This is me, saying to all of you, that I'm vowing to get back in the saddle and to be better about keeping this blog updated!
While I would certainly give anything to have Chris NOT be out of work on disability right now, the extra time with him at night is priceless - I didn't realize how much I missed having him around at night during the week. Family time is awesome! BUT, more family time means less free time, and less free time means less blog time!
So - to Aunt Kate - HAPPY 26th BIRTHDAY!! to Aunt Trae - Welcome Back to CT!!!
We're all doing REALLY well, Chris included! Pain is present, but is becoming more localized and every day I'm seeing more and more of the man I married (how I've missed him . . .) We're still looking into different options for treatment (I'm still after the cure!) and we're taking each day as it comes.
Life really is beautiful. And valuable. You realize what's most important to you when someone threatens you with the possibility of taking it all away. Lucky for us, we refuse to let it be taken.
Monday, March 30, 2009
Wednesday, March 25, 2009
"Much"
It's the new "I love you" in our house (as in "I love you very much"). It's another "Shane-ism" and it lights up our hearts!
******
Chris is feeling, and doing, better every day. There's still pain, but that's to be expected for a while. The light is back in eyes. No, no. Scratch that. The LIFE is back in his eyes and it's SO good to see. He's not spending all day in bed anymore. His fast-acting pain medication is being used less and less often. He's eating a little bit more than before. There's a new sense of hope in our house for the first time in months and we're holding on tight with both hands!
Keep those prayers coming!
******
Chris is feeling, and doing, better every day. There's still pain, but that's to be expected for a while. The light is back in eyes. No, no. Scratch that. The LIFE is back in his eyes and it's SO good to see. He's not spending all day in bed anymore. His fast-acting pain medication is being used less and less often. He's eating a little bit more than before. There's a new sense of hope in our house for the first time in months and we're holding on tight with both hands!
Keep those prayers coming!
Wednesday, March 18, 2009
Celebrating You
My precious little boy. Today is one of those rare days where I took a piece of time for myself and looked back at some of these posts on this blog from the last (almost) two years; remembering you. Celebrating you.
It still seems like only yesterday that you were wobbling around on two unsteady little legs as you pushed your "walkabout" up and down the length of the playroom, teaching yourself to walk. It seems like just last week that I snapped that picture of you sitting in your highchair with a face covered in spaghetti sauce and the devil's look in your eyes and smile! It seems like just then, but it was long ago.
There are days when it's difficult for me to look back at the baby you once where, knowing you never will be again. Those are the days when it hurts my heart to realize just how quickly you are growing up, how soon your first day of school will be upon us, complete with your first lunch box and first real friend.
There are days (most days) when my heart breaks to think that you may really be my only baby. That it may really just be you. Baby boy, my precious baby boy, trust me when I tell you it's not that you're not enough for me (for I consider myself the luckiest mom in the world to have you), it's just that this isn't something I ever wanted for you. I wanted so much more for you. I never wanted for you to be an only child. I wanted to give you your best friend, your built-in playmate, your companion with which to walk through life. But I'm realizing, slowly, that life may have other plans in store for us. And in my heart, I know that that will be okay too. For you, Shane Patrick, you are the flame on my candle, on our candle, and you are all the light we need.
But still, looking back and realizing the details of the moments that have already slipped through my mind, I'm glad to have this blog, this comfort place for me. It's good to have a place to come back to, to be with the you that you once were - on the days when my heart is strong enough to visit there.
And so today I celebrate you. The you you are today. The you at almost 3 years old. My silly little boy who has found a new fondness in Mickey Mouse Clubhouse. The you that asks for "two treats" at bedtime; "two nanas. two puffs. two fishies" The you that makes my heart melt at the end of the day when you first catch a glimpse of me as I walk in to pick you up from daycare and how your face lights up enough to brighten even the darkest room. The you that still loves to dance and "sing" to the Wiggles; the you that knows which song, which dance step, is next - long before it comes. The you that wants to play in the pool, outside, even though it's only March.
It still seems like only yesterday that you were wobbling around on two unsteady little legs as you pushed your "walkabout" up and down the length of the playroom, teaching yourself to walk. It seems like just last week that I snapped that picture of you sitting in your highchair with a face covered in spaghetti sauce and the devil's look in your eyes and smile! It seems like just then, but it was long ago.
There are days when it's difficult for me to look back at the baby you once where, knowing you never will be again. Those are the days when it hurts my heart to realize just how quickly you are growing up, how soon your first day of school will be upon us, complete with your first lunch box and first real friend.
There are days (most days) when my heart breaks to think that you may really be my only baby. That it may really just be you. Baby boy, my precious baby boy, trust me when I tell you it's not that you're not enough for me (for I consider myself the luckiest mom in the world to have you), it's just that this isn't something I ever wanted for you. I wanted so much more for you. I never wanted for you to be an only child. I wanted to give you your best friend, your built-in playmate, your companion with which to walk through life. But I'm realizing, slowly, that life may have other plans in store for us. And in my heart, I know that that will be okay too. For you, Shane Patrick, you are the flame on my candle, on our candle, and you are all the light we need.
But still, looking back and realizing the details of the moments that have already slipped through my mind, I'm glad to have this blog, this comfort place for me. It's good to have a place to come back to, to be with the you that you once were - on the days when my heart is strong enough to visit there.
And so today I celebrate you. The you you are today. The you at almost 3 years old. My silly little boy who has found a new fondness in Mickey Mouse Clubhouse. The you that asks for "two treats" at bedtime; "two nanas. two puffs. two fishies" The you that makes my heart melt at the end of the day when you first catch a glimpse of me as I walk in to pick you up from daycare and how your face lights up enough to brighten even the darkest room. The you that still loves to dance and "sing" to the Wiggles; the you that knows which song, which dance step, is next - long before it comes. The you that wants to play in the pool, outside, even though it's only March.
The you that will still climb up in my lap on the occassional night for a few minutes of cuddle time before you drift off to sleep. Those are still my favorite moments. Sometimes I think you give them to me just to please me. Thank you.
Thank you for being you. And thank you for giving me so many reasons to celebrate you. To celebrate life.
Tuesday, March 17, 2009
Better Every Day
We've been home from the hospital since Saturday afternoon and the difference in Chris each day is amazing.
In many ways, he's a new man.
It's obvious that the embolization has been a success! While he's still having severe pain in his liver, this time the pain is a "healing pain", a "the tumors are shrinking" kind of pain, it's a good pain this time. He's able to eat without having pain and nasuea. His body doesn't hurt all over anymore. His blood pressure is becoming steady and his BP meds have been decreased again. He's awake more than 30 minutes at a time. He can eat an entire can of Beefaroni (I know, I know, but he needs to GAIN weight, remember!!) without getting sick. His liver used to be hard as rock before this procedure, you could actually feel the outline of it just by running your hand over his abdomen - here we are, just a week later, and his liver is already so much softer!! He's a man on the mend and we're SO thankful to the Dr's at Sloan-Kettering for giving Chris his life back!
We're actually looking forward to meeting with Dr. G at the end of April to see the progress and to schedule the embolization for the left side of his liver. We're actually excited to go through this again, because while traumatizing in so many ways, we can ALREADY see the benefit in it and we're eager to have that clean slate, even if just for a few years. It's good to know that his liver should never again get to be as bad as it was. This is a new starting point for us. We're hoping this is the turn in events that we've been (not so) patiently waiting for.
We're ready to take back our life. We're ready to enjoy the summer lounging around in the backyard with our son. We're anxious to drive into Manhattan for PLEASURE, not for a Dr. appt! Today may very well be the first day of the rest of our life!
In many ways, he's a new man.
It's obvious that the embolization has been a success! While he's still having severe pain in his liver, this time the pain is a "healing pain", a "the tumors are shrinking" kind of pain, it's a good pain this time. He's able to eat without having pain and nasuea. His body doesn't hurt all over anymore. His blood pressure is becoming steady and his BP meds have been decreased again. He's awake more than 30 minutes at a time. He can eat an entire can of Beefaroni (I know, I know, but he needs to GAIN weight, remember!!) without getting sick. His liver used to be hard as rock before this procedure, you could actually feel the outline of it just by running your hand over his abdomen - here we are, just a week later, and his liver is already so much softer!! He's a man on the mend and we're SO thankful to the Dr's at Sloan-Kettering for giving Chris his life back!
We're actually looking forward to meeting with Dr. G at the end of April to see the progress and to schedule the embolization for the left side of his liver. We're actually excited to go through this again, because while traumatizing in so many ways, we can ALREADY see the benefit in it and we're eager to have that clean slate, even if just for a few years. It's good to know that his liver should never again get to be as bad as it was. This is a new starting point for us. We're hoping this is the turn in events that we've been (not so) patiently waiting for.
We're ready to take back our life. We're ready to enjoy the summer lounging around in the backyard with our son. We're anxious to drive into Manhattan for PLEASURE, not for a Dr. appt! Today may very well be the first day of the rest of our life!
Thursday, March 12, 2009
A Better Day
I got the hospital this morning around 7:30 and was happy to see Chris standing (and wearing pants!) when I got up to his room!
His blood pressure is stable (139/84) though they do have him on 400mg of BP medication 3x/day! They're hoping to start weaning him off of that today.
He's in some pain, but it's tolerable. He was also feeling a bit nauseous this morning, but an IV drip of Reglan quickly took care of that problem! We even walked the halls for a few minutes this morning!
Dr. G has stopped by already to say again how pleased he is with the results already. Every bit of tumor on the right side of his liver is dead! He said he just really couldn't be happier and that he wants to do the left side in 6 weeks or so if Chris is feeling up to it. He wants to get the left side done before it gets as out of hand as the right side was.
So, the goal today is to wean Chris down on the BP meds, wean him off the pain pump, get him eating and get him walking. If we can manage to do all of that than maybe we really can get out of here tomorrow!
We'll continue to keep everyone posted. Please continue to keep Chris in your prayers.
His blood pressure is stable (139/84) though they do have him on 400mg of BP medication 3x/day! They're hoping to start weaning him off of that today.
He's in some pain, but it's tolerable. He was also feeling a bit nauseous this morning, but an IV drip of Reglan quickly took care of that problem! We even walked the halls for a few minutes this morning!
Dr. G has stopped by already to say again how pleased he is with the results already. Every bit of tumor on the right side of his liver is dead! He said he just really couldn't be happier and that he wants to do the left side in 6 weeks or so if Chris is feeling up to it. He wants to get the left side done before it gets as out of hand as the right side was.
So, the goal today is to wean Chris down on the BP meds, wean him off the pain pump, get him eating and get him walking. If we can manage to do all of that than maybe we really can get out of here tomorrow!
We'll continue to keep everyone posted. Please continue to keep Chris in your prayers.
Wednesday, March 11, 2009
Finally
As of 1:30 this afternoon, Chris is in his room and is resting comfortably. His blood pressure is still a little higher than they'd like (140's/90's), but compared to yesterday (and even this morning) he's doing well.
The catheter in his artery finally came out around noon and while we were down in interventional radiology having that done, Dr. G. stopped me to say how pleased he was already with the looks of the CT scan they did of his liver this morning. He was really excited about the difference in the tumors already, and it hadn't even been 24 hours yet! He was so pleased he was telling everyone on the floor how well things were going!!! He also said he couldn't wait to show Chris and I the difference in the before and after scans at our next clinical appointment with him in early April! This news alone makes up for all the turmoil in the last 36 hours!!!
Right now the goal is to monitor his blood pressure and his pain. If all goes well and they're able to get a handle on both, then they'll let him go home on Friday, that's the soonest they'll let him out. So we'll see. We're both missing our little guy like crazy and we're anxious to get him back in our arms where he belongs!
Thank you for all the prayers, calls, support and good thoughts over the last few days. They mean a lot to us. Keep them coming!
The catheter in his artery finally came out around noon and while we were down in interventional radiology having that done, Dr. G. stopped me to say how pleased he was already with the looks of the CT scan they did of his liver this morning. He was really excited about the difference in the tumors already, and it hadn't even been 24 hours yet! He was so pleased he was telling everyone on the floor how well things were going!!! He also said he couldn't wait to show Chris and I the difference in the before and after scans at our next clinical appointment with him in early April! This news alone makes up for all the turmoil in the last 36 hours!!!
Right now the goal is to monitor his blood pressure and his pain. If all goes well and they're able to get a handle on both, then they'll let him go home on Friday, that's the soonest they'll let him out. So we'll see. We're both missing our little guy like crazy and we're anxious to get him back in our arms where he belongs!
Thank you for all the prayers, calls, support and good thoughts over the last few days. They mean a lot to us. Keep them coming!
Long Day
I'm happy to say that yesterday Chris finally had the embolization procedure done on the right side of his liver. As we speak, the tumors that were embolized are starting to die and we should hopefully get 18-24 months before they return and before Chris will need another embolization on that side.
I'm not so happy to say that the procedure didn't go as well as they'd like. There were a few complications related to his blood pressure and yesterday turned into a very long and stressful day.
About 90 minutes after I left Chris in the procedure room, Dr. G came out to say that Chris's blood pressure was 200/130 and that they were having a hard time controlling it. They finally wheeled him back up to recovery at around 1:45. They wouldn't let us in to see him until 6. that was an incredbily long 5 hours. In that five hours they tried every medication possible, and still his blood pressure was 190/120. FINALLY, they started an IV drip, and the next time we saw him, at 8, his pressure was down to 139/90. At that point, we went out and grabbed a quick dinner and got back to Chris's side around 10. His BP was the same at that point and he was going to be riding out the night in recovery.
The other component here is that his blood pressure skyrocketed before they were able to remove the catheter from his artery. This was the catheter from which they did the embolization. Once his blood pressure became so elevated, it wasn't safe to remove the catheter without putting Chris's life at risk. Because of the catheter, he has to remain flat on his back and not move. His leg is actually in an immobilizer. The hope is that his blood pressure would've gotten low enough overnight to be able to remove the catheter this morning. After the catheter is removed, he'll go back to recovery for a few hours and will then finally make his way into a room.
This is all uncommon for embolization procedures. While it is common for a patients blood pressure to become elevated during/after the procedure, it's not common for it to take so long for it to come back down. Embolization patients don't normally spend longer than 4 hours in recovery, let alone the entire night. That's my husband, never doing anything the easy way!
When we left him last night he was still pretty groggy from the anesthesia and all the medications. He was complaining of his mouth being dry (they don't want him to have anything to drink while he's lying flat on his back and still so groggy), but he was having some ice chips to combat that problem. His biggest complaint, by far, was the back pain he was experiencing from having to lie flat on his back for all this time. I'm sure he'll be more than happy to be able to get up and move around once this catheter is removed.
All in all, it was a long, stressful, day - but it's over and this emoblization should help Chris immensely with the pain and discomfort he's been having. These last few weeks haven't been easy for us and we're looking forward to a turn of events!!
I'll be heading back up to the hospital in an hour or so and will post another update as soon as I'm able, possibly even later this morning/early afternoon.
Please keep the prayers coming. Prayers for a speedy recovery and for the embolization to have been a success!
I'm not so happy to say that the procedure didn't go as well as they'd like. There were a few complications related to his blood pressure and yesterday turned into a very long and stressful day.
About 90 minutes after I left Chris in the procedure room, Dr. G came out to say that Chris's blood pressure was 200/130 and that they were having a hard time controlling it. They finally wheeled him back up to recovery at around 1:45. They wouldn't let us in to see him until 6. that was an incredbily long 5 hours. In that five hours they tried every medication possible, and still his blood pressure was 190/120. FINALLY, they started an IV drip, and the next time we saw him, at 8, his pressure was down to 139/90. At that point, we went out and grabbed a quick dinner and got back to Chris's side around 10. His BP was the same at that point and he was going to be riding out the night in recovery.
The other component here is that his blood pressure skyrocketed before they were able to remove the catheter from his artery. This was the catheter from which they did the embolization. Once his blood pressure became so elevated, it wasn't safe to remove the catheter without putting Chris's life at risk. Because of the catheter, he has to remain flat on his back and not move. His leg is actually in an immobilizer. The hope is that his blood pressure would've gotten low enough overnight to be able to remove the catheter this morning. After the catheter is removed, he'll go back to recovery for a few hours and will then finally make his way into a room.
This is all uncommon for embolization procedures. While it is common for a patients blood pressure to become elevated during/after the procedure, it's not common for it to take so long for it to come back down. Embolization patients don't normally spend longer than 4 hours in recovery, let alone the entire night. That's my husband, never doing anything the easy way!
When we left him last night he was still pretty groggy from the anesthesia and all the medications. He was complaining of his mouth being dry (they don't want him to have anything to drink while he's lying flat on his back and still so groggy), but he was having some ice chips to combat that problem. His biggest complaint, by far, was the back pain he was experiencing from having to lie flat on his back for all this time. I'm sure he'll be more than happy to be able to get up and move around once this catheter is removed.
All in all, it was a long, stressful, day - but it's over and this emoblization should help Chris immensely with the pain and discomfort he's been having. These last few weeks haven't been easy for us and we're looking forward to a turn of events!!
I'll be heading back up to the hospital in an hour or so and will post another update as soon as I'm able, possibly even later this morning/early afternoon.
Please keep the prayers coming. Prayers for a speedy recovery and for the embolization to have been a success!
Sunday, March 8, 2009
Oh, What The Heck
Here's one more video clip!
That makes 3 posts in one day! Two with video and one with 10+ photos!
How's that for making up for lost time?!
His Love For The Wiggles
I'll admit it. I LOVE photographs. I love EVERYTHING about them. They're moments. Keepsakes. They're timeless.
Video . . . video is another story. We don't shoot much of it in this house (though I'm trying to rectify that situation and actually have TONS of video from Christmas if I can ever figure out how to edit and share it!)
Aunt Kate captured this on her cell phone a month or so ago. The quality isn't the greatest and it's fairly short, but it is funny! And it's Shane. 100%, dead-on, Shane. This is Shane on a daily basis, doing what he loves to do . . .dancing and singing to the Wiggles!
And in case you have a hard time trying to figure out what he's saying, he's saying goodbye to the "wacks". As in "quack". As in duck.
Welcome into our life!
Family First
We may have a lot going on right now, but it doesn't mean we don't know how to take advantage of a good thing!
Yesterday was the first nice day we've had since summer turned into fall! The temperature here reached (almost!) 60 degrees and we took full advantage of the nice weather!
We grabbed some lunch and headed down to the beach for a little exploration and play! By the time we left, the little guy was so worn out that he went home and took a 3 hour nap!
We're hoping today is another nice day like yesterday, and that this weekend is a pre-cursor of good things to come this week!
My one and only:
"Ooohh, rocks"
Shane's attempt at "skipping rocks":
Enjoying the fresh air:
Sticks!!
Shane's attempt at "skipping rocks":Enjoying the fresh air:
Sticks!!
"See, Mama!": 
They still manage to make my heart stop:
"Hi, Mama!"
Best friends:
Taking it all in:
"See the boat, Shane?!"
I was there, too!
My two favorites from the day. These boys are my entire life and I cherish MANY, MANY more decades of moments like these.
They still manage to make my heart stop:
"Hi, Mama!"
Best friends:
Taking it all in:
"See the boat, Shane?!"
I was there, too!
My two favorites from the day. These boys are my entire life and I cherish MANY, MANY more decades of moments like these.Tuesday, March 3, 2009
127/81
That was Chris's blood pressure at our monthly appointment with Dr. D. yesterday!!! Way down from 150/96 - which is what it was when we were at Sloan for the embolization and way below the /90 that Dr. G. wanted us to be at. If this continues, we should be all set to get Chris this procedure really soon!
He goes back to Sloan tomorrow morning to meet with a MD there about his blood pressure, but it looks like we're heading in the right direction!
We'll continue to keep everyone posted. Keep those prayers coming!
He goes back to Sloan tomorrow morning to meet with a MD there about his blood pressure, but it looks like we're heading in the right direction!
We'll continue to keep everyone posted. Keep those prayers coming!
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