Sunday, November 8, 2009

Lovefest :)

At long last, I am adding to our blog. It has been a long road since the 21st of October, and so much as happened. Daniel, our wonderful boy, turned 4. We had a great party for him at the Railway Museum in Milton and Barry was able to be a part of that. It was a great day to see our son, who is growing up before our eyes, be so happy and so full of joy.
Barry has had another round, his second, of chemo. Things were pretty much the same, as far as the side effects go, but they just lasted longer, making him weaker than I have ever seen him. But as far as things look now, that may have been the last round of these particular drugs. The government may have rejected our request for Temozolomide (the chemo drug that will, along with his body, attack the tumours in his brain) however, the company that makes the drug has agreed to give Barry enough of the drug for 6 months! We are seeing the doctor on Friday to become more educated on this drug, and to make the switch. This drug is less harmful to the body, and could be the answer to our prayers. I will update after that visit.
Our visitors have arrived! Barry's brother, Steve, from Australia, is here for another 2 weeks. I am so glad he is here. I know he was blown away seeing his big brother so weak and so frail, but they have been able to spend time together, share their love, and reconnect. Daniel is so happy to have finally met his Uncle Steve from Australia, too! Thank you for coming, Steve. It was the right time to come.
Craig, Barry's son, and his mother, Barry's first wife, Wendie, drove up here from Missouri and Ohio. Craig adds humour and ease to our family, when things are pretty fragile. Wendie's mom, Dot, is here from England. Wendie and Dot have brought be comfort and distraction, both of which I needed. Daniel loves his new friend Dot, having a big brother around, and playing with Wendie. Barry has enjoyed the 3 of them as well. He is proud of who Craig has become, and what a great job Wendie has done. Dot and Barry has always got along so well, and her being here has brought back very fond memories. Wendie, dear Wendie, is even a welcomed distraction for Barry.
I admire Steve's open heart, and his willingness to help. I also love that we can just sit and do what Barry can, and Steve is happy with that. Craig is a smart ass, and I actually enjoy our banter! The boy can eat, and I am glad Wendie foots his food bill! lol Dot, you are so lovely, and I mean that! I didn't know what to expect, except that Barry said I would like you. Once again, he was right. You are smart, funny, kind to the core and a little bit scary, all which I think make a strong, lovely, wonderful woman. Wendie is lucky to have you, and now I am too! xx
Today we had a lunch, and so many people came out to celebrate with us. I believe there were 28 of us in total, which was great! Barry was very tired and left part way through, but thank you to Steve for running him home, and to Erin for staying back home with him. He liked having time with you, like the good old days. Thank you for everything you did while you were with him. You're the best! Bieke, Jennica, Mark, Wendie, Kristine, thank you for comforting me while I was so upset. It was hard seeing Barry leave, and it has been an emotional few days, so thank you for hugging me, rubbing my back, and listening to me. Samantha and Bieke, thank you for helping Daniel get his food. Bill and Sally, thank you for coming and thank you for the game for Daniel. I am sure he will love it, and we can't wait for another visit. Loretta and Roy, I know Stan and Muriel really loved seeing you, and Barry was a bit emotional with your love and kindness to us all, as was I. It was really a pleasure to meet you and to have your love and prayers. Peg, thank you for the support and encouragement and advice. Harold, we didn't get to talk much, but you are one crazy driver, and you brought me a few smiles. Craig, we missed you there, and there was definitely a void. Dot and Wendie, thank you, and thank you to Shelley (who was missed!) for the cushion for Barry. Bieke, thank you for the flowers, and as I type this they are filling our apartment with their fragrance! Kristine, I know you were in pain, but thank you for coming. Our bathroom chat was needed and I love you very much! I haven't said that before, but you have been a true friend through all this. I couldn't have done it without you! Rob, it was so nice to see you and to meet your children. They are so adorable, and we will have to have to get together so they can play with Daniel, and get to know their "cousin"! Aunt Kim, thank you for coming. It was nice to have you there, because you have been supportive. Uncle, we are glad you came and congratts on quitting smoking! I am not glad you have been sick, but glad the result is a smoke free you! AJ, I can't forget you! Thank you for coming, even though you have had a hard few weeks taking care of Uncle and all the other stuff you have dealt with. It was nice to see you smiling :)
Despite Barry leaving early, and being emotional as I always am, I had a lovely time and enjoyed seeing everyone. Once Barry is stronger, we will have to do it again!
Ok... enough thank you's! But I just wanted everyone to know they made the day special for me, and although I didn't spend a lot of time with each of you, and although I was a bit emotional, I was also very aware that Barry, Daniel, and I are very loved and cared for deeply. And that is what I plan on holding onto. Thank you :)
Bieke, who I was so lucky to meet so many years ago, left me this beautiful email today, that she wanted to share with everyone. So on her note, I will say until next time. Lots of love to you all xxx

You said that you were willing to open your blog to visitors and I would like to take advantage of this invitation. It was a great privilege for me to be present with all of you this afternoon. Whenever loved ones gather to support one who is suffering, I feel as if I have entered a holy place. I felt that this afternoon when I saw all of you there with your own level of suffering, worry, and care for Barry.
If you were to compare Barry's illness as a stone thrown in a pond then you could very well imagine how Barry, Sara, and Daniel would be at the centre of these ever expanding circles that wash over all of those who hold them dear. As I was thinking of this, I realized that what is important for all of us is to keep our eyes on these three who are at such peril.
We all want Barry to make it and none of us want to take away the hope that he can fight this. But we also realize how the odds are stacked against him and when we see him so weary and worn out by this illness we are overwhelmed by helplessness and sadness. By anger and despair, even.
At this stage of the game it can sometimes be very difficult to know what the right thing to do is but if we keep this family unit at the center of our attention, I think we will know what the right thing to do is. We will know when to act and when not to.
If we keep our focus on Barry, all of us, then I think we will come up with the most helpful solutions.
I can't imagine the place Barry is in now that he can not perform his role as husband, father, son, brother, and friend to the manner which he is accustomed to. I also can't imagine what that must be like for Sara as she is trying to take care of him and of Daniel. What I can see though is that this is a family where love runs deep.
I have had occasion over these past few years, since Sara and Barry moved back to Guelph, to observe them with one another and with Daniel. I am always struck by the amount of mutual respect, love, and care that they have for one another. It simply breaks my heart to think that they would have to lose one another.
But, how sad that possibility might be, it pales in comparison to the love they have had and they will always have. And this is, I think, what made this afternoon so special even if Barry wasn't able to stay for the whole of it. Sara and Barry have brought so many people together, a colourful bunch of characters who all love with a passion.
Thank you for letting me a part of this.
Bieke

8 comments:

  1. Hi Sara, Barry and Daniel. Reading your blog tonight and seeing the wonderful family and friends you have I know that you will be able to get through this. You have the love and support of many people but most of all the love you have for each other is strong.
    Enjoy your company...they have traveled quite the distance to be with you.
    Sending you all big hugs.
    Jill xxx

    ReplyDelete
  2. Thank you for updating us Sara xxx I am so happy to read how you your gathering went and certainly agree with your title 'lovefest' :) It is wonderful to hear that so many people are rallying around and celebrating family :) Bieke, thank you for the lovely words too - I know from speaking to Sara what a wonderful friend you are being and agree that by focussing on the strength and love of BArry, Sara and Daniel, we will find words and strength in how to suppor them.
    Once again, wishing we were there... would have been wonderful to have been at that dinner too xxxxx

    ReplyDelete
  3. Sara,the new drug that Barry is about to start is the "known drug" that Woody is taking in his chemo drug study. Just thought that you would like to see another parallel that our husbands' treatments are taking! We had very good news at our doctor appointment today...Woody's melanoma "spots" continue to remain stable taking these drugs (of course he may only be taking Temozolomide...as that is the only drug that we know for sure that he is taking...the others could be just a placebo...anyway...something seems to be working!

    Tennessee thoughts and prayers continue to be with you, Barry, and Daniel.

    ReplyDelete
  4. Hi Sara, Barry
    Could you let us know how you are doing, been over a month since your last post.
    Hope you both are doing well

    ReplyDelete
  5. hello to the people following this blogg..i am steve.... barry,s brother...this is a very quick update on barry.
    he as you know has a very agressive cancer and while barry has been fighting it all the way with chemo and radiation the fight is taking it's toll on him...he has lost alot of weight,his leg that was operated on has not healed up properly and he is now unable to walk properly...the nurses visit everyday to help relieve the burden on poor sara and the doctors are in close support as needed.barry for now has rejected going into hospital and at this time is still at home.
    the cancer has actually shrunk in some area's as we hoped, but it seems to of reapeared in more serious parts of his body.
    whilst barry is a very private person and keeps alot of thoughts to himself...he says that he is not much pain,i pray that he is not but with barry you would never know anyway.
    whilst we all try to remain positive the reality is that barry.... my brother.... is very sick and i personnaly have my doubts as to how long he can keep fighting...i wish with all my heart it could be different.
    SORRY to everyone for the lack of bloggs but it has been a very difficult time for all of us, most of all sara who has had to deal with this nightmare 24/7.
    please keep your prayers and thoughts of good will comming as we still have to hope in miracles and not give up hope.
    thank you again
    steve x

    ReplyDelete
  6. Sara, Daniel and Family, Bill and I are so sorry to hear of your loss, I know Barry fought to the end and your love and support gave him so much comfort and there is no easy words to take away your pain, but one day you will be reunited with Barry and have the life you so did deserve. If there is anything that you need, please call on us, May Barry rest in peace and our thoughts are prayers are with you all. Love Bill, Sally and Trevor.

    ReplyDelete
  7. Hello Steve
    Thank you for posting a update, I was worried.
    My thoughts and prayers are with you and your family.... Always keep the hope

    ReplyDelete
  8. I am so sorry, my prayers are with you and the family.

    ReplyDelete