Some days, I am finding it hard to sit down and write these updates. My mom looked great today – the swelling in her eyes has gone down, and she is very much herself. Check out the photos – I’ve added some new pictures of mom from the past few days. I called her early this morning to check on her, and she was in the middle of a visit with the daughter of her good friend. I told her what time I planned to arrive and gave her a message from my father, and she said she was looking forward to seeing me. Elliot and I arrived at the hospital around 11:30. On our way there, we coordinated the visits for the day – my mom’s friends Diane and Joey were coming to help out, and two of my mom’s co-workers (Pat and Bonnie) planned to come see us. On a side note…I wanted to thank those of you at the Montgomery College Library for your wonderful cards…we brought them to my mom today and she sat and read them all. She was quite touched, and so appreciative of all the love and support you have shown her.
When I arrived at the hospital, I was told that the nurse practitioner wanted to speak to me about the use of insulin. We got permission to take her off the floor today to go down to the cafeteria (and spend time with her grandchildren)…but, unfortunately, we were unable to get there. You see, they asked me to wait for the nurse practitioner, occupational therapy, and physical therapy before we went downstairs. I waited for the next 4 hours for them, and repeatedly asked what time we should expect them, but they never showed up. None of them. Not the nurse practitioner, not physical therapy, and not occupational therapy. I was really frustrated that we waited all day, that my mom was once again unable to enjoy a little bit of freedom and see her grandchildren. I was even more frustrated that my mom is not getting the therapy that they had prescribed.
I was just about to go ballistic when the doctor from the rehabilitation floor showed up…and informed us that they were hoping to move my mom to the rehab unit in the morning! That is amazing news, and it will ensure that she can start making some progress and getting the recommended therapy on a schedule. Unfortunately…when she moves to the rehab ward tomorrow, they will rescind the permission we just obtained, and she will NOT be permitted down to the cafeteria or anywhere else to visit with her grandchildren. I’m so frustrated by Hopkins!
Luckily, Elliot is a wonderful advocate. On one of his walks with Maya, he went on an excursion to find someone in patient relations to talk to about these limitations. We received a call this evening from a woman in patient relations who is about to make a presentation to the board tomorrow requesting a change in hospital policy to accommodate families in a more patient-centric approach to health care. She has promised to intervene and help us obtain permission for my mom to see the grandchildren, and she has asked me if I will share my story with the board to help illustrate the importance of family-friendly patient waiting areas. I guess that is something, right? Even if we cannot make our stay easier, I hope that we can make life easier for the next families visiting Hopkins. In the photos section, you’ll see a few pictures of us (and a few other families) waiting in the main lobby because there is no kid-friendly waiting area at Hopkins.
So…yet another positive update. Except things really aren’t that positive. We saw Dr. Olivi again today, and he said again how well my mom was progressing, and he promised he was doing everything in his power to get her to rehab at Hopkins so that they could start radiation as soon as possible. While he was talking to us, Elliot asked him if that now means that the prognosis was improving since we last spoke to him on Friday. He looked us straight in the eye…and said, “No.” To be clear, he still believes this tumor is aggressive and rapidly growing. He does not believe that the radiation and chemotherapy are going to be able to slow it down or stop it. He still believes that my mom is unlikely to live long enough to complete the full course of radiation – 6 weeks (and may not be healthy enough to even try to do the full treatment). He is doing everything in his power to try and give her time and quality…but he just thinks we are too late.
So, while I want to hold onto hope for a miracle, and while I love to report about good progress and signs of improvement…sometimes it hits me that all of this is likely just an exercise in futility, and the time we have left is short, and my mother is spending it in a hospital cut off from her grandchildren. I hope that Dr. Olivi is wrong…but the odds just aren’t in our favor. Just a reality check for all of us…progress is one thing, but the doctors see this as the “normal” progression of the cancer.