Weekend update

Alan has been doing well this weekend. He has shed another tether, the pulse/ox monitor on his toe. It's great to disconnect one more item! Alan has been in a such a good mood, he did more painting and he's started watching movies other than Kung Fu Panda 2 - Tin Tin and Real Steel.

We made another trip up to the observation deck with Miss Becky, who introduced Alan to a new game, Dino Diggers! Auntie Joys, Kevin, and Daddy brought lunch and we had a nice time together. Alan was feeling so feisty he demanded to go home when it was time to go back to his room. Even though he can't leave yet, we're glad he's feeling good enough to demand it.


Auntie Joys and Miss Becky are amazed by Alan's numerical prowess


Cookie!!!


Alan ran out of dinosaurs to paint...

Alan Van Gogh

Alan had a good night, and woke up feisty, demanding waffles, not pancakes, for breakfast! He asked to write, so Auntie Joys gave him her pen and notebook which he happily scribbled in. Mommy offered him paint and he had a great time painting some dinosaurs! Mommy had laid a sheet out but he still managed to get some paint on his pillow, his nose and cheeks. After painting two dinosaurs and his hand, he moved on to Play Doh. We were so happy as this the was the most animated and active he's been in a long time!


Green dinosaur!


Check out the orange paint on his nose and cheeks.

Food, glorious food!

One of Doc HJ's residents came in early this morning to see how Alan was, and since it is Pedi Surg that has the call on taking him off the clear liquid diet, we were pretty insistent that he wants to eat real food! Since Alan hasn't exhibited any nausea or vomiting and has been having regular BMs, she would consult with Doc HJ and the team. When they came on rounds, his tray had just arrived with chicken noodle soup. We were feeding him the broth when Doc H2 said we were good to give him a regular diet. Yay! Noodles with the soup! We offered him crackers while the team was still there and he pretty much devoured them. It's great to make another step forward!


Yummy crackers!

Weekend in the ICU

It has been a very busy weekend. After a night on the pediatric floor, we headed off to Interventional Radiology on Saturday morning so they could put tubes in Alan's kidneys to relieve the pressure. The IR resident came to tell us about the nephrostomy - they would do an ultrasound to see how the kidneys were this morning and that would determine what tubes they would put in. The right kidney would definitely get a tube; the left one would get a tube if it was swollen as well. Otherwise, they would put a tube in the bladder to help it drain. Either way, Alan would be getting two tubes. They would be using the ultrasound to guide the needle and then stitch the tube to his skin, covering with a bandage. Then we found out that Alan would be going to ICU following the procedure, rather than the PACU or the pediatric floor. We were not expecting that, since the last time we dealt with Interventional Radiology we went to the PACU for recovery and then the pediatric floor for observation overnight. Between the possible bowel obstruction and his high blood pressure, the docs wanted Alan to be under closer monitoring. Luckily, since the pediatric floor wasn't full we didn't have to completely move everything out of our room.
In the waiting room, the resident came out to tell us that both kidneys were swollen, so Alan would be getting the tubes in his kidneys. This will divert all the urine away from the bladder, so hopefully we can remove the foley catheter soon. There was some discussion about doing a CT for Doc HJ, but since Alan had a bowel movement that morning, they decided to wait and see rather than give him another scan.

Since we had only anticipated being away for two nights, Harold went back to San Antonio to get Kevin settled for a longer stay with friends and pack more for the rest of us. Judy stayed with Alan in ICU, speaking with Doc HJ and Doc H2. Doc HJ talked about the possible obstruction. Since Alan was sipping water with no problem by Saturday night, she was hopeful that they could turn off the suction on his NG tube to see if things were moving again. They would take an x-ray to see how things looked.

Doc H2 was happy to see that we were able to manage Alan's pain. The Fentanyl via PCA that had worked so well for Alan after his last surgery wasn't doing much for him this time. By 2 am after consulting with the Pain Service, we switched Alan back to morphine. That seemed to do the trick and by Sunday morning his blood pressure was much better. When Doc H2 came to check on Alan she pressed him on the next step after radiation, since we can't expect any more from the radiation treatment than slowing the tumor's growth. He talked about some of the clinical trials that he has been looking at for Alan, including the one involving amino acids, which happens to be run by Doc H3 who was the attending pediatric oncologist this weekend.

Because there is no food and no cell phones allowed in the ICU we were hoping to move back to the pediatric floor on Sunday afternoon, but Alan's blood pressure continued to fluctuate. The ICU pediatrician wanted to hold Alan one more night, but if things continued to stabilize he saw no problem with us returning to the pediatric floor on Monday.

It has been an exhausting and frustrating whirlwind of a weekend, but the important thing is that Alan is comfortable right now and everyone is working on making sure he stays that way. We also want to take a moment to thank everyone who has rallied to support us over the last few days. The texts, payers, posts on our Facebook walls and on Alan's Angels, the gifts and help have been a much-needed practical, emotional, and spiritual boost. Thank you all, so much!

Discharged from MDA

Last night Alan was content to watch Sponge Bob Square Pants and do a little painting. He eventually drank a bottle of chocolate Pediasure but otherwise didn't eat much. He complained about "owies" so we took advantage of the painkiller that the doctor had written up in the orders - a combination of Tylenol and hydrocodone. He was much more comfortable once it took effect. With the anesthesia messing up his sleep cycles he stayed awake quite late, nodding off around 10 pm. He woke up a few times through the night as the fluid intake (both the ice water he was sipping and the IV liquids) caught up with him and the PCAs came in to take his vitals.

One of Doc L's residents came by to discharge Alan in the wee hours of the morning. It was good news but we all went back to sleep. Alan slept in until well after 9 am. Mommy packed while Alan watched Kung Fu Panda 2 for a third time and played with his Play-Doh. One of Doc L's PAs (not Kristi for once) came by to check on us and answer any questions we might have. We were a little nervous since Alan had not had a BM since the day before the procedure. Given Doc T's close encounter with his bowel, we wanted to know what to look for if there was a problem.

We left the hospital before lunch and were back at the RMH in time for an ice cream party to celebrate the end of the school year. We let Alan play and relax for the rest of the day (he did a bang up job cleaning the windows in our room) and he gave us the BM we were looking for in the afternoon. As much as he liked the RMH Alan was eager to go home.


Last night Alan painted a cupcake coin bank.


Rolling Play-Doh while waiting to be discharged.



Ice cream party!


Alan wanted a bowl of sprinkles


Alan using his spray bottle on the window in our room.


Wipe, wipe, wipe!

Cryo complete

Doc T came out right about the three hour mark. She was confident she had gotten 50% of the tumor which is the most optimum outcome she thought she'd be able to get. There was a point where they got close to his bowel, but they stopped the freezing, pulled back right away, and started defrosting. She thinks they were able to avoid any damage since they spotted the encroachment right away. But otherwise she was quite happy with how the procedure went. In the mean time she is releasing Alan to Doc L's service, who will be the one to determine when he is discharged tomorrow.

Judy and Alan went to the recovery room where Alan was quite cranky. The anesthesiologist was surprised with how quickly he woke up. He also noted that Alan's hiccups had come back. Between those and the gas used to knock him out it seems that Alan had a lot of air in his tummy. All he wanted to do was cuddle on Judy's lap and slowly sip water. After a couple of good belches he calmed down. It seems he just needed to relieve the pressure.

Since he was awake and taking in liquids, we were moved upstairs to a room in the Children's Cancer Hospital for observation. The floor we stayed at in December 2010 was under a major renovation, so we are now in the temporary location on the 10th floor. By now, Alan was working on his third cup of water and feeling a little drowsy. For a while he was dozing hunched over his pillow, yet unwilling to give up his (open) cup of water. He wasn't happy with his right hand bandaged up with the IV, so the nurse accessed his port so Alan could have both hands free. His right hand now sported an Angry Birds Band-Aid. He did a little painting, ate a few marshmallows from a cup of Lucky Charms, but mostly he laid back and watched movies. Kung Fu Panda 2, Cars 2, and now Kung Fu Panda 2 again (by request!).

Judy saw Doc HJ by the nurse's desk and she asked after Alan. She was part of the multi-disciplinary conference that discussed Alan's case a few weeks ago. She also mentioned that she and Doc H2 were working on a paper about the difficulties with unclassified sarcomas like Alan's. They have seen tumors seemingly respond to chemo, only to come back more and more resistant. She expressed their frustration, knowing that ours must be so much greater. They are looking at solutions where the patients may need to take a medication for the rest of their lives to keep the tumor down. We would gladly take that option, but who knows what stage of research they are at. The point is, they are not giving up.

We're keeping an eye on one of the bandages on a probe site, but otherwise Alan seems comfortable, if unwilling to move around much. Hopefully as the night goes on his appetite will return. For now, we are glad he is awake and well.


Drinking water in recovery.


Up in his room, Alan is sleepy yet unwilling to give up his cup of water.

Pain Management III

After two three-day periods with two Fentanyl patches, Alan has been doing well after stepping back down to a single patch. Between the two patches and being sick, Alan had been very sleepy, napping through the day and unable to keep up at school for more than a couple of hours.

On Friday, despite being the day after chemo, Alan was able to stay for his full day at PPCD - that's being picked up for the bus at 7 am until 10:30. His PPCD teacher shared the following on Alan's Angels:

We were so happy. He has 6 momma bears watching over him at school! lol! We were thrilled with his day! We have got the balance - I think, of watching him carefully and not hovering. It is hard not to scoop him up and do everything for him. However, he wants SO much to do it himself and really won't let us do it for him. He really likes being another kid blending in with the other kids in class. That is priceless to see. You really can't spot him when you walk in the room because he is in the thick of it with his buddies. It is just lovely:)

He's been perky, even feisty to the point of trying to grab the doorway to keep from being carried into his room for bed time. Another sign that he is feeling better is that he is resisting when we give him the Gabapenten. When he was in severe pain he would welcome the syringe and even pull it into his mouth.

The fact that we can control his pain with a single patch and the Gabapenten without any Hydrocodone is a hopeful sign that the chemo is working on the tumor. Even more hopeful is that we have our happy boy back. He's been playful and happy and he's even trying to walk again. It's great to see him literally back on his feet!


Out for lunch, Alan counts all the choices on the menu.


Alan kicking back and watching the Super Bowl. All those numbers on the screen were fun!



Making a Valentine's Bag at school.

Office visit 1/23

01/23 11:37
ANC 2174

After a good day at school, we headed into the office for counts. As we were picking Alan up from PPCD, we had a discussion with his teacher Ms Anna and the school PT. Alan has been getting more and more tired and irritable at the end of long walks (usually between the classroom and the library or playground). They wanted to put out the possibility of having his wheelchair as an option so he wouldn't become too tired by those long walks. He would still be walking around on his own in the classroom and at the destinations, but while he's dealing with the lessened function because of the pressure on his nerve and recovery from the chemotherapy, they'd like him to have a little more help. While leaving his wheelchair at the school isn't an option, we'll bring a lightweight stroller they can use for those trips.

At the office, Alan's blood return came easily, though he had to lie down in order to get a sample. The counts are all good, so we'll be back on Wednesday for another check up. We talked about Alan's medications and pain management. Doc P told us to give Alan two Fentanyl patches (six days) and then we'll see how his pain is. So far they have done the trick though we are allowed to give him the occasional dose of Hydrocodone for any breakthrough pain.

We told him about the adjustments being made at school and he agreed. For now, he would also like Alan to take a break from PT, at least until the two cycles of chemo have had a chance at shrinking the tumor and giving him relief. We will reassess after his MRI at the end of February.

After lunch out in the fresh air and some ice cream, we went home where Alan slept through the afternoon. He's been working so hard!


Back at school and getting to be the circle time leader


Alan saves up all his energy to be independent at school

Pain management: The Sequel, chemo recovery, and St. Baldrick's in San Antonio

Since the last chemo treatment, Alan has been sleeping and resting a lot, but very restlessly. He was in a good mood all day but wasn't up to staying at school on Friday. He napped his way through the day, but was still tired enough to fall asleep at bedtime. We spoke to Marcia, Doc P's chemo nurse about last night's difficulties. We were worried about the medications he threw up while vomiting last night, especially the steroids. Since Marcia had given him some of the steroid by IV on Thursday, she wasn't concerned about the dose he lost that night as long he got his dose for Friday and Saturday.

Just before midnight on Friday he asked "Owie please!", his way of saying he was in pain. We gave him a dose of Hydrocodone but an hour later he was still in pain and asking for help. It was time to use the Fentanyl patches that Doc P had given us as a backup. It would take some time to work through his system - he was restless and up playing with the iPod Touch. He finally settled into a calm sleep between 5 and 6 am and proceeded to sleep through until 3 PM in the afternoon. We were a little worried at first with all the sleeping. He had a little wheezy snore and slept with a tight grip on the iPod Touch. Consulting a physician friend about the effects of Fentanyl made us feel better. The Fentanyl will make him sleepier than the Hydrocodone did, which in combination with the chemo and sleepless night resulted in yesterday's sleep marathon. The snoring just meant he had fallen into a very deep sleep - a good sign.

Another good sign? Alan slept through the night! He woke up around 7 am and asked for milk, then came into mommy and daddy's bed to sleep for another hour and a half. It looks like we have his pain under control again. We will consult with Doc P tomorrow about these developments.

Finally, a St. Baldrick's Foundation event has been organized here in San Antonio for March 11 to raise money for childhood cancer research. Mr. Cheeks regulars may remember that last year we went up to Austin, where several participants at a St. Baldrick's event there had dedicated their shave to Alan. Coda and Wyland have gone up to Austin to participate for several years, but their parents Paul and Lana had been working on bringing an event here to San Antonio. Well they have succeeded and scored a great location on the Riverwalk to boot! If you're on Facebook, please "Like" the St. Baldrick's-San Antonio page to keep up to date. Even if you are not on Facebook, you can go to the page to see information without signing up.

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.

Post Spica Cast Twenty-Three Weeks

A week after taking his first free-standing step since surgery, Alan has started walking small distances, sometimes walking as far as five or six feet! While visiting friends and family, there has been a lot of encouragement, motivation, and helping hands so Alan has been constantly on the move. He has been working so hard on walking, climbing and playing that he fell asleep for a rare nap in the middle of playing.

Being around lots of kids and interesting new adults has really motivated Alan. One afternoon, we heard some furious pounding at the window - Harold was trying to get Judy's attention because Alan had started to take some free standing steps! He's walked as far as six feet completed unassisted. Crawling is still his preferred mode of transportation when he's tired or in a hurry, but this is all very encouraging!


Alan has been working (playing) so hard, he fell asleep in the middle of a play date

======================
A video of the first day Alan walked without assistance. By the time Harold got Judy's attention and she grabbed the camera, Alan was pretty tired, and we only got 2 steps on film. He was working very hard!


[video - Free standing walk]

Post Spica Cast Twenty-Two Weeks

We hit a big milestone last night - Alan took an unsupported, free-standing step! It was a short little step, followed by a graceful fall to a foam-tiled covered floor. It comes after several days of chasing cousins and friends who love to help him walk around and explore. He was also watching the Cobra Dance from Bride and Prejudice. He's always loved that scene, asking for it again and again. This time though, he started trying to dance along! It was pretty amazing (and funny!) to watch him try to balance and wave his arms, roll around and even hop along with the movie.

Today, we were at the park launching rockets. Alan was having a grand time with Uncle Duli, flying like a plane and getting horsey rides. He kept asking for "up please" and we saw him take single steps a few more times to get to Uncle Duli. He has been so active and having so much fun, he just has to keep walking!


Uncle Duli takes Alan for a flight

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

Look what arrived!

Alan's gait trainer arrived today! A quick demo of the features and an adjustment to match it to Alan's height and he was off! Alan took to it right away - not surprising considering how often Mr. Marc had worked with Alan walking with his EduCube chair. He was even walking up and down the halls of the church with the help of the classroom assistant after Summer Fun. Mr. Marc is right, Alan is eager to walk!

Post Spica Cast Sixteen Weeks and the Team Collin Toy Delivery

Another week of hard work playing for Alan. On the PT front we got the good news that his gait trainer has been approved and is now on order. It will take 7 to 10 business days, so with the upcoming holiday weekend it should arrive the week after next.

We had a nice trip to the beach this weekend before starting Round 4 of Alan's post-op chemo. Alan was not happy with the waves coming up onto the beach - we think he wasn't feeling very secure being at eye level with the water since he wasn't walking or standing. He still had a grand time messing around in the sand, and for a while was following some tire tracks.

Today, we delivered two large wagon-loads of toys to the HEM/ONC/BMT ward at our children's hospital in our little friend Collin's honour. Our friends have been great in bringing toys to us to deliver or sending items from the Team Collin wish list. Our good friend Denise even raised money and gave toys at cost to send $350 worth of Discovery Toys to the hospital. Becky helped us take the toys to the hospital (we couldn't fit them all in our car!) and take them up to the floor where Alan and Collin had spent so much time. The nurses loved seeing Alan with his full head of hair. It was great to visit and drop off all those toys!


Alan hard at work


Playing hard in the sand


Hurray for Team Collin!


Look at all those toys!


Alan and Pam

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 Fourteen Weeks

Alan has been eating more and more! We are no longer super-charging his Pediasure with Carnation Instant Breakfast. It was becoming too rich for his taste and Alan was not drinking as much. The unadulterated drink seems to taste better to him now. He's eating hamburger buns, cheese, cookies, raisins and other dried fruit, broccoli, watermelon, ice cream, and crackers. A little more variety and a little more volume every week.

Alan worked very hard in PT - going up and down the stairs several times and then walking using the EduCube as a walker. We've also taken him to an indoor playground where he's been having a grand time climbing, exploring, and sliding. Despite the continuing medication for the infection, Alan has been very active!


Enjoying some sprinkler time


Working hard at play


Refreshments

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[video - Sliding at Pure Fun]

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