Well we have started another round of the good stuff and already the pain is kicking in. Oh how I HATE vincistine. Scotts counts were high again today at 2245, and as I suspected, they are planning on yet another chemo increase if they remain that way over the next few weeks. I believe he is close to the upper limit on how much they are allowed to give. Whilst I understand the need to keep the anc low it is upsetting that he has to be pounded by additional chemo. All these toxic drugs can have lifelong effects and so each increase raises my anxiety.

His platelets took a hammering which ofcourse has spooked the hell out of me. The wonderful Nurse Vikki (again!!) told me to look into her eyes whilst she spelled out - D O N O T W O R R Y!!!! If only it were that easy.

I was SO relieved to recieve his x-ray results - no signs of anything abnormal. This is very, very good and means the steroids have not caused bone density damage. It still may happen but for now, all is well.

So we have another steroid/vincristine bitch of a week ahead and I am thankful. Unfortunately the worst day of pain will fall on Scott's birthday. We'll just have to do our very best to make it perfect. Stick the cancer in a drawer out of site and refuse to mentions it's name. It still seems surreal. My baby has cancer?

Thanks for checking in and have a great weekend.

Oh and a ps for Ben ... thanks for following Scott's progress and no, he hasnt been prescribed anything to help his bones. I do give him tums, yoghurt and as much milk as he will tolerate (which is not a lot) almost every day, for the calcium benefits. I hope that this will be sufficient. I will be mentioning this to the docs though. Thanks for your advice. :)

One more ps for April ... my emails to you are bouncing back and I think that yours to me are being blocked. I may regret doing this on the internet but here is my phone number - . Call or text when you get a chance. Hope Logan is doing good and we'll see you soon. :)

Last ps I promise ... It was on the BBC today that childhood cancer survivors are more likely to become smokers, I guess that whilst this is sad it is also understandable and no big shock. It is becoming clear to me now how much Scott is starting to become rather blase where medicines are concerned and also how he relies on drugs to keep him stable, drugs such as ativan, paxil (which doesnt seem to work all that well) and tylenol/codeine. This is a worry. Whilst he is incredibly clever and sensible I can absolutely see how he could/survivors may feel a pull towards risky behaviour. Perhaps due to long term depression or stress or maybe because you have an increased sense of being "untouchable" or invincible. Something most young people feel, yet possibly amplified among survivors. You kicked cancer's arse the first time and if need be, could do it again. When you spend 2-3 years being pumped full of toxins and "stuff to make you feel a little better" whats a little cigarette/joint/cocaine between friends??!! Whats the next big thrill??!! Or maybe, what is simply going to keep you stable? Or, what is going to take away the fear of it returning? If anyone has an 'addict' gene it is most definately Scott. I will be like a damn hawk. The doctors already call me 'hover-mother', well they aint seen nothing yet!! Hopefully my training and years as a youth and special needs worker will stand me in good stead. I hope so!! I think I may need ALL the help I can get.

Scott feels horrible today. He refused to get dressed, brush his hair or teeth, he just wants to lay in bed, alone and in peace. The only smile came when he tucked into an order of Domino's garlic bread (which faded fast as soon as it his his stomach). He also has a headache which sent my worry-meter sky high and threw me spiralling towards all that is bad ... xanax, coffee, chocolate and cigarettes.
Tomorrow is clinic day and if all looks good it will be the start of round 25 and another lovely week of misery. I know we have said this so many times but predictable misery is far, far better than the alternative.

"I choose chaos."

Today we went to see The Dark Knight and it was incredible, probably the best movie I have ever seen and all because of Heath Ledger and his portrayal of The Joker. The boys definitely agree, The Joker rocks!! Scott was just saying a moment ago what a madman he is, but that he made him laugh and would make a great friend!! Huh?!! The Joker wants for nothing; he has no plan and is the perfect amoral villain whose only goal is chaos and mayhem. His appearance is crazy and his mannerisms strange. We all watched, mesmerized and shocked. A very slick movie indeed and if I could, I would go see it again tomorrow... and the day after that.

Thank you Sherry for a great afternoon.

Was teaching Scott a little about Lowry earlier (he still prefers Banksy sadly) and stumbled upon this little gem...

I think the above photo describes pretty well how he is feeling although it was taken when he was in a good mood, and at a time when he was almost mocking himself. Scott is having the most incredible mood swings, one moment he is his normal, loud, happy and cheeky self, the next he is in despair. A lot of his misery is emotional and psychological. He is at his wits end dealing with leukemia, with the pain from the drugs, with the nausea, being cooped up at home and unable to play in the dirt with his friends. He said recently that cancer has stolen his childhood. I tried to say all the right things but we are all so depressed with the situation and it’s hard to believe that things will one day be back to normal. This has only been going on for 18 months, not long really, but life before cancer seems such a distant memory. Those carefree days are a blur. I look at old photos and it is like looking at a different family. Will we always carry that ‘deer in the headlights’ look or will it fade? Leukemia treatment is so long and arduous (and that’s IF all goes to plan!), it’s a real tough bitch to deal with. Someone recently said that their personal cancer “was a cakewalk” compared with what their child had to deal with. Yes many survive, but to get there is a very long road.

Scott is also distraught at losing his dad. Understandably so. He was doing okay for a little while but lately it is weighing heavily on his mind and heart. He has dreams of Callum, good and happy dreams where all is well, then he wakes up … Dad is gone, Grandad is gone, friends are gone, and he has to get up, face the cold hard facts and endure another day of cancer.

He has also started swearing. Oh my, just where could he have gotten that from?!! Every now and then he’ll throw a real humdinger into the mix. I’m sure it all relates to his anger and depression and I can’t say that its number 1 on my priority list. In fact it’s kind of funny to see him looking all angelic and cute, sitting at the counter doing a Pokemon jigsaw puzzle and suddenly let rip with words that would make a fish wife blush. I’m exaggerating a little, but you get my point. Maybe it’s genetic. The Scottish language is mostly curse words anyway. So much so that you don’t even hear them after a while. Oh how I miss it. Americans are so very polite... except for when they are shooting each other, or firing up the electric chair, "shock and awe"-ing, and such things.

One step forward, three weeks back ...

We have been in Florida for nearly 4 years now and finally it is starting to dawn on Scott that flip-flops are a great invention. However he still hasn’t got the hang of how to walk in them and so today, within seconds of walking into clinic, he tumbled head over heels and twisted, fractured or broke his ankle. The jury is still out but he was sent for x-rays and I’m guessing the fact that they haven’t called me yet with results mean nothing major is showing up. It was, and still is, causing him a lot of pain though and the doc was keen to do x-rays as his bones could be in a bad way after all the treatment he has received. Steroids can lead to a loss of bone density; basically his bones could resemble those of a 60 year old woman! The oncologist will let me know next week if his bones have been affected. Obviously we are hoping that this is not the case.

As for his lovely blood, well all looked good again so he downed another shot of methotrexate. His anc was still a little high at 1750 which may mean yet another chemo increase in weeks to come. This would not be good for his stomach but would pack a little extra punch against any remaining leukemia cells. His platelets were normal at 266. This is the number I keep a very close eye on as platelets are very often the first to drop when something sinister is going on.

I was kind of disheartened to learn that I am ahead of myself on our protocol. I was only off by three weeks but three weeks is a long damn time when you are living this nightmare. I just want to get to the end and start putting some distance between us and cancer. Our obvious fear is the ‘r’ word. Half of all t-cell (POG 9404) relapses occur before week 62 (we are at 72 but it was been 78 weeks since diagnosis – yes today marks 18 months since we got hit by the bloody cancer bullet – a day that I have never yet written about and probably never will) the rest occurring from week 63 to several years later. Having said that, relapse would be unusual after a remission of three years. That is still 80 weeks from now though, a long way off. Yet even when we do finally stumble down in relief and mercy at the hallowed gates of remission, I doubt I will find true comfort there. The worry is here to stay.

I wanted to end on a happy thought but couldn’t think of one so instead I’ll just say that it seems poor Scotty may be about to lose his hair again. No big deal in the grand scheme of things but Scott is obviously scunnered about it. Me too. It’s so nice being able to leave the house lately and not have people stop and stare or give looks of pity. More importantly I can look at him now and not see cancer. Baldness is just so in your face.



Thanks for stopping by and checking on my boy.

Christian the Lion ~

For the second consecutive day the sun is shining in our little corner of Florida. We have had endless days of grey skies and rain, rain and more rain, which only the weeds in my snake-pit of a garden seem to enjoy.
We want to go somewhere and do something, we have cabin fever and if we don’t get out sometime soon the next catastrophe in our lives could end up being familicide. It could get ugly. Who will snap first is the million dollar question. We have all the comforts of a 21st century life. A jumbo TV, a PS3 (PS2 and PSP), an Xbox360, computers, toys and games galore, we had a Wii but it sucked so we sold it, we even have a pool. I am so bored I even made breakfast this morning.
We are not terribly exciting people it has to be said, all we want is a little freedom, fresh air and ice-cream. But it would now seem that we are stranded. The cumulative effect of chemo and the recent increased doses are wreaking havoc on Scott’s guts. The poor kid is suffering through one day after another with what Activia term so nicely “irregularity’ – LOL. I won’t go into graphic detail, I am sure you get the idea. He is miserable, sore, uncomfortable and very, very pissed off with this whole ordeal. He no longer wants to swim or walk with me in the evenings, it seems he is hunkering down, doing his time, and waiting for this to pass.
I pray (and I use that term loosely) that in just over 8 months this will be over and his body can slowly but surely start to release all the toxins, recover and heal. I know that I shouldn’t be whining and should be grateful he is home rather than in a hospital bed, and yes I am relieved, but even when things are going ‘well’, for most children this is still a cruel and nasty disease to treat.
I wrote a few weeks ago that we would be battening down the hatches, we have and we are, it would just be nice to come up for a little air once in a while.
As I was writing this Scott managed to find his harmonica, oh dear, it’s going to be a looooonnng day!

The joy of gardening in Florida...

I quit.

Just a quick update. I'm tired and I need to sleep. Had a horrible dream last night about my sister, woke up, too scared to open my eyes, and too scared to go back to sleep again. She was the grim reaper and had come to take my soul, armed with a broom instead of a scythe!! I screamed and screamed, but no sound came out. Uggg. I hate dreams.

Scott had clinic today and all went well. His anc was 5500 (steroids!) and all other bloodwork was good, apart from baso (I think) which was elevated and could indicate an allergy. The nurse was a little unsure but said not to panic. So I won't. LOL. Whilst I was there I was introduced to a new cancer Mum from Liverpool, her 16 year old son had recently been diagnosed with Hodgkins Lymphoma. What a nice kid he is and has this great Liverpudlian/American accent, you got to hear it to believe it!! Nice Mum too.

So, Scott had his methotrexate and then off we went to his next appointment with the optician. David also had an appointment and both of them got new prescriptions and new specs ordered. As I type this they are both bedridden (and softly whining) with headaches and sore eyes from the drops.

As for Kev ... well he is a bit of a medical mystery but is doing a little better. He has had the doctors all confused but has been moved to the stroke ward and so I guess that is where they are currently leaning. Thankfully he has bouts of consciousness and has squeezed Mary's hand, a big move in the right direction. Mary said the stroke ward is full of dottery old people with the exception of Kevins bed which is usually surrounded by young folks blasting Hannah Montana CD's in the hope Kevin will 'snap out of it', jump out of bed and leg it! Kevin means a great deal to me, as a teenager he lived with me for a couple of years, he was a pain in the neck but so incredibly cute and loveable too. Hopefully he will make huge leaps and be back to his normal, annoying self very soon.

Thanks for checking in. Over and out.

There is surprisingly little to be found on the internet about t-cell ALL. I guess considering only 400 or so children (and even fewer adults) a year in the US are effected then I guess it is understandable to a point. Reliable statistics and information is hard to come by.

We were ofcourse warned at the beginning, not to do our own research, and for good reason, most information is either out of date or inaccurate. Did we listen? Certainly not. I remember the first document I read after being released from hospital (following diagnosis) quoted a 40% survival rate for t-cell. Then, and to much relief, I noticed the date it had been written!

Before Scott's confirmation of ALL sub type it was presumed he would be pre-b, a survival rate in the high 80 percentage range was given. A few days into treatment t-cell was confirmed and and 5 year event-free survival (event being induction death/relapse etc) dropped to between 70 and 75 percent.

I have since questioned our doctors about this figure as it would seem that survival for t-cell is very much on the increase. One of the doctors has agreed and said latest evidence is showing t-cell survival to be getting close to pre-b. This is all down to the disease being recently (within the last 10 years or so) recognised as a much more aggressive subtype and therefore requiring heavier drugs, a shorter break between cycles and radiation. It is also of interest that a specific gene has now been identified which may play a part in future treatment and an even better success rate.

Having said all this, I am still very skeptical at the validity of statistics and the results of trials. I have heard too many whispers as to the ethics involved, the 'spin' and recruitment of patients.

It is a cruel disease, physically and mentally draining, year after year. Some children have been in treatment for a great many years and too many dont make it. At the end of the day the odds mean nothing. Survival is either 100% or 0%. Every child is a statistic one one.

Study results of incorporating high dose methotrexate, with leucovorin rescue, into the protocol. Obviously this increased survival and the phase III study is now the common treatment for t-cell....


Improved Event-Free Survival (EFS) with High Dose Methotrexate (HDM) in T-Cell Lymphoblastic Leukemia (T-ALL) and Advanced Lymphoblastic Lymphoma (T-NHL): a Pediatric Oncology Group (POG) Study.
Sub-category:
Pediatric Lymphoma/Leukemia
Category:
Pediatric Oncology
Meeting:
2001 ASCO Annual Meeting
Abstract No:
1464
Citation:
Proc Am Soc Clin Oncol 20: 2001 (abstr 1464)
Author(s):
Barbara Asselin, Jon Shuster, Michael Amylon, Edward Halperin, Robert Hutchison, Steven Lipshultz, Bruce Camitta, Univ of Rochester Medical Center, Rochester, NY; Univ of Florida, Gainsville, FL; Stanford Univ, Palo Alto, CA; Duke Univ, Durham, NC; SUNY Syracuse, Syracuse, NY; Midwest Children's Cancer Center, Milwaukee, WI.
Abstract:
Although lymphoid malignancies with T-cell immunophenotype are associated with distinctive clinical and biologic features, true lineage specific treatment has not been identified. The Dana-Farber Leukemia Consortium (DFCI) series of regimens, in use since 1981, showed excellent outcomes for patients with advanced T-cell malignancies. The results of a recent trial of the Berlin-Frankfurt-Muenster Group suggested that HDM was beneficial in treatment of T-ALL. The currently ongoing Phase III trial, POG 9404, was designed to determine the effectiveness of 4 doses of HDM when added to a multi-agent chemotherapy backbone modified from the DFCI protocol. T-ALL and T-NHL patients were randomized at the time of diagnosis to the standard arm with or without HDM (5 Gm/m2) and leucovorin at weeks 4, 7, 10, and 13 of therapy. A second randomization assigned patients to treatment with or without dexrazoxane, but these results remain blinded. Between 6/96 and 9/00, 221 and 220 eligible patients were randomized to No HDM and HDM therapy, respectively. The observed (obs) and expected (exp) number of treatment failures are shown below. The logrank Z statistic at the interim analysis of 9/00 was 3.12, which exceeded the O'Brien-Fleming bound of 2.89, based on 74 of 123 planned failures [p value = 0.0018 (two-sided)]. Three-year EFS (SE) are 72.2% (6.7%) vs. 86.0% (5.6%) for the No HDM and HDM groups respectively. We conclude that addition of HDM to this chemotherapy regimen, results in improved EFS for these patients due to decrease in occurrence of induction failure and CNS relapse.





Group Obs Exp* Relapses BM/CNS/BM+CNS Induction Failures
No HDM 49 35.5 29 (8/13/4) 16
HDM 25 38.5 15 (8/5/0) 8
*Adjusted for dexrazoxane randomization





An article on Notch1 which I am going to have to ask Dr Tebbi about...



http://bloodjournal.hematologylibrary.org/cgi/content/full/108/4/1151

I think that the time has come for our little family to tattoo hexes onto our foreheads.

I received the dreadful news this morning that the boys Uncle Kevin has been admitted to Aberdeen Royal Infirmary and is currently in a coma. He is only 31 and tests are being run to find the source of his trauma. It was fortunate that he was found by concerned friends but he has been this way for at least 3 days now.

Ironic that 14 years ago Derry had just been born at the same hospital. Granny was there then and again finds herself at the ARI, this time under terrible circumstances.

Our thoughts are with him.


















Update: I have spoken with his nurse at ARI and there would seem to be something suspicious on his brain scans, although still inconclusive. Kevin is also diabetic and his blood was very screwy on arrival, probably due to being unconscious for many hours prior to being found. Nothing more is being done today to find the source of his problems. It is at times like this I am grateful for the US healthcare system.

It’s Derry’s birthday!!
(well in the US still an hour to go, but it's the 9th in Scotland so on a technicality we should be lighting the candles and letting the merriment begin)
His birth was fairly uninteresting I suppose but for me, the best day of my life, and for him, fairly important too! He started life as he meant to continue … late. I was about 2 and a half weeks overdue but had been having contractions for days. I had showed up at Torphins Maternity Hospital (not much of a hospital it only had 2 maternity beds) at 3am several nights in a row trying to convince them I was about to have my baby.
“Nope, you are not in labor.”
“Yes I bloody am.”
“Go home Mrs. Paterson, you are not in labor and I am a busy woman.”
“Oh yeah? Busy? Doing a little broomstick repair? Stewing up a little eye of newt?”
Finally, after a few days, I got the call to come in; the baby had to be born one way or another. They gave me an injection and still nothing. Later that night the midwives gave up and sent me off to Aberdeen in an ambulance with Callum chasing behind in an illegal car and a suspended driving license. Yeah baby, we were badasses!
In Aberdeen they pulled out the big guns (and the big stick) and broke my waters. 6 hours later after nothing very impressive pain-wise they told me to push. Well I didn’t get that ‘push thing’ and even after they showed me what forceps looked like I still didn’t get it. In minutes the room was full of doctors, midwives, a teeny tiny Asian lady brandishing the aforementioned instruments of torture, and some mystery onlookers.
A few minutes later Derry was extracted. I asked if it was a boy or girl. “Oh most definitely a boy, take a look at THIS”! I should never have told Derry the doctor’s first observations of him. It seems to have gone to his head.
He was beautiful, bruised from the forceps and very yellow. I had him for only a minute before he was whisked away and thrown under a sunlamp to treat the jaundice.
Poor Callum was a wreck; he disappeared for a smoke and a bit of a sly big-girls-blouse cry. I was left with a mammoth plate of toast, a nice cup of tea and a telephone. It was about 3am and I remember calling Mum to let her know she was a nana.
“It’s a boy Mum!!”
“Oh dear, I am so sorry”
Yes that is really what she said. LOL.
“Do you have a name yet?”
“Yup, his name is Derry.”
“His name is WHAT?????”
I still think it is a great name. It is Gaelic and means red warrior. There are many places in Scotland and Ireland named Derry although it has proved to be a pain in the arse in the USA. The accent means it is pronounced ‘dairy’ over here. GRRR. His middle name is Mclaren which is his clan name, his roots, and of which he rightfully has much pride.

Happy 14th sweetiepie and lang may yer lum reek!!
Isnt he a cutie! ...

Due to last weeks festivities we had clinic today. Next week we will go on Tuesday and the following week we will get back to our regular Thursday appointment.

It was a little worrying going for 11 days between clinic visits and delaying chemo but the doctors had said all would be fine, and thankfully it was. His anc was 2200, platelets 250 and biliruben at 1.1, well within normal to go ahead with the full dose of vincristine, methotrexate, 6mp and orapred.

One thing I don’t think I have mentioned before is the placing of Scott’s port. It looks kind of normal but it is actually situated in a dip in his chest and requires very precise positioning of his body prior to access otherwise it just wont work. Last time he was accessed was painful and tricky and again today it took the nurse a little time and patience and thankfully ended with success but with Scott in floods of tears. I was told that as he is putting on weight it just sinks lower and lower into his chest. It may not sound like a big deal in the grand scheme of things, and the worst case scenario would be a new port placement, but it is certainly upsetting for Scott. He can cope with puke, with blood, with all manner of things, but he HATES his port and anyone having to touch it. Any poking and prodding more than absolutely necessary makes for a very miserable child.

Today marked the start of our final ‘trimester’. He has been through 24 cycles and has 12 to go. A milestone of sorts but does nothing to ease our anxieties. 52 weeks ago was Derry’s birthday and was one almighty bitch of a day. Scott was going through cranial radiation; he was very sick, he was bald as a coot and had just been told the spots on his bum were in fact shingles. I was in full scale panic mode not realizing shingles were highly treatable and no big deal, I also had conjunctivitis and wasn’t allowed on the ward. Thankfully my Mum was here and saved the day. I would like to allow myself to think that we are moving forward and the worst is history but it doesn’t always work that way when you are dealing with leukemia. It can rear back up at any time and bite you hard on the arse. I would like to see the light at the end of the tunnel but with all that our friends have gone through lately, and with all that I see, it still seems like a very bleak situation indeed.

12 cycles to go. 36 weeks, if all goes according to plan. We let Scott out of his bubble last week and so far so good. It’s time to batten down the hatches again and ride out the rest of the storm.

Camp Sunshine pic's

Well we survived the wilds of Maine and it was stunning! When we arrived on Saturday afternoon at Portland we stepped outside to a lovely cool and drizzly afternoon, to a glorious place where you didn’t sweat constantly or crave a set of gills to survive. The weather was most definitely Scottish and so was the countryside. I loved it.

After a bit of a kerfuffle with transport we finally made it to Camp Sunshine. The site is on the shores of Lake Sebago, at eleven and a half miles long it is the second largest lake in the state. It is an incredible part of the world to be sure. There are no palm trees, no lizards, no alligators, no big huge Wal-Mart’s on every street, no 8 lane highways, just old world charm, lots of fir trees and clean fresh air. I loved the architecture of the houses and buildings; I loved the twisty roads, the lack of billboards, the small, family run businesses and seeing hills again felt like coming home. Maine rocks!

Anyhow, back to camp…although I’m not sure where to start!
The camp itself is impressive and well thought out. Accommodations were basic and had me worried but we made it though 5 days without a second bathroom or vacuum cleaner. Obviously though Camp Sunshine was built not as a spa resort but with communication and interactivity in mind, and for those of us who are not people friendly, well, there are kayaks and a wide open lake!!

The main building housed the dining hall and theatre, games rooms, a computer area, arts and crafts, the ‘tot lot’, a pool and various meeting rooms. Outside there is mini-golf, archery, a rope course, climbing wall, lots of game areas and THE MARINA. The whole site was very tastefully done and well maintained.

There were about 40 families at camp, and helping out the full time staff were 75 volunteers. The volunteers were mostly college kids, many of whom had survived pediatric cancer. There were also others, of all ages, who just simply wanted to be there and give their time and love to a valuable and worthy cause. I met a wonderful lady who was there with her large family; they had given up a week to volunteer wherever they could be of assistance. One of her children is a step-child whose mother had died a few years ago from cancer. That is only one example of the great people we were lucky enough to meet. It was also good to see a few familiar faces. Two other families from this area flew up to Portland with us and on arrival we bumped into a great family we met at Camp Boggy Creek in the spring. Their son is the same age as Scott and had just finished treatment for bone cancer. They also have a stunning daughter the same age as Derry!!!

I will write more of camp over the weekend as I can’t concentrate anymore due to the noise outside. It is the 4th of July and for those reading this outside of North America, think Battle of the Somme! Not only is there millions of dollars worth of explosives being detonated outside my door, we also are in the midst of a thunder storm.

I'll leave you with Scott in drag ...

Quick reminder

Just a reminder that Scott did not have clinic today. We're currently on the way back from Camp Sunshine and will post a bit later today.
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