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He is definately out of sorts today, thoroughly fed up with this whole cancer experience, moody, withdrawn, tired, aching from chemo and just mad at the world.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

Scott in the bath (wearing my oh so sexy shower cap) with such a swollen head we thought it might explode!! If you look close at his right shoulder you can see the scar where his port was inserted and attached to an artery.

Our pretty kitties ...

Thankfully Scott is feeling much better, the pains have all gone and his body is slowly shrinking back to normal. He still looks like a hamster though and weirdly enough is starting to behave like one too.
A couple of weeks ago I noticed that he had taken my “Happy Harvest” (ooh Sandie is going to love that) picnic basket from the kitchen and put it in his bedroom and was using it as a little table. It looked a bit gay but I thought it best just to keep my mouth shut. So anyway, today after a trip to the shops with David, he comes home with a couple of huge stickers with a devil/fox mutant sort of thing on them, and asks if I wouldn’t mind painting the picnic basket black and then putting the stickers on it. Okay fine, at least it wouldn’t look so damn gay! So I get the little Happy Harvest basket and go to remove the lid and find it jammed full of every treat he has been sent in recent weeks from his Angels. Also squeezed in were a box of Swiss Rolls, umpteen Pez dispensers a family size Doritos and nine packets of Funions.
Most definitely hamster behavior wouldn’t you say!
Oh but its okay. There was method in his madness. Yes, what a wise and worldly child I have raised.
His reasoning … he was preparing for the “Hapocolips”!!
I am still gob smacked yet strangely comforted in the knowledge that should a disaster of yet unknown origin befall humankind in the coming days WE ARE READY!

Scott did okay at clinic this morning. His anc was over 7000, probably higher than it has been since diagnosis. However the platelets took a dive (which makes me very nervous) but our lovely nurse Vikki made me look into her eyes whilst she lectured me on how good everything looked.
Scott still feels horrible but the pain is starting to ease now so hopefully he's over the worst. Until next time at least!!
He is still very hungry and presently fluttering his freakishly long eye lashes at me, pining for pizza. Thank goodness Pizza Hut take credit cards so we dont have to spend real money!

Well life continues to crap on us and good old Homeland Security/Immigration have managed to screw up YET AGAIN something which should be incredibly simple. Well I guess it keeps those amongst us with limited brain capacity in a job. Poor David is having a meltdown and stealing my pills. Derry thinks its all very funny and has started speaking with a Hispanic brogue. Scott is looking forward to real chips and chocolate and sleeping on his Nana's floor again and as for me, hell, my baby has cancer; the dude with the deportation stamp wont be winning my Halloween fancy dress competition anymore.

Besides which, we've jumped over them already, just to get to the fight!

Happy Hallmark Day to you all.

Just a quick update on my poor little man. The steroids and vincristine effects are back with a vengeance and Scott is feeling dreadful. It seems that with each new cycle the side effects worsen. So much for maintenance being easier. It isnt. I think I have said this before but although the high dose chemo and radiation are now behind us (hopefully) his body and mind are so exhausted that even the maintenance drugs have now become a real challenge.
His mood swings from the steroids are distressing; tears, anger, sadness, they just roll on, one after the other. Then there is the constant hunger, swelling up his face and body and fighting with the pain of the vincristine. How cruel to have such a raging hunger combined with pain in his jaw and head. He is also very aware now that the pain will worsen in the coming days, moving from his head, down into his back and eventually his legs.
Until recently he never took pain medication or anything to help him sleep, he just bravely soldiered on. Not anymore. Now he wants to be knocked out, he wants to sleep and put the clock forward until the pain and distress start to ease again.
How sad that a child wants to sleep through even a moment of what should be the most precious days of his life.
He has become very clingy, he has always been that way but now much more than ever. I dont mind, ofcourse I dont mind, its good to feel like a have a purpose and can comfort him but at the same time I wish he could be out playing in the sunshine, rolling in the dirt and getting all scratched up, not clinging on to me and wishing the days away.

clinic

All went well this morning and we could go ahead with another full dose of the lovely vincristine. His counts were a little lower than I was hoping for but nothing peculiar thankfully.
Anc -> 1327
wbc -> 2.2 (normal 4.5 - 13)
hgb -> 12.6(normal 12 - 16)
plt -> 245 (normal 150 - 450)
His biliruben was 1.2 (normal 0.2 - 1.2). Very pleased with this result as the bili was what was screwing up the dosage for so long. Nice to see it at a decent level for a change.
Scott also had IV methotrexate and his monthly breathing treatment, pentadamine. This was his second dose of pentadamine and Scott found it much harder to do than last month, he was coughing and spluttering, his eyes were watering, he was white as a ghost. We had a bucket handy but fortunately he didnt need it and managed to get through the session. He felt very ill for a while and still has a dry throat and cough but is looking a lot better than he did a few hours ago. As you can see from my awesomely proffesional home movie ,Springsteen cheered him up with a bit of a wash after we got back from the hospital.
We also start the steroids again today and the 6mp every night.
Well, well, gotta go, "time for tea", said Zebedee.
Oh and before I go, please look in on Mathew and wish him well. I was very pleased to be able to see him for 10 minutes this morning before he had surgery. Considering what the poor little guy has been through lately he looked very well and had a big smile on his face. He's a bobby dazzler for sure!!
http://www.caringbridge.org/visit/mathewjgliddon

Easy like Sunday morning

Scott has been almost like his silly old self this weekend, it's been wonderful. Lots of giggling and singing and talking about grits and sweet potato pie in his southern accent, much to David's annoyance!!

We havent really done anything of note, just kicked back at home. Derry has been plugged in to Garys Mod or Turok, David into Warhawk and Scott is going through a Crash Bandicoot faze. I am surrounded by gamer nerds or 'pwn stars' as it is termed nowadays. I guess I am just as bad at being 'plugged in' but with me it is trawling through the internet researching anything leukemia related, learning about new drugs, reading blogs, generally scaring the living daylights out of myself.

We really do need to get off our butts, give ourselves a shake and enjoy the sunshine and good days but I think we have all come down with a touch of agoraphobia. Cant go out too many germs. Cant go out Scott might puke. Cant go out the sun is trying to kill us. Cant go out clowns will eat me!

Och well, we may have become the Worlds most boring and anti social family and yes, its true, my boys may grow up and invest in trench coats and a stock pile of grenades but at least Scott wont catch a fever!!!!! Hopefully.

And here is the man himself, enjoying a nice afternoon being groomed by the cat ....

And before you ask, no, Springsteen does NOT have germs!