I'm His Mom...

The moment your son says to you, "Mom, can you tell that I'm bald when I have my hat on?"... it's like something grabs hold of your heart and squeezes; you try to catch your breath.  Your defenses go up because you know there is a reason he is asking.  You pray that no one has said anything to hurt him.  I'm his Mom.  Let me back up a bit...

The other night, Justin went to another Jets game.  He and Trevor had been given seats right behind the opposing team's net, so for one period of the game Pavelec would be in that net.  We sat at the kitchen table for a couple of hours the night before, working on a poster that would hopefully get Pavelec's attention.  Justin's wanted to let Ondrej know how much he appreciated all he has done for him.  We cut out letters with my fancy scrapbooking machine, that has not seen any scrapbooking since I bought it by the way, but what better use for it!  We printed a picture of Justin and Pav, the Jet's logo and a picture of Pavelec's jersey and stuck them all on a huge piece of neon orange poster board.  Our work was not in vain, as Ondrej did see the sign (and Justin) and gave him a wave, a wink and a smile.  It was a bright spot for Justin in a game that unfortunately didn't turn out in our favour.  At one point, Trevor and Justin went out to grab a hot dog.  While they were apparently standing in the wrong line by mistake, Justin told me he heard a guy behind them complaining to his buddy about it.  His buddy hushed him and said, "The kid has cancer."  Justin said he turned around and didn't know who the guy was.  He was a complete stranger.  So, there it was.  The first time a complete stranger acknowledged the fact out loud.  Sure, people stare and you know they are wondering, but this was the first time he had actually heard it being said.  And that is what prompted the question.

He has been talking about his hair quite a bit lately...how he misses it.  He told me that his hair defined who he was.  It was his identity.  I told him that it was his personality that defined him, but then I thought about all of the times that I have identified him by his hair:  "Justin is the one with the thicker hair."   "Justin's hair grows so much faster than Ryan's."  "Justin's hair has a bit of curl to it when it gets longer." I remember when he used to wake up and walk out of his room with bed-head; a mop top of blonde locks.  I can still see it in my mind's eye.  It was a huge part of who he was.  And he is mourning the loss of it.  And to add insult to injury, it's not just the hair on his head that is gone.  He has so few eyebrows and eyelashes left that you could literally count them.  To tell him that it will grow back somehow seems paltry.  Being thirteen years old has it's challenges, to be sure.  Hormones are kicking in.  The opposite sex becomes more interesting.  It is a time of huge changes and insecurities.  Imagine going through it with no hair.  My heart aches thinking about what he silently deals with on his own.  I'm his Mom.  I would give anything to take it all from him.  All of his fears, all of  his worries. But I can't. 

To date, he has gone through 7 rounds of chemo. One bit of good news we got the last time he was admitted for chemo is that from this point on, his chemo only runs for two days instead of three.  We go in on a Friday and come home on Sunday.  After the next one, they may be adding radiation of the tumour site into the treatment plan.  In the protocol, it states that radiation be given between rounds 8 and 12, so anytime after the next round.  This brings more unknowns into the mix.  We don't know how he will react to the radiation.  We've been told that radiation close to the stomach can make you nauseous, but that Justin's tumour was far enough away that it hopefully won't affect him in that way.  We've also heard that radiation tires you out more than chemo.  I guess we'll just have to wait and see. 

It always goes back to taking things day by day.  That's the best advice I have been given and the best advice that I can give to anyone else going through this.  Oh, don't fool yourself into thinking it's easy to do.  Sometimes it's painfully difficult.  You rejoice in the moment when you hear encouraging results from the doctors and in the next moment, you see another child who isn't doing as well and you wonder.  Your mind always skips ahead to the unknown.  The 'what ifs'.  It's emotionally and physically exhausting trying to stay positive all of the time, but we have to try because that unknown, that darkness, creeps into your head and can send you spiralling into a pit of despair.  And when it happens (because it does), you have your cry and pull yourself out.  You put on your positive face and move forward because that's what Justin needs.  I'm his Mom.  There is no other option.

 

                                      Justin holding his poster up at the glass behind Pavelec.

 

 

Halfway There...If I Only Knew Where "There" Is

One week from the day of his surgery, Justin came home on Friday, November 8th.  And wouldn't you know it, as we were standing in the hospital room awaiting the discharge orders Trevor got a text from Pavelec offering Justin tickets to the game that night!  Justin was disappointed to have to decline, but was assured that there would be other tickets available when he was feeling better.  Once we got the orders and prescription, we made our way home sweet home.

As we were driving into La Salle, we were greeted by orange ribbons lining the road - in the trees and on the bridge.  What a wonderful homecoming!  To think that someone went to all that trouble to show their support and let us know they were thinking of us brought a tear to my eye.  A testimony to the wonderful community that we call home. 

Justin seemed to progress so much faster once we were home.  We watched the Jets game on Friday night and Justin was thrilled that they got the win and that Pav got the shutout!  It's just too bad he wasn't able to be there to see it in person.  Saturday was pretty relaxed and Sunday morning Justin said he wanted to go to church.  We went and about half an hour in, Justin said he wanted to go home.  He just wasn't comfortable sitting on such an uncomfortable bench, despite taking a pillow along.  Later in the day, we went to Ryan's hockey game and he lasted two periods before I had to bring him home.  I was so happy that he wanted to get out and about so soon after getting out of the hospital.  He had such pain in his knees whenever he got up to walk in the hospital, that he dreaded getting out of bed. 

Tuesday morning we went to Cancer Care for central line care and then Justin went to school.  He was so looking forward to being with his buddies again.  We had discussed just playing it by ear; only doing what he felt he could handle.  He ended up calling me at about 2:30 to come and pick him up.  He was tired and a little sore but, happy that he had been able to socialize again.  Today he lasted the whole day at school!

Friday, he is scheduled to start chemo again.  It's amazing that his young body can handle so much in such a short span of time.  Just two weeks after major surgery, he will presumably be well enough to undergo chemo.  This will be round seven.  He will be getting a new drug with this phase.  Hopefully, he will tolerate it well and not suffer worse nausea than previous rounds.  He will have a total of 14 rounds of chemo and between 8 and 12, he will have radiation on the tumour site.  The radiation will be Monday to Friday for about five weeks.  And I thought I was running a lot now!

So, with round seven around the corner we are nearing the halfway point in this journey.  It's hard to believe that it has been nearly five months since we boarded this roller coaster.  By next summer, Justin should be done with all of his treatments and radiation.  Do I dare to think that this will one day be over?  Is cancer ever really over?  Doesn't it always live in the back of your mind once it has invaded the life of someone you love?  There are so many unknowns and uncertainties at the end of all this.  A person could go crazy thinking about it.  It could eat you alive.  We just have to enjoy each new day as it comes and have faith that God will take care of the rest.

One Step Closer to Home

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!

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.