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.

Office visit 2/3 Post-Surgical Followup

We went to see Doc R today. This is the first time we've seen him since the morning of the surgery and the first time he's seen Alan up and about since his partners had done the check-ups in the hospital. Even though Alan had ripped off all the Steri Strips during the first week out of the hospital, the doc was pleased with how the incision was healing. A few of the stitches were working their way up through the skin, but he said that wasn't unusual - in young kids with thinner skin, the stitches sometimes surface before they dissolve. We just have to scrub well during bath time.

The whole family has been sick since Doc P told us we were off the hook from further treatment. We haven't really absorbed the full impact of the news yet. We'll be meeting with ECI tomorrow to get Alan on a schedule for therapy, and we will slowly be starting to live something of a normal life!

Surgery today

We took Alan into the hospital bright and early today for the operation to excise the tumor. We originally had a time slot late in the morning, but Doc R's office called last week to see if we could come in earlier. You bet we could! The less time Alan is awake and NPO the happier everyone is, even if it means we're up in the wee hours of the morning to get to the Medical Center on time.

Doc K was our anesthesiologist today. There were a few new things today, since the operation and recovery were going to be more involved than anything we've done before. In addition to accessing his port, they also had a peripheral IV on his foot for backup as well as accessing an artery on his hand to monitor his blood pressure beat by beat during surgery and more easily get arterial blood if necessary. Since Doc R is going to make a rather large incision and have to work around where the tumor had moved things out of their normal position, Alan had an epidural. This will help Doc K control the pain with minimal medication since it will be delivered directly to the nerve branches instead of going through his whole body. Luckily all this was done along with inserting the breathing tube after they gave Alan a little Versed to relax and then gas to put him under.

Doc R reiterated that he would only be taking out what tumor he could easily reach without risking any of the organs, blood vessels or nerves (of which there are many in the area of Alan's tumor). He also told us that he had consulted with Doc J, a pediatric surgeon at MD Anderson, on Alan's case and she concurred with his plan for the operation. While the OR was blocked for 200 minutes for the surgery, Doc R anticipated it should take only an hour and a half. It ended up being slightly over two hours from the time they wheeled him away from us for the rest of the pre-op prep until we were taken to the PACU (Post Anesthetic Care Unit) where Alan was recovering.

Doc R was able to excise two pieces of the tumor, each about the diameter of a quarter. He was confident that it was a good representative sample. He told us that what he saw was all fiberous white scar tissue - a good sign! Of course, we will have to wait for the pathologists report.

Alan woke up shortly after we got to the PACU, but between the anesthesia and the epidural, he was rather loopy. Occasionally, he would stare at the hand with the pulse/ox monitor attached to his thumb. Oooh! Glowing red light... The nurses in the PACU took the IV out of his hand before we left for his room, but the peripheral IV and epidural will stay in until Doc K does his rounds tomorrow morning.

Since Alan was recovering from a surgical procedure and not going through chemotherapy, we went to a surgical ward instead of the HEM/ONC ward we were used to. In this ward, each room is named after a NASA mission - some Gemini and Apollo missions, but mostly Space Shuttle missions. Our room is named for STS-51-A, the second flight of the Space Shuttle Discovery. How fitting since Alan and his big brother are named for astronauts! Auntie Chelle came to visit this afternoon, so we went walking around the ward to see if there were any rooms named for missions flown by Alan or Kevin's namesakes. No such luck!

Alan spent most of the afternoon and evening quietly resting. Though he wasn't in pain thanks to the epidural, he also wasn't in the mood to move at all. Neither was he in a mood to nap! Later in the afternoon he started drinking lots of apple juice (surprising since he usually doesn't care for it). The kitchen had sent up a clear liquid diet tray for dinner, but our nurse checked with Doc R who said Alan could go for solids if he was willing to eat them. Since he liked the chicken broth that came on his dinner tray (another surprise!), we tried some chicken noodle soup. Wow, what a hit! He ate all the noodles and chicken and a good amount of the broth. Those tiny bits of chicken were the most solid protein he's eaten in months! He also ate cheese puffs and chocolate graham crackers. Hopefully, he will keep up this appetite.

It has been a long road to get to this point, a rather significant milestone we've been working towards since the day we were told that Alan had cancer. There will be more ahead, though we won't know what for sure for a while yet. But on this occasion, we want to thank everyone who has helped, encouraged, prayed and rooted for us so far. Every single comment on the blog or Facebook, every e-mail, text message and phone call letting us know you are thinking of us and praying for Alan have been such a source of strength. Thank you!


Alan waiting for surgery


Pandas are always a good distraction


Alan in the PACU

Pre-op with Doc R

We had our pre-op appointment with Doc R today. Alan enjoyed the trip out to the Medical Center (despite not napping this afternoon) because he has been housebound by the cold snap. We have also finally turned his car seat around to face forward, so he was quite tickled by his new view. He laughed and kicked his feet every time the rain or water on the road was kicked up and hit his window.

It felt like deja vu being back in Doc R's office for a consultation. We were here back in November and ready to move ahead, before the visit with Doc W, the orthopedic surgeon, scared the living daylights out of us and we decided to get a second opinion. Things have settled down a bit in terms of our expectations and fears, and we had a few more educated questions to ask.

Doc R was very reassuring as well as being realistic. The MRI taken right after Christmas showed that the tumor has continued to shrink slightly and that there has been no visible change to the bone. Since he has not had any chemotherapy since the middle of October, this shrinkage may be due to the dead tissues being reabsorbed by the body, rather than live cancer cells dying. Pathology reports after the surgery should give us more information.

Alan was running around and very active in the spacious exam room, and Doc R was pleased to see how well he was moving. With that in mind, he anticipated a very easy recovery for Alan. He will be using the incision he made last April for Alan's biopsy to remove the tumor, lengthening it slightly for more access. He will remove all the soft tissue tumor he can without risking any of the bone, muscle, organs or nerves. This should give us a good, representative sample of the tumor for the pathologists to examine.

Really, this is a biopsy writ large. We had asked him why the other doctors (the orthopedic surgeons Doc W and and Doc L) seemed so reluctant to take this intermediate step. Certainly, putting a little guy like Alan under general anesthesia isn't something to be taken lightly (though within the larger scope of his treatment, we have come to see this as a commonplace). Doc R shared the opinion (which we have heard from friends who are in the medical field) that some surgeons are extremely conservative and will head directly to the option which will definitely remove any threat - which in Alan's case is mutilating surgery to remove all affected bone.

The oncologists (Doc P and Doc A) have case history on their side where there have been patients that have been successfully treated with chemotherapy only. Because sarcomas (both the wide category of sarcomas and specifically Infantile Fibrosarcoma) can arise in almost any part of the body, the successful treatment of it can take many forms. Certainly, that has been shown to be true in the small group of fellow IF babies we have met and talked with. Of the six other families, three had chemotherapy and surgery, one had surgery only, one has started treatment with chemotherapy so far, and we don't have any information on the last.

Doc P and Doc R have assured us that they would not hesitate to recommend any surgery they feel necessary to Alan's complete recovery, up to and including amputation. How strange to call that reassuring - but it is, because one of our fears during the process of seeking a second opinion was that we would choose an option out of emotion. Knowing that our oncologist would have no problem recommending any course of treatment necessary makes it easier to lean on his expertise.

Alan will go to the hospital on Friday for a blood draw to type and cross match, as well as do counts. Other than that, we will work in some family fun and errands this weekend before moving on to the next step of Alan's treatment.


Alan loves Strauss's "Blue Danube"! Here he is listening to it along with watching space travel visuals from Stanley Kubrik's "2001: A Space Odyssey"

Office visit 11/4 and visit with the surgeon

11/4 11:25
ANC 1076

After getting up at the crack of dawn to get back to Radiology when they opened, we got Alan set up with Doc B. Since Alan's port wasn't accessed we went for anesthesia instead of sedation. Since the CAT scan could be done very quickly, they could do this without intubating him so this was the least invasive method.

This was the first time Daddy had seen Alan going under with gas, so he was surprised how quickly Alan went from kicking and crying to sleeping. By the time we made our way up to the 2nd floor waiting room by the PACU and made a trip to the rest room, he was already done and arriving in Recovery. Since it was a very small dose of gas he was soon up and alert. Like yesterday, he was not interested in water or juice. We waited a little to be sure he was recovered from the gas and then offered him chocolate milk and a cereal bar. Since he wasn't NPO for that long, he wasn't quite as piggy this time.

Since we had a little time before our appointment with Doc R, we dropped by Starbucks for some breakfast for Mommy and Daddy. It was a beautiful morning so we enjoyed the sunshine and fresh air on the patio. We offered Alan some of the fried egg, muffin and turkey bacon and he was gobbling it up! He hasn't eaten a solid form of protein in weeks, so this was very encouraging.

We headed to Doc R's office where he showed us the MRI and CAT scan images. There is continuing shrinkage (3.3 x 2.2 cm from 3.7 x 2.3 cm in October) and it looks like the tumor is no longer in his spinal column. Doc R told us about what he wanted to accomplish with Alan's surgery - he plans to remove as much of the soft tissue tumor as possible without cutting into anything else. He was very specific that this was not a debulking procedure, which confused us since that seemed like what he was describing. Apparently, the specific medical term debulking may involve removing tissues connected to the tumor in order to remove as much of it as possible, whereas in Alan's case the goal is to retrieve as much of the tumor as possible so we can send a representative sample to the pathologists.

The doctors who will be looking at the tumor are the pathologist at our hospital, Doc H at Texas Children's Hopsital in Houston (who examined Alan's slides back in April when we were determining exacatly what he had), and Doc H-H (Doc W's pathologist who had examined Alan's slides in October). We are quite interested to hear what Doc H-H has to say, since she seems to have a slightly different opinion of how agressive this cancer is than the other pathologists.

In any case, we will be seing Doc W, the orthopedic surgeon, on Friday to go over the scans and hear his opinion. We're not ready to move ahead with the hemipelvectomy yet, but it's good to hear what everyone has to say.

After we left Doc R, Daddy had to head off to work, and Mommy and Alan went to see Doc A at the office and tell him the date we had set for surgery - in two weeks on November 17. Good counts so far, but we will probably have to have one more transfusion before the surgery because Alan's HGB level is under 10. Otherwise, Doc A was very happy with how Alan looked and we won't be back here until Monday!

A meeting with the surgeon

We went to Doc R's office today so he could have a first hand look at Alan. He also wanted to talk to us about the deliberations of the tumor board last Friday. We were hoping that the tumor could be easily removed, but besides still being heavily involved with his hip bone, there are also a lot of nerves in the area they would rather not mess with if there was a better option.

The docs obviously have access to more research on Infantile Fibrosarcoma than we do. In our limited research, most cases we read about talked primarily about surgical resection as treatment, so in our minds, that was always the goal. There was also that very primal wish to get that )#$(%&@&* thing out of our baby boy.

However, in looking at other cases of Alan's type of cancer, the docs have noted that there were many cases that were treated only with chemotherapy, or with chemotherapy then surgery that had to leave some of the tumor behind (a positive margin). In these cases, the kids were healthy and cancer-free even years later.

The bottom line is that the plan for Alan's treatment is still fluid. We will complete the chemotherapy and scan again. There may be more chemo after, or exploratory surgery where only the easily accessed bulk of the mass is removed. It's hard not knowing what and when, but we're greatful that the tumor is responding to the treatment and that Alan is feeling good, eating and playing.

This morning we had oatmeal pancakes (I picked up a mix on a shopping trip to Williams-Sonoma with a fellow cancer mommy). Alan loved them so much that he was grabbing them out of Kevin's hand! Like the fig newtons, the pancakes made a big mess, but at 240 calories a pancake, who cares! This weekend Alan started climbing down the stairs as well as going up, not to mention getting up on the bed for snacks and scrambling up onto the sofa to peek over the edge. Messy monkey - he's driving us crazy, but it's the best kind of crazy!