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.

Office visit 10/16 and Uncle Peter

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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

A better weekend and office visit 9/24

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09/24 13:15

The TPA in the nephrostomy lines on Friday did the trick. On Saturday morning, we were a little concerned at first, since the output was so bloody. It turned out that was just the result of the TPA loosening the blood in the line. Chris had come by again this morning to take a blood draw. They wanted to be sure that we were getting a correct dose of the antibiotic. By Saturday afternoon, the output of the lines was clear and in quite large amounts. The backup on the tubes may have caused some of the pain on Friday morning. Between flushing the lines out with saline and TPA, increased hydration from the new TPN formula, and a weekend on the Vancomycin, Alan was feeling much better! We even made it back to Morgan's Wonderland on Saturday and Sunday for more fun.

Auntie Karen came by with a special duvet cover. Friends, neighbours, and angels had been dropping off team jerseys with numbers on them with her, which she turned into a duvet cover with numbers all over for Alan. The number blanket has completely supplanted his old favourite letter blanket now!

The docs were very pleased with Alan's progress this weekend. The results from Saturday's blood draw were in and the concentration of Vancomycin is good. They still want to see us Wednesday and Friday to monitor his situation.



"Catching the candy" with Kevin and Daddy


Alan fell asleep, all the better to get his hand prints on the jar.


Checking out Daddy's game


At Morgan's Wonderland again to "catch the candy"


Bubbles with Auntie Karen this weekend


Checking out his awesome number blanket


So nice to sleep under

Office visit 9/12

09/12 17:25
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Today was our second full day home, and Alan was ready to go out and about. Miss Krysia came to visit and blow bubbles at Alan's command. Alan was showing off all the numbers on his throne, but when we started gathering things to head out to take family photos, Alan recognized the signs and threw aside his blanket. He was so eager to get out of the house he used his hands to start scooting out of his throne towards the garage door. He was ready to "Go, go, go!"

After the portrait session, we headed over to the Medical Center to see Doc P. He wants to see Alan twice a week to check on counts, since we will be starting him on a course of oral cyclophosphamide. He is good to go to school as much as his energy levels and white counts allow and is good to go to the beach one more time. He introduced us to his new partner, Doc B, who is fresh from a fellowship at MD Anderson.

After the visit, Alan was very tired but ate a few fries and asked for "ice cream/yoghurt" AKA frozen yoghurt at our favourite place, So Sweet. He was asleep when we pulled up but when we asked him if he still wanted his "ice cream/yoghurt" he woke right up and was bouncing by the time we got in. After the treat he was still pretty tired and went right to bed when we got home. We started the palliative chemo after he was asleep since we are able to crush the pill and put it through his G-Tube.




Miss Krysia blows bubbles


Childhood Cancer Awareness Day at the boys' school. One of Alan's classmates and his big sister wear gold ribbons


Showing Miss Krysia all the numbers


Where's the bubble Miss Krysia?


Time for vitals


Counting down the numbers


Raising his shirt for a blood draw, but he doesn't have a port anymore!


Time for ice cream/yoghurt!


Yum!

Learning curve

Today we had our first visit from Chris, our home health nurse. He did a basic exam of Alan and we changed the dressing on his IJC. Chris also verified that we knew how to prepare and change the bags and lines for Alan's saline and TPN. Doc M2, the home health and hospice physician, also came by to see Alan and introduce himself.

It was a busy day for visitors. Miss Becky came by to give Alan kisses and see how he was settling in. Some of our neighbours came by with an awesome shirt they had made for Alan. Finally, representatives from Make-A-Wish also came to do an intake interview and get information to pass on to the central office for Alan's wish. They brought a cool wand filled with glitter and stars for Alan that we dubbed "The Wish Wand".

After barely a day of handling Alan's equipment, fluids, meds and lines, we have come to the conclusion that we need more hands. It's a steep learning curve, even after three and a half years of watching Alan's care closely. We have always admired and appreciated Alan's nurses, but now we think they are superheroes!



Ahhh, asleep at home!


Miss Becky had to go through the balloons to find Alan's head to kiss


Colourful!


Bubbles!


Asleep at his throne


Cool t-shirt dudes!


Make-A-Wish

Getting ready to head home

Alan slept well his last night in the hospital except for one pain wave at 4 am, so we pushed the button on the PCA. He vomited around 5 am, but fell asleep after having the bed raised so he could see his reflection in the window. Because of the returning pain waves we decided to keep the PCA so that the demand button is available for morphine for now. Alan's stomach may have been upset by oral Dilaudid on an empty stomach. That meant nurse Sarah had to scramble to get orders written and a PCA pump delivered to meet us at home and getting in contact with Doc P back home as soon as the office opened so he could "own" the pump and prescription. We will have syringes of morphine for the ambulance ride home and Sarah was also arranging a pump for feeding during the trip.

Nurse Sarah had not only customized Alan's bolster with a crown with his favourite rainbow beads on the tips and the letter A, this morning she painted the crown and the letter A and wrote the numbers 0 to 9 on the back rest so he could have all numbers. She also had rest of the Beads of Courage he had earned at MD Anderson gathered.

Miss Becky, Miss Cookie, and Miss Aimee had come to help with the packing and discharge since Daddy had gone home last night to make sure everything was ready for our return home. It was a hectic morning getting things gathered up, changing his dressings one more time, and making sure all the medical orders were in place. There was a farewell party scheduled at 12:30 - Alan had been here at MDA so long and had charmed so many people that they wanted to give him a really big send-off. Along with his doctors, nurses and aids on the floor, there were also several of his therapists, Miss Sheila from Child Life, Miss Chelsea our social worker, our case manager, the chaplain, and several of the shuttle cart drivers from the skybridge.

Alan rang the bell and was presented with a certificate and balloons, including a great big Sponge Bob balloon that everyone had signed. While we won't miss being in the hospital, we are going to miss all these wonderful people. After some tearful good-byes, the driver and medic from the ambulance were there for our 1:15 pick up and the ride home.


Last sleep at MDA


Darci brings the last of the Beads of Courage earned at MDA


Miss Linda, Mr Ron and Miss Fairy came out to say good-bye


Alan comes out for his farewell party


We will miss all the shuttle cart drivers, who always had a smile and a wave for Alan on our walks


Gathering to say good-bye


Ringing the bell


Mr AJ presents Alan with the balloons


Miss Chelsea presents Alan with a certificate signed by all the staff


Nurse Shelby came on her day off for one more high five (ten, twenty, thirty....)


Alan loaded up onto the ambulance (Sponge Bob yellow!) stretcher


Alan was handing out his thank you cards like candy!


One more ride on an MDA elevator


Up we go!

Last weekend

This is our last weekend at MD Anderson before heading home on Monday. On Saturday, we took Alan on a ride on one of the shuttle carts on the Skybridge. Since he didn't need a basal rate of morphine we are able to unhook him from the IV stand for short periods. The Sponge Bob back pack that Miss Kathy gave Alan back in July has come in handy for these adventures, holding his nephrostomy bags and the G-Tube while he is out of the bed and wheelchair.  Alan was quite excited when he saw we were going to go for a ride on one of the carts, throwing the Sponge Bob blanket aside and trying to get out of the wheelchair on his own.

After the ride we concluded our walk, getting back up to the 10th floor to play Bingo one more time. Alan wanted to right up front with the Bingo number dispenser, and he got to call out some of the numbers. He was feeling pretty good, so we headed up to the Observation Deck to test out the bolster that Miss Lindsay made for him, snagging a box of fresh popcorn on the way. After some adjustments, we decided we would need the bolster to be another layer higher and to use one of the pieces of foam cut out to make a backrest. Nurse Sarah will take care of it tomorrow once we get another piece of foam from Rehabilitation.

Once we got back from the Observation Deck it was time for a blood transfusion.


Sleeping in


Waiting for the shuttle cart


Ready to go!


Alan and Miss Fairy


Hurray!!!


Bingo!


Testing the bolster


Comfy!

On Saturday night, Alan woke up twice with significant pain and vomited, so much that he needed a nursing bolus of morphine. Alan was subdued on Sunday morning, falling asleep during the walk and not wanting to ride the shuttle again. Miss Becky and Miss Cookie had arrived from home to help out while we discharged from the hospital and checked out of RMH for the last time.

Nurse Sarah added the third layer and a backrest to his bolster, and then tricked it out with a crown tipped with his favourite rainbow beads from the Beads of Courage and the letter "A" for Alan. Now it's a throne!


Going for a walk with Miss Cookie and Miss Becky


Nurse Sarah made a crown for the back of Alan's "throne"


Anna brings another batch of beads


Alan snuggling with Miss Cookie and wearing one of his favourite rainbow beads on his head


Alan earned so many that Sarah had help bring some of them in a separate batch


Beads of Courage earned at MDA from 2010 to June 21, 2012


Alan's throne


Painting one more time