Last Post Thread

[Redbaron]

Humming you a lullaby

 

[BethAnne]

 

[KayTheCurler]

I'm heading into the city to see the radiation oncologist today. If all goes as tentatively planned, I'll start radiation on December 9.

 

[KayTheCurler]

Not sure why those words posted before I added my own. Oh well. I wanted to say I hope any info you get is encouraging. Will definitely be thinking of you.

 

[Northwind]

Thanks @KayTheCurler. I will be starting radiation on December 9 and will have 16 treatments. My last will be on Jan 2. I'll be staying at the Lodge near the centre for the first week. It feels good to know this is the last of the significant treatments. I'll have meds after this and scans/monitoring.

 

[KayTheCurler]

All our journeys are mastered one step at a time. Keep stepping up.

 

[Jaebius]

Spent this morning's first part teaching kids that double decker buses don't go in the sky. Life's fun.

 

[Mendalla]

Spent this morning's first part teaching kids that double decker buses don't go in the sky. Life's fun.

Airbus A380?

Nah, I guess not.

 

[Jaebius]

Airbus A380?

Nah, I guess not.

We're discussing modes of transportation. It's a kindy class, so it's pretty basic. "Who wants to go in a hot air balloon?"

 

[Mendalla]

We're discussing modes of transportation. It's a kindy class, so it's pretty basic. "Who wants to go in a hot air balloon?"

Me! Me! Sigh, never done it, though. And the glory days of ballooning around here seem to have ended. I don't think I saw one hot air balloon all summer this year. Not if that's longterm fallout from the cancellation of Balloonfest or insurance regs or what.

 

[DaisyJane]

We took Matthew to a Dr. Suess exhibit today. He loved it, but has had a rough evening after arriving home. What I would give to know what is wrong. We've had to give some pretty significant PRN medication and even then aren't sure we're managing his pain. It is pretty accepted knowledge that adults (and kids) with severe CP cope with chronic pain. Matthew also has all sorts of other risk factors - seizures, GI issues - there is so much that can be compromised and he can't tell us.

 

[Jaebius]

Me! Me! Sigh, never done it, though. And the glory days of ballooning around here seem to have ended. I don't think I saw one hot air balloon all summer this year. Not if that's longterm fallout from the cancellation of Balloonfest or insurance regs or what.

You do? Okay, the next question that follows in class is, "What colour balloon? What's your favourite colour?"

 

[BethAnne]

We took Matthew to a Dr. Suess exhibit today. He loved it, but has had a rough evening after arriving home. What I would give to know what is wrong. We've had to give some pretty significant PRN medication and even then aren't sure we're managing his pain.

hopefully you can get it resolved for him. Hugs

 

[Jaebius]

We took Matthew to a Dr. Suess exhibit today. He loved it, but has had a rough evening after arriving home. What I would give to know what is wrong. We've had to give some pretty significant PRN medication and even then aren't sure we're managing his pain. It is pretty accepted knowledge that adults (and kids) with severe CP cope with chronic pain. Matthew also has all sorts of other risk factors - seizures, GI issues - there is so much that can be compromised and he can't tell us.

Sorry to hear about the seizures. I know what seizures can be like.

 

[DaisyJane]

hopefully you can get it resolved for him. Hugs

Thanks. He's been so stable for so long that it throws me for a loop when he throws these curveballs at us. We lived for years with the stress of a very medically fragile Matthew - so much so that we worked with the palliative care team for pain management (among other teams). The last few years have been so stable, and he's been so happy with great QOL. I don't think I can handle a return to the stress of the previous years.

 

[BethAnne]

Thanks. He's been so stable for so long that it throws me for a loop when he throws these curveballs at us. We lived for years with the stress of a very medically fragile Matthew - so much so that we worked with the palliative care team for pain management (among other teams). The last few years have been so stable, and he's been so happy with great QOL. I don't think I can handle a return to the stress of the previous years.

At least you know it is possible for him to be stable - that's a huge help right there...keep breathing...hugs

 

[DaisyJane]

At least you know it is possible for him to be stable - that's a huge help right there...keep breathing...hugs

Excellent point. Thanks!

 

[KayTheCurler]

Sending healthy wishes to your family this night, and ever. May there be peace and sufficient comfort for you all.

 

[Redbaron]

Sorry to hear of his rough evening, but g;ad he had a good time at the exhibit. Hoping that the rough passage will be resolved soon.

 

[Northwind]

I love that photo of Matthew. Pure joy I hope he gets stabilized and more comfortable soon.