Radiation Treatment #2

Alan had a rough night again. He didn't get to sleep until very late and only slept about 5 hours before waking up at about 5AM in pain.  He was awake pretty much from then on until he was knocked out for radiation therapy this morning.

Unlike yesterday (and to be honest, most of the stay at MD Anderson so far), today everything seemed to be come together perfectly.  We arrived at radiation on time, and while they were setting up, we got to inspect the actual machine very closely and actually see how it works and moves (without it radiating us of course).  You could look up in it and actually see the shielding plates in the shape of the computer diagram.  Our anesthesiologist Doc R described the process to us, not only as a doctor but because he had been a radiation patient here in the past.

The radiation treatment takes only five minutes once Alan is asleep and in position, a beam from above and then they rotate the machine to beam from the bottom. In another piece of synergy, Doc HJ came down from the OR to put in Alan's rectal tube in just as they were starting the radiation treatment. We were so glad that she was able to get away to take care of this because we have high hopes it will ease Alan's abdominal pain. Her part also only took about five minutes and she was already back up to the OR by the time they brought us back from the waiting room.  In total, we only waited about ten minutes from the time we left the radiation treatment room until they called us back to say he was completely done! Once we were settled back in his room on the pediatric floor, the nurses gave his first dose of Temozothlomide after a dose of IV Zofran.

Warning: Poopy talk ahead

The rectal tube showed a significant amount of waste right away, which surprised us. We didn't think there was anything left in there, especially since Alan has had nothing but clear liquids since Thursday.  More importantly, Doc HJ said that once the tube was in place, a bunch of gas was released. Hopefully this will mean less pressure on his abdomen overall.

He's still dealing with pain, but some of it seems to be discomfort from trying to move things out of his bowel through the rectal tube. We saw a lot of 'poop face" today.


Doc L and Kristi came by to see how he was doing. We had a scheduled follow up in the Sarcoma clinic but since we were obviously not getting there they came by during rounds for a quick confirmation of his condition.

His red cell count was a little low so they decided to do a blood transfusion.  The pre-transfusion Benedryl made him a little doze off a  little but of course he didn't completely fall asleep.

We were concerned a bit because we were still seeing blood at the foley catheter but Urology said that it would continue.  As the day went on, we noticed it looked better and stayed that way after a good cleaning.  There was some debate about removing it, but Doc M's concerns about blockage took priority so it stays for now.

For bed time, the nurse suggested giving Alan some Ativan to relax him. With everything he has been through and tubes coming out everywhere, we figured part of the reason he isn't sleeping well is because he is just very tense and stressed. Sure enough, he was sleeping peacefully soon after the dose.


Waking up from Radiation #2


Pushing the PCA button


Dozing off post-Benedryl

Office visit 5/9/12 and an update from Doc H2 and Doc L

05/09 11:31
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Alan has done well returning to school after a two week absence due to chemo, the trip to MD Anderson and neutropenia. On our way to Doc P's office we got a phone call from Doc H2 with the results of the board on Alan's case. Doc L has convinced an Interventional Radiologist, Doc T, to take Alan's case. He warned us that the cryoablation would only take care of about 50% of the tumor. The component by the spine would need to be killed by radiation therapy. They will need to consult with a Radiation Oncologist and determine the physics of getting at Alan's tumor before they decide what kind of Radiation Therapy to use. We asked why they couldn't cut out part of the tumor so they cryoablation could be concentrated on a smaller amount of tumor cells, but apparently it has to be done on a whole, intact tumor.

The radiation had been ruled out before because they were concerned about the toxicity to Alan's bladder. They decided to use the cyroablation since Doc L will be in there at the same time protecting his bladder. Since just one treatment wouldn't kill the whole tumor they will combine them and hopefully that will knock it back.

Doc H2 also mentioned a Phase 1 trial that targeted an amino acid in the tumor. He needs to check if Alan's tumor contains the amino acid in question, but he can do that from the sample they have in storage. So now we wait. Alan's case has been moved to the office of Doc T and hopefully we will hear from her people soon.

It was too much to hope for Doc H2 to have called while we were in the exam room with Doc P, but at least we were able to share with him what we had found out. Of course Doc H2 will also be calling Doc P to go over things as plans solidify.

Alan's counts are high, probably due to the Neupogen, but we also noticed that scabbed-over blister at the end of his surgical incision had been bleeding. Doc P took a culture of the blood to be safe, but he went ahead and prescribed an antibiotic ointment and oral antibiotic. We will keep a close eye on it to see if a suture starts poking out. After we left the office we saw Alan scratching at it. Perhaps the scratching preceded the open wound - if that's the case, it's just a matter of protecting it from Alan's little hands until it heals.

Update - Doc L called us Thursday morning with a similar update. She confirmed that Alan's case was worked on by Doc T's office. Unfortunately, she had no idea of any timeline either.

CT and Results

We had an earlier CT than scheduled, which meant a hurried morning then a long break before seeing Doc H2 at the Children's Clinic. First it was off to the Clinic for an IV - the contrast for the CT does better if it doesn't go through the port. Then X-Rays before the CT (they need to be taken before he gets the contrast) than off to CT. 

During the administration of the propophol, an amusing event occurred.  It is very fast acting when taken through an IV, but you can still recognize when it is affecting you.  Alan didn't even get past a one count before he went out during his MRI yesterday.  This time however, he detected that he was getting an anesthetic and started a very loud objection... which lasted about one second.  He more or less said "You can't make me... zzzzzzz..."  We wondered if that drug is available in an over the counter form....

During the long break after the CT we went up to the new observation deck. It was being constructed last winter during Alan's surgery and recovery. It was nice to see the finished product. Alan slept off the propofol then checked out the amazing view from 24 floors up!

Back at the Children's Clinic, Alan did some crafts with Child Life while waiting to see Doc H2. We were going in with high hopes since Alan has been off pain medication for almost a month. But Doc H2 did not have good news for us. The tumor is still growing. We were baffled - how could Alan be feeling better when the tumor had grown from 6.8x 6.8 x 7 cm in February to 8 x 8 x 7 cm? Doc H2 said that the chemo may be having a clinical effect, even if it wasn't shrinking the tumor. It may also be that the chemo is killing the tumor but there hasn't been enough time for it to shrink. Tumors also have factors which are excreted which cause irritation and inflammation. On the other hand, the chest CT was clear. It's nice to have some good news.

Doc H2 would like some data on the metabolic activity of the tumor, but MD Anderson is not set up to do a PET-CT under anesthesia. The PET-CT we had done two years ago was difficult to arrange but Doc H2 will see if he can make it happen. In the mean time, he had Alan's blood drawn so he could check LDH level, which could be an indicator of tissue breakdown. In the mean time, we may be considering the low-dose oral cytoxan and vinorelbine plan. He also has a few Phase 1 trials in mind that he thinks Alan may qualify for. Doc H2 will consult with Doc L and they will present Alan's case to the conference next Wednesday.

Doc L didn't have much to add. She will be showing Alan's new scans to an interventional radiologist she hopes she can convince to take his case. She is proposing that they open Alan up so she can protect Alan's bladder and other organs while the cyroablation takes place. She and Doc H2 will call after the conference next week.


Post CT nap


Master of All He Surveys


The view from the observation deck


Painting a Mother's Day present


Glue is fun!

MRI results and a new plan

The results of the MRI were not good. The tumor is larger, more involved with the spine, growing into the nerve route and starting to push on his right ureter and kidney. They can definitely tell that the tumor has been continuing to grow through this last round of chemo. Which means we are back to square one in Alan's treatment, again.

Doc H2 brought up three options for systemic treatment of the cancer. First, is a more experimental treatment - oral Cytoxin (Alan had previously had IV Cytoxin as part of the VAC protocol) and IV Vinorelbine, which has been used for rhabdomyosarcoma but there is no data on how well/if it works on unclassified sarcomas.

Second, he works to come up with a new custom cocktail of drugs, taking into account the biology of the tumor.

Third, we look for a clinical trial. Of course, this would mean a delay in starting the treatment while we look for applicable studies and get Alan qualified.

On the surgical side, Doc L had suggested cryoablation, where they would make a small incision and insert a needle into the tumor and inject it with something to freeze it to death. The inpatient recovery time would be fairly quick, just an overnight stay in the hospital. Doc H2 and Doc L will both talk to two different interventional radiologists to see if they will take on Alan's case.

Any surgical option will be almost pointless without a systemic solution to the cancer. Otherwise it would be like pruning branches off a tree with strong roots - the branches will just keep growing back.

So we'll take the first option for chemo back to Doc P to implement while the docs at MDA pursue the cryoablation.

Of course this was devastating news. We had high hopes that the chemo was working since we had finally seemed to get a handle on Alan's pain. Doc H2 said that if it was working, we wouldn't be needing to use the Fentanyl patches at all. He had called Doc P give him the results, and Doc P asked him to continue pressing the radiation oncologists to look more closely at Alan's case.

It was a short visit with Doc L to answer any questions we had about the cryoablation and to discuss removing the hip brace from the AFO. The two surgical options she considered were the cryoablation and radio-frequency ablation. Because the RFA heats up the tumor (not optimal in such close proximity to Alan's organs) and has not been regularly used in pediatric patients, she opted to pursue the cryoablation instead.

Rather than leaving right away as planned, we met up with the Smit's after our appointment with Doc L in the hospital lobby to process this latest news. They had been told by doctors back in South Africa that there was nothing they could do for Tristan, so they certainly understood what it was like to receive devastating news, and it was good to be able to lean on them for a while. The doctors still have treatment plans to pursue, so we aren't giving up hope.

Results and New Plan

We did not get the miracle we were hoping for - the biopsy confirms that the mass that showed up in the MRI the week before Christmas is Alan's original tumor, coming back once again. A second recurrence, breaking through active chemotherapy, is not good news.

Doc L was not surprised, and she reminded us that she told us last year when we were discussing Alan's surgery that recurrence would be a very real risk. It's not an unusual situation in the Sarcoma Clinic at MD Anderson. The tumor is about 1 cm in size and is resting on the S1 and L5 nerves. It was this that was causing the pain three weeks ago that started us on the early testing. In a way, it was a blessing in disguise. Without the pain, we would have no reason to test until the end of January and who knows how much more the tumor would have grown in the mean time.

Doc L wants a new plan for the chemo to shrink the tumor and protect Alan from any possible metastasis of the cancer. She was not sure if Doc H2 had a chance to present Alan's case to the weekly Joint Pediatric Conference to see what the radiologists recommended. Since this is a second recurrence, radiation therapy is pretty much certain. Whether or not he qualifies for Proton Therapy, the radiation treatment will take place at MD Anderson, as will any surgery.

Doc L was quite positive so with the waiting for answers over, we're just glad to have a plan. And we were off to our next appointment to see Doc H2 to go over it.

Home

Alan was up late again - apparently all the fresh air at Hermann Park didn't counteract all the sleep he had during the biopsy. He was pretty feisty until almost midnight and didn't wake up until almost 10. By then we were packed up and ready to head home!

On our way out of the hotel to the parking garage, we ran into Doc L, sneaking in with her daughter for some stealth time at the office. She was happy to hear that Alan was active rather than in pain now and said to call the office on Tuesday for the preliminary results of the biopsy.

We made it home just in time to welcome Grandma for a visit!


Alan is ready pack up his toys and head home

MD Anderson visit 12/21

Yesterday we drove to Houston after arranging for our friends Sara, Pamela, and Michelle in a relay to take care of Alan's big brother Kevin.

Today was our scheduled MRI and X-Rays at MD Anderson to investigate the possibility of a pinched nerve causing Alan's discomfort and meeting with Doc L to discuss the results.

This morning started early, with Alan needing to be accessed for blood draw and the MRI anesthesia. There has been confusion before as to which office Alan needs to be at to get accessed, and the situation was still about the same, with Daddy expressing frustration. However, apparently, we are not the only ones who have had issues with this, and we noted some fixes being implemented to streamline this process in the future.

Due to this confusion and the last minute scheduling, the MRIs, X-Rays, and blood draw were delayed, not being finished until it was time for our appointment with Doc L. While Alan was in the MRI, Mommy took a Christmas card and some chocolates up to ICU for the wonderful staff that had take care of Alan last Christmas. The nurse manager Riza was there again and came down to the MRI PACU to see Alan again. Our friend Aimee came out to visit us for a while, but unfortunately we weren't able to spend too much time with her due to the delays.

Eventually, Doc L and her PA Kristi came to talk to us about the results of the MRI and X-rays as well as examine Alan. Unfortunately, the MRI pictures show a small mass around the area of the surgical area of the pelvis that wasn't there 2 months ago. Doc L had checked the scans from October just be sure they hadn't missed anything last time, and it was definitely clear. Now Doc L says not to immediately think this is a recurrence of tumor since he has been undergoing chemotherapy this whole time and that it could be an infection... which isn't great, but isn't as concerning as a tumor. Therefore, she recommended that Alan get a needle biopsy of the area. MD Anderson will work to try to schedule it just after Christmas.

Obviously, we were somewhat surprised by the results, but we will try to be optimistic, enjoy Christmas, and get the biopsy scheduled as soon as possible.


Looks who's a big boy with a nasal cannula instead of the penguin mask

Office visit 12/13

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

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

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

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

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

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

Surgical follow up with Doc L

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

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

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

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

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

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

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

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


Finally beginning to perk up, Alan drinks some milk.


Alan's scan - no tumor!


Alan and Kristi make some finger letters.


Watching Sponge Bob while we wait for Doc L.


On the way home with a snack.

Surgical Follow Up and MRI 7/27

A quick overnight trip to MD Anderson for another MRI and appointment with Doc L, except we saw her PA Kristi instead. The boys thought it was quite an adventure, with ice cream two times a day and a great big bed to romp in with lots of pillows.

Once again, Alan was very unhappy crossing the skybridge from the hotel to the hospital - he knew what this meant. First, a stop by the Children's Clinic to access his port and draw blood. He got a handful of foam letters which he hung on to for the rest of the day.

The x-rays went pretty smoothly but he fought the sedation for the MRI all the way down. Because we were seen in the Sarcoma Clinic so quickly Kristi only had the preliminary results. She will e-mail the full report when it is available, but for now we know that there is no growth of the tumor, the lymph nodes are not any more enlarged than they were in April (it is expected that they will be enlarged for quite a while because of the surgery), and there seemed to be a stress mark on top of the femur. Kristi even got to see Alan walk from the waiting area to the exam room using his new gait trainer. She took video of it for Doc L to see and was very happy with how he was walking. All in all, good news!

Even with the administrivia discussions on the parking pass, aquatic therapy and scheduling the scans and appointments for the next follow up in three months, we were done it half an hour. We were done before we knew it and on our way to IKEA!


Alan splashing in the tub pre-MRI

Surgical Follow Ups 4/20

It was a leisurely morning, but a busy day. For once, we were able to have breakfast before heading off to our first appointment - a renal ultrasound at 10 am. Alan got upset as we crossed the skybridge from the hotel to the main hospital building. This was the icky place where he gets poked, starved, and prodded. We promised him no owies today, but he's no sucker - he knew at minimum he'd be stuck sitting around all day long.

As usual, he was pretty happy once the ultrasound started. He even started seeing letters in the ultrasound images (this boy is obsessed with his ABCs!). There was a little confusion as they called us back after we thought they were done. The doctor wanted a look at Alan "live", but it didn't take very long, and we left with the knowledge that she did not see any hydronephrosis. Yay!

Doc L was happy to report that the x-rays and MRI did not show anything. She was very pleased to see Alan so active and to hear how he's been getting around. We had a lot of questions on details of how his leg had been re-attached and what some of the implications of the amputation would be. We wanted to understand the range of motion his leg should have now, and how the loss of hip could affect his body as he grows. The bladder has shifted into the space and Doc L will be keeping an eye on his spine to be sure it doesn't curve. We had not really had the time or attention to give to these questions until now. There has been some swelling of the ankle on his bad leg which had us a little concerned, but Doc L was not worried. It's not unusual after the extensive surgery he's had to have some swelling come and go, but we will continue to monitor it. Otherwise we don't need to come back for another three months. Yay!

Finally, we headed over to the Children's Clinic to see Doc HJ. We finished with Doc L early, so Alan got to play in the Child Life room. He had a great time painting, smooshing all the colours together. He painted four pictures before we got called and was not pleased when he had to stop. Doc HJ was very happy with the results she saw from the ultrasound this morning. As long as Alan doesn't have any strange creatinine levels in his blood test (she wants Doc P to let her know ASAP if that's the case), she won't need to see us for another six months! Yay!

A lot of "Yays!" today! Yay!


Alan had a great time painting!

Spica Cast Week Ten and it's off!

It was a very early morning, since we needed to check in to surgery at 5:15 am. Even so, there was a long line! All the first surgeries of the day checking in at the same time I guess. Alan was pretty content during the pre-op period, watching videos on the PSP, until someone came in his room. Then it was "Bye bye!" and the imperious wave to dismiss them. Everyone thought it was so cute.

They rolled him into the OR around 7 am, and one of us was allowed into the PACU to sit with him by 7:40. He woke up pretty quickly and started saying "See you later!" in addition to "Bye bye". Not quite so fast! He sat up a bit and had some juice while we waited to see Doc L and Kristi.

Originally, they were going to re-pad the cast and give it back to us as a bit of support for Alan to sit up in while he got used to be free again. Doc L had warned us that kids that have been in casts for a while will take some time to be comfortable with it's support when it's removed. Getting the cast back in a clamshell mode was supposed to be a bit of a security blanket/support for him. However, Alan had done such a number on the cast that it was irrecoverable. Kristi suggested propping him up with pillows and placing then around him like a fortress for support until he was comfortable on his own.

When it came time for us to get dressed and leave, Alan started crying and wailing when I tried to put a pair of shorts on him. I was worried at first, wondering if the pain he was expressing was a normal part of the recovery from the hemipevectomy or the cast. Kristi said it was a normal reaction to the loss of support from the cast we had discussed earlier. The pain from the surgery should be past by now but we still had to deal with the discomfort from the cast. Imagine how it feels when your foot falls asleep and then you have to rub the circulation back to normal in it - now multiply that by a leg and a half and months. That's what Alan is going through right now. The nerves and muscles have also gotten sluggish from lack of use and stimulation. It will take time for them to get back to normal.

Our boy is so stubborn and active that even knowing this it was quite a shock to us how sad and scared he was to move. He cried every time we moved him in and out of the stroller or car seat, or had to manipulate his legs to change him. Time, massage, and a little Motrin is all we can do right now.

Otherwise, Doc L says there are no restrictions on Alan's activities. She wants him to wear the hip and foot braces he wore before the cast was put on as much as possible to provide some support and keep the foot from dropping (since they had to release his tendon in the surgery). We left those at home in San Antonio, but we'll get them on him as soon as we get home. In fact, if he wants a particular toy, we should leave him to go after it rather than get it for him. Tough love! It's going to be hard, but Alan is a tough little man.


We were back from the hospital by mid-morning, in plenty of time for lunch - in Alan's case, a yummy frosted cupcake!


After lunch we headed out to the Rodeo for Alan to get out of the hospital for a while. All that fresh air and Alan had a nap for a while.

Follow up with Doc L

We drove in to Houston this morning to see Doc L this afternoon, following up with our concerns from this past weekend about Alan's incision. Doc L confirmed that Alan's incision was still healthy, albeit gooey. She cleaned it a bit with some hydrogen peroxide and a long-handled swab. Alan wiggled a lot at the probing but otherwise handled it better than we expected.

Apparently, a lot of the yuck we've been seeing on the gauze is sweat, sloughing skin cells and other standard gunk that accumulates under any cast. In fact, she was very pleased to see how clean we had been keeping Alan and the cast when she pulled the diaper away to check on things (spica casts are notoriously icky).

She doesn't want us to pack the area, but she sent us home with some supplies to clean and lightly cushion the incision - the bottle of hydrogen peroxide, lots of 2x2 gauze squares and a big box of long-handled swabs. The swabs are one of the items that Doc P keeps by the exam tables and Alan always wants to dive into his supplies when we're there, so when Doc L first started to check Alan's incision with a swab, we told her to give him one as a distraction. He played with that thing for 20 minutes, and Doc L was pretty tickled by his intense concentration in examining it and eventually shredding the cotton tip.

So, we confirmed our next trip back will be the second week of March for scans and hopefully removing the cast. Doc L wants to keep him in the cast a little bit longer, so we'll just have to work hard on keeping him entertained. This morning, he managed to scoot the table in front of him away and turn himself 90 degrees on his seat. Doc L and her PA Kristi agreed that Alan just might be the kid who figures out how to walk in this cast by the time they're ready to take it off.

We took advantage of this unplanned trip back to Houston to have dinner with our friends from the Ronald McDonald House, the Smits from South Africa. They are scheduled to finish Tristan's Proton treatment in two weeks, so having a chance to see them one more time before they head back was a silver lining in the cloud.

ER follow up

We spoke with one of Doc L's nurses this morning, following up on Saturday night's trip to the ER. Although Doc L was out of town, her nurse had e-mailed her for an immediate response since she knew how closely the Doc wanted keep track of Alan's recovery.

First off, the incision was already open when they put the cast on. Doc H and his team were happy with the way it was healing and wanted to leave it to granulate over. That is a big relief - we just wish they had told us that detail in the first place!

Doc L was satisfied with the report from the ER pediatrician in San Antonio, but would be happy to see us this week if we were still concerned. We were satisfied, but still wanted to get some specifics on how to take care of it - it was rather gooey. So we'll take a quick overnight trip back to Houston this week.

A friend said that we ought to catch a break this year. Well, in our strange reality, making an unplanned trip to MD Anderson the same week that Auntie Joys is still around to watch Kevin and Harold is home from work qualifies as "a break".

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

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!

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!