We made it home this afternoon and not before time. Scott has little patience (unlike myself, I was a crippled turtle in my previous life) and had spent much of the last day on the ward completely mute. So with the fever and a silent child my mind couldn't help but wander back to last year and his initial stroke symptoms.
His fever finally went down ... and down ... and down, until his temp was close to being hyperthermic at 95.4 degrees. It finally settled at 96.2 and we were allowed to leave. So, his temperature went down and his glucose level soared. The high end of normal for glucose is 99 and he reached 240. Again this is a repeat from last year when he was on TPN, this time there was no TPN only fluids with sugars and salts. A new order was placed for fluid with no sugar and it went down to 180. So needless to say discharge was under the strict instructions to avoid sugar as much as possible. We were warned last year that Scott will develop diabetes so I can only hope that his levels return to normal next week and we can delay, what seems to be inevitable, as long as possible.
His hemoglobin and platelets are not where I would like them to be. They are lower than they have been in many months and both numbers continued to drop the entire time we were there. This can occur when someone is fighting a viral infection but it is still incredibly worrying to see the very numbers which keep you sane (when they are good) throughout treatment, steadily decline. Transfusions weren't needed and again I hope to see an improvement next Thursday.
He was also sent home with a new drug to try. The drug is Neurontin and I have mentioned it before. It may help to alleviate some of his neuropathy pain and in turn relax his dependence on codeine and ativan. We were initially told he would have to take 9 pills daily, which Scott immediately declined, but were told this morning it was now available in liquid and he would only need to take a spoonful three times daily.
Its good to be home again with my boys, my kitty cats, my chair, my familiar and welcoming toilet, my fridge full of wholesomeness, my memory foam bed, my books, my dead washing machine, (which spookily enough was very much alive and kicking prior to our stay at st joes!!) and most importantly, my fever-free Skittles.
Thats all for now folks.
Thanks for checking in.

Today found a very bored Scott in-patient at St. Joe's. He simply gets bored REALLY fast in the hospital. It was afternoon before any of his Day 1 chemo got ordered, so by the time I stopped by after work, he was very upset and feeling very pukey due to a constant run of drugs being pumped into his IV line. He was made a bit happier due to delivery of the movie "runFatboyrun". But it was only a brief respite.

The good news is his temperature seems to have started behaving today. He was only beyond the borderline temp once after lunch today. They hinted at letting him come home tomorrow if that holds through the night. Stephanie just got me a message that his last reading was a perfect 98.6. So we wait with cautious optimism for release tomorrow. Hopefully whatever bug we've had round the house was zapped by several large syringes of antibiotic.

That's all for now, as I'm going to fall over in a minute.

Our streak ended today

I've never wrote about it on the blog, but we had a hell of a streak going (at least as it relates to a child on a leukemia protocol). The streak was we'd been over a year now without a hospital admission. That streak stopped this evening, as Scott developed a fever during the day. We think he's picked up a bug Derry has had for a couple of days. His temp got up to 101.1 and Doc Wynn ordered us in to the Hotel Tebbi (as Doc Tebbi says - "much more expensive than the Hilton and no where near as nice").

Stephanie and he are now in a PICU room, not because of Scott's condition, but because the normal kid's oncology floor is overstuffed. So overfull in fact, they have taken some parent beds out of the rooms and have 2 kids in some rooms there - something we've never seen before while in-patient.

Scott was a nervous wreck upon arriving at the hospital, and being in a different section. Especially when it came time for him to be accessed. A couple weeks back, he had a horrid nightmare about them missing his port during access, and the needle rupturing his main arteries. He said he was dreaming he was bleeding to death. So when a nurse he'd never seen came in to access him, I thought he may puke right there. He relaxed a little when she told him she actually had trained a couple of his fav nurses when they started. But not much. He was a trooper as always, and got through it and then truly relaxed a bit.

They have taken cultures from him, which won't have results for a couple days at least (if I remember right). His urine looked fine, but his bloodwork has us worried a bit. His ANC is up to 4000, and it should be near its lowest right now. He had a white blood count of 5100, which is a bit high, but could be so if he's carrying a bug of some kind.

Needless to say, we're worried sick.

We'll update further sometime tomorrow, as we get a bit more sorted.

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

I wanted to second Stephanie's "thank you" to Sherry for getting Scott and Stephanie around to clinic on Thursday. That was a major worry and huge relief! You are a true gem.

Things were that way as I was out of town for a few days. Officially for some annual work meetings we have in Atlanta. It was also timed so I could be in town up there for my mother's heart surgery. It was originally scheduled for Wednesday, but got postponed to Friday due to an inordinate amount of "emergency" cases piling into the hospital on Tuesday. Obviously that worked on my mom's nerves, which were at an end anyway.

So then Thursday evening rolls around - and yet another call for postponement. This time until next Wednesday morning. So now there are no nerves left with her, and one can hardly blame her.

I decided to not change my flight back yesterday, and flew back home as scheduled. Not the simplest of decisions. Now we wait for her surgery on Wednesday. I hope there are no more delays. She's been dealing with the stress of waiting for such a few months now actually, and just wants to proceed.

I've gotten to beyond the point of being shocked by all of the medical issues around us. It just seems there is an endless stream of problems for everyone in our circle. I'm weary of it. I think it has all just numbed me into a state of "lack of shock". We have all heard so much about so many around us, our brains have stopped processing from an emotional state. We're likely not very healthy in the mental perspective. But we weren't exactly the most sane folks before any of this anyway.

Scott is feeling better today, and it appears most of his cyclical pain has faded away. He seemed pretty upbeat most of the day, even though it was grey and rainy all day. Probably will be that way all weekend, thanks to Gustav. It was nice to see him chipper and happy when I got home last night. The kid has one of the biggest hearts I've ever seen and we keep hoping this ordeal won't change that part of him. Hopefully he'll be up for a short trip somewhere tomorrow.

Speaking of Gustav - seems it is headed just west of where Katrina hit 3 years ago. My oldest brother still lives on the coast of Mississippi, and I hope he heeds and gets out of the way.

My apologies for not updating the blog after clinic yesterday. I did write a post in the early hours of this morning, full of metaphors and imagery and shit, but it made me sound like a big pansy so I deleted it. All that poncing around with words just isn’t me.

On to the main man. His counts were exactly where they should be. The bone marrow left-shift shifted right. Hurray and hurrah and a tra-la-la-la-la.

I would like to say a big thank you to Sherry for helping us out yesterday. We are SO grateful.

Still in love with Donnie

Still homesick.
And to top it all off, it is bloody Thursday.

Teaching evolution in Florida

A breath of fresh air at last and worth taking the time to read ...

http://www.nytimes.com/2008/08/24/education/24evolution.html

We are in the midst of the squall and it sure aint pretty. Either the pain gets worse each cycle or, little by little, the pain medication is losing its punch. This morning he was begging us to go out and hunt him down some marijuana. And yeah, I do believe it would be the perfect drug for him at this time; however it is obviously out of the question. I did raise the subject of pain management at clinic on Thursday but no-one is willing to give him anything stronger. Apparently this is quite normal; doctors are very cautious and rarely will they prescribe strong opiates to children. It is getting so bad that I am now considering Neurontin. This is quite an effective drug used to treat neuropathy and is often used on patients who have undergone amputations but still have pain where the limb used to be. We were offered this several months ago but it would mean 9 pills daily, no good for a child who cannot swallow pills!

I am also a mess. A pathetic puddle on the floor in fact. The funky cells seen in his last blood work are preying on my mind. I am scouring the internet for more information but none of it really relates to our situation. These cells (poik, aniso, polychrom, metamyelo, atypical lymphocytes) should not be in the peripheral blood and the fact that they are is cause for concern. I have been reading about the ‘left shift’ but nowhere does it say “immature red and/or white cells in the peripheral blood are observed frequently in patients undergoing chemotherapy for cancers of the bone marrow” … I wish it would.

I haven’t mentioned Derry or his hockey lately but that’s because he stepped back from it after his dad died. He had no interest whatsoever. Well today he was back on the ice, trying out for the fall season. I was at home with Scott but according to David you would never know he hadn’t played in over 3 months. A comment from one of the assessors was overheard, “wow that kid sure is a freight train out there!” Yay. Derry is a freight train! He has further assessments tomorrow and hopefully in a couple of weeks we’ll know if he made it on to a team or not. Fingers crossed.

David is still suffering but at least we now know why. He has a cyst under the muscle in his shoulder!! Yikes. The doctor doesn’t want to try to remove it as it could be tricky so instead David has been ordered to attend physical therapy 3 times a week. Apparently the therapy can induce the cyst to shrink! David is so not chuffed. He just wants it gone.

Life don’t work like that though.

ALL and Stem Cell Transplant survivor, Maarten van der Weijden

No Evidence of Disease!!

snipped from the Telegraph:

Dutch swimmer Maarten van der Weijden skirted just inside the final red buoy to grab gold in the men's 10-kilometer open water race Thursday, completing a comeback after recovering from leukemia.
Van der Weijden won a three-way sprint in the inaugural event with a better-angled finish under a steady rain.
"I think the leukemia taught me to think step by step," Van der Weijden said. "When you're laying in the hospital bed and feeling so much pain and feeling so tired, you don't want to think about next week or next month, you're only thinking about the next hour.
"You just be patient. You lay in your bed and just wait. It's almost the same strategy I've used here, to stay in the pack, to be patient, and stay easy just waiting for your chance."

WOW!

Hurray, today is over. Well the worst bits anyway.
We were at clinic early to get Scotty checked over and make sure he is well enough for anesthesia and chemo. His counts were 1750, and platelets 232. Both are down from last week but I won’t stress. He also had atypical lymphocytes and a few other ‘abnormals” which I questioned nurse Bob and Dr. Tebbi about. Neither was concerned and I was told that in t-cell they see quite a lot of this, perhaps in pre-b it would be a red flag, but unless there were considerable numbers seen then I shouldn’t panic. I also took the opportunity to quiz Dr Tebbi about all his other blood work and he seemed happy with everything. He also said that chemo wouldn’t be increased as Scott was already receiving as large a dose as is recommended.
Before the spinal tap with chemo Scott had pentadamine. The doctors are keen to keep him on this as they believe he is tolerating it well and it protects well against pneumonia. So much for me thinking bactrim would be better and help with his high counts. We had a real bitch of a respitory nurse and she nearly got my fingernails straight through her eyeballs. She tried to insist that I leave the room when Scott had his treatment and told me she would also be leaving the room as pentadamine made her itch!! Daft cow. No, I will not leave Scott alone unless I am perfectly confident he is with someone with experience and with someone he trusts. She also should not leave the room. She should be monitoring him and making sure he is using the face mask correctly and breathing the medicine deep into his lungs. I told her that I was advised that a nurse should be there at all times and that I also would not be leaving the room. She again said we should both leave. I helped myself to a mask and sat down. She rattled on and on but in the end walked out of the room. Fortunately I have done this enough times now to know how it works. I was fizzing though.
Then we went to the day hospital and Scott had his spinal with chemo. Dr Tebbi did the procedure so that pleased me. He is awesome. His spinal fluid, which is drawn out, before chemo can be given, looked clear and disease free. However this is not fool-proof, leukemic cells could still be found in fluid which looks healthy. Obviously this would be devastating and hopefully this will not be the case.
Next, back to the clinic and his vincristine. By then Scott was a bit of a mess and needed a wheelchair. He really doesn’t do anesthetic well, it just seems to stress him out and make him a weepy and very unhappy little man. He also had pain in his back from the spinal. Anyhow, Bob gave him a shot of Tylenol and codeine and within half an hour he was smiling, laughing and drooling.
We are home now and he has had his first 4 steroid pills. 7 more to squeeze in before the end of the day, and ofcourse some 6mp (chemo) at bedtime.
That’s it for now, gotta go clean the house and stuff.
Oh and ps. Derry did finally make it to school. Tuesday was a hurricane day but he made it yesterday and today and so far, so good. Apparently the girls are hot, lunch is good and people don’t walk around with their pants around their knees.
Awesome.