden always loved them. It was a real privilege to share the journey with you and I really hope we run into each other some time soon. Oscar would also love to see Aiden.

Meanwhile, we are getting into the joy of Christmas and revelling in all of it - even the shopping. Last year Oscar was at the hardest phase of his treatment and we had to head in on boxing day to the Camperdown Ward for chemo injections and so forth - so it is a sublime treat to be in a better place this year and all I can say to all those shoppers getting stressed out is - enjoy every minute of delicious time contemplating the magic of giving to the ones you love and spending time with them over the holiday season.

Take care beautiful people. x

Wednesday, December 7, 2011

Clinic Visit - 8th Dec 2011

We had a quick and easy visit to the hospital today - in and out within 2.5 hours and, wait for it, Oscar's bloods were almost within the target range for maintenance. Although this is only the second time in the 9 months that he has been on maintenance that he has come close to being in the target range Dr Margaret said its probably not something to worry about too much as it may be he has been fighting an infection most of that time. So, all in all, a great visit.

We have increased his antibiotics back to twice daily, every day, to manage his urinary reflux until I see the specialist in January and we find out what action plan is needed to address the fact that he still has this issue.

Auden had a lovely day at Pre school and had the added bonus of being picked up by one of his closest friends mum's and going back for a play date while Oscar slept and recovered from his big day. We are very blessed and grateful.

Thanks for checking in on us and take care of yourselves and your families at this special time of year. We are back in Clinic 22nd December (and no doubt it will be very busy) so I'll let you know how it goes.

Tuesday, November 29, 2011

The universe provides encouragement and some good advice too!

Last week when I was feeling doubtful about continuing with this blog I sent a message out to the universe asking, ‘What should I do with my blog? Should I stop writing it?’
To my amazement the next morning I awoke to find an email in my inbox that started as follows:
I asked that you contact me after coming across and reading the great content on your blog—your site really caught my eye.”
So, with deep gratitude to the universe for providing encouragement when I needed it most I would like to share with you an article written by Melanie Bowen (the author of the above email).
Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics.
Here is her article:
The Importance of Fitness For All Ages
Perhaps you're feeling down about your doctor's opinion on your life expectancy. Maybe you're feeling glum because - let's face it - being sick is never fun. Whether you're dealing with mesothelioma, leukemia, skin cancer or even diabetes, medical issues can wear you down physically, but emotionally, as well.
You may be under the false impression that exercise is for healthy people, but this isn't true. Even if you're very ill and are exhausted from battling your terminal illness, exercise can help improve the way you view your body, your disease, your physical appearance, and even the world.
While traditional medical treatments may be exhausting and stressful, a bit of relaxing exercises can not only burn up nervous energy and help stimulate your muscles, but can also relax your mind and help you let go of the tensions of the day. You don't need to buy expensive gym memberships or purchase fancy home equipment in order to reap the benefits of exercise. In fact, there are a number of ways you can incorporate fitness and exercise into your daily life that are both inexpensive and simple to get started with.
For example, when you're preparing for a treatment, consider taking a brisk walk outside. You might enjoy watching the sunrise or maybe you're more of a cool evening person. Walking up and down the stairs of your home is also one way to get your blood pumping. While exercise may at first be a bit overwhelming and tiring, you'll soon find that you have increased self-confidence and increased energy levels.
Make sure you discuss any exercise plans with your doctor before you begin since, depending on your health status and treatments, he may have information or suggestions for easing yourself into exercise. Don't be embarrassed or shy to admit that you want to exercise despite your diagnosis. Your doctor will be able to not only help you figure out your current fitness level, but can offer suggestions for increasing your fitness level slowly so you don't injure yourself or become overwhelmed with the idea of fitness.
If you're scared to try something new alone, don't be afraid to grab the help of a friend. Sometimes just having someone who isn't afraid to look silly and dance around the house can be a great way to ease into at-home exercise. Put on some music and shake it loose with your friend. You can eventually work your way up to aerobics or an at-home step exercise program.

Tuesday, November 22, 2011

Bad blood, waiting for wee and I smell poo - our day in hospital

To treat Oscar’s urine infection we were given a course of antibiotics to take 8 hourly for 7 days. Unfortunately, the hospital pharmacy did not put enough antibiotic into the bottle and we ran out this morning on day 5. I rang Dr Margaret to get some more and she said to come to clinic and get it over and done with while we are in there. So that is what we did and this is the story of the comedy of events that followed.

I was well prepared for a considerable wait as Dr Margaret had mentioned it was a GA (general anaesthetic day – meaning lots of kids having bone marrow aspirations and other procedures) so we didn’t hurry. When we got to the hospital car park it was full and we waited and then circled around and around for some time before finding a park on the very top level in the pouring rain. I got the pram out of the Ute and the boys into the pram and then raced down the many ramps and into the hospital. When we arrived in clinic they didn’t have someone to take bloods so we headed down to the general pathology for the hospital and there were only 3 people ahead of us, which was great. When Oscar got called in Auden insisted on coming and was fantastic, sitting still and waiting for Oscar’s blood test to be completed. Oscar likes to pull the little table out that we lean his arm on and then he likes to set up the cotton wool ball, band aids and white swabs himself for the nurse. There was another kid in the room who was autistic and hysterical about having his blood taken which I thought might disturb him but Oscar submitted, with certain controls, happily and we were done. On our way out four staff members were holding down the little boy with autism trying to get his blood test completed while he screamed and fought like mad. Auden was worried about him but Oscar said, “It’s ok, they helping him.” Auden seemed to accept this as the natural law (because Oscar said it) and was happy to go back to Oncology and play while we waited.

Two hours later Dr Margaret tells me Oscar has to have his blood test again as his blood clotted. So we have to head back to Pathology. I leave Auden with a little girl (I will call her X) he always plays with and her mum and the volunteers in the play room at clinic and head to Pathology again. It’s after midday and Oscar is troppo tired and keeps asking for bottle bed but we are lucky and we get one of his favourite nurses for the second blood test and this is enough for him to rally through it.

We head back to wait for the results and to collect a sample of his urine for testing. While waiting with X and her mum we get talking as we do each visit. X has a rarer form of cancer and has had a long 14 month intensive treatment with huge amounts of time spent in hospital. Today is to be her last intensive dose of chemotherapy but X’s mum has been told that her Oncologist is on holidays and hasn’t left any instruction – so the chemo had not been ordered and there is some disagreement about whether she has finished treatment or needs this last dose. X’s mum has spent last night plying her with the necessary medications in preparation for her treatment today and has been told in the past that every chemo treatment is essential. She doesn’t want to leave without the treatment. She has been waiting since 8am for the staff to locate her Oncologist on holiday by phone and verify that the treatment can go ahead and also waiting for the chemo to be made up.

To top all this off, X’s mum is feeling a bit fragile after having found out last week that her daughter has been on an incorrect medication for 9 months. This medication has severe side effects and her daughter has reacted terribly and, despite asking questions at every stage, each of her four specialists including the immunologist failed to realise she didn’t need to be on this medication. If that isn’t bad enough all the staff had a meeting about this issue several weeks ago and not one of the people present at that meeting thought to ring X’s mum and say, “Stop giving her the medication.”. So, let’s just say she is not feeling a strong sense of safety about the care that she is being provided.

I tell X’s mum she is doing so well not to be screaming and yelling at this point in time, having been given a different story by all medical staff involved in today’s confusion and still waiting and giving her daughter preparation medicine for the treatment. She says that she doesn’t like to complain and that she has lost it several times before in this process and feels very close to losing all control. We discuss how awful it is that you have to be pushed and pushed and pushed by the system into a state of unnatural and unnecessary rage against a machine that never listens until you are in their face screaming. X’s mum says the only times she feels she has truly had a sense of getting the correct treatment has been when she has been raising her voice in an extreme fashion that is so far beyond her normal self that it makes her feel like she has been possessed.

This is amazing to hear as from my experience of seeing her every fortnight for the last year she is always so deeply quiet and almost dispossessed – when she talks about her daughter’s prognosis and current status she talks as if it is happening to someone else. I understand this completely and recognise it as the coping mechanism that it is because if you don’t detach from this journey you can’t always do what needs to be done as a mother. I like to call it the iron mask of extreme motherhood and it is an essential mask allowing you to attempt your best at modelling some form of calm and resilience for your sick child.

I don’t tell you all of this to share the grief or burden you but because I think these stories are never told, precisely because the iron mask of motherhood requires us mums to keep it all together for our children at the very least. We try to show everyone we are coping; we are calm, good, attentive role models for our children no matter how much we are pushed beyond our comfort zones or how much we witness our children being forced to submit to all kinds of unspeakable situations.

The combination of trying to find your voice so that you can stand up for your child sufficiently when the system that is inefficient impacts upon their level of care and feeling the intense responsibility of that care being in your hands and the desperate need to shut your voice up in order to stay calm and appear as the model of motherhood is a form of insanity. I feel strongly that more needs to be done to support the parents in hospital. There needs to be an advocate who takes over the role of following up with medical staff about serious questions relating to their care as they arise. As a parent who had to truly push herself to the end of all rational reality to be heard in hospital I can say that just the exhaustion of asking as many people as possible until you find the right resource is hard enough. Surely, there could be an expert who we could delegate this too, especially when we have had no sleep and are in no fit state to do anything other than barely breathe in and out. No wonder there are children who have been abandoned living in hospital. There just isn’t sufficient support for parents and if there is someone out there reading this who knows how to go about changing this I’d love to hear from them.

In the meantime, Oscar’s bloods are improving. We will wait to see if his urine test is clear and continually check it from now on. I have an appointment in January with a paediatrician kidney specialist to follow up on his reflux which we are presuming has not yet healed and to check how his damaged kidneys have held up over these long months of chemo. Next appointment is Thursday 8th December in clinic.

We didn’t get out of there today until 3pm and I had forgotten to eat and Oscar had poo all through his pants, running down his legs and in between his toes and we had to push the pram in the pouring rain back up the many ramps to the top of the car park, which was flooded. We finished up with my shoes immersed in water ferrying the boys from their pram to the Ute and Auden saying over and over, “But I can smell poo Mummy”.

All I could think is how lucky I am that I have found a reliable team of Dr’s for Oscar’s treatment and that these little inconveniences are insignificant when compared with the massive issues so many parents are facing as they hull up for another night in there.

My thoughts are with them and with all of you and your families. x

Wednesday, November 16, 2011

Urine Infection Confirmed

Ok, the hospital rang to say that Oscar has a urine infection. It is the type of infection that usually stays in the gut but can transfer to the urine. I don't know if this means it is related to his urinary reflux or whether it is due to the bout of gastro that we have all had. They are allowing us to treat him at home with oral antibiotics for a week and then we will go back to Clinic next Thursday to see Dr Margaret and review his bloods and treatment. Pete is heading in to the hospital pharmacy after work so we can get the antibiotics into Oscar tonight. Its a great thing that Dr Margaret is so thorough, that we have identified the source of infection before the temperature and resulting trip to emergency and now we have a reason for why the bloods are so high. All in all, all is well. Thanks for checking in on us again and I will update you on the status of Oscar's bloods next week. Love to you and all your families. :)

A huge day in hospital

I'm sorry I haven't blogged for such a long time for all those of you who have been wondering about little Oscar. He is a big 3 year old now and full of mischief. I have been feeling disheartened about writing on the blog for various reasons. I am thinking of ways to change what I write here, to find a different approach that fits the different place we are at on this long journey but I haven't quite reached it yet.

The important thing is its about Oscar and I want to continue it as a record for him. So, today was a huge day. Hospital wait time was long and then they discovered they hadn't taken enough blood and we had to start all over again. Oscar's entire approach to Clinic has changed now he is a bigger boy (as he keeps telling me) and he likes to take control of as much of the process as possible. So, having to break it to him that he would need a second blood test today wasn't ideal, especially as it was midday and his bedtime, but he stepped up and did what had to be done as he always does (although not without telling the nurse very definately - "But you already done blood test. But, you did it. BUT, YOU DID IT ALREADY. OSCAR ALL DONE in very load screams). I just love his ability to stand up for himself.

Auden was an angel and trooped along colouring in, playing with trains and cheering Oscar up when he was sad. Not one whinge or complaint. Its a lot to ask waiting most of the day in hospital but he just knows how to help out when it matters most.

We met up with another mum in clinic who I haven't seen for a while. I am in awe of her. She has two boys 11 months apart who sit quietly eating fruit and drawing for hours without any chaos or harm being inflicted upon each other or anyone else. I have always thought they are twins but they are just 5 and just 4 years old. The most well mannered, quiet, patient little boys you could meet. When we used to see them on hospital stays they would both be sitting up in the hospital bed quietly reading books. No restlessness, no load yelling, no fighting. I always thought to myself, 'How does she do it?'. Today she appraoched me and asked how Auden has coped with Oscar's journey. I said he has struggled more than Oscar. She smiled and sighed saying she had wondered as her boys are close and the sibling has suffered a lot more adverse long term effects and she wanted to know if that was my experience too. She said she has looked all over for books of stories of other mums and asked but the hospital don't provide any support for siblings and she has found her son clinging to the one best friend at preschool and struggling with any separation even though he has had so much separation from her with his brothers treatment. She is from Japan and has no family support and just the calmest, gentlist, caring mum. We had a good chat and it helped us both to know that our sons were having such similar experiences. I told her she is an exceptional mum and her boys are just divine because she is an inspiration to me.

When we were told that Oscar had to have his bloods redone she got most upset on our behalf, which was funny because she is always so reserved and shows how she too can get overwhelmed by the frustration of the system. Usually, the mask of motherhood is so claustrophobic it disguises these feelings but its easier to feel it on behalf of another mum. We had a good laugh at the 'go with the flow' system that we feel deep gratitude for and absolute resentment all at the same time.

Then Dr Margaret tells me Oscar's bloods are very high and she is concerned. I don't have any real reaction to this because I have learned that reacting to blood results is pointless. No one ever really knows what they mean so unless they can tell me something definate I just let it roll off me like water of a ducks back. We took a urine test and we will get the results on Friday. If they come back positive we may have a stay in hospital at the weekend, which messes with the boys combined birthday celebrations, so fingers crossed its just another blood result that makes no sense (or he has a virus or any other number of other things,,).

This is why I don't update you because the updates don't mean anything concrete and I am trying to live a life without focusing on blood results and medical statistics. This journey of medical testing won't finish until Oscar is 9 years old so we have to just get on with it. If we place Oscar's medical status at the focus of everything we miss out on the good stuff.

I am moving on to focusing on different ways to help the people who helped me. I have been learning to run and can now run 5km. I want to start doing some fundraising for Cure Our Kids when I can and working towards the City to Surf next year. I am working now and life is busy with things that include Oscar's health (of course) but are not exclusively centred around it.

We got home today at 2.30pm and collapsed on the lounge together and all three of us slept until 5pm (although it could better be described as 'loosing time'). We awoke wondering where we were, how it got so late and feeling generally out of sorts and confused. Its amazing how exhausting it is in clinic - physically and emotionally - and how so much of what you are taking in is subliminal. There was one child in particular today who was in a diabolical state and it doesn't impact you in any conscious way but somehow the energy of the place infuses you with the suffering and courage and patience and madness of the journey that is also such a deep part of you and your journey. Noises, smells, situations, decisions, negotiations that you don't want to have with your child - all bubbling away under the mask of coping and finding the joy of every second of connection that you have in clinic with anyone and especially with the people who are your central support team (Dr Margaret, Donna, Mary, Sunil, Erin - we love you). Phew, glad its over for another fortnight (hopefully) and glad its always there to help our little Oscar turn 3 and smile and clap and make himself heard.

Thanks for checking in on us. I hope you and all your families are doing well. Take care. x

Tuesday, October 4, 2011

Oncology Clinic Visit 5th Oct 2011

Thanks to everyone checking in on us and sorry I haven't been updating the blog. When Oscar gets sick things get very crazy around here and with a whole lot of other stuff going on its just been heads down and get through it.

Oscar was in hospital Friday 23rd September with a temperature. His white cells went from 3.6 to 12.6 in 48 hours and all his other bloods followed. Fortunately, the Dr on call at Emergency sent us home just before midnight after checking there was no sign of infection in his urine and ears, nose, throat etc. We were glad to be home but his temperature continued relentlessly for another 48 hours. Panadol did nothing and he's not allowed to have nurofen so it was baths and washclothes and no sleep but he fought it off himself and was back on track three days later.

This week we were keen to see if his bloods had recovered and they are certainly heading back down in the right direction:

Hb: 122
WCC: 5.4
Neut: 3.9
Plts: 272

Still, the target for white cells is between 2 and 3. No change to chemo and we'll see how he is on the 19th.

Auden loves being part of the journey and always gets excited when I say we are off to see Donna and Dr Margaret. This morning he promptly sat down and drew them both a picture as a present, which they loved.

We are so exceptionally lucky to have such a caring community to share the journey with. In particular, Donna and Margaret have become like family to the boys and we are very grateful that they have been present from the very start of Oscar's journey and continue to be such a giving and welcoming presence in our life.

I'll let you know how we go on the 19th.

I hope you and all your families are doing well. Take care of yourselves and each other.


Sunday, September 4, 2011

Since my last blog we have been super busy: Pete has started two different jobs, I have had to chase the first employer for money as he was very dodgy, Oscar’s bloods crashed and he was an emotional roller coaster that we all had no choice but to ride, Auden started to get very angry that his brother was so violent one minute and then so much fun the next, we’ve all had a virus, my mum moved in until her new unit was ready, my mum moved out, Pete had a middle ear infection, then a severe tooth ache, he had his tooth removed (as an alternative to the root canal the dentist was keen on) and he injured his eye at work. His ear ache eased, his tooth healed and his eye is still giving him trouble – he has a scratch on the cornea. Oscar spent Saturday morning in emergency with a foot injury that thankfully turned out to be soft tissue damage. Oscar came home proud of his bandage and Peter popped his eye patch on, Auden had a head cold and mummy was in need of a good lie down. What mummy isn’t?

In amongst all that chaos we have been getting on with the usual regular activities as best we can with the highlight being Auden and Oscar's swimming lessons at Knox Grammar. I can highly recommend them to everyone and very reasonably priced. They have given our boys a private class for the price of a group one and been absolutely fantastic.

So, all in all, like everyone else, we have been super busy but doing very well.

It is what it is.

I am that I am.

Take care and happy fathers day to all you great dad’s out there.

Thursday, August 18, 2011

The Certainty of Change

It’s been a while since I updated you – apologies but it has been an extremely hectic month. So many things have happened I don’t know where to start. Except, I guess, the big stuff.

Our beautiful Marshy(our cat) had to be put down. I went to the vets as he was throwing up and off his food and was told that he probably had cancer. The vet started to explain that we could give him Prednisolone injections to see if he responds – this is the same drug Oscar was on for two months and made him unable to walk, woke him several times a night for a feed and bloated him up like a balloon. Just the mere mention of it made me sick to my stomach. So I said I needed to think about it but as she investigated further she found he had a kidney stone and his kidneys were completely shot and we had no choice but to have him euthanized. The vet kindly gave us a few days so I could take him home and Pete could get to see him and we could all say goodbye. It was an excruciating few days where all he wanted was to be on me and not just sitting on me but right up at my face – he wanted his face against mine. He slept next to me and it felt like he was genuinely trying to crawl inside me. So I told him – no need, you are already in there. We were so lucky to get to say goodbye. I held him as the vet gave him the injection and I know he had a good life and a good death, which is more than many living beings get. So, we are grateful, though sad.

The day after I was told the about Marsh Pete came home early from work because he had been retrenched. This was huge in many ways but especially because his boss had been so superbly understanding and supportive of Pete’s situation with Oscar and gave him time off whenever he needed it. There are no words sufficient for the gratitude we feel to have had that kind of understanding at such a hard time. This is especially the case because the Dr’s and Psychologists at the hospital made it very clear to us that the children who have the support of both their mother and father during treatment are statistically more resilient and able to recover from the trauma. We took that to heart and did our best to give Oscar the support he needed and that was only possible because of the understanding of Pete’s boss. Thank you, thank you, thank you.

And so we move on.

Pete got a new job within a week of being retrenched - how lucky is that! And we are all adjusting to lots of changes.

Auden has been asking endless questions about Marshy. It was huge for him as Marsh sat on his lap every morning and kept him company when we were all away for long periods of time and when he was missing Oscar so much. Oscar hadn’t been asking any questions until yesterday when he got up and walked into the kitchen and said, “Let’s go get Marshy from the hospital Mummy”. Ah, the sound of a mothers breaking heart. This is the exact connection we were trying so hard to avoid. That the boys would think that Marsh got sick and went to the Dr’s and didn’t come home is our worst nightmare because Auden is always so worried when I go out with Oscar that we are going to hospital and won’t come home. In fact, whenever we go anywhere Auden starts saying over and over, “Mummy, Daddy, Oscar and Auden come”. This is whether we are going to the park, the shops and so on. When I drop him to pre-school and leave with Oscar he asks over and over, “Mummy and Oscar come back. Not go to hospital.”

So you can see why we wanted to avoid the association that Marshy got sick and went to the hospital and never came home. But you can’t change life and the boys have some wiring in their brains from their experiences, as do we all, and this is just their journey.

To create a positive association we planted a tree for Marshy and the boys both helped us dig the dirt and said, “we love you Marshy”. Time will heal and all is well.

On the medical front Oscar is doing well and his blood results were within the preferred range for the first time since starting maintenance therapy 5 or 6 months ago. So this is great. On the down side he is getting a lot of the side effects such as nausea and vomiting and extreme constipation no matter how many anti-nausea or anti-constipation drugs we give. It’s not affecting him all the time but a fair amount – enough to make it uncomfortable for him.

He is also still very anxious around new people. We go to Little Kickers (toddler soccer) every week and so far he spends most of the time crying and being fearful of everything and everyone. Any new people or new environment does this to him. It makes for an exhausting hour trying to coax him to rejoin the class and make sure he doesn’t disrupt everyone elses fun, including Auden’s – who gets very distracted by Oscar’s crying.

So – it’s a mixed bag and there are days where I am reminded that Oscar has had a huge journey and has special needs (for want of a better way of describing it), as all children do. In his case I forget sometimes just how far he has come and how much it has affected him and then, one day or two, he reminds me that he is special in many ways and that we have to take it at his own pace. Auden adds to that by always taking care of brother and by being acutely aware of where all of us are and reminding us constantly that he likes it best when we are all together.

Amen to that.

Tuesday, July 12, 2011

Clinic Visit - Bone Marrow Results and Bloods

Oscar's bone marrow results confirm that his blood is clear of all Leukemic blasts! So, he is still in remission and all is well.

His white blood cell count is still too high at 3.5 (although this is the lowest his cells have been on maintenance). The goal during maintenance therapy is to keep the white cells between 2-3 to ensure any dormant blasts are killed off. Before increasing the chemo for a 6th time we are checking Oscar's liver function just to be certain his body is coping.

We had the joy today of running into another little girl, Ella, who was diagnosed not long after Oscar. We haven't seen her in many months and she was looking amazing. It was great to see her and her mum and dad during better times. Oscar and Ella have shared hospital rooms and many, many hours in clinic together fasting, not fasting, having treatment, getting bloods taken and playing in the play room. In fact, today was her one year anniversary and she looks so good with all that hair! It was also good for us to get some tips from one another and just take a moment to say - we made it this far! Congratulations Ella and all your family.

Dr Margaret is away on holidays for a few weeks so we will be taking our luck with who we see next visit. Oscar has been very tired in the last week but aside from that he is a normal 2 1/2 year old having fun with brother and getting into all sorts of mischief.

Thank you. Thank you. Thank you.

Take care everyone. x

Thursday, June 30, 2011

Anniversary Bone Marrow - all done!

Oscar's bone marrow aspiration is "all done", as Oscar likes to say. He also had his second flu vaccine shot while he was under anesthetic. His bloods are stable. I'm not sure but I think he won't need another bone marrow aspiration for another 12 months, all being well. He's had so, so many and its great to have another milestone behind us.

When he has blood taken now he walks into the room and says VERY LOUDLY to the nurse, "Don't hurt me". When she continues to get the needle ready he repeats it a number of times and finally gets up real close to her face and says, "Plleeaassee, don't hurt me". It makes the nurse feel very bad but I absolutely love his ability to stand up for himself and get himself heard in a place where it is so easy to become your patient number. They all adore him in there and when he gets home he walks in the door and states, again very loudly, "Had fun with Donna and Margaret" - meaning Dr Margaret, of course. Its a testament to the incredible job they do that he can go to the clinic and have a nasty bone marrow aspiration and come home to declare how much fun he had. We are so lucky to have such wonderful people to share this journey with.

All is well. Thanks for checking in on us.

Wednesday, June 22, 2011

One Year Anniversary

Yesterday was the 1 year anniversary of Oscar's diagnosis. We had a wonderful day - visiting Wahroonga Park and later going to our friend's, Brooke and Curtis's house, for a play date complete with Tim Tams and mini donuts by the log fire. What more could a person want? Life is good.

In the lead up to the anniversary the boys have been having fun painting 'Thank You' cards which we have posted out today. I hope I have remembered everyone - so, so many people to thank. I have been waking in the middle of the night remembering another incredible kindness and adding names to the list continually. So, if I have left you out, please forgive me. I will no doubt wake one night and wonder how on earth I could have let such kindness slip my mind. We have been so blessed with kindness and I have been so sleep deprived and overwhelmed it is a blur at times. Rest assured, every little thought, text, prayer, food drop-off or other generosity has been greatly appreciated and the two words - thank you - seem so inadequate.

Finally, I wish to thank each of YOU, who have taken the time to read this blog despite the fact that it has been sometimes unpleasant reading, sometimes sad, sometimes whinging, sometimes way too personal, sometimes distant and sometimes strange. Also, of course, hopefully, sometimes encouraging, positive, hopeful and maybe even playful. Either way, it has been a source of outlet for me and has helped me find a voice for a journey that very often defies articulation.

So, thank you for bearing with me and hearing my voice in whatever way I could manage to articulate it.

When we open our hearts and listen to another persons story we are listening to ourselves - for we are all one big united family experiencing this sometimes crazy thing called life.

Thank you, thank you, thank you - we are blessed. x

P.S. We were at hospital today and Oscar's doing well. His bloods are heading in the right direction as they have come down somewhat but need to keep heading that way. All is good. Next Thursday 30th he is booked for his bone marrow biopsy.

Friday, June 10, 2011

Oscar's June far

Oscar is doing well. The bone marrow is re-booked for 30th June. I'll let you know how it goes. We are hoping he is healthy and we can get a more accurate blood reading soon. He has been on maintenance since March and so far we haven't had a real indication of how the chemo is working as he keeps getting sick and has abnormally high bloods while he fights off the latest infection.

All part of the journey though so we are going with the flow and not focusing on results, outcomes or agendas.

This month we have declared 'Gratitude' month in our house as we head towards the anniversary date of the beginning of this journey. I'll be posting some of the 'thank you' projects we are throwing ourselves into as a way of honouring everyone who has helped us get this far. More on that later.

Thanks for stopping by and checking in on us. We hope you and all your families are taking care and staying well. x

Tuesday, May 31, 2011

Oscar sick

We headed into emergency on Sunday morning as Oscar had a temperature. I knew it was because he had finally caught the viral infection we have all had but didn't know if his bloods might have crashed or not. When we got there we were greeted by Josh, one of Oscar's favourite nurses, who was surprised to see Oscar so miserable. Even when he had mucositis he could manage to be social - but not today. Mr misery he was.

They put us in the isolation room where we had spent our first day almost 12 months ago waiting to be given the dreaded diagnosis. They then took us to the same treatment room as diagnosis day and, dejavu like, had trouble getting blood from his veins. It was Oscar's first time in hospital without his central line and we sure did miss it. The first attempt didn't seem to really go into the vein and the Dr kept moving it around inside his skin - which he did not like. So they swapped hands had another go and eventually we got there but then she spilt it all over us. I felt sorry for her as she was clearly nervous and overwhelmed.

Given that we are fast approaching the 1 year anniversary of Oscar's diagnosis it was hard not to feel like I was in some kind of weird time warp, given the similarities of experience. I remember on diagnosis day I had been bombarded with an entirely foreign language of medical terms and statistics and I was in such deep shock I couldn't even get close to understanding any of it. I also remember fixating on the one bit of information that seemed vaguely possible to digest - a nurse had said that we would be getting to know the hospital very well. I remember thinking over and over about how I didn't want to get to know this hell of a place well but trying to focus on it as a possibility in my otherwise hijacked-by-shock brain.

It was so interesting to shadow a portion of that day because we certainly do know the hospital very well and have become professionals at dealing with the procedures and inefficiencies that are part of this journey. We knew almost every nurse and doctor we encountered, as well as both of the orderlies. They all knew Oscar, not just by name, but by character and personality. When they lost the bloods that had been so painful to get and they came to tell me I wasn't surprised and I told them, "Don't worry, they will turn up. If not, we will just have to do the procedure again". When they found the bloods 2 hours later but had forgotten to order a chest x-ray (which meant a further 2 hours wait) we just shrugged and focused on creating the little bubble we have become so good at creating. This bubble involves Oscar setting up his DVD player where he wants it, me heading off to the freezer where I know I will always find a tub of ice cream for Oscar, Oscar eating his ice cream and sharing it with me, Oscar naming every object in the room including many medical instruments and me finding out which Oncologist is on duty (we were in luck - it was the Dr most likely to let us go back home if Oscar's bloods were ok) and some other simple things that make us comfortable.

We certainly have come a long way from that chaotic, terrifying, overwhelmingly shocked and anxious day almost a year ago. Its still not easy but we have so many great little tricks to help us through the moments that come our way, random and chaotic as they will always be.

After we finally had the x-ray we ran into a nurse in the corridor on our way back to emergency. She has looked after Oscar many times and stopped for a chat marvelling at how big he has gotten and how she had never seen him so miserable. Everyone agreed - he was not the Oscar we all know and love.

The good news was his chest was clear, his bloods were high and we were discharged on the proviso that we go straight back in the next morning for further assessment. Best outcome ever!

When we got home Auden asked Oscar, as he always does, "Did you have fun at hospital?" Normally the response is "Yes, Oscar saw Donna and Margaret" - it is said with great joy as he loves Dr Margaret and Donna from the clinic like they are family. This time though his response was just as honest and direct. He yelled, "NO, I didn't" and burst into tears. Bless him, it was such an awful time, especially with the bloods being so difficult.

It was a crazy busy day the next day. They swabbed his mucus to test for some of the scarier viruses and checked him over once again.

Thursday he is still scheduled to have his bone marrow. This is the one they like to do 12 months after diagnosis. We will have to wait and see how well he is as he is still a misery and they may not be able to do it. I'll let you know. They expect to see that he is still in remission. Again, I'll let you know when we know.

Take care everyone and thanks for checking in on us.

Tuesday, April 19, 2011

Oscar's doing ok thank you

Oscar's white cells have gone up yet again so the Dr's are increasing his chemo again. He is either really resistant to the chemo or hiding an infection of some sort they think. They have given us the ok to go on our holiday despite Oscar having a nasty head cold and have given us a referral for the hospital closest to Nelsons Bay in case he gets a temperature. They have notified the hospital about Oscar and his condition as well (boy, it sure has become complicated to get away for a few days!!)

The hospital was full on chaos in the lead up to Easter so it was very long day but, touch wood, we are hoping to get out of Sydney on Friday. We have all been sick this week so I am hoping we all start to get better so we can enjoy our long awaited escape from Sydney for a few days - and maybe even get a full nights sleep.

In the SMH on Saturday I read an article about how leading stem cell researchers from Australia and the US met up to kickstart some collaborative projects, sharing funding and taking applications for projects such as a biology program that would increase understanding of blood diseases and develop new treatments for them. In a perfect world the many cell samples Oscar has donated each time he had a bone marrow biopsy will be used by one of these scientists around the world to help some other sufferers of blood disease. And in a utopian world Oscar's pain and samples will somehow contribute to a cure. Stem cell research gives us hope that we might find such a cure.

Back in this moment of now, in this reality, we are grateful for each day and doing the best we can. We are also excited about getting away and breathing some new air for the first time since all this trauma and just reminding ourselves of the freedom and peace of the ocean.

Have a great Easter everyone.

Thursday, April 14, 2011

Blood results Friday 8th April

I haven't been able to update you as my computer has been playing up so sorry for the delay. We went to Clinic last Friday 8th April for our usual visit. Oscar is used to going into the room where they take bloods full of trust and excitement to see the nurses he knows and get a sticker as reward. He is incredibly shocked when they inflict pain by putting a needle in his arm. He looks very confused at them as he screams, like they have changed the rules on him, which they have. It only lasts for a split second, though, and then he stops mid-scream and says, "Oscar sticker". All is right with the world with a couple of stickers.

His blood results were confusing. We had doubled the dose of chemo since our last visit because his white cells had been too high. They aim to keep them at a certain level during maintenance treatment. This week they were even higher, despite the increase in chemo. I said to our Dr, "That's weird" and she said, "It is weird". This didn't make me feel any better. His white cells have never been this high since starting treatment. When he was diagnosed they were very high, the highest of any of the other kids I know who have leukemia so anything to do with high white cells scares the hell out of me.

Having said that, the Dr didn't freak out either. It was very hard to get any real read from her about what it meant but she said we will see how it is next time. So we wait......

You would think after 10 months of this waiting game that it would get easier but it doesn't. I remember one of the mum's who was 4 years ahead of us on the journey told me it never gets easier but you get better at dealing with how hard it is. You find distractions. So that is what I am trying to do - keep distracted, stay positive and I absolutely refuse to mention the 'r' word because I do not want to give it any power.

Waiting for bloods is a dance we will be doing every fortnight for the next two years and then every other month for five years after that. We aim to do it with a smile and a lot of gratitude in our hearts. That is not to say that we will always achieve this goal but it is important to remember that we are so, so, so lucky and we are reminded of that each time we visit clinic and see so many little kids going through such a hard time.

Take care and thanks for checking in on us. We know it is a long journey and we are grateful for your support.

Sunday, March 20, 2011

The Journey of Oscar's Central Line

On the day the kind Dr in Emergency at Westmead’s Children’s Hospital told me that Oscar had Leukaemia I was alone and scared. When Pete arrived I had to try and tell him the diagnosis and could not say more than “He has L...”. Over and over I repeated this without being able to complete the word Leukaemia out load.

It was a very long day spent trying to get a needle into Oscar’s collapsing veins – the nurses literally spent hours of the day making attempts at this. They must have been short on beds and they finally transferred us to the Camperdown Ward at around 9pm. We had arrived in Emergency more than 12 hours earlier thinking Oscar had an ear infection. What a strange and dark 12 hours of being bombarded with information about a disease that could take Oscar’s life.

When we got to the ward a nurse walked into the room carrying a doll with a strange contraption in its chest. She explained that this was a central line and that Oscar would need one to make it easier for them to take blood and administer chemo and other drugs to him over the coming months of treatment. She also told us that the central line would get ripped out at some stage and that this was all part of the journey.

I remember clearly wishing that she would shut up. I could not take any more information in that day and I did not want to hear about the emergency procedures for ensuring my son did not bleed out when he one day pulled out a central line he didn’t even have yet. I also remember thinking very strongly – that is not going to happen to Oscar.

Within 12 more hours Oscar had a central line in his chest. I remember the early morning run to the theatre, kissing him as they put him off to sleep, the first of many anxious waits for his return and the shock of how sick he looked and this new strange contraption in his chest.

We have come a long, long way since that day and on Wednesday 16th March Oscar’s central line was removed! He never did pull it out and I never had to sit on his chest and apply pressure while waiting for an ambulance. We were super vigilant and careful and it served us well for almost 9 months. Well done Oscar for treating it with such respect.

Aside from the miraculous fact that it has been instrumental in saving Oscar’s life it has taught him lots of new words like, “blood”, “flush”, “push”, “central line”, “medicine”, “cold”, “all done”, “all clean now” and “change dressing”. He can say all these things very clearly and is not backward in bossing the nurses about how it works.

So on Wednesday when he came out of surgery and I pointed out to him that it was gone he looked down, spread his arms out wide and said, “Oscar’s central line all gone”, and then promptly burst into tears. On waking the next day he did the same thing. He had become very attached to his special central line and liked walking around the house after bath pushing his chest out, showing off and saying, “Oscar’s central line”, over and over.

It is very emotional.

For all of us.

Thank you central line. You served us well and we are grateful for such a nifty invention and all the pain it saved us along the way.

Luckily, whenever we say goodbye to one thing we are always saying hello to another and I’m sure Oscar will completely forget how much he loved his central line when he discovers that he can now go swimming and have the freedom to play with water whenever he wants.

So, goodbye central line and hello our new friend ‘freedom’.

Thursday, March 10, 2011

Clinic Friday 11th March 2011

Today was one of those days in clinic that felt a bit like a war zone so I left there a bit shell shocked and very, very grateful that we didn't need to stay for a treatment. Oscar's blood results are dropping as expected but no adjustment to the medication levels yet. Probably in a few weeks time he will need a dosage change.

Oscar's central line has a blockage and possible split in the line. He is due to have it removed next Wednesday but if it starts leaking fluid in the next few days I'll have to take him in for an emergency removal. Here's hoping that doesn't happen. Can't wait, though, to get it removed, to be free of all the possible complications it can cause (although we will no doubt miss it each week when Oscar will have to have a needle instead). Swings and roundabouts.

That's all Oscar's news for now. Thanks again for checking in on us. :)

Thursday, March 3, 2011

Starting Maintenance Chemo

OK, we got the go ahead to start chemo tonight. Oscar will have a drug called Mercaptipurine every day for the next 18 months and, once a week, another drug called Methotrexate. Oscar toleratures the first drug well but you may remember Methotrexate is the drug that gave Oscar bad mucusitis, although, of course, this is a much lower dose.

There may be an adjustment period over the next couple of months, depending on how Oscar tolerates the drugs. We will be in clinic each week to check his bloods. In some cases the bloods can crash and there may be some hospital time involved but we are expecting Oscar to cope well with the medication and make the adjustment smoothly, as he tends to do. The Dr's aim, throughout maintenance, to keep his white blood cells between 2 and 3 and to ensure he doesn't become neutropenic (neutrophils need to be above 1) and adjust the dosage whenever there is variation from these goals.

Both drugs have to be given in the evening a minimum of 1 hour away from food and particularly dairy. For Oscar this means waking him an hour or so after he has gone to sleep, getting him to take the drug and then getting him back to sleep. Its always hard doing this, especially in the first week, but it will no doubt become a habit we all surrender to each day.

Oscar is also scheduled to have his central line removed on 16th March - this will be the most exciting thing to happen to him since diagnosis. To have his freedom back to swim and play with water as every toddler loves to do will be a joyous occasion.

As always, with each new phase of treatment the key is to surrender.

Sounds simple........... but then simple can be hard to find at times. Still, a good thing to aim for.

Surrender. Just be.

Have a great weekend.

Tuesday, March 1, 2011

Clinic Visit Friday 25th Feb 2011

Last Friday we visited clinic and Oscar's blood results showed that he is still neutropenic so he has not started maintenance chemo yet. Nothing to worry about, he is just fighting off a virus and it gives us another weeks reprieve on having to wake him at night to give him chemo. Once we start the chemo there will be an adjustment period, as with all new phases of treatment, and we may be required to go to clinic a little more frequently.

Even though we have been on hold now for almost a month it has been a very busy time. Auden has changed from preschool to a long daycare preschool so that we have more flexibility with hours, Pete has changed job site and is working longer hours 6 days a week, Oscar is busy recovering and we are trying to get him back on track with more 'normal' life and I am trying to get some basic things done for myself which haven't been done for years.

So this week I finally found a Dr nearby that I like (thanks Lisa and Debbie), and a much better physio who tells me that my ankle, which I injured on 3rd Jan, is a bad sprain and may take another couple of months to heal. He couldn't believe I had been walking around on it and it wasn't until he relieved some of the pain that I realised just how much pain I was in! (the mind is a very powerful thing!!!). Auden has had his second week in his new preschool and loves it (thanks again Lisa). Pete's been working and catching up with Iron Maiden friends and Oscar has been getting his head around having all the toys to himself without Auden.

All first little steps into the land of 'normal', with lots of wonderful rewards - like every time Oscar does some typical toddler play thing. It has been so many months of nothing but medication and procedures for him and any little bit of freedom he gets to enjoy just being and doing is a real miracle that melts my heart with gratitude.

So, my apologies for no updates lately but I have barely had the time and absolutely no ability to string two words together. Just processing, now that we are not consumed by treatment and trauma, merely processing for the first time.

We have also been devastated by news concerning my Aunt who has been diagnosed with a very similar disease to Leukemia and we are sending all our love to her entire family, who are very dear to my heart. I will respect her privacy and not use any names but I know that the great love and connection they have as a family will shine incredible strength around her.

One day at a time....thanks for checking in on us and keeping us in your thoughts and lots of love and light to all those people out there fighting the cancer fight. Remember - when everything else falls away you realise that the only thing that matters is LOVE. x

Friday, February 18, 2011

Finished Intensive Phase of Treatment!!

Oscar has officially finished his intensive phase of treatement. All his blood results show a great recovery so far except his neutrophils are very low (this is due to the fact that he is fighting off a virus Auden picked up at pre-school). Oscar was supposed to start maintenance chemo today but as his neutrophils are low we are delaying it another week.

I will know more about maintenance chemo once we start but basically we will be giving Oscar chemo every day for the next 18 months. It will be in tablet form so we can simply dissolve it in water and not so simply get Oscar to swallow it each day. We will still be visiting clinic weekly to keep track of his blood results and ensure he is on the right dosage and so on.

So we are in a time of transition. Auden is getting used to Pre-School, Oscar is recovering from treatment and adjusting to Auden's absence 2 days a week, Pete has been transferred to a new work site in Zetland and is working longer hours and we are all collectively adjusting to the change from living in 'survival' mode and trying to discover some idea of what a more 'normal' life is like. They say once you finish the intensive treatment you get a chance to stop and really comprehend the situation - which is a good thing - but to go easy on yourself because a lot of emotions may come up. That's what they tell us. We'll let you know how it goes.

In the mean time I would just like to say that we are incredibly grateful for all the love and support you have all sent our way to help us through. We couldn't have done it without all of you and there just simply aren't words enough to say thank you.

And - big cheers for Oscar. We are so proud of him. He has led us all through this journey with his incredible resilience, fiercly strong will and the ability to find joy in every moment of now. We are also very proud of Auden for being so loving and understanding throughout this time - he is wise beyond his years and has made it easier for me than it could have been.

Children are very resilient, always in the moment, not yet socialised to narrow their minds in any way and vastly intelligent, all-knowing little beings. We adults can learn a lot from them.

More updates soon...

Saturday, February 5, 2011

Another hospital stay

Oscar was vomiting relentlessly on Thursday so I headed into Emergency with him at about 7pm. He then spiked a temperature so we were in for the minimum 48 hours while they tested his blood for cultures and gave him fluids and antibiotics. His haemoglobin had also dropped and he needed a blood transfusion. Definitely made the right call taking him in.

There were no beds so we ended up spending about 18 hours in emergency. There are no facilities there and we were just in an isolation room without a bed to sleep on. It wasn't too bad though - I climbed up into Oscar's cot and slept as best I could cramped in with my feet sticking out through the bars. There was an eight and a half hour wait time in emergency (which is rare) and a lot of cranky people. We were tucked away in our little room in the eye of the storm but somehow detached from it. We don't have to wait as they usher us into isolation ASAP so Oscar doesn't pick up any of the germs.

We eventually went up to Variety Ward at 1pm the next day. We had our own room, which was good, but we had Oscar's CD player stolen, which was bad. I had bought a special calming CD with positive affirmations and nice sounds for him which he loved and it went with the player. I know the cleaner took it, I know when she took it and how she took it and her and her friend have a good scheme there. It's a shame the hospital care so little to find out what they are up to. I did tell the cleaner I know she took it and she just shrugged, as if to say, "yeah, but there's nothing you can do about it." The nurses told me it happens a lot and to just let security know. Security said to report it to the police as there is nothing the hospital can do. How about some security measures around how many cleaners enter your room, accountability for where they are and what they do?

Arg, it makes you lose faith in humanity. Still, if someone is stealing from a sick kid they must be very desperate indeed. Maybe they need the calming CD more than we do.

We arrived home Sunday. Oscar had completed his blood transfusion and the cultures were negative and as he hadn't had any more temps wo we were allowed home. Yay! Back to clinic Tuesday when he may need some platelets. He has two more nights of intense chemo and the Dr's say his bloods will take a big hit again this week. They expect him to be more his full healthy self in about 3-4 weeks. Then we start maintanence for 18 months. More about that later.

Thanks to everyone who keeps checking in on us and keeping us in your thoughts.

Wednesday, February 2, 2011

Update on clinic and brother love

Oscar had his lumber puncture today and he is in the middle of the last two weeks of intensive chemo treatment. He was listless and wouldn't drink his bottle tonight and had a temperature of 37.8 so I will be checking him two hourly tonight. The only time he has ever refused his bottle is when he had mucositis down his digestive tract - I am really hoping its not that again. Send him some healing thoughts, cross your fingers or whatever you can for him.

He was an absolute trooper in clinic today. When I took him into the treatment room to have his anesthetic the nurse said to him, "Hi Oscar, you want to come look at the fish". They have fish in a big fish tank there to distract the kids from whatever treatment they are about to endure. Oscar responded very clearly, "No thank you. I go home see brother." It made them laugh and the nurse said to the other people in the room, "No point trying to trick this one, he's smarter than all of us put together". She knows him well and always comments on how clever he is. Another nurse chimed in to say, "He is a phenomenal little boy. Always smiling no matter what terrible thing we do to him".

Yep, he sure is. Puts us all to shame and shows us how it should be done.

It was also interesting in clinic today as the Cure Our Kids representative, Sandy, was talking to the mums about a new booklet they have produced as a guide to family and friends on how they can help the parents and siblings of children with cancer. They have put this book together because almost all the mums have said that after diagnosis they are too shocked and confused to know what to say when people ask them how they can help and that this confusion continues through exhaustion and lack of sleep. One of the mum's who had finished the treatment cycles and was there for a check up said it is only now months later that she has been able to think of things people could have done to help. Every mum there admitted they had told people there was nothing they could do to help because they just couldn't think properly.

It's just impossible to describe how your brain functions and how simple, practical things are beyond you at many times throughout this process. I myself have had people openly ridicule me for not asking for more help, which only adds to the feeling of anguish that you are experiencing. How anyone can criticise you when you are in this situation is beyond comprehension to me but it is heartening to know that this is the same for other mums in my situation.

So if you are reading this and you have recently been diagnosed please ask about the booklet. It has great suggestions ranging from the obvious, like cooking, to mowing the lawn, doing the washing, taking some food into hospital as a treat and so on. It is always the little things that make the big difference.

Thanks to everyone who has been able to help in any way despite my inability to guide you in the right direction. Thanks to everyone who reads this blogs and keeps us in their thoughts. Again, it is these little things that make all the difference.

Finally, Auden had a special week this week as he started Pre-School. It is great for him to have some fun with friends and more normal activities to do. He loves it but is very, very tired and his only complaint is, "Why can't brother come to Pre School?"

Ah, brother love......

Monday, January 24, 2011

Home after 8 nights in hospital

We got home last night at 8.30pm after 8 nights in hospital. It had been one hell of a long day, having started at 6am with a nurse who felt compelled to go on and on about her back problem and how she shouldn't have to take blood from Oscar's line while he is sleeping because it hurts her back so much. She then insisted on changing his lines because they didn't have a hospital policy tap on them. I have never seen one of these taps in eight months so find it surprising that its a hospital policy (so do the other nursed on the ward). Still, I smiled and humored her. Oscar on the other hand did his best impersonation of a psychopath at her when she flipped him over on his back rather harshly and woke him too abruptly. He punched out and screamed and gave her a good piece of his mind and I silently cheered him on. I remind myself the key to this journey. Surrender.

I remind myself of this many, many times as our day went as follows:
  • Oscar gets woken unnecessarily at 6am to have his lines changed despite the fact that they had kept him up til 11pm changing his lines just the night before. On this same night we had been abruptly removed from our room of the previous 7 nights because Oscar was deemed well enough to be in a share room in another ward. I tell myself again and again. Surrender.
  • Oscar spent the morning screaming over and over from 6am "bottle" "food" "drink" as he was fasting in preparation for a lumber puncture. I responded to his desperate screams with highly ineffective distraction techniques and strategies. Surrender.
  • 10am and blood results show neutrophils not high enough for procedure to go ahead so I ask if I can start feeding him. They say yes. Oscar cheers and gets super excited. 10 minutes later, as Oscar is just about to start his first mouthful of yoghurt the nurse returns to tell us there is a change of plans and "the team" (meaning a bunch of invisible Dr's we haven't seen all week) wish to go ahead despite the low neutrophils. I'm not sure what this means and want someone to explain.
  • 11am Dr comes to explain its ok to go ahead as his neutrophils are on their way up and all other bloods good.
  • 11.15am a miracle occurs and the porter arrives to take us to surgery. We will also be having a 1 hour drip of chemo followed by 6 hour drip of fluid and they are supposed to start that before surgery (preferably as close to 6am as possible) but they forgot to order the chemo. Surrender.
  • Off to surgery and focus on the miracle of this early timing. Get to waiting room and the anesthetist wants to know why I don't have an accredited chemo nurse with me. No idea? Nurse who is with me runs away in direction of our ward. The Dr has a very long list of procedures to get through and can't wait any longer. We get wheeled into surgery and Dr finds out we don't have an accredited chemo nurse or an A1 (an essential piece of paper that tells Dr which chemo is going where and when). The Dr can't go ahead as is injecting said chemo into Oscar's spine during lumber puncture. Dr rings many different departments to chase A1 and nurse. Dr hangs up phone and says to me, " what is wrong with this place that I am chasing these things in the surgery room. I'm a Dr". I reply, "No idea but if you figure it out could you complain to the appropriate people" She replies, "I'd have to find them first". I smile. Surrender.
  • Meanwhile Oscar is freaking out. He knows the procedure. He has had more than a total of 16 surgeries in the last 8 months and he knows what happens and in what order and he is usually calm and happy but he knows there is something out of order and he doesn't appreciate it. He lets us all know. This is disappointing for me because if he goes down distressed, he wakes distressed. If he goes down calm, he wakes calm. We both prefer calm.
  • Eventually the Dr goes ahead without said A1 or accredited nurse but borrows someone from the next door theatre. I hold him as they give him the anesthetic, give him a kiss and say, "See you soon".
  • I am starving so I go to the cafe to get a meal. On my way there I pass a frazzled nurse who is running with Oscar's A1 in hand. I direct her to surgery room 7 and smile some more.
  • I always fast with Oscar because I can't possibly eat in front of him. All the mums do. I order my meal dizzy with hunger and anticipation. Wait. Wait some more. They realise they gave my order to someone else and are redoing it. My buzzer goes off and I have to be in recovery as Oscar is back. I leave, still hungry and rush off to Oscar. I find him distressed and still half out of it, a dead weight to hold and no muscle control of his neck but wants to be in my arms and screaming and rolling around like a jellyfish. I surrender.
  • We go back to the ward and the nurse is on lunch and I just want the drip to go up so we can get out of here at a decent hour. That doesn't happen. We leave at 7.40pm. Surrender.
  • Before this delayed departure a nurse visits to say she has been looking for Oscar's A1 for hours and couldn't arrange a nurse for Oscar's home care in the coming weeks until she found it. I tell her, "Last I saw it was in a nurses hands being run to surgery room 7" She hurries off muttering to herself. I laugh out loud.

The highlight of our day is a visit from Dad and Debbie, who get me fed, spoil Oscar and cheer him up so much he hasn't stopped talking about it.

The other highlight is getting home.


A special thanks to Dad, Debbie, Mum and Robyn for all visiting during our stay. Oscar talks non-stop about your visits when we are in there and it really lights up his day. Thanks to Mum also for keeping Auden smiling. Also, thanks to Lisa for visiting me at home and Matilda for your play date with Auden, who keeps asking when he can see you again. Finally, thanks to all of you for any help you have provided in any form - meals, kind thoughts, encouraging chats, texts etc. It keeps us going and we are lucky to have you.

Two more weeks to go of this intensive treatment!!!! More about that later. Got to run...

Monday, January 17, 2011

Minimum 7 days in hospital

We have just been told that we will be in hospital a minimum of another 7 days to treat the central line infection with antibiotics. They need to get it right as the line goes to his heart. So this is what we have to do.

His bloods are all good to go ahead with treatment except his neutrophils, which have been depleted from fighting the infection. They have booked him to go ahead Monday provided the neutrophils have recovered. We will still be in hospital so it means treatment will be in the ward rather than clinic, which is very disappointing as the clinic always do the lumber puncture by age. In the ward you might wait, and have to starve Oscar, until 5pm.

It is what it is and we will manage. The main thing is that Oscar is in good hands. Please keep us in your thoughts. Take care. x

In hospital

We were admitted to hospital on Sunday night - Oscar had a fever of 38.6. He has been in a lot of pain with stomach cramps, diarrhoea, vomiting and fevers. Today they have told us that he has a culture growing in his central line. Basically, there is infection in the line. This isn't great because once it happens once it tends to recur. The delay in final treatment isn't ideal either. Still, his bloods are good so overall the treatment is working. I am angry at myself though, after being so extremely careful with the line, and I let myself be talked into allowing him to play with water on these hot days. Anyway, can't do anything about it now but help him get better.

I also ran into one of the little girls who was about three weeks ahead of us. I was excited to see her to congratulate her on completing her treatment when her mother told me she has relapsed. This is very distressing. The only alternative they have is to try an experimental treatment of a new drug from America and hope she can get through the next couple of months, if so, she will have a bone marrow transplant. I feel overwhelmed for her and her family - to be so close to finishing and to be thrown into another even more dangerous journey. For privacy reasons I won't tell you there names but I am thinking of them all the time.

We are on Variety Ward. They have one nurse for every four patients. Camperdown has one for every two. So we are being patient and going with the flow. There are many people on the ward much sicker than us. We are grateful that Oscar is doing so well.

I hope to be out of hospital before the weekend and will update you then. Keep us in your thoughts and take care.

Sunday, January 9, 2011

Oscar needs your help please

Oscar's lumber puncture and treatment did not go ahead today as his blood results showed he has very little white cells, no neutrophils, low platelets etc. I was fully expecting this to happen as he has seemed very miserable the last week and they did make it clear to us that this would be a challenging time for him. He has also developed some eczema which results but we are focused on keeping him strong and healthy through the next week.

Next Monday we are rescheduled for the lumber puncture and intensive chemo. This will begin the final and most hard core two weeks of his entire treatment. They say he will lose his hair again and have some mouth ulcers and other side effects but we think he is so strong he will prove them all wrong.

He will need your help though. So please if you are reading this could you remember to send Oscar some love, light and healing thoughts every day over the next three weeks as he undergoes this final onslaught of heavy treatment. Ask the angels, archangels, fairies, universal wisdom, God, Goddess, Mother Nature - whoever you like, whatever you feel comfortable with. Please be specific and ask the following:

"Please give Oscar healing love and light and protect him from any possible side effects from his treatment, especially mouth ulcers. Please allow him to stay home with his loving family."

Or something similar.

Or just think loving thoughts frequently that are directed at Oscar if you prefer.

Scientific studies show that the energy of thoughts/prayers/love/light can heal and it is more powerful the more people who do it.

Oscar is open to receiver your love and says thank you and blesses each and every one of you for your help.

Saturday, January 8, 2011

That light at the end of the tunnel

Sorry I haven't updated you in so long. Oscar has been having his weekly chemo treatments throughout Christmas and the New Year and is doing extremely well. He was also on a strong steroid which changed his personality somewhat and has kept us busy and challenged with his teenage emotional outburst that at times have been violent and difficult to manage. In the last week he has withdrawn from the steroid which was increadibly challenging but the main thing is he has been healthy and whole throughout the treatment.

We are incredibly grateful not to have been in hospital over the holiday season when all the facilities such as the cafes are closed down and I can't imagine how hard it would be to survive in there without these basic facilities. To all those families who were in there for christmas I have no doubt the staff did something special for you and hope that it is the only Christmas you ever spend there. Thanks to all the staff and various charities who generously gave us a hamper and some Christmas presents for the boys. It made going to clinic during this time special and distracted us from the long waits.

Tomorrow Oscar has a lumber puncture followed by a 6 hour drip of chemo, provided his blood results are good to go. This is a hard day and Oscar has got to a stage where he is starting to try to pull the drips out of himself and challenging everything, including medication. I completely understand - he's been such a trooper. This is the last 6 hour drip so we will be pleased to get it finished and move on.

Please send us your loving thoughts filled with light and healing for tomorrow. Its a long day but we are getting closer and closer to the end of the intensive phase of treatment. Only two more weeks to go. Oscar is healthy and strong and we can see and feel the light that we have been desperately seeking at the end of that tunnel. I will ensure to update you tomorrow.

Thanks again to everyone for your support and we hope 2011 is a wonderful year for you and all your families.