Office visit 10/30

ANC 3170
10/30 11:55

Alan's pain is increasing, so the Doc raised both the level of the morphine bolus and rate of the Fentanyl patch up.


Reading with Pastor Barz


Alan stringing his favourite of the Beads of Courage

Office visit 10/25

ANC 3289
10/25 11:02

A quick easy trip to the doctor, so there was time to go to Chuck E. Cheese after!

Office visit 10/24

ANC 5601
10/24 13:50

Alan's chemistry levels are good, so there are no more changes to the TPN mix. After the office visit we headed off to Barnes & Noble so Alan could play at the train table.


Trains!

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

ANC 5366
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

Carpe Diem

Harold made the following post on the Alan's Angels group on Facebook today, but I thought it was worth repeating.

One of the people we met while in Houston this last time was a grandmother who had worked as a nurse in home health and hospice care. The thing she emphasized to us several times over was that the kids who lasted the longest, who had the best quality of life up until the end were those who kept living... ie. kept going out with friends and family, getting dirty with paint, and doing things kids do at their ages. Basically going full throttle until they physically could not any longer.

If you had asked me almost a month ago (the day Alan came home) about how long he had... I would have been hard pressed to imagine him still being with us now. Things were grim at the time, and I was not very hopeful. But almost a month later, he is still here, going to Sea World to see the penguins , watching the roller coasters, and drinking soda...and still wanting to go to Chuck E Cheese! The majority of his days have been good days, laughing and having fun!

And it is all because of you.

Without y'alls support, we would not have been able to concentrate on getting him out there to enjoy life while he can. I am convinced that without that time outside, being.. well... Alan, that he would be much farther down his road than he is right now. His life and our lives have been so much better due to your efforts and generosity.

We will not ever forget what you have done for us. Thank you is not a strong enough phrase.

I want to add that not only did Patricia work with kids in hospice, she has lost an infant grandson and has two granddaughters that are terminally ill. So she spoke to us from deep, personal experience. Because we were constantly at the hospital, we didn't get to know her very well, but when Alan's news spread around the RMH, she reached out to us, and we are forever grateful. Just as we are grateful to everyone who has made it possible for us to spend the maximum amount of time with Alan and the strength to get him out and enjoying life.

Here is Alan enjoying some "Mommy Juice" (AKA diet Coke) at SeaWorld yesterday. We forgot his Sponge Bob hat at home so he got a SeaWorld "2012" hat - more numbers! We can not say "Thank you" enough to everyone who makes moments like this possible.

Office visit 10/5

ANC 3326
10/05 11:05

It was just a quick check up today for counts, which look good!  Alan has gotten over the gummy bear OD so we were soon off to SeaWorld!

Alan enjoyed going on the moving sidewalk to watch the penguins and hanging around to watch the Steel Eel roller coaster zoom past for as long as Mommy and Daddy could stand the heat.


Off to see the penguins and ride on the moving sidewalk


Watching the puffins

A trip to the ER

Doc P sent us to the Pediatric ER just down the hill from us to get a new suture on his IJC line. He called ahead so they knew to expect us. Since he wasn't NPO they couldn't give him anesthesia. The ER doc had suggested giving him some Ativan to calm him down for the stitch. They only needed to do one, but they would need him to be absolutely still. After discussing the situation, we decided to go ahead and sedate him with careful monitoring.

While we were waiting in the treatment room, we were surprised to see Sandy, one of the nurses from Pedi Prep and Hold at the Children's Hospital Radiology department. She had been there the day that Alan was diagnosed over three years ago and has seen Alan through a lot of his treatment. When the tumor first reappeared we started doing our scans at MD Anderson so we hadn't seen her in a while. It was a pleasant surprise to see her again and she couldn't get over how big Alan had grown.

It took some time to hook Alan up to the monitors and prepare everything. The doc wanted to be sure everything was ready before pushing the Propofol since he wanted Alan under for as little time as possible. It took a while to get Alan under - he's used to it which is good and bad. We know it's effective with little side effects. However, since the ER doc wasn't an anesthesiologist, he was being cautious in administering the drug and every time we thought he was under, Alan would fight it off. When he finally fell asleep, the doc worked quickly, but even so Alan was starting to stir by the time they were starting to put the dressing over the IJC line. So much for Mommy's plan to trim his nails before he woke up!

He was awake and alert almost immediately. The doc couldn't believe it, especially given the amount of Propofol he had to use. Since this was a pretty tough dressing change, we agreed when he asked (again!) to go to Chuck E. Cheese. It was the least we could do for him.


Alan in Triage


Is he sleepy yet?


Alan and Sandy


At Chuck E Cheese after

Office visit 10/2

ANC 2403
10/02 12:45

Alan's numbers look good. Doc B wants the Vancomycin to continue for a total of 14 days, so we have a few more days on the antibiotic.  Alan has had some pain over the weekend - we are not sure if it's due to a gummy bear OD (he had about a dozen on Saturday afternoon) or the restart of the chemo? After going over the symptoms with Doc B, we decided the gummy bears were the culprit, so we will continue the chemo. Because of the vomitting, we asked for Aloxi by IV rather than oral Zofran since giving him oral meds can set him off.

After the office, it was off to Chuck E Cheese again!


Alan has discovered that the cable news networks have lots of numbers!


Smiling with Clara and Aurora


Winning tickets is serious business!


Feeding the Ticket Muncher


Ooooh look at this big number!