Thursday 19 December 2013

We'll Be Home for Christmas

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.


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.

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.








Saturday 23 November 2013

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.
 

 






Wednesday 13 November 2013

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.

Tuesday 5 November 2013

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!

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.

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.



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.

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.

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.

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.




Mr. Ryan (Ryan's Taekwondo) congratulating Justin on his promotion

Mr. J (Justin's instructor) and Justin

 

Monday 16 September 2013

A Dream Come True

It's been a while since I've written.  Things have been going so well.  Things have also been busy and exciting.  We have been blessed once again by the generosity of people. 

A couple of weekends ago, we were sitting around the campfire at the lake playing a game that we sometimes play.  We take turns asking a question which everyone else around the fire has to answer.  Questions like:  If you could go anywhere in the world, where would you go?  What's your biggest fear?  What's your favourite car?  Stuff like that.  Trevor asked, "If you could meet anyone in the world, who would it be?"  Justin didn't even have to think about it.  He answered, "Ondrej Pavelec."  Little did he know it would happen just days later.  In the business he's in, Trevor meets a lot of people.  And as they say, it's all about who you know.

Rob and Carla run the Winnipeg Pet Rescue Shelter.  It is a no-kill shelter.  That in itself shows the hearts of these people.  They have known Trevor for years and we have been to a couple of fundraising galas for their shelter. They also know some of the Jets players and have had a couple of them at their business signing autographs in the past.  Trevor decided to make a phone call and ask for a favour.  They had heard about Justin's diagnosis and were thrilled and eager to make Justin's dream come true.  It was set up rather quickly and we got a call saying that Justin would meet Pavelec the very next week.  Justin, of course, knew nothing about it.  It was so exciting knowing that we were going to surprise him with this.  He would be over the moon!  

On Thursday of last week, I went to the school at lunch time to pick up the twins.  They, of course, asked where we were going.  I told them we were meeting Dad somewhere and nothing else.  When we got to the clover leaf at the perimeter and Portage Avenue, Justin asked if we were going to the Ice Plex.  I asked, "Why would we be going there?"  He told me that the Jets were in training camp.  I replied, "Well, I don't know anything about that." ;) With wonder and excitement building,  we pulled into the parking lot of the MTS Ice Plex.  Disappointment clouded his voice as Justin said, "If I knew we were coming here, I would have brought my jersey!"  I then replied,  "Well then, I guess it's a good thing I brought it!"  We were unsure exactly how this was going to go.  We didn't know if we would all be allowed to meet him or if he would sign anything, but I brought sharpies, Justin's Pavelec jersey and hat, and Ryan's Jets hat just in case. 

Trevor, Rob and Carla met us at the door.  After the boys were introduced to them, Carla asked Justin if he knew what was happening here today.  He said he wasn't really sure, but hoped he could see the Jets practicing.  She grabbed Justin by both hands and explained that they had arranged for him to meet with Ondrej Pavelec after he was done his work out.  With tears in my eyes, I listened to her tell him that they heard about what he was going through and that they wanted to do something really special for him and were glad to have been able to arrange it.  We were soon ushered back to a more private place and awaited Ondrej's arrival.   When he walked toward us, Justin's face lit up.  With a big smile, he walked right up to Ondrej, stuck out his hand and introduced himself. After all of the other introductions were made, he graciously signed both Justin's jersey and hat and also Ryan's hat. We then all gathered around a table and visited with Ondrej.  Though he spoke with all of us, his clear focus was Justin.  What a sight to sit back and watch.  The two of them, sitting head-to-head, chatting like old friends.  Justin had only been to one Jets game and during the warm up, he shot video of Ondrej on his iPod.  He pulled it out and showed Ondrej the video.  Ondrej watched it with a smile on his face, making comments to Justin occasionally as he watched.  I brought one of Justin's bracelets with me, thinking Justin might want to give it to him. When Justin handed it to him and asked if he would wear it, he replied, "Definitely!" and immediately put it on.  At one point Ondrej asked us if we get out to many games.  We told him that we have gone to a few, but never as a family as tickets are hard to come by.  He sat there thoughtfully for a few moments and asked, "Would you come (to Sunday's game) if I get the tickets?"  We were all dumbstruck!  Justin managed a, "Uh, yeah, I would go!"  We all chuckled and said we would definitely work it into our schedule. 

With the arrangements made for the game, it was time to say goodbye.  As he was leaving, he said to Justin, "You're going to wear the jersey and the hat to the game?"  Of course Justin's response was a resounding yes, at which Ondrej smiled and replied, "Good!"  After Ondrej left, a Winnipeg Sun reporter came over and asked if he could ask us some questions.  Once the interview was done, he told us that there would probably be something in the Sun on Friday.  Imagine our surprise when we saw the Sun the next day!  On the front page was a picture of Justin sitting with Pavelec and the headline TRUE HERO.  Inside was a full page story and another large picture.  Suddenly we have a celebrity in our midst!

Last night we went to the game.  Pavelec not only provided 5 tickets to the game but he also gave us passes to join him down by the dressing room after the game.  Unfortunately, they lost but we were very excited when the game was over so we could head down to meet with him again.  We had a wonderful time.  It was so casual, and though I want to say comfortable, there were still nerves visible on both sides.  It was surprising and endearing to see that Ondrej Pavelec, NHL goalie, seemed nervous to be talking with us! We asked him some questions, he asked us some questions and we had some pictures taken with him and the whole family.  It was also very sweet to see that he was wearing Justin's bracelet. 

We are truly blessed.  This may sound strange coming from someone whose son has been stricken with cancer.  We are only two and a half months into this and so much has happened.  We have been at our lowest of lows and highest of highs.  With an initial prognosis that did not sound promising, Justin's cancer has been responding to the chemotherapy phenomenally.  Justin has had some opportunities that he probably wouldn't have had if he had never been diagnosed with cancer.  It touches my heart so much that people want to give whatever they can to bring Justin joy.  And the fact that an NHL goalie went above and beyond to spend quality time with us not once, but twice, means more to us than he'll ever know. So, thank you, Ondrej Pavelec, for giving this mom the opportunity to see her son's dream come true.  You are one classy man.

Watching the video on Justin's iPod


Front page of the Winnipeg Sun - Friday, September 13, 2013
(Notice the blue bracelet on Pavelec's right wrist)
 
After the game on Sunday, September 15, 2013


Monday 2 September 2013

Changes

Round 4 of chemotherapy is complete and Justin came through it virtually unscathed!  He had no nausea to speak of this time around.  It was amazing!  With school starting in three days, it looks like he will be there for the first day with no ill effects. I met with Justin's teacher a couple of weeks ago to discuss his school year and it will look quite different.  I explained to her that he will be missing quite a bit of school.  She was wonderful and very understanding and accommodating to Justin's situation.  She said that he need not worry about any deadlines or falling behind; his main concern should be his health.  Since she taught Justin last year, she knows his work habits and writing skills. She said she wants to focus mainly on math with him because he will need those concepts in Grade 9 next year.  This took any stress and worry off of Justin's shoulders and he is now looking forward to going back.

This time last year, I was gearing up for my first day back at work after having the summer off.  This year it looks a little different for me as well.  I have decided to take a year-long leave of absence due to Justin's diagnosis.  With his schedule of chemotherapy, possible surgeries, radiation and Cancer Care appointments it just doesn't seem feasible for me to work full time.  After seven years back in the workforce, I am once again a stay-at-home mom.  I can't think of anything more important for me to be doing this year.  I'm a little worried that I may become bored when Justin is well and attending school as normal, but I need to be here if he is feeling too nauseous to go to school or in the event that he becomes ill.  The chemo knocks out his defences when it kills his healthy blood cells along with the cancer cells.  Thus, he is vulnerable to infection.  There will be times when he is unable to go to school just based on that alone.  It's all about his 'counts'. 

So, this is a year of changes.  They say change is good.  I'm not sure I would call any of this good, but it is what it is and we do what we have to do.  And I have to, no - want to be here for my family. ♥

Monday 26 August 2013

Reflections

As I sit here in the quiet solitude of a Monday morning at our campsite, with summer drawing to a close, I reflect upon the summer that should have been and the summer that was.  Being an EA (educational assistant) and having the summer off, the plan was for the twins and I to spend the entire summer at our seasonal campsite at West Hawk Lake.  That plan changed and became spending whatever time we could at the lake between Justin's treatments, when he was feeling up to it.  It's hard to believe that Justin is going in for his 4th chemotherapy treatment on Friday.  It's hard to believe that the kids will be going back to school next week.

Summer goes by so fast at the best of times.  When you're out having fun with your family and friends; living the easy, laid-back life it seems to fly by in the blink of an eye.  It seems it also flies by amid chemotherapy treatments,  CT scans, blood transfusions, hospital stays and Cancer Care appointments.  I sometimes wonder how my life became this...that one pivotal moment in time derailed my course and spun me off into a new direction that I never, ever, thought I would be going in.  I imagine seeing my life as a road map in God's hand.  He was looking at it and saying, "Hang on, Trish, it's going to get bumpy here just around this bend."

I've never seen myself as a particularly strong person.  It's surprising what you can find within yourself when forced to.  Two months ago, I didn't know I had it; didn't even know where to find it.  Getting that kind of news can crush you.  Its almost suffocating.  But then you pick yourself up because you have to.  Justin needed me.  All of the fear and anguish I was feeling, he was feeling.  So I had to dig deep and find that inner strength to be brave for Justin.  It was my job to support and encourage him, so I did.  I do.  Over time, after the initial shock wears off, life goes on.  Sure, it's not the life we had planned but it's life just the same.

Life.  And where there is life, there is hope.  Hope of a bright future for all of us.  And the future begins now.

Thursday 15 August 2013

And We Will Roar!

I just got off the phone with a friend from work.  It had been a long time since we connected.  In  early June, she had to take a medical leave from work to have surgery for Crohn's Disease.  A couple of weeks after that, we began our journey with Justin's diagnosis. 

 It's almost like we have been living parallel lives in some ways.  She, coming to terms with the fact that she now has an ileostomy bag and the changes that brings to her life; and we, dealing with the fact that our child has cancer and how that effects our family.  How quickly we become wrapped up in our own worlds when something like this touches our lives. We all deal with things differently, but in talking with my friend, I realize that there are also many similarities in our situations.  We spoke of sort of keeping to ourselves.  Not reaching out to people for whatever reason; whether it be shame, fear or just sheer exhaustion and not wanting to talk to anyone.  We needed time to just get our heads around what our lives have become. We dwell in our own pain, sure that no one would ever really understand what we are going through.  But the truth is, there are people who understand.  It might not look exactly the same but the emotional and physical pain that one feels going through Crohn's or dealing with a loved one's cancer are kindred, and in talking we found a common bond.  We have both found some sort of acceptance of what we have been dealt.  We will go through all of this because we have no choice.  We will be strong and victorious.  And when it's all said and done, we will roar!

 It's certainly not what we would have chosen for our lives.  We wouldn't wish it upon anyone.  But it is what has been handed to us and we will make it through this.   One step at a time.  And by God's grace, come out stronger for having been through it.  Thanks for the talk, my friend.  Let the roaring begin! ♥

Friday 9 August 2013

The Power of Prayer

We got the best possible news today at Justin's pre-chemo appointment.  The radiologist's report from yesterday's CT scan showed that the tumour has shrunk about 70% and it has shrunk away from his spinal column!  Also, Justin had several nodules present in both lungs on his last scan and they are now GONE!!!  The doctor showed us the pictures of the scan and it is amazing.  On the first one, you could barely see his left lung because the tumour was pushing so far into the lung cavity and now the tumour is just a small spot at the bottom of the picture.  The doctor said that after only 2 courses of chemotherapy that this is exceptional.  I have to confess that I haven't always believed in the power of prayer.  I have prayed for many things over the years with no apparent answer.  Maybe the things I have been asking for haven't been big enough; important enough.  Or maybe God did answer them, but it just wasn't the answer I wanted.  With this news, I can't see any other way around it.  I am convinced that this is a direct answer to prayer.  There have been so many people praying for this result.  Matthew 18:19 says, "Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven."  There have definitely been enough people asking God for this.  I am so thankful that I have this hope and now this increased faith.  How horrible it must be for people to go through this kind of thing with nothing to hold onto.  I can't even imagine.  I have felt despair and fear throughout this journey, but I cried out to God to help us through this and heal my son.  He has heard this prayer over and over again from many, many people and He is listening.  He is responding.  He is good.

Thursday 8 August 2013

Birthday Blessings

Today is the twins' birthday.  Thirteen years old!  What better way to spend your 13th birthday than getting a CT scan, right?  It was all fine and good until we got there and realized they had to put in an IV to inject the contrast medium.  We assumed they would put it in the central line, but no.  Justin was NOT happy!  Anyway, the scan was performed and we were on our way out to our favourite little hot dog cart outside of Cancer Care.  We have gotten to know Kevin, the Champion Dog owner, quite well over the past month and a half.  A very sweet man who knows our names, what we usually order and our story.  When he found out it was the twins' birthday today, he insisted that lunch was on him.

 Next stop was Sweet Impressions to pick up the birthday cake.  Once back in La Salle, I went to Jeni's (our local grocery/hardware store) to pick up some more fireworks for tonight's birthday celebration.  Justin had received a box of fireworks from the owners of Jeni's via the VICTORIOUS Box a while back.  It was decided then that they would be lit up on the night of their 13th birthday.  I was standing there with a box of various fireworks in my hand, with a perplexed look on my face as I was trying to decide what the heck I was looking at!  The owner, Tom, saw me and came over to chat.  He asked how we were doing, as he hadn't really talked to us since he heard the news about Justin.  I explained that things were very up and down and that he probably understood how that goes because his sister-in-law was diagnosed with cancer fairly recently and is going through chemotherapy too.  I told him it was the twins' birthday and that we were going to use the fireworks that they had given to Justin, and I was looking for a few more to go along with them.  He took the box out of my hands and said, "Here, let me help you out."  He put the pre-packaged box away and dove into the cage of individual fireworks and started pulling out fireworks one-by-one and piling them into a box.  He said, "I want to do this for you. Anything that might make things better, even for a little while."  I stood there, with tears in my eyes, as he loaded the box into my car.  I know I keep saying it, but it's so true; people continually amaze me with their compassion and generosity.

The best birthday present for Justin!

We got a call from the oncologist this afternoon with preliminary results from the CT scan and the tumor appears to have shrunk 60-70%!  Praise God!

Carrying on with the treatments

Knowing that we are being admitted tomorrow for the next round of chemo has been weighing heavily on my heart.  I'm anticipating the raw emotional roller coaster that is chemotherapy.  I'm hoping that Justin can remember that it is working and that it's worth it while he's in the midst of it.  But, for tonight, we will put that aside and celebrate the two young men who are just entering the time of their lives when things change so fast and emotions are high at the best of times.  We will celebrate with our friends who have become even more important recently.  We will eat, laugh and maybe even shed a tear as we reminisce about the good times we have had growing these two to teenagers.  And we will end the night off with a bang! And forget, for a little while, what awaits us tomorrow.

Tuesday 6 August 2013

Another step in the ever-winding road

Back from another great weekend at the lake and gearing up for a busy week ahead.  This afternoon, Justin has another appointment at Cancer Care.  After last week's mishap, the doctor decided that even though Justin's neutrophil counts were good on Friday he wanted him to keep taking the GCSF shots until after the weekend.  The hope is that we will be told today to stop them.  Apparently while these shots boost the neutrophil counts, they can cause the hemoglobin and platelets to drop.  Hopefully, he won't need any transfusions and we can begin chemo on Friday without incident.  We also found out on Friday that Justin will be having a CT scan on Thursday morning.  There is no plan to do anything about it at this point, I guess it's just a marker to see how the tumor is reacting after two courses of chemotherapy.  The plan is after six courses, they decide to either try surgically removing what they safely can or radiate at that point.  He would then undergo his remaining 8 or so courses of chemo afterward.  We are going into the third course of chemo on Friday.

Time Marches On

In the midst of all this chaos that has taken over our lives, we will stop and take some time to celebrate because this week Justin and Ryan turn 13!  On August 8th, I will officially have a house full of teenagers.  I'm not too sure how I feel about that!  The twins are going into their final year of middle years and Brennan is done high school and working at a job that is starting his 'grown up' career! Where has the time gone?  I remember the days when the twins were still in cribs, sharing a room.  I would walk into the room after their nap to find them babbling to each other with smiles on their faces or passing toys between cribs.  And years later, when they had bunk beds, telling them to be quiet and go to sleep because they would talk late into the night. They were best buds.  Now, with their own rooms and teenage temperaments, things are so different.  The brotherly bond is still there when push comes to shove, but they are struggling to pull away from their combined 'twin identity' and forge ones of their own.  They have always been so very different, but these differences are truly becoming more evident the older they get. Don't get me wrong, it's a good thing, but it's hard for a mother to see her little boys growing up and 'apart'.  They have always been the twins; a set, a unit.  I guess it's my fault for putting them in that box.  Now they want out of it.  So, I will let them.  Be your own man, because that's what you are becoming.  Young men.  Going through things that require so much strength and maturity because that's what life has thrown at you.  At all of us.  Be the men that I know you can be. But just know that you'll always be my little boys. ♥

Tuesday 30 July 2013

Two steps forward, one step back

After Friday's Cancer Care appointment, we got the good news that Justin no longer needed his GCSF shots at home anymore.  His counts were good.  After only three days at home, we were surprised but thrilled.  Especially Justin!  We took off for the lake and had a fabulous weekend full of beaches, boats and bonfires with great friends.  Trevor and Brennan had to come home on Sunday night because they both had to work on Monday but the twins and I stayed until Monday.  My aunt and her hubby live at Caddy Lake so we went there for the afternoon and had supper with them.  My cousin, Keith, took Ryan skiing and tubing behind the new Seadoo and took Justin for a cruise around the lake on it as well. They had a blast! We got home about 9:45 last night.  We had to go to Cancer Care again today.  Justin had a blood test and his line care done (where they flush the central line with saline and heparin to ensure that it doesn't get blocked).  The nurse came back with the results and Justin's WBC (white blood count) was really low, as were his neutrophils.  The neutrophils are the cells that are really important in fighting infections.  As it turns out, he should not have been off of his GCSF shots after all.  The doctor had thought that Justin was a week post-chemo at our last appointment, when in fact it had only been 3 days.  So, he is back on the shots....and NOT happy about it!  A mistake, but oh well!  Hopefully on Friday his counts will be back up and he can go off it again.  He has to be careful not to be around sick people for the time being and be very vigilant with hand washing. We need to get his counts up before next week so he will be able to undergo the next course of chemo.  Shouldn't be a problem with over a week to go.  Tonight is the La Salle Youth Group's head shave.  We will be there with shavers and cameras ready!

Thursday 25 July 2013

The fur (or hair) is flying!

Kris and Brennan before
Brennan and Kris after
 There has been a lot of hair flying around here lately.  As soon as Justin's hair started to come out, he told me it was time to shave it off.  Well, it seems he has started a trend around here.  In the past few weeks we have seen so many bald, or nearly bald, heads around these parts.  It started with Justin's friend, Daniel, who showed up at our door with his hair shaved even before Justin had lost his.  Next, it was friends Reiss and Travis.  After many days of nagging me about it, Ryan followed soon after.  The day I shaved Justin's head, my Dad and Trevor joined the bald squad.  Our neighbour Noah and my brother-in-law James were next. And it continues.  My clippers have been used so much over the past few days that I'm going to have to retire them and buy some new ones.  The other night, Brennan and his friend Kris decided it was time to join the ranks.  Kris has had long, curly locks ever since he was a wee tot so for him to take this stand for Justin was huge!  Last night, our neighbour Dason called and said he was ready to go for it and wanted Justin and Ryan to do the honours.  Since we do the "haircuts" out on our driveway, we do gather some attention.  Neighbours from across the street, Jim and his son Brent, wandered over and lined up at the chair for their turn.  I could probably start a hair salon in my house and do quite well, if I were to charge for it! The hair shedding will continue on July 30th as the La Salle Community Fellowship Youth Group is having a Head Shaving night for those who want to support Justin in this way.  We continue to be blessed by people who are showing their love and support for Justin.  To top it off, Justin is feeling better and better every day!


                                                                                                       Dason during and after (above)
           
 
James before and after
 
Brent, Justin and Jim
The Crew
Back Row:  My Dad (Tom), Brennan, Trevor, Kris
Front Row:  Ryan, Justin, Noah
 

Wednesday 24 July 2013

Blessings flow

While sitting in the hospital on Monday, I got a call from Brennan (our 17 year old son).  He told me that there was a table set up on Main Street in La Salle and kids were flagging people down and handing out juice boxes.  He stopped to see what it was all about.  He was told by the children that they were handing out juice boxes and accepting donations for a boy who has cancer.   His name is Justin Neudorf.  Brennan said, "Oh, that's my brother!"  They were also handing out orange ribbons.  I was asked by a friend from church, last week some time, what Justin's favourite colour is.  She wanted to tie ribbons to some of her trees in honour of Justin and remind her to pray for him.  I got an email on the weekend about an "Orange Ribbon Campaign".  We now have one tied to our basketball net in our driveway and one on our door handle.  Another neighbour boy also brought over some money last night.  He had a lemonade stand and wanted to give the money to Justin.  We will put this money with the over $200 we received from "Juice for Justin" and donate it to Cancer Care on Friday when we go in for our appointment.  Youth Pastor, Steve, also stopped by yesterday to see Justin.  He brought another VICTORIOUS Box, exactly the same as the original, filled to overflowing with more gifts.  He said the gifts just keep coming to the church.

They say everything happens for a reason.  It's hard to imagine any reason why a kid would get cancer.  It's amazing the way our community has come together for Justin...for us.  We continue to be blown away by all of this.  People we would never have expected to care, do care.  It's humbling.  It's inspiring.  Maybe that's the reason...

There's no place like home

We're home.  It was a long, miserable couple of days in the hospital, but we're home.  Justin was still feeling nauseous but was adamant about coming home Monday night.  Saturday's blog was very dark and full of anguish, and Sunday was much the same.  All Justin wanted to do was go home and be surrounded by the people he loves.  All day Monday he was counting down the hours until he could come home.  After the chemo is done, they have to flush it out of his system for 24 hours.  His chemo was finished at 9:30 on Sunday night, so 9:30 Monday night was the magic hour.  Monday around noon, a nurse came into his room with some good news.  It seems that the 24 hour flush is especially important after one particular drug and that drug was finished at 7:30 on Sunday so we could go home at 7:30!  We actually got out a little earlier than that and got home around 7:45.  We pulled into the driveway and were greeted with a "Welcome Home Justin" sign on the garage door.  Ryan (and some neighbour friends, I suspect) had been busy!  As we stood in the driveway, Trevor pulled a huge box out of the back of the truck.  To Justin's surprise, it was a punching/kicking bag.  Justin has taken Taekwondo and when he found out he had cancer, he had mentioned that he wanted one to write CANCER on and kick the crap out of it.  And he did just that! Even feeling as weak and crappy as he was, he round-house kicked it a few times.  It was short-lived, but really good to see that energy again.  As of yesterday, Justin is still having ups and downs with nausea.  He seems to feel really good, then it quickly turns and he feels really nauseous.  He is continuing to take his anti-nausea drugs and hopefully this will pass soon.  He also has jaw pain and feels achy all over, which are both side effects of the chemo.  Regardless of how he feels physically, his spirits are much better now that he is home. 

Saturday 20 July 2013

Trying to find the positive...

Well, chemo is in full swing and Justin is feeling awful. The VICTORIOUS Box got dipped into not once, but twice today.  It's hard to believe that just yesterday he was feeling so great; so alive and hopeful.  Today he is so full of despair; so bleak; so hopeless.  My heart aches to see him like this. I feel so helpless.  I'm his Mom.  I'm supposed to make everything better. What can I say to convince him that this will get better?  He knows in his head that it's the truth.  He's been through this once before and came out of it feeling great.  But these facts just don't matter when you are stuck in a hospital bed with toxins pumping into your veins, feeling like you just want it to be over.  How is anybody, especially a twelve year old boy, supposed to look beyond the reality of right now and look instead toward the future.  His future is a year of the same. To say it's not fair is an understatement.  Life is not fair.  We say it all the time to our kids when they complain about not having the latest gadgets or if they don't like their curfew.  These things that matter so much to so many kids, are so insignificant when you are a child who is fighting for your life. There is still much to be thankful for, don't get me wrong.  If I dig deep, I can find these things.  We have a great support system in our family, friends and community.  We are being surprised almost everyday with the compassion and generosity of those around us.  I know that we are being prayed for daily and I ask that you please continue to do so.  I have always said, right from the beginning of this, if Justin is feeling good ~ then I am good.  Well, my Justin is not feeling good right now.  Enough said.

Friday 19 July 2013

Cancer Care and The Stanley Cup...an unlikely duo

We were at home this morning, just getting ready to leave for Justin's appointment at Cancer Care when we got a phone call from my mom; she had heard that Jonathan Toews was going to be at Children's today with the Stanley Cup.  We got to Cancer Care and inquired about the Jonathan Toews' visit .  They weren't sure, but they were going to check into it for us. Justin had to have his blood checked and a check-up with the doctor to make sure he was ready to undergo chemo.  It was 10:15 am and we got word that Toews was going to be on the ward at 10:30.  The nurse was in the middle of taking blood and was about to start the IV fluids.  Another nurse came in and said, "Don't start the IV yet, he needs to go and see Jonathan Toews!"  We ran across to Children's and up to CK5 with moments to spare.  He walked into the room and immediately came over to Justin, asked him his name and shook his hand.  He then posed with Justin and the Cup for a photo op.  Ryan got there just in time to get his picture taken too, so everyone was happy!  We then had to go back to Cancer Care and see the doctor.  Everything was good, so they started his fluid flush and then we waited for a bed to become available on CK5 so he could be admitted for his chemo treatments.  We got up to the ward and chemo was started around 5 pm.  It's about a 6-8 hour process, so he won't be done until about 1 or 2 in the morning.  Trevor is staying with Justin tonight and tomorrow night, as he has to work on Monday.  I'm hanging out with Ryan tonight watching a scary movie...Trev's side of the bed may be occupied tonight after all! ;)

Thursday 18 July 2013

People are just good

A couple of days ago, a friend of mine brought over a box for Justin.  It's roughly 15x13x12 inches in size.  It's beautiful; covered with blue paper, silver metal trim and 3D red letters on the top that say VICTORIOUS.  On one side is a verse; "Don't be afraid for I am with you.  Don't be discouraged for I am your God.  I will strengthen you and help you.  I will hold you up with my victorious right hand." Isaiah 41:10   Inside the box are several gifts; some wrapped, some not.  They have been placed inside the box from people all over our community.  People Justin may or may not even know. The idea behind this VICTORIOUS Box is that whenever Justin is feeling down, he can reach inside this box and choose a gift.  These gifts were specially chosen to inspire Justin and lift his spirits when he needs a boost.  I come to tears every time I think about or look at this box.  This box that has been filled with things to help make my 'little boy' feel better in his time of need.  This box that has been filled by people who take time out of their busy lives to care enough about my 'little boy'.  I think about this box and I am filled to overflowing.  This journey is showing us many things, but one of the biggest things we are being shown is that people are good.

Wednesday 17 July 2013

Life, though a little different, goes on...

Justin started his first round of chemotherapy on Friday, June 28th.  He had treatments everyday for 3 days.  He was very sleepy and spent most of the time sleeping, which I think is a blessing.  When awake, he was very nauseous and the doctors and nurses were giving him various anti-nausea drugs to try to keep it at bay.  He was feeling much better a couple of days after the chemo and we were able to come home on July 3rd! Justin was so happy to be at home and without pain or nausea.  We had to give him a subcutaneous (under the skin) shot every day at home to boost his white cell counts, as the chemo knocks them out.  At first we had a health nurse come out to do it, but realized that wasn't very convenient.  Trevor (Dad) and I (Mom) were both trained to administer the shots by a nurse.  I did it once and was quickly fired by Justin!  It seems that Dad is the better nurse and will be the one doing them from now on! :)  We attended appointments at Cancer Care on Tuesdays and Fridays to check his levels and make sure he is in overall good health. After a week on the shots, his counts were good and he didn't need them anymore! On the weekend of July 12-14, we were able to go out to our trailer at West Hawk Lake.  It was so good to have a 'normal' weekend of sun, beach and boating, although Justin is not allowed to swim due to his central line.  It is now Wednesday, July 17th and we are gearing up for round two of chemo which starts on Friday.  I need to mention that we wouldn't have been able to make it through all this without the amazing support of all of our family, friends and the community that we live in.  We have been blessed with meals, goodies, gifts and prayers from so many.  It is incredibly overwhelming.  Even through this dark time, God is good and shows Himself to us through the love of others.  It's going to be a long ride....we're going to take it together.