Thinking of Alan One Year Later

St. Baldrick's remembered Alan, one for their five Ambassadors for 2014, with this beautiful picture and an entry on the Foundation blog

We spent the first anniversary of Alan's passing doing his favorite things. We started at his preschool, where we presented them with a little kid-sized bench for the playground. Pastor Barz had a lovely prayer to dedicate the morning, and the staff surprised us by passing out bubbles for all the children to blow. We had presented a bench to the elementary school the previous day and loved how enthusiastically the kids in PPCD and Ready, Set, Go wanted to sit on it.


With Kevin and Alan's teacher Ms. Anna


Little benches for Alan's little friends


The benches were given to Alan's two schools with great thanks for their support


At Crown of Life with Pastor Barz and Director Diane Dillow

We went on to lunch at Chuck E. Cheese with one of our little friends and just remembered all the good times Alan had there. We gave out cups of tokens in Alan's memories, using the cards from the Random Acts of Kindness project.


Tokens in Alan's memory

We took some the balloons from preschool to Alan's grave and blew him bubbles there.


Balloons and bubbles for Alan

We had dinner at Perico's. The boys loved the playground there and we had Alan's fourth birthday dinner there, where he got to sport a flashy blue sombrero. He had been walking so well then, recovering from the hemipelvectomy and even occasionally ditching his speedy bright green walker. It was a very hopeful and happy time.


Alan's fourth birthday dinner at Perico's

We capped the day at Krispy Kreme. As luck would have it, the hot light was on which meant the production line was running. Alan loved to watch the donuts come off the line, I think even more than eating them. It was the perfect way to end a day of remembering our Alan.

The first Angel-versary

We often hear how special we are as a family. To take what we went through and turn it into drive to raise money for research into a cure. How we've shown steadfastness in the face of adversity. Maybe we are special... but if we are it is because you - our friends, our family, our community - have made us that way.

Dealing with cancer has sometimes been described as facing the dragon. The thing is though, it is rarely possible to take on the dragon alone. Usually, you want an army at your side. They're there to fight with you, to help you up when you fall, to take the fight to the dragon when you need to rest. And what we have seen in our army of supporters we have also seen when we look in the mirror. We know that if you had to, you would rise to the occasion as we had to... because we saw it in how you rose to help us.

We truly do not believe we are special, but circumstances have forced us to step to the challenge. While obviously there are some people out there that break in the face of adversity, we know that our friends, neighbors and community are the type of people who would face it head on as we have, because they have been beside us and behind us to hold us up through our trials.

It was hard to face a new year for the first time without Alan, but knowing that he would continue to make an impact as one of five St. Baldrick’s 2014 Ambassadors was something for us to focus on. And we are grateful for wonderful friends that are organizing fundraisers to recognize the first anniversary of Alan's passing.

Through Alan's fight, we had met some childhood cancer survivors who gave us hope that not only could Alan beat cancer, but also pursue a full life. Shelby Robin was one of Alan's wonderful nurses at MD Anderson. Dr. Greg Aune shaves with Harold at the San Antonio St. Baldrick's event, sits on the organizing committee for the event with Judy, and is a pediatric oncologist and physician scientist at the Greehey Children’s Cancer Research Institute. We looked at them and hoped we were looking at Alan's future. He was so sharp, so curious, and had so much potential. Alan was tenacious and relentless, qualities that sometimes drove us crazy but that stood him in good stead through his fight with cancer and we hoped they would carry him through his future.

Supporting childhood cancer research is important to us. We hope one day that other families won't have observe an anniversary like this. We hope that one day more kids will have Shelby and Greg's future. Continuing the fight keeps Alan alive for us, creating a legacy for him - one that he didn't have the chance to create for himself.

Alan and Shelby do "Hurray!


Farewell angel


A retrospective of Alan's first year, one year after we had to say good bye

If you are interested in attending one of the fundraisers being held on January 31 to mark the first anniversary of Alan's passing, here are the details.

Alan's Angels Bunco Night - DFW
Alan's Angels Bunco Night - San Antonio

Christmas without Alan

We could not face spending our first Christmas without Alan at home. We considered a few alternatives, but then an opportunity presented itself - Trent's Retreat. The retreat is a beautiful two-bedroom cabin right by the river in Ballinger, built by the Ueckerts for families facing childhood cancer to get away, in the memory of their son Trent.


Kevin had fun on the playground at Trent's Retreat


We did some Christmas baking while we were there, remembering Alan.


The view from the front porch of the Retreat - the skies were crystal clear, and we spent every evening bundled up at the end of the walkway watching the stars. We got through Christmas by focusing on making it a great holiday for Kevin. He had fun on the retreat's playground and mini-golf course and was thrilled by the opportunity to star-gaze.


Not only did they provide us with this chance to get away, the Ueckerts also collected donations for Alan's research fund at their restaurant. Thank you Misty and David and all the patrons of the Main Street Soda Fountain for adding another $150 to the endowment!

Our first birthday without Alan

Today will be our first birthday without Alan.

To remember him, we are having a fundraiser at his beloved Chuck E. Cheese. His favourite game is gone - it was moved to another store as part of a regular rotation of the attractions. We know which location it was moved to though, and the manager allowed me to put a picture of Alan in the inside of the game cabinet along with a few words about how much Alan loved the game. Hopefully they will let us know when it moves again. But we will be there for his birthday, with lots of cake to welcome all our friends who come remember Alan and to help us fight childhood cancer in his memory.





To honor his five years of life, we have decided to give five gifts every year for his birthday in his memory. This year, the gifts are:

1. a donation to the Ronald McDonald House Houston to cover a family's stay for one week. RMH Houston was truly a home away from home for us after Alan's first relapse. We had many stays there while getting treatment at MD Anderson, sometimes lasting for months.
   
   
   
   
   
   
2. a flock of 5 Wingman beads for Beads of Courage. If you were at Alan's visitation or service or seen pictures from those days, you may recall the incredible lengths of beads documenting Alan's battle with cancer. Alan earned approximately 1362 beads in his almost four years of cancer treatment. With the extra beads he was given by the nurses and Child Life for courage, travelling for his treatment, doing dog and music therapy, birthdays while in treatment, spending Christmas in the hospital and other special events like Beads in Space and Laughter is the Best Medicine, Alan's Beads of Courage were 98 feet long and weighed over 9 pounds.
   
   
   
   
   Thank you Michelle Kobell for these photos of Alan's Beads
   
   
3. to sponsor a song for another child with Songs of Love. They had produced a beautiful song for Alan when he was first diagnosed.
   
   
   Hear Alan's song
   
   
4. items and shipping for Shoe Box Christmas presents through Crown of Life, the church where Alan went to preschool, was baptized, and where we had his memorial service.
   
   
5. a donation to the Make-A-Wish® Central & South Texas chapter. Make A Wish made Alan's simple wish a really special day for our whole family. We want to help them make special days for other families too.
   
   

One year after The Wish

One year ago, we took Alan to the Weston Centre for his very special wish. It's hard to think back to that time. His wish was rushed, since the doctors didn't know how long he would have. In the weeks between coming home and The Wish, we were feeling pretty down. While it was good to be home, we were exhausted since we were taking care of most of Alan's medical needs, learning how to handle all his medications and IVs, handling the dressing changes, and fighting off his infections and nausea. We didn't know if he would make it through the end of the month and we were feeling grim.

And then came The Wish. It was supposed to be a little thing, being able to say "yes" to him. But the Weston Centre tenants, employees of Rackspace, and so many more people had heard about Alan's wish and took it upon themselves to make it huge, amazing, and special.

The effects were both immediate and long-term. It really marked a turning point for us. Alan had a great day, full of smiles and laughter. We felt the energy ourselves, feeling lifted up by everyone's good wishes and support. After The Wish, we took Alan out almost every day. We took our new energy and made the most of the time we had left with Alan.

We often look back and think about that day. The picture below is on our bathroom mirror, so we see that smiling face every day. And we smile with the memories of that day, of The Wish.

Thank you Make A Wish, thank you Graham Weston, thank you all the tenants of the Weston Center, thank you Rackers, thank you Geekdom, thank you to everyone who came to cheer Alan on and lend us your support. We will never forget.

Some thoughts for Childhood Cancer Awareness month

Some thoughts as we go into September and Childhood Cancer Awareness Month. We're coming up on nine months without Alan. This weekend, however, is a different kind of milestone. We have been spending time at WorldCon right here in our home town. It's no secret we're a geeky family, and Harold and I had been looking forward to the time we could share this world with our boys. But last December I had to make the conscious decision to buy just three memberships for this Con. Alan was still with us, far longer then we had predicted or even hoped for in September. But we knew he would not be with us this weekend. So the plan for this weekend was our first step forward without Alan. We've tried to keep him with us in our family photos, usually with a photo or other image of him. At the Photo Booth though, we decided to hold penguins, one of those monochromatic animals he loved so much. Alan would have had so much fun tossing live action Angry Birds with Kevin.



I've had some people admire and ask about the SF-themed shirts I've been wearing to the Con so far. Because Childhood Cancer Awareness Month starts today, I won't be wearing my geek gear - instead, I'll wear gold for Alan. And if just one person asks me about my shirt, and I can raise awareness about the funding gap in pediatric research and why childhood cancer needs more attention, I'll consider it a good day's work.



Finally, we are so grateful to everyone who ordered an "I Launched Alan's Hero Fund" t-shirt - we sold 109 t-shirts and $460 will go directly to St. Baldrick's Foundation to support childhood cancer research in Alan's name. Thank you!

I have already heard from several people who had missed the opportunity to order a shirt. Unfortunately, we had to close orders after ten days in order to print and deliver the shirts in time for the launch. If enough people indicate an interest in ordering at least 50 shirts at $17, I can relaunch the campaign at Teespring (this time with a longer window to order). Send me an e-mail, comment on Facebook, or leave a comment here if you are interested and how many shirts you would want.

Kindergarten

Today should have been Alan's first day of Kindergarten. This is our first major missed milestone and it's hard not to think about what might have been. Alan loved going to school, so much that he cried at first when the bus brought him home from preschool. He loved his friends, his teachers, and learning. He would have been so excited to be able to spend the whole day at school.


Coming home his first day of preschool - August 2011

Six months

Today marks six months since we lost Alan. It's been only a moment and it's been a lifetime. We will spend time together as a family today, in a park that Alan had enjoyed. Last week, Judy went with Lisa and Stephanie to take some of the books and toys donated by the 46 Mommas to our hospital, Methodist Children's. This was our first time back in the hospital since we came for the Beads of Courage Beads in Space tour last September, and due to the renovation, the first time back on the Ped/Onc floor since Alan went to MD Anderson last spring. It was startling to see things look so different and yet the same.

Seeing the staff that had known and taken care of Alan was bittersweet, but it was touching to see how many had remembered us, especially since it had been so long since Alan had been inpatient there.

This weekend, we wrote Alan's name in the sand. We were sad that we couldn't take him to the beach one more time but realistically, we know it would have difficult for him to be at the beach and not to be able to plunge right into the water. Seeing the waves come in and slowly wash his name away was hard feeling to process.








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[Thank you Russ and Denise for this wonderful slideshow of Alan's life]

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!

A wish for Mother's Day

On this first Mother's Day without Alan, Summer's mother, Lynne, shared this post about a healing heart, six months after Summer's death.

Lynne says

...that rose bush made me think of my heart, which feels like it has been cut down to within an inch of its life. Maybe, like the rose bush, my heart will grow back, too. Maybe with time – with grace – it, too, will bloom again.

This, too, is my wish today.

Three months

Alan left us three months ago today. We have been adjusting. We had a long time to say good bye, pre-grieving before the end because we saw it coming for such a long time.

We taken some family trips without him, got through some holidays without him, tried to get back to life as normal without him. Except it won't ever be normal like it was before. It's hard going out as a family of three.

We have been talking with friends, old and new, who have also lost a child. It helps. When you lose your parents you are an orphan, if you lose a spouse you are a widow or widower, but what are you if you lose a child? There's no term for it, because it's so un-natural.

The milestones continue to come, each one taking us farther and farther away from Alan. We attended the dedication of a tree in Alan's memory at his school. When his teacher Ms Anna asked what they wanted on the plaque, his classmates said "Alan was our friend". Surrounded by Alan's classmates and teachers as well as Kevin's class, we blew bubbles and released a massive bunch of golden balloons. After a break, a small group of Alan's friends came out to join hands and make a circle around his tree.

















We laid him to rest at the family plot, with a tree at the foot of the plot. We will put a bench under the tree as well as the headstone. Alan's urn was accompanied by coins from the staff of Chuck E Cheese and Morgan's Wonderland as well as a plush Sponge Bob and Chuck E. After the service, our little friends "planted" flowers over his grave.









We thanked almost 150 of our local friends who had given us so much support over the last four years at one of Alan's favourite places, Morgan's Wonderland. It was also the unveiling of his name on the Memorial Wall in the Sanctuary Garden. We also had a reunion of the Alan's Angels team, with fuzzy heads two weeks post-shave and over $8,000 raised for pediatric cancer research.













We have a temporary marker right now. The permanent headstone and the customization of the bench will take some time to proof, carve and install. In the mean time, this stone will mark Alan's resting place.



With the three month milestone today, Alan was especially on our minds. Harold was making up a Kevin/Alan song to the tune of Pinky and the Brain at bedtime when Kevin said "Alan is sick". Harold was a little surprised and replied, "No, not anymore." Then Kevin said "Alan is gone." and Harold replied, "Yes," and asked him "how does that make you feel?" Kevin said "Empty". And that's how we all feel.