Breakfast at Cora's

Layne was able to meet with his hockey hero Theoren Fleury almost a few weeks ago. I did not go with him as I was down in the states on a last minute trip with his sister, dropping off his brother/sis-in-law at the airport. I was able to get almost all of my christmas shopping done :) Rusty and his nephew Brock were able to take him and were invited to the breakfast. Because I wasn't there I had Layne fill us in on what happened!

"Theo Fleury has been my hockey hero for my entire life. When I was a little boy, he was my hockey idol, I wanted to be just like him. I was drawn to him because of his size (being small) and his hard work attitude that made him successful throughout his entire hockey career. A highlight of my life was when I attended his hockey school as a young boy. At the end of the week of hockey school, there was the “Fleury Cup.” My team ended up losing the game and I was devastated. When I went back to the dressing room, I was crying. Fleury’s wife noticed that I was crying and she told me that she had something special for me. She went out of the room for a few minutes and brought back Theo’s Stanley Cup ring and gave it for me to wear. It was very cool! Fleury was an excellent hockey player and even a better person. While I was in the hospital for the second time, my sister-in-law Paige, wrote a email to Fleury and explained to him the situation. His secretary got back to her right away and said that Fleury would be happy to meet me. It was arranged that we would have breakfast on November 23! It was really exciting to have something to look forward to while I was recuperating from surgery. The day finally came and it was fantastic. We ended up going to breakfast at Cora's in Lethbridge. We all sat down (Theo, myself, Brock, Rusty, Theo’s girlfriend and his assistant) and enjoyed nice conversation together. We talked about his days with the Flames and the infamous World Junior hockey game where he jumped on the back of the Russian and player. Brock was also able to get some good hockey tips from Theo Too! Theo was very kind and showed sympathy toward the situation and said that in times of darkness, you need to stay positive. Theo was a great hockey player, but even a better person! Thanks again Paige for setting it up!!"

Signing Layne's book

Theo tweeted about Layne after their breakfast

Layne's Nephew

Since then Layne has had another round of chemo. It went well.  He again had pretty extreme diarrhea but we were able to manage it. The night after Layne meet Theo, Blake started to have his abdominal pain again. I was going to take the boys up to Edmonton after Layne was finished his round but decided to take them up the day he started because we were up all night long for 2 night again with Blake. This way Layne's Mom and Rusty and Sister were able to help him and I was able to get help with Blake from my Parent's and Layne didn't have to worry about him and get good sleeps. (Of course he still worried but was able to sleep and get the rest he needed :) ) During this round of chemo Layne started to have the same spot on his abdomen hurting the same as before when he had the small bowel obstruction. Thankfully he had no other symptoms and has been able to pass gas and have bowel movements regularly. But he has developed a bulge on the right hand side of his surgery scar and could hardly stand up it hurt so bad. For the last week he has been complaining that it feels like stuff stops there and gurgles and bubbles. It finally clicked just a few nights ago that he has a hernia! We called the office of the surgeon who did his last surgery to see if we could get in to get it assessed and see if that was actually it. Surprise, surprise, nothing can be easy. His assistant said they have no record of Layne in their system because he was admitted through emerg and not through surgery when he was last at the hospital, so Layne had to make an appointment with our family doctor to get a referral. He thinks it is an atypical hernia, based on it's location. It is in behind his abdominal muscles so he couldn't get a good feel of it, but he says based on all other symptoms it sounds like it is one. So at this point we are assuming it's a hernia and are still waiting to get an appointment with the surgeon. Makes me mad how he has a post operative complication and you can't get in for a follow-up. We then called the surgeon who did his original surgery, his assistant was able to speak to the surgeon and he said most likely they wouldn't have to do surgery again until after Layne is done chemo, and even though Layne should be seeing the other surgeon he would see Layne to assess it. We are still waiting for an appointment there too. It looks like we won't be seen until the new year. We will see who can get us in first, but it would be nice to stick with the surgeon who did his first surgery,  as he will be doing all of his scopes in the years to come. Our GP said the only way they would do emergency surgery on the hernia is if it became "strangled" (I think that's the term he used). If not, then it could be 9 months to a year before we could get it fixed. We meet with the oncologist on Monday again to see if they will proceed with the next round on Tuesday. I hope something can happen and the surgeon and oncologist can co-ordinate and make a game plan. This is when I wish we had all the money in the world and just pay to get the treatment we need. Layne now has a belly belt and it seems to help with the pain a bit and he can walk a bit better. I hope it settles down a bit because I don't want him to deal with pain for the next 9 months. 

Hanging out with dad at the hospital just before leaving to Edmonton

Getting hydrated with his mom while we were gone

Can you see the bulge on the right side of his scar. It's kinda hard to see in this picture but it's definitely there.

Blake ended up having his tummy pain again for seven nights straight. I thought it would never go away. We meet with his paediatrician last monday to discuss what his follow-up ultrasound showed. The pain started again the night before his appointment. It showed the lymph nodes in his colon were still inflamed but we were told that the pain would be temporary. The thing is that day, he was not experiencing any pain during the day again. Once up in Edmonton and after night 3 of pain I decided to take him into the Edmonton children's hospital. I can't describe how hard it is to watch your child in such bad pain. At this point during the day he just laid on the couch all curled up in a ball and was complained he had a tummy ache but he wasn't having the extreme pain he was having at night. They again assured me that it was just the lymph nodes and it would get better. I still can't believe swollen lymph nodes can cause that much pain. By night 7 he woke up by 9pm and the pain was coming hard and fast. My mom and me took him in to the hospital again. They did a urine sample and an x-ray which still showed nothing. They again told me it was most likely his lymph nodes due to a virus he picked up. I guess I might always assume the worse now because it took us 5 years to have layne diagnosed and I feel like our health care system doesn't run the necessary tests. I explained to the Dr that she probably thought I was crazy but I don't trust Dr's. I explained to her Layne's situation and said I wanted to make sure they were certain and running all the tests that needed to be done to make sure this is actually what it was. She sat down and went through everything with me. I said how do we know it's not it's bacterial, or a parasite or celiac, or lupus or lymphoma. I won't bore you with details but after she was done I felt a lot better about things. Thankfully since that night he hasn't had the same pain. Occasionally he will complain his tummy hurts and still sleeps with a heat pad. (I think that brought him lots of comfort for those 7 nights). I pray every night that the pain won't come back, that it was just a virus. With our baby due in just under 5 weeks I really hope this will be long gone by the time she gets here. He was finally able to go to preschool for one day this week and skating. Hopefully we can get back into the swing of things. A big thank you to my mom, dad, and brother for helping with the boys while I was in Edmonton. I think I would be in the looney bin if it wasn't for you. My mom was able to help sleep with Blake so I could get some good sleeps. Thank you Jackie, Rusty and Ciana for taking care of Layne while I was gone because again, I would be in the looney bin! (Is that politically correct anymore haha)

Wouldn't even get off the couch to colour!

The red flush would come out on Blakes cheeks again when he would get tired. This is us waiting in emerg for 3 hours.

He even started getting the red flush all over his body!

This is how he spent his days on the couch

Last night of pain in emerg. He loved getting his back rubbed and would sleep like this with a heat pad squished in his tummy most of the night. 

On a positive note Layne was able to come to my work christmas party last night. After getting the belly belt he felt good enough to go. We enjoyed ourselves. It was good food, company and fun games. each year we play this money game. It is super fun. This year me and another girl tied at the end and one the jack pot. We decided to split it. I guess we are lucky that way! It's nice to get out with Layne!

Playing the game!

Big winners!