Office visit 5/31 Post-Op Chemo Round Three begins

After a long weekend, we started Round Three of post-op chemo today. It was rather hectic since our noon appointment was rescheduled earlier into the morning because Doc P was going to out of the building (they can't administer the chemo without him present). The problem was we already had the ARD scheduled to set up Alan in special ed preschool in August - the teachers and administrators appointments are packed at the end of the year and there was no way to reschedule.

So, we picked up Auntie Karen on the way to the Medical Center and got Alan set up for the day. Karen stayed with Alan while Judy rushed back home to attend the meeting at the school, then rushed back to the Medical Center to pick them up. Phew!

The blood return took a little while to come, and Alan took advantage of Auntie Karen to act up. He got angry when they had to pull the room partition and started banging on the wall. He kept Auntie Karen busy making letters and numbers. What a monkey!

Post Spica Cast Eleven Weeks

It's been a great PT week! Alan spent two hours playing on the McDonalds playground, doing lots of climbing and sliding. He's definitely standing more, even working on walking with Mr. Marc. We really want Alan walking by the time school starts at the end of the summer and he begins attending PPCD. If he can't get on the bus by himself, they will need to send a wheel chair bus, and Kevin will have to switch buses along with him. Kevin will already be making a lot of changes next year so we'd really like to keep him with the same driver and aid he's had for the last three years.

Alan is really beginning to warm to Mr. Marc. He was very eager to try walking with him this week. One of the things we've been worried about is that Alan wouldn't want to work hard on walking since he was getting around so well, so this was an awesome development! Even better, Alan did not want to leave Mr. Marc alone after his session. He kept on trying to sit Mr. Marc's lap - we ended up taking him upstairs to play so they could continue Kevin's session in peace. A good relationship with his PT will go a long way in Alan's recovery.

Office visit 5/20

05/20 10:25
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A quick visit for counts, which Doc P was very pleased with. Alan gave him a big show with his knowledge of numbers. We get all of next week off, yay! We will return to the office on Tuesday, after the holiday weekend, to start the next round of chemo.

Post Spica Cast Ten Weeks

This past weekend was the Relay For Life - Alan's third. It was the start to a busy weekend, followed by a birthday party at Morgan's Wonderland and launching rockets on Sunday. So much fun! Alan has been getting used to the AFO and has been trying to stand more and more without any support. He's still putting most of his weight on the good leg, balancing on one foot, but he's working on it! There was no PT this week since Mr. Marc had a conference, but the boys have been spending a lot of time in the water.


"Catching candy" at Morgan's Wonderland


Things were too crazy at Relay to take pictures, but here's one of the Relay rockets in action later in the weekend

Office visit 5/16

05/16 10:31
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Alan's port was a little sluggish today, requiring a couple extra syringes of saline to get the blood return. Alan's counts are good - Doc P is very pleased. He was also happy to hear Alan had a good weekend - no nausea or other symptoms. Our boy is quite the trooper!

Doc P got the usual "Bye Bye!" when he came in the exam room today, but Alan gave him a "Good job!" when he pushed the hep-lock and removed the needle. We'll be back for counts again on Friday.

Relay For Life 2011

This is our third year participating in the Relay For Life. The American Cancer Society has been a big support for us these last two years, so we were happy to take part with our team, Friends For Life, once more.

Since Alan was not the honored survivor this year, we did not expect to take part in the opening ceremonies other than participating in the Survivor's Lap. So we were surprised when Alan was called up to cut the ribbon to open the Relay.

Alan did the Survivor's Lap with Harold, the Caregiver's Lap with Judy, and the Team Spirit Lap with Miss Cookie, our Team Captain. Then he did a few "personal training" laps with Miss Chrissy (who also did some upper body workouts lifting Alan up in the air with each "3-2-1 blast off!") and Miss Becky. Judy managed 20 laps and a Zumba session, while Harold launched almost 40 rockets he made for the team fund raiser. Another successful year at the Relay For Life!


Alan cuts the ribbon


Harold takes Alan on the Survivor's Lap


Judy and Alan with fellow survivor Mr. Bill


Alan tries on the team fundraiser flashing glasses with Miss Chrissy


Team Friends For Life - what an awesome group!


Alan and Miss Becky getting ready for a couple of laps


Late night Peek-A-Boo!


The family that Relays together...

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Post Spica Cast Nine Weeks

A big PT week for Alan! We picked up his new custom fitted AFO on Wednesday. The leopard print we had ordered was no longer available so we had Tweety Bird on the back of his calf instead. We had a heck of a time finding a shoe that would fit over the AFO but fit on his other foot without looking like a clown shoe! None of Kevin's hand-me-downs worked and the only shoe that fit is a discontinued Robeez Tredz. I'll probably have to check out eBay. Lorenzo doesn't think the AFO alone is enough to give Alan enough support to walk, so he and our PT Marc will contact Doc L about authorizing a custom brace that will stabilize his hip.

The hot tub is now up and running and the boys had their first aquatic PT session at home. Alan was pretty cranky for Mr. Marc, but once they went into the water, he was completely cooperative. Ahhh, the magical quality of warm water!

We went to the neighbourhood field this weekend to test the rockets we will be shooting off at the Relay For Life tomorrow as one of our team's fund raisers. Alan loves counting down to the blast off, and the rockets looked great. They should be a big hit at the Relay!


"3-2-1 blast off!"


Rockets for Relay!

Office visit 5/11

05/11 11:00
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Great counts today, so we don't have to come back to the office until Monday! Between scratches on his face from rubbing his runny irritated nose and the healing blister on his surgical incision, Alan looks a little rough. Doc P prescribed an ointment for his skin and told us to go ahead to give him some Benedryl to dry up the nose and ease the itching. Hopefully without him scratching and rubbing at it his skin will have a chance to heal. We also got a note extending Kevin's exemption from live vaccinations for school. This will cover Kevin for another year.

Office visit 5/6

05/06 08:56
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The last day of round two! Alan kept busy drawing on his magnetic board and watching Mickey Mouse Playhouse. It's fun for him since he hears the theme song all the time on his There Might Be Giants CD.

When he was done he pushed the Silence button on the IV pump himself. Harold thought he had seen him do it yesterday, but he wasn't sure if he was just randomly jabbing at it or if he had figured out the buttons over the week. Sure enough, when the alarm went off at the end of the infusion today, he went straight for the button to turn off the noise.

With the end of the week, we removed the needle from the port and the dressings. We had a panicked moment last night when we saw a stain on the dressing. Our first reaction was that the needle had come out, but the stain was in the wrong area. Instead, it was a blister from his surgical scar that had popped from the rubbing of the dressing and the vest he wears when he's accessed. There's a blister at the end of the scar since a suture is working it's way out - nothing to worry about, but annoying for Alan.

We'll come back to the office on Wednesday for counts. After spending all week here, it's nice to have some extra time off!

Office visit 5/5 Post Spica Cast Week Eight Weeks

05/05 09:25
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Alan had a quiet day - other than a few hiccups with the IV pump the day's infusion of Irinotecan went smoothly and the blood return came without any problem. He was happy to spend the morning playing with the tubing. Doc P mentioned that there is a chance that Alan will not lose his hair this time - that would be nice since he looks so cute with his head full of hair!

It was a busy weekend leading up to chemo, with a trip to Morgan's Wonderland for Kevin's field trip and Relay For Live events. Our team held it's 6th annual fund raiser while Harold worked on model rockets we will be launching the night of the Relay. The next morning, we went to the crawfish boil for another team's fund raiser and the boys had a great time on the playground. Even Alan had a great time climbing all over the jungle gym with a little help getting over the mulch.

This week's PT session was full of drama. Alan worked hard but was not at all happy to see Marc, especially after seeing him the day before for the AFO fitting. The fitting went more easily than we expected. Though he cried while the fiber glass mold was put on and cut off, he was not fighting us as hard as we had feared. The AFO should be ready next week, and we will go in with some shoes so Lorenzo can put a lift on one foot to help even his gait.

Now we just have to get him to bear weight on that leg. Marc said that Alan's tantrums are pretty typical of kids who have had a lot of medical attention and hospitalizations. They are just tired of being messed with. We'll just need to keep going until Alan's gains enough strength for the sessions to be fun. A new hot tub was delivered and installed this week. It should be ready for next week's PT session for some aquatic therapy - Alan loves being in the water, so hopefully he'll be more cooperative for at least part of the sessions.


Catching "candy" at Morgan's Wonderland


On the jungle gym at Clear Springs

Office visit 5/4

05/04 09:03
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Alan was content to eat puffs and draw today while receiving the Irinotecan. This was the first time this week we didn't need to break out the PSP for his videos. The blood return was slow today - we had to do the arm lifts and lie him down to get the flow going. But, we're over half way through now!

Office visit 5/3

05/03 09:35
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On the second day of chemo, Alan wrote the ABCs and 123s over and over and over again. The nurses commented on how chatty he was today. Blood return was sluggish, but we were able to get the sample without having to work too hard. We were room mates with Pierce, a hematology patient, again. Since his treatments are once a month, we will probably be seeing him and his mom regularly for the rest of Alan's treatment. The Irinotecan took an hour and a half and we were off to his AFO fitting after Alan selected a lollipop!

Office visit 5/2 Post-Op Chemo Round Two begins

05/02 09:00
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We are back after a week off to start the second round of post-op chemotherapy. Alan's blood return was slow in showing (requiring some arm-lifting, lying down and other position changes), but not too bad after almost 10 days off. He started with a push of Vincristine and then an hour and a half of Irinotecan.

He was happy drawing and playing with the interactive ABC on the iTouch most of the morning. In fact, he was having so much fun with the ABC app he sent some feedback to the company while Harold wasn't paying attention. We only found out when Judy checked her sent mail folder and saw the "message".