Blue Haze

Today's entry is going to be a long one! Go and get a drink, a snack, turn on some good music, and make sure your sitting in your comfy chair :)


I will start with today and work backwards.... sorry it has been so long!



Barry's first radiation appointment was yesterday, and his second was today. We were just getting ready to leave yesterday and AJ and Samantha (my aunt and sister) arrived. So they decided to take Barry to his appointment for me. What a nice and welcomed surprise, especially when Daniel said he wanted to go with them and then he did! I had 2 glorious hours to myself, which I spent talking to my wonderful friend Nykki in England, and then to my great friend Kristine. So basically I did nothing, and I loved every minute of it lol. Not that I don't love Barry and Daniel, however it was nice to just relax and to have zero responsibilities!! So thank you do AJ and Samantha!

Barry said the treatment was painless, and he had no side effects as of yet. They said he might experience nausea and headaches, but neither has presented itself. They have said that he will lose his hair, most likely within a few weeks. It is still all in tact so far :)

Barry was taken into the treatment room which had a big machine (hopefully I will have pictures to follow soon) which rotates around his head to radiate in the correct places of Barry's brain. They lie Barry down, position him correctly and tell him not to move. They put a strap over his head to remind him not to move because everything is very precise. Then everyone but Barry leaves the room and the machine starts. It turns to one side of his head, lasts about a minute (during which Barry sees things with a blue haze) then it stops, his vision clears, and it rotates to the other side and repeats the process, along with the blue vision. He described it as wearing blue tinted sunglasses and as soon as the machine stops, his vision returns to normal. That, along with the noise from the machine, are the only indicators that there is actually something happening. So after the minute on each side, he is done. It's that simple and he is free to leave. Setting the machine up in the correct place actually takes longer than the zapping itself!

Barry is also glad that he is in an express group and he has to register at the front desk, then let the girls in the radiation department know he is there, and then wait to be called, which was before he even had a chance to sit down! No long queues, or waiting, or signing this, answering that questions, etc. Daniel and I went with him today and Daniel thought the big machine was quite impressive but a little loud. He really doesn't like loud noises and had to cover his ears today. Funny little man!

We saw the radiation doctor today and he has given Barry a timetable to ween himself off of the dexamethasone (which is the drug used to reduce swelling in the lesions on the brain). Currently Barry is taking 4 of the 4mg tablets per day. On September 5th, he is to start taking 1 of the 4mg tablets two times a day. Then on September 8th, he is to take 1/2 of a tablet twice a day. On September 11th (Barry's birthday) he goes down to 1/2 a tablet once daily and on September 14th he stops the tablets completely.

The swelling that Barry did have once these lesions were discovered was very minimal and with the dexamethasone and the radiation, swelling should not exist by September 14th. Which is great!

Our question to the doctor today was when would they know if this has worked. This doctor (which I will remind you I am not fond of) said that this will be discussed with the oncologist once the treatment is completed. Charming, eh? I am glad I wasn't there (I knew to keep my distance and evening seeing him made me angry and unsettled) or I might not have held back my response to his answer. That being said, we hopefully shouldn't have to see him again, and if Barry needs to see a radiologist again, we will ask for someone other that him.

Our door has been revolving as of late, and I can see it continuing for some time! We have nurses, physiotherapists, dieticians, social workers, and family in and out! There is someone here every day, sometimes 2 or 3 different people a day. We love the visits from friends and family, but the professional visits are tough. I hate that our apartment isn't clean enough or tidy enough and Daniel loves to run around in just his underpants and a t-shirtand sometimes he doesn't like them visiting and he doesn't have a problem letting them know that. Its just stressfull from my perspective. Tomorrow we have the social worker and the nurse visiting. Thursday its the physiotherapist again, a trip to Daniel's school, and then radiation. Next week will be a little more quiet as Barry is done with the radiation on Friday.

Sunday, as you know, we went to Buffalo to meet with Barry's first wife and son, Wendie and Craig. There was a gap since they last saw each other, and it was time. As Dot said, who is Wendie's mum, it was long over due, regardless of Barry's health. And I think, if I can speak for all of us, it went well. Craig is so handsome, and polite, and lovely, Wendie has done a great job raising such a great son! He is now 21 and planning to join the Marines in the new year. Barry is so proud of him, he really is. What happened in the past is just that ,the past and we all came together to reconnect and start fresh. It made me happy, and I know Wendie was pleased, to see Craig and Barry together. Once Wendie recovers from her super long drive, she will send me some pictures and I will post some here.

We drove to Buffalo, with Daniel as well, and met them at their motel where we just talked together. What a wondeful sight to see everyone talking and laughing together, no fighting, no bad feelings, just being together. Daniel was not so sure of Craig before we arrived. You see, he had asked us a few weeks ago for a little sister, and then we tell him he has a big brother. He was not pleased lol. I told him to wait and meet Craig and then we could decide if we liked him. Well, Craig gave him a little football and played catch with him and taught him how to throw. Needless to day, Daniel loves him and was even referring to him as his brother! He was asking questions, saying, "why is my brother not drinking his water?", "why is my brother this, why is my brother that?". It was very sweet and I loved that he just accepted Craig as his brother once they met. We had a nice lunch and then went back to the motel for more talking and we called Dot, Wendie's mum, in England. It was nice for me to put a voice to the face and the kind words she has sent to us, and all the lovely things she has done. Barry said she sounded the same as he remembered and that it was great to talk to her again. He has always been fond of her, and its nice to reconnect again. He really enjoyed it and it brought back many great memories of laughter and fun!

I hope that we can see Wendie and Craig again, and we are planning a visit at Christmas, before Craig joins the Marines. Wendie said that the Marines fly parents to North Carolina once they graduate after 13 weeks, so Barry has that to look forward to. That meant a lot that she would want him there to share in that experience. Someone told me, and I can't remember who it was, that it is good for Barry to have goals, to set his sights in the future, to actually see things happening, so that he doesn't dwell on the cancer and become overwhelmed with pity and grief. So now we have Christmas to look forward to and then Craig's graduation, and then his birthday with Steve on their roadtrip! I, as Barry's wife and the one that sees his ups and downs, appreciate these "goals" that Barry looks forward to! It really does take his mind off of things for a time. I can't believe that he is looking forward to Christmas as much as he is. I think its not about the gifts, as Christmas can always feel, but about connecting, sharing, and laughing. Laughter is Barry's best medicine, and good friends and family mean more to him now. I hope that through all of this ordeal, and Barry's battle, that each and every one that reads this takes that sentiment from this. Life is short and precious, and savour it. Everything can change with the drop of a hat.

Barry has received 2 more cards since I last updated the blog.

1. June and Fred Rosenberg, from BC, Canada who are friends of Jenny, Karen's mum in Australia. Thank you for your prayers :)

2. Trish Zuppa from Buffalo, NY, also a friend of Jenny! Thank you so much, and we were just in Buffalo!!

Please keep the cards coming, and if you haven't sent one yet, you still have time to make it before his birthday! Barry is doubtfull that he will receive 50 cards with 50 pennies. Lets show him it can happen! xxx

I also wanted to say a thank you to Steve, Barry's brother. The phone calls are great. Please keep them coming. I know it can be hard, being so far, and Barry feels the same way. The phone calls bring you guys together and bridge the world. Barry seems to have a skip in his step after speaking with you. And Daniel loves to hear about the Australian animals. He can even spot OZ on a map of the world now!! xxxx

As I said above somewhere, Daniel is starting school soon. He goes Thursday to meet his teacher, Mrs. Manford and to see his classroom. Then the following Thursday he actually goes to school for the entire day! I think I will need a box of tissue that day! Then the following Tuesday he starts his regular schedule of Tuesdays, Thursdays and alternate Fridays for the entire day. Barry and I sit and talk about it and wonder where the time has gone! Nearly 4 on October 29th! He's not a baby, or a toddler, but a little boy now! A big boy, if you ask Daniel! We're so proud of him!!

Well, I think I have said more than my fair share! I haven't written in a few days just because of time! There never seems to be enough of it lol. Wonder why that is??? haha. So now that your bums are numb, I will end here.

All my love xxx

Wow... nearly 1000 Visits so far!

The support we see in so many ways is almost overwhelming! Barry can't believe that so many people have made this many visits to read about his battle. Nearly 1000! Who would have thought it!

I have a few thank yous to some special people, so please bear with me.

Bieke, thank you for our visit. Marianna and her 2 friends made that such a fun time for Daniel! He loved their dancing while he played the piano. He rushed home to tell Barry all about it! And our talk was so nice, although nice doesn't really do it justice. I always feel you are behind me 100%, and never judgemental. You are so smart when it comes to children, you should have had a dozen! The way Daniel opened up to you, and the queues you take from him.... wonderful to watch! And the chocolates are now gone, there is nothing better than Belgian chocolate!! Yummm!

Hannah and Mark.... thank you for our dinner this evening. You must have put a lot of work into that, it was great and yummy! It allowed me to spend more time with the men here, and then I could put my feet up afterwards! I am touched and blessed by your kindness. And Daniel loved his truck and art supplies, so thank you very much for making him smile. Your kindness is appreciated more than I can express xx

To Steve, Nykki, Jen, Jill, Dot, and all the other people that post comments here and on face book and in emails, thank you so much! I may not reply to them all, but I read them all and they motivate me to stay strong. Thank you.

If anyone wants our email address, it is threebears1959@yahoo.ca . We would love to hear from you :)

Tomorrow we are visiting Barry's son Craig and his mum Wendie. I am glad that after all these years, they are finally going to see each other. The past is the past, and we are all moving forward, something that isn't always easy. Daniel thinks its weird that he is a big brother, and doesn't like the fact that he isn't the oldest of the two of them lol. Once he meets Craig, I am sure it will be water under the bridge and he will see the advantages of such a BIG older brother! Craig is 21, and sounds like a great man! We can't wait to meet with you guys tomorrow!

So not much more to post. Barry is still thinking a bandanna for his head might be the way to go. I may have to go to a bike shop and see if I can find something nice and rugged for him!

Oh, and I bought Barry's birthday present. Its still a secret, so don't tell Barry! He has said all along that he is lucky number 7 in the 10% that can beat this disease and he has never faltered from that one bit. So I have got him a gold number 7 and a gold chain to wear it on. That way, through his treatments and everything he does, he will have the 7 to keep his eye on the prize and to give him the motivation to fight when he doesn't think he has the strength. It wasn't easy to find a number 7 charm, but with the help of Kristine and a few nights out, we were able to find exactly what I had in mind for him!

I am keeping it Kristine's house, partly because I don't want him to find it, but partly because I don't want to give it to him early! ! I find it hard to keep secrets lol.

Keep us all, including Wendie and Craig in your thoughts and prayers for tomorrow. Hopefully I can post some nice pictures of Barry and his sons. I look forward to seeing the 3 of them together. And I won't forget to pack the tissue.... for Wendie and I!! Craig, Daniel, and Barry will probably laugh at us, but we're moms. This is a great thing!

So for someone with not much new happening, I have said a lot!

Lots of love xxxx
Sara :)

Ups and Downs

We just returned from the Radiologist appointment with Dr. Fontin at Grand River in Kitchener. I have to say that I have had higher opinions of other doctors. Perhaps it is my perception, but the doctors at Grand River seem to lack in personality and compassion. He was calling Barry's knee a "boo-boo" which was so condescending and inappropriate. I am angry that they are resigned to the fact that nothing can help Barry. I am certain that positive thinking makes a huge impact on healing. I know doctors are scientists, but there profession is a balance. I HATE that they are giving up on Barry, not fighting for my husband, the man I love, my soul mate.

I have to say that I am angry, and frustrated after our visit. They are going ahead with the radiation, starting on this coming Monday, for 5 sessions. He will go to Grand River once a day for 5 days and they will radiate his entire brain. Because there are 8 lesions they feel instead of pinpointing the exact lesions, it would be more effective to cover the entire brain. They way it was explained to us is that each lesion is made up of millions of cells, and between each cell there are thousands more that are so small they can't be detected by CT or MRI scans.

There is no way to stop the cancer at this point. They can only slow it down, and radiate places that are hurting, like his knee. The doctor said 6-9 months, a year might be stretching it. Damn them for giving up, damn them for not trying. BARRY IS A PERSON, not just cancer. He is first a person, son, brother, father, husband, friend. And we will not give up. We will get second opinions. We will fight! Barry has cancer, cancer does not have Barry.

I am being realistic, I know this isn't good. But where is their hope, their positive thoughts?

I felt claustrophobic listening to this doctor speak. It was as if there was a smile in his voice and it was pushing against me, taking my breath away. I got up and left and didn't hear his voice again. I just couldn't be nice and pretend to care what he said. I stood in the hall and just sobbed, a long empty hallway that is usually bustling with nurses and patients, completely quiet and alone: a parallel to how I felt at that moment. Daniel came out and asked if I was sad because "mommy's mommy" was in the clouds. (mommy's mommy is how Daniel refers to my mom, who for those that don't know, died when I was 11 when she was hit by a car while walking to work) I cried harder because I always felt cheated that she wasn't here for so many things, like when I got married, or had Daniel. Now I am ok that she wasn't here for those. But I wish she was here now, just to hug and help me through this. I felt full of sadness and yearning for Barry and Daniel, and for me. Pity will get me no where, I understand this, but today my heart was hurting. I still don't know how Barry makes it through this and is so strong for everyone.

The drive home was a little sobering, the cool breeze and the sun filling the car. I felt better by the time we got home. Barry's attitude makes this easier, yet harder at the same time.

When we got home, the physiotherapist arrived shortly after. John was a positive, upbeat, caring and sensitive man. This is what I want for Barry's doctors. He was technical with some of the things he said, yet down to earth and caring. It was nice to have him visit. He doesn't think Barry's hand problems or knee are related to the cancer. He gave some exercises for Barry to do over the weekend, and he will return on Tuesday. John is confident that things will heal and Barry will have less pain in his knee within 2-6 weeks, and that his hand will be fully functioning within the same time frame. All good, because the knee problem is what is limiting Barry the most.

Barry received 2 cards today with pennies, so he knows about it now. He was touched, and we are both excited to see how many arrive. I am hoping for 50, because it is his 50th birthday! I will update daily the cards Barry receives. Thank you so much for today's arrivals!

1. Uncle Herold and Aunt Peggy, from St. Catherine's. Daniel loved the frog! xx

2. Veronica from Australia, a friend of Jenny, Karen's Mum. The three bears were wonderful. xx

Another rough tough emotional day. This afternoon we just relaxed at home. I think we all needed that. Some of us (I won't mention who, exactly) even napped for a little bit. I didn't feel like making phone calls or talking. These emotional days are tiring.

I received a lovely email from Linda, a kind woman I met at a party. She has been praying for us in her prayer group since she heard Barry was sick. I was touched today when she asked if her husband and his friend could drop in and see Barry. They have never met, but they want to show their support. Thank you. I am touched every day, even during the worst days, that people are so caring.

My dear friend Nykki, who lives in London England, sent a nice card that we got yesterday, and today her daughter Georgina (who was born the exact day and year as Daniel) make some lovely sparkly pictures for Daniel and wrote (with her mummy's help) a nice letter. He just loved them and now we have to buy some sparkles to make Georgie a picture (as per Daniel's orders lol).

All these little things make me realise what wonderful friends and family we have.

We love you xxx

Today We're Smiling :)

Today was a good day.... busy, but good.

This morning started with a phone call from Steve, Barry's brother. That really lifts Barry up, and it started his day on the right foot. Daniel spoke to him too and was amazed that there are a thousand kangaroos and joey's in Australia! lol I love his innocence and the way small things like that light up his eyes. Oh to be 3 again!

We called Barry's dad and sang happy birthday to him. Daniel loves that. I can have Daniel call any of you if you would like on your birthday... he loves doing it lol. And much better sounding than my tonedeaf self haha. Happy birthday, Dad! I know you have stopped counting, but without this day, you wouldn't be here! So instead of celebrating the number, lets celebrate the meaning! We love you xxx

We had a nice lunch today at Swiss Chalet, just the 3 of us, just like the old days. It was nice to just talk, to be distracted from this disease, and to laugh and be just 3 again. Daniel was well behaved, the food was good, Barry enjoyed his chicken pot pie, and it felt so normal, so Walker-ish. Pure bliss for me to be with my 2 men, and to smile.

Bill, a good friend of Barry's rang tonight and they talked and talked like 2 women! haha. They met when they both worked at the same trucking company in (I think) 2001! We lost touch with him when Barry first had melanoma in 2007, and it was nice to be back in touch. Bill and Barry always laughed so much and I think this was just what Barry needed. They both like Jim Carey and that silly humour, both like to talk shop, and just catch up about the "good old days". Thanks for calling Bill, and thanks for making me smile tonight too!

I did less crying today. Much less. So it was a good day. Thank you to Dot, Chrissy, and Steve for your love and words....all made me cry "happy" tears today!

Tomorrow we go and see the radiologist. We are hoping for a quick start to the treatment. The sooner they start, the sooner the lesions shrink and dissappear!

We also have the physiotherapist coming round tomorrow afternoon. I hope he can bring some relief to Barry's knee and help the mobility in his hand.

Ok... off to do the dishes that I have not done today. A not so great ending to a great day :)

Love to you all xxxx

It's Times Like These....

So there was no post yesterday. It was a busy, hard day again.

We went to see Dr. Knight, the oncologist at Grand River in Kitchener. We learned that Barry's melanoma is aggressive and now possibly even in his blood stream. There are growths on this shoulder, arms, back, chest, and abdomen. So with the brain lesions and the tiny lung spot we knew about, this was pretty devastating news. Barry has an appointment on Thursday with the radiologist to determine the course of action. Dr. Knight said that there would be at least 5 sessions, possibly more. So we will hopefully find out Thursday when this will begin. There are some possible side effects, and because they are doing this on the entire brain, Barry most likely will lose his hair. I am going to remind Aunt Janice that she said that she will shave her head in solidarity. Lets all keep her to that promise haha.



After the radiology, they will start him on two different types of chemotherapy. They are Carboplatin (KAR-boe-pla-tin) and Paclitaxel (pack-li-TAX-ell). Each drug has a list a mile long (ok slight exaggeration) that could possibly happen, most commonly the feeling of flu-like symptoms, nausea and vomiting, tiredness, weakness, skin rash, low white blood cell counts, to name a few! These drugs are given together, once every 3 weeks. The way the nurse (Christine) explained it is that there is a cycle that involves specific cell growth and death that needs to run a course before the next dose is given. Giving another dose sooner doesn't increase its effectiveness. They are the experts, so I will take their word for it.


Barry's parents came and visited after the hospital visit. It was nice to have them there, to give us some strength when we needed it. They are hurting as much as anyone one if not more, and they were here, not questions asked, even though its a 90 minute drive. Happy birthday to Dad tomorrow... I won't reveal his age...yet! :) And Mom on Saturday... Happy early birthday :) We love you guys very much and admire your strength. You have been rocks for us. Many happy returns, and great big squeezy hugs from the three bears!!

After they left, Barry and I had a nice chat, a big cry, and then got lots of cuddles from Daniel. Its amazing how such a young little boy can spread so much love. He gives us strength and courage and he doesn't even know it, and does it with such purity. I wish this could be bottled and kept forever!!

We also taught Daniel about 9-1-1 yesterday. There are times when I leave Daniel with Barry to run errands and such, and the doctor told us that Barry shouldn't shower alone, or the likes, because pressure from the lesions on the brain could cause a seizure. So we used general terms, and tried not to frighten Daniel, but stressed if someone was hurt or couldn't get up to dial 9-1-1. We went over what to say to the agent on the phone, and he already knows his address so we taught him to give that to the person on the phone. I guess this is something good to learn, and I believe he would learn it in school, but its always tough when you have to do it because he might actually need to know it. All in all, I believe he wasn't worried about it, and he didn't seem stressed by learning this.

I want to remind everyone that Barry's birthday is just a few weeks away. Please help me show him he is not alone and send your cards and pennies. We have new people joining our blog every day, and the number of visitors is rising every time we look! Its nice to open the blog and see a new member or a new message, so thank you everyone.

We went to Hamilton today, and Aunt Janice and Samantha watched Daniel. He LOVED going to the splash pad and had a wonderful time. This means so much to me and Barry because although we are doing our best, I know we aren't doing what we would like to with Daniel, for obvious reasons. I always have good intentions, but this piece of life we are living is so bumpy. I have guilt about this, so you taking him to the park and knowing he had so much fun makes me very happy. Thank you :)

Tomorrow we have a nurse coming from the CCAC (Community Care Access Centre) to get Barry on their charts, and to give him an assessment before treatments start. Apart from that, the week is pretty free, for a change, apart from Thursday when we have the radiology appointment. Its nice to have open time. I am planning to see Bieke on Friday. (she was my big sister through the big sisters association when I was growing up, and a wonderful friend today). I am looking forward to that time :) Tomorrow night I hope to go shopping for something special for Barry's birthday with Kristine, another great friend. I have a few ideas, but I will let you know what I got him once I actually get it. Barry says he doesn't want anything, but I want to get him something to show my love and Daniel's love for him. Something a little mushy, he would say lol.

What would we do without friends and family? It's times likes these you see the good in everyone, their best sides. And that works for me!

That's all for now... I know this post was kind of all over the place, somewhat like my thoughts. Sadness is at the forefront this hour. Next blog, optimism will shine through...that is my goal!

Love to you all xxx
Sara

A Few Ramblings.....

This weekend has been the worst weekend for me. I don't even know if I have truly digested the news, if I believe it, feeling like its all been a dream. Every moment, every new thing that happens make me think of the future. My heart breaks for Barry and for Daniel, my boys! I don't even think, that after a few days, my thoughts are clear. I apologise for the sappiness, sadness, and emptiness in my posts. I just can't swallow this news. I am also very angry. There are truly evil people, terrorists, murderers, monsters that would deserve this, not my Bear. Definitely not him.

One of the many things Barry has given me in our 12 years together is strength. I wish I was stronger, but after my initial meltdown, I am stronger, every minute, every day. And I can talk about this. I need to talk about this. I need to talk about other things than this. I may be a little distracted, but I am still me, Barry is still, well, Barry lol. So for all those that haven't called us, please stop being careful. Just call us. We are baffled that apart from Barry's parents, Barry's brother Steve, and one call from AJ, our phone has not made a sound!

Now that is off my mind, we can move on. lol

Tomorrow we are seeing Dr. Knight, the oncologist at Grand River in Kitchener. He is going to to over the new plan of action, discuss what the future holds, and what turns Barry's path is going to take. He will also let us know how the new lesions will affect Barry. Right now, the only symptom he has is limited mobility in one hand. When his arm is stretched out, palm down, he cannot lift his fingers up, and he also has a hard time gripping things. This could be due to the lesions. So far, no headaches, which shocked the doctors, but pleases Barry. We will update when we know more. But whatever the doctor tells us, Barry is determined to fight, to beat this, and to exceed all predictions.

On a lighter note, Daniel and I hope to make it to his school tomorrow, to scope the place out and possibly meet his teacher. Daniel has been wanting to go to school for about a year now, and finally its going to happen for him! He knows his teacher's name, and we visited the gated playground, and he can't wait until he gets to go properly. Although, he is most excited about bringing his lunch and bringing something for show and tell. We had to explain many times why he couldn't bring our cat Bella or his goldfish to school. Daniel is definitely going to keep us on our toes! lol He is so smart (sorry, but here comes some proud bragging haha) he can read, spell, write, add, mix colours (blue and red make purple, blue and green make aquamarine, etc) and he remembers everything! I know I am biased, but he is brilliant! :) School is going to be great for him. And really, it will be a nice break for Barry and I (although I am going to miss him like crazy)!!

Daniel has been affected by this, and we haven't told him much, but he picks up on our emotions. We are trying to keep this as normal as possible until Barry's treatments start and there is a noticeable difference in our schedules. We want to know exactly what we're dealing with and what is to be expected before we tell him much. Our cat Bella got sick a few months ago. She is 14 and Barry and I made the decision that at her age, if it was her time, we wouldn't intervene. It would be costly and tough on her. So we decided to tell Daniel that Bella was sick and could die. He was upset, but he was so kind to her, talking and singing to her when she couldn't be touched, bringing her treats when she was lying in the bathtub and not eating or drinking, ignoring her hisses when he approached. Then, after 2 days, she somehow pulled through and is now better than ever. So we made him so sad and upset and we needn't have done that. We don't want to tell him A B and C are going to happen and then D happens, but not A B or C! He is going to be upset, regardless, we don't want to confuse him.

If only there was a manual for all this lol I would by 10 copies and keep them in every room, the car, my purse, everywhere, for the moments I don't know what to do!!! And I assure you, they would all be dog eared, highlighted, and well read!

The reply to my birthday request from Barry has been great! People surprise me every day. Mom and Dad... always our support.... passing this along to everyone they could think of! Leah... your facebook request brought me to tears and was so touching. W... you know who you are... asking your family and friends, amazing! Funny how a lifetime apart has turned into a friendship! So I urge you to send your pennies and cards, and to ask your friends and family to join in this act of kindness! I am hoping for at least 50! That is the goal. Remember to send them so they arrive by September 11th!

Barry always tells me I am very wordy. When I look at these posts, I realise he is right! lol I guess if you are still reading this, you are ok with that haha. But now I should really go to bed. Our lovely little alarm clock Daniel sounds his chime promptly at 630 every morning!

So until tomorrow,
Sara xxx

A Penny for Your Thoughts?

So this is a secret post. Barry doesn't know about it, and he won't, until after the fact.

His birthday is September 11th. It is his 50th birthday. Can you believe it? Being 18 years younger than him (don't do the math lol) I can't. He doesn't act it, I can assure you of that haha.

Barry drinks his coffee from a mug that says "a penny for your thoughts" on the side. But I clean that mug at least once a day for him, and it got me thinking today.

I wanted to throw Barry a big birthday bash. That just isn't going to happen now, for many reasons. So I had to think of something else I could do.

So while washing his mug this morning, it came to me. And this is where I need your help.

Could you all send him a card this year, and include a penny? A penny for your thoughts, prayers, etc? I think that getting a large number of cards, with a penny, for your thoughts of him, would really touch him.

If you all join in, and all send a card, and have people that you have told about Barry send him a card, imagine the number he would get? Imagine the great feeling you would all give him, with your pennies?

All I ask is that you make sure he knows who you are, and tape a penny inside, and include "a penny for my thoughts" somewhere inside.

Our address is:

Barry Walker
5-8 Applewood Crescent
Guelph, Ontario N1H 6B2
Canada

Thank you all so much in advance! One card, one penny, and you will fill his heart! (and mine). Sometimes its easy to feel alone, especially now that he can't drive, doesn't feel in control, or even independent now. This would mean so much and remind him that you are all here for him!

So no telling Barry, but pass it on to anyone that knows Barry, or knows of him, or is praying for him!

Love,
Sara xx

Another Bump in the Road...

Not sure what to write today, but feel I should write something. This really isn't easy, at all.

We got a call Thursday night from Dr. Knight from the Grand River Cancer Centre in Kitchener. He had the results of Barry's MRI. Apparently there are 8 lesions on Barry's brain. They are 6-8mm in size.

This means that the IL-2 treatment is on hold. Apparently it causes fluid retention and swelling all over the body. Well, because of the skull is hard, the fluid presses on the brain. If their are lesions, they would add even more pressure, and could cause a stroke, bleeding in the brain, or who knows what else.

The course of action right now is radiation therapy, which should shrink the lesions. After that, depending on the size, they will either give Barry chemotherapy, or if they get really small or disappear, then we can head to Buffalo for the IL-2 treatments. Basically, it depends how the lesions respond to the radiation.

Now for the hard part. This might not get better. The tumours in the brain could eventually be fatal.

I asked the doctor how long he would have, and he said 6-9 months.

We are staying positive. Barry said he is not going to give up and let this cancer beat him. Now we need your support, prayers, positive thoughts, mojo, ANYTHING that you can do! Like I have said before, there are strength in numbers. Share our blog with your friends and family, churches, groups, anyone! Only good can come from that many people thinking of Barry, and we truly appreciate everyone around the world.

Yesterday, when we spoke to the doctor again and found out more of the details, my aunt and sister came and picked up Daniel and took him to the park for play and ice cream. I was at rock bottom, unable to think clearly. I appreciate them dropping everything and coming to our aid. Daniel didn't need to be here, hearing us so upset. Barry and I had our cry. And cry we did. Well, me more so than Barry. But we let it out, cleansed our systems, got out the bad thoughts, the fear, the anger, and now we can focus on the good, and Barry's battle. (well, I am sure I will have more tears.... I am not as strong as Barry! lol)

I also want to thank everyone who helped by passing on the news: Mom and Dad, Mel, and Aunt Janice. Letting everyone know is the hardest thing for me. With the reactions of others, it brings the emotions back... reliving it again. So thank you, so much, for doing this. xxx

Steve....oh Steve. Your message on here was so touching. I can't even put into words... xxx Thank you also for the phone call. It all helps to keep Barry's spirits up, and he said he felt so much better for having talked to you.

Barry's license has been suspended. I think that really ticked Barry off and it upsets him the most out of all this. Apparently the lesions are dangerous and could cause seizures or some other problems. But, once again, he is determined to get that back and get out on the road! He has a road trip with his brother in a year!!!!

All our love....the kindness and caring and love we have received is so wonderful. Right back at you all! xxxx

Sara :)

Hands...

With special meaning between Barry and I, and Daniel's first word (crazy first word) at 6 months.... I just wanted to dedicate this to Barry... I am never broken. I love you :) xoxox

Some sad news....

We just found out, not an hour ago that Barry has Melanoma in his brain.

I am sitting here typing this, not crying (yet) but in a total daze. I feel completely ill. Barry and I are just blown away. We didn't see this damn curve ball coming. Barry said to just shoot him. I think that's the best I can describe things now. We're gutted.

Barry had an MRI on Tuesday to check his brain. I guess Dr. Knight (the oncologist at Grand River Hospital in Kitchener) just got the results. I was out at the bank, and Barry took the call. He was numb and was just trying to take it all in. He didn't tell me until I looked on the phone to call my girlfriend, and I saw the phone number. He told me and I felt complete dread and fear.

So the specifics, as we know them, are that there are 3 to four lesions on his brain that are each 3 to four millimeters in size. There is slight swelling, and the man that called said he was surprised that Barry has had no headaches. Well, he hasn't, not one. He has sent a prescription to our pharmacy that he wants Barry to begin tonight, so I will get that shortly for him. Its called dexamethasone. For this case, its used to counteract the development of edema (the abnormal accumulation of fluid beneath the skin) which could eventually compress other brain structures. (thank you wikipedia for that info). Basically, it will reduce the minor swelling that Barry has around these lesions on his brain.

He is absolutely not allowed to drive now. I think that upset Barry because it takes away his independence.

They said they may have to use radiation therapy to try and minimize these lesions.

Barry will not be given IL-2 with these lesions as they are, most likely. That is the one thing Dr. Wong said yesterday in Buffalo. It becomes very dangerous because one of the side effects of IL-2 is swelling. With the lesions in the brain, they limit where any fluid could go during treatments, causing pressure on the brain.

So now we are in limbo again. We had a plan with the IL-2. It wasn't what we wanted to be doing, but it had to be done. We had a path, with a goal at the end. Now we aren't sure of the path.

Dr. Knight's office will be in touch with Dr. Wong tomorrow and they will hopefully figure it all out.

Please pray to your god, channel all good and positive thoughts to Barry, and above all, send us all strength and courage. We don't want pity or sadness. We need strength. There is strength in numbers.... you are our numbers!!

A great friend said take it one day at a time, take it one hour at a time, what ever will get you by. That is what we will do! We are keeping a brave face for Daniel. He doesn't need to know the details. He doesn't need to see us cry and upset and scared.

I will post any more news as and when we get it tomorrow. Thank you again, to everyone.
Love Sara xxx

329 km, 11 hours, 5 highways, 2 countries and a biology lesson later...

We're finally home! And what a long day it has been.

Roswell Park Cancer Institute is a pretty impressive place! Its not just a one building hospital, its more like a campus, with many buildings and streets and even a valet service!!

This was our day at the hospital, in a nutshell:

We had our car parked (we're living the life), checked in, waited, signed paperwork, waited, went to the clinic, waited and waited and waited, saw the nurse practitioner, waited, saw the nurse, waited, saw the doctor, waited, saw the nurse again with the pharmacists, waited, saw the nurse, waited to be told we could go, and then had the valet boys collect our car, and we left!

We learned a few things today.

1. Interleukin 2 (now to be referred to as IL-2) is not a chemical or radiation treatment. It is a biological treatment. We all have IL-2 already in our bodies. They have synthisized IL-2 and inject that back into the body to boost the bodies immune system. It stimulates Natural Killer (NK) cells and T-Cells to attack the cancer cells, hopefully wiping them out. When extra IL-2 is injected into the body, its almost like pulling the fire alarm on the immune system and it goes crazy, declaring war on the cancer.

2. There are 3 outcomes of IL-2 treatment.

1. 1... it works and it kills everything and studies done in the 80's have shown that when it works, all cancer is eliminated and it never comes back. There is a 10% chance of this happening and they have not determined what makes one person successfull and another not.
2. 2... it kinda works, but instead of killing the cancer cells, they are just stopped in their tracks. They won't grow, multiply, or spread, but they will also not disappear. This outcome also has a 10% success rate.
3. 3.... it doesn't work, the cancer continues to grow, multiply and spread to other areas. This is NOT going to happen in Barry's case so no need to further discuss it!! :)

3. Barry is going to start his IL-2 treatment on August 31. Less than 2 weeks away. He will go in on the Monday, and every 8 hours they will give him an injected dose of the IL-2. They will continue this until his body is unable to take any more. He may skip one dose, depending on how he is coping. Then he will come home on Saturday, and recover for a week. Then on September 14 he will go back in for another week, get injections every 8 hours, and come home the following Saturday. After this cycle (consisting of 2 admissions) he will have 6-8 weeks off. This time off will allow his body to work to help his body fight the cancer. Unlike chemo, which attacks right away and results are seen very quickly, IL-2 works over time. After the 6-8 weeks, they will do a CT scan and possibly an MRI to check the size of the few spots of cancer he has left (in his chest and lung). If it has worked, or the cancer has been stopped, they will do another cycle of 2 admissions. If it doesn't look like it has worked, which it will work, they will figure out another course of action (which we didn't even ask for an elaboration because this will not happen).

4. Daniel is not allowed to stay at the hospital with us. Barry will have a private room, with a cot for a family member or friend to stay with him. They, however, do not allow children to stay. To further add to the frustration of this, they only allow limited visiting for children, and as of now we are not sure how limited. So we are at a cross roads as to what to do. The nurse is looking into options with the hospital social worker. They reccomend that someone stay with Barry, but our options are limited, really, to me. And leaving Daniel for a week is really not an option. Barry's week long hospital stay (for his stomach operation) was very hard on Daniel. He had a few meltdowns because he missed his Daddy, and now he is very apprehensive about me leaving, and has let us know quite clearly he doesn't like me leaving, which is not like him at all. But we will wait for the nurse to call back, hopefully with a good solution that works for all 3 of us!

Dr. Wong seemed very nice. He was a rapid blinker, which I found very distracting, but Barry didn't even notice this! lol He was very kind, explained things clearly and very well, answered all our questions, and made us feel positive about the treatment. His staff all work as a team, and I think things will go very smoothly. We were told that Roswell Park handles the most IL-2 treatments in the country (USA), so this is the place to be, apparently! I feel confident that Barry will be in the best hands and they are prepared to handle anything that Barry's body will throw at them!

Ok.... I think thats enough for today. I am sure I have missed things, but really, its 1030pm and I am tired! Daniel asked to go to bed as soon as we were home, Barry is sleeping on the couch, and I am going to crawl into bed as soon as I click the "publish" button.

Thank you to everyone for your positive thoughts! There are people all over the world rooting for Barry and offering us support, and that keeps us motivated and feeling positive about all the rough patches. If you are reading this, please let us know by "following" our blog. Just click the "follow" button to the right of our latest entry. Seeing our supporters makes us smile!! Thank you :)

Good night :)

Hi Ho Hi Ho...

Its off to Buffalo we go.

Today is the day. Its finally here. Like I said before, we are nervous, because this is real now but is also reassuring to find out what the plan of action will be.

Daniel is very excited to be spending time at Nanny and Grandad's today. It is now 650am and he thinks its too long to wait and he wants to leave now! Its bad enough he is up at 630am every morning, we are not leaving this early lol. And who knows what the neighbours will be up to this early.... scary! lol

So I am keeping this short, as there will be more to add tonight.

Until tonight ... :)

Love Thy Neighbour....

Barry and I have a busy day today, and to beat the heat we left at about 8:20 this morning. So Daniel and head to the car while Barry hobbles down the steps and everything is so quiet and still, it was lovely! Even the temperature was bearable, with an almost cool breeze and the sun hiding behind the clouds.

Now our parking lot, for those that don't know, backs onto a townhouse complex. Past the fence is their parking, then their front yards. Being that it was still early, I wasn't expecting anyone to be outside over there! So when I saw a woman move in her front yard, it caught my eye. She was wearing a blue night gown which stopped just above her knees, and she was quite heavy set. This lady proceeds to bend over, and I thought to myself, 'its a good thing she wasn't facing away from me, or I would have had an eyefull!'. Daniel runs to play in the dirt and this woman catches my eye again. This time she has turned around and starts weeding her garden..... with no underwear on!!!!!! I could see her entire kit and kaboodle!! Thinking this is going to be a quick mistake on her part and that she would get a cold breeze right up her yin yang, I start to tell Barry, who is nearly outside at this point. Much to my chagrin, after I describe this to Barry, she is still there, bent over picking her weeds, showing us everything she owns! Barry and I are laughing so hard, I am nearly in tears. Who doesn't know they are showing the world their, um, assets? So we are nearly out of our parking lot, and I look back, and, whoop, there it is, STILL there lol.

We now know which neighbour NOT to borrow sugar from. And let this be a lesson to all: Gardening in a nightgown and no undies, is not a neighbourly thing to do!!!

When we got back (from picking up my passport, and collecting Barry's discs with all his imaging on them) Barry saw the commando lady and thankfully she was fully dressed.

On a completely different note, I spoke with the CCAC ladies (community care access centre, which provides any in home servies Barry needs, like nurses, dieticians, social workers, wheelchairs, etc) and they are going to have a physiotherapist come to the house to have a look at Barry's knee and try to get it feeling better. He has a hard time walking, and even worse time getting up and down stairs. So that should happen within the next week or so. They are also sending a nurse out, because they want to get an assessment of Barry before treatments start, so they have a base line of his health. They should come for that Friday.

I tried to call Daniel's school today, and I guess the secretary at the school board was misinformed! Turns out the schools aren't opening for another week yet! I couldn't get through so I brought Daniel to the school with me, and it was all locked up. We did see the special playground for the JK/SK kiddies. There is a black gate all around it to keep the neatly tucked in their space and safe from the big kids lol. There are even parking spaces outside that area for pick up and drop off just for JK/SK parents. It looks like they have their very own entrance inside the black gates, too. Daniel is moving up in the world, it seems! He was very disapointed that he still doesn't know his teachers name. lol

Ok.... of to get some things around here done. No rest for the wicked *grin*.....

A Visit to Dr. Steve

Today we went to our family doctor, Dr. Steve. It was just a follow up, to see how Barry's doing. Barry hurt his knee when he was still working, I think the second last day of work for him, and its been getting worse over the past weeks. Unfortunately the doc couldn't give him anti-inflamitories because of the stomach operation. Barry had an ultrasound on Friday, and they suggested that he have an MRI. So, as Barry has an MRI for his brain scheduled tomorrow at the Guelph General Hospital, Dr. Steve said to ask them to check out his knee too. If they can't, then we will deal with it on a later date. Barry has bigger fish to fry at Roswell Park, and that takes priority. So all in all a non productive visit, but nice to see the doc regardless. He is a pretty funny guy, and its nice to have a great doctor with an even better bedside manner. He has ruined us for all other doctors! lol In case he is reading this, he is a little lame at times, but that is part of his charm and I do point it out to him :)

Daniel got a postcard from Bieke today. She is in Greece and other places in Europe this summer. There was a 3D donkey on the front and he is over the moon. I guess its fun to get mail, when its not a bill! lol So thank you Bieke... you made his day :)

Thats all to report today. Boring day, which is sooooo nice! Its super hot (30C and feels like 40C) and it is clouding over because we are expecting thunder showers this afternoon. So with this weather, and all the running around we do, its nice to be able to stay in for a change!

For a Monday, this isn't a bad one for a change :)

Check out the link below for a little retro Boomtown Rats :)

http://www.youtube.com/watch?v=D0qNGYxUwmU

The Battle Begins.... Officially.

We are heading to Buffalo to have the first consulation with Dr. Wong at the Roswell Park Cancer Institute in Buffalo on Wednesday, August 19.

We found out Dr. Wong is actually Canadian. Funny that Barry can't have this treatment in Canada, we have to go to the United States, and the doctor is from Canada. ha.

As the day approaches, we are both more nervous. Until now, we always spoke of Barry's treatment in the future tense. Well, now we're approaching the future and its going to happen. Its somewhat easier to things are going to happen "down the road" than to say its going to happen on a specific date.

Scary as it is for us, we know that its a means to the end of this cancer! Barry is still strong in his belief that this treatment will work, and that he is "Lucky 7" in the 10% that find success with this treatment. He has never faultered from this mindset, and I love him for that! His positive attitude does give me strength, because if he is going through this and has this great attitude, I owe it to him to share his outlook.

Be prepared reading this that there will be mushy content. I am emotional and wear my heart on my sleeve. I will try to give warnings for those faint at heart lol.

We haven't shared too much with Daniel thus far about the treatment that lies ahead. When Barry was in the hospital having most of his stomach (75%) removed, Daniel began not wanting me to leave him. I realize this is normal, but for him it is definately out of character. We are hoping to have him visit someone from hospice after we know more of what to expect from Barry's treatment. I think they might better know what to say to him on his terms and help him cope and be ok with all of this. There is no manual that Barry and I can read and follow to get Daniel through this. So Hospice can't hurt, and we both want Daniel to be ok... and to understand on his level that Barry being sick is a good thing!

Until next time...

Sara :)