ScienceDaily (Sep. 29, 2008) — Survivors of childhood or adolescent cancer have a greater than 8-fold increased risk of death than the general U.S. population 16 to 32 years after hitting the five-year survival mark.
The proportion of childhood and adolescent cancer patients who survive five years after their diagnosis has been growing over the last four decades. However, past studies indicated that these individuals continue to have excess morbidity and mortality due to their original disease and treatments.
To find out what the long-term risk of death is for these individuals, Ann Mertens, Ph.D., of Emory University and Children's Healthcare of Atlanta and colleagues examined data from 20,483 five-year survivors who were diagnosed with childhood or adolescent cancer between January 1, 1970 and December 31, 1986 and enrolled in the Childhood Cancer Survivor Study.
The researchers searched the National Death Index and state death records for deaths occurring between January 1, 1976 and December 31, 2002. With that information, they calculated cause-specific mortality rates and the overall ratio of observed deaths relative to the number of expected deaths in the general population, which is called the standardized mortality ratio.
During the follow-up period, 2,821 (13.8%) of the five-year survivors died. The overall standardized mortality ratio was 8.4 and the absolute excess risk of death from any cause was 7.36 deaths per 1,000 person-years. Of the 2,534 individuals whose cause of death could be identified, 57.5% died due to disease recurrence. When compared with what would be expected in a population of this age group, substantial increases in deaths due to subsequent malignancy, heart disease, and pulmonary problems were found.
"In conclusion, children and adolescents diagnosed with cancer continue to be at elevated risk for death due to recurrences of the primary disease, and as a result of late effects of therapy," the authors write.
Adapted from materials provided by Journal of the National Cancer Institute, via EurekAlert!, a service of AAAS.

With the exception of Oasis

'cool-ness' is most definately dead. Rest in peace Paul, you were incredible.

http://www.holeinthewallcamps.org/tribute.htm

Sorry for the lack of updates. I am a moody, lazy old trollop and I simply couldn’t be bothered. I truly hate doing this blog, and I’m sure most of you don’t get much enjoyment from reading either, however it beats having to answer the phone and go over and over (whine about) all my worries and concerns. Probably the worst question I am ever asked is, “… and how are you?’ How many ways are there to reply what a damn train wreck I am?

Scott’s blood was okay today. Anc too high (so much for increasing his chemo!), funky cells showed up again, but his platelets have increased quite dramatically and platelets are good! Scott had a major puke-fest though, it wasn’t pretty and the heavy-duty cleaners were called in to decontaminate the room. Poor kid, he is so scunnered with all this. The chemo effects just get worse and worse. From speaking with a nurse today it seems his “good bacteria” is non-existent so we’ll be trying the pro-biotics for a while and see if that helps.

Now for something really shocking. Derry, the blonde of the family, is currently the highest ranked freshman at his school in Maths with a 99.25 average!!!!!!!!!!! We are stunned, pleased as punch, and ever so slightly worried. Either every other freshman at his school is really, really dumb at Maths or Derry has been micro-chipped by aliens. We’ll be keeping a close eye on him. Also, some more Derry news, he made the hockey team and has his first game this weekend. This season he is in a ‘checking league’ which means the players can legally beat the crap out of each other. Great, that’s all we need, more medical bills.

I have got some more stuff to update on, more photos and even a cool video but it can wait for another day. Oh and maybe even a rant coming on a DVD we received in the mail yesterday and which has David and I staggered and furious. Anyone else receive “Obsession: Radical Islam’s War against the West” in the post? Absolutely shocking that this propaganda (poorly disguised as responsible education) and hate mail is being circulated to millions of American homes. Don’t misunderstand me, I am far from being a sympathizer, but this DVD is nothing more than incitement, fear-mongering and a very under-handed political maneuver. Hate, ignorance, anger and bombs will NEVER make countries such as the US or UK safer places.

For now, its time for bed (said Zebedee).

Scott’s anc was almost 8000 today. His platelets dropped substantially from last week, so I will worry for the next 7 days. He is still very weepy, still aching from the vincristine, his temp is a little high (in the 99's) and he looks like a grossly obese chipmunk from the steroids. He has swelled so much that even his 'fat clothes' no longer fit. I’ll write more in the coming days, I don’t have it in me right now; it’s been a difficult week.

It’s been a tough weekend for our little Scott. The vincristine is causing him terrible pains and the steroids lead to what can only be described as an emotional breakdown. The personal trauma the disease has caused, the loss of his dad, his granddad, and friends who were fighting the same battle, all these thoughts and all his grief become a mental hell. I am just too sad to write any more.

It’s been a long day of doctors and medical stuff but I am pleased to say we survived it all and we even got some good news.

Scott’s counts were high yet again – his anc was 2950 – so another round of the good stuff was started. He had his vincristine, methotrexate and has started 6mp and steroids. My plea for a little more chemo was discussed at the weekly meeting and was approved. Like I said last week he has already hit the ceiling as far as vincristine is concerned and is also getting 150% of the other drugs. However the protocol does allow a little leeway at the doctor’s discretion so they agreed to an extra 10% 6mp. Should this be metabolized without a major drop in counts then we will increase again. So we now brace ourselves for another week of pain, codeine and ativan!

Derry had his appointment with the spine doctor who did more x-rays and confirmed the scoliosis but did not see the ‘minor disc spacing’ which had been reported by the primary care doctor, nor did he see any other abnormalities. *Big sigh of relief!* The doctor Derry saw today is internationally recognized and came highly recommended so we are very much re-assured by what he saw. He has asked that Derry come back regularly though as Derry is growing rapidly and could easily reach well over 6 foot. (Uncle Kevin is 6’7”) Added height will only exaggerate the spinal curve and may need correction in time.

David then had his visit with his physiotherapist and doesn’t seem to be enjoying it one little bit. Lots of weird exercises and lots of pain. He has many weeks of this and there is only a small chance of success. Surgery may be the only option at the end of the day.

So that’s it. Im tired and off to kill pixels on the x-box. G’night.

To boldly go where no man has gone before.

David simply uttered, "it's so very sexy", when I asked what he thought of the collider this morning. Scott has visions of a hungry black hole. Initially content with a bucket full of sand to chow down on, but before long screaming out for elephants, cheese, umbrellas, Rwanda, trousers, literally eating us out of house and home.
An expensive gizmo, lets hope it provides answers and knowledge ...

Move over Griswalds

Today we bravely decided to head out of the "cabin" for a fun day at Madeira Beach. We were just about to cross the causeway when a good samaritan sped up beside us and made frantic, pointy gestures to the rear of our car. So we pull over and see this...

And ofcourse, as luck would have it, the spare was flat. Thankfully our wonderful gps (which we fondly call 'cake' after the evil character from Portal) let us know that there is a tire shop just 0.2 miles from our location. However, as we were to discover, Southern Tires is closed on a Saturday. Awesome. So after a little while feeling sorry for ourselves, and spurred on by visions of Amundsen and the like, our interpid explorers (David & Derry) set forth, under a brutal sun, to find a nice new tire. About 2 hours later, some dude in a truck pulled up next to me with David and Derry and a beautiful, not-flat, tire.

Derry pondering the situation...

Onwards to the beach, but a yummy dinner at the chipper first...

We were hot and sticky, Derry and David were covered in oil, the sea sounded like such a great idea. But lo and behold, what did we find but our lovely beach littered with flubbery little primordial blobs of goo. Here is a dead one, washed up after last week's storm, they werent all dead though...

Grr ...

Now I am no jelly-fish expert but it seemed like a pretty dumb idea to let Scotty out there with them. I have been stung before (Portsmouth beach) and boy did it hurt. Pain he can deal with but we certainly didnt want to risk any added toxicity to his already overloaded body. There is also the danger of anaphylactic shock. So we lay around, none of us brave enough to risk the savage sea. Derry sunbathing, LOL ...

Well they soon got sick of that, so slunk off to explore and look at the jelly-fish. As soon as my back was turned, they were in the water! Ofcourse I screeched a little, cluck-clucking like the mother hen I am. They just giggled, parked their bottoms down and talked about video games.

We made it home without incident and everyone except me, was soon fast asleep, tired by tire troubles and the sea air. Scott could barely walk from the car to the house, it looks like the vincristine foot drop is becoming a big issue which we will have to discuss on Thursday. Poor kiddo is developing a real limp. He curled up in my bed and watched his second favorite show (first being Ghost Hunters ofcourse!) Lockdown. Both of my grandads were prison officers and he has such a passion for doing this when he is older. Obviously I am ramming a career in anthropology down the little guys throat and do believe it could be working. He still believes being the warden of San Quentin is a sexier job than say, baking in the hot sun, somewhere in the Great Rift Valley with only a chisel and a tooth brush for company.

Time will tell I suppose. LOL. Get it??

So, I do believe it is time for bed for me too. Thanks for checking in. Nanight. :)

All was well at clinic today. Phew!! Hell if it wasn’t I think I would just curl up and die. This shit is really getting to me, week after week after week of stress and worry, it aint much fun. I was told in the early days that we would find our “new normal” and I have to say that this is absolute bollocks. Quite the opposite in fact. The more I study this disease, the more horror we witness, the pain and anxiety Scott is forced to tolerate, the loss of too many children, the knowledge that at any time the cancer could resist treatment, I could go on and on. It all adds up to a heightened sense of panic. 19 months into treatment and I am more scared than at any point in the past. Several times a day I struggle to breathe, my chest races, speaking becomes difficult, and the more I try to control it the more I panic.

Scotts counts were high again (2520), but healthy. His platelets were the highest seen since diagnosis at 362. I raised the question of increasing chemo again and was told he is at the absolute maximum level of vincristine and no way would a doctor give him any more. So I have asked that a raise in methotrexate and 6mp be considered. 6mp is a truly wonderful leukemia drug, and as far as I have observed does not cause any adverse reaction in Scott. The nurse will be bringing this up next week at their weekly meeting. I know Scott is receiving the highest doses recommended, of all chemo drugs, under his protocol but as I understand it mtx and 6mp could be increased slightly at the discretion of the oncologist. I feel it unlikely that this will be approved yet cannot sit back and not push for something which could help keep any resistant cells at bay.

As for the rest of us. David’s dear mom had a successful surgery but is currently in intensive care. I am not qualified enough to go into detail and not sure she would even want me to, so out of respect (and fear of passing on the wrong information) I am keeping this brief. Maybe David will update on her tomorrow. Needless to say she is loved by us all and we just hope she will be back on her feet and feeling healthy and happy very soon. Get well Grandmomma!!

David still feels rotten and starts physiotherapy tomorrow. Oh how I wish I could be there to cheer him on and take lots of pictures! Derry is loving high school but is now also facing health issues which are freaking me out. I am unsure as to exactly what is going on but an x-ray of his spine (to examine his scoliosis) has shown some abnormalities which has led to a referral to an osteopath for further examination. He comes from a long line of tall people with back problems so Im hoping it is something from me or Callum, something he can live with, or something which can be fixed. Kevin is still in a heartbreaking situation which tears me up inside. He has improved, but it is a bad, ugly, predicament. My sister had to take an emergency flight from Mozambique to Johannesburg due to pelvic inflammatory disease (which nearly killed her 15 years ago) but she is doing well now thankfully.

You’ll be so pleased you reached the end of my gloomy (which really isnt all that depressing come to think of it, counts were good so for that I am very thankful indeed) post. Can’t say I blame you. Now off you go, crank up The Smiths and cheer up.

September is Childhood Cancer Awareness Month

USA Childhood Cancer Facts (from Candlelighters)

Each day, 46 children are diagnosed with cancer
One in 330 children will develop cancer by age 20!!!!!!!!! (I still find this statistic shocking)
Although cure rates are steadily increasing, 35% of children will die
Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
The overall incidence rate for childhood cancers has increased significantly by almost 33% during the period 1975 to 2001
On average a treatment for childhood cancer diagnosis is two years
Cancer treatment can cause serious side effects that may last a lifetime
Research on the emotional impact of childhood cancer finds that parents and siblings report even greater long-term emotional impacts than the diagnosed child