Memories and the future

We are in Houston this week for the semi-annual memorial service that MD Anderson Children's Cancer Hospital holds for its patients. We were a little apprehensive at first, unsure how we would be able to handle coming back to MDA. We had shared what we like to call the "Tee Hee!" photo with our social worker Chelsea, one of the organizers of the service. It captures Alan's playful spirit, and since it was taken after we had come home from Houston last fall, it was a new picture for many of the staff here.

It was hard to see the pictures and hear all the names of the children who have lost the fight with cancer over the last six months. So many names, so many candles to light. But it was good to see the people here at MDA who had taken care of Alan and been such a big part of our time here. Before the service, we decided to do a bit of the "Grand Tour" that Alan liked to go on last summer. We went up to the Skybridge, where we saw Miss Fairy, Miss Linda, and Mr. Ron, the Skybridge cart drivers who always waved to Alan during our walks. We were so touched by how excited they were to see us, and many hugs were exchanged. Though the newly renovated Children's Hospital floor is complete, it just means that the construction has moved elsewhere, and we were not able to visit the fountain that Alan loved to throw coins into.

Darci, one of our nurses, came across us in the hallway. We remembered her of course, one of our many wonderful nurses. We were really touched by how well she and others had remembered Alan and us. They have so many patients coming through their floor they couldn't possibly remember everyone, but obviously Alan made a lasting impression on them.

Nurse Shelby and Art Therapist Mister Ian were a part of the memorial service, as well as Miss Sheila (the Child Life specialist whose pink-cased iPad was a big favourite of Alan's) and of course our social worker Miss Chelsea. We got to visit with the Two Sara(h)'s today when we came back to talk to Child Life about donating something to the new playroom or the PediDome in Alan's memory. We were especially excited to share a collage from a photo shoot that our friend Michelle had done of Alan's Beads of Courage with Sarah, who had helped us with a lion's share of the beads that Alan earned at MDA. She teared up a bit at the picture at the center of the collage, saying what a long strand it was. I nodded, and told her "98 feet, and over 9 pounds..."


Miss Linda and Miss Fairy


With Nurse Shelby after the service


A collage of Alan's Beads of Courage

One other thing we did before the service was to check in with the Financial Office. They confirmed that the insurance company had made a final payment, zeroing out our balance at MDA. We had been waiting for this day, so we could use some of the funds that people had raised for us to fully endow the research grant we want to establish in Alan's name. Someone from MDA's Development Office came to see us while we were at the reception after the service to take care of the paperwork and we will soon be updating Alan's MyMission page with the following:

... Alan was a tough little guy - fighting cancer was virtually all he had known in his short life. We would like to continue the fight against pediatric sarcomas in his name. Thanks to the generosity of friends who agreed that Alan’s name and fight needed to continue, we are able to establish the Alan P. Sanders Pediatric Sarcoma Research Fund. Starting in June 2014, a grant will be awarded every year to support research against the cancer that took Alan from us far too early. We can think of no better way of creating a lasting legacy for him.

While we have reached the goal of endowing a grant, pediatric cancer research is so woefully underfunded. We will continue to fundraise to increase the endowment of Alan’s fund so that the size of the grants can grow over time...

Yes! This is something we were hoping we could do this week and all the stars aligned. Alan's fund is endowed and we will be counting down one year until we can make the first grant. Thank you to everyone who donated directly to the fund or had supported one of the fundraisers organized to help us!

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.

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...

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

Office visit 10/30

ANC 3170
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 9/20

ANC  3256
06/20 10:10

ANC 9146
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!

Getting ready to head home

Alan slept well his last night in the hospital except for one pain wave at 4 am, so we pushed the button on the PCA. He vomited around 5 am, but fell asleep after having the bed raised so he could see his reflection in the window. Because of the returning pain waves we decided to keep the PCA so that the demand button is available for morphine for now. Alan's stomach may have been upset by oral Dilaudid on an empty stomach. That meant nurse Sarah had to scramble to get orders written and a PCA pump delivered to meet us at home and getting in contact with Doc P back home as soon as the office opened so he could "own" the pump and prescription. We will have syringes of morphine for the ambulance ride home and Sarah was also arranging a pump for feeding during the trip.

Nurse Sarah had not only customized Alan's bolster with a crown with his favourite rainbow beads on the tips and the letter A, this morning she painted the crown and the letter A and wrote the numbers 0 to 9 on the back rest so he could have all numbers. She also had rest of the Beads of Courage he had earned at MD Anderson gathered.

Miss Becky, Miss Cookie, and Miss Aimee had come to help with the packing and discharge since Daddy had gone home last night to make sure everything was ready for our return home. It was a hectic morning getting things gathered up, changing his dressings one more time, and making sure all the medical orders were in place. There was a farewell party scheduled at 12:30 - Alan had been here at MDA so long and had charmed so many people that they wanted to give him a really big send-off. Along with his doctors, nurses and aids on the floor, there were also several of his therapists, Miss Sheila from Child Life, Miss Chelsea our social worker, our case manager, the chaplain, and several of the shuttle cart drivers from the skybridge.

Alan rang the bell and was presented with a certificate and balloons, including a great big Sponge Bob balloon that everyone had signed. While we won't miss being in the hospital, we are going to miss all these wonderful people. After some tearful good-byes, the driver and medic from the ambulance were there for our 1:15 pick up and the ride home.


Last sleep at MDA


Darci brings the last of the Beads of Courage earned at MDA


Miss Linda, Mr Ron and Miss Fairy came out to say good-bye


Alan comes out for his farewell party


We will miss all the shuttle cart drivers, who always had a smile and a wave for Alan on our walks


Gathering to say good-bye


Ringing the bell


Mr AJ presents Alan with the balloons


Miss Chelsea presents Alan with a certificate signed by all the staff


Nurse Shelby came on her day off for one more high five (ten, twenty, thirty....)


Alan loaded up onto the ambulance (Sponge Bob yellow!) stretcher


Alan was handing out his thank you cards like candy!


One more ride on an MDA elevator


Up we go!

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