My dear friends Michael and Christian plus Walter and Mary helped put together the booklet for B’s service. You can look at it here. I hope you can see the joy that his life brought us.
Planning on getting the speeches once they are done, typing them up, and uploading so everyone can share in the celebration of…so so much. You all have said it in the comments over the past week, using better words than I ever could.
From rip.ie:
Removal on Saturday from Quinn’s of Glasthule to Mount Jerome Crematorium for service at 2pm. No flowers, please. Donations, if desired, to Educate Together.
I can’t thank everyone enough for all the kind words, thoughts, prayers, and practical stuff over the past few days. I’m having problems with words, but thank you all.
My beautiful, smart, funny, geeky, blue-eyed, bearded, amazing husband died last night with me and two of his aunts holding him.
last night, B was complaining of a headache. He got sick a few times, and when I went back into our room to check on him, something had changed. I don’t know if it was his eyes, or his mouth, but something was wrong. He tried to sit up, but couldn’t use his left arm. I asked him to squeeze my hand, and he couldn’t. I grabbed the phone and dialed 999, and, for the first time in my life, ordered an ambulance.
It was the right thing to have done. The insanely high WBC have invaded his body. They helped burst a blood vessel in his brain, abd he ended up having a massive bleed, also because his platelets weren’t very high.
He was responsive at the beginning, like while we were in the ambulance and in A&E being assessed. But now, 24 hours later, he hasn’t opened his eyes in a while. He can’t talk, abd his left side has been compromised from the bleed. He’s obviously been readmitted, and while our lovely care team on Anne’s ward tried to get him in, they just couldn’t get a bed available. So we’re on a different ward, and have family and close friends around. His brother and mother are flying in, and my parents as well. We were lucky that my Dad happened to be visiting right now, since he stayed with the boys while I was in the ambulance and hosp.
The doc, who we both respect, told me this morning at 3am that its a question of hours, not days.
We realized that we hadn’t put an update up, so here you go!
It’s been a rough week, obviously. At the same time, the amount of caring, love, support, kindness…it has been overwhelming. Thank you all so much for *everything*. We can truly feel your vibes coming from all corners of the Earth, and it means so much to us.
We have a meeting at St James’ Hospital on Monday morning, to see if B meets the criteria to join a clinical trial there. As our (fill in) doc said on Thurs tho, “It’s not a cure, but it might give you more time.” He is a kind man, but also very direct. So we’ll see how that goes.
On Monday he started B on 2 oral caplets of chemo, and at our Thurs meeting he upped that to 8. Yes, 8. I found out today that B’s WBC yesterday was 115. He was admitted in March with a WBC of 110. However, his platelets and his Hg were both up, without needing transfusions. This is good, cause it shows that the good cells can still be generated, and aren’t being fully crowded out by the immature WBC.
We’ll see what the blood test on Monday comes back like.
Beyond that, my father is arriving in a few hours to stay for a bit, on his way from Athens back to the US. It will be great to see him, mainly cause he’s my Dad, and also because he had cancer when I was about P’s age. A bit of his insight will be helpful as well, but also we just like being around him. Other members of the family are planning trips too, which means a lot to B.
So the weekend is one of quiet and calm and a bit of goofy (that would be my Dad). Which I think is what we need right now.
We also wanted to say many congrats to our lovely friends Jimmy and Michael, who were civilly partnered last week. They have been together as long as B and I have, and we are so proud and happy for them. Love you guys!!!
A slightly different post here….
The amazingly wonderful Nurse B had his last day of work today. In a few weeks, he and his partner are traveling SE Asia on their way to settle in Australia.
While B and I remember the fun and excitement of moving here (I think we were about Nurse B’s age as well), it’s slightly sad for us. Nurse B was the first nurse on St Anne’s Ward who I met, as they wheeled B into the room. He was lovely, kind, and spoke very gently to both of us, recognizing the shock we were going through.
After the other two times of finding out the chemo didn’t work, Nurse B was there to talk to B, and just sit and listen. He’s always there with a smile and a laugh, and has always been informative and overall, believe it or not, fun.
Nurse B, you have been amazing for us through all this, and we wish you and your lovely gf a happy, healthy, and always exciting new life. Now go explore!
I’m going to do this, so B doesn’t have to.
He’s being readmitted this afternoon. In the 3 weeks since his last bone marrow biopsy was taken, the leukemia has come back with a vengeance. Physically, you can’t tell looking at him. But the biopsy tells the story: the last biopsy they were looking at 4% leuk cells. Yesterday’s had 70%. When he was admitted, he had 80+%. We’re almost back at square one, but with less in our arsenal. Since the first two rounds didn’t work, we have less choices for treatment. He can’t get a transplant until he’s in remission (which he definitely is not). So it’s a “severely toxic” dose of chemo this round, with Dr M almost guaranteeing the common side effects that B sidestepped last time.
We don’t know what the chemo meds are, or the duration yet: Dr M says that she won’t know til the meds are in her hands, either later today or tomorrow. But I do know that as soon as she gets them, she’s going to start up the chemo.
B is in the boys room right now, playing Lego with them. We pulled P from school early, since if this round is going to be so harsh, we don’t know how long it will be until he’s well enough (or strong enough) to be able to see the boys.
Thanks everyone for all your support and thoughts and whatevers. They help us get through this a lot more than you know. Things aren’t looking the rosiest right now, but as Michelle, one of our liaison nurses said today, “There is *always* hope.”
Today was more of a downhill than a flat or an uphill. He won’t say it, but when I got in, he was tired and not so hot. Didn’t eat his lunch, took a nap instead, which he hasn’t done for a while. Headache, and slightly overwhelmed by people talking to him. I was getting worried, because something there was triggering for me.
I talked to both Nurse Sm and Nurse L about it. Nurse Sm (there’s a lotta nurses whose names start with S!) said that of course I’d think something was wrong, this is kinda how he was when he came in the first day. And she was totally right. A good nap, some meds for the headache and a nice juicy orange and he was looking better.
Beyond that, quiet enough day. Just talking and figuring things out, no big stuff. I didn’t get the numbers for today (I.KNOW! What is WRONG with me?!) but will get them tomorrow.
Today’s Shoutouts: Nurse Sm, for making me chill out; Viv, for the softball game for P; Claire P for the deeelish dinner (the boys had 3 bowls each!); and the lovely Roseanne, for helping me with my knitting needles.
He’s getting stronger, def. The boys visit was great, but I think it tired him more than he thought it would. The collective energy of a 4yo and a 9yo is pretty intense. Other Nurse D (we have two Nurse D!) was lovely to the boys, and they liked being there. Only a half hour, but I think we’ll wait a while on any other visits…
We walk the ward, back and forth. It’s about double the length of our house, so not very big. I beg each day to let me bring him outside, or even downstairs. Nope, not even with a mask. “He’s neutropenic, nope.” /sigh
While he was up this morning, he had the window blind open for a while, then the sunshine started to hurt his eyes. Wondering if I should bring in his sunglasses….
His numbers haven’t really shifted this week. He got 2 pools of platelets while I was there today.
WBC: 0.4
Hg: 8.9 (that’s with no blood for about 16 hours)
Platelets 31
We’re adding a new number here: Neutrophils. This is the biggie now…right now they’re at 0.0. They are the numbers we want to see coming back up, slowly but surely. I don’t know the range that they’re looking for, but that’s now the number to concentrate on.
As for how much longer, we just don’t know. I thought it would be another week or so, but I was told that it could be another 4 weeks. It all depends on the neutrophils and when everything starts to recover. B is getting the blood because his marrow isn’t making blood right now, and they have to keep the levels right (same with platelets, if even higher to protect against infection and hemorrhaging). The docs said that they’re expecting the numbers to start to rise in the next week or so, but if they haven’t started, they’ll give him a bit of growth hormone to see if that kicks the marrow back into gear. One doc said that caffeine is a marrow stimulant, but I don’t think I’m bringing him any triple espressos.
So for now, we sit and wait. And wait. Gin rummy is still fun. We were working on a project today that turned out to be nothing, but hey, it exercised our brains for a bit. Books are still out right now. I might teach him to knit, if he doesn’t watch his fingers….
Today’s shoutouts: Joanne, for the dinner (and cause she said she wanted a shoutout!); Nurse D and her lovely curly hair, no matter what you others think; Miriam and Roisin for coming all the way out here with a cottage pie for the freezer; and Magda who gets a perpetual one, cause she’s my biggest supporter right now, and I hope we can be hers (kick butt in volleyball!!!)
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