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...

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

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!!!

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.

Office 11/8 and Alan's birthday

ANC 3450
11/08 11:40

After celebrating Alan's 5th birthday, we were back at the office. The counts look good and we finally have a handle on the TPN mix and pain management, so we are going down to one visit a week.

Since it has been two months since our last CT at MD Anderson, the Doc talked about getting a CT at the end of the month so we could have an idea of how the tumor is progressing.


Alan snoozing as his 5th birthday dawns


Waiting for his party


Enjoying his Chuck E. Cheese birthday party with a lap full of tickets


Alan and Chuck E.


Happy Birthday Alan!


Alan is proud of his Birthday Star medallion


We are so grateful to be able to celebrate Alan's birthday!


Post-birthday party

Office visit 11/1

ANC 2271
11/01 11:50

Alan's pain was well controlled over the weekend and he had lots of fun during our staycation at the JW Marriott! The weather warmed up enough by the end of the weekend to allow us to take him to the pool for a little bit of splashing around. We used extra Tegaderm to protect his nephrostomy and g-tube dressings and kept him in the shallow water. Alan loved the water and kept trying to dodge us to get deeper into the water.

After a fun weekend, we came back to the office for a check up. No changes!


We couldn't get a picture of both boys looking at the camera because they were fascinated with the gigantic pumpkin!


Alan loved romping in the hotel bed


Pillows!


Playing Connect 4 at the Range Riders


Kevin gives Alan a kiss


Splashing in the pool


Alan tries to get past Mommy to get into the deeper water

Office visit 10/18

ANC 2900
10/18 14:05

The docs continue to adjust the mix of Alan's TPN after looking at the magnesium levels in his lab results.




Having fun in the game room

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 10/16 and Uncle Peter

ANC 3328
10/16 12:20

It was a fairly comfortable weekend, with a visit from Uncle Peter!  Alan's counts were all good. They'll send the chem test to the lab and we'll see if any adjustments need to made to his TPN. We'll be back for another check up on Thursday.



Uncle Peter with the boys


Showing Uncle Peter the water tables at Morgan's Wonderland

Office visit 10/11

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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

Dancing with Chuck E.

It's been almost two weeks since Alan's big Make A Wish event. The party at Chuck E. Cheese after the elevator ride was the first time he had been back there since we went to Houston at the end of June, and now he remembers how much fun it is to go. He has been asking to go back every day since then, and we'll take him whenever it's possible to do so. He loves feeding the Ticket Muncher and watching the numbers go up on the counter. His favorite game is the Great Ticket Carnival because it has a great token to ticket ratio and the game has a nice big display of points earned.

Part of the "Chucktober" celebrations is an hourly dance with Chuck E. during the weekdays called the Ticket Splash. At the end of the dance the kids sit down and close their eyes, then Chuck E. throws up a handful of free tickets. Obviously Alan can't participate in the scramble for tickets, but the staff have been great about handing a stack of tickets directly to him. Over the last few days he's been noticing Chuck E. parading through the restaurant before each Ticket Splash with the "Follow Me For Free Tickets" sign and the shower of tickets at the end of each dance. Today, he insisted on joining in on the dancing!

That's our boy. He's not going to let anything keep him from living life to the fullest!





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[video- Alan dances with Chuck E.]

Long weekend and Office visit 10/9

ANC 3652
10/09 11:50

We've been dealing with the sudden onset vomiting over the long weekend. We were concerned that it indicates blockage of his intestines again, this time irrecoverable. Unlike earlier bouts of vomiting, these have come on extremely suddenly without warning, like a switch being thrown. Before, we would have some warning signs such as nausea or indication of upset from Alan. Sometimes he would hold his hand over his mouth or hold his stomach and cry "My tummy!". Once the bouts are over, though, he is back in a good mood just as quickly, even asking to go to Chuck E. Cheese when not five minutes ago he was vomiting.

Things were tough this weekend. We were literally waiting until the last minute to decide whether or not to take Alan to a birthday party for two of his little classmates at Morgan's Wonderland. In between bouts of vomiting Alan kept saying he wanted to go out. We finally realized that he could either fight off these bouts of vomiting stuck at home, or while he was out having fun. So we packed extra towels and wipes and headed out.

Doc B thinks that spasms from the intestines or ureter are breaking through the basal rate of pain control provided by the Fentanyl patch, and the pain is triggering the vomiting. Since he is otherwise very comfortable outside of these acute pain episodes, we will try an anti-spasmodic medication rather than increasing the Fentanyl. We'll be back on Thursday for another check up and counts.


Off to a birthday party!


Alan with the birthday girls


Mmmm cake and ice cream!


Beep beep! Driving on the playground


Arranging his tickets for the Ticket Muncher


Playing Peek A Boo while waiting for rockets to launch