Office visit 12/14 and the return of the Borg...

12/14 11:56
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A busy day today after a less tense night. Though he was still restless, and occasionally squawked his discomfort, it was definitely less than the last couple of nights. And there has been no return of Monday's nausea. But off early this morning!

It started with Alan going to the hospital for a chest x-ray and an abdominal ultrasound. The x-ray didn't take long, but the abdominal ultrasound took a LONG time, and it wasn't helped that Alan couldn't have anything to drink or eat before it was halfway done. He was NOT happy for a while... but near the end, he actually started nodding off once he had gotten something to drink and was soothed by the noise of the ultrasound machine.

Then we went over to Doc P's clinic for day 3 of chemo, which went pretty well, and in fact, Alan fell asleep during the last half. Daddy almost didn't want to bother him after he was done.

We told Doc P about Doc L at MD Anderson wanting the MRI so we could cancel the one we had scheduled for the 22nd at the Children's Hospital. We also talked with him about the ultrasound, with the tech commenting that the right kidney might look a little full... but we don't know if that's relative to a normal kidney or relative to Alan's previous scans. Regardless, Doc P didn't say anything about the scans, which leads us to believe that they still don't show anything abnormal.

We think what happened on Monday with Alan vomiting was that he was so tired and beaten down from the pain over the weekend, that his system wasn't ready for the jolt of chemo he got on Monday. Since then, he's not shown a hint of being nauseated, and in fact, later on today his appetite (and bowel movement) was quite good. He asked for a "Donut!" on the way home.

After the clinic, it was off to Lorenzo to rebuild the brace and fit the new AFO. While we waited for Lorenzo to finish building, Alan and Daddy made goofy faces at each other and played... it was the happiest we've seen Alan in several days. Alan was fitted with the brace and new AFO, and initially wasn't happy about not being able to eat his foot! Talking with Lorenzo, he certainly sees how removing the brace can cause a misalignment, and reaffirmed his belief that removing it wasn't a good idea (he voiced his misgivings when it was first proposed back about a month ago).

After the long day, it was time to go home. Alan has started getting used to his brace again, already attempting to stand and walk with it. Of course, it's going to take several days before he re-acclimates to it, but hopefully, it will go a long way to easing his discomfort, or maybe solving the problem completely. His mood has already improved, playing 'giddyup' and 'fortress' with Daddy, getting into trouble pulling out a bunch of DVDs while looking for his new favourite Donald in Mathmagic Land, and playing with his brother.

On the backside of the chemo treatment for this round... looking forward to Thursday.

Office visit 12/13

12/13 11:29
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After a restless night for both Alan and ourselves, Mommy and Daddy decided to visit together to get the full brief from Doc P. Also, Alan woke up very thirsty (no surprise) and guzzled down almost a full bottle. We of course kept complete tabs on him to be ready for a surprise in case he continued to have problems with nausea.

We spoke to Doc P about how it seemed though he had a better night than the last couple, he was still fairly restless. He then informed us about how Gabapentin requires a few doses to build up an effective level in Alan's system to take the edge off.

While Alan got his dose of chemo today, due to our concern to track down the definitive source of Alan's discomfort resulted in scheduling an MRI for the 22nd of December after Doc P's scheduler jumped through hoops to get us a slot for that day. We also are still on track for Alan's chest x-rays and abdominal ultrasound on Wednesday.

After more discussion with Doc P, assuming it is a pinched nerve, the feeling is that the removal of the larger leg brace has resulted in some unexpected movement of the area around the nerve, allowing the leg to get out of alignment, and causing the pinched nerve. Doc A and P are in agreement that the hip brace should be attached back to the AFO. Lorenzo had the new AFO ready (we were just waiting on the prescription from Doc L) so Doc P wrote a script for the adjustment.

The chemo went fine, and Alan did not have any problems with vomiting. His appetite has also started coming back.

After getting home, we contacted Kristi, Doc L's PA, letting her know about what was going on. A few minutes later, we were called back, saying that Doc L would see us on the 21st of December, and that we would have an MRI that morning at MD Anderson. Good deal! We have to travel out of town, but at least both Mommy and Daddy will be available and that Doc L can take a direct look, with the MRI results in hand from that morning.

Office visit 12/2 and check up with Lorenzo

12/02 11:40
ANC 2257

Counts today and the blood return came easily. Yay! Doc P checked Alan's ears again and felt his abdomen - we had been a little worried since he had been getting up cranky and crying in the middle of the night this week. The counts were good so Doc P won't need to see us again next Friday. However, we'll see him tomorrow at the Kory Kubecka Santa Run party!

Then we were off to see Lorenzo for another check up. The back of the AFO has been pressing into his calf - Alan has been growing and as Lorenzo thought, it's time for a new one. Doc L will have to write a new prescription but Lorenzo made a cast of his leg so he can get working on it when it comes in. This time Alan chose trucks to decorate his new AFO.

Lorenzo takes off the training wheels

We went for our checkup with Lorenzo today. Due to a voice mail that wasn't passed on, he hadn't heard that Doc L wanted to remove the hip and knee portion of the brace. Luckily Kristi was available by phone to go over the matter with him. Though he and Mr. Marc have their reservations, he took Alan's brace down to just the AFO. When he examined Alan, he remarked on how much he's grown. We will need to replace the AFO pretty soon since Alan is getting taller.

After watching Alan walk with just the AFO, Lorenzo sent us home. We'll be back in a month to check the fit of the AFO.

In the mean time, we got the following photo of the fabulous goody buckets for the Ronald McDonald House party from Jess - Sunday will be a great time!

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.

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.

A check up with Lorenzo

We stopped by Lorenzo's office today just for a quick follow up check on Alan and his brace. He was quite pleased with Alan's progress and did a slight adjustment to keep his leg straight when walking. He wants to see Alan again in a month. We'll see if we can make a whole month without Alan breaking another part of his brace!

Repairing the brace

We had to make an unexpected trip to Lorenzo today. Yesterday, when Alan came home from preschool, we noticed that one of the metal bars from the AFO to the thigh cuff had broken. He broke a solid metal bar at the rivet point! So, we had to make an unscheduled trip to see Lorenzo so he could repair the brace. Luckily it was just a matter of replacing the bar, which he did with a heavier bar this time. We were worried, but Lorenzo thought it was great that Alan was so active.

Another trip to Lorenzo

Today we went to see our orthotist, Lorenzo. Alan walked from the car in his walker, with a promise to see the fish in Lorenzo's waiting room. Well, once he was inside with the fish, he didn't want to go back to the room so Lorenzo could check him out, so Lorenzo came out to watch Alan walk. He was very happy with Alan's movement.

We noted some toe-dragging on his bad leg, which had started a couple of days ago. Lorenzo gave us some lifts to put in the shoe of his good foot to keep things evened out a bit and they seemed to help right away. He thinks that Alan is poised for a growth spurt, so we will be coming back in 3 weeks to re-assess the fit of the brace.

Orthotist follow up

Lorenzo, the orthotist who made Alan's brace, wanted to see him after he's had the walker for two weeks to be sure everything was aligned correctly for Alan to walk. After our incident a few weeks ago, we also took the opportunity for Lorenzo to give the brace a once-over - on July 21st, Alan's brace actually broke! He had been been playing, climbing, walking and on the move so much that the copper rivets on the thigh cuff came out. Lorenzo had originally put in copper rivets so the brace would be easy to adjust. After all, Alan is growing and the brace is made to be able to grow with him. Given Alan's activity level, Lorenzo replaced them with steel rivets this time. Luckily, broken rivets are easy to replace, unlike the specialized screws in the joints of the brace. Those had been coming loose too, so Lorenzo secured them with some Loctite.

After watching Alan walk, Lorenzo went over the general condition of the brace and how it fit his body. He was very pleased to note that Alan's bad leg is stretching out to match his good leg. The brace is doing it's job quite well! He thinks we'll need to adjust the length in the next month or two (probably by adjusting the bar attached to the AFO), so we'll be back in September for another once-over and re-assessment.


Alan checks out the fish in Lorenzo's waiting room

Post Spica Cast Fifteen Weeks

This week was Alan's two week follow-up with Lorenzo for the brace. Lorenzo liked how Alan was using his leg to walk, even if he wasn't putting any weight on it. Since Alan is moving his leg, Lorenzo will not lock any of the joints. We will come back again after Alan has had the gait trainer for two weeks to see how that has improved his walking stance.


Counting down the rocket launches... "3, 2, 1, blastoff!"

Post Spica Cast Thirteen Weeks

We finished off Week Three of post-op chemo and enjoyed the next morning launching rockets. On Tuesday, we went back to Lorenzo to check the fit of Alan's new hip brace. Lorenzo does a great job as it fit perfectly, so he attached it to the AFO so Alan now has hip-to-toe support. Another bonus of the new brace arrangement is that it keeps Alan's leg from falling into a turned out position. We have been propping it in place with a rolled up towel while he is seated in the car seat or stroller so the muscle will not stiffen in the shortened position, but having it held in place by the brace is ideal as he has the foot in the right position for walking too. The brace also holds his leg long enough so a lift in his right shoe is not needed.

After riveting the AFO to the rest of the brace, we put it on Alan and took it for a test run up and down the hall. We held Alan by the hands while we encouraged him to walk. He figured out pretty quickly that the brace gave him some support, but he is still trying to figure out what to do with it. Lorenzo did not lock the hip and knee joints so they can still bend with his leg and hip. Keeping them locked would have made things easier in the short run since it would give Alan a stiff leg to walk on, but would be a disadvantage in the long run. It will take Alan longer to re-learn how to walk while figuring out how to move his leg, but it will be a more natural gait, and moving his leg means the muscles will fire - all the better for his recovery.

Mr. Marc checked the fit during Alan's PT session the next day and watched him walk in it using one of the boys' chairs as a makeshift walker. He was very happy with how Alan was moving and was ready to order a walker to encourage him. We will be getting a Mini Pacer gait trainer in lime green - hopefully within the next couple of weeks. Once it arrives, Mr. Marc suggests we take Alan to a mall in the mornings to walk up and down the halls.

Auntie Karen, having watched Alan make letters over and over again with tongue depressers last week, brought him a big bag of popsicle sticks. Alan tore right into the bag and started making up the whole alphabet all at once! He was able to get up to "R" before he ran out.

Alan's appetite has decreased somewhat - not surprising since he has finished up a round of chemo. While his intake of his favourite chocolate nutritional drink has gone down somewhat, he has been eating more and more real food. He continues to enjoy cheese sticks and last night, seeing Kevin eat broccoli, Alan asked for "flowers" and proceeded to eat several tablespoons of the broccoli florets. Add that to fries, hamburger buns, ice cream and yoghurt and pretty soon we're talking about some real food. He wants to eat and is definitely curious about food. A sensitive gag reflex seems to be holding him back. We're not sure whether it's a physical problem that we'll need an OT or SLP to help us with, or if it's a residual effect of nausea brought on by chemo. It's not a well-rounded diet yet, but we're getting there!



Watching Daddy launch model rockets


So many letters to make!


"A" through "R"! We need more popsicle sticks!

Post Spica Cast Twelve Weeks

This weekend we celebrated big brother Kevin's birthday, including a party at The Little Gym where Alan really got to cut loose. He spent over an hour on the go climbing, crawling, and generally romping. One of the boys' favourite activities is "Smack the Cheese" - take a running start at a large foam ramp set up on end and topple! Today, Alan wanted to use his head! We also spent a day at the park where Alan got to climb and slide and fly a kite. With all the activity over the weekend, he was hungry and ate three and half cheese sticks in one day. That cheese stick to body weight ratio would mean almost 20 cheese sticks for Mom!

With the weekend over, we started week three of post-op chemo. After the first day, we headed to Lorenzo where Alan could be measured for a hip brace. Lorenzo will make up the custom hip and leg bands so they fit Alan's little body, and then attach them to the AFO with metal rods with a joint at the knee to provide him support from his hip through the knee to his foot. It should also stretch the leg so he won't require a lift in his right shoe. Alan has been standing without any support or help to balance, and Mr. Marc worked on more walking this week. Hopefully it will go even better when we have the hip brace.


It's a Wiggles kind of day! Alan's new favourite thing is a little Wiggles books on shapes!


Playing with hula hoops at The Little Gym


Alan "Smacks the Cheese"!


Sliding at the park


Alan feeds Kevin some blueberries

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 5/5 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

Post Spica Cast Seven Weeks

Another week of recovery and the third week of PT. Alan recognizes Mr. Marc now and was not at all happy to see him. Trying to get him to stand and bear weight on his bad leg takes a lot of muscle - Alan is one strong little boy! So Marc and Harold are the ones who usually work on helping/making him stand - Judy is too wimpy and works on stretching his foot so the tendon doesn't shorten instead.

Since we had a break from doctor visits this week, we wanted to let Alan out to have some fun. We'll be heading back to the office all next week for chemo. But this week, Alan got to go to Morgan's Wonderland and let the wind blow through his hair on a train ride, cheer on rocket launches, go swimming, see a helicopter dropping Easter eggs, hunt for eggs and see a fire truck up close. He's playing a lot, trying to climb the living room slide and figuring out how to swing his leg around so he can go down. We've even seen him try to stand independently - yes, he's mostly balancing on his good leg but he's starting use the bad leg too.

We have an appointment for a fitting for Alan's AFO. Unlike the one we got in the hospital while he was in the ICU, this one will be fitted specifically to him and will fit into a shoe. The off-the-shelf AFO he has now is getting hard to tighten around his foot now that he is so active. Hopefully this will help with his recovery.


Look at all that hair!


Playing with his Easter basket Play-Doh


Spelling his name