Wednesday, December 31, 2008
Here he is very close to the top of an 8ft tree...
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!
Tuesday, December 30, 2008
Monday, December 29, 2008
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.
Wednesday, December 24, 2008
Well I must go now, tatties to peel, poles to straighten, and such things. Merry Christmas dudes!
Friday, December 19, 2008
Sunday, December 14, 2008
Saturday, December 13, 2008
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.
Saturday, December 6, 2008
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 …
Friday, December 5, 2008
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
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
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
Sunday, November 16, 2008
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
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
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
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.
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
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
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.
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.
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
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.
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
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
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
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
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
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
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
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.
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
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
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.
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
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
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
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
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.
Sent from my BlackBerry Wireless Device
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
...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
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.
Another of my brilliant shots of Derry from behind - lol :)
Thursday, October 9, 2008
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
Another life, claimed and slain too soon, by cancer's greedy hands ...
Monday, October 6, 2008
Saturday, October 4, 2008
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
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
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
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
Thursday, September 25, 2008
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
Sunday, September 14, 2008
Thursday, September 11, 2008
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
An expensive gizmo, lets hope it provides answers and knowledge ...
Saturday, September 6, 2008
Thursday, September 4, 2008
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.