We've done the King Family Double Play; but of course, Carson had to outdo that and come up with something all his own.
A triple play. Low ANC (230), Low IGg and an ear infection with a low grade fever.
Thankfully, this happened on a week day during business hours- no trip to the ER; and thankfully, Carson's fever is not high enough to land us in the hospital. We spent 2 hours at the clinic and then were sent home.
So, unless the fever spikes, we're home until Friday when we'll visit the clinic again for counts check and an IGg infusion. Friday will involve some juggling as I have a doctor's appointment of my own, but Paul will stay home to help sort things out.
Meanwhile, Carson is content as long as I tend immediately to his every demand. So far it is just a constant supply of food (because nothing seems to be tasting right) and TV shows/movies - manageable for the time being and better than being in the hospital.
-Jennifer
Wednesday, May 9, 2012
Thursday, May 3, 2012
LP Monday
Carson had a lumbar puncture (LP)/spinal tap on Monday. Since the clinic is getting out of the LP business, we were sent to the hospital after Carson finished his Vincristine push and his IV antibiotics.
Everything went fine at both clinic and hospital. The counts are in the right range for once, so all his oral meds will stay the same. We will go back to the clinic for a counts check in two weeks.
Everything went fine at both clinic and hospital. The counts are in the right range for once, so all his oral meds will stay the same. We will go back to the clinic for a counts check in two weeks.
Here is Carson before the LP. He was so hungry and in such a bad mood that he was no longer looking at or speaking to us.
Here is Carson after the LP. He was still not speaking to us because he was busy eating. He packed away an entire Starburst package, 2 snack packs of cinnamon Teddy Grahams and countless goldfish crackers.
We got home from the hospital about 2 and Carson was busy running around like a normal kid an hour later.
I love it! You get done what you need to get done, and then you get back to the business of being a kid!
-Jennifer
Friday, April 27, 2012
Yellow Belt
Here is Little Mister sporting his new yellow stripe belt. To earn it, he had to recite the student creed from memory to an instructor. He was all confidence about doing it, but the rest of us weren't so sure since "chemo/radiation brain" sometimes rears its ugly head around here. Also, the student creed isn't short - I had trouble memorizing it too and I don't even have "chemo brain" as an excuse.
"To build true confidence through strength in my body, honesty in my heart and knowledge in my mind. To keep friendship with one another and to build a strong and happy community. Never fight to achieve selfish ends, but to develop Might for Right!"
We are scheduled to another maintenance cycle on Monday. That means a long day of chemo, antibiotics and a spinal tap. We might find some time to practice some Tae Kwon Do moves while hanging out at the clinic and the hospital - the orange strip belt awaits!
"To build true confidence through strength in my body, honesty in my heart and knowledge in my mind. To keep friendship with one another and to build a strong and happy community. Never fight to achieve selfish ends, but to develop Might for Right!"
Showing off the new belt, complete with Karate Kid look - a headband. The funny thing is that this is the headband portion for one of those LED lights that you wear on your forehead!
We are scheduled to another maintenance cycle on Monday. That means a long day of chemo, antibiotics and a spinal tap. We might find some time to practice some Tae Kwon Do moves while hanging out at the clinic and the hospital - the orange strip belt awaits!
Thursday, April 26, 2012
Friday, April 20, 2012
Hootin and Hollerin at Ocean City
Documentation.
Most of you who see us on a regular basis, or are friends of ours of Facebook, already know about our recent weekend at Ocean City, but I promised a blog anyway. It is important to document that this weekend actually happened, in case there are police or congressional investigations on down the road.
But before that, a quick update on the patients. Both Carson and I are fine. Carson has stayed well and out of the clinic. We are not scheduled to go back until April 30, and knock, knock, we hope to make it. I had a 1 week post op appointment on April 12th. The doctor said I was healing just fine and then gave the OK for us to head to OC. Actually, I did not tell my doc about OC, I decided that "healing just fine" could be translated as "go ahead and travel 3.5 hours away for an awesome party, the beach and lots of fun."
So, on Friday we headed to Ocean City. The dogs were with Nona (who is visiting and helping), car was packed - packed with the usual beach stuff and some fancy duds. We were heading to the Gala by the Sea for Believe in Tomorrow. This time, the pressure was on though. Yours truly had been asked to speak to the audience.
I had to earn that steak and shrimp dinner this year.
My fears and nervousness melted away though as soon as we sat down at table number 8, and I noticed that indeed, the chocolate fountain was back! No, seriously, after the chocolate fountain, we met our table mates for the evening. Jason and Janine and shortly thereafter, Angie, Matt, Jenny and JJ. They were the reason my fears melted away.
It turns out that they are THE NICEST group of people you could ever hope to meet. It also turns out that Jason, Matt, their mother and dad and Jenny all are involved with the operations and management of the two (soon to be three) Hooters locations in Ocean City. They are a great.....and fun, fun, fun bunch of people.
We all hit it off immediately.
Carson took up with Jason like he was a long lost big brother. He moved his seat to the other side of the table to sit by Jason, he wandered all over the banquet hall to follow Jason to the silent auctions, he sat on his lap. Whatever Jason did, that's what Carson did. Now, you have to understand, Jason is probably 6'5" and weighs over 200 pounds. He used to play football, and when you see him, that is not hard to imagine. It was quite a sight to see our little Mr. up next to him, talking to him like he's known him all his life.
We all ate dinner, then watched the live auction with amazement as the Ocean City community came out in full support of the Believe in Tomorrow cause. Carson was busy with Jason trying to jack up the prices and goading people into bidding more. Carson was high five-ing people, laughing his little head off, taunting people with his stage whispers, like "Hey, jack it up"; and once he found out Jason was the general manager - he got busy telling people they were fired. It was hilarious and at one point, Carson put his hand on his forehead, laughing and shaking his head back and forth, like he couldn't believe how much fun he was having. The boy was giddy. Paul, Francesca and I spent the evening laughing too, amazed at what was playing out before us.
By the way, I did do my speech, Carson was at my side, and the crowd was kind enough to give Carson a standing ovation at the end, with the loudest cheers from his new found friends at table 8.
We continued to laugh throughout the next part of the Gala, an absolutely awesome magic show by John George. Lots of interaction between audience and performer particularly from the tables in and around where we were seated. Carson even got to help with some of the tricks............... then he fired Mr. George.
Good thing he wasn't taken seriously, the show was terrific!
All good things must come to and end, or do they?
The evening ended, but not before we were invited to breakfast at Hooters the following morning. From there, the fun just kept continuing. Not only did we get a delicious breakfast (I highly recommend Wings and Waffles), but Carson got a key ring, a cash register card, keys, a hat, a general manager name tag, a tour of the kitchen, the office, the entire restaurant. Plus, he got to fire as many people as he could! I think before it was all over, he was firing people who were walking down the street.
Francesca even got her very own Hooters hoodie! Would you have expected anything else?
So, how do you top that? You don't. In Carson's world, you just keep on truckin' at break neck speed....
A round of mini golf times two, a visit to the beach to dig in the sand and collect shells, dinner at Mancini's.
That was just Saturday.
Sunday
Paul and Francesca went out for a training run of 10 miles. The door had just shut behind them when Carson woke me up so that, according to him, "he could get to his job at Hooters". So, we went, played games, helped with orders, and agreed to come back later with Paul and Francesca in tow too.
Carson, sending in an order on the zip line, gets a little help from Lindsey.
At noon, Round Three at Hooters found Carson surrounded by Hooters girls (also the nicest people you'll ever meet) and presented with his very own Hooters shirt signed by all the girls he'd met. He was in heaven, but still proceeded to "fire" them all!
Thanks again to everyone for yet another wonderful weekend. When we were leaving Ocean City, I asked Paul, "How do we just keep having these terrific weekends?" Unbelievable.
When I spoke at the Gala, I talked a little bit about how Believe in Tomorrow and the people who support it are gifts from God. Most of these gifts have been in the form of tender, quiet mercies we've been shown. But this was different - they were loud, boisterous, happy, loving gifts that truly touched us and were completely unexpected. I shouldn't be surprised though, this is the exactly the way God works too!
-Jennifer
Most of you who see us on a regular basis, or are friends of ours of Facebook, already know about our recent weekend at Ocean City, but I promised a blog anyway. It is important to document that this weekend actually happened, in case there are police or congressional investigations on down the road.
But before that, a quick update on the patients. Both Carson and I are fine. Carson has stayed well and out of the clinic. We are not scheduled to go back until April 30, and knock, knock, we hope to make it. I had a 1 week post op appointment on April 12th. The doctor said I was healing just fine and then gave the OK for us to head to OC. Actually, I did not tell my doc about OC, I decided that "healing just fine" could be translated as "go ahead and travel 3.5 hours away for an awesome party, the beach and lots of fun."
So, on Friday we headed to Ocean City. The dogs were with Nona (who is visiting and helping), car was packed - packed with the usual beach stuff and some fancy duds. We were heading to the Gala by the Sea for Believe in Tomorrow. This time, the pressure was on though. Yours truly had been asked to speak to the audience.
I had to earn that steak and shrimp dinner this year.
My fears and nervousness melted away though as soon as we sat down at table number 8, and I noticed that indeed, the chocolate fountain was back! No, seriously, after the chocolate fountain, we met our table mates for the evening. Jason and Janine and shortly thereafter, Angie, Matt, Jenny and JJ. They were the reason my fears melted away.
It turns out that they are THE NICEST group of people you could ever hope to meet. It also turns out that Jason, Matt, their mother and dad and Jenny all are involved with the operations and management of the two (soon to be three) Hooters locations in Ocean City. They are a great.....and fun, fun, fun bunch of people.
We all hit it off immediately.
Carson took up with Jason like he was a long lost big brother. He moved his seat to the other side of the table to sit by Jason, he wandered all over the banquet hall to follow Jason to the silent auctions, he sat on his lap. Whatever Jason did, that's what Carson did. Now, you have to understand, Jason is probably 6'5" and weighs over 200 pounds. He used to play football, and when you see him, that is not hard to imagine. It was quite a sight to see our little Mr. up next to him, talking to him like he's known him all his life.
We all ate dinner, then watched the live auction with amazement as the Ocean City community came out in full support of the Believe in Tomorrow cause. Carson was busy with Jason trying to jack up the prices and goading people into bidding more. Carson was high five-ing people, laughing his little head off, taunting people with his stage whispers, like "Hey, jack it up"; and once he found out Jason was the general manager - he got busy telling people they were fired. It was hilarious and at one point, Carson put his hand on his forehead, laughing and shaking his head back and forth, like he couldn't believe how much fun he was having. The boy was giddy. Paul, Francesca and I spent the evening laughing too, amazed at what was playing out before us.
By the way, I did do my speech, Carson was at my side, and the crowd was kind enough to give Carson a standing ovation at the end, with the loudest cheers from his new found friends at table 8.
Carson and Jason take a moment for a photo. This photo is also proof that Carson
did look presentable at at least one point in the evening.
did look presentable at at least one point in the evening.
We continued to laugh throughout the next part of the Gala, an absolutely awesome magic show by John George. Lots of interaction between audience and performer particularly from the tables in and around where we were seated. Carson even got to help with some of the tricks............... then he fired Mr. George.
Good thing he wasn't taken seriously, the show was terrific!
Francesca, Carson and John George after the show. Carson sans vest and tie after a busy evening!
Francesca remained looking presentable the entire evening!
Francesca remained looking presentable the entire evening!
John George, Carson and JJ - along with non Dallas Cowboy memorabilia that JJ won in the silent auction.
All good things must come to and end, or do they?
The evening ended, but not before we were invited to breakfast at Hooters the following morning. From there, the fun just kept continuing. Not only did we get a delicious breakfast (I highly recommend Wings and Waffles), but Carson got a key ring, a cash register card, keys, a hat, a general manager name tag, a tour of the kitchen, the office, the entire restaurant. Plus, he got to fire as many people as he could! I think before it was all over, he was firing people who were walking down the street.
Francesca even got her very own Hooters hoodie! Would you have expected anything else?
So, how do you top that? You don't. In Carson's world, you just keep on truckin' at break neck speed....
A round of mini golf times two, a visit to the beach to dig in the sand and collect shells, dinner at Mancini's.
That was just Saturday.
Sunday
Paul and Francesca went out for a training run of 10 miles. The door had just shut behind them when Carson woke me up so that, according to him, "he could get to his job at Hooters". So, we went, played games, helped with orders, and agreed to come back later with Paul and Francesca in tow too.
Carson, sending in an order on the zip line, gets a little help from Lindsey.
Playing "Headbands" with manager Jenny and the Hooters Girls. Carson still cheats at games....
At noon, Round Three at Hooters found Carson surrounded by Hooters girls (also the nicest people you'll ever meet) and presented with his very own Hooters shirt signed by all the girls he'd met. He was in heaven, but still proceeded to "fire" them all!
Carson goes to Hooters for THE WINGS, yes, THE WINGS!
Thanks again to everyone for yet another wonderful weekend. When we were leaving Ocean City, I asked Paul, "How do we just keep having these terrific weekends?" Unbelievable.
When I spoke at the Gala, I talked a little bit about how Believe in Tomorrow and the people who support it are gifts from God. Most of these gifts have been in the form of tender, quiet mercies we've been shown. But this was different - they were loud, boisterous, happy, loving gifts that truly touched us and were completely unexpected. I shouldn't be surprised though, this is the exactly the way God works too!
-Jennifer
Saturday, April 7, 2012
Post Op Post
Day 2 after reconstruction surgery and I feel pretty good. I am sore and swollen, but it is manageable. Surgery took about 4 hours, so it was a long day for everyone. Glad to have it behind me.
Happy Easter everyone!!
Tuesday, April 3, 2012
Clinic Monday
Monday at the clinic was just about like any other clinic day for us, only there were a lot more patients than usual. We decided to order pizza for everyone and handed out chocolate eggs in between art projects.
Carsons counts are a bit elevated so the oral chemo will increase slightly. Other than that, it is the usual, begin the round of steroids, continue methotrexate, etc. etc.
Our day was a bit shorter than planned as we found out Carson's IGg level was actually just a few points under what is considered a "transfusable level". Once deciding not to do the infusion, we just had a quick chemo push and the pentamadine. We essentially cut 2-3 hours out of our visit with one fell swoop.
Of course, then we couldn't get Carson to leave, but that is another story. (We should have never started zinging that rolling chair back and forth across the infusion area - that is better than an amusement park ride for a 6 year old boy.)
We arrived home just a few minutes before Francesca called for us to pick her and friends up at the metro. They had been at the National Zoo most of the day, along with the rest of Northern Virginia kids on Spring Break.
The weather here is beautiful this morning. I just got back from spinning class and Francesca, Paul and the dogs are heading out for a run. Enjoy your day everyone!
Carsons counts are a bit elevated so the oral chemo will increase slightly. Other than that, it is the usual, begin the round of steroids, continue methotrexate, etc. etc.
Our day was a bit shorter than planned as we found out Carson's IGg level was actually just a few points under what is considered a "transfusable level". Once deciding not to do the infusion, we just had a quick chemo push and the pentamadine. We essentially cut 2-3 hours out of our visit with one fell swoop.
Of course, then we couldn't get Carson to leave, but that is another story. (We should have never started zinging that rolling chair back and forth across the infusion area - that is better than an amusement park ride for a 6 year old boy.)
We arrived home just a few minutes before Francesca called for us to pick her and friends up at the metro. They had been at the National Zoo most of the day, along with the rest of Northern Virginia kids on Spring Break.
The weather here is beautiful this morning. I just got back from spinning class and Francesca, Paul and the dogs are heading out for a run. Enjoy your day everyone!
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