We've got a new blog!
There's still some minor adjustments to be made, but I've decided to activate it so I can just do the upkeep on one blog instead of two!
Be sure to bookmark the new link!!
http://www.kristinmoconnor.com/familyblog/
Friday, May 15, 2009
Tuesday, May 12, 2009
rough
The last week has been rough. Tensions are high. Sleep is minimal. I think we're all emotionally drained.
And Shane, our poor, sweet little boy, all too often lately, ends up being a "casualty" in all of this. Breaks my heart. He's 3. He should have Mommy and Daddy's undivided attention, and many times, most times, our attention is anything but undivided.
Recovery on Chris is harder this time around, I think because the two procedures were done so close together, he didn't have time to completely heal from the first go around. Watching him struggle is an internal battle for me, and lately, parts of every day find me, find us, in tears. The weight loss continues, the feet continue to swell, sleep is still hard to come by, and lately, the life is gone from his eyes. He looks like a man in desperate need of a break. A break from the pain, the treatment, the recovery. Yet we know there are a few more steps we need to walk before that break will happen. That's tough on all of us.
Chris has said that most days he feels like he's just surviving. He's not living. And it's the living part he wants to get back to -we all do - and we will, no doubt. But the road is much rockier and much longer than we had imagined.
Things we used to love to do get pushed aside to make room for the things we need to do, namely, to heal. All of us. Inside and out. My therapist tells me that it's important to not let go of the things that make us, us. The photography. The walks on the beach. The trips to the children's museum. The walks thru the park with the dogs. The family vacations. The Sunday drives. The sporting events. All the things that make our family who we are - they're the things we seem to be letting go off and it's high time we regain control and welcome these things, our things, back into our life. Perhaps that is when the healing will really begin.
And Shane, our poor, sweet little boy, all too often lately, ends up being a "casualty" in all of this. Breaks my heart. He's 3. He should have Mommy and Daddy's undivided attention, and many times, most times, our attention is anything but undivided.
Recovery on Chris is harder this time around, I think because the two procedures were done so close together, he didn't have time to completely heal from the first go around. Watching him struggle is an internal battle for me, and lately, parts of every day find me, find us, in tears. The weight loss continues, the feet continue to swell, sleep is still hard to come by, and lately, the life is gone from his eyes. He looks like a man in desperate need of a break. A break from the pain, the treatment, the recovery. Yet we know there are a few more steps we need to walk before that break will happen. That's tough on all of us.
Chris has said that most days he feels like he's just surviving. He's not living. And it's the living part he wants to get back to -we all do - and we will, no doubt. But the road is much rockier and much longer than we had imagined.
Things we used to love to do get pushed aside to make room for the things we need to do, namely, to heal. All of us. Inside and out. My therapist tells me that it's important to not let go of the things that make us, us. The photography. The walks on the beach. The trips to the children's museum. The walks thru the park with the dogs. The family vacations. The Sunday drives. The sporting events. All the things that make our family who we are - they're the things we seem to be letting go off and it's high time we regain control and welcome these things, our things, back into our life. Perhaps that is when the healing will really begin.
Thursday, May 7, 2009
A Note From Our Amazing Friends & Family
Benefit for Christian O’Connor!
Sometimes charity really does begin at home…
Christian O’Connor is suffering from Neuroendocrine Carcinoma, a battle he fights valiantly along with his wife Kristin, son Shane, family and friends.
But they need your help…
Please join us and help support the O’Connor Family at Chuck’s Steak House in Darien, CT for a Steak and Eggs Brunch and Silent Auction.
Proceeds to benefit the Christian O’Connor family.
Sometimes charity really does begin at home…
Christian O’Connor is suffering from Neuroendocrine Carcinoma, a battle he fights valiantly along with his wife Kristin, son Shane, family and friends.
But they need your help…
Please join us and help support the O’Connor Family at Chuck’s Steak House in Darien, CT for a Steak and Eggs Brunch and Silent Auction.
Proceeds to benefit the Christian O’Connor family.
Date: Sunday, May 31
Time: 10am - 2pm
Place: Chuck's Steakhouse - 1340 Post Road Darien, CT
Donation: $30 per ticket, children 10 and under are free
Can’t make it to Chuck’s and still want to help the O’Connor family during this difficult time or have questions, please contact Susan Buesing at sbuesing@verizon.net or 267-475-8700.
Monday, May 4, 2009
Doing Well
So - first things first, head CT came back clear!!! It wasn't something we really ever thought was going to a problem, but still - it's good to know that everything is fine and we're SO thankful for the prayers and support that helped us get those results!
Chris is doing well. Nausea is his biggest complaint, and thankfully, that has been much better the last day or so. He has some pain, but nothing unbearable, thankfully.
His sodium levels are a bit low, but nothing that they were surprised to see. All in all, he's doing well and this embolization has gone MUCH better than the last one!
His doctors are taking him off the IV today and will start him on oral pain meds. If that all goes well, and if he continues to eat and feels up to it, they may even let him go home tonight! So, we're continuting to sit it out and wait and see what happens.
In other news, our little guy officially turned 3 yesterday!!! We'll do a big birthday post for him later in the week once things have quieted down around here.
Keep those prayers coming!!
Chris is doing well. Nausea is his biggest complaint, and thankfully, that has been much better the last day or so. He has some pain, but nothing unbearable, thankfully.
His sodium levels are a bit low, but nothing that they were surprised to see. All in all, he's doing well and this embolization has gone MUCH better than the last one!
His doctors are taking him off the IV today and will start him on oral pain meds. If that all goes well, and if he continues to eat and feels up to it, they may even let him go home tonight! So, we're continuting to sit it out and wait and see what happens.
In other news, our little guy officially turned 3 yesterday!!! We'll do a big birthday post for him later in the week once things have quieted down around here.
Keep those prayers coming!!
Saturday, May 2, 2009
Always Something
It's always something. Chris got into his room yesterday around 4:30. At 6:30 his nurse came in to say that they had ordered a CT scan of his head and he'd be going back down to the 2nd floor to have that done. NEVER a dull moment!
They were concerned because one of his eyes wasn't as open as the other eye and that eye was also appearing a bit red. They wanted to be sure it was nothing and so the CT scan was ordered.
I'm not sure when we'll get the results back. In my heart I don't think there's anything to worry about. He was still pretty groggy yesterday and he's always been one to do things like that with his eyes - he even watches TV that way. Still, it's something else to worry about for now!
So, prayers for clean head CT scan would be appreciated! They've been working thus far - keep them coming!!
They were concerned because one of his eyes wasn't as open as the other eye and that eye was also appearing a bit red. They wanted to be sure it was nothing and so the CT scan was ordered.
I'm not sure when we'll get the results back. In my heart I don't think there's anything to worry about. He was still pretty groggy yesterday and he's always been one to do things like that with his eyes - he even watches TV that way. Still, it's something else to worry about for now!
So, prayers for clean head CT scan would be appreciated! They've been working thus far - keep them coming!!
Friday, May 1, 2009
Embolization #2 - A Success!
The embolization experience this go around has been much better and much less stressful than it was 7 weeks ago.
We were told to arrive at 8am and the procedure was scheduled for 10. Chris's blood pressure, as great as it was last Thursday, has been high since his pre-surgical appointment on Monday. We were actually starting to get nervous that they would cancel us because despite the constant changes to his blood pressure medication this week, his blood pressure was still high yesterday.
When we got here this morning, his blood pressure was 159/93 - and we thought for sure that we were going to be walking back out the door. But 10 minutes later, they checked it again (in the other arm) and it was 152/84 - we were a go!
Chris and I were escorted down to the 2nd floor where the embolization would occur, and Jerry and Zita went down to the lobby to wait for me. Chris was quickly taken into the procedure room, we said our goodbyes as we each fought off tears and I went off to find his parents to wait.
Dr. G. came out around 12:30 to say that while the embolization went VERY well (YEAH!!) his blood pressure did in fact rise and they were unable to remove the catheter (at this point we were fearing a repeat of last time). But unlike last time, Dr. G. came out again 30 minutes later to say that they were able to get his blood pressure low enough to be able to remove the catheter and that they'd be moving him up to recovery shortly!
By 1:30 he was in recovery, we saw him around 3pm and while still groggy, he was MUCH more alert than he was the last time.
The best news of all . . . . Dr. G. thinks Chris may be able to go home on Sunday!! Sunday, for those of you who don't remember, is Shane's 3rd birthday! Nothing would make us happier than the spend the day together, at home, as a family! So here's to a speedy recovery!
Many thanks for all the support and prayers. They truly are what carries us through.
We were told to arrive at 8am and the procedure was scheduled for 10. Chris's blood pressure, as great as it was last Thursday, has been high since his pre-surgical appointment on Monday. We were actually starting to get nervous that they would cancel us because despite the constant changes to his blood pressure medication this week, his blood pressure was still high yesterday.
When we got here this morning, his blood pressure was 159/93 - and we thought for sure that we were going to be walking back out the door. But 10 minutes later, they checked it again (in the other arm) and it was 152/84 - we were a go!
Chris and I were escorted down to the 2nd floor where the embolization would occur, and Jerry and Zita went down to the lobby to wait for me. Chris was quickly taken into the procedure room, we said our goodbyes as we each fought off tears and I went off to find his parents to wait.
Dr. G. came out around 12:30 to say that while the embolization went VERY well (YEAH!!) his blood pressure did in fact rise and they were unable to remove the catheter (at this point we were fearing a repeat of last time). But unlike last time, Dr. G. came out again 30 minutes later to say that they were able to get his blood pressure low enough to be able to remove the catheter and that they'd be moving him up to recovery shortly!
By 1:30 he was in recovery, we saw him around 3pm and while still groggy, he was MUCH more alert than he was the last time.
The best news of all . . . . Dr. G. thinks Chris may be able to go home on Sunday!! Sunday, for those of you who don't remember, is Shane's 3rd birthday! Nothing would make us happier than the spend the day together, at home, as a family! So here's to a speedy recovery!
Many thanks for all the support and prayers. They truly are what carries us through.
Monday, April 27, 2009
Happy Birthday To You!
Just a few more video clips of Shane, these from singing "Happy Birthday" to him on Saturday! This kid LOVES him some attention!! Is he his Daddy's boy or what!
(Both taken on "Aunt Tate's" cell phone - thanks Aunt Kate!)
Friday, April 24, 2009
Good News/Surprising News/Birthday News
So our trip to Sloan-Kettering yesterday was a success!
We left the house at 5am, by 7 we had parked the car at the hospital and had walked over to the imaging center on 55th St. Chris had his CT scan around 8:30, by 9 we were walking back to the hospital, he had his lab work done at 9:30 and by 10:45 we were sitting at a desk across from Dr. G!!!
Results from yesterday's scan look great! Lot's of big black holes in his liver where tumor used to reside! And Dr. G. kept using the word "Fantastic!" when looking at all his blood work results!
We also got some surprising news! The embolization for the left side of Chris's liver is scheduled for next Friday, May 1. We never expected it to happen so quickly - we thought it'd be another week or two after that before we'd be back there for round 2! But, Dr. G. had an opening in his schedule and his favorite room was available, so we jumped on it! Dr. G is pretty confident that this embolization will be much easier on Chris (and on him!). The left side of the liver is smaller than the right side anyway, which makes it a bit easier, but there's also far less tumor on the left side than what had been on the right side. Another good thing, is that Chris now has more healthy liver tissue, which should also make recovery easier. AND, because Chris's blood pressure issues seem to be under control (124/76 yesterday, yeah!!) we shouldn't have the complications like we had last time either!
LOTS of great news yesterday!!
The only "downside" to all of this (and in the grand scheme of things, it's really not so downside!!) is that Shane's 3rd birthday is next Sunday (the 3rd) and we were going to have his party then. Since we'll now be in the hospital next weekend, we decided to move his party up to tomorrow instead!!! Soooooo, stay tuned for lots of fun pictures on Monday! Until then, here's his adorable birthday invitation - thanks to Stacey at Park Thomas Design!!
Tuesday, April 21, 2009
Leukocytoclastic Vasculitis
Say that three times fast!!!
That's the diagnosis (after biopsy) on the rash Chris had on his legs and ankles that, eventually, caused the swelling in his feet (apparently, my husband can't just get a good old fashioned rash that is taken care of with a little cortisone cream!)
Basically, that big, long, clinical name translates to "rash caused by bacterial infection". In his case, it was likely caused from the toxins that the dying tumors (from the embolization) are giving off.
A few days on 10mg of prednisone, and he was just about as good as new!
He had a follow up with the dermatologist today and after a few more doses of the prednisone, he should be good to go!
Other than the rash, he's been doing GREAT lately! Eating well, sleeping a (TINY) bit better, pain is more manageable, he's playing with Shane and my boys have even claimed back their mornings together (even if it is just 2 mornings a week right now - we'll take it!!) and he's only crawling into bed at night now! I can't even begin to describe how great it is to see Chris looking so good. He's come a long way since March 9 (day before his embolization) and I know he'll be doing even better after the second embolization is done!
We're well on our way to claiming our life back!!!!!!!
We're back to Sloan-Kettering on Thursday for a follow up CT scan and to meet with Dr. G. regarding the embolization Chris had in March and on, hopefully, scheduling the one for the left side of his liver in another week or two.
Prayers are always welcome around here!!
That's the diagnosis (after biopsy) on the rash Chris had on his legs and ankles that, eventually, caused the swelling in his feet (apparently, my husband can't just get a good old fashioned rash that is taken care of with a little cortisone cream!)
Basically, that big, long, clinical name translates to "rash caused by bacterial infection". In his case, it was likely caused from the toxins that the dying tumors (from the embolization) are giving off.
A few days on 10mg of prednisone, and he was just about as good as new!
He had a follow up with the dermatologist today and after a few more doses of the prednisone, he should be good to go!
Other than the rash, he's been doing GREAT lately! Eating well, sleeping a (TINY) bit better, pain is more manageable, he's playing with Shane and my boys have even claimed back their mornings together (even if it is just 2 mornings a week right now - we'll take it!!) and he's only crawling into bed at night now! I can't even begin to describe how great it is to see Chris looking so good. He's come a long way since March 9 (day before his embolization) and I know he'll be doing even better after the second embolization is done!
We're well on our way to claiming our life back!!!!!!!
We're back to Sloan-Kettering on Thursday for a follow up CT scan and to meet with Dr. G. regarding the embolization Chris had in March and on, hopefully, scheduling the one for the left side of his liver in another week or two.
Prayers are always welcome around here!!
Monday, April 20, 2009
Sesame Street
So we had ourselves a FANTASTIC 4-day family weekend (more on that tomorrow)!!!
We kicked things off on Friday morning with a trip to the Arena at Harbor Yards to watch us some Sesame Street Live!! Our little guy had the best time and is STILL pouring through his $12 program!!!
***Happy Birthday, Nana!!! I actually FORGOT to wish my own Mom a Happy Birthday on the phone this morning (can you believe that!! Pass over the daughter of the year award, for sure!!!), so I HAD to give her a shout out on the blog to make up for it! We love you!!
We kicked things off on Friday morning with a trip to the Arena at Harbor Yards to watch us some Sesame Street Live!! Our little guy had the best time and is STILL pouring through his $12 program!!!
***Happy Birthday, Nana!!! I actually FORGOT to wish my own Mom a Happy Birthday on the phone this morning (can you believe that!! Pass over the daughter of the year award, for sure!!!), so I HAD to give her a shout out on the blog to make up for it! We love you!! Tuesday, April 14, 2009
With A Vengeance
Once Shane gathered all the eggs from his Easter egg "hunt" in the backyard, he went into Nana's living room and ripped open those eggs with a vengeance!! He couldn't possibly have eaten any more puffs or Cheerios in one day if he had wanted to!
If you haven't seen the videos of him collecting the eggs, watch those first!
If you haven't seen the videos of him collecting the eggs, watch those first!
Monday, April 13, 2009
Easter Joy
He lights up our entire world, in more ways than one, and it was SO great to watch him be a kid yesterday! He completely enjoyed his easter egg "hunt" that Aunt Kate set up in Nana's backyard! Here's the proof!
(Recorded on Aunt Kate's cell phone):
(Recorded on Aunt Kate's cell phone):
The Latest With Chris
Chris has had an awful rash on his legs for almost 2 weeks now. Big red spots, slightly raised, not itchy, that were finally starting to go away and then Thursday night we noticed some swelling in one of his achilles and the next morning there was a HUGE spot where the swelling had been. Both of his feet have been pretty swollen all weekend and walking is a bit difficult and painful. He did go to a Walk-in clinic on Saturday and they didn't have a clue as to what it could've been. Hopefully he'll get in to see Dressler today and get some relief.
Never a dull moment!
The irony here, is that he had a pretty great weekend otherwise! Liver pain and abdonimal pain were minimal, especially on Saturday, but he couldn't really enjoy it because of his feet! Poor guy!
We have our follow up with Sloan-Kettering next Thursday and we're still investigating what our next move will be. We'll either head back to Sloan for his 2nd embolization or head out to New Orleans to get another treatment plan reccomendation by the doctor's out there known as the "Dream Team" in the world of Carcinoid Cancer. We'll be sure to keep you all updated.
Keep us in your prayers!
Never a dull moment!
The irony here, is that he had a pretty great weekend otherwise! Liver pain and abdonimal pain were minimal, especially on Saturday, but he couldn't really enjoy it because of his feet! Poor guy!
We have our follow up with Sloan-Kettering next Thursday and we're still investigating what our next move will be. We'll either head back to Sloan for his 2nd embolization or head out to New Orleans to get another treatment plan reccomendation by the doctor's out there known as the "Dream Team" in the world of Carcinoid Cancer. We'll be sure to keep you all updated.
Keep us in your prayers!
Thursday, April 9, 2009
Getting Out
Even though it's not exactly warm yet, we'll take any increase in temperature we can get to get ourselves out of the house - it's been a LONG winter!
A few weeks ago we busted out and played out in the yard one night after work. This swing set may have taken 4 adults (+ 2 more to watch Shane!) an entire weekend to put together, but it was worth the effort! Shane LOVES the thing!
Taking a break to find a plane:
Happy Easter, everyone!!!
A few weeks ago we busted out and played out in the yard one night after work. This swing set may have taken 4 adults (+ 2 more to watch Shane!) an entire weekend to put together, but it was worth the effort! Shane LOVES the thing!
Taking a break to find a plane:
Happy Easter, everyone!!!Wednesday, April 8, 2009
A Call For Help
With our personal chef officially off duty for the first time in 6 months (see post below!) and with Chris being home on disability and needing to gain back some weight, not only for health reasons but to also increase his energy level, I'm in DESERATE need of dinner ideas and recipes!
Ideally, I'm looking for things that can quickly and easily be thrown together the night before and that Chris can toss into the oven an hour or two before Shane and I get home.
Good,wholesome meals that are easy on the digestive system. In other words, nothing too spicey, no raw veggies, and no super thick cream sauces. Protein is our top priority (that, and it has to be yummy enough for an almost 3 year old to eat)!
We'd welcome any ideas or recipes you have! Feel free to email them to me at koconnor1009@hotmail.com
We'll be forever in your debt!!
Ideally, I'm looking for things that can quickly and easily be thrown together the night before and that Chris can toss into the oven an hour or two before Shane and I get home.
Good,wholesome meals that are easy on the digestive system. In other words, nothing too spicey, no raw veggies, and no super thick cream sauces. Protein is our top priority (that, and it has to be yummy enough for an almost 3 year old to eat)!
We'd welcome any ideas or recipes you have! Feel free to email them to me at koconnor1009@hotmail.com
We'll be forever in your debt!!
On The Road (Again?)
When the two of you pulled into our driveway that Friday night six months ago, each of you in a separate car packed to the gill with all of your favorite belongings, exhausted from a day of packing, lawyers and handing over your condo keys, none of us ever saw your planned two week stay with us turning into 6 months.
But as luck would have it, your condo sold at just the right moment, for 5 days later would find Chris in the ER and a week after that would find us with a cancer diagnosis. We hope you both know how much we appreciated (and needed) your support at that time. How great it was to come home from that fateful doctor appointment to hear you say you'd be staying with us for a while, to know that we weren't alone.
We're extremely grateful to both of you for all you've done for us these last 6 months. I think it's pretty safe to say that we wouldn't be where we are today without the support and the sacrifices you gave, and made, for us. There are no words to express our gratitude to you for giving up your own lives for 6 months to guarantee the safety and well being of ours.
While you are (finally!) making your way down to Florida today to re-start your life, know how much you're missed up here. And know we're okay. And that we'll continue to be okay.
With much love and appreciation . . . .
But as luck would have it, your condo sold at just the right moment, for 5 days later would find Chris in the ER and a week after that would find us with a cancer diagnosis. We hope you both know how much we appreciated (and needed) your support at that time. How great it was to come home from that fateful doctor appointment to hear you say you'd be staying with us for a while, to know that we weren't alone.
We're extremely grateful to both of you for all you've done for us these last 6 months. I think it's pretty safe to say that we wouldn't be where we are today without the support and the sacrifices you gave, and made, for us. There are no words to express our gratitude to you for giving up your own lives for 6 months to guarantee the safety and well being of ours.
While you are (finally!) making your way down to Florida today to re-start your life, know how much you're missed up here. And know we're okay. And that we'll continue to be okay.
With much love and appreciation . . . .
Tuesday, April 7, 2009
Earning His Keep
(Almost) 3 isn't too young to put him to work, is it??
Aunt "Sue-bus", I suppose this will be going into your "book"???!!! :-)
Helping Papa:
Getting pointers from Daddy:
Good job, Buddy!!!
**Note: Despite how dead our grass was (okay, is), we would never have our little guy doing any kind of manual labor out in the yard - not yet anyway! He pulled the seed spreader out of the shed himself (swear!!). I think he thought it was one of his push toys! Regardless, he had TONS of fun pushing that thing around the yard!!
Aunt "Sue-bus", I suppose this will be going into your "book"???!!! :-)
Helping Papa:
Getting pointers from Daddy:
Good job, Buddy!!!
**Note: Despite how dead our grass was (okay, is), we would never have our little guy doing any kind of manual labor out in the yard - not yet anyway! He pulled the seed spreader out of the shed himself (swear!!). I think he thought it was one of his push toys! Regardless, he had TONS of fun pushing that thing around the yard!!Monday, April 6, 2009
A (New) Old Favorite
Stacey Thomas, a very talented designer over at Park-Thomas Design has been helping me design Shane's 3rd birthday invite (I'll be sure to share the design once they've been received by family). With Stacey's help, we decided to use this cropped version of one of my all-time favorites! Thanks, Stacey!
A Boy & His Dogs
Our son SO thinks that he is a canine! Most days, I'm surprised he's not walking around on all four like Kylee and Zoe do!
In the interest of full disclosure, when I was pregnant with Shane, Chris and I were a bit concerned about how the dogs, especially Zoe, would react to having a baby in the house. I mean, our girls had been our babies all along, right until we were blessed with a little blue bundle of our own.
Both Kylee and Zoe are rescue dogs, and both have their "issues". Not knowing what their full backgrounds are made it difficult to envision how they'd handle having a little one around. Kylee has to be the center of attention at all times, so naturally, we were concerned about how she would handle playing second fiddle for a while! And Zoe, poor Zoe. She was abused by her previous owner and has always been skittish around strangers - mainly men and children.
But, from the moment we brought our little guy home, our girls took to him like glue! Sure they have their moments when they've had enough of him and I'm sure they're wishing he'd just disappear for a while (don't all siblings?!), but ultimately, they love him - immensely. They've taken him in like he's one of their own and Chris and I couldn't be happier!
I mean seriously, could they be having any more fun together!! Just take a look at his face!!
Yeah, I'm talking about you Buddy!!
More tomorrow!
In the interest of full disclosure, when I was pregnant with Shane, Chris and I were a bit concerned about how the dogs, especially Zoe, would react to having a baby in the house. I mean, our girls had been our babies all along, right until we were blessed with a little blue bundle of our own.
Both Kylee and Zoe are rescue dogs, and both have their "issues". Not knowing what their full backgrounds are made it difficult to envision how they'd handle having a little one around. Kylee has to be the center of attention at all times, so naturally, we were concerned about how she would handle playing second fiddle for a while! And Zoe, poor Zoe. She was abused by her previous owner and has always been skittish around strangers - mainly men and children.
But, from the moment we brought our little guy home, our girls took to him like glue! Sure they have their moments when they've had enough of him and I'm sure they're wishing he'd just disappear for a while (don't all siblings?!), but ultimately, they love him - immensely. They've taken him in like he's one of their own and Chris and I couldn't be happier!
I mean seriously, could they be having any more fun together!! Just take a look at his face!!Yeah, I'm talking about you Buddy!!
More tomorrow!Friday, April 3, 2009
A Day At The Park
There's an elementary school, literally down the street from us, with a playground that Shane loves!
Often, on the weekends, we'll take a stroll up to the school and let Shane run around in the ball fields behind the school or play on the playground equipment for a while. It's a good way to get us all out of the house for a bit.
These snapshots were taken about a week and a half after Chris's embolization. Standing completely upright was still a bit tough for him and he was still in some considerable pain, but still - he knew getting out of the house would be good for him - and he was right! We all had a fantastic time playing at the school, as usual!
"Come on, Daddy! Over here!"
Curiosity still gets the best of him!!
Often, on the weekends, we'll take a stroll up to the school and let Shane run around in the ball fields behind the school or play on the playground equipment for a while. It's a good way to get us all out of the house for a bit.
These snapshots were taken about a week and a half after Chris's embolization. Standing completely upright was still a bit tough for him and he was still in some considerable pain, but still - he knew getting out of the house would be good for him - and he was right! We all had a fantastic time playing at the school, as usual!
"Come on, Daddy! Over here!"
Curiosity still gets the best of him!!
Thursday, April 2, 2009
Sick
Chris and I went to yet another doctor appointment yesterday, but this time it was the pediatrician! Our little guy has yet another ear infection!
He started with a runny nose on Tuesday morning and after a bad night of sleep Tuesday night, we knew something was up - so we made the call to schedule an appointment for an ear check. Sure enough, left ear was infected!
After a few rounds of antibiotics yesterday, and an earful of the "numbing drops" that the pedi gave us, our little guy had a much better afternoon and night and was doing better already when he woke up this morning. Apparently, dull moments aren't allowed in our house!!
I've got tons of photos at home waiting to be edited, but thought I'd share these 2 quick snaps from Aunt Kate's birthday on Sunday. Our kid is such a ham!!
This kid L-O-V-E-S attention!! (Have I mentioned just how much he is his father's son??!!) Anytime anyone sings the "Happy Birthday" song, Shane is convinced it's for him - even if he's in another room. See how much he eats this stuff up!!!
More tomorrow, promise!
Aunt Trae, it was great to have you here for a few days - we're SO glad you made the trip, despite being sick - what a trooper!!! Shane had a fantastic time and there's no doubt that he's going to miss you - we all will! Hope you have a safe flight home and we're already looking forward to your next visit!!
He started with a runny nose on Tuesday morning and after a bad night of sleep Tuesday night, we knew something was up - so we made the call to schedule an appointment for an ear check. Sure enough, left ear was infected!
After a few rounds of antibiotics yesterday, and an earful of the "numbing drops" that the pedi gave us, our little guy had a much better afternoon and night and was doing better already when he woke up this morning. Apparently, dull moments aren't allowed in our house!!
I've got tons of photos at home waiting to be edited, but thought I'd share these 2 quick snaps from Aunt Kate's birthday on Sunday. Our kid is such a ham!!
This kid L-O-V-E-S attention!! (Have I mentioned just how much he is his father's son??!!) Anytime anyone sings the "Happy Birthday" song, Shane is convinced it's for him - even if he's in another room. See how much he eats this stuff up!!!
More tomorrow, promise!Aunt Trae, it was great to have you here for a few days - we're SO glad you made the trip, despite being sick - what a trooper!!! Shane had a fantastic time and there's no doubt that he's going to miss you - we all will! Hope you have a safe flight home and we're already looking forward to your next visit!!
Wednesday, April 1, 2009
Better Already
Both my blogging and Chris!
And here's some proof (taken on St. Patrick's Day)! Looking good just one week after the embolization! Now we just need to get some weight back on him!
We had a house full of company yesterday, otherwise my new "blog promise" would've gotten under way a day sooner!
Here's a few more snapshots from St. Patrick's Day. $5 to anyone who can successfully explain to Shane that his electronic ride-on is an outdoor toy only . . .
Can't you just see the devil in his eyes! This kid is SO plotting his next "attack"!!
And here's some proof (taken on St. Patrick's Day)! Looking good just one week after the embolization! Now we just need to get some weight back on him!
We had a house full of company yesterday, otherwise my new "blog promise" would've gotten under way a day sooner!
Here's a few more snapshots from St. Patrick's Day. $5 to anyone who can successfully explain to Shane that his electronic ride-on is an outdoor toy only . . .
Can't you just see the devil in his eyes! This kid is SO plotting his next "attack"!!
Monday, March 30, 2009
Back In The Saddle
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.
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.
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!
Friday, February 27, 2009
No See Mama
That's Shane's latest favorite expression - "No see, Mama, no see" (Translation - "I can't find it" - whether he can or not)
Example 1:
"Shane, where's the Mickey Mouse Clubhouse DVD?"
"No see, Mama, no see"
Example 2:
"Shane, where's the sippy cup you're holding?"
"No see, Mama, no see"
He's a little smarty pants this one! He's figuring out just which buttons he can push and get away with.
I swear, sometimes, you can almost see the devil in his eye!
He's our comic relief these days. We'd be lost without our little guy!
Example 1:
"Shane, where's the Mickey Mouse Clubhouse DVD?"
"No see, Mama, no see"
Example 2:
"Shane, where's the sippy cup you're holding?"
"No see, Mama, no see"
He's a little smarty pants this one! He's figuring out just which buttons he can push and get away with.
I swear, sometimes, you can almost see the devil in his eye!
He's our comic relief these days. We'd be lost without our little guy!
Thursday, February 26, 2009
Best Laid Plans
We're home this morning. Chris's embolization procedure got canceled yesterday at, literally, the last minute. He was "suited" up, he had his IV and all the necessary infusions and he was sitting outside the procedure room when the doctor realized that his blood pressure was still too high. It would've been dangerous to do the procedure yesterday, so they sent us home. To say we're disappointed is an understatement, but we also don't want to do anything that would put Chris at risk.
Right now, we're hoping to re-schedule the procedure in a few weeks. We also have an appointment with a Dr. at Sloan-Kettering on March 4 to talk about how to get his BP down for good this time so that this doesn't happen again.
We thank all of you for your prayers and good wishes yesterday and all we can do is hope you'll offer them again when we re-schedule. We'll keep you all posted.
Right now, we're hoping to re-schedule the procedure in a few weeks. We also have an appointment with a Dr. at Sloan-Kettering on March 4 to talk about how to get his BP down for good this time so that this doesn't happen again.
We thank all of you for your prayers and good wishes yesterday and all we can do is hope you'll offer them again when we re-schedule. We'll keep you all posted.
Wednesday, February 25, 2009
The First Day Of Forever
It's 5:25 in the morning and I'm (finally) sitting at the desk in our hotel room in New York City. Actually, I'm sitting at the desk in the living room of our suite (yeah for free upgrades!!). Today is the day that Chris regains control of his life. Today is the day of his first embolization procedure to kill off the tumors on the right side of his liver. Today is the day that the pain starts to go away. The day where he can begin to function again without having to take the pain pills. The day where he can pick up and play with Shane the way he wants to. Today is our new first day of forever.
His embolization is scheduled for 11am. We have to be at Memorial Hospital (the main "campus"of Sloan-Kettering) at 9am. Doctors are anticipating the procedure to take about 2 hours, and then Chris will be in ICU for 4 hours afterwards. After that, they'll move him to his room and keep an eye on him for a few days. We hope to be back home sometime on Saturday, but we'll take that as it comes.
I won't get a chance to update the blog again until I get back to the hotel tonight, but I promise to update as soon as I can and let you all know how Chris is doing.
Your prayers today would be welcomed. Thank you for continuing to be our strength, our support. We love you all.
Friday, February 20, 2009
Getting Through The Road Blocks
I know it's been a few days since our last post - sorry about that! It's been a hectic week for us (again!)
Chris went into NY on Tuesday for his pre-op appointment and to meet with the interventional radiologist that will be doing his embolization on Wednesday. Chris felt very comfortable with the Dr. and liked him a great deal. He's pretty pumped to be able to do this procedure on Chris, being that he's so young. He said he'll really be able to help him out and, as a doctor, that's what he strives for.
On Wednesday, they'll do the right side of his liver and he'll then go back in about 3 months to have the left side done.
We have, however, hit a little bit of a bump (surprise, surprise - I know!). Since our Feb. 2 appointment with Dr D. Chris's blood pressure has been up (150/100 - 170/100) and Sloan won't do the embolization procedure on him with his BP that high. They wanted to get him in to see a cardiologist on Tuesday, but couldn't fit him into anyone's schedule. In the interest of saving ourselves another trip to NY, I called Dr. D's office and they recommended a local cardiologist for us to see. So, I gave them a call and we saw the cardio on Wednesday afternoon. They ran a few baseline tests, gave us a prescription for BP medication and then had us schedule a follow up on Monday (2/23) for an echocardiogram (ultrasound) and BP re-check. If the meds have done their job (which they doctors seem to think will happen) then Chris will be all set for Wed, but, if his BP is still high and can't be regulated in 2 days, then we may have to reschedule - but we'll cross that bridge if we come to it. Right now, we're all optimistic that Wednesday will be a "go"!
Also, we did get the results back from the stomach biopsy that the GI doc did during Chris's endoscopy last week, and it did come back as a carcinoid (tumor). There is a chance that this could be the primary tumor, but more likely it's probably spread. Still, we're looking good and we'll address that tumor after the embolization procedure next week.
Keep those prayers coming - prayers for strength and prayers for healing. They're the fuel that's keeping us going!!
Chris went into NY on Tuesday for his pre-op appointment and to meet with the interventional radiologist that will be doing his embolization on Wednesday. Chris felt very comfortable with the Dr. and liked him a great deal. He's pretty pumped to be able to do this procedure on Chris, being that he's so young. He said he'll really be able to help him out and, as a doctor, that's what he strives for.
On Wednesday, they'll do the right side of his liver and he'll then go back in about 3 months to have the left side done.
We have, however, hit a little bit of a bump (surprise, surprise - I know!). Since our Feb. 2 appointment with Dr D. Chris's blood pressure has been up (150/100 - 170/100) and Sloan won't do the embolization procedure on him with his BP that high. They wanted to get him in to see a cardiologist on Tuesday, but couldn't fit him into anyone's schedule. In the interest of saving ourselves another trip to NY, I called Dr. D's office and they recommended a local cardiologist for us to see. So, I gave them a call and we saw the cardio on Wednesday afternoon. They ran a few baseline tests, gave us a prescription for BP medication and then had us schedule a follow up on Monday (2/23) for an echocardiogram (ultrasound) and BP re-check. If the meds have done their job (which they doctors seem to think will happen) then Chris will be all set for Wed, but, if his BP is still high and can't be regulated in 2 days, then we may have to reschedule - but we'll cross that bridge if we come to it. Right now, we're all optimistic that Wednesday will be a "go"!
Also, we did get the results back from the stomach biopsy that the GI doc did during Chris's endoscopy last week, and it did come back as a carcinoid (tumor). There is a chance that this could be the primary tumor, but more likely it's probably spread. Still, we're looking good and we'll address that tumor after the embolization procedure next week.
Keep those prayers coming - prayers for strength and prayers for healing. They're the fuel that's keeping us going!!
Monday, February 16, 2009
From Shane's Mouth To God's Ears
Last night. like every night, I told Shane to climb into bed so that we could say our prayers. And last night, like every night, we would pray for Daddy to get well, to be healthy and happy again. We would pray for a cure.
But last night, unlike every night, Shane beat me to it. I turned away from the bed for a moment to get something off his dresser and as I turned back around, Shane was lying on his belly, on his bed, with his little 2 year old hands folded in front of him. And then I heard the most beautiful words he's ever said:
"Dada, pease, no more boo-boos"
I'm hoping that prayer took an express ride on an Angel's wing, right on up to God.
But last night, unlike every night, Shane beat me to it. I turned away from the bed for a moment to get something off his dresser and as I turned back around, Shane was lying on his belly, on his bed, with his little 2 year old hands folded in front of him. And then I heard the most beautiful words he's ever said:
"Dada, pease, no more boo-boos"
I'm hoping that prayer took an express ride on an Angel's wing, right on up to God.
Friday, February 13, 2009
Embolization Is A Go!
We got word yesterday that Chris is in fact a candidate for the hepatic embolization procedure - this is fantastic news!
The procedure is scheduled for Wednesday, February 25 at Sloan. He'll spend a few days in the hospital and will hopefully be coming home sometime that weekend.
Fingers crossed that things continue to go well and that the good news keeps on coming!
Dr. Meng also gave Chris a prescription for anti-nasuea medication when we were there on Wednesday, which seems to be helping a bit with all of his stomach discomfort! More good news, but we're going to continue holding out until he's completely pain free before we start throwing our hats up in the air!!
What a difference a week can make . . .
The procedure is scheduled for Wednesday, February 25 at Sloan. He'll spend a few days in the hospital and will hopefully be coming home sometime that weekend.
Fingers crossed that things continue to go well and that the good news keeps on coming!
Dr. Meng also gave Chris a prescription for anti-nasuea medication when we were there on Wednesday, which seems to be helping a bit with all of his stomach discomfort! More good news, but we're going to continue holding out until he's completely pain free before we start throwing our hats up in the air!!
What a difference a week can make . . .
Thursday, February 12, 2009
It's Been A Good Week
Our trip to Sloan-Kettering yesterday was a good one. We didn't get any unexpected, or surprising, news - which is always a good thing when you're dealing with cancer!
Dr. Meng did send Chris for a "detailed" liver CT scan up at the main hospital. This scan will let the interventional radiologists at Sloan know if Chris a candidate for a procedure call a hepatic embolization. Essentially, it's a procedure that stops the blood flow to the tumors in the liver. The idea is that without blood, the tumor's can't continue to grow. The hope is that the tumors will begin to shrink and will also prevent new tumors from growing for a good period of time.
They also gave Chris a prescription for an anti-nausea medication, which we're hoping will help with his stomach pain/discomfort, which is still his biggest complaint.
Both Dr. Meng and Dr. D. feel that the stomach issues could be a side effect from the monthly injections he's been receiving. Dr. Meng suggested lowering the dosage of that monthly shot to see if that helps to alleviate some of Chris's symptoms.
So, all in all, this has been a good week for us! The biggest reason for that is due to the amazing support system we have in all of you and due to all of the prayers you've been sending up for Chris. We can't thank you enough for them and hope that you'll keep them coming!
Our next steps are waiting on the stomach biopsy results from the Endoscopy on Tuesday and waiting to hear if Chris is an embolization candidate. From there, we'll figure out our next steps to getting Chris feeling A LOT better, and back on track to that long, happy, normal life that we plan on living together!!
***And on a side note, if you've been wondering where all the pictures have been lately, my adorable toddler dropped my camera and shattered my 50mm lens last week. Having to go back to using the kit lens makes my heart weep. I suppose I'll eventually suck it up and throw that bad boy back on my camera, but until that 50mm has been replaced, photos might be a bit scarce for a little while!
Dr. Meng did send Chris for a "detailed" liver CT scan up at the main hospital. This scan will let the interventional radiologists at Sloan know if Chris a candidate for a procedure call a hepatic embolization. Essentially, it's a procedure that stops the blood flow to the tumors in the liver. The idea is that without blood, the tumor's can't continue to grow. The hope is that the tumors will begin to shrink and will also prevent new tumors from growing for a good period of time.
They also gave Chris a prescription for an anti-nausea medication, which we're hoping will help with his stomach pain/discomfort, which is still his biggest complaint.
Both Dr. Meng and Dr. D. feel that the stomach issues could be a side effect from the monthly injections he's been receiving. Dr. Meng suggested lowering the dosage of that monthly shot to see if that helps to alleviate some of Chris's symptoms.
So, all in all, this has been a good week for us! The biggest reason for that is due to the amazing support system we have in all of you and due to all of the prayers you've been sending up for Chris. We can't thank you enough for them and hope that you'll keep them coming!
Our next steps are waiting on the stomach biopsy results from the Endoscopy on Tuesday and waiting to hear if Chris is an embolization candidate. From there, we'll figure out our next steps to getting Chris feeling A LOT better, and back on track to that long, happy, normal life that we plan on living together!!
***And on a side note, if you've been wondering where all the pictures have been lately, my adorable toddler dropped my camera and shattered my 50mm lens last week. Having to go back to using the kit lens makes my heart weep. I suppose I'll eventually suck it up and throw that bad boy back on my camera, but until that 50mm has been replaced, photos might be a bit scarce for a little while!
Tuesday, February 10, 2009
Endoscopy
Chris is home sleeping off the sedatives from his endoscopy this afternoon.
The good news is that the small intestines were clear!
There was some inflammation in the stomach, that, really, could be any number of things (including cancer), so they biopsied it and we should know more by the end of the week.
Tomorrow we're off to Sloan Kettering in NYC to see Dr. Meng again. We'll figure out what our next steps are in regards to treatment to keep those liver tumors from growing any more and we'll see what they can make (if anything) from the pictures/reports from today.
Continued prayers are welcomed always!
We'll be sure to update you all and let you know how tomorrow goes.
The good news is that the small intestines were clear!
There was some inflammation in the stomach, that, really, could be any number of things (including cancer), so they biopsied it and we should know more by the end of the week.
Tomorrow we're off to Sloan Kettering in NYC to see Dr. Meng again. We'll figure out what our next steps are in regards to treatment to keep those liver tumors from growing any more and we'll see what they can make (if anything) from the pictures/reports from today.
Continued prayers are welcomed always!
We'll be sure to update you all and let you know how tomorrow goes.
Friday, February 6, 2009
Our Visit With The GI Doc
We met with the GI doctor this morning and won't really have any additional information until Chris has an endoscopy on Tuesday.
Dr. Levine said it may be tumor growth, but it may also be an ulcer or a number of other things.
We'll let you know what happens on Tuesday.
Please keep keeping Chris in your prayers!!
Dr. Levine said it may be tumor growth, but it may also be an ulcer or a number of other things.
We'll let you know what happens on Tuesday.
Please keep keeping Chris in your prayers!!
Thursday, February 5, 2009
Wednesday, February 4, 2009
Results
Dr. D. called this afternoon with the results from Chris's CT scan on Monday.
While it wasn't the best news, it could certainly be much worse.
There is some progression within the liver. In addition to that, the scan also showed some thickening of the small intestine. This may or may not be related to the cancer, but it is what's been causing Chris all the pain and it's also what has been making eating difficult for him.
So, the plan now is to see the GI doctor on Friday to address the thickening in the intestine. See if he can tell us what it is and how to fix it. Then, Dr. D. suggested we follow up with Sloan Kettering again so that we can find a way to stop the tumor growth in his liver. We are tentatively scheduled to go back to Sloan next Wednesday. We'll take it from there.
Continued prayers and good thoughts would be welcomed.
Thank you all for being our continued support system.
While it wasn't the best news, it could certainly be much worse.
There is some progression within the liver. In addition to that, the scan also showed some thickening of the small intestine. This may or may not be related to the cancer, but it is what's been causing Chris all the pain and it's also what has been making eating difficult for him.
So, the plan now is to see the GI doctor on Friday to address the thickening in the intestine. See if he can tell us what it is and how to fix it. Then, Dr. D. suggested we follow up with Sloan Kettering again so that we can find a way to stop the tumor growth in his liver. We are tentatively scheduled to go back to Sloan next Wednesday. We'll take it from there.
Continued prayers and good thoughts would be welcomed.
Thank you all for being our continued support system.
Monday, February 2, 2009
Our Visit With Dr. D.
We saw Dr. D. this morning for our monthly appointment. Chris got his injection and left with a sore right cheek!
While we were there, Chris also told Dr. D about the stomach problems he's been having. Pain when he eats, feeling bloated afterwards, etc. Dr. D. said it sounds like something is blocking his stomach, and while it could be a number of things, the two most likely would be a bowel obstruction or disease progression.
Chris is going for a CT scan this afternoon and we're meeting with the GI doctor on Friday morning. I imagine we'll have the results of the CT scan before then, however.
Please keep Chris in your prayers this afternoon, and throughout the week. We'll be sure to keep you all updated.
Many thanks and much love.
While we were there, Chris also told Dr. D about the stomach problems he's been having. Pain when he eats, feeling bloated afterwards, etc. Dr. D. said it sounds like something is blocking his stomach, and while it could be a number of things, the two most likely would be a bowel obstruction or disease progression.
Chris is going for a CT scan this afternoon and we're meeting with the GI doctor on Friday morning. I imagine we'll have the results of the CT scan before then, however.
Please keep Chris in your prayers this afternoon, and throughout the week. We'll be sure to keep you all updated.
Many thanks and much love.
Wednesday, January 28, 2009
Never A Dull Moment
Things have been busy over here, that's for sure!
Chris had a rough couple of days on Sunday and Monday, but I think we're finally on the upswing now.
It was this time last month that he had a few really bad days, too. Could just be a coincidence, or not, but we're taking note.
His stomach really bothers him a lot of the time, he has a hard time eating. We've made an appointment for next Friday with the GI doctor that Chris saw back in October when all of this started, hopefully he'll have some suggestions for us. We're going to consult with a nutritionist as well, and see what they have to say.
We go back to see Dr. D. on Monday for his next monthly injection and we'll run everything by him as well.
It's rough seeing him so down and out. The stomach/digestive issues just take a lot out of him - and I'm sure the stress he's feeling about his job doesn't help matters either.
Please continue to keep him in your prayers. We're still just three months into this and we're still trying to figure it all out. The prayers are good all around - body, mind and spirit - so keep them coming!!
Much love and appreciation . . .
Chris had a rough couple of days on Sunday and Monday, but I think we're finally on the upswing now.
It was this time last month that he had a few really bad days, too. Could just be a coincidence, or not, but we're taking note.
His stomach really bothers him a lot of the time, he has a hard time eating. We've made an appointment for next Friday with the GI doctor that Chris saw back in October when all of this started, hopefully he'll have some suggestions for us. We're going to consult with a nutritionist as well, and see what they have to say.
We go back to see Dr. D. on Monday for his next monthly injection and we'll run everything by him as well.
It's rough seeing him so down and out. The stomach/digestive issues just take a lot out of him - and I'm sure the stress he's feeling about his job doesn't help matters either.
Please continue to keep him in your prayers. We're still just three months into this and we're still trying to figure it all out. The prayers are good all around - body, mind and spirit - so keep them coming!!
Much love and appreciation . . .
Friday, January 23, 2009
Shane's First Hockey Game
So it may not have been the NY Rangers, but it was his first hockey game none the less!
A few weeks ago Dr. D's office called all 3 numbers that they had for us, trying to track us down. Let me tell you it's a bit nerve wracking when you realize your oncologist has called every number in the chart trying to find you! When we finally got in touch with each other we were relieved to hear that they were calling to offer us Dr. D's seats to the Soundtigers/Wolfpack game that Saturday! Dr. D. is the internist for the Soundtigers team, that is based in Bridgeport, they're the "minor league" team for the NY Islanders. As it turned out, this night they were playing the "minor league" team for the NY Rangers, the Hartford Wolfpack - how could we not go?!?!
So, at 6:30 at night, in the middle of a snow storm, we loaded our little family into the car and took off for the arena.
I think Shane's favorite part was watching the zambonie's clean the ice!! But we all had a great time and we were able to stay until 1/2 way through the 2nd period when Shane started to get tired (and cranky!)
Thanks, GramZ, for letting us take your point-and-shoot, so that we could capture these memories!!
Shane - in awe! Notice our first row seats!!!
My boys, my heart.
We bribed him to be good in-between periods by getting him a treat! He clenched that cup like it was the last drink on Earth!!
Chris -
Total plug for Land's End here, but check out his ADORABLE snow boots in this shot! The front of the boot is the face of a bear! How stinkin' cute is that?!?!
On our way out of the arena:
Can I also say that our kid looks pretty stinkin' cute in his Rangers jersey! Great gift Rich & Lauren - thanks again!!
A few weeks ago Dr. D's office called all 3 numbers that they had for us, trying to track us down. Let me tell you it's a bit nerve wracking when you realize your oncologist has called every number in the chart trying to find you! When we finally got in touch with each other we were relieved to hear that they were calling to offer us Dr. D's seats to the Soundtigers/Wolfpack game that Saturday! Dr. D. is the internist for the Soundtigers team, that is based in Bridgeport, they're the "minor league" team for the NY Islanders. As it turned out, this night they were playing the "minor league" team for the NY Rangers, the Hartford Wolfpack - how could we not go?!?!
So, at 6:30 at night, in the middle of a snow storm, we loaded our little family into the car and took off for the arena.
I think Shane's favorite part was watching the zambonie's clean the ice!! But we all had a great time and we were able to stay until 1/2 way through the 2nd period when Shane started to get tired (and cranky!)
Thanks, GramZ, for letting us take your point-and-shoot, so that we could capture these memories!!
Shane - in awe! Notice our first row seats!!!
My boys, my heart.
We bribed him to be good in-between periods by getting him a treat! He clenched that cup like it was the last drink on Earth!! Chris -
Total plug for Land's End here, but check out his ADORABLE snow boots in this shot! The front of the boot is the face of a bear! How stinkin' cute is that?!?!
On our way out of the arena:
Can I also say that our kid looks pretty stinkin' cute in his Rangers jersey! Great gift Rich & Lauren - thanks again!!
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