Thursday came around again and Scott and I tried to hatch a plan. How does a cancer patient ‘throw a sickie’ in order to avoid a doctor visit? What astoundingly brilliant and cunning scam could we conjure that would allow us a ‘Get out of clinic visit without incurring the wrath of doctors and the social services’ card? Our combined genius came up with nothing. Nowt.
For the last 108 weeks we have spent every Thursday at the cancer clinic, mostly outpatient but sometimes stressed to high-hell for one reason or another, as inpatients. It just gets a little trying, and tiring. Every Thursday waking up with a pounding headache and a desperate need for vast amounts of Pepto-Bismol and Xanax, wondering if today will be a ‘move forward one space’ day or the day when the shit hits the fan.
Anyway, we did go to clinic of course, and we did move forward. Yay!! Scott’s counts weren’t all that great but like I said last time it seems his bone marrow is exhausted and the boost in counts following prednisone is nowhere near as dramatic as it used to be. His platelets rose and his hemoglobin fell, there were 4% immature cells but they were recognizable and not the dreaded ‘unclassifieds’. So he received his 101st dose of methotrexate and we were on our way.
Whilst I was there I mentioned the pain issues – well I didn’t just mention, I said I would consent to no more chemotherapy unless pain control was addressed – and was thrilled to get approval for Demerol. Every cycle the pain has increased and it’s got to the point now where Scott cannot be expected to simply ‘suck it up’. The doctors really don’t want to over-medicate the children and are very cautious in giving out strong opiates and the like, but Tylenol w/codeine simply isn’t cutting it anymore. I think with him only having 2 more doses of vincristine left it was felt that something with a bit more clout would be okay for the last few weeks. I was so excited. Finally, and at long last, Scott wouldn’t have to endure such terrible pain (and with it, high blood pressure) and could sail through his last couple of months stoned and happy. So, we get our stash of Demerol and Scott is given permission by the doctor to use it to get through the last of this cycles pain. Cool. Well it would have been if the damn stuff worked!! So much for our little Walgreens pot of 10 magic beans!! Why oh why oh bloody why doesn’t any of the really good stuff work for Scott??? Neurontin and Paxil didnt help. Dapsone nearly killed him, Reglan turned him into a pysho-monster and Compazine was just plain heartbreakingly horrific. Even the PS3 no longer holds the same mind (and pain) numbing attraction! Oh well, as long as the chemo works. That’s the main thing.

Sometime during the night the pain in Scott’s jaw subsided and David awoke at 5.30am to find him sitting in the kitchen binging on Prawn Cocktail Tayto’s. He continued feasting on salt laden foods all morning, devoured an entire pizza for lunch and still wasn’t satisfied. He ate pistachio nuts, garlic bread and apples all afternoon and evening and has now collapsed in my bed, too swollen to move. 165mg of prednisone a day will do that to you. I think we wrote once before how the kidney specialist was shocked at how much prednisone his protocol called for and told us this was twice the amount an adult transplant patient receives. Scott looks dreadful; he’s like a huge red butterball. He still has the pain but it has moved into his back now, tomorrow it will be all over his body and hopefully by Thursday he’ll be on the mend. Until next time at least.
Today I did something which scares the bejeesus out of me. I made an appointment to see the doctor for my Well Woman!!!! I have only been to the doctor once since Scott was diagnosed with leukemia. It was a very quick visit, a simple request for something awesome to dull the emotional pain and panic attacks and I was gone, vowing never again to see a doctor. Maybe its normal for parents of children suddenly diagnosed with a life-threatening disease to develop a phobia for all things medical, I don’t know, all I know is that I am horrified at the thought. (The only reason I made the appointment is because of the terrifying case of a very young woman in the UK who now has only weeks to live because of cervical cancer). I also believed that if I had my check up before I was 40 I could avoid a mammogram. So, I called, made my appointment for next week, confirmed that I could get a xanax refill during the Well Woman, clearly stated that I was still under 40 and didn’t need a mammogram only to be told that Health Insurers now cover 1 scan between the ages of 35-39 and that I would be getting one. Shit! Bad, bad news.
David has also been hassling me (and I know he means well) to have an annual check-up. LOL. I don’t think so. I know my blood pressure is beautiful (95 over 56 this morning) and so is my cholesterol. I don’t want anyone listening to my lungs and I certainly don’t want anyone looking at my blood.
But whilst this experience with pediatric leukemia and all the horrors it entails may have left me cold at the very idea of any medical evaluation, it has certainly opened my eyes on disease prevention and food. Look at what I had for my tea (dinner) ….

It is juiced broccoli, carrots, apples, lime, lemon, a big hunk of ginger and an orange! Yes I drank it and yes it was foul. This has been my diet lately along with muesli, nuts, soy milk, berries and smoothies (and chocolate, icecream and cake) and this is what Scott has to look forward to in 8 weeks. It’s got to be better than chemo, surely? Speaking of which, time to wake Scott up for his 6mp.

Darling fascist bully-boy ....

We are in the midst of the vincristine squall and it sure isn’t pretty. Vincristine is one mean bitch yet she does a great job in kicking the crap out of the bone marrow, and hopefully destroying every last cancer cell. Every cycle seems to be harder than the last and Scott is thoroughly miserable. He told me earlier that it’s a good job we don’t keep a gun in the house as he would have happily taken it and blown his brains out. I think he was being overly theatrical although Im not sure. His blood pressure has been very high from the pain but Labetolol brings it down again pretty quick, we just have to keep a close eye on it. A repeat of last year’s fiasco would not be good. He has also just finished day 4 of the 5 days pulse of prednisone and the cravings and munchies are now in full swing. As you know, the vincristine causes massive jaw pain, so to have a child with such insatiable hunger and a more-or-less paralyzed mouth is like a cruel damn joke.
So it’s been a very quiet weekend, just hanging out here trying to keep Scott (from shooting himself) amused and comfortable. David and I made a pact not to mention or celebrate Valentines Day and it was wonderful. We scowled and bitched at each other just like normal. Ha ha, screw you Hallmark. No hockey for Derry this weekend and no more for a while I guess. I’m not sure when the new season starts, not for a while I hope. Apart from hockey being so ridiculously expensive it is also a ridiculously early morning sport AND it causes to too many bruises.
Re the Paypal Link. As David said in his post we have been overwhelmed with support and are incredibly grateful and relieved. Leukemia is scary, ugly and also, very expensive and we, like the majority of you, simply don’t have spare money, let alone thousands and thousands of dollars of spare money. Thank you to Nana, Grandmomma and Papa, Nina, Shel, Kristy, the Krug family and again to PZ and Pharyngula. Your kind donations will get rid of a big chunk of our medical debt and have done much to bring our stress levels down. We also want to thank everyone for the heartwarming messages we received. They have all been saved for Scott to look back on when he is a little older. I really hated having to put up that begging button and still feel dreadful about it but you guys didn’t give us the cold shoulder, as I was expecting, instead it brought out the very best in human nature and empathy. Of course, we could have tried this ...

Sorry for no update yesterday on clinic day. We've been quite busy and Scott and Stephanie both have just felt completely horrid. Scott posted an ANC of around 2500, so the full monty of vincristine was given. Steroids started up and joint pain is ramping up tonight. That's "normal" for the first week of his 21-day cycle.

However Scott is extremely emotional right now, and only has restless sleep in spurts. He's got a high level of anxiety about treatment ending. I'm not sure if any of us know what to expect, but it is really doing on a number on him mentally. He also demanded Stephanie buzz his hair down today. He was complaining about it making him too hot and sweaty. Emotions just run all over for the poor kid right now. I can't imagine all of the things going through his head.

So Week 100 officially got a check mark put next to it on his road map of treatment. 8 more official weeks on the protocol and then......well......"follow ups". A BMA at the end. A couple of spinals at 3 and 6 months post-treatment. But no more chemo.

I want to second Stephanie's appreciation towards all the wonderful folks who have come over from PZ's website and donated to help us. She's much better at writing than I (she says I write like a robot, and most folks probably doze off before getting to the end of my ramblings), but please know the funds you wonderful folks donated ARE an incredible, unexpected help. I am humbled by your generosity towards us.

Off to see if any of us (outside of Derry, who goes to sleep in about 3.2 seconds, and sleeps like a hunk of granite) can manage some rest tonight.

To commemorate 200 years since the birth of Darwin the Royal Mail issued these postage stamps today. My mother is now running around the Isle of Wight trying to track down 1st day covers for me. Go Mom!

Darwin Day, 12 February

Whilst many familes may hand down through the generations a family bible, we dont. Instead Derry and Scott will inherit the family "bloody nora child, take your grubby little fingers off that book" Darwin collection. One of them will have to be chopped in half obviously, but och well.

4 days ago I put up the PayPal link, I wrote an explanation as to why I felt that we had to ask for help and I contacted someone who I have the utmost respect for and to whom I thought might be able to get the word out.
Well, my goodness, I never thought for one moment that this plea would, within hours, turn into a sort of mini ScottAid. The support from Dr. P Z Myers and his readers at http://scienceblogs.com/pharyngula/ has been overwhelming. Not only have we received donations but also many emails of comfort and support from around the world. Most of the donations were for $5 or $10, several were substantially larger, and it just goes to show how every little bit really does help. A total of just under $4000 has been donated!! David, Derry, Scott and I are gobsmacked and have absolutely no idea how to say thank you and let you SEE just how amazed and grateful we are. I wish I could line up everyone who chipped in or sent us a message and give you all a big cuddle.
Like I said in my previous post, we have become bogged down in medical debt. For a while we managed to stay afloat but there comes a point where you have used up all your rainy-day money and all of your families too! These donations have relieved a great deal of stress and will go a long way in helping us keep the wolf from the door.
Obviously our main concern here is Scott’s health and wellbeing. He has suffered so much in the last few years, first the dog-attack, then cancer and the side effects, a stroke, shingles, the death of his Dad and Granddad, fungal pneumonia and more recently cerebral edema. Thankfully he has a twisted sense of humor and can see a funny side to all of it – well sometimes at least – other days he just feels doomed. Oh hell, I’m waffling on again and can’t quite remember where I was going with this. I think what I’m trying to say is that the bottom line is Scott being well, and Derry too obviously, and David, and me! Health is everything. Yet, believe me it sucks when your child is seriously ill AND the debt collectors won’t stop bloody calling. No-one can wave a magic wand and guarantee a cure, but what people have done is simply shown their humanity and said, “Sure, I’ll give you a helping hand”. I just hadn’t expected so many hands!
Thank you PZ and all at Pharyngula.

Also thank you to Shel and to Kristy. You both kind of got swamped by the invasion but we saw your names in there and are very grateful to you for digging deep to help our family. Thank you.

A little Scott news … he is still fighting this cold and feeling miserable. I am in the same boat, so we are sharing my bed at night (we have been quarantined) where we cough and sneeze and blow our little noses on the bed sheets and wait for morning to come. His anc on Thursday was a pathetic 763 (neutropenic) so how he has avoided getting a high temperature is beyond me. I just hope that his body can keep fighting this without the need for a hospital stay. On Thursday, if his anc is okay, he is due for vincristine, methotrexate, 6mp and prednisone so next week will be horrible too.

Lastly, we were all sprawled out on the couch yesterday watching some drivel on the TV when an advert for Cialis came on. So, as I do in these situations, I start chattering away very loudly about the first thing that comes into my head, in this instance I went with how much I was missing tomato ketchup crisps (chips) when all of a sudden Scott, whilst still watching the Cialis Ad and with a dead serious expression on his face, pipes up with, “I have that problem too, I need Cialis”. Derry cracks up laughing and David and I just look at each other and share an, “oh shit” moment. A multitude of thoughts are running around my head, he is going through puberty after all, is something ‘wrong’? Would he even know if something down there isn’t working right? Has he read something about chemotherapy and late effects? Dammit he’s too young to have a willy problem!! So, after a moment, I turn and ask him what makes him think he needs Cialis. His reply, “I haven’t had a normal poop in months Mum, I’m constipated today, tomorrow I’ll probably have the runs. Immodium is useless so maybe Dr Tebbi will give me Cialis for my rectal dysfunction?” He was dead serious, and I am still laughing.

Oh and one more lastly, congratulations to Derry for being so awesome and being on the winning ice hockey team this year. He played well and made an amazing save. This dude was charging down the ice determined to score, Derry was struggling to catch him so decided to fly instead. He shot down the ice, splattered into the dude; hit the puck away and both of them ended up inside the goalie net. He’s all bruised up but happy as a lark. Here's a blurry picture of him going to colletc his medal:

Goodnight, sleep tight and thanks for coming by. x

Just a quick, late update tonight for those of you across the pond. Derry's team managed to win the Final tonight, by a score of 4-2. He was quite happy, as his knee didn't betray him this evening. Also happy as Anthony, who lives a couple doors down, plays on the other team.

Scott continues to have coughing fits. He is most certainly fighting the bug that has been going round here. Knock on wood - no fever to this point. As you all know, hitting the 100.5 mark results in a 48-hour minimum stay at the Hotel Tebbi (otherwise known as St. Joe's). Obviously our biggest fear is the chest congestion taking deep hold and leading us to another bout of pneumonia.

We want no complications (no one does). The danger of even minor issues reared its head yesterday with another local child. A young girl that lives in our area has been battling neuroblastoma. Jessica was responding to treatment, but needed platelets 8 days ago. Somehow the platets she received were infected, and she reacted badly. Sadly, she passed away yesterday. After all the battles she had faced, such a problem took her away.

Folks wonder why we worry endlessly about every little blood count anomaly, additional drug or procedure. There are none which come with zero risks. Everything seems a risk to these kids. It seems too many are paying the highest price.

Scott and I didnt make it to the game this morning (which is still in play) because he is still 'down with the sickness' (come on, get up, get down with it). Neither of us have had much sleep the last few nights and dragging him out of his nest at 7am this morning to go and sit on the bench at the ice sports forum didnt seem like a wise idea. He is awake now and pleasantly buzzing from his cold and flu medicines and looking forward to getting his make over later this morning.

Anyhow, the reason for my post is that Derry's team are already leading 6-nil, and its still only the first period!!! It looks like they are gonna go through to the final tonight! Bring. It. On!

PS. Damn me and my big mouth. Derry got pummeled and took a bad fall in the 3rd period by his best friend from high school (who plays on the opposing team) and has busted his knee. His team won the semi 8-1 but I'm not sure Derry will be able to play now. He's laying down with an ice pack and knocking back the ibuprofen.

As you may have noticed we have added a new gizmo to the blog. I know you are only here because you care about Scott and his welfare and I know that you would all help if you could. I also know that many of you have already been kind (given us big checks!) in helping us through these tough times. There is also the harsh reality that not only are we skint, but you are too. However the elephant is in the room, please feel free to ignore it. Should you wish to help, it is there, ready and waiting.
Any money we receive will be put towards medical bills and prescriptions. We have good insurance but a high deductable ($4000) AND co-pay ($2000). And whilst Scott may be approaching the end of treatment we will still have off-treatment bills of $6000 in the coming year for such things as breathing treatments, monthy labs and hopefully, the removal of his port. As Scott was diagnosed just prior to the end of the finanical health year then we are responsible for 4 full years of payments. Incidentals (gas/petrol/non presciption drugs such as pro-biotics, immodium and benadryl/treats/bribes at hospital/craving weeks!! etc) easily run to $1500 a year. I wanted to lay this out here so you dont think I'm pulling any old exaggerated number out of my head. If all goes well (no relapse) then this leukemia will have cost in excess of $30,000.
We had hoped , and had promised ourselves, that we would never have to do this. Thank you and sorry for such blatant squirming and begging.

Scott has been fighting a cold and for the last few days he’s been lying around on the sofa like a little white, coughing, snot oozing, sweaty, maggoty type thing.
So, I was pleasantly surprised to see his anc hadn’t bottomed out. It wasn’t great and he was only thirteen over the required magic number of 750, but at least it wasn’t zero. So he got checked over to make sure he didn’t have ebola, pneumonia or the Black Death and was given the go ahead to have his breathing treatment and chemo. Whilst his counts weren’t great it was nice to see a small rise in platelets and hemoglobin. He also had 46% monocytes which is off the charts – but good. In a healthy individual monocytes are typically between 0 and 10%, but are very often higher in someone receiving chemo and steroids. It means the bone marrow is recovering – and working. Usually within a few days of seeing a high number of moncytes the anc (absolute neutrophil count) will recover.
Hopefully he will shake off his sniffles in the next day or so because I have convinced him to come to the Spa with my friend, Sara and I on Saturday. He desperately needs his hair tidied up but since losing it all to chemo he has become rather phobic of hairdressers. His hair is still very dry, thin and unruly due to the chemo and he looks like he’s been dragged through a hedge backwards. Anyway I told him it was either a shearing at Sports Clips or a luxury cut and style at the Spa. After a long discussion on where the prettiest hair ‘cutters’ worked, he picked the Spa. He also managed to negotiate a trip to Waffle House on the way back. GROSS!
Also on Saturday (at 8am!!!! Ugg) we have to be at the Ice Sports Forum for the Fall Hockey League semi-finals. Derry’s team made it through. Cool huh?! Not only that but they went through in 1st place. If his team wins they will play again at 7pm in the final. I bet if I give him a handful of Scott’s steroids his muscles and hormones will go into overdrive and he’ll fly across the ice like Gretzky on speed. Such a cunning plan.

That’s it for now, I feel like I have some sort of fungus growing in my throat and its doing my head in. Gonna go lie down.

Our pretty kitty is growing up->

Am I childish or are these hacked road signs really, really funny?

Replies to all my lovely messages:
Yes Mum it sucks looking at old photos and I hardly ever do. Derry has barely changed since he was a baby but Scott has taken a beating from this dreadful disease. Maybe this summer will be kind to us and Scott will get his groove back. He still dreams of being an FBI profiler (or if that doesn’t work out, a stripper, and no, I am not making that up!!!!!), so he has about six years to get fit, get educated and put this nonsense behind him.
Sherry, like I said above I hardly ever look at old photos. How you find the strength to do so amazes me. But everything you do amazes me. Scott is bedazzled by you too, especially since he learned you have a golf cart. :)
Please support Sherry’s wonderful charity if you can …
http://www.givinghopethroughfaith.org/
or buy her book. For those in the UK, I will gladly post it.
Sandie my sunshine, my bad influence, unless you have deteriorated dramatically in the last few years then I think the “old crone in the mirror” is simply a figment designed to make me feel less old and saggy. But that’s okay, you may continue feeding my schadenfraude troll – he likes it! And as for you being the kind of girl my folks warned me about – LOL – yup you’re probably right. If it werent for you and your type I'd be a non-smoking univeristy professor by now. And just for the record, if I do end up doing a “grizzly man” in years to come (after our date at the dumpster); my folks can come looking to YOU for answers! Let me know when you get Rock Band 2 on the PS3 – I’ll whoop your arse on Aqualung – yes I really can do it, 94% on expert!!! I rock.
Carolyn, oh dear … I am so paranoid as to who is looking into our fish bowl and when you say "so many people come here on Thursdays for updates" it gives me the heebie-jeebies. It is hard writing this blog, trying to take into consideration who is reading and tip-toeing around my words so as not to offend anyone. I try to keep this journal fairly limited to Scott and his trials and tribulations but needless to say, so much other ‘stuff’ gets thrown into the mix too – most often written when I am at the depths of despair or half asleep. And for us to be called 'inspirational' kind of makes me chuckle. There are, sadly, a great many blogs and carepages out there devoted to sick children, and my goodness, 99% of those families seem to handle it all WAY better than we do. We're either running around like headless chickens in a permanent state of OMGishness or mute and shocked, still stunned after 2 long years. Anyhow, when push comes to shove, I'd sure rather have people that come here and give a damn than be all alone and talking to myself.
Angel Laura, you think I’m funny?? Wow, I’ve been called a lot of things in my life (stubborn and opinionated most often) but funny isn’t usually among them. I know I am fiercely sarcastic (not necessarily funny) and have a very dry sense of humor. I doubt either come across when I write updates as, like I said to Carolyn, I’m either in a foul mood or half asleep. I keep thinking about starting another blog and REALLY letting rip (oooh I get so darn mad at the world, today I’m mad at the lady who gave birth to 8 children a few days ago, Ted Haggard and the UK Prime Minister) yet I am not sure I’m tough enough to handle the death threats that would go with the territory. And Angel Laura, you are absolutely not a 'small part of our lives', you are one of the best parts of our lives and its high time I told you that more often. Damn, thats a bit sappy isnt it. :)
NANA!!! I lured you out. Yay for me and yay for you for figuring out how to reply. Please do so more often as I would love to get your advice and hear your astute observations. I hope that you are feeling good, your leg is healing, and after seeing the news, I hope that you are staying warm. Oh and please consider adopting Sandie. You have so many grandchildren as it is so surely another one – and a witty and uber- brainy Italian at that – won’t be a problem. She even makes homemade Christmas cards!!
Aunty Dawn, isn’t it time you had a blog or even set up a Taylor group blog?? You do those lovely corny Christmas newsletters so well and since the family has spread (ran away) to every corner of the globe it might be something to do on a cold and rainy English evening?! As for our gossip, well I think David came close to putting me on the first flight back to Gatwick on Superbowl Sunday after my rant against American football. I’m thinking of getting ‘When In Rome …” tattooed to my forehead but even then I just know I wont be able to stop mouthing off. But you gotta admit, it sure does look like rugby for pansies.
Mrs. Tinsley, thank you for your reply and for checking in on Scott. We did intend coming to the FLVS event on Saturday. I had planned on taking Scott for a much-needed haircut and then coming to Barnes and Noble to meet with you and the other teachers. However, and without getting into too many gory details, his unreliable tummy let rip and leaving the house was no longer an option. Scott’s chemo side-effects just keeping get worse and worse. I am trying to stay positive about them all disappearing into thin air once he finishes treatment but I am sadly learning of many children who are long off-treatment and still suffering from these effects.

I'll leave you with this cool fossil that I was just reading about (not enough pictures though), an early whale with legs and a baby about to be born...
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0004366