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