Two weeks

It has been two weeks now that Alan's left us and it has been a very busy, intense, emotional time. The last of the visiting family left two days ago and the house is so quiet now, especially when Kevin is in school.

We have been getting on with life, especially since we need to concentrate on Kevin now. There's plenty of paperwork to get started and we've started donating some of the less emotionally-charged items to the Ronald McDonald House. We've been dealing with so many firsts - the first trip to Costco, to Chuck E. Cheese, and so on -  often accompanied by memories. At Costco, we laughed over how Alan would insist on the big cup of frozen yogurt. At Chuck E. Cheese, we lingered over his favourite game. At school, passing his classroom and walking down the halls he used to walk. A particularly emotional moment came when the new blog posts pushed the last post written when Alan was alive off the front page.


Kevin hits the jackpot on our first visit to Chuck E. Cheese

Thanks to all your generosity, Alan's research fund is over half way to being endowed. Though we have five years to raise the $20,000.00 needed, with everyone's support we should be able to endow it this year, possibly as soon as this spring once we settle all the final costs and gifts.

We are also gearing for the San Antonio St. Baldrick's event on March 9, where Harold will be shaving again to raise money for pediatric cancer research. This year, Alan's Angels has a few more shavees on the team, including Alan's little buddy Dylan.

Yesterday, the PTA presented a half dozen books to the school library in Alan's memory. They chose so perfectly - lots of Sponge Bob, pandas and rockets - to cover Kevin and Alan's interests. They had some beautiful bookplates printed up so that even as kids grew up and moved on, there would be a remembrance of Alan at the school.


The school librarian, Harold, and Judy hold up the donated books


The books - lots of Sponge Bob! 


The PTA printed up special bookplates for the books

Visitation and Service

The visitation and service were two very long days, but we are so thankful for all who came to lend us their support. We were truly surrounded by love. Our friends had worked for hours putting together a slideshow of Alan's life that play all through the visitation and the reception after the service. Rather than flowers, there were stuffed animals all around Alan's casket, beautiful photos of Alan and our family, the Alan's Angels wall-hanging and the completed strand of Alan's Beads of Courage. The day before the visitation was the first time we were able to stretch the beads out - even with the length of the chapel at the funeral home we had to double up the strand. Alan's strand ended up being 98 feet long, made up of the 1362 beads earned from medical procedures and events as well as the special beads awarded to him for courage, travel, holidays and support.




98 feet long


The beads on display

The service was as perfect as we could have wished for, especially when the children starting coming down to the front of the sanctuary for the children's service.


Alan sitting in the lap of his beloved panda


Pastor Barz leading one of Alan's favourite counting songs during the children's service

Our only wish is that we could have cloned ourselves in order to properly greet and remember with everyone at the reception. We are so thankful for Stephanie Smith, who took photos last Saturday so we could look back on the day.


Alan's "gift" to the children attending the service

People have been asking if we will be sharing the slideshow and video of the service with those unable to attend. The video of the service is being edited and once we find a way to post them (they are too long to put on YouTube) we will share them here on the blog.

There was a beautiful article in memory of Alan in Friday's San Antonio Express News.

Sharing Alan's story

Yesterday, Judy was interviewed by our local NBC and ABC stations. Here are links to the interviews. She did great!

WOAI (NBC) interview:



KSAT (ABC) interview:

[Unfortunately, KSAT doesn't have a feature to embed the video, so please click through to see the interview]

Update: The Friday edition of the San Antonio Express-News included a feature obituary about Alan (in addition to the regular obituary in Wednesday's edition - please sign the guest book if you have a chance).

Remembering Alan

Since Alan passed, I have been watching videos of him while stringing the rest of his Beads of Courage. I'd like to have them ready to display at the viewing and service, to show what a long and brave journey he took. We have the last of the beads he earned, including a very special butterfly bead which is supposed to symbolize hope and peace.

I made a playlist of videos of Alan on YouTube and have them shared here. It's currently a little over two hours long and I keep adding, but I hope you enjoy browsing through them.
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Remembering Alan - a playlist of videos on YouTube

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We shared this picture on the Beads of Courage Facebook page to celebrate the new year. We were so happy that Alan was able to see the beginning of 2013!


The last of Alan's beads arrived


A butterfly bead to bring hope and peace


Wrapping Alan's beads around a rocket body tube to keep them untangled - Daddy is inspired...

Please bring a favorite picture to the service

Judy and Harold have requested that people bring a favorite picture of Alan, or you with Alan, to the viewing and service this week. They will have cork boards set up to display the pictures.  Please bring only one picture per family (5x7 or smaller) so we have enough room.

Just a reminder, they have requested NO flowers.

Another thing you can do in lieu of flowers is to make a donation to Alan's Pediatric Sarcoma Research Fund.

Thank you!

Information about Alan's services

Harold and Judy have scheduled a visitation for Alan on Friday, January 25th at the Sunset North Funeral Home.  The start time will be 10:00 a.m. with an end time of 9:00 p.m. (the start time may change, but the end time is definite).  The address is 910 North Loop 1604 East, San Antonio, TX 78232.  This is an opportunity for people to say good-bye to our sweet angel. Alan will not be at the Saturday service.

The church service will be held on Saturday, January 26th at 11:00 at Crown of Life Lutheran Church. The service should end by 11:45 with a reception immediately following at the same location.  The address is 19291 Stone Oak Parkway, San Antonio, TX 78258. Children are welcome at this service. It will be a celebration of Alan's life with some of his favorite things and the playground will be open! The reception will end at 2:00 p.m.

If you are coming in from out of town for the service, will you please let me know via email at bcunn929@gmail.com?  Harold and Judy want to make sure they know the special friends that have traveled to say goodbye to Alan.

Thank you again! Judy and Harold know how special Alan was to everyone and appreciate the love and support.

Travel arrangements for out of town guests

For those of you that will be coming from out of town for Alan's service, the funeral home, has a Bereavement Travel Program. You can call 1-800-224-4177 and tell them you are attending Alan Sander's service and the code 4452. They will assist you with booking flight and/or hotels at a bereavement rate.  You can also contact Drury Inn & Suites or Staybridge Suites directly and tell them you are attending a service at Sunset North Funeral Home and they will give you a discouned rate. 

Drury Inn & Suites
1-800-druryinn
1604 at 281 North
801 North FM 1604 East
San Antonio, TX 78232

Staybridge Suites
210-497-0100
808 N. Loop 1604 East
San Antonio, TX 78232

I will post specific times for services as soon as I can, but they will definitely be Friday, January 25 and Saturday, January 26.

Thank you again to everyone for their love and support!

Saying goodbye to our Angel

It has been a very difficult 24 hours. Alan had been breathing shallowly for the last few days, but at 11 am yesterday morning, his breaths became very hard and laboured. We called his nurse Chris and Doc M2, and Chris was soon here to do an assessment on Alan. Alan was only breathing from the upper half of his lungs - the bottom half was under pressure from the tumor. We're quite sure his pain was controlled, but Alan was understandably anxious about the difficulty he was having in breathing.

There wasn't really anything we could do except calm him. It was the continuing encroachment of the tumor causing this pressure and because he was getting saturated with CO2, giving him additional O2 would not have made him more comfortable. The opposite in fact, since hypoxia would have put him in a pain-free state.

Eventually, he just became exhausted by the effort it took to breath. Doc M2 likened the work Alan was doing to breathe to running a marathon. After five hours of fighting for breath, Alan finally slipped away shortly after 4 PM.

We were surrounded by love, both Alan's and all his angels. In the past week, we have gotten involved in a group of bereaved cancer parents who have helped us on this path that they have taken before us. The "aunties" were here to help us say good bye as Alan was taken away in Sponge Bob PJs. We spent the rest of the night crying, looking at Alan's pictures and remembering his indomitable spirit, soaking in the love, sympathy, and prayers being sent our way and self-medicating with a quarter gallon of Floresville Tin Roof Sundae and three bananas.

This morning we will try to get through our first full day without Alan. The house is too quiet.


Resting with Mommy


Daddy lifts big brother Kevin up for a kiss


Alan gives Mommy a kiss

Goodnight Mr.Cheeks

I am posting on behalf of Harold and Judy. I'm sorry to say that we lost sweet Alan this afternoon at 4:00. He is now an angel watching over all of us. Harold and Judy have requested NO flowers. Instead, please consider donating to Alan's Pediatric Sarcoma Research Fund. They have also asked that everyone holds off on phone calls until at least Sunday, so they have some family time together through this difficult time.

The visitation will be on Friday, January 25th at Sunset North Funeral Home and the service will be on Saturday, January 26th at Crown of Life.  If you would like to see Alan, he will be at the visitation on Friday and not at the service on Saturday. On Saturday, there will be a children's service within the service, so kids are welcome to come and celebrate Alan's life. We will post specific times and details later.

Harold and Judy appreciate all the thoughts, prayers and love that is being sent their way.

Thank you,
Becky Cunningham
bcunn929@gmail.com

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