Monday, November 06 2017
It's been two months since I posted a long awaited update on Tracy's progress. A lot has happened in that time so I already feel overdue to write again.
Firstly the not so good news, Tracy's tumour markers have continued to rise. Also part of the not so good news is that she has not yet started on the second drug (which could be part of the reason for the continued rise). For those that haven't read the previous blog update. The nirvana of treatments for Tracy right now is a combination of two drugs. This combintation had a 25% response rate in the trial compared to 10% for the single drug that Tracy has already started. Sounds like a good idea right? The downside is the cost, the second drug is $5000-$6000 per month as it is not PBS funded. However, we didn't realise this wasn't the only thing that needed considering.
One of Tracy's gorgeous young colleagues set up a GoFundMe page for Tracy. We had felt everyone had already done so much and didn't want to ask again but she stepped in, set it up and asked for Tracy's permission to press Publish. Her kindness and enthusiasm (not to mention effort) couldn't be wasted and so Tracy went ahead. We were blown away (AGAIN) by the amazing outpouring of generosity (AGAIN) from friends and family. Along with the money I had donated directly to Tracy we had almost enough money for her to have 3 months of treament (note: I'm starting to throw some good news bits in here so it doesn't get quite as heavy as the last post:-). We were so profoundly grateful and excited and all shades of things words can't describe. It's hard to explain what having hope restored feels like. We thought Tracy would be started on the treatment within weeks. Many phone calls back and forth with the nurses trying to make a plan (but not really getting far) led Tracy to her next oncologist appoint.
Enter roadblock #1 - Tracy needed to have a barage of tests done, ECG, you name it, before she could even be prescribed the drug. Tracy had all the tests and passed ok. Phew!
Enter roadblock #2 - Tracy was told that unless she is sure she can fund 12 months of treatment she is better off staying on the single drug as it may not be effective, if she starts on the two, and then drops to the one on its own. Never saw that coming!
This, coupled with the rising tumour marker news delivered on the same day, made for a very tough appointment. Tracy was pretty low afterwards when I spoke to her. I wish I had been there with her. I would've done everything in my power to convince her and the oncologist that we would and could do the 12 months, whatever it takes, because I believe, that when you make a choice from a place of love, somehow the universe has your back, just like it has had all the way through until now. Help and hope often coming from unexpected places and in unexpected ways. And also, because I know, that if her cancer progresses further in the meantime, we can't undo that and I couldn't forgive myself if I hadn't done everything I could have. Needless to say I am booked in for her next oncologist appointment and will be having that discussion. I do trust Tracy's oncologist and know she must have faith in it being possible for Tracy to respond to the single, less expensive drug, but I just dont want Tracy to miss out on the best treatment plan unless it is totally unavoidable. By Tracy's next appointment we will have another round of tests to identify if she is is responding and that will also help her oncologist to determine likelihoods. At the same I am also watching Tracy's wellbeing from a more subjective angle and I am reminded of those months before her diagnosis, especially the month or two right before it. I always say I wish I knew then what I know now so I really want to make sure we do everything in our power, ask all the right questions, advocate for her and help give Tracy as much time as possible.
So now for more good news. You see, the universe has already been fast at work, completely out of the blue I received an email from a reporter for The North Shore Times saying they had come across Tracy's website and they wanted to do a story on her. I sent it on to Tracy and within days her story was in the newspaper. You can read it here. Since the story was published, people have read Tracy's story and jumped onto her GoFundMe page to donate. Some people we don't even know, and may never get to meet, and yet they are reaching out and offering their support and writing gorgeous messages. It's pretty incredible, actually, completely incredible. One man of a similar age, shared a little of his own story, a battle with bowel cancer. Our father died of this and many other relatives, it feels pretty special to have a bowel cancer survivor offering his generous support to Tracy now. Another lady placed an incredibly generous donation and left a message saying she had been touched by Tracy's story in the paper, hoped it would help Tracy access the treatment she needs and reminded them to take of each other. A beautiful message and there are so many more like it. Tracy's army continues to grow, even when we think it couldn't, and long time supporters are continuing to walk right along side us. Everything from $10 to $1000 and so it keeps adding up and making a difference. I hope every single person knows just how much it means to us and that they can follow the updates on this blog as a way of us keeping in touch. I've said it before, but I will say it again... if you ever want to know if the human spirit is alive and well, bursting with compassion, love and kindness, you needn't look further than here. This is where love lives. Thank you:-)
Before I go, we have one more favour to ask. Tracy's case is moving forward and the end of November though into December will be an important time. If you can please keep us in your prayers and thoughts over that time. It's really hard to have to go through all of the past 3.5 years in minute detail. It takes time, energy and a whole lot of emotional trauma especially when we consider how different the outcome could have been. However, despite the difficulty, it is so important. Mike, Sharon and I will be right with Tracy every step of the way. Having all of your thoughts with us will give us extra strength to draw from.
I will post another update to let you know when I have more news to share about Tracy's treatment and tumour markers. This time we had to take the good with the bad, next time I'm gunning for a good news post. Keep a look out for it:-)
Hi. So glad I found this blog. I was hoping to follow on with Tracy's progress. Thanks for the update. Sending love and hope to all, Carolyn.
Posted by Carolyn on 07/11/2017 - 07:03 PM