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!!!
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