Moving On

Well, after a more than a year of planning and waiting, Justin finally had his Dream Factory trip to Italy.  We left Winnipeg on the morning of Friday, August 22, and after three flights, a six hour layover in Montreal and an 'interesting' drive in our rental van (blindly following the GPS directions on crazy roads), we arrived at our Tuscan villa in the early evening of Saturday the 23rd.  When we pulled onto the property, our collective jaws dropped.  The stunning villa was set among the hills and valleys of the Tuscan countryside and was truly breathtaking.  It was just as we had dreamed it would be; even better.  The first thing Justin did was run through the house and choose his bedroom; the one with the best view!  It definitely delivered.


Much of our first week in Italy was spent relaxing in the villa, enjoying the pool, outdoor pizza oven and courtyard, and wandering around the property taking in the amazing views.  We also took a few day-trips from our home base in Tuscany.  We visited the amazing city of Venice, the leaning tower of  Pisa and several of the medieval towns around the area such as Siena, Lucca, San Gimignano and Monteriggioni.  We were all in awe of the architecture, history, landscape and charm of all of these centuries-old settlements. We were also treated to a tour and wine tasting at a local winery by our property manager, Barbara, who knows the vintner. Barbara also introduced us to Richard Fremantle; author, Renaissance expert and art historian, who treated us to a private slide show and lesson on the Renaissance and the history of Tuscany.  What a special treat!  Richard even met us in Siena and gave us some history of the city and pointed out some things of interest that we should see.  Both Barbara and Richard made our stay so much richer and we are blessed to have made some lasting friends in Italy.

From Tuscany, we went on to Rome for four nights.  Our time in Rome was busy; walking miles and miles every day while visiting the well-known tourist destinations such as the Coliseum, Roman Forum and Palatine Hill, the Pantheon, Spanish Steps and Vatican City with St. Peter's Basilica in all it's glory.  We also stumbled upon some other incredible, lesser-known (at least to us, anyway) attractions such as Castel Sant Angelo and the Capuchin Crypts, both of which were definitely worth a visit.

With Rome behind us, we headed to the Sorrento Coast for 3 nights.  I had rented a little apartment in the outskirts of Sorrento which was meters from the Mediterranean Sea.  The views, again, were breathtaking.  The white, towering cliffs, azure waters and the sight of mighty Mount Vesuvius across the bay captivated us.  It felt like paradise found; a retreat after the hustle and bustle of Rome.  We spent one day touring around the Island of Capri in our rented motor boat where all three boys snorkeled in grottos and Ryan and Brennan jumped off 50-60 foot cliffs into the crystal clear waters.  We also had the meal of a lifetime in a restaurant right on the coast.  The boys were blown away with the service and the food, having never been to such a "fancy" restaurant! We also took a drive to Pompeii to see the ruins of the ill-fated city that was buried under 6 storeys of ash when Vesuvius erupted in 79 AD.

The final leg of our trip led us to Florence, where we spent our last 3 nights.  We had a lovely apartment that was close to the historical city centre so we walked everywhere.  We did a lot of sight-seeing taking in the famous Duomo, the Ponte Vecchio and of course the statue of David.  We also did a lot of shopping in Florence.  I have to say I loved the abundance of leather shops!

Seventeen days later, we were on our way home.  We arrived back in Winnipeg on Tuesday, September 9th. We are exhausted but filled with wonderful memories that will last a lifetime.  Justin and I have planned to dedicate one wall in the basement to our Italy trip.  We will frame pictures in various sizes and make the wall a collage to enjoy for years to come.

While it is good to be home, a few of us are suffering from jet lag and have come down with colds as a welcome home gift.  However, we must move onward with living life as usual again. The twins are back at school (having missed the first 5 days) and they love high school!  Justin has signed up for 'Acting for the Camera' classes at Manitoba Theatre for Young People and is excited to start on October 2nd.  He dreams of being an actor in Hollywood someday, so this should help him get his feet wet and see if he really likes it.

Justin had his first '3-month' MRI and chest x-ray on Friday.  Every time the wait for results is nerve-wracking. We received a call from his oncologist late on Friday night telling us that, although he didn't have the radiologist's report yet, he had seen the scans and he thought everything looked good!  Thank the Lord!  Justin looks great and feels great (except for the cold right now) and is moving on with life.  He is looking forward to the Jets' season and has been given tickets to two games, the first one being the home opener, so he is pumped! 

I imagine that I won't be posting as often, seeing as Justin is doing so well.  I pray that it remains that way and that I will never have to chronicle a journey such as this again.  I will, however, update every three months as Justin has his MRIs and chest x-rays because I know that all of you following his journey would love to hear that he is continuing to do well.

I would like to thank all of you who have followed Justin's Journey and have prayed for him or kept him in your thoughts, sent good vibes; whatever it is you do, it is all appreciated!  As his mother, it is humbling to see the vast number of people who have joined forces with us to help us fight the fight and celebrate with us as we are VICTORIOUS over this disease; at least until the next scan.

Until then,
Trish ♥

Moving Forward

It has been a while since I last posted.  Life has slowed down around here significantly.  Funny how quickly your life can change.  A little over a year ago it suddenly got filled with appointments, tests, hospital admissions, treatments, etc. and that soon became the new "norm".  One year later, it all seems like a bad dream.  Gone are the twice-a-week Cancer Care appointments.  They have been replaced with once-a-month wellness checks and IV antibiotics.  (Due to the chemotherapy, Justin's immune system is still vulnerable for 6 months post-treatment, so he will need have the antibiotics to protect his lungs from pneumonia and other infections.)  No longer are we being admitted to CK5 for chemotherapy treatments.  Now, we go up only to visit our extended family of other cancer patients who are still in treatment and the wonderful nursing staff that we spent so much time with.  On these visits when I look at the patient board behind the nursing desk, I see so many new names that I don't recognize.  It is a grim reminder that while that life is now a thing of the past for us, it is just the beginning for so many others.

Grade 8 Farewell has come and gone.  Justin was adamant that he wanted to get up in front of everyone and express his gratitude for all of the support that he has received from his teachers and classmates over the past year.  He spoke eloquently from the heart and moved many people to tears.  A proud mother moment, for sure.  Since then, we have been out to our campsite at West Hawk Lake as often as possible.  Justin has been making up for lost time on the tube and in the water and is loving every minute of it!  This summer is about being a teenage boy, hanging out with his brothers and friends, doing the things that teenage boys love to do. 

A month from now we will be on our way to Italy for Justin's dream trip.  We have been busy deciding what we want to see and do, pre-buying tickets to some of the main attractions so we don't have to wait in line, renting our van and brushing up on some Italian phrases and travel tips to ensure we have the best trip possible.  It will definitely be the trip of a lifetime!

Moving forward, Justin will continue to have MRIs, chest x-rays and blood work every three months for the next 5 years to make sure that there is no relapse.  Justin is angry that he has to be monitored so closely.  I guess he just wants that part of his life to be over and every three months he has these scans to remind him of what he has been through.  I have heard the term 'scanxiety' often from other pediatric cancer moms that I have met.  It describes the feeling that we, as parents (and I suppose teenage patients, as well), get leading up to scan appointments.  It is in this moment that everything hangs in the balance.  As we wait for results, we imagine the worst and hope for the best.  They will continue to monitor Justin for 5 years.  Will I magically stop worrying about Justin after that 5-year mark?  I think not. I once read, "Being diagnosed with pediatric cancer is not a death sentence, it is a life sentence."  This is so true.  The chemotherapy drugs that they use to kill the cancer cells in these young bodies can pose a host of problems for these children in the future.  Every cough, fever, complaint of muscle pain or change in appetite throws up a red flag for me.  I can't imagine a time when it won't.  Justin, of course, sees me as the over-protective, panicky mother who blows everything out of proportion.  I suppose that is now my lot in life.  Going through something like this changes who you are as a person.  How can it not?  Even though I try to have faith that Justin is healed, doubts creep in.  I suppose it's human nature.  We are not in control of this.  I just have to try to, "Let go and let God".

Justin and twin bro, Ryan, on Farewell day

Giving his speech

Tubing with big bro, Brennan

 

 

 

bi

He Is VICTORIOUS!

As of Monday, June 2, 2014, Justin is officially finished his cancer treatment!  In the past weeks, we have had more phenomenal news - Justin's MRI and CT results also showed that he is clear.  They can see no evidence of disease in his body.  Hallelujah!  Justin has also completed his ten sessions of radiation therapy, which covered both of his lungs in their entirety.  This has left him very tired, short of breath and with a nasty cough. We are told that this is to be expected, given the large area that the radiation covered and the fact that it was directed entirely on his lungs.  Justin also had his central line removed on May 21st.  This was HUGE for him, as he was unable to shower or swim while it was in.  48 hours after it was removed, he showered for the first time in 11 months!

Since he is completely done, we decided what better time to set the plans for Justin's dream trip to Italy in concrete.  We met with Grace from The Dream Factory on May 29th to discuss where Justin wanted to stay and what he wanted to see and do.  Ever since he found out that he was eligible for a wish, Justin has dreamed of staying in a villa in Tuscany.  Grace wasted no time and informed us within days that our flights and the villa of Justin's choice are now booked.  We will stay in the villa from August 23-30th and to extend our trip, I have booked apartments in Rome, Florence and the Sorrento coast from August 30-September 9th.  We are getting so excited now that things are booked and it is really happening!

Life is slowly getting back to normal around here.  Little by little, Justin is regaining some of his strength and energy.  It could take a few weeks for the effects of the radiation to fully wear off, though.  Last week, he went to camp with his classmates for the traditional Grade 8 farewell celebration.  They left on Wednesday and were to come back on Friday.  Justin was reluctant to go as he was feeling really tired and he was concerned he wouldn't be able to participate in any of the activities.  I encouraged him to go, telling him that I would come and get him if he felt like coming home early.  He did end up calling me on Wednesday night before bed asking me to come and get him on Thursday, but at least he spent one night with his peers having some fun and he went swimming!  His classmates even insisted that Justin be the first one to jump in the pool.  What a special group of kids.

As I sit here on my couch typing this, my eyes are drawn to the calendar on the kitchen cabinet.  In two weeks and two days, the twins will be attending their Grade 8 Farewell.  They will be done at La Salle school and will be headed to high school in the fall.  On June 16th, it will mark the one year anniversary of Justin's hospital admission which led to his cancer diagnosis.  It's hard to believe that is has been nearly a year.  So much has happened.  So many ups and downs.  It's surreal.  It seems like a lifetime ago; almost like a dream.  But I only have to see Justin with his bald head to know that it was not a dream. The hair is starting to come back though; a halo of white fuzz, seen only in certain light, covers his head.  His eyebrows are coming in darker than his hair and to his delight, he has quite the mustache coming in as well.   Each of these new milestones is a reminder that my son had cancer but he fought through it with blood, sweat and tears and came out VICTORIOUS. 

He Won't Let Go

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

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.

The Final Countdown

Last week Justin completed chemo # 13.  Physically, it was neither easier nor harder than previous treatments but it was different.  Justin had a room mate for the first time.  Though he was a nice enough boy about Justin's age, it wasn't ideal.  Going through chemotherapy is not something easily shared with strangers.  It is such a personal, private experience.  It strips you bare, leaving you vulnerable and exposed.  You are literally at your worst and having to endure this while in the company of strangers seems wrong.  Shortly after his chemo was started, Justin curled up in his blankets and told me he just wanted to sleep through the whole thing.  My heart ached for him because normally we have 'moments' during his treatments where he opens up to me, spilling all of his emotions about the whole miserable process that is chemotherapy.  He rages and rails against it, wishing it to be over so he can just be back at home.  It is raw and it is real.  It's sort of therapeutic, in a way. Instead, he lay there silently.  With a stranger in the room, perhaps he felt he had to keep it all inside for fear of judgement.  We have been so fortunate that up until now, we had never had to share a room.  I hope and pray that we will have a private room for his last chemo. 

It is the final countdown!  We are exactly two weeks away from the scheduled start date of Justin's 14th and final chemotherapy treatment on April 29th.  He will also have radiation again, within the next few weeks after chemo, to both lungs to be sure whatever was once there is gone.  When we first heard the words, "Your son has cancer", I couldn't imagine ever getting to this place in time.  Time seemed to stand still and the end seemed so far away.  Well, now it's here and with this end comes a new beginning.  The beginning of a new life for Justin.  He will now be a cancer survivor because he believes that he has beat this.  We believe he has beat this.  He has been such an inspiration to me throughout this whole journey.  Who would have thought that I could learn so much from my own child?  He has taught me to have faith, which is something I have often struggled with.  He has taught me to be strong when I would have liked to curl up into a little ball and disappear.  He has taught me that he can endure so much more than we, even he, thought he was capable of.  He was just saying the other day that he is weak; a wuss - has been most of his life.  I was incredulous!  I reminded him that anyone who has been through what he has for the past ten months is anything but a wuss!  He has matured and evolved into a strong, brave, confident young man who has refused to let this stand in his way.  He has plans for the future and is taking steps to make those dreams come true.  I cannot even express how proud I am of him and how much my heart is bursting with love for him.  One thing this experience has taught me is that no matter what you believe you know about your children, they will surprise you.  I look forward to many more surprises from Justin in the years to come.

Viva Las Vegas!

Thankfully, Justin was able to have chemo #12 as scheduled on March 18th and as a result, we were off to Las Vegas for a much needed break on March 26th.  We all had a wonderful time and soaked up as much sun and warm weather that we could in the five days we were there, hoping to store up enough to last until spring comes to Manitoba! 

Our family watches a lot of the reality shows that are set in Vegas; such as Pawn Stars, American Restoration and Counting Cars, to name a few.  Trevor had previously emailed these establishments explaining Justin's situation and asking if it would be possible to meet some of the stars.  Fortunately, Pawn Stars got back to him and were willing to set up a behind the scenes tour and a quick meet and greet with some of the guys.  The twins didn't know that this was planned, so it would be a great surprise for them!  The day before our trip, their PR person called and said that we should come straight from the airport on Wednesday if possible. 

We landed in Las Vegas around 11 am, went to the hotel to drop off our bags and then we were off to Gold and Silver Pawn.  On our way there, we explained to the boys that we wouldn't have to wait in line and would get to meet some of the guys.  They were so excited! 

We were greeted at the door by Laura (the PR person) who introduced us to Head of Security and our tour guide, Andy.  What an awesome guy!  He allowed the boys to wear a $100,000 Super Bowl ring and we were taken into the back warehouse and the fenced-in parking lot where the Harrisons and Chumlee park their personal cars.  As we were walking through the warehouse, Rick walked by and stopped to say hello and pose for a picture with us.  How cool was that!  Cory and Chumlee were also kind enough to stop for a picture and a quick hello.  We were also shown the "Old Man's" office and the boys were allowed to sit in his chair.  Unfortunately, Richard Sr. was already gone for the day so we weren't able to meet him. 

One of our favourite things to do was walk The Strip; people watching and taking in all of the grandeur of the hotels and casinos.  We walked for miles and miles every day marvelling at the extravagance of it all.  We also toured Hoover Dam, took in a Cirque du Soleil show and visited Madame Tussaud's Wax Museum.  One day, Trevor and the boys rode the roller coaster at New York New York over and over again while I wandered the shops.  The twins were constantly smiling and in awe of it all.  It warmed my heart to see the boys so happy and enjoying life in this fantasy land.  It truly was the perfect break in the routine of cancer treatments and the monotony of this long, frigid winter.  Now summer won't seem so far away and Italy will be right around the corner.

Chemo #13 is scheduled for next Tuesday, April 8th.  Justin's second last treatment.  The end is so close now I can see it!  I can feel the excitement building inside me; looking forward to a summer with no chemo treatments, no central line care to worry about, no more shots to boost neutrophils.  I am cautiously optimistic that this is it; the end of living with cancer in our house.  That all of these chemo treatments have done their intended job and destroyed every single cancer cell in Justin's body.  That he will live a long, healthy life with no short or long-term effects from the chemo.  I, and many others, have been praying for these very things for the last nine months.  It has to be so.

                                                            The $100,000 Super Bowl ring

                                                                Rick Harrison - Pawn Stars

                                                                   Chumlee - Pawn Stars

                                                                      Corey - Pawn Stars