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 better weekend and office visit 9/24

ANC 3523
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

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..."

Learning curve

Today we had our first visit from Chris, our home health nurse. He did a basic exam of Alan and we changed the dressing on his IJC. Chris also verified that we knew how to prepare and change the bags and lines for Alan's saline and TPN. Doc M2, the home health and hospice physician, also came by to see Alan and introduce himself.

It was a busy day for visitors. Miss Becky came by to give Alan kisses and see how he was settling in. Some of our neighbours came by with an awesome shirt they had made for Alan. Finally, representatives from Make-A-Wish also came to do an intake interview and get information to pass on to the central office for Alan's wish. They brought a cool wand filled with glitter and stars for Alan that we dubbed "The Wish Wand".

After barely a day of handling Alan's equipment, fluids, meds and lines, we have come to the conclusion that we need more hands. It's a steep learning curve, even after three and a half years of watching Alan's care closely. We have always admired and appreciated Alan's nurses, but now we think they are superheroes!



Ahhh, asleep at home!


Miss Becky had to go through the balloons to find Alan's head to kiss


Colourful!


Bubbles!


Asleep at his throne


Cool t-shirt dudes!


Make-A-Wish