Boo Bash 2011

Today was time for the American Cancer Society's Halloween party for children with cancer again, now called the Boo Bash! Kevin was dressed at a FedEx delivery man, complete with a FedEx package for collecting his treats. We were thinking of dressing Alan up as the FedEx package, but Alan insists on only wearing shirts with numbers on them right now, preferably a soccer jersey. Luckily, we just got a couple of new jerseys from Auntie Cookie and Kevin's old playgroup buddy John Robert, one of which was orange. What a perfect colour for Halloween!

We didn't see our old friend Panda this year, but Po from Kung Fu Panda fame was there and got high fives from both boys. There was the usual contingent from Star Wars, and new this year was the "Y" from the YMCA and the great big caterpillar from Half Price Books. Kevin was fascinated by "Y" dancing up and down and Alan loved checking out all the letters on the HPB caterpillar. The glowing bracelets were a big hit again this year. Alan would sometimes pause to look at them on his arms.

The boys had fun playing all the games. Alan especially enjoyed the kicking the soccer ball... finally he got to drive to the goal! We got to see a lot of old friends from the ACS and from the HEM/ONC ward at Methodist Children's. They were looking forward to seeing Alan again, though the nurses from Methodist were glad we haven't had to come by for the last year. We were sad that we didn't see Alan's buddy Nicholas. We were hoping that he'd be up to attending.

After lots of fun and lots of snacks, Kevin won a prize for his costume! We had a feeling he was in the running, since so many judges (and volunteers and fellow party-goers) had enthused how cute he looked, especially when he opened up the FedEx package to put in more treats!


Kevin with his prize-winning costume and prize!

Hey, it was Thanksgiving *last* month!

Medically speaking it's a slow day - Doc L and Doc HJ came by with their residents to get consents for tomorrow's surgery.

However, it's been a busy day for visitors. The Fannins came by again, this time to meet Alan and drop off some gifts from their church. We all joined hands as Pastor Fannin said a prayer for him. Mr. O'Brien, the father of one of Kevin's teachers, dropped by with a gift from the Hardy Oak PPCD/RSG/ALE team.

The Miller family also came to visit. The Millers adopted us through the Houston chapter of Candlelighters, an organization that supports families of children with cancer. They spent a Christmas in the hospital a few years ago when their oldest daughter was at TCH, so they know how stressful this is. Their son is Kevin's age and their kids had fun shopping for us. It was such a pleasure meeting this family!


The Miller Family

We could write a post on this blog every day thanking everyone who has supported us and it could never be enough. Gifts, money, time, effort, prayers, good wishes and encouragement - it has all been invaluable! We have also been receiving messages from the friends and families of everyone who has been sharing Alan's story and asking for prayers on our behalf. Everything has given us strength and we wanted to say how much we appreciate it. Thank you!

Weekend Festivities

We got back from Houston on Friday, determined to let Alan have as much fun as possible this weekend. We started off with a trip to Morgan's Wonderland with friends. We wandered around the pirate ship playground and the water cannons at the wharf. There was a trip around the park in the train, then we recharged with lunch. Then we did three circuits around the Off Road Adventure and proceeded to get soaked at the water play.


On the pirate ship playground


Alan loves letters


Alan and his little buddy love the water cannons


The water tables are so much fun!


Alan loves getting soaked!


Water, yay!

It was a fun afternoon and we loved letting Alan run free.

On Sunday, we went to Doc A and P's Christmas party for their patients. Like last year, a motorcycle group from Victoria brought presents handed out by Santa who had arrived on a bike. One of the group had a child who had been a patient of Doc A's and they organized this Santa run every year in his memory. The hotel set up two buffet lines, one which was low to the ground at kiddie height - how adorable! Alan loved going around the tables and up and down the stairs. He was intrigued by Santa and happily tore into his presents, with the help of his big buddy Nicholas's little sister.


Waiting for Santa's arrival


Here comes the Santa...


... and his jolly elves!


Hey big guy!


Kevin and Alan with Santa


Time to rip!


Yay. HexBugs!


It takes a woman's touch...


Alan and his big buddy Nicholas

Helping Hands

We have had so many people asking us how to help out during Alan's surgery and recovery. Honestly, we're not quite sure yet. We are still processing things emotionally and figuring out logistics -some things will depend on how his recovery goes. Collin's mom Emily has volunteered to coordinate any offers of help and be a clearing house/point of contact for what we need as we figure things out.

Thank you everyone who has reached out and offered help. We appreciate the support!

Halloween for Cancer Kids

This was our second year attending the American Cancer Society's Halloween Party for Cancer Kids. Last year Alan had a great time following the Panda, but this year he just caught up in all the excitement. He liked to run into the crowd of legs in front of the stage where Ronald McDonald did his magic show. It made it hard to keep up with him without shoving people aside! He loved the music and did some pretty energetic dancing.


Playing piano in the hotel lobby while we wait for the party to start


Alan loves his treat from Cupcake Couture


Alan with the nurses and Child Life from the HEM/ONC ward


Alan does some crazy dancing


Alan got one bracelet from one of the booths, then charmed the second one from a teenager we were in line with

Working hard

The weather has been beautiful and cool, so we've been taking Alan to a park or playground every day this week - 5 days, 5 different playgrounds. He's been having so much fun running, jumping, climbing and most significantly, playing with other children. This is the work that kids his age are supposed to be doing, and work that he has had precious little opportunity to do in the last 18 months.

When his PT came to see him on Thursday, he was a little resistant to some of the exercises he usually does without protest. When we told her about all the time Alan had been spending playing, she was very happy. While she was a little concerned at first that the tumor might be impacting his abilities, she was encouraged to hear how hard he had been working on the playground. It was more likely his muscles were tired and sore from the unfamiliar vigorous play, and compared to that, his PT exercises were rather boring. Besides, functional activity like romping all over a playground was much better for him than any sit-ups or stair work.

It has been so wonderful to see him so happy. The last two summers he's been somewhat isolated, and I almost cried to see him so excited to run around with other children.


Climbing up and down while Mommy and Miss Becky have breakfast

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[video]
It's fun to run around!
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Look at that big grin!


Alan just had to abandon the playground and climb the rock when these big boys arrived.


It's a long way down!


Not content merely to climb the rock with the big boys, Alan insisted on following them on their walk too!


Alan was a little hesitant about crossing this bridge until he saw a big boy do it. Monkey see, monkey do!

Hosptial hallway hijinx

With VAC all done this morning and the post hydration complete by 1 pm, Alan was getting antsy being trapped in the hospital crib. We also had a lot of hospital personnel coming by for various kinds of testing - EKG, chest x-ray, and echo cardiogram (on top of the ubiquitous blood tests). Daddy came to the hospital after sending Kevin off to school and held him for a while. Alan was tired but wasn't willing to nap. We ended up taking him for a few walks in the hallway of the HEM/ONC ward.

He happily walked around and around, every so often trying to explore another patient's room. He'd look at us expectantly when we reached a door to the rest of the hospital, but no, we'd have to turn around. There was an interior door between the HEM/ONC and BMT wards, and he was pretty tickled when we opened that one for him. The nurses, who hadn't seem him since his last chemotherapy in October, remarked how big he had grown! One nurse said that she recognized me right away but didn't figure who Alan was. The full head of hair probably helped too.

Alan never got to walk the halls before because he was neutropenic and refused to wear a mask. We fudged the rules a bit today - he was going stir crazy in the room and crib, and since he had just received his first chemotherapy he wasn't immune-compromised yet. If he wants to go for a walk on future hospital stays, he's just going to have to learn to put up with the mask.

As things were, it was quite a workout keeping up with him - one of us next to him and holding his IV line up and the other steering the stand with the IV pump. It was definitely a two person job!


We paused during the walk for vitals. Rather than take him back into his room (and the resultant tantrum) we sat him at one of the nurses' station chairs and bribed him with a cookie.


Alan discovered the foot-operated sinks. Water is fun!

Post-Op MRI results

We just got a message from the doctor's office - Alan's MRI results are good! We'll get more details when we see the doc on Friday, but we are so relieved to know that everything is as they expected. We've been a little worried because Alan has been cranky and waking up in the early hours of the morning. Not exactly unusual behaviour for a two-year old, but it was little things like that, in retrospect, which were the first indicators that something was wrong. We're breathing easier now, and look forward to finding out more on Friday!

A visit to Goddard

Last year, when we were in the middle of Alan's treatment, our little friends Jaz and Emily's preschool gave us a big hand by making us the beneficiary of their preschool prom and sponsoring a fundraiser at Baskin Robbins for us. The prom was a big event - there were even TV and newspaper reporters there! As Alan's treatment progressed, they even helped out with Kevin from time to time.

Now that Alan is done with treatment and is looking and feeling so much better than he did last spring, we wanted to visit the school so they could see how well he was doing. We brought a bucket of lollipops and little thank you cards for all the kids and a great big thank you card for Miss Julie, the owner.

Julie, Tiffany and Marissa were so happy to see how active Alan was. He was running around the halls exploring this wonderful new place. We dropped into the room where Kevin sometimes stayed. Alan was fascinated with all the big kids, and after a short time sitting for a story, he was off again. We have a lot of thank you's to catch up on and it was nice to share our happiness with people who had given us their support.


Alan explores the halls of The Goddard School


Alan (completely distracted with a new toy) with Miss Tiffany, Miss Marissa and Miss Julie


Alan is fascinated with a magnifying glass


Alan pauses momentarily for story time

Quiet night, noisy morning

The nurses switched Alan from the epidural to oral and IV pain medication yesterday afternoon. Doc K made it to our room around 6:00 to take out the epidural, which meant the nurse could remove the foley catheter as well. Yay, two less tethers! This meant we were able to change him out of the hot, scratchy hospital gowns and into a nice cotton sleeper. Alan was getting up and sitting on his own, but otherwise not moving too much, so he wasn't getting as tangled in everything as he has in the past.

After getting us excited about eating the chicken noodle soup on Monday, he was back to his old favourites - dry and crunchy. Oh well, it was nice while it lasted. We'll try again. After three doses of antibiotics, the only thing Alan getting through the IV now is fluids and pain medication. There were a few times it was obvious he was in pain, but we tried to keep ahead of that and he fell asleep around 8:30. Without the epidural, his stats were more stable, which meant everyone slept much better without all the beeps and boops from the monitor.

He wasn't too happy when he woke up this morning though. The disadvantage of getting meds periodically is that the pain gets worse before it gets better, even though we try to stay on top of it. Add that to the fact he hasn't had a bowel movement since Sunday morning means he's quite uncomfortable.

He hasn't wanted to sit up and was getting very upset when the gift shop came in to deliver a balloon bouquet from the Jauer family! Between all the streamers and the big singing balloon (Don't Worry, Be Happy!) Alan was distracted enough to relax and fall asleep for a rare mid-morning nap.

When he woke up, he was much happier and was ready to greet Miss Sara who arrived with another balloon with streamers and snacks. Hurray for Nilla Wafers! Alan was a happy boy with one in each hand.


Balloons with streamers, how fun!


A rare mid-morning nap

Locks of Love

Since 2009 was such a lousy year (Dad passing away, Alan being diagnosed with cancer, losing our cat Axel on Christmas morning), I wanted to make to say "Good riddance!" to 2009 and make a fresh start for 2010. So this morning, I went to a Locks of Love salon and chopped of my hair! Locks of Love is a non-profit organization which provides hair pieces to children who have suffered medical hair loss at little or no cost.

A couple of things prompted me to take this course. First, the inspirational Louise Locker who is facing breast cancer with such grace and faith. Louise shared with her Facebook friends when she first cropped, then shaved her hair as she dealt with the side effects of chemotherapy. Second, Becky, a fellow volunteer at the Elf Louise Christmas Project, lopped off her hair after Thanksgiving to donate to Beautiful Lengths, a similar charity. Becky's donation reminded me of my first Locks of Love haircut back in September 2005, when Alan's big brother Kevin was just a few months old. At that time, I was just doing the standard new mom thing of cutting my hair short for convenience. I donated it to Locks of Love so all that hair wouldn't go to waste. Now, with Alan's fight with cancer, the donation has become much more personal.

This dramatic change is a way of making a clean break with 2009 and starting 2010 with fresh strength and determination. It's a way of showing solidarity with Alan and all his fellow fighters, young and old, those currently battling, survivors and angels. We'll be starting the next phase of Alan's treatment in a couple of weeks. First, a simple operation to remove the tumor and then eventually orthopedic surgery with a long recovery. Alan still has a long way to go, but we have enjoyed the last couple of months free of treatment with him so playful and determined.

We wish you all a Happy New Year, and thank you for continuing to following Alan's fight.

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Merry Christmas

We are so grateful for a quiet Christmas at home. Alan enjoyed having his big brother open his presents for him and they played all afternoon with them before going back to playing with last year's Christmas present.

We hope you all have a Merry Christmas!

Office visit 12/21

12/21 12:00
ANC 3056

A quick visit for counts today. Alan's weight is holding steady and Doc P was happy with his counts. We're booked for one more pre-surgery MRI before the end of the year, but other than that and the pre-surgery consult with Doc R, we are free of office visits until after the surgery. Doc P said we should be admitted to the hospital on the 17th for surgery to remove the tumor first thing Monday morning. We're still waiting to get a confirmation of that from Doc R's office.

After the office visit, we went up to the Fourth Floor to take a tin of cookies and a Christmas card to the nurses and PCAs of the HEM/ONC ward and to drop off a DVD for our little buddy Collin who is back in the BMT ward. Everyone was so glad to see Alan looking so good with his soft, fuzzy head and getting so big. We were hoping to get into the last room we haven't stayed in yet during our surgical recovery, thereby completing our tour of the HEM/ONC ward. But Nancy said that surgical patients usually go to the Third Floor - maybe we can make it if there's enough room. We would love to be back with our regular nurses and PCAs.

While the everyone oohed and ahhed over Alan, I popped my head into Collin's room to drop off the DVD. Collin is having a hard time and will have to stay in the hospital over Christmas. Please pray for Collin, his recovery and strength for his parents.


Alan with Nancy and Pam

Thoughts from MD Anderson and more

When we had our trip to MD Anderson last week for a second opinion on the orthopedic surgery for Alan, we were so down by the news we laid low for a while to process the news. Now that Doc P agrees that Alan will be losing some part of his hip bone, we just need to move forward.

The scope of MD Anderson was incredible - an entire complex devoted to cancer treatment. We got a little lost at first, trying to sign in at the Orthopedic Desk before we were redirected to the Sarcoma Center. After meeting with the business office to set up Alan as a potential patient, we found a quiet waiting area. People on the sarcoma support list had warned us the wait would be long - two hours in the waiting room and another two hours in an exam room to see a doctor. They either exaggerated or we were there on a slow day - it was "only" two hours of waiting total.

While we were waiting for an exam room, we let Alan wander around a bit since he had spent so much of the last 24 hour stuck in a car seat. He went up and down the hallways, in one direction towards one set of elevators and the orthopedic center, and in the other direction towards another set of elevators and the dentistry/ophthalmology center. He spent most of the first hour going back and forth, pausing to rub his head against the bushy green plants in the ortho waiting room or making people smile in the dentistry/ophthalmology waiting room. He was pretty tireless, only pausing a couple of times at his stroller to drink some chocolate milk before continuing on. Because this was a cancer hospital with many immune-suppressed patients and the current concern with the H1N1 flu, children under 12 were not even allowed in the hospital building unless they were patients, so we were questioned a couple of times. You'd think with his peach-fuzz head they'd figure out he was a patient.

Once we were finally in a waiting room, Doc D, Doc L's resident, eventually came in to do a physical exam of Alan. She watched him walk, moved and examined his hip joint, and asked us some questions about his history. Doc L finally came in right about the two hour mark from our original appointment time. Even though we were disappointed with the surgery Doc L was proposing, we got a good vibe from her. Interestingly, earlier this week I got a link to an article on fibrosarcoma arising from bone which looked like it applied to Alan's case (a rare form of a rare form of a rare form of cancer - would it be whining to say I wish we weren't quite that special?). It turns out Doc L is one of the co-authors. We need to print it out so we can ask Doc P on Monday if it does indeed apply to Alan.

Harold has had some interesting conversations with some squadron mates who have been through some of what we have been or will be dealing with. One had a son in a spica hip cast at 18 months old - he had many tips to share and some observations on what it was like to have an active toddler suddenly immobilized. His son would cry and cry at first because he couldn't walk anymore, but he eventually figured out how to crawl and even how to stand at the very end - all things we can envision with Alan. Another squadron mate had a son who was diagnosed with a brain tumor and has been cancer free for four years, but not before they were faced with a very grim prognosis. We're very grateful to them for sharing their experiences with us.

Today, Alan went to Kevin's preschool for a Christmas party. Alan had a grand time - he loved getting into the middle of the crowd of big kids, dancing and laughing. The kids adored little Alan with the soft fuzzy head. So many wanted to hug him and rub his head that by the end of the party, he was going around trying to rub their heads!

We were happy to see Kevin's teacher, Ms. Anna, back after her surgery. She told me that Alan was her hero - after watching him run around the playground during the Pumpkin Patch Party, she figured if Alan could do it so could she!


Alan and Ms. Anna

We have a ways to go yet - we won't be seeing Doc R to go over Alan's first surgery until the middle of January. Doc P was not concerned about the delay, so we'll try to be patient.

Doc P's Christmas Party

Today we went to a Christmas party thrown by Doc P and his office with the help of a local Harley Davidson group for the seventh year in a row. Santa and elves arrived on hawgs along with a big red trailer full of presents. The group had done fundraising through the year to raise almost $20,000 for all the presents!

A local news crew was there to interview Doc P and show all the festivities, including a little girl, now six years old, who first became a patient of Doc P when she was only four months old! Our whole family had a quick cameo in the broadcast. Alan had a grand time running around, loving exploring the crowd. He had a good nap today!


Santa arriving on a Harley


More elves




This was the shot that was broadcast on the evening news.


Doc A gives Alan upside-downs!


Alan with Doc P in his Harley jacket