Julie was doing so well today, I decided to get her out tonight for a 4th of July cookout. First she had to have a PICC line placed. So thankful for the people who came in to do that on their 4th of July. Then things fell into place nicely with a late afternoon nap and timing with medication. I got her dressed up, and snuck past the guards, down the elevator, out the back door to the getaway car, and drove to Taylor’s house where the gang was eating hamburgers. Julie ate some watermelon and a good portion of trifle desert.
She got tired and wanted to go to her own bed, so I took her home and she quickly fell asleep in her bed for an hour, then I woke her up and brought her back to the hospital before they started looking for her…
We then watched the fireworks from the 5th floor, until she started to nod off.
Today was a simple day, with simple food and simple entertainment. Good friends came to visit, and we were with family. Julie and I spoke a little to each other about simple and joyful things. I was happy to have this day with her, one of the happiest days I remember.
At 6 AM this morning I woke to a very clear and calm voice that said, “I need to get up!”
It was not a voice in my head, it was Julie. That was the start of what has been a much better day. Julie is getting out of bed and transferring much better back and forth from her bed to chair and walking. She went for a ride in the wheelchair, and she had 6 oz of chocolate milk for breakfast and 4 bites of cream of wheat.
When I was pushing her in the wheelchair this morning she mentioned the people who came to see her yesterday. I was so surprised that she remembered anyone, because she seemed to be in such a deep fog yesterday, but she remember all the visits.
The biggest positive today is that her pain has been much more manageable. Her spinal pain pump was turned up yesterday, and as a result, she has had very little additional IV pain medication. This has helped her be more alert, and just feel better overall. When visitors came today she talked more and was full of smiles and expression. We are happy!
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Yesterday, Sunday, was a huge blessing for our family. We were able to have a really nice family day together with Julie awake most of the day. Today was different. Very tired and needing large amounts of pain medication. She slept most of the day.
Julie had another fraction, 3 of 10, of radiation to chest and skull today. Her pneumonia is improving, and she is able to drink and swallow now, but she still has no appetite. Only drank water today, refused everything else.
We had so many kind visitors today. Friends held her hand. She recognized them all and with effort mumbled there names, even faintly smiled, then would fall back to sleep. As they left she would wake up to whisper, “thank you for coming.”
One visitor was a latino lady who was a former housekeeper for Julie. She knelt down on the floor, placed Julie’s hand in one of her hands, then placed her other hand on Julie’s head, then bowed her head, closed her eyes, and was silent for several minutes. I decided to take Julie’s other hand in mine, and bow my head as well to participate in this obviously sacred blessing that this faithful christian woman was giving Julie. After that, the lady had 3 other friends who came into the room and prayed for Julie, and they all told me they would continue to pray for her, and me.
This was not the first time we have been blessed by this woman’s faith. We have holy water and prayer beads in our home that she has given us in other hard times. We are very humbled and grateful for this. Despite our difference in specific religions, we share the same faith that Jesus is our friend and savior, and that he is there to help us.
Tonight I was even more concerned about her unresponsiveness. I have lost some objectivity and get a little freaked out. So I called Jonny to come over, and we both pronounced a blessing upon Julie.
We are not the only ones praying for Julie. So many are praying. Close friends, family, distant friends, some who know her very little, and some who are total strangers who have heard about her. We are thankful for this. I am puzzled and amazed at the goodness of people, and their capacity for compassion. From such people I have learned much about what it means to be christian. Julie is among them.
Many of you might me wondering, “What next.” We have had some discussions about hospice care. Currently during most of Julie’s conscious moments she is enduring pain and suffering, and quite sad and afraid. She is ready for hospice if she choses. There is also a hope that she will endure until she can try a new cancer treatment called peptide receptor radionuclide therapy, PRRT. There are a few conditions to consider.
First, she would need to have the right receptors on the tumor cells. PRRT works by taking the peptide known as octreotide and attaching radioactive molecules to the octreotide molecules, then injecting them into the body. If the tumors have octreotide receptors, then the octreotide molecules and its radioactive particles will attach to the tumors and destroy them, or at least partially destroy them. First, we have to find out if Julie’s tumors have octreotide receptors, so we are planning on her having an octreotide scan this week.
Second, we have to find a place willing and able to do the treatment. There are some trials being conducted in the US, but it might take a few months to get enrolled into the trial. We are looking for other ways to shorten this wait, perhaps available as a private pay option. We are pressing forward with that search.
Third, she will need to endure and survive until the treatment, and one of the biggest challenges will be nutrition. Her brain is refusing food. We would have to find ways to keep her fed.
This PRRT is the final option, and not a permanent cure, and might add a couple of years, and eventually Julie will be back to where she is now. Still, that time would be very worth it to us, if she could enjoy it and not suffer continually.
I don’t know if Julie can make a definitive choice in her current state. We are taking one day at a time, and with each day, making the best choices we can, and looking forward and making what contingency plans we can. I am praying for guidance, and trying to put out of my mind what I would do, or what others might do, and steer this to what Julie would want if she could have a moment of clarity to decide. I hope that moment will come, so that we can decide together, and not me alone. For now when we discuss it she says, “Just lie down by me.” For now, I am happy to do just that.
Julie had a more bright expression today, enjoyed our visits. She endured more pain today so that she could be more awake and interact more, it was a very important day for us. Our family was together for the sacrament that was brought into the hospital room. I hesitate to say more about it, as it was a holy occasion.
Jonathan and Emily did a tap dance for Julie. We sang and prayed together. By the end of the day Julie was quite exhausted and uncomfortable, but we have that under control now, and she is resting peacefully.
Julie slept most of the day, she felt very sick, whenever she woke up, we kept her comfortable as best we could. We continue to be very concerned and are staying close together as family. We spent several hours together this evening in Julie’s room. We talked long, sang two songs together , prayed together, and cried much.
Not sure what to write, I will make brief what is an ocean of thought and feeling. Julie is not doing well today. Even though her pneumonia and basilar skull tumor are being adequately treated, overall she is regressing in other ways, which has grave implications. She is speaking better and breathing at ease, but she has no appetite, she is refusing food and drink. She has increasing pain and needing more pain medication, she has more confusion today, in part due to medication, and in part do to illness. This is an ominous cloud. Her oncology doctor had some kind but frank words for me today.
We have most of our children here this weekend, good timing. Jordan went back to medical school today, starts 2nd year Monday, missing him already. I am so glad Julie has these children, I am so glad to be with them.
Thanks to our friends and family, thanks for your kindness, your visits, and your prayers!