Eleven days after his 8th round of chemo was supposed to begin, Justin finally started his 8th round on Tuesday, December 17th. His counts finally came up to 1.37, just above the required 1.0. We were admitted and chemo was started around 5 pm. With the exception of one brief bout of nausea around bedtime Tuesday night, Justin has been feeling great! His spirits have also been high, for the most part.
On admission day, Justin asked me who was coming to visit him this time around. I told him I didn't know if anyone was coming. What he said next broke my heart. He said, "It seems like nobody wants to come see me anymore." How was I to respond to that? It sort of took me by surprise, in a way. Justin has always been a bit of a loner. He often removed himself from being around people by heading off to his room to be alone. Now to hear that he felt this way was so difficult for me, as his Mom. I guess we have gotten into so much of a routine with hospital admissions that it never occurred to me that he would still want or need that, because I don't feel that I need it as much anymore. I was talking to one of the nurses about it and she told me that they see this sort of thing happen all the time. When a child is first diagnosed, there is such an outpouring of people at the hospital showing their love and support that it's almost overwhelming. Then it seems about six months later visitors are fewer and fewer. And we are now six months in.
I'm not writing about this to make anyone feel guilty. Please don't! It's just something for all of us to think about. It was a wake up call for me. I, his own mother, didn't realize how important this was to him so I don't expect anyone else to. We probably all know of someone who spends time in the hospital; whether it be a child, a parent or a grandparent, a friend or neighbour. We may think that they are getting a lot of visitors, or that we would be imposing somehow. I'm not suggesting we all ambush them in their hospital room, but something as simple as a quick call or a text to see if they are up for a visit may make their day. I guess what I'm trying to get at is, we shouldn't assume that because something has become routine that it's any less scary or lonely to go through. I thought that we, his parents, were enough. I was wrong. Justin wants his friends and family around him, especially when he is in the hospital. I suppose it makes his time there a little easier to bear.
It is now Thursday, December 19th and we are at home. One more round of chemo under our belts. We will continue to go for daily radiation, but we will be home for Christmas which is exactly where we want to be.
As I go forward from here, I will think about all of the children and their families who are not fortunate enough to spend Christmas at home this year. I will hold my loved ones a little closer. And I will thank God for the miracle of Jesus' birth and the gifts He has bestowed upon us.
I wish everyone a wonderful Christmas full of love, full of hope and full of miracles to come. May God bless us, every one.
Thursday 19 December 2013
Tuesday 10 December 2013
The Waiting Game
Last Friday, December 6th, we headed to Cancer Care for our pre-chemo blood check, with bags in tow ready to be admitted. We were surprised when the doctor walked into the room and told us that Justin's neutrophils were too low to proceed with chemo. His counts were .5 and need to be at least 1.0 in order to undergo chemo. We, along with the doctor, were perplexed as to why his counts were so low this time around. Every other time they have recovered so quickly and treatments have never been delayed. Justin had received a new drug with his last round of chemo and Justin's oncologist thought that it could be a possibility that his body was reacting to the drug in this way. We were discussing this possibility and the fact that Justin had never reacted this way with previous chemo treatments, when a thought popped into my head. Justin had received the flu shot the previous week. When I reminded the doctor of this, he said that this must be the reason for the low counts. He said it made perfect sense. The only thing we could do was wait until his counts came back up to the appropriate level on their own. This would only be remedied by time. Chemo was not the only thing put on hold though, however. Justin was supposed to start radiation treatments on Friday as well. The decision was made to delay the start of radiation until his next round of chemo was to start, which would hopefully be today.
We again had bags packed and ready for admission this morning at our Cancer Care appointment. I was sure that this would be the day. His counts had to be up. They always recovered so quickly in the past; surely these extra 4 days would do the trick. When the nurse came in and told us that his counts were still too low (.58) I felt deflated. I was confused. I was troubled. My mind started it's journey to that place. That place that I dread. The place where the fear of the unknown takes over. Was this something I should be concerned about? Why is this happening? Things have been going so well. Why now? The doctor has no answers. He can only speculate, as we do. It may be the new drug, the flu shot or a combination of the two. He says he has seen this happen with other patients. Sometimes, he says, their counts can take weeks to recover but with Justin's history this is unexpected. So, again we wait. And I wonder.
The decision was made today, however, to begin his radiation therapy. They didn't want to hold off any longer, not knowing when the next round of chemo would begin. Justin laid down on a 'table' in the form that they made of his body the week before. They took an x-ray. Trevor and I were able to watch in the 'control room' where they pushed buttons on a computer and matched his previous CT scans with the x-ray they just took. The computer automatically adjusted his position on the table 2 mm. It is that precise. We watched on a screen as the machine moved around Justin's body 360 degrees directing the radiation exactly where it needs to go. In a matter of minutes, it was over.
Justin will have a total of 25 sessions of radiation. One down, 24 to go. This means every day, Monday to Friday, for the next five weeks or so we will make the trek down to Cancer Care on top of our regular clinic appointments. Friday we go back for blood work to see if his counts are improved and he is able to undergo the next round of chemo.
The past few days have been a little unsettling. I feel like I'm being taught a lesson. Things have been going so well with Justin, maybe too well. Maybe I've been taking his 'wellness' for granted. I never imagined that we would be in this situation. Other patients have had their treatments delayed for one reason or another, but that doesn't happen to us. While I don't think that this is anything serious, it causes me concern because I don't know. And it's that unknown that scares me.
We again had bags packed and ready for admission this morning at our Cancer Care appointment. I was sure that this would be the day. His counts had to be up. They always recovered so quickly in the past; surely these extra 4 days would do the trick. When the nurse came in and told us that his counts were still too low (.58) I felt deflated. I was confused. I was troubled. My mind started it's journey to that place. That place that I dread. The place where the fear of the unknown takes over. Was this something I should be concerned about? Why is this happening? Things have been going so well. Why now? The doctor has no answers. He can only speculate, as we do. It may be the new drug, the flu shot or a combination of the two. He says he has seen this happen with other patients. Sometimes, he says, their counts can take weeks to recover but with Justin's history this is unexpected. So, again we wait. And I wonder.
The decision was made today, however, to begin his radiation therapy. They didn't want to hold off any longer, not knowing when the next round of chemo would begin. Justin laid down on a 'table' in the form that they made of his body the week before. They took an x-ray. Trevor and I were able to watch in the 'control room' where they pushed buttons on a computer and matched his previous CT scans with the x-ray they just took. The computer automatically adjusted his position on the table 2 mm. It is that precise. We watched on a screen as the machine moved around Justin's body 360 degrees directing the radiation exactly where it needs to go. In a matter of minutes, it was over.
Justin will have a total of 25 sessions of radiation. One down, 24 to go. This means every day, Monday to Friday, for the next five weeks or so we will make the trek down to Cancer Care on top of our regular clinic appointments. Friday we go back for blood work to see if his counts are improved and he is able to undergo the next round of chemo.
The past few days have been a little unsettling. I feel like I'm being taught a lesson. Things have been going so well with Justin, maybe too well. Maybe I've been taking his 'wellness' for granted. I never imagined that we would be in this situation. Other patients have had their treatments delayed for one reason or another, but that doesn't happen to us. While I don't think that this is anything serious, it causes me concern because I don't know. And it's that unknown that scares me.
Tuesday 3 December 2013
Close Encounters of A Different Kind
Last week was another busy one. The radiation oncologist called on Monday and wanted Justin to come in on Tuesday to get fitted for the form they will use during his radiation. It's quite a site to witness.
The room is dimly lit. There are at least five people in the room; besides Trevor, Justin and myself. Justin is lying on his back on a black bag filled with some sort of pellets and people are gathered around him using their hands to push and prod it in place against his body. There is a lot of chatter as they discuss Justin's position and assess his comfort. The bag is attached to a vacuum pump and all of the air is sucked out of the bag causing the pellets to compress, taking on the shape of Justin's upper body. Several adjustments are necessary. Inflating and manipulating the bag, deflating it again, several times until they are happy with his positioning. The result is a rigid, cast-like form that is shaped exactly to the contours of his body and will keep him still and in the correct position while he is undergoing the treatments. They take a couple of CT scans to test for accuracy. While he is lying there on his back, I can see red laser markers criss-crossing his body. It almost seems as though he has been abducted by aliens and is undergoing some strange experimentation. He is given tattoos on his chest; just 2 small dots about 3 inches apart on his sternum. The tattoos are permanent and are necessary for proper alignment during each treatment. The whole process is very precise. They are essentially mapping out the exact coordinates that they will use to be sure the radiation will be directed exactly where it needs to go every time. It's like a GPS of Justin's tumour site. The whole procedure took a couple of hours and we were headed home with a start date for radiation in hand: Friday, December 6th. This is also the start date of Justin's next round of chemo.
Two days later, we get another call from the radiation oncologist telling us that after reviewing the scans, he is not satisfied that they have a good result with the positioning. So, back we go on Friday after our Cancer Care appointment and the team spends another couple of hours making adjustments to the form and giving Justin another mark on his chest. This one is a small cross, or plus sign, and is not permanent. They need to be so sure that alignment is perfect because, we were told, the machine will not even turn on if the markings are not lined up precisely. It's a little unnerving, but they are confident that they now have everything as it should be so it appears we are a go for Friday.
This week has proven to be interesting around here as well. Along with concern and anxiety about Justin starting radiation, we now have a new challenge. Ryan suffered a bad hit during a hockey game on Sunday night and has a broken collar bone. It seems that I was destined to be a nurse and the past 5 months has been my practicum!
We received the most phenomenal news regarding the pathology from Justin's tumour and rib. They found ZERO viable cancer cells under the microscope! Praise the Lord! Justin is feeling so great and has also been given a wonderful report from his surgeon, who says she is very happy with his recovery and does not need to see him again until his central line needs to come out at the end of his treatments. He is in great spirits; happy to go to school and just loving life! He is so excited about Christmas this year. We are going to buy some gifts for the kids who will be in the hospital over the Christmas season. Since Justin's cancer diagnosis, we have felt fear, anguish and heartache, but we have also been blessed with positive and encouraging results and we have to believe that he will beat this. We have so much to be thankful for and it just seems right to share some blessings with those who may not be feeling as optimistic as we are. Kids should be free to be kids and enjoy the excitement and wonder of Christmas. Our wish is to bring them some joy and make them forget how sick they are, even if only for a moment.
The room is dimly lit. There are at least five people in the room; besides Trevor, Justin and myself. Justin is lying on his back on a black bag filled with some sort of pellets and people are gathered around him using their hands to push and prod it in place against his body. There is a lot of chatter as they discuss Justin's position and assess his comfort. The bag is attached to a vacuum pump and all of the air is sucked out of the bag causing the pellets to compress, taking on the shape of Justin's upper body. Several adjustments are necessary. Inflating and manipulating the bag, deflating it again, several times until they are happy with his positioning. The result is a rigid, cast-like form that is shaped exactly to the contours of his body and will keep him still and in the correct position while he is undergoing the treatments. They take a couple of CT scans to test for accuracy. While he is lying there on his back, I can see red laser markers criss-crossing his body. It almost seems as though he has been abducted by aliens and is undergoing some strange experimentation. He is given tattoos on his chest; just 2 small dots about 3 inches apart on his sternum. The tattoos are permanent and are necessary for proper alignment during each treatment. The whole process is very precise. They are essentially mapping out the exact coordinates that they will use to be sure the radiation will be directed exactly where it needs to go every time. It's like a GPS of Justin's tumour site. The whole procedure took a couple of hours and we were headed home with a start date for radiation in hand: Friday, December 6th. This is also the start date of Justin's next round of chemo.
Two days later, we get another call from the radiation oncologist telling us that after reviewing the scans, he is not satisfied that they have a good result with the positioning. So, back we go on Friday after our Cancer Care appointment and the team spends another couple of hours making adjustments to the form and giving Justin another mark on his chest. This one is a small cross, or plus sign, and is not permanent. They need to be so sure that alignment is perfect because, we were told, the machine will not even turn on if the markings are not lined up precisely. It's a little unnerving, but they are confident that they now have everything as it should be so it appears we are a go for Friday.
This week has proven to be interesting around here as well. Along with concern and anxiety about Justin starting radiation, we now have a new challenge. Ryan suffered a bad hit during a hockey game on Sunday night and has a broken collar bone. It seems that I was destined to be a nurse and the past 5 months has been my practicum!
We received the most phenomenal news regarding the pathology from Justin's tumour and rib. They found ZERO viable cancer cells under the microscope! Praise the Lord! Justin is feeling so great and has also been given a wonderful report from his surgeon, who says she is very happy with his recovery and does not need to see him again until his central line needs to come out at the end of his treatments. He is in great spirits; happy to go to school and just loving life! He is so excited about Christmas this year. We are going to buy some gifts for the kids who will be in the hospital over the Christmas season. Since Justin's cancer diagnosis, we have felt fear, anguish and heartache, but we have also been blessed with positive and encouraging results and we have to believe that he will beat this. We have so much to be thankful for and it just seems right to share some blessings with those who may not be feeling as optimistic as we are. Kids should be free to be kids and enjoy the excitement and wonder of Christmas. Our wish is to bring them some joy and make them forget how sick they are, even if only for a moment.
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