Hair Report Part 2

News Flash: Carson now actually has enough hair to cut! It wasn't much, but the boy needed a trim around the ears and neck. This is the most hair we've had to cut in over a year.

Carson was so excited to view the bits that were on the floor. He squealed "look at my hair - there's my hair". To us, it's just an indicator that life is getting somewhat back to normal around here. We are so thankful.

Paul does the honors with the clippers. I came in with the scissors later.

The hair model smiles for the camera.

Hair Report

Carson continues to do very well. He has tons of energy, which he uses to ask tons of questions about everything. Looking at him now, you can't tell that he is a cancer patient. We don't get any stares in public places any more due to his bald head and pale, thin appearance. Those days are gone for now. The only stares we get now are towards the weird mother who scrubs down everything he might touch with a sanitizing wipe and yells "Don't touch that! Too many germs"

Check out Carson's hair transformation below. They are in order, from a few days after diagnosis until present. The last picture was taken yesterday.

Hope everyone had a super holiday weekend!
-Jennifer

Champion

Well, my little Mr. may not be considered a champion right now in some circles.

He can't run as well as kids his age. The vincristine and months of other chemo have taken care of that for now.

His hair certainly doesn't set any records for growing in the fastest. Yes, we're still very bald.

He doesn't know many of his letters or numbers. Well, that one has nothing to do with leukemia and everything to do with the fact that if it doesn't involve a truck or car - he's not interested.

He's not "in" to sharing. Haven't had to do that for months and months.

He doesn't eat his vegetables, he doesn't eat his fruit. Heck, he may not even eat a meal-unless a chocolate bar counts.

He is a champion at taking his medicine though......

Bitter, yucky tasting, daily chemo of 6MP, weekly methotrexate, 5 day bursts of prednisone and weekend bouts of twice daily bactrim are no match for the following recipe, a glass of gingerale and The Master Medicine Taker.

crush the pill(s) , dilute with 3 ml water, add strawberry syrup to total 2 tsp

I get tired of mixing up the meds and I complain; but Carson takes them like a champ EVERY time with NO complaints. Two sips and two seconds...he is done and back to playing.

In our circle, he's a champion.

The Benefits of Bald

297 days since diagnosis. (It just feels like a lifetime.)

Being Bald

As you can probably imagine, Carson is the subject of a fair amount of stares. It's not that often you see a bald four year old. And I mean b-a-l-d, BALD. On those rare occasions, someone will come up to us and ask if Carson is sick...and that's what happened the other night while we were eating at Baja Fresh.

Just as a side note, if you know of our outings only through this blog, you are probably under the impression that we eat only at Baja Fresh. You might even think we own a franchise or are a major stock holder in the company. None of this is true. We do eat at other places - like Chipotle - but those occasions are very, very rare.

Anyway, while at Baja Fresh the other night a man approached Jennifer at the counter and said, "I couldn't help but notice you guys and your son. Is he sick?" (It was kind of hard not to notice. Carson was running around without a cap.)

Jennifer nodded and told him that yes, indeed, he was sick. The man then held out a hand with several folded up bills and replied, "I'd like to pay for your dinner."

Jennifer graciously declined and thanked the man profusely for his generosity, at which point he put his hand in hers and said, "Please take it. I've had a bad weekend, but it's not as bad as that." Then he left.

Of course, Francesca, Carson, and I were too busy inhaling chips and salsa to notice what was going on up at the counter.

What have you done today?

Moments like this continually serve as a reminder of the generosity of others. What are usually small, simple acts of kindness have a deep, profound effect on others. We've been on the receiving end of that generosity quite a lot recently. And my eyes still fill with tears each time.

To the generous man at Baja Fresh, a heartfelt thank you.

Paul.

Continue On

Day 284 and Still Fighting....

We went to the clinic today for a counts check and perhaps some explanation as to why Carson's hemoglobin dropped. What we got were his counts checked and no real explanation as to what happened with the hemoglobin.

What does that mean? It means we will begin again with same dosages of both his weekly and daily chemo and go again to the clinic in a week to see what is happening. It will also be time for our once a month IV push of vincristine and another burst of steroids.

As for the hemoglobin, the current thinking is that he is either sensitive to the oral chemo, or he perhaps got a small infection that caused the hemoglobin to drop. They will draw blood from his port next time and do more tests. If his hemoglobin drops again, and it turns out he didn't have an infection last time, the doctors will consider dropping his dosage. Dropping the dosage is not really something they'd like to do though. If he's getting less medicine, it is not ideal for keeping cancer away and gone for good.

So, for now, we will continue on and see what develops - next clinic visit on Thursday. As usual, the blood will dictate our next course of action.

In the meantime, we are keeping a photo record of Carson and his hair (or lack thereof...) and rejoicing that Carson is eating better, gaining weight and feeling great. He gained 1 pound this week and actually ate some fruit and vegetables! He now weighs 1 pound more than he did at diagnosis.

Here is the first installment of our photo record.....tune in this time next week for an updated photo.

Nothing much to see in regards to hair-just some peach fuzz and a happy boy!

-Jennifer

Being Number 2

Day 42 of 1,278

Despite being holed up in the house most of the day, Carson is doing really well. He is up and moving around...even going up and down the stairs (albeit gingerly). We even had visitors:

Carson contemplates whether Mark can be trusted to handle the US Postal truck appropriately. It's a tough call.

About the hair.

Some of you may have noticed that Carson's hair is drastically shorter. Just to set the record straight, it wasn't the chemo. I thought it would be a preemptive strike. You know, instead of waiting for Carson's hair to fall out, go ahead and take that Conair clipper kit out of storage, lube up the blades, and put it to use. Although his hair seemed to getting thinner and softer, he actually needed a hair cut. Thinking what hair he had could fall out at any moment, I thought a buzz cut would be a good idea. Sounds logical, right? So two weeks ago, that's what I did.

I knew this might not go over too well with the little guy. To sweeten the deal I promised him I would get a buzz cut, too. We'd make it a boy thing. I didn't mind...it's been hot and a buzz cut would feel great.

Except I made one teeny, tiny mistake. Instead of starting slowly and only cutting off a little bit of hair like a normal human would do, I decided to start with the super short number 1 attachment. Not good. He still has, or rather had, a good deal of hair. Unfortunately, after a swipe down the middle with the number 1 attachment, his head resembled a huge baby bird...covered merely in a thin coat of little fuzz. Wow...that is SHORT!

While waiting for chemo to arrive, the buzz cut gang slobber over pictures in the latest issue of Motor Trend magazine

As for my promise...well, I kinda chickened out. Instead of using the number 1 attachment like I did on Carson, I wussied out and used the number 2. It was a "number 2" move in so many ways! Nevertheless, we are enjoying our new "doos".

Get some new wiper blades and help JDRF.

Francesca and I ran a few errands this morning, including a swing by Advance Auto Parts for some new wiper blades. We noticed right away that the front of the store was covered in paper sneakers. Hmmm...those sneakers look interestingly similar to the JDRF "Walk To Cure Diabetes" sneaker.

Turns out Advance is in the midst of their Juvenile Diabetes Research Foundation (JDFR) fund raising campaign. In fact, they have raised more than 16.5 million dollars in the past 15 years. Impressive, huh? JDRF is an organization we have strongly supported ever since Francesca's diagnosis in 1999. Head down to your local store, get yourself some wipers, and make your contribution. It's for a great cause...and you'll be able to see out of your car better, too!

Paul.

The New Normal

Day 21 of 1,278

Carson continues to lounge around the house. His normally pleasant demeanor appears every now and then...but usually NOT when people visit. (Sorry folks!) He did perk up for a brief bit when his friend Andy came to visit today. But only briefly.

Carson's cheeks continue to grow by the day. You know how when kids take and hold a big breath of air and their cheeks puff out? That's Carson, except he looks like that all the time. (It's actually very cute.) He also still has his hair, although it might be a tad bit thinner. (We're not sure if it's thinner from the chemo, or if we're just looking at it more closely than ever before.)

Carson contemplates how he can pocket Andy's toy truck. But Andy is on to him!

We are all honing our skills as short order cooks. (Look out Hell's Kitchen!) We trip over each other, running at breakneck speed from one side of the kitchen to the other to satisfy the Czar's latest craving. But the cravings just keep on coming. Today, it went something like this:

• Grilled cheese sandwich (x2)
• Peanut butter and jelly sandwich
• Pancakes (morning and evening)
• Hot dog (x2..or was it 3?)
• Chicken nuggets and fries (McD's)
• Fruit snacks (x3)
• Chocolate (after morning and evening meds)
• Bread - just plain

Now, I have to say...he didn't eat it ALL. He mostly would take a few bites, then say he's done and send it back to the kitchen. Thirty minutes later, of course, he'd ask for it again. If nothing else, we have lots and lots of food in the house. We never know what he's going to think of next.

Of course, with all this food in the house, it's not easy for the rest of us...especially me, the human garbage can. There's always something cooking...some sweet smelling aroma floating through the air. It's tough resisting the urge to eat your way through the day!

Carson is still tired, but was at least more talkative today...which is a good sign he's feeling a little better. He went on a ride in the car (to the drive thru at McDs), and he talked the entire time.
If we could get the rest of the body feeling as good as the jaw muscle, I think he'd be in really good shape!

This evening Carson wanted to go for a ride in the stroller down to the bike trail. This wasn't just to go to the bike trail, but rather to see the fire station which is down right next to the bike trail. Our timing couldn't have been better. As soon as we got there the firemen pulled one of the fire trucks around back to wash it. And then they tested the chain saws! And then one of the ambulances got a call! Carson was absolutely beside himself.

Is there better entertainment for a 3 year-old boy?? Thankfully they didn't know we would have PAID to watch this!

For Jennifer and I, we are trying to get our lives back to "normal". Some things have not changed. For instance, we went on a six-mile run this morning. We are still slow. I went out to Fountainhead to ride the mountain bike trails earlier in the week. Yeah, I still stink. We gave the dogs a bath. And we still wonder, "Where the heck does all that hair come from?"

It's not the same as the normal before leukemia, but at least some things haven't changed. :-)

Monday is round four of chemo. Go Carson!!

Paul