Radiation Treatment #3

Alan slept pretty well last night, out cold from about 8 PM to 1 AM and just one more dose of Ativan. He was asking for juice and water when he was awake which he couldn't have after 1 AM due to anesthesia restrictions. He was not happy about that.

The radiation therapy itself was a little later today, allowing everyone to sleep in a bit. It was uneventful, and we confirmed and met some of the weekend staff who will be here for his treatments on Saturday and Sunday. There was some minor confusion about the foley catheter today. An order came down as we were setting up for his treatment to remove it. However, we hadn't heard there was a change from yesterday, when the most of the docs agreed to keep it in. However, after talking to Doc H2 and getting clarification, we had it removed. Hurray, one less tube in Alan!

We definitely have noticed a difference in how Alan is acting today. More feisty and willing to move around (he yanked his pillow from behind his head at one point), but also far calmer and more willing to sleep. He's already needing less morphine, and his heart rate is steady below 100 BPM. We haven't seen that in days.

Doc HJ stopped by and was much happier in how his belly feels. She has authorized for him to be back on a clear liquid diet and the switched the NG tube to gravity. She talked about taking the NG out in the next few days since the rectal tube has been doing such a good job getting rid of the distension in his belly, but we decided to keep it in to make the administration of the oral chemo easier.

Doc H2 also stopped by a couple of times, just to see how he was doing overall. With all the confusion over all the options for Alan's treatment and competing specialists and their opinions, Daddy wanted to clarify who is the chief doctor in Alan's case. Doc H2 confirmed that since he is the one having to come up with an overall game plan, he is the doctor has the final say.

Also, Doc H2 had gave us a briefing because Alan is a high risk patient. There are two major concerns with Alan's type and location of tumor: bowel perforation or abdominal hemorrhaging. If either of those events happen, there is really no recovery for a patient in Alan's condition (and in fact a perfectly healthy child could die from a bowel perforation), and he would not authorize any extraordinary measures. Now, he said right up front that Alan appears to be improving and heading away from those dangers, so he doesn't expect anything. We are already doing everything to avoid these problems and improve Alan's condition.

Finally, Doc M came by just to check on Alan and confirm that he is on track for radiation treatment on Saturday and Sunday. She also told us the x-rays he's had for the last two days have shown decreases in the size of the kidneys, bladder and colon areas... all good signs that the various pressures are being relieved!
On to the weekend...


Contemplating Super Hero stickers while waiting for the radiation treatment room.


Alan decided to put the Iron Man sticker on his IV fluids


The machine set up with Alan's template.

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

Radiation Treatment #1 and pain management

Early this morning, we tried using Dilaudid, a more powerful anti-pain medicine than Morphine.  The results were mixed at best, so Alan was quite tired and a bit cranky when heading down for his first day of radiation therapy.

After the radiation therapy (which only took about 20 minutes), the time he was under anesthetic was used to good advantage and a PICC line was installed in his upper right arm.

Since he wasn't intubated today we did not need to go to the PACU and went straight back to his room on the pediatric floor. It was busy with quite a few doctors coming through all afternoon.

Doc H2 came by and we discussed his current and future treatments.  He suggested Temozothlomide, a chemo drug that tends to be used in concert with radiation therapy, providing an additive benefit to the radiation. It was originally developed for brain cancer but it has also been shown to do well with sarcomas.  There is some risk because it is part of the cytotoxic drug group of which we have mostly gone through already.  This is an oral drug but since Alan just loves taking medicine orally (not!), we will take advantage of the NG tube. It's a little uncomfortable for Alan to keep it in even if Pedi Surgery is ready to take it out (which they aren't), but it makes it easier to administer the chemo.

Doc HJ came to check on Alan's stomach. The x-ray still showed a lot of air in his belly, so he really hasn't been getting much relief in the gastro-intestinal tract.  To keep things from getting worse, she is putting the NG tube back on vacuum to get some air out and Alan is no longer allowed even clear liquids by mouth - just ice chips.  This will help ease the stomach bloat and prevent diluting the oral chemo.

We talked with both doctors about strategies to deal with the abdominal obstruction.  The main concern in the short term is to protect the kidneys and bowel. If we can do that we can buy time for Doc H2 to come up with a good post-radiation plan.

Doc HJ went into more detail on exactly what the tumor is doing. It is pushing on the rectum, pulling it tight and curving it like a bow string. She doesn't want to do a colon diversion since the surgery would mean a delay in radiation treatment. She is going to try to drain air and stool from his rectum with a tube - basically a bowel version of the foley catheter. This is something she can do while he is sedated for radiation therapy, hopefully Thursday or Friday.

For pain management today, we switched from a peripheral IV to a PICC line once the floor pediatrician viewed the chest x-ray confirming the placement of the line.  We were going to give him Dilaudid in the PCA but the machine couldn't be programmed with the low dose that Alan's age and weight required, so we've switched back to Morphine and IV Tylenol for now. We are starting with a fairly low rate on the PCA, but with a bolus available from the nurse every two hours and an 'on demand' augment available every twenty minutes (a clicker connected to the PCA pump has a button that will allow one of us or Alan to administer a 'shot' of morphine when it lights up green) if needed.

We need to change the dressings on the nephostomy tubes every few days, so the nurses took care of that at the same time they switched Alan from the peripheral IV to the PICC line.  We gave him a quick wash with the bathing wipes too. Alan was NOT happy about us messing with him but we got a lot accomplished during this time.

Finally, we noticed just a little bit of blood from the foley catheter.  Urology stopped by and examined him and said that tends to be fairly typical because kids move around, and so that area gets rubbed a lot by the catheter. That was a relief!


Waking up after radiation


Alan's "template" for radiation treatment


Fruit Ninja on the iPad (he's a blur!) and Sponge Bob on the Touch Pad. Alan loves his gadgets!

We are out of the ICU...

...but we didn't get to start the radiation treatment today.

Due to some confusion about if he was supposed to have gotten water by mouth last night, he wasn't released to be anesthetized for the simulation.  By the time the situation was cleared up, he lost his slot to be able to do the procedure.

Needless to say, we were not pleased by this development, and neither was the radiation oncologist Doc M.  However, he is rescheduled for tomorrow.  Normally, one day doesn't necessarily make a difference, but since this tumor has been so aggressive, any delay further narrows our treatment window.

Doctor M stopped by to give us a bit more details on what her plan is. Her treatment is to have 10 sessions, one per day. The treatments would normally be Monday through Friday, with the weekends off, but because Alan is inpatient thanks to the tubes in his kidneys, they will give him the treatments seven days a week. The idea is to concentrate the treatment early to try to hit the tumor hard versus spreading it out.  Fractionation is the term used to describe the length of time the treatments are spread out over... more fractionation means a longer treatment time.  The main immediate side effect will be a mild sunburn-like discoloration on his skin.  There are concerns for more long term effects, but we can deal with that when the time comes.

Everyone is still concerned about the possibility of a colon blockage.  The kidneys and bladder have responded well in draining, giving some relief to Alan.  But, the x-ray we had today still shows the colon distended by the tumor (not unexpected).  Doc HJ's team has been analyzing the various scans, stopping by at one point, and have conferred with Doc M to decide if they need to operate first to clear the possible colon blockage.  As of right now, we are still pressing ahead with the radiation first... but Doc M has made clear that Doc HJ has priority if they need to relieve a more immediate problem of a true blockage.

Since Alan has only had clear liquids since Friday (most of which has gone up the NG tube anyway), they started him on TPN (Total Parenteral Nutrition), which needs to go the port on it's own. That meant they had to put an IV in Alan's hand for his medications while the nutrition went through his port - more poking and prodding.

We got to meet Doc H3 today when she came by to check in on Alan. Although her primary reason to see us was going on rounds, we took the opportunity to ask her a little about her trial that we hope Alan will qualify for.

Finally, because Alan's BP seems to have stabilized, we've moved back to the regular pediatric floor, back to watching SpongeBob on the TV and having cell phone service and food in the room.  Alan has been handling this like a trooper, though with the pain killers and the various hookups, he's been content to just watch TV and relax as much as he can.



Watching Sponge Bob Square Pants

Weekend in the ICU

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

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

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

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

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

Cryo complete

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

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

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

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

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


Drinking water in recovery.


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

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!

Ultrasound and Pediatric Surgery Follow Up

It was a leisurely morning, since our first appointment wasn't until 1 pm for a renal ultrasound. Alan had slept well last night, just waking a few times to ask for milk or water. In the morning, he was still unhappy about being moved or having his leg manipulated, but was tolerating massage on his leg better. We propped him up with lots of pillows for a while to watch videos and he seemed to handle that well too. We all walked down the street to MD Anderson for lunch, and while we were in the cafeteria, he actually sat up and looked around the hustle and bustle with a lot of interest. The exertion from that must have tired him out, because he fell asleep right in the stroller in the middle of the lunch-time rush.

After lunch we dropped Kevin off at Child Visitation while we took Alan upstairs for his ultrasound. He gave the ultrasound tech the "Bye bye!"/imperious wave combo and cried when we lifted him onto the exam table, but once the ultrasound started, he calmed down and watched the pictures on the screen.

Then we were off to the Children and Adolescent Clinic for the pediatric surgical follow up. We thought this would be with Doc HJ, but because of the delay in getting the ultrasound (since we couldn't do it with the cast on), the surgeon was on her way out of town. We met with her PA Holly instead. The results of the ultrasound were good, showing only mild hydronephrosis and the results from his blood draw earlier in the week showed good creatinine levels. Doc HJ is satisfied with mild to moderate hydronephrosis, but since she had to cut and repair one of Alan's ureters, she wants to continue to monitor his renal function. So we will continue to get renal ultrasounds each time we come to MD Anderson for other scans and office visits until she is completely satisfied.

That was the last of our appointments at MD Anderson until our next follow up with Doc L in six weeks! We left the hospital to drop off the loaner stroller back with the medical supply company (our new stroller is waiting for us in San Antonio) and then returned to the Ronald McDonald House to have an early dinner on the back patio. Alan fell asleep in his stroller again so it was back to our room for another early bedtime. He asked for cookies after his teeth were brushed, which Daddy was not going to give him. When he raised himself up on his elbows to ask for them again, well, that was some hard work that needed to be rewarded! Alan has been sleeping a lot - naps and falling asleep earlier in the evening than he has in months. Being out of the cast must be more comfortable in some way if it's allowing him to sleep more. Hurray for sleep!


Kevin and Alan having a quiet moment this morning

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!

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.

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...

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.

Another MD Anderson visit...

Today we met with Dr. HJ at MD Anderson, a pediatric oncology surgeon, different from Dr. L who is a orthopedic surgeon specializing in sarcomas. In simpler terms, Dr. L operates on tumors relating to bones, while Dr. HJ operates on tumors in kids in general. Both surgeons will be on the team working to treat Alan.

We came away from the consult feeling worse than we were expecting. First, it is now widely considered among the MD Anderson team that Alan does not have infantile fibrosarcoma (IF), but instead has a more general type called undifferentiated sarcoma (US). On the face of it, treatment is roughly the same, in that overall surgical removal is necessary. However, US (of which there can be several variants), is more concerning because it is more aggressive. In addition to surgery, chemo and radiation are often used to treat this kind of tumor. Also, this tumor has a higher percentage of metastasizing than IF, with a corresponding lower survival rate.

Obviously, this wasn't what we wanted to hear. However, Dr. HJ was quite forthcoming, answered all our questions, and most of all, assured us to not 'jump the gun' yet and assume the worst. One bright spot in this conversation was that she knew of our case from last year, and had consulted with Dr. R on the case long before we even knew she was going to be on the team at MD Anderson, making us feel better because she is already well informed on our case. She doesn't want to make any final say until pretty much the day of the operation, where she can get a good, direct look, with up to date CT and MRI scans at the end of November. The surgeons will be having a meeting on the 17th to formulate their plan for Alan.

After the meeting with her, we stayed behind to answer some additional medical history questions with her PA Holly, and then went over to the section of MD Anderson that Alan will be staying in post surgery.

The section was similar to where Alan stays on his hospital visits in SA, though the rooms are a little smaller with no in room refrigerators allowed. But the family room was larger, with a real stove, sink, etc, plus a decent sized Child Life area and an absolutely enormous (as in you could almost play a tennis game) sized child play area. So we think at least his stay in the hospital will be more pleasant depending on his mobility.

After that, we ate in the food court area of the hospital since we didn't have time to eat before our consultation, and made it back to the Ronald McDonald House where we are staying the night and will be staying for the longer visits in late November and December.

We are very impressed with the Ronald McDonald House facilities and what they provide for the families going through these kind of treatment procedures. Though you tend to be more responsible for your own area (think of being a guest in someone's house vs staying at a hotel), the return you get for it is outstanding for long term stays. Indoor/outdoor play areas, full kitchen, laundry, dining areas, libraries, family TV rooms, the list goes on. An outstanding charity that does good work with the money they get. Alan had a blast going through the indoor play area and chasing the other kids playing in the area.

Our friend Aimee came by with her kids and we all had dinner together, catching up a bit and having some normal conversation... had to cut it short because it was a school night after all.

It's back to San Antonio tomorrow, we'll be happy to be home to spend some family time together while we can before things get really busy.