by Allison Moore | Feb 23, 2016 | Day by Day |
My parents celebrated their semicentennial anniversary last weekend. What a cause for celebration! All my siblings, and two of the spouses, flew down from their far-flung homes around the nation. Here we are (with no young children in sight!) enjoying a wonderful celebratory meal together. (Thanks, Dad!)
If you’d like to read a little more about their early years as a couple, my dad has a couple of romantic posts on his own blogs: Blank Slate and Blank Canvas. He’s collected a lot of fantastic old photos from their lives before children, many moments they had completely forgotten about until the photos were found. Another reason to document our lives, even when we are busy.
Sunday afternoon, there was a lovely party with some of their close friends—and us kids. Among other things, my mom made Italian Creme cake from a recipe that was used at three of her daughter’s weddings. (Including mine!) It’s the best cake ever.
I am hugely privileged, I know, to have been born to such a committed family. I admire and respect the way my parents have loved each other for so long, adventuring through the world with lots of kids in tow (there are now 10 adult children and 16 grandkids.) As the eldest child, I have seen them go through numerous (often dramatic) seasons of change together and only become stronger for them. Children do look to their parents for example, and l know firsthand this is a possible way to live. They have always been supportive and intentional with their kids as well as each other. I’m experiencing more fruit of that now that my own siblings are helping me pay my rent each month. They just decided it was the right thing to do. I say its incredibly humbling.
Life has thrown some serious challenges my way these past two years, but I can’t stop finding things to be grateful for. This one is always right on top, though. To have been born to such amazing parents (and to be the sister of amazing siblings) is far beyond what I deserve. I just got blessed, I guess.
Happy 50th, Mom and Dad!
by Allison Moore | Feb 19, 2016 | Day by Day |
I’ve wanted to write about our initial transplant evaluation, but for the past few days, whenever I talked about it, I started crying. I guess I’d held on to a lot of hope for months, while sadness had stayed inside of me, not allowed to take form until after this specific date, at a highly anticipated meeting where someone would finally start explaining the path to getting Vernon’s name the kidney wait list.
I took my dad with me. We drove up to The UC Irvine Medical Center, concerned we might be late. Turns out the meeting didn’t get started for another hour. I had to time to cross confirm Vernon’s transportation for the day. The plan was that I’d represent him for the morning information session, and then I’d meet him in the afternoon for the physical consultation. I’d arranged all of this in advance with the UCI people as well as his transport people, who would bring him over from his morning session of dialysis.
There were about a dozen people attending the morning session, half of them in need of an organ. The facilitators were friendly as they collected our medical questionnaires (15 pages each), but immediately, one of them, Marisola, pulled me out of the room. She sat down with me and told me she was already concerned that Vernon’s functional status and perhaps this wasn’t going to work for him to arrive on a gurney. She also thought he might be too vulnerable to go through with a transplant, but I could still talk to the doctor and/or stay for the class. She did find out that the specialist that we’d be meeting with did indeed know about Vernon’s condition and had approved him to come and be evaluated. It didn’t seem right to leave before even learning specifics. We’d come this far, might as well stay. But it was not a great start. Though Marisola was very kind and compassionate when she spoke to me, I was already experiencing a feeling of doom that quietly grew throughout the morning.
I had brought a notebook and filled 12 pages of scribbled notes, hoping to catch every single thing Marisola said in the session, which was a required part of the process as one can only make an informed decision when one is aware of all the steps and risks involved. I just wish I could have been told some of this earlier. I’d been looking forward to this meeting for months, making it a fork in the road to our future. Once I knew if Vernon was eligible to be a candidate, we’d move on accordingly. We even had a handful of “offers”…people willing to be tested as a match for Vernon. Joe has been talking about wanting to give his for a long time…even though its doubtful his would be healthy enough. But thanks to him, I got this ball moving into the transplant court at last, starting with Tuesday’s evaluation and class.
Marisola gave a list of pros and cons to kidney and pancreas transplantation. The advantages were simple: Improved life expectance, increased energy, improved mental and physical well being, quality of life, and the biggie for us, dialysis is not required. The disadvantages made a longer list…among them, increased risk of cancer and infections due to immunosuppressive meds and a lowering of the body’s defense system. It didn’t take long for the truth to dawn on me that Vernon might not be a candidate because of his already compromised immune system.
But I kept taking notes anyway. We learned about what they look for in donors (and what would disqualify someone), we learned about the different centers that do transplant: that we can continue to try to get on shorter lists in other counties and states, if we want to pursue those tracks instead, we learned about the wait list (depending on one’s blood type, a 6-10 year wait, though it can be less, especially if one multi-lists or brings in their own donor), and we learned how donation does not change the life expectancy for the donor and they are only in the hospital for 2-3 days after surgery, but the recipient that will require multiple clinic visits and 7-10 different anti-rejection medications everyday for the rest of their life…in order to convince the body that the foreign organ is it’s own.
Marisola asked us to imagine getting a splinter in a finger, which at first seems just a small prick, but after some time passes, the area becomes red and painful, as the body tries to fight against this alien object. How much more does the body want to reject an organ that does not belong to it…but its on the inside and at first, you might not see or feel the effects? Though I had a growing understanding throughout the morning, this simple comparison made the risks strikingly clear.
(Interestingly, there was a lady in the room who was hoping to get her second kidney transplant after the one she got ten years ago failed. She also admitted she had stopped taking the medications. But I guess it was still worth it to her to try for another, regardless of the problems she’d had.)
Vernon was supposed to arrive at 1:00, via ambulance. When he didn’t show up, I called both the ambulance company and the dialysis center. It turned out that the drivers had taken Vernon all the way back home to be cleaned and changed. I was so frustrated again that they hadn’t consulted me, who had been prepared for this problem. But by then, it seemed pointless to have him driven back…our window with the doctor would now be shared with others, and from what I’d gathered, his wasn’t a hopeful case. Marisola was as helpful and encouraging as she could be, which I found comforting. She told me she’d have the doctor talk to me on the phone as soon as he could.
The next morning, he did call. He told me he had wanted to meet Vernon before talking more specifically, but that he too, thought it was a very high risk. He suggested more cutting-edge, aggressive transplant clinics that might be used to dealing with invalids. He also told me that risks were much higher for someone like Vernon than a normal, functioning adult. It was more of what I’d already been told, but I was touched that he took the time with me to explain in detail.
So I don’t have to give up on this. A kidney transplant is a possibility. It just doesn’t seem like the best possibility any more. This is something that is more likely to complicate and potentially shorten his life than extend it and give him better quality. Nothing has changed really, we will continue dialysis as we’ve been doing it, five days a week. Indefinitely.
We did come to the fork in the road, but both roads are equally disheartening and full of effort that outweighs the result.
I told Joe the news yesterday. He was disappointed, but he has been working out with the PT guys in the gym every day as he’s got his 100 Medi-care days after being so long in the hospital last week. They’ve had him standing more than once. He’s feeling strong and encouraged. I asked him if he’d be willing to move south, if we can find a nursing home closer to our house. He said he wouldn’t want to move in the middle of this. So that’s that. I won’t move Vernon without Joe. Perhaps we will revisit the idea later in the year.
Nothing has changed. Not really. Something in me changed though. I’m no longer crying…but I feel less hopeful about the future. I see it clearly as just keeping him alive but not actually getting him much better. And that is disappointing and depressing.
by Allison Moore | Feb 16, 2016 | Day by Day |
It was a very long day…one of those days where nothing comes together as you’d hoped.
Driving home tonight, Maki could tell I was tired and disappointed. “Art night?” he asked.
“I have to do a bunch of other stuff. I haven’t really been home all day.”
“I think we should just make some art. Do the other stuff tomorrow.”
“I don’t know…” I sighed. “It’s late. I’m tired. It was a hard day…it just started badly and never got better. ”
“Then you should end it well.”
What a thoughtful, caring young man he is turning out to be.
And so on his wise advice we did these…
(Justine and I collaborated on these two. Spot the kidney?)
by Allison Moore | Feb 14, 2016 | Day by Day |
Our time with Vernon this Sunday was as special as any other. It was just the three of us, the family. Vernon was happy to see us, and chomping at the bit to get outside. We brought art supplies. Because after all, nothing says love like bringing out the art supplies when we sit around a table together. No need to talk, just an appreciation that happens when we all are doing something expressive independently…together.
Vernon said he was drawing Maki across the table.
The Valentine Justine painted.
I asked Vernon to make a Valentine for me…But the one he was most interested in today was Justine (which I have to say is very fair as she has got the short end of Vernon’s attention lately.)
She and he had some every sweet conversations today…I can’t tell you now what about, but both seemed to be glowing in the other’s company.
In the meantime, I tried to fill out the medical forms for Tuesday’s appointment at UC Irvine. I know it makes no sense to be anxious about it because it has nothing to do with anything we can DO. What we will find out on Tuesday about whether Vernon can receive a kidney transplant has to do with elements that are already in place. We shall find out what they are after Tuesday.
So I’m trying not to hold me breath…but instead we go ahead in the direction we are facing…and on into our lives as they will happen.
Happy Valentines Day. In all of this, I don’t believe that romantic love prevails over all. But it doesn’t hurt to have it. That said, I do think LOVE prevails, whatever that means.
Justine herself said today…”We bring Daddy the medicine of LOVE. And he can’t get that anywhere else.”
She’s right, of course. And it’s an honor to provide it.
by Allison Moore | Feb 12, 2016 | Day by Day |
My wonderful friend Barbara Mitchner, who frequently sits with Vernon during dialysis, has been playing cupid this week. The other day, after her visit, she texted me a note to look in his bag for valentines. I pulled them out this morning, and was incredibly touched. She had brought large heart-shaped doilies and little red and pink paper hearts for Vernon to decorate. He’d made one for each of us, personalized with our handwritten names next to his. She wrote little notes on the back, describing how he had made each one.
Unfortunately, I realized too late that I’d left them there (thus no photos) but there was another surprise waiting at the front door when I returned home. A beautiful pink-papered box with a sparkling purple bow. The card had my name on it.
I recognized THAT handwriting.
Inside the box was a super-soft infinity scarf and a fabulous necklace. Well, Vernon, I don’t mind if I do!
Thank you for the thoughtful Valentine’s gift, Vernon. And thank you for pulling your creative strings to make it happen, Barbara! I mean, Cupid. My heart is full.
PS This is not the first time Barbara has left a random sweet gift at my front door. But its the first time Vernon has!
