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Friday, April 27, 2012

Update - yukky needles, nice nurses, angels, volunteers, pirate play and clowns - such a rich tapestry of moments

I am very slack with posts lately as I just haven't had the heart to write about the same old thing (even if it is still very precious to us in this household).

So, I will keep the update brief. Oscar's bloods have consistently been higher than the target for maintenance and they cannot increase his methotrexate dose as his liver function test shows his body cannot cope with any more. So we have increased his other chemo drug and hope that will do the job. This week his white blood cells had come down ever so slightly but heading in the right direction. At the end of the day though there is nothing to say that any of this is either "bad" or "good" - just outside the target that statistically has been successful with other patients over time. We are used to this uncertainty and I choose to think that unless otherwise told all is well with our gorgeous little man despite whatever the statistics say.

He is growing up and I promise to get some photo's on here soon when I get a chance. The last few visits he has been upset by his blood test and yesterday I had trouble getting him in the room. Auden was with us and Oscar screamed the whole time. The look on Auden's face said so much that the nurse had tears in her eyes and said to me, "I can't watch his little face. It must be torture for you." This particular nurse is always so upbeat I was completely thrown. Dr Margaret, bless her cotton sox, came in and gave Auden a hug and took him away for me. She is like an angel always watching over us when she has so, so many to watch over and we have the very least in demands medically these days. How to say thank you.......

We were also showered with the generosity of some lovely lady who hand stitches small bedspreads for children with cancer and Auden and Oscar both got one. Auden put his on his bed as soon as he got home, so proud and happy with it. Also, the Clown Dr made them both balloon swords and we headed out to the fantastic park with the boat on hospital grounds and Auden and Oscar were pirates singing their pirate song (the theme from 'Jake and the Neverland Pirates'). The real Wiggles were also at the Oncology clinic but Oscar hadn't had his blood test yet so was too nervous and distracted to care. Auden thought it was exciting though. Thank you to the generous souls who volunteer their time at the hospital to find ways to show they care and to make our children smile.

There are so many little and big things on this journey that bubble along under the surface of a family and make it richer in both challenging and wonderful ways. Just like everyone's journey really but with the volume turned up from time to time. Sometimes now we forget that the expectations one might "normally" have are no longer relevant and it takes your mind some time to catch up with what is realistic in your particular circumstances. Auden said to me today, "Mummy, how can we make Oscar happy?". To which I explained that he is happy but he just cries excessively sometimes because he gets tired. The reality is he has huge mood swings that change from instant to instant and there is a ferocity to them that is scary sometimes but that overall he is a very happy camper. Soon, his hospital visits will be less frequent and hopefully he will finish chemo and have the opportunity to shine for who he is without medical intervention.

His bone marrow biopsy and lumbar puncture are booked for the 28th June and if the results are good he will get to finish chemo. Deep breaths. We crawl closer..

We also had the joy of visiting with one of his little friends from hospital who is due to finish a month after us and who started her first day of school this week. How divine it is to see them play together outside in the big world beyond hospital. They have really shown us how to embrace the moments.

Thanks for checking in on us. I wish you and your families much love and healing. x

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