Just back from a couple of days in NYC for Amber’s first dose of pembrolizumab. We went in on Sunday so we could be well rested for a 7:45 AM start on Monday. After an x-ray to confirm her port is looking good, we continued on to a loooong MRI, looking at both the brain and the spine. Amber is a trooper, as always, and did great. Then, we walked through Central Park on the way back to the hotel, enjoying a little fresh air and exercise.
Today (Tuesday) we got to start a little later, going in at 11:30. While waiting for confirmation of lab results and getting the pembrolizumab prepared by the pharmacy, the doctors and nurses came into Amber’s room with a birthday cupcake, gifts, and sang Happy Birthday to her! It was a beautiful gesture by the group, as they get to know us and we get to know them. They are certainly doing everything they can to make Amber (and us) feel comfortable.
While we were waiting, Dr. Kramer also fills us in on the results of the MRIs – both show as expected. A little growth since the last, but nothing to cause any additional concern.
Then came the infusion. With all the build up to this, and with all the importance we place on it, it was remarkably (and thankfully) unimpressive. Amber is hooked up to an IV (via her port) for 30 minutes, and the medicine slowly pumps in. And then they disconnect her, and send us on our way. It was almost a “really, that’s it?” kind of moment – but I’m not complaining. These were incredibly long days for Amber (and for us). But if this works as we hope, and it can be this non-invasive, we will consider ourselves blessed.
So now, we have to come back to MSK weekly for the next 6 weeks for routine labs and vitals checks, and then we go to three week cycles. We pray this works, that the tumor’s growth halts and then begins shrinking. It’s going to take some time to see results, though, so for now we wait and pray.
Matt, I continue to prayer for all of you (especially Amber). Stay strong little one!!! We are all pulling for you!!! Love to all of you!!!
Keith
So glad to hear all went well! Let’s hope and pray it works as anticipated! Can’t wait to see her back in school. 🙂
We wait and pray with you.
Hi Guys,
We were so glad that the new meds are not as bad as was thought to have been on Amber. All of you have been through far to much with Amber leading the way all along! WE would have stopped in months ago BUT I have been dealing with a darned infection of my good leg and lymph nodes in that area . We are not sure what has caused this to come on but I am finding myself spending a week in the hospital on Vancomycin until all of teh veins in both arms are shot and then I am sent home to recover somewhat until the leg becomes 4 times the size and as red as a cooked lobster and off I go again for another week of antibiotics. I did NOT want to have Amber’s immune system compromised in anyway because of my leg issues so it was best that I stayed home and prayed for all of you. If you are home this weekend and would like to come to the Highland festival in Scotland on Sunday ( 10/07/18) (( Yes, I know, the same day that you use to have the birthday party as I well remember coming home after working at the festival all day long, still in my kilt, etc with you offering me a much needed brew.!!)) PLEASE let me know, call me, text or e-mail me and I will arrange for your visit. You can come before teh festival is opened up officially at 12 noon ( anytime after 0900) OR come for teh opening ceremonies, watch the Highland Games, the celtic dance competitions, the individual Bagpipe competitions plus we have six bands coming to perform for teh crowds and a entertainment tent where a couple bands from Scotland ( UK) will be performing. Take care, call me if you need anything at all done!!! Reg & Elaine
Saying lots of prayers that this works ! Love you guys!
Sometimes being “underwhelmed” is fantastic! So happy to hear that Amber did well and treatment is underway; sending all best thoughts and prayers.