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 ...

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".

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.

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.

Edit.

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.

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.
http://www.caringbridge.org/visit/mathewjgliddon




















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.

ADDED BY David:

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.

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 ....

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!!

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.

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. :)

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.

Chumbawumba

I think I did post this a while back but after reading Angel Laura's comment thought it high time to post it again..we love this song too and I remember us singing it with great gusto during an inmate stay for methotrexate ..Tubthumping..



And Sandie.. 'Cooking Mama'???!!!
LOL. You spaz!

Ok well I’m going to attempt an update but it would seem our computer is dying so I’m not sure if this will work or not. Just typical that this should happen as Scott starts on-line schooling!

Clinic was bursting at the seams today and was very stressful, particularly for Scott. It is incredible how in just one small hospital there are so many children being treated for cancer. We did see many of our friends today which is always nice, yet there are so many heartbreaking worries and stories. Everyone is on edge, waiting to hear about blood tests or scans, everyone holding their breath, waiting to exhale. There is so much pain and worry crammed into that clinic yet at the same time lots of hope and friendship and even smiling faces – maybe it’s just the drugs we are all on!

So anyway, we get there and Scott has his finger poke to draw blood for a cbc and chemistry. His port isn’t accessed until the counts are back and okay to go with chemo. Today his poor fingers were so calloused from so many pokes in previous weeks that it was very hard to get enough blood to flow. The nurse squeezed and squeezed, tried another finger, more squeezing and still no blood, after the third attempt she did manage to get enough drops for testing but by then Scott had tears in his eyes and was scunnered before the day had even begun. She suggested that from now on, due to his calluses, that we use a needle and draw from his arm but he still has very bad memories of this during diagnosis and no way was he agreeing to it. Then we are told the computers are down, his ID card had gone walkabout and it may be a bit of a wait. Oh goody. Scott is pissed off, there are no free beds, the waiting room is spilling over and someone had stolen his identity. Hurray!

So we wait. Like I said we saw so many friends today so at least there was always someone to talk to. Not that our conversations are all that carefree and cheery mind you, but we do talk the same language.

Anyhoo, the bit you are all waiting for, or at least I hope you are, if you aren’t, why are you here? His counts… all good thankfully. Anc over 2500, platelets 252, hgb and wbc low but okay, even the bili behaved itself once more and was within normal range!! Yay for Skittles!

Finally he gets a bed and chemo (vincristine and methotrexate) arrives. He gets accessed, but guess what, after such a long wait his emla (numbing cream) has worn off. Now I think Scott was a bit of a big sissy, a big girls blouse extraordinaire, and it wasn’t nearly as painful a procedure as he made it out to be, but then again what do I know? So anyway, he gets his medicine which takes about 40 minute’s altogether and then is de-accessed. Lots of tears this time and I wasnt at all sure if he was faking or not. But he played it well and before you know it I had promised to buy him Red Faction 2.

As we are waiting to leave we run into Karen, Mathew Gliddon’s mom (my my, aren’t I going all American!). She says to Scott, “I love your chemo pants Scott. Ooops, sorry I meant to say CAMO pants”. LOL. Scott thought this was so funny and now plans on wearing his ‘chemo’ pants every Thursday. But this is what its like. Chemotherapy, radiation, sickness and tummy ache, scans, infections and fevers, blood tests, remission, relapse, and sometimes we even dare to think about CURE. It’s hard to shake these words from your head.

Finally we get home and it’s been rough. Lots of tears, exhaustion, emotion, and even diarrhea thrown in for good measure. And to wash it all down, a syringe full of chemo.

Well, I don’t want to end on a downer. I am just tired and fed up. So hurray for today and good counts and chemo. Can you imagine what this post would have sounded like if his counts had crashed again? My goodness, it wouldn’t have been pretty.

Tuesday night ...
Thunder and lightning is raging outside, it sounds like the Battle of the Somme with added fireworks. Poor Springsteen must have been under a chair in the garden when it started and was too scared to make a dash for it and chance getting stuck in the cat flap. When I opened the door he bolted in, all big eyed and soggy, jumped on the table and flopped himself down on Scotts latest work of glitter art. Scott is gonna be so not chuffed in the morning.

Mind you, there'll be no more pansying about with glitter from now on. I got word today that he can start one of his on-line classes tomorrow. Something else for him to be miserable about. I cant remember if I wrote previously about his school situation but to sum up his homebound teacher has been withdrawn and the doctors want him back at school. Ahahahahahah. I dont think so! Hell would have to freeze over before I would even consider putting him in our local criminal training facility/drug dealer 101/how to be a wigger (my apologies if that is offensive to anyone, it is just the way it is and no-one has yet invented another word that would suffice) otherwise known as Middle School. Apart from the obvious problems such as the very long day (Derry leaves at 7am and doesnt get home until 4.30pm) and the germs there is also the added problem of certain children of that age and their wickedness. Even Derry has come across problems, apparently, according to some children, cancer is highly contagious therefore Derry is a nasty little plague carrier!! Yup, fascinating, you learn something new every day huh! So NO, I will not be subjecting Scott to such things. Derry handles it fine, he is almost 6ft tall with a look that could turn milk sour - I am so jealous! Yes I could send Scotty to school and could stand up to any trouble but I dont have the energy right now to be dragging little thugs off the bus every other day and taking them round the back for a "quiet word".

I bitched and moaned to the doctors but I was fighting a losing battle, so after sulking for a bit, then realising I am in no way capable of being a teacher, nurse and mother, I have enrolled him in Florida Virtual School. He will be studying language arts, maths, science and Spanish. These 4 subjects should requre between 20-22 hours per week of work. It wont be easy due to Scott not being well enough for one week out of every three, but we'll manage just fine.

Wednesday...
I have just had Scott's new Language Arts teacher on the phone and she sounds like a dream come true. She talked to Scott too and Scott was like "wow, I was expecting an ogre", I have no idea why he thought that but he is now happy and content with his kind and cool sounding teacher. She will activate his class and he will be able to start later on today.

Tomorrow is Thursday. Yes, try as I might to alter the natual weekly rhythm, Thursday still keeps coming around on time. If his anc is over 750 and platelets over 75 then Scott will get his vincristine and methotrexate and start again on the lovely steroids and 6mp. So hoping for good counts yet boo-ing and hissing at the thought of a sad and sickly little boy for the next 7 days.

Before I go, thank you so much to our chemo angels, Laura and David, and all the love they keep sending to Scott. Your letters, cards and gifts make a huge difference and truly brighten up his day. I know that I am worse than dreadful at staying in touch with you, but just know that we all appreciate you very, very much.

Over and Out.

The Sunshine State

Our brave escape and great day out didnt go quite according to plan. LOL!

Musical Interlude

WARNING - Side effects may include, but are not limited to, moderate to extreme sweating, increased heart rate and/or palpitations, loss of conscioussness (fainting) and excessive salivation.

Another Thursday, another Happy Chemo Day!
All fine and dandy in the blood department this week. Scott had a whopping anc of 3384, a pretty incredible result just a few days past nadir. All other major counts (wbc, plt and hgb), were also good and were in the low end of normal range. I think this is the first time this has happened at this stage in his cycle since he was diagnosed.
But you know me, manic depressive to the end, I had to ask, “What’s wrong, why are his counts so normal”, Vicki just smiled and told me she loved me even if I was impossible.
So we now have a week with NO pills and a happy, content and healthy Scott (well apart from having cancer anyway!!). Usually the times he is feeling good are the times he has no immunity and has to stay in his bubble.
So I mentioned to Scott that perhaps we should venture outside this weekend, face this germ infested world of ours and have a little fun.
But we’ll see.
Maybe we should just stay home, put our feet up, have a nice cup of tea, and listen to Morrissey instead.
Oh and one more thing, I almost forgot Derry’s good (LOL) news. He had try-outs for spring rec league about 10 days ago and HE GOT PICKED!!!! And not for the Peewees this time, oh no, this is the big time, pant wettingly scary, don’t screw up little newbie, big boy hockey!!
Poor Derry. This is going to be brutal.

Quick USCIS update

Just to let folks know, the person we got face-to-face at Immigration thought everything was wrong as well. She even proactively stamped everyone's passport valid as a permanent resident for and additional year, and change the information in the system so we can sort out the wrongly rejected papers.

More later.
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Sent from my BlackBerry Wireless Device

Em - UH - Gray - Shun

Stephanie mentioned another snafu with the lovely folks at USCIS -other wise known as Immigration.

Entering as a fiance, as she did - along with the boys having status with her as minors, which they do - required a lot of work to get the visas and green cards.

They all got green cards (legal "residency") on the exact same day, as the boys HAD to be on her paperwork since they were minors.

The whole process gave them "conditional" residency for the 1st two years after receiving green cards (which was actually 16 months after their arrival due to processing times. So that runs out on 2/24 this year.

No problem, as we filed the papers about mid-January. A simple 2-page form to remove conditions. Sent with all the documentation and copies of their green cards. Then we get a notice which said:

"Scott and Derry (it has their full names) can't be on the same petition, as they did not gain residence on the same day or within 90 days of Stephanie" (that isn't verbatim, but it is rather that simple.

I went "huh?"

Their green cards came on the exact same day. Have the exact same "resident since" date. And copies were included, which were also sent back with the original envelope.

Amazing huh?

I long phone call, which ended in me getting disconnect "after hours" with no progress (causing a mental breakdown on my part), and another by Stephanie the next morning didn't solve anything.

So tomorrow morning we have an appointment at the local Tampa office to, hopefully, get a person that can tell the dates on all 3 cards are in fact the same. Otherwise they say we must file three seperate petitions at $545 each.

I'd laugh if it all wasn't so sad.

But of course they're part of Homeland Security, and are protecting us diligently against the bad guys.

We'll update after our visit, if we don't get put in the clink.