We're On an Upward Swing

Again, a few days have passed between blog entries. I, unfortunately, am still sick. This thing, whatever I have, just won't give in and go away! It progressed from sore throat to a sore throat and cough, with a stuffy, yet sometimes runny, nose, and the fever has remained. I am just so tired, and I feel so drained, and quite grumpy. Its so easy, when feeling like this, to get caught up with feelings of frustration and self pity and things being so unfair. Right or wrong, it has happened over the past few days, but I am trying to be stronger, to make every one's life easier!

Bieke Bieke Bieke.... you have been our savour! We love our little man to pieces, but the 2 naps I have had when he came to visit you were just what I needed! After you guys left, both times, I got Barry settled with everything he needed, and I just slept! The food you brought fed Barry, and the time Daniel spent with you he loved! Daniel loves you, and your family, and now even your little dog Max! Thank you, from the bottom of my heart. And thank you, as well, for picking up the few things we needed today. A real lifesaver!

I told Barry today that I don't have time to be sick lol. And to show you just how strong Barry is, once again, he hasn't been sick at all! This man has had chemotherapy, is living with a sick woman, and still, he is not sick! He amazes me every day with his strength!

So earlier this week, the day after we heard from Dr. Hoey about the change in plans for Barry, Dr. Wunder's assistant called with dates and times with Barry's surgery. He is going into the hospital in Toronto on October 7th to have some tests done, and then will have his operation on the 8th. We have to arrive between 12 and 1pm on Wednesday, which is good because we can avoid the rush hour traffic. I don't know if we should bring Daniel with us or not. He was having some stress because he was at hospitals and doctors appointments a lot so we were keeping him away from all of that. He is a little worried about Barry being away for a few days (they said he could be in for a few days afterwards, maybe come home Sunday or Monday) and Daniel asked if he could only go away for 1 day. I am not sure if it would be best to bring him, so he can see where Barry will be and then bring him again when we pick him up, or if we should not bring him. Any input from anyone would be greatly appreciated! Again, I wish there were a handbook for this. I might just ask Daniel, and see how he feels about it all. Once Barry is in the hospital, Daniel has school on Thursday and Friday, so that will at least keep him occupied.

After Barb, Dr. Wunder's assistant called with the details, we had a call a few hours later from Dr. Wunder himself! I have to say that this call was really heartwarming, and it gave Barry and myself a great feeling about this doctor. He spent about 20 minutes on the phone with me, explaining the procedure with a few more details. He answered all the questions we had, and he was just so kind and down to earth! Most importantly, he was VERY positive. He mentioned the success that Barry has had with chemotherapy and said it is a miracle! He said people with melanoma usually have a low success rate, and Barry's progress happens to about 1 person in a thousand! When I told Barry what he said he started crying and kissed his number 7 charm on his necklace. It was an uplifting moment for us both. Dr. Wunder also said that Barry should get this drug that passes through the blood brain barrier because of the success he has had.

After my call with Dr. Wunder, and after Barry and I calmed down from being so happy, I called Grand River Cancer Centre to cancel Barry's appointment for Chemotherapy on Monday. When I spoke with the nurse there, I mentioned this drug (which I now know is called TEMOZOLOMIDE) and the nurse said she would talk to the woman in the pharmacy that assists in getting drugs that are not usually covered by drug plans or for people that don't have drug plans. Gloria (the nurse) called me back and said that the woman in the pharmacy said they need to get what is called a section 16 from the government, which essentially allows Barry to have the drug and allows either the Community Care Access Centre drug plan that Barry has to cover it, or if they won't, then he can get it paid for by Trillium which is an Ontario based program that assists people with drug costs. IF Barry doesn't get the section 16, then the pharmacy lady will contact the company that manufactures the drug and ask for a compassionate care donation (I think that is what she called it) which means the company will donate the drugs to Barry. If that falls through, we will have a fundraiser (Lori, I will need your help with this!!) and get the money that way! I will not rest until we get it :) So when I was speaking with Gloria the nurse, she said the doctor (Dr. Hubay, who is filling in for Dr. Knight, Barry's normal oncologist, while he is on vacation) had already dictated the letter requesting the section 16, and that it would be typed up and sent out by Monday, hopefully. Then, we wait for approximately 2 weeks to hear back from the government for a reply. People from Grand River will call me and let me know the governments decision, but Gloria said that they have received approval for this very thing recently and that she felt positive it would come through. If there is something you can do for us, it is to pray that Barry gets approval for Temozolomide, and that is operation is a success!

Barry's parents came for a visit Saturday, and although I was not feeling great, it was nice to see them and it was nice to just rest while they were here. I was pretty emotional, and cried a few times, but I felt so much better after their visit. Stan, Barry's dad, brought me 2 books about healing from a friend of his. As Barry's parents are planning to move here shortly from St. Catharine's, they are clearing out some things they don't want or need any more. Well, Stan had a really nice golf picture that he didn't want anymore, so he brought it to his golf club for them to use. The woman he gave it to, Delia, of course asked why Stan was giving away this picture, and Barry's cancer came up. She was shocked, but said she had something for Stan. Off they went to Delia's car, and she handed him these 2 books. She doesn't know why she had them in the first place, and why they were never removed from her car, until she found out about Barry and she felt it was all meant to be. She wrote little notes in the books and passed them along to Stan and myself to read. Delia didn't have a reason to read these books herself, or a reason to keep them in her car. Everything happens for a reason, and our lives are forever touched by Delia. Thank you, Delia xx (Stan, I hope you told Delia to read the blog so she can keep updated!! lol) It just touched my heart, Delia's gifts, and the random way it came about.

I want to send out a big congratulations to Jill Ooms, who has become a friend of mine through Jenny and through this blog, and who is battling breast cancer. Today she, along with her family, participated in the Run for the Cure, which raises money for Breast Cancer. I am so proud of her, for raising money for the cure, and for the emotional race she ran today, remembering those that have lost their battle, celebrating for those that have won their battle, and fighting along side those that are still fighting their battles! You are really an inspiration, and wonderful woman who always has a kind word, uplifting comment, and brings me a smile, despite your own battle. xxxx

Steve and Karen, Barry's brother and his girlfriend, sent me a lovely card. It brought tears to my eyes, and when I read it, it helps me to carry on with my part of this fight. It was so so lovely, and the words were so kind. I almost felt awkward reading those words about me at first, but it feels so good to read them. It was very kind, and very heartwarming. Thank you and we can't wait to see you very soon xxxxx

We have finally planned somewhere to have Daniel's birthday party at the end of this month. His birthday is approaching quickly and our apartment is too small to have little kiddies running around in it! So after many failed attempts to have it at a farm, or a nature centre, or a children's museum, we have finally found the perfect place for a party for Daniel. We are having it at a railway museum just outside of town. Daniel is a huge HUGE fan of Thomas the Tank Engine, the children would get to ride a street car, we can bring in our own food (which is not allowed most places, surprisingly) and we get a room to ourselves at a reasonable rate. I asked Barry how many children we should invite (I was thinking 4 or 5) and he said 10! I told him he better be feeling good enough to tag along if that many children were coming lol. Daniel is super excited and keeps telling us that Emily needs to be invited. I guess that is his best friend at school. Daniel was listing of some other children he wanted to invite and then he told me he wanted Mrs. M to come, his teacher. I guess he really likes her!! lol It was too cute :) He also took it upon himself to invite Bieke to his party, which also warmed my heart.

Its 11pm now and even with my nap this afternoon, I am starting to fade. Thank you to everyone who reads this. I know I have said it before, but knowing that so many people take the time to stay up to date means a lot to Barry and I. We have had nearly 3000 views since the beginning! Every day we find out someone else who is reading along and sending us support, like Jody and Paula (muah!) and Sir and others we haven't talked to in a while. Thanks. You all make us stronger. STRENGTH IN NUMBERS. Its how we make it through this battle xxxxxxx