We haven't posted in a few days because, fortunately for us, things are going pretty smoothly. We're still dealing with one tired kid, and "roid boy" as we refer to him sometimes, but we really can't complain. Things could definitely be much different.
We went to the doctor on Wednesday and the blood work continues to look good for now. Hemoglobin and platelets are at acceptable levels, so no transfusions necessary. Also, his ANC (an indicator of how able he is to fight infection) is improving as is his white blood cell count.
Carson continues on his steroid induced eating rampages and temper tantrums. For the last few days the food of choice has been pizza crust. He polished off the entire crust of a Papa John's large pizza in less than 24 hours and left us to eat the rest. He got SO mad when we told him it was all gone. For breakfast the last two days he's eaten an entire peanut butter and jelly sandwich, plus oatmeal or bacon, or another half sandwich. He is definitely packing it away.
When not eating, Carson has been doing a lot of sleeping and laying around. This latest chemo treatment has really wrung our little guy out. We see some sparks of playfulness, but they are short-lived and then he returns to rest on the couch. Each chemo treatment seems to knock him down a little bit more, and we still have another heavy one to go on Monday. We'll live with it though, beating leukemia is more important!
We're still receiving lots of support from our friends and family. Thank you so much! We will be forever grateful for all those praying and all those who are helping out. This will be such a long road for Carson (many more chemo treatments and tests to come over the next three+ years). We will need every one's prayers and help to get through it. It takes a village? It will take an army!
Our good friend Kathleen Armstrong in Florida is now training to participate in the 2010 Disney Marathon as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training. She is running in honor of her mother, a lymphoma survivor, and Carson.
Click here to check out her fundraising page!
Needless to say, we hope she raises lots of money! Good luck Kathleen!
-Jennifer
Friday, July 31, 2009
Tuesday, July 28, 2009
Great News
Day 17 of 1,278
So, the great news...and I mean GREAT news...is Carson's bone marrow test came back and there was no leukemia!! Nothin'. Nada. Zilch. Niente!
Can you say miracle??
Just to put things into perspective - at diagnosis the leukemia in Carson's bone marrow was at 89%. This pushed his white blood cell count (which was mostly cancerous leukemia cells) to 240k...WAY over the normal 5 - 10k. At day 9, after the first week of chemo, he was at 7%. Now, at day 16...he's clear! Now THAT'S what I'm talking about when I say we are taking the fight to the leukemia. Sweeeeeet!
I decided to make an appearance at work this afternoon. Jennifer called shortly after I got there with the great news. She was so happy she was crying...which is totally understandable...but she totally scared the pants off of me!
So, what does this all mean? It means that Carson is responding extremely well to the therapy. This particular bone marrow test is a milestone on the treatment road map and puts Carson closer to being categorized as a Rapid Early Responder (RER). Although the longer term treatment pretty much remains the same, we feel a lot better with positive results up front. It's a good indicator...and we'll take it.
Carson and fellow gang member Nils put on a show of force to demonstrate they are still in control of the cul-de-sac.
So, the great news...and I mean GREAT news...is Carson's bone marrow test came back and there was no leukemia!! Nothin'. Nada. Zilch. Niente!
Can you say miracle??
Just to put things into perspective - at diagnosis the leukemia in Carson's bone marrow was at 89%. This pushed his white blood cell count (which was mostly cancerous leukemia cells) to 240k...WAY over the normal 5 - 10k. At day 9, after the first week of chemo, he was at 7%. Now, at day 16...he's clear! Now THAT'S what I'm talking about when I say we are taking the fight to the leukemia. Sweeeeeet!
I decided to make an appearance at work this afternoon. Jennifer called shortly after I got there with the great news. She was so happy she was crying...which is totally understandable...but she totally scared the pants off of me!
So, what does this all mean? It means that Carson is responding extremely well to the therapy. This particular bone marrow test is a milestone on the treatment road map and puts Carson closer to being categorized as a Rapid Early Responder (RER). Although the longer term treatment pretty much remains the same, we feel a lot better with positive results up front. It's a good indicator...and we'll take it.
Carson and fellow gang member Nils put on a show of force to demonstrate they are still in control of the cul-de-sac.Although he was waited on hand and foot by a wonderful staff at the hospital, Carson has perked up considerably at home. He is back in his own room, his own bed, and has every conceivable toy at his disposal. He is sleeping better and is more active when he's awake. This evening he even wanted to take a spin on his "hog" (otherwise known as a tricycle among normal children). We expected it would be a short ride...and it was...but he enjoyed it. It was just like old times.
Tomorrow we are making our first visit to the outpatient clinic for blood work.
We still have a way to go. Please keep up the prayers. Carson is very susceptible to infection and we have more chemo ahead of us. The next bone marrow test is two weeks away.
Paul.
Tomorrow we are making our first visit to the outpatient clinic for blood work.
We still have a way to go. Please keep up the prayers. Carson is very susceptible to infection and we have more chemo ahead of us. The next bone marrow test is two weeks away.
Paul.
Monday, July 27, 2009
Home Again
Surprise! Carson is home today! 18 (sometimes endless) days at the hospital....and now, here we are at home.
Carson threatens to "blow this joint" in his new airplane, but we are preemptively discharged.
We finally got home around 7:00 this evening. Carson was all smiles in his car seat as we went home. He looked out the window and shouted, "There's a taxi, there's a dumptruck" as each one came into view. When we started talking about dinner he informed us that he "loved Taco Bell", so guess where we stopped before we got home?
In medical news: Carson had his third bone marrow test today. We still don't know the final results, but the doctors liked how the initial look at the marrow appeared, so they sent us home. Of course, we have to go back to the doctor on Wednesday for more blood work, but that will be done at an outpatient clinic, not the hospital.
After the bone marrow test, Carson also had his third chemo treatment. So far, so good, no side effects except fatigue right now.
Speaking of fatigue, that's how we feel as well. We'll attempt to be clever and witty tomorrow. For now, we'll rest at home...all of us together!
-Jennifer
P.S. Paul is not now, nor recently been, in the doghouse!
Carson threatens to "blow this joint" in his new airplane, but we are preemptively discharged.We finally got home around 7:00 this evening. Carson was all smiles in his car seat as we went home. He looked out the window and shouted, "There's a taxi, there's a dumptruck" as each one came into view. When we started talking about dinner he informed us that he "loved Taco Bell", so guess where we stopped before we got home?
In medical news: Carson had his third bone marrow test today. We still don't know the final results, but the doctors liked how the initial look at the marrow appeared, so they sent us home. Of course, we have to go back to the doctor on Wednesday for more blood work, but that will be done at an outpatient clinic, not the hospital.
After the bone marrow test, Carson also had his third chemo treatment. So far, so good, no side effects except fatigue right now.
Speaking of fatigue, that's how we feel as well. We'll attempt to be clever and witty tomorrow. For now, we'll rest at home...all of us together!
-Jennifer
P.S. Paul is not now, nor recently been, in the doghouse!
Sunday, July 26, 2009
Praying for Monday
Day 15 of 1,278
It was pretty slow today. Carson is slightly more upbeat than yesterday, but overall still lethargic. He donned his surgical mask and made it out of the room a couple of times, but only briefly. Most of the day was spent on the pull out bed (which he prefers over the hospital bed) surrounded by his favorite foods. Although the feeding frenzy subsided slightly, he still did some damage. The boy can eat!
"After my chicken nuggets and fries, can I have some raisins, a donut, and some popcorn? Chop chop!" Carson submits his after-dinner dessert order.
The steroids continue to drive his food cravings and fashion his "chipmunk" cheeks (see photo). Today he had Baja Fresh chips and rice for breakfast. Of course, I broke out the hot sauce and helped him with the chips. You know, now that I think about it, maybe that wasn't the steroids...the Baja Fresh craving was probably just a hereditary thing. But he did have a brief craving for...of all things...raisins. Now THAT has to be the steroids because it's just too weird.
(If I have offended any raisin lovers out there, please understand it's not intentional. Raisins just aren't our thing. Sorry!)
By the end of the day, however, we were off Baja Fresh and on to other things...like fries from Wendy's. And it HAD to be Wendy's. I never knew he was such a fry connoisseur, but Wendy's it is!
The important news of the day is that we are praying for a good day tomorrow. We are not sure of the exact time of the procedure, but are hoping that it is early in the morning. The bone marrow test at this stage is generally viewed with some significance as it is an important indicator of how the treatment is going. Please pray Carson's bone marrow is clear, the chemo goes smoothly, and he is comfortable.
I know God is omnipotent and can clear Carson's bone marrow at any stage. But, if I can weigh in here, my prayer is that He just go ahead and clear it now. Call me selfish, but I'd prefer NOT to wait go with a more dramatic miracle. Clearing his bone marrow now is big enough of a miracle for me.
The full bone marrow results won't be back until later on Tuesday. We will post results as soon as we know them.
Thanks to everyone for the tremendous love, support, and prayers.
Go Carson!!!
Paul.
P.S. A big thank you to Lori for the flowers. Jennifer loved them so much she let me have a pillow to use in the doghouse. (Guys, make a note, ALWAYS get your wife an anniversary card!)
It was pretty slow today. Carson is slightly more upbeat than yesterday, but overall still lethargic. He donned his surgical mask and made it out of the room a couple of times, but only briefly. Most of the day was spent on the pull out bed (which he prefers over the hospital bed) surrounded by his favorite foods. Although the feeding frenzy subsided slightly, he still did some damage. The boy can eat!
"After my chicken nuggets and fries, can I have some raisins, a donut, and some popcorn? Chop chop!" Carson submits his after-dinner dessert order.The steroids continue to drive his food cravings and fashion his "chipmunk" cheeks (see photo). Today he had Baja Fresh chips and rice for breakfast. Of course, I broke out the hot sauce and helped him with the chips. You know, now that I think about it, maybe that wasn't the steroids...the Baja Fresh craving was probably just a hereditary thing. But he did have a brief craving for...of all things...raisins. Now THAT has to be the steroids because it's just too weird.
(If I have offended any raisin lovers out there, please understand it's not intentional. Raisins just aren't our thing. Sorry!)
By the end of the day, however, we were off Baja Fresh and on to other things...like fries from Wendy's. And it HAD to be Wendy's. I never knew he was such a fry connoisseur, but Wendy's it is!
The important news of the day is that we are praying for a good day tomorrow. We are not sure of the exact time of the procedure, but are hoping that it is early in the morning. The bone marrow test at this stage is generally viewed with some significance as it is an important indicator of how the treatment is going. Please pray Carson's bone marrow is clear, the chemo goes smoothly, and he is comfortable.
I know God is omnipotent and can clear Carson's bone marrow at any stage. But, if I can weigh in here, my prayer is that He just go ahead and clear it now. Call me selfish, but I'd prefer NOT to wait go with a more dramatic miracle. Clearing his bone marrow now is big enough of a miracle for me.
The full bone marrow results won't be back until later on Tuesday. We will post results as soon as we know them.
Thanks to everyone for the tremendous love, support, and prayers.
Go Carson!!!
Paul.
P.S. A big thank you to Lori for the flowers. Jennifer loved them so much she let me have a pillow to use in the doghouse. (Guys, make a note, ALWAYS get your wife an anniversary card!)
Saturday, July 25, 2009
Doghouse Destiny
Day 14 of 1,278
Today is our anniversary. My lovely wife Jennifer and I have been married now for 17 years. (Where did the time go?!?) I'm sure many of you are wondering, "Why has she put up with him for so long?" Sometimes I think the same thing.
Truth is, Jennifer has the patience of Job. She puts up with all my quirky habits and then some. She supports my "training" for wacky races and allows me to channel surf with the remote control to my hearts content. (We really should own stock in Duracell.) Honestly, I could never have hoped to have it so good. She is, without a doubt, the best wife, mother, and friend a guy can dream of. I just happen to be the luckiest guy around!
Who are those people? A much younger family in 1998 (pre-Carson).
Problem is, with Carson in the hospital and all that has been going on the past two weeks, I didn't get her a card...or a present. We are together all the time during the day and we trade off staying at the hospital at night. And during the day, even when we're not at the hospital, we're still together. So, given the circumstances, I really thought I had a "bye" for the whole card thing this year.
Think again.
Somehow Jennifer managed to sneak in some time to get an anniversary card. And to make matters even worse, she got TWO cards for me. (Overachiever!) And, NO, the second card wasn't one for me to give to her. (I wish!)
I'm hoping she will at least show some leniency for my lack of judgement. But, time is of the essence. I need to act quickly. If anyone has a good idea of how to get out of this one, please chime in...I'm all ears. (And dinner isn't going to cut it...we already took care of that.)
Medical News:
There wasn't much change in Carson's blood work today. He still has to take precautions to protect himself from germs so that he doesn't get sick and we are still clear of leukemia in the blood. (Yeah!!!) We are still disconnected from IV fluids and looks like we'll remain that way for the time being.
Overall he was much more subdued today. His energy level was way down. He was up some this morning, got out of the room for a bit, and then ate his way to China...again. However, right after that he went to sleep...and he hasn't taken a morning nap in a LONG time. He woke up again a little after lunch, but just long enough to get another bite to eat and roll over in his bed.
There's a lot going on in his little body and it really hurts to see him so worn down.
Monday is the next big day. Please pray his bone marrow is clear, the chemo goes smoothly, and Carson is comfortable. It's all in God's hands.
Go chemo! Get those nasty leukemia cells!
Go Carson!!
Paul.
Today is our anniversary. My lovely wife Jennifer and I have been married now for 17 years. (Where did the time go?!?) I'm sure many of you are wondering, "Why has she put up with him for so long?" Sometimes I think the same thing.
Truth is, Jennifer has the patience of Job. She puts up with all my quirky habits and then some. She supports my "training" for wacky races and allows me to channel surf with the remote control to my hearts content. (We really should own stock in Duracell.) Honestly, I could never have hoped to have it so good. She is, without a doubt, the best wife, mother, and friend a guy can dream of. I just happen to be the luckiest guy around!
Who are those people? A much younger family in 1998 (pre-Carson).Problem is, with Carson in the hospital and all that has been going on the past two weeks, I didn't get her a card...or a present. We are together all the time during the day and we trade off staying at the hospital at night. And during the day, even when we're not at the hospital, we're still together. So, given the circumstances, I really thought I had a "bye" for the whole card thing this year.
Think again.
Somehow Jennifer managed to sneak in some time to get an anniversary card. And to make matters even worse, she got TWO cards for me. (Overachiever!) And, NO, the second card wasn't one for me to give to her. (I wish!)
I'm hoping she will at least show some leniency for my lack of judgement. But, time is of the essence. I need to act quickly. If anyone has a good idea of how to get out of this one, please chime in...I'm all ears. (And dinner isn't going to cut it...we already took care of that.)
Medical News:
There wasn't much change in Carson's blood work today. He still has to take precautions to protect himself from germs so that he doesn't get sick and we are still clear of leukemia in the blood. (Yeah!!!) We are still disconnected from IV fluids and looks like we'll remain that way for the time being.
Overall he was much more subdued today. His energy level was way down. He was up some this morning, got out of the room for a bit, and then ate his way to China...again. However, right after that he went to sleep...and he hasn't taken a morning nap in a LONG time. He woke up again a little after lunch, but just long enough to get another bite to eat and roll over in his bed.
There's a lot going on in his little body and it really hurts to see him so worn down.
Monday is the next big day. Please pray his bone marrow is clear, the chemo goes smoothly, and Carson is comfortable. It's all in God's hands.
Go chemo! Get those nasty leukemia cells!
Go Carson!!
Paul.
Friday, July 24, 2009
Feeling Hungry, Feeling Good!
Day 13 of 1,278
Carson woke up at 6 this morning and, out of the blue, proclaimed, "I like Baja Fresh!!" Just in case there was any doubt that he was my child, now we know. Yup, he's mine.
Actually this wasn't the first time he woke up talking about food. At 3 am he woke up and had some Honey Nut Cheerios followed by a small cup of M&Ms. Not bad for a midnight snack, huh? (Before we get chastised for how unhealthy this is, I would like to point out that this is a vast improvement over the previous night's snack - donuts!)
Unfortunately we didn't have anything from Baja Fresh on hand when he woke up at 6, but that didn't slow him down. He laid around for an hour then went on a food rampage. I am not kidding when I say he spent the next four hours grazing on everything in sight. It went something like this:
Carson gets his fill of chips and rice from Baja Fresh before starting in on the basket of cookies! Note the puffy cheeks starting to form. (Side effect of the heavy steroids.)
So much effort went into eating that Carson got really tired and took a 3 hour nap. (Now that's a blessing!) This was the longest nap he's taken since being diagnosed.
Medical Update:
Carson is feeling REALLY good today.
-Paul and Jennifer
Carson woke up at 6 this morning and, out of the blue, proclaimed, "I like Baja Fresh!!" Just in case there was any doubt that he was my child, now we know. Yup, he's mine.
Actually this wasn't the first time he woke up talking about food. At 3 am he woke up and had some Honey Nut Cheerios followed by a small cup of M&Ms. Not bad for a midnight snack, huh? (Before we get chastised for how unhealthy this is, I would like to point out that this is a vast improvement over the previous night's snack - donuts!)
Unfortunately we didn't have anything from Baja Fresh on hand when he woke up at 6, but that didn't slow him down. He laid around for an hour then went on a food rampage. I am not kidding when I say he spent the next four hours grazing on everything in sight. It went something like this:
- Honey Nut Cheerios (again)
- M&Ms (again)
- Cheetos
- Egg Whites
- Pancake
- Popcorn
- Banana
- South Beach protein bar
- Toast
- Pizza
- Sun Chips (Cheddar)
- Hot Tamales (just 2 pieces)
- Gatorade (2 cans)
- Ginger Ale
Carson gets his fill of chips and rice from Baja Fresh before starting in on the basket of cookies! Note the puffy cheeks starting to form. (Side effect of the heavy steroids.)So much effort went into eating that Carson got really tired and took a 3 hour nap. (Now that's a blessing!) This was the longest nap he's taken since being diagnosed.
Medical Update:
Carson is feeling REALLY good today.
- blood work: still holding steady at 0% leukemia in the blood! Platelets and hemoglobin still OK but on the low side, no transfusions required yet though.
- energy: the monkey is back - he is climbing in/out/on the bed, on the chairs, etc. This is something he hasn't done since we arrived here at the hospital.
- mouth: moving constantly - it is either eating or talking or squealing or laughing
-Paul and Jennifer
Thursday, July 23, 2009
Rays of Sunshine
Day 12 of 1,278
I went upstairs before leaving home this morning and stood there...what in the world I had come up for? Was it for clothes to take to the hospital? Nope, got those. Was it to get my keys? Nope, got those, too. It took me a while, then I remembered...I needed a battery for Carson's remote control car. (I'm not saying who needed the remote control car...suffice to say it's a really cool car that can flip over!)
The past two weeks have been absolutely filled with moments like this. What's scary is that when I'm driving it's even worse. I miss my turns. I forget where I'm going. I stop at green lights. (Fortunately I stop at most of the red ones, too.) Luckily, Jennifer is usually there with me to snap me back to reality before anything too serious happens.
With everything that's going on...mentally, I'm out of it. I am toast. Fried. My mind is jello. Stick a fork in me, I'm done. (I just love how all of these expressions have something to do with my favorite subject...FOOD!) Point is, my focus has been on Carson, the hospital, and whatever is the next test.
So, just a word of warning, if you are out there and you see me behind the wheel...look out!
Medical News:
Carson had a good day. He made it out of the room a number of times. We rode the plasma car. We went to the play room and built Lego hospitals. Being boys, we then crashed into the Legos with our hot rod matchbox cars and sent pieces scattering everywhere! We even popped a bag of popcorn and went over to the helicopter bridge and had a "picnic". And right on cue, a medivac helicopter came in and landed. Talk about awesome!
At times Carson has a few pains here and there. Nothing major, nothing for long. We're not sure if they are related to the chemo or not...most likely they are. He is still drained of his normal energy. He gets a burst every now and then, but it's not too long before he wants to go back to the room and rest. We spent the day off of IV fluids, but they are going to reconnect him tonight just to make sure he's getting enough fluid to keep his system flushed.
The really great news is that for the second day in a row he had no leukemia in his blood!! Leukemia spills into the bloodstream from the bone marrow. So this means the chemo is getting to the right places in the bone marrow. Go chemo!! Kill those nasty leukemia cells!!!
Please pray for strength for Carson. Tonight he turned to me and in a quiet, soft voice said, "Daddy, I don't like the hospital." We made it fun at first, but clearly the routine is getting old. He's tired and we need to keep his spirits up.
Being here on the Pediatric Oncology ward, a few steps from the Pediatric ICU, puts things into perspective rather quickly. There are people all around us going through unimaginable challenges - both children and parents. It's a difficult place...yet God is here comforting and healing. Another request: Please keep our new neighbors up here in your prayers, too!
Leukemia is no cakewalk. Our road ahead is bumpy and uncertain. However, right now God is shining beautiful rays of sunshine in the midst of all the storm clouds. And that's a pretty thing to see. We will count our blessings and pray they continue!
As I have said before, we have been overwhelmed by the love and kindness sent our way. The prayers, encouraging comments, gifts, food....it has been absolutely amazing. Thank you. Thank you. Thank you!
Paul.
I went upstairs before leaving home this morning and stood there...what in the world I had come up for? Was it for clothes to take to the hospital? Nope, got those. Was it to get my keys? Nope, got those, too. It took me a while, then I remembered...I needed a battery for Carson's remote control car. (I'm not saying who needed the remote control car...suffice to say it's a really cool car that can flip over!)
The past two weeks have been absolutely filled with moments like this. What's scary is that when I'm driving it's even worse. I miss my turns. I forget where I'm going. I stop at green lights. (Fortunately I stop at most of the red ones, too.) Luckily, Jennifer is usually there with me to snap me back to reality before anything too serious happens.
With everything that's going on...mentally, I'm out of it. I am toast. Fried. My mind is jello. Stick a fork in me, I'm done. (I just love how all of these expressions have something to do with my favorite subject...FOOD!) Point is, my focus has been on Carson, the hospital, and whatever is the next test.
So, just a word of warning, if you are out there and you see me behind the wheel...look out!
Medical News:
Carson had a good day. He made it out of the room a number of times. We rode the plasma car. We went to the play room and built Lego hospitals. Being boys, we then crashed into the Legos with our hot rod matchbox cars and sent pieces scattering everywhere! We even popped a bag of popcorn and went over to the helicopter bridge and had a "picnic". And right on cue, a medivac helicopter came in and landed. Talk about awesome!
At times Carson has a few pains here and there. Nothing major, nothing for long. We're not sure if they are related to the chemo or not...most likely they are. He is still drained of his normal energy. He gets a burst every now and then, but it's not too long before he wants to go back to the room and rest. We spent the day off of IV fluids, but they are going to reconnect him tonight just to make sure he's getting enough fluid to keep his system flushed.
The really great news is that for the second day in a row he had no leukemia in his blood!! Leukemia spills into the bloodstream from the bone marrow. So this means the chemo is getting to the right places in the bone marrow. Go chemo!! Kill those nasty leukemia cells!!!
Please pray for strength for Carson. Tonight he turned to me and in a quiet, soft voice said, "Daddy, I don't like the hospital." We made it fun at first, but clearly the routine is getting old. He's tired and we need to keep his spirits up.
Being here on the Pediatric Oncology ward, a few steps from the Pediatric ICU, puts things into perspective rather quickly. There are people all around us going through unimaginable challenges - both children and parents. It's a difficult place...yet God is here comforting and healing. Another request: Please keep our new neighbors up here in your prayers, too!
Leukemia is no cakewalk. Our road ahead is bumpy and uncertain. However, right now God is shining beautiful rays of sunshine in the midst of all the storm clouds. And that's a pretty thing to see. We will count our blessings and pray they continue!
As I have said before, we have been overwhelmed by the love and kindness sent our way. The prayers, encouraging comments, gifts, food....it has been absolutely amazing. Thank you. Thank you. Thank you!
Paul.
Wednesday, July 22, 2009
Count Your Blessings
Here I go again with hymns from childhood:
Count your blessings, name them one by one
Count your blessings see what God has done
Count your blessings....name them one by one
Count your many blessings see what God has done.
Yesterday, I was supposed to be watering the back yard, but was considering busting out crying instead. Carson had been feeling lethargic all morning, he didn't have much of an appetite, and we had not received the final results of the bone marrow test. I was scared. This hymn popped into my head and I began to realize I had so many things to be thankful for...I could face what came next.
As it turned out, God gave us more blessings. Let me count them one by one.......
1. On the medical front Carson's bone marrow test on Monday (prior to his second chemo treatment) was extremely encouraging. The doctor's have even said "AMAZING". Only 7% of his bone marrow is now leukemia. This is down from 89% leukemia on Saturday, July 11. We have dropped 82% after only one chemo treatment!
2. Blood drawn about 12 hours after the latest chemo round showed ZERO leukemic cells spilling over into the bloodstream. This is a great sign.....no leukemia in the blood means the bone marrow has slowed production of those cells.
3. Carson's energy was back today. Given a boost by the fact that he no longer has to be hooked up to "Stretch", the IV bag holder, Carson was all over the ward this morning. He raced around the rooms, he raced to the helicopter viewing area, he played in the playroom and did laps around the gazebo on the Big Wheel at the outdoor play area.
4. The appetite is back again. This is a blessing, but sometimes you wonder about that when you are asking the kitchen to make eggs for your child at 9:00 at night!
5. We have wonderful friends and a wonderful church family. Thank you for all the visits over these past few weeks! In just the last two days, we've had visits from seven different sets of people - with more scheduled for tomorrow. We've received tons of wonderful emails, encouraging cards and meals at home and at the hospital. Those comments on the blog? They are really keeping us going. And, finally, do I need to mention all the prayer lists where Carson's name appears because a caring friend or family member has put it there? It is absolutely overwhelming.
6. We have wonderful family! My crying episode yesterday was made by possible by Grandma - she stays with Carson while he takes a nap, which means she spends the ENTIRE day at the hospital. The fact that we can come home and cry is indeed a blessing. We get it out of our system, and can then be strong for Carson again. Thanks Grandma! And thanks to all our family for all the help not mentioned here...... (it would take up too much space!)
And with that, I'll close for today. I feel ready to fight the fight again tomorrow. I know we have a long road ahead, I know I'll need to take it one day at a time, but counting my blessings has lightened my load for the time being. I'll take those blessings, I'll embrace them, I'll thank God for them!
-Jennifer
Count your blessings, name them one by one
Count your blessings see what God has done
Count your blessings....name them one by one
Count your many blessings see what God has done.
Yesterday, I was supposed to be watering the back yard, but was considering busting out crying instead. Carson had been feeling lethargic all morning, he didn't have much of an appetite, and we had not received the final results of the bone marrow test. I was scared. This hymn popped into my head and I began to realize I had so many things to be thankful for...I could face what came next.
As it turned out, God gave us more blessings. Let me count them one by one.......
1. On the medical front Carson's bone marrow test on Monday (prior to his second chemo treatment) was extremely encouraging. The doctor's have even said "AMAZING". Only 7% of his bone marrow is now leukemia. This is down from 89% leukemia on Saturday, July 11. We have dropped 82% after only one chemo treatment!
2. Blood drawn about 12 hours after the latest chemo round showed ZERO leukemic cells spilling over into the bloodstream. This is a great sign.....no leukemia in the blood means the bone marrow has slowed production of those cells.
3. Carson's energy was back today. Given a boost by the fact that he no longer has to be hooked up to "Stretch", the IV bag holder, Carson was all over the ward this morning. He raced around the rooms, he raced to the helicopter viewing area, he played in the playroom and did laps around the gazebo on the Big Wheel at the outdoor play area.
4. The appetite is back again. This is a blessing, but sometimes you wonder about that when you are asking the kitchen to make eggs for your child at 9:00 at night!
5. We have wonderful friends and a wonderful church family. Thank you for all the visits over these past few weeks! In just the last two days, we've had visits from seven different sets of people - with more scheduled for tomorrow. We've received tons of wonderful emails, encouraging cards and meals at home and at the hospital. Those comments on the blog? They are really keeping us going. And, finally, do I need to mention all the prayer lists where Carson's name appears because a caring friend or family member has put it there? It is absolutely overwhelming.
6. We have wonderful family! My crying episode yesterday was made by possible by Grandma - she stays with Carson while he takes a nap, which means she spends the ENTIRE day at the hospital. The fact that we can come home and cry is indeed a blessing. We get it out of our system, and can then be strong for Carson again. Thanks Grandma! And thanks to all our family for all the help not mentioned here...... (it would take up too much space!)
And with that, I'll close for today. I feel ready to fight the fight again tomorrow. I know we have a long road ahead, I know I'll need to take it one day at a time, but counting my blessings has lightened my load for the time being. I'll take those blessings, I'll embrace them, I'll thank God for them!
-Jennifer
Tuesday, July 21, 2009
How did we get here?
Day 10 of 1,278
Medical News:
We received word back on the bone marrow and spinal fluid tests from yesterday. Like last week, the spinal fluid is NEGATIVE for leukemia. This means he won't have to have another spinal test next week. His bone marrow came back with a 7% blasts (leukemia cells). So, we're not in remission...there are a few stragglers out there. But, this is a drastic improvement over last week. This is all good news.
Carson is somewhat tired today, but still doing super overall. We will probably be here in the hospital at least through the next round of tests and chemo - scheduled for Monday. Our hope is that Carson is in remission by the time they do bone marrow tests next week. Please pray the chemo continues to do its job and kill off those nasty leukemia cells.
Thanks to everyone for the continued love and support!!
How did we get here?
Now, we've been asked dozens of times about the events that lead up to getting here. Just how did we end up in the hospital with a diagnosis of leukemia?
Well...for a week or two leading up to July 10th we had noticed Carson seeming not quite himself. He wasn't running a fever or showing any other signs of illness. He just seemed to tire more quickly and act crabby. Carson had started swimming lessons and was playing hard with his friends. But none of this seemed out of the ordinary. We are talking about an active 3 year old.
Around the first of July we noticed what looked like a rash or sunburn on the back of his neck. If you got really close, it looked like a bunch of tiny red dots on his skin. But it was just around the back of his neck and upper shoulder area.Hmmm ...we had just started swimming so it could be a number of things. Maybe it was the a reaction to the sunscreen? (Not likely.) Maybe it was parent operator error and we just didn't apply the sunscreen evenly? A weird looking sunburn? That sounded the best.
A few days later we noticed some bumps on the back of his neck. And when I say bumps...not like those associated with a rash. Something deeper under the skin. He was looking like he was putting on a little weight. But this is something 3 year-olds do from time to time when they have a growth spurt, right? He was sleeping a little more and putting on weight. Are the bumps part of a growth spurt? A few days later we noticed the bumps were still there and talked about taking him to the doctor. What would we say to the doctor? He seems tired and not himself? We didn't want to be the those overreacting parents...so we waited.
On July 9th we again noticed the bumps on his neck - they were still there. What the heck is going on? Things like this are supposed to go away after a couple of days, right? They aren't supposed to still be there.
Carson was still acting crabby. He didn't feel warm to the touch, but Jennifer decided to take his temperature anyway. Of course she decided on the under arm thermometer...which I NEVER would have chosen. Call me old-fashioned. Under arm readings never seem to be consistent. Well, thankfully she did. When she raised his arm she found a huge bulge just under his armpit.
It was his lymph nodes. Under his arm. The back of his neck. They were swollen all over.
Fast forward 24 hours and we were in the hospital hooked up to all kinds of tubes and monitors. The rash/sunburn on the back of his neck was caused by low platelets. Small capillaries in his skin were bursting and couldn't clot. His lymph nodes, liver, and spleen were swollen beyond belief, trying to filter out the leukemic white blood cells which were flooding his bloodstream.
Even though the doctors speculate that Carson had only been sick for a few of weeks, he was in really bad shape. His leukemia is aggressive.
Is that a football neck you have going on, or is that leukemia? Carson showing off new swim goggles on June 27th, two weeks before diagnosis.
Then the fear hits. No matter how many encouraging stories you hear, you are still scared. This isn't Vegas. When your child's life on the line you don't want to hear about the odds. And then the guilt sets in. What were we thinking putting off taking him to the doctor? Why us? Did I do something wrong? Why couldn't it be me instead of him? I'd switch places in a heartbeat.
I know there's a reason for everything. I just wish I could figure out what that reason was!
Paul.
Medical News:
We received word back on the bone marrow and spinal fluid tests from yesterday. Like last week, the spinal fluid is NEGATIVE for leukemia. This means he won't have to have another spinal test next week. His bone marrow came back with a 7% blasts (leukemia cells). So, we're not in remission...there are a few stragglers out there. But, this is a drastic improvement over last week. This is all good news.
Carson is somewhat tired today, but still doing super overall. We will probably be here in the hospital at least through the next round of tests and chemo - scheduled for Monday. Our hope is that Carson is in remission by the time they do bone marrow tests next week. Please pray the chemo continues to do its job and kill off those nasty leukemia cells.
Thanks to everyone for the continued love and support!!
How did we get here?
Now, we've been asked dozens of times about the events that lead up to getting here. Just how did we end up in the hospital with a diagnosis of leukemia?
Well...for a week or two leading up to July 10th we had noticed Carson seeming not quite himself. He wasn't running a fever or showing any other signs of illness. He just seemed to tire more quickly and act crabby. Carson had started swimming lessons and was playing hard with his friends. But none of this seemed out of the ordinary. We are talking about an active 3 year old.
Around the first of July we noticed what looked like a rash or sunburn on the back of his neck. If you got really close, it looked like a bunch of tiny red dots on his skin. But it was just around the back of his neck and upper shoulder area.Hmmm ...we had just started swimming so it could be a number of things. Maybe it was the a reaction to the sunscreen? (Not likely.) Maybe it was parent operator error and we just didn't apply the sunscreen evenly? A weird looking sunburn? That sounded the best.
A few days later we noticed some bumps on the back of his neck. And when I say bumps...not like those associated with a rash. Something deeper under the skin. He was looking like he was putting on a little weight. But this is something 3 year-olds do from time to time when they have a growth spurt, right? He was sleeping a little more and putting on weight. Are the bumps part of a growth spurt? A few days later we noticed the bumps were still there and talked about taking him to the doctor. What would we say to the doctor? He seems tired and not himself? We didn't want to be the those overreacting parents...so we waited.
On July 9th we again noticed the bumps on his neck - they were still there. What the heck is going on? Things like this are supposed to go away after a couple of days, right? They aren't supposed to still be there.
Carson was still acting crabby. He didn't feel warm to the touch, but Jennifer decided to take his temperature anyway. Of course she decided on the under arm thermometer...which I NEVER would have chosen. Call me old-fashioned. Under arm readings never seem to be consistent. Well, thankfully she did. When she raised his arm she found a huge bulge just under his armpit.
It was his lymph nodes. Under his arm. The back of his neck. They were swollen all over.
Fast forward 24 hours and we were in the hospital hooked up to all kinds of tubes and monitors. The rash/sunburn on the back of his neck was caused by low platelets. Small capillaries in his skin were bursting and couldn't clot. His lymph nodes, liver, and spleen were swollen beyond belief, trying to filter out the leukemic white blood cells which were flooding his bloodstream.
Even though the doctors speculate that Carson had only been sick for a few of weeks, he was in really bad shape. His leukemia is aggressive.
Is that a football neck you have going on, or is that leukemia? Carson showing off new swim goggles on June 27th, two weeks before diagnosis.Then the fear hits. No matter how many encouraging stories you hear, you are still scared. This isn't Vegas. When your child's life on the line you don't want to hear about the odds. And then the guilt sets in. What were we thinking putting off taking him to the doctor? Why us? Did I do something wrong? Why couldn't it be me instead of him? I'd switch places in a heartbeat.
I know there's a reason for everything. I just wish I could figure out what that reason was!
Paul.
Monday, July 20, 2009
Filling the Bottomless Pit
Day 9 of 1,278
Just a quick note to thank everyone for the words of encouragement. Carson blazed through the procedures this morning with flying colors. We've been back in the room now for a couple of hours and haven't heard one complaint about pain from the bone marrow or spinal fluid samples. Like last week, the doctors also treated the spinal fluid with chemo.
Back in the room Carson had his yucky oral steroids and then had his chemo treatment. (What a trooper!) Again, there were no apparent adverse reactions. He is taking everything in stride. All I can say is he must get this from his mother's side of the family!
Carson's appetite still rules the day. He woke up before 5 this morning asking for pasta...which is what we were having when he fell asleep after 11 the night before! Unfortunately I couldn't give him anything...doctor's orders. He eventually went back to sleep, only to wake up at 7, absolutely famished! The hours between 7 and 10 - when the procedure started and they sedated him - were the worst. He was screaming out for food the entire time...something I'm sure he gets from MY side of the family!
Once he was awake and we were back in the room he ate like a trucker. His little mouth was chewing nonstop for over an hour!
Just a quick note to thank everyone for the words of encouragement. Carson blazed through the procedures this morning with flying colors. We've been back in the room now for a couple of hours and haven't heard one complaint about pain from the bone marrow or spinal fluid samples. Like last week, the doctors also treated the spinal fluid with chemo.
Back in the room Carson had his yucky oral steroids and then had his chemo treatment. (What a trooper!) Again, there were no apparent adverse reactions. He is taking everything in stride. All I can say is he must get this from his mother's side of the family!
Carson's appetite still rules the day. He woke up before 5 this morning asking for pasta...which is what we were having when he fell asleep after 11 the night before! Unfortunately I couldn't give him anything...doctor's orders. He eventually went back to sleep, only to wake up at 7, absolutely famished! The hours between 7 and 10 - when the procedure started and they sedated him - were the worst. He was screaming out for food the entire time...something I'm sure he gets from MY side of the family!
Once he was awake and we were back in the room he ate like a trucker. His little mouth was chewing nonstop for over an hour!
After eating the doctor came in to say she took a quick look at the bone marrow. The full results will be back tomorrow, but in the preliminary look she said the marrow looked really good...she couldn't definitively see any leukemia. What does this mean? Looks like the chemo is kicking butt! We'll share the full results when we have those back tomorrow.
Go Carson!!!
Paul.
P.S. We love the comments, please keep them coming!
Go Carson!!!
Paul.
P.S. We love the comments, please keep them coming!
Sunday, July 19, 2009
Round Two
Day 8 of 1,278
Carson continues to eat everything in sight. And when when he wants something that's not in sight, he demands it be brought to him immediately. He either has Czar-like tendencies (like his father) or it's the steroids. I think it's most likely the latter, but it may be a little of both.
His demeanor is not as pleasant as his usual self. Our "vacation" at the "hotel" is wearing thin and he is ready for a change in scenery. Not quite yet, buddy.
Carson has a big day tomorrow. At 10 in the morning the doctors will collect samples of bone marrow and spinal fluid. Thankfully he will be sedated for these procedures. Once that is done with he will undergo a second round of IV chemotherapy.
So...please keep Carson in your prayers. We are hoping the results show no leukemia in his spinal fluid (like last time) and a marked reduction or elimination of leukemia in his bone marrow. In other words, I'm praying for a big time leukemia butt kicking!
Go Carson!!
Paul
P.S. I found the "switch" so now anyone can leave a comment without logging in. (Operator error...I'm new to this blog stuff!) Please take a second to leave a comment and cheer Carson on!
Carson continues to eat everything in sight. And when when he wants something that's not in sight, he demands it be brought to him immediately. He either has Czar-like tendencies (like his father) or it's the steroids. I think it's most likely the latter, but it may be a little of both.
His demeanor is not as pleasant as his usual self. Our "vacation" at the "hotel" is wearing thin and he is ready for a change in scenery. Not quite yet, buddy.
Carson has a big day tomorrow. At 10 in the morning the doctors will collect samples of bone marrow and spinal fluid. Thankfully he will be sedated for these procedures. Once that is done with he will undergo a second round of IV chemotherapy.
So...please keep Carson in your prayers. We are hoping the results show no leukemia in his spinal fluid (like last time) and a marked reduction or elimination of leukemia in his bone marrow. In other words, I'm praying for a big time leukemia butt kicking!
Go Carson!!
Paul
P.S. I found the "switch" so now anyone can leave a comment without logging in. (Operator error...I'm new to this blog stuff!) Please take a second to leave a comment and cheer Carson on!
Friday, July 17, 2009
Preteen Help
Day 7 of 1,278.
So today we are going to answer the question: Just how much help can an 11 year-old be? Sounds like an easy question, right? Wrong. Einstein once set out answer this age old question. After being faced with so many unknowns he decided it would be easier to solve the mysteries of physics. At least that's what I read on Wiki.
As a father of a preteen I have witnessed first-hand how they can turn into zombies in front of the TV. (I'm sure I never was and am still not that way!) They will sacrifice life and limb for an Xbox, Wii, or a mobile phone...particularly the much coveted IPhone. And speaking of....is there a preteen out there who realizes that in addition to sending text messages mobile phones can be used to actually TALK to someone? But I digress. Perhaps that is a topic for another day.
Today Francesca left for Texas to spend a few weeks with family. I'm confident she will enjoy the succulent tastes of the finest Tex-Mex cuisine and partake in endless Xbox sessions with her cousins. That said, she will be sorely missed here. Despite her young age, Francesca has been a tremendous help to us and Carson. She has been here to lend a helping hand with the endless list of things to find, fix, and fetch. In addition to her title of Chief Helper, she has been the "Entertainment Director" for her little brother, helping him pass the hours and days here in the hospital.
Francesca's been a real trooper this past week and keeping up without her will be difficult. But now it's time to go and have some fun...have a great vacation Francesca!!
On the medical front:
Things are fairly quiet. Carson's numbers continue in to improve and the doctors are happy. (Like I said before...we like making the doctors happy!!) We had thought he would need a transfusion today, but the numbers came back and indicated we could hold off another day.
The steroids have turned him into a bottomless pit. He is constantly talking about food and asking for something to eat. Here's what this morning's menu looked like:
The Kraft EasyMac poster child.
I can't say enough about the people that have brought food for the family and presents for Carson. As I've said before, having a few minutes to talk with someone else is the best legal pick-me-up around. Well...Carson says it's really a tie between that and getting some new car toys. I guess it's all perspective. The comments on the blog and the emails have been a great encouragement. Please keep them coming!
Friends and Toys - is there a greater combo?
We are grateful that he is feeling so well, but anxious about what the coming weeks will bring as the cumulative effects of chemo become prominent. The road ahead is a rough one. It won't be easy. Please keep our little guy in your prayers!!
Paul.
So today we are going to answer the question: Just how much help can an 11 year-old be? Sounds like an easy question, right? Wrong. Einstein once set out answer this age old question. After being faced with so many unknowns he decided it would be easier to solve the mysteries of physics. At least that's what I read on Wiki.
As a father of a preteen I have witnessed first-hand how they can turn into zombies in front of the TV. (I'm sure I never was and am still not that way!) They will sacrifice life and limb for an Xbox, Wii, or a mobile phone...particularly the much coveted IPhone. And speaking of....is there a preteen out there who realizes that in addition to sending text messages mobile phones can be used to actually TALK to someone? But I digress. Perhaps that is a topic for another day.
Today Francesca left for Texas to spend a few weeks with family. I'm confident she will enjoy the succulent tastes of the finest Tex-Mex cuisine and partake in endless Xbox sessions with her cousins. That said, she will be sorely missed here. Despite her young age, Francesca has been a tremendous help to us and Carson. She has been here to lend a helping hand with the endless list of things to find, fix, and fetch. In addition to her title of Chief Helper, she has been the "Entertainment Director" for her little brother, helping him pass the hours and days here in the hospital.
Francesca's been a real trooper this past week and keeping up without her will be difficult. But now it's time to go and have some fun...have a great vacation Francesca!!
On the medical front:
Things are fairly quiet. Carson's numbers continue in to improve and the doctors are happy. (Like I said before...we like making the doctors happy!!) We had thought he would need a transfusion today, but the numbers came back and indicated we could hold off another day.
The steroids have turned him into a bottomless pit. He is constantly talking about food and asking for something to eat. Here's what this morning's menu looked like:
- a hot dog (the whole thing) - this was BEFORE breakfast
- a hot dog bun (a SECOND bun, that is)
- a waffle
- mac-n-cheese
- two small sacks of Cheetos
- two brownies
The Kraft EasyMac poster child.I can't say enough about the people that have brought food for the family and presents for Carson. As I've said before, having a few minutes to talk with someone else is the best legal pick-me-up around. Well...Carson says it's really a tie between that and getting some new car toys. I guess it's all perspective. The comments on the blog and the emails have been a great encouragement. Please keep them coming!
Friends and Toys - is there a greater combo?We are grateful that he is feeling so well, but anxious about what the coming weeks will bring as the cumulative effects of chemo become prominent. The road ahead is a rough one. It won't be easy. Please keep our little guy in your prayers!!
Paul.
Food, Medecine and Movies
Carson has been eating a lot! He has been having a different craving every day. Sometimes cheerios with milk. And other times hot dogs. He's even been asking for cupcakes. When thirsty or an after drink for medicine, he'll drink ginger ale. Most of the time he wants mac n' cheese. It's his all time favorite!
Hes been taking a medicine called allopurinol. He takes it at 6am, 2pm, and 10pm. It only takes a few minutes for him to take it. Carson says he takes it race-car fast!
Carson has been enjoying a bunch of movies. We have Beethoven, Bolt, Spiderman, Veggie Tales, and Shaggy Dog. The other day some friends gave him the mighty machines series. He likes that a lot!
It is sad to report that this will be my last blog for a while. I will be going to Texas on Saturday, July 18. Thank you to all that have been praying for Carson. Many of our prayers have been answered. There is still a long way to go. Please keep praying. Thank you!
Written by Francesca.
Hes been taking a medicine called allopurinol. He takes it at 6am, 2pm, and 10pm. It only takes a few minutes for him to take it. Carson says he takes it race-car fast!
Carson has been enjoying a bunch of movies. We have Beethoven, Bolt, Spiderman, Veggie Tales, and Shaggy Dog. The other day some friends gave him the mighty machines series. He likes that a lot!
It is sad to report that this will be my last blog for a while. I will be going to Texas on Saturday, July 18. Thank you to all that have been praying for Carson. Many of our prayers have been answered. There is still a long way to go. Please keep praying. Thank you!
Written by Francesca.
Thursday, July 16, 2009
Biding Time
First of all, another huge thank you to those who are praying on Carson's behalf. God continues to be so good to us during this time. It is amazing! How many prayers has just our family prayed in the last few days? We've asked for this, asked for that....and God has answered EVERY ONE of them with something positive. "Praise God from whom all blessings flow" - the first line of one of the many hymns I learned as a child.
Carson remains a "best case scenario" today. He is a little tired (which for him means he only did 10 races down the hospital hallway instead of 15), but doing very well. The percentage of leukemia cells in his body continues to drop. Hallelujah!
So now, we are officially biding our time until our next big treatment and test day. That day is Monday. Carson will undergo another round of IV chemotherapy. He'll also have a spinal tap to test the spinal fluid for leukemia cells and a chemo treatment in that area. Finally, he'll have another bone marrow test. Here we go again: please pray that Carson will be in remission. This will keep him at "best case scenario" status - and, as you might imagine, we're all about remaining at that status right now!
Thanks again to everyone who has brought food, brought gifts or brought themselves to the hospital. Thanks to those who have bought groceries, walked and fed dogs and driven Francesca around town. We are so grateful to each of you.
Here's a few pictures from the past few days:
Carson, mom and Grandma visit with Buford the therapy dog.
More visits from friends.....
Carson remains a "best case scenario" today. He is a little tired (which for him means he only did 10 races down the hospital hallway instead of 15), but doing very well. The percentage of leukemia cells in his body continues to drop. Hallelujah!
So now, we are officially biding our time until our next big treatment and test day. That day is Monday. Carson will undergo another round of IV chemotherapy. He'll also have a spinal tap to test the spinal fluid for leukemia cells and a chemo treatment in that area. Finally, he'll have another bone marrow test. Here we go again: please pray that Carson will be in remission. This will keep him at "best case scenario" status - and, as you might imagine, we're all about remaining at that status right now!
Thanks again to everyone who has brought food, brought gifts or brought themselves to the hospital. Thanks to those who have bought groceries, walked and fed dogs and driven Francesca around town. We are so grateful to each of you.
Here's a few pictures from the past few days:
Carson, mom and Grandma visit with Buford the therapy dog.
More visits from friends.....Stay tuned for more! I think Paul will be attempting video some time today!
-Jennifer
-Jennifer
Day 4 of Treatment and the Art of Racing in the Oncology Ward
The Pediatric Hematology/Oncology ward at Innova Fairfax hospital is shaped somewhat like a square. Total distance around: 0.048 miles. Carson covers this route countless times a day like it's his own backyard. Sometimes he sits back and let's me push while he "drives" the blue and yellow "race car". Other times he takes out the plasma scooter and rockets himself down the hallway. Chemo has definitely not stymied Carson's obsession with vehicles and speed!
Along three sides of the ward there are patient rooms and the nursing stations. On the fourth side, however, there are only a few offices and other miscellaneous rooms. The foot traffic on this side of the ward is less than the others....so that's where we hold the races! Carson belts out his best race car imitation, complete with tire squeals and horn. We speed down the hallway at breakneck speed, leaning into the corner as we come back around by our room.
Anyway, I write all of this to say one thing: To the lady who was standing just around the corner this morning - I'm really, really, really sorry we ran into you! (In the defense of myself and partner in crime, I have to add that at least we were already in the hospital had there been any serious injuries.)
I think I forgot to mention that Carson met the Art Therapist on Monday. Now, some of you may read that and get confused and ask yourself, "The Art Therapist? Is this the same Carson?" Yes, it's still the same Carson. No, he didn't take up coloring, making things with beads, or anything like that. We just needed some scissors to cut the play chainsaw out of the box and the Art Therapist happened to offer her pair when I asked. She came into the room to talk...only to discover the true nature of our request. Carson was quick on the draw (so to speak) to demonstrate how to properly use the chainsaw. (Stand back!) The Art Therapist seemed super nice. And I felt really bad that Carson expressed absolutely ZERO interest in all of the art activities she offered. But who knows? Maybe later in life he will want to create wood carvings using his chainsaw.
Carson discovers the mobile sand box Wednesday morning and puts the emergency vehicles to the test.
On the medical front, we didn't have as good of a day today as we have for the past two days, but it wasn't a total loss. Overall Carson is doing very well.
Brother and Sister sporting new Spiderman tatts.
Oh, obviously I ruffled a few feathers by "denying" Carson cupcakes the other day. (In my defense, I would like to point out that I had no cupcakes to "deny"...and it's not like he was "going without" and having to endure the pain of snacking on Skittles!) Nevertheless, several have taken it upon themselves to ensure this does not happen again. I'd like to thank you for your contributions. Francesca is now helping by giving us hits from her insulin pump.
Please keep the prayers for Carson coming!!
Paul.
Along three sides of the ward there are patient rooms and the nursing stations. On the fourth side, however, there are only a few offices and other miscellaneous rooms. The foot traffic on this side of the ward is less than the others....so that's where we hold the races! Carson belts out his best race car imitation, complete with tire squeals and horn. We speed down the hallway at breakneck speed, leaning into the corner as we come back around by our room.
Anyway, I write all of this to say one thing: To the lady who was standing just around the corner this morning - I'm really, really, really sorry we ran into you! (In the defense of myself and partner in crime, I have to add that at least we were already in the hospital had there been any serious injuries.)
I think I forgot to mention that Carson met the Art Therapist on Monday. Now, some of you may read that and get confused and ask yourself, "The Art Therapist? Is this the same Carson?" Yes, it's still the same Carson. No, he didn't take up coloring, making things with beads, or anything like that. We just needed some scissors to cut the play chainsaw out of the box and the Art Therapist happened to offer her pair when I asked. She came into the room to talk...only to discover the true nature of our request. Carson was quick on the draw (so to speak) to demonstrate how to properly use the chainsaw. (Stand back!) The Art Therapist seemed super nice. And I felt really bad that Carson expressed absolutely ZERO interest in all of the art activities she offered. But who knows? Maybe later in life he will want to create wood carvings using his chainsaw.
Carson discovers the mobile sand box Wednesday morning and puts the emergency vehicles to the test.On the medical front, we didn't have as good of a day today as we have for the past two days, but it wasn't a total loss. Overall Carson is doing very well.
- Today Carson's port tube pulled out a little bit. As a result, some of the fluid from his IV drip was going under the skin, and not into the port (and bloodstream). Not good. This had to be changed out immediately. Normally a new port is inserted after applying some numbing cream, but because we were changing out an existing port we couldn't apply the cream beforehand. The nurses and staff did their best to make this as painless and quick as possible. I think Carson would say the operate phrase here is "as possible," because is was still a grueling 25 minute ordeal. It goes way beyond being "not fun". You really don't want to have to do this. The nurses put in a new port tube with a slightly longer needle so we hopefully won't have to do this again.
- Around lunch (shortly after the port tube ordeal), Carson received another platelet transfusion. (The first transfusion was Saturday morning before surgery.) Like before, we were blessed with no negative reaction. Down the road the risk for reactions increases...and we anticipate we will need a fair number of transfusions.
- On the chemo front, Carson had his PEG Asparaginase injections today. These were given in the legs (one in each thigh) immediately following the platelet transfusion. Injections in both thighs at the same time is never fun, but unlike the port tube, at least it is quick. As with all the other medications, there are some serious side-effects which the nurses and doctors watch for. We are fortunate that none of those developed.
- The 0800 morning blood tests showed a white blood cell count of just over 3,500, with leukemia cells making up 37% of that number. We are heading in the right direction. Pray this continues.
- The next "big" day is going to be Sunday or Monday. That's when Carson will have more bone marrow and spinal fluid samples taken, as well as another round of chemo.
Brother and Sister sporting new Spiderman tatts.Oh, obviously I ruffled a few feathers by "denying" Carson cupcakes the other day. (In my defense, I would like to point out that I had no cupcakes to "deny"...and it's not like he was "going without" and having to endure the pain of snacking on Skittles!) Nevertheless, several have taken it upon themselves to ensure this does not happen again. I'd like to thank you for your contributions. Francesca is now helping by giving us hits from her insulin pump.
Please keep the prayers for Carson coming!!
Paul.
Tuesday, July 14, 2009
Tuesday Medical News
And now for the medical portion of the day.....brought to you by a worn out mother who can barely string two words together.
- Carson's white blood cell count has now dropped below normal. This is expected as the chemotherapy does its work. Around 40% of his white blood cells are now leukemia cells.
- All of other levels like uric acid, magnesium, phosphorous, blah, blah, blah are completely as the doctor's expected. This makes our doctor extremely happy and he says he doesn't think the treatment could be going any better than it has!
- The shots Carson must take as part of his treatment have been moved to Wednesday instead of Thursday.
- Carson received a blood transfusion today due to low red blood cell count. This is also expected due to his therapy. He had no adverse reactions and rode the plasma car all around the ward while getting it.
- The coveted prize for "World's Fastest Medicine Taker" has been given to Carson King. When interviewed the recipient informed us that it is all in the technique....swallow medicine immediately (especially that yucky steroid) and wash down with cold ginger ale! Having a reward of peppermint candy, skittles or cupcakes afterward doesn't hurt either. His parents are very proud.
Still Feeling Good
Carson seems to be doing better and better and better! He has been eating what the hospital has brought him to eat and has been taking the medicine like a pro! We've met many people here at the hospital. A little boy, an older boy and a little girl. The little girl got released from the hospital yesterday.
Carson, armed with his trusty chainsaw and a message of hope.
Carson has been watching Spiderman, one and three, and Veggie Tales. We've had many visitors. Most of them have been Carson's friends, parents friends and some have been my friends. Carson is very happy when people visit.
Thank you for everyone that has been praying. Carson is glad to be feeling better!
Written by: Francesca
Carson, armed with his trusty chainsaw and a message of hope.Carson has been watching Spiderman, one and three, and Veggie Tales. We've had many visitors. Most of them have been Carson's friends, parents friends and some have been my friends. Carson is very happy when people visit.
Thank you for everyone that has been praying. Carson is glad to be feeling better!
Written by: Francesca
Monday, July 13, 2009
Motormouth is Back
As our staff writer Francesca pointed out in this morning's report, Carson perked up considerably today. He started off a little groggy, but the steroids started to kick in by late morning and got him going.
One of the side effects of steroids is increased hunger - particularly strong cravings for sweets. Knowing this, of course, my next question is: Are the nurses slipping the rest of us steroids, too?? At one point after lunch Carson looked over and out of the blue yelled out, "I WANT A CUPCAKE!!!" We haven't had a cupcake in ages, so we're not sure where the heck that idea came from. Nevertheless, it got me thinking about cupcakes, too.
Fueling up on Frosted Flakes...make it a double!
This afternoon Jennifer and Francesca went home to take care of a few things - namely to switch out DVDs. While they were away Carson woke up from his nap and his activity switch was on FULL BLAST. Within minutes we were mobile - on the blue and yellow race car doing laps around the oncology ward. The poor lady trying to collect the dirty lunch trays...we must have nearly run her over 10 times. (Sorry!)
We made several trips to the helicopter bridge and the outdoor play yard. Carson rode the big wheel around the play yard until the battery on his IV drip monitor died. Fortunately the nurses did not get upset. Back in the room...and back on a/c power...Carson was unrelenting. He plowed through his mac-n-cheese and a dinner roll like he hadn't eaten in days. Which is all basically true...he hasn't eaten much for the past week, really.
And did I mention the motormouth? It's back. He was talking nonstop - which is exactly what he does when he's feeling good. He seemed to feel better today than he has in a couple of weeks.
Future yard maintenance superhero. The newly arrived chainsaw and goggles are liberated from their toys-r-us box and prominently put on display for all to see.
In medical news, here's where we stand 72 hours after diagnosis:
And if you are wondering if we gave in and got Carson a cupcake, the answer is NO. What kind of parents do you think we are? We got him some Skittles, instead.
Paul.
One of the side effects of steroids is increased hunger - particularly strong cravings for sweets. Knowing this, of course, my next question is: Are the nurses slipping the rest of us steroids, too?? At one point after lunch Carson looked over and out of the blue yelled out, "I WANT A CUPCAKE!!!" We haven't had a cupcake in ages, so we're not sure where the heck that idea came from. Nevertheless, it got me thinking about cupcakes, too.
Fueling up on Frosted Flakes...make it a double!This afternoon Jennifer and Francesca went home to take care of a few things - namely to switch out DVDs. While they were away Carson woke up from his nap and his activity switch was on FULL BLAST. Within minutes we were mobile - on the blue and yellow race car doing laps around the oncology ward. The poor lady trying to collect the dirty lunch trays...we must have nearly run her over 10 times. (Sorry!)
We made several trips to the helicopter bridge and the outdoor play yard. Carson rode the big wheel around the play yard until the battery on his IV drip monitor died. Fortunately the nurses did not get upset. Back in the room...and back on a/c power...Carson was unrelenting. He plowed through his mac-n-cheese and a dinner roll like he hadn't eaten in days. Which is all basically true...he hasn't eaten much for the past week, really.
And did I mention the motormouth? It's back. He was talking nonstop - which is exactly what he does when he's feeling good. He seemed to feel better today than he has in a couple of weeks.
Future yard maintenance superhero. The newly arrived chainsaw and goggles are liberated from their toys-r-us box and prominently put on display for all to see.- The noon blood tests today came back with a white blood cell count of 14,900, 47 % of which is leukemia. 24 hours earlier, a few hours before the chemo treatment, he had a white blood cell count of 177,000, 86% of which was leukemia. This is a huge drop and made the doctors VERY happy...and I like it when they are happy. Pray this continues.
- A slight correction to the first post on how long we will be in the hospital. The "best case scenario" is 7 - 10 days. Usually it's more like 20 - 30. It's really hard to say because it all depends on how well Carson is doing. His immune system is shot. Little did we know he probably hasn't had any normal white blood cells in his body for the last couple of weeks. Infections and fevers are common side effects during the treatment. Please pray we these side effects will be few and far between.
- So far Carson has been able to tolerate all the different medications...and we pray it stays that way. Even the nurses marvel at how well Carson takes the incredibly yucky oral medications. (I know I would not be nearly as cooperative!) As anticipated, Carson's hemoglobin and platelet levels have dropped. Sometime in the next 24 hours he will probably require a transfusion to boost those numbers.
And if you are wondering if we gave in and got Carson a cupcake, the answer is NO. What kind of parents do you think we are? We got him some Skittles, instead.
Paul.
Perkin' Up
Today, Monday, Carson's white blood cell counts went down to 14,000! He has been going out of the room more, and feeling somewhat better. His steroids have been making him have more of an appetite. When I got back from my vacation bible school, Carson was eating chicken noodle soup. The lady who brought me from VBS to the hospital, stopped by a Wendy's to get lunch. When I got into the room Carson smelled the french fries and asked for some. He's been eating some skittles and asking for cupcakes. He has been enjoying the movie The Shaggy Dog and loving the plasma car. The plasma car is a car that doesn't have pedals. You move around by moving the steering wheel. Yesterday we got Carson two balloons. A Get Well balloon and a Smiley Face.
Thank you to everyone who has been praying and please keep praying for Carson's leukemia to go away. And a thank you to everyone who has visited us in the hospital and helping us out.
Written by Francesca
Thank you to everyone who has been praying and please keep praying for Carson's leukemia to go away. And a thank you to everyone who has visited us in the hospital and helping us out.
Written by Francesca
Monday morning
Carson slept really well last night, but is still very tired. He did want to leave his hospital bed though, so he is on the fold out chair dozing in and out as he watches Curious George and Beethoven.
The midnight labs are back and Carson's white blood cell count has plummeted to 27,000! Since Friday the numbers have fallen from over 200,000. It is good news. We are incredibly grateful that God continues to answer one prayer at a time.
Speaking of prayer, many of you have asked for specific things for which to pray. Here is another. On or about Thursday, as part of his chemo, Carson will have a shot to which leukemia patients can have a severe allergic reaction. We are praying for no reaction. We want to stay with standard (we read "best") protocol.
We'll update more later. We have had a busy morning - Paul took Francesca to Vacation Bible School. The residents have been by the room to discuss Carson's treatment, we've met a new hematologist oncologist and we're going to be giving a few more meds any minute now!
Jennifer and Paul
The midnight labs are back and Carson's white blood cell count has plummeted to 27,000! Since Friday the numbers have fallen from over 200,000. It is good news. We are incredibly grateful that God continues to answer one prayer at a time.
Speaking of prayer, many of you have asked for specific things for which to pray. Here is another. On or about Thursday, as part of his chemo, Carson will have a shot to which leukemia patients can have a severe allergic reaction. We are praying for no reaction. We want to stay with standard (we read "best") protocol.
We'll update more later. We have had a busy morning - Paul took Francesca to Vacation Bible School. The residents have been by the room to discuss Carson's treatment, we've met a new hematologist oncologist and we're going to be giving a few more meds any minute now!
Jennifer and Paul
Sunday, July 12, 2009
Day 1 of Treatment
Note to Carson's Leukemia cells: We've got your number and are coming after you!
Today we are beginning a new chapter. At around 1230, less than 48 hours after walking into the ER, Carson started his first wave of chemotherapy. This is the induction period and will last 30 days. In my book, the previous 24 hours of endless tests was simply preparatory ground work for the counter-offensive. We are now officially at war. Time to kick some leukemia butt!
Before I jump into the highlights of the day, let me first pass on a few notes about visitation. Now that treatment is underway and Carson is more susceptible to the various germs we carry around, we need to be extra careful about visitation. VISITORS OF ALL AGES ARE STILL WELCOME and ENCOURAGED. Please note the following rules:
Planes, Trains, and Automobiles. We've got 'em all.
Now back to the highlights of the big day today:
I can't say enough great things about our doctor. He is on top of his game when it comes to leukemia, yet can relate to his young patients like he's one of them. He puts Carson at ease in an instant and has the energy of the Duracell bunny. We are fortunate that he will be Carson's oncologist throughout treatment. And when it comes to outpatient visits we will visit him at his practice...which interestingly enough is located in the same building as Francesca's pediatric endocrinologist. Did I mention that the oncologist is also a Type I diabetic? I won't say this is too weird...but it's getting close.
Paul.
Today we are beginning a new chapter. At around 1230, less than 48 hours after walking into the ER, Carson started his first wave of chemotherapy. This is the induction period and will last 30 days. In my book, the previous 24 hours of endless tests was simply preparatory ground work for the counter-offensive. We are now officially at war. Time to kick some leukemia butt!
Terrorizing the ward on the plasma scooter!
Before I jump into the highlights of the day, let me first pass on a few notes about visitation. Now that treatment is underway and Carson is more susceptible to the various germs we carry around, we need to be extra careful about visitation. VISITORS OF ALL AGES ARE STILL WELCOME and ENCOURAGED. Please note the following rules:
- If you are sick, please stay home. It's not that we don't want to see you. It's we don't want to catch you.
- If you have had any cough or sneeze or some form of malaise in the past two weeks, we will ask you to wear a surgical mask.
- EVERYONE will be required to copiously apply hand sanitizer prior to entering our room. For your convenience (and Carson's health), hand sanitizer is conveniently located in the hallway next to our door and is provided FREE of charge. What a deal!! If you have some sort of hand sanitizer phobia, this place isn't for you.
Planes, Trains, and Automobiles. We've got 'em all.Now back to the highlights of the big day today:
- During yesterday's surgery the doctors took a sample of Carson's spinal fluid. The tests came back today - NEGATIVE for leukemia!! Spinal fluid is an area where leukemia can hideout during chemo, so not finding any bad cells there now means the treatment is somewhat more straight forward.
- All-in-all the first round of chemo seems to be going very well. There are oral and IV medications. The true chemo IV was administered around 1230 and everything went like clockwork. Well, everything was clockwork except for the evening oral meds. He was tired and cranky and I'm sure the meds tasted like...well, bad...so that took some work. But I'm not complaining. We couldn't have asked for anything better.
- Carson's super high white blood cell count is still super high, but down about 20%. And that's just with fluids. His uric acid is back in the normal range. His platelet levels are below normal right now, but are considered high for leukemia patients. What's all this mean? So far, we seem to be right on track.
I can't say enough great things about our doctor. He is on top of his game when it comes to leukemia, yet can relate to his young patients like he's one of them. He puts Carson at ease in an instant and has the energy of the Duracell bunny. We are fortunate that he will be Carson's oncologist throughout treatment. And when it comes to outpatient visits we will visit him at his practice...which interestingly enough is located in the same building as Francesca's pediatric endocrinologist. Did I mention that the oncologist is also a Type I diabetic? I won't say this is too weird...but it's getting close.
Paul.
Faith, Family, and Friends
"How are you guys holding up?" We hear it often, in some form or another, and it's probably the same question I would ask if I were visiting someone in the hospital. In fact, I'm sure I'd ask it. Problem is, I'm not quite sure how to answer it. "We're hanging in there," I think is our normal response. And it's true, we are hanging in there. Isn't that what most people say? I'm not sure what the alternative would be...maybe that's a good thing.
Carson on the morning after being diagnosed, before heading off to surgery.
Deep down, however, the truth is we are scared. We don't want our little guy to have to go through this and we don't like the potential outcomes (even if those "outcomes" surround us everyday).
Earlier today we were handed a thick binder titled The Family Handbook for Children with Cancer. One glance at the title and the emotional roller coaster goes into a free fall. Yeah, I didn't have that one on my must read list! Nevertheless, we have to put on our armor and prepare for battle. Carson already has. Emotional roller coaster aside, Mom and Dad have to suit up, too.
Carson's buds swing by on Saturday for a tour...and are impressed by the number of toys. There's even a Wii in his room!
The good thing is we are surrounded by faith, family, and friends. We have had a steady stream of visitors - and for that we are forever grateful. There's no better pick-me-up than friends. Not even Starbucks can top that. (Okay, I realize some of you may dispute that point, but you're wrong!)
The cards, gifts, and offerings of assistance are all greatly appreciated and have been too many to count. Right now, however, there's just not a whole lot to do. We eat and sleep right here at the hospital. Home is a short 15 minutes away...and that's WITHOUT speeding. Even the "other children" (aka dogs) have a doggy door.
I don't think anyone is really ever prepared to take on leukemia. I know we sure aren't. But all things considered, it could be a whole lot worse.
Paul.
Carson on the morning after being diagnosed, before heading off to surgery.Deep down, however, the truth is we are scared. We don't want our little guy to have to go through this and we don't like the potential outcomes (even if those "outcomes" surround us everyday).
Earlier today we were handed a thick binder titled The Family Handbook for Children with Cancer. One glance at the title and the emotional roller coaster goes into a free fall. Yeah, I didn't have that one on my must read list! Nevertheless, we have to put on our armor and prepare for battle. Carson already has. Emotional roller coaster aside, Mom and Dad have to suit up, too.
Carson's buds swing by on Saturday for a tour...and are impressed by the number of toys. There's even a Wii in his room!The good thing is we are surrounded by faith, family, and friends. We have had a steady stream of visitors - and for that we are forever grateful. There's no better pick-me-up than friends. Not even Starbucks can top that. (Okay, I realize some of you may dispute that point, but you're wrong!)
The cards, gifts, and offerings of assistance are all greatly appreciated and have been too many to count. Right now, however, there's just not a whole lot to do. We eat and sleep right here at the hospital. Home is a short 15 minutes away...and that's WITHOUT speeding. Even the "other children" (aka dogs) have a doggy door.
I don't think anyone is really ever prepared to take on leukemia. I know we sure aren't. But all things considered, it could be a whole lot worse.
Paul.
Night Moves
Carson had a fairly restful night last night. They were able to draw blood from his port twice - no pain and no waking him up - Yea! The first labs came back looking very good to start chemo, but we are still waiting to hear the results of the 6 AM test.
I signed all the paperwork to let them proceed with the chemo as soon as they're ready. Initial and date every page, sign on the dotted line at the end. "More paperwork than buying a house" is the way the doctor put it.
It is now 9 AM and Carson is up, has eaten two graham crackers and half a banana. He said right away that his throat is feeling better (it was sore yesterday from the tube they inserted during his surgery), but he is low on energy as you might imagine. He's still receiving a small amount of oxygen, but I'm told once his body gets over the anesthesia he'll be able to go without it.
.......15 minutes later.......Doctor just came in with some more paperwork, but after that he told us that Carson's spinal tap test was negative!!!! No leukemia cells in the spinal fluid! Thank you God for yet another prayer answered.
And thank you everyone for your continued prayers and offers of help. We are so grateful.
Jennifer
I signed all the paperwork to let them proceed with the chemo as soon as they're ready. Initial and date every page, sign on the dotted line at the end. "More paperwork than buying a house" is the way the doctor put it.
It is now 9 AM and Carson is up, has eaten two graham crackers and half a banana. He said right away that his throat is feeling better (it was sore yesterday from the tube they inserted during his surgery), but he is low on energy as you might imagine. He's still receiving a small amount of oxygen, but I'm told once his body gets over the anesthesia he'll be able to go without it.
.......15 minutes later.......Doctor just came in with some more paperwork, but after that he told us that Carson's spinal tap test was negative!!!! No leukemia cells in the spinal fluid! Thank you God for yet another prayer answered.
And thank you everyone for your continued prayers and offers of help. We are so grateful.
Jennifer
Saturday, July 11, 2009
The Verdict
Do you ever have one of those days where you just can't remember anything that was thrown at you? I feel like we are in a one-day crash course of Advanced Studies in Leukemia. Information is coming at us from all directions, critical decisions must be made, and I still can't find my way from the cafeteria back to our room. (That's no joke!) This is by no means meant to mock or disrespect the work of the doctors and nurses who are doing amazing work that most folks like me could never handle. It is just the nature of the beast. There is a three year-old who is suffering, it's a complicated issue, and he's not going to get any better until we take some action.
I'm sitting here in the hospital room with Carson sawing logs only a few feet from me and I'm still processing everything that's happened today. Let me summarize events of the last 24 hrs:
If we follow the typical treatment path (please pray that we do!), we will most likely be in the hospital for 7 - 10 days. After that, the treatments will be outpatient and the chemo will be in lower doses.
Day 1 of the 30 day "induction" period was supposed to start today...well, actually tonight. However, with the anesthesia taking longer to wear off, looks like we will be starting tomorrow.
I realize this is long and contains a lot of info...if you don't read anything else, I hope you see this: We need your continued prayers! We still have a long, long way to go.
Thanks!
Paul
p.s. Just want to put a plug in for the doctors and nurses here at Innova Fairfax...I realize we've only been here for a little more than 24 hours (which I can hardly believe!), but the staff here has been absolutely amazing! They are very much focused on Carson - curing him and comforting him. And that's our top priority.
I'm sitting here in the hospital room with Carson sawing logs only a few feet from me and I'm still processing everything that's happened today. Let me summarize events of the last 24 hrs:
- After I left last night Carson endured three more blood draws. These were all excruciatingly painful, his veins collapsing frequently, and the technician (aka vampire!) digging to find enough blood for the numerous tests.
- He received a platelet transfusion and a treatment for uric acid buildup. Don't ask me the name of the medication used to treat for the uric acid buildup...but nausea and vomiting are frequent side-effects. The important piece of information to take away here is that NEITHER of these treatments bothered him and BOTH were successful in accomplishing what they were meant to do. (One prayer answered.)
- The results of the type of leukemia came back - he has the A-L-L type! (Two prayers answered.) Within the A-L-L category, there are two subtypes - a B cell version and a T cell version. The B cell version is more common and the easiest of all to treat. The T cell version is slightly less common and somewhat tougher to treat. Carson has the T cell version. (Hey, why make this easy?)
- With the type of leukemia nailed down, we were able to proceed with surgery to insert a center line port. This will allow the nurses to draw blood and administer chemo (or other IV treatments), without having to dig for veins. Pretty cool, huh? I sure think so. During the surgery the oncologist took bone marrow samples from Carson's hip and fluid from his spine. While he was in there, he also treated the spinal area with chemo. Apparently chemo administered through the bloodstream doesn't come into contact with spinal fluid, so this was like an opportunity for one-stop shopping. The surgery only lasted about 45 minutes and went very smoothly. (Three prayers answered!) Carson had a few problems coming out of the anesthesia, but after a while was able to pack away a banana and some ginger ale.
If we follow the typical treatment path (please pray that we do!), we will most likely be in the hospital for 7 - 10 days. After that, the treatments will be outpatient and the chemo will be in lower doses.
Day 1 of the 30 day "induction" period was supposed to start today...well, actually tonight. However, with the anesthesia taking longer to wear off, looks like we will be starting tomorrow.
I realize this is long and contains a lot of info...if you don't read anything else, I hope you see this: We need your continued prayers! We still have a long, long way to go.
Thanks!
Paul
p.s. Just want to put a plug in for the doctors and nurses here at Innova Fairfax...I realize we've only been here for a little more than 24 hours (which I can hardly believe!), but the staff here has been absolutely amazing! They are very much focused on Carson - curing him and comforting him. And that's our top priority.
Day Zero
We never had given much thought about starting a blog...until today. Sending out email after email on the on the adventures of our family is sooo passé. Isn't there a better way to do things? Enter the blog.
Friday - yesterday - was a big day for us...and not in a good way. Carson, our three-year-old son, hadn't been acting quite the same, so we took him to the doctor. After a quick and polite exam at the doctor's office, however, they sent us to the ER. Um...no quick fix, like usual? Maybe some antibiotics?
At the ER we were admitted rather quickly - thanks to a call ahead by our physician. The ER staff took what seemed like a gazillion blood samples (we really have that much stuff in us?) and after a couple of hours of lab work, we were told we were dealing with leukemia.
Jennifer and Francesca, our 11 year-old daughter, were all there together. It was like a ton of bricks hit us all. I'm not sure how long it was before we could breathe again. Despite this being completely devastating news and going through some nasty blood draws, Carson was the one who was holding up strong.
Carson enjoying the 2009 Easter egg hunt.The staff in the ER were sympathetic and helpful. After that things started to move quickly. We were introduced to a hematology oncologist and inundated with information on leukemia. (I couldn't even spell leukemia!) I walked away with this: There are two forms of acute leukemia - ALL and AML, and ALL is generally easier to treat.
First things first, we had to address Carson's high white blood cell count and boost his platelets. He received a platelet transfusion during the night as well as fluids to flush his system from the remains of the many dead white blood cells. Once that is done, he will undergo surgery for a center line port - a surgically installed port to draw blood and administer fluids (including chemo).
Needless to say, we will be spending most all of our time at Fairfax hospital for the foreseeable future. As for now, please pray for the "easier" of the two forms of leukemia to treat...ALL...and for comfort for Carson!
Thanks to all of our chaotic friends and family out there!
Paul.
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