Scott & Sunny

Scott & Sunny

Monday, March 31, 2008

Scott has been feeling great these last few days, it is simply wonderful. I even remarked to David earlier “he’s starting to look like a normal kid again”. No longer do people look at him ‘funny’ or with curiosity or pity. He still has his round face but is getting a little colour in his cheeks and it’s even getting to the stage where he needs a hair cut!! My friend Paolo at Toni & Guy promised him a makeover whenever he wanted but so far Scott is refusing and vowing never again to cut his hair.

He has been working hard with the Florida Virtual School and recently started a new course studying World Cultures. Today he sat for three hours totally engrossed in an interactive exercise, building a ziggurat. He loves to learn about the ancients and if my brainwashing goes according to plan in ten years he’ll be off to the Great Rift Valley, a trowel in one hand and a toothbrush in the other.

David is starting to feel better and is now on some pretty heavy duty antibiotics which have given him a bit of a ‘Chernobyl’ look but did thankfully, stop the pain and fever.

Well that’s it for now, we have a busy week ahead and all being well lots of good stuff to look forward to. I’ll leave you with a beautiful song by Oasis. Scott loves Oasis. Scott has great taste!

Saturday, March 29, 2008

Possum update: we have four babies, not three as previously thought. The 'nest' is right outside Scotts bedroom window and as night fell and the parents returned (after going AWOL this afternoon) we have discovered what noisy little furrballs they can be!
Scott is feeling much better than a few days ago thankfully. The pains have gone and the emotional turmoil and moodiness from the steroids have subsided. Hopefully we shall now have a couple of weeks of Scott feeling somewhat 'normal'. The next big chemo (a week on Thursday) will also involve ara 'c' and methotrexate being injected into his spine. This is something he hates, it leaves him with backache for a few days but the most traumatic part is Scott's reaction to anaesthesia.

David is still running a fever and is in a lot of pain. He did see the doctor yesterday and it seems he has a very nasty sinus infection. The antibiotics havent kicked in yet and he is having trouble with headaches and his vision. Hopefully in a day or so he'll be on the mend.

Derry is doing fine, still struggling with school but happy all the same. He is off out at hockey practice right now and I have to say a huge thank you to my friend Stephanie for making sure he got there today and keeping an eye on him. She has been an angel for us throughout all this and we are very grateful. Stephanie also homeschools her three boys and mentioned to me today about some outings for homeschooled kids on the horizon. I would definately like to be part of this and get Scott out and about a bit more often and meeting new children.

Speaking of Scotty, here he is with Jingle...

It also seems we have acquired some furry little squatters. Derry was cutting the grass earlier and came upon a big momma possum ....

He shrieked like a little girl, apparently it 'growled' at him, and ran inside. So I went out with an apple and guess what we found....

They look bigger in these pictures than they actually are. They are tiny, maybe three or four weeks old. I believe Dad is around somewhere too as a couple of nights ago I saw the cats all lined up staring at something in the garden. Turns out they were watching Momma Possum and big Daddy Possum getting all romantic right in the middle of our garden!!!

I hate to end this post on a sad note but I recieved a call this morning from a very dear friend of mine. Her child has relapsed. I will write more in the coming days and ask that you all do whatever you can to give this family your moral support. This family have been so kind to us and Scott is very fond of their precious little girl, Sierra. For everyone with a child who has leukemia relapse is the thing we dread more than anything else. Relapse indicates that the leukemia is stronger and more resistant than the therapy previously tried. Therefore the doctors must treat the relapse much more aggressively. Sierra had a relapse confirmed 2 days after her protocol ended, a time of great excitement yet a dangerous time, a window of opportunity for any remaining cells. I dont want to say too much about this child, sometimes writing here of other children makes me feel like a little old lady passing on the latest gossip. I just hope that you all know that this is not my intent. I write of these children only because I care and because of the great bonds forged during our crossed paths on this terrible journey.

Thursday, March 27, 2008

Clinic went well this morning and Scott had an anc of almost 5000 (due to the steroids) which is great but will obviously drop considerably in the coming days. I talked for a while with the doctor as it is becoming apparent that with each new round of vincristine the pain gets worse and lasts for longer. She said that they do see this with some of the children, whilst in others the pain lessens each time. She has recommended Glutamic acid which has recently been trialed by the Children's Oncology Group and has been shown to ease vincristine pain. Also recommended and prescibed was Paxil!! Scott definately needs something to ease his depression and anxiety and I was very keen to give it a go unti I read up about it. I'm already a basket case, and whilst Im sure this drug is a blessing to many, many people, I dont think I am comfortable giving him something which says in big bold letters, 'children who take this medicine may be at an increased risk of having suicidal thoughts or actions'.

On to David. He woke with a temperature of 100.4 but said he was well enough to drop us at clinic and go to work for a while. He seemed okay this afternoon, not his usual chirpy self by any means but certainly not in the zombie state he was in last night. He yelled at the TV a bit , ate pizza, played his favourite playstation game a while and all seemed hunky dory. Then about an hour ago he started shaking and shivering and saying he hurts all over. He's now in bed covered in a hundred blankets making a strange sort of wheezing sound. His temperature is 99.4 but he's definately coming down with a cold or flu or something. Grandmomma, Papa and Carolyn ... I promise you I am taking good care of him. Were he to get up and walk right now he would sound like a box of tic tacs on legs with a mild case of vitamin C poisoning.

Thanks for checking in us. Goodnight.

Wednesday, March 26, 2008


Poor David is in bed with a fever of 100.9 and feels like death warmed up. He says his whole body hurts and thought he was having a heart attack earlier at work. I felt like that last night but thought maybe I just needed to burp real bad. I still feel like I'm being squeezed but think its just stress - for me at least.
Needless to say we have gone into overdrive with the hand sanitizer and clorox. Scott's body will hit nadir in a day or two and his immune system will be screwed.
I gave David some Emergen-C and then went to make him my super-duper elixir - mango juice, soy protein, organic yoghurt, blackberries, blueberries and some green 'stuff'. I think he must have heard the blender because when I went back he was pretending to be asleep. :(
David tries to carry the world on his shoulders, sooner or later, it just gets too heavy. He needs a rest that's for sure.

Tuesday, March 25, 2008

A Punching Bag

The title of this post has dual meaning. It is both what I probably need and what we feel like right now. Two of the latest blows make it so. Be forewarned, this is a rant just like Stephanie's earlier post today.

First blow - our Government.

While filing out the old taxes this past weekend (online, it's easy and my bank makes it cheap), a window pops up and says "About that tax rebate: You will not qualify because you used an invalid SSN for Stephanie". Keep in mind Stephanie and the boys use "ITIN's" from the IRS. The ONLY use an ITIN serves is for TAX purposes. However, in Washington's brilliance, the "tax refund" bill (passed just in early February) is written in a way that say folks using ITIN's are NOT allowed the rebate. Even if filing jointly with a natural-born citizen. It isn't that we just don't receive the rebate which would be calculated including them, the rebate for a single US citizen (me) is ineligible for me to receive.

All because they use numbers only given out by the IRS only. Which are used only for tax purposes. Not to mention, the boys can't procure SSN's until they are working age (Immigration Law). We are going to spend a morning at the local SSN office to file for a number for Stephanie (which will change nothing as 1. she will no be working while Scott is in treatment and 2. it will only be used to put on a tax filing for the benefit of getting said rebate and 3. because due to her being a LEGAL immigrant, she can't receive any public assistance for 10 years). Will see how that goes.

Second blow - Insurance plan.

We've had a great insurance plan from work. So good in this type situation, I've been a huge proponent of encouraging people to do the math and switch if it makes sense. The plan had a sizable deductible ($4,000), but after that was met with hospital, doctor and pharmacy bills, everything was covered 100%. The maximum we'd spend any plan year was the 4k. Pretty clear cut and easy to plan for.

So I receive today our Open Enrollment letter. Same provider. Same plans options. Just one wee little addition this year - "We will be introducing prescriptions co-payments AFTER the deductible is met on the high deductible plan". Great. This makes me see red. The one thing I could count on as not being a worry through the nightmare of having a child with cancer was our insurance, as I knew exactly what we would spend, planned for it, and forgot about it.

Now, with this in place, there is no absolute out of pocket maximum. We have no idea what drugs Scott will need (we know the ones in the protocol). What if we had to pay for all those nasty Luvenox shots last September? So there is no way to plan and forget what expenses will be faced, as there is no maximum. This additional cost could easily be as much as the deductible again. We're always at the pharmacy for something or another.

So we all feel like we want to beat the hell out of a wall or something.

At the same time, we all feel like we've had the hell beat out of us.

In no way will we let Scott go without anything he needs in this fight, that is not the issue. It is just a frustration very similar to what Stephanie wrote about earlier - this mess is ugly regardless of what facet you view. It just doesn't get the coverage or interest that Lance Armstrong on a bike of Susan G. Komen's pink ribbons do. It doesn't because millions of women face breasts cancer. Millions of men face prostate and other cancers. But only a few in a million are kids that are diagnosed with cancer.

And most of the cries to help the few go unheard.

In summary, Dubya (the rebate was his idea, and he hates all immigrants it seems, and especially makes the LEGAL ones suffer while doing nothing to stop the illegals), Congress (for writing such drivel and not funding ped onc research) and UnitedHealthcare (for killing the spirit of high deductible plans - one of the best ideas in healthcare in decades) can just all go straight to bloody hell.

Have a nice day.

Paging Bob Geldof

As time goes by it seems the angrier I become. I do not believe David and I were chosen to parent a child with cancer because “we are strong enough to deal with it”, nor do I believe that the children who die from cancer are any more special than any other child on Earth or that they have been called home to god. I am sick of reading these hogwash supposedly comforting words. I am also fed up with the truth of this horrific disease not being exposed. Whilst the image of the happy bald child playing in the sun may be more pleasing to the eye than a child throwing up so aggressively that he or she shit themselves, the nasty and cruel reality should be out there. I would love to run a PETA style advertising campaign, in your face, this is what cancer does, and it is NOT about cute bald kids and their bravery. Bravery does not beat cancer neither do smiles. Neither does prayer. They may help the individual I am sure but at the end of the day have no bearing on the end result. The only chance at a better cure rate is more money. And to be perfectly honest were I to see a cute and fluffy seal cub being clubbed to death or a happy bald kid, guess where my money would go? I know that prior to Scott’s diagnosis I had absolutely no idea what childhood cancer entailed or to the extent of those diagnosed. I am sure that I must have seen campaigns for pediatric cancer to raise awareness but cannot recall a single image or slogan yet certain images, such as Romanian orphanages, fluffy dead seal cubs or AIDS victims, will stay with me for life. Pediatric cancer is very, very ugly and can take many years to overcome or to die from. I would love to take your hand and show you around our oncology unit, and whilst there may be hope and smiles there is also an untold story of pain, worry and immense suffering.

Monday, March 24, 2008

Driving for Donors

Please view the video above about Pat Padraja and his Driving For Donors program. Pat and his parents have asked us to help with this year's drive, so please help us help them! I know most of the folks that come here regularly will help in any way possible, but we need to spread the word as far and as wide as possible. So if you have an email list, please contact your friends and family and give them this link:

Any help in any way will be greatly appreciated by Pat and everyone at Driving for Donors. But even more importantly, each person that finds a marrow match from the people signed up by Pat's effort will have another chance at living.

And I can guarantee you they will be even more appreciative.

Pat's mom sums up their need by in the message she sent us:

Can you help us with this year’s drive? We are having a hard time fundraising this year and I am beginning to panic a bit. We need to raise $35,000 more for the US portion of the drive that the RV will leave for in early May, not to mention another $100,000 for the international portion of the drive to the countries that are desperate for Pat’s help!

So please, spread the word far and wide. Thanks!

Sunday, March 23, 2008

Saturday, March 22, 2008

Joanne Lee

A friend, fellow cancer mum from St Joes and a heck of a brave lady. Look what she did today to raise money and awareness for St. Baldricks and pediatric cancer......

before ...

and after...

Doesnt she look beautiful!!
For more photos and updates on her little girl, Samantha, please visit her caringbridge page...

Maybe its not just leukemia that's in the blood

Hey, now boys there’s something not right
Did anyone see Willie at the dance last night
Let’s pick up Boa without a fuss
Chuck him in with caimans at the back of the bus
‘Cause we’re running late, it’s way past ten
We’re driving through the straths and glens
Come on, Johnny Bulla, make it fast
For the 12 noon throw-up
And the clash of the ash

Well we’d better make change now it seems
Geek to the centre, Weed to the wing
The Rocket’s old and slow and due to retire
Stick him right on the sawdust ready to fire
But if we do all that and there’s no-one spare
Tell me who’s gonna mark the Kinlochsheil Bear
He’s hard as nails, quick as a flash
He comes down from the caves
For the clash of the ash

This story started long ago
With heroes forged and legends told
And for every fighting highland man
Stand by your brother, die for the clan
But when the whistle blows and the battle’s done
These shinty boys shine like the sun
We don’t play for fame, we don’t play for cash
We just play for the glory
And the clash of the ash

Derry is playing (and Annie watching) soon. Scott feels like he's been dragged through a hedge backwards so it doesnt look like we'll be there to cheer him on. Good Luck Dezzy!!

Friday, March 21, 2008

Numb and wide awake

Another one of those nights tonight. One where I'm tired (we're always tired it seems) but can't become "sleepy". Nerves do that to you. Worry does it. Uncertainty does it. Scott is in full red face mode now. Full of joint pain, moody and swelling up. This cycle gets old when it rolls around every 3 weeks. Hopefully he'll get through the worst of it before next Friday so he can do his Relay for Life talk.

Tonight came news we didn't want to hear. Little Matthew Gliddon is being taken home by his parents early next week. They put a message up on his site tonight saying that was the case. His parents have had the conversation none of us cancer parents want to ever have - the conversation with folks that deal in Hospice care.

We ache inside for his parents, and especially for Matthew. He's just an innocent kid. His mom made a post that for the last 3 Christmas mornings, he had been in the hospital. The last time he wasn't, he was 2. The little guy hasn't ever known what it's like to wake up at home on Christmas. So many things he's not known or seen. And far too much trauma, pain and sadness.

Matthew was one of the first kids we met when Scott was diagnosed. If some miracle doesn't come to Matthew, I fear how it will affect Scott. Scott is a very emotional caring person. While he's been around many kids, he's not yet had one he knows face to face lose this battle.

I fear his reaction. But I also fear not knowing how to answer what questions may come. I hate having questions asked I can't give solid answers for. We're supposed to be able to answer anything for kids.

Please keep Matt in your thoughts. He's just a little kid, and this ugly beast is getting the best of him.

I hate this beast. I hate the drugs that have to be used to fight it. I hate seeing what it does to Scott, and all of these kids. It's painful and numbing all at the same time. No kid should face this.

Thursday, March 20, 2008

Well, the pain has already started. Scott is so distraught, I know part of it is exhaustion, yet he is so wound up he cannot rest. I tried every trick in the book to make him smile, my Dayffd Thomas ("I am the only gay in the village), my Rick Mayall, ("Once upon a time in a wood, there lived a pair of trousers ...") and my real artificial squirty cheese rendition, but nothing seemed to work.

Its going to be a long night. :(
Clinic went fine this morning thankfully. Scott had an anc of around 2000 and fortunately his platelets were back up to 253. Biliruben was 1.2, top of the normal range but under the magic 2.0. His protocol dictates that anything above that number means half the recommended dose of vincristine. Due to his counts holding steady the last 3 cycles he had his 6mp and methotrexate upped to 90%, hopefully he will tolerate this without a crash in counts. His steroids were also increased - grrr - due to slight weight gain over the last few months.

Hopefully all these increases will not make for even worse pains and side effects over the coming week. I hate vincistine day and the start of steroids but know I would be a basket case if he wasnt getting his medication.

He has just taken his first dose of steroids and is already harassing me to call Pizza Hut. There is no way they have 'kicked in' yet, I understand the cravings oh too well but I think there is also a very obvious psychological element too. Now and then people ask me 'what can I do for Scott', well a Pizza Hut gift card would be very welcome as this whole cancer thing is proving to be a 'rather extravagant' experience!!

Well that is is for now, please think of David and I (LOL) as we deal with our steroid monster over the coming week. I think after caring for a child taking 165mg of prednisone a day, the teenage years will be a walk in a beautiful, flowery park.

Also please keep little Mathew in your thoughts. A lot of hearts are breaking at what this sweet child and his family are going through. Our friend Pat Pedraja is dedicating next years 'Driving for Donors' in Mathew's honor. Im so proud of Pat for his hard work and compassion and whilst I am horrified at what Mathew has had to endure I am also in awe of him for being so very brave. I'm just believing and clinging to the hope that Mathew will somehow and someway beat this crap.

Thank you for checking on Scott and Happy Easter!

Wednesday, March 19, 2008

Kyle is a young man in New Zealand with t-cell who has been fighting this with very little support from his family. I know he follows Scott's journey and we also watch over him. He is having so many health problems and is in intensive care. He was diagnosed 6 months after Scott and is still not in remission.
Please visit his webpage and leave him a message of support. The internet and his friends around the world are pretty much all he has and he values knowing that there are good people out there who DO CARE!
According to recent research (Prof. Adnan Qureshi, University of Minnesota) owning a cat can reduce the risk of heart attacks and strokes by more than a third. Prof. Qureshi said he was "surprised by the strength of the effect that owning a cat appeared to have".

Neat! The perfect validation to get another kitty.

Snipped from CNN ..

Even in death Arthur C. Clarke would not compromise his vision.
The famed science fiction writer, who once denigrated religion as "a necessary evil in the childhood of our particular species," left written instructions that his funeral be completely secular, according to his aides.
"Absolutely no religious rites of any kind, relating to any religious faith, should be associated with my funeral," he wrote.

Just for the record, should I drop down dead tomorrow, please do the same for me. And if someone could scatter me atop Craigendarroch that would do nicely.

Also from CNN

BISMARCK, North Dakota (AP) -- Using tiny brushes and chisels, workers picking at a big greenish-black rock in the basement of North Dakota's state museum are meticulously uncovering something amazing: a nearly complete dinosaur, skin and all.

Unlike almost every other dinosaur fossil ever found, the Edmontosaurus named Dakota, a duckbilled dinosaur unearthed in southwestern North Dakota in 2004, is covered by fossilized skin that is hard as iron. It's among just a few mummified dinosaurs in the world, say the researchers who are slowly freeing it from a 65-million-year-old rock tomb.

This is the dream of paleoanthropologists. Can you imagine seeing not just the fossilized bones of our ancestors but the skin and even facial features too? It takes extraordinary conditions but it can happen!

Tuesday, March 18, 2008

Its late, the boys are asleep, and as is becoming normal for me, I am sitting here feeling wide awake, yet tired and very, very anxious.

There is a documentary out there, I think its called ‘A Lion in the House’, it is about children and their long fight against cancer. I haven’t watched it and I never will, but the title just sums up how this all feels. I don’t know about other parents going through the same thing so I really wouldn’t like to speak for them, but for me, it’s like a constant dread, something so bad it can’t even be put into words. There are times in the day when I am fine and life feels somewhat okay, not perfect by any stretch of the imagination, but bearable. Then suddenly my heart starts beating so fast that I cant even catch my breath, it comes from nowhere, it just happens. A hundred thoughts and visions appear, all the possibilities, all the things I have seen and read of what could be lurking around the corner. The lion, just out of view for the time being, but for how long?

I know that there are some of you reading this thinking to yourself, “get a grip Stephanie, and stop being such a doom monger – think positive!” Well when you’ve been struck with something like t-cell that only affects about 1 in a million you no longer have the ‘it wont happen to me or my child mentality’, all bets are suddenly off.

Time in treatment and current state of health are also of little comfort. The children we know with leukemia that are currently fighting for their lives have all been in treatment for longer than Scott. Like I said once before, it is 10 long years before the word ‘cured’ is used.

Relapse is the obvious concern, something far worse than the original diagnosis. Should Scott relapse in the next few years a bone marrow transplant would be the treatment plan. This is a procedure fraught with danger and failure. If he were to relapse say 5 or 6 years from now chemo and radiation may be tried again. Scott’s current protocol (POG 9404) in trials showed a relapse rate of 11%, half of those occurring in the central nervous system. Due to t-cell being a more aggressive leukemia relapse usually happens earlier than b or pre-b cell. The median time for relapse in t-cell is 1.2 years, compared with 2.5 years in b and pre-b. But the relapses after 1.2 years could occur years later.

There are also many other concerns, primarily secondary cancers.

On to other things …

I received a call yesterday from the American Cancer Society inviting Scott to attend the Relay for Life next week in Tampa. The gentleman also asked if Scott would be willing to say a few words on his thoughts of Rock Camp. I told him that Scott missed out on Rock Camp last year as he had had a stroke. I think that made Scott an even more sought after speaker!! So we’ll see. Scott is considering it but gets the heebie jeebies at the mere thought of having to speak in public. Whether he speaks or not we will probably attend if he is feeling okay and he can join the other ‘survivors’ in a lap of honour around the track and enjoy the evening of festivities.

Well you’ll be pleased to know I have finished whining, for today at least.

Thanks for checking in. G’night.
In case you ever wondered what the enemy looks like, here she is in all her fat and ugly glory ...

Monday, March 17, 2008

Camp Boggy Creek Deux

Yes, Friday found us off to Camp Boggy Creek. The camp is a couple hours away from us in the thriving metropolis known as Eustis, FL......or Cassia, FL. Depends on which side of a pasture your on I believe. Being as a LOT of Florida is literally "boggy", I was wondering if we were off to a few cabins in the middle of a swamp.

Not even close.

Boggy Creek was an amazing surprise. Calling the place a "camp" doesn't truly describe what it has to offer. Yes the activities are very similar to those of attended by countless kids during "summer camps", that is - kids without such diseases. Boggy Creek is tailor-made for kids that are battling a long list of nasty, life-threatening diseases. We "camped" in a quite comfy bunkhouse for 8, which is air-conditioned and heated. Plenty of room and footlockers at each bed! This made me briefly remind Derry of a scene or two from "Full Metal Jacket"......but I digress.

This weekend was one of the Camp's "Spring Family Weekends". Basically seems to be a primer for families to get to know the place, or comeback for a return visit (we decided to try it out, as we're considering sending Scott for the week-long session this summer - all alone). We were all a bit shocked at the beginning, but that wore off rather quickly. We were greeted by Nick, our 'Camp Pal' for the weekend as soon as we drove up to our cabin. Nick is a student at FSU and a volunteer for the weekend. He was wonderful with all of us, and especially the boys. We thought Scott may wear him down on Saturday, as he was dragging him from activity to activity non-stop. Nick would simply ask "what do you want to do now?", Scott would answer, and they were on their way. Stephanie and I were apprehensive about arriving and letting Scott loose with someone we had never met, especially considering he hasn't really been out of our sight since diagnosis. Nick made quick work of making us comfortable in that regard.

It also was about Derry as well. Derry being 13 and far too cool to hardly even talk to us, much less strangers, had us worried. But it didnt' take long to figure out Nick also plays World of Warcraft and "has several Level 70's", which instantly made him someone to worship in Derry's eyes. Derry longs for a "Level 70", but has only made it to Level 30. LOL.

Scott got to shoot archery, mini-golf, boat, swim, sing, dance, play in the arcade and woodwork. We sat around Saturday wondering where in the world all his energy was coming from. He hasn't been that happy and active since he was diagnosed. He was on the go Saturday from 7 a.m. until 11 p.m., with a brief break in the afternoon for about 90 minutes. I was sure this would result in him sleeping until noon Sunday, but I tapped him on the shoulder at 7:10 Sunday to ask if he wanted to lie in or go with Nick at 7:30. He just said "I'm gonna go with Nick", hopped up and got ready and was waiting on our porch when Nick came walking down the road.

It was all very nice to see and experience. The camp "pals" the place recruited were wonderful. Our endless thanks go to Nick, whom was a gem. There were also Norah (from a university in Toronto - which the name fails me) and Cari (from Yale) that spent time and interacted with the boys anytime they saw them. How they instantly remembered and accepted so many struggling kids with such trials is beyond me. I think most have a knack to be very special folks in life. More so than they are now.

But the hub of the wheel is a woman whom we still only know as "Kimmy". She never gave anyone her "title" or what her position was at camp. She obviously is the camp director or whatever one may be at such a place, but she only introduced herself as "Kimmy". She is an amazing person that seems to have endless energy for these kids. She even thought Stephanie's explanation of why we came was worthy of a "TV" (a wood one that hangs around the neck). The TV's traveled around to different folks over the weekend, as the original folks that got them were to give them to the next person they saw do something special. A little girl in the opposite side of our bunkhouse continually was opening the door for us each time we came up, I think in the hopes that Stephanie still had her TV - alas she had already given it up to another kid. I was pleased when the little girl showed up in the dining hall late Saturday with her own TV around her neck.

I know I'm rambling, but it was a very nice weekend. I think back and realize now that Scott hadn't spent a single night away from his bed since diagnosis that wasn't in a hospital bed. Camp Boggy Creek gave him a bed that was neither home, nor the hospital. And that is something which to him is priceless and long overdue.

Now if we can figure out the food hurdle with Scott (very picky eater, and may starve if there for a week) we can let him have a whole week that is "his", and only his.

Here's the the Boggy Creek Gang. Please go and check out their website. Founded by Paul Newman and Stormin' Normin', it is a great place. Probably best summed up by a quote from Paul Newman himself on the website:

"A place where kids can go, have fun and raise a little hell".

Sunday, March 16, 2008

Boggy Creek

On Friday afternoon we headed off to Camp Boggy Creek. We knew Scott may struggle with the food at camp so we made a quick pit-stop at our favourite Irish chipper/pub, ‘Raglan Road’ at Downtown Disney to bulk him up a bit first. Not for our benefit of course, we don’t like chipper chips. LOL!

So after a bit of a drive through the boonies we get there and check in and are met by our helper/babysitter/playmate for the weekend. Nick is a medical student and a camp volunteer and was wonderful. We all loved him but Scott especially, he followed Nick all weekend long and together they danced and sang their little hearts out. Derry really enjoyed Nicks company too but there was no way he was going to do any of that embarrassing “gay” stuff. No siree.

Each family were staying in a lodge that would accommodate 8 kids during the summer week long camp. It was basically a dormitory, very simple but very impressive too. Also, there was a handmade teddy bear and a crocheted blanket on the bed for each of the boys, a real nice touch! The standard of workmanship gone into building every part of Boggy Creek was incredible. Beautiful buildings and grounds, absolutely no expense spared. Boggy Creek was founded by Paul Newman and Gen. Norman Schwarzkopf about 10 years ago (I think) and they sure made a perfect job of it.

Friday evening was spent eating, singing and dancing and getting to know Nick. There were about 30 families staying for the weekend and every family had a helper. I wasn’t sure about the idea at first, I’m not one for having someone in my personal space but he just blended right in and I’m so grateful we had him around. He wasn’t intrusive at all and neither did I have any doubts about him spending time with the boys, I don’t know how he did it really; he naturally became part of “us” for the weekend.

Everyone was sent to bed about 10pm as Saturday was going to be busy, busy, and busy.
However we were awoken in the middle of the night (7.30am Sat.); Nick was at our door to pick up the boys to go canoeing!

As expected Saturday was busy and lots of fun. Derry and I went kayaking and he very nearly tipped us over into the pond. I had asked earlier about alligators, hoping to be told there were absolutely no gators at Boggy Creek. They said “they hadn’t spotted any RECENTLY”. Aaargh! Also last summer a black bear had been seen prowling around camp! Awesome!

Anyway it’s getting really late now and I want to go to bed so I’ll post this and some photos. (My pictures really dont do Camp Boggy Creek justice, for one thing my camera is rather 'dodgy' but also much of what the boys did they did just with Nick, either because we couldnt keep up with them or we were attending the adult 'stuff'). David can fill you in some more on the rest of our stay and on his thoughts of camp.

Boggy Creek is a wonderful place, the camp leaders were very professional and ‘kid-friendly’ and we really hope we can go back soon and maybe, oooh I hope so, catch a glimpse of a real life teddy bear!!

We also hope to see Nick again. It was sad to say goodbye.

Thursday, March 13, 2008

Today’s clinic visit went okay. His platelets took a bit of a dive from last week and his anc was good at almost 2000, a huge drop from last weeks 8000, however the nurse was happy with his results. Every week I have an expectation in mind with his counts and it seems I am always wrong, I thought we would see consistency in continuation but it doesn’t seem to be that way. They have said that if counts are okay next week they will increase chemo to 90%. It was reduced to 80% following the long period of worry and low counts over Christmas, but the doctors would now like to try him on a higher dose and see how he does.

We visited with Kaylie and her family and Scott gave her a beautiful princess bear he had made for her at Build a Bear on Tuesday. Hopefully when she is conscious and feeling better she will enjoy her ‘Princess Kaylie’. She has made a slight improvement on last week which is wonderful, her recovery is going to take quite some time but that’s okay. Thankfully Kaylie is making baby steps in the right direction.

We also met yet another kid recently diagnosed with t-cell. I must say it is very worrying how many children seem to have t-cell considering how unusual it is. The doctors have said that there is most certainly a cluster of it, but also that clusters are not necessarily anything to be concerned over. I do understand that but at the same time cant help but wonder that there is more to this than meets the eye.

Scott had an appointment with the dentist this afternoon. Chemo can cause havoc with the teeth so we aim for a cleaning and consultation about every 4 months. He had to be pre-medicated with a very large dose of antibiotics before his visit which he doesn’t like as it makes him feel yucky, and like many kids, he hates going to the dentist. So anyway, all went well, he had a wonderful hygienist who was so kind and understanding and cleaned up all the gunk he missed, then the dentist came for a look and we were thrilled when he said that Scott didn’t have any cavities or concerns. Then just as we were leaving, and quite unexpectedly, he gave us his hockey tickets for next week!! Good seats too. Silly old dentist, he made my eyes leak.

Well that’s it for now; the house looks like a bomb has gone off and its making me itch.

Thanks for checking in. Oh and a big thank you to our huge hearted Angel Laura. I loved the birthday present and yes I suppose I am a crazy old cat lady. Thank you very much.


I forgot to tell you about last night ... Scott managed to skate for a whole hour, he must have covered about 3 miles. That is without doubt the most he has been able to achieve since diagnosis!! And speaking of which, today marks 54 weeks of treatment, it has been 60 weeks since diagnosis but we missed a few weeks, these are added on at the end. Anyway, 54 weeks marks the half way point if all goes according to protocol, which hopefully it will. Whilst it is kind of depressing to think that after so long we are still only half way there, it is also kind of exciting too. Our glass of chemo is half empty.

Wednesday, March 12, 2008

Mathew is really struggling and since I last wrote of him he has endured so much, please keep the wee man, and his family, in your thoughts.

Kaylie is still in intensive care and we hope to visit with her tomorrow all being well. Our friend, Sierra, another little girl with leukemia is also in intensive care with pneumonia.

Thats not really much else to say really, I just feel sad. Leukemia is so cruel.


This night brings some heavy hearts to us. Nothing about this disease is easy. Absolutely nothing. But the situation right now just seems overbearing. The three kids Stephanie mentioned are all treated at St. Joe's along with Scott. I don't mean to put relevance meters on different kids just dependent upon where they happen to be treated, but all three are some of the first families we crossed paths with in this nightmare. And tonight, all 3 lie in intensive care at St. Joe's, and we're headed there for Scott's clinic visit tomorrow. All three have complications that seem far too much for wee little kids to have. It just isn't right. It makes us angry to a degree which words can't describe. The problem is, there isn't a "thing" to turn that anger towards. These three are hitting us really hard.

It is mind-numbing. The horrific part of this situation is all three of these kids about 2-4 months ago were basically "on schedule" or "on track" or whatever term we use to describe a situation that is basically "well, we don't have complications this week" - outside of being on a treatment protocol for some type of cancer. It's hard to take. I told Kaylie's mom and nana last week I remembered seeing them back around Christmas in the clinic, and had commented on how nice it was to see her well then, as we'd seen her during a massively long stay when Scott was diagnosed. I can't tell you how many laps we saw those women make around the floor with a wee tot just over 1 year old battling cancer. Then we saw her "well" and looking good. And then a "complication".

We all hate that word. We all hate the disease. And it does make us all angry. I wish there was a means to take it out on the disease itself. But it's an anger which there's no escape or retribution against.

I don't even know the point of my post here tonight. I just have to vent. I fuming mad and my heart aches for these innocent little kids and what they must endure. If cancer was a person standing out in the street, I'd be bashing the hell out of it with a baseball bat right now.

Sunday, March 9, 2008

Derry had his first game of the season today. Before the game even got under way we were expecting complete annihilation due to only having a team of 10. Five men short!!! This would mean each player working a longer shift and having shorter breaks. It wouldn’t have been such a catastrophe had the other team been in the same position however they had full strength. Not only that but the opposing team just looked bigger and meaner. It wasn’t going to be pretty!
It was a very fast and rough game, the kids from both teams skated like their lives depended on it. I was terrified that at any moment any one of them might drop down dead from exhaustion. Also kind of worried that Derry’s goalie might try shoving her stick through his spinal column at the first opportunity after they had a bit of a falling over together (so romantic) but it led to a goal against them, she wasn’t too thrilled and gave him a very impressive dirty look. She’s got balls that girl, I like her a lot.
Anyhow, Derry’s team WON! They beat the white team 7-5. I think players and supporters from both teams left the forum completely stunned.
When we got home we had big bowls of soup and fresh bread and talked about the game. Scott and I teased him rotten about his budding relationship with the scary goalie. Then he came out with this gem, “you know, I don’t believe in luck except on World of Warcraft, you know, when I bring out my invisible bunny you know?” UH????? No, we didn’t know.
Derry fell into bed about half an hour ago with aching legs but the biggest smile on his face I have seen in a very long time. By now he’s probably dreaming about witches, goblins, angry bunnies and invisible goalies. Awesome.

Derry (Paterson 44) racing to save his princess, I mean, goalie....

Either getting advice or being told off for sitting on goalie, not sure which ....

Friday, March 7, 2008

It’s late and I’m miserable as hell. I was reading earlier that scientists have discovered a ‘happy’ gene, very cool, however I don’t think mine is working. And not being happy makes me sad. How come so many cancer patients and parents seem so bloody happy all the time? I just don’t get it. Is it because they are on better drugs than me? Is it the “Jesus Beam”? (Only a few of you will understand that term, tis okay) Maybe it’s because I (and David) didn’t get zapped and we don’t have the hope and warm fuzziness of everlasting peace and life that comes with it.

I am so angry nowadays yet I have nothing or nobody to be angry at. Leukemia is as natural as any other ailment and as much as I am in awe at the evolution and survival of our species I absolutely hate being in a situation of having a child who is not among the ‘fittest’ and without medicine would stand no chance whatsoever at survival. What can I be angry at? A mutated gene?

Having a child with cancer is devastating. We have no idea what tomorrow will bring, or next week or next year. Leukemia can be cured but it is 10 years until a doctor would dare use that word. 10 years of watching, worrying and waiting. And even then the majority of these children will be left with serious long term damage and greater odds of developing further cancers. I remember during those early days, we were told over and over that we would find our "new normal" ... well screw that ... I will NEVER accept this, it will never be normal, never! And for those whom have said that leukemia is 'the better cancer' .... bite me!!

Thursday, March 6, 2008

Puff the magic dragon

Another Thursday and you guessed it another day at the clinic. Scott's counts were good, he had an anc over 8000 due to the steroids, platelets and hgb both within normal range and a higher than normal white blood count. This has me a little spooked but nurse Vikki told me not to worry. His biliruben is also a little high again, hopefully it will come down within the next two weeks or we will, once again, be facing the dreaded 'half dose'.

He also had Pentadamine, the breathing treatment which should protect his lungs against a particularly nasty form of pneumonia.

Here he is, looking mighty pissed off, puffing up his breathing bong ...

He is definately out of sorts today, thoroughly fed up with this whole cancer experience, moody, withdrawn, tired, aching from chemo and just mad at the world.

Sadly one of our little friends is in intensive care right now. Little Kaylie had only just finished an aggressive protocol for infant ALL when she was taken ill with a severe allergic reaction, probably Stevens-Johnsons Syndrome, and likely caused by the drug Bactrim. She may also have aspergillus, a type of fungal pneumonia which can be difficult to treat. She is a beautiful little girl and her Mom and Nana were the first people we met when Scott was diagnosed. So we spent some time with them up in intensive care, it's heartbreaking to see Kaylie on a ventilator and so ill, I know Scott found it a little scary, but still, we needed to see Kaylie and her family and Im so glad we did. Hopefully the next time we see her she'll be making big steps in the right direction. Get well soon Kaylie!

Also our good friends Susan and Taylor dropped by to see us which was wonderful. You might remember me talking about them before, Taylor was diagnosed the same day as Scott with lymphoma. Well believe me, you would never know it! She looked a picture of punky loveliness, all radiant and glowy with lots of multi-coloured hair, which matched her tartan mini skirt just perfectly. She gave Scott a Valentines 'Shining Star' dog and he could hardly make eye contact with her without blushing. SO cute! It now has pride of place on top of his playstation. Thank you Susan and Taylor. We love you to bits!

Well must go now and try to cheer Scott up a little, and please, keep Kaylie in your thoughts.

Thank you.

Tuesday, March 4, 2008

Scott loves Banksy!

Major Tom to Ground Control ..

Scott finished his last steroids this morning thankfully but it will take another few days for the effects to leave him. As usual his face is all red and puffy and he feels dreadful. The vincristine has hit hard again and he is getting through a fair amount of codeine w/tylenol to try and relieve some of the pain. It does work but only kills the pain for a short time. It also 'zones him out' which he doesnt mind, however I do. I hate it. He is also chugging back benadryl every night to help combat the insomnia caused by steroids. Benadryl is an allergy medicine but is recommended by the doctors as it also helps to induce sleep without the patient becoming dependent. Fortunately the pain is starting to leave his body. Tomorrow and Thursday it should ease considerably and hopefully be gone by Friday giving us 13 lovely days of a pain free, fat face free, and happy Scott.

We got word a few days ago that we have been accepted to Camp Boggy Creek (near Orlando) for a family retreat weekend on the 14th March. It sounds like a lot of fun if a little 'Butlins 1970s' ish. It said on the info sheet, 'wake up at 7am to take your kids to the morning manatee'!!!!!!!! That set my warning bell clanging, for sure. It also said, 'come ready to sing songs, play games ..", hahahahahh, cant wait for this photo opportunity of David giving us all a rousing chorus of Kumbaya. They do have archery and a zip line though so maybe we won't accidently not hear the 6am wakey-wakey-rise and shine, get up y'all whistle, after all.

Derry is doing great with his new hockey team and I am so proud of how fantastic he is starting to look on the ice. Last week he attended two 'Power Skate' classes and he also had team practice on Sunday. I have posted a couple of photos, nothing brilliant, for one thing it is very hard to photograph the ice, due to glare, low temperatures and also with the kids moving so fast. More importantly, Derry hates me taking pictures so I try to limit it to just a couple. The photos are his new team, they didnt do anything fancy this week, the poor kids just went up and down, backwards, forwards, faster and faster, they were exhausted. This week he will have one Power Skate class, team practice and his first game. I'm hoping that this season won't be quite such a whitewash. We have a new head Coach who will not tolerate the favouritism and cliqueishness that was in evidence last season. He has gone to great lengths to ensure a good balance of players, however due to so many children trying out, being placed, but then not showing, we could see team re-shuffling in the following weeks. Even still, it's good to see fairness this year!
Well thats it for now, Derry will be home in a minute to hijack the computer so I'd best sign off. Thank you for the birthday messages, I had a very nice day, along with the gifts from David I also got (with the birthday money from my mummy and Eric) Amish Society by John Hostetler, Anthropology and Modern Life by Franz Boas and the book from the TV series Ghosthunters, yeah I know, silly huh! LOL. I also got a Miracle Bullet WHICH IS GREAT! I love birthdays. :)

Saturday, March 1, 2008

When you're older.....

Just a quick HAPPY BIRTHDAY!

Today is Stephanie's birthday and she's a bit traumatized by being "almost 40" (never tell a woman's age, but she'll be that next year).

Happy Birthday to our mom, wife and head spaz of the household. I love you!

(I even picked out great shoes and a purse for her pressies)

But even on such an upbeat day, it seems sad thoughts can find us at anytime, even when we least expect it. Stephanie was stirring up her coffee. Me watching Scott play SSX on the PS3, Derry slugging along getting pwn'd by a Level 70 in World of Warcraft, and she say "my first birthday without a card from my Dad". Sort of caught us all off guard I believe.

Off to pick up the "custom ordered" cake for the day.