And then we got a day in Banff!

Time out at the hospital

Mason was told that he could "go out" without tubes and play in the playground for 30 minutes, but he had to drink 500ml. of water while he was out. What would you do?

The Journey Continues

We didn't expect to be updating Mason's Blog again. We've been hoping and praying that Mason's cancer story was behind him. Since that is not the case, we continue to have faith that Mason's Miracle is still in progress. Jade wrote the following update. It will bring you close to "up to date". I will add additional posts as time and events unfold.

Saturday, March 13th
I know a lot of you have been waiting to hear from me and I'm sorry. The past week has been extremely hard and my mind has not been on communicating with anyone. I hope you all understand.
First of all I would like to thank you all for your thoughts and prayers. It means more than I can express. When your child is sick and so much is unknown, all I have is prayers and the belief and hope that God is listening and will cure my little boy, and if God hears it from a lot of people I believe it makes a difference, so thank you.
Mason has a tumor in the original site of his previous lung tumor on the right lung, and had two more on the outside of the rib cage that have been removed. They also found another small one on the left, a totally different one than the one that we had originally come to Calgary this trip to have removed. That one is also still there but has not changed or grown so at this time they are not concerned with it. The tumor on the right lung is in a very bad spot and has grown quite rapidly. In fact at our last CT in early February they believed that it was just a buildup of fluid and were just going to extract it with a syringe when we came up this time.
We have been on a roller coaster of emotions and at times terrified and completely distraught. When we first learned of the tumor on the right, our surgeon just paused in the middle of the surgery to come and tell us and then she was going to proceed to try and take it out. She was very worried that she may not get it all and if she did, would have to take a lot of lung and possibly all of it if she couldn't spare the airways, which she has never done before. She couldn't guarantee anything and was unsure what Mason would be like afterwards. From there things changed again as she decided to speak with the oncologist on call before proceeding and we were called back in to discuss other options. The oncologist thought that we should maybe hold off on proceeding with surgery and have another CT done to make sure there wasn't more that could possibly be missed or damaged. I was very worried about leaving the tumour in him, panicking about it growing more, but after speaking for a long time we decided that it would be best to regroup before proceeding. After the surgical teams met with the oncologist teams they came to the decision that chemo would be our best option right now as a means to shrink the tumor to a size that is safer to remove. So, that’s what we are doing. So far Mason has had his heart tested, kidneys tested, a bone scan, an x-ray and a central line put in his chest. Everything checked out good so he started chemo on the 11th. We are on our third day of chemo today and so far so good. He is feeling great and is very positive. He is receiving two drugs that he has never had before and they are given back to back 5 days in a row. Of course there is a major list of side effects with both and also with the anti-nauseants. The major one is damage to the bladder which they give follow up medication for. He is also on a steroid for the nausea which we have noticed is making him a little puffy so they cut it back today. Also his phosphate has been low so he is now taking phosphate orally. After the 5 days of chemo he has a full day of re-hydration and then he gets to get out for about two weeks. During those two weeks his counts will drop and he will become neutropenic which makes him very susceptible to germs. I will give him a GCSF injection everyday to help build his good cells back up. We had to do that before so should be okay with this. After his counts come back up we will come back in for another round of chemo. His new catheter in his chest is very different than the port he had before. This one has to be covered all the time and we have to be very careful with it. The tubes hang out of his chest at all times like a constant IV, and I have had to learn how to heparinize it every two days and change the dressing and cap ends every 7. You can't get it wet either so bathing and showering has become difficult. Mason and I are going to be staying in Calgary for a while. We need to stay close and until we know when the surgery is going to take place and until I know what he is going to be like away from the hospital. It is going to be very difficult on us all but we feel this is the best place for him right now.

Friday, March 19th
I know there has been a lot of time between these two entries but I need to do this in chunks as I'm feeling very overwhelmed at times sitting in front of a computer.
We got out of the hospital on Tuesday the 16th and are staying at Rick and Bev's (Justin's aunt & uncle). Mason did really well. The last two days in the hospital he was a bit more nauseated and less hungry, but that was to be expected. Also, Justin and Kale left for Moose Jaw on Sunday so that added to his depression a little. My Dad came up on Saturday night and my brother on Monday so it helped to have company. Dad brought my car up for me. They are both staying for a while and are bunked in with my brother-in-law, Collin. Justin and Kale came back up last night, Mason was SO excited, he ran into their arms when they walked in the door at 11pm! We went to the hospital yesterday to check his counts and they are still up so he is not neutropenic yet, but they suspect by Monday we will see a big drop. We are having a big salmon meal tonight that Justin is going to cook up. Mason has been craving salmon and has been asking for it for days, but only his Dads will do!!! So he is looking forward to it. We are hoping to get outside tomorrow, maybe drive into the mountains for the day if the weather is okay.
Anyway, I really want to get this sent, it’s been weighing on me for a while! We are scheduled to be back in for his next round on April 2nd. Mason has an e-mail account: mason.clewis@gmail.com, and would love to hear from you. My Dad is going to be getting his blog up and going again so you can communicate that way as well. The blog is www.masonsmiracle.blogspot.com
We miss you all, thanks again for all your love and prayers, and I hope the above helps us all to stay in touch better. Please pass on to anyone I may have missed. I am sending another e-mail as well with a picture of Mason that I took in the hospital with his bear "Lucky". Lucky has been to every hospital stay with us from the very beginning of this journey, including the operating room, his name suits him well!! His outfits have changed a lot and he even has his own wheel chair. He wears a cross also, which has never been taken off!
Love to you all, Jade

Mason's Wish Trip

Hello everyone! I must first start by apologizing for this blog entry taking so long to post. We tried several times from the Bahamas but the communication was very poor there and every time we would just about get the pictures on, the internet would shut down! Once returning home life got hectic again and took me a while to get things organized.
We had a fabulous time!! It was the a very special experience for all of us, one we will never forget!!! It was the first holiday we have taken together as a family, and so needed! We had great weather and so much fun. Mason's wish came true on our second day when he got to swim with a 27 yr old dolphin named Cherri, we all got to swim with her. She was a rescued dolphin from the ocean and she had bite marks to prove it. What an amazing moment to witness, it was really the big award after a long battle, the "prize at the end of the race"!!!
On our 4th day we took in the water park and aquariums. We saw SO many sea creatures including sharks (all types) and manta rays. Mason and Kale did every slide that was there including the straight down one on a huge pyramid that ended by going through the shark tank! (see picture) Their mother didn't do that one!!!
Our whole trip was full of awesome memories, hard to leave and come home to our cold winter. If anyone would have said we could stay we all would have!
Since returning home we have been busy. I have returned to work part time but worked the first week back everyday to get the swing of things again. So far, so good. Mason started physio as well which we have been waiting for, and is wearing a new brace too. We had to special order it up from the states. It is made from neoprene, so it's gentle but can also hold form good. He has also been busy with flying fins twice a week as well as drum lessons and starts fencing classes in February.
We hope all is well, and wish you good health and happiness this new year. Enjoy the photos!

Wow, day 4 already! Time sure flies when your having fun. So far we have had the time of our lives. First night here we spent the evening ringing in the new year in style. We were all very happy to see a new year begin, and what a way to start it off. We have enjoyed the ocean and sandy beach tremendously. We have taken in some site seeing and shopping, lots of eating, and we must say the food amazing! No sense being on a diet here!!! Yesterday we got to see Mason's wish come true and what an experience that was, one none of us will ever forget. Anyway, were off for supper, sorry this isn't longer as we are having trouble with the communications down here, everything very slow.Happy new year to you all, Love The Clewis Family

Mason's Celebration Party

Hello everyone! I wanted to get these pictures on here of Mason's celebration party that we had on September 27th at our cabin. It was a great surprise for him and we all had a great time. He was first surprised by a limo ride that came to pick him and Kale up at our house and continued to drive around and pick up some of his close friends. The limo drove him and his friends out to our cabin to be further surprised by a big party waiting for him where he was surrounded by family and friends. There was a big tent set up on the grass, a petting zoo, a D.J. bus with Karaokee, and a huge firework show. Thank you to all who helped with the set up and decorating, the organizing, the wonderful food and drinks, the awesome gifts and all the clean up! We would also like to thank our family and friends for making the event so memorable by being out there, it was so nice to see so many people who have supported us through this time! THANK YOU!!!

Mason is doing wonderful. He started his first full week of school last Monday and is so thrilled to be back. He really missed his friends and the routine of it all. We have no trouble getting him up in the morning which I was quite concerned would be a hard adjustment for him. You don't realize how much routine and "the norm" is missed until it is taken away from you! He is just so happy and loving life right now. He dressed up as the "Grim Reaper" for Halloween! The scarier, the better for him! He loved seeing his family and being able to go around with his friends. Life is staring to feel a little normal again. Mason is having his Done Chemo party that the Allan Blair clinic hosts for the kids when they are done their treatments on the afternoon of Friday the 7th. I believe that there is cake and pictures with the doctors and nurses. We still have medical appointments, and are actually off to Edmonton on the 9th for a follow up with his surgeons. Hopefully we will get the o.k. for Mason to start physio on his arm and leg which we are hoping will help to straighten his arm a bit more and regain some muscle. He still has his port-a-cath in his chest so we need to get it flushed once a month with heporin and saline to make sure it doesn't plug up. It will sure be nice when that can be taken out! They like to leave them in for around 6 months after treatments stop.

Mason was granted a wish from the Childrens Wish Foundation. He chose to go to Atlantis Paradise Island in the Bahamas to swim with the Dolphins! It looks like we leave on December 26th! He is so excited!! We all are!!! He loves to swim and loves sea creatures, so this is really a dream come true. Many times he has told us that he wants to be a marine biologist when he grows up, which is so suited to him.

We continue to live day to day, and know that it is still going to take time to heal for all of us, but are so happy to be where we are right now and can actually begin to look ahead and see the sunshine on this road. We are so grateful and every night when we are tucking our boys in we say the same prayer of thanks all together as a family. Some nights it really hits me, seeing them both laying there safe and so peaceful, realizing that we are not going to be waking up in the hospital, seperated from one another. It really is a gift and I will continue to be thankful for it for the rest of my days!!

I will continue to post every so often on this blog so please continue to check back. I will get some more pictures up soon, definetely after his wish trip!

We love you all and thank you again for all your support and prayers.