19th Jan 2012 Clinic Visit

We just arrived home from Oscar's visit and I have a quick minute to update you. Bloods have improved:

Hb: 12
WCC: 3.0 (target for maintenance is between 2 - 3)
Neut: 1.6
Plts: 229

Dr Margaret was happy, as always, to see us and does not want Oscar having any surgery until after he has completed chemo and recovered from it (a minimum of 2 months after completion). There is too much risk of infection and with his suppressed immune system they would only allow surgery if it was critical.

It has also been explained to me many times that it takes about 6 months for recovery from chemo - for the taste buds to return to normal, the bloods to adjust etc. So, my gut feeling is we should wait until 6 months after he finishes chemo in June this year, have a chemo-free, care-free Xmas and then do it early next year. That's the thought I will be sending out to the universe so feel free to join me. In the mean time, I need to go back to the Paediatric Urologist to tell him and get the other tests done to check how his kidneys are coping.

All in all it was a good visit. We are changing back to Wednesday visits which means Auden will be in Pre School. Dr Margaret was sad and said I absolutely have to bring Auden sometimes as she loves seeing him growing up. Bless her.

Thanks again for checking in on us and I hope you are all travelling well on your own journeys. Take care of each other - love heals - and take care of yourselves too. x

5th Jan 2012 Clinic Visit

We visited clinic on 5th January and Oscar's bloods had gone up. For those interested in the numbers:

Hb: 129
WCC: 4.4 (target on maintenance is between 2 and 3)
Neut: 2.5
Plts: 170

We aren't sure why they went up but have increased his chemo to get them back down towards the desired target. All is well.

We also visited the Paediatric Urologist on 12th Jan, who confirmed that Oscar will need to have a circumcision and a nuclear test to check how his kidneys are doing. Recent studies show that ongoing antibiotic treatment only reduces the incident of urine infection by 6%, whereas circumcision is almost always successful at eliminating them. In the past we did not want to go down this road and perhaps that wrong decision has contributed to his journey so far so we are going to move forward and get it done. There is a 1 in 20 chance that he will need a second operation because his penis may open as a result of the circumcision and this would mean he would wee over the toilet at a funny angle so they would operate to remedy that if it occurred, which we doubt. Finally, he may need another operation down the track, once we have identified if his reflux has fixed itself. If the valve in his urinary system is still not healed they may need to do a further, more invasive surgery to remedy that - again, we will cross that bridge if it presents itself along the pathway that is his journey.

It is an exciting year for Oscar as he starts Pre-School and he will also finish his chemo treatment in about June or July - both important milestones for him. He is certainly growing up by the minute and making a mark for himself in all that he says, does and shares with all of us. Auden is excited that his brother is going to be at Pre-School with him and can't wait to get back there. All in all 2012 is likely to be a fantastic journey for both of them.

I took the boys away for a holiday at a friends house and only just arrived back yesterday and it was a wonderful gift of kindness and generosity of spirit that really helped me and the boys had so much fun playing with the big boys, staying up very late and generally enjoying the freedom of new adventures. Thank you to the special person who made it happen and gave me a feeling of safety and sanctuary when I needed it.

Life is good. May 2012 bring you the healing, love, light and the listening, respectful heart of fellow travellers on this journey of life. We are all human, full of frailty, faults and fears as well as strength, courage and compassion - may we accept this truth, respect our differences, listen to each others stories, hold each others hand and unite in the knowledge that we are all one.

Thanks for checking in on us. x

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.

x

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

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.

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.

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