Scott & Sunny

Scott & Sunny

Thursday, July 24, 2008

One step forward, three weeks back ...

We have been in Florida for nearly 4 years now and finally it is starting to dawn on Scott that flip-flops are a great invention. However he still hasn’t got the hang of how to walk in them and so today, within seconds of walking into clinic, he tumbled head over heels and twisted, fractured or broke his ankle. The jury is still out but he was sent for x-rays and I’m guessing the fact that they haven’t called me yet with results mean nothing major is showing up. It was, and still is, causing him a lot of pain though and the doc was keen to do x-rays as his bones could be in a bad way after all the treatment he has received. Steroids can lead to a loss of bone density; basically his bones could resemble those of a 60 year old woman! The oncologist will let me know next week if his bones have been affected. Obviously we are hoping that this is not the case.

As for his lovely blood, well all looked good again so he downed another shot of methotrexate. His anc was still a little high at 1750 which may mean yet another chemo increase in weeks to come. This would not be good for his stomach but would pack a little extra punch against any remaining leukemia cells. His platelets were normal at 266. This is the number I keep a very close eye on as platelets are very often the first to drop when something sinister is going on.

I was kind of disheartened to learn that I am ahead of myself on our protocol. I was only off by three weeks but three weeks is a long damn time when you are living this nightmare. I just want to get to the end and start putting some distance between us and cancer. Our obvious fear is the ‘r’ word. Half of all t-cell (POG 9404) relapses occur before week 62 (we are at 72 but it was been 78 weeks since diagnosis – yes today marks 18 months since we got hit by the bloody cancer bullet – a day that I have never yet written about and probably never will) the rest occurring from week 63 to several years later. Having said that, relapse would be unusual after a remission of three years. That is still 80 weeks from now though, a long way off. Yet even when we do finally stumble down in relief and mercy at the hallowed gates of remission, I doubt I will find true comfort there. The worry is here to stay.

I wanted to end on a happy thought but couldn’t think of one so instead I’ll just say that it seems poor Scotty may be about to lose his hair again. No big deal in the grand scheme of things but Scott is obviously scunnered about it. Me too. It’s so nice being able to leave the house lately and not have people stop and stare or give looks of pity. More importantly I can look at him now and not see cancer. Baldness is just so in your face.

Thanks for stopping by and checking on my boy.


christine said...

How can Scott be so unfortunate - hope his ankle is not broken - I twisted mine quite badly about 5 months ago and it still isn't right, so hope his repairs quicker than that! And yes - tell him - flip flpos are still a good idea - couldn't live without them.

And I love the lions face - sometimes we all feel like that.
hugs and kisses

Logan said...

Hi! Stephanie! Oh! My Gosh! Poor Scott! I am so sorry to read that he injured his ankle! I hope it is NOT broken or fractured and I sure hope he in the mend very soon!

So glad to read Scott's counts are good! Always good news and a relief! :)

I am sorry that you guys have a bit longer in treatment than you thought! If it helps any, we'll be right along side you guys! :) :) I cant wait until our kiddo's are done with treatment! Sure~ the fear will never go away but it will be SOOOO nice when we no longer have to worry about the weekly chemo and all that comes along with treatment!

I have switched over to a new journal! I did not care for the newer caringbridge page so I made the switch again! I sent you an email but I dont think it went through! Can you send me an email at and I will give you the new link?

Take care you guys!
April Molle

Shawn said...

OUCH! I am finally completely recovered from a BAD sprain 7 weeks ago. Poor little guy!

Would a trip for some Ice Cream (on the Angle Program of course) make things feel bette? I can always use an excuse for ice cream, if you are feeling up to the trip let me know and my girls and I will meet you there!

Take care,

Ben32113 said...

No news is usually good news in the medical field. Does Scott currenyly take any calcium with vitamin D supplements or cholecalciferol 50,000 units monthly, this medication is an Rx. If he isn't currently on any medications of this kind, I'd ask the doc if he could benefit from them. Hopefully it's only a sprain!