Making a break for it

Hurray! We will be ringing in the new year in the Ronald McDonald House, not the hospital!

Doc L's fellow was happy with Alan's condition, even with our BM issue, so we are packing up over three weeks worth of toys, entertainment, food and miscellany! We are waiting on paperwork for a handicapped placard and Alan's prescriptions while we shift this mountain of stuff out. We will spend the weekend in Houston gathering things together and taking a break. Alan and Mommy will head home to San Antonio late Sunday or early Monday, while Daddy checks us out of the RMHH and then heads off to work for the next week. No worries though, Auntie Joys is waiting at home in San Antonio with Kevin to help out.

Possibilities

Alan has gone out for several walks, two of them with visitors, in his new cast. First Fiona brought some lunch and came to check on our little man while she was visiting family in Houston. We all went for a turn around the Park.

The good news is that the car seat was available today and the office was close by so Daddy could run over there to have the seat installed and pick up our loaner stroller. He worked with the technician to install the seat so he would be able to transfer it to the other car when we get home. Unfortunately, while he was gone, he missed a visit by Vivian and Kim, who came with us on another walk all around the hospital.

The OT came to adjust the loaner chair for Alan and finish up the paperwork for ordering our permanent wheel chair/stroller. Then we went for another walk in the stroller - lots of walkies today! We are hoping to be discharged tomorrow, but first Alan has to start eating again. He started the day off well, but as the day went on he refused to eat or drink anything. He hasn't had a good BM since Monday, which is another concern. These are some of the issues we need to clear up before we feel comfortable leaving the hospital.

In the cast

Alan was off to the OR first thing this morning for his cast. Doc L was out to meet us in the waiting room by 8:45 and we went straight to the PACU to see him. He was rather upset, probably from the pain of having things adjusted to be cast, and also by all the equipment hooked up to him - O2 mask (another cute penguin mask), monitoring leads, blood pressure cuff, pulse/ox monitor, and of course IV. We shed them one by one and gave him some morphine for the pain while playing Madagascar to distract him and he eventually calmed down enough to drink some juice and ask for water.

Once he settled down, Alan seemed comfortable. The cast is fiberglass with a Gore Tex lining, so hopefully it won't be too heavy or get too stinky. Doc L came by to see us again in PACU after her next procedure and was glad to see Alan calm and comfortable. We will not see her again for six weeks when she will prepare to take the cast off - mostly likely a Wednesday clinic visit and then a trip to the OR on a Thursday morning to remove the cast while he's sleeping. Doc HJ will want to see us again as well, though she is fine waiting to coordinate the appointment at the clinic with our trip back to Houston to have the cast removed.

Doc L's fellow will check on us tomorrow morning and consult with Doc L by phone since it is a holiday for the hospital. They'll make the call tomorrow if we can be discharged. In the mean time, the rehab equipment company has located a car seat for us. The wrinkle now is that because it is a specialty car seat, it has to be installed by one of their technicians. We need to figure out when it can be done, and when we can get our other car into Houston, or if it can be reinstalled into our regular car in San Antonio by technicians from another company or a hospital.

Waiting

Today was quite uneventful. We took Alan on walks in the wagon, which he enjoyed, and tried to keep him occupied with play-doh, toys and videos. Yesterday was his last day on methadone, and we did not have to push the button on the Fentanyl very often during the day today, so his pain level is becoming more and more manageable. That is comforting, since we will need to manage his pain with just oral medication soon.

The Kennedys, friends of the Fannins, came to visit us today and offer their support. The PT and OT came by to check on Alan and talk to us about any questions or concerns we had. It looks like the vendor may have a demo model of the car seat we need - hopefully the timing will work out for us. Doc L was happy to see Alan out for a ride and she will see us first thing in the morning to put Alan's cast on.

More adventures today

Doc L came by this morning. We'll be off to the OR first thing Thursday morning. If Alan is comfortable, we may be able to discharge from the hospital as soon as Friday. The problem is that the special car seat we need for his cast is on back order. The OT's vendor is trying to figure something out. We may be able to get Alan back to the Ronald McDonald house by wheelchair if the weather is nice, but getting home to San Antonio is on hold until this problem is solved.

The doc wanted us to take Alan out several times a day so we've taken several rides in the wagon all around the hospital - around the unit, down to the Fountain, through the halls to the Aquarium lobby, back up to the Park, then looping up around the elevators and back up to the Pedi floor. Alan enjoyed all the sights and "fresh air" and napped when he got back to the room. While he slept, we visited with the Byall's who were in town from Colorado for Christmas. The last time we saw them Alan was still in the tummy, so they had a quick peek at our napping boy and then we went to the family room to catch up.

We also saw the pediatric oncologist Doc H2 - still no word on the pathology results, but he will e-mail the pathologist to see if there are any updates. Auntie Joys and her family came by for dinner before they returned with Kevin to San Antonio. She will be waiting for us when we get back, but everyone else will have returned home to work and school, so it was nice to spend the evening with them.


Alan enjoying the sights

Out and about

Alan had a rough night, waking several times and sleeping late. Doc H's resident came by to check on Alan and removed one more bandage. After an early visit by Doc L's fellow, Doc L came by and was very happy with Alan's condition. We're on track to have his cast put on Thursday morning. She gave us permission to take Alan out in a wheel chair or wagon once the PT adjusted his brace.

The OT came by with the rep from the medical equipment company to arrange for Alan's specialized car seat to accommodate the cast and to go over wheel chair options. Then it was time for Alan's walk. He was so happy to get out of the bed and out of the room. Unfortunately, the enormous playroom was closed so we circled the unit several times. During our first circuit, we ran into Auntie Joys and big brother Kevin - they were so surprised to see us out for a walk. Alan was just happy to be out and about!


A happy boy out for a walk

A quiet day...

Our first full day out of the ICU was a quiet one. The floor pediatrician came for a quick check up, as did Doc HJ's resident. Alan is doing fine, so there wasn't much to say. Some of the ICU nurses came to visit just to see how he is doing. What a little charmer! and what wonderful nurses we had.

Alan has been getting Fentanyl as needed throughout day, about once every 2 hours seems to be the sweet spot. The nurse today noted that wasn't very much, so we're happy he's slowly starting to get over the pain. The methadone is being administered in ever smaller doses to help him out.

The other thing we are fighting is boredom. He is quite immobile, in a way he hasn't been since the tumor first wrecked his hip and leg muscle almost 20 months ago. Luckily, we have our videos (Child Life at the hospital contributed A Shark's Tale to Alan's bag full of presents and Becky sent a copy of Happy Feet, the latest addition to our monochromatic animal collection) and lots of new toys to open. Everyone has been so generous, from dear little friends like Mackenzie who sent a box from Hawaii with a monkey lunch box to hold toys and treats for our little monkey, a big sack of toys given by the Houston Rockets when their mascot came to entertain the kids at the Ronald McDonald House, to dedicated volunteers at the House and Hospital - too many people to mention! Our friend Emily knows from experience what it takes to entertained a restricted child and she sent us a box of toys to be unwrapped as the need arises. We dove into it today - Alan unwrapped a bucket of Play Doh and shapes - between that and his crackers, what a mess! It should be enough to keep him occupied until he is mobile again.

After spending the afternoon with Aimee and her kids, Mommy and Kevin brought dinner and we all got to spend an evening together as a family. Kevin and Alan loved seeing each other and it was nice to do more than exchange some quick words while passing in the hallway. If things continue smoothly, we hope to be home soon so this become regular rather than rare.


Kevin blows Alan a kiss


Opening another toy


Play-Doh goes SQUISH!!

Christmas day escape

We started this Christmas morning in ICU. The ICU pediatrician gave Kevin special permission to come into ICU as long as he wore a mask, and he was working on getting us released to the Pediatric Floor. We emptied the stockings and opened some presents while we waited and the boys enjoyed their toys. The important thing was we were all together.

After a firm admonition from the Ortho Fellow for complete bed rest for Alan, we were finally released from the ICU. We got the word shortly before noon, but it took several hours to wrap up the charting, get his room on the Pedi Floor ready, and get Alan prepped. They removed the central line and accessed his port instead. The multitude of controllers and pumps have been whittled down to one controller with two modules - one for the IV fluids and the other for the PCA Fentanyl. His foley catheter was also removed.

After a nice nap and a lot of farewells (Alan was quite charming to all the ICU staff) we moved upstairs to the Pediatric Floor of the Children's Cancer Hospital - a hospital within MD Anderson. While we won't have the same intensive nursing and pediatrician attention (though they were comforting, Alan doesn't really need it any more), things will be quieter and a lot easier on all of us. The nice thing was that Auntie Joys and her family were able to join us this evening. Auntie, Uncle and cousins were glad to be able to see Alan and spend time with us. It was a wonderful way to wrap up Christmas!


Alan loves the alphabet!


He needed a mask, but Kevin got to see Alan for the first time in three weeks


Alan naps while waiting to move to the 9th floor


Playing with one of his Christmas presents in his new room


Kevin and his new airplanes

Still in the ICU

Alan had a good night. Doc L's resident came to take a look at Alan bright and early and took down the dressings on his leg. Which surprised Doc H's resident who came to look at Alan later in the morning because they were planning on doing that tomorrow. Ortho vs Plastics... but they both thought his leg looked good. However, Ortho wanted to keep Alan in the ICU one more night. We didn't get a chance to ask him if there was a specific concern, or if he just wanted to be conservative.

Plastics and Pedi Surgery were fine with it and the ICU pediatrician thought Alan was doing great, so we are quite frustrated. The ICU pediatrician gave us the go ahead to try any food we thought he would eat, so Alan got chicken noodle soup and ice cream for lunch. The broth was popular for a while but he wouldn't even try the noodles. He had a little of the ice cream, then he was done. He didn't touch the graham crackers that came with the soup. Of course, he's still getting a feed of 40 ml/hour through the ND tube, so he's not really hungry. Alan took care of that this afternoon by pulling out the tube. Hopefully, with a little time he'll get hungry and start eating. He did eat half a Baked Lay potato chip at dinner!

Alan is definitely getting cabin fever. We've been in the ICU for over two weeks now. He's wiggling a lot, which gets him out of position in his brace. There's not a lot we can do about that. It will be better when he's in the cast next week. We'll be opening some presents in the ICU tomorrow morning, and a good thing too. Auntie Joys reported that he was getting bored with what he had and was frustrated. We're praying that along with some new toys, he'll have some new scenery at the Pedi Floor instead of the ICU.


Mmmm, ice cream!

Busy afternoon

After this morning's surgery Alan showed no sign of wanting to nap, and good thing since it was a busy afternoon. Doc H2 came by to check on Alan's progress. He is still waiting on the pathology report on Alan's tumor. It is taking longer than normal, probably because they need time to de-calcify the tumor. Until then, we will be waiting to make any further treatment decisions. If and what kind of chemotherapy and/or radiation therapy will depend on confirming the pathology of the tumor and the margins achieved, in conjunction with Alan's treatment history. If radiation is necessary, he is likely a candidate for Proton Therapy. Many of our little friends at the RMHH are going through Proton Therapy and it would be a wonderful option if we have to look at radiation.

The ICU OT came by to work with Alan. And by "work" we mean "play". She came with some stickers and paper, and after a little encouragement, Alan was peeling dots and rectangles and decorating the paper. She was trying to get him to cover a dot she had drawn on the paper, but he wanted to make a line of dots first - so typical of Alan! We also worked on stacking, nesting, and banging his bath cups. We wanted Alan to be lifting his arms, especially his right arm, so we held the stickers, papers and cups up and away so he would have to reach. He was having fun!

Then Santa came on a trip through the ICU! The ICU staff had come in with Santa with toys and a balloon with lots of curling ribbon, just the way Alan likes it! Ripping the wrapping paper off the presents proved to be too much for him, especially after all the therapy work. He was able to pull the balloon down to play with the ribbons though, especially when we attached a sticker it!

Then Auntie Joys came by to kiss toes and spend the night. She had arrived in Houston this afternoon with her whole family and big brother Kevin. If we can make it out of the ICU for Christmas, there will be lots of family!

The ICU pediatrician decided that Alan can start trying some clear liquids, so we offered him apple juice, chicken broth, and Popsicles. The juice was a hit and the broth was well received. Alan didn't care for the Popsicle though - surprising since he usually loves them. It's a good start though, and a baby step towards getting that ND tube out. Alan may be thinking the same thing, because he's been pulling at it. For now though, it has to stay put.


Alan ripping his present open


Ribbons! And you can see his sticker work too!

Surgery Part Two

After a quiet evening last night, waking at 2 AM for about an hour, Alan was up at 6:30 AM. He was NPO because of the surgery, so his feeding tube was cut off at midnight. He was very cranky this morning because we couldn't give him the water he asked for. He was wheeled out of ICU at 7 AM, where a big crowd had gathered to send him off. We've been here in the ICU for two weeks, during which Alan has charmed a lot of people (seeing him sleep with his hands tucked behind his head gets a lot of laughs, and apparently a similar picture of him in his ClinicStation profile usually draws a crowd around the nursing station PC).

The surgery started at 7:30 AM and by 8:10 AM, Doc HJ has already come out to brief us on her part of the surgery. The stent was removed very easily - apparently sometimes the stent can adhere while it's healing but that was not the case with Alan. Since there were no problems, they didn't have to scope. Over the next few days, they will 'train' his bladder - clamping the foley catheter so his bladder will hold the urine for a while, releasing, then repeat. This will test and strengthen the sutures.

Things are starting off well, and we will update as the docs come out.

10:00 AM

Doc L has come out to briefs us on the closures of the incisions on Alan's leg. Things have been going so smoothly - apparently Doc HJ's part went so well that Doc L wasn't ready when she was done. They were able to close all the incisions without needing any skin grafts! We were a little bit worried about that - last night was had been talking with Aimee about skin grafts. They can come from the patient himself, though Doc L didn't like that option because Alan is so little and has thin skin because he's so young. The other options would be cadaver or animal grafts., but one of us donating the grafts would not be a possibility. We're glad that it wasn't necessary.

If there are no complications, the plan is to transfer from the ICU to the pediatric floor tomorrow. They will schedule a return to the OR to put on the spica cast next Thursday so his skin will have a whole week to heal. Then, a few days in the cast in-patient to be sure he's eating and comfortable and hopefully going home at the beginning of the new year.

Doc H was finishing the close on Alan as she left the OR, so we should be able to see Alan soon.

10:15 AM

Wow, that was fast! We just got word that Alan will be back in the ICU in five minutes!

10:30 AM

We made it back to the ICU in time to see Alan being wheeled back in, holding the PSP and watching Cars. It was so good to see him awake, calm and not intubated! He was intubated for the surgery, but is breathing on his own already. We were a little worried we would have to go through the whole extubation procedure again, which could delay our departure from ICU.

The Nurse Anesthetist was very happy with how Alan had handled everything. He told us that Alan was rather upset when he woke, but Alan has always been a cranky waker, so that did not concern us. He came out of the OR on fentanyl to calm him and morphine for the pain. He's still NPO for now, but we should be able to give him some ice water swabs to moisten his mouth in half an hour or so.

Alan being wheeled back to ICU watching Cars

After the marathon two weeks ago, this surgery was speedy and smooth. We're so happy to be back in the room with Alan, watching Madagascar and offering him ice water to dip his swab in!

Hey, it was Thanksgiving *last* month!

Medically speaking it's a slow day - Doc L and Doc HJ came by with their residents to get consents for tomorrow's surgery.

However, it's been a busy day for visitors. The Fannins came by again, this time to meet Alan and drop off some gifts from their church. We all joined hands as Pastor Fannin said a prayer for him. Mr. O'Brien, the father of one of Kevin's teachers, dropped by with a gift from the Hardy Oak PPCD/RSG/ALE team.

The Miller family also came to visit. The Millers adopted us through the Houston chapter of Candlelighters, an organization that supports families of children with cancer. They spent a Christmas in the hospital a few years ago when their oldest daughter was at TCH, so they know how stressful this is. Their son is Kevin's age and their kids had fun shopping for us. It was such a pleasure meeting this family!


The Miller Family

We could write a post on this blog every day thanking everyone who has supported us and it could never be enough. Gifts, money, time, effort, prayers, good wishes and encouragement - it has all been invaluable! We have also been receiving messages from the friends and families of everyone who has been sharing Alan's story and asking for prayers on our behalf. Everything has given us strength and we wanted to say how much we appreciate it. Thank you!

Playful today

This has been Alan's first full day off the continuous narcotics - his pain killers are now scheduled. With the fermoral nerve block catheter removed yesterday, that's a lot of meds removed in one day. It took Alan a while (as well as a bolus of his remaining painkiller) to settle last night. He was pretty playful this morning once he was comfortable, stacking and crashing his nesting cups, playing keep-the-foot-away-from-Mommy, giving Daddy the Fist of Fury, and playing my-hand-is-on-top with both of them! He even sang along with the ABC song a little. He's been saying a few words, but with a soft, kitten-like voice.

After the usual parade of medical visits this morning, Alan had a nice long nap this afternoon, probably to make up for the sleep he missed last night. There was some more pain this evening, but Alan finally fell asleep around 11:30 while watching his Blue Danube DVD.

Dad is back...

Daddy has returned from training and spent the night with Alan, so he got to speak to Doc H's fellow who came by in the morning to check on Alan. He was happy with the way things were healing so it was a pretty quick visit. What wasn't quick was the clean up from Alan's BIG poop, which got quite messy. They ended up removing the femoral nerve block catheter because it was stained. They will just use IV medications for the pain, but it seems to be enough since Alan seems to be comfortable.

Doc L came to change the dressings on his leg. After having a good look at his leg, she is planning on taking Alan to the OR on Thursday to close up the incisions on his leg. Some of the incisions may require skin grafts - the swelling from a fasciotomy could take months to come down, even with a wound vac, so a skin graft will speed up the time needed to close the wound and allow us to put the cast on. The cast itself will be a separate trip to the ER.

Alan has shown more movement and interaction today. He played "keep away" while Mommy was trying to nibble on the toes of his left foot, with quite a mischievous grin! He played "fists of fury" with Daddy, with Daddy providing the sound effects. He has mostly been using his left hand, which has us a little concerned. We took the blood pressure cuff of his right arm to give him a break and encourage him to rebuild the strength in that arm. He started to use both hands to stack Styrofoam cups so we'll bring his bath time nesting cups for him to play with. He's been pretty happy today other than fighting his breathing treatments, resisting his PT exercises, and expressing annoyance when Mommy leaves the room.

Speaking to the ICU pediatrician, though there are several factors (small in themselves but big when combined) keeping Alan in the ICU, the biggest single factor is the heavy medications on continuous drip he needs. Those are slowly being phased out, and by tomorrow he should be on scheduled doses only. These can be administered on the pediatric floor, but with the trip to the OR on Thursday, they may not transfer him until after we've had a night of observation post-surgery. We're still holding onto the hope that we can be out of the ICU by Christmas!

Easing off

Alan had a good night, sleeping comfortably and only waking when the respiration therapist came in to do his breathing treatment. Sara was happy to report that his O2 levels never went below 95, so that is one less annoying tube for him to deal with! Auntie Janet came in to sit with him this morning while Mommy had some time with Kevin.

The PICU doc came in to check on his medication levels and was quite pleased to see that not only had they found a mix to make him comfortable, they were even able to ease off on a few of them. He will continue to slowly wean Alan off the narcotics, depending on the occasional use of Propofol or a bolus of Fentanyl when they need to sedate him for dressing changes or adjusting his brace.

Alan had two very nice naps today and was happy watching his movies. After one of the naps, he was watching The Big Bang Theory with Mommy who was very happy to hear him say "Bang!" at the end of their theme song. He also grinned and giggled at the tumbling and wrestling pandas in his Ultimate Pandas DVD. It is so good to see him smile!

A good day

Alan had a good day. There was the usual parade of doctors, fellows and residents, but they were all happy with the progress Alan was making. The PICU pediatrician confirmed we are over the hump as far as the risk of Alan going back on the ventilator goes. He was doing so well that I asked to remove his nasal cannula this afternoon - his O2 levels were good even when the cannula was dislodged and it was just annoying him. His levels continued to be good even with it removed, and we're not worried because our friend Sara who is here to help is a pro at reading O2 levels.

There have been some fussy periods - he's still shaking off the effects of withdrawal. The methadone can take up to 24 hours to work, but he's doing much better. He has been asking for water but we can only give him a little at a time. Sara has taken over from Becky's water swab duty, but we're so happy he's asking for it, we don't mind. We were observing that despite the harrowing week he's had, Alan has lovely rosy cheeks. He's been feisty today too - all signs that our boy is getting his energy back.

We've added Kung Fu Panda to the DVD rotation and he's had two nice naps today. Hopefully he will be able to sleep well tonight. It's been a long week in the ICU but everything today has been an improvement!

Today's plan

Alan made it through the night breathing well on his own and with great O2 levels, so they took the ventilator out of the room. Yay! We're still trying to manage his withdrawal from the narcotics though. Children Alan's age metabolize the drugs very quickly, so much that they start having to double the dose every 48 hours. Alan had been on high doses to manage his pain for a week, which they then cut off cold turkey in order to get the tube out. They are reintroducing them in combination with the new ways of pain management to find a level which will make him comfortable, then they will start easing off them slowly.

They stopped his feeds late last night/early yesterday morning in preparation for the extubation, and they kept him off yesterday to be sure he was adjusting well. We had been up to 35 ml/hr, but we're starting at 20 ml/hr this morning. We'll work our way back up.

The PICU doc has also stopped the Lasiks. Yesterday he was happy to have Alan in equilibrium - fluid output equaling input. His swelling had gone down and repeated x-rays had shown his lungs were clear, so he no longer needs help getting rid of excess fluid. It's a good plan for today. We'll see how many times Alan watches Madagascar this time!

Big step

The ICU pediatrician came in to discuss the plan for today - preparing to take Alan off the ventilator. They are easing off the Versed and reintroducing the Propophol - Propophol is faster acting and will wear off more quickly when stopped. They want Alan awake and alert when they take the tube out so he will breathe on his own. He mentioned three things that might happen when they extubate - swelling along the airway (this has been checked and is not a problem), water in the lungs (his lungs are clear now, but once he's no longer on the positive pressure from the ventilator that may regress and the only way to fix that is to put him back on), and if the pain can't be managed at levels safe without the support of the ventilator (cross your fingers!).

Before they attempted this though, Doc L's fellow came in to change the dressing on his leg. The leg looked good, though they will still wait until the next dressing change on Monday make a decision on when to go back to the OR to close the wounds. Doc HJ's resident and Doc H also came in to check on Alan and were happy with what they saw. A nurse specializing in skin and wound care came by to check on Alan and gave some instructions to keep his recovery going smoothly. Doc KP came to work on the mixture of Alan's pain relief. She decided not to re-insert the catheter for the sciatic nerve block since the femoral nerve was the more important one and she didn't want to mess around his wound any more than necessary.

Once all this poking and prodding was over and Alan woke up, they turned off the ventilator and let Alan breathe on his own. He had been getting upset so we moved quickly, hoping that taking all those tubes away would make him more comfortable. He did well with the machine off, so they went ahead to pull the tube out. He really started crying then, despite Ultimate Pandas and then Madagascar playing on the TV. This crying looked to be due to pain rather than frustration, so they eased up the medication. The PICU doc was actually pleased with the energetic crying since Alan was taking deep breaths and this would keep the water out of his lungs. Alan was also shaking - he had been on narcotics all week, and he was going through withdrawal now they were being reduced. The PICU doc gave him Methadone and Ativan to help him feel more comfortable.

After the drugs had a chance to work, Alan switched to more frustrated crying, but was eventually soothed by the movie and water-moistened sponge swabs - he grabbed the swab out of my hand and rubbed it on his mouth himself. Our friend Becky had come to help today and he kept her busy dipping his swabs in a cup of cool water.

He watched Madagascar twice before we switched to Ice Age, then fell asleep for a nap with both hands tucked behind his head. By late afternoon, the PICU doc was quite confident that Alan would be able to stay off the ventilator. It was a long afternoon, but with great results!

Some more baby steps

We had a few more steps towards being extubated and leaving the ICU. The nurse practitioner came in to discuss the further reduction of sedation today, and the ICU doc came by later in the day to lay out the conditions under which they would take the tube out. The machine is down to the lowest rates right now, and if he doesn't have any problems with that tonight, they will give him a chance to breathe on his own without the machine making breaths for him tomorrow. If he does well with that, and there continues to be no swelling along the tube, they will pull it out.

Since we are preparing for him to breathe on his own, Doc KP, an anesthesiology/pain management doctor, came by to discuss some options. We need to look at alternative methods of taking care of Alan's pain because we don't want him to get too sleepy on the narcotics once he's breathing on his own. Doc KP suggested an epidural which would take care of pain in the abdomen and upper leg, but would not take care of the pain in the lower leg very well. Doc L had asked for a block on his femoral and sciatic nerves, but Doc KP was hesitant because she would have to go through his incision site and the nerve blocks would give no pain relief to his abdomen. Upon further consultation though, Doc L had expressed concern that she and other orthopedic surgeons have about the long term effect that epidurals have on their patients. She was not worried about Doc KP going through the incision to insert the catheters so the team went ahead with the nerve block option.

They had to remove Alan's hip brace for this procedure, so the ICU PTs came back to properly adjust the brace. They also brought in the Pedi Floor PT get things started on acquiring a stroller and car seat that will accommodate his cast. It's nice to know that is being taken care of.

Doc H's fellow came to check on Alan's incisions and Doc HJ came by for a quick peek. They were both happy with what they saw. Doc L also came to check on him - we confirmed dressing changes on Saturday and Monday.

Finally a member of Doc KP's team came to hook the catheters up to pumps - Alan has three stands now, one for the three clusters of IV pumps, one for the feeding pump and now one for the nerve block catheters. Unfortunately, the sciatic nerve catheter had come out - probably during the clean up after Alan's big bowel movement (it was funny to see him making faces and then realizing that looked like his poopy face). Doc KP is going to be visiting us daily anyway, so we'll talk to her in the morning about what to do next.

The fever still comes and goes, which has the ICU doc changing up the antibiotics and giving Alan Tylenol. They are also giving him supplementary potassium because of all the lasiks he's been getting. Alan was alert for quite a bit today, including yet another showing of Madacasgar, his PT exercises and for our good friend Denise who came to help out and kiss wiggly toes.

More active today

The nurse has been easing off Alan's sedation (and increasing the pain medication to compensate) so he can be more awake and aware, which is good for him even if it's only for a few hours at a time. The latest x-rays have shown that his lungs are clear, so it's another slow step towards getting the tube out.

He stayed awake for a couple of hours this afternoon while the ICU PT came by with some exercises to keep his left leg (the one not affected by the surgery) healthy. He is also getting a brace to keep the left foot in a flexed position to prevent foot drop while he is confined to the bed.

As a result of all this activity, he was awake for a visit from Santa Claus! He also enjoyed watching his Madagascar DVD, even squeezing my finger and wiggling his toes while King Julian was singing I Want To Move It, Move It. That, along with his Ultimate Pandas DVD, seemed to hold his attention today - all we are missing is Happy Feet to complete his monochromatic animal parade. For some reason, he likes black and white animals.

Doc L came by for a quick check on Alan but other than being happy with what she saw and letting us know they would be changing the dressing on his leg on Saturday and Monday, there was nothing new from her. She will look at the decision on when to take Alan into surgery to close the incisions on his leg on a day by day basis.

Doc HJ came by to see Alan after a long day of surgeries. The main thing she wanted to check was the drain from the bladder, to be sure there wasn't any urine leaking. She was happy with that, but because of the swelling around his scrotum (a result of the hemipelvectomy) the foley will probably stay in longer than the 7-10 days originally anticipated, since Alan will not be able to urinate with the swelling. The stent is made of silicone so there is no problem with it staying in until that swelling goes down.

Alan has had a bit of fever coming and going - none of the cultures they have taken have come back with anything. Aimee told us that a little fever is not unusual after such a major surgery or when a patient is not moving like Alan. It's bringing his blood pressure down a little, but the nurse is keeping his fluids and Lasiks up. He is also getting antibiotics and Tylenol as well as cool compresses to keep him comfortable. Doc L is not worried so we're not too concerned.

More new technology

Late last night Alan had his bed replaced with a newer style bed that has several technologies for patient therapy. Not only does it have an inflatable mattress that cycles on a user programmable schedule to help prevent bedsores, but it also can be programmed to tilt and rotate for the same. It is the same type of bed used across the street at Texas Children's Hospital. However, Alan is so little that some of the rolling still has to be done manually with rolled up towels and sheets to prop him in place.

Very early this morning, Doc H and Doc HJs fellows stopped by to install a device called a Wound Vac that helps relieve swelling in wound areas. This device helps the wounds in his leg close by removing excess fluid... it's so portable the docs have sent folks home with such a device.

Right now, the main thing keeping Alan in ICU is the intubation... once he no longer needs that, he'll be considered able to be moved to the regular pediatric floor.

Small improvements

Doc L came to change the bandage on Alan's leg again this afternoon. We're looking at surgery some time next week after a special vac/drain has been applied to his leg to bring down the swelling. In the mean time, on the recommendation of the ICU pediatrician, we will be getting a new bed that adjusts pressure under Alan and will also be rolling him from side to side in order to avoid bed sores.

Alan was awake a few times through the day, though still calm. He's getting used to the drugs, and the nurse commented that little patients like him will often metabolize the drugs quickly. They will keep playing with the mixture and level. Doc H also came by to check on how his wounds were healing and he was happy with what he saw. The overall swelling has gone down, and he's tolerating a higher rate on his feedings.

Getting into a routine

Things have been settling into a routine. Alan has been resting comfortably while the staff keep him sedated and manage his pain. Alan had a small bowel movement today, which is progress from even a few days ago. His urine is almost completely clear. Hooray for poop!

He's getting food through an ND tube as they ease off the IV nutrition - starting off with just 5 ml per hour so his digestive system would keep working. The ICU pediatrician raised the feeding rate up to 10/hour this morning since he had been tolerating the feeding well. He also increased the rate of Lasiks to try to get the swelling down more as well as a supplement that would help Alan get rid of the proteins in his blood from muscle breakdown. Slowly, slowly they're getting Alan's body back into balance.

Doc L stopped by today, she's been pleased how everything looks. She wants to wait a little longer for the swelling to go down before she can sew up the incisions on his right leg. We will probably be in ICU until the weekend. One of Doc HJ's partners stopped by as well - things are looking good... they expect he'll keep his catheter and stent for 7-10 days (we're on day 4 right now).

Finally, there was an x-ray of his lungs and an ultrasound of his kidneys. They just want to make sure there are no blockages at all with his urinal tract, especially in the repaired ureter. As for the culture from Alan's lungs on Saturday, because of the weekend they only started the testing on it today. It will take 24 hours for the full results, but so far so good.

And now for a few smiles and laughs, because if we can't laugh, we'd never stop crying:

• when we first went to the bathroom in Alan's room to wash our hands, we looked around for the faucets to turn on the water. The base of the faucets were there, but nothing to turn them. It took a minute or two to realize that these sinks were controlled by foot pedals!


• on a related note, as befits a cancer hospital, MD Anderson is full of hands free dispensers, which leads to a lot of ice and water all over the place as we try to figure out the sensors to turn them on and off.


• because of the holiday season, that here has been a lot of musical entertainment in the halls of MD Anderson. This morning, there was a group of young people in the Fountain Courtyard singing and dancing - it was real life Glee!


• while Alan was free of intubation on Saturday, we often gave him a little water on a sponge to moisten his mouth. He would eagerly stick his tongue out for it, and a couple of times we asked him if he wanted more water. He roughly, but distinctly, said "Yah! Yah!" with much enthusiasm.
  
  

A quiet night

Alan slept quietly and without incident through the night. There was a little concern early this morning, but it ended up being due to a loose lead that had been dislodged by his brace rather than any real problem.

Doc L came in this morning to change the dressing on his leg and was very pleased with how everything looked. The swelling on his leg was enough that she would not take him back to OR on Monday to close the incisions yet. They are adjusting the fluids, medications and supplements to help him flush out so the swelling go down and we'll revisit the issue. She will adjust his brace on Monday though, to match the angle it will be in the spica cast.

Since Alan has been resting comfortably, we expect to settle into the ICU for the foreseeable future. The docs prefer to keep him intubated and sedated under close monitoring. He's always been very stubborn resisting sedatives and anti-anxiety meds, so being able to give him enough to stay calm is better done under the supervision of the ICU. It's a little inconvenient in some practical terms for us - no food, drink, or cell phone use in Alan's room, the floor, or waiting room. We have to walk out past the elevator into one of the hallways. It's a small price to pay for the level of attention that Alan has been getting.

A long day

Alan slept uneventfully until about 4 AM this morning, where we noticed he would sleep for a little while and then wake up upset, with comforting by water using the little sponge on a stick. However, the doctors were concerned about his O2 levels, and so started a treatment by IV that would adjust his ph level, as well as giving him Lasix. Both treatments would be used to increase his rate of urination, hopefully easing the swelling and fluid buildup.

He responded to this, sleeping more and longer, with less work while sleeping...increasing the O2 level getting into his lungs. Several docs came by to check on him, answering our questions, and generally being pleased with his progress. Also, he received a chest x-ray to check on his lungs.

Alan had a quiet afternoon, drifting in and out of sleep. He loved having us give him water with a little sponge on a stick, and at one point slept with one of our fingers in each of his hands.

After dinner though, he was getting upset and no hand holding or water would comfort him. The nurse and respiration tech were also concerned about his O2 saturation levels, so the ICU doc made the decision to reintubate him and up his pain meds. The x-ray after they intubated him show that his lungs were a little worse off than they were this morning. They drew labs and the ICU doc is sending in a culture from the secretions from his lungs to be sure there isn't anything growing.

Alan is resting much more comfortably now, and between this and the new pain meds, hopefully this will let him heal more quickly.

A note from Dad...

Alan,

I wish I could take the discomfort away from you and let me experience it in your place. The pleading look you give me during your brief periods of being awake just tears me up, knowing there isn't more I can do. At least I know that although I can't hold you yet, that even just gripping my finger with your hand seems to help, because you relax and fall back asleep, even if it's for a short time. I know because of being intubated that the small, raspy croak you make is you trying to cry, to let me know how much you hurt. I do hear you son, me and your mom and all the people that love you and care for you want to make it better.

It will get better son, we promise it will.

Love, Dad

He awakes...

The doctors have been pleased with his progress today, so they tried turning off the ventilator to see how he responded, as well as lowering the sedation for sleeping. The idea was to make sure Alan could breathe on his own before extubating him.

While that was going on, Doc HJ stopped by to see how he was doing. She was pleased as well about his progress. Our concern of course was seeing how strong he was before the surgery, if there was a possibility he could hurt himself before he had a chance to fully heal. The main worry was about the repaired ureter and artery being damaged by his movement. Doc HJ said that those tend to heal fairly quickly in kids, and that there was very little movement he can do to strain those areas. And that the spica cast will handle keeping the bones in place.

He finally woke up, though he could only open his eyes a little bit because of the post operative swelling. He was extubated about 6PM, and has been responding well, alternately falling asleep and waking up briefly to wiggle around...especially his left leg. Most of the sedation now will focus on pain control... he still will be sore from the operation. Of course, if it were up to Daddy, Alan would stay sedated for his whole hospital stay so he wouldn't have to suffer through all the discomfort he is certainly feeling right now.

Also, our friend Valerie (who took the beautiful portrait pictures that you see on our Christmas cards) sent Alan some 'Get Well Soon' balloons. Hopefully once he heals a bit more he can play with them before they deflate. Thank you Valerie!

Thank you for your prayers and well wishes and please keep them coming...

The morning after

After being settled into the ICU, Alan had a fitful night as the nurse tried to balance the sedation and painkillers so he was comfortable. He woke up twice, trying to move before the nurse adjusted his meds. He's resting quietly now - I can even hear his regular baby snore snores.

Doc L just came by and she was very happy with how his toes and incision looked. The PT will be here shortly to fit his brace, during which they will up his sedation since it will be quite painful. Then they will try to extubate him. Since they had to put a lot of pressue on his bowel during the surgery, the NG tube will not be removed until he passes gas - we'll be keeping ears and nose at the ready. They will change the dressings on the fasciotomy tomorrow, and are looking at taking him back into the OR on Monday to close the incisions.

Doc H-J's resident also came by to check on Alan's stents and catheter since the nurses had mentioned a leak in their notes but did not want to mess with her set-up. He was happy with how things looked and said that the labs on Alan's urine output had good results. Doc H-J will be by later after she finishes a procedure. Right now, Alan will be getting a transfusion.

Alan's Surgery

Alan is off to surgery. He was in good enough spirits to play a little while all the prep and consents were taking place. We will be getting updates every two hours.

9:27 am
We've just had an update from the urologist, Doc W. He spent two hours trying to put stents into Alan's ureters. The left one went in without any problem, but in a Catch-22 situation, the mass prevented him from getting one into the right side. The stents don't do anything to prevent the urete from being damaged but they do let the surgeons know when something happens so it can be fixed. Apparently, this is not an unusual situation, so while it's not ideal, Doc L will press ahead with the surgery. Doc W will continue to be on call if they need him back.

10:00 am
I panicked a bit when we were told there was another update so soon - was there something wrong? But this was a regular update from the nurse liason that she does every two hours. It seems Doc W came out to give us a specific update since he was leaving the OR to go to clinic.

Since it had only be a half hour since our last update, there wasn't much to report. They had started putting in Alan's lines - a central line to monitor his heart and facilitate rapid response, a peripheral IV to monitor his blood pressure. If things go smoothly, we won't hear again until noon.

12:15 pm
The nurse liason came to tell us things are progressing slowly, but because they're taking their time, not because there's anything wrong. Doc M, a vascular specialist is working with Doc L right now - yet another member of Team Alan.

2:30 pm
The nurse liason did not have many details to pass on. Doc L was working slow and steady to get at the tumor so we just have to keep waiting. We were joined by Pastor Fannin (Harold's pastor from his teenage years) and his wife Vivian for a while. It was so good to have their support and prayers.

4:15 pm
Not much more details from the liason nurse other than the fact that Doc M (the vascular specialist) and Doc L were still working together. Our friend Aimee, who was an OR nurse, has been sitting with us and been giving us expert explanations. Apparently tumors have veins and arteries of their own and with the scar tissue from his last surgery, they would want to move very slowly and carefully. Still no indication of how much longer they will be.

5:50 pm
Doc L came out to brief us on what was done and what's next. Overall, the operation in general went as expected with some relatively minor tweaks and changes to include:

1. The right ureter and an artery were removed because they were 'intimately involved' with the tumor (as in were basically going through the middle), however, both were being repaired by Doc HJ as we were speaking.


2. A vein was also 'intimately involved' into the tumor but when removed, no blood flow was observed, so it's been sealed. Basically, since the blood had been getting cut off at the tumor in the vein, the body found other ways to get the blood return back, so the vein wasn't being used anymore.


3. She had to remove the obturator nerve which controls some leg movement, but she said that Alan should be able to adapt to that pretty easily as he is so young.


4. All the major nerves and arteries appeared to be fine.


5. Removed the portions of the hip as expected and attached the femoral head (upper thigh bone top) to the remaining part of the hip as she had intended. She was pretty confident in getting 'negative margins' (as in all of the tumorous material) around the tumor but expressed caution in that she suspects that at least some post-surgery chemotherapy will be necessary.

7:45 pm
Doc C, the first anesthesiologist, came as he went off-shift to update us that Doc H-J was finishing up. He was very happy with how Alan was doing and he talked with us about Alan's pain management and his immediate post-operative care.

Very shortly after, Doc H-J came out to speak to us. Like the docs before she was happy with how Alan's surgery is going. She repaired Alan's ureter by stitching it over a stent and was happy that the bladder was not involved with the tumor at all. She just had to move the bladder off the tumor so Doc L could get to it - the bladder was resting against the tumor but there were clear tissue planes between them so the bladder repair we were anticipating was not necessary. She also went in to attach the stents and put in a drain. The stents are attached to his foley catheter so we are NOT to let anyone mess with his foley except her.

Doc H, the plastic surgeon, is working on the reconstruction and closing now.

8:55 pm
We just had a quick update from the OR. Doc H is proceeding with the reconstruction but otherwise there are no further details.

We just finished webcamming with Kevin, who was excited to see us for the first time in two days. We also said good night to our friend Aimee who has been with us since 10 this morning. It has been a real comfort to have her explain a lot of the details around the surgical procedures and practices and to take our mind off things with walks and conversation. Thank you so much Aimee!

12:10 am
It had been a while since our last update, so we called the ICU (the only number we had) to see if they had heard anything. We were also hoping to transfer our things from the room on the floor to the ICU so when Alan finally came out it would be a smooth and quick transition. Amanda, who will be his ICU nurse, came to speak with us. They had spoken with Doc H an hour ago, and they were still expecting to work for a couple more hours. They have a bed ready for Alan though, so we will move things there and come back to the surgery waiting room to wait for more news.

12:35 am
Doc H came out to see us and to our surprise so did Doc L. We thought she had gone home after seeing us at 5:50, but while Doc H was closing up they noticed his right leg was blue and hard.

What apparently happened was that clots had gone down the main artery, cutting off blood flow to the leg. Doc M and Doc L were called back to the operating room to help repair the situation. The clots were removed and blood flow restored, and the leg responded by turning pink and warm again. It wasn't under ischemia (lack of oxygen due to loss of blood flow) very long, at least no longer than a tourniquet would be used, and bled well once Doc L opened up the fascia (leg muscle comparments) to relive pressure that had built up. The openings (4 long incisions on the leg) also bled well, another sign that blood flow was restored. A strange thing to say that bleeding well is good!

Doc L will not have an idea of any long term damage for about 2 weeks and not with any certainty for quite a while, but she thinks that with the short time frame and Alan's youth we can be quite hopeful that he will recover.

Doc H brief was fairly short, basically reviewing the procedure he told us he was planning on. One small bit of good news it that he was able to repair Alan's abdominal wall without taking any muscle from the quadriceps. Our concern was that Alan is already leaning hard on those muscles due to the loss of his psoas muscle on that side.

Right now we're waiting outside the ICU while he's being settled and hooked up to monitors, so we'll say good night. Our use of electronics will be limited while Alan is in the ICU so the updates will be sporadic. Thank you for all the support and prayers. The comments here have been very encouraging through this long, long day.

Pre Surgery Prep at MD Anderson

Today Alan had to be admitted to MD Anderson in order to start preparation for his surgery tomorrow. However, because part of this prep involved his digestive system, he couldn't have any of his normal pediatric drink after midnight last night... so he was NOT happy that basically he was stuck drinking water and juice for all morning and most of the afternoon.

After a morning of allowing him to sleep in a little bit, we headed off to the hospital to be admitted. But because he was a pediatric patient with a sarcoma requiring surgery, there was some confusion about where to go for admittance, lab work, etc, and in what order (admit first, then lab work, or vice versa). Alan went up and down the escalator while Mommy dealt with Admissions and he was having so much fun we wished we could let him to do that all day long.

At one point, Daddy was stuck near a window just so his cell phone connection was good enough to talk to Doc L's PA trying to straighten the issue out. Eventually, we got admitted, and a room... which we promptly were moved out of to a different room, so the charge nurse (think of the overall pediatric section nurse) could give us a room with our own nurse for more personalized attention.

Ah, time to settle in... at least for a bit, because it is unknown how long Alan will be in ICU after surgery, and if we will have to move out of the room... so we kept our footprint light to move quickly if we need to.

Warning, poopy talk ahead...those with squeamish digestive systems may want to skip this part.

Alan needed to have a 'bowel cleaning' (yes, that's as unpleasant as it sounds) before surgery, and because there was no way he was going to drink the 2 liters of Go-Lyte-Ly (pronounced 'go lightly' - those funny medical guys), we had to put in an NG tube through his nose... the same type of feeding tube he had over a year ago. Of course, since he was bigger and stronger than the last time he had such a tube in him, he fought that much harder getting it in.

He was also accessed around this time for labs and to start IV hydration, since he couldn't have anything by mouth by this point (around 3 PM local). The access went much easier than the feeding tube...mainly because he was used to it (at least as much as a kid can be used to a needle being poked in his chest).

The first attempt at the Go-Lyte-Ly didn't go well, with Alan throwing up a little bit. So, they slowed down the rate of feeding to about one 60 ml amount per 10-15 minutes. Doing a little math however, results in needing about 9 hours to get it all in him. Considering how late we started, it was doubtful that all of it could be in (and through) him before we ran out of time before surgery. The other options included stopping early because his bowel movements were clear (as in like water), or a suppository/enema.

The diapers were being changed as fast as he was getting Go-Lyte-Ly... we had literally filled up a considerable sized pail in no time. The, er, 'output' was clearing out, but never really reached the stage needed by the time midnight arrived. In addition, we had to slow down the rate he was getting the Go-Lyte-Ly because he was exhibiting the 'I'm about to puke' signs. The good news is that he was able to get some sleep near the end of this period between the intervals of feeding, having watched Ice Age, Monsters Inc, and Ultimate Pandas. He rested quietly during most of this period... we suspect he was worn out from the Go-Lyte-Ly and all the fighting he gave us when the NG tube was put in.

So at midnight, the suppository was done, and at about 1AM, the enema was done. Surprisingly, he actually fought very little during either of these treatments. We suspect because he was so tired, he was at the 'I don't care at this point' stage.

All of the treatments were pretty effective at getting stuff out of him... a couple of times during the diaper change he snuck a few drops out at high velocity (one getting as far as five feet!). Diaper changes were treated as seriously as a bomb on a short countdown...

Daddy and Alan finally got to sleep about 1:15AM, and pretty much passed out until the 5:45 AM wakeup to take Alan down to the pre-operation room.


Alan loved the escalators

Alan wanted to play Connect 4 like the big boys

A little friend joined Alan

Alan getting used to the Go-Lyte-ly

Mommy and Alan read the letters on his blanket


Alan with Mommy and Daddy

Back at the RMHH

We're back at the Ronald McDonald House in Houston. They were serving dinner when we arrived, and Alan immediately started making the social rounds. During dinner, I chatted with some fellow cancer moms that we had gotten acquainted with last week. It was like a sisterhood, trading stories of getting the diagnosis, realizing that you aren't paranoid that something is indeed wrong, finding out that the cancer is back, juggling the needs of siblings and our special zebra children. We all live in some strange existence where starting chemotherapy or radiation therapy or hearing "the cancer is just in the brain" and "they're only going to take the hip" is good news.

Since this would be his last night out before going into the hospital, we decided to let him stay up late and party. When the dinner crowd started breaking up, we went up to a TV room where he could wander around while we all watched Madagascar. He was having fun looking out the windows onto the the Great Room, climbing on the furniture, tackling the big stuffed bear and dancing around. When the lemurs starting singing "I Want to Move It, Move It" he just started dancing like crazy.

He'll be on a clear liquid diet tomorrow, so we encouraged him to drink and snack until bedtime. He enjoyed his animal crackers then fell asleep quickly after splashing in the bath. Everything tonight was so bittersweet, seeing him so happy and active. This would be his last bath for a couple of months, and the last before this life-altering, hopefully life-saving surgery. Every time he hopped, danced or jumped we couldn't help but cry a little inside. He's a tough little man, and eventually he should regain much of his mobility and activity level, but we can't help but be sad for now.


He's a blur!


Happy boy!


Hi little fella!


Tackle the bear!


Mommy and Alan having fun

Office Visit 12/6

12/06 09:33
ANC 1453

It was a quick trip to touch base with Doc A before we head back to Houston for Alan's surgery at MD Anderson. His counts were good, and so were his ears - Alan has been rather cranky, and we wanted to be sure there wasn't anything wrong. Perhaps he's picking up on our growing stress and anxiety over his upcoming surgery.

Doc A had expressed some frustration over the differing opinions of the pathologists but at this point, we need surgery to remove every last vestige of the cancer. We said good bye to the Docs and their staff, since we won't see them again until the new year.

This afternoon we will meet with big brother Kevin's playgroup for a Christmas get together, then it's back to Houston tomorrow.

Weekend Festivities

We got back from Houston on Friday, determined to let Alan have as much fun as possible this weekend. We started off with a trip to Morgan's Wonderland with friends. We wandered around the pirate ship playground and the water cannons at the wharf. There was a trip around the park in the train, then we recharged with lunch. Then we did three circuits around the Off Road Adventure and proceeded to get soaked at the water play.


On the pirate ship playground


Alan loves letters


Alan and his little buddy love the water cannons


The water tables are so much fun!


Alan loves getting soaked!


Water, yay!

It was a fun afternoon and we loved letting Alan run free.

On Sunday, we went to Doc A and P's Christmas party for their patients. Like last year, a motorcycle group from Victoria brought presents handed out by Santa who had arrived on a bike. One of the group had a child who had been a patient of Doc A's and they organized this Santa run every year in his memory. The hotel set up two buffet lines, one which was low to the ground at kiddie height - how adorable! Alan loved going around the tables and up and down the stairs. He was intrigued by Santa and happily tore into his presents, with the help of his big buddy Nicholas's little sister.


Waiting for Santa's arrival


Here comes the Santa...


... and his jolly elves!


Hey big guy!


Kevin and Alan with Santa


Time to rip!


Yay. HexBugs!


It takes a woman's touch...


Alan and his big buddy Nicholas

Another way to help

It's Emily, Collin's mama, again.

Several of you have suggested an online pay-pal account be set up for donations.

I think this is a great idea, and have asked Judy to set up an account.

If you would like to contribute in this way, please use the Donate button below to donate to Alan's family in any amount:

Pay-pal is secure, and you can be confident that Alan's family will be able to access and use any cash gifts.

Thanks again.

Spica Hip Cast

I'm recreating and extending the research I did last year on the spica hip cast that Alan will be in after his surgery. He'll be in a brace first, until the plastic surgeon is satisfied that he is healing well and then they'll put the cast on.

The first site is for babies with hip dysplasia, so lots of the suggestions are for kids younger than Alan. However, since the hip cast is often used there were lots of tips, including the use of a bean bag chair to seat him securely while in the cast.

A blog for parents of children in hip casts has a lot of stories of kids in casts for different reasons and tips, Q&A, discussions and links to a lot of things that will make recovery go better (the Cast Cooler, a specialized car seat, . Some fun suggestions were a spica skateboard for mobility (I can see Alan going crazy with this) and a play tunnel - there are a lot of posts to go through for ideas on how to set things up for Alan's recovery at home. The dad also wrote an article on how to keep the cast clean.

Additional Care Links

• Cincinnati Children's - Hip Spica Cast Care
• Vanderbilt Children's Hospital - Hip Spica Cast Patient Information
• University of Iowa Children's Hospital - Hip Spica Cast: A Guide for Patients
• Johns Hopkins Hospital - HIP SPICA CAST CARE
• Another parent-run website for other parents
• Children's Memorial Hospital - Care of the hip spica cast
• Clothing to accommodate a hip cast - sizes are for small for babies but they will make larger custom sizes for no extra charge
  

Ways to help!

*Updated:  12/4/10

Hello, everyone!  This is Emily, and I met Judy in the halls of Methodist Children's.  We were there with our own sweet baby boy, Collin, who fought cancer too.

I just wanted to post a quick note for those who are interested in helping Alan's family while he is hospitalized for his surgery.  Honestly, the thing that I believe would be the most helpful for this family right now is gift cards or cold, hard cash.  Judy has mentioned that there is a Target and a Kroger near the hospital, and gift cards to either of these would be very helpful.  Also, cash cards for meals at the food court in the hospital would be a great idea - these could also be used for gas.  Some family members are coming to help them, and they will have to stay in a hotel in Houston - if you would like to help with this expense, it would be appreciated.  Over the next two weeks, Judy and Harold will be preparing for Alan's major surgery and they will be dealing with the most severe part of his recovery - anything you can do right now to reduce their stress levels will be so much appreciated.  I would encourage you to go this weekend and buy a gift card or put some cash in an envelope and send it to them as soon as possible.  Don't delay - they need help now.  (I know Judy would not ask for this - but I will ask for them.)   Later, I believe there will be room for some more opportunities to help - toys for Alan and Kevin, help with dinners, help with Kevin, and they may need to borrow or buy a new stroller or carseat to accommodate Alan's cast.  Judy has updated a "wish-list" on Amazon for some items they will need at home after Alan's surgery:  Wish List

But for now, let's focus on what we can do to help Judy and Harold get settled this week so they can focus on their baby and what they need to do to help him.

Gift Cards - Target, Kroger, Visa.   Or Cash - for gas, meals in the hospital and everything else that comes up.  This weekend.  Or as soon as possible.

I know that Judy and Harold are so thankful for your support over these many months.  I know they will be very appreciative of anything you can do to help them now.

If you need a mailing address for Alan's family in Houston - email me at TeamCollin (at) yahoo (dot) com and I will send it to you.  Or for any other questions or suggestions or concerns regarding ways to help this family.  And leave them a comment below - tell them you're thinking about them, that you love them, that you're going to do what you can to help them - and then do it!

Thank you.

Helping Hands

We have had so many people asking us how to help out during Alan's surgery and recovery. Honestly, we're not quite sure yet. We are still processing things emotionally and figuring out logistics -some things will depend on how his recovery goes. Collin's mom Emily has volunteered to coordinate any offers of help and be a clearing house/point of contact for what we need as we figure things out.

Thank you everyone who has reached out and offered help. We appreciate the support!

Pre-op MRI

Another cranky morning as Alan was NPO for his pre-op MRI. We had to go to Infusion Therapy to access his port for the first time. From now on we can go to the Pediatric Clinic. While we were waiting for the MRI Alan watched "Happy Feet". He loved the dancing penguins, and it was funny to see his gas mask for anesthesia had a penguin on it.

The MRI took an hour and we were soon sitting with him in recovery. We ended up taking a family nap, then it was up for some juice and to get dressed. Doc L will call us with the results tomorrow. There was just a quick stop at the Image Library to order a copy of this week's scans to take back to the docs in San Antonio.

Back at the Ronald McDonald House, Alan had a great time on the playground, then sat reading with Mommy for a while. He enjoyed a mariachi band that had come to play for us during dinner and danced to their music. We finished watching Happy Feet to which he enthusiastically danced some more. It's a bittersweet thing to watch but he's been having so much fun.

We will head home in the morning to spend the weekend with big brother Kevin and Grandma. We return to Houston on Tuesday for Alan to be admitted to the hospital on Wednesday morning for surgery prep.

New places and old places...

It ended up being a nice day today, so we went to the zoo with our friend Aimee. We got to see several animals, but Alan was far more interested in the grade school kids that were at the zoo for a field trip. He wanted to be a part of their group so much, he even lined up with them at the petting zoo when they were getting ready to leave. Also, while in the antelope area, a couple of them looked like they were about to fight (they started clashing horns). Several of the boys started chanting 'Fight! Fight! Fight!'... guess who joined in the chanting?

Daddy even helped Alan be a prairie dog, with Mommy playing 'Whack a Mole' trying to get a picture of Alan poking his head out of the kids 'tunnels'. I think Mommy got one picture out of several attempts..

After lunch, we went to MD Anderson for two consults, one with a new Doc H, a pediatric oncologist similar in medical discipline to Doc P and Doc A back in San Antonio. Our consult with him revealed nothing new... it was mainly a formality so that all surgical patients have been seen by one of their oncologists. Something interesting we found out was that infantile fibrosarcoma has a specific genetic marker that can be tested for. That marker was tested for and found to be not present in the original biopsy and the tumor taken out during the surgery in January, confirming that this isn't infantile fibrosarcoma, but undifferentiated sarcoma. In general, this does not the change the overall treatment plan (surgical resection).

Our second consult was with Doc L, a sort of final 'in person' consult prior to surgery. In some ways, this was revisiting old territory explored one year ago. In short, based on the original pathology (before any chemo was started), and a look at the latest CT and MRI scan from September and radiologist report, shows that the tumor is still originating at the hip bone area. She has shared Alan's images and consulted with many other doctors, including her mentor in Boston. They want to be absolutely sure they get everything. Alan has already had a recurrence and we don't want to risk another one.

The operation is planned to be a type one and two internal hemipelvectomy, which means removal of the right hip, and fusion of the right leg femur to the remaining portion of the hip on that side. Alan will lose that hip joint, requiring a spica hip cast for 6 weeks... 3 weeks in-patient in the hospital. We will come back to Houston in mid-January to remove the cast and then every three months after that for follow-ups until she feels confident enough to hand the follow-ups over to a doctor in San Antonio.

Obviously, this isn't what we wanted to hear, but at the same time, it was not completely unexpected. We are no worse off then we were at this time last year and are trying to look at it as Alan getting an additional year of full mobility from the time this option was originally brought up until now. We finished up by going over some of the details for next week, trying to keep the model of the hip bone that Doc L had brought in to show us what she planned out of Alan's reach. For some reason, he decided it looked like a gigantic chip or cookie and wouldn't stop trying to take a bite out of it. Doc L's PA had to get Alan some lollipops. It was a nice light moment.

We are going to get him out and about this weekend and trust that his unstoppable spirit will keep him going.


Alan in the goat enclosure with the big boys

Alan playing gopher

Alan playing in the backyard at RMHH after the hospital

Alan had a great time on the slide

Pre-op CT and X-rays

It was a long day for Alan since he had to start it off NPO for the sedation needed to do his scans. We went on a bit of a boondoggle, as we were directed in several directions to get a peripheral IV line (apparently MD Anderson doesn't do CT scans with a port accessed) and then there was a little confusion whether the X-rays were going to be done before or after the CT and when they would do a blood draw for his CBC.

Ultimately they did the blood draw in the Pedi clinic when they inserted the IV line in his arm, the X-rays came first because they had to be done before he got the contrast for the CT and then we had to decide what to do about the contrast. Alan has had IV contrast for scans many times before, but this would be the first time he would be getting oral contrast too. This would require him to drink 8 ounces of juice every half hour three times - good luck with that! After some discussion with the anesthesiologist and the anesthesia nurse, we decided to sedate him and administer the oral contrast with an oral tube they would insert once he was out. While he might be desperate enough to drink the first dose of juice, he's fussy enough there was no way we could guarantee he would drink all three doses in the time allotted. If that happened, they would need to cancel the CT and reschedule and with surgery next week we had no time to mess with it. This meant instead of being out for just the 12 minutes of the actual scan, Alan would be out for the hour and a half of contrast plus the scan plus transfers - call it two hours.

As usual Alan handled the anesthesia well and shook it off quite quickly. He pushed aside the water we offered and went right to his chocolate milk - he guzzled a whole 10-ounce bottle in one long draw, never lifting his lips from the straw until he was done. He moved on to animal crackers as we did the paperwork to have him discharged.

After verifying what we need to do and where for the next couple of days, we walked back to Ronald McDonald House. The weather had cleared and it was a beautiful afternoon, but it was a bit windy and chilly to play outside. After a snack (some yummy cake for the RMH resident doggie Mogie's birthday), Alan decided it was time to work out. He climbed the stairs to the third floor then rode the elevator down - four times! He was obviously feeling better.

Tomorrow is an easier day - just two office visits with Doc L and another surgeon. We have the morning off, so if the nice weather holds we may check out the zoo!