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!

Ultrasound and tests

Today, Alan was scheduled for an abdominal ultrasound and a kidney function test at the hospital.

The ultrasound went fairly quickly. Alan enjoyed lying down in the quiet, darkened room while watching the images on the ultrasound machine. We think he actually looks forward to ultrasounds now, because he is so fascinated by the images and sounds of his own heart and lungs.

The kidney function test he hasn't been enjoying nearly as much though. He already wasn't happy when we first got to the Radiology Pedi Prep & Hold room... he recognized it as the not fun place. Things got more complicated when we couldn't get any blood return from his port. We tried a couple of needles with no results. Eventually, we decided to go with an IV so we wouldn't be delayed anymore... because the kidney test takes some time.

The kidney test is very simple. Basically, after drawing a little bit of blood for a baseline measurement, Alan is injected with a small amount of tracer fluid. This fluid is processed by the kidneys and decreases in the blood over time. Two blood draws are done to measure the amount of decrease. The problem is that the draw intervals are one and three hours after the initial injection... so there is a lot of 'not much to do' time. At least he has no restrictions once the test starts... he can eat and drink to his heart's content. We decided to hang out in the children's ER area at the children's play section... he had fun with several toys. But he was happy to leave the hospital once we were done!

Office visit 9/28

09/28 16:10
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Today was an unusual afternoon appointment. The nurses taking his vitals told me that he had been walking to the scale for Daddy so we had him walk today. He was also eager to stand next to the giraffe and be measured. He seemed to think it was fun to have the ruler slide down to mark his height.

Dr. Patel was pleased with the counts - the slightly low red counts did not concern him at all. He sent us home until Monday.

Office Visit 9/26

09/26 11:55
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Today we got to see Patsy, Dr. Patel's new nurse practitioner, for counts. Even though the red counts are a smidge low, Alan's white counts look great. We'll come back on Wednesday to check the counts again and if they look good, we'll be off the hook for the rest of the week!

Office visit 9/23

09/23 11:45
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It was a quiet day which went smoothly. Alan was happy to get the needle out of his port and more importantly the adhesive bandage off his chest. With the heat, it has been more irritating than usual and he's had a little bit of a rash.

But the week is at an end - seven down, only one more post-op chemo to go!

Office Visit 9/22

09/22 11:46
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Another day of chemo. Alan has been remarkably calm this whole week. We think he's a little tired from school working him hard. It helps that the rate at which the chemo is administered is a little higher than last session, so we tend to be done in about an hour.

One day left!

Office Visit 9/21

09/21 11:25
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Halfway through this round of chemo and Alan has been doing real well... patient, calm, and his counts have been staying high.

We got to visit with Alan's fellow cancer fighter Nick, who was also in for a check up. While we were happy to see him, we were sorry to hear that the experimental treatments don't seem to be working. We hope to see him and his family at the ACS Halloween party in October.

Office Visit 9/20

09/20 11:34
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Day two for this round, and even more uneventful than Monday. Dad was somewhat concerned about the slight swelling Alan's right leg had yesterday evening. However, the swelling was less this morning, and Doc P gave Alan a quick examination to be sure...and even thinks Alan is 'filling out' a bit. Which is reflected in Alan's weight increase....another good sign. Doc P reminded Dad that the leg will occasionally swell and shrink on it's own for random reasons having nothing to do with the cancer.

Office Visit 9/19 Post-Op Chemo Round Seven begins

09/19 11:21
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First day of this round of chemo, and there was surprisingly little protesting. All week we will be going right after school, to keep his day short so he can relax at home.

He was tired after this day of chemo and even had a small nap once we were home. But any worries about adverse effects from the chemo were quickly dispelled once he woke up and was his normal, active self.

Alan kicking the ball

Alan was very excited that his big brother Kevin started playing soccer this week. He was so excited to be on the fields and he really wanted to get into the games with the big boys. After Kevin's game, he finally got to get onto to the field and kick the ball around a bit. Then he joined one of the big boy teams in their pre-game warm-up and calisthenics. He got down on the ground and counted as he did their exercises with them, then shouted "Stand up!" when their coaches told them to get up. Luckily, the coaches thought he was a pretty funny addition to their pre-game workout.


[slideshow - Alan wants to play soccer]

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.

Office visit 9/2

09/02 11:45
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Another checkup with Doc P. Alan has had a busy week at PPCD, as well as his first full day of preschool. Doc P was happy with what he saw. We talked about the dark red on the upper portion of Alan's abdominal scar - the section that was infected back in June. Because of the recent infection and surgery, it's a little behind in healing than the rest of his incision (a soft pale pink now).

The other issue was our next trip to MD Anderson in October. We have an MRI, X-ray and office visit with Doc L in place, but have not been able to schedule a renal ultrasound and office visit with Doc H-J. She wanted to see us six month after our last visit with her to assess Alan's kidney function. Doc P was not concerned since Alan's creatinine level have been consistently good. He ordered an abdominal ultrasound and other testing to confirm Alan's kidney recovery.

Otherwise, Doc P is so pleased with how Alan is doing he doesn't need to see us for another two weeks when we start the next round of chemo! A two week break from the office!