Doing well

Oscar is doing very well on the steroids. No high blood pressure and still sleeping relatively well. Today the Dr said he deserved it after how hard he was hit with the previous steroid and then the methotrexate. She thinks he is pure delight and I can't disagree there.

Also, his recent bone marrow was clear. Hooray for Oscar. His little body is doing everything it should and his huge spirit is unphased and full of light and love. He seems to spread it everywhere but no more than in clinic. They all just adore him which makes the experience more enjoyable for everyone.

Thanks again for following Oscar's journey and for keeping us in your thoughts. We are feeling positive that we will be home for Xmas but I'll let you know how it goes.

Articulation Attempt

If only I could
Spare you
This pain
Lift you up and out
Of this
Scary place
We now call home

If I could just
Take it all away
Give you
Freedom
Toddlerhood without unspeakable
Trauma

1,456 syringes of medicine
In 182 days
I have tricked and terrorised you into
Swallowing
And more to come
Always more

I can’t stop it
Hide it
Deny it
Nor run away with you

I can’t give in
To your screams
Of protest
At times
So desperate and grim

All I can do
Is love you
Like it's a mental disease
Love you
With hugs, kisses and late night vigils’
With words sung
Like lullabies on the wind
Of your soul
Whispering

And I can
Hold this space
Look you in the eye
Share the burden
Of your truth

I can stand up
Sit down and crawl
For you
And silence those
Who deny
And be your voice against those
Who squash
Your needs
For their “shoulds”
And remind the numbers
That you are human

Humanity itself being heard

No one knows
Not even I
Who have journeyed with you
And held your eye

Only you
Know
The light that illuminates
Your star

You shine
And grow
And continue
To smile

If only I could
Make the hurt disappear

But I can
Love you

I can
Daddy can
Brother can
You can
We can
LOVE

Clinic Update

Last Wednesday Oscar had an echo cardiogram and his heart was given the all clear to go ahead with treatment. They needed to check his heart before he started one of the chemo's, Doxorubicin, which can cause heart damage. After two doses of this they will check his heart again so he is having another echo on 22nd December.

So today he started the following chemo:

• Doxorubicin - it destroys cancer cells by interfering with the cancer cells growth cycle. It is administered through his central line and takes about an hour. Possible side effects are nausea/vomiting, hair loss, low blood counts, mouth sores, heart damage, nail damage and the skin may be more sensitive to sunlight.
• Asparaginase - destroys cancer cells by interfering with their growth. Oscar has had this before and it is administered by a needle into the muscle in his bottom. The needle hurts obviously but the drug itself also stings as it is absorbed into his system. Possible side effects include loss of appetite, abnormal liver and pancreatic function tests, high blood sugar, drowsiness, headache.
• Vincristine - also destroys cancer cells and Oscar has had it before. It makes him severely constipated no matter how many drugs you give him to help him poo. It is administered through his central line and takes about an hour. Other possible side effects include stomach pain, hair loss, irritation of nerves: numbness and tingling of fingers and toes, muscle weakness, jaw pain and rarely seizures.

He is one week into take the steroid, which is called Dexamethasone, and has not developed high blood pressure. Hooray! It is a hormone similar to hormones made in the body that may kill some cancer cells and increase the effectiveness of other anti-cancer medicines. It is given orally three times a day and is causing us a lot of grief as it stinks and tastes terrible and Oscar will not take it. After much effort getting it in he spits it back at me. I've tried every trick known to man and wasted almost a full bottle just in attempts to get him to tolerate it. We eventually get there but he is strong and I have to force it on him which makes me realise how lucky I am that he has been so good with all the other medications. On top of that it has turned him off taking any of the other medications he has been taking well. So medication time isn't much fun for anyone but aside from that he is doing well.

Friday we go back to clinic just to have one of the above chemo's - asparaginase - then Monday we have the full three listed above, then Thursday just the asparaginase and so on for a few weeks. Clinic is closed on the public holidays and reopens for the new business day with a backlog of treatments so we will adjust his treatment according to when they can do it.

That's all for now. Take care and I'll update again when I can.

Day 1 Steroid

We have been struggling with very little sleep (I have had about 5 hours over the last three nights collectively) and just getting by. This is no different really to the last 5 months, except that it has an accumulative effect over that 5 months. So I am just getting by, putting one foot in front of the other and trying to sleep any moment I can.

The sleep deprivation is likely to get even more challenging as Oscar started the steroid today. The Dr's generally try to talk things up and keep positive so when they tell you its going to be a hard couple of months they usually really mean it. Day 1 on the steroid and Oscar is already violent, angry and full of mood swings. I physically could not hold him down to get a nappy and clothes on him this evening, he was that strong and angry. He swings from wanting something to throwing at you in a split second, then wants it again.

Of course, this is the journey and all I can do is go with it and somehow keep calm and focus on what I can change or help and let go of the stuff that is just out of control. Auden is also waking with nightmares and very unsettled so it is all starting to take its toll on all of us now.

So if we haven't rung you or have dropped out of touch its just because we are just barely hanging on right now. No doubt it will pass so hang in there with us. I will update you on Oscar's status later this week. Send us your positive calming vibes please and take care. x

A New Anesthetic Makes Oscar Smile

Oscar's bone marrow aspiration went well today. He was first at 10am (a record for clinic) and they tried out a new anesthetic that didn't knock him out as much. It was brilliant. He woke up laughing and smiling. Can't wish for better than that!

Auden came along today and thinks hospital is the greatest place on earth. He played with the fantastic train set in the play room in Clinic and then I took him to have a milk shake and run around outside at the amazing kids playground. Then back up to clinic to watch a movie while waiting for Oscar to wake. Oscar seemed to love having him there as well.

All in all it was a great day. We start the steroid on Monday. More about that later - I am trying not to think about it until I have to. Thanks again to everyone for messaging and keeping up with us on this journey.