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.

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.

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.
Dammit!

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.

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.

Weekend

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".

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!!

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 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.

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.

Grrrrr.....as 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

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

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.

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.

Great blog: http://margaretandhelen.wordpress.com/