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.

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 consult

We are back in Houston to meet with another surgeon who will be part of Alan's team - this time the plastic surgeon who would be doing the reconstruction work. There were two major scenarios we discussed.

First, in the unlikely event that Doc L decides she needs to do a hemi-pelvectomy after all, Doc H's team will be reconstructing Alan's hip. This would involve taking his fibula and using it to bridge the gap, including micro-surgery to attach the blood vessels from the graft bone to his hip. This part of the surgery would take 6-8 hours, but it will be determined early on if it is necessary, so Doc H's team can start in Alan's leg while Doc L and Doc HJ's teams finish with their parts. The blood vessels will need to be closely monitored for the first 48-72 hours after surgery to be sure the blood is flowing through them. This means his recovery would start in the ICU, where the proper monitoring can take place.

Doc H's fellow who went over this procedure with us assured us that losing the fibula would not severely impact Alan's mobility, that it was a common procedure to use that bone in reconstructions. While they do not do many hip reconstructions (about two a month) the blood vessel reattachment is done very often, as is grafting the bone in other parts of the body. The tricky part of this, aside from the fact that Alan is three years old, is that the reconstruction site is inside his abdomen.

The second scenario was the reconstruction of Alan's abdominal wall after the surgery. This would involve using a collagen mesh to prevent a hernia and possibly using one of the abdominal muscles or one of the quadriceps. Since Alan had recovered so quickly from his tumor resection in January, we hadn't realized the extent of reconstruction needed, even without the hemi-pelvectomy. We started thinking about the extent of PT Alan will require after the surgery - he's already lost part of his psoas muscle to the tumor so we were concerned about the impairment of losing quadriceps muscle too, since he has been using them to compensate. However, as Doc H had to point out, we are trying to make the best of a bad situation - this is the cost of going after the tumor more aggressively.