Consultation with the pain doc

We met this morning with Doc E, an anesthesiologist who works in pain management. He went over some of the options for managing Alan's increasing nerve pain. If we had an epidural, that would add another line into him, along with another dressing that would need to be changed regularly and another pump. Because this pump would be handling a local anesthetic as well as painkiller, Doc E has had difficulty finding home health care companies that are willing to manage it.

The second option is a neurolytic lumbar spinal - basically a lumbar puncture during which they would inject alcohol into his spine to "burn" the nerve. The advantage of this option would be that there would be no additional lines or equipment. It may wear off over time but could be repeated as necessary. The disadvantage is that it is not done in children often so there is very little data on dosing levels for the alcohol. Doc E is very confident in his ability to do the procedure, and frankly there is no one else in town that is even remotely qualified (or willing) to do it. He freely admitted that if we decide to go with this option he would be consulting colleagues at the Children's Hospital in Tennessee and doing further research. We also put him in contact with Doc H2 so he could consult with the pain docs at MD Anderson who had suggested a similar procedure this summer.

The decision was fairly easy to make. The spinal would leave Alan less encumbered and if it worked would allow us to enjoy Christmas and maybe make the New Year's Eve fireworks - goals that Doc E said were very attainable. We considered the downsides of the treatment - loss of mobility, bowel and bladder control were things we are already dealing with. To us, the biggest downside is if it doesn't work since Doc E said he would want to be conservative (because dosing information for patients as small as Alan is not well researched).

Doc E's office will start working on scheduling the procedure. Hopefully it will be quick since Alan's pain is getting more and more difficult to manage.

Office visit 11/20

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11/20 11:50

Alan had a low hemoglobin level, so will come back to the Medical Center tomorrow to get a transfusion at the Children's Cancer Clinic.

Office visit 11/15

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11/15 11:30

More than two months since the CT results and coming home, we have settled into a routine and we have indulged in a little denial. Today though, we had a frank conversation with the Doc, asking for a reality check. Realistically, Alan's tumor is progressing. We are starting to see it in the small of his back. We got a new prescription of Lactulose to keep him comfortable, but we really need to prepare future arrangements.


Napping in Mommy's lap

Office 11/8 and Alan's birthday

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11/08 11:40

After celebrating Alan's 5th birthday, we were back at the office. The counts look good and we finally have a handle on the TPN mix and pain management, so we are going down to one visit a week.

Since it has been two months since our last CT at MD Anderson, the Doc talked about getting a CT at the end of the month so we could have an idea of how the tumor is progressing.


Alan snoozing as his 5th birthday dawns


Waiting for his party


Enjoying his Chuck E. Cheese birthday party with a lap full of tickets


Alan and Chuck E.


Happy Birthday Alan!


Alan is proud of his Birthday Star medallion


We are so grateful to be able to celebrate Alan's birthday!


Post-birthday party

Office visit 11/6

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11/06 11:55

Napping with Daddy

Office visit 11/1

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11/01 11:50

Alan's pain was well controlled over the weekend and he had lots of fun during our staycation at the JW Marriott! The weather warmed up enough by the end of the weekend to allow us to take him to the pool for a little bit of splashing around. We used extra Tegaderm to protect his nephrostomy and g-tube dressings and kept him in the shallow water. Alan loved the water and kept trying to dodge us to get deeper into the water.

After a fun weekend, we came back to the office for a check up. No changes!


We couldn't get a picture of both boys looking at the camera because they were fascinated with the gigantic pumpkin!


Alan loved romping in the hotel bed


Pillows!


Playing Connect 4 at the Range Riders


Kevin gives Alan a kiss


Splashing in the pool


Alan tries to get past Mommy to get into the deeper water

Office visit 10/30

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10/30 11:55

Alan's pain is increasing, so the Doc raised both the level of the morphine bolus and rate of the Fentanyl patch up.


Reading with Pastor Barz


Alan stringing his favourite of the Beads of Courage

Office visit 10/25

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10/25 11:02

A quick easy trip to the doctor, so there was time to go to Chuck E. Cheese after!

Office visit 10/24

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10/24 13:50

Alan's chemistry levels are good, so there are no more changes to the TPN mix. After the office visit we headed off to Barnes & Noble so Alan could play at the train table.


Trains!

Office visit 10/18

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10/18 14:05

The docs continue to adjust the mix of Alan's TPN after looking at the magnesium levels in his lab results.




Having fun in the game room

Office visit 10/16 and Uncle Peter

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10/16 12:20

It was a fairly comfortable weekend, with a visit from Uncle Peter!  Alan's counts were all good. They'll send the chem test to the lab and we'll see if any adjustments need to made to his TPN. We'll be back for another check up on Thursday.



Uncle Peter with the boys


Showing Uncle Peter the water tables at Morgan's Wonderland

Office visit 10/11

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10/11 12:15

Alan has had only one dose of Levsin, the anti-spasmodic medication that Doc B prescribed on Tuesday. We had asked for IV medications as much as possible, so as not to risk triggering a vomiting incident - Levsin is usually given orally, so it took Coram a little more time to order the IV formulation and get it to us. So far so good though. Alan has been much more comfortable.

After a very straight forward visit, it was time to go to Chuck E. Cheese again. Aunties Karen and Krysia met us there, where they presented us with the Alan's Angels quilt that Karen had been working on for ages. It's full of hand and finger prints from so many of the people that love and support Alan. Thank you!!!


Alan indulges his new found love of cable news networks


Trading in tickets for a new Chuck E bubble blower


The Alan's Angels quilt

Long weekend and Office visit 10/9

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10/09 11:50

We've been dealing with the sudden onset vomiting over the long weekend. We were concerned that it indicates blockage of his intestines again, this time irrecoverable. Unlike earlier bouts of vomiting, these have come on extremely suddenly without warning, like a switch being thrown. Before, we would have some warning signs such as nausea or indication of upset from Alan. Sometimes he would hold his hand over his mouth or hold his stomach and cry "My tummy!". Once the bouts are over, though, he is back in a good mood just as quickly, even asking to go to Chuck E. Cheese when not five minutes ago he was vomiting.

Things were tough this weekend. We were literally waiting until the last minute to decide whether or not to take Alan to a birthday party for two of his little classmates at Morgan's Wonderland. In between bouts of vomiting Alan kept saying he wanted to go out. We finally realized that he could either fight off these bouts of vomiting stuck at home, or while he was out having fun. So we packed extra towels and wipes and headed out.

Doc B thinks that spasms from the intestines or ureter are breaking through the basal rate of pain control provided by the Fentanyl patch, and the pain is triggering the vomiting. Since he is otherwise very comfortable outside of these acute pain episodes, we will try an anti-spasmodic medication rather than increasing the Fentanyl. We'll be back on Thursday for another check up and counts.


Off to a birthday party!


Alan with the birthday girls


Mmmm cake and ice cream!


Beep beep! Driving on the playground


Arranging his tickets for the Ticket Muncher


Playing Peek A Boo while waiting for rockets to launch

Office visit 10/5

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10/05 11:05

It was just a quick check up today for counts, which look good!  Alan has gotten over the gummy bear OD so we were soon off to SeaWorld!

Alan enjoyed going on the moving sidewalk to watch the penguins and hanging around to watch the Steel Eel roller coaster zoom past for as long as Mommy and Daddy could stand the heat.


Off to see the penguins and ride on the moving sidewalk


Watching the puffins

Office visit 10/2

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10/02 12:45

Alan's numbers look good. Doc B wants the Vancomycin to continue for a total of 14 days, so we have a few more days on the antibiotic.  Alan has had some pain over the weekend - we are not sure if it's due to a gummy bear OD (he had about a dozen on Saturday afternoon) or the restart of the chemo? After going over the symptoms with Doc B, we decided the gummy bears were the culprit, so we will continue the chemo. Because of the vomitting, we asked for Aloxi by IV rather than oral Zofran since giving him oral meds can set him off.

After the office, it was off to Chuck E Cheese again!


Alan has discovered that the cable news networks have lots of numbers!


Smiling with Clara and Aurora


Winning tickets is serious business!


Feeding the Ticket Muncher


Ooooh look at this big number!

Office visit 9/28

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09/28 12:40

It was a short visit for a change, after our long day on Wednesday. Alan's counts looked great and his nurses were excited about seeing him on TV yesterday. Since things were looking good, Doc B has given us the go-ahead to start Alan's chemotherapy again.

Office visit 9/26

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09/26 10:00

We started early since we knew we might have to have a blood transfusion today. Sure enough, Alan's hemoglobin count was down to 8.6. We headed over to the Children's Cancer Clinic after our visit with Doc P. After the vitals it was off to choose a spot for the next several hours. Alan was not interested in on of the kiddie recliners. Instead we went to the play room, where he found some new toys and we found a number-themed Sesame Street dvd to play. The transfusion went smoothly, so we were on our way home for dinner in no time!

A better weekend and office visit 9/24

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09/24 13:15

The TPA in the nephrostomy lines on Friday did the trick. On Saturday morning, we were a little concerned at first, since the output was so bloody. It turned out that was just the result of the TPA loosening the blood in the line. Chris had come by again this morning to take a blood draw. They wanted to be sure that we were getting a correct dose of the antibiotic. By Saturday afternoon, the output of the lines was clear and in quite large amounts. The backup on the tubes may have caused some of the pain on Friday morning. Between flushing the lines out with saline and TPA, increased hydration from the new TPN formula, and a weekend on the Vancomycin, Alan was feeling much better! We even made it back to Morgan's Wonderland on Saturday and Sunday for more fun.

Auntie Karen came by with a special duvet cover. Friends, neighbours, and angels had been dropping off team jerseys with numbers on them with her, which she turned into a duvet cover with numbers all over for Alan. The number blanket has completely supplanted his old favourite letter blanket now!

The docs were very pleased with Alan's progress this weekend. The results from Saturday's blood draw were in and the concentration of Vancomycin is good. They still want to see us Wednesday and Friday to monitor his situation.



"Catching the candy" with Kevin and Daddy


Alan fell asleep, all the better to get his hand prints on the jar.


Checking out Daddy's game


At Morgan's Wonderland again to "catch the candy"


Bubbles with Auntie Karen this weekend


Checking out his awesome number blanket


So nice to sleep under