Family Ties

We were supposed to have chemo #10 on January 28th, but admission was delayed by a week until February 4th.  Once again, Justin's neutrophil counts were too low.  His oncologist didn't seem to have a concrete reason as to why.  He figures that at this stage, after having so many treatments, Justin's body is just having a tougher time recovering.  Nevertheless, he did have his tenth round of chemo and it was a rough one.  He was nauseous pretty much the whole time.  Only four more!

Thursday was discharge day and, as always, Justin was in much better spirits once we got home.  Friday at the twins' school, they were holding a mini We Day in the afternoon and Justin really wanted to go.  He slept in on Friday morning and was feeling up to going.  He had a good time and met Virgin 103.1's Ace Burpee.  Justin approached him afterward and commented that while they have the same hair style, Justin wears it better.  Ace agreed!

The weekend was a busy one filled with skating, snowmobiling, and surprising Grandma Breckman (my mom) for her 70th birthday.  The boys so enjoy spending time in my old stomping grounds, Westbourne.  It's rural Manitoba at it's best.  There is such freedom in small town living; where dogs can run free and 13-year-olds can drive!  Yes, drive.  As in cars, trucks; whatever!   I have fond memories of driving around our family farm as a child and love to see the joy and pride on my boys' faces when they are able do the same.  It's a place where they can just be kids.

This coming weekend will prove to be another exciting one.  On Family Day, February 17th, Trevor's niece Coral is hosting her 3rd Annual Hockey Fights For Kids Shinny Tournament.  This year, she is holding it in Justin's honour.  All of the funds raised will go toward Children's Hospital, specifically the Cancer Ward, where Justin receives all of his treatments.  We have entered a team in the tournament - Justin's Warriors.  Justin will play goal with his brothers, Dad, and many good friends and neighbours rounding out the team.  I will not be skating as I value my limbs and would like to keep them intact!  I will be inside selling Fighting For Justin bracelets instead.  It will be a fun-filled day to support a great cause and hopefully we can raise awareness for Ewing's Sarcoma while we're at it.

Chemo # 11 is scheduled for February 25th.  We pray that Justin's neutrophils will be where they need to be and that it remains on schedule.  We only have four treatments left and I am getting excited that there is an end in sight.  Of course, he will still have full lung radiation therapy once all of the chemotherapy is complete, but we are nearing the finish line.  There is still much that is uncertain and there are no guarantees, but I can honestly say that I am looking forward to the future - at least in the short term.  We have applied for a seasonal campsite at West Hawk Lake again and hopefully we will secure a spot and can enjoy much more time at the lake this summer.  We also have Italy to look forward to.  Much of my time is spent researching and planning Justin's trip of a lifetime and it does help to keep my mind busy. 

I can't believe that it's been nearly eight months since Justin was diagnosed.  It's strange.  It seems like a lifetime ago and just yesterday, all at the same time.  As a family, this journey has changed all of us.  We have all had a realization of our mortality.  We have all found new areas of strength and weakness within us.  We have cried.  We have laughed.  We have fought, pounded our fists and screamed.  We have hoped and prayed.  But above all, we have loved.  When something like this happens within a family, it can either tear you apart or bring you closer together.  Though it hasn't always been easy, we have made a decision to love each other through this.  Ewing's Sarcoma will not win this battle.  It didn't know what it was up against when it decided to take on the Neudorfs.
We will be VICTORIOUS!

    Justin and Ace Burpee

 

 

Trying to make sense of it all

Christmas has come and gone.  We had a wonderful Christmas; enjoyed Christmas Eve service at our church, celebrated with family and friends, and even had a few quiet moments to just take in the joy of the season.  Now, the hustle and bustle of the season has calmed down and it is a new year.  We brought in the New Year very quietly.  Trev, the twins and I went out for dinner and then returned home to watch the Jets game and then a movie.  I didn't even make it till midnight.  I guess I was a little too tired.  2013 definitely took a lot out of me and 2014 promises more of the same.

Since I last wrote, Justin has had another round of chemo (#9 completed) and continued radiation therapy as well.  Today marks his final treatment of radiation at the tumour site!  He has made it through 25 treatments.  It took some time to fully affect him, but the radiation has made him very tired and he also has a "sunburn-like" mark on his back where the radiation was focused.  He says it doesn't hurt; it's just a little itchy.  We have some moisturizing lotion to apply and it seems to help.  He has also been suffering headaches for the past 5-6 days.  Today, the doctor said he's not sure what could be causing them.  He gave him a full check up and Justin shows no neurological symptoms such as blurred vision, nausea or vomiting, or limb weakness so that's encouraging.  If they continue till next Tuesday (our next clinic visit) he wants to do an MRI, just to be safe. 

After his surgery in November, Justin's chemo regimen was switched up.  Instead of receiving four drugs (Vincristine, Doxorubicin, Etoposide and Ifosfamide), he would now receive only three.  He would continue to receive the Vincristine and Ifosfamide, but a new drug would be added into the mix (Actinomycin-D).  With the change in drugs, Justin's hair started to come back!  He was so excited!  His head was covered with a fuzzy, white/blonde layer of down.  The eyelashes and eyebrows also began to reappear.  Unfortunately, while receiving radiation therapy, Justin's chemo had to be changed once again.  It turns out that Actinomycin-D is not safe to administer while receiving radiation.  Justin was put back on the Etoposide for the last two chemo treatments and, alas, the hair has gone again.  Now that radiation is done, at least for now, we will go back on the new drug and it is my guess that the hair will start to come back again.

The past month or so has had it's share of ups and downs.  I've rejoiced with friends over scan results that show tumours that are stable and show no new growth; I've grieved with friends who are dealing with a newly diagnosed child;  I've been tormented with stories of recurrences of Ewing's Sarcoma in teenagers - some whom I know, others whom I do not.  I am reminded nearly daily that this disease is ruthless.  It is savage and knows no boundaries.  It doesn't care who it devours.  And though I have never been diagnosed with this disease, the day we were told that Justin has cancer, it entered into my body and soul.  It eats away at me every day.  It has crawled inside my head; taunting me.  I HATE THIS DISEASE.  I hate what it has done to me;  to my family.  I am no longer the same person I was prior to June 28th, 2013.  My family is no longer the same.  We live in a constant state of stress; anxiety and fear.  Fear of the unknown;  uncertain what the future holds.  And through it all, I have to remain strong.  I may even do a pretty good job of faking it at times.  I do have days where I can say, "Yeah, things are okay right now", but even on those days it's not without effort.  Sometimes it is exhausting  just keeping up the effort.  

It's so important, now more than ever, for me to have faith that God has a plan for Justin; for all of us.  There has to be some reason why we are being put through this.  I am not privy to His plans.  I don't have the answers. This is a journey of faith and fear.  I flip back and forth between the two often.  I do know that God loves us all and that he didn't cause Justin to have cancer.  I also know that he can perform miracles.  And in that, I can find some peace.

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.

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.

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.

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.