Scott & Sunny

Scott & Sunny

Wednesday, December 31, 2008

PS. Whilst we were out aqualungmyfriend trashed the tree. And whilst Derry could have dealt him a severe thrashing, given him his marching orders and saved our lovely tree he instead took pictures with his phone and sent them to all his friends.
Here he is very close to the top of an 8ft tree...

Am I tempting Lady Fate by having a countdown? Hmmm, I’m not much of a believer in anything let alone destiny, yet counting down the weeks still seems like a somewhat foolish thing to do.

However, all being well, today marks his 32nd round with 4 more to follow. Today is FIVE.

It wasn’t a great day to be sure, his counts were really weird with a white count and anc extremely high and a very large number of immature and wacky cells. This is usually the time in his cycle when his anc is at its lowest; instead it was the highest it has ever been. It’s a little freaky, especially with a bunch of immatures, the nurse did tell me though that he is probably fighting a bug of some kind or is about to. This could very well mean a fever in the coming days and a trip to hospital. Hopefully not because Scott doesn't have simple 'bugs', he has calamities.

Later his port didn’t want to work which freaked Scott out no end. Boy does he hate having a port, after almost 2 years of having it attached to him it still makes him feel queasy. After a lot of attempts and jiggling it finally worked.

Later we headed over to the day hospital for his lumbar puncture with chemo – this should be the final one!! – and we waited and we waited and we waited. The doctor and anesthetist were ready, we were ready, but some clod in the pharmacy was being tight in handing over the chemo. 2 hours later it arrived and the procedure was done. The spinal fluid will be checked for cancer in the next few days so we just gotta sit tight and hope its clean.

After the procedure we head back to the clinic for vincristine. Vincristine must always given in a separate room from the spinal tap and chemo because if a mix up occurs and vincristine is injected into the spine instead of methotrexate and Ara-C then it would be fatal. This has happened on occasion but most hospitals now insist on not allowing vincristine into the room where the spinal is to be carried out. Even still, I always check.

So we get back to clinic he has his chemo, gets de-accessed and we say our goodbyes. Just as we’re heading out the door his port starts to gush blood all down his chest!! Grrrr.

What a day!

And there’s a hand, my trusty fiere!
And gie's a hand o’ thine!
And we’ll tak a right gude-willy waught,
For auld lang syne.

Happy Hogmanay and may you all be blessed with good willy warts in the coming year.

Tuesday, December 30, 2008

Today Scott had an appointment with an Orthotist to be fitted for braces for his damaged feet. It seems that his tendons have shrunk in two places from the chemo and this is what is causing him so much pain. When he is asleep his feet fall into an unnatural, yet comfortable (for him) position and the problem is exacerbated. So, for the forseeable future he must wear these instruments of torture to bed ...

He will also be getting a wheelchair in the next few days to allow him to get out and about a little more without struggling to walk.
Cancer sucks.

Monday, December 29, 2008

It is over and I am left with that deflated, post-Christmas feeling. All the preparations, the excitement and magic, the quest for “stuff”, it’s all over for another year. I hate those first few days after Christmas and loathe Hogmanay and the New Year. We have had such a wonderful Christmas, I don’t want to be sucked away from it, to be spun around and find myself back in the Coliseum facing the cancer lions again. Yeah I know, too many similes/metaphors … whatever.
Christmas was great. It was even civilized as I was a monster and insisted on clean bodies and teeth prior to the shredding of presents beneath the tree.
Santa was generous, the boys were chuffed to bits, I was spoiled rotten by David, the Yorkshire Puddings were a success and ROCK BAND 2 IS PURE DEAD BRILLIANT!
Only 361 days until we can do it all again.

Jake/Ozzie/aqualungmyfriend ... he loved his first Christmas too...

Wednesday, December 24, 2008

Scott had clinic today and I was so incredibly pleased to see good results. Lots of platelets, hemoglobin and a nice fat anc. I couldn’t help but worry that today’s clinic visit would in some way cast a dark cloud over Christmas. Last year he had been neutropenic for several weeks and I was holding off doing a bone marrow check for relapse, the Christmas before was when he first showed signs of being sick. Christmas with a happy, hungry, non-lethargic Scott will be wonderful!
Well I must go now, tatties to peel, poles to straighten, and such things. Merry Christmas dudes!

Friday, December 19, 2008

I just checked my temp, trying to decide wether to give in to the cold/flu meds or not, and it is 101.9. I feel like someone stuck a pick axe through my spinal column, so forgive me, this is going to be brief.
Counts yesterday were good. Scott had a high anc from the steroids and a multitude of platelets. Now we just have to hope he doesnt catch the dreaded lurgy off me.

Merry Christmas.
LOL...and Nana, dont tell me you didnt at least stifle a chuckle....

Sunday, December 14, 2008

For my Mum, who admitted - in public! - to not celebrating Festivus ....

Saturday, December 13, 2008

Festivus for the rest of us.

Thursday saw the start of another round of Dr Tebbi’s special poison. His counts were pretty awful but decent enough for chemo. The effects are in full swing, and boy is it a bitch. Scott is now going though round 31 of 36 and as long as he stays on track he will have his final spinal tap with chemo either the day before New Years Day or a couple of days later.
I hate to sound like such a manic depressive but its getting hard to get excited that he is only 4 months from the end. So many children are relapsing around us and my confidence in treatment is now at an all time low. Not only that but the side effects Scott has experienced these last 2 years have been horrifying … stroke, fungal pneumonia and swelling of the brain, he has not ever been admitted for a simple fever or virus. Again, we wonder what freakishly uncommon, what horrifying and life-threatening issue, might he be up against next??!

So anyway, we are now trying to prepare for a perfect Christmas. Today we erected our festivus pole much to the delight of Ozzie/Jake/Jethro/Aqualung-myfriend, or whatever his name happens to be today.
(cat laughing at Sandies twisted sense of humour)
Sadly Scott isn’t really all that interested in Christmas, he just wants a plane ticket to Austria and an appointment at one of those euthanasia clinics. Hopefully he’ll be a little more in the spirit of things in a day or two! He’d better be, we have the “airing of grievances” to look forward to.

Saturday, December 6, 2008

Scott and I were out for our walk this evening when we came upon a strange and wizened old man. Half expecting him to produce from his coat pockets a purse containing five magic beans we were not in the least bit surprised to instead be offered a ginger kitten. It was holed up in his garage, bedraggled, unwanted and alone.
The young are engineered to be beautiful, endearing and to bring out the ‘mother’ in us all. I tried explaining this to Scott, “don’t look into his eyes Scott, don’t do it!” But it was too late, we were in love.
They say that cats find their owners so who am I to stand in the way of a long held feline tradition?
Meet cat with no name …

Derry loves him to bits, thinks he is "awesome and cool". David and our gaggle/herd/flock (what is the correct term for a group of cats?) of kitties are going to take a little time to be won over. Perhaps if he had a name it would be a start, he would be less of an outsider and part of 'us'.
So far we have ... Ozzy (after Ozzy), Sid (after Vicious) and Bob (after Scotts nurse). Fingers on buzzers and please cast your votes now.

Friday, December 5, 2008

Just a quick update on Scotty boy. Yesterday's bloodwork looked a lot better. All those sinister unclassifieds and immature cells were gone and replaced with a half-decent anc. His platelets took a huge dive and the hemoglobin was a little lower than I would have liked so Im still on heart attack stand-by but feel very, very relieved that things look more normal. I cant even begin to tell you how worried I have felt lately, its been one thing after another, anyhoo...

We have just returned from Give Kids the World in Orlando and had lots of fun and shopping but one of us will update on that in the next day or two.

And as it is almost Christmas, and as it is tradition (here and at "that other site") I will leave you with the best song ever written. No2 in the charts at Christmas when I was 18, beaten to the top spot by "two gays and a drum machine" (The Pet Shop Boys) according to Shane.

Wednesday, November 26, 2008

Clinic was a day early as apparently it's Thanksgiving tomorrow.
Counts were okay, not great by any stretch of the imagination, just okay. Hemoglobin and platelets looked good, but there were a whole bunch of immature white cells in the blood which have no right being there. Metamyelocytes, myelocytes and promyelocytes and 1% unclassified.

Friday, November 21, 2008

We went back to clinic again this morning for counts and were pleased to see just enough improvement for Scott to go ahead with chemo and steroids.
His bloodwork is weird though. Platelets are through the roof, the white count is very low and again there are immature cells/blasts (blasts can be harmless or they can be cancer) in the peripheral blood. The hemoglobin is the only cell line holding at normal. His monocytes are also very high; hopefully this is an indicator of marrow recovery.
So, we started back on the chemo and within hours the pain started. I refuse to have a repeat of last cycle’s cock-up, so should the pain become unbearable then I will ask to have Scott admitted for proper pain management. We now also have the added responsibility of monitoring his blood pressure and trying to find the correct balance of medicines. I have been told to expect a rise within the coming days now that we are back on steroids again. Lastly his glucose levels were high again so he’s on a strict low sugar diet.
I am so pissed off with cancer.

Wednesday, November 19, 2008

Due to logistics we took Scott to clinic a day early for bloodwork and hopefully to get him back on chemo. Well his anc was too low, so we wait, and we worry.

Sunday, November 16, 2008


After a week which was draining both mentally and emotionally, we had a bit of a 'calmer' weekend. But not without its own issues. Scott has responded to the blood pressure meds well - in fact, a bit TOO well. Saturday he commented he got dizzy a couple of times, so with the trusty HSA card in hand, I was off to Walgreen's to purchase a snazzy blood pressure machine. Checked it all out on myself, as I know what my bp usually is, then checked Scott. And his was low. Too low. Down around the 70/47 once. So another call to the clinic. Doc called back and told us to just stop one of Scott's meds. A glass of Coke and about 30 minutes lying down and his bp had come up to a more comfortable level.

He's much better today, but we're still sorting out getting the proper dosage of the one medicine to keep him at a more stable bp.

I think Stephanie would agree, this was one of the most exhausting weeks since Scott was diagnosed. The several issues we've faced just take something out of you which is'nt explained in words well. You feel like an over-matched boxer having about 6 different fights in one night. It brought a new meaning to the word "tired" for all of us. We hope there aren't anymore like this past week.

It ended this evening on a very "up" note. My company (Carter) and the MAW folks had planned a bit of a "sendoff" party for Scott at the Ice Forum where Derry plays hockey. Since Scott can't skate right now, they set us up for several rounds of Laser Tag, pizza, cake and I think about 30 cans of Silly String. Poor Scott was covered with the stuff upon arrival, but he loved every second of it. We'll put up more details about this happening tomorrow, but I just wanted to say before going to bed that we were all overwhelmed. Seeing so many faces I typically only see in my work environment there just to show support for Scott was an amazing feeling, and quite a humbling experience. The generosity of my co-workers towards Scott was amazing, and I think he's well set now for his Wish Trip. The Make-A-Wish folks gave us our trip package, and we can't wait to be on our way.

Our thanks to everyone involved. I can't explain our level of appreciation. I now have another explanation of why I've worked for my company for 20+ years, we have some very good people - not just at what we do in business - but as my Dad would say "they're just good people".

Friday, November 14, 2008

Its been a long day but believe it or not we were discharged at 6pm today.

I was up at 5am this morning as soon as Scott’s morning labs were taken, pacing up and down until the results were in. The anc fell again which is obviously a concern but no further “unclassifieds” were seen. Monocytes and platelets were up slightly, hemoglobin was the same as yesterday, 9.3. The doctors felt that the bone marrow may be about to recover and were content with Scott to be discharged and we’ll just have to see what Thursdays labs show.

The doctor’s only condition was that Scott eat something and be able to keep it down. His first attempt – 3 chips – resulted in failure. His second attempt – a small bowl of jelly and a few goldfish (not real ones) – was successful and at 6pm we got our marching orders.

So we are home and very nervous about all that has happened these last few days and what the coming days hold for Scott. He has so many seemingly unconnected issues going on and I was told today we may never know what exactly caused the brain edema and what is still causing the nausea, vomiting, aches and pains, lethargy, insomnia, etc etc. Like David said the exceptionally wonderful doctors (brain and kidney) think it could well be the high dose prednisone which led to high blood pressure which then caused the edema. As for the other issues, well until someone can come up with a better theory then I am sticking with neurontin. Today I told the oncologist that I will be stopping giving Scott this drug. It has been a complete waste of time and whilst it could be coincidental, we have had just about every listed side effect. I have also noticed that Scott has become emotionless, kind of vacant, and zombie-ish – this I absolutely believe to be from neurontin too. He’s really lost his mojo lately. Neurontin cannot be simply stopped as it could cause seizure so he will be gradually weaned off. As for the blood work, this could be viral, it could be recurrence but it could also have been caused by the compazine he received on Monday and Tuesday. This was the drug which caused Scott to have violent distonic reactions and was originally thought to be related to the vision loss. Whilst it is rare, compazine can interfere with the bone marrow and screw up the white count. But then again, Scott is becoming an expert on ‘rare’.

Its great to be home but its going to be a challenge. We still have a sick kid with no interest in food. He cannot survive on a small bowl of jelly every day and I now have even more medicines to try and get down him. If he cannot keep his blood pressure medicine down then we’ll have no alternative but to be admitted again.

Wish us luck!!

Thursday, November 13, 2008

A Mad World

Today has Scott reading better, and actually able to watch tv without it basically just annoying him. So that is a plus on the vision side of things. It does seem edema is the issue in his head and we are on the right path to remedy that aspect of things.

However, his ANC is dropping significantly. Down to 1100 - which any of the cancer-parent folks visiting here know isn't drastically low - but Scott's hasn't been that low in over a year now. And on top of that, the dreaded "unclassified" cells appeared on the sheet this morning. They are dreaded because they are just as the category says - no one knows what they are. They don't have recognizable form, shape or characteristics.

This of course has us in an elevated state of worry, if that is possible after the last few weeks. Scott is still very lethargic and has constant nausea. We probably are going to have him weened off neurontin, as it isn't part of his protocol and it simply did nothing to help with his neuropathic pain from vincristine - and he pukes it up in about 15 seconds most times lately. He also still has sore legs, which could be muscle atrophy, lingering neuropathic pain or something altogether different.

It is maddening to wait until bloodwork results get back in the morning to see if this is an anomaly or something that needs digging into deeper. Stephanie is a wreck with worry, I'm not much better. The stress of all of this uncertainty is cumulative over time, and concerns like this push you past a point one just doesn't like crossing as a parent.

I do want to say thanks to Sherry and Sara for stopping by and lifting Scott's spirits today. He does like such visits and digs all his stuff. Just so you know Sherry, he's not shot anyone - yet.

We also had two of the clinic nurses bring by yet another load of food goodies from Susan and Taylor. It seems every time we end up inpatient, the right stuff just appears from these amazing folks that started their unfortunate journey the exact same evening as us. Scott loves his pillow and blanket guys! Ironically we are in their "diagnosis" room now. I can remember Steve sitting out in the hall in a chair reading his book. That seems an eternity ago is some ways, and it's only been about 22 months.

Well, I'm rambling now and should get to bed. Tomorrow is another day, hopefully with some good news.

Wednesday, November 12, 2008

Wednesday Evening now

Today showed some improvement in Scott's vision. He can recognize people. Doc Fernandez had him reading header-sized type in one of the books in the room. His blood pressure seems stablized with the oral meds now.

He was let out of icu and back to the oncology ward this afternoon. He's still having his bp watched closely, and is in a very watched state. Sadly one of the reasons he was allowed to go back to onc today was a) the picu was packed, and b) two poor kids were brought to the hospital with gunshot wounds and need extreme critical care.

It doesn't worry us too badly to be out of icu, although Stephanie made sure a bp machine was left at Scott's bedside. But it also doesn't mean all is hunky-dorry (or however the hell ya spell that). Before we left, Doc Obzut came in an went over Scott's ordeal with him and us pretty thoroughly.

While his vision has improved, it is far from perfect. He can read large type on something in front of him. But Stephanie got a ballon with writing on it, and he said twice she had it upside down, and finally said "is it in Spanish?" This obviously concerned us, but we are both pleased with his improvement today.

He has not had the head turning issue today, but he's also not had Diflucan before I left the hospital a short time ago. It is not believed to be the problem, as Compazine (sp?) is the suspect on that front. We will see when he takes it later.

He did smile a couple of times today, and even had a bit of "Scott" humor back. He asked for some headphones for his laptop, Fanta and gummy bears. Weird I know, but asking for anything which he has to consume is a big step. After detailing his list of requests, he just looked at me and said "off", like dispatching a servant - which is vintage Brit-Scott without a doubt.

Stephanie is exhausted, but at least back on the onc ward she can get a shower in and has her own bed. Good thing, as I think she may have to begin to become "a bit foosty".

Some of you asked how Derry is holding up. Like a couple of weeks ago, we've made sure he's kept in school and try to make things as normal as possible for him. He's awaiting a World of Warcraft (gay!) release tonight, and likely will be on there within seconds of arriving home tomorrow. He knows the things going on with Scott, but Derry asks his questions in his own time, usually in an environment where he can escape very quickly. He knows Scott's problems are serious.

To sum things up - today saw improvement, but Scott is obviously not himself. We're hoping nothing more than keeping his bp down and more time will continue progress and improvement. At the same time, the fear of a not-seen blockage still lurks. It will do so for some time. This makes two issues with his brain during treatment, and few things are scarier.

We appreciate everyone checking in. We know we aren't social butterflies, and pretty much have become a "bubble family". But that is just the way we face this battle. It is the priority over all in our life.
Just an update on all the things going on with Scott. As Stephanie said, he vision was very messed up when he woke yesterday. At first it was thought to be another blockage/stroke. The mri almost certainly showed it was edema in his brain causing the problem.

He's been on blood pressure medicine since, and it seems to have shown some improvement. Dr. Fernandez, the neurologist who treated Scott last year for his stroke, has been a gem. He's in the room now giving Scott another inspection.

On top of this, there was what appears to be another dystonic reaction to Compazine. Scott literally had his head turning all the way to the right or left and backward, and his eyes would be all the way to that direction as well. It was like a violent muscle spasm, and I couldn't keep his head from moving out of fear of hurting him. It was painful, scary and horrifying to watch topped on knowing something isn't quite right in his brain at this time.

Not much rest last night, as he is constantly checked in icu (a very good thing). We don't know what today holds. Hopefully a regulated bp and a return to the normal oncology floor.

We are indeed very scared for Scott right now. It is a maddening series of tests/reactions/remedies and discussions amongst us, the nurses and what seemed like 8 different doctors of all specialties yesterday. He did have a kidney doc in, Dr Campos (another wonderful doc), whom said his kidneys look nice and strong and are working correctly (a big concern with the hi bp). His opinion is the mass amounts of prednisone Scott has to take has caused the hi bp. The prednisone can't be stopped, as it is a vital element of his leukemia protocol. Dr Campos was shocked at the dosage Scott has to take, and told us it is more than twice what a kidney transplant patient must endure.

Count yourself lucky if this all makes no sense. It is virtually impossible for someone not dealing with it first hand to really understand. I wished we didn't have to understand it. It's like walking a high-wire in a hurricane.

Tuesday, November 11, 2008

Scott woke this morning and couldnt see. Was also having facial spazms and couldnt control his face, neck and was also grinding teeth.
A stroke was suspected but later ruled out after a ct, MRI, MRA and MRV. He has edema/fluid build up in his brain. This was seen at the lower back part of his brain where sight is effected.
We are now in ICU under the phenomenal care of Dr Fernandez (brain doc). Dr Fernandez has been with us all day long and cancelled all other plans to see that Scott is taken care of.
He has just had an EEG which confirmed what was seen on earlier scans and also confirms that he is not having seizures.
Later we are scheduled for ultrasounds of pretty much all major organs.
The cause is unclear. Possibly related to the very high blood pressure. Now they are trying to find out the cause of the blood pressure issues.
He can talk and has full use of his body. He can even walk but cannot see where he is going.
We are scared out of our minds.

Monday, November 10, 2008 Stephanie said, the Noxafil was stopped. Compazine (sp?) is the drug which zoned Scott out.

Now we find Scott get blood pressure medication (dunno it it works or not, he just got it about 45 minutes ago and they will check bp at 1 hour). Diflucan replaces the Noxafil....but.....10 minutes after he took it, he developed a very scary eye-twitch reaction. It started right with the nurse in the room. All three of us looking at out poor kid wondering what the hell was going on. The nurse took off to get the charge nurse, and it had stopped just as quickly as it started.

I don't know if many folks have any dealing with anti-fungal drugs, but they are some very heavy-nitting, potent, nasty things.

Scott still having intense abdomen pain at times. It doesn't appear to be anything like appendix issues, but it is very hard to tell. The main thing right now and to get his bp down and hopefully get some sleep. The evening or morning may have an abdomen ct being done. I've been rather insistent on it, Stephanie is a bit unsure as it requires contrast (which we give a 99% chance of being puked up), docs want to see if bp comes down with meds first.

I just want him better and get some energy back for his upcoming trip. And, yes, it seems some complication comes at every turn.

Cancer, and its treatment, does indeed suck.
My heart is hurting with worry for my little Skittles. It really stinks seeing him so ill and lying in a hospital bed stoned out of his mind. At least for now his fear and pain have been lessened but soon the magic drug they gave him (cant remember the name of it) will wear off.
Like David said we hope the cause of all his problems (chronic insomnia, body pain, mild fever, nausea, vomiting, and now seriously high blood pressure) stem from the anti-fungal drug, Noxafil. The doctor isnt so convinced though but has withdrawn it and we now watch and wait. I desperately hope for improvement (well duh - thats a stupid thing to say isnt it!) and to see my baby bounce back.
HIs blood pressure is currently 153/103 so a drug will be given soon to try and bring it down to a safer number. Obviously this is simply a band-aid, only when we find the root of the problem will we be able to mend it.
Counts were okay, anc is 3380, but that damn bilruben is WAY high again.
I hate this shit.
So here we are, nice sunny November morning - and we're at St. Joe's. Scott's lack of sleep, nausea, lack of drinking and eating landed us at clinic.

Dehydration, high blood pressure and a need to do some fine tuning of drugs (and eliminate Noxafil, which we've determined to be the main suspect) has earned Scott an admission for at least tonight.

Right now he's getting fluid at a whopping rate of 1000/ml/hr. Hopefully getting hydrated again will make him feel much better. He's got a bp in the 145/100 range, which is too high and very much a concern.

We're still in clinic and will update a bit more when we get in a room on 2nd floor.
Sent from my BlackBerry Wireless Device

Friday, November 7, 2008

Its been a long and exhausting day and it's not over yet.
His temperature is getting very close to the dreaded number of 100.4 and even with all his aches and pains I have had to refuse tylenol w/codeine. It's too risky to take with a possible fever on the way as it will mask a high temperature and vital time could be lost. Not only that but after consulting with Dr Google I have learned that Neurontin can increase the effects from tylenol and from ativan. This could very well be why he is so groggy and lethargic. I would so very much like to throw the Neurontin out the bloody window but was told to keep going with the stuff. Besides which he cant go cold turkey as it could lead to seizures. So we plod on with it and ditch the pain meds, this did not please Scott one little bit.
He is still very drowsy and has been wanting peace and quiet. Basically he wants me to back off and leave him alone.
However, I have been in his face all day long. Pushing him to walk, to eat, to do anything but sleep. I am gonna feel so darn bad if he is fighting something and I have refused him the rest that perhaps he really does need.
I have tried massage pads and rubbing his legs, I have tried getting him to drink coke and eat chocolate in the hope it will geek him up, all sorts of stuff.
He just isnt himself at all.
Yesterday’s counts sucked in my opinion. His anc did come up following steroids but was the lowest post-steroid anc seen this year. I was assured by the nurse that this isn’t anything to be alarmed about as his bone-marrow is probably still messed up following the pneumonia. I wish that could calm me down but it doesn’t. His hemoglobin is holding and his platelets plummeted. However they were higher than normal last week so yesterday’s level was a more normal-for-Scott result.
The neuropathy is still present and is showing little sign of improving. His pain is intense and very distressing. Usually it is completely gone by now so this is very bizarre. I know that in some leukemia patients it does not go away during treatment and I simply cannot imagine Scott having to live with this pain day-in day-out for the next 5/6 months.
I have been convinced to put him back on Paxil as his depression is BAD, real bad. Dr Tebbi will monitor him for a few weeks and perhaps increase the dose if no significant improvement is seen.
Scott is also very sleepy. He shows no interest in anything but trying to get comfortable and go to sleep. Obviously this sets alarm bells ringing too. Just hoping that this is a combination between depression, pain and steroids.
I am also watching his temperature closely. It was slightly elevated yesterday and the bottom line is that he simply looks ill and feverish. Another inpatient visit would not surprise me

Wednesday, November 5, 2008

Good News - Bad News

First a bit of good news for Scott. I took him back to Doc Rosenberg, the pulmonary doctor, today. He listened to Scott and said his lungs sounded nice and clear, even to the point he didn't want to do another chest film. Scott will remain on one of the anti-fungal drugs until his oncs decide to stop it.

That's about it for the good stuff.

The bad news is Scott's joint pain has been unbelievable with this round of vincristine. Maybe because he had none for 5 weeks instead of 3, we just don't know. He has been miserable and basically completely depressed. It is not a lot of fun, and we're really hoping it wanes in the next day or so.

We also learned another child we know, Demetri, has relapsed and must start a new protocol. He's a boy we met for the first time at a hockey game, shortly after Scott was diagnosed. As his dad said, the treatment is supposed to make this not happen. It is every cancer parent's nightmare.

Our thoughts are also with Connor and his mom Tracey. Little Connor is fighting a major battle at this time. The kid has fought so much and complications just keep coming.

With all that said, we'll leave with a positive note. Angel Laura is off to the hospital tomorrow to deliver her new baby girl Ellie! Angel Laura has been wonderful (as have you Dave!) and we wish her a nice healthy new girl!
Sent from my BlackBerry Wireless Device

McCain gets pwned

in Warcraft too!

I like Obama, he's got one hell of a mess to start cleaning up, but hopefully he wont have voices in his head instructing him to invade New Zealand anytime soon.

As Churchill once said, "America will always do the right thing ... but only after exhausting all other options". LOL.

Thursday, October 30, 2008

David and I were wrecks this morning and dreading how screwed up counts could be today. So many variables to be taken into account and we just did not know what to expect. We have both said over and over again that all we want for our anniversary is beautiful blood work, and thankfully - YAY - that is what we got.
Anc was 2000, platelets 411 (highest since diagnosis), wbc 3.3 and hemoglobin was a staggering 12.6. This is incredible considering how it has been constantly falling for the last 6 weeks. It is not normal for pneumonia to have an effect on hgb, but it would seem to be the case in Scott's situation. Hopefully now he wont need anymore transfusions.
His chemistry was also good and whilst the bilirubin was a little elevated it was nothing like we have seen over the last few weeks. His nutrition levels had also recovered.
Chemo has been reduced to 100% as they dont want to overload his system whilst still recovering from an infection.
We now wait with baited breath to see whether the neurontin will take effect this cycle. I hope so. Vincristine week with no pain would be bliss.
So thats it. A good blood/chemo day. Phew. :)
Oh yeah and it's anniversary! Will write something sappy about that later.

Tuesday, October 28, 2008

Great blog:
Scott is doing okay thankfully. We are very pleased that he has managed at home, and so far, has not had to be re-admitted.
The antibiotics and antifungals are wreaking havoc with his stomach but we are getting them down and hopefully they are doing their job in killing the pneumonia. Due to this he has been housebound since coming home which is a shame because he could really do with a little fresh air and exercise. We also have no idea how his anc is at this point. It dropped every day that he was inpatient and when we left it was at 1100. Add 6mp (chemo) to a falling anc and it could well have bottomed out. Having said that, he could be tolerating the chemo and recovering. We may be pleasantly surprised come Thursday. We have no way of knowing which way it is going and we are taking no chances. The last thing he needs is another infection, hospital stay or a worsening of his pneumonia.
Scott is managing to eat again, not a lot, but he’s doing pretty darn well all things considered. We’re also closely monitoring his temperature and fluid intake. He is taking ativan and zofram for his nausea and probiotics to try and stem his other ‘problem’. We are keeping an eye on his color and energy and watching for any sign of jaundice and so far, he looks great. He is breathing okay and doing his lung exercises with his flutter valve but still, no coughing!!! Weird.
All in all he is happy. He is home, he has his cat, and he has a new video game. He also has a house full of his peeps running around at his beck and call.
I’ll update again on Thursday. I am desperately, desperately hoping for good blood work and to be able to start his chemo and steroids. Thursday is also our 4th wedding anniversary so if all goes well at clinic then maybe we can relax and kick it up a notch later in the day. That’d be nice!

Friday, October 24, 2008

I think we may be getting out of here later today. Im not too sure I am happy with this but Scott sure is. His o2 is holding close to 100% and his lungs sound better but the pneumonia is still present but under control. We will be released with lots of meds, 2 anti fungals and oodles of advice on how to continue treating him at home. Obviously the doctors are pleased with his progress and content to discharge him, I am just nervous at going home without the o2 and heart monitor.
His bloodwork this morning has shown signs of malnutrition which is understandable given that he hasnt eaten for 8 or 9 days now. He will recieve an infusion of protein prior to discharge and we'll just have to do our best over the coming days to try and build him up again. However I have a long, long list of foods he cannot have for the next 3 weeks. Foods which contain Tyramine (meat, fish, vegetables, over-ripe fruit, chocolate, peanuts, coke, cheese and many other things) are all out for the time being as they can interfere with the antifungals and lead to a "hypertensive crisis that may be life threatening".
He hasnt had a blood transfusion in 3 days and so far the hgb is holding around 10. This is still low for Scott but at least, for now, it is stable. I would imagine we will have to come back in for a blood test on Monday to see how he copes over the weekend.
It's great to be going home - we miss our kitties so much - but it's a little scary.
Before I sign off I just want to say thank you to my mum and sister for travelling thousands of miles to come and look after us. I am so happy to be going home to a clean house, happy cats and food in the fridge! :) Also thank you to my awesome friend and 'angel' Susan. Whenever we have a crisis, "poof" she is there at our side. Thank you to Sarah for the games, books and chocolates and for being so damn lovely. Thanks too to our pet therapists and all the kind volunteers who have kept Scott's spirits up over the last 9 days.
Over and out.

Wednesday, October 22, 2008

We finally did get a growth on some of Scott's lab slides - candida. Yup, yeast. While the culture has grown this, it is not certain this was the primary and sole cause of Scott's pneumonia. Be that as it may, candida is a fungal infection. It is a very good thing Scott has had Zyvox and fluconazole since Saturday morning. Today the docs added omnicef to his battery of drugs, and stopped the Bactrim.

Scott was doing better today, and finally ate a whopping 2 saltines. He did walk a few laps this evening (under great protest) and hasn't had O2 since he took off the mask for his nurse last night. He still is breathing shallow, and has an elevated heartrate, but he is improving. He probably wouldn't agree with that, as his nausea seems pretty consistent throughout the day.

So, a fungal pneumonia it is. We just want it pounded further by the proper drugs and to get Scott home. That said, we don't want him home too quickly either. The last thing we want is for a fungal pneumonia to not be fully eliminated and have it return.

Off to bed now. We'll be grabbing what should be a very travel-weary Lorna (Stephanie's sister) at the airport just about lunch tomorrow. She should be full of energy, since she took off from Johannesburg about lunchtime today. More tomorrow.

EDIT: I did want to add one thing. Scott got visited by Dumbo, a treatment dog this evening. Now getting visits from treatment dogs isn't a rare thing. Scott sees the likes of Benji and Sunny on a regular basis. They are large dogs. Most the treatment dogs are labs or retrievers of some sort. But Dumbo is different, and the last thing I would ever expect a treatment dog to be - Dumbo is a chiuaua. A tiny little girl. And as friendly as any treatment dog we've ever seen. Anyone knowing dogs realizes these dogs tend to like their owner and growl and bite everything and everyone else in their path. Not Dumbo. She just sits, gets pet and licks everyone in sight. She is quite a sight, and I wished I had a picture to post.

Tuesday, October 21, 2008

Just a quick update here tonight.

First off - Christine (Steph's mum) got here right on schedule, so breathe easy Eric. Just wanted to let you know she arrived all in one piece when you read this in the morning. We got her all tucked up for the night already. We did get by the hospital on the way home, so she's had a visit with Scott.

Scott this evening looked a bit better to my non-doctor eyes. He was chuffed to see his Nana walk in the room. Easily the biggest smile he's had on his face since admission last week. She also came with Oscar, the Harrod's 2008 Christmas bear in tow, which is now perched right at the foot of his bed keeping a watchful eye on Scott. I can tell he's better, as he made a comment after his nurse left the room. He said "she's purty" (trying to sound like me I guess). When Stephanie and Nana left the room for a bit, I told him I'd bet he wouldn't say it to her face. He instantly said "how much".

A few moments later, his nurse came back in and I lost 5 bucks, and his nurse replied "I see you're getting better!" He actually answered all her questions with words instead of nods. Removed the O2 mask at her request and kept talking to me for a few more minutes. He was still without the mask when I left and holding up a 94 on the meter, so that is a good sign.

Hopefully the night is at least a bit more restful for both of them.
Yet another morning of continuous drugs, oncology doctors, pulmonary doctors and respiratory therapists. And all the while, Scott continued to puke.
Thankfully they all agree that he is looking better and improving daily. It is still a mystery as to the type of pneumonia he has. Bacterial has been pretty much ruled out, as has PCP and Legionnaires. As yet nothing has grown on the fungal cultures but because he had been given anti fungals prior to the cultures being taken, the results could come back as a false negative. Fungals can take up to 5 days to grow and we are almost at the 3 day mark.
I was starting to believe that this was all viral, and hoping that is was, but the lung doctor just told me that his early symptoms (the need for oxygen and very high fevers) led him to believe the pneumonia was fungal.
So the plan is to stay on regular high doses of anti-fungals, antibiotics and diuretics (to stop fluid build up) and to keep on with respiratory therapy. This morning 3 IV medicines were approved for his sickness, so hopefully we'll see some relief from this soon.
His hemoglobin is also still a mystery. The Epstein-Barr results are due anytime now and if these are negative he will have further tests to see if he has a genetic condition that can cause rapid red blood cell death. That cant do this right now as he has had two transfusions in the last few days and this will obviously screw up the test.
Thats it for now.

Monday, October 20, 2008


Not too much change today overall. Today's xray showed a bit clearer than Saturday's, so that's a positive. Scott is still extremely exhausted, as he has rested very little in 5 days. He battled fever during the night again, but not quite as high as the first few nights. No cooling blanket has been used since he moved back over from ICU. A constant barrage of different medicines continue. He's having nausea because of all the drugs, yet has little in his stomach. So when he does get sick, it is a heartbreaking sight. His chest hurts, and he's still working on about 2 litres of O2. He did walk a couple of laps around the 2nd floor with us this evening, but even then had to stop a few times to make those couple of laps. His breathing is still quite rapid and shallow, and we almost let out a cheer if his heart rate gets down to 100-110. It constantly races to compensate for the lack of work his lungs are doing, plus as a result of the many antibiotics.

Doc Rosenberg, the pulmonary doc, has been quite good with Scott. He stopped by today with a few of his med students to check Scott over. He's also ok'd a new type of respiratory therapy which was started last night by a wonderful young doctor from Shands, whom had Scott actually smiling at 4 in the morning. The treatment is continuing tonight with, what Stephanie said, is a "large man which Scott seems to like". These treatments come each 4 hours round the clock. We're hoping for good results from them. Scott seems happier during this stay with male doctors, nurses and techs for some reason.

As we said already, this is going to be a slow process of recovery. The sheer amounts of drugs he's having administered would scare anyone. How do they all truly react with each other? I doubt any one person truly knows. But they are blasting him with drugs to attack any of the possible nasty fungal and bacterial pneumonias. If it ends up being a viral type, we may never know specifically which virus started all of this. That is a scary thought all on its own with Scott's situation.

If you saw him 10 days ago, you'd have never dreamed we'd have been dealing with the last 5 days. It rattles your system and reminds you to never drop your guard. It is next to impossible to explain to people what this is like for Scott. It is simply beyond belief what he has to endure on just his T-cell treatment protocal. What he's enduring right now - I simply do not have words to describe.

Dez is sacked out. I'm going. Sadly another of what is likely going to be many more nights of beeping pumps and sensors, breathing treatments, fever, nausea and lack of sleep for our little guy and Stephanie.

Sunday, October 19, 2008

Actually scratch that post below. Scott has pneumonia, but not that type. Someone read a report wrong. He doesn not in fact have that type of pneumonia. There was a mistake in reading the lab report earlier today. Obviously this was quite disturbing, and I believe Stephanie made it quite clear how disturbing and unacceptable the mistake was. I also understand doctors are humans and all of this is nothing close to a perfect science - but a mistakenly read report by someone we're trusting with our child's life is certainly not going unchecked quietly.

That's enough about that.

Scott is back in the same room on the oncology floor. He says his chest is very sore, and his breathing is shallow. The short breaths keep his heart racing along in the 120-130 range. He was been turned down to 3 litres of O2 right now. At one time he did say he felt better than a couple of days ago, but later change his mind when I ask, and said he wasn't sure. Scott is on a massive combination of drugs right now. A quite frightening list. I can recall them all off the top of my head. He basically feels completely miserable, but is happy to be back in one of the "normal" rooms. The ICU rooms are quite scary to him, and his anxiety gets high over there.

It's a lot more comfortable for Stephanie as well, since there are no 2nd beds in the ICU, just a recliner. No nice private bathroom or shower either. She lives at the hospital, and there has been a very small amount of time that she's not been there at any time during any of Scott's stays. This tends to make our house revert to a "guy house" with just Derry and I here. The smell of Clorox leaves after a couple of days, and some other smell seems to replace it. We make due best we can. Stephanie's mum will be over Tuesday night, and she'll help whip us back into shape.

So to sum up the whirlwind of the last couple of days - it is a very serious situation. Scott has to fight off what is still an unknown source of pneumonia. But we do know it is not PCP - which he is specifically medicated to prevent on a regular basis. That is about the most positive spin I can muster right now. It is very hard to watch how much he's struggling to breathe and knowing just how many drugs are being pumped into him.
Cautious good news this morning. The lab report has come back with bacterial pneumonia - mycoplasma pneumonia to be specific. Better known as walking pneumonia. The lab report showed it appears Scott had never been exposed to this bacteria, as his system is producing massive amounts of the antibodies to fight it (a good thing). So far, no fungal or viral types have shown up in the lab. That is about as good of news as we could expect right now. Scott was on 20 litres of oxygen yesterday, it's been lowered to 5 litres this morning. He's only allowed clear fluids right now. No food still.

Another xray this morning looked basically the same as yesterday's. No improvement (which wasn't really expected only a day into heavy duty antibiotic regimen), but also no further progression.

This IS good news, but Scott is still extremely miserable and very sick. He will still have a lengthy stay full of misery, but this news even put the doctors a bit more at ease. Yesterday, this just wasn't the case. Don't read this wrong, this is still a very serious issue which we must face.

Scott is going to be moved out of ICU and back onto the oncology floor sometime today. He can get the necessary oxygen and all of his meds there, plus he can move around a lot more, as he'll be able to leave the room with a mask on and walk laps in the oh-so-familiar hallways of the 2nd floor. The rooms there are exponentially less scary to Scott, he did not want to get back in the bed all night last night. I'm glad he's that stubborn and refused. He'll also have his games and tv to keep his mind occupied during what is going to be a pretty lengthy stay at St. Joe's.

Saturday, October 18, 2008

This has been a very long day. I'll try to sum up things, but be forewarned I'll likely ramble a bit here. I'm probably also missing some things about today, but it is all a bit of a blur at the moment.

Scott's fever just would not abate through the night again, even with loads of drugs. It just keeps coming back. He also has been breathing shallow, as he tends to do so to fight from coughing. This prompted one of the nurses to check the O2 level in his blood. It was down below 90, so she summoned the doctor. After getting checked over, a follow up xray was ordered. The results were not good. The "infiltrates" which showed in his lungs on Wednesday have shown progression - they are more in his lungs than on Wednesday. This confirms has developed pneumonia, and it was getting worse.

This resulted in Scott being transferred to ICU in order to perform a bronchoscopy (sp?). He was sedated with a local, and the procedure was performed. This is the scope which is ran into his lungs with a tiny camera and a means to take a sample of what is in there. The results have been ordered on an expedited manner, but we aren't sure when they will actually be received.

Stephanie was made to leave the room, and this distressed Scott greatly, as he was awake when they made her leave. Afterward, we went back in to a a struggling kid. He was fighting coughing, half under and it was heartbreaking.

He is now on a laundry list of medications. Ones for viral pneumonia. One for fungal pneumonia and I honestly don't know what else. Seems he's getting a different drug every 30 minutes. It is all very hard to keep up with, and we probably don't want to know what they all are anyway. Scott is being a gamer tonight, but is very scared. He's been sitting in the chair in the room for several hours. He is now refusing the bed. We believe he is scared if he lies down, he won't get up. Sitting up is always better than lying flat, so he's conscious of that fact.

We did ask him if he remembered the procedure, and thankfully he did not. The doctors in the room said he told them about his brother, hockey and video games. So whatever they used to zone him out worked thankfully.

This is going to be a long hospital stay. Likely at least a couple of weeks we've been warned. Scotty remains in ICU tonight to be monitored closely and get all the prescribed drugs right on schedule.

We remained worried sick and scared.

Friday, October 17, 2008

Scott had another dreadful night, fighting a temp in the 104 range. It spiked up around 1 in the morning, and nothing really helped it. He and Stephanie were basically awake all night again. He's been laying on the cooling mat for a day now. The doc stopped by this morning and they are still rather certain he's dealing with mono. If that is in fact the precise virus he's fighting, it will likely mean a number of blood transfusions over time to keep his hemoglobin up. It bounced up nicely last night after the transfusion (up from 7.6 to 10.3), which is expected with the blood. The next round of blood test (sometime during the night tonight) should give us an idea of how quickly it may be changing.

He's currently jacked up on Ativan and Tylenol w/Codeine, and still has a temp around 102. He just turned the tv off and has lowered his bed flat, so hopefully he'll get into a decent doze/sleep for a couple or few hours. Being awake all night, along with the vomiting and all the other things going wrong has exhausted the poor kid.

He is a very sick little fella right now.

We will update here as things change. If we're not updating, that means things are basically the same as right now. Posting every few hours about how sick our little guy is seems a bit weird right now.

I wanted to note to Angel Dave in Maine - the velvet door tag couldn't have showed up at a better time! Scott sat off right away and colored it in very nicely and placed it on his hospital room door. And Angel Laura - Scott hasn't been eating much of anything, but went to work on the snake right away as well. We just hope you folks know how such seemingly small things help. Thank you.

Thursday, October 16, 2008

Last post of the evening - Scott is finally getting his blood transfusion. With the help of Motrin (which isn't easily approved in someone like Scott's situation) and the water pad, his temp got down enough to go ahead with transfusion.

Don't really know what the night may have in store. Hopefully his temp stays down. He is still on the cooling pad for now, and the room is about 60 degrees it seems.

I'll update in morning sometime.
Sent from my BlackBerry Wireless Device

As Steph said earlier, Scott has a number of things thrown out of whack and just raging with his body.

The latest is the blood transfusion. Blood was ordered and about to get infused, but a temp check showed 102.6 - too hig for a blood trasnfusion. It had just been 101.5 literally 5 minutes prior - and this is just an hour after having Tylenol/Codeine. So all his covers have been removed and Scott lies there with a chill due to fever but needs his body cooled. Its not nice.

His x-ray showed "infiltrates" in his chest. A viral pane has been done, but those results take at least 3 days.

This gets very complicated and confusing.

So this is going to be a rough, scary, uncertain few days until what is happening is pinpointed. Needless to say, Scott is miserable and a mental wreck, as are we.

More later.
Sent from my BlackBerry Wireless Device

Scott isnt very well. Last night his temp was at 104.4 but thankfully dropped a little after tylenol and being wrapped up in a cooling/torture blanket and damp towels. He has stuff in his lungs and the x-ray cannot rule out pneumonia, he is jaundiced and his hemoglobin is lower than it has been since this all started. Today he will get a blood transfusion and antibiotics and a viral panel to see if he has mono or something similar which could be eating up his red blood cells. He has blood and bacteria in his pee and we are waiting to see if cultures grow.
I had a bit of a hissy fit this morning and made it clear I needed to see the main man, Dr Tebbi. Thankfully he was around and came to see us and made me feel so much better. Whilst this is incredibly scary he did manage to reassure me that he did not see relapse only a viral infection. Whatever the root cause is it is causing chaos within Scott, in his lungs, in his blood and in his liver.
Scott is asleep right now, exhausted from last night and also because of his hemoglobin.
Its heartbreaking and scary.

Wednesday, October 15, 2008

Another fever

I'll keep this short just to update those across the pond as you awake on what will be Thursday morning....

...late this morning Scott pass the dreaded fever threshold of 100.5 F (38 C) again, so we were off to St. Joe's. After a verified reading in the clinic, the hope of us just having a crap thermometer which was wrong was washed away.

Another fever. Scott signed in to a room on the ped oncology floor.

His hacking cough comes in fits, which is very worrying to us. Doc Obzut listened to his lungs thoroughly, and heard nothing disturbing. But something is causing the cough. He says he cough because his chest tingles right behind his breast bone area. She also checked all around his abdomen and head and neck lymphnodes. Nothing seemed out of the ordinary.

Even before we left for hospital, Stephanie and I were set on requesting a chest x-ray at the minimum. Luckily, Doc O thought exactly the same before I even mentioned it to her. He didn't get down for it til late in the afternoon, and we haven't heard anything back from anyone.

So Stephanie and Scott are already tucked in bed at St. Joe's. Derry just gone to bed here. I'm just sitting reading through old blood tests and "researching". Don't really know for what and will probably give myself nightmares, but such is the life in this world.

I'll update tomorrow as soon as we hear anything.

Sunday, October 12, 2008

"Charlotte sometimes dreams a wall around herself"

You know, for someone who doesn’t go in for all that mystical foo-foo I am ridiculously hesitant in putting a hex on us by telling you this weekend was pretty good.
Scott came so close to ending up back in the big house on Friday due to high temperatures and all looked gloomy for a while. But then it dropped like a stone, repeating last week’s incident. It is worrying. Why his temperature is fluctuating like this I don’t know. Anyhow, I forced myself to lay off the thermometer this weekend, well cut back at least, and he seems stable again. Scott is also a little pale and yellow-ish although not pure white and whilst he did complain of feeling tired from time to time he also found the energy to do more than he has done in quite a while. He has also been having cramps in his hands and feet and again I’m not sure why. It could be biological but with all the drugs he is taking it could also be a side effect. And one more thing, he is coughing like a crack-smoking coal miner. Not good. So there are a few things going on and David and I, and Scott too, are nervous and jittery and can only hope that none of the above are serious in nature.
But like I was saying we did manage to have a decent weekend. Probably very boring compared to just about everyone else’s but good for us. It was almost normal. We went for a bike ride like the ordinary people do. David and Scott went out on Saturday night, just like regular folks, to see a hockey game. We watched a movie all the way through and everyone was civil and didn’t fight or throw up. We ordered pizza and the pizza man didn’t get lost and the pizza was really good for a change. We pretended we were just like all the other normal families without cancer and went to support Derry and his team and I didn’t take my bag full of emergency medicines. But unlike ordinary games they won so that kind of ruined the streak but oh well.
Considering we are all manic depressives, to one degree or another, and considering how little it takes to throw any one of us into complete hysteria, and considering how freaking freaked out with stress we are, I think we did rather well.

Pre-game pow-wow, they look like they-re praying but they arent, I dont think so anyway..

Looking hunkerific in hockey pants ...

Another bum shot. If you're wondering why there are never any pictures of him actually moving its because he's too fast and becomes but a blur when on ice! its true ...

Another of my brilliant shots of Derry from behind - lol :)


Thursday, October 9, 2008

Week 83

I'll keep this short and sweet as I am not in the mood for updating but if I dont the phone will be ringing first thing in the morning. Blogging about your child's cancer ups and downs really isnt much fun and besides which how many ways are there to discuss blood work?
His anc was fine at over 6000 (boosted by steroids).
Wbc - 7.0
Hgb - low and I dont want to talk about it
Platelets - 230, a slight increase from Saturday when we were discharged, phew!
Bilibloodyrubin - Yes, good old bilirubin rears its ugly head again and is elevated at 2.5

Tuesday, October 7, 2008

Redemption Song

Scott has been jammin' along with the oh so very incredible Bob Marley. He seems to 'get' the whole rasta thing, even more so when he's popped an Ativan or 12 (only joking Doctor Tebbi)! So yeah, he's been getting down with it today, getting his rasta on, and coping incredibly well with the neuropathy.

Another life, claimed and slain too soon, by cancer's greedy hands ...

Monday, October 6, 2008

Zoltar speaks

You know, I read somewhere, that in America the equivalent of 2 classrooms full of children are diagnosed with cancer, every single day. The great Mother Nature casts her eyes, she points and declares, "I'll take that one and that one today". The following day, and the day after that, she hones in on child after child, classroom after classroom.

It is still hard to believe that my little man, at the age of ten, was diagnosed with cancer. I had fears of him being in the wrong place at the wrong time as a car sped down the street. Or maybe later in his years being arrested with a wee baggie of dope in his pocket and crossing the very unforgiving US cops. But not cancer.

Here he is shortly before diagnosis with Zoltar from the movie 'Big". I am not superstitious in any which way shape or form, but the fortune Scott received was eerie. We shrugged it off and walked away. Still, it is hard to look at this photograph and not feel a cold shiver run down my spine.

Saturday, October 4, 2008

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.

Thursday, October 2, 2008

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.

Wednesday, October 1, 2008

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.

Tuesday, September 30, 2008

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.

Saturday, September 27, 2008

With the exception of Oasis

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

Thursday, September 25, 2008

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).

Thursday, September 18, 2008

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.

Sunday, September 14, 2008

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.

Thursday, September 11, 2008

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.

Wednesday, September 10, 2008

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 ...

Saturday, September 6, 2008

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. :)

Thursday, September 4, 2008

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.