Lost for words

and wondering how long it will be before Sting starts bothering them.

the spiderman is always hungry...

Another Thursday another shot of the good stuff for Scotty boy.

Counts were elevated due to the steroids although his monocytes were low which spooked me somewhat but our lovely nurse, Vicky, calmed me down and said all looked good.

I think as the weeks tick by I get more and more nervous. Relapse is often seen early in t-cell (median relapse time is 62 weeks as oppose to about 130 weeks with pre b-cell) but that still leaves the other 50% occurring after 62 weeks. I think I have said this before but the word ‘cured’ isn’t uttered until 10 years remission. 10 years!!!

We got home at a decent time this morning and I spent hours going through all his bloodwork since diagnosis, driving myself crazy over counts from months ago. It was shocking looking back and seeing how many 'abnormal' cells Scott has had over the last 16 months, what they could have implied and how ignorant I was. By the time David got home from work I was hyperventilating and ready for Bedlam.

That’s all for now, apart from …
1. I stopped smoking today ….. ahahahhahahaha … I want to kill someone already and its only been 4 hours!!
2. We are going to cancer camp in Maine!!
3. 13 days until The Cure!!

Insomnia again. At least on a night like this I can chuck down an Ambien and droll all over the pillow for several hours. Scott is on his emotional roller coaster now. Upbeat and chatty one minute. Glaring and growling 15 minutes later. Steroids suck.

It was hockey day for Derry today. His team has come a long way in the last month compared to how they were playing earlier in the spring season. They only tied, but now have been a month without losing a game. A small miracle indeed. Derry gets better each week, and when his muscle structure finally catches up to his size, he should be in rather good shape.

Stephanie has went to sleep. But she mentioned something yesterday that has me thinking tonight. She was talking about Memorial Day, and what folks "usually" do. She said - "I didn't know we were supposed to go away on Memorial Day". At the time it struck me as just one of those cultural anomalies we have at times because of where we are both from. But its been grinding in my head this evening. Yes, lots of folks "go away" on this weekend. But we don't. Not just this weekend, no weekend. We are in the unenviable position of simply not being able to plan anything that is more than a trip out for a couple of hours, planned at the last moment. Far too many things have gotten cancelled after we've planned them. Nothing of great magnitude mind you, but it is just the way we must be at this time.

We live a far from normal life these days. One of the hardest things ever asked to any of us is "what are y'all doing" or "what did y'all do this weekend". It's just a simple, almost rhetorical question that most folks ask just about anyone, but it just unnerves me these days for some reason. I feel we're short-changing the boys by not doing things on the weekend. Not going to a movie or game or beach or something away from the house. I know that is probably a silly thought, but it hurts to think how this bastard of a disease controls so many aspects of every part of our family. Stephanie can't watch Derry play hockey most weekends because of the side effects Scott is experiencing or if his counts are bottomed out. That eliminates 2 out of every 3 weekends right there due to his treatment cycle.

Don't get me wrong, it's not as if we were the kingpins of the social circuit prior to all of this. The frustration isn't the lack of "doing", it is really the "control" that this disease wields.

I know I seem to ramble these days when I write on here, but I do it off the top of my head and if it seems the cheese has slid completely off my cracker.....well.......maybe it has. Maybe it hasn't. But it is simply maddening to watch this happen to your kid. It's maddening to watch kids not make it. It's maddening to see what it does to one's wife, and all the other parents and all the families.

It is truly a lion that walks in your home and does as it damn well pleases, with absolutely no means of control to make it leave.

Off to Ambien Land....

Thursday rolled around once more and off to clinic we went. Counts came back at 1990; platelets 248 and biliruben was at 1.4 so that meant onwards with the full dose of poison and another week of loveliness. Scott had a feel up – I mean physical – from Dr Tebbi and apart from being told he was getting a “little chubby” all looked good. Scott handled being told he was a fat kid pretty well considering it is a pretty touchy subject. I on the other hand, didn’t need to hear it. Anyway, the least said about how I feel on this the better. Let’s move on….

Chemo was again ‘upped’ but only slightly. Like I have said before it will keep on increasing until the anc stays at a reasonably low (just above neutropenic) level. There is no point in giving chemo to a leukemia patient if the blood is allowed to flourish! Steroids start again today, 135mg prednisone daily for 5 days, which is a massive amount but also aids in fighting the cancer. The wonderful side effect of this is hunger, big hunger, which brings us all back in a nice circle to chubby little Scott and to how pissed off I am.

We discussed his depression and I agreed to carry on with the Paxil even though it doesn’t appear to be helping. But I’ll hang with it a little longer. I also asked to see if there was anything else we could try to help Scott with his pain, depression, anxiety and insomnia but Dr Tebbi wasn’t keen on putting him on any extra medication and to be quite honest I fully agree. As horrible as all this is I would rather avoid any more medication unless things reach boiling point. I guess I was just hoping for a magic pill to take all this away, just one little non-addictive, safe and organic, magic little pain relieving, sleep inducing, slimming, happy pill. But there isn’t one. Well nothing that’s legal anyway.

Dr Tebbi also diagnosed him with ‘foot drop’. I’m not exactly sure what this is and I will do my best not to research it online as I know whatever I read will send me into a frenzy, but as I understand it, it is caused by the vincristine and should go away once he is off treatment. I hadn’t noticed it before but Dr Tebbi had me lay my leg down next to Scott’s and you could see a very noticeable difference in the way we held our feet and ankles.

Anyway, apart from having cancer, being depressed, a little psychotic, oh and now anxious about the Mayan (12/21/12) prophecies (we watched that ridiculous documentary on the crystal skulls, biggest load of crypto anthropological/archaeological/mythological/New Age dross I have seen in a long time), Scott is very doing well.

He has spent a great deal of time lately in the pool and even Derry braved the icy water last night. I appealed to his vanity by telling him that the chlorine would dry up his zits and the sun would highlight his hair beautifully and before you could say ‘Ayai Napa’ he was out there soaking up the sun, laughing and playing with his brother. For a little while he even forgot about his alternate world, the World of Warcraft.

I think that with Scott being so sick for such a long time a gulf had developed between them. Derry retreated away from all that was bad in Scott’s world, I know he was and is deeply hurt by all that his brother is going through but finds it hard to deal with it. Scott backed away from Derry because he was angry, “why me, why not Derry, why is it always me that gets the shitty end of the stick?” Scott was the one with bad eyesight, Scott was the one who was attacked by the dog and of course poor old Scott then got cancer and had a stroke. I guess it’s perfectly understandable that he feels just a wee bit peeved.

Again this evening they played together in the pool, just like the good old days when they were best mates, mortal enemies and blood brothers, without a care in the world.

Later it all went pear shaped. Scott went downhill quickly, the pains have started and he is terribly, terribly upset. I ended up giving him Ativan but it didn’t even take the edge off. I lay with him a while and we talked about everything under the sun. I promised him a day in bed tomorrow, a day of movies and Yorkshire puddings and Angel Delight. All the while he just cried. I would too. Leukemia stinks.

Well David has just knocked back some sleeping pills and headed off to bed… to Scott’s bed … Scott is in our bed. I think this is kind of normal when a child has cancer, lots of bed hopping and pills. My goodness, you should see our kitchen lately, bottles of medicines, pills, chemo, alternative potions, amino acids, and eyes of newts and toes of frogs. And today my new wonder drug arrived – Spirulina – also known as pond scum. I have been trying so hard lately to eat well (hoping against hope my healthy new living will cancel out my little vice/s); I now live on flax cereal, soy protein, walnuts, almonds, oodles of fruit, yoghurt, milk and now my lovely tub of dried algae. I don’t know if any of you have tried this stuff before but it is gross. I made a smoothie of apples, kiwi, spinach, raspberries, blueberries and a scoop of spirulina. It looked like sewer run-off. Absolutely disgusting. However I did manage to drink it (with a straw, it helps bypass the taste buds) then had a Dove bar to take the taste away. I feel so pleased with myself. Then, after Scott calmed down, I went for a walk. It’s the only way I can breathe right. When you have a sick child it’s almost impossible to breathe, well for me anyway. So I had a little walk and I saw a bobcat!!!!! It was just sitting in the middle of the path and scared the living daylights out of me. It was awesome.

Before I go I would like to say thank you to Grandmomma and Papa for thinking of me and for their kindness on Mothers Day. Also thanks to Carolyn for the beautiful book and CD. To Laura and David, Scott’s chemo angels, a HUGE thank you for being such remarkable people and for helping Scott though his treatment. Your commitment, love and generosity is very much appreciated. Thank you.

Well that’s it, I’m off to bed. Thanks for checking in. Nanight!

"A bear, however hard he tries, grows tubby without exercise." - Winnie the Pooh

The sun is trying to kill me

Scott had clinic again today - surprise surprise - and thankfully (phew) his counts looked okay and he got a lovely syringe full of methotrexate. His anc was lower than it has been in quite a while but I hope this is simply due to chemo being increased. I think that the nurses are getting pissed off with me though as I have so many questions and concerns... "why is this elevated", "why are the lymphs low", "why...", "why ... ", why ..."???? I feel like I am going crazy, my head hurts, my chest hurts, is cancer eating away at me too? Most of all every time I look at Scott it hurts, I get angry, livid, terrified. This is all so unfair. Life can be such a bad word that I couldnt post here. But it is.
I am fed up with it all. I still havent told Scott about the two sweethearts we lost within days of each other. Just cant do it. He loved them both so much. It will break his heart. Today and last week I have avoided other people at clinic, worried that someone will say something and I will end up in tears and Scott will find out. David says it looks like I am being rude. Well so be it.
I dont feel great either, kind of like Ive been slapped in the face with a brick. Not only that but I have been sitting in the sunshine a bit over the last week and now I look like I have the plague. It itches so bad and Im all bumpy. We also found out this morning that 27 cars in our street alone got smashed into last night. Our cars were untouched, I guess even a burglar has standards. Oh and something suspicious happened next door also. I think its time to polish up my karate skills or buy a bloody great gun. I read the other day that taser parties are becoming all the rage, kind of like tupperware but different, if I had any friends I might have a party like that too.
Well thats it, Im fed up with this crap. There is so much I would like to say on here but I wont. Its kind of like being in a goldfish bowl and its unnerving. I can only go so far. If I really opened up my big gob and let it all spew out I am sure they'd cart me off in a straight jacket.
Or maybe not .... I am sane. Yet I am a minority.

Stephanie and I sit shellshocked tonight. This morning little Kaylie passed away. She was only two. This is extremely disturbing news. Little Kaylie was in the hospital when Scott was diagnosed, and we met her, her mom Tisha and Kaylie's grandmom while they made literally thousands of laps around the ward at St. Joe's.

There are just no words right now. Three kids we know have been lost in less than 4 weeks. It is like some sort of unimaginable torture.

We will miss you greatly little Kaylie.

Mum's Day

Boy does Mother's Day (it's today in the US, it was last month in the UK) take on new meaning these days. The "duties of a mother" change dramatically when one has a child battling cancer. The whole gig changes. As I watch Stephanie and the things she does, I often wonder how in the world she does the things she does continually with Scott. It takes a lot of patience and determination. She has to be very stern and methodical with all the medicines and cleanliness, all while continually realizing this is likely the most serious thing one can have to deal with in a lifetime.

I don't believe there are any "parenting" manuals that describe exactly how one deals with facing a child diagnosed with cancer. Most folks are probably too afraid to write one, and the parents that have been down this road simply don't have the time during the battle, and likely want to leave the demons behind after the war is waged.

But today is for Mom's. They deserve tons of credit and are probably grossly underappreciated 90% of the time. They have a tough job indeed. I think of Stephanie, my mom and Christine obviously. But I also can't help but think of some other mom's that are hurting. Mom's like Mary Lynn who just lost Sierra. Like Sherry Tucker who lost Zach, but now marches on with a vengence and legacy to little Zach. Like Tisha, little Kaylie's mom that has sat in ICU over 3 months now, along with HER mom as well.

All superstar mom's indeed.

Well we made a few more steps along the scary path. Its been a very rough week but thankfully the pain has subsided and Scott is feeling so much better. His anc is over 5000 and platelets at about 240.

Just thoughts

Far too many times I stay awake way too late on "pre-clinic" night. It just seems odd having a day of the week with such a name. One of those words/phrases that we never knew 16 months ago. But realizing the only thing "certain" in this epic is uncertainty - the mind wanders. Each week is a new set of bloodwork. Will it be good? Or will something be out of whack?



I know tons of folks say "you just have to be positive". We do stay as positive as possible, but the fear and nerves don't listen to such things when logic dictates positive things just are not certain. We can see it in Scott's eyes each Thursday. He has ativan on Wednesday nights, or he just can not go to sleep. He becomes guarded after dinner on Wednesday's.



Thursday. Just one of the seven days of the week. I don't think we'll ever be capable of mentally considering Thursday just one of the weekdays again. It is like this monolith on the calendar each week. If all is well, it can be a week until the next Thursday that has us feel.....well.......not exactly great, but the intake of seditives lessens.



At Scott's diagnosis, everything was beyond overwhelming. Beyond reasoning logic into how we would deal with such devastating news. Now, over 15 months and countless sleepless nights and complications, one still doesn't really know. Yes, we know the routine of drugs - as long as it is a routine cycle - but the best word I can use for it is the word "grind". Folks ask me all the time, "how are things?". I find I answer by saying "it's a grind. you just have to keep plowing". It's not a negative term, it just is that the worries and processes don't change. They grind along. Weeks with "perfect" bloodwork seem to fly. Weeks with some reading a bit off drag like crazy.



Then things happen with kids you know. Not from their website, but kids you see in the hospital. In the clinic. Kids that develop sets of complications which seem to spiral madly. And then you turn around and realize the kids are gone. They didn't make it. Then nothing seems certain. You question everything about where treatment is being done. It's not logical to question, it is just what your mind does.



Those thoughts are with me because virtually any cancer site you go to contains information about "survival rates". Once you have a child involved in this nightmare, those numbers mean squat. I'd wager a lot of money if you surveyed all the parents at clinic, they have the "50 percent" answer. Each child is going to get through this, or they are not. That sounds cold, but most "insiders" know it isn't. And some of the sites and even doctors state "oh, that survival rate is 90%".



Great.



Line up 100 kids in the hall, and look at 10 of them. 10 of them will be gone.



90% doesn't seem so dandy then.



Matthew and Sierra are gone. Their parents care nothing about that stupid survival rate. It's a meaningless number except for researchers. I don't begrudge them for working to better the number, I just wish the number wasn't such a huge "comfort" tool as it is made out to be by so many people.



Sorry to be such a downer, but that is the reality of this disease. It never lets you rest. You can't, or the lion in the house may awaken. You must continue to grind. Scott grinds. Stephanie grinds. I grind. Derry.....well......he grinds....he's just too cool to openly admit it.



I'm off to attempt sleep now. Tomorrow is Thursday. The nerves await. Sadly, Sierra has no "Thursday" tomorrow.



And that simply breaks my heart.

Our friend, Sandie, posted this elsewhere, at a site where many are following Scotty's progress. She posted it in memory of Mathew and Sierra. I know that many of the 'Cats who have been reading Skittles blog are feeling the pain too at losing two very special little children. I just thought I would put Sandie's beautiful dedication here also....

for all our babies in memory of Sierra and Matthew



I Hope You Dance
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',
Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

Dance....I hope you dance.
I hope you dance....I hope you dance.
I hope you dance....I hope you dance..
(Time is a wheel in constant motion always rolling us along
Tell me who wants to look back on their years and wonder where those years have gone)

Sierra

Yesterday our very good little friend Sierra died. I have so much I would like to say but am scared I dont say the right things. So forgive me if I get this wrong.

I havent told Scott yet. He is so unstable right now and I am terrified this is going to send him over the edge. He cared deeply about Sierra. I think she kinda liked him too, she called him 'Cott and always, even when she felt bad, gave him a smile. I have to tell him soon, I believe he may want to pay his respects, I cant not give him that opportunity to say 'goodbye'.

Sierra was beautiful and she always will be. She had the most incredible dark, and very wise, eyes. She had such a cheeky grin and, my goodness, she was the bendiest person I ever knew!! Sierra was adorable, with a fighting spirit, all wrapped up in a bundle of cuteness.

Today I have been 'acting', trying to make on its just a regular day. But it isnt. We lost Sierra. David went outside for a while on his own and trashed the weedeater, completely mangled it. We are angry, scared and very,very sad.

We are so sorry she is gone. For us, yes. But obviously we hurt for her Mom, her Dad and her brother and sister. I just hope they can find the strength to keep on going and someday to smile again.

This has been a horrible post to type.

Sierra, we'll miss you sunshine!

Added by David: Sierra was an aboslute gem. Just a little girl which always had the slyest smile I think I've ever seen. Sierra was also one of the first kids/families we met after Scott's diagnosis. She shared our clinic day, and one thing was certain - we'd see Sierra and her mom Mary Lynn at the clinic. I simply don't know what to think at times like these. I snapped while doing yard work like I've not snapped in a very, very long number of years. The anger I feel about this is great, and honestly, scares me. Sierra was just a child. I'd trade places with any of these kids in the blink of an eye. Sadly I can't do that.

Scott took well to her during this mess. I've also no idea how he'll handle this news. I have no idea if it is the right thing to do to have an 11-year-old boy deal with a funeral for a kid.

But all things in the nightmare seem to have no "right" answers. Just endless uncertainty, heartache and sadness.

Yes, she will be missed greatly.

Today’s bloodwork looked fine so Scott started another cycle of bliss and merriment. Anc was 1800, platelets looking good at 270, biliruben high at 2. Had it been 2.1 he would have received only a half dose of the lovely vincristine. All chemo’s were increased today … again … he is now taking more than he has ever had to take, steroids also increased. Part of this is due to weight gain but mostly because his counts are remaining high, and hell no; we can’t have that, got to keep on hammering at his poor body and kill those suckers and everything else in its path!!

We are now home and Scott has dug himself into the floor, made a sort of nest next to his Playstation and ‘itchy and scratchy’ (David’s’ cat who we discovered HAS FLEAS!). He is bleating for Papa John’s pizza (which now makes the rest of us gag), and insists he is going to stay in his hole until the pain goes away … one week from now.