Progressing

Doc M2 continues to call or visit on a daily basis. We are constantly adjusting the meds to control his vomitting or his pain. He spends a lot of time sleeping, awake for an hour or two at a time in the early morning, the afternoon or the evening. The sad truth is that Alan is sicker each time Doc M2 sees him, and we've talked about situations where the more prudent choice will be to let nature take it's course. We're not there yet, but are cognizant to the fact that it's coming. We have spent the fall in denial, just spending time making memories and making the most of every day. Lately though, we have been starting to make preparations for what's to come, so we won't have to deal with as many nitty gritty details when it's time.

Alan's swelling has gotten much worse, and the reduced output from his nephrostomies points to pressure on his kidneys. This means the only way to keep the swelling from getting worse is to bring down the amount of fluid going in. Giving him Lasiks would only dehydrate him while creating more swelling by sending that fluid into the reduced capability of his kidneys. Doc M2 has reduced the rate and volume of Alan's TPN and we will stop the saline fluids going in with the PCA. We've had to go so high in the basal rate in Alan's Fentanyl PCA that it's becoming quite a large amount of fluid going in. Coram has already given us the highest concentration of Fentanyl it can, Doc M2 has doubled our dose of Octreotide and we're at the maximum doses on the Toradol and Ativan. Alan has been on Fentanyl in some form almost non-stop since the end of June, so he may have built up a tolerance. Doc M2 switched him from Fentanyl to Dilaudid today, hoping that the change to a different type of opioid would make a difference. We've also started using Fentanyl patches again, as a way to keep up the level of painkillers while easing some of the fluid volume going in.

It was a very rough afternoon as we adjusted to the new drug, slowly working up to a level where Alan was comfortable again. Once he was finally comfortable, the basal rate of the Dilaudid was equivalent to the rate of Fentanyl we had been on before the change. However, the Dilaudid can administered at a higher concentration so at least we can cut down on the amount of fluid going in.


Alan checking out the Cure for Kids spirit stick for the Alan P Sanders Pediatric Sarcoma Research Endowment fundraiser.


Mommy gets to cuddle


Alan buried in the pillows with his Chuck E cup


It's good to be the king...


Yes, he's there under his pillow cave. Can you spot his foot? or hand?

House calls

Doc M2 has visited a few times since taking over as Alan's primary doctor. He had given us Octreotide last week when he prescribed the Protonix, to hold in reserve if we needed more help. While the vomitting has improved, Alan is still getting some bad bouts, so we've started administering the Octreotide twice a day now to help suppress some of the secretions in his stomach. Hopefully this will lessen the severity of the vomitting.

We are also continuing to vent the G-tube. At first we thought it would be a temporary measure, but anytime we clamp it he becomes very uncomfortable. We now have a supply of Farrell bags to continue venting out of the G-tube to relieve the pressure in his abdomen. Obviously this means we can no longer give him any oral medications - no more chemo, stool softeners, or Gabapenten.

Between the swelling and lack of bowel movements, Doc M2 agrees with our assessment that the tumor is starting to create blockages. We talked about what would normally be possible treatment options, but in Alan's condition, we need to be careful in  making the choice between a treatment and the consequences. Would the time and pain spent in recovery be worth the procedure? Are there risks to the procedure that would be heightened in Alan's condition? We had to talk it through, but by now, there really isn't anything in terms of procedures that we can do to make Alan more comfortable. We're going up on the pain medication as necessary and keeping an eye on his fluid levels and keep the TPN IV nutrition for now. It looks like the New Year's Day fireworks was Alan's last excursion out of bed.


Watching Sponge Bob while examining the planets


Alan just can't sleep straight 


Alan's Beads of Courage dressed up for the New Year

Happy New Year!

It's been a bit of a rough week since Christmas. The day after Christmas Alan started vomitting. We tried to help by giving him Aloxi, but since he didn't have any nausea, it didn't have much effect. It was more like the rapid onset vomitting that happened earlier in the fall. Doc B had surmised they were caused by spasms in his gut and after we started giving him Levsin, they had pretty much disappeared.

Since we aren't taking Alan into the office for regular visits any more, Doc M2 has taken over the lead in Alan's day to day treatment and he came to visit a few times over the last week. We went over all the reasons that Alan might be vomitting (nausea, blockage, stomach bug) and none of them seemed to fit. He wasn't acting nauseous - immediately before and after vomitting he looked completely normal. He had no fever or cough or any other indication that this was a garden-variety flu or bug. His stomach was still soft and his CT last month show no signs of intestinal blockage. However, we haven't seen any bowel movements during this period either. After a couple of days of this, he went from heaving up the yellow and yellow/green bile to a dark brown that was indicating blood. Doc M2 is speculating that intestinal spasms are causing the vomitting and that the frequent vomitting has been tearing up Alan's esophagus.

We've gone to two doses of Levsin a day and Doc M2 added Protonix to ease the stomach spasms and irritation in his esophagus. We have also opened up his G-tube to vent. We noticed an improvement right away with these changes. He's not as feisty and active as we are used to, but he's still getting Benedryl every eight hours with the antibiotics which may account for a lot of drowsiness. The important thing is that his vomitting is significantly diminished and the vomit is now clear or white instead of yellow or brown. Still no sign of an appreciable bowel movement, but if he is otherwise comfortable, we can live with that.

One of our goals with Alan's pain management was to get him to the New Year's Eve fireworks show at SeaWorld. Because of his discomfort this last week we decided to scale down our plans. The wonderful friends from Judy's yoga class who had already given us the gift of some amazing memories arranged a private display of fireworks at the nearby home of the Kobell's, handily situated in the unincorporated county where fireworks are permitted. Because of the rain last night we decided to postpone the show so tonight, Alan got to see fireworks for the first time. The boys loved the display and Alan had a great time calling out all the different colours. Every time Ken would light one of the fireworks and run away, Alan would call out "Try again!" . It was the first time that Alan had been out of his room for a week and he enjoyed the evening.

We were so thankful to be able to welcome 2013 with Alan and Kevin. Thank you all for your support throughout 2012! Happy New Year!


New Year's Eve


Alan waits for the fireworks with a glow stick


The finale

A trip to the ER

Alan hasn't been feeling a lot of relief from the spinal on Thursday yet, and late last night/this morning he experienced high fever and vomitting. After consulting with the Doc who was concerned about a possible infection from the procedure, we took him to the nearby pediatric ER.

They took a blood culture and started Alan on IV antibiotics. Since we had experience giving him antibiotics at home, we came home this morning for some sleep. After coordinating with Doc B, our home infusion company brought a delivery of Vancomycin, IV Benedryl and Cefepime. We are back on a schedule of antibiotics every eight hours.

He's feeling better already.

Hoping for some relief

Today was Alan's neurolytic lumbar puncture. We had a last minute change in venue - instead of the Children's Hospital we were going to an outpatient surgery center just down the street. Apparently the hospital was not used to doing the procedure and were reluctant.

After getting checked in and getting Alan set up on a gurney, we started going over different aspects of the procedure with the anesthesiologist, the nurse and Doc E. The anesthesiologist will start with a little Versed to relax him, put him to sleep with Propofol, then give him gas to keep him asleep since they need to keep him absolutely still during the procedure. When the nurse came by, we realized that since they were going through his back, since this procedure is essentially a lumbar puncture, they would need to remove the nephrostomy dressings. We asked if they could wash and redress them and restitch the suture on one of the tubes that had come out.

Doc E came to see us to go over any last minute questions. Nothing had changed. We were willing to live with the downsides of the spinal since we are in fact living with them to some extent already. Doc E asked for permission to write a paper on Alan's case if the procedure worked, since there is so little literature on the subject.

The procedure went quickly and smoothly. the longest part being the waiting for the alcohol to sit and do it's job. We soon met up with Alan in a recovery room where he snoozed away on the gurney.

Now we just have to wait and see if it worked.

Transfusion

As planned during yesterday's office visit, we came into the Children's Cancer and Blood center for a blood transfusion before the Thanksgiving holiday.

Kevin came too so we could all spend time together. Alan once again chose to hang out in the playroom, watching the Sesame Street numbers DVD and going through all the different toys. Near the end of the transfusion he was getting a little tired, so we brought  one of the kiddie recliners over so he could sit back and watch TV while we finished up.

Another stitch

While getting his IJC dressing changed, we noticed that the other suture had come loose. We had already gone to the ER back in October to get a new suture put in - now it was time to replace the other side. The doc in the ER this time was not familiar with propofol so he used ketamine instead. It still took a lot to get Alan sedated enough to replace the stitch to stabilize his line, and unlike the propofol, it took Alan longer to wake up from it.

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 10/11

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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

A trip to the ER

Doc P sent us to the Pediatric ER just down the hill from us to get a new suture on his IJC line. He called ahead so they knew to expect us. Since he wasn't NPO they couldn't give him anesthesia. The ER doc had suggested giving him some Ativan to calm him down for the stitch. They only needed to do one, but they would need him to be absolutely still. After discussing the situation, we decided to go ahead and sedate him with careful monitoring.

While we were waiting in the treatment room, we were surprised to see Sandy, one of the nurses from Pedi Prep and Hold at the Children's Hospital Radiology department. She had been there the day that Alan was diagnosed over three years ago and has seen Alan through a lot of his treatment. When the tumor first reappeared we started doing our scans at MD Anderson so we hadn't seen her in a while. It was a pleasant surprise to see her again and she couldn't get over how big Alan had grown.

It took some time to hook Alan up to the monitors and prepare everything. The doc wanted to be sure everything was ready before pushing the Propofol since he wanted Alan under for as little time as possible. It took a while to get Alan under - he's used to it which is good and bad. We know it's effective with little side effects. However, since the ER doc wasn't an anesthesiologist, he was being cautious in administering the drug and every time we thought he was under, Alan would fight it off. When he finally fell asleep, the doc worked quickly, but even so Alan was starting to stir by the time they were starting to put the dressing over the IJC line. So much for Mommy's plan to trim his nails before he woke up!

He was awake and alert almost immediately. The doc couldn't believe it, especially given the amount of Propofol he had to use. Since this was a pretty tough dressing change, we agreed when he asked (again!) to go to Chuck E. Cheese. It was the least we could do for him.


Alan in Triage


Is he sleepy yet?


Alan and Sandy


At Chuck E Cheese after

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!

Office visit 9/21

We came straight to the office from Morgan's Wonderland where we had been taking pictures. Alan was having a good time when all of a sudden he started crying and holding his stomach. We had an appointment early in the afternoon, but after calling, came in right away.

Alan was dehydrated, hot with a fever, and showing signs of infection. Based on yesterday's cultures, the docs want to continue fluids for hydration, IV antibiotics and Toradol for the pain. The additional hydration will be added to Alan's TPN. The course of antibiotics Alan needs is usually done in the hospital, but Doc P saw that I was not happy with that option. I am so afraid that if Alan goes into the hospital, he will never make it out. Instead, he will order the Vancomycin from Coram, our home health infusion company. We will get one treatment in the office, then Coram will deliver the rest to our home for us to administer. Our nurse Chris will come by the house to show us how to set it up. It turns out the vancomycin will be dispensed in an elastomeric pump similar to the Eclipse balls we use for his normal saline every day. No need for yet another pump and backpack.

In addition to the newly TPN formulation and antibiotic, we waited for Doc P to be free so he could flush Alan's nephrostomy tubes. None of us were happy with the output and were concerned that they were clogged (and possibly clotted because of the blood we were seeing in the bags). It meant more delay. This was something that Doc P wanted to do himself, so we had to wait until he was free. He flushed some normal saline into the lines several times, then put in some TPA. Hopefully this will do the trick.


"Come on Doc P! I have places to go..."


He's here!


"Good job Doc P! Now let's put these bags away..."

Office visit 9/20

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06/20 10:10

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09/20 16:15

Alan has been having fevers, nausea and vomiting over the last couple days. The docs took cultures and gave him some IV antibiotics and fluids. Hopefully that will make him feel better, but we will be back to be seen again tomorrow. Miss Jennifer from Child Life dropped off Alan's beads from the first year and half of his treatment here in San Antonio, so Alan started stringing.


Stringing his beads


Look at this pile!

Last weekend

This is our last weekend at MD Anderson before heading home on Monday. On Saturday, we took Alan on a ride on one of the shuttle carts on the Skybridge. Since he didn't need a basal rate of morphine we are able to unhook him from the IV stand for short periods. The Sponge Bob back pack that Miss Kathy gave Alan back in July has come in handy for these adventures, holding his nephrostomy bags and the G-Tube while he is out of the bed and wheelchair.  Alan was quite excited when he saw we were going to go for a ride on one of the carts, throwing the Sponge Bob blanket aside and trying to get out of the wheelchair on his own.

After the ride we concluded our walk, getting back up to the 10th floor to play Bingo one more time. Alan wanted to right up front with the Bingo number dispenser, and he got to call out some of the numbers. He was feeling pretty good, so we headed up to the Observation Deck to test out the bolster that Miss Lindsay made for him, snagging a box of fresh popcorn on the way. After some adjustments, we decided we would need the bolster to be another layer higher and to use one of the pieces of foam cut out to make a backrest. Nurse Sarah will take care of it tomorrow once we get another piece of foam from Rehabilitation.

Once we got back from the Observation Deck it was time for a blood transfusion.


Sleeping in


Waiting for the shuttle cart


Ready to go!


Alan and Miss Fairy


Hurray!!!


Bingo!


Testing the bolster


Comfy!

On Saturday night, Alan woke up twice with significant pain and vomited, so much that he needed a nursing bolus of morphine. Alan was subdued on Sunday morning, falling asleep during the walk and not wanting to ride the shuttle again. Miss Becky and Miss Cookie had arrived from home to help out while we discharged from the hospital and checked out of RMH for the last time.

Nurse Sarah added the third layer and a backrest to his bolster, and then tricked it out with a crown tipped with his favourite rainbow beads from the Beads of Courage and the letter "A" for Alan. Now it's a throne!


Going for a walk with Miss Cookie and Miss Becky


Nurse Sarah made a crown for the back of Alan's "throne"


Anna brings another batch of beads


Alan snuggling with Miss Cookie and wearing one of his favourite rainbow beads on his head


Alan earned so many that Sarah had help bring some of them in a separate batch


Beads of Courage earned at MDA from 2010 to June 21, 2012


Alan's throne


Painting one more time