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PS. Patricia in Georgia, it's relapsed neuroblastoma.
Showing posts with label Caringbridge. Show all posts
Showing posts with label Caringbridge. Show all posts
Tuesday, November 25, 2008
Thursday, April 06, 2006
THE BLESSING THAT IS CARINGBRIDGE
Kendrie -- Day 112 OT
Blaine -- countdown to radiation
Sorry for the delay in updating --- I just have to say, in my defense, doing this single parenting thing stinks. Not so much the manual labor; the feeding and bathing and chauffeuring them to and fro …. that's the easy part. It’s the being all things (mediator, cheerleader, band aid-applier, guidance counselor, homework helper, social coordinator, father figure, referee, sympathetic shoulder, etc) to all different people, 24/7, and trying to do it with a cheerful attitude and a smile on my face that I find tiring. Tiring? Shoot, I’m exhausted, and I’ve only been at it 48 hours! What happens when Blaine returns to Seattle for those five weeks of radiation??? I’ll never make it! So anyway, the first thing to go this week has been my late-night computer time, because heaven knows how crabby I get when I’m sleep-deprived, so I’m on self-imposed early bedtime, hence holdup #1 in updating this site.
Ironic that because of cancer, Blaine has not been deployed with the military, and now, because of cancer, he will be gone from us for five or six weeks, which I’m totally complaining about (and it hasn’t even started yet …. what does that say about my positive attitude?) Yet, given the hindsight of 20/20 vision, I would give back the cancer and take a six-month deployment for him --- in a second. Obviously, I am way too fickle (something Blaine has claimed for years, and might actually be right about!)
Anyway, on to my topic of the day -- Caringbridge blessings.
I hope that those of you who take the time to surf Caringbridge pages, whether it’s two or three favorite sites, or two or three dozen, and sign notes of encouragement in the guestbooks …. I would hope that you know how wonderful that support is to the families going through whatever comprises their personal trials. I would also hope that as a Caringbridge supporter, you get something in return; whether it’s a smile at a funny story, the joy of seeing a child you care about finish treatment and re-start their “normal” life, or the good feeling that comes with knowing you’ve helped make someone’s day a little brighter, just by stopping by and saying hello.
As for me, it’s a win-win situation. Actually, win-win-win-WIN! I receive happiness in following along on the sites of families I’ve come to care about, the satisfaction of knowing I can make someone’s day brighter by signing a guestbook and saying hi, the cheap therapy of using Kendrie’s site as my own, personal “Lie down on the Internet couch and vent about my feelings” remedy, and also, one of the biggest perks of all, the friendships we have made, both online and in person, through this service.
Georgia … specifically, the Atlanta area, has lots of really great social support organizations. Since we only live a few hours away, we’ve been able to take advantage and meet other families, who we’ve come to care about in a way I would never have understood prior to our induction into this crazy world of pediatric cancer.
Local (or psuedo-local) Caringbridge blessings:
Kendrie and our sweet friend Catie.
Our weekend Atlanta visit with Brandon's family.
Camp Sunshine circus with Madie, Camp Jack, and Jacob.
An Atlanta Braves game, courtesy of CureSearch, with Brady, Keegan, and lots of other kids.
North, south, east and west Caringbridge blessings:
Tyler from Oklahoma.
Jacob in New Mexico. (although he was still in Georgia when we met his family!)
The entire group of All-Kids who attended the Easter Egg Hunt and Egg Roll at the White House in DC, 2004.
Andrew from California.
Alexis from Minnesota, who we met at Give Kids the World in Florida.
And there are other blessings as well, that I didn’t get photos with, but whose families I’ve met, such as Molly from New York and Jill from Missouri.
Our latest CB blessing came on Saturday, in the form of Finn’s family, returning to Ohio from their vacation in Florida -- I just KNEW living right off I-75 would pay off some day! When I found out they would be traveling only a few miles from our house, I begged, pleaded and groveled until they agreed to visit. Good thing, too, because I **totally** am not above putting a magneto-tron-ometer force field around their car and setting up a giant magnet in our driveway, if I had to.
I have followed Finn’s CB site for quite some time, partly because he’s cute as a button, and partly because his mom Natalie cracks me up. She reminds me of ….. ME! and a little narcissism never hurt anyone, right? Sure enough, their family is just as great in person as I thought they would be. Although I don’t think Finn thought too highly of us, seeing as how we didn’t have a SINGLE Thomas the Tank Engine train in the entire house --- what is wrong with us? But we had a great visit and I completely want to move to Ohio to hang out with them some more. Shoot, I’d move to Ohio just to listen to Finn’s dad Eamonn talk, since he’s British and has that really cool accent. (You know us Americans are suckers for a cool accent.)
Declan and Kendrie, the only two kids we could get to willingly sit on the sofa and pose for a photo.
The kids actually had a great time playing together, not that you can really tell in this photo. Kellen, aka Mr. Cheerful McSunshine, had just been awakened and wasn't real cooperative. And Finn, well, what can I say? He was NOT feeling the love on the couch! But I still think he's adorable.
Yes, this is how we treat our children when we think no-one is looking. Sometimes we get lucky and spare change falls out of their pockets.
Thank you Rooney family, for extending your vacation (or more accurately, your I-75 Endurance Marathon) long enough to spend time with us!!!
Then sometimes, the blessing that is Caringbridge is bittersweet, as it was for me on Monday when I attended the Celebration of Life Service for Baby Jay. I had never attended a memorial service for a child before and quite frankly, I was a wreck. It was too easy to watch the wonderful slide show presentation they had of Jay’s life … and see those pictures of him in the early days of treatment, swollen from steroids, laying in a hospital bed … or later, photos of him bald …. and realize I have many similar photos of Kendrie while she was on treatment. You hear about a parent who loses a child, and the first thing to come to mind is “I just can’t imagine” when the truth of it is, any parent whose child has been diagnosed with cancer, CAN imagine.
Of course, cancer parents don’t have a monopoly on caring, as evidenced by the many, many wet eyes around me during the service. And the pain I felt sitting there was only a drop in the bucket compared to the ocean of sadness that I’m sure Jay’s parents are feeling. It was a really shitty reminder that while Kendrie has finished her treatment and we’ve moved on, pushing the fear of relapse to the back of our minds and living our lives in as normal, hectic, and chaotic a fashion as possible, cancer has marched on as well and is still claiming innocent children.
And that’s the other reason I haven’t felt like updating this site with rainbows and bunnies and funny stories this week, despite our great visit with Finn and his family. It seems almost insulting to the memory of Jay. Hmmm. Maybe we should substitute “fickle” for “dazed and confused”; might be more fitting, no?
Blaine -- countdown to radiation
Sorry for the delay in updating --- I just have to say, in my defense, doing this single parenting thing stinks. Not so much the manual labor; the feeding and bathing and chauffeuring them to and fro …. that's the easy part. It’s the being all things (mediator, cheerleader, band aid-applier, guidance counselor, homework helper, social coordinator, father figure, referee, sympathetic shoulder, etc) to all different people, 24/7, and trying to do it with a cheerful attitude and a smile on my face that I find tiring. Tiring? Shoot, I’m exhausted, and I’ve only been at it 48 hours! What happens when Blaine returns to Seattle for those five weeks of radiation??? I’ll never make it! So anyway, the first thing to go this week has been my late-night computer time, because heaven knows how crabby I get when I’m sleep-deprived, so I’m on self-imposed early bedtime, hence holdup #1 in updating this site.
Ironic that because of cancer, Blaine has not been deployed with the military, and now, because of cancer, he will be gone from us for five or six weeks, which I’m totally complaining about (and it hasn’t even started yet …. what does that say about my positive attitude?) Yet, given the hindsight of 20/20 vision, I would give back the cancer and take a six-month deployment for him --- in a second. Obviously, I am way too fickle (something Blaine has claimed for years, and might actually be right about!)
Anyway, on to my topic of the day -- Caringbridge blessings.
I hope that those of you who take the time to surf Caringbridge pages, whether it’s two or three favorite sites, or two or three dozen, and sign notes of encouragement in the guestbooks …. I would hope that you know how wonderful that support is to the families going through whatever comprises their personal trials. I would also hope that as a Caringbridge supporter, you get something in return; whether it’s a smile at a funny story, the joy of seeing a child you care about finish treatment and re-start their “normal” life, or the good feeling that comes with knowing you’ve helped make someone’s day a little brighter, just by stopping by and saying hello.
As for me, it’s a win-win situation. Actually, win-win-win-WIN! I receive happiness in following along on the sites of families I’ve come to care about, the satisfaction of knowing I can make someone’s day brighter by signing a guestbook and saying hi, the cheap therapy of using Kendrie’s site as my own, personal “Lie down on the Internet couch and vent about my feelings” remedy, and also, one of the biggest perks of all, the friendships we have made, both online and in person, through this service.
Georgia … specifically, the Atlanta area, has lots of really great social support organizations. Since we only live a few hours away, we’ve been able to take advantage and meet other families, who we’ve come to care about in a way I would never have understood prior to our induction into this crazy world of pediatric cancer.
Local (or psuedo-local) Caringbridge blessings:
Kendrie and our sweet friend Catie.
Our weekend Atlanta visit with Brandon's family.
Camp Sunshine circus with Madie, Camp Jack, and Jacob.
An Atlanta Braves game, courtesy of CureSearch, with Brady, Keegan, and lots of other kids.
North, south, east and west Caringbridge blessings:
Tyler from Oklahoma.
Jacob in New Mexico. (although he was still in Georgia when we met his family!)
The entire group of All-Kids who attended the Easter Egg Hunt and Egg Roll at the White House in DC, 2004.
Andrew from California.
Alexis from Minnesota, who we met at Give Kids the World in Florida.
And there are other blessings as well, that I didn’t get photos with, but whose families I’ve met, such as Molly from New York and Jill from Missouri.
Our latest CB blessing came on Saturday, in the form of Finn’s family, returning to Ohio from their vacation in Florida -- I just KNEW living right off I-75 would pay off some day! When I found out they would be traveling only a few miles from our house, I begged, pleaded and groveled until they agreed to visit. Good thing, too, because I **totally** am not above putting a magneto-tron-ometer force field around their car and setting up a giant magnet in our driveway, if I had to.
I have followed Finn’s CB site for quite some time, partly because he’s cute as a button, and partly because his mom Natalie cracks me up. She reminds me of ….. ME! and a little narcissism never hurt anyone, right? Sure enough, their family is just as great in person as I thought they would be. Although I don’t think Finn thought too highly of us, seeing as how we didn’t have a SINGLE Thomas the Tank Engine train in the entire house --- what is wrong with us? But we had a great visit and I completely want to move to Ohio to hang out with them some more. Shoot, I’d move to Ohio just to listen to Finn’s dad Eamonn talk, since he’s British and has that really cool accent. (You know us Americans are suckers for a cool accent.)
Declan and Kendrie, the only two kids we could get to willingly sit on the sofa and pose for a photo.
The kids actually had a great time playing together, not that you can really tell in this photo. Kellen, aka Mr. Cheerful McSunshine, had just been awakened and wasn't real cooperative. And Finn, well, what can I say? He was NOT feeling the love on the couch! But I still think he's adorable.
Yes, this is how we treat our children when we think no-one is looking. Sometimes we get lucky and spare change falls out of their pockets.
Thank you Rooney family, for extending your vacation (or more accurately, your I-75 Endurance Marathon) long enough to spend time with us!!!
Then sometimes, the blessing that is Caringbridge is bittersweet, as it was for me on Monday when I attended the Celebration of Life Service for Baby Jay. I had never attended a memorial service for a child before and quite frankly, I was a wreck. It was too easy to watch the wonderful slide show presentation they had of Jay’s life … and see those pictures of him in the early days of treatment, swollen from steroids, laying in a hospital bed … or later, photos of him bald …. and realize I have many similar photos of Kendrie while she was on treatment. You hear about a parent who loses a child, and the first thing to come to mind is “I just can’t imagine” when the truth of it is, any parent whose child has been diagnosed with cancer, CAN imagine.
Of course, cancer parents don’t have a monopoly on caring, as evidenced by the many, many wet eyes around me during the service. And the pain I felt sitting there was only a drop in the bucket compared to the ocean of sadness that I’m sure Jay’s parents are feeling. It was a really shitty reminder that while Kendrie has finished her treatment and we’ve moved on, pushing the fear of relapse to the back of our minds and living our lives in as normal, hectic, and chaotic a fashion as possible, cancer has marched on as well and is still claiming innocent children.
And that’s the other reason I haven’t felt like updating this site with rainbows and bunnies and funny stories this week, despite our great visit with Finn and his family. It seems almost insulting to the memory of Jay. Hmmm. Maybe we should substitute “fickle” for “dazed and confused”; might be more fitting, no?
Monday, October 25, 2004
“ROCKET MAN IS FLYING HOME!”
Week #11, LTM Therapy
OK, I freely admit it, I am a Caringbridge junkie. I have an obsessive need to check on “my” kids and will always make time to get a few hours’ worth of CB surfing each day, even if that means my family has to eat fast food, off paper plates, sitting on an un-vacuumed floor, wearing dirty underwear. Sometimes I wonder what I used to do with all my “free” time before I discovered this world out here …. oh, I don’t know … maybe cook and clean house and do laundry? Anyway, I have dozens and dozens of sites I check on randomly, and about twenty that I check on at *least* once a week, and around five or six that I check on every day, fearful of missing a single journal entry.
One of those daily-requirement-sites is an awesome kid named Spencer Rocket, who many of you already know, I’m sure. But for those of you who have never heard of Spencer, or have only been loosely following his story, I have some pretty fabulous news:
SPENCER ROCKET FLEW BACK HOME TO CALIFORNIA TODAY, YIPPEEEE!!!
What’s my connection to Spencer? Nothing, really, except he’s an adorable little guy who has completely stolen my heart. I met his mom Kerri on my All-Kids online Support Group, and because Spencer is only a year younger than Kendrie, and cute as they come, Kerri and I used to joke that we were going to force the two of them to go to their Sr. Prom together, in 2017. Spencer was diagnosed on Kendrie’s birthday, Sept 2, 2003, with T-cell ALL. T-cell is not as common as B-cell and is generally considered a higher-risk leukemia. Nonetheless, Spencer was doing great until Feb, 2004, when doctors discovered Spencer had relapsed in his central nervous system. And so began their long and incredibly difficult journey.
The doctors had a difficult (and I use that term lightly --- I mean DIFFICULT) time getting Spencer back into remission after the relapse. Once they did, Spencer and his parents, Kerri and Brian, left everything that was familiar in their life and moved cross country, to Duke University Medical Center in North Carolina, where Spencer received an Unrelated Umbilical Cord Blood Transplant on May 5, 2004.
Since transplant, Spencer has done very well, but that doesn’t take away from the cost (both fiscal and emotional) that his family has faced, living in a strange apartment in a strange city, thousands of miles from home, giving up their jobs and home and friends and family and everything that is “home” for six months; watching other transplant families struggle with complications from the procedure, several losing the battle, and worrying all the time about Spencer. I have been asked on occasion why Kendrie is undergoing chemotherapy for leukemia; why don’t her doctors just jump straight to a transplant? The answer is that a transplant is the most extreme form of cancer treatment possible; truly a measure of last resort. That’s not to say some kids don’t do beautifully, and Spencer is certainly an example of that, but it’s not a road *anyone* would elect to go down, given the choice.
I have spent the past eight months praying for Spencer, his parents and his medical staff. (And the chefs at Maggiano’s!) I’ve sent up positive thoughts, meditated, crossed my fingers, held my breath …. I’ve done everything but sacrifice a live chicken in the town square and if I thought for one brief second that would have helped Spencer, I would have braved the wrath of PETA! Thank goodness it wasn’t necessary. Now, I am SO happy to report that Spencer has been cleared to return home to California and finish out his treatment at home. Please, if you have a minute, stop by Spencer’s site and give him and his family a note of congratulations!
Spencer, we have followed your journey closely and couldn’t be happier tonight that you have been allowed to return home, to your familiar house with familiar toys and faces. Kerri and Brian, your dedication to Spencer these past eight months has been such an inspiration to me! Thank you for sharing his story through the Caringbridge journal; it has been entertaining and informative. Relax back at home and get ready --- we’re coming for a visit, if not before, then at least in 2017 in time for the Prom!
Best wishes,
Kristie
#####################################################3
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT CANCER TODAY:
Well, I’m a little disappointed that we don’t get to meet Spencer’s family this week like we had hoped. My mom said they were planning to drive from North Carolina to Florida and we were going to meet them on the way. I was so excited and had been bugging mom to take me to Spencer’s site every day, and then we found out last week that Spencer gets to go straight back home to California, so no visit for us! If mom thinks I’m going on a “Blind” Prom Date, she’s crazy. I don’t care how cute he looks in his pictures!
BEST PART ABOUT CANCER TODAY:
Ok, who am I kidding? I can’t even hold a grudge, since I’m so happy for Spencer that he gets to finally go home! I can't imagine being gone from my friends and toys and bike for that long, and especially being stuck in an apartment with my parents for six months! I hope the next time he visits the East Coast for a check-up we get to hook up, though!
OK, I freely admit it, I am a Caringbridge junkie. I have an obsessive need to check on “my” kids and will always make time to get a few hours’ worth of CB surfing each day, even if that means my family has to eat fast food, off paper plates, sitting on an un-vacuumed floor, wearing dirty underwear. Sometimes I wonder what I used to do with all my “free” time before I discovered this world out here …. oh, I don’t know … maybe cook and clean house and do laundry? Anyway, I have dozens and dozens of sites I check on randomly, and about twenty that I check on at *least* once a week, and around five or six that I check on every day, fearful of missing a single journal entry.
One of those daily-requirement-sites is an awesome kid named Spencer Rocket, who many of you already know, I’m sure. But for those of you who have never heard of Spencer, or have only been loosely following his story, I have some pretty fabulous news:
SPENCER ROCKET FLEW BACK HOME TO CALIFORNIA TODAY, YIPPEEEE!!!
What’s my connection to Spencer? Nothing, really, except he’s an adorable little guy who has completely stolen my heart. I met his mom Kerri on my All-Kids online Support Group, and because Spencer is only a year younger than Kendrie, and cute as they come, Kerri and I used to joke that we were going to force the two of them to go to their Sr. Prom together, in 2017. Spencer was diagnosed on Kendrie’s birthday, Sept 2, 2003, with T-cell ALL. T-cell is not as common as B-cell and is generally considered a higher-risk leukemia. Nonetheless, Spencer was doing great until Feb, 2004, when doctors discovered Spencer had relapsed in his central nervous system. And so began their long and incredibly difficult journey.
The doctors had a difficult (and I use that term lightly --- I mean DIFFICULT) time getting Spencer back into remission after the relapse. Once they did, Spencer and his parents, Kerri and Brian, left everything that was familiar in their life and moved cross country, to Duke University Medical Center in North Carolina, where Spencer received an Unrelated Umbilical Cord Blood Transplant on May 5, 2004.
Since transplant, Spencer has done very well, but that doesn’t take away from the cost (both fiscal and emotional) that his family has faced, living in a strange apartment in a strange city, thousands of miles from home, giving up their jobs and home and friends and family and everything that is “home” for six months; watching other transplant families struggle with complications from the procedure, several losing the battle, and worrying all the time about Spencer. I have been asked on occasion why Kendrie is undergoing chemotherapy for leukemia; why don’t her doctors just jump straight to a transplant? The answer is that a transplant is the most extreme form of cancer treatment possible; truly a measure of last resort. That’s not to say some kids don’t do beautifully, and Spencer is certainly an example of that, but it’s not a road *anyone* would elect to go down, given the choice.
I have spent the past eight months praying for Spencer, his parents and his medical staff. (And the chefs at Maggiano’s!) I’ve sent up positive thoughts, meditated, crossed my fingers, held my breath …. I’ve done everything but sacrifice a live chicken in the town square and if I thought for one brief second that would have helped Spencer, I would have braved the wrath of PETA! Thank goodness it wasn’t necessary. Now, I am SO happy to report that Spencer has been cleared to return home to California and finish out his treatment at home. Please, if you have a minute, stop by Spencer’s site and give him and his family a note of congratulations!
Spencer, we have followed your journey closely and couldn’t be happier tonight that you have been allowed to return home, to your familiar house with familiar toys and faces. Kerri and Brian, your dedication to Spencer these past eight months has been such an inspiration to me! Thank you for sharing his story through the Caringbridge journal; it has been entertaining and informative. Relax back at home and get ready --- we’re coming for a visit, if not before, then at least in 2017 in time for the Prom!
Best wishes,
Kristie
#####################################################3
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT CANCER TODAY:
Well, I’m a little disappointed that we don’t get to meet Spencer’s family this week like we had hoped. My mom said they were planning to drive from North Carolina to Florida and we were going to meet them on the way. I was so excited and had been bugging mom to take me to Spencer’s site every day, and then we found out last week that Spencer gets to go straight back home to California, so no visit for us! If mom thinks I’m going on a “Blind” Prom Date, she’s crazy. I don’t care how cute he looks in his pictures!
BEST PART ABOUT CANCER TODAY:
Ok, who am I kidding? I can’t even hold a grudge, since I’m so happy for Spencer that he gets to finally go home! I can't imagine being gone from my friends and toys and bike for that long, and especially being stuck in an apartment with my parents for six months! I hope the next time he visits the East Coast for a check-up we get to hook up, though!
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