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.