Merry Christmas

We want to thank everyone who has wished us a Merry Christmas and all the kind thoughts and acts during this holiday season. When we brought Alan home in September, we had very little expectation of being able to enjoy Christmas with him in any way. Even dealing with his increasing nerve pain over the last few weeks, we have been looking forward to this. Our first day out of the spinal, Alan was still feeling the same level of pain and we were not comfortable pulling back on the base level of Fentanyl. But after we started the antibiotics and he'd had a few large bowel movements he started feeling better. He went longer and longer between boluses, to the point that the timer we were using reset after 24 hours, starting from zero again. Sunday afternoon we decided to scale back his basal rate by 10% and he continued to do well.

Doc E has said that the results should be felt immediately, but talking with him yesterday, he also said he is used to dealing with adult patients who know and can articulate between the original pain and the pain stemming from the procedure itself. We are hopeful for the next few weeks and Alan is comfortable, which is a great Christmas present!


Christmas stockings for Kevin and Alan


Alan naps with all the stockings!

A trip to the ER

Alan hasn't been feeling a lot of relief from the spinal on Thursday yet, and late last night/this morning he experienced high fever and vomitting. After consulting with the Doc who was concerned about a possible infection from the procedure, we took him to the nearby pediatric ER.

They took a blood culture and started Alan on IV antibiotics. Since we had experience giving him antibiotics at home, we came home this morning for some sleep. After coordinating with Doc B, our home infusion company brought a delivery of Vancomycin, IV Benedryl and Cefepime. We are back on a schedule of antibiotics every eight hours.

He's feeling better already.

Hoping for some relief

Today was Alan's neurolytic lumbar puncture. We had a last minute change in venue - instead of the Children's Hospital we were going to an outpatient surgery center just down the street. Apparently the hospital was not used to doing the procedure and were reluctant.

After getting checked in and getting Alan set up on a gurney, we started going over different aspects of the procedure with the anesthesiologist, the nurse and Doc E. The anesthesiologist will start with a little Versed to relax him, put him to sleep with Propofol, then give him gas to keep him asleep since they need to keep him absolutely still during the procedure. When the nurse came by, we realized that since they were going through his back, since this procedure is essentially a lumbar puncture, they would need to remove the nephrostomy dressings. We asked if they could wash and redress them and restitch the suture on one of the tubes that had come out.

Doc E came to see us to go over any last minute questions. Nothing had changed. We were willing to live with the downsides of the spinal since we are in fact living with them to some extent already. Doc E asked for permission to write a paper on Alan's case if the procedure worked, since there is so little literature on the subject.

The procedure went quickly and smoothly. the longest part being the waiting for the alcohol to sit and do it's job. We soon met up with Alan in a recovery room where he snoozed away on the gurney.

Now we just have to wait and see if it worked.

Fundraisers for the Alan P Sanders Pediatric Sarcoma Research Fund at MD Anderson

So we were given a pair of Spurs tickets (Scott King, thank you so much!) during Alan's Make A Wish event that we will obviously not be using. They are for the game against Dallas this Sunday night, December 23. If I'm reading the tickets correctly, they are for Section 125, Row 33, Seats 9 & 10. We'll give them to the person who pledges the highest tax-deductible amount to the Alan P. Sanders Pediatric Sarcoma Research Fund at MD Anderson by Friday Midnight, Central Time.



We have also been given "Cure for Kids" spirits sticks in childhood cancer awareness gold by Lisa at Spirit Monkey. If you have elementary school aged kids you may be familiar with these. We'll be selling these for donations to the Alan P. Sanders Pediatric Sarcoma Research Fund at MD Anderson.

Consultation with the pain doc

We met this morning with Doc E, an anesthesiologist who works in pain management. He went over some of the options for managing Alan's increasing nerve pain. If we had an epidural, that would add another line into him, along with another dressing that would need to be changed regularly and another pump. Because this pump would be handling a local anesthetic as well as painkiller, Doc E has had difficulty finding home health care companies that are willing to manage it.

The second option is a neurolytic lumbar spinal - basically a lumbar puncture during which they would inject alcohol into his spine to "burn" the nerve. The advantage of this option would be that there would be no additional lines or equipment. It may wear off over time but could be repeated as necessary. The disadvantage is that it is not done in children often so there is very little data on dosing levels for the alcohol. Doc E is very confident in his ability to do the procedure, and frankly there is no one else in town that is even remotely qualified (or willing) to do it. He freely admitted that if we decide to go with this option he would be consulting colleagues at the Children's Hospital in Tennessee and doing further research. We also put him in contact with Doc H2 so he could consult with the pain docs at MD Anderson who had suggested a similar procedure this summer.

The decision was fairly easy to make. The spinal would leave Alan less encumbered and if it worked would allow us to enjoy Christmas and maybe make the New Year's Eve fireworks - goals that Doc E said were very attainable. We considered the downsides of the treatment - loss of mobility, bowel and bladder control were things we are already dealing with. To us, the biggest downside is if it doesn't work since Doc E said he would want to be conservative (because dosing information for patients as small as Alan is not well researched).

Doc E's office will start working on scheduling the procedure. Hopefully it will be quick since Alan's pain is getting more and more difficult to manage.

CT

We went into the Children's Hospital for Alan's CT scan today. Being NPO was not a difficulty anymore since he's on TPN now. We wanted to let Alan stay awake since he had managed to do so at MDA in September and that would mean a quicker trip to Radiology today. The anesthesiologist set him him up with Propofol just in case and we ended needing it after all. In September, Alan was fascinated with the CT machine and it held his attention long enough for them to take the scan. This time, he was too excited and curious and kept fidgeting around to get a better look. Even with the sedation, things went smoothly and after a snooze in the PACU we were on our way.


Playing in Pedi Prep & Hold


Going for a ride to the CT


Checking out the CT equipment


Recovering in the PACU

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!!!

Transfusion

As planned during yesterday's office visit, we came into the Children's Cancer and Blood center for a blood transfusion before the Thanksgiving holiday.

Kevin came too so we could all spend time together. Alan once again chose to hang out in the playroom, watching the Sesame Street numbers DVD and going through all the different toys. Near the end of the transfusion he was getting a little tired, so we brought  one of the kiddie recliners over so he could sit back and watch TV while we finished up.

Office visit 11/20

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11/20 11:50

Alan had a low hemoglobin level, so will come back to the Medical Center tomorrow to get a transfusion at the Children's Cancer Clinic.

Office visit 11/15

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11/15 11:30

More than two months since the CT results and coming home, we have settled into a routine and we have indulged in a little denial. Today though, we had a frank conversation with the Doc, asking for a reality check. Realistically, Alan's tumor is progressing. We are starting to see it in the small of his back. We got a new prescription of Lactulose to keep him comfortable, but we really need to prepare future arrangements.


Napping in Mommy's lap

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.

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

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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 11/6

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11/06 11:55

Napping with Daddy

Another stitch

While getting his IJC dressing changed, we noticed that the other suture had come loose. We had already gone to the ER back in October to get a new suture put in - now it was time to replace the other side. The doc in the ER this time was not familiar with propofol so he used ketamine instead. It still took a lot to get Alan sedated enough to replace the stitch to stabilize his line, and unlike the propofol, it took Alan longer to wake up from it.

Office visit 11/1

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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 10/30

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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

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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

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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

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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.