Let Round 6 Begin

Round 6
Maintenance Cycle Round 6 officially began yesterday for Carson with a spinal tap, chemo, IV antibiotics and the start of steroids. The ANC count was up in the 800's, so it is also time to restart 6MP and oral methotrexate.

Before that though, we had another busy weekend, a swim meet and some fun stuff.

Last Saturday, we attended the Growing Hope picnic and were treated to all kinds of great things....food, gifts, friends and play time. Carson had been home with low counts, so getting outside and seeing some of his friends was a terrific treat.

We continue our total admiration of Growing Hope and the wonderful support they provide!

Carson and his buddy Jack battle it out with balloon swords. The battle only stopped when one sword or the other popped and a return visit to the balloon lady was necessary!

A brief time out to pose with pal Jade!

Now back to the clinic yesterday......

The spinal tap went smoothly, the only hard part was waiting until 11 to actually get started. You see, there were Legos on the line, fire truck Legos in fact. Take that, the later start time and a boy with no food or drink and you have a rather unpleasant combination. We survived though and Carson started right in on building the fire truck as soon as his port was accessed.

Like I said, the spinal tap went smoothly, "happy juice" was welcomed by Carson's usual giddy smile of anticipation; and as soon as he was allowed to sit up again....the Lego fire truck building commenced - again.

Neither sleet, nor snow, nor chemo, nor IV antibiotics will stop us from building!

To top it off, right before we left the clinic, Carson lost his second tooth.

Have a great Memorial Day Weekend!
-Jennifer

Neutropenic

A quick blood draw at the clinic today revealed that Carson is neutropenic (ANC under 500), manual count was 480 - that's the one not done by the machine and is always higher than the automatic.

Hold methotrexate and 6MP

We are home, home, home until the 26th...our next visit to the clinic.

-Jennifer

Hidden Talents

Our children have some hidden talents you may not know about. Does your child do this??

Take medicine without waking up?
Wake up later (say 3AM), come in to your bedroom and ask "Did you give me my medicine?"

Never wake while receiving a finger prick?
Drink an entire juice box without waking?

Perhaps if your child is taking 6MP or diabetic they do have these talents.

Carson has recently begun taking his 6MP about 10 at night, after he has been asleep for a few hours. This is the medicine where one cannot eat at least an hour before and after. Since the boy won't quit eating, we have been giving it after he goes to sleep. At first it was a little hard to get him to take it, but now we know Carson has honed his skill so well that he doesn't even remember taking it. Thus the question, "Did you give me my medicine?" The answer, by the way, was yes.

Of course Francesca is a seasoned pro, having had years and years of practice sleeping while meters, pumps, juice boxes and people sound off and scuttle about.

I think these are some rare talents; but I don't think you'll be seeing them on "America's Got Talent" any time soon!

-Jennifer

Legos and Teeth

Legos

Today's clinic visit was a testament to the power of Legos. Last week, with a Lego prize in hand, Carson allowed his port to be accessed with ease. This week, with another Lego prize in hand, Carson endured his finger poke with barely the slightest peep! ....and now we have the Lego police helicopter all built!

Sorry for the blur on this photo....I was using my phone to take it
and the subject was not that cooperative!

The ANC takes a fall...
Carson's ANC took a nosedive from 4000 two weeks ago to 730 today. Medications will remain the same; only this time, we'll go back to the clinic in one week to check counts again. This will give us a better idea of whether we've gotten close to that magic dosage, or whether we need to modify them again.

Other than the descent of the ANC, things are going very well. We avoided the hospital for all of April and Carson is feeling great. He even lost his first tooth!

We sure are thankful to reach milestones like this!
(and tomorrow we register for Kindergarten!!)
Note: Carson did not scare the tooth fairy off with this face. She visited anyway.

-Jennifer

More Fun at Ocean City

We were fortunate enough to be invited to the Believe In Tomorrow House by the Sea this last weekend. The occasion: The Believe In Tomorrow Gala. We were treated to a great dinner, live music and dancing. You can guess what we did....EAT!

Carson was on day 3 of steroids and immediately went to work on the chocolate fondue fountain complete with cookies, marshmallows and fruit for dipping. Francesca wasn't far behind, despite the fact that she does not have steroids as an excuse.....


We watched in awe during the fundraising portion of the Gala as the Ocean City community came together in their continued support of Believe in Tomorrow. There must have been 100 silent auction items garnering thousands of dollars; and the live auction portion was even more unbelievable. Thanks Ocean City and Believe in Tomorrow for your wonderful support!! We are truly appreciative!


We spent the rest of the weekend relaxing and going to the beach.


Carson's main focus was digging.





Francesca's main focus was "lounge-ing" and collecting sea shells.


On Saturday night we were once again treated to a TERRIFIC dinner, this time at Mancini's on Fenwick Island. Carson walked away with Star Wars toys from Mrs. Mancini and his very own chef hat (after creating and baking his own wood-fired pizza).

Jason helps Carson with the pizza cutter.

The perfect activity for a steroid boy.

Carson takes time out from eating to pose with Mr. Mancini.

On the way home the next day, Carson refuses to take his chef hat off and sleeps in it!

Finally, to top everything else off, we enjoyed a visit from Paul's cousin Nate and his wife Courtney. We, of course, used this as an excuse to go to the Dogwood Tavern.



Glad to be writing of some good times!
-Jennifer

Wednesday's Clinic Visit

We had a fun-filled, six hour visit to the clinic today. Yes...six hours, and we still managed to have a good time. Something must be wrong with us, right?

173 Pieces

Last week Carson picked out a new toy for his clinic visit prize. And we're not talking just any ol' toy. He had a Lego Prisoner Transport Truck complete with a police truck and driver and a bad guy on a motorcycle. The Lego box remained closed until the clinic visit. Which meant Carson was pretty much beside himself all week long. He couldn't wait to go to the clinic!

Carson was so excited. He pulled off his shirt as soon as we walked into the room to get accessed. He wasn't scared. He didn't scream when they stuck him with the needle. He was simply focused on the Legos!

We weren't planning on ASSEMBLING the Lego truck at the clinic, but when it turned out that Carson needed an IgG transfusion (immuno gammaglobulin), that's exactly what we did. He loves it...although he is more than happy to leave the assembly process to someone else. (Ah, the joys of Legos!)

Picture Day

In addition to the toy fun, Flashes of Hope was at the clinic. After a quick trip home to get a shirt that didn't have a picture of a construction vehicle (what a blessing it is to live so close to where we receive treatment!), Carson and Jennifer were on set having their pictures taken. Carson was really hamming it up, so we are really looking forward to seeing how they turn out.

Hamming it up for the camera...even while getting a transfusion. (Yes, that's a striped shirt and plaid shorts...we're hoping the pictures are from the waste up!)

Counting Blessings

Have we mentioned recently how truly blessed we are to have such wonderful medical care? I was at another doctors office last week and came across the Washingtonian Magazine Best Doctors 2011 edition. There were four pediatric oncologists in this year's edition. Three of them are on Carson's team. And the fourth is a former physician at the same practice. And it's not just the doctors. The nurses and staff are all passionate about their work and care so deeply for the kids. We feel so fortunate!

-Paul

Trip/Clinic

Warning! Proceed with caution. This entry contains nothing too exciting or enlightening; however, at the request of certain readers, I write.....

Yes, we were away. We visited the areas in and around Harrisonburg, Virginia while Francesca was on Spring Break. During the visit we hit 3 colleges/universities, two caverns, a potato chip factory and a presidential birthplace. If you ask Carson what was the best thing was, he will tell you it was the pool at the hotel.

The last clinic visit was again extremely short and sweet. ANC too high, IGG level a bit low. Carson's congestion is returning. Increase the chemo medications a bit and add some allergy medicine in to the mix.

It has been a few weeks since Mr. C got antibiotics, so it is time to have "snot nose" reappear. April is almost over and we haven't been to the ER yet, so maybe the addition of some allergy medicine will alleviate the congestion and get us through the month. So far, no change in congestion level, but thankfully, no visit to the ER. Unfortunately, the month ain't over yet...

We go back to the clinic this Wednesday for chemo, antibiotic, a possible "topping off" of IGG and perhaps we'll try a new allergy medicine.

In other news:

• We went to the circus!!! Thanks again to Growing Hope.
• The tulips I planted last fall bloomed and I have the allergies to prove it.
• A good time was had by all Easter.

We will update you more later after tomorrow's clinic visit - and we'll include some pictures too!
Thanks for your continued prayers!!

-Jennifer