Back at KU in Unit 42, my home from home.

Well, I flew home on Saturday just in time for James's 11th Birthday on Monday. I had a meeting with Dr Abdallah Monday at 4pm and was admitted Tuesday morning. To start an intense salvage chemo for 4 days. It's called (VRD)PACE, each letter is a different chemo so quite a cocktail. Here's a pic of Kristy, me and my 'chemo pole'.

And a couple more from my picc line being put in in IR this morning.

How many screens do they need..

And placing the picc

So all going well I should be finished chemo by Saturday at 10pm and go home Sunday morning. As usual I can't wait to be unhooked from all the tubes so I can have a normal shower 😳.
We are also working on 3 options for my Plan B, as (VRD)PACE is only a bridge and can only last a couple of months. When I have a better idea of which one we end up with I'll write an update.
I hope everyone is doing well, take care.

Leaving Seattle

Well, where do I start? Sadly Seattle and my CAR T cell treatment didn’t go as planned. In fact it didn’t go at all. I failed to meet the criteria for the trial. They did a number of bone marrow biopsies but they didn’t show the required amount of cancer in my bone marrow. And unfortunately, the trial won't take into consideration the tumors that I have growing or the cancer in my lymph nodes.

In preparation for this treatment I have been off any other treatment (such as chemo) for over 2 months so my cancer has been progressing. Knowing I need to start a new treatment asap I flew home Saturday evening and I have a meeting with Dr Abdallah today (Monday). I think my options will depend on bloodwork telling us how I’m doing, but I will know more this evening and will post again once we have a definite plan. 

This is all so disappointing on so many levels, not just because my best option is gone, but also because I’ve had to cancel my remaining care givers which causes problems with flight, etc which I just feel terrible about. The fundraising that we did to help offset the cost of the trial is also weighing very heavy on my mind. There is still a chance of qualifying for the trial in Seattle (or elsewhere) at a later date, so we are planning to put the money into a separate bank account for when we need it. My priority at the moment is to find a treatment and stay alive. After that I’ll sort out all the other details. 

Sorry I don’t have better news.