Forever

This is a great song, so I thought I would put in on here. I put it at the top, so you could read and listen at the same time :) I have found my forever with Barry. As corny as it sounds, I cannot picture life with out us being a team, and that's just another reason among many, that Barry will win this battle.

We found out today from Dr. Ghert's office that Barry is not a candidate to have his femur cut off above the affected area and then a donor femur put back in place. We didn't actually get to speak to the doctor, so we aren't sure of the reasons, but after being told that the recovery time for this is 6 to twelve months, Barry knew that it wasn't the right choice for him. Who wants to look forward to that, really? I know I wouldn't want to be faced with that.

So, Barry is going to go ahead with the plate screwed into his femur option. Along with that, he is going to have some radiation, I believe it is 3 sessions 7 days apart. Dr. Basur, the radiation doctor we saw on Thursday, said that because of Barry's amazing response to the chemotherapy, he feels and hopes that it will reduce the cancer in his femur as well. Here's hoping!! It was nice to hear the positivity from him.

We tried to call Dr. Armstrong, the orthopedic surgeon that we met at the emergency room last Saturday, to arrange the operation, and low and behold he is on vacation until October 5th! Lovely. So then I tried to call the nurse at Grand River to refer Barry to another orthopedic surgeon, and the entire cancer centre was closed. At 4pm. Frustrating. Very frustrating. But we will call again first thing Monday morning, and try to get this all arranged. So much waiting.

I am also waiting for a woman from Henderson (the hospital in Hamilton) to call me with information about the very expensive drug that could help Barry. That will at least give me a starting point and some information to arm myself with. A friend of mine suggested to have a big fundraiser, like a stag and doe, to get enough money for one month's treatment, to get him started and to see if it would work. I love the idea, but don't have the time to organise it. I know people are always asking if we need anything, so anyone out there with huge ambition that would like to do this, by all means go ahead lol. I wish I had the time to put something together, because I really think this is the missing link to getting rid of this cancer. Its something we have to try. Fundraiser or not, we will get this drug for Barry!

Today was a hard day for Barry, emotionally. I can't begin to describe how it feels to watch him suffer like this. I know I have said it before, but he has always been so strong. Barry's parents told me that as a toddler he used to carry big rocks around, and once he pulled a tree stump out of the ground himself, and I have seen him carry things that would take two men normally. Now he doesn't have the strength to use his crutches, and a trip to the washroom wears him out. He needs a seat in the shower, not only for fear of slipping, but because its hard to stand for so long. He has to plan his trips to the washroom, because he is slow, he stays in the car instead of coming into the store, because its so much work to get in and out. Tonight he was really angry and frustrated at what he has become. I can only tell him it will get better so many times, both of us knowing that it might not get better for a while, if at all. We are being hit hard lately, and we are both finding it hard to stay strong. And the sad thing is, all we have is faith. When that starts to waiver, we become weaker, and then we can't stay as positive. Its all a vicious circle really. I think today's frustration is because we were so busy with errands, and Barry couldn't help. He did some dishes while I was out (he waits until I leave to do things I would tell him off for doing if I were home!) and he handled some important phone calls, but I was out all day running around, and he wants to take care of me and Daniel. This part is hard for him.

I didn't want to go and do all the things that had to be done, and I think perhaps if I was less vocal about that, it would be easier for him. So I am going to make an effort to keep those feelings to myself. I don't always want to make all the meals and do all the cleaning up. You have to keep in mind I am not the most domesticated wife lol. Barry enjoyed cooking, and always took over what I started. He washed and dried the clothes while I folded them. He washed the dishes and I put them away. We were a team, we filled each others holes, we were in sync. Now its me doing these things, and he wants to do them. Although for some reason he still won't sneak into the bathroom and clean the toilet.....

Support and kindness keep me motivated, so I thank everyone for hanging in there right beside us and not forgetting Barry's Battle. It means so much that there are people here for the long haul. That truly makes a huge difference to our attitudes. A nice phone call, or letter, or visit does two things: it takes us away from the cancer, and it (usually) makes us laugh at some point which lifts our spirits. We have heard so many times that people don't call because they know we are busy. Well, we have an answering machine, and I will 99% of the time put off doing the dishes (or something just as terrible) to have a lovely chat! Please don't be afraid to get in the way. We like pushy people that call and drop by unexpectedly! lol Please remember that :) And consider yourself told off lol.

Daniel continues to do well in school. He got another sticker for being a good listener. (I am beaming with pride!) He has been working on pulling up his own shorts/pants and can now do it without a thought. (he can count to 1000, read and spell, knows how to mix colours, but had no interest in dressing himself, go figure!). We are working on shoes, but those darn heels make it hard to get his foot in easily. His favourite friend at school is Emily and says he is extra kind to Colin as he cries every day because he misses his mommy. He is doing so well and we are so pleased he is finally in school! He has been asking to go for over a year now. We are glad that is over, because he never forgets lol.

We had the hospice lady, Peggy, visit with him on Wednesday. She read a book with him about the life cycle of a leaf (starts as a bud, forms into a leaf, changes colour, falls off, then dies) and he loves the book. She also said that things can change, but they are still the same thing. (the leaf changes colour but its still a leaf) and I think that has given him some peace. He is a unique little man, concerned about a lot, and this seems to have calmed him somewhat. And he told Bieke that we visit a lot of hospitals, so we haven't brought him with us since. I think that has made a big difference in him too. All this help with Daniel, from our family and friends, to his teacher, and Peggy, it reminds me that it does take a village to raise a child and it makes me feel good to have the support for him. Having Grandma pick him up from school and then having a pizza dinner, and a play date with Donna, and a trip to the park with Bieke, and learning so many new things at school, and a visit from Nanny and Grandad, and knowing he has a big brother out there, and getting a Koala from Uncle Steve, ALL help him to be a happier boy. It also fills in the gaps that Barry and I leave by having no choice but to fight this battle. I know he will be okay through this journey. Ok... I'm crying, but happy tears!!!

Time for bed now. Releasing this amount of emotion does also make me tired. But I think its good. It makes room for more, and I know there will be more tomorrow. Its cleansing and rejuvenating and good, even though its sometimes hard to see on the screen in black and white.

Lots of love to you all xxxxxx