Sad Day

Sad because of what Stephanie posted below.

Sad because we sit in wonder about Scott's counts.

Sad because Matt Gliddon has relapsed.

Sad because it seems too many of Scott's normal "clinic mates" are inpatient this week.

Sad because I took Stephanie's dad to the airport this morning. I hate when people leave from visits.

We'll post more about the few things we did while Graham was here. He got to experience SmackDown, hockey, a boat and beach and clinic. We just have to hustle around to get to two Christmas parties tonight, and get Derry dropped off at his teammates house for hockey (he'd rather hockey practice than party).

Coincidence?

I have just been told by Callum, my x husband, that his best friend and co worker's son has been diagnosed with leukemia also. Very early days and not clear on the exact type yet.
The two of them worked together for about 10 to 12 years, they were lumberjacks and exposed to constant exhaust fumes (benzene!), both Scott and the other child were concieved during this time. The only other man they worked with died of lung cancer.
I had read before about pre-natal paternal transmission and thought this could be the cause of Scotts leukemia. I never really dwelled on the cause too much, it didnt matter, only cure mattered, and still does.
This news is very sad but also very eerie too.

The silicon chip inside my head is switched to overload

I dont like Thursdays.

Yuppers, its that day again and Im so damn scunnered Im not going to write much. Scott was supposed to start his 3 week cycle today, but you know what they say about the best laid plans and all that. His counts dropped from last week and his wbc and anc sucked. Well thats it, Im not saying anymore, or one of you would send the men in white coats to come get me and whisk me off to Bedlam.

Leukemia is one mean bitch.

click me

Pat is doing well in the finals but its very close. Just a few days of voting left, please click a little when you have a moment.
Thanks.

EDIT NOTE: I was typing away here at the same time Steph was. Just read both.

Not much word here since Thursday, as we've been rather busy. Friday saw us headed off to another Lightning game, which turned out to be another win against Washington. Friday night was Tampa Bay Fights Cancer night at the game. This was sponsored by the Yerrid Foundation. The same "Yerrid" (Steve) that put on the fishing derby last weekend. All the support groups were present. The Children's Cancer Center. The Pediatric Cancer Foundation. The Children's Dream Fund. The Leukemia and Lymphoma Society. Free shirts. Free food. We had a blast, even though we dumped Derry at his hockey practice (his choice) and took my friend Brandon along for the game. A special thanks to a person that donated primo seats in the AFS Club to us for the night. Stephanie manage to find a nice comfy couch where she could see through a portal and watch the game on the massive HD screen the Forum installed above the ice this year. It also allowed her to people watch and visit with her favorite NHL ref, who I think thought Stephanie was up to no good when he saw a strange man sitting next to her (That would be Brandon).

Saturday was a full day as well. Stephanie blew up the vacuum. Me and the boys went on a jaunt to a local store to meet Batista, one of the WWE wrestlers.

What a mistake. I never knew so many people showed up at appearances by these guys. The boys said they didn't want to wait in line for 2 hours to have the guy sign their dvd's. So we bailed after sneaking into the produce section of the market and snapping as good a picture as the 2-hour wait would have provided.

After that, we were off to Derry's hockey game. A minor miracle happened - they didn't lose! They didn't win either, another tie with the Black team, which has an old neighbor on it. Derry attempted to tackle Bryan (the old neighbor) during the game. The refs didn't call a penalty. He also did some smack-talking to another kid. He told us he said something bad to him, but won't tell us what. At least he's starting to play with some attitude, which is always needed in sports but also a fine line to walk.

Rushing home from there, I abandoned the family and headed to the Brandon Foundation's Evening of Hope. These are the folks that made the contacts to get Scott's bed, and are working on some other things for us. It was a swank affair (I had to wear a suit) designed as a fundraiser and recruitment vehicle for the Foundation. It is amazing at the number of folks in our community willing to help perfect strangers. A pleasant surprise. I did barely miss out on my bid for a round of golf for 4 at River Hills. Have to work on that.

Yesterday was "prep day". Stephanie's dad is likely landed at JFK in NY as I write this. He'll get down to Tampa later today for almost two weeks. This meant we had to buy a new vacuum, which the price shocked Stephanie. I told her to remember that if she tried to blow up the new one. She also loved being dropped at Wal-Mart on pre-Thanksgiving Sunday. It took her 2 1/2 hours to shop. LOL. Yard work done. Deck cleaned. I think she's breaking in her new vacuum at this time.

That's all for now. Scott is feeling okay at the time. He seems to have "motor mouth" disease the last several days. Just won't stop talking all day long. We just waiting for Stephanie's dad to arrive. The boys can't wait, as they've not seen him in some years. But also because WWE Smackdown/ECW is tomorrow night here in Tampa, and we'll be back to the Forum to see it. Thanks to the TECO folks for allowing me to purchase tix in their suite. Being in a controlled environment like that makes trips to crowded venues much less stressful.

Well, Hell hasn't quite frozen over but its getting there. Derry's team, the Ghost Riders, DIDN'T LOSE on Saturday!!!! They didnt win either, but a draw is mighty darn good.




Scott has been feeling great all weekend (touch wood), but this is probably due to the ... GRRR ... half dose. We have been puppy sitting these last few days which has thrilled him no end and he is so excited as his Grandad is flying in today from Ireland. Also, we have Smackdown tickets for Tuesday!! I hope my dad isn't going to be TOO shocked at the mindless violence!
Well, cant blether no more, got to go and clean, clean, clean, I may even make a cake. Got to create the "good little housewife" illusion. :)

Stoned

Another Thursday, another visit to the beloved clinic. And yet again, high bilirubin.
I didnt make it to clinic today as I had a bit of a problem. I was rooted to the bed! I woke up at 4.38am and couldnt move, not only was I stuck but I really really needed to pee!! I wont go into all the gory details but it took almost two hours, and the threat of an ambulance before I just decided that I needed to pee more than I cared about fracturing my spine, so with a bit of a swear and lots of bravery (LOL) I just sort of threw myself onto the floor (in a dignified manner ofcourse) and crawled forth, toilet bound. And got stuck there too.
So anyway my wonderful husband gave me the day off clinic duty but before he left with the boys he gave me two magic beans (which had probably been sold to him by a rather strange and wizened old man down by the chemo shop). So off they trot, I swallow the beans and before you know it Im flat on my back, cant move a muscle and spaced out of my skull. I would tell you all about my wonderful trip but cant remember a thing except that my telly had morphed into some freak spilling portal. Oh well, maybe now I understand my sister a little better. Ahahahahaha, she's gonna kill me for that!
By the time David and Scott got back from the clinic I was feeling pretty darn chipper, poor David's nerves were shot at having spent 5 hours surrounded by nervous cancer parents and lots and lots of pesky little children, and Scott was having a full scale roid raging meltdown. Then Derry got home, grunted at us and plugged himself into the World of Warcraft.
Later David took me to the chiropractor and she had the cheek to tell me I "had a knot" .. snort... I dont think so!! Several dislocated vertebrae perhaps, but not a knot. She slapped me around a bit, gave me a bill (and David a lecture on magic beans!) and told me to come back in a few days ... for another bill!
Just another day in Paradise.

Click me!!

Scott has been feeling dreadful, if its not pain its sickness, if its not sickness its the doldrums. Not a happy boy these last few days.
Thats all for now, we are all worn out and a bit down. I'll update tomorrow after clinic.
Please keep voting for our friend and hero, Pat Pedraja. I am so thrilled he won the Young Wonder's category, he is now up against the adults in the finals. Thanks for all your votes, keep them coming.
www.cnn.com/heroes

More on Thursday's clinic..

Scott's counts were fine and his anc was over 750 so we could go ahead with his intrathecal methotrexate which is done whilst he is asleep under anaesthetic. The procedure went well, a small amount of spinal fluid was extracted, which will be tested for leukemia cells, and then chemo was injected into the spine. However, and this has happened before, when he came around he was extremely emotional, depressed and weepy. This was probably due to the anaesthetic and within a couple of hours he started to cheer up, thankfully. Even though the procedure went smoothly, sometimes it doesnt and requires a bit of 'wiggling about' to get the right spot, he still says his back is very painful. Hopefully it will settle down in a day or two.

We then went for chemo and again his bilibuben was elevated, more than twice the upper normal level. The protocol is quite clear, only half the dose of vincristine should be given when the biliruben is high. Other meds, methotrexate, 6mp and prednisone, remain the same. I am obviously very concerned, not only because his liver is struggling to process all that is going on, but these medications, the amount and their frequency, are tried and tested and I dont want to give the leukemia the slightest chance of returning. T-cell ALL is a very aggressive leukemia and requires constant high amounts of chemo, anything less than that gives the cancer the chance to re-group and attack.

When the nurse came to administer the vincristine I think I grumbled "its hardly worth it really" but she told me that even at 1 and a half milligrams its still a reasonable dose. His normal dose would be 3 milligrams every 3 weeks, pre-b and b cell leukemia is 2 milligrams every 4 weeks. Damn those t-cells!

So anyway, not much we can do about it, just worry.

Today Scott is laying on his lovely new bed watching Roseanne. His back hurts, his legs and feet hurt (from walking around at the fishing yesterday), his jaw hurts (from the itty-bitty half-dose, grrr) and he is mad and hungry (from the steroids). He is also craving pizza again. Today nothing less than Papa Johns will suffice, anything other than that may end up in a complete meltdown and a possible homicidal rampage. So Papa Johns it is.

Thanks again to the Steve Yerrid Foundation, we all had a wonderful time. It was staggering how much money, time and love went into making the Fishing Derby perfect for the children. The kids even got to keep their rods and they were given tackle boxes with weights and lures too. Both Derry and Scott used to fish for pike in the Scottish lochs and yesterday has certainly rekindled those cold, damp, mosquito ridden days which for some strange reason they loved so much. Boys will be boys I suppose!

I'll leave you with a few more photos. The man in the white sweat shirt hugging Scott is Steve Yerrid, such a beautiful person to be sure. I believe the man in the grey top worked for the fish and wildlife commission, he was very sweet to Scott. The final photo shows the end of the day when each child was invited on to the stage and given medals, there were no winners or losers, every kid got a real nice medal with 'winner' engraved on it. It's a good job Im so ice cold or I'd have been bawling my eyes out. :)

A Full Friday

Lots of things to talka about, but I'll give some brief updates. Scott's clinic visit went pretty well yesterday. He had a spinal and intrathecal chemo, so his back is sore. His bilirubin levels were still elevated, so the dose of vincristine was halfed. We're not sure what to think of that, but the docs says getting things balanced on the maintenance schedule takes some time. We'll see.

The voting seems to be going good for Scott's pal Pat. Just keep it up everyone.

Today was a good day, which found us across the bay at the Vinoy resort in St. Pete for the Steve Yarrid Fishing Derby. This is done for the kids and is part of a weekend-long set of events laid out to raise money for pediatric cancer research. I'll post more details tomorrow - especially about the companies and folks involved, but wanted to toss up a few pictures from the day. Lots of kids at the event, and some really amazing folks volunteering and helping out. Everyone involved was exceptionally helpful and made sure every single person knew the day was about the kids, for the kids and owned by the kids. They taught them how to tie knots, how to cast and how to properly hold fish. Then everyone would yell and get cameras around each time a kid hooked a fish. The energy from everyone was wonderful. A great day.

Scott with a Big 'un

Scott with a couple of Ice Girls

I'm the fat grey-headed one. Wade Boggs is the other guy.

Please vote for Pat

All these kids are heroes but I would love to see Pat recieve the recognition he truly deserves. Please, please vote! Only two days of voting left and every vote for Pat counts. Pat and his family are working to save the lives of leukemia patients like Scott. Also click on the video of him to see what a charming and beautiful person he is. Also, and it's not cheating, get click happy, you can vote more than once! :)

http://www.cnn.com/SPECIALS/2007/cnn.heroes/vote/inc_vote4q.html

Here they are at clinic this morning, both kids were having a tough day (more about that later) but at least they had a little time before their medications for a video game and a smile.

"I want a comfy bed"

That's was a request from Scott some weeks back. It was during a round of joint pain caused by chemo coupled with restlessness caused by steroids. We didn't "overthink" the situation, as it seemed temporary during certain phases. I guess it is fair to say it wasn't climbing up the priority list very fast for one reason or another.

Then a couple weeks back, two women showed up from the Brandon Foundation. They were steered our way by Anissa, who is the mother of a little girl named Peyton who is being tretaed for leukemia as well. This is a group that just helps folks with different things. I can't think of a more concise way to explain what they do (and I'll dig out their website later today). The ladies that stopped by just explained the types services they could provide - all donated by local companies or individuals. They had a whole list and told us just to drop them an email after we'd thought about how they may be able to help us.

We thought about things on the list and came up with two things - some help with painting on the house and a "comfy bed" for Scott. So Stephanie sent an email out sometime Monday. Around about dinner time she had a reply explaining what to do about the bed issue. Someone (still not sure who) at Famous Tate had instructed them to have us come in and they'd donate a new mattress of a certain value to Scott. So off we went last night to the Brandon Famous Tate. The whole process was simple with the help of Jack Ryan at the store. He looked at the paperwork left at the store concerning Scott and basically showed Scott which ones he could have and to test them out, then tell him which one he wanted. Scott picked and Jack said "we'll do our best to have it there tomorrow".

And we had to do no more. No papers or anything. We also discovered one of the employees at the store, a young man in his mid-20's, is currently in treated for lymphoma. We chatted with him for a few minutes, as that seems to happen when you cross paths with someone else dealing with cancer.

I'm just floored and humbled by such things happening. The world is a very jaded, self-centered place these days. But among all of those types, some truly good people are out there. Willing to do or provide what is within their means to help complete strangers. We knew no one at Famous Tate. I'd never been in a Famous Tate store, as they are local to this area and I've had no appliance needs since we moved here. But I can guarantee you they'll have our business for the things they sale from now on.

We'll update you on how Scott gets on with a new "comfy bed".

A hug for Derry

.. from Dave (our cat who isn't ours but who seems confused and thinks she is!) shortly after the Ghost Riders suffered another brutal hockey loss.

Clinic

Sorry I didnt update yesterday with the usual Thursday morning clinic update but I couldnt be bothered. Anyway, all was well (kind-of), his anc was 1355 so we were able to proceed with his weekly methotrexate. Wbc - 2.2, hgb - 11 and platelets 201. His biliruben was high again though and if it stays high next week then Scott will once again only get a half dose of Vincristine. Not good! We need the full monty, got to keep pounding those damn leukemia cells. Well not much I can do but worry about it till then, so worry I shall!

Here is Scott and his friend, Neffy, playing on the N64 at clinic. Neffy has been through all this once already but sadly relapsed a few months ago.

As you can see Scott's hair is coming back in again now. This is quite usual in children with leukemia, whilst he is still being given chemotherapy on an almost daily basis, the very high doses are now behind him and for most kids the hair will start to come back. However, at any time during his 15/16 months of treatment still ahead it could all just drop out again. Whilst it is wonderful to see hair again and a little pinkness in his cheeks I am more than a little sad that the new growth is dark and not the mousy blonde he used to be (but fear not, I am a dab-hand with a bottle of hydrogen-peroxide!). A change in colour is normal and as it grows we may even see curls!!!!Ug.

Till next time.