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]

Harold shaves with the 46 Mommas

After the local San Antonio event for St. Baldrick's in March, Judy started looking ahead to the national St. Baldrick's event for the 46 Mommas Shave for the Brave to be held in San Antonio at the end of June. One of the organizers was Lisa, another San Antonio mom who lost her daughter Rayley to a brain tumor. Rayley was an Honored Kid on the St. Baldrick's website and was chosen to be honored by Coda and Wyland when they first started shaving six years ago.  Coda and Wyland were the ones to introduce us to St. Baldrick's three years ago when they asked if they could shave in Alan's honor, and were ultimately responsible for us meeting Lisa.

Though the weather did not cooperate and we couldn't hold the event at the Arneson River Theater as planned, the shave went smoothly enough that we were able to include two groups of last-minute shavees. Harold jumped at the opportunity - he had thought the event was just for moms, and though the focus is on moms, there were plenty of siblings, dads, advocates, survivors and supporters both male and female joining the eponymous Mommas as Honorary Mommas shaving.


Before, During, and After Harold's Shave

It was a great opportunity to meet other cancer families, especially other Angel Moms. One was Carla, an almost 40-year survivor of childhood cancer who now fights for all the kids. She has a large collection of bracelets, to which has been added a Team Alan's Angels bracelet.


As one of the Mommas said, Carla bleeds gold

It was an amazing group of people, coming together from all over the US and Canada to fight childhood cancer. Some have been with the 46 Mommas through all four years of their campaign, some were first-timers like us. It was a wonderful community though, and one we look forward to being a part of going forward.

Stay tuned for word from Harold on what he plans to do with this bald head and other exciting news about our relationship with St. Baldrick's!


An amazing group!


Harold shaving


Kevin takes pictures of Harold shaving, thanks to the Pablove Foundation Shutterbug program


Kevin as a paparrazzo


Canadian Mommas!


Harold and Kevin with Miss Ginger, Lisa's mom, post-shave



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[video - Harold Shaves with the 46 Mommas 2013]

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.

Farewell Summer

One of the silver linings of our long stay at MD Anderson this summer was the privilege of meeting an *amazing* young woman, Summer Dale. Even while she was fighting her own battle with cancer, she still took the time and effort to seek out and comfort other kids in the same boat. The result was Team Summer and $50,000 raised to help other kids with cancer in less than a year.

We were so sorry to hear that Summer passed away tonight. It's hard to believe that barely two weeks ago we were celebrating the fact that she was able to buy her dream car. Our hearts are breaking for her mother Lynne and the rest of her family. God bless that beautiful young woman you raised.

Twelve weeks

Today marks twelve weeks in the hospital, though with the help of the doctors, nurses, social worker and case manger, we are planning our escape after the weekend. Mr. Alex, a dear friend from Canada, was on a business trip and extended his Houston layover to spend the day with us. Miss Becky came to visit again, in time for the new Team Alan's Angel's bracelets! They got to be the first Angels to wear the new bracelets, and Miss Becky took half of them back home. Summer and her mom offered the bracelets to us, just as they had been offered to her at the beginning of her fight. Half the proceeds will help Summer continue her mission to connect with and cheer up other kids with cancer. Just scroll down and look for the link for Team Alan.

Alan walked with his PT Mr. AJ again, while Miss Aimee followed along to put the number cards in his back pack. Then it was off to give Mr. Alex the grand tour of MDA. Alan was greeted by the drivers on the sky bridge and we confirmed we would be taking him for a ride on one of the shuttle carts this weekend. We ended up on the observation deck, where Mr. Ian came to make more number caricatures for Alan. He was pretty tired out from walking this morning, and though he fought it, he couldn't last all the way from 51 to 60. Mr. Ian whipped out the last two so Alan would have a complete set from 1 to 60 and a couple of super big numbers to boot!



Walking with Mr. AJ


He loves being mobile


Another card for Miss Aimee


Choosing stickers


Admiring his rewards


Miss Becky and Mr Alex are the first to get the new Team Alan's Angels bracelets


More numbers with Mr. Ian on the observation deck


Too tired to make it all the way to 60


Going over all the numbers

Recovering weekend

Alan was mostly quiet Friday night, with a poop at midnight then settling back to sleep. Since the first cycle of chemotherapy finished yesterday the TPN is going through one of the PICC lines instead of his port. He had a mild fever last night - hopefully between the minocycline lock and the fact that we are no longer infusing anything through the port we can lick that infection.

Saturday morning we went down to Rehabilitation to see the visiting therapy dogs. Alan had a small bout of vomiting before we took him down. We hope the nausea will start to ease about a day or two after the end of chemo. There were a lot of big dogs this time and though Alan enjoyed watching them he didn't want to play. We'll try again next weekend. One sign that Alan is returning to normal is that he has started asking for specific soccer jerseys to wear or hold again. Not only is he asking for particular numbers, he is also asking for certain color/number combinations!

He is definitely feeling discomfort while pooping, even with all the laxatives, but feels better after being cleaned up, even if he doesn't like the process while it's taking place. Now that the first cycle of chemo is done Alan got a shot of Neulasta, a long-acting version of Neupogen (which means only one shot!).

Summer and her mom came to say good bye before they headed home. We were happy to see that Summer was walking on her own! Without the walker, Alan was much more charming to her and they had a fun visit. They popped bubbles together, Alan demonstrated some of his new toys, and Summer snapped self-portraits of them on her phone.

Doc H2 was on call Sunday morning so he came by with the other docs on rounds. The primary goal right now is to clear the infection from his lines before we try to find another solution for Alan's pain management. IV morphine is the main thing keeping us inpatient in the hospital since the other treatments can be managed on an outpatient basis. Overall Doc H2 is happy with the slow but steady progress. Right now Alan's treatment is about buying time - time to find new treatments, time for him to grow so we have increased surgical options.

We took Alan on another long walk on the sky-bridge, looping around twice by cutting through the Picken Tower. When we got back Alan played on the iPad in the 10th floor family room then it was back to his room for nephrostomy and G-tube dressing changes. He was pretty tired out by the process so he fell asleep soon after the dressing changes.


Alan checking out Udon


Alan and Summer


Alan and Summer pop bubbles


Summer taking pictures


Playing with his ABC board


Throwing pennies in the fountain


Dinosaur stickers post-dressing


Sleepy!

A train day

Alan slept late again this morning. He slept well except for a late night poop. He vomited during the change but was able to continue his feed after the cleanup. Interventional Radiology called last night - the IR doc who originally put in Alan's G-tube wasn't happy with how the t-tack looked so he wants to re-suture the g-tube. It can be done bedside but not for a pediatric patient. Since he needs to be sedated, we probably won't be able to get in to have it done until Friday, just in time for dressing changes. Tonight, we saw that some urine was leaking out of the right nephrostomy tube, wicking down the tube past the Tegaderm dressing and collecting in the back of his diaper. Since the gauze dressing seemed dry and he was going to head down to IR tomorrow morning anyway we decided to keep a close eye on it through the night but otherwise leave it alone.

The docs are very happy with his pain management but still need to figure how to knock out the infection. The docs from Infectious Disease are considering options for the port other than total replacement. Doc H2 and the Attending doc want to avoid that if at all possible because of the time it would take for Alan to recover from the surgery. ID suggested "locking" an antibiotic/alcohol solution in the port for several hours a day (a similar procedure to putting TPA in his line to get loosen a clot) for seven days. The head of ID at MDA has pioneered the minocycline lock technique for getting rid of staph infections in catheters.

Alan had another quiet day as we are in the last day of his two-week Ifosfamide infusion. We had a visit from his neighbour, fellow cancer fighter Kyle in the room next door. We have been chatting a lot with his mom Laurie so it was great to see Kyle up and about.

Since Alan has been playing more, we brought his travel train set in from the car and we got some big smiles! He had fun arranging the tracks on his tray but the activity tired him out pretty quickly. Another baby step forward...


Trains and tracks!

A busy weekend

Alan had a fever Friday night so they docs added a new antibiotic today in addition to Daptomycin, which is good for the infection in his blood. Tigecycline will take care of the infection through the rest of his body (like his intestine and nephrostomies tubes).

Saturday morning, Alan got to go to Rehabilitation downstairs to see therapy dogs Tux and Cowboy. Alan loves dogs so much we hoped he would get excited. He's been through so much and is still dealing with pain, so he wasn't as perked up by the dogs as we hoped he'd be. He threw a ball for Tux and seemed to enjoy watching Tux and Cowboy play. We'll take him down again next Saturday.

After seeing the dogs, Alan wanted to take a long walk . We wandered around the empty halls of MDA for a while and returned to the family room on the 10th floor where Alan was fascinated by an Olympic soccer game. After getting back to his room, we found that he did a very small poop . We felt a lot better since at least now we know things can move all the way through.

He slept reasonably well Saturday night. There were still waves of pain still coming but were much shorter. We took another walk Sunday morning, meeting Summer again in the hall on our way out where she shared her Sponge Bob blanket with Alan.

Coming back from the walk we noticed the bed was wet, and so was the sheet lining the wheelchair. Upon closer inspection, the left nephrostomy dressing was soaked with what looked like urine. We changed the dressing and we saw that the tube was kinked. Our nursing aid noted that the volume she emptied out of that bag was significantly less than normal. The urine had probably backed up and spilled out. Once we unkinked the tube the bag on the left side started filling again. We changed the right dressing too so that they dressing changes would still be on the same day.

The docs added Aloxi, a new long acting nausea medication, and Emend, for delayed nausea, to replace Zofran. Hopefully that will help with Alan's vomiting. They also added Lacutolose in addition to Senna to help with bowel movements. Since he finally had poop during our walk Sunday morning and ended up having four poops that day we were feeling a lot better.

On Sunday afternoon Miss Angela and her Aunt Mary came to visit and brought presents along with mail from home. More bubbles and a slinky and more! Alan had fun and it was so nice to visit.


Tux even gets his own ID badge!


Watching Olympic soccer


Cheering the players on


Alan and Summer - check out the cool Sponge Bob blanket she lent him for his walk!


Miss Angela demonstrates the slinky


Ooooh slinky!

Six weeks

It's Friday, week 6, which means it's time for the PICC, nephrostomy, and G-tube dressing changes. The nurses put a new needle in the port and a new dressing when the TPN was hung in the evening.
We stopped the feed this morning because the docs and nutritionists had it ramping it up every 8 hours automatically and Alan was giving indications that he was uncomfortable. Alan has never been good at starting with a high volume feed (back in the days we had NG and NJ tubes) and with his stomach and intestines unused to digesting food since he has been getting TPN over the last few weeks, it will take some time for his body to adjust. The glutamine supplements will hopefully help with that.

We restarted the feed back at 5 ml/hour rate tonight since he seems to have gotten past the nausea and gagging this afternoon but there was still no poop today, which would have made us feel better about the Pediasure making it's way through his system.

We took Alan for a walk, swinging through the cafeteria to grab some lunch. In the checkout, Alan pointed to a SnackWell chocolate cookie so we got it for him. Not that he ate it, but he had fun holding it for the rest of the walk! We're just glad he was interested in a food item.

When we got back from our walk we got to meet an amazing young woman named Summer Dale. She is a teen who was diagnosed with a Sarcoma last October. A family friend made up a batch of 'Team Summer' bracelets, with half of the proceeds going to Summer's medical expenses and the other half for her to donate as she chose. She wanted to use it to directly help other kids with cancer, to let them know they were in this together.

Summer had seen Alan around the halls of the Children's Cancer Hospital here at MDA and she wanted to do something for him. Through the nurses, she found out that we wanted to take Alan to Moody Gardens when he got out of the hospital to check out their Rainforest and Aquarium Pyramids, so they gave passes and gifts cards to our family to make the trip. We appreciate the gift and loved the chance to connect with another family dealing with cancer. They have set up their website for other families to sell their own "Team" bracelets and want to give us "Team Alan's Angels" bracelets. We love the idea that we could help other kids with cancer!



Snagged a SnackWell in the cafeteria!


Meeting Summer

A holiday from radiation

We have the day off from radiation treatment thanks to the Independence Day holiday. In fact, Doc H2 came by without an entourage this time as the students had the day off too. He has no changes for us, other than authorizing another enema to help things along.

We did have a visitor though, Mister Luis, whom we had met at the San Antonio St. Baldrick's event this spring. Luis lost his son Jason to cancer in March 2011 and wanted to come by to give us some support. We hope Alan's Angels will also support Jason's Dream, a non-profit in Jason's memory to help help other families facing pediatric cancer. It was nice to talk with another parent who has been through this battle.

Auntie Joys also arrived from Vancouver today to help out!

Warning: Kung Fu Panda 2 spoilers!

Since there is a break from the news on Alan's treatment, we'll share a few smiles. The room as a PS3 that can play DVDs, and though Alan has watched some Sponge Bob and the movies Rio and Madagascar, it has pretty much been non-stop Kung Fu Panda 2 since we got into the hospital. Luckily it is part of the hospital's On Demand catalog but we are pretty much on our way to having the entire movie memorized. Alan definitely has some favourite parts, including the sheep that tells them the way to the rest of the Masters in prison and when Master Crane flaps his wings to push the the boats to block the way to the harbor, he always calls out "Angry Bird!". For some reason, he always wants to hold his "fire truck" when Gongmen Tower falls over. Our only saving grace with the repeated viewings is that Alan lets us get through the end credits before he demands "Panda!" again.


Alan and Mr. Luis

World Wish Day 2012

Today we went to Morgan's Wonderland to celebrate World Wish Day. Though Alan hasn't received a wish yet, we went to cheer on Doc P who was being honored for his work as a medical partner and volunteer. As a pediatric oncologist, he obviously knew a lot of wish kids and they joked that the opening ceremonies had to be delayed because Doc P was busy hugging everyone.

Grandma had arrived this afternoon to take care of Kevin while we're in Houston for Alan's appointments at MD Anderson, so she was able to come and play with the boys and meet some of the people who take care of Alan. It was fun to see some of our nurses out of the office, though it took a second look to recognize some of them without their scrubs! We also got to see Nick's little sister and parents for the first time since he passed away in the fall. There were a lot of hugs exchanged - we miss Alan's big buddy and will be lighting a luminaria for him at the Relay For Life on Friday.



Doc P accepting the Trooper Award


Alan cruising the amphitheater after the opening ceremonies


Alan all wiggly with Doc P


Getting ready to explore the park


Dropping coins in the wishing well


Wave to Mommy, Grandma and Kevin!


Kevin taking Grandma for a drive.