In other news:
- Tom is going back to work next week
- Grandma's dude was voted out on Survivor
- Mom cut all her hair off (well...a hairstylist did)
Thursday, February 26, 2009
Still waiting...
H is still in the hospital - it's been a week. Still waiting for his blood counts to start coming back up...still no sign of it. Still spiking the occasional fever. Still no sign of infection from the blood cultures.
In other news:
In other news:
Saturday, February 21, 2009
Hell I would
Introducing the first-ever ‘Hell I Would’ list.
The concept is simple – take a common rule, then trash it by starting the conflicting statement with ‘Hell, I would…’.
You’re not allowed to play video games unless they’re rated E for everyone.
Hell, I would have brought Grand Theft Auto to the hospital during the induction phase if it made him smile.
No swearing.
Hell, I would probably curse a blue streak if I saw another nurse coming at me with a needle.
No running in the house.
Hell, I would smash every vase to see you skidding out as you round the corner at top speed.
You can’t have candy for breakfast.
Hell, I would dip his Webkinz in syrup, roll it in sprinkles, and serve it on a chocolate platter if he could get it down and keep it down.
Say no to drugs
Hell, I would bake the brownies myself if I thought it would help.
And now we wait
Hayden's still in the hospital. The blood cultures do not yet indicate that he's fighting an infection. So his fever may be due to the fact that his blood counts (especially those neutrophils) bottomed out. His temp went over 38 degrees last night (37 is normal) so we need to wait and see what happens. If he spikes a fever again, we'll do more blood cultures and wait some more.
Apparently this is normal at the end of the consolidation phase. In fact, it may last several weeks (now they tell us!). They can't start the next treatment phase, called interim maintenance, until his counts are back up.
Some of the old symptoms appear to be starting to return...specifically body aches and mobility issues. However, he got morphine today and is now quite comfortable (Tylenol is a fever suppressant so they won't go there). And he's eating fairly well so as long as we avoid constipation, we can ride this out. The challenge is keeping him hydrated, getting those meds in him, and getting him out of bed. But Terry (she's an awesome nurse) promised him a double-sticker bonus for every lap he does around the nurses' station before her shift ends...and he loves a challenge (good thing!). I'm going to have to stock them with Sponge Bob stickers to keep him motivated.
Apparently this is normal at the end of the consolidation phase. In fact, it may last several weeks (now they tell us!). They can't start the next treatment phase, called interim maintenance, until his counts are back up.
Some of the old symptoms appear to be starting to return...specifically body aches and mobility issues. However, he got morphine today and is now quite comfortable (Tylenol is a fever suppressant so they won't go there). And he's eating fairly well so as long as we avoid constipation, we can ride this out. The challenge is keeping him hydrated, getting those meds in him, and getting him out of bed. But Terry (she's an awesome nurse) promised him a double-sticker bonus for every lap he does around the nurses' station before her shift ends...and he loves a challenge (good thing!). I'm going to have to stock them with Sponge Bob stickers to keep him motivated.
Thursday, February 19, 2009
3 months today
Not exactly how we wanted to mark the third month of treatment, but Hayden spiked a fever today and went in to the hospital. Did I jinx him in my last post? Nah...it was bound to happen. How can you be neutropenic (low on infection-fighting blood cells) that long and not pick up SOMETHING? So the Survivor party was canceled but we watched it anyway (go JT!). And, as is the customary, I picked up Goosebumps movies for tomorrow.
Hayden will be in until at least Sunday. He has to be fever-free for 48 hours before he can go home. Plus it takes about that long for the blood cultures to grow and tell us exactly what kind of infection he has (if any). He's on antibiotics and is getting another blood transfusion. Several nurses remarked that, seeing as this is the first time he's back since December, he's doing very well. It's a small consolation but we'll take it....so long as it's not another blood infection (staph aureous). ooiiyyyy
So the roller coaster ride continues. To overuse another analogy....I recently told someone that H is like the tide. When he's up, everything rises with him. And when he's down, we all go down. The good news is that, following the induction phase, we've levelled out somewhat. I know of children who have been diagnosed with leukemia after Hayden and my heart breaks for them. If you're reading this, please have faith that it gets better. Your normal child will return when the steroids leave their system. My little sweet pea once hurled a puke pan at my head because I failed to completely dry it after I washed it. Funny huh? Sure, but not so much at the time.
In the first month, we worried endlessly about his inability to walk (or even move at times) and possible damage caused by that dreaded blood infection. We still worry, of c0urse (that will likely never change) but we're more accustomed to living with cancer. When I think about it, it's absolutely mindboggling that spinal taps, blood transfusions, thigh injections, home care nurses, central lines (remember the Iron Man port), blood tests, and chemo have become a routine part of our lives. It's good, I guess. Hayden's resolve still amazes us. Whatever it takes to beat cancer!
Once again, thank you to everyone who has included Hayden in their prayers and thoughts. So many people have joined us in this battle...we sincerely appreciate it. You keep us strong.
Hayden will be in until at least Sunday. He has to be fever-free for 48 hours before he can go home. Plus it takes about that long for the blood cultures to grow and tell us exactly what kind of infection he has (if any). He's on antibiotics and is getting another blood transfusion. Several nurses remarked that, seeing as this is the first time he's back since December, he's doing very well. It's a small consolation but we'll take it....so long as it's not another blood infection (staph aureous). ooiiyyyy
So the roller coaster ride continues. To overuse another analogy....I recently told someone that H is like the tide. When he's up, everything rises with him. And when he's down, we all go down. The good news is that, following the induction phase, we've levelled out somewhat. I know of children who have been diagnosed with leukemia after Hayden and my heart breaks for them. If you're reading this, please have faith that it gets better. Your normal child will return when the steroids leave their system. My little sweet pea once hurled a puke pan at my head because I failed to completely dry it after I washed it. Funny huh? Sure, but not so much at the time.
In the first month, we worried endlessly about his inability to walk (or even move at times) and possible damage caused by that dreaded blood infection. We still worry, of c0urse (that will likely never change) but we're more accustomed to living with cancer. When I think about it, it's absolutely mindboggling that spinal taps, blood transfusions, thigh injections, home care nurses, central lines (remember the Iron Man port), blood tests, and chemo have become a routine part of our lives. It's good, I guess. Hayden's resolve still amazes us. Whatever it takes to beat cancer!
Once again, thank you to everyone who has included Hayden in their prayers and thoughts. So many people have joined us in this battle...we sincerely appreciate it. You keep us strong.
Tuesday, February 17, 2009
Neutrophils wanted
Clinic visit today - neutrophils are ZERO. Not low....non-existent. This is the longest stretch we've had so far. Typically, Hayden's blood counts bounce back up near the end of treatment but this time...not so much. Oh well, if we delay the next phase, it will be the first time. That's pretty good.
And surprisingly, his weight was down today. Sheesh. He needs to be better hydrated. That will also help his chapped lips.
So now some good news...let's see...his mouth soars are clearing up. He's neutropenic but not spiking a fever or getting sick. He got JT in the Survivor pool. He's still super cute. And, most of the time, a pretty happy kid. How's that for lemonade. mreh.
And surprisingly, his weight was down today. Sheesh. He needs to be better hydrated. That will also help his chapped lips.
So now some good news...let's see...his mouth soars are clearing up. He's neutropenic but not spiking a fever or getting sick. He got JT in the Survivor pool. He's still super cute. And, most of the time, a pretty happy kid. How's that for lemonade. mreh.
Thursday, February 12, 2009
Gained 2 lbs...a step in the right direction
Not something I would typically celebrate but in Hayden’s case, it’s a good thing. He’s still having tummy issues and the occasional barth but, as of Tuesday’s clinic visit, he is up two pounds (woo hoo!). His blood count test showed he was still low, including neutrphils (a type of white blood cell that helps fight infection), which means his immune system is still compromised. His red blood cell count was also really low. In fact, Dr. Stoffman was amazed that he had so much energy...but that came to a screeching halt on Wednesday. So he stayed home from school that morning, and then had a blood transfusion in the afternoon. Today was the Valentine’s Day party (no school tomorrow) so he was glad he didn’t miss that.
We are creeping up on the 3-month anniversary of Hayden’s diagnosis. Do I dare reflect on all that’s happened? What’s to come? Oooiiiyyy….not today…it’s Thursday after all and the season premiere of Survivor! We are big fans. It’s time to make our picks.
We are creeping up on the 3-month anniversary of Hayden’s diagnosis. Do I dare reflect on all that’s happened? What’s to come? Oooiiiyyy….not today…it’s Thursday after all and the season premiere of Survivor! We are big fans. It’s time to make our picks.
Thursday, February 5, 2009
A wish granted
Young Padawan Hayden will hone his lightsabre skills at the Jedi Training Academy in Disneyland. The Rainbow Society has generously granted Hayden's wish to experience the power of the Force!
Click here to check it out:
http://disneyworld.disney.go.com/parks/hollywood-studios/attractions/star-wars-jedi-training-academy/
This is the boy who, for 30 minutes at a time at only 3 years old, would go out on the deck with his foam lightsabre to save the galaxy. And if you've seen his staff routine, you know he's been practicing. Hayden knows every character in every Star Wars movie and video game (including Clone Wars!). So we are headed to Florida - probably next winter. Woo-hoo!
If the look on Hayden's face when we get to Disney World is even close to his expression when we met with The Rainbow Society, it'll be awesome. The only hard part is waiting a WHOLE YEAR! It's an eternity for a 7-year old but Hayden knows that it will be so much more enjoyable when he is healthy and strong. So he is even more determined to take his meds, eat well, and listen to the doctors and nurses.
For us, it's nice to know that we'll be staying at a resort that is so accomodating for sick kids - it's called Give Kids the World. They take care of everything...no waiting in line for rides at theme parks, extra insurance, good flight times....plus things like free ice cream, Christmas every Thursday, and so much more. It will be incredible and he's earned it.
BTW - Hayden is managing to keep food down now...even gained 0.1 kg! His tastes are still off (a common side-effect of chemo) but we are managing to find things he will eat. He is a trooper.
Click here to check it out:
http://disneyworld.disney.go.com/parks/hollywood-studios/attractions/star-wars-jedi-training-academy/
This is the boy who, for 30 minutes at a time at only 3 years old, would go out on the deck with his foam lightsabre to save the galaxy. And if you've seen his staff routine, you know he's been practicing. Hayden knows every character in every Star Wars movie and video game (including Clone Wars!). So we are headed to Florida - probably next winter. Woo-hoo!
If the look on Hayden's face when we get to Disney World is even close to his expression when we met with The Rainbow Society, it'll be awesome. The only hard part is waiting a WHOLE YEAR! It's an eternity for a 7-year old but Hayden knows that it will be so much more enjoyable when he is healthy and strong. So he is even more determined to take his meds, eat well, and listen to the doctors and nurses.
For us, it's nice to know that we'll be staying at a resort that is so accomodating for sick kids - it's called Give Kids the World. They take care of everything...no waiting in line for rides at theme parks, extra insurance, good flight times....plus things like free ice cream, Christmas every Thursday, and so much more. It will be incredible and he's earned it.
BTW - Hayden is managing to keep food down now...even gained 0.1 kg! His tastes are still off (a common side-effect of chemo) but we are managing to find things he will eat. He is a trooper.
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