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.
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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.
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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.