Jedi Knights of the Oncology Clinic

Carson made back to the clinic on Friday for another round of chemo. He continues to do well, although he's really tired.

We are often asked if we get tired of going to the clinic so frequently. Sometimes we do, but amazingly many times it's something to look forward to. Except for the "pokes", Carson seems to enjoy going. Like the hospital, the clinic is one of the few places where he can (sometimes) play with the other kids. And at four years old, it's all about the playing!

Here are some highlights from our visit this past Tuesday:

Check out Carson, Riley, and Elton as they train for their next Jedi mission.

Paul.

What if...

Day 201 (can you believe it?) and still going strong.

PEG Shots...check.

We made it to the clinic on Tuesday for blood work and the dreaded PEG shots. And they were indeed, dreaded. The good news is Carson's buds were there and they had a great time playing while the blood work was in the lab.

But the labs were fine and we once again escaped a transfusion. If we could have only escaped the PEG shots. I held Carson's legs while Jennifer pinned down his shoulders. Two nurses simultaneously administered the shots deep into his thighs. The screams were so loud my ears are still ringing. And that was just Jennifer trying to hold him down!

The good news is he probably won't remember any of this in a few years.

What if...

So Jennifer and I are sitting here watching the State of the Union address. As the President walked in we couldn't help but notice all the dark suits. We couldn't help but think of what the scene would look like where we lived previously - South Florida. And then the jokes and jabs started coming.

The State of the Union address...South Florida style:

• For guys: Gray suits would be replaced with 300 dollar jeans, brown sandals, and a loose button down shirt. Un-tucked, of course.

• For the gals: the loudest print blouse you can imagine...purchased in the children's department and most likely worn without the proper supporting undergarments.
  

• While waiting for the president to arrive, members of both houses could discuss their most recent tattoos and/or plastic surgery.
  

• Although scheduled to start at 9pm EST, in South Florida the President wouldn't arrive until 9:30 at the earliest, and that is just for the Spanish version; the English version would be later!
  

• Minutes into the President's speech, a cell phone would ring. No, make that, two cell phones...and both would be answered and long conversations would ensue.

You get the idea. So ends another evening. We're glad Tuesday is over, but Friday is looming on the horizon. Chemo again.....

Paul.

Day 198 and counting...

Way to go Mr. Lands!

After raising money to fight leukemia, Francesca's teacher burns up the course at the 2010 Disney Marathon. And here are the pics to prove it!

Gotta love that customized singlet!

Thanks, Mr. Lands, for running in honor of Carson and helping the fight against leukemia!!

Carson is doing well.

Delayed Intensification kicked off last Friday with a spinal tap and chemo flush. Just as usual, Carson came through like a champ. He tolerated the spinal procedure, although he was more coherent this time around than any of the previous times. Normally, being coherent is a good thing, but not for a four year old with a needle in his back.

As far as chemo goes, Carson had a methotrexate flush (spinal), vincristine, and then doxorubicin. I wouldn't be surprised if he glows in the dark for a few hours after treatment.

Friday also marked the start of a new round of steroids - dexamethasone - twice a day for the next week. Steroids are a tough one to take. We crush the tablets, dilute them with water and mix with an abundant amount strawberry flavoring in an effort to cover the bitter taste. We experimented with different mixture levels last July and I think we finally have the right recipe. Carson hasn't complained a bit. Add it to the praise list.

In other news...

Saturday we headed up to Westminster, MD to visit with a good friend from Florida. It was great to get out of the house, take a short road trip, and visit with friends.

And then on Sunday we celebrated the first anniversary (and sixth birthday) of our adopted dog Shade. She celebrated with a little brownie and a Frosty Paw.

Tuesday...it's back to the clinic.

We head back to the clinic on Tuesday for chemo injections...one in each thigh. Not fun at ALL. Please pray things go as smoothly as possible on Tuesday.

Paul.

Wednesday Counts

Day 194 of our war on leukemia!

Just a quick note to say all is going well between phases. Carson had a quick clinic visit on Wednesday to check his blood counts. All his numbers were up, which means we'll be starting the next phase of chemo on Friday.

Bye-Bye Hair

This next phase is called Delayed Intensification and is 63 days long. As its name implies, it is a heavy round that calls for various chemo treatments. Carson has just started to realize his hair is gone - asking, "What happened to my hair?" The little peach fuzz hairs that have started to grow back over the last month will most likely fall out during this round.

This phase kicks off with a spinal lumbar puncture - where they flush his spinal area with chemo. As you can imagine, it's not a fun procedure. He'll also be getting two other chemo "pushes" through his port, one of which he hasn't had before.

Keep up the prayers!

Please keep Carson in your prayers as we enter this next phase. We pray that he responds well to the chemo and doesn't have any adverse reactions (other than the hair). We also pray that he continues to feel and act like the four year old boy that he is.

Paul.

Counting the Blood

Awhile back we wrote about counting our blessings. We still do that, but we also count the blood - or rather, the lab does it for us. We went to the clinic yesterday for a "counts check" and things looked great. Carson had an ANC of over 3,000 and did not require any blood or platelet transfusions.

Since the blood determines our schedule, we determined with such a high count that we could go out for lunch. Then we determined that ice cream afterward would be good as well. And...after that, thanks to the weather, Carson even got to play outside....you talk about a happy boy!

Our next visit to the clinic is January 20 and then the next phase of treatment will start January 22 (if his counts are still high enough). Treatment is scheduled to last for 9 weeks and continues regardless of blood counts until Day 29 (when he'll have to have a certain blood count in order to continue). Then, on or about day 50 he'll also begin some rounds of cranial radiation.
The good news is that we have no scheduled hospitalizations!! We can do it all at the clinic, then come home; which will be MUCH nicer.

So for now, no scheduled chemo...just as much fun as we can have between now and the 22nd.

It's Over

Home Again.
Round 4 is now over; and with that, so is the Interim Maintenance phase of treatment. We made it home about 7:00 this evening...and yes, if you're wondering; we made it home in 4 days instead of 5 this time.

Carson is tired, but he's feeling good. It is Grandma and Paul who aren't feeling good. It seems they've caught some sort of 24 hour bug. They're staying away from Carson for now and we're hoping that "the bug" stays away from him.

What's Next?
We head to the clinic on Wednesday to check blood counts and find out more about the next phase of treatment. This much we do know: The next phase is Delayed Intensification and will be similar to the first month of treatment, that is, it will be intense. It will also include some cranial radiation. When exactly it will begin remains to be seen. We have the rest of this week off at least.

Thanks again to everyone for everything you've done through this latest round. I think we have CFS (Chemo Fatigue Syndrome) or TVDS (Tired of Visiting Doctors Syndrome) or WWCSWAGGODSS (Wish We Could Stop Worrying About Germs and Go Out and Do Something Syndrome) Whatever you call it, your blog comments, kind words, favors and prayers help us more than you know.

-Jennifer

Round 4 Update

Round 4 is progressing more smoothly now. We moved into a private room about 10:30 PM on Friday evening and Carson got some much needed rest. There are others who are not so lucky and we're thankful that they decided to apply grease to our squeaking wheel first.

The chemo finished about 4:30 PM yesterday; and as before, Carson has not experienced much in the way of side effects. So far, just the appetite is down.

Yesterday we also began the juggling act of getting Francesca to/from a swim meet and today will be the same thing. We are thankful to have Grandma here as an extra set of hands and swim team friends!

Please continue your prayers for Carson as he completes his treatment; and please add prayers for the rest of our neighbors on this hospital ward. This week we've received news on both sides of the good/bad spectrum from friends we've made since diagnosis. One friend's PET scan shows the cancer gone, another friend now in remission, and another friend has experienced a relapse after 2 1/2 years cancer free. We are overjoyed for the one and heartbroken for the other...thankful to God for the healing and on our knees in petition for the other.

-Jennifer

Round 4 Begun!

Round 4 HDMTX began about 4:30 this afternoon. All going well so far, but we still have the ongoing drama of the room. That is, we don't have one. We have, however, been promised that we'll have our own room after a discharge they are expecting some time this evening.
Please pray that is sooner rather than later. Carson is exhausted and as a result, so are we!

-Jennifer

Round 4...and still at home?

Our Team in Training super heroes, Kathleen and Brad, are in Orlando and getting ready for the big run this weekend. Please join us in wishing them a super-fast and fun race. Thanks for running and raising money to help Carson and his buds with leukemia! Carson has this message for you:

Carson was back at the clinic today and his ANC was up to 816. We only need a 750 to start round 4, so start round 4 is what we did. Finally, yeah!!

Everybody was doing the happy dance...but then there was a snag. For some reason there were no rooms available at the hospital, so Carson hooked up to fluids at the clinic to start his pre-chemo hydration. Around 4 o'clock we finally got word the hospital was ready, so off we went.

Once we got to the hospital, however, we discovered the 'snag' was still there. There was a bed...but we would have to share the room. Semi private rooms for kids with cancer is not a good thing. Think of this...2 patients plus 2 adults, both patients undergoing chemo, getting up all through the night, chemo side effects, nurses in and out constantly...it's not a pretty picture. So, after talking with the doctors we decided to come home instead.

We're rolling the dice. The plan is to spend the night at home and head back to the hospital tomorrow. There's no guarantee we'll have a room, but at least we'll have a good night's rest before starting chemo.

Please pray for Carson's upcoming treatment...and for patience for Jennifer and I. Our patience tank is running on empty. Carson, on the other hand, is taking things in stride. As long as he has some cars to play with, things are just fine. Sometimes it would be nice to have the ability to transform into the world of a 4 year-old. Of course, Jennifer would say sometimes I do!

Paul.

Still At Home

So much for making it to the hospital today. Carson did not start his 4th and final round of high dose methotrexate as expected because his ANC count was too low. That pesky ANC!!

We came home and opened a new toy that was really meant to keep him busy in the hospital. Since we really shouldn't be going out to public places, we needed it to keep him busy at home instead.

Thursday we will try again to make it to the hospital.

-Jennifer