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

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.

Acts of Kindness in Alan's Memory

May 2011, Alan feeds Kevin blueberries [video]

The MISS Foundation is a volunteer organization committed to providing C.A.R.E. - counseling, advocacy, research, and education- services to families experiencing the death of a child. The founder of the MISS Foundation started The Kindness Project as a way for families to honor their deceased child and to help themselves heal.



One of the reasons we want to create Alan's research fund at MD Anderson and his Hero Fund at St. Baldrick's is to keep his memory alive. The Kindness Project is another smaller but more personal way to do that. While July 27 is International Project Kindness Day, any day is a good to do an act of kindness in memory of a lost child. Alan's Uncle Duli has customized the printable cards from the MISS Foundation with Alan's name. If you are so inclined, please spread some kindness in Alan's memory, or in the memory of another beloved angel, and share your story and pictures.

More from Alan's service

One week after Alan's service and celebration of life, a belated sharing to those of you unable to attend - a message in the service's program from our family, to all of you who have given us so much support and love through the last four years.

Thank you for coming today to remember a wonderful little boy who gave us so much with his energy, laughter, and plain old determination. Alan brought so many of us together, allowing us to get to know each other through his strength. He showed all of us how much it means to be able to give of ourselves and to know what is important. Alan brought out the best in all of us.

Alan's spirit was 'supernova bright'. A supernova is a very large star (which typically shines brighter with a much shorter life span) that comes to the end of its life cycle and explodes with an intensity that can exceed an entire galaxy of stars. And that explosion of light forms the building blocks for new stars and new planetary systems. The word 'nova' itself is Latin for 'new'. We think of all the friends we have made, the people we have known, and hopefully the future families we can help. The end of one life, sowing the seeds for other lives to shine.

We, his family, consider all of you to be part of his legacy. We cannot hope to ever repay what everyone has done for us. The best we can do is to pay it forward, to help others as everyone has helped us, and to remember how fortunate we are to have all of you to thank.

With love and appreciation,
Judy, Harold, and Kevin

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.

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

Merry Christmas

We want to thank everyone who has wished us a Merry Christmas and all the kind thoughts and acts during this holiday season. When we brought Alan home in September, we had very little expectation of being able to enjoy Christmas with him in any way. Even dealing with his increasing nerve pain over the last few weeks, we have been looking forward to this. Our first day out of the spinal, Alan was still feeling the same level of pain and we were not comfortable pulling back on the base level of Fentanyl. But after we started the antibiotics and he'd had a few large bowel movements he started feeling better. He went longer and longer between boluses, to the point that the timer we were using reset after 24 hours, starting from zero again. Sunday afternoon we decided to scale back his basal rate by 10% and he continued to do well.

Doc E has said that the results should be felt immediately, but talking with him yesterday, he also said he is used to dealing with adult patients who know and can articulate between the original pain and the pain stemming from the procedure itself. We are hopeful for the next few weeks and Alan is comfortable, which is a great Christmas present!


Christmas stockings for Kevin and Alan


Alan naps with all the stockings!

Office visit 11/15

ANC 4369
11/15 11:30

More than two months since the CT results and coming home, we have settled into a routine and we have indulged in a little denial. Today though, we had a frank conversation with the Doc, asking for a reality check. Realistically, Alan's tumor is progressing. We are starting to see it in the small of his back. We got a new prescription of Lactulose to keep him comfortable, but we really need to prepare future arrangements.


Napping in Mommy's lap

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.

Two months

When we left the hospital in September, we had no idea how much time Alan had left, and those first couple weeks at home were rather rough. Alan was fighting off fevers before we started treating the infection and we hadn't gotten a handle on his vomiting yet. Frankly we were feeling grim and we had trouble seeing Alan able to hold on until his birthday in November.

Slowly we got Alan stabilized and even improving a little, partly due to different drugs and chemotherapy, partly due to being home as opposed to being stuck in the hospital. We continued our mission of memory making - family photos with Judy's bucket list portrait photographer, Alan's Make A Wish day, making it to the Pajama Day being held in his honour at school, one more trip to the JW Marriott for a staycation, getting to Trick or Treat on Halloween, Santa photos, and lots of trips to SeaWorld, Morgan's Wonderland and Chuck E. Cheese.

It's been two months since we've come home and we've made it to his birthday! Now we are looking forward in small increments, hoping to stretch out to the grand opening of the Holiday Illumination at the JW Marriott next weekend, perhaps one more trip to the pool, Thanksgiving attended by his teacher Ms Anna, making it to December and maybe an Elf Tuck-in, Christmas, and (dare we hope?) the New Year.

A lot of people remark on how well Alan looks and right now, he is very happy and active for the most part. He still has bouts of pain, and each time he has one we wonder if this is the beginning. But for the most part, we have been able to manage the pain and let him go out to live life to the fullest. We have indulged in a little denial while enjoying these times but realistically, we have to recognize that we have these good times because of multiple drugs to control his pain, tubes going in and out, and a lot of medical support.

We haven't stopped praying for a miracle, and while he is still with us, we can still hope. But we also realize that perhaps we have our miracle. Not the one that we have been hoping for, but a miracle nonetheless - that Alan has been able to fight this long, made it this far, experienced so much love and touched so many lives.

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...