Hey everyone,

Well, not the greatest of updates today, but it’s not all doom and gloom either.

So we’ve learned that Grace is no longer a candidate for the clinical trial.  I think they already knew on Friday when we met with them.  She doesn’t qualify for the trial or any other trial at this point.  This is because of her blood counts and also they have concerns with her lungs.  Her blood counts aren’t stable.  Even if they were to come up enough to start the trial, there is no guarantee that they would stay up at this point because they suspect there are other things going on too.  

I was telling Grace, I don’t know that this is necessarily a bad thing right now.  Her pain seems to be increasing just a little more each day.  The pain medication takes the edge off only for a short period but it just doesn’t seem to provide a lot of relief for her.  She has still been on medication for her pain and cancer related symptoms, but in terms of actively fighting the cancer, there’s been a standstill the last 2 months and no treatment to actually fight it.  Considering how she is feeling right now, enduring a clinical trial right now, the travel associated with the trial and a trial medication that could worsen her symptoms might not be the best thing for her this very moment.  So there is a part of us a little sad about the trial, but we’re not going to focus on that because we’ve come to terms that this isn’t a good time for the trial.  This experience has taught us what questions to ask and has prepared us for when she is actually ready for a clinical trial, so it’s not a complete loss.  Our focus now is getting her feeling better before revisiting any trial options.  Which at some point, we won’t have a choice.  This last chemo will only work for so long and then her only treatment options are clinical trials. 

So, no more cross-referencing pages of medications to see if she can take them or not because of a trial.  INTERESTINGLY, there’s a whole page of cancer-fighting supplements the trial team advised against during the trial, which makes me wonder about their potential benefits.  There obviously has been some proven benefits so we’ll definitely be looking into these! Like yesterday!!! We have nothing left to lose at this point!!! 

Meanwhile, we are going to get an appointment with her oncologist and get her started on the Enhertu (chemo) here.  Honestly, we can’t rely on KU to get her started this week or even next week.  We need to get her first treatment ASAP and then she can continue with it in Kansas City.  We are going to redo her labs tomorrow also.  If her blood count is still down, they are planning to do a blood transfusion too.  We are still planning to do the pulmonary function testing along with the consultation.  We are here and it’s scheduled for tomorrow so we are going to keep these appointments. 

The Enhertu is the traditional IV chemo.  She will have to do the treatments at the hospital, she will lose all of her hair, she will have a few rough days post-treatment.  The usual chemo package, which Grace isn’t thrilled about.  However, she’s excited to do something wild with her hair for the kids before it goes.  LOL!

For now, we are still in Houston, focusing on starting her new treatment.  Sadly, she doesn’t seem to be feeling any better than before our trip here when she was in the hospital.  She may say she does and still have a smile on her face, but I am with her 24/7 right now and she does not.  I anticipate, we’ll be able to go home not this weekend but the end of next week. 

If you’ve reached out to me over the last week and I haven’t responded, I am sorry.  I have tried to keep up with all of the texts and will go through them again soon.  I’ll continue to share updates.  

Some of Grace’s friends started a Super Bowl fundraiser on FaceBook.  I’ll try and attach the link for the FaceBook page below if anyone wants to purchase a square.  Just comment on Facebook post.  You should be able to see the squares that have been purchased today so far.

Grace's Super Bowl Fundraiser