Can there ever be a more devastating moment in life then one when your True Love asks you that question and it’s not in jest, nor are they referring to 75 years in the future? I suppose there actually can be worse moments then that, but let me just say that so far, that one tops my list of the worst.
As previously mentioned, we paid a visit to the oncologist last week. Here we are …. acting silly and pretending that all is right with the world.
The POG trial has reopened, and Ben was left with forms to look over and sign if he wanted to be enter the trial. Today he signed the forms. I pray every minute that some geeky scientist will look at Ben’s tumour and have a “eureka” moment.
I found a peer reviewed study online from 2013. It mentions that in literature there are only 400 cases of collecting duct carcinoma described. It also talks about abnormal chromosomes, but unfortunately it did not tell me how to solve this problem. (I thought Google had the answer to everything?). In any case, it did provide the email address of one of the doctors involved in that study. I emailed him. He’s on holidays until September.
We discussed with Dr K about what to do next. He said that there have only been 10 cases of collecting duct carcinoma at VGH in the last 10 years, so there’s not much to look at when trying to figure out what might work. One thing is certain though … No more Cisplatin for Ben. Another thing is certain – he doesn’t react in the expected way to drugs, so hopefully he will react unexpectedly in a positive way. I believe. I believe. I believe.
Dr K said that Ben’s white blood cell count is horribly low. Chemo is not an option with his current count. He suggested waiting for another 10 days and then just treating Ben with Gemcitabine for cycle 2, but as we are hoping to have some quality time as a family next week a decision was made to try to start that chemo again tomorrow (Monday). Ben will have to have his blood tested again first…hopefully his white cell count will have improved over the weekend, or they won’t go ahead with it.
In order to enter the POG trial, Ben will need to undergo another biopsy. Probably from his liver. We don’t know yet when that will happen, as we haven’t yet handed in the signed consent papers.
Also, despite having been “accepted” to have his fractured pelvis cemented and a nerve block done to help with pain, we still don’t have a date. Those specialists are so over booked that we have to hope for a last minute cancellation somewhere along the way. I’m going to inquire again tomorrow.
In the meantime, the girls have gone with friends to Otter Lake for a week.
Here’s hoping they have a relaxing, joyful time.
Since the house is quieter, Ben and Zak got together to cook up a bit of a Mexican feast for breakfast yesterday.
It’s such a treat for me to watch them cook together.
On another note … shout out to my amazing colleagues who got together and gave us the most beautiful card along with credits for meal deliveries and gift cards for meals. I am so moved by their generosity. It wasn’t necessary but is so appreciated. People are so good and so caring, and make us feel so loved. We have really been blessed in countless ways since this nightmare began. THANK YOU OSG and FSOC. Thank you.
Hug your families xo