Monday, March 31, 2008
He has been working hard with the Florida Virtual School and recently started a new course studying World Cultures. Today he sat for three hours totally engrossed in an interactive exercise, building a ziggurat. He loves to learn about the ancients and if my brainwashing goes according to plan in ten years he’ll be off to the Great Rift Valley, a trowel in one hand and a toothbrush in the other.
David is starting to feel better and is now on some pretty heavy duty antibiotics which have given him a bit of a ‘Chernobyl’ look but did thankfully, stop the pain and fever.
Well that’s it for now, we have a busy week ahead and all being well lots of good stuff to look forward to. I’ll leave you with a beautiful song by Oasis. Scott loves Oasis. Scott has great taste!
Saturday, March 29, 2008
They look bigger in these pictures than they actually are. They are tiny, maybe three or four weeks old. I believe Dad is around somewhere too as a couple of nights ago I saw the cats all lined up staring at something in the garden. Turns out they were watching Momma Possum and big Daddy Possum getting all romantic right in the middle of our garden!!!
I hate to end this post on a sad note but I recieved a call this morning from a very dear friend of mine. Her child has relapsed. I will write more in the coming days and ask that you all do whatever you can to give this family your moral support. This family have been so kind to us and Scott is very fond of their precious little girl, Sierra. For everyone with a child who has leukemia relapse is the thing we dread more than anything else. Relapse indicates that the leukemia is stronger and more resistant than the therapy previously tried. Therefore the doctors must treat the relapse much more aggressively. Sierra had a relapse confirmed 2 days after her protocol ended, a time of great excitement yet a dangerous time, a window of opportunity for any remaining cells. I dont want to say too much about this child, sometimes writing here of other children makes me feel like a little old lady passing on the latest gossip. I just hope that you all know that this is not my intent. I write of these children only because I care and because of the great bonds forged during our crossed paths on this terrible journey.
Thursday, March 27, 2008
On to David. He woke with a temperature of 100.4 but said he was well enough to drop us at clinic and go to work for a while. He seemed okay this afternoon, not his usual chirpy self by any means but certainly not in the zombie state he was in last night. He yelled at the TV a bit , ate pizza, played his favourite playstation game a while and all seemed hunky dory. Then about an hour ago he started shaking and shivering and saying he hurts all over. He's now in bed covered in a hundred blankets making a strange sort of wheezing sound. His temperature is 99.4 but he's definately coming down with a cold or flu or something. Grandmomma, Papa and Carolyn ... I promise you I am taking good care of him. Were he to get up and walk right now he would sound like a box of tic tacs on legs with a mild case of vitamin C poisoning.
Thanks for checking in us. Goodnight.
Wednesday, March 26, 2008
Needless to say we have gone into overdrive with the hand sanitizer and clorox. Scott's body will hit nadir in a day or two and his immune system will be screwed.
I gave David some Emergen-C and then went to make him my super-duper elixir - mango juice, soy protein, organic yoghurt, blackberries, blueberries and some green 'stuff'. I think he must have heard the blender because when I went back he was pretending to be asleep. :(
David tries to carry the world on his shoulders, sooner or later, it just gets too heavy. He needs a rest that's for sure.
Tuesday, March 25, 2008
First blow - our Government.
While filing out the old taxes this past weekend (online, it's easy and my bank makes it cheap), a window pops up and says "About that tax rebate: You will not qualify because you used an invalid SSN for Stephanie". Keep in mind Stephanie and the boys use "ITIN's" from the IRS. The ONLY use an ITIN serves is for TAX purposes. However, in Washington's brilliance, the "tax refund" bill (passed just in early February) is written in a way that say folks using ITIN's are NOT allowed the rebate. Even if filing jointly with a natural-born citizen. It isn't that we just don't receive the rebate which would be calculated including them, the rebate for a single US citizen (me) is ineligible for me to receive.
All because they use numbers only given out by the IRS only. Which are used only for tax purposes. Not to mention, the boys can't procure SSN's until they are working age (Immigration Law). We are going to spend a morning at the local SSN office to file for a number for Stephanie (which will change nothing as 1. she will no be working while Scott is in treatment and 2. it will only be used to put on a tax filing for the benefit of getting said rebate and 3. because due to her being a LEGAL immigrant, she can't receive any public assistance for 10 years). Will see how that goes.
Second blow - Insurance plan.
We've had a great insurance plan from work. So good in this type situation, I've been a huge proponent of encouraging people to do the math and switch if it makes sense. The plan had a sizable deductible ($4,000), but after that was met with hospital, doctor and pharmacy bills, everything was covered 100%. The maximum we'd spend any plan year was the 4k. Pretty clear cut and easy to plan for.
So I receive today our Open Enrollment letter. Same provider. Same plans options. Just one wee little addition this year - "We will be introducing prescriptions co-payments AFTER the deductible is met on the high deductible plan". Great. This makes me see red. The one thing I could count on as not being a worry through the nightmare of having a child with cancer was our insurance, as I knew exactly what we would spend, planned for it, and forgot about it.
Now, with this in place, there is no absolute out of pocket maximum. We have no idea what drugs Scott will need (we know the ones in the protocol). What if we had to pay for all those nasty Luvenox shots last September? So there is no way to plan and forget what expenses will be faced, as there is no maximum. This additional cost could easily be as much as the deductible again. We're always at the pharmacy for something or another.
So we all feel like we want to beat the hell out of a wall or something.
At the same time, we all feel like we've had the hell beat out of us.
In no way will we let Scott go without anything he needs in this fight, that is not the issue. It is just a frustration very similar to what Stephanie wrote about earlier - this mess is ugly regardless of what facet you view. It just doesn't get the coverage or interest that Lance Armstrong on a bike of Susan G. Komen's pink ribbons do. It doesn't because millions of women face breasts cancer. Millions of men face prostate and other cancers. But only a few in a million are kids that are diagnosed with cancer.
And most of the cries to help the few go unheard.
In summary, Dubya (the rebate was his idea, and he hates all immigrants it seems, and especially makes the LEGAL ones suffer while doing nothing to stop the illegals), Congress (for writing such drivel and not funding ped onc research) and UnitedHealthcare (for killing the spirit of high deductible plans - one of the best ideas in healthcare in decades) can just all go straight to bloody hell.
Have a nice day.
Monday, March 24, 2008
Any help in any way will be greatly appreciated by Pat and everyone at Driving for Donors. But even more importantly, each person that finds a marrow match from the people signed up by Pat's effort will have another chance at living.
And I can guarantee you they will be even more appreciative.
Pat's mom sums up their need by in the message she sent us:
Can you help us with this year’s drive? We are having a hard time fundraising this year and I am beginning to panic a bit. We need to raise $35,000 more for the US portion of the drive that the RV will leave for in early May, not to mention another $100,000 for the international portion of the drive to the countries that are desperate for Pat’s help!
So please, spread the word far and wide. Thanks!
Sunday, March 23, 2008
Saturday, March 22, 2008
Did anyone see Willie at the dance last night
Let’s pick up Boa without a fuss
Chuck him in with caimans at the back of the bus
‘Cause we’re running late, it’s way past ten
We’re driving through the straths and glens
Come on, Johnny Bulla, make it fast
For the 12 noon throw-up
And the clash of the ash
Well we’d better make change now it seems
Geek to the centre, Weed to the wing
The Rocket’s old and slow and due to retire
Stick him right on the sawdust ready to fire
But if we do all that and there’s no-one spare
Tell me who’s gonna mark the Kinlochsheil Bear
He’s hard as nails, quick as a flash
He comes down from the caves
For the clash of the ash
This story started long ago
With heroes forged and legends told
And for every fighting highland man
Stand by your brother, die for the clan
But when the whistle blows and the battle’s done
These shinty boys shine like the sun
We don’t play for fame, we don’t play for cash
We just play for the glory
And the clash of the ash
Derry is playing (and Annie watching) soon. Scott feels like he's been dragged through a hedge backwards so it doesnt look like we'll be there to cheer him on. Good Luck Dezzy!!
Friday, March 21, 2008
Tonight came news we didn't want to hear. Little Matthew Gliddon is being taken home by his parents early next week. They put a message up on his site tonight saying that was the case. His parents have had the conversation none of us cancer parents want to ever have - the conversation with folks that deal in Hospice care.
We ache inside for his parents, and especially for Matthew. He's just an innocent kid. His mom made a post that for the last 3 Christmas mornings, he had been in the hospital. The last time he wasn't, he was 2. The little guy hasn't ever known what it's like to wake up at home on Christmas. So many things he's not known or seen. And far too much trauma, pain and sadness.
Matthew was one of the first kids we met when Scott was diagnosed. If some miracle doesn't come to Matthew, I fear how it will affect Scott. Scott is a very emotional caring person. While he's been around many kids, he's not yet had one he knows face to face lose this battle.
I fear his reaction. But I also fear not knowing how to answer what questions may come. I hate having questions asked I can't give solid answers for. We're supposed to be able to answer anything for kids.
Please keep Matt in your thoughts. He's just a little kid, and this ugly beast is getting the best of him.
I hate this beast. I hate the drugs that have to be used to fight it. I hate seeing what it does to Scott, and all of these kids. It's painful and numbing all at the same time. No kid should face this.
Thursday, March 20, 2008
Its going to be a long night. :(
Wednesday, March 19, 2008
Neat! The perfect validation to get another kitty.
Snipped from CNN ..
Even in death Arthur C. Clarke would not compromise his vision.
The famed science fiction writer, who once denigrated religion as "a necessary evil in the childhood of our particular species," left written instructions that his funeral be completely secular, according to his aides.
"Absolutely no religious rites of any kind, relating to any religious faith, should be associated with my funeral," he wrote.
Just for the record, should I drop down dead tomorrow, please do the same for me. And if someone could scatter me atop Craigendarroch that would do nicely.
Also from CNN
BISMARCK, North Dakota (AP) -- Using tiny brushes and chisels, workers picking at a big greenish-black rock in the basement of North Dakota's state museum are meticulously uncovering something amazing: a nearly complete dinosaur, skin and all.
Unlike almost every other dinosaur fossil ever found, the Edmontosaurus named Dakota, a duckbilled dinosaur unearthed in southwestern North Dakota in 2004, is covered by fossilized skin that is hard as iron. It's among just a few mummified dinosaurs in the world, say the researchers who are slowly freeing it from a 65-million-year-old rock tomb.
This is the dream of paleoanthropologists. Can you imagine seeing not just the fossilized bones of our ancestors but the skin and even facial features too? It takes extraordinary conditions but it can happen!
Tuesday, March 18, 2008
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.
Monday, March 17, 2008
Not even close.
Boggy Creek was an amazing surprise. Calling the place a "camp" doesn't truly describe what it has to offer. Yes the activities are very similar to those of attended by countless kids during "summer camps", that is - kids without such diseases. Boggy Creek is tailor-made for kids that are battling a long list of nasty, life-threatening diseases. We "camped" in a quite comfy bunkhouse for 8, which is air-conditioned and heated. Plenty of room and footlockers at each bed! This made me briefly remind Derry of a scene or two from "Full Metal Jacket"......but I digress.
This weekend was one of the Camp's "Spring Family Weekends". Basically seems to be a primer for families to get to know the place, or comeback for a return visit (we decided to try it out, as we're considering sending Scott for the week-long session this summer - all alone). We were all a bit shocked at the beginning, but that wore off rather quickly. We were greeted by Nick, our 'Camp Pal' for the weekend as soon as we drove up to our cabin. Nick is a student at FSU and a volunteer for the weekend. He was wonderful with all of us, and especially the boys. We thought Scott may wear him down on Saturday, as he was dragging him from activity to activity non-stop. Nick would simply ask "what do you want to do now?", Scott would answer, and they were on their way. Stephanie and I were apprehensive about arriving and letting Scott loose with someone we had never met, especially considering he hasn't really been out of our sight since diagnosis. Nick made quick work of making us comfortable in that regard.
It also was about Derry as well. Derry being 13 and far too cool to hardly even talk to us, much less strangers, had us worried. But it didnt' take long to figure out Nick also plays World of Warcraft and "has several Level 70's", which instantly made him someone to worship in Derry's eyes. Derry longs for a "Level 70", but has only made it to Level 30. LOL.
Scott got to shoot archery, mini-golf, boat, swim, sing, dance, play in the arcade and woodwork. We sat around Saturday wondering where in the world all his energy was coming from. He hasn't been that happy and active since he was diagnosed. He was on the go Saturday from 7 a.m. until 11 p.m., with a brief break in the afternoon for about 90 minutes. I was sure this would result in him sleeping until noon Sunday, but I tapped him on the shoulder at 7:10 Sunday to ask if he wanted to lie in or go with Nick at 7:30. He just said "I'm gonna go with Nick", hopped up and got ready and was waiting on our porch when Nick came walking down the road.
It was all very nice to see and experience. The camp "pals" the place recruited were wonderful. Our endless thanks go to Nick, whom was a gem. There were also Norah (from a university in Toronto - which the name fails me) and Cari (from Yale) that spent time and interacted with the boys anytime they saw them. How they instantly remembered and accepted so many struggling kids with such trials is beyond me. I think most have a knack to be very special folks in life. More so than they are now.
But the hub of the wheel is a woman whom we still only know as "Kimmy". She never gave anyone her "title" or what her position was at camp. She obviously is the camp director or whatever one may be at such a place, but she only introduced herself as "Kimmy". She is an amazing person that seems to have endless energy for these kids. She even thought Stephanie's explanation of why we came was worthy of a "TV" (a wood one that hangs around the neck). The TV's traveled around to different folks over the weekend, as the original folks that got them were to give them to the next person they saw do something special. A little girl in the opposite side of our bunkhouse continually was opening the door for us each time we came up, I think in the hopes that Stephanie still had her TV - alas she had already given it up to another kid. I was pleased when the little girl showed up in the dining hall late Saturday with her own TV around her neck.
I know I'm rambling, but it was a very nice weekend. I think back and realize now that Scott hadn't spent a single night away from his bed since diagnosis that wasn't in a hospital bed. Camp Boggy Creek gave him a bed that was neither home, nor the hospital. And that is something which to him is priceless and long overdue.
Now if we can figure out the food hurdle with Scott (very picky eater, and may starve if there for a week) we can let him have a whole week that is "his", and only his.
Here's the the Boggy Creek Gang. Please go and check out their website. Founded by Paul Newman and Stormin' Normin', it is a great place. Probably best summed up by a quote from Paul Newman himself on the website:
"A place where kids can go, have fun and raise a little hell".
Sunday, March 16, 2008
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!
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.
Thursday, March 13, 2008
We visited with Kaylie and her family and Scott gave her a beautiful princess bear he had made for her at Build a Bear on Tuesday. Hopefully when she is conscious and feeling better she will enjoy her ‘Princess Kaylie’. She has made a slight improvement on last week which is wonderful, her recovery is going to take quite some time but that’s okay. Thankfully Kaylie is making baby steps in the right direction.
We also met yet another kid recently diagnosed with t-cell. I must say it is very worrying how many children seem to have t-cell considering how unusual it is. The doctors have said that there is most certainly a cluster of it, but also that clusters are not necessarily anything to be concerned over. I do understand that but at the same time cant help but wonder that there is more to this than meets the eye.
Scott had an appointment with the dentist this afternoon. Chemo can cause havoc with the teeth so we aim for a cleaning and consultation about every 4 months. He had to be pre-medicated with a very large dose of antibiotics before his visit which he doesn’t like as it makes him feel yucky, and like many kids, he hates going to the dentist. So anyway, all went well, he had a wonderful hygienist who was so kind and understanding and cleaned up all the gunk he missed, then the dentist came for a look and we were thrilled when he said that Scott didn’t have any cavities or concerns. Then just as we were leaving, and quite unexpectedly, he gave us his hockey tickets for next week!! Good seats too. Silly old dentist, he made my eyes leak.
Well that’s it for now; the house looks like a bomb has gone off and its making me itch.
Thanks for checking in. Oh and a big thank you to our huge hearted Angel Laura. I loved the birthday present and yes I suppose I am a crazy old cat lady. Thank you very much.
I forgot to tell you about last night ... Scott managed to skate for a whole hour, he must have covered about 3 miles. That is without doubt the most he has been able to achieve since diagnosis!! And speaking of which, today marks 54 weeks of treatment, it has been 60 weeks since diagnosis but we missed a few weeks, these are added on at the end. Anyway, 54 weeks marks the half way point if all goes according to protocol, which hopefully it will. Whilst it is kind of depressing to think that after so long we are still only half way there, it is also kind of exciting too. Our glass of chemo is half empty.
Wednesday, March 12, 2008
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.
Sunday, March 9, 2008
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.
Friday, March 7, 2008
I am so angry nowadays yet I have nothing or nobody to be angry at. Leukemia is as natural as any other ailment and as much as I am in awe at the evolution and survival of our species I absolutely hate being in a situation of having a child who is not among the ‘fittest’ and without medicine would stand no chance whatsoever at survival. What can I be angry at? A mutated gene?
Having a child with cancer is devastating. We have no idea what tomorrow will bring, or next week or next year. Leukemia can be cured but it is 10 years until a doctor would dare use that word. 10 years of watching, worrying and waiting. And even then the majority of these children will be left with serious long term damage and greater odds of developing further cancers. I remember during those early days, we were told over and over that we would find our "new normal" ... well screw that ... I will NEVER accept this, it will never be normal, never! And for those whom have said that leukemia is 'the better cancer' .... bite me!!
Thursday, March 6, 2008
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!
Well must go now and try to cheer Scott up a little, and please, keep Kaylie in your thoughts.
Tuesday, March 4, 2008
Saturday, March 1, 2008
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.