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.

Are we there yet?

Sorry for the lack of updates lately but we have had a crazy busy time with hospital stays, Oscar's 2nd birthday, more hospital stays and Auden's 3rd birthday. We are just starting to get back to a slightly more normal life and I finally have a minute to explain where we are up to on this journey.

Oscar has completed the fourth and final methotrexate 24 hour drip (hooray!) and once again got mucusitis and had to go back in to hospital to be put on a drip and given pain medication. He has recovered very quickly though and yesterday in clinic his blood results were so good that they are going to move his bone marrow aspiration forward to tomorrow (he was booked for Monday). This is good news in that he has recovered so well and we can keep moving forward but it does mean we miss out on our two week break we had been looking forward to. Still, the quicker we start the quicker we finish.

So Oscar is fasting from midnight tonight and we are back in clinic tomorrow for the bone marrow aspiration. Monday we go back to clinic again and start the next phase of treatment which we have been advised is the toughest phase for most children. Its a complicated mix of steroids and many different chemo treatments - similar to the beginning phase. We will be monitoring Oscar's blood pressure in clinic as he may get high blood pressure again from the steroid (it is a different steroid this time but apparently stronger). Basically, he will be bombarded by very strong drugs in a specific protocol and due to the fact that his body has been through so much already it can be a very tough couple of months. There are no scheduled hospital stays but most children have at least one or two trips to emergency and stays during this time.

That's what they tell us but we feel positive Oscar will manage to get through it without too much trouble as he has proven time and time again to bounce back quickly. There are some chemo treatments that give mouth ulcers but not as severely as the methotrexate. There will be a lot of time spent in clinic waiting and having treatment but we get to sleep at home every night (not that sleep is likely but still). Oscar will be waking all through the night to eat due to the steroid making him so hungry but we have been through it before and know what to do.

This is the last two months of intensive treatment and all I could say to our Oncologist yesterday was: "Are we there yet?" She laughed and said anything can happen but your getting there.

Wish us luck tomorrow and thanks for all your kind messages and support. It means the world to us. x

Hospital - take two

OK, Oscar's platelets have dramatically increased from 30 to 170, which they find unusual and think it is possible the blood result on Sunday night was incorrect and that we may have been able to go ahead on Sunday after all. I am going to choose to disregard that information because it doesn't help in any way - it just makes me want to bang my head on the wall. No point in that so we are heading in tonight with a positive feeling that this is our last one of these treatments and looking forward to having a good experience and getting home ASAP and then staying there.

I'll give you an update when we get back. We head in at 7.30pm, which is a total nightmare for Oscar and I timewise but it is definately the last time we will be doing this particular dance. Must go, repack, cook, load the car up and head out. Wish us luck.

The Roller Coaster Goes up for Oscar's Birthday - and then comes crashing back down again

Friday Oscar's blood results were good and we were booked in for admission on Sunday night, provided there was a bed. We were warned that the bed situation was worse and to expect a few days delay.

Saturday Oscar turns 2 and we have a wonderful day with visits from Nana and Roby (puppy), balloons, cake and a visit to the Koala Park where the boys got to feed kangaroos and pat a koala. (I will put photo's up when I get a chance)

Sunday we head out to visit my Dad - we haven't been to his house since he moved in around January and Pete has never been there so I was keen to catch up with them. Of course, we get there and get a call from the hospital at 10am asking if Oscar has a runny nose as they are sorting a bed out for him. So we race home, pack our bags, get told we have a bed and go in at 4.30pm for the final round of this treatment. Hooray!

On the way to the hospital Oscar is hysterical. He knows where we are going and this time he really is putting up a strong protest. He is screaming, saying, "Mummy, cuddle, scared, no, other way, home, Daddy, brother." and this mantra is repeated over and over until he is so hysterical he is turning purple in the face and dry retching. I'm stuck and can't pull over to help him and have to just keep trying to talk him down. Finally, I am able to pull over but I can't get him to stop dry retching. At the hospital I physically cannot get him in the pram. He is so strong and arching his back and screaming at me to go home. I have to just sit with him and cuddle him for what seems a long time and then have to carry him in, pushing our pram and luggage. We arrive and the nurse messes around with Oscar for an hour and a half, overstimulating him until he is psychotically charging up and down his cot. It takes me three hours to settle him.

Ah, I get my coach bed made up and fall asleep. An hour later, at about 10.30pm, a nurse wakes me to tell me that Oscar's blood results show his platelets have dropped dramatically and they can't go ahead with the treatment. She says I should go home and come back into clinic on Wednesday to start the whole process again. His platelets either will naturally recover or he will need a platelet transfusion. Oscar has only been asleep an hour and after how upset he was I can't bring myself to wake him so I ask if it is ok if we stay overnight and leave when he wakes. I also don't want to go out to the carpark on my own in the middle of the night as its not the nicest of places. So it is that we have a sleep over in hospital except I can't go back to sleep. So I repack all our belongings, get a cup of tea, read a number of magazines, do my meditation tape three times, finally drift off for an hour and Oscar wakes at 7am and we go home.

Poor little Oscar. He just keeps getting kicked in the teeth again and again.

On the bright side we were very lucky to get to be home to celebrate Oscar's birthday and it was a great day. Also, Auden was overjoyed we were back so soon (although we will have to do the whole separation dance again later in the week) and Oscar gets some more time for the ulcers in his mouth to heal before they hit him again with the chemo. Mum raced down from Armidale for no reason and I missed out on yet another nights sleep but at least we found out before they accidentally went ahead with the treatment.

So we keep riding the rollercoaster and find a way to stay positive amidst the sleep deprivation and chaotic disappointments. Hopefully we will be in hospital later in the week and Oscar will be treated and recover before Auden's birthday on the 27th. Finger and toes crossed. x