For the second consecutive day the sun is shining in our little corner of Florida. We have had endless days of grey skies and rain, rain and more rain, which only the weeds in my snake-pit of a garden seem to enjoy.
We want to go somewhere and do something, we have cabin fever and if we don’t get out sometime soon the next catastrophe in our lives could end up being familicide. It could get ugly. Who will snap first is the million dollar question. We have all the comforts of a 21st century life. A jumbo TV, a PS3 (PS2 and PSP), an Xbox360, computers, toys and games galore, we had a Wii but it sucked so we sold it, we even have a pool. I am so bored I even made breakfast this morning.
We are not terribly exciting people it has to be said, all we want is a little freedom, fresh air and ice-cream. But it would now seem that we are stranded. The cumulative effect of chemo and the recent increased doses are wreaking havoc on Scott’s guts. The poor kid is suffering through one day after another with what Activia term so nicely “irregularity’ – LOL. I won’t go into graphic detail, I am sure you get the idea. He is miserable, sore, uncomfortable and very, very pissed off with this whole ordeal. He no longer wants to swim or walk with me in the evenings, it seems he is hunkering down, doing his time, and waiting for this to pass.
I pray (and I use that term loosely) that in just over 8 months this will be over and his body can slowly but surely start to release all the toxins, recover and heal. I know that I shouldn’t be whining and should be grateful he is home rather than in a hospital bed, and yes I am relieved, but even when things are going ‘well’, for most children this is still a cruel and nasty disease to treat.
I wrote a few weeks ago that we would be battening down the hatches, we have and we are, it would just be nice to come up for a little air once in a while.
As I was writing this Scott managed to find his harmonica, oh dear, it’s going to be a looooonnng day!

The joy of gardening in Florida...

I quit.

Just a quick update. I'm tired and I need to sleep. Had a horrible dream last night about my sister, woke up, too scared to open my eyes, and too scared to go back to sleep again. She was the grim reaper and had come to take my soul, armed with a broom instead of a scythe!! I screamed and screamed, but no sound came out. Uggg. I hate dreams.

Scott had clinic today and all went well. His anc was 5500 (steroids!) and all other bloodwork was good, apart from baso (I think) which was elevated and could indicate an allergy. The nurse was a little unsure but said not to panic. So I won't. LOL. Whilst I was there I was introduced to a new cancer Mum from Liverpool, her 16 year old son had recently been diagnosed with Hodgkins Lymphoma. What a nice kid he is and has this great Liverpudlian/American accent, you got to hear it to believe it!! Nice Mum too.

So, Scott had his methotrexate and then off we went to his next appointment with the optician. David also had an appointment and both of them got new prescriptions and new specs ordered. As I type this they are both bedridden (and softly whining) with headaches and sore eyes from the drops.

As for Kev ... well he is a bit of a medical mystery but is doing a little better. He has had the doctors all confused but has been moved to the stroke ward and so I guess that is where they are currently leaning. Thankfully he has bouts of consciousness and has squeezed Mary's hand, a big move in the right direction. Mary said the stroke ward is full of dottery old people with the exception of Kevins bed which is usually surrounded by young folks blasting Hannah Montana CD's in the hope Kevin will 'snap out of it', jump out of bed and leg it! Kevin means a great deal to me, as a teenager he lived with me for a couple of years, he was a pain in the neck but so incredibly cute and loveable too. Hopefully he will make huge leaps and be back to his normal, annoying self very soon.

Thanks for checking in. Over and out.

There is surprisingly little to be found on the internet about t-cell ALL. I guess considering only 400 or so children (and even fewer adults) a year in the US are effected then I guess it is understandable to a point. Reliable statistics and information is hard to come by.

We were ofcourse warned at the beginning, not to do our own research, and for good reason, most information is either out of date or inaccurate. Did we listen? Certainly not. I remember the first document I read after being released from hospital (following diagnosis) quoted a 40% survival rate for t-cell. Then, and to much relief, I noticed the date it had been written!

Before Scott's confirmation of ALL sub type it was presumed he would be pre-b, a survival rate in the high 80 percentage range was given. A few days into treatment t-cell was confirmed and and 5 year event-free survival (event being induction death/relapse etc) dropped to between 70 and 75 percent.

I have since questioned our doctors about this figure as it would seem that survival for t-cell is very much on the increase. One of the doctors has agreed and said latest evidence is showing t-cell survival to be getting close to pre-b. This is all down to the disease being recently (within the last 10 years or so) recognised as a much more aggressive subtype and therefore requiring heavier drugs, a shorter break between cycles and radiation. It is also of interest that a specific gene has now been identified which may play a part in future treatment and an even better success rate.

Having said all this, I am still very skeptical at the validity of statistics and the results of trials. I have heard too many whispers as to the ethics involved, the 'spin' and recruitment of patients.

It is a cruel disease, physically and mentally draining, year after year. Some children have been in treatment for a great many years and too many dont make it. At the end of the day the odds mean nothing. Survival is either 100% or 0%. Every child is a statistic one one.

Study results of incorporating high dose methotrexate, with leucovorin rescue, into the protocol. Obviously this increased survival and the phase III study is now the common treatment for t-cell....


Improved Event-Free Survival (EFS) with High Dose Methotrexate (HDM) in T-Cell Lymphoblastic Leukemia (T-ALL) and Advanced Lymphoblastic Lymphoma (T-NHL): a Pediatric Oncology Group (POG) Study.
Sub-category:
Pediatric Lymphoma/Leukemia
Category:
Pediatric Oncology
Meeting:
2001 ASCO Annual Meeting
Abstract No:
1464
Citation:
Proc Am Soc Clin Oncol 20: 2001 (abstr 1464)
Author(s):
Barbara Asselin, Jon Shuster, Michael Amylon, Edward Halperin, Robert Hutchison, Steven Lipshultz, Bruce Camitta, Univ of Rochester Medical Center, Rochester, NY; Univ of Florida, Gainsville, FL; Stanford Univ, Palo Alto, CA; Duke Univ, Durham, NC; SUNY Syracuse, Syracuse, NY; Midwest Children's Cancer Center, Milwaukee, WI.
Abstract:
Although lymphoid malignancies with T-cell immunophenotype are associated with distinctive clinical and biologic features, true lineage specific treatment has not been identified. The Dana-Farber Leukemia Consortium (DFCI) series of regimens, in use since 1981, showed excellent outcomes for patients with advanced T-cell malignancies. The results of a recent trial of the Berlin-Frankfurt-Muenster Group suggested that HDM was beneficial in treatment of T-ALL. The currently ongoing Phase III trial, POG 9404, was designed to determine the effectiveness of 4 doses of HDM when added to a multi-agent chemotherapy backbone modified from the DFCI protocol. T-ALL and T-NHL patients were randomized at the time of diagnosis to the standard arm with or without HDM (5 Gm/m2) and leucovorin at weeks 4, 7, 10, and 13 of therapy. A second randomization assigned patients to treatment with or without dexrazoxane, but these results remain blinded. Between 6/96 and 9/00, 221 and 220 eligible patients were randomized to No HDM and HDM therapy, respectively. The observed (obs) and expected (exp) number of treatment failures are shown below. The logrank Z statistic at the interim analysis of 9/00 was 3.12, which exceeded the O'Brien-Fleming bound of 2.89, based on 74 of 123 planned failures [p value = 0.0018 (two-sided)]. Three-year EFS (SE) are 72.2% (6.7%) vs. 86.0% (5.6%) for the No HDM and HDM groups respectively. We conclude that addition of HDM to this chemotherapy regimen, results in improved EFS for these patients due to decrease in occurrence of induction failure and CNS relapse.





Group Obs Exp* Relapses BM/CNS/BM+CNS Induction Failures
No HDM 49 35.5 29 (8/13/4) 16
HDM 25 38.5 15 (8/5/0) 8
*Adjusted for dexrazoxane randomization





An article on Notch1 which I am going to have to ask Dr Tebbi about...



http://bloodjournal.hematologylibrary.org/cgi/content/full/108/4/1151

I think that the time has come for our little family to tattoo hexes onto our foreheads.

I received the dreadful news this morning that the boys Uncle Kevin has been admitted to Aberdeen Royal Infirmary and is currently in a coma. He is only 31 and tests are being run to find the source of his trauma. It was fortunate that he was found by concerned friends but he has been this way for at least 3 days now.

Ironic that 14 years ago Derry had just been born at the same hospital. Granny was there then and again finds herself at the ARI, this time under terrible circumstances.

Our thoughts are with him.


















Update: I have spoken with his nurse at ARI and there would seem to be something suspicious on his brain scans, although still inconclusive. Kevin is also diabetic and his blood was very screwy on arrival, probably due to being unconscious for many hours prior to being found. Nothing more is being done today to find the source of his problems. It is at times like this I am grateful for the US healthcare system.

It’s Derry’s birthday!!
(well in the US still an hour to go, but it's the 9th in Scotland so on a technicality we should be lighting the candles and letting the merriment begin)
His birth was fairly uninteresting I suppose but for me, the best day of my life, and for him, fairly important too! He started life as he meant to continue … late. I was about 2 and a half weeks overdue but had been having contractions for days. I had showed up at Torphins Maternity Hospital (not much of a hospital it only had 2 maternity beds) at 3am several nights in a row trying to convince them I was about to have my baby.
“Nope, you are not in labor.”
“Yes I bloody am.”
“Go home Mrs. Paterson, you are not in labor and I am a busy woman.”
“Oh yeah? Busy? Doing a little broomstick repair? Stewing up a little eye of newt?”
Finally, after a few days, I got the call to come in; the baby had to be born one way or another. They gave me an injection and still nothing. Later that night the midwives gave up and sent me off to Aberdeen in an ambulance with Callum chasing behind in an illegal car and a suspended driving license. Yeah baby, we were badasses!
In Aberdeen they pulled out the big guns (and the big stick) and broke my waters. 6 hours later after nothing very impressive pain-wise they told me to push. Well I didn’t get that ‘push thing’ and even after they showed me what forceps looked like I still didn’t get it. In minutes the room was full of doctors, midwives, a teeny tiny Asian lady brandishing the aforementioned instruments of torture, and some mystery onlookers.
A few minutes later Derry was extracted. I asked if it was a boy or girl. “Oh most definitely a boy, take a look at THIS”! I should never have told Derry the doctor’s first observations of him. It seems to have gone to his head.
He was beautiful, bruised from the forceps and very yellow. I had him for only a minute before he was whisked away and thrown under a sunlamp to treat the jaundice.
Poor Callum was a wreck; he disappeared for a smoke and a bit of a sly big-girls-blouse cry. I was left with a mammoth plate of toast, a nice cup of tea and a telephone. It was about 3am and I remember calling Mum to let her know she was a nana.
“It’s a boy Mum!!”
“Oh dear, I am so sorry”
Yes that is really what she said. LOL.
“Do you have a name yet?”
“Yup, his name is Derry.”
“His name is WHAT?????”
I still think it is a great name. It is Gaelic and means red warrior. There are many places in Scotland and Ireland named Derry although it has proved to be a pain in the arse in the USA. The accent means it is pronounced ‘dairy’ over here. GRRR. His middle name is Mclaren which is his clan name, his roots, and of which he rightfully has much pride.

Happy 14th sweetiepie and lang may yer lum reek!!
Isnt he a cutie! ...

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.

Camp Sunshine pic's

Well we survived the wilds of Maine and it was stunning! When we arrived on Saturday afternoon at Portland we stepped outside to a lovely cool and drizzly afternoon, to a glorious place where you didn’t sweat constantly or crave a set of gills to survive. The weather was most definitely Scottish and so was the countryside. I loved it.

After a bit of a kerfuffle with transport we finally made it to Camp Sunshine. The site is on the shores of Lake Sebago, at eleven and a half miles long it is the second largest lake in the state. It is an incredible part of the world to be sure. There are no palm trees, no lizards, no alligators, no big huge Wal-Mart’s on every street, no 8 lane highways, just old world charm, lots of fir trees and clean fresh air. I loved the architecture of the houses and buildings; I loved the twisty roads, the lack of billboards, the small, family run businesses and seeing hills again felt like coming home. Maine rocks!

Anyhow, back to camp…although I’m not sure where to start!
The camp itself is impressive and well thought out. Accommodations were basic and had me worried but we made it though 5 days without a second bathroom or vacuum cleaner. Obviously though Camp Sunshine was built not as a spa resort but with communication and interactivity in mind, and for those of us who are not people friendly, well, there are kayaks and a wide open lake!!

The main building housed the dining hall and theatre, games rooms, a computer area, arts and crafts, the ‘tot lot’, a pool and various meeting rooms. Outside there is mini-golf, archery, a rope course, climbing wall, lots of game areas and THE MARINA. The whole site was very tastefully done and well maintained.

There were about 40 families at camp, and helping out the full time staff were 75 volunteers. The volunteers were mostly college kids, many of whom had survived pediatric cancer. There were also others, of all ages, who just simply wanted to be there and give their time and love to a valuable and worthy cause. I met a wonderful lady who was there with her large family; they had given up a week to volunteer wherever they could be of assistance. One of her children is a step-child whose mother had died a few years ago from cancer. That is only one example of the great people we were lucky enough to meet. It was also good to see a few familiar faces. Two other families from this area flew up to Portland with us and on arrival we bumped into a great family we met at Camp Boggy Creek in the spring. Their son is the same age as Scott and had just finished treatment for bone cancer. They also have a stunning daughter the same age as Derry!!!

I will write more of camp over the weekend as I can’t concentrate anymore due to the noise outside. It is the 4th of July and for those reading this outside of North America, think Battle of the Somme! Not only is there millions of dollars worth of explosives being detonated outside my door, we also are in the midst of a thunder storm.

I'll leave you with Scott in drag ...

Quick reminder

Just a reminder that Scott did not have clinic today. We're currently on the way back from Camp Sunshine and will post a bit later today.
--------------------------
Sent from my BlackBerry Wireless Device

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.

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.

Proterra

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.

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.

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.

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.

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 ...

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!

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.