Remembering Alan's Birthday

We miss Alan terribly, and his birthday was hard, but you help keep him alive for us when you remember him. Thank you!


Harold continued the tradition, serving as Watch DOG at school on Alan's birthday


Judy and the "aunties" decorated Alan's grave with Sponge Bob and Chuck E. Cheese coins


Ready and waiting to greet our friends at Chuck E. Cheese with a chocolate birthday cake.


One of Alan's little friends with Chuck E prizes!


These sweet girls not only came to celebrate, but brought a donation from a fundraiser of their own!


It was so good to see everyone having so much fun at one of Alan's favourite places!


Kevin with a gigantic slinky - Alan would have loved this!


Kevin playing the giant Fruit Ninja, one of the new games that came in after Alan's favourite Great Ticket Carnival was rotated out. Alan would have had so much fun with this one!


Because it was an early release day at the schools, we were able to start the fundraiser at noon instead of 3 PM. Thanks to everyone who came out, we added almost another $300 to the endowment of Alan's Pediatric Sarcoma Research Fund at MD Anderson!

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!

Angels hard at work

Since we've been home, we have been blessed by the support of different segments of our community. We are so grateful for everyone's kind thoughts and help.

MOMS Club

The women of our MOMS club have been a big help to us from the very first day we found out Alan was sick. It's an unfortunate fact that we have been fighting with Alan so long that a new "generation" of moms have since joined the club. Old hands and new blood alike, they have continued to bring meals, buy bracelets, help with big brother, and just do everything they could to give us support. The latest was a Family Night at Bigz', one of Alan's favourite places to run around, where they collected money and sold Team Alan's Angels bracelets. Here is club president Melissa Lorch with a big card that everyone signed and the proceeds from the event.



The Retreat

One of our neighbours decided to hold a garage sale and give all the proceeds to us. She sent out a call to our neighbourhood and beyond for donations and people were incredibly generous. One military family that was moving gave all the goods that they were going to sell. The sale items took up not only the whole driveway, but the adjacent yards as well! Items that weren't sold at the end of the day were donated to the Salvation Army. We are so grateful to live in such an amazing neighbourhood. Check out the picture of the sale in progress and Miss Debbie coming buy to visit Alan and give us the proceeds and donation receipts. Thank you Debbie, Barbara and Pam!





Crown of Life

Not only did Crown of Life have a Pajama Day in Alan's honor and Childhood Cancer Awareness in September, they held another fundraiser right before Halloween. The children donated $2 to wear their costumes to school and Marissa, one of the mothers, organized a bake/lunch sale complete with a visit from former Spur Antonio Daniels. Alan was feeling well enough to attend on the second day of the event and got to see a bunch of the teachers who had dressed in Sponge Bob PJs in his honour. We even got to take him to a circle time with some of his old classmates.








Alan with his old teachers Mrs. Carroll and Ms. Casanova


Alan hugs his new Sponge Bob puzzle

Fire Station 46

One of the moms at Crown of Life called our local fire station to tell them Alan's story and they offered to come out to our house. This was fun since Alan had not been able to go to preschool or playgroups when there was a fire truck visit. They came not just with the ladder, but an engine too as well as Sparky the dog. Alan was sitting in the back seat of the ladder when the engine pulled up and he was so excited! They gave us a ride around the circle and presented Alan with a genuine firefighter's hat. That thing is heavy!!!

Team Summer and Team Alan's Angels

The bad news about Summer this weekend spurred me to take care of some bookkeeping. I had received the local proceeds of the Team Alan's Angels bracelets that Summer and her mother, Lynne, had given us. Not only had Summer's organization, Team Summer, been giving gifts to other kids with cancer, they had also offered "Team" bracelets to other families to sell. Half the proceeds would be kept by the family and half would go to the Team Summer organization to help other kids.

They have already sent us a cheque for bracelets sold on the Team Summer website. Now it is time to send them the money for the majority of the bracelets that had come home with us. Thanks to the generosity of our local community, I just sent $500 to Team Summer. I added a little to send a nice round number, but not that much more. We are grateful to everyone who supported us and Summer's mission.

Summer's family has asked for donations to Team Summer in lieu of flowers. With such a promising life cut short, with all that lost potential, I understand wanting to continue the mission of Team Summer - it is her legacy. When we watch Alan play with numbers, one of the things that breaks our hearts is seeing how clever he is, knowing that he will not have the time to realize all that potential. I had entertained dreams of Alan becoming a researcher like Dr. Aune, a childhood cancer survivor whom we had met at the St. Baldrick's event in March, or an oncology nurse like Shelby Robin, one of our favourite people at the Children's Cancer Hospital at MD Anderson. We are in the process of setting up an endowment to fund pediatric sarcoma research in Alan's name at MD Anderson. Pediatric cancer and sarcoma research is always underfunded and we want to support the work that Alan's doctors at MD Anderson are doing. We hope we can create a legacy in Alan's name that will go on and help kids like Alan and Summer in the future.

Making memories thanks to some amazing photographers

A wonderful photographer who is also the mother of a childhood cancer survivor reached out to us on this blog, offering to take photos. She had set up her business in order to be able to approach families like hers and ours to offer her photography services. Like us, she had so much support during her son's fight that she wants to pay it forward. She came with us to Morgan's Wonderland one morning and took some amazing pictures which she turned into this video.

We also had the opportunity last month to have a portrait session done by an amazing photographer, Elizabeth Homan, thanks to the generosity of my friends from Yoga Shala and Elizabeth herself. My friend Michelle did the post work and put together an amazing video.

We are trying to cram in a lifetime's worth of memory-making into what time we have left with Alan. Every picture and video is precious, and we appreciate these opportunities so much.

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[slideshow - At Morgan's Wonderland with Stephanie]

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[slideshow - Portraits by Elizabeth]

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Stephanie's pictures were so cute and candid I made a mug from them...

Mug

View the entire collection of cards.

A thank you to our "Wish Fairies"

It has been three weeks since Alan's amazing Make A Wish event. We were feeling a little grim before that day. Alan had been having a rough time of it and we were worried about what it meant. We were expecting a little trip and some diversion - ride the elevators and a few balloons. What an incredible experience awaited us! We were really touched by everyone who came out to make Alan's wish so special. The staff and volunteers at Make A Wish really went to a lot of effort to make the most of Alan's simple wish and from what I understand, the tenants and staff at the Weston Center as well as the Rackers who joined them took it upon themselves to make the event big!

All the balloons, banners, posters and gifts were delivered last week. Alan loves the plethora of balloons that arrived home! Looking at all the poster and banners, as well as looking back on all the efforts that day, we really appreciate how much trouble everyone went to find all of Alan's favourites and make things extra special for him.

To everyone there that day, I hope this message makes it to all of you, even if we couldn't go to every floor or send a card to every single individual. Thank you. You made a difference, not only to Alan but to our whole family. Your energy gave us a boost when we were feeling low. You made Alan's wish unforgettable, and we will never be able to thank you all enough!


Sleeping with all his balloons (and there's more downstairs!)


Trophies for Kevin and Alan from our friends at Cox Smith


Hurray!!!


Enthroned...

Office visit 10/11

ANC 5366
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

Carpe Diem

Harold made the following post on the Alan's Angels group on Facebook today, but I thought it was worth repeating.

One of the people we met while in Houston this last time was a grandmother who had worked as a nurse in home health and hospice care. The thing she emphasized to us several times over was that the kids who lasted the longest, who had the best quality of life up until the end were those who kept living... ie. kept going out with friends and family, getting dirty with paint, and doing things kids do at their ages. Basically going full throttle until they physically could not any longer.

If you had asked me almost a month ago (the day Alan came home) about how long he had... I would have been hard pressed to imagine him still being with us now. Things were grim at the time, and I was not very hopeful. But almost a month later, he is still here, going to Sea World to see the penguins , watching the roller coasters, and drinking soda...and still wanting to go to Chuck E Cheese! The majority of his days have been good days, laughing and having fun!

And it is all because of you.

Without y'alls support, we would not have been able to concentrate on getting him out there to enjoy life while he can. I am convinced that without that time outside, being.. well... Alan, that he would be much farther down his road than he is right now. His life and our lives have been so much better due to your efforts and generosity.

We will not ever forget what you have done for us. Thank you is not a strong enough phrase.

I want to add that not only did Patricia work with kids in hospice, she has lost an infant grandson and has two granddaughters that are terminally ill. So she spoke to us from deep, personal experience. Because we were constantly at the hospital, we didn't get to know her very well, but when Alan's news spread around the RMH, she reached out to us, and we are forever grateful. Just as we are grateful to everyone who has made it possible for us to spend the maximum amount of time with Alan and the strength to get him out and enjoying life.

Here is Alan enjoying some "Mommy Juice" (AKA diet Coke) at SeaWorld yesterday. We forgot his Sponge Bob hat at home so he got a SeaWorld "2012" hat - more numbers! We can not say "Thank you" enough to everyone who makes moments like this possible.

More video of Alan's wish

Thank you Graham Weston, all the tenants and staff of the Weston Centre, and the amazing folks at Rackspace who worked with the Make A Wish Foundation!

Video - Make-a-Wish, Push all the Buttons

The power of Yes

When we were told there were no more treatment options for Alan back in Houston, one of the things his social worker Miss Chelsea did was to expedite his case with the Make A Wish Foundation.

Since the start of his treatment, there have been so many times we have had to say "No" to Alan. And not like typical parents have to say "No". No, we can't let you out of the hospital crib that is practically a baby prison. No, there's no choice we have to stick you with a needle. No, you can't leave the hospital room if you don't wear a mask. No, you can't go home. No, you can't join your big brother at school yet. No, you can't swim today because your counts are low. No, you have to have this tube stuck in you. Once he was finally able to attend school, one of the counselors at his ARD meeting noted that it was no wonder that Alan has had speech delays. Not just because of the physical and social isolation that his treatment has required, but because in his experience, language is not a tool that works. Little kids usually start with simple requests that get fulfilled, thereby learning the power of speech. That was not Alan's experience.

Today was about saying "Yes". When we started talking to Make A Wish back when we were still in Houston, we asked if we could go to the biggest office building in town so Alan could watch the numbers go up and down and let him tell us which floors he wanted to go to. Riding the elevators wasn't just about the numbers that Alan loves so much, it was also about letting him make the decisions. It was something we did on our long rambling walks at MD Anderson - setting out in his wheelchair and letting him tell us where he wanted to go. He would tell us "this way", "that way", and what floor he wanted to go to. It was some measure of control we could give him, even while he was stuck in the hospital for over 12 weeks.

Last week, Make A Wish told us that the Weston Centre would be happy to have Alan come by. There was talk of a cookie cake, a few balloons and some people cheering him on, perfect since Alan is a notorious attention hog. And then dinner after the elevator ride at Chuck E Cheese with his little friends. Well during the 24 hours before the event, we got a few hints that it was going to be bigger than that. Friends were being encouraged to come by the building to cheer Alan on and I got a text from a friend whose company was in the building, apologizing that he would not be able to join the 150 to 200 of his coworkers that were planning on greeting Alan. Chatting on the phone with our contact at Make A Wish, she indicated that Alan's event was taking on a life of it's own.

Sure enough, when we got out of the limo that Make A Wish had sent to bring us to the Weston Centre, there was a big crowd in the plaza, many of them our friends who had come to see Alan on this special day. Sponge Bob Square Pants himself (wink) was there to greet Alan! There were more people in the lobby once we finally went in, including a camera from the local news station. When we rode up to Alan's first floor of choice (nine!), we were greeted by that floor's tenants with a big banner and a rousing rendition of Sponge Bob Square Pants! This was actually to be one of the smaller greetings. Each floor had more people, more balloons, more toys, and on one floor, King Fu Panda! On our second stop, Alan wanted to go past the elevator lobby and explore the offices. Even though they were pretty boring compared to the decorations that everyone had put up, today was about saying yes, so we wheeled him around before heading back to the elevator and another floor.

One of the building supervisors was in the elevator with us, calling out on the radio each time Alan made a choice so that the next floor would be ready for us and so that the other elevator full of photographers and Sponge Bob could follow us. We chatted with the building manager as she rode in the elevator with us and she told us that when they told their tenants that Alan was coming and why, they had asked if they could decorate their floors. They had all taken it upon themselves to make this event bigger than we ever could have imagined.

The Weston Centre is 30 stories, with three separate banks of elevators. There was no way we were going to be able to go to every floor and even Alan was getting overwhelmed by the amount of attention. We went down to the lobby to rest and regroup, then headed up to the 30th floor where they had made one of the corner conference rooms available for Alan to survey the view.  People on the floors that Alan hadn't visited made their way down to the first floor and by the time we were ready to go, they lined both sides of the lobby. Alan was basking in the cheers, waving and saying "Bye bye!" as we went out.

Then it was off to Chuck E Cheese, where Alan was able to indulge in one of his favourite activities, feeding the Ticket Muncher. The kids were so sweet, giving him their tickets. It was a long day for Alan, and he was pretty tired by the time we got home. But though we were all tired, we were buoyed up by all the support. Not just from our friends, who have stood by us for the last three and a half years, but by all the wonderful people at Make A Wish and the 30-story building full of people at the Weston Centre who knew us only by a name and a story but took time out of their busy day to shower us with kindness, warm wishes and support. It was overwhelming, joyous, and fun for Alan.

You can see the story on Alan from KSAT News here.
Update - a slideshow of pictures taken by the San Antonio News-Express is here.
Update #2 - another video of the event is on YouTube here.
Update #3 - a blog entry written by one of the people who came to support Alan's wish, including a picture of a rainbow over the Weston Centre, here, and another blog entry by a participant here.
Update #4 - another story, tweeted by Graham Weston 



It started with a limo


Alan likes this ride!


Auntie Karen, Auntie Janet, Kevin, and Grandma


Alan checking out the reception waiting for him at the Weston Centre


In the lobby with Sponge Bob


Afterward at Chuck E Cheese, it's all about the tickets!


In the Ticket Blaster with Elizabeth


Ready for blast off


Get those tickets!


"Ticket Muncher, here I come!"


Munch, munch, munch...

Pictures of bracelets and visitors

Hello Angels! Judy has a favor to ask everyone. For anyone that has a bracelet from Team Alan's Angels, can you please take a picture of you and/or your family wearing it and then add it to the bracelet album on the Alan's Angels Facebook page? 

Judy also is setting up an album for anyone that visits Alan. While visiting, please have Harold or Judy take a picture of yourself with Alan. Then add that picture to the Alan Visits album on the Alan's Angels Facebook page.

If you need to be added to the Alan's Angels page, let Sara Barnaik or Becky Cunningham know.  If you don't use Facebook or don't know how to add a picture to the album, email the picture to Sara or Becky and we will do it for you.

Thank you!

Office visit 9/12

09/12 17:25
ANC 1724

Today was our second full day home, and Alan was ready to go out and about. Miss Krysia came to visit and blow bubbles at Alan's command. Alan was showing off all the numbers on his throne, but when we started gathering things to head out to take family photos, Alan recognized the signs and threw aside his blanket. He was so eager to get out of the house he used his hands to start scooting out of his throne towards the garage door. He was ready to "Go, go, go!"

After the portrait session, we headed over to the Medical Center to see Doc P. He wants to see Alan twice a week to check on counts, since we will be starting him on a course of oral cyclophosphamide. He is good to go to school as much as his energy levels and white counts allow and is good to go to the beach one more time. He introduced us to his new partner, Doc B, who is fresh from a fellowship at MD Anderson.

After the visit, Alan was very tired but ate a few fries and asked for "ice cream/yoghurt" AKA frozen yoghurt at our favourite place, So Sweet. He was asleep when we pulled up but when we asked him if he still wanted his "ice cream/yoghurt" he woke right up and was bouncing by the time we got in. After the treat he was still pretty tired and went right to bed when we got home. We started the palliative chemo after he was asleep since we are able to crush the pill and put it through his G-Tube.




Miss Krysia blows bubbles


Childhood Cancer Awareness Day at the boys' school. One of Alan's classmates and his big sister wear gold ribbons


Showing Miss Krysia all the numbers


Where's the bubble Miss Krysia?


Time for vitals


Counting down the numbers


Raising his shirt for a blood draw, but he doesn't have a port anymore!


Time for ice cream/yoghurt!


Yum!