Scott & Sunny

Scott & Sunny

Monday, July 7, 2008

Due to last weeks festivities we had clinic today. Next week we will go on Tuesday and the following week we will get back to our regular Thursday appointment.

It was a little worrying going for 11 days between clinic visits and delaying chemo but the doctors had said all would be fine, and thankfully it was. His anc was 2200, platelets 250 and biliruben at 1.1, well within normal to go ahead with the full dose of vincristine, methotrexate, 6mp and orapred.

One thing I don’t think I have mentioned before is the placing of Scott’s port. It looks kind of normal but it is actually situated in a dip in his chest and requires very precise positioning of his body prior to access otherwise it just wont work. Last time he was accessed was painful and tricky and again today it took the nurse a little time and patience and thankfully ended with success but with Scott in floods of tears. I was told that as he is putting on weight it just sinks lower and lower into his chest. It may not sound like a big deal in the grand scheme of things, and the worst case scenario would be a new port placement, but it is certainly upsetting for Scott. He can cope with puke, with blood, with all manner of things, but he HATES his port and anyone having to touch it. Any poking and prodding more than absolutely necessary makes for a very miserable child.

Today marked the start of our final ‘trimester’. He has been through 24 cycles and has 12 to go. A milestone of sorts but does nothing to ease our anxieties. 52 weeks ago was Derry’s birthday and was one almighty bitch of a day. Scott was going through cranial radiation; he was very sick, he was bald as a coot and had just been told the spots on his bum were in fact shingles. I was in full scale panic mode not realizing shingles were highly treatable and no big deal, I also had conjunctivitis and wasn’t allowed on the ward. Thankfully my Mum was here and saved the day. I would like to allow myself to think that we are moving forward and the worst is history but it doesn’t always work that way when you are dealing with leukemia. It can rear back up at any time and bite you hard on the arse. I would like to see the light at the end of the tunnel but with all that our friends have gone through lately, and with all that I see, it still seems like a very bleak situation indeed.

12 cycles to go. 36 weeks, if all goes according to plan. We let Scott out of his bubble last week and so far so good. It’s time to batten down the hatches again and ride out the rest of the storm.


Dawn said...

Hi Steph,

If you need to batten down the hatches, just do it. Scott's obviously doing just great at the moment but keep focused on the end result.

The photo's of Camp Sunshine look fantastic. And, strangely, so does Scott in a tutu!! Looks like you all had so much fun. Great to see.

Lots of love,

christine said...

Hi All
Glad to mark any milestone on Scotts treatment - can we hope it's all downhill from here? I know anything can happen but I for one am going to think positive.
Will be in touch for Derry's big day and lets - as you say - hope it is better than last year!
Love to everyon

nina said...

Hi Stephanie,
glad to hear you all had fun at camp sunshine. it all looks lovely!!
Here's wishing that the rest of Scott's protocol goes without incident, day by day, he's proving he's a tough boy.
Happy Birthday to Derry!