Playing in Pedi Prep & Hold
Going for a ride to the CT
Checking out the CT equipment
Recovering in the PACU
Showing posts with label Scans. Show all posts
Showing posts with label Scans. Show all posts
Wednesday, November 28, 2012
CT
We went into the Children's Hospital for Alan's CT scan today. Being NPO was not a difficulty anymore since he's on TPN now. We wanted to let Alan stay awake since he had managed to do so at MDA in September and that would mean a quicker trip to Radiology today. The anesthesiologist set him him up with Propofol just in case and we ended needing it after all. In September, Alan was fascinated with the CT machine and it held his attention long enough for them to take the scan. This time, he was too excited and curious and kept fidgeting around to get a better look. Even with the sedation, things went smoothly and after a snooze in the PACU we were on our way.
Playing in Pedi Prep & Hold
Going for a ride to the CT
Checking out the CT equipment
Recovering in the PACU
Playing in Pedi Prep & Hold
Going for a ride to the CT
Checking out the CT equipment
Recovering in the PACU
Saturday, September 1, 2012
A start to the long weekend
Alan had a possible issue with the left nephrostomy tube in the middle of the night. Alan woke up upset, and there seemed to be a significant amount of blood and epithelial cells mixed with the urine. The nurse unclogged the tube and Alan fell back asleep. The on-call docs checked on but since Alan was already back asleep and the tube was flowing again they will continue to monitor. Interventional Radiology was called but we would have to wait until morning before they would be able to send someone up. Ultimately, after discussing the matter with the pediatric team, the IR decided docs decided to wait and see since the nephrostomy tubes were back to normal.
We also had the CAT scan schedule for this morning. Since Mommy and Kevin had come back to Houston for the long weekend, Kevin went to hang out with Daddy while Mommy went with Alan down to Diagnostic Imaging. Because this was set up at the last minute we could not do any anesthesia, so the nurse gave him Ativan before we moved him downstairs. But despite the late night, he was wide awake by the time we reached the elevators. But we pressed on since a CAT scan goes a lot faster than an MRI. Alan was a little upset at first when we arrived at the scanning room, but was soon distracted by the moving gurney and by the time the CAT scan started spinning around he was thoroughly fascinated. This was the first time he's gone through a scan without sedation or anesthesia!
We promised him we would go see the puppies (the therapy dogs down in Rehabilitation) after, but we forgot it was a holiday weekend. Luckily he was just as happy to go to the Fountain and throw pennies. Once we were back upstairs we headed to the weekly Bingo game where Alan won three times! He especially liked his toy news van, since it had a big number on it. Then it was time for a nap while Shelby got another batch of Alan's Beads of Courage.
Because his BMs are getting so watery, we've cut the does Lactulose in half to 5 ml. We also started the anti-nausea medication Aloxi since he's been vomitting a bit more than we'd like. It was also time to change his Fentanyl patches.
Kevin brought Alan Lightening McQueen!
Bingo!
Sleepy!
Shelby has more Beads of Courage!
Alan is perky into the late night since he had a good nap
Letting Mommy cuddle
We also had the CAT scan schedule for this morning. Since Mommy and Kevin had come back to Houston for the long weekend, Kevin went to hang out with Daddy while Mommy went with Alan down to Diagnostic Imaging. Because this was set up at the last minute we could not do any anesthesia, so the nurse gave him Ativan before we moved him downstairs. But despite the late night, he was wide awake by the time we reached the elevators. But we pressed on since a CAT scan goes a lot faster than an MRI. Alan was a little upset at first when we arrived at the scanning room, but was soon distracted by the moving gurney and by the time the CAT scan started spinning around he was thoroughly fascinated. This was the first time he's gone through a scan without sedation or anesthesia!
We promised him we would go see the puppies (the therapy dogs down in Rehabilitation) after, but we forgot it was a holiday weekend. Luckily he was just as happy to go to the Fountain and throw pennies. Once we were back upstairs we headed to the weekly Bingo game where Alan won three times! He especially liked his toy news van, since it had a big number on it. Then it was time for a nap while Shelby got another batch of Alan's Beads of Courage.
Because his BMs are getting so watery, we've cut the does Lactulose in half to 5 ml. We also started the anti-nausea medication Aloxi since he's been vomitting a bit more than we'd like. It was also time to change his Fentanyl patches.
Kevin brought Alan Lightening McQueen!
Bingo!
Sleepy!
Shelby has more Beads of Courage!
Alan is perky into the late night since he had a good nap
Letting Mommy cuddle
Tuesday, August 14, 2012
Time for an echo
Alan had a good night with vitals at midnight, then poop. He asked for the iPad then fell asleep at 1 am, letting Miss Becky get back to bed. After she left, the doctors came on rounds. The culture on the 11th was positive - because of this ID has signed off his case with the recommendation that his port be replaced. There are a few days left in the minocycline lock treatment, but there should have been more of a response if it was going to work. The attending ordered an echocardiogram to cover all bases to seen how all the valves are working and will consult with Doc H2. Since his counts are good right now, the sooner we do the replacement the sooner he will be back in a condition for the next cycle of chemo. The silver lining is that we can put a double lumen port back in instead of the single lumen port he has had for the last three years.
We went for a really long walk today, taking some time to throw coins in the fountain. We came back in time for the echocardiogram. Alan objected at first but once the tech started the exam he was having a grand time watching all the different views. He objected when she moved past a screen he liked but we told him to hold on, that at the end she would show him his favourite view again.
Alan vomited a couple of times today. This has been the first 24 hours of 10 ml/hr feed so we paused for half an hour to give his tummy a break. It will take time for him to get used to the increased volume. But three poops today means he is digesting so we are hopeful. On the down side, we have noticed that Alan is losing his hair again, scattered on his pillow.
Tonight, Miss Denise and Mr Russ came out to visit and stay with Alan. Between them and Miss Becky we are so lucky to have such friends to take the time to come visit and help.
Sleeping sweetly for Miss Becky
Checking out the picture of his heart
Alan directing which view he wants to see
We went for a really long walk today, taking some time to throw coins in the fountain. We came back in time for the echocardiogram. Alan objected at first but once the tech started the exam he was having a grand time watching all the different views. He objected when she moved past a screen he liked but we told him to hold on, that at the end she would show him his favourite view again.
Alan vomited a couple of times today. This has been the first 24 hours of 10 ml/hr feed so we paused for half an hour to give his tummy a break. It will take time for him to get used to the increased volume. But three poops today means he is digesting so we are hopeful. On the down side, we have noticed that Alan is losing his hair again, scattered on his pillow.
Tonight, Miss Denise and Mr Russ came out to visit and stay with Alan. Between them and Miss Becky we are so lucky to have such friends to take the time to come visit and help.
Sleeping sweetly for Miss Becky
Checking out the picture of his heart
Alan directing which view he wants to see
Tuesday, July 24, 2012
Daddy's back!
Daddy is back! We've missed him this past week. Alan had a rough night and has been very irritable through out the day, so Daddy hasn't had much of a welcome. Since he has been consistently having waves of pain, he got an x-ray this afternoon to double check for constipation and gas. The white lumen was not flushing so we had to put some TPA in to get it moving again. Otherwise it was a pretty uneventful day.
Wednesday, June 27, 2012
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!
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!
Friday, June 22, 2012
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
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
Wednesday, June 20, 2012
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!
Wednesday, May 2, 2012
CT and Results
We had an earlier CT than scheduled, which meant a hurried morning then a long break before seeing Doc H2 at the Children's Clinic. First it was off to the Clinic for an IV - the contrast for the CT does better if it doesn't go through the port. Then X-Rays before the CT (they need to be taken before he gets the contrast) than off to CT.
During the administration of the propophol, an amusing event occurred. It is very fast acting when taken through an IV, but you can still recognize when it is affecting you. Alan didn't even get past a one count before he went out during his MRI yesterday. This time however, he detected that he was getting an anesthetic and started a very loud objection... which lasted about one second. He more or less said "You can't make me... zzzzzzz..." We wondered if that drug is available in an over the counter form....
During the long break after the CT we went up to the new observation deck. It was being constructed last winter during Alan's surgery and recovery. It was nice to see the finished product. Alan slept off the propofol then checked out the amazing view from 24 floors up!
Back at the Children's Clinic, Alan did some crafts with Child Life while waiting to see Doc H2. We were going in with high hopes since Alan has been off pain medication for almost a month. But Doc H2 did not have good news for us. The tumor is still growing. We were baffled - how could Alan be feeling better when the tumor had grown from 6.8x 6.8 x 7 cm in February to 8 x 8 x 7 cm? Doc H2 said that the chemo may be having a clinical effect, even if it wasn't shrinking the tumor. It may also be that the chemo is killing the tumor but there hasn't been enough time for it to shrink. Tumors also have factors which are excreted which cause irritation and inflammation. On the other hand, the chest CT was clear. It's nice to have some good news.
Doc H2 would like some data on the metabolic activity of the tumor, but MD Anderson is not set up to do a PET-CT under anesthesia. The PET-CT we had done two years ago was difficult to arrange but Doc H2 will see if he can make it happen. In the mean time, he had Alan's blood drawn so he could check LDH level, which could be an indicator of tissue breakdown. In the mean time, we may be considering the low-dose oral cytoxan and vinorelbine plan. He also has a few Phase 1 trials in mind that he thinks Alan may qualify for. Doc H2 will consult with Doc L and they will present Alan's case to the conference next Wednesday.
Doc L didn't have much to add. She will be showing Alan's new scans to an interventional radiologist she hopes she can convince to take his case. She is proposing that they open Alan up so she can protect Alan's bladder and other organs while the cyroablation takes place. She and Doc H2 will call after the conference next week.
Post CT nap
Master of All He Surveys
The view from the observation deck
Painting a Mother's Day present
Glue is fun!
During the administration of the propophol, an amusing event occurred. It is very fast acting when taken through an IV, but you can still recognize when it is affecting you. Alan didn't even get past a one count before he went out during his MRI yesterday. This time however, he detected that he was getting an anesthetic and started a very loud objection... which lasted about one second. He more or less said "You can't make me... zzzzzzz..." We wondered if that drug is available in an over the counter form....
During the long break after the CT we went up to the new observation deck. It was being constructed last winter during Alan's surgery and recovery. It was nice to see the finished product. Alan slept off the propofol then checked out the amazing view from 24 floors up!
Back at the Children's Clinic, Alan did some crafts with Child Life while waiting to see Doc H2. We were going in with high hopes since Alan has been off pain medication for almost a month. But Doc H2 did not have good news for us. The tumor is still growing. We were baffled - how could Alan be feeling better when the tumor had grown from 6.8x 6.8 x 7 cm in February to 8 x 8 x 7 cm? Doc H2 said that the chemo may be having a clinical effect, even if it wasn't shrinking the tumor. It may also be that the chemo is killing the tumor but there hasn't been enough time for it to shrink. Tumors also have factors which are excreted which cause irritation and inflammation. On the other hand, the chest CT was clear. It's nice to have some good news.
Doc H2 would like some data on the metabolic activity of the tumor, but MD Anderson is not set up to do a PET-CT under anesthesia. The PET-CT we had done two years ago was difficult to arrange but Doc H2 will see if he can make it happen. In the mean time, he had Alan's blood drawn so he could check LDH level, which could be an indicator of tissue breakdown. In the mean time, we may be considering the low-dose oral cytoxan and vinorelbine plan. He also has a few Phase 1 trials in mind that he thinks Alan may qualify for. Doc H2 will consult with Doc L and they will present Alan's case to the conference next Wednesday.
Doc L didn't have much to add. She will be showing Alan's new scans to an interventional radiologist she hopes she can convince to take his case. She is proposing that they open Alan up so she can protect Alan's bladder and other organs while the cyroablation takes place. She and Doc H2 will call after the conference next week.
Post CT nap
Master of All He Surveys
The view from the observation deck
Painting a Mother's Day present
Glue is fun!
MRI
After a late night, it was a bright and early start. First it was off to the Children's Clinic for Alan's port to be accessed, then it was up to Imaging. In MRI, Alan changed into a gown for the scan and then bundled up in some warm blankets while waiting. While we were waiting, he rummaged through the box of toys from Child Life. The MRI took an hour and a half then we came to sit with him in recovery.
He woke up in a good mood and we were soon on our way back to the RMH. Alan enjoyed exploring throughout the afternoon and had a cupcake for dinner. He was pretty pooped from the late night and long day so it was bed time at the usual time. We got a call from MD Anderson telling us that Alan's CT was pushed up so the earlier bed time was good. We will get the results when we meet with Doc H2 and Doc L after the X-Rays and CT tomorrow.
Bundled in warm blankets while waiting.
Rummaging through Child Life's offerings.
Post MRI recovery
Continuing to snooze after taking off the penguin mask.
Exploring the RMH
Taking a water break
He woke up in a good mood and we were soon on our way back to the RMH. Alan enjoyed exploring throughout the afternoon and had a cupcake for dinner. He was pretty pooped from the late night and long day so it was bed time at the usual time. We got a call from MD Anderson telling us that Alan's CT was pushed up so the earlier bed time was good. We will get the results when we meet with Doc H2 and Doc L after the X-Rays and CT tomorrow.
Bundled in warm blankets while waiting.
Rummaging through Child Life's offerings.
Post MRI recovery
Continuing to snooze after taking off the penguin mask.
Exploring the RMH
Taking a water break
Tuesday, February 21, 2012
MRI at MDA
The alphabet soup in the title just means we are in Houston for scans to see how well this new chemo regimen (Gemcitabine and Docetaxel) works on Alan's tumor. We checked into the Rotary House last night and had a relatively easy morning since we didn't need to show up at the Children's Cancer Clinic for his IV until 8:30. For the first time Alan did not wail when crossing the skybridge to the hospital.
They were running a little behind at the clinic so Alan got to smash some Play-Doh, build train tracks, and paint with his big brother Kevin while Mommy and Daddy visited with our friends the Smits. It was a stroke of good luck and great timing that this visit to MD Anderson coincided with Tristan's one year followup with the Proton Therapy Center and the Smit's trip from their home in South Africa.
The MRI went smoothly, though Alan took his own sweet time waking up from the Propofol. After an hour he was still seemingly snoozing, though he was aware enough to say "No" to juice, "No" to ice cream, but "Yes" to popsicle.
After lunch and a treat it was time to head back to the hotel for a family nap before going out to meet with the Smits. We will be back tomorrow morning to see Doc H2 and Doc L about the results of the MRI.
Alan loves smashing Play-Doh
Alan building train tracks while Tristan and his daddy Pierre watch
Kevin and Alan painting
Criss Cross Applesauce, watching Thomas the Train and waiting for the MRI
Kevin gives Alan a kiss
They were running a little behind at the clinic so Alan got to smash some Play-Doh, build train tracks, and paint with his big brother Kevin while Mommy and Daddy visited with our friends the Smits. It was a stroke of good luck and great timing that this visit to MD Anderson coincided with Tristan's one year followup with the Proton Therapy Center and the Smit's trip from their home in South Africa.
The MRI went smoothly, though Alan took his own sweet time waking up from the Propofol. After an hour he was still seemingly snoozing, though he was aware enough to say "No" to juice, "No" to ice cream, but "Yes" to popsicle.
After lunch and a treat it was time to head back to the hotel for a family nap before going out to meet with the Smits. We will be back tomorrow morning to see Doc H2 and Doc L about the results of the MRI.
Alan loves smashing Play-Doh
Alan building train tracks while Tristan and his daddy Pierre watch
Kevin and Alan painting
Criss Cross Applesauce, watching Thomas the Train and waiting for the MRI
Kevin gives Alan a kiss
Wednesday, December 28, 2011
MD Anderson testing day #1
On our way to Houston yesterday, we got a phone call, letting us know that Alan's biopsy was scheduled for Thursday. The schedule we saw was not for the biopsy but for the blood draw and IV. Later that afternoon, as we arrived in Houston, we got another call saying that a CT scan had been scheduled for Wednesday morning after the blood draw and anesthesia assessment, before our appointment with Doc H2, the pediatric oncologist at MD Anderson. We also had a quick conversation with Interventional Radiology, the department taking care of Alan's biopsy on Thursday, where we were told they prefer we stay in the area 24 hours after a procedure. So we left home expecting a quick overnight trip and it has stretched into a three-day stay.
This morning Alan had the blood draw and chest CT. The blood draw went smoothly for once as did the anesthesia assessment for tomorrow's biopsy. The CT was delayed while waiting on paperwork from Doc H2, but it was completed just in time for us to grab a quick lunch then go up to the Children's Clinic for our appointment.
Doc H2 is working on the assumption that the mass in last week's MRI is another recurrence in the tumor. Undifferentiated sarcomas in the abdomen are difficult to deal with as there is not a lot of data on the biology of them. They use treatments based on other sarcomas (particularly rhadomyosarcomas) but there's just no to way to predict how it will react. He will be requesting a detailed record of Alan's (extensive) chemo treatments from Doc P in order to formulate a new plan. Alan is up against some hard limits using Doxorubicin (one of the reasons for the chest CT) and he did not react well to the Ifosfamide and Etoposide last year. Doc H2 has an alternative in mind, one that Doc P could administer on an outpatient basis in his office.
Further plans would depend on how well the tumor responds to the new chemo regimen. Another surgical resection of course, and because this is a repeated recurrence, we will now be seriously be considering radiation therapy, despite the risks to bone growth, secondary tumors and fertility. We can only hope that he is a candidate for Proton Therapy, but that is dictated by the physics of the situation. Dr. Huh will schedule another MRI after two rounds of chemo then continue to refine the plan from there. In the meantime, we will see him and Doc L next Wednesday after they've had a chance to see the preliminary biopsy results.
Detailed results will take at least at least 7 days, but the preliminary results can at least tell us if we're dealing with malignant cells, rather than the infection that Doc L posited last week. There's no hiding from the fact that if the tumor is aggressive enough to break through while he's undergoing chemotherapy we will have quite a fight on our hands. There's still room for hope though, and we are clinging to that possibility fiercely.
Fun with Play-Doh while waiting to see Doc H2
This morning Alan had the blood draw and chest CT. The blood draw went smoothly for once as did the anesthesia assessment for tomorrow's biopsy. The CT was delayed while waiting on paperwork from Doc H2, but it was completed just in time for us to grab a quick lunch then go up to the Children's Clinic for our appointment.
Doc H2 is working on the assumption that the mass in last week's MRI is another recurrence in the tumor. Undifferentiated sarcomas in the abdomen are difficult to deal with as there is not a lot of data on the biology of them. They use treatments based on other sarcomas (particularly rhadomyosarcomas) but there's just no to way to predict how it will react. He will be requesting a detailed record of Alan's (extensive) chemo treatments from Doc P in order to formulate a new plan. Alan is up against some hard limits using Doxorubicin (one of the reasons for the chest CT) and he did not react well to the Ifosfamide and Etoposide last year. Doc H2 has an alternative in mind, one that Doc P could administer on an outpatient basis in his office.
Further plans would depend on how well the tumor responds to the new chemo regimen. Another surgical resection of course, and because this is a repeated recurrence, we will now be seriously be considering radiation therapy, despite the risks to bone growth, secondary tumors and fertility. We can only hope that he is a candidate for Proton Therapy, but that is dictated by the physics of the situation. Dr. Huh will schedule another MRI after two rounds of chemo then continue to refine the plan from there. In the meantime, we will see him and Doc L next Wednesday after they've had a chance to see the preliminary biopsy results.
Detailed results will take at least at least 7 days, but the preliminary results can at least tell us if we're dealing with malignant cells, rather than the infection that Doc L posited last week. There's no hiding from the fact that if the tumor is aggressive enough to break through while he's undergoing chemotherapy we will have quite a fight on our hands. There's still room for hope though, and we are clinging to that possibility fiercely.
Fun with Play-Doh while waiting to see Doc H2
Wednesday, October 26, 2011
Scans at MD Anderson
It was time for Alan's quarterly scans at MD Anderson today. We headed out to Houston the night before for an overnight stay at the Rotary House so we could be at the hospital bright and early for the scans.
The X-Rays went smoothly, but there was some frustration going back and forth on where we had to go to access Alan's port. To compound matters, we weren't getting any blood return, so after being accessed at Infusion Therapy and having TPA administered, we had to sit around with the TPA for an hour while playing at Children's Clinic. After an hour, we headed back to Infusion Therapy to have the port flushed (the TPA did the job, yay!) and then *back* to the Children's Clinic to have the blood drawn. If that sounds annoying, then imagine actually running around like that.
Needless to say our MRI was delayed, but we eventually made it. Alan is a big boy now, so he waited sitting in the big chair. The MRI went smoothly and we were back with Alan in an hour. Alan slept off the Propyphol for another hour and then woke up for some apple juice.
After he recovered, we went to ICU to take cookies to the staff and visit everyone who had taken such good care of Alan last December. Two of the nurses who had watched Alan were there and loved seeing how much he had grown and his full head of hair. Alan was still so woozy from the anesthesia, so he was playing with Toca Doctor while they were ooh'ing and ahh'ing over him. He stretched out and put his hands behind his head, which had everyone smiling. They all remembered his file picture and how he used to do that all the time!
While we were waiting, we got some good news from one of Alan's fellow warriors. Tristan, our little friend from South Africa, had scans the day before Alan. The tumors in his brain have showed no growth, and in fact have shrunk a little. Considering Tristan's parents were told this time last year that he was a terminal case, this is more than wonderful news, it's a miracle!
Now it's off to see Doc L for our surgical follow up.
Alan drawing while waiting for the MRI
Big boy chair!
Off with Daddy to the MRI!
Post MRI with a penguin mask.
Mmmmm, juice!
Visiting ICU
The X-Rays went smoothly, but there was some frustration going back and forth on where we had to go to access Alan's port. To compound matters, we weren't getting any blood return, so after being accessed at Infusion Therapy and having TPA administered, we had to sit around with the TPA for an hour while playing at Children's Clinic. After an hour, we headed back to Infusion Therapy to have the port flushed (the TPA did the job, yay!) and then *back* to the Children's Clinic to have the blood drawn. If that sounds annoying, then imagine actually running around like that.
Needless to say our MRI was delayed, but we eventually made it. Alan is a big boy now, so he waited sitting in the big chair. The MRI went smoothly and we were back with Alan in an hour. Alan slept off the Propyphol for another hour and then woke up for some apple juice.
After he recovered, we went to ICU to take cookies to the staff and visit everyone who had taken such good care of Alan last December. Two of the nurses who had watched Alan were there and loved seeing how much he had grown and his full head of hair. Alan was still so woozy from the anesthesia, so he was playing with Toca Doctor while they were ooh'ing and ahh'ing over him. He stretched out and put his hands behind his head, which had everyone smiling. They all remembered his file picture and how he used to do that all the time!
While we were waiting, we got some good news from one of Alan's fellow warriors. Tristan, our little friend from South Africa, had scans the day before Alan. The tumors in his brain have showed no growth, and in fact have shrunk a little. Considering Tristan's parents were told this time last year that he was a terminal case, this is more than wonderful news, it's a miracle!
Now it's off to see Doc L for our surgical follow up.
Alan drawing while waiting for the MRI
Big boy chair!
Off with Daddy to the MRI!
Post MRI with a penguin mask.
Mmmmm, juice!
Visiting ICU
Friday, September 30, 2011
Ultrasound and tests
Today, Alan was scheduled for an abdominal ultrasound and a kidney function test at the hospital.
The ultrasound went fairly quickly. Alan enjoyed lying down in the quiet, darkened room while watching the images on the ultrasound machine. We think he actually looks forward to ultrasounds now, because he is so fascinated by the images and sounds of his own heart and lungs.
The kidney function test he hasn't been enjoying nearly as much though. He already wasn't happy when we first got to the Radiology Pedi Prep & Hold room... he recognized it as the not fun place. Things got more complicated when we couldn't get any blood return from his port. We tried a couple of needles with no results. Eventually, we decided to go with an IV so we wouldn't be delayed anymore... because the kidney test takes some time.
The kidney test is very simple. Basically, after drawing a little bit of blood for a baseline measurement, Alan is injected with a small amount of tracer fluid. This fluid is processed by the kidneys and decreases in the blood over time. Two blood draws are done to measure the amount of decrease. The problem is that the draw intervals are one and three hours after the initial injection... so there is a lot of 'not much to do' time. At least he has no restrictions once the test starts... he can eat and drink to his heart's content. We decided to hang out in the children's ER area at the children's play section... he had fun with several toys. But he was happy to leave the hospital once we were done!
The ultrasound went fairly quickly. Alan enjoyed lying down in the quiet, darkened room while watching the images on the ultrasound machine. We think he actually looks forward to ultrasounds now, because he is so fascinated by the images and sounds of his own heart and lungs.
The kidney function test he hasn't been enjoying nearly as much though. He already wasn't happy when we first got to the Radiology Pedi Prep & Hold room... he recognized it as the not fun place. Things got more complicated when we couldn't get any blood return from his port. We tried a couple of needles with no results. Eventually, we decided to go with an IV so we wouldn't be delayed anymore... because the kidney test takes some time.
The kidney test is very simple. Basically, after drawing a little bit of blood for a baseline measurement, Alan is injected with a small amount of tracer fluid. This fluid is processed by the kidneys and decreases in the blood over time. Two blood draws are done to measure the amount of decrease. The problem is that the draw intervals are one and three hours after the initial injection... so there is a lot of 'not much to do' time. At least he has no restrictions once the test starts... he can eat and drink to his heart's content. We decided to hang out in the children's ER area at the children's play section... he had fun with several toys. But he was happy to leave the hospital once we were done!
Wednesday, November 18, 2009
Alan's latest scan
We are back from the PET-CT and Alan is napping. What a relief! In order for the scan to work, we had to cut off his dairy and carbs at noon yesterday - tough since virtually 99% of his diet is dairy and carbs. We were not looking forward this - all Alan would be allowed to eat was green vegetables, meat and drink water. He had no interest in the meat, but at least he was gobbling down broccoli. We deployed one of his birthday presents - an inflatable water play center - so he could splash in the water as a treat.
This morning he was so tired with no energy. He usually runs around in the morning like a little herd of elephants, but today he just wanted to lie down. He was restricted to water only at bedtime, and even that was cut off by 8 am this morning. While we were in the waiting room, he was trying to get to the bag in the stroller, obviously looking for something to eat or drink. He was only partially satisfied with his toys.
Unfortunately, only the doctor's office can access his port, so they had to get an IV line the old fashioned way. That did NOT make him happy. It took a couple of tries before we got a good line in. Then it was back into Daddy's lap while the radiology tech injected the sugar solution with radioactive isotopes. We had to wait an hour for the solution to work through Alan's system, and the nurse taking care of the sedation told us to be sure that Alan did not fall asleep. If he was tired and sleep-deprived she would only need a minimal amount of sedation to keep him still through the scan. So on top of being hungry and thirsty, Alan was also tired and mad because we wouldn't let him fall back asleep.
It all went well though. The nurse only needed the minimum amount for sedation and he stayed still throughout the scan. After some time sleeping in recovery, Alan was woken up and drank almost a whole cup of chocolate milk in one continuous gulp. At last! We were soon heading home with a copy of the scans on disc. Alan drank half-way through a second cup of chocolate milk, had a few animal crackers then fell asleep again on the way home. It's been a rough couple of days for Alan, but scans went smoothly.
The radiologist should be sending the report to Doc P and Doc W sometime today. In the meantime, our little man is having a well-deserved nap. Hopefully Doc P has been able to talk to Doc L today and will have news on that front too. Now we just have to wait and pray.
This morning he was so tired with no energy. He usually runs around in the morning like a little herd of elephants, but today he just wanted to lie down. He was restricted to water only at bedtime, and even that was cut off by 8 am this morning. While we were in the waiting room, he was trying to get to the bag in the stroller, obviously looking for something to eat or drink. He was only partially satisfied with his toys.
Unfortunately, only the doctor's office can access his port, so they had to get an IV line the old fashioned way. That did NOT make him happy. It took a couple of tries before we got a good line in. Then it was back into Daddy's lap while the radiology tech injected the sugar solution with radioactive isotopes. We had to wait an hour for the solution to work through Alan's system, and the nurse taking care of the sedation told us to be sure that Alan did not fall asleep. If he was tired and sleep-deprived she would only need a minimal amount of sedation to keep him still through the scan. So on top of being hungry and thirsty, Alan was also tired and mad because we wouldn't let him fall back asleep.
It all went well though. The nurse only needed the minimum amount for sedation and he stayed still throughout the scan. After some time sleeping in recovery, Alan was woken up and drank almost a whole cup of chocolate milk in one continuous gulp. At last! We were soon heading home with a copy of the scans on disc. Alan drank half-way through a second cup of chocolate milk, had a few animal crackers then fell asleep again on the way home. It's been a rough couple of days for Alan, but scans went smoothly.
The radiologist should be sending the report to Doc P and Doc W sometime today. In the meantime, our little man is having a well-deserved nap. Hopefully Doc P has been able to talk to Doc L today and will have news on that front too. Now we just have to wait and pray.
Friday, August 28, 2009
Day Two and CAT scan
We are on Day Two of chemo, which was interrupted for a couple of hours to do Alan's CAT scan and echocardiogram. The nurses at Pedi Prep & Hold were charmed by Alan smiling and bouncing to the rhythm of the pulse/ox monitor. These ladies remembered him, and I was thinking "We haven't been down here that much!" but of course they were the first ones to see him that first day in the hospital when we got the news about the tumor. He got an ultrasound, x-ray and a CAT scan that afternoon and they remember when a little baby like Alan gets such a serious and heartbreaking (in their words) diagnosis.
The echo tech did his exam while Alan was in Recovery sleeping off the anesthesia. It was much easier this time! Pretty soon we were back in the room and ready to snack. Alan put away more Cheerios but refused any more yoghurt, despite putting away almost an entire cup yesterday. This really disappointed Mommy because she was hoping he would eat the Benecalorie the dietitian suggested that was mixed in. We'll tried again later with apple sauce with still no luck. However, he did eat some fish and tater tots that came on the lunch tray. Yay!! No luck for dinner except for the dried apple bits (which one nurse thought looked like dried tofu!).
Doc A came after dinner with the good news that the CAT scan showed more shrinking in the tumor and growth in the bone. Less tumor, more bone yay! We won't get a chance to see the pictures until tomorrow, but at least Daddy will be here then to see them too.
One of the guys in Radiology made a glove balloon man for Alan
The echo tech did his exam while Alan was in Recovery sleeping off the anesthesia. It was much easier this time! Pretty soon we were back in the room and ready to snack. Alan put away more Cheerios but refused any more yoghurt, despite putting away almost an entire cup yesterday. This really disappointed Mommy because she was hoping he would eat the Benecalorie the dietitian suggested that was mixed in. We'll tried again later with apple sauce with still no luck. However, he did eat some fish and tater tots that came on the lunch tray. Yay!! No luck for dinner except for the dried apple bits (which one nurse thought looked like dried tofu!).
Doc A came after dinner with the good news that the CAT scan showed more shrinking in the tumor and growth in the bone. Less tumor, more bone yay! We won't get a chance to see the pictures until tomorrow, but at least Daddy will be here then to see them too.
One of the guys in Radiology made a glove balloon man for Alan
Friday, July 24, 2009
Another CAT scan
07/24 0815We were woken up bright and early this morning to go down to Radiology for another CAT scan. We weren't sure last night when we would be taken down, but we were hoping it would be early so that Alan could start eating again. Well, the anesthesiologist came up himself to get us. This was the first time we had met Doc K - all the other times we had Doc B and we were beginning to think she was the only pediatric anesthesiologist in the hospital! Well, things were running slow down in Radiology this morning, and Doc K was getting impatient to get working, so he came up to get us himself. Quite the perk to be transported by a doctor!
ANC 2500
The scan went quickly - Mommy barely had time to go back to the room to change out of her pjs and return Alan's wet diaper to the 4th floor nurses before going to the post-anesthesia recovery room (once again, Mommy was roaming the halls of the hospital with a diaper in a biohazard bag - Doc K was in such a rush to get back to Radiology we didn't time to change Alan before heading down). We were back upstairs in no time. So quickly, in fact, that Alan didn't get much sleep after waking up from the procedure (when you're inpatient, they move you out of recovery quickly, and Alan woke up while being moved back into his room). We are still waiting to go over the results with the doc, but the nurse hinted that they were very good!
Alan spent the rest of the morning playing on the mat. The Volunteer Grandma brought him more toys until he was surrounded!
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