Office visit 10/31

10/31 11:55
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Alan had fun going Trick or Treat around Doc P's office after his vitals. While we waited in the exam room Alan went through his treat bucket and decided he wanted to get into the Fun Dip. There was amazingly little mess other than Alan ending up with a bright green mouth!

Doc P was happy with his blood tests so we're off for the rest of the week. He was a little concerned that Alan still had the occasional chesty cough, but he is breathing well and it hasn't slowed him down. Even though he hasn't seen the results from the MRI last week, Doc P has decided that Alan will go through another four rounds of chemo. After a full 12 months of post-op chemo, we'll look at the issue again.



Trick or Treat in Billing!


Down the hall for more goodies


More treats in the lab


Fun Dip green lips!


Mmmmm, yummy!


Doc P checks Alan out and watches as he plays Toca Doctor

Surgical follow up with Doc L

First things first, the scans are clear and Alan is great!

While we were going around the hospital for the scans, we got a call from Jo at UT Television. Doc L has commissioned a documentary on hemipelvectomies and Alan was one of the four patients chosen to be featured. There was a bit of a scramble when they realized that Alan was coming in today and wouldn't be back for another three months. Unless they delayed finishing the production they had to speak to us and film Alan today.

They met us at the Sarcoma Center waiting room to talk about Alan's case and let us know how the afternoon would progress. They started with an interview with Judy once an exam room opened up. It turns out that Jo is also doing a piece on The Rotary House, so she had Judy do a segment on our stay there as well.

They reset the exam room for our consultation with Doc L's PA Kristi, then got footage of Alan waiting with us in the exam room and our visit with Kristi. We got to see a copy of the scans, clean! and read the report. No evidence of tumor recurrence and nothing unusual. Kristi did a physical examination and was happy with his range of motion.

While we were waiting to see Doc L, the documentary team took footage of Alan walking up and down the hall. Doc L eventually came in with one of her fellows, then Kristi and and the nurse squeezed into the already crowded room. Alan said "One more!"

Doc L and Kristi had a chance to watch Alan walk while Judy was being interviewed, but now they watched him walk with the brace off. Doc L checked how his bad leg bent and kicked and we mentioned that we had seen very little movement of his foot or knee. Although the leg brace is articulated, Doc L wants Lorenzo to remove hip brace from AFO, so Alan will be forced to use his leg more and start bending his knee. Alan will only have the AFO on his foot. She will also talk with Mr. Marc about concentrating the PT on bending his knee (by getting the tibialis anterior muscle to fire).

We had mentioned our concerns about Alan walking without the support of the brace, especially since Lorenzo had mentioned the theoretical possibility of tearing his femoral artery if the femur shifted and knicked it. Doc L told us that Alan still has his femoral head, so there is no surface that would pose a danger. There is little chance of injury to the femoral artery, at least no more than any other child his age. Since Alan has been walking without the brace (usually during lazy mornings that the family spends in PJs), she wants him to walk with just the AFO in order to encourage those leg muscles to further develop.

A successful visit! We will be back in January for the next set of scans and exam with Doc L.


Finally beginning to perk up, Alan drinks some milk.


Alan's scan - no tumor!


Alan and Kristi make some finger letters.


Watching Sponge Bob while we wait for Doc L.


On the way home with a snack.

Scans at MD Anderson

It was time for Alan's quarterly scans at MD Anderson today. We headed out to Houston the night before for an overnight stay at the Rotary House so we could be at the hospital bright and early for the scans.

The X-Rays went smoothly, but there was some frustration going back and forth on where we had to go to access Alan's port. To compound matters, we weren't getting any blood return, so after being accessed at Infusion Therapy and having TPA administered, we had to sit around with the TPA for an hour while playing at Children's Clinic. After an hour, we headed back to Infusion Therapy to have the port flushed (the TPA did the job, yay!) and then *back* to the Children's Clinic to have the blood drawn. If that sounds annoying, then imagine actually running around like that.

Needless to say our MRI was delayed, but we eventually made it. Alan is a big boy now, so he waited sitting in the big chair. The MRI went smoothly and we were back with Alan in an hour. Alan slept off the Propyphol for another hour and then woke up for some apple juice.

After he recovered, we went to ICU to take cookies to the staff and visit everyone who had taken such good care of Alan last December. Two of the nurses who had watched Alan were there and loved seeing how much he had grown and his full head of hair. Alan was still so woozy from the anesthesia, so he was playing with Toca Doctor while they were ooh'ing and ahh'ing over him. He stretched out and put his hands behind his head, which had everyone smiling. They all remembered his file picture and how he used to do that all the time!

While we were waiting, we got some good news from one of Alan's fellow warriors. Tristan, our little friend from South Africa, had scans the day before Alan. The tumors in his brain have showed no growth, and in fact have shrunk a little. Considering Tristan's parents were told this time last year that he was a terminal case, this is more than wonderful news, it's a miracle!

Now it's off to see Doc L for our surgical follow up.


Alan drawing while waiting for the MRI


Big boy chair!


Off with Daddy to the MRI!


Post MRI with a penguin mask.


Mmmmm, juice!


Visiting ICU

Office visit 10/24

10/24 11:30
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Today Alan went up to Doc P's office using his walker for the first time. Since he uses the walker at PPCD so well and he was walking around the office the last week (we'd been leaving the wheelchair in the hallway), today was a good day to see if he would walk from the car to the office. He did great once Mommy got all the wheels set up properly and he loved being independent. He walked right up to the scale with his walker and was pleased to do it himself! He loved walking up to the wall to have his height measured as the ruler slid down and then got into the chair and offered his arm for the BP cuff and then the thermometer. Vitals are becoming a fun game now. Which is good, because as the nurses observed, now he can get away from us even faster!

We saw the nurse practitioner Patsy today. His counts are good so we won't need to come back until next Monday. They will take another blood test on Wednesday at MD Anderson so he will continue to be monitored as well. She checked the rash on Alan's chest from the irritation from the bandage he wore all last week during chemo. It looked like it was healing quickly but she recommended some mupirocin ointment if it looked like it was getting worse.

Alan has been fighting off some sniffles and a cough, but since he has had no fever, we went ahead with his flu shot. It's better that he's covered before we head off to MD Anderson and now the whole family is taken care of.

Boo Bash 2011

Today was time for the American Cancer Society's Halloween party for children with cancer again, now called the Boo Bash! Kevin was dressed at a FedEx delivery man, complete with a FedEx package for collecting his treats. We were thinking of dressing Alan up as the FedEx package, but Alan insists on only wearing shirts with numbers on them right now, preferably a soccer jersey. Luckily, we just got a couple of new jerseys from Auntie Cookie and Kevin's old playgroup buddy John Robert, one of which was orange. What a perfect colour for Halloween!

We didn't see our old friend Panda this year, but Po from Kung Fu Panda fame was there and got high fives from both boys. There was the usual contingent from Star Wars, and new this year was the "Y" from the YMCA and the great big caterpillar from Half Price Books. Kevin was fascinated by "Y" dancing up and down and Alan loved checking out all the letters on the HPB caterpillar. The glowing bracelets were a big hit again this year. Alan would sometimes pause to look at them on his arms.

The boys had fun playing all the games. Alan especially enjoyed the kicking the soccer ball... finally he got to drive to the goal! We got to see a lot of old friends from the ACS and from the HEM/ONC ward at Methodist Children's. They were looking forward to seeing Alan again, though the nurses from Methodist were glad we haven't had to come by for the last year. We were sad that we didn't see Alan's buddy Nicholas. We were hoping that he'd be up to attending.

After lots of fun and lots of snacks, Kevin won a prize for his costume! We had a feeling he was in the running, since so many judges (and volunteers and fellow party-goers) had enthused how cute he looked, especially when he opened up the FedEx package to put in more treats!


Kevin with his prize-winning costume and prize!

Office visit 10/21 Is this it?

10/21 11:30
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Another day with great counts for the last day of round 8, especially since Alan has been fighting off sniffles and a cough. Alan was not hungry today, turning every thing from his Happy Meal away except the apple juice. He played with some new games on his Touch as well as a few old favourites.

Doc P came by to check in on Alan and we talked about his treatment. We had gone into post-op chemo thinking we would be doing it for eight months. However, the normal treatment is 12 to 18 months, and Doc P has been pondering Alan's particular case - toxicity levels, neutropenia, the behaviour of his tumor. He would usually take into account previous chemotherapy treatments but Alan's tumor has broken through those. Because Alan has been handling these rounds of chemo so well, he is inclined to extend Alan's chemotherapy at least another four months. He will make the decision within the next two weeks.

Bottom line, we are probably not be done yet.


Mmmm, juice!

Office visit 10/20

10/20 11:22
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On the downward slope of this round of chemo and Alan is as feisty as ever. As was very apparent this morning when he did NOT want to wear his fuzzy. Even though he is fighting off the sniffles and it was chilly this morning.

He was not happy... and the jacket was packed away by the time he was picked up from school to go to today's chemo treatment.

At the clinic, he was his normal active self... except he wanted to eat a variety of foods today. Yogurt bites, puffs, and dried apples were all on the menu. And his face, hair, clothes and couch. He even was licking the dust off his fingers... then cleaning what was left on his hands, using his head.

Dad became a cleaning technician today...

Office visit 10/19

10/19 11:32
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Day 3 of this round of treatment. Another uneventful day, watching "Dora the Explorer" and "Max and Ruby". Alan pretty much knows the routine now... though we think about 2 hours sitting is the max he can tolerate before wanting to walk. Which is good...because the normal infusion rate ends up taking about an hour and a half.

But he worked hard later on during his physical therapy at home... trying to ride his tricycle and walking around almost the whole housing circle! A perfect day to be outside to do so... dry, cool, with a slight breeze. Here comes fall!

Office visit 10/18

10/18 11:27
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The day at the clinic was about the same as yesterday, except his counts were much higher. We suspect that is from the initial reaction to this round of chemo.

After his chemo treatment, he took about 100 milliliters of flush (saline) to help clean the line and give him liquids. They've done this before, just not quite that amount. They said it's not unusual...liquids help buffer the side effects of the chemo. The only downside (besides time) is he has to get rid of it later...which means more diapers.

He did quite well today overall...and ate a whole bag of cookies to boot. Guess he's feeling better!

Office visit 10/17 Post-Op Chemo Round Eight begins and Preparing to Pay it Forward

10/17 11:29
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We started what we hope to be Alan's last round of chemo today. Our regular couch wasn't available, so we had the corner bed in the Mushroom Room instead. Alan's blood return was fine which was a nice way to start the week. The first day proceeded quite smoothly with the biggest problem being the crumbs from the bag of cheddar Sun Chips Alan was snacking on. Patsy, the nurse practitioner, came by to see Alan as we finished up. Alan has been fighting off a bad diaper rash for the last week and we wanted it to be checked out since it can be a potential source of infection. Patty agreed and prescribed a special cream for us to use on it to knock it back. Between recovering from the rash and a few sniffles, we will hold off on Alan's flu shot until the end of the week.

Once we got Alan settled, Harold stayed with him while I went to check out the Ronald McDonald House in the Medical Center. Last year, we stayed at the Ronald McDonald House in Houston for six weeks during Alan's surgery and recovery at MD Anderson. So many people and organizations had brought dinner and entertainment to the RMH while we were there - a welcome respite and distraction from all the stress we were going through. Alan's 4th birthday is coming up and it's the perfect occasion to pay it forward to the Ronald McDonald House here in our own town. With the help of the Hardy Oak MOMS Club and some of "Alan's Angels", we will be bringing pizza, cake and ice cream as well as goody bags, a balloon artist and face painter to the families staying at the RMH for treatment at the South Texas Medical Center.

Alan was pretty tired when we got home and spent the rest of the afternoon napping and quietly playing. He perked up by bed time and fell asleep quickly.


Mmmm, cheddar sun chips!

Office visit 10/10

10/10 11:50
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After all the drama getting Alan's blood return last week, it came effortlessly today. Doc P was happy with the counts - even the red counts have bounced back nicely. He was also amazed to hear that Alan had broken his brace a third time. Alan has shown himself to be a tough little man! For now, we're off for the rest of the week. We'll be back next Monday for the final round of chemo.

Another unexepcted trip to Lorenzo

When we picked up Alan from preschool today, he was walking a little funny. It turned out that he had broken the brace *again*! Alan had broken one of the other solid bars that connect from the knee to hip. Luckily, Lorenzo was available that afternoon so we went straight to his office for yet another repair. Alan is so active, Lorenzo is using thicker bars to keep up with him. We'll see how long this lasts! For those of you keeping score, this is the third repair to the brace.

Office visit 10/3

10/3 13:10
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We went in for counts today...however, as we sort of expected, his port wouldn't give any blood return. So he had to get a dose of TPA and let it sit for an hour before the port would be retried.

So, in the mean time, it was time for ice cream! We went down to the hospital's food court, where Alan had half a cup of McDonald's ice cream.

Then back up for a good blood return and good counts. Plus we got the results of the ultrasound Alan had on Friday. He continues to be clear, and the doctor is very pleased. He doesn't have to see us again until next week.