Sorry for being such a terrible blog-updater! Anyway, just wanted to say that the surgery went perfectly on Friday. The port was removed completely (sometimes part of it becomes attached and cant be taken out!) and the old scar tissue was also cut out and a new smaller and neater scar has taken its place. Scott had wanted to keep the port as a memento but there are strict rules that mean the port is sent to pathology for testing and then destroyed. The surgeon did however take a photo and give it to us. Its gross, with little bits of 'meat' attached to it. Its nasty. I think David is planning on scanning it to post on here for Sandie to see. LOL.
Just a very quick update to let you all know that Scott had clinic today and his bloodwork looked pretty good. Everything was much the same as last month with the exception of his lymphocoytes which were low - probably means he is fighting a bug of some sort, or could be allergies. He also saw the pediatric surgeon who placed his port back in January 07 at diagnosis. It was just a brief visit to discuss the surgery to remove it and for the doctor to check Scott over. Surgery is planned for Friday at 7.30am!!!!!!! UG. It seems strange that we have reached this milestone. Im not superstitious, but for some reason, it bothers me. I remember all too well the day it was 'installed', the day following diagnosis, just sitting waiting for him to come out of surgery. He also had his first spinal chemo at the same time. It was a nightmare. I couldnt stop crying. And now it's coming out. Wow.
For those not familiar, this is how easy it is to draw blood, give IV chemo or nutrition (such as TPN), or antibiotics using a port...
Saturday marked the 5th anniversary of our landing on the shores of the US. Woohoo, do you have a flag? LOL. Sandie will be the only one to get that I'm sure. David surprised us with this beautiful, diabetes inducing, Scotland cake ...
Derry had a hockey game on Saturday and got the only penalty for a tackle which was not really illegal its just that the other kid was so small he got kind of flattened, and I guess the ref had little man syndrome (cos he was a shortarse too) and decided to bitch slap Derry with a "2minutes, feel shame" thing.
We found a new species of frog!!!
After sussing each other out for a while, I am now collaborating (long word for 2 plastic rock star gamers hanging out together) with the incredible, and one of the best 'plastic rock star' gamers in the world, my rb bff friend Angel! David, Derry and Scott are slowly becoming deaf and may kill me if I screech 2 Minutes to Midnight again, but hell, its been fun while it lasted!
Jake met Dave ...
No photo's - sorry - but after nearly 3 years of being unable to ride his bike, yesterday Scott dusted it off, dragged it out the garage and took off!! I would have taken a photo but a) it seemed so normal and natural and it wasnt till after he'd gone that i thought 'whoa dude, Scott just took off on his bike!!' and b) was too busy singing 2 Minutes to Midnight.
Well I was just about to post this when Scott got out of bed, grunted, farted, giggled, then picked up his guitar .. nothing like a rousing rendition of Ring of Fire to start off the day! UG!
I'm still struggling to come up with a decent post about U2 without sounding like a complete sappy girl. I'm not going to give a review of the show because I cant remember any of it, even at the time I wasnt paying the blindest bit of attention to the music, was just lost in the 'OMG!!!-I'm sharing a field with Bono!!' - ishness of it all. That doesnt make sense does it?! LOL. Well it does to me.
I think that part of the reason why it was so extra-special and exciting was that it was such a huge surprise and so last minute ... oh and not having to pay for any of it - that was nice too!! We knew that U2 were coming to Tampa, but we also knew not only the price of the tickets but also how hard it was to get hold of them, and had written it off as something that simply wasnt going to be happening for us. That is until the Childrens Cancer Centre called me on Thursday afternoon!! It turns out that a very generous man connected with the stadium had some extra tickets and had given them to a couple of local charities, and then, someone at the CCC (who obviously must have some very cool psychic abilities, and had picked up on my 'I NEED to see Bono vibes) picked up the phone and called US! Poor Sharin, I think I screamed a bit. LOL.
So anyway, Friday comes and I'm a mess. Too fat and all my clothes were horrible. My hair wouldnt behave, I sneeze mid-mascara and have a meltdown, the air conditioning was working overtime and still I'm sweating buckets. By the time we leave the house (late) everyone hates me. As luck would have it though, our lateness was perfect as we missed the crazy traffic, cruised right on up to the stadium, flashed the VIP parking badge (oh yeah, so cool) and had just enought time to grab some U2 goodies and settle into our luxury suite (oh yeah, so cool ... again!).
You know, it would have been a great night even without any music. I'm sure Im was not the only person there who could have happily sat and stared at The Claw all night. It was beautiful, all flashy lights and glowy and alien-esque. Kind of like the spaceship in Close Encounters, you didnt need to see the aliens - or the band - it was cool on its own.
We shared the suite with another pediatric cancer patient and his mom, and some really nice kids from a local childrens home - they were SO well behaved and were obviously very, very happy to be there. It was a great atmosphere, just staring in awe at The Claw and watching the stadium fill up until every seat in the house was taken. All 75,000 of them. Wow.
A band named Muse from England - oh it was so nice to hear a familar voice - opened for U2 and they were incredible. My god, that dude could sing! What a voice.
I think I love him.
Then, came U2. :) OMG! Bono sang Breathe and it was all like still and quiet, yet electric and loud and supercharged awesomeness too. If you see what I mean. He was singing, the Claw was pulsating, The Edge was doing something magical with his guitar and all was right in the Universe. LOL. Am I overdoing it?! :) Truly, it was THAT good. And sorry, I know I havent even mentioned David, Derry and Scott yet, they were there I promise, but I think I was just wrapped up in my own little world so much that night. Is that so wrong. I dont think so. I do know that they were loving it just as much as me, well maybe not Derry because he's so cool and doesnt get excited, but anyway, they were there and they were having LOTS of fun too.
So, the band played on ... what they played I cant remember, its all a bit of a blur. Everyone in the stadium was rocking out. It was cool. Mr Scaglione, our kind benefactor, and some of his friends and colleagues came to see if we were okay and if there was anything more they could do for us .. Im telling you, these people were so generous and so interested in the children and genuinely concerned about what they had all been through, or were going through and really wanted to make sure they had the time of their lives. In fact, Mr Scaglione pretty much hung out with us for the rest of the night and really bonded with Scott. It was very touching.
Then, somehow, a backstage pass appeared for Scott to allow him to get through the bowels of the stadium and into the pit via the backdoor, so to speak. (By then the children from the home had left as they had a curfew and the other child wasnt well enough to go down to the Pit.) I thought he was going with Mr Scaglione and his friends but before you know it, they're dragging me (kicking and screaming I tll you) along with them too. So we scurry through the building, passing security, bodyguards, bono's cars (!!) and all sorts of backstage rock-star coolness and pop out right below the stage. We get there mid-way though Sunday Bloody Sunday and really, what more can I say. Cool man. It was cool.
Thank you Mr Scaglione and Childrens Cancer Centre. We had so much fun.
Scott and Mr Scaglioni (aka Mr Awesome!)
The Claw with fancy extending disco ball/flashing light thing
BONO!!! taken from pit, underneath claw/disco ball thingy
I have no idea where to start. I'm gobsmacked. Its been an incredible night thats for sure but I dont think I can really put it all into words just yet. For now I'll just post a picture of Scott and our new friends and some of the most beautiful people we have ever met ... and look close, do you see whats hanging around Scott's neck ...
And looky who we ran into as we were leaving ... Sully!!!! And wow, he couldnt have been more awesome. It was the icing on the cake. Thanks Sully, you made Derry's night!
Scott had clinic today and perhaps, hopefully, his last lumbar puncture. We were beyond nervous at what todays bloodwork would reveal due to the vast number of bruises that have been springing up on Scott lately. Not just the number of bruises but the time in which they were taking to fade. I didnt write about it, and havent updated on Scott in a while, simply because I "didnt want to go there". You know me, head in the clouds or buried in the sand, reality is often best avoided.
Anyway, his bloodwork looked great!!!! Suprisingly his platelets were very much within normal range, so I guess the bruises really did come from getting slapped about a bit by his older brother - lol - but why they have lingered on and on I dont know. His haemoglobin was 14.4 (normal), wbc 4.9 (low end of normal) and anc 3319!!! Wow for the first time in almost three years SCOTT HAS A NORMAL IMMUNE SYSTEM! (His normal anc's in the past have been artifially elevated due to the prednisone.) He also had decent monocytes which always make me happy. His doctor has given us the okay to wean Scott off Paxil which should mean a drop in weight very soon (YAY!) and his pentadamine breathing treatment is also seen as not necessary anymore.
After clinic we headed over to the day hospital for his lumbar puncture which oddly enough was done by the doctor who originally did the bone marrow aspiration which led to his diagnosis. The procedure went well and so we now wait and hope that no cancer cells are seen in the spinal fluid. If this is clear we can make an appointment with the surgeon, who placed his port almost three years ago, to have it removed.
I still don't really understand why ports are removed six months after treatment as this is not a magic number by any stretch of the imagination. What it does mean is that if the child has been off treatment for 6 months and doesn't relapse they are in GOOD remission but there can still be residual disease which can show up again many years following the end of therapy (ie relapse). Children that relapse in the bone marrow after being O/T for 6 months can try chemo again rather than face the absolute horror of a bone marrow transplant. Most relapses occur during treatment or within the first year but children are not considered cured until they have been in remission for ten years.
I'll leave you with a couple of photos of Scott prior to the lumbar puncture and another of him sleeping off his "lovely propofol" - damn its scary how much Scott likes that stuff! The doctor with him is Dr Wynn, a truly brilliant doctor and our hero.
Helpful autoerotic asphyxiation alternatives from The Bloggess.
Dont read whilst your littles are around or they'll come running wanting to know whats so funny and if you're ok and you'll have to lie or do what I did and say oh nothing, just reading an interesting article about INXS and your innocent child might just reply with oh yeah the lead singer wanked himself to death, why do people do that? OMG.WTH!GRUP**'FXNBP#88@DDHpL!!!!!!!
We've not updated for a couple of weeks, but today brought some sad news. We had to put Jingle to sleep today. He had fought a corneal ulcer in one eye most of the summer. We'd found he had high blood pressure which was complicating that problem. Then his blood test several weeks back showed decreased kidney function. Since this past weekend, his health deteriorated fast. By this afternoon, he was really bad. So shortly after 5, he was put to sleep.
Scott and Derry are both very upset. Jingle was a very old cat - best we know he was just around 20 or just over 20. Scott can't remember not having Jingle, and that cat was beside him all through his treatment. Derry can tell the story about Jingle showing up at their house in Aboyne on Christmas Eve well. Stephanie recalls him hopping in the window, parking by the fire and proclaiming their house as his.
I remember the first time I ever walked in her house in Aboyne. In less than 30 minutes, Jingle was on my lap and lying down for a nap. He had me right off. Stephanie said more than one person made comments about Jingle through the years and his "less than perfect" looks.
We think he was one of the best cats ever. An old scabby-tabby-toonser that never let you down.
VISA so kindly bought us a new playstation (and yes mum I know its an indulgence and yes mum I know its not very grown up to put video games before bills :) No more RockBand on Scott's blog I promise. But damn I love this game. Call it post traumatic stress relief, call it 'mummys lovely big chunk of prozac', whatever it is, it works wonders.
Gotta go now, must knock the legendary wesker off another top spot.
Scott was diagnosed with T-cell Acute Lymphoblastic Leukemia (T-cell A.L.L.) on 01/25/07. T-cell is an aggressive leukemia and Scott is considered a 'high risk' case. His white blood count at diagnosis was 89,000, he had a mediastinal mass and had also developed sudden and severe petechiae due to lack of platelets. There was no CNS involvement.
His chemotherapy treatment began on 1/26/07 and is a 108-week-long protocol of high dose chemotherapy, steroids and cranial radiation.
Scott is treated by Doctor Tebbi at St Joseph's Childrens Hospital in Tampa.