Monday morning began with good news. Justin's temperature had remained normal throughout the night and up to this point has been stable. The physiotherapists were back with more things for Justin to do. They have had him standing up and he has even taken a few steps! He has also been doing some leg and arm exercises to keep his muscles from tightening up from laying around all day and night. He continues to do the deep breathing as well.
Today they took out his chest tube and his wound catheter. He is far less encumbered with tubes now so moving around is much easier and slightly less painful. The surgeon has told the physiotherapist that she wants him to take an actual walk by the end of today so we have that to look forward to! (He's actually NOT looking forward to it at all!)
The plan is to disconnect the ketamine infusion tomorrow and the morphine infusion on Thursday, leaving him with only his morphine button to press as needed. The general consensus is that he will go home on Thursday or Friday if things keep progressing well and he is tolerating the the decrease in pain meds. We just need to get him eating now. The pain medication has suppressed his appetite so he has eaten very little over the past four days. Hopefully, weaning him off these meds will increase it again so he can regain some strength.
I can see improvements in Justin already since they took out the chest tube. He is adjusting his positioning in bed and looks to be far less uncomfortable doing so. He is very sleepy though, as they gave him diazepam before the removal, and he has been sleeping it off throughout the afternoon. All in all, it's been a good day and it seems we are on the right track toward recovery. It's only going to get better and better from here on in!
Tuesday, 5 November 2013
Sunday, 3 November 2013
The Long Road From OR to Recovery
Justin had his surgery on Friday. It's only been two days but it seems like a week. So many emotions in such a short amount of time. And it's not over yet.
Justin was taken into the OR at about 12:30 on Friday and we didn't see him again until after 9 pm. We got word from one of the OR nurses at 1:45 that they had started the procedure at about 1:30. We were told that the procedure would take about 4 1/2 hours but they said they would give us updates every couple of hours or so. Around 3:45 we got a call saying that things were going along fine and they were still working on exposing the tumour. My mind was blown! Two hours into the procedure and they hadn't even gotten to the tumour yet. That speaks of the delicate nature of this type of surgery.
Our next update came at approximately 6:00. We heard that the surgeon only needed to take a 2-3 inch section of the involved rib, and was able to leave the ribs on either side. What great news! She also removed the tumour, but was a little disappointed that she wasn't able to get it all out in one piece. She did find a couple of small areas of concern on the lung so she removed two small wedges from there as well. The neurosurgeon was able to scrape out the areas that were involved around and between the vertebrae and another small section of that rib that joins up with the vertebrae, but did not need to remove any part of the actual vertebrae itself. We were told that the surgeon was just closing up and should be done around 7:00.
Just after 7 pm the surgeon came out to talk to us. She told us that Justin was awake and talking. He said he's fine! He woke up not needing any tubes down his nose or his throat. He had a chest tube in to drain any fluid from the lung cavity, a catheter and a wound catheter that infuses anaesthetic directly into the wound site. The surgeon explained that she was unable to get the tumour out in one piece for fear of further damaging the muscles and structure of Justin's back and because of that, there would most likely be residual cells left behind. Not the best case scenario, but more chemo and radiation will be done to hopefully get rid of that. He was taken to the PICU (Pediatric Intensive Care Unit) and we would be able to see him once he was settled in.
Around 9:00 pm we were finally able to see Justin. He was hooked up to so many tubes and wires but he looked good! He was hooked up to a continuous infusion of morphine and ketamine along with a self-administering morphine button, he had the wound catheter putting freezing directly into the wound and he had wires monitoring blood pressure, oxygen and so on. I was surprised at how alert he was considering all of the drugs he had on board! He told us that he was sore but felt okay. The plan was for him to be in the PICU for 2-3 days and since they didn't have 'beds' in there we had booked a room at the Canad Inn attached to the hospital. We didn't stay too long as he was pretty tired, so we said goodnight and went off to the hotel.
Saturday
In the morning we were pleased to hear that through the night his vitals were stable and they were
thinking of moving him to the ward that afternoon. By 1:00, less than 24 hours post-op, he was being moved to the surgical ward. Things went pretty well during the day. He was off oxygen and his vitals continued to be stable and is pain was being well managed. Just as I was about to head off to bed for the night, Justin spiked a fever of 38.9. My heart sank. This was my worst fear. This could mean infection. The doctor said it was too early to be alarmed. They would administer Tylenol and Advil and see how it went during the night. Justin wanted to be alone in his room, so off I went to the hotel. I was assured that they would call me if there were any issues that I needed to be aware of or if Justin needed me. Such a brave young man.
Sunday
I walked into his room in the morning and was surprised to see that he was back on oxygen. The nurse told me his levels had dropped a bit through the night so they put the nasal prongs back in his nose. It wasn't dangerously low, just at the bottom end of where they like to see it. His temperature was back down, though, but they said if it spiked again they would take blood and urine cultures to check for infection. At around 10 am his temp spiked again. They took blood and urine samples to send off but would not have results for 2-3 days. The decision was made to take the catheter out because it is a prime site for bacteria to enter the body and cause infection. One less tube in his body! The physiotherapist came in later in the day to get Justin doing some deep breathing exercises to help with re-inflating his lung. Since they did a wedge resection of the left lung, it was collapsed and it takes a bit of time to get back to normal capacity. His oxygen levels did come up during the day, so they took him off the oxygen and by bedtime Sunday night, his fever had come down some as well.
What a ride this has been! So many emotions have been felt...fear, worry, relief, hope. Justin has shown so much strength throughout this whole journey. Fighting through blinding pain (his description) and overcoming many obstacles, all the while maintaining his sense of humour. Moments like when he is lying there in bed with his eyes closed and you think he's sleeping, he chimes in on the conversation with a witty remark. Never cracking a smile or opening his eyes, but out it comes. I have learned so much from him over the past few months. He has opened my eyes to the person that he truly is. And I have never been more proud to call him my son.
Justin was taken into the OR at about 12:30 on Friday and we didn't see him again until after 9 pm. We got word from one of the OR nurses at 1:45 that they had started the procedure at about 1:30. We were told that the procedure would take about 4 1/2 hours but they said they would give us updates every couple of hours or so. Around 3:45 we got a call saying that things were going along fine and they were still working on exposing the tumour. My mind was blown! Two hours into the procedure and they hadn't even gotten to the tumour yet. That speaks of the delicate nature of this type of surgery.
Our next update came at approximately 6:00. We heard that the surgeon only needed to take a 2-3 inch section of the involved rib, and was able to leave the ribs on either side. What great news! She also removed the tumour, but was a little disappointed that she wasn't able to get it all out in one piece. She did find a couple of small areas of concern on the lung so she removed two small wedges from there as well. The neurosurgeon was able to scrape out the areas that were involved around and between the vertebrae and another small section of that rib that joins up with the vertebrae, but did not need to remove any part of the actual vertebrae itself. We were told that the surgeon was just closing up and should be done around 7:00.
Just after 7 pm the surgeon came out to talk to us. She told us that Justin was awake and talking. He said he's fine! He woke up not needing any tubes down his nose or his throat. He had a chest tube in to drain any fluid from the lung cavity, a catheter and a wound catheter that infuses anaesthetic directly into the wound site. The surgeon explained that she was unable to get the tumour out in one piece for fear of further damaging the muscles and structure of Justin's back and because of that, there would most likely be residual cells left behind. Not the best case scenario, but more chemo and radiation will be done to hopefully get rid of that. He was taken to the PICU (Pediatric Intensive Care Unit) and we would be able to see him once he was settled in.
Around 9:00 pm we were finally able to see Justin. He was hooked up to so many tubes and wires but he looked good! He was hooked up to a continuous infusion of morphine and ketamine along with a self-administering morphine button, he had the wound catheter putting freezing directly into the wound and he had wires monitoring blood pressure, oxygen and so on. I was surprised at how alert he was considering all of the drugs he had on board! He told us that he was sore but felt okay. The plan was for him to be in the PICU for 2-3 days and since they didn't have 'beds' in there we had booked a room at the Canad Inn attached to the hospital. We didn't stay too long as he was pretty tired, so we said goodnight and went off to the hotel.
Saturday
In the morning we were pleased to hear that through the night his vitals were stable and they were
thinking of moving him to the ward that afternoon. By 1:00, less than 24 hours post-op, he was being moved to the surgical ward. Things went pretty well during the day. He was off oxygen and his vitals continued to be stable and is pain was being well managed. Just as I was about to head off to bed for the night, Justin spiked a fever of 38.9. My heart sank. This was my worst fear. This could mean infection. The doctor said it was too early to be alarmed. They would administer Tylenol and Advil and see how it went during the night. Justin wanted to be alone in his room, so off I went to the hotel. I was assured that they would call me if there were any issues that I needed to be aware of or if Justin needed me. Such a brave young man.
Sunday
I walked into his room in the morning and was surprised to see that he was back on oxygen. The nurse told me his levels had dropped a bit through the night so they put the nasal prongs back in his nose. It wasn't dangerously low, just at the bottom end of where they like to see it. His temperature was back down, though, but they said if it spiked again they would take blood and urine cultures to check for infection. At around 10 am his temp spiked again. They took blood and urine samples to send off but would not have results for 2-3 days. The decision was made to take the catheter out because it is a prime site for bacteria to enter the body and cause infection. One less tube in his body! The physiotherapist came in later in the day to get Justin doing some deep breathing exercises to help with re-inflating his lung. Since they did a wedge resection of the left lung, it was collapsed and it takes a bit of time to get back to normal capacity. His oxygen levels did come up during the day, so they took him off the oxygen and by bedtime Sunday night, his fever had come down some as well.
What a ride this has been! So many emotions have been felt...fear, worry, relief, hope. Justin has shown so much strength throughout this whole journey. Fighting through blinding pain (his description) and overcoming many obstacles, all the while maintaining his sense of humour. Moments like when he is lying there in bed with his eyes closed and you think he's sleeping, he chimes in on the conversation with a witty remark. Never cracking a smile or opening his eyes, but out it comes. I have learned so much from him over the past few months. He has opened my eyes to the person that he truly is. And I have never been more proud to call him my son.
Monday, 28 October 2013
The Tough Gets Tougher
This week, on Friday, November 1st, Justin will be having surgery at 11:00 am. We knew that this was a probability from day one. At this point in his treatment plan, after six rounds of chemotherapy, the plan was to re-assess and decide whether or not they would go in and try to remove the tumour. So this past week, Justin had an MRI, bone scan, CT scan and consultation with the surgeon. After reviewing all of the scan results, the surgeon has decided that she is going ahead with it. The surgery will be a lot more involved than we initially thought it would be. She will remove the tumour and some surrounding tissue, remove the rib that the tumour started in and possibly one rib on either side of it and may also remove a section of his lung. Because the tumour had tendrils extending into his spinal canal, there will be a neurosurgeon in the OR as well to remove any residual tumour surrounding his spinal cord. There will also be a plastic surgeon on stand-by in the event that there needs to be any reconstruction.
As we were sitting in the surgeon's office listening to her list the things that she will be doing to our son, I was terrified. Justin was in the room hearing it too, so I could only imagine what he was feeling. She explained that he would be waking up with a chest tube, a catheter and possibly a tube down his esophagus. He was visibly upset by this information as he had a chest tube inserted at the beginning of all of this and it was extremely painful. She also spoke of the possibility of weakened muscles around his shoulder blade area, nerve disruption that could cause loss of sensation and since he is still growing, removing the ribs could cause scoliosis. My heart broke to hear this and I could see that Justin was distraught. Playing goalie in neighbourhood street hockey games is very important to Justin. He lives for it. And in his mind, he would never play again.
We went home from that appointment with a lot to think about. Justin went to his room and when I went to check on him, he said that he didn't want to talk about it and wanted to be alone. I knew how I felt...my insides were in turmoil and I was sick with worry. Knowing that Justin was hurting and trying to deal with it on his own was almost more than I could bear. All I could do was reassure him that he did not need to go through this alone.
The days following were better as he was distracted with school and friends. We have several more appointments this week before the surgery. We meet with the anaesthetist and the radiation oncologist tomorrow, the neurosurgeon on Wednesday and he has another echo cardiogram scheduled for Thursday. Thrown into the mix to add to the distraction is a Jets game to watch on TV (which Justin plans his schedule around and never misses) and Halloween. Justin has said that this will be his last year to go trick-or-treating, as he is heading off to high school next year. We also need to find time to celebrate big brother Brennan's birthday as he turns 18 on the day of Justin's surgery.
The next few weeks will be tough...physically and emotionally exhausting for all of us. We will, as always, have an amazing support system to help us through. Our family will be with us at the hospital during Justin's surgery to sit with us, pray with us, hold a hand or give a hug when needed. They will help us with getting Ryan to hockey while we are at the hospital with Justin, which should be about five days if everything goes well. We also have our church family gathering together on Friday at 11:00 to pray through the entirety of Justin's surgery.
So, if you are a praying person, I ask that you please also pray for Justin. He has a challenging road ahead. He will need strength to recover from the pain of the surgery and also the emotional piece that will come from his physical limitations as he is recovering. He will get through this, of that I am sure. He is an amazingly strong young man. But as strong as he is, he is still a 13 year old boy who is going to endure more than he should have to.
As we were sitting in the surgeon's office listening to her list the things that she will be doing to our son, I was terrified. Justin was in the room hearing it too, so I could only imagine what he was feeling. She explained that he would be waking up with a chest tube, a catheter and possibly a tube down his esophagus. He was visibly upset by this information as he had a chest tube inserted at the beginning of all of this and it was extremely painful. She also spoke of the possibility of weakened muscles around his shoulder blade area, nerve disruption that could cause loss of sensation and since he is still growing, removing the ribs could cause scoliosis. My heart broke to hear this and I could see that Justin was distraught. Playing goalie in neighbourhood street hockey games is very important to Justin. He lives for it. And in his mind, he would never play again.
We went home from that appointment with a lot to think about. Justin went to his room and when I went to check on him, he said that he didn't want to talk about it and wanted to be alone. I knew how I felt...my insides were in turmoil and I was sick with worry. Knowing that Justin was hurting and trying to deal with it on his own was almost more than I could bear. All I could do was reassure him that he did not need to go through this alone.
The days following were better as he was distracted with school and friends. We have several more appointments this week before the surgery. We meet with the anaesthetist and the radiation oncologist tomorrow, the neurosurgeon on Wednesday and he has another echo cardiogram scheduled for Thursday. Thrown into the mix to add to the distraction is a Jets game to watch on TV (which Justin plans his schedule around and never misses) and Halloween. Justin has said that this will be his last year to go trick-or-treating, as he is heading off to high school next year. We also need to find time to celebrate big brother Brennan's birthday as he turns 18 on the day of Justin's surgery.
The next few weeks will be tough...physically and emotionally exhausting for all of us. We will, as always, have an amazing support system to help us through. Our family will be with us at the hospital during Justin's surgery to sit with us, pray with us, hold a hand or give a hug when needed. They will help us with getting Ryan to hockey while we are at the hospital with Justin, which should be about five days if everything goes well. We also have our church family gathering together on Friday at 11:00 to pray through the entirety of Justin's surgery.
So, if you are a praying person, I ask that you please also pray for Justin. He has a challenging road ahead. He will need strength to recover from the pain of the surgery and also the emotional piece that will come from his physical limitations as he is recovering. He will get through this, of that I am sure. He is an amazingly strong young man. But as strong as he is, he is still a 13 year old boy who is going to endure more than he should have to.
Monday, 14 October 2013
So Much To Be Thankful For
It is Thanksgiving Day and I wake up in a hospital room in a pull out chair/bed next to Justin feeling more thankful on this Thanksgiving than ever.
Late last night and the night before I lay here in this "bed" hearing the sound of a child in the next room sobbing and coughing for hours. She is very sick and she is alone. Knowing that this ward is primarily cancer stricken kids or kids with other very serious conditions, and knowing that her mom is not lying in a bed next to her breaks my heart. The nurse tells me that they can't force parents to stay with their children so this happens more than I would care to think. A couple of doors down is another sweet young girl, a few years younger than Justin, who also has Ewing's Sarcoma. I have spoken with her father on several occasions and her treatment is not going so well. She is hospitalized right now, not for chemo, but because she is sick. Her chemo treatments have been delayed due to her illness.
We are blessed. For whatever reason, God chooses to work miracles in Justin's life. Justin has now finished six rounds of chemo and not once has his treatment been delayed. His counts have always come back to a level that is appropriate for chemo and he has never had any other illness or infection to prevent it. From what I've been told, this is nearly unheard of. He has also made it through this last round with virtually no nausea to speak of.
As I was lying awake last night, I was counting our blessings. We have many. We are surrounded by family and friends who love, support and pray for us. We have our extended family of nurses here on CK5 and at the Cancer Care clinic who do all they can to make this journey a little easier to bear. We have a connection with Ondrej, who continues to reach out to Justin, keeping his dream alive. And we have each other. A family who wouldn't even dream of leaving one of their own alone in a hospital room to fight one of the scariest battles they will ever have to fight.
So, as I silently wept for the child who cried herself to sleep last night, I said a prayer for her and all of the other sick kids here to find comfort, peace and healing. As Justin said to me last night, "It's just not right. No kid should have to be alone in a place like this." Wise words from a young man who has had to grow up too fast.
Late last night and the night before I lay here in this "bed" hearing the sound of a child in the next room sobbing and coughing for hours. She is very sick and she is alone. Knowing that this ward is primarily cancer stricken kids or kids with other very serious conditions, and knowing that her mom is not lying in a bed next to her breaks my heart. The nurse tells me that they can't force parents to stay with their children so this happens more than I would care to think. A couple of doors down is another sweet young girl, a few years younger than Justin, who also has Ewing's Sarcoma. I have spoken with her father on several occasions and her treatment is not going so well. She is hospitalized right now, not for chemo, but because she is sick. Her chemo treatments have been delayed due to her illness.
We are blessed. For whatever reason, God chooses to work miracles in Justin's life. Justin has now finished six rounds of chemo and not once has his treatment been delayed. His counts have always come back to a level that is appropriate for chemo and he has never had any other illness or infection to prevent it. From what I've been told, this is nearly unheard of. He has also made it through this last round with virtually no nausea to speak of.
As I was lying awake last night, I was counting our blessings. We have many. We are surrounded by family and friends who love, support and pray for us. We have our extended family of nurses here on CK5 and at the Cancer Care clinic who do all they can to make this journey a little easier to bear. We have a connection with Ondrej, who continues to reach out to Justin, keeping his dream alive. And we have each other. A family who wouldn't even dream of leaving one of their own alone in a hospital room to fight one of the scariest battles they will ever have to fight.
So, as I silently wept for the child who cried herself to sleep last night, I said a prayer for her and all of the other sick kids here to find comfort, peace and healing. As Justin said to me last night, "It's just not right. No kid should have to be alone in a place like this." Wise words from a young man who has had to grow up too fast.
Tuesday, 1 October 2013
Life Can Be So Fragile; Please Protect It
A couple of weeks ago I saw a post on Facebook about a new measles strain making an appearance in Canada. Since then, immunity, or lack there of, has been on my mind more and more.
When a child (or anyone for that matter) has cancer and undergoes chemotherapy treatments their immunity is compromised. It is a constant worry, as the mother of a child with cancer, that my child will catch something when his defences are down. Everything, from the common cold to strep throat, poses a potential risk to my child's life. These illness are rampant, especially this time of year, and there is really nothing anyone can do, outside of proper hand washing, to prevent these infections. So we send him to school when he is well enough to go and hope for the best. What strikes a greater fear within me is the fact that there are far more dangerous diseases out there now making a comeback. These diseases were pretty much non-existent due to widespread vaccination of children. Seemingly simple childhood diseases like measles and chicken pox can cause huge problems and can even be fatal. And that's for a 'healthy' child. Add into the mix a child who has undergone months of chemotherapy, has had their immunization wiped out and has no white blood cells to speak of to fight off these infections and it scares me to death what the outcome may be.
These types of diseases didn't have to come back. They could have stayed dormant with no one to infect if so many people had not decided to opt out of immunizing their children. I'm not normally a 'soap box' type of person but I'm standing on one today because I am fighting for my child's life and the lives of other children out there who were unlucky enough to be diagnosed with cancer and are forced to deal with all that goes along with it. We did our part, as parents, and had all of our children vaccinated. Unfortunately, Justin most likely has none of those immunities left. If I could keep him in a bubble I would. I am a mother and my child's greatest advocate and would do anything to protect him. I'm not suggesting that those who choose not to immunize their children don't feel that same instinct to protect. I'm sure you had your reasons and I'm not judging anyone. My only hope is that the diseases that you chose not to vaccinate against never make their way into my son's body. It would be a tragedy for him, or any immuno-compromised child, to have to suffer needlessly when they have so much else to deal with. The consequences could be deadly. Plain and simple.
As I write this today, Justin is at home. After today's Cancer Care appointment, he was advised not to return to school. His counts are in the ditch. He needs to return to Cancer Care tomorrow for a blood transfusion. So, though my last entry speaks of forgetting sometimes that Justin has cancer, these are the in-your-face reminders that he does. He looks good, but looks can be deceiving. Within his veins a different story is told. And it is that story that runs through my head incessantly as I pray that he doesn't get sick.
When a child (or anyone for that matter) has cancer and undergoes chemotherapy treatments their immunity is compromised. It is a constant worry, as the mother of a child with cancer, that my child will catch something when his defences are down. Everything, from the common cold to strep throat, poses a potential risk to my child's life. These illness are rampant, especially this time of year, and there is really nothing anyone can do, outside of proper hand washing, to prevent these infections. So we send him to school when he is well enough to go and hope for the best. What strikes a greater fear within me is the fact that there are far more dangerous diseases out there now making a comeback. These diseases were pretty much non-existent due to widespread vaccination of children. Seemingly simple childhood diseases like measles and chicken pox can cause huge problems and can even be fatal. And that's for a 'healthy' child. Add into the mix a child who has undergone months of chemotherapy, has had their immunization wiped out and has no white blood cells to speak of to fight off these infections and it scares me to death what the outcome may be.
These types of diseases didn't have to come back. They could have stayed dormant with no one to infect if so many people had not decided to opt out of immunizing their children. I'm not normally a 'soap box' type of person but I'm standing on one today because I am fighting for my child's life and the lives of other children out there who were unlucky enough to be diagnosed with cancer and are forced to deal with all that goes along with it. We did our part, as parents, and had all of our children vaccinated. Unfortunately, Justin most likely has none of those immunities left. If I could keep him in a bubble I would. I am a mother and my child's greatest advocate and would do anything to protect him. I'm not suggesting that those who choose not to immunize their children don't feel that same instinct to protect. I'm sure you had your reasons and I'm not judging anyone. My only hope is that the diseases that you chose not to vaccinate against never make their way into my son's body. It would be a tragedy for him, or any immuno-compromised child, to have to suffer needlessly when they have so much else to deal with. The consequences could be deadly. Plain and simple.
As I write this today, Justin is at home. After today's Cancer Care appointment, he was advised not to return to school. His counts are in the ditch. He needs to return to Cancer Care tomorrow for a blood transfusion. So, though my last entry speaks of forgetting sometimes that Justin has cancer, these are the in-your-face reminders that he does. He looks good, but looks can be deceiving. Within his veins a different story is told. And it is that story that runs through my head incessantly as I pray that he doesn't get sick.
Monday, 23 September 2013
Five Down, Eight To Go
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.
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.
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
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