It has been a busy week and a half, but we are getting close to being finished with all the tests and scans that are necessary to ensure that Justin is clear. It turns out that they will not be waiting until after his radiation therapy to do all of his scans. As a matter of fact, the full-body bone scan and the CT of his chest have already been completed, and the MRI of his chest is scheduled for tomorrow. We have already received the most wonderful news that Justin's bone scan was clear! NED! (No evidence of disease). Thank God for these results! One down, two to go! We are hoping and praying that the CT and MRI will give us the same results. He also had an echo cardiogram and an EKG last week, both of which showed that the chemotherapy has done no damage to his heart so far! The oncologist cautioned us that though this is good news, heart damage can be a long-term effect of one of Justin's chemotherapy drugs and may show up at some point in the future. We are just thankful for the good news up to this point and cannot worry about what the future may hold.
When Justin was first diagnosed, things were dire. We felt helpless and hopeless; our world was spiralling down into a pit of despair that seemed too deep to ever emerge from. It was heart-wrenching to watch Justin in so much pain; so angry and terrified of what being diagnosed with cancer could mean. I sat beside him in the hospital bed wiping his tears, rubbing his back, doing anything I could think of to try to make him more comfortable; longing just to hold him when he didn't want to be held. More than once, Ryan was in the room witnessing this and I could see the tears in his eyes and the pain on his face. He was being ripped apart, seeing his twin brother going through this horrible ordeal. Being their mother, it was my job to comfort them and it seemed there was nothing I could do. I was in such a terrible state myself that I hardly had it in me to be a comfort to my children. At the end of Justin's first hospital stay, when we had just found out that he had cancer, Trevor, Ryan, Justin and I were in the truck on our way home. Trevor put on a song by Rascal Flatts called Won't Let Go. I have always loved that song but never paid too much attention to the lyrics before, thinking it was just another love song. He told me that one night on their way home from visiting Justin in the hospital, Ryan told him that this song reminded him of what Justin was going through. As I listened to the lyrics, tears began to fall, turning into sobs as I realized that it was describing exactly how I felt sitting in that hospital bed next to Justin. I dried his eyes, wished I could fight his fight and wanted only to hold him tight and not let go.
It wasn't until recently, last weekend to be exact, that the song took on a new meaning for me. As we were driving home from West Hawk after going to see our new seasonal campsite, Ryan was playing DJ and put that song on. As I listened, I heard it in a different way. Of course, it was still what we all wanted to do for Justin, but it was also what God wanted to do and DID for me. He stood by me, he helped me through when I'd done all I could do and I couldn't cope; he held me tight and didn't let me go when I was going through the worst pain of my life. Again the tears flowed as I listened, but this time they were happy tears. Tears of joy realizing that my God has loved me through the biggest storm in my life and brought me to the other side of it with my son, who has beaten cancer.
Won't Let Go - Rascal Flatts
It's like a storm
That cuts a path
It's breaks your will
It feels
like that
You think you're lost
But you're not lost on your own
You're
not alone
I will stand by you
I will help you through
When you've done
all you can do
If you can't cope
I will dry your eyes
I will fight your
fight
I will hold you tight
And I wont let go
It hurts my
heart
To see you cry
I know it's dark
This part of life
Oh it finds
us all
And we're too small
To stop the rain
Oh but when it
rains
I will stand by you
I will help you through
When you've done
all you can do
And you can't cope
I will dry your eyes
I will fight
your fight
I will hold you tight
And I won't let you fall
Don't be
afraid to fall
I'm right here to catch you
I wont let you down
It wont
get you down
You're gonna make it
Yea I know you can make it
Cause I
will stand by you
I will help you through
When you've done all you can
do
And you can't cope
And I will dry your eyes
I will fight your
fight
I will hold you tight
And I won't let go
Oh I'm gonna hold
you
And I won't let go
Wednesday 14 May 2014
Monday 5 May 2014
The End of the Road
Well, we made it! Justin had his last chemo treatment last week and apparently he saved the worst for last. Things started out fine on Tuesday, that day's chemo was finished by about 5 pm and Justin felt great. Even ate a steak for supper! Wednesday morning, on the other hand, was an entirely different story. Justin was sicker than he has been since the first couple of treatments. I wished I could take the misery from him, but all I could do was rub his back and encourage him that this was the last time that he would ever have to endure this. He was not receptive to this 'encouragement', to say the least. He was so angry, retching over a basin; tormented by the toxins inside his body. It tore me apart to see him like this. I felt so helpless; I did the only thing I could think of. I sent out a text asking for prayer for Justin. The replies came in; people were praying for him. Within a few minutes Justin settled down, the nausea held at bay for the time being. PTL! He generally felt horrible for the rest of the day, with another particularly rough patch in the evening, but he made it through. Thursday was discharge day, and while he still felt awful, he was happy to be getting out of there.
Leaving CK5 for the final time brought a mixture of emotions for me. While I was thrilled that this was the last time we would be admitted for chemotherapy, saying goodbye to the nurses and support staff was hard. Through tears, I gave many hugs and vowed we would come back but ONLY FOR VISITS! We appreciate all of them for the kindness, compassion and support they have extended to us over the past ten months. We formed relationships and had special connections with them. One of the nurses even switched her shift so that she could be there for Justin's last chemo.
I had this idea in my head that once chemo was finished, things would finally settle down and there would be less running around to appointments and such. It seems I was wrong; for the time being anyway. This month will be a busy one. We will be at Radiation Therapy today to have a simulation CT done to get Justin lined up for his next round of radiation. We will have an Echo Cardiogram and EKG done later in the week, along with a clinic appointment at Cancer Care. Next week, we have another clinic appointment and we see the surgeon for a pre-op so Justin can have his central line removed on the 21st. Radiation will begin around that time as well, which will be daily for 10-15 days from what I understand. (Since he had several spots on his lungs when he was initially diagnosed, they need to radiate both lungs fully to ensure that they are clear.) Finally, after all of the radiation is done, Justin will then have an MRI, CT and bone scan to be sure that all of the cancer is indeed gone.
So, roughly 11 months after Justin was diagnosed we should be finished with treatment. Of course, he will be monitored very closely over the next 5 years with scans every 3 months or so to be sure that there is no relapse. What a whirlwind it has been. From day one, when we thought we would never make it this far, to now - the end of treatment, we have been through every emotion. I am so thankful to all of the people who have supported us on this journey. We have been blessed with an amazing family, wonderful friends and we cannot say enough about our medical team.
This past year has been a learning experience and a time of growth for us, both personally and as a family. Though I can't speak of how it has shaped each member of our household personally, I can say that it has tested me beyond my limits. I have always had the need to be in control of my own life and environment, and in this case I was helpless to do anything for my son. I was forced to relinquish control and trust the medical professionals and God to get us through this. I discovered that strength can be found, even when you are at your weakest. I also learned that true friends stick by you, even when you withdraw into your own fragile shell and aren't much of a friend in return; and that new friends appear out of nowhere when you didn't know they existed.
We will soon be booking plane tickets, villas, hotels and tours for Justin's dream trip to Italy. The hope is that we will leave late August or early September. It is surreal to think that we will actually be visiting this place steeped in rich history and architecture and that Justin, a 13 year old boy, chose this place as his dream. It just proves the point that I have made several times throughout this journey, that Justin is a very special young man who is wise beyond his years and I could not be more proud of him.
Leaving CK5 for the final time brought a mixture of emotions for me. While I was thrilled that this was the last time we would be admitted for chemotherapy, saying goodbye to the nurses and support staff was hard. Through tears, I gave many hugs and vowed we would come back but ONLY FOR VISITS! We appreciate all of them for the kindness, compassion and support they have extended to us over the past ten months. We formed relationships and had special connections with them. One of the nurses even switched her shift so that she could be there for Justin's last chemo.
I had this idea in my head that once chemo was finished, things would finally settle down and there would be less running around to appointments and such. It seems I was wrong; for the time being anyway. This month will be a busy one. We will be at Radiation Therapy today to have a simulation CT done to get Justin lined up for his next round of radiation. We will have an Echo Cardiogram and EKG done later in the week, along with a clinic appointment at Cancer Care. Next week, we have another clinic appointment and we see the surgeon for a pre-op so Justin can have his central line removed on the 21st. Radiation will begin around that time as well, which will be daily for 10-15 days from what I understand. (Since he had several spots on his lungs when he was initially diagnosed, they need to radiate both lungs fully to ensure that they are clear.) Finally, after all of the radiation is done, Justin will then have an MRI, CT and bone scan to be sure that all of the cancer is indeed gone.
So, roughly 11 months after Justin was diagnosed we should be finished with treatment. Of course, he will be monitored very closely over the next 5 years with scans every 3 months or so to be sure that there is no relapse. What a whirlwind it has been. From day one, when we thought we would never make it this far, to now - the end of treatment, we have been through every emotion. I am so thankful to all of the people who have supported us on this journey. We have been blessed with an amazing family, wonderful friends and we cannot say enough about our medical team.
This past year has been a learning experience and a time of growth for us, both personally and as a family. Though I can't speak of how it has shaped each member of our household personally, I can say that it has tested me beyond my limits. I have always had the need to be in control of my own life and environment, and in this case I was helpless to do anything for my son. I was forced to relinquish control and trust the medical professionals and God to get us through this. I discovered that strength can be found, even when you are at your weakest. I also learned that true friends stick by you, even when you withdraw into your own fragile shell and aren't much of a friend in return; and that new friends appear out of nowhere when you didn't know they existed.
We will soon be booking plane tickets, villas, hotels and tours for Justin's dream trip to Italy. The hope is that we will leave late August or early September. It is surreal to think that we will actually be visiting this place steeped in rich history and architecture and that Justin, a 13 year old boy, chose this place as his dream. It just proves the point that I have made several times throughout this journey, that Justin is a very special young man who is wise beyond his years and I could not be more proud of him.
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