Radiation Treatment #4

Today was Alan's fourth radiation treatment. It was quiet down there since it was the weekend. After we were done we headed up to Radiology for another x-ray. Since we were already on the move and Alan was nice and relaxed from the anesthesia it was easier to have the x-ray taken in Radiology than have a portable x-ray machine sent up to his room.

We had a lots of visitors today. Krysia (from San Antonio by way of Frisco), Denise and Sara came from Frisco came to see Alan with lots of great home-made cards and gifts.

Then in the afternoon Becky brought big brother Kevin from San Antonio to join us. Alan was quite excited about the box of popcorn that Kevin had picked up in the lobby. That's the first sign of interest he's had in solid food for over a week!

Alan had a good afternoon watching Kung Fu Panda 2 and playing Fruit Ninja. Although he continues to push the button on the PCA for morphine, we have been easing back on the nursing boluses. He's been in a good mood.

Doc H2 came by later in the afternoon with some thoughts. He is considering some high-dose Ifosfomide for a post radiation treatment.


Ready for treatment #4


Aunties visiting


Big brother Kevin is here!

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.

Aid and comfort

Since Alan's treatment has kicked into high gear, taking us on another roller coaster ride, we have had so many friends, aquaintances and strangers come through to support us. Our friends went from taking care of Kevin for a two-night trip to tag-teaming with another set of friends to keep Kevin for over a week. Then we had a half dozen friends offering to drive him out to us in Houston.

People have been sending gift cards and gifts on PayPal, writing notes and sharing their prayers in Alan's Angels, on Facebook, in e-mail, text and calls and we appreciate the support more than we can say. We feel bad because we haven't been able to thank everyone yet who had come through to support us when Alan's tumor first resurfaced at Christmas. If we haven't been able to send our thanks to you yet please know that it is appreciated and not forgotten.

Child Life came with a few things to make Alan a little more comfortable. She had cute pillow cases from an organization called ConKerr Cancer: A case for smiles. She had an alphabet pillow case for Alan and a Cars pillow case for Kevin. She also came back later because she found a Sponge Bob blanket from the Houston chapter of Project Linus. With Alan alternating between non-stop Sponge Bob episodes and Kung Fu Panda 2, she knew that it would be a great hit.

This is also a good time to note that our friend Trevor completed the two-day Ride to Conquer Cancer earlier this month, riding in Alan's honor and directing all his fundraising towards pediatric cancer research. He rode from Vancouver to Seattle on the more difficult Challenge route with the Alan's Angel bracelet on his handle bar for inspiration and is already signed up for next year! Thank you Trevor!

Our friend Jessica at Abbey Adams Photography is doing mini-photo shoots as a fundraiser for us this weekend. This was all her idea and something she whipped in the last week. Jess's family store, Habeebs's Jewelers in Corpus Christi, is also donating all watch battery sales with a sign that reads "Little Alan needs TIME!!". 

We are so incredibly touched by all the support.  We will never be able to say "Thank you" enough!

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!

Radiation Simulation

We finally started the steps for radiation therapy today!  But not without some hiccups...

Alan had been on a cycle of a morphine dose about every 2 hours... sometimes having pain symptoms just before the 2 hours was up, sometimes being able to carry on significantly longer than that.  However, at his 4AM dose, he didn't fall back asleep for almost an hour... unlike the other times where it would 'kick in' in about 10 minutes.  He slept until his next dose time at 6AM, where this time, it didn't seem to have much of an effect at all.  This would not bode well for most of the day.

We finally got down to Radiation Oncology for the simulation today.  After a brief discussion with the anesthesiologist who explained he would be intubating Alan to protect the airway (he's at a higher risk of aspirating into his lungs because of the abdominal blockages), he went to the CT room. During the simulation they determined the exact parameters of the tumor and radiation field and how he will be cradled for the actual treatment. This went pretty smoothly and fairly quickly... he was in by 8 AM and we were up to the PACU at 9:15, then back in his room at 10:30. Alan was so cute, he was getting attention like a rock star while being pushed through the hallways of MD Anderson.

Unfortunately, even with doubling the dose of morphine, his pain did not seem to decrease much at all, with the result that he had to suffer most of the day.  Various doctors and teams came in, with a few things to try here and there that didn't seem to give him much relief.  Discussion revolved around what is causing the pain, including a colon blockage (with trying to have a bowel movement), urinary tract issues (not too likely at this point), the tumor pressing on the major nerves, or some combination of these factors. Of course, dealing with the pain meant Alan's blood pressure stayed elevated through the day.  The good thing is that he drank some water and 2/3 cup of juice (both of which he asked for on his own) so at least he isn't nauseated to the point of not wanting to take anything by mouth.

We had a lot of different doctors coming through Alan's room today. There was a lot of discussion and decisions to make regarding his pain management and treatment.

1) While he is under for the radiation treatment tomorrow, the IV team will install a PICC line near the elbow joint.  The line will run up his arm to a vein to near his heart, similar to the position of his port. Since they are putting in a PICC line with a double lumen, this will allow for more more flexibility in administering medications. The greater access means they can give him morphine through a PCA. We're going that getting  a steady dose versus getting an IV push every two hours means we can avoid the ups and downs he gets right now.

2) After some discussion, Doc H3 decided to leave in the foley catheter because urinary blockage could happen in two narrow places.  The first is the canals from the kidneys to the bladder, which is being taken care of by the nephrostomy tubes inserted into his kidneys.  The second is from the bladder to the 'exit', which means if the canals open up as the tumor shrinks and the blockage is there, the bladder would start getting stretched again if the foley catheter is out. There's very little risk to keeping it so the foley stays in as a safety measure.

3) We decided to restart the suction for his NG tube, in the hopes that if there is a colon blockage, that it will help relieve it. 

Near the end of the day, the medical team decided to try IV Tylenol along with the morphine.  The reasoning was that the morphine goes to the brain to try to get you to not care about the nerve pain, whereas the Tylenol goes to the nerve endings to try to deaden the pain at the source. We could attack the pain in two different places. As of 9:45 PM, it appears to work pretty well.  He's been either sleeping, quietly watching TV, or playing on the iPad for the last 3+ hours.  Alan playing on the iPad is very encouraging, as that's the most activity (other than holding Sponge Bob stickers) he's been wanting to do in the last several days.


Playing Fruit Ninja while cuddling with Mommy

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!

MRI and Radiation Consultation

We arrived in Houston last night for today's scans and a consultation with Doc M, the radiation oncologist. Alan had a pretty fitful night's sleep so we made it to the clinic to have his port accessed bright and early. He took his own sweet time waking up from the MRI, so we grabbed some lunch at the cafeteria and headed to the Radiation Treatment Center.

We were early but decided to go straight there since we had never been there before and just wait. We were soon hustled in and the nurse went through Alan's history and medications quite speedily, saying they were glad we had arrived early so Doc M could see us as soon as possible. The results of this morning's MRI were pretty scary. It seems that the cryoablation did not slow the tumor down - in fact, it was rather like kicking the hornet's nest. The tumor is heading back to the nerve root (comparing the MRI in May and today's, the nerve root went from looking round to looking oval from the pressure of the tumor). There was pressure on the bladder and kidneys as well as the colon. As soon as she saw those scans, she called Doc H2 to confer over the results and they decided that she would meet us, give us a quick update on the results and a precis of her plan and then send us up to Doc H2 who would admit Alan to the hospital.

The plan is to decompress Alan's abdomen over the weekend and get some pain management so he can be comfortable. That will involve putting in an NG tube so we can get the air out of his stomach, a foley cather to relieve the pressure in his bladder, going to Interventional Radiology to put tubes in his kidneys so the kidneys can be drained, and finally X-rays and another CT for surgery so they can assess the need for a diversion from his upper gastric pathway past the tumor.

On Monday, Doc M will do a map and simulation of Alan's abdomen and they will make a cradle that will hold him in place for the radiation treatments. She plans to start treatment on Tuesday, 10-15 treatments (Monday to Friday if he gets well enough to be discharged from the hospital and continues radiation as an outpatient, through the weekends if he is still in the hospital). She plans to used standard conformal radiation, using a low number of fractions but a higher dose of radiation per fraction. Because of the high dose, it will probably be only 10 treatments since she will be taking the treatment to the limit of the surrounding tissue's tolerance. But the tumor is unbelievably aggressive, so she wants to hit back hard with a higher dose per treatment.

The goal of the radiation is to stop or slow the progress of the tumor rather than shrink it, because it is so large. There is a radiation oncologist on call over the weekend if the situation becomes so emergent that they need to start the treatment right away. Obviously the preference is to do it methodically and logically with the full team available and the advantage of mapping and simulating the treatment on Monday.

After our whirlwind meet-and-greet with Doc M and her team, we went upstairs to see Doc H2. He went into more details of the plans for Alan this weekend and we talked about the next step after radiation. To be blunt, there isn't one yet. We have pretty much run out of options for cytotoxic chemotherapies. They just aren't developped and targeted for little guys like Alan. He is considering a few options: 1. He still needs to test Alan's tumor to see if he qualifies for the trial of the amino acid therapy, 2. Gleevec targets proteins and is safe in kids, but it is unclear how effective it is on unclassified sarcomas, and 3. mTor inhibitors are a possibility but Doc H2 will need to figure our a safe pediatric formulation.

While waiting for our room to be prepared, Doc H2's nurse gave Alan two doses of morphine for the pain. The nurses on the floor will continue to administer morphine while we wait for a consultation with the pain management team. Hopefully, the other measures will go a long way to providing him relief too.

Anyway, the the upshot is we went from a 2-night trip to a one-month stay. Doc H2 said that the reaction of Alan's tumor to cryoablation was very unusual. We love you Alan, and know you are infinitely precious and special. We just wish your cancer wasn't quite so special.


Waiting for the MRI. Alan was quite insistent at the Diagnostic Imaging waiting room that he wanted to go to the MRI room. Once there, he asked for a blankie.


Sleeping peacefully post MRI


Taking vitals while being admitted

Office visit and CT scan

Warning: There is a lot of poopy talk in today's post, so please skip if you are squeamish.

Alan has been dealing with a lot of pain over the last two weeks. None of the painkillers (Gabapenten, Hydrocodone, Fentanyl) have seemed to help much, and he has not been having good bowel movements. We've been hearing a lot of gurgling coming from his tummy and he seems to relax a bit whenever that happens, when he passes gas, or when he has a bowel movement. We figured it was constipation, something we've dealt with countless times before.

By Monday night, his pain and upset had come to the point where Harold was ready to take him to the ER, but we called Doc P for the next step. He suggested an enema (adult strength, not pediatric) and wanted to see Alan on Wednesday. The enema gave Alan a lot of relief right away (he was practically falling asleep on the potty) and he was able to sleep through the night. But the pain was back by Tuesday afternoon.

We took him to Doc P this morning. They took a blood draw and his counts are great but that was not the concern today. Doc P did a physical exam and heard a hollow sound in his tummy. Between that and the very loud gurgling, he was concerned there was a blockage so he sent us straight to the Children's Hospital for a CT.

The only way we could the CT done today was if Alan was not sedated.  You can imagine how pleased he was to be on the CT table.  However, after some tactical wrapping, some counting to 100, and some distraction with the iPad, we were able to get the scans.  Yes, two CT scans were needed because they had to measure the difference in the contrast level betweem the first scan and the second scan 10 minutes later.

We spoke to Doc P about the results around bed time. Though the radiologist didn't note a blockage, Doc P didn't concur. What he saw in the scans corroborated what he found in the physical exam earlier today - the tumor is pushing on Alan's colon. It's also pushing his bladder to one side which is probably causing him some pain. His right kidney is extremely swollen though his creatinine levels are good.

Though we know what's causing his pain we're not sure what can be done about it. Doc P his putting his thinking cap on and we've sent an e-mail to Doc H2. We have a CD of the scan to take with us to MDA tomorrow (for Alan's MRI and consultation with the radiation oncologist). Since Monday's enema worked and was able to give Alan some relief for a while, Doc P told us to go ahead and give him another one. Good thing we got a two-pack on Monday!

Back on track

Checking our schedule at MD Anderson online yesterday we found out that Alan's MRI had been moved up to the end of next week, Friday June 22. It's half a week earlier than the previously scheduled MRI but falls on dates that Harold is supposed to work. While Judy can handle the MRI on her own, they both want to be in on the consultation as there are sure to be big decisions to be made. Luckily, today we got the update that the consultation with the radiation oncologist will be the same afternoon, cutting down the number of trips he will have to drop.

Alan continues to be very irritable, now with a rash and gurgling stomach. Looking up the side effects it seems the itching and stomach upset could be caused by the steroids. We'll drop them for now since they don't seem to be making him feel better and he's fighting when we administer it.

Frustration....

We were supposed to go to Houston today for a consultation with the Radiation Oncologist. First thing this morning though, we got a call from her office saying that she wanted scans before the consultation and cancelling our appointment. Our frustration knows no limits right now. We were looking forward to having a plan in place, being able to make arrangements for Kevin's therapy as well as knowing what the next step in Alan's treatment would be. Alan has had increasing irritability over the weekend, which may be constipation, or the tumor, or a late side effect of the cryoablation. Doc H2 prescribed some Dexamethasone to reduce inflammation. Hopefully this will help him be more comfortable.

Wanda, Doc H2's nurse called us in the afternoon letting us know they were doing everything they could to get an MRI for Alan as soon as possible. Since he needs sedation, it is trickier to schedule one for him. The latest we will have to wait would be June 27, the MRI that Doc L had originally booked as a follow-up to the cryoablation procedure. Hopefully we can get back on track quickly.

Home again!

Alan had a restless night and when he woke up, the rash on his face from the adhesive holding the intubation tube had gotten much worse. He was upset, touching the rash on his face then touching Mommy's face, asking for "Help!". We called the children's floor we had just discharged from yesterday for some advice and spoke to one of the pediatricians. Since it sounded like a simple topical skin reaction he believed it would just take time to heal. There is a lot of irritation so we need to watch Alan scratching it. The doctor recommended cortisone and bactrim ointment to protect his skin until it heals.

After packing up and heading out we stopped by IKEA on our way home to meet Miss Aimee, Gavin and Gwendolyn for some lunch and shopping. Alan was very excited when we pulled into the parking lot - he loves riding the escalator at IKEA and did so half a dozen times before we proceeded to shop. Alan was having a great time and by the end of our trip his appetite back enough to eat frozen yoghurt! Then on to home!



Watching Gavin's game in the IKEA Marketplace.