Begin at the Beginning: September 18, 2015

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This blog is intended to be read from back to front. I can’t figure out how to make that happen automatically, ’cause I’m too old for a blog. So, here’s a link to DAY ONE of our ordeal. Start there, and read backwards.

Go to the menu at the top of the page to see ‘START FROM THE BEGINNING’. It will scroll everything backwards.

Or you can click here:

Go Straight to the ER: D Day

And by all means, someone tell me how to make the blog read that way!  If you’re interested in our journey, follow us! We’re not going anywhere.

There’s also a weird glitch at Sept 23rd – 24th. You can get out of the loop here:

Well… Here We Go: Day 6 Part 2

Follow along. We’re so not done yet!

Chris

A YEAR AGO TODAY

A year ago today I knew we were in trouble when we got to the ER and they were waiting for us. I knew we were in trouble when we arrived in a private car, but they waved us past the waiting room. I knew we were in trouble, when I didn’t have to check us in.

 

I’ve written about pretty much every part of the experience of Lisa’s illness… except that day. But as this anniversary neared, I found myself flashing on to it. So, here goes…

 

THAT DAY

 

One year ago today I was sitting in a meeting at Disney Television Animation. I was with Michelle and Kay. And Jay. I didn’t really know him at the time. So when my phone started buzzing. And buzzing. And buzzing, I was distracted by it. It was an important meeting. You know the things you think are important, until they’re not. We were talking about how to update the Doc McStuffins theme song. So, I did something I rarely do. I turned my phone off.

 

The meeting over, I took my phone out of my bag and turned it on. PLINK – PLINK – PLINK. The screen filled with texts. All from Lisa. I was about to look at them when Chris Hutchinson came around the corner. We started to chat, and as we did I glanced down and caught a few words: ‘Emergency’ ‘911’ ‘CALL ME RIGHT NOW’.

 

I called. Lisa was in a panic. I had to come home. Brian told her to get to the nearest ER. Now. I remember her telling me numbers. I didn’t have a faux medical degree yet, so I didn’t know what they meant. But what stuck out was 10,000 platelets. Normally 150,000 – 400,000. She was in danger of bleeding out.

 

Adrenaline is a hella strong drug. A ran for my car. I’m in deep Burbank. She’s in Venice. I started making phone calls. First Sara. Can she take Theo? Yes, but I have to call school. Called school – my voice must have made it clear that I was not kidding around. No hoops. They would release Theo to Sara without paperwork. Called Sascha. He knew the world of blood disorders. Trying to figure out what hospital to go to. Called Norma to realize she was in NYC. And I heard something in her voice that told me I was right. This was bad.

 

Somewhere in there I also texted Kerri to ask her to find out which hospitals are covered by our insurance. I don’t remember that text, but recently texted her and saw the whole exchange. Somewhere in my panic-brain my producer-brain was also working.

 

Picked up Lisa. For the first time I let myself see the color of her face. We’ve become obsessed with pictures of the weeks leading up to that day. What could we see. What should we have seen. We are all eagle-eyed for the first bruises. There! See there, on your arm? What did we think that bruise was from?

 

Now I look back at pictures from the few weeks before, and I see that she looks like a ghost. A vampire. Her face isn’t right. But I don’t see it in the hustle and bustle of real time.

 

I see it when I walk into the house. She’s packed a small bag. We both seem to know this is going to be bigger than all that. And we drive to St. Johns.

 

On the way in – going to park – I look at the car ahead of us and there’s… Audry? Heading in to be with her mother. But she later gives me her clothes to sleep in that night. And she feeds Lisa. And makes us laugh. Such a gift that bump in.

 

Lisa has called Sherrie Ross. The numbers made her put down her sandwich and walk to a nearby office to ask for a favor from a hematologist friend. He was waiting for us. The ER was waiting for us.

 

I was an EMT in high school. I know what it means when they’re waiting for you.

 

Here’s what happened in the first hour:

 

They took blood to double check the results.

 

They ask Lisa if she’s eaten. She has. They do not have time to wait. She needs a bone marrow biopsy – drilling into her bone to take out a core sample – and because she’s eaten they can’t give her anesthesia. She looks at them and says, ‘I can take it’. She could. She does.

 

A full team is down in her room and drilling within 45 minutes. I know how long you usually wait for a specialization team to come perform a procedure.

 

They had told us within an hour that she most likely has cancer. Leukemia. I remember that I couldn’t spell leukemia. I can’t spell. And I was texting with shaky hands. And I kept spelling it so badly that it wouldn’t autocorrect correctly. One friend responded, “Did you mean to write pneumonia?” She was trying to use the misspelling to believe it wasn’t what I was saying it was.

 

I remember emailing her sisters and saying one of them needed to start a text chain with all of us on it. And I remember telling them it was most likely leukemia. But I spelled it wrong.

 

Maybe I was wrong. Maybe they didn’t really say all that. So clearly. So quickly.

 

But within that hour I’d also been handed a notebook. A notebook on managing your cancer. It said it right on the cover. And it was spelled right. C A N C E R.

 

I don’t know where that booklet ended up. We never used it.

 

And within that hour a member of the clergy had come to the room.

 

And the billing person. They came to me. And they told me they were praying for us.

 

An orderly told me they were praying for Lisa.

 

And within that first hour Lisa was so strong. And clear: “I want to live.” Which she did.

 

Most of you know the rest of the story. That I didn’t really have to learn how to spell leukemia. But did have to learn what Aplastic Anemia was. And while it technically isn’t cancer, Lisa sees an oncologist, and is treated in the cancer center. Not being cancer is a technicality. We share our doctor with the leukemia and lymphoma patients.

 

A year later, Lisa is just returning from a week away at a writing retreat. Her first truly solo outing.

 

A year later, we all want to say, “Phew glad that year is over!” But this isn’t over. This journey is ongoing. Out of crisis mode, we become another family dealing with a chronic illness. Lisa is still shaking her head and trying to accept that this is her. We still go to the cancer center at least once a month and wonder what the outcome will be. Sometimes it’s better than others, but it’s never normal.

 

But we do have to wait to see the doctor. And that is comforting. Billing doesn’t come to us. Time moves slowly. And, while that can be inconvenient as we get back to life, I’m secretly thrilled every time we have to go up and ask how long this is going to be. Because when they forget you’re there, it’s a good day.

Blood is Thicker Than Water … Faster Too!

Hi everyone,

 

It’s been about two months since I sent y’all an update. But we saw Paquette today, and I’m trained to update everyone as soon as we’ve seen The Man.

 

The last two months: we went to Hawaii, which was fab, but did tire Lisa out when all was said and done. Maybe all the scuba diving, and the trip up the volcano to 12,000 feet above sea level weren’t the best ideas for someone without full oxygenation of her blood, but hey, we had fun. And Lisa’s desire to do everything is the same drive that will bring her through all of this. It was great to spend time away together:IMG_1393

Over all, when she isn’t sick, her energy is better than it has been since this craziness all started.

 

She has been sick a lot. By that I mean, and this is a big distinction, sick with illnesses that you and I would get, but not “aplastic anemia” sick. This distinction is something that Theo feels strongly about. He calls her blood illness a disorder, and colds and flues are her being sick. When I tell him that she’s not feeling well, he always stops to ask is she sick, or is she disordered. Of course, she wouldn’t be sick if she weren’t disordered, but these are the semantics we live in these days.

 

So yeah, she has continued to pick up every little bug going around. So far this winter she’s had the stomach flu 2x, a couple of bronchial viruses, staph infections and… well, you get the picture. For someone who used to never get sick, it’s a bummer.

 

The last month have also been heavy heavy with headaches/migraines. We don’t know if it’s related to her drugs.

 

And yes, the drugs. A lot of what’s bugging her now are side effects from the 10 cyclosporin pills she takes a day. She’s been dying to start to taper.

 

So… here we are. Brush up on your blood counts… We seem to have pretty much leveled off with a new top.

 

WBC 3.7 – up a tick

HgB 9.8 – down

Platelets 107k down from one higher spike, but basically this seems to be her new top. 150k is the low end of normal.

ANC – .8

 

While not normal, these are totally livable, and pretty great for someone with Severe Aplastic Anemia.

 

And… he’s finally ready to start the taper on her drugs. From 10 cyclosporin pills a day, she now gets to take… 9 (really, just 9?). Okay, 9. Yay! Still the taper won’t be fast.

 

Her blood pressure has been high, so she may have to go on something for that until we can get lower on the cyclosporin.

 

I know, that all sounds… like a lot… but we feel pretty good. Lisa always wants it to be a pure win. And we both thought her numbers would be higher… but that just means, when she isn’t sick (Theo sick) she’s feeling pretty good.

 

We will get another blood test in 6 weeks, and (hopefully) won’t see Paquette for another 3 months.

 

Paquette did use ‘remission’ a few times to describe Lisa right now. I think that for someone will SAA, these numbers, if they hold steady, are considered remission even if it isn’t normal. So that’s a big-assed thing to hear from him.

 

Let’s hope lowering the drugs doesn’t change anything.

 

Now, if we could only get the pool moving as quickly as her platelets we’d be good…image1

Soon! Hopefully, soon!!!

 

Next big adventure – we’re going to Iceland in August – checking off another place on our list. Someplace clean, with good healthcare, and a reliable blood supply. I might become a very nitch-y travel agent when I retire from Disney.

 

With lots of love—

 

Chris, Lisa and Theo

You build a pool, stupid. That’s what you do.

Well hi there everyone. Had to go try on my Aplastic Anemia jeans and see if they still fit. They do! I know you’re all complaining about the Monday morning of the time change – oy, is that hard! Try Time-Change Monday x Hospital-Change Monday, and the joys of exploring a brand new cancer center, and we’ll talk about how hard it is.

 

We got Theo up, dropping him off at John and Tina’s at the crack of early. Must say climbing those steps pre-breakfast is a little PTSD-y for me.

 

Off to Cedars to learn a whole new system. It definitely felt weird not to be with our peeps, and not to know the layout or procedures. But we’ll figure it out. All we need is Paquette.

 

Backing up – it’s been two months since we saw Paquette. It’s been radio silence for most of you, and I’ll say Lisa has been pretty much acting like there’s nothing wrong. That may or may not always be a good thing. I see she gets more tired at the end of her days, and has joint pains and hand and feet pain from the medications, but all small variances.

 

The big thing is that she’s been sick. A lot. As one of those people who rarely ever gets sick, and usually for a day or two is she does, this is definitely a moment of accepting a new normal. She gets sick often, and when she does she just can’t seem to shake it. We have to continue to be hyper-vigilant about her being exposed to illness.

 

She’s had a viral chest infection for a few weeks. Appears to be mostly past it now, but it was a big one. That illness is what we hope explains her blood results today.

 

Remember too that Lisa is on huge doses of very intense drugs. We’re anxious to bring her cyclosporine levels down, but that requires stable blood that has found its top level for her. Paquette wants Lisa to go as high as she can go before beginning to taper the medications and hope the numbers hold.

 

So… her blood was good, but not great. We saw slight downward trends, and nothing going back up.

 

Her platelets had been 109k 2 months ago, then 111k on 2/3 and they were 106k today. Now, context – that’s great for someone with AA. 150k is the low end of normal, but 106 is something she can live really normally with. That said, it’s a slight downward trend. At this point hard to say if it’s the illness suppressing her system, or if there’s anything more significant going on.

 

Also very possible we’re reaching her plateau. And if that is her new top – great. That’s a fine top. And once we know we’re topping out we can finally start to take her down off her medications.

 

Her hemoglobin is holding about steady at 11.1 – a little less than you have, anemic sure, but nothing huge.

 

The big drop-offs were white blood count.

 

Her White Blood Count went from 4.6 two months ago to 2.9

 

Her ANC went from 2.7 two months ago to 1.1

 

Again, this could all be explained by the illness.

 

Or… something could be going on. What? Not sure. Maybe PNH clones growing.

 

Also her reticulocyte count is down again. 50k two months ago. 30k today. That’s an indication of new baby blood cells. There are less of them.

 

So, definitely no medicine tapering. Which sucks, taking 12 pills a day ain’t fun, and the side effects aren’t easy.

 

We see Paquette again in two months.

 

And Lisa is going to have a blood draw in 10 days before he’ll okay us flying to Hawaii in two weeks. She may just have to fly in a mask, but okay. Then we’ll sit on a beach for a week. Because our family needs that.

 

By the way, try the filter for vacations that is: “How’s the health care and blood supply?” No Mexico for the time being.

 

I’m not terribly worried about the results. I think we may have found her top, and if it’s around here, we’re good. She’s good. If it’s the illnesses, we’re just seeing the body get hammered as it fights those viral invaders.

 

But it is a good reminder that the new normal isn’t actually normal. That said, we went for a hike yesterday for the first time since she got sick. We stopped 20 feet from the parking lot and stared at the spot I left her in the sun four months ago while Theo and I hiked. 4 months ago, that was as far as she could walk from the car. Yesterday we climbed up to the top of the mountain and hiked back on down again. And she felt great. That’s what matters. There’s blood results and life results, and at some point the life results matter more.

 

I know she’s a little bummed today that this isn’t just over. She’s gotten used to clean, clear, victories. But this isn’t a sprint, it’s a marathon. And she’s totally winning it.

 

A few pictures of us nesting. We fixed the bad flow of our front porch and, as many of you know, Lisa has always wanted a pool. When you survive a life threatening illness and you’ve always wanted a pool, you know what you do? You build a pool, stupid. That’s what you do.

 

The New Normal – A Post From the Patient, Lisa

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*this post is from Lisa
Hello all. 

Here’s the mantle of well wishes that cheered me on for so many weeks. I took the cards down on New Year’s Day, yet they continue to lift me up. Over the weekend, I read all of Chris emails. Feeling so strong now, I was ready to look back, and I did shed a bucket of tears. Wow, Mr. Toad’s Wild Ride. But Chris is one hell of a writer, and made our torturous time pretty compelling to read about. I’m so glad to have provided a happy(ish) ending to our story, though we know it’s far from over. 

On Friday, I visited the Ucla Hematology/Oncology Clinic, probably for the last time, as I’ll be seeing Dr. Paquette at Cedars Sinai starting in March. I always get nervous when I arrive at the Clinic, but this time my reason for going was to meet with the volunteer department. Yes, I’ll no longer be a patient, but there to help other patients through their toughest of times.
I felt dizzy and nauseous just being at UCLA, and my pals on the front line agreed with my wife/bouncer that I should get one last blood draw for peace of mind, for old times sake, and 15 bucks. It my first time getting the numbers without Chris, nor The Guy, but somewhere inside I knew that everything would be OK and I could handle it on my own. My BFF nurse, Priscilla, read the results –  11.2 Hemoglobin, 3.83 WBC, and… 111,000 platelets. Almost normal.
It’s not completely over, but look how far we’ve come. I feel great most of the time, and I take pride in my strength and meteoric rise. But you all continue to stand with me – Chris, Theo, my sisters, my mom, Chris’ parents and the rest of our family, and our totally amazing family of friends. You know who you are.

Thank you all for the love. We feel it. And we will keep you informed. But don’t expect to hear anything – ’til the end of March!

Lisa

Feel your blood! Feel your heart! Feel your life!

Well hello there,

There’s a lot I can say about the past month. A couple of illnesses (of the smaller ilk, but things she didn’t used to get), an infection on her face from the hot tub (yeah, everything you ever suspected about a hotel hot tub) and some joint pains from the cyclosporin…

But, none of that matters. All that does matter is that one Ronald J. Paquette (I have no idea if J is his middle name but it just sounds right) just pronounced that she was not an actively sick person anymore. He says she can ski. Or boogie board. Or fly. And he means it! That man has saved us. And so humble, he seems surprised we will follow him to Cedars. The Man. The Guy. Paquette. Thank you.
So, what kind of good news are we talking about? Well, I’m not a miracle person. I can’t honestly say the words, “This is a miracle.” But I can type, say and feel… this has been miraculous.
Lisa was sent to the ER on September 18th. We met Paquette for the first tim on September 20th. This is four months almost to the day. Four months and….
Platelets: 109,000 <—- 70k a month ago – above the contact sport threshold
White Blood Count: 4.59 <—— double a month ago
Hemoglobin: 11.00 <—– fucking 11 people!!!
ANC: 2.7 <—- that was .6 a month ago!
We did it! She did it! Kicking Aplastic Anemia’s ass all over Westwood.
It was hard saying goodbye to everyone at UCLA. Very emotional for Lisa. What an amazing group of people. The nurses… always the nurses.  Felt like a distinct end of a horrible, and terribly delineated, period in our lives. There’s no question, working an illness like this is a full contact sport (without touching anyone ’cause they might bleed to death). You have to work the system, find your allies, and push for your needs. We had it worked out at UCLA. It’s going to be a big thing switching to a new place, and as morbid as it sounds, we’ll never have been the one they weren’t sure was going to make it at Cedars. That bonds you with your staff. They take pride in watching someone like Lisa go from nothing, to life. At Cedars we’ll just be middle of the road blood-drawers. It’s okay. We’ll take it.
I’ll tell you one story about the past month.
On September 18th tickets to Patti Smith went on sale. She was doing the entire Horses album live. This is one of Lisa’s most seminal albums. Her most beloved artist. She was out of her mind to see it, and had set an alarm and sat at her computer as tickets went on sale. She got on right away, got amazing seats and pressed BUY. The site froze. The ball started spinning. While she sat and watched the phone rang. It was cousin Brian. He told her to get to the ER immediately. Something was horribly wrong with her blood.
Lisa left the ball spinning and our life changed completely.
The first thing I did when Lisa checked into the hospital was buy her a good paid of Bose headphones, and she disappeared into her music for the days she had treatments. Most especially, Patti Smith and Horses.
You know what’s coming next. Horse serum which is what ran through her veins as she went through four days of chemo. And still, Horses pulsing in her ears.
When she got out of the hospital, life seemed so bleak. She was just hanging on. Circling the drain. Then one day she went on StubHub and bought even better tickets (and way more expensive) to the Horses tour for January 8th. It was her goal to get there. I didn’t think there was any way under any circumstances that she would be going to a concert in January. She was determined, but had already figured out how I could drop her off, and she could sit in the lobby on her way to the seats. And she’d wear a mask if she needed to. But she was going.
You know where we were on January 8th:

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And Lisa wasn’t wearin’ no stinkin’ mask. Just a lot of life and joy:
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At one point Patti told everyone to put their hands in the air… and then she said:
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“Feel your blood! Feel your heart! Feel your life!”
And we did as the lady told us:
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We felt it. Our Blood. Our Heart. Our Life.
The ball isn’t spinning anymore.
Thanks for going on the journey with us. We love you guys all.
Chris, Lisa, Theo and Patti

 

15% Complete Responders

Hi there. Hello. Remember us? Yeah, it’s been two weeks. We tried that once before and didn’t make it, but this time a full two weeks have passed since we had a blood test. Lisa has been getting back to her normal self. Dinner party attended. Yoga attempted. Star Wars in a theater attained.

My position as her bouncer is tenuous.

But the last 48 hours she’s been feeling a little off. Headache and dizzy. Thing is, we’ve had enough time to see patterns, and truth is, she gets scared before blood draws. And this week was no different.

In we go. She’s worried something has dropped. I’m pretty sure it hasn’t, but it ain’t my body’s tea leaves we’re reading.

It’s the holidays. We bring cookies and wine because there’s no place better to grease the wheels than a place where they stick you with needles. And we wait for the laughter. Because Paquette is always heard first with a big burst of a guffaw someplace on the floor.

He walked in a little… low on energy. For him mind you. But boy, when you have a diagnosis like this, you become a friggin expert in body language. Lisa and I gave each other an ‘oh shit’ look. Something seems wrong. But we don’t know what. He does an exam. Then pulls back, picks up her results, and hands them to her saying, “Here’s my gift to you.”

Do you want me to stop now and remind you where we were? Or would that just be cruel?

No, you need context. Two weeks ago we were at 8.3 hemoglobin and 50k platelets.

Anythings else I can do to vamp? No?

Well, Happy Holidays everyone. We didn’t get to a holiday card, and there’s no gift in the mail. So instead, as Paquette would say, accept this as your gift:

70k platelets

9.6 hemoglobin

ANC still pretty low.

It’s perfect right? And yes, it makes your ass look great!

Paquette lets go one of his laughs and tells us, “You’re going to be one of the 15% complete responders.” Yes please!  15% of people act like they’ve had a BMT when they’ve just had ATG. Lisa is on track for that.

We haven’t even hit three months since the treatment was completed. He reiterated this is as quickly as a turnaround like this could possibly happen. And I know from the other AA patients I’m interacting with that so many people are at 9 to 10 months waiting for something, anything to happen. And the other patient we know spent 18 moths getting to 50k. This is a miraculous turnaround.

Then he tells us his bad news. But on a scale of the shit we’ve been through, we’ll figure it out. He’s leaving UCLA. We’ll see him in a month (a month?!) one last time at UCLA and then he’s taken a job at Cedars. We’ll no doubt follow him there. By then we should be down to visits every three months. So, it’s a little further drive.

Caveats – this is one of those diseases, you just don’t know what’s going to happen. She’s still on a full loaf of cyclosporin and her blood pressure is high, and we’re watching the kidneys closely. And she’s at about 1/2 the blood stuff that you have.

But really, I think we’re past the worst of all of this, at least for now. Lisa can pick up the slack as far as I’m concerned.

My parents are here through Christmas. We are so happy to have them around to celebrate with us.

We have two weeks of holiday to relax, and take in all that’s happened. What a year it has been.

We’re going down to Palm Spring for three days of cocktails (me) and hot tubs (her). Life is good. And we are grateful.

Expect love and sappiness in a special New Year’s update, but for now we have a life to get back to thank you very much.

This is how we’re feeling today:

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Check the color on her face. Yes, it’s golden hour, but still:
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That’s what we got. And it’s a lot. She’s gonna beat this thing like a champ.
Much love,
Chris

 

A Statistic of One

“But, that’s too high!”

That’s what we heard The Guy say from the hallway as he was getting our blood results before coming in to talk to us. That’s too high. And I thought to myself, can he be talking about us? And is ‘too high’ good? Or bad?

And Lisa was thinking to herself, was he talking about us? Good? Bad?

Then he bounced in, as he has a want to do, all coy and happy, and whatever was too high seemed like maybe it was good.

And oh boy was it good.

So, a rewind. In the past two weeks Lisa’s platelets had continued to surge upwards, while her hemoglobin has lagged behind. During the 2 weeks we were supposed to be sans Doc-time, her nose bled and we went in for blood tests. Her platelets were 33k and her hemoglobin had dropped to 6.9, very low.

All of which begged the age old question, ‘what up, hemoglobins?’

So today Paquette walks in and asks confused, “Did you get a transfusion last week?” Yeah, we totally got a back alley transfusion on the Venice boardwalk. Bad idea? No! No transfusion. “You sure?” “Yes, we’re sure!”

“Then this is big!”

And he lays it on us.

Her hemoglobin is 8.3! Waaaa? From 6.9 on Thursday?

And… her platelets are 50k! The magic 50k! She can have surgery! She can drink alcohol (which we shall do tonight!). She can engage in somewhat risky behavior!

The Guy said that this was the trajectory her reticulocyte count had indicated, but the last two weeks had been so strange. “Well, you know she had the stomach flu, right?” THE STOMACH FLU! That explains it! That’s what happened with her red blood when everything else was pointing towards a meteoric rise!

So, I keep mentioning that pesky PNH. It is very complicated, and there’s no question she has a small population of it.  Most AA patients don’t have it, but some do. It’s a whole other syndrome. She has about a 5% population of it. It’s a biiiig deal if it grows and hits 50%, but at 5% her body can deal with it. And the very stupid layman way of saying this is PNH clones eat red blood cells. And their fear looking at the numbers not knowing she was getting sick was that the PNH cluster had grown, and although the reticulocyte count was showing baby red blood cells, they were getting eaten before they could grow… like a bad post-apocalyptic game of hemotologic Pacman.

What they now think has been happening over the past few weeks is that she was getting sick, got sick, and was getting over being sick. And while her other blood parts were being distracted by the stomach flu, the PNH fuckers were sneaking in a eating the red blood cells. (If I were giving notes to this disease I would really be recommending a simplification of the storyline). Anyway, now that the body is getting stronger the PNH clones are back in check.

It is all in indication that for a long time to come, like forever, Lisa will need to be more careful than the average bear about getting sick. She should never be around sick people, and should always be a handwasher. Because on top of getting sick more easily, and having a harder time getting well, sick is a Trojan horse for those PNH clones to get in there and chow down.

Blah blah, her numbers are remarkable! In less than 3 months, she’s having an incredible turnaround.

A few weeks ago when I was talking statistics with Dr. Josh, we were reminded that 40% of people relapse from ATG. But then he looked at us with his Baby Blues (Lisa referred to him as Grey’s Anatomy to Paquette today, and he looked puzzled for a half a second before saying “Josh?” and if he sees it, you know it’s cute), anyway Dr. Josh said, “But you’re a statistic of one!”

True ‘dat. Good overall life lesson really. We’re all a statistic of one.

And in that conversation he’d said that one thing he did know is that people whose numbers rose slowly, or never made it back to the full amount, were more likely to relapse, but the patients he’d seen who really had pretty much full recoveries were the ones who just shot like a rocket all the way up.

Lisa in on that trajectory. So let’s all cheer her on! Go baby go!

The caveats: Not much today except to remind you that she had 50k platelets instead of 150k. I’m not sure about the adult scooter she wants for Christmas. I’m not even joking.

At 8.3 hemoglobin she’s above the transfusion level for the first time in over a month, but if YOU had 8.3 you’d be severely anemic and all bitching and complaining and using it as an excuse to bow out of every holiday party you didn’t really want to go to in the first place.

She still needs to be careful. She will tire easily. We can see in the last two weeks that when her body is preoccupied bad things happen.

Enough of that. I had a great trip to NYC, where I met Robin Roberts, the host of Good Morning America who had a Bone Marrow Transplant when she had bone marrow failure. She was amazing, and such an inspiration for how far back Lisa can come. It was also nice to have a break, and to see so many of my closest family and friends.

Huge thanks to everyone here for holding down the fort with Lisa and Theo.

Now, go buy a bottle of Scrumpy (or any other hard cider), which is Lisa’s favorite drink and raise a glass tonight. Because for the first time in a long time, I won’t be drinking alone (wait that didn’t sound right).

So much love and thanks for all of you on this long march back to health!!

Chris

Sick on Sick

It’s been a slightly more eventful week and a half than we’d hoped, and yes I’m updating early… you lucky ducks! You need numbers? I got numbers. So settle in ‘cause here we go.

We last saw Paquette two weeks ago this coming Monday. Lisa’s platelets were on the rise, although the hemoglobin was tagging along behind. He pulled her pic line, and sent us on our way.

Lisa’s Mom came for Thanksgiving. We knew she needed to see Lisa, and hoped we’d waited long enough that she would appear on the road to recovery. At first we succeeded.  Lisa was puttering around and seemed pretty un-sick-ish. We had Thanksgiving dinner cooked by Whole Foods. They do a fine spread all things considered. If you ever find yourself needing to celebrate a cooking holiday during a bone marrow failure crisis, I highly recommend. All was good.

Then, Lisa got sick. Fever. Puking. She was convinced that it was eating a bag of dried apricots, but the fever quickly told us otherwise. She had the flu. Stomach flu. And she had no immune system, so we had no idea what to expect.

Sick on Sick. That’s what I call it. Flu on AA. But Theo doesn’t like to call Lisa sick. It doesn’t jive with what he sees most days. He thinks of ‘sick’ as something you get that you can get rid of, and she has something that’s not working. So he calls this her disorder. He doesn’t care that my nice title is messed up with Sick on Disorder.

Anyway, we knew Lisa was susceptible. And somehow Boy in the Bubble be damned, she picked something up. So Lisa’s Mom’s last day was the start of that illness, so it really freaked her out. There wasn’t enough lipstick to make that pig look healthy.

Then, Lisa’s body got to it, and she pulled out of the nosedive. She managed to get herself healthy again. Just in time… for Theo to get the bug. Yay! I wasn’t home so Lisa being a mom first shed the bubble and dealt with Theo’s vomit, and we wait to see it the cycle will repeat.

Finally last night Theo seemed on the mend. Lisa seemed like she was getting past the stomach thing, which of course took her a way longer than it normally would have. All is good. Until she turns to me on the couch and her nose is bleeding. Bloody hell. Literally.

I can’t tell you that we took it in stride. We did not. It really threw Lisa for a loop. She wasn’t bleeding a lot, but enough for us both to know her platelets had probably dropped. This is our first two weeks without blood draws so we don’t know where she is. But, my blood math should have put her at about 25k-30k based on the trajectory she was on.

Bleeding starts at 10k.

You do the blood math!

Fucking hell.

I totally understand Tom Cruise buying the sonogram machine. I’d cash in a fistful of my McDollars right now to own a blood math machine. I’d draw that blood all day long, jump on the couch and yell out the numbers. I so would.

At least everyone’s stopped puking!

So, now we’re in real time.

Today she goes for a drop-in blood draw. She’s really low emotionally. And we expect her to be low plateletally.

We just got the call from Paquette that her platelets are actually up – 33k. That’s great! That’s huge!

But, her hemoglobin is 6.9 – down from 7.3.

Low. Very low. Still he seems happy with these numbers. He tells us we have to be patient. Easy to say when you haven’t been under the hemoglobin transfusion level for over a month.  Which, by the way, I haven’t either. Just, hard to walk through life like this. Going up the stairs one flight leaves her winded.

But, we will do our best to listen to him. And not get discouraged. It’s hard.

I gave Lisa three of her Hanukkah presents today

Lisa and Theo with her new plush red blood cell…

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Her plush red blood cell, platelets and white blood cells all made to spec… god bless the internet:

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By the way, in case anyone was just sitting around wondering how much 4 bags of horse serum costs, wonder no more – $140,000. I could have just bought her the fucking horse.

You know bunny serum is like a grand, but they’re all like ‘horses! noble! galloping! majestic!’ and you’re all like horse-lady! And then you get a bill for 140k. Actually you get a bill for 192k because there are a few days of nursing and hospital food thrown in there.

Which means her bill is what her platelets should be. And her platelets are what I wish her bill would be.

And our stay at St. John’s was just denied because they never had the balls to make a diagnosis so they classified us as anemic. Like your Grandma’s anemic. But that should get worked out pretty easily.

So far our insurance has actually been amazing, and Paquette is a full provider, so that 192,000 bill? We owe 100 bucks. We hit a 1/4 of a million in less than two months, and owe less than 2 grand.

How do you do this without insurance?

In a supremely unlucky situation we have been nothing but lucky-lucky-lucky.

So, that’s what I’ve got. Oh, except that I’m leaving for NYC in the morning. I have to go for work. All of you folks who are on call for the weekend, know that her red blood is so low. The less driving and doing the better.

I really thought this whole health thing was going to be fun, but it’s not turning out that way.

So, I’ll be back Tuesday. Wednesday we see Paquette. If Lisa keeps dropping, she’ll need red blood.

And so it goes.

Love you guys. A reminder she was on the Thanksgiving update of gratitude, but not this pile o’ sour grapes (I jest. We’re holding onto as much gratitude as we can.) Send her your love, but don’t forward her the update. Her choice not mine. The takeaway? We don’t quite know what to think, but as always, Paquette makes up feel better.

Imagine Lisa with more of these:

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Much love,

Chris

Not Every Hit is a Home Run

Hi you guys!  It’s been a week. Have you missed us?

I’m going to forego the chitchat.

We’ve gotten a little too used to the homeruns, so our line drive single just doesn’t seem that special. But it is. It’s part of the chipping away that wins you the game. Okay, that’s as far as I can go with a sports metaphor.

We had a little bit less exciting appointment today.

Today, platelets are up again reaching the grand heights of 24k platelets, all home grown. As Paquette said, “A relatively safe way to be in the world.” Which, you know, doesn’t sound that enthusiastic, but we’ll take it.

So that was the good news. Middling news was that her hemoglobin didn’t really move, technically it ticked down to 7.3 from 7.4 last week, although that’s all in the realm of testing abnormalities. But, her red blood definitely didn’t go up.

Her White Blood Count went down to 2.57

And her ANC went way down below neutropenic levels again to .4

Her reticulocyte count is .10 which is a big up. But in some ways that starts to make them have to ask the question, what’s happening with those baby red blood cells after they are being made?

So, no question this was a confusing panel, and even more than reading the numbers, we read the room. Paquette was definitely puzzled, and maybe a little worried. He is as always optimistic, and said this is still looking good. But that it’s early.  Still a definite change in tone from last week, which Lisa is very susceptible to.

There were two new numbers of note that were up and raised eyebrows. (Do you think the numbers are all just hoping and praying that one day they’ll make the update as a number of note?) One is her Bilirubin count and the other is her LDH count. I’m not going to get into them, but they are keeping their eye on the possible complication that her red blood cells are now breaking down after being made. She did have one PNH clone at the outset of all of this. We will test for that again next time. The PNH complication is so complicated, I’m not going to go into it, but that’s really what it is – a complication. One that can be dealt with.  Until we really start to think that’s happening, I’m not going to even begin to try to explain it.

What does all this mean? Mainly that it’s still really early. And this is not a diagnosis that just resolves itself cleanly. What we want is an overall upward trend, but individually any week could be a back step or two. It was a good appointment. No transfusions. And we won’t go back now for two whole weeks! Yay!

And as promised, this is Doctor Paquette. The Mom told us that first week, “This guy is going to save your life.” I concur. Take a moment, and say thank you to The Guy:

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And yes Lisa and I are in our matching vests. It is so friggin’ cold in there!

In terms of her day to day, we have been getting pretty lax, but it’s the start of flu and cold season, so please – her immune system is back way down. Let’s really be aware of hand washing, and of illness right now. If you or your family aren’t feeling well, please stay away.

She’s now been under 8.0 hemoglobin for a few weeks. That is below the automatic transfusion level. That’s below the full oxygenation level. In fact, her nurses keep ordering her blood when the results come back, and she has to go back and say she’s not taking it. And they argue it. And superwoman Lisa stands her ground. But, she is low energy. She seems fine sitting and talking, and then you walk around the block and see her barely getting to the end and you know her oxygenation just isn’t right.

So, going back for the recap of the week. (I know, this is where you all tune out…bzzzzzzzz) (Or maybe this is where you tune in and the numbers are where you… bzzzzzzz)

This week has been a lot of up and down. Lisa feels good, does too much, then crashes. Rinse and repeat.

We went out to a restaurant for the first time, which did feel like our real life. Theo took a picture of us:

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Lisa went to two school events, and we had another hiking day where we walked her to the middle of the field at Will Rogers (which totally winds her) plopped her down in the sun, and did an hour hike before coming back to get her. I’ll admit that when I saw an ambulance leaving the field on our way down, my heart only skipped about 9 beats. That’s all. But it wasn’t her.

Theo has been really clingy again. With me. And as a 9 year old boy that translates to a lot of bugging and poking, feet in the face, fingers held inches from your nose in a perpetually cocked ‘flick’ motion, nerf gun drive bys and wrestling matches. I’d hit a moment of maximum Zen-loss over the weekend. Lisa turned and asked him, “T, why are you bugging Mom so much?”  Without missing a beat he responds, “Because I can’t bug you.” Silence. He wins.  And I accept his rolled up socks under my nose yet again. Because I’m the one he can bug. Poor guy.

What, me bug?

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Lisa’s Mom comes into town tomorrow night to spend Thanksgiving with us.  We can’t wait to celebrate a holiday on which we have much to be Thankful for.

This was a good day. Because it wasn’t a bad day.

Love you all –

Chris