Round 5 of chemo is complete and Justin is home. It didn't go as easily as the last time, but it wasn't the worst he's been through. The nausea seemed to come and go and when it came, it was sudden. He was fine one minute and sick as a dog the next. The only thing that he can focus on during these bouts of nausea is going home. Although he acknowledges that the people caring for him are wonderful, he hates the hospital and just wants to be at home. Well, we are home now and his spirits are already better!
Spending every third weekend in the hospital has become routine, and not a routine that any of us look forward to. The days are long and the nights are sleepless. Staring at the same four walls is mind numbing. Sure, we can take walks if Justin feels up to it, but when he's hooked up to the chemo he can't leave the ward. And of course, any time we go anywhere Justin has to drag his IV pole with him. He is hooked up to it from the moment we get to Cancer Care on admission day to the moment we are discharged.
It's surprising how easy it is to 'forget' sometimes that Justin has cancer when he's feeling so good between his treatments and life seems 'normal'. Even when we're at the hospital, because it has become the new normal for us, it's easy to put out of my mind the reason we're there. I never realised that I was subconsciously doing this until yesterday. I was on my way out of the room, when I looked at Justin's IV pump to see how much time was left on it. When I saw the word CHEMO on the pump, I felt like I had been punched in the gut. I just stood there and thought to myself, "Oh my gosh. My son has cancer." It was a grim realisation after all of the excitement of the past few weeks. Getting caught up in all of that excitement is obviously a good distraction, but it doesn't change the fact that regardless of how well Justin is responding to the treatments, he still has cancer and he still has to go through all 13 of his chemo treatments. Thus, this will be our 'norm' for months to come.
I can only pray that it remains easy to 'forget' that Justin has cancer. If that is the case, that means that he is doing well. That means that he is avoiding any other illness that comes from being immunocompromised. That means that he is beating this disease. And he will.
Monday 23 September 2013
Thursday 19 September 2013
Life can only be understood backwards; but it must be lived forwards.
A Week In Review
Justin had a busy Tuesday this week. He had three appointments scheduled for the afternoon. First on the list was Cancer Care at 1:00. The nurse took his blood, did line care on his central line and changed the central line dressing. At the previous appointment last Friday, they were concerned based on his counts that he may need blood or platelets this week. It turned out that his counts are good so no transfusion was needed. That's good news!
From there, he went for a CT scan at 2:00. The scan was part of his scheduled treatment plan and was done to see how much further the tumour has shrunk from the last one done in early August. The doctor phoned me yesterday and told me that his lungs are absolutely clear and the tumour has shrunk a further 50% from what is was after the last scan. Even better news!
After the CT, he had to go for an echo cardiogram at 3:15. This test is basically an ultrasound of the heart to see if the chemotherapy is having any negative effects on his heart. We have not heard any report on the results of this test yet. I'm hoping no news is good news!
Hindsight is 20/20
Justin had been taking Taekwondo since last fall. He loved it and was doing very well. His stamina, strength and flexibility had increased so much in the 8 months or so that he was attending. In April, Justin was complaining of back pain around his left shoulder blade. I was taking him to see a chiropractor to try and alleviate the pain and correct the problem. The chiropractor had said that it felt like one of his ribs was pushing things out of alignment. Due to the pain Justin was in, he missed out on gym classes in school and many Taekwondo classes throughout April and May. In early June, Justin was still in some pain but felt like he was well enough to take the promotion test for his green stripe. He went to the class, took the test and was to go back the following week to find out the results. A couple of days later, Justin started to feel sick. He had flu-like symptoms. He felt nauseous, had stomach pain and a fever. These symptoms persisted off and on throughout the week and by the next Sunday night he was admitted to the hospital. We were now on our way to finding out the true cause of Justin's back pain - a tumour on one of Justin's back ribs. That first hospital stay was 2 weeks and 3 days and then we were in full swing with chemo treatments and clinic appointments. With so much going on, we never made it back for Justin to receive the results of his Taekwondo promotion test. Finally, last night, we were able to go to the class and Justin was presented with his green stripe. I was so proud! He decided to stay and attempt the class. He was doing great with all of the exercises and was really pushing himself. I, being Mom, of course was worried that he was overdoing it. I watched him for a while and noticed the increasing strain on his face. I know that Justin is proud and didn't want to give up. It broke my heart to see him struggling with something that had been so easy for him only months before. The redder his face got and the more he winced, I knew I had to step in. I caught his attention and asked him if he needed to stop. He looked at me and I could barely keep the tears from spilling out when I saw his fallen expression as he nodded his head. The class was just taking a water break so I went and explained to Mr. J (his instructor) that he couldn't continue. He, of course, understood and wished us well as we left.
Looking to the Future
I don't know if Justin will continue with his Taekwondo, but I do know that when he beats this cancer he will be strong enough to do it if he chooses. He has shown us so much strength during this whole journey. Not just physical strength, which he proved last night, but emotional strength as well. At the beginning, just after his diagnosis, he was obviously shell-shocked and couldn't wrap his mind around the battle ahead. In the past couple of months, he has grown and matured into a young man who often says that no matter how bad it is for him; there are lots of kids out there who have it worse. We see it every time we are at Cancer Care and every time we are admitted to Children's Hospital for chemo. I am so proud of the young man that Justin is becoming. I can't wait to see the man that he will be.
Justin had a busy Tuesday this week. He had three appointments scheduled for the afternoon. First on the list was Cancer Care at 1:00. The nurse took his blood, did line care on his central line and changed the central line dressing. At the previous appointment last Friday, they were concerned based on his counts that he may need blood or platelets this week. It turned out that his counts are good so no transfusion was needed. That's good news!
From there, he went for a CT scan at 2:00. The scan was part of his scheduled treatment plan and was done to see how much further the tumour has shrunk from the last one done in early August. The doctor phoned me yesterday and told me that his lungs are absolutely clear and the tumour has shrunk a further 50% from what is was after the last scan. Even better news!
After the CT, he had to go for an echo cardiogram at 3:15. This test is basically an ultrasound of the heart to see if the chemotherapy is having any negative effects on his heart. We have not heard any report on the results of this test yet. I'm hoping no news is good news!
Hindsight is 20/20
Justin had been taking Taekwondo since last fall. He loved it and was doing very well. His stamina, strength and flexibility had increased so much in the 8 months or so that he was attending. In April, Justin was complaining of back pain around his left shoulder blade. I was taking him to see a chiropractor to try and alleviate the pain and correct the problem. The chiropractor had said that it felt like one of his ribs was pushing things out of alignment. Due to the pain Justin was in, he missed out on gym classes in school and many Taekwondo classes throughout April and May. In early June, Justin was still in some pain but felt like he was well enough to take the promotion test for his green stripe. He went to the class, took the test and was to go back the following week to find out the results. A couple of days later, Justin started to feel sick. He had flu-like symptoms. He felt nauseous, had stomach pain and a fever. These symptoms persisted off and on throughout the week and by the next Sunday night he was admitted to the hospital. We were now on our way to finding out the true cause of Justin's back pain - a tumour on one of Justin's back ribs. That first hospital stay was 2 weeks and 3 days and then we were in full swing with chemo treatments and clinic appointments. With so much going on, we never made it back for Justin to receive the results of his Taekwondo promotion test. Finally, last night, we were able to go to the class and Justin was presented with his green stripe. I was so proud! He decided to stay and attempt the class. He was doing great with all of the exercises and was really pushing himself. I, being Mom, of course was worried that he was overdoing it. I watched him for a while and noticed the increasing strain on his face. I know that Justin is proud and didn't want to give up. It broke my heart to see him struggling with something that had been so easy for him only months before. The redder his face got and the more he winced, I knew I had to step in. I caught his attention and asked him if he needed to stop. He looked at me and I could barely keep the tears from spilling out when I saw his fallen expression as he nodded his head. The class was just taking a water break so I went and explained to Mr. J (his instructor) that he couldn't continue. He, of course, understood and wished us well as we left.
Looking to the Future
I don't know if Justin will continue with his Taekwondo, but I do know that when he beats this cancer he will be strong enough to do it if he chooses. He has shown us so much strength during this whole journey. Not just physical strength, which he proved last night, but emotional strength as well. At the beginning, just after his diagnosis, he was obviously shell-shocked and couldn't wrap his mind around the battle ahead. In the past couple of months, he has grown and matured into a young man who often says that no matter how bad it is for him; there are lots of kids out there who have it worse. We see it every time we are at Cancer Care and every time we are admitted to Children's Hospital for chemo. I am so proud of the young man that Justin is becoming. I can't wait to see the man that he will be.
Mr. Ryan (Ryan's Taekwondo) congratulating Justin on his promotion
Mr. J (Justin's instructor) and Justin
Monday 16 September 2013
A Dream Come True
It's been a while since I've written. Things have been going so well. Things have also been busy and exciting. We have been blessed once again by the generosity of people.
A couple of weekends ago, we were sitting around the campfire at the lake playing a game that we sometimes play. We take turns asking a question which everyone else around the fire has to answer. Questions like: If you could go anywhere in the world, where would you go? What's your biggest fear? What's your favourite car? Stuff like that. Trevor asked, "If you could meet anyone in the world, who would it be?" Justin didn't even have to think about it. He answered, "Ondrej Pavelec." Little did he know it would happen just days later. In the business he's in, Trevor meets a lot of people. And as they say, it's all about who you know.
Rob and Carla run the Winnipeg Pet Rescue Shelter. It is a no-kill shelter. That in itself shows the hearts of these people. They have known Trevor for years and we have been to a couple of fundraising galas for their shelter. They also know some of the Jets players and have had a couple of them at their business signing autographs in the past. Trevor decided to make a phone call and ask for a favour. They had heard about Justin's diagnosis and were thrilled and eager to make Justin's dream come true. It was set up rather quickly and we got a call saying that Justin would meet Pavelec the very next week. Justin, of course, knew nothing about it. It was so exciting knowing that we were going to surprise him with this. He would be over the moon!
On Thursday of last week, I went to the school at lunch time to pick up the twins. They, of course, asked where we were going. I told them we were meeting Dad somewhere and nothing else. When we got to the clover leaf at the perimeter and Portage Avenue, Justin asked if we were going to the Ice Plex. I asked, "Why would we be going there?" He told me that the Jets were in training camp. I replied, "Well, I don't know anything about that." ;) With wonder and excitement building, we pulled into the parking lot of the MTS Ice Plex. Disappointment clouded his voice as Justin said, "If I knew we were coming here, I would have brought my jersey!" I then replied, "Well then, I guess it's a good thing I brought it!" We were unsure exactly how this was going to go. We didn't know if we would all be allowed to meet him or if he would sign anything, but I brought sharpies, Justin's Pavelec jersey and hat, and Ryan's Jets hat just in case.
Trevor, Rob and Carla met us at the door. After the boys were introduced to them, Carla asked Justin if he knew what was happening here today. He said he wasn't really sure, but hoped he could see the Jets practicing. She grabbed Justin by both hands and explained that they had arranged for him to meet with Ondrej Pavelec after he was done his work out. With tears in my eyes, I listened to her tell him that they heard about what he was going through and that they wanted to do something really special for him and were glad to have been able to arrange it. We were soon ushered back to a more private place and awaited Ondrej's arrival. When he walked toward us, Justin's face lit up. With a big smile, he walked right up to Ondrej, stuck out his hand and introduced himself. After all of the other introductions were made, he graciously signed both Justin's jersey and hat and also Ryan's hat. We then all gathered around a table and visited with Ondrej. Though he spoke with all of us, his clear focus was Justin. What a sight to sit back and watch. The two of them, sitting head-to-head, chatting like old friends. Justin had only been to one Jets game and during the warm up, he shot video of Ondrej on his iPod. He pulled it out and showed Ondrej the video. Ondrej watched it with a smile on his face, making comments to Justin occasionally as he watched. I brought one of Justin's bracelets with me, thinking Justin might want to give it to him. When Justin handed it to him and asked if he would wear it, he replied, "Definitely!" and immediately put it on. At one point Ondrej asked us if we get out to many games. We told him that we have gone to a few, but never as a family as tickets are hard to come by. He sat there thoughtfully for a few moments and asked, "Would you come (to Sunday's game) if I get the tickets?" We were all dumbstruck! Justin managed a, "Uh, yeah, I would go!" We all chuckled and said we would definitely work it into our schedule.
With the arrangements made for the game, it was time to say goodbye. As he was leaving, he said to Justin, "You're going to wear the jersey and the hat to the game?" Of course Justin's response was a resounding yes, at which Ondrej smiled and replied, "Good!" After Ondrej left, a Winnipeg Sun reporter came over and asked if he could ask us some questions. Once the interview was done, he told us that there would probably be something in the Sun on Friday. Imagine our surprise when we saw the Sun the next day! On the front page was a picture of Justin sitting with Pavelec and the headline TRUE HERO. Inside was a full page story and another large picture. Suddenly we have a celebrity in our midst!
Last night we went to the game. Pavelec not only provided 5 tickets to the game but he also gave us passes to join him down by the dressing room after the game. Unfortunately, they lost but we were very excited when the game was over so we could head down to meet with him again. We had a wonderful time. It was so casual, and though I want to say comfortable, there were still nerves visible on both sides. It was surprising and endearing to see that Ondrej Pavelec, NHL goalie, seemed nervous to be talking with us! We asked him some questions, he asked us some questions and we had some pictures taken with him and the whole family. It was also very sweet to see that he was wearing Justin's bracelet.
We are truly blessed. This may sound strange coming from someone whose son has been stricken with cancer. We are only two and a half months into this and so much has happened. We have been at our lowest of lows and highest of highs. With an initial prognosis that did not sound promising, Justin's cancer has been responding to the chemotherapy phenomenally. Justin has had some opportunities that he probably wouldn't have had if he had never been diagnosed with cancer. It touches my heart so much that people want to give whatever they can to bring Justin joy. And the fact that an NHL goalie went above and beyond to spend quality time with us not once, but twice, means more to us than he'll ever know. So, thank you, Ondrej Pavelec, for giving this mom the opportunity to see her son's dream come true. You are one classy man.
A couple of weekends ago, we were sitting around the campfire at the lake playing a game that we sometimes play. We take turns asking a question which everyone else around the fire has to answer. Questions like: If you could go anywhere in the world, where would you go? What's your biggest fear? What's your favourite car? Stuff like that. Trevor asked, "If you could meet anyone in the world, who would it be?" Justin didn't even have to think about it. He answered, "Ondrej Pavelec." Little did he know it would happen just days later. In the business he's in, Trevor meets a lot of people. And as they say, it's all about who you know.
Rob and Carla run the Winnipeg Pet Rescue Shelter. It is a no-kill shelter. That in itself shows the hearts of these people. They have known Trevor for years and we have been to a couple of fundraising galas for their shelter. They also know some of the Jets players and have had a couple of them at their business signing autographs in the past. Trevor decided to make a phone call and ask for a favour. They had heard about Justin's diagnosis and were thrilled and eager to make Justin's dream come true. It was set up rather quickly and we got a call saying that Justin would meet Pavelec the very next week. Justin, of course, knew nothing about it. It was so exciting knowing that we were going to surprise him with this. He would be over the moon!
On Thursday of last week, I went to the school at lunch time to pick up the twins. They, of course, asked where we were going. I told them we were meeting Dad somewhere and nothing else. When we got to the clover leaf at the perimeter and Portage Avenue, Justin asked if we were going to the Ice Plex. I asked, "Why would we be going there?" He told me that the Jets were in training camp. I replied, "Well, I don't know anything about that." ;) With wonder and excitement building, we pulled into the parking lot of the MTS Ice Plex. Disappointment clouded his voice as Justin said, "If I knew we were coming here, I would have brought my jersey!" I then replied, "Well then, I guess it's a good thing I brought it!" We were unsure exactly how this was going to go. We didn't know if we would all be allowed to meet him or if he would sign anything, but I brought sharpies, Justin's Pavelec jersey and hat, and Ryan's Jets hat just in case.
Trevor, Rob and Carla met us at the door. After the boys were introduced to them, Carla asked Justin if he knew what was happening here today. He said he wasn't really sure, but hoped he could see the Jets practicing. She grabbed Justin by both hands and explained that they had arranged for him to meet with Ondrej Pavelec after he was done his work out. With tears in my eyes, I listened to her tell him that they heard about what he was going through and that they wanted to do something really special for him and were glad to have been able to arrange it. We were soon ushered back to a more private place and awaited Ondrej's arrival. When he walked toward us, Justin's face lit up. With a big smile, he walked right up to Ondrej, stuck out his hand and introduced himself. After all of the other introductions were made, he graciously signed both Justin's jersey and hat and also Ryan's hat. We then all gathered around a table and visited with Ondrej. Though he spoke with all of us, his clear focus was Justin. What a sight to sit back and watch. The two of them, sitting head-to-head, chatting like old friends. Justin had only been to one Jets game and during the warm up, he shot video of Ondrej on his iPod. He pulled it out and showed Ondrej the video. Ondrej watched it with a smile on his face, making comments to Justin occasionally as he watched. I brought one of Justin's bracelets with me, thinking Justin might want to give it to him. When Justin handed it to him and asked if he would wear it, he replied, "Definitely!" and immediately put it on. At one point Ondrej asked us if we get out to many games. We told him that we have gone to a few, but never as a family as tickets are hard to come by. He sat there thoughtfully for a few moments and asked, "Would you come (to Sunday's game) if I get the tickets?" We were all dumbstruck! Justin managed a, "Uh, yeah, I would go!" We all chuckled and said we would definitely work it into our schedule.
With the arrangements made for the game, it was time to say goodbye. As he was leaving, he said to Justin, "You're going to wear the jersey and the hat to the game?" Of course Justin's response was a resounding yes, at which Ondrej smiled and replied, "Good!" After Ondrej left, a Winnipeg Sun reporter came over and asked if he could ask us some questions. Once the interview was done, he told us that there would probably be something in the Sun on Friday. Imagine our surprise when we saw the Sun the next day! On the front page was a picture of Justin sitting with Pavelec and the headline TRUE HERO. Inside was a full page story and another large picture. Suddenly we have a celebrity in our midst!
Last night we went to the game. Pavelec not only provided 5 tickets to the game but he also gave us passes to join him down by the dressing room after the game. Unfortunately, they lost but we were very excited when the game was over so we could head down to meet with him again. We had a wonderful time. It was so casual, and though I want to say comfortable, there were still nerves visible on both sides. It was surprising and endearing to see that Ondrej Pavelec, NHL goalie, seemed nervous to be talking with us! We asked him some questions, he asked us some questions and we had some pictures taken with him and the whole family. It was also very sweet to see that he was wearing Justin's bracelet.
We are truly blessed. This may sound strange coming from someone whose son has been stricken with cancer. We are only two and a half months into this and so much has happened. We have been at our lowest of lows and highest of highs. With an initial prognosis that did not sound promising, Justin's cancer has been responding to the chemotherapy phenomenally. Justin has had some opportunities that he probably wouldn't have had if he had never been diagnosed with cancer. It touches my heart so much that people want to give whatever they can to bring Justin joy. And the fact that an NHL goalie went above and beyond to spend quality time with us not once, but twice, means more to us than he'll ever know. So, thank you, Ondrej Pavelec, for giving this mom the opportunity to see her son's dream come true. You are one classy man.
Watching the video on Justin's iPod
Front page of the Winnipeg Sun - Friday, September 13, 2013
(Notice the blue bracelet on Pavelec's right wrist)
After the game on Sunday, September 15, 2013
Monday 2 September 2013
Changes
Round 4 of chemotherapy is complete and Justin came through it virtually unscathed! He had no nausea to speak of this time around. It was amazing! With school starting in three days, it looks like he will be there for the first day with no ill effects. I met with Justin's teacher a couple of weeks ago to discuss his school year and it will look quite different. I explained to her that he will be missing quite a bit of school. She was wonderful and very understanding and accommodating to Justin's situation. She said that he need not worry about any deadlines or falling behind; his main concern should be his health. Since she taught Justin last year, she knows his work habits and writing skills. She said she wants to focus mainly on math with him because he will need those concepts in Grade 9 next year. This took any stress and worry off of Justin's shoulders and he is now looking forward to going back.
This time last year, I was gearing up for my first day back at work after having the summer off. This year it looks a little different for me as well. I have decided to take a year-long leave of absence due to Justin's diagnosis. With his schedule of chemotherapy, possible surgeries, radiation and Cancer Care appointments it just doesn't seem feasible for me to work full time. After seven years back in the workforce, I am once again a stay-at-home mom. I can't think of anything more important for me to be doing this year. I'm a little worried that I may become bored when Justin is well and attending school as normal, but I need to be here if he is feeling too nauseous to go to school or in the event that he becomes ill. The chemo knocks out his defences when it kills his healthy blood cells along with the cancer cells. Thus, he is vulnerable to infection. There will be times when he is unable to go to school just based on that alone. It's all about his 'counts'.
So, this is a year of changes. They say change is good. I'm not sure I would call any of this good, but it is what it is and we do what we have to do. And I have to, no - want to be here for my family. ♥
This time last year, I was gearing up for my first day back at work after having the summer off. This year it looks a little different for me as well. I have decided to take a year-long leave of absence due to Justin's diagnosis. With his schedule of chemotherapy, possible surgeries, radiation and Cancer Care appointments it just doesn't seem feasible for me to work full time. After seven years back in the workforce, I am once again a stay-at-home mom. I can't think of anything more important for me to be doing this year. I'm a little worried that I may become bored when Justin is well and attending school as normal, but I need to be here if he is feeling too nauseous to go to school or in the event that he becomes ill. The chemo knocks out his defences when it kills his healthy blood cells along with the cancer cells. Thus, he is vulnerable to infection. There will be times when he is unable to go to school just based on that alone. It's all about his 'counts'.
So, this is a year of changes. They say change is good. I'm not sure I would call any of this good, but it is what it is and we do what we have to do. And I have to, no - want to be here for my family. ♥
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