Cancer Perks

Layne is the first to attest that there are not many perks to having cancer but the term "cancer perk" has been thrown around at our house. Whenever someone goes out of their way and does something nice, we say "well that's a cancer perk". This week he definitely had a major cancer perk. Layne's dad along with the help of a few other's was able to get in touch with Kris Versteeg who plays hockey for the Chicago Blackhawks, as well as a rep with the Calgary Flames. He set up that we would be able to meet Kris in Calgary the morning before they played the Flames at their morning skate. Then we were able to meet some of the Flames players after the game that night. Let's just say the day turned out much better than expected. Layne is still on cloud nine.

The week started off not so nice. Blake had 2 nights in a row where he was having waves of severe abdominal pain. Let's just say after watching Layne go through such horrific pain and then watching our son have it as well, almost put us all over the edge. The weird thing was during the day the pain went away but you could tell he was not feeling well. On night 2 when the pain started again I was able to take him to our Doctors house and get him assessed to make sure it wasn't anything like appendicitis. He didn't have a fever and at that point no nausea. After he was assessed we knew it was nothing crazy at that point but he told me to call first thing in the morning if things didn't get better. We gave him gravel and tylenol and a heat pad which seemed to kind of help the pain. He did throw up once after a wave of pain. So by the morning I called the Dr again and he got him in to do abdominal X-rays, blood work and urinalysis. The x-ray showed nothing significant but he called the paediatrician on call at the hospital to discuss everything with her. They were concerned that perhaps maybe he had something called intussusception. (I would explain it but haven't researched it enough but long story short if he had it it would cause a small bowel obstruction and surgery may have been required) So she asked to see Blake at the hospital and ordered an ultrasound. At this point Blake was no longer allowed to eat or drink. Thankfully he didn't have an appetite or it would have been a much longer day.  We got there just after 11 AM and were there until 6ish. By the time the Dr came to see us Blake was ready to go home. The ultrasound showed he did not have intussusception. The only thing it showed was he had a piece of stool sitting right by his appendix (they could actually feel it when they were feeling around his tummy) which had a little fluid around it and he had some swollen lymph nodes around that area but after consulting with the surgeon they did not think it was appendicitis. She noticed it looked like he might have strep throat and said that can sometimes cause stomach pain in children. So she started him on antibiotics until we got the results back and said she would call if the swab they took came back negative, and then Blake could stop the antibiotics. We never got a call so he must have had it. So we went home. It took Blake a few days to get back to his normal self. He was wiped from having two rough nights but thankfully the pain didn't come back that night. He just had a follow up ultrasound today and we will meet with the paediatrician next week. Hopefully this was just some sort of nasty stomach bug and that's the end of it! I am so glad they ruled out anything serious and took us seriously. We needed it at this time of our lives. Again I am so glad we are living at Jackie and Rusty's house. We needed the help those few days. Jackie sometimes says that our family should be on a reality TV show... sometimes I think she is right haha.

For a few days when Blake would get tired his cheeks would go bright red

Looking around his room in emerge

Having a snooze waiting for the Dr to come

He got a sticker after his follow up ultrasound today

He had to fast for the ultrasound so Grandma took him for pancakes after his appointment! 

Thankfully Blake was feeling better and it didn't spoil Layne's exciting day.  When Layne found out he was going to the Calgary VS. Blackhawks game he was so excited and decided to invite me! I for sure thought he would invite someone who would be as excited as he was but he was adamant he was taking me. Between his siblings and some friends I thought for sure someone would slip something in my drink to take me out of the running to go with him. Thankfully everyone was nice and bit their tongue... for the most part :) Layne had a friend one night surprise him by dropping off a Blackhawks Jersey to take with him to get signed. People are truly kind and amazing. Because we weren't sure if Layne would be extremely tired after his last round of chemo, we planned to drive up wednesday night and stay at my Aunt and Uncle's house, get a good sleep and then go to the practice in the morning. We are so grateful for their hospitality and yummy food :) On the way up we were able to meet Layne's good friend Kevin for some supper. The first thing Layne wanted to eat after his last surgery was Famoso pizza and has been craving it ever since. So we decided that would be a good place to stop and catch up with Kevin. Layne has wonderful friend's. I am so glad he has kept in touch with all of them.

Thankfully Layne has done awesome after this round of chemo. He had a few days where he was drained and had diarrhea. His other brother and wife came home to visit him from Arizona and were able to take him to the hospital to get hydrated a few times. This really seemed to help. I am so happy Layne has such supportive family.

The big day finally came and we made our way to the Saddledome to go to the Blackhawks morning skate. While we were there Layne noticed Kelly Hrudey sitting across the way and decided to go and chat with him. He was very nice and Layne was glad he got to meet him.

Kelly and Layne at the morning skate

When the practice was over, before the players got off the ice they called Layne down to the dressing room area. Kris was the first one to come off the ice and introduced himself and handed Layne his signed practice stick. We got a picture and he told Layne not to go anywhere. That he had something for him and told him everyone else would be coming off and to get pictures with them and he would be back when he was dressed. At that point you could see Layne was ecstatic. I thought he might collapse haha. I was the official photographer and Layne got to get pictures with all the players as they came off and had a few of them sign his Jersey. All of them were so kind and wished him well with his fight with cancer. When Kris came back he brought Layne a Jersey that had been signed by the whole team. The back had his number, one sleeve had Kane's number and the other sleeve had Toew's number. I thought Layne would die. Let's just say this Jersey is going up in Layne's future "mancave". He was able to talk with Layne for a while. He reserved tickets for Layne and Russ (Layne's dad) and I for that night's game. We got to sit with his family and they were awesome seats. He was so kind. Thank you so much!

Layne and Versteeg

Layne and Toews

Layne and Carcillo

Layne and Kane

Layne talking to the assistant coach Kevin Dineen

Versteeg, Layne and Hossa

Layne and Seabrook

After that We went back to my Aunt and Uncle's house so Layne could have a nap. He was wasted after all the excitement from the morning. When he woke up we were treated to a nice roast beef dinner and then we headed back to the Saddledome for the game. The game was an awesome one to be at. Layne has been a diehard Flames fan all his life but after the morning he decided he would be cheering for the Blackhawks. I wore Layne's flames jersey so he wasn't completely cheating on them. The Blackhawk's won. Kris Versteeg got two assists. It was an intense third period. At the end of the period we went up to the top of the section to meet a rep from the Flames. Layne quickly switched his jersey. She took us downstairs and Layne was able to go into the Flame's locker room. Layne was in awe. He was able to meet a few of the player's. He was able to have Monahan sign his Jersey. Sadly no body hung around because they had lost. As we were driving home Layne still couldn't believe all that had happened that day. He slept like a baby that night and has been in awesome spirits since. A big thank you to Layne's dad for getting all this set up and for those willing to brighten his day and bring him some happiness during this difficult time. Thank you to all our family for watching the boys, so we were able to do this. This week isn't over yet. While Layne was in the hospital in extreme pain our sister in law Paige got ahold of Flame's former player Theoren Fleury. He is Layne's hero. She set up for him to have breakfast with him later this week. So we will be having another exciting post coming soon!

Waiting for the game to start

We were 18 rows up!

Walking into the Flame's dressing room

All of their sticks

Layne loved looking at all of their equipment

Layne and Monahan

Glencross and Layne

Layne and Hiller

Round 4

I have had a few people this week ask me if Layne has made a decision about chemo. I forgot I left it that he still hadn't made a decision. Well he did. He decided to go ahead with IV chemo and he actually started his 4th round yesterday. In the mean time. He has received his iron via IV. His hemoglobin levels are slowly creeping back up. Normal I believe is 130-150. He was at 112 as of Monday. A lot better than 89. Layne's steristrips have finally all fallen off his incision. He discovered a few days ago they forgot to remove one of his staples. One of the strips that they put on was hiding it. You could see Layne was starting to freak out a little but because it has been in there for 4 weeks. He called the floor we were on and they said we needed to have our DR remove it but it was a saturday so we couldn't do that. My dad quickly volunteered to remove it. He loves doing things like that. So we got some not-so-sterile pliers and he removed it. It came out nice and easy. It was nice to avoid another trip to the hospital.

Getting his IV iron

Dad removing his staple. Can you tell Layne has all the confidence in the world for my dad. 

He got it out!

Layne's brother was able to bring his family home over the weekend. He took a few days off from school. It was nice to have them here, to have a little fun while Layne was feeling well. I can understand why they don't want you to take too long of a break to start chemo again. He didn't want to start because he just wanted to feel good for a bit longer. I know studies also say that its the most effective the quicker you start it but I can also see you never wanting to go back and do it if you wait too long. We were able to go out for dinner with all of Layne's family for a pre-chemo party again. They even gave him a free dessert. Layne and I went to my brothers basketball game afterwards. I had to persuade him to go. He has got pretty used to staying indoors I felt like he was forgetting about his fun/social self. Thankfully he came and had a blast. He decided while he was feeling good he would go out again. We went out to my brothers basketball game the next night too and went out for pizza afterwards.

Dinner at CoccoPazzo

2 Guys and A Pizza Place after Spencers b-ball game

Layne's brother was able to go with him to his chemo appointment yesterday. It's nice to have other people go and see what goes on. It's probably a little more entertaining than me going every time. They have made the changes to his treatment. He takes pantaloc (a drug that reduces acid secretions) on all the days he takes the steroid. After the pharmacists met, they decided it would be in Layne's best interest to stay on the dexamethasone, just at a lower dose. Hopefully the lower dose along with the pantaloc will help things. He didn't get that bolus I was talking about. It makes the appointment a bit shorter. So far, so good. He goes back in tomorrow to get the bottle off and will get hydrated again. They have a standing order set up at the hospital closest to us incase he gets diarrhea again. Fingers crossed we won't need to use it but we are ready and can handle anything as long as he doesn't have to have surgery again.

Brotherly love!

Another highlight to Layne's week was Blake started learn to skate. He had one lesson and then I took him to public skate yesterday and he is already skating on his own. He can turn on his own and when he falls, he gets up on his own. Blake can get pretty frustrated really easily so we were nervous skating with just be a whole bunch of tantrums when he falls but it's just the opposite. He is wonderful, never complains and works hard. A few of Layne's family members have had a few very exciting things in the works for him. Both of them will happen over the next week and a half. I am going to leave you guys hanging and not say anything but let's say they have left Layne with something to look forward to and left a lot of people feeling very jealous. Let's hope his energy is back up and he is doing good for next wednesday. He will have a busy few days. Our next post should be very entertaining!

Ready to play hockey!

Decisions, Decisions

So we met with the oncologist yesterday. We had a full entourage that went in with Layne. There were 5 grown adults. All of us were very concerned and had lots of questions. Thankfully they were all very professional and answered all of our questions. We were impressed with how the oncologist handled things and explained things. We all came out feeling a lot better and were all on the same page. He, like the surgeon is kind of mystified as to why Layne had a small bowel obstruction. He had a few small adhesions but based on his symptoms they expected the block to be a lot worse. So they are hoping this is a one time thing and think that it was probably a mixture of the dexamethasone (steroid), Iron pills and chemo he was taking along with the adhesions, exacerbated what was happening. He went over all our options. 1) We could stop chemotherapy all together. There is a 50% chance that the surgery got all of the cancer and along with the 3 rounds of chemo he received, that would have helped. 2) We can switch to taking oral chemotherapy drugs, that are not as effective as IV chemo but if problems arise we can stop treatment. If you are on IV chemo you can't stop the treatment, you have to finish out the cycle because it's already in your system. 3) Continue with IV chemo but make some alterations. He would no longer take the steroid for his anti nausea meds (as this is the most likely cause of the inflammation in his bowel) he would most likely take Maxeran now. He is no longer taking iron pills and he starts IV iron next week to avoid any irritation of his GI tract. Lastly, there is a little 15 minute bolus of a certain drug they give him right before he gets sent home for the two days with his chemo bottle. They are not going to give that to him anymore as studies haven't shown it to be that effective and that bolus can cause a lot of his diarrhea problems.

Layne just spoke to the pharmacist at the cancer centre to get a few more questions answered. I guess all the pharmacists on staff are going to meet together and discuss all these drugs and others and figure out what the best plan would be for Layne. It's nice that they are taking this so serious. At this time Layne still hasn't made a set in stone decision but we are thinking we are going to continuing doing IV chemo with the alterations that they will make. We still have the option to switch to the oral chemo at any time if things seem to be going down the same road. Layne wants his best chance to live as long as he can. Doing this, there will be no regrets, we will never question that we didn't do all we could. It looks like he will be starting chemo 2 weeks from now if all goes well.

Layne has had a good week. It was nice to get him home. The boys were so excited to see him when we got home from Edmonton. They have enjoyed playing lego with him and watching movies. It's nice to get back into a routine, not feel like you have to be two places at once. His incision is healing nicely. It is still pretty tender but he is doing well. He plans on coming out trick-or-treating with us tonight for a bit and was able to go to the halloween parade at the school.

Thank you again for everyone who has dropped off meals or treats or flowers, sent cards or watched the boys. We are blessed to have all this support! We are very grateful for Rusty and Jackie opening up their house to us. There is no way we could have done this without all of your help. Have a Happy Halloween... I know we will!

Carving a pumpkin for the halloween parade

Making worms and dirt at Aunt Ciana's

Heading out to the halloween parade

Walking at the halloween parade. Blake was so proud to show off his batman costume. Ty wouldn't let me put him down. He was too scared of everyone else haha

Halloween Dinner. We got to drink orange pop and orange crusted pizza! We had a special guest with us at the table called Mr. Bones!

Coming Home

Well the last few days have been a few days of relief. Things seem to be going in our favour. He has been able to increase his diet to the point where he can eat cream of wheat, ice-cream, toast and broth. Pain is very mild but only where the incision is. This morning the surgeon came in and put in the order to get his staples and IV taken out. He also gave the go ahead that he could go home. It will be nice to have him home. I will be able to help him in the night, he still sometimes has a hard time making it to the bathroom in time. Last night was his first night alone and he was too nervous to ask his nurse for help because he hadn't been too kind to him earlier on in the night. I am again so thankful for Layne's parents and making sure he always had someone there for him. I truly believe that has helped him significantly this time around. We are experts now but lets hope we never have to do this again!

A few days ago the surgeon showed Layne the x-rays before and after surgery. You could see a huge difference and it showed us the surgery needed to be done. It made us feel better about our decision to do the surgery and showed us the pain he was experiencing then was not the same pain he was experiencing before the surgery, even though it looked like it felt the same. Poor guy!

So once he said we could go home, Layne had a nap, he ate lunch and had a shower and we were on our way. Even though this time around feels like its been 100 times worse then last time, I still think he is leaps and bounds ahead mobility wise from the last surgery. He had been very sick for a long time before the last surgery and when he went home he could still hardly walk. This time we walked to our car together. I tried to have him wait at the entrance while I pulled our van up but he insisted on walking. Thankfully it wasn't too far!

The drive home wore him out. He is now sleeping in his own bed and he says it feels great! The boys did go up to Edmonton this week and I will head up there on Thursday to spend a few days with my family. It is quite peaceful sitting here typing this up - Thanks Mom and Dad! I am glad he has a few days to recuperate without the boys here. We miss them dearly though!

We meet with the oncologist next Thursday to review everything and discuss our future options. Layne is very nervous to even consider doing chemotherapy at this point. I don't blame him. Hopefully his mind can be at ease after our appointment next week and we can feel good about our options for the future. We will have lots of questions and hope all of our concerns can be addressed. I am off to make beds and give the bathroom a good clean while Layne rests. Here's to no more eventful days and no blog posts in the near future! Thanks again for all your thoughts and prayers!

Ready to go home. You don't realize how much weight he lost until he put's his own clothes back on. Let the fattening up begin! We will have to weigh him once he wakes up.

A Turning Point

I think today might be the turning around day. It might be too soon to say but I am going to make it official. Layne has been through hell these past 10 days but he is on his way back.

Two days ago he had to have his NG tube put back in because he started throwing up again. They clamped to off again yesterday for 6 hours to see how he tolerated it again and when everything was okay they took it out again. He was told though if they had to put it back in that it would need to stay in for 2 days this next time. Layne didn't want that to happen... and he didn't let it happen. He has been feeling nauseous but not throwing up. I think at this point it is the fact that he is taking pain medication orally with out any food in his tummy. But it is manageable. He won't take the Tramacet shots they were giving him for pain anymore because he said they don't make him feel well. So now he is only taking Tylenol and it seems to manage his pain fine. It's nice not to see him so loopy on drugs.

Getting NG tube back in

After getting his NG tube back out. So happy!

He didn't have a very nice night again. He slept better but his nausea was bothering him. Thankfully around 10 am is seemed to go away on it's own. Since yesterday he has been exhausted so every few hours we have him walk and then he is sleeping in-between. Completely wiped. Which is good, because walking and sleeping are what is going to make him feel better. I got there this morning at 11ish just in time to hear Layne have his first fart! Yes I called it a fart. In Layne's family the "f" word is not allowed but thats what Layne called it when it happened much to his mother's dismay. He was then able to have an extremely large bowel movement. Let's just say there was lot's of cheering and crying in his room. It's kinda sad how we can get so excited about bowel movements but trust me you can. He has had several since than and has been able to pass gas freely. He has been able to walk a lot today. I think his goal was to get to 20 laps by the end of today and he was at 17 when I left at 7:30pm. His sister is now with him and I know she has been having him walk, so I am sure his goal is beat.

Our family was able to all come in for Sunday dinner to break our fast. It was nice. The weather has been beautiful so we ate outside at a picnic table. Layne because he has been doing well and drinking fluids was able to come out. They were able to disconnect his IV so he had nothing attached to him for a bit. The boys came up to the room to bring him down. He was on the toilet and Ty ran right up to him to give him a big kiss and then said "oh yucky poopy daddy". It made Layne laugh. It was good to see him laugh. Blake was able to push him downstairs in his wheelchair with only running into the wall a few times. Layne was able to eat his jello and sip on his gatorade while we ate dinner. He is really craving food which is a good sign. I felt bad for him. It was good to have the whole family come for dinner and have him watch our crazy full of energy boys run around outside. He didn't last long but he said he loved it. His white blood cell count is good now so they lifted his reverse isolation protocol but we are still asking for no visitors. We are just trying to be super careful and let him get the rest he needs, so he can get out of the hospital as soon as possible. Thank you again for all your fasting and prayers. I believe they have helped him turn around today!

Coming outside for some dinner as a family

All together again

Jackie was able to take the boys home and spend some much needed time with them tonight making halloween crafts. That gave my mom the opportunity to visit with Layne. My mom tomorrow  will be taking the boys back to Edmonton with her for the week. She has been a lifesaver! Once Layne is out of the hospital I will go up for a few days to spend time with them and not have to worry about anything else but them. That will give Layne a few days at home to get a routine before they get back. 

Don't Quit Before The Miracle

One of Layne's friends reminded us of this quote by Layne's hero, Thereon Fleury. He said, "Don't quit before the miracle". We definitely have needed to remind ourselves of that over the past day or so.

Things were looking up my last post. By yesterday morning Layne's epidural was no longer working but surprisingly he wasn't in a ton of pain. He didn't require to take any pain medication until 1 pm. That made me feel really excited about his progress. They took out the epidural while I was there, which means the catheter was able to come out and before I got there they clamped his NG tube to see how he tolerated it. He did fine so 6 hours later they took it out and was able to start a liquid diet. Layne said having his first sip of water was the best feeling in the world. I was able to get him all washed up and even shaved his face. He was looking quite handsome after all of that and I snapped a picture of no tubes before having to put his oxygen back on. They keep trying to take him off oxygen but his O2 sats drop too low when they do. This happened the same thing after last surgery, so I am not too worried.

Looking Good!

First sip of water

Things were just fine when I left last night. Unfortunately things went down hill in the night again. His pain got out of control. He is no longer able to pass gas or have bowel movements again. So the surgeon this morning said he would have to go back on the NG tube if he wasn't able to do those things in the next few hours. We had a different Dr come in a few hours later telling us he didn't want him having an NG tube and ordered abdominal x-rays to see if gas was building up again. (Which we already knew, because his tummy was distended again) I should have been smarter and asked more questions. It is quite frustrating at the lack of communication on their end and I should have called Layne's mom to double check what the surgeon said in the morning. Long story short we should have put it in. Around 4pm Layne started throwing up again after having a good afternoon. It got really bad after he got back from his x-rays the feeling of nausea was constant. Thankfully the surgeon left an order to put the NG tube in and we were able to get that right away. On a positive note, through all of this his pain has been managed. It's sad though how loopy the meds make him. He doesn't like them but right now we need to keep the pain away. When I left tonight he was finally settled. Pain was good, nausea was gone and he was sleeping. I hope we have an uneventful night but thankfully his parents will be taking shifts again throughout the night to keep an eye on him. The surgeon seems to think this pain and distention are coming from inflamed bowels due to chemo and we just need to wait it out. I am hoping this is the case and we aren't missing anything. If he isn't able to tolerate fluids in the next few days they will start him on TPN. I am not quite sure what it is but he will receive nutrients that way.

This morning when he was having the really bad pain, Layne called a few friends from Lethbridge who were able to come and give him another blessing. It's nice people will come at a drop of a hat to help. I wasn't there but Jackie was and she was telling me what was said in the blessing. It's amazing how in all the blessings he had, the same things are said. It's a good reminder that these blessings come from god that he is promised the same things. It's very comforting and a good reminder to have faith and believe in what is said. After that they were able to get the pain under control and Layne was really wanting the boys to come in. I brought them in at noon. We have been very strict about having no visitors we don't want Layne to pick up anything from anyone. But we decided it would be okay to break the rules and make his day. It was nice to have them there even though it was a short visit. They get too distracted too easily. But it is nice to see how concerned they are. He had a few waves of pain and Blake held his hand while he was having those. Both of them love their dad. They are always asking about him and praying for him. They make us so happy! After they left I washed Layne down again and wiped down his room just to be safe.

Blake helping Layne through a wave of pain. 

Layne was smart and took off his oxygen for when the boys got there. Ty would have been too nervous to go near him if he had it on. 

My handsome boys!

Thank you again to anyone who has sent texts/emails/cards, anyone who has dropped off treats or meals to our house and a big thank you for all your prayers. We truly are blessed by all the support we are receiving!