Not much of a neutrophil count but enough to spring us from the hospital. We have to be very careful while Hayden is vulnerable to infection, but at least we're home. One casualty along the way though...we lost Sneaky. That's his stuffed leopard that gave him comfort through some tough times in the last 9 months. Hopefully he'll turn up at the hospital.
All in all, he's doing great. Tonight, as I drag my weary butt to bed, I can't help but think about all the parents sleeping (or not) on the make-shift beds at the Childrens Hospital. It may sound weird but we've got it good...at least compared to the many families we know who travel 3 hours each way for treatments or spend weeks at a time in the hospital. It makes our 10-day stint seems minor. Just goes to show you...what?...not sure...but something? mreh.
G'night.
Sunday, August 30, 2009
Saturday, August 29, 2009
Still waiting...
Yep...neutrophils would be nice, right about now. Looks like we'll be a few more days in the hospital.
Friday, August 28, 2009
Still waiting…
The fevers have subsided but, before we can go home, Hayden needs some neutrophils. Not sure yet what today’s count is but we do know that his overall white blood cell count continues to rise – that’s a good sign. His gums, which were very red and inflamed, look better now too.
Now that Hayden’s feeling better, he’s finding new ways to entertain himself. The fart machine, for example, continues to bring much joy. I wish I could describe the looks on the nurses’ faces when Hayden walked laps around the ward and pretended to drop bombs – then blamed me (he had the remote)! People even poked their heads out of patient rooms to see who was shattering the hospital monotony with unabashed gas (my favourite is the chemo fart). It’s stupid humour, to be sure, but we roared.
Other highlights include: a visit from former Jets players – including Bobby Hull; a spanky new Wii set-up; a new jewelry-making business, a personal magic show; and visits from aunts, uncles, cousins, and grandparents.
Now that Hayden’s feeling better, he’s finding new ways to entertain himself. The fart machine, for example, continues to bring much joy. I wish I could describe the looks on the nurses’ faces when Hayden walked laps around the ward and pretended to drop bombs – then blamed me (he had the remote)! People even poked their heads out of patient rooms to see who was shattering the hospital monotony with unabashed gas (my favourite is the chemo fart). It’s stupid humour, to be sure, but we roared.
Other highlights include: a visit from former Jets players – including Bobby Hull; a spanky new Wii set-up; a new jewelry-making business, a personal magic show; and visits from aunts, uncles, cousins, and grandparents.
Tuesday, August 25, 2009
Things are looking up
Most things are on the way up, including Hayden's spirits and his overall white blood cell count...surely his neutrophils will follow. His temp, on the other hand, is not up - and that's good. The last spike was yesterday evening. He was fine all through the night and so far today. Seeing as all of the blood cultures are coming back negative for infection, we're fairly certain that once his neutrophils return the fevers and swollen gums will subside (btw - he doesn't have thrush).
The olanzapine seems to be helping his appetite and nausea. He has way fewer bouts and is requesting new foods (thanks to Grandma & Grandpa for the 'emergency' chicken noodle soup delivery).
He's keeping busy with some exciting new projects. Details to follow...
The olanzapine seems to be helping his appetite and nausea. He has way fewer bouts and is requesting new foods (thanks to Grandma & Grandpa for the 'emergency' chicken noodle soup delivery).
He's keeping busy with some exciting new projects. Details to follow...
Sunday, August 23, 2009
Understatements....way under
Understatement #1 - Hayden hates being in the hospital...even great nurses and doctors can't change that.
Understatement #2 - Hayden is all out of suck-it-up...just a little grumpy (yikes!).
Understatement #3 - He has major food/barthing issues...he gets a bit anxious when he thinks about food.
Actually, the anxiety isn't just caused by food - oral meds, drinks, anything can get him pretty worked up. He hasn't barthed in days (perhaps many of them, I don't remember) but he says he feels nauseous at the thought of putting anything back. So we're breaking out the olanzapine again. It's a double-duty drug that alleviates anxiety and increases appetite. Dr. Eisenstat says that it's typically used with teenagers who are fighting cancer but Hayden is quite mature and very aware of what's going on. He's the second doctor to say that...sigh...
Understatement # 4 - Cancer sucks...that's a 5-star understatement.
Understatement #2 - Hayden is all out of suck-it-up...just a little grumpy (yikes!).
Understatement #3 - He has major food/barthing issues...he gets a bit anxious when he thinks about food.
Actually, the anxiety isn't just caused by food - oral meds, drinks, anything can get him pretty worked up. He hasn't barthed in days (perhaps many of them, I don't remember) but he says he feels nauseous at the thought of putting anything back. So we're breaking out the olanzapine again. It's a double-duty drug that alleviates anxiety and increases appetite. Dr. Eisenstat says that it's typically used with teenagers who are fighting cancer but Hayden is quite mature and very aware of what's going on. He's the second doctor to say that...sigh...
Understatement # 4 - Cancer sucks...that's a 5-star understatement.
Friday, August 21, 2009
The DI Hangover
Unfortunately, the effects of the stupidly-intense Delayed Intensification (DI) phase continue to linger. Tuesday’s blood test revealed that Hayden’s neutrophil count bottomed out, and his platelets and hemoglobin were low too. The last time this happened, he spiked a fever and we ended up back in the hospital. And here we go again…
Hayden’s temperature started creeping up last night. At about 5 a.m., he came to tell us that he hurt all over – his temp was 38. We called the doctor and he recommended that, seeing as Fridays are clinic days, we should let him sleep and arrive early to the clinic (bonus to not have to go thru the ER). We were planning on going back to the clinic anyway, just to do another blood test and see if he needed a transfusion. So now Hayden is being admitted for at least 48 hours (in Feb it was a very long 11 days). The fever is likely due to the zero neutrophil count but they will watch him closely to ensure that he doesn’t have an infection – that is besides the oral thrush (that may explain the short-lived ear ache on Wednesday night).
So if they goldeye are in fact running out at Nutimik, they will do so with no interruptions from our little fisherman.
Hayden’s temperature started creeping up last night. At about 5 a.m., he came to tell us that he hurt all over – his temp was 38. We called the doctor and he recommended that, seeing as Fridays are clinic days, we should let him sleep and arrive early to the clinic (bonus to not have to go thru the ER). We were planning on going back to the clinic anyway, just to do another blood test and see if he needed a transfusion. So now Hayden is being admitted for at least 48 hours (in Feb it was a very long 11 days). The fever is likely due to the zero neutrophil count but they will watch him closely to ensure that he doesn’t have an infection – that is besides the oral thrush (that may explain the short-lived ear ache on Wednesday night).
So if they goldeye are in fact running out at Nutimik, they will do so with no interruptions from our little fisherman.
Thursday, August 13, 2009
The home stretch
It looked like we were going to sail through the rest of the DI treatment phase but by Wed/Thurs last week, Hayden was feeling pretty rotten. His head was pounding, he started barthing, and on Friday his temperature started to spike (ugh). Unfortunately, we can't give him Tylenol when his neutrophil count is low. Fortunately, Friday is a clinic day so Tom took him in for a blood test. You can imagine our shock when Dr. Stoffman announced that Hayden's neutrophil count was high...really high! On Tuesday, he was neutropenic (ANC = .61). On Friday, he was at 1.33. Seriously, I can count on one hand the times that H WASN'T neutropenic during the last 8+ months so this floored us. We later learned that the same drug that caused all of the horrible flu-like symptoms (ara C / cyterabine), can also spike neutrophil counts. So now he could go out in public, but any scent of food made him barth and sunlight made his head ache. Needless to say, it was a pretty low-key weekend.
Hayden was still feeling crappy on Monday so we kicked off our summer vacation (Tom and I took the week off) with another unscheduled trip to the clinic. Hayden's neutrophil count was through the roof (ANC = 1.94) so Tylenol was still OK. At our regularly-scheduled clinic appointment on Tuesday, Hayden got his very last thigh injections - EVER! This time he took both at once and added another step to his poke routine - at the thumbs-up, I sang the SpongeBob Square Pants theme song. What a relief to never have to stare down those needles again...that was the only thing that got H really worked up. So done.
By Wednesday Hayden was feeling well...and just in time because he was sick of being sick. We kept promising that he's almost through the worst of it, but I don't think he got it. And no wonder...this poor kid has been in suck-it-up mode for so long that, to an 8-year-old, it probably seems never ending. BUT IT IS!
Next week is our last week of the dreaded DI treatment phase. We have an appointment on Tuesday for some run-of-the-mill chemo (hehehehe...yeah, there's such a thing). After that, we wait for his counts to hit the required minimums, then we are in maintenance. The thing with maintenance is that it's easier than any other phase, and it only gets better. The treatments gradually lessen until March 24, 2012 - and then, my friends, it's all over.
PS: we did get out to enjoy the nicest week of the summer (so far). Despite H's very low hemoglobin (affects energy & stamina) we went to Oasis and today he golfed a solid 9 holes. Platelets are also low so he is a walking bruise...but happy to be feeling well.
Hayden was still feeling crappy on Monday so we kicked off our summer vacation (Tom and I took the week off) with another unscheduled trip to the clinic. Hayden's neutrophil count was through the roof (ANC = 1.94) so Tylenol was still OK. At our regularly-scheduled clinic appointment on Tuesday, Hayden got his very last thigh injections - EVER! This time he took both at once and added another step to his poke routine - at the thumbs-up, I sang the SpongeBob Square Pants theme song. What a relief to never have to stare down those needles again...that was the only thing that got H really worked up. So done.
By Wednesday Hayden was feeling well...and just in time because he was sick of being sick. We kept promising that he's almost through the worst of it, but I don't think he got it. And no wonder...this poor kid has been in suck-it-up mode for so long that, to an 8-year-old, it probably seems never ending. BUT IT IS!
Next week is our last week of the dreaded DI treatment phase. We have an appointment on Tuesday for some run-of-the-mill chemo (hehehehe...yeah, there's such a thing). After that, we wait for his counts to hit the required minimums, then we are in maintenance. The thing with maintenance is that it's easier than any other phase, and it only gets better. The treatments gradually lessen until March 24, 2012 - and then, my friends, it's all over.
PS: we did get out to enjoy the nicest week of the summer (so far). Despite H's very low hemoglobin (affects energy & stamina) we went to Oasis and today he golfed a solid 9 holes. Platelets are also low so he is a walking bruise...but happy to be feeling well.
Tuesday, August 4, 2009
1 more week of the tuff stuff
Short but sweet – that best describes Hayden’s high-blood-count stint. He finally saw Transformers and I must say that I enjoyed the boys’ reactions more than the movie. They were so excited when Bumblebee burst onto the screen! Not exactly wholesome entertainment but hey, there was no getting around it. Afterward, they had a blast in the arcade…and the whole thing was repeated a few days later when Hayden and cousin Chandler went to Harry Potter.
Hayden was feeling well so we went to the lake on Saturday. He loved hanging out with his cousins and lake friends – they biked to the store for candy, played ghost tag, and went to the park. We hit the beach on Sunday and the strangest thing happened. The clouds parted and a massive yellow ball glowed in the sky. It emitted a brilliant light that radiated heat...I don’t know how to describe it but it felt great. People from all around came outside to wonder at this miracle, even frolic. Yes, we all frolicked....even Uncle Todd.
Hayden was back at the clinic today for a blood test (ANC = .61) and chemo (cyterabine via Iron Man port), along with an anti-nausea med. Plus we medicate him at home. Tomorrow he’ll be at the PDU for a spinal shot of methotrexate. The week will wind down with thigh injections on Thursday and Friday – then that’s it for the tough stuff. No sweat, huh?
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