Funeral Arrangements

I just have a quick minute to enter my post.  I promise to come back and thank you all properly.  Please know that I am overwhelmed with texts, emails and Facebook posts.   Please know that I haven't been able to read each and every one of them, but I can guarantee that I will soon. When I feel sad, all I have to do is read one text or email and I'm good.  The support has been amazing.  I am never left alone.  Family and friends have been wonderful.

So, for now, in case you haven't been informed yet, Tony passed away peacefully on Thursday, July 3 at 11:25 am.  He was surrounded by everyone he held very dear to him.
The viewing is today at Vescio Funeral Home, Woodbridge Chapel from 4pm to 9pm.
Mass is on Saturday, July 5 at 9am at Immaculate Conception in Woodbridge.

I love you all for your very kind words of condolences.  I knew how special he was when I met him and am not surprised by all of these responses.  So on behalf of myself and my boys, thank you.

xoxoxoxo
Mary

"It's like a wake, but the guys awake"

Our family has truly been blessed these past few days.  People keep coming daily, some of which come every day.  It feels like he's a phenomena.  A miracle worker.  Can't explain it.  I'm just in awe of these past few days.  The first time people walk in they are anxious.  He reassures them and tells stories and makes them feel at home.  It is such a blessing to witness this man comfort people when they come in.  Each and every person is told a memorable story of an experience with Tony.  All smiles.  All jokes.  Everyone truly loves and adores this man.  It begins at 9am and ends 9, 10, 11 or midnight.  The staff ask to keep it down, but cannot ask us to leave.  As one security guard said, "how do I kick out people having a great time and laughing?"
Last night, a bunch of "men" came marching down the hall.  These men were guys who have played hockey with Tony for over 25 years.  They were all in the room reminiscing.  Only the men were inside....no wives allowed....LOL  It was fantastic.
What has amazed me, but not surprised me is the kids.....the baseball kids......my children's friends.   They are the ones that come daily.  They are the ones sitting/standing all around him, often 10-15 people at one time and just listening to his stories, like sitting at the campfire at the cottage.  They are the ones, who after a nice visit, send me a private FB message.  A letter to Tony.  Asking me to read it to him, because they don't have the strength.  So many memories.  I'm grateful for this time as my two fine young men experience this and will always have this to cherish forever and ever.

Both Tony and I love you all and are blessed to have you in our lives.

My husband, "the luckiest man in the world"

We have been truly blessed these past two days.  We have had tremendous support from family & friends.  I am finding my strength in this love.  Tony has been brave, courageous, funny & complimentary.  He has been having great conversations with everyone who comes to see him.  Telling many stories, making each and every one feel special.  Every text I receive from people asking if they can come.....I ask Tony and he looks at me saying ya!  Let them come!  He is definitely putting on the charm and grace with everyone.  Some very strong and others not so strong.  But that's ok.  Everyone handles these situations differently.  Two years ago, I would have been part those not so strong. We have been having many bonding moments and making special moments. Life is so precious.  Perhaps moments like these make us realize just how short life is on earth.  Both Tony and I are so proud of our two sons.  They each have a piece of their dad and I know that moving forward, Tony will be living through them.  Shining through them.
I would like to give a special thank you to my night crew because if it weren't for them, I would not be getting my rest to go another day.  I love and appreciate all that they're doing.
Although Tony is getting much weaker, he is still accepting visitors.  However, please text me on Tuesday, before heading down.  We would love to transfer him to another unit that deal with palliative care.  I just don't know when that will happen.
May God bless you all.
Mary

I truly did not think I'd hear those words today...

This week has been full of a battery of tests (again) in order for the qualifying process for a clinical trial.  He really needed this to happen.  Unfortunately, his health has taken a really bad turn.  His myeloma numbers have excelled tremendously over the past 4 days.  His kidney function continues to get worse.  His legs and feet are very swollen.  His spirit continues to be very loving and sweet and brave.
Today, I believe may just be the saddest day of my life.
Today, we received the bad news.  The team of doctors feel that chemo will do more harm at this stage than good.  He is not healthy enough to go through chemo therapy.  This news came from the very highest head at PMH.  She comes with 30 years experience in the USA and Canada with multiple myeloma.
We discussed palliative care moving forward and making him as comfortable as possible.
He currently has no pain.  PMH doesn't have any beds available.  Toronto General Hospital was on bed alert.  That left us with Mount Sinai.  I don't know how she did it, but the process is to check into emergency and wait to be admitted.  Like I said, I don't know how she did it, but within 30 minutes we were in a private room in emergency.  This evening he will be transferred to a private room.
He is accepting visitors for now, but I ask that you text me before coming should things worsen and he changes his mind please.  We were tremendously supported on the Multiple Myeloma walk this past weekend.  We hang on to that love from each and every one of you.
Please respect the fact that his parents and my dad still don't know, but we plan on telling them this weekend.
We find strength knowing that we are loved.  We have no regrets.  We have many friends and family supporting us either way.  Please respect our choice to ignore calls if we have to during this difficult time. Text messages work best.
We will keep you posted as best we can.......

I'd like to share something given to me personally at the end of the walk.  It came from a wonderful woman, lovely inside and out.  She gives me strength.  I find comfort just hearing her voice.  She was diagnosed with two cancers in one day.  She walked 5k this past weekend, on her own.

This plaque read:
"You never know how strong you are until being strong is the only choice you have."
I have this on my fireplace at home and every day I read it.
Munira, may God bless you forever and ever and keep you safe.
With much love to everyone,
Mary

The latest with Tony's health

He continues to be getting weaker.  Tumors in abdominal area keep growing.  He has zero pain, which is a relief.  I help him with all his daily routines now.  He is experiencing shortness of breath.
Yesterday, we had his MRI booked to qualify for his clinical trial.  Unfortunately, because they weren't confident about him going in for the test due to his tubes, they decided it wasn't safe.  By the time we got an answer, it was the next person's test.  However, luckily, oncology was quick to schedule a CT of his head and also check up on his tumors in abdominal area.  They also did blood work, ECG and a chest x-ray to eliminate possible fluid in his lungs.
The CT scan showed the tumors progressing.  It also showed one on his kidney.  The technician's comments says it is not interfering with passing urine.
Blood work:  Hemoglobin was at 76.  They are giving him 2 units of blood this afternoon.
                     Platelets were at 26.  He may need an infusion this week.  Still not low, but declining.
                     Creatinine was at 200.  Getting higher, not a good number.
So, they have hinted that perhaps he will be considered a level 2 in his health.  They are only accepting level 1.  So, what is the alternative?  Not happy with what they are hinting at.  We are still remaining positive in all this.  The plan is still to start him on chemo this Monday unless he gets declined.  This trial, we are told, are not strict, so here's to praying they bend their rules and allow him a treatment.  They are trying their hardest to get him help.

Keep praying for success everyone!

Last Sunday's Walk for Multiple Myeloma

On behalf of my family, we would like to thank each and every one of you who walked with us on Sunday, June 22. And another thank you to those that contributed towards this cause so close to our hearts. The timing for this amazing day couldn't be any better. Not a cloud in the sky and the temperature was perfect for a walk.  Although Tony is not feeling the greatest, my trooper of a husband wouldn't miss this day for the world. After our team photo, his speech to everyone moved us all. His reference to Lou Gehrig during his battle with cancer, referring to his words back then, how Lou Gehrig said he was the luckiest man in the world. Tony couldn't see it then. But, on Sunday, with tears in his eyes and a choke in his voice, he told us all how lucky he was, and knew it, meant it, realized it. Yes, we are truly lucky to have so many friends and wonderful cousins, extended family, a brother and sister and their spouses who really aren't considered "inlaws". And of course, our new Multiple Myeloma friends, caregivers, doctors and the entire oncology staff at Princess Margaret Hospital. Our team, GEMM Team, (82 + walkers) collectively raised $31,133 to date as I type and still counting. The entire Multiple Myeloma group raised over $540,000 and still counting. Way to go everyone!!! 
From Tony, Michael, Robert and myself, with lots of love, we thank you for all your support.

PMH has another plan

On Thursday, I awoke extremely anxious, as you can imagine.  I needed answers.  We needed answers.  The entire drive down to the hospital (a 2 hour drive) Tony was experiencing lots of acid.  He drank a cup of water with his breakfast.  By the time we got to PMH, he was in need of a tums.  While we were in the waiting room to see his oncologist, he said to me that he felt like throwing up.  I didn't have time to respond because it just came up.  All over the floor.  Nothing to catch it in.  The staff helped, but it was too late.  Luckily, they gave him a room with a bed to lay in and rest.  THAT CAME OUT OF NOWHERE!  

The girl in charge of the clinical trials came in first to see us.  She was extremely apologetic for the clinical trial application not being accepted.  The reason was due to his treatment (valcade) back when diagnosed. He has exhausted this chemo drug and that disqualified him from this trial :(  She was genuinely upset for us.  

So, we waited for more information from the oncologist.  When she came in, she sounded hopeful for another clinical trial.  It's called KPT-330.  A chemo that attacks the cancer cells a different way.  It is an oral medication.  Commitment as far as travelling is less than the other one.  It is used for patients with Multiple Myeloma and Non-Hodgkins' Lymphoma, Leukemia types as well as others.  Sounds hopeful.  As one friend shared with me....things happen for a reason.  Perhaps we were declined because this is a better one.  This drug is not yet approved in Canada or USA.  This chemo causes nausea, diarrhea, vomiting and weight loss.  But, they will be giving him pills to combat those symptoms.  His creatinin numbers continue to climb the wrong way.....The bone marrow test last week shows the myeloma is doing good, but those tumors continue to grow.  They are recommending a picc line for easy access for medicine & hydration.  He was told by oncologist to force drinking and eating food because this will kill his appetite.  Daily hydration via IV may be a must.  Actually, he is showing dehydration signs now so she ordered home care to do daily visits for the next 7 days.  These clinical trials have a qualifying process.  He needs to have an MRI of his brain, eye exam and I think an Ecogram.  As of today, still no call for appointment times :( Even the doctor wouldn't guess at how long this would all take. Meanwhile, he is on week 3 with no treatment.  One other concern was his platelets need to be over 75.  Thursday, he was in the 60's......Anyone know how to naturally increase this?  They won't give him a platelet infusion.  

He was sent to get hydrated via IV in the afternoon.

Afterwards, we went to the 7th floor to help the Myeloma 5km Walk get organized.  I helped them while Tony lay down on a bench in the room.  He was comfortable for a bit.  When I felt he had had enough, I gathered 82 hats, t-shirts, bibs & information sheets and packed them up and someone helped us carry them to my car downstairs.  We drove to visit his mom to wait out the rush hour traffic and relax.  At the table, he got sick again.......My heart aches watching him go thru this.  He didn't want food all day long.

This morning, he decided to stop taking the ridilin.  He was told it would suppress appetite and didn't take any today.  I was with him all day and every couple of hours was looking for food.  It's a good sign.  Was it because he had nothing to eat yesterday?  Was it because he stopped the ridilin?  I wonder.

Today, I'm not well.  I'm battling a migraine and feeling nausea and have funny pains in my tummy.  

Is it the long stressful week we had?  Is it a bug we caught perhaps?  Is it the hoping he gets approval for this new treatment ASAP?  

June 30th will really mark the most memorable beginning of this whole journey.  June 30th we were at a wedding outdoors and he had to find shade and sleep under a tree.  That's how tired he was. I'm thinking that was the day all this began.

HAVE YOU DONATED YET TO THE 5K WALK THIS SUNDAY????

If not, please help me help Tony help Princess Margaret Hospital.

We need more research to help find the cure.  As best make this a chronic disease.

GEMM Team.

www.mm5kwalk.ca

It's approaching 1am and my headache is much better.....goodnite everyone.