Scott & Sunny

Scott & Sunny

Thursday, June 26, 2008

Get well soon Lorna.

A nice photo for my little sister who is sweating it out, again, in some African shanty town with malaria. What better excuse for a gin and tonic piss-up??!! (sorry Nana, I really am trying to watch my language but couldnt think of a better word).

Parasites destroying the red blood cells and having a whale of a time by the looks of it!...
All was well at clinic this morning. Scott’s anc was at 1700, a little lower than it has been in a while but closer to where the doctors want it to be. I wasn’t sure what to expect this week after the increase in methotrexate last week but was pleased to see his counts didn’t crash. Hopefully I’m not tempting fate and they will remain at a reasonable level. He also had his breathing treatment of pentadamine.

After clinic he had his quarterly dental visit which he was very anxious about but again we lucked out and he had no problems. No cavities!!! This is great news as chemo can be devastating on the teeth. His teeth were pretty manky so they got a good cleaning and more fluoride. They are also growing in a little wonky – wonder where he gets THAT from!! – and as soon as treatment is finished the dentist wants to get braces on them for about 9 months. They are also naturally quite yellow, which is a shame but not the end of the world so I was given a quote for whitening once the braces are off. The dentist warned me that it is expensive, about $300; I had to laugh and tell him that is what we pay for orapred ODT every 3 weeks. By the end of treatment we’ll have wracked up about $26,000 plus all the other little, and not so little, extras. But so be it, just so long as those ugly little cells never rear their heads again.

So all in all, a great day. We can breathe again for a few days.

I’ll leave you with a couple of photos, Derry and Springsteen and both of them and Jingle (and his floppy tongue) taking over my bed to watch Ghosthunters…. Did you see it Shel? … “There is no Jean here” … WOW! Considering our atheist existentialism we sure get sucked into that show. LOL.

Saturday, June 21, 2008

Just don't flashy thing us!

Guess where we were today? Here is a clue from M.I.B ...

First, they walk past a sort of passport control center, where a human BUREAUCRAT at a desk is checking the documents of a line of ALIENS who've just arrived. There are a dozen bizarre life forms in that line, CHATTING in half a dozen different alien tongues.

Yup, for the umpteenth time, we were bio metrically processed and fingerprinted. Of course I had my knickers in a twist and was sweating like an Arab so my clammy fingers wouldn't work on the fingerprinting device. The problem was resolved by dunking my fingers in alcohol. How embarrassing! In my anxiety and paranoia of authority I didn't realise until later that Scott had also had his fingers pressed down on the same filthy piece of equipment used by a multitude of the great unwashed. A day of 'fun with Ebola' at the CDC in Atlanta would have been safer.

There was a big sign indicating the threat level is at an okay-ish yellow, which is good news because we still haven't fixed the hole in our screen.

Friday, June 20, 2008


Scotty's counts were very high yesterday. His anc was 6200 due to the steroids. Whilst a steady high (normal for the average person) anc is good under most circumstances it is not what we are aiming for during leukemia treatment. Since our scare at Christmas Scott has had pretty consistent 'high end of low' counts. Therefore, chemo was increased yesterday to 125%. The goal is to keep the anc low but with just enough fight to ward off infection and to not give the leukemic cells an opportunity to flourish.

He has had a terrible week of pain and it still lingers. It does seem that with each cycle the pain gets worse and lasts longer. He keeps saying, "I cant do this anymore" yet he knows full well we just have to keep plodding onwards.

Due to the increased methotrexate yesterday he is having some 'tummy issues' he also has developed a bit of a cough/cold and said his chest feels 'rattly' (insert **Alarm bells** here!). Thankfully his anc is so high right now, however it will plunge in the coming days. I am watching his temperature closely, it is a little high but hasnt yet reached the dreaded 100.4. Due to our manic depressive nature we are pretty sure he will be admitted shortly before our planned trip to Camp Sunshine. We have spat in Fates face and insulted her mother, simply by hoping we could sneak away for a few days.

I dont want to write about Callum just now. I wouldnt even know where to begin. More than half my life was with him and we managed to cram in a hell of a lot of memories. From our beginning it was akin to a Shakespearean romantic-tragedy with so many twists and turns, continuing even after his days were cut short. He is gone and I dont like the way it feels. Scott is clinging to a tendril of hope that he's up 'there' on a drilling rig, a pouch of Drum in his back pocket and a nip of Grouse in his hand, "Grandad, now Dad, maybe God really does need a drill crew!!" Derry is silent.

Thanks for checking in.

Sunday, June 15, 2008

Well it’s late Saturday night. Scott seems in full-fledged steroid mode. Eating and grazing most of the time he’s awake. He’s also in stride with Vincristine pain as well. For some reason it seems worse and appears to come on quicker with each cycle. One doesn’t know if it is due to cumulative effect, or if the quicker onset is partially psychological. It doesn’t really matter, as it is miserable for him either way.

Tomorrow (or right now actually, as it’s after 1 in the morning) is Father’s Day here in the US. It’s impossible to think what thoughts may be going through the boy’s minds tomorrow. It is bad enough that virtually every other advertisement on TV this week seem to be hawking a “Father’s Day” sale somewhere. When they come on, we just sort of wait and see if any of us are going to crack up and become an emotional mess. Well, not become one as we all are, but do so outwardly. It is going to be a very tough day for sure. I’m not sure any of us are remotely aware of how to handle tomorrow. I know I’m not.

I ache for Scott and Derry. I don’t know what to say to them. I don’t know if being upbeat is the right way to handle it or commiserating with them is proper. It is a question of rhetoric actually. There is no right or wrong answer to that question. We’ll just get though it in whatever way we manage.

Battling this disease as a family makes you feel isolated. Yes, we have family that have done very nice and generous things for us. All of that is appreciated to no end. But watching a child plow through a treatment schedule like Scott’s results in us four feeling as we’ve been put out on some sort of island, with a hurricane that never ends battering the place. That analogy isn’t “fixable” by anyone. It is just simple fact. No one can imagine the constant stress and worry, nor would I ever expect or want someone to be made to understand it all. It is a dire, mean lonely ordeal for the family.

And now the boys are just that much more lonely with their dad gone.

Father’s Day.

I can’t help but think they’ve been cheated in some manner. I do what I can to fill a gap. But I also understand a parent is a parent, and it is nothing that can be replaced in that sense.

So today my wife and boys all have to deal with Father’s Day for the first time since their father’s have passed away. The latest squall in the storm.

Thursday, June 12, 2008

Just a quickie Thursday update here. Scott did fine at clinic from a "count-wise" perspective. Got all the wonderful poison to start his three-week cycle. Which means a severely emotional child with cancer, who just heard his dad died 3 days ago started steroids and all their side effects will come very soon. As will the pain from vincristine. So just attempt to imagine that and how bad it will be. Then when you have a mental picture, realize it will likely be several times that horrid.

That's it for today. None of us feel like saying much.

Monday, June 9, 2008

We've had many staggering blows in our household over the last 18 months. Today found us with another, on a scale I can't describe. There is no easy way to say this, but Derry and Scott's father - Calum - has passed away in Scotland.

I can't explain the sadness in their faces, nor that in Stephanie's. Just because two people were divorced doesn't mean they hate each other. Calum was the boy's father, and such a loss I can't even begin to imagine. Scott is very weepy and emotional. Derry, as always, is keeping things bottled up and this bothers Stephanie and I.

I simply do not know how to explain such a thing to the boys. At the age of 42 I'm lucky to have not lost a parent. As you know, Stephanie just lost her dad 6 months ago as well. We don't know how a child at 11 or 13 copes with this mentally. It's unchartered territory on all fronts.

Mentally, we are all simply exhausted. Beaten down. That's all I can write tonight. Bed awaits us all.

Saturday, June 7, 2008

Well, Scott and I got over our little stiff neck problem although the rest of me still feels a bit creaky but och well, I’m sure it will pass. I was just a bit worried as I had been briefly exposed to someone with viral meningitis. I guess it was just some weird coincidence. Or paranoia.

Scott is doing well and seems happier than he has since diagnosis. He has more energy than ever, is eating well and looks great. Perhaps the happy pills finally kicked in, I dunno, but it’s all good nonetheless. Tomorrow I am desperately hoping to get him a haircut but we’ll see what kind of mood he wakes up in. He is also being very loving and emotional. Today he said to Derry, “I love you big brother”. I was gob smacked, as was Derry. He replied, “Stop being such a poof”, but I know he was touched and will probably never forget it. Me neither.

Today we had Derry’s last game of the spring season, sadly they lost but it was an interesting game, lots of tension and a few fists being thrown, a perfect hockey game. He will be attending some intensive training over the summer and also a required course on ‘checking’ (how to legally hurt someone on the opposing team). He is looking forward to that A LOT!!

Derrys friend, DJ, in the penalty box after nearly starting a riot!! ...

Team portrait ...

Also today my kind and generous and fabulous husband treated me to something I have been pining, whining and yearning for … a brand new bike. It is a beauty. I have been going out a lot in the evenings, just riding around for an hour or so, but my old bike had seen better days and finally developed a bad case of rust and an embarrassing squeak. I am a spoiled brat, it is awesome …

I shall leave you with a song that had my crying my eyes out earlier. My friend wrote about it and how it was played at her little boy’s funeral. I’m welling up again so here it is … For Zach ...

Friday, June 6, 2008

Pain the the neck/back.

Stephanie is suffering from a very painful back and neck and basically most things from the waist up for the last couple of days. So we're a bit late on a clinic update for the week. Scott's counts were above the mandated level and he received his methatrexate yesterday. That's all he has this week. Except he's gotten a sore neck today it appears. Have to keep an eye on those two for sure.

Scott has become a swimming monster. Even yesterday after he got home from clinic he hopped in the pool - 3 times. He just swims end to end continuosly. We aren't sure how he does it, because he just seems as if it is an obsession. This has made him much more active than anytime previous in his treatment. Which is good! It helps his body recover faster, making that marrow work in high gear. Last night he seemed in a bit of a mood and headed out to the pool instead of a bedroom. We went out and watched him splash from end to end dozens of times and I asked him if it made him feel better. His answer was "No. It helps with stress though". Being just about 12 and having to know how to handle stress is just wrong.

National Flip Flop Day

Click that link there and you'll be off to the Nation Flip Flop Day website. This is a promotion done by Tropical Smoothie Cafe to benefit Camp Sunshine. Flip Flop day is June 21. The first 500 folks arriving in flip flops at all Tropical Smoothie Cafe's that day will get a free 24-oz Jetty Punch (strawberry/banana) smoothie. Camp Sunshine in Casco, Maine just happens to be where we're off to in a few weeks. Tropical Smoothie Cafe is a big part of that, as they have entered into a national partnership with Camp Sunshine, and the Brandon location is actually sponsoring our trip to the camp. This is something we simply could not be able to do without their generous help and involvement. So I shall shamelessly encourage you to stop by the closest location and enjoy a REAL fruit smoothie - not some of those contrived things from concentrate at most smoothie shops.

Off we go to Derry's first weekend since school ended. He got out after a half-day on Wednesday and had Scott completely tired of his existence about an hour after he got home. Should be a lovely, long summer!

Tuesday, June 3, 2008

Just another day and a bit and it will be Thursday again. Oh joy! God I hate Thursdays.

Scott is feeling pretty good. He’s starting to venture out a little more often into the pool and manages to swim a little further every day. It has been up into the mid 90’s here … crazy hot … 7th circle of hell hot. The only problem is the water is making him very itchy and very tired. I just hope that it IS the exercise and nothing more that is tiring him out. He is also starting to get a little colour on his skin and his hair is almost down to the bottom of his neck. It’s a bloody mess but he will not let us have it cut. Well he will, but there are conditions. Either highlights or green tips!! I called a couple of hair salons and got the response I was expecting, bleaching or colouring are NOT a good idea whilst there is chemo in his hair. He also wants his eyebrow pierced. We did ask the lovely Dr Rossbach last week and he said ‘sure, but make sure your counts are good’, but we weren’t sure if he was joking or not. He has a very wry sense of humour!! Anyhow as cool as I think he would look with green hair and a pierced eyebrow I think he’s going to have to wait a couple of years and just go with whatever mutilation is the current trend.

I managed to quit for 23 hours and as soon as I was out of the house smoked four in a row. I am such a loser. Since then I am managing on 5 a day but I’m compensating by still chugging down the spirulina slime and other natural goodies. David and Derry are still geeks and escape to their fantastical and virtual worlds each night. Scott and I have renamed them Sitting Down and Talking Bollocks – traditional Native American names (perhaps?) and well deserved.

That’s about it. Please wish us well for Thursday, I am a basket case and every week it gets harder and harder. We have lost too many children recently and so many are struggling. This is a living nightmare, it really is. I miss the children who didnt make it very much and I am so scared.

Take care and thanks for checking in.