Pray for Adam

Hey y'all, Charlotte here!

Thank you so much for your emails & texts & prayers - I went a little crazy last week but I am feeling so much better. So is Maisie. This lakehouse is wonderful, and I've sent the owners about a million cards and emails thanking them for allowing us to use it. We've spent our days baking cookies and brownies, enjoying Mom's amazing cooking, giving each other manicures and pedicures, playing Animal Crossing and Sports Resort on the old Wii, playing tag and hide-and-seek and board games and doing puzzles and making crafts...it's just been awesome. We're planning on staying here as long as two weeks, and Kaitlynn's mom Norah has gotten her school to let her off the hook in terms of attendance and assignments. She's doing a little bit online, but mostly she's just relaxing with the rest of us.

The hope was for none of us to have to set foot in a hospital or doctor's office for the next two weeks at least, but of course it didn't work that way. I got a call from Dr. Phillips, the GP at her main hospital, who asked that Maisie check into a nearby hospital for a night to have some blood work and an MRI done. While we were there she had two hours to herself and we decided to go to the maternity ward and look at the babies. Not all hospitals allow this but thankfully this one did. While we were there we met a woman named Anna whose son Adam is clinging to life.

He was born at 19 weeks, four inches long and weighing 4 ounces. He had to be birthed by emergency c-section because he developed a tumor around his teeny neck and it would have killed him.

As it is, he might die anyway. He's now 3 weeks old (which is like 22 weeks gestation), six inches long, and weighs 10 ounces. As you may or may not know, babies born at under twenty-six weeks gestation are not typically considered viable, which makes Adam a miracle. The doctors wanted to let Anna and her husband George take Adam home to die, but she refused to let them abandon her son. She fought and argued until they launched into action, using every means available to save his tiny life.

He breathes with a CPAP machine and every ten minutes his heart skips a few beats. He's purple from head to toe and has tubes poking out every which way. Three times already his doctors have told his mother that he has hours to live. And every time, he's pulled through.

Please everyone, pray for Adam. He needs all the support he can get.

And on that note, Right now the one thing I'm thankful for more than anything is my daughter's life. I'm thankful for my amazingly strong mother who has stuck with me and Maisie through it all, I'm thankful that I survived, but mostly, I'm thankful that Maisie survived. She had about as much of a chance as Adam does, and she made it. I think he can too.

Happy Thanksgiving! Pray for Adam!

In the clear!

No more tumors!

Yay! 

We just got the test results back from the second scan after Maisie's second surgery, and she has no more tumors!

The oncologist, Dr. Nitari, is insisting that Maisie stay in the hospital a few more days. Kaitlynn's still with her, and while we wait she's going to be on dialysis constantly. When she's released me, Maisie, Kaitlynn, and her mom will drive up to Montauk to be with Charlotte and Jeff. I talked to them yesterday and Charlotte is feeling much better but she misses her Maisie.

Miranda will be there soon too. She has a week off for Thanksgiving, and we're thinking we'll spend a quiet holiday at the lakehouse.

Hopefully nothing medically significant will happen for the next, say, two weeks? We'll see.

:) Happy Thanksgiving!!!

Quick little update!

Eleanor here. 

Charlotte isn't doing so well, she's very upset by this new development in Maisie's health. Jeff and Miranda asked around and got the keys to a friend of a friend's lakehouse in Montauk and took Charlotte up there against her will for the weekend (at least). She needs to be away from the hospital for a while. Unfortunately, for the moment, that also means being away from Maisie while we get the rest of the tumors taken out. If, after the second surgery, the next couple scans come back negative we may be able to take Maisie up there too in a couple of days. For now it's just me and Maisie and Greg.

Maisie's going back into surgery tomorrow morning, and after that the doctors are insisting she stay in the hospital for at least a week under observation. Kaitlynn and her mom are going to stay a few weeks to be with Maisie. Kaitlynn's going to help her while away the time in the hospital. They are such a perfect match. Poor Kaitlynn had her childhood ripped out from under her when she was three, so hanging out with Maisie lets her be a little girl again. Maisie gets to see a success story, a girl who is getting stronger and stronger every day. I think that gives her hope.

We could all use a little more hope right now.

Flirting with Death: The Backstory

I just got a panicked email from a friend who read the phrase "both girls were flirting with death." So for the benefit of anyone who didn't hear about this, here it is:

We all know that Maisie had tetanus as a baby, but we thought it had been eradicated completely from her system by her first birthday. Well, the last time Maisie saw Kaitlynn it was in May, when Maisie started exhibiting symptoms again. We're not really sure if the bacteria had been reintroduced or if it had been dormant for two years, but either way this  time it really did a number on her system. As a baby she responded really well to the drugs they gave her but this time after a few days she started a downward spiral. The IDS (infectious disease specialist) prescribed one antibiotic after another. He was confident he'd find something that worked eventually, but in the meantime s just got worse and worse. It was awful to watch. She could not swallow or breathe or even turn her head by herself. She was on oxygen 24/7 and sometimes even that wasn't enough. It was scary shit. Eventually her jaw locked shut and she had to have a feeding tube put back in. But long before then, she had lost the will to eat. She had no appetite. She lost twenty pounds. Finally, the doctors told us there was not much hope. 

Kaitlynn was in a similar state. She had stopped responding to the chemotherapy. Despite the fact that Maisie was 3 and Kaitlynn was 8, they could almost have passed for twins. Zombie twins. She's really short for her age because of the cancer, but she just looked diminutive. The very definition of "wasting away." I can't describe how scary it was to see these girls, my girls, looking like this. They really were like a pair of skeletons. Then, something amazing happened.

The IDS prescribed a massive dose of metronidazole AND clindamycin. Both medicines had been tried before individually, but the risks associated with taking them together and taking so much of them was such that he would not have tried this until she was at the brink of death. Well, she was flirting with death, alright. It took a long time (she was first admitted to the hospital in March and wasn't released until May) but by the last week of April she was herself again. 

Unfortunately, it wasn't so simple for Kaitlynn. The oncologist who was treating her gave up and gave her another month to live. So her parents had her airlifted to a hospital in Boston, where they had a little more hope. By the end of the summer, both girls were happy and (sort of) healthy again.

Miracle. 

Results are in...

It's not cancerous.

But there are three more.

Miranda came by, she brought cookies from the Eleni's Cookies to make us all feel better but I can't stop reciting this stupid list: gastroenterological dysfunction, 1.5 living lungs, tetanus, kidney failure, tumors. What's next? What other organ will fail? Miranda took me out to lunch earlier while Mom and Dad stayed with Maisie. She thought it would be relaxing but it wasn't: there was a little girl there who looked just like Maisie. But healthy. Robust in a way I can't describe, whole a way I know my child will never be. And I can't help but feel totally guilty. I can't help but wonder if I had married someone other than Ricky if none of this would  have happened - if I hadn't been attacked with Maisie in my womb if she would be healthy, happy, robust, whole. I feel sick, angry. I lost my mind in the restaurant a little, I started crying and yelling at that little girl that it wasn't my choice for my daughter to be so sick. Miranda had to drag me out. I want to cry. I think I will.

Waiting...

Well, the surgery's over and the tumor is being sent off for analysis. They finished around 3:00 yesterday afternoon and Maisie's pretty much been sedated or asleep since then. She should wake up in a few hours and when she does she'll have a happy surprise - Kaitlynn is here! Apparently she was up in Boston for some experimental treatment test something or other and decided to just stay there for her next round of chemotherapy.

Well, she finished her chemo a week or so ago (ironically on the same day Maisie got this bugger) and is taking the scenic route home to Baltimore - and by scenic I mean the Maisie route. They've missed each other (in case you missed it, Kaitlynn is an nine-year-old bone cancer patient who Maisie met when she was two and the tetanus went wacko and we went to Hospital #2 for treatment. They bonded instantly and if I didn't know better I would have said they were separated at birth. Unfortunately, Kaitlynn relapsed badly and had to go to a specialer specialist in a different hospital several states away while Maisie was still in New York.)

I know that seeing her old friend will brighten Maisie's spirits considerably. Kaitlynn looks good, too, way better than she did last time Maisie saw her; when both girls were flirting with death they were pretty scary sights - gaunt, green-skinned, sunken eyes, scary-skinny. I think Kaitlynn is finally on the path to recovery. She's gained weight and doesn't look so frail and sunken anymore. Her eyes are bright and alert, her hair is shiny and thick again. I can't wait for Maisie to see her.

Never a dull day around here....

Something always has to happen. There's never a dull day around the Geraldo household...here's the latest.

Three days ago Maisie was complaining of a stomachache. This is coming from a four-year-old who once woke up during emergency surgery on her stomach/feeding tube and said her pain was a 2. Out of 10. She does not complain. Something was seriously wrong. For two days I listened to her cry, made her soup, hugged her, let her watch TV all day. I knew she was in some serious pain, but all four of us had been home and out of the hospital at the same time for almost four weeks. I didn't want to break the record. Then, yesterday around lunchtime, she spiked a fever. She was so hot I actually wanted a thermometer but discovered we don't actually own one. Jeff was an angel and went to the store to buy one while I held ice packs to the girl's forehead. It was quite an adventure, he says. It was 9 at night and CVS was closing but he chased the manager down and explained his situation, got the guy to open the door for five minutes. The thermometer announced 105.6 degrees. We called 911 and ten minutes later found ourselves back in the ER. 

Here's the lowdown: On top of gastroenterological dysfunction, a dead half a lung, kidney failure...my baby has a tumor in her belly. Well, shit.

Based on the location and the rapid development (it wasn't there in last month's CT scan) oncologist Dr. Nitari is fairly certain the tumor is cancerous (fuck). Even if it's not, she's eager to get that thing out as quickly as possible. Maisie's internals are so compromised already that any further damage could VERY quickly be fatal. Emergency surgery is scheduled for the 18th. Unfortunately it can't be any sooner than that because of the prep work she'll need. Right now, we're trying to keep Maisie comfortable and at a normal temperature. She's now at 101.8° and going down. The narcotics are keeping her pain mostly at bay, but it's three in the morning and she's woken up a dozen times crying from the pain. Poor baby. Hopefully this chapter will be closed after surgery and a few days in the hospital.

I shouldn't be surprised. This kind of thing happens a lot in kids like Maisie, kids with a compromised internal systems. Basically anytime something is not going exactly the way it should, you're way more at risk for something like cancer to weasel it's way in.

The Great Lung Discovery of Two Years Ago

I just realized that y'all didn't hear about the Great Lung Discovery of January Two Years Ago. So let's chat about that.

As you know Maisie has 70% kidney function. Actually, a lot of her organs are like that, not functioning at full potential. For instance, she has to be pretty careful about what she eats because her pancreas only functions at 80%. So the sweets and stuff, she has to be cautious about. She is by no means diabetic, but we just have to keep an eye on her blood sugar. Also, when she was first born, Maisie had a lot of trouble breathing. In fact, for the first year or so of her life she was on oxygen most of the time. This was because her tiny little lungs were underdeveloped. Eventually they came into their own and starting working pretty well.

Well. The January Maisie was eighteen months old, Maisie fell down the stairs. The next day she turned yellow and started vomiting like nobody's business. We rushed her to the hospital and they found that the weak spot in her stomach had torn when she got fell down the stairs and gastric acid was leaking onto her liver, thus the yellow. The amazing gastroenterologist Dr. Heffern sewed up her stomach with some surgical mesh, cleaned up her liver and coaxed it into back into working order. While Maisie was healing from all that, she somehow managed to get a cold, which as we all know is not a good thing when you're Maisie. So the poor girl was struggling to breathe and had to get the ear, nose, and throat doctor, as well as the pulmonologist, involved so she could breathe again. But even when her breathing was clear and she reported that she felt normal, they realized that her blood oxygen levels were kind of low. And so they did some digging and discovered that the lower half of her right lung is dead. Just dead. Doesn't do shinola. The crazy part is, we have no idea how long it's been like that. It might have died in the womb. It might have died when she was an infant. We don't know. But it's not really a big deal. She can breathe just fine, except when she gets a cold or something else restricts her lung capacity. Then we have an issue.

So yeah. The Great Lung Discovery.

Yes, we laugh. And this is why.

Charlotte again!

I have one more thing to say before I turn in for the night.

Something really irritating happened the other day, and I want to share it with all of you.

Just to review, Maisie is a bright, happy four-year-old, and as healthy as we could hope for. She has a lot of health issues. Way more than I do. But she's happy. And so I'm happy. And Grandma and Grandpa and Jeff are happy. Two days ago I posted a photo of Maisie and me in the hospital. In the photo she's hooked up to a dialysis machine. A little backstory: Maisie has a really shit immune system. She gets very sick very easily. A couple of days ago a girl in her preschool class came down with pneumonia. I flipped out. Grandma flipped out. The doctors insisted she stay in the hospital over the weekend to get blood work done, find out whether or not she's carrying the bacteria (it's bacterial pneumonia), and try to stop it before it kills her if she is carrying it. Well, Maisie also has really bad kidneys. She's got about 20% function out of the right one and maybe 50% function out of the other one. It's enough to live on until/if she gets a kidney transplant. But whenever she's in the hospital anyway, we hook her up to dialysis to give her poor kidneys a break.

So I'm sitting there reading a book out loud, the dialysis machine (which we call Wilhelm, because Maisie said so) is chugging away in the background and all of a sudden Maisie cracks up.

"What?" I say.

"The tubes look like a smiley face!"

So I come over and she tries to tell me how the arrangement of the bandages and tubes and stuff in her arm looks like a smiley face. I don't see it but she is so eager and it's so funny, neither of us can stop laughing. A second later a nurse walks in and takes a photo of us cracking up at her dialysis tubing. I posted it on Facebook. A friend of my mom's, who knows Maisie's deal, calls me the next day and goes on a tirade. "Your daughter is terminally ill (no, she's not) and has suffered more in her life than any four-year-old should (okay, yes). How can you laugh at her pain, laugh at her dialysis? You cannot comprehend how much she is hurting right now, and laughing at her situation is cruel." This went on for fifteen, twenty minutes. I'm not kidding. Eventually I just hung up the phone.

You want to know how I can laugh? You're right. Maisie is four years old and has suffered way more than any little kid should. But that's why I laugh. That's why she laughs. If we didn't, we'd go crazy! I laugh because she was born almost three months early with only a 50% chance of survival and holes in all sorts of internal organs. She could not breathe by herself for almost a whole year. She could not eat by herself for two years. She did not learn to walk until last year and today runs and jumps and skips and swings. She has 70% of a functional kidney and half an immune system and half of her left lung is dead and yet she goes to a mainstream preschool with twelve other kids. Her skin is half as thick as it should be and her eyesight is bad. She's had hemorrhaging and pain like you wouldn't believe. When she was thirteen months old she lost six of her eighteen pounds - A THIRD of her bodyweight - in a week. Five times she's turned blue on me from head to toe.

I don't know if my daughter will live to be five. Or six. Or seven. Her health problems are the result of a maniac interrupting her gestation, so we have no idea what the results are going to be in the long run. So I laugh to make the most of the time I have with her, even if it is not as much as I want. You would too.

Howdy from Charlotte!

Howdy, y'all!

God I wish I was from the south!

Charlotte here, I am SO EXCITED to start posting! I've been dying to talk about Maisie the Great ever since Ma started this blog in August.

I have some stuff to post about, to get you up to date. First, Maisie has two major health issues that are pretty constant:

1) Her immune system is pretty shit. It doesn't work. Really at all (okay that's not true because if it were she'd be in a bubble. And she's not. But it's really weak.) So she gets sick super easily and has a pretty constant, fairy bad, really pathetic cold that we refer to as "those sniffles."

2) Her left kidney functions at 50%. Her right kidney functions at 20%. This is because the neural connections between her brain and her kidneys are weak, and they don't "communicate" as fast as a healthy person's do. So whenever she's in the hospital for some other reason, we slap the dialysis machine (which we call Wilhelm because Maisie said to) on her to give those poor kidneys a break. Hopefully she'll get a transplant soon, but who knows? She can survive - even thrive - just like this.

She often has stomach/digestive/gastroenterological issues, also, but those are varying and not as constant and reliable as those two above.

As you'll see, she encounters a lot of problems over the course of her daily life. But she's a fighter. And she's strong. And she will never, ever give up. I love her to bits. She's the best.

Oh, and I'm pretty much fine. I have some scarring and some motor skill issues with my left hand, but other than that I have almost no residual effects from the attack. Physical or psychological.

What else has been happening? Oh yeah! Kaitlynn! So two years ago, Maisie's tetanus resurfaced and she had to be hospitalized for a couple of months. She was put in the same ward as this girl Kaitlynn, who was seven at the time. She's been fighting bone cancer since she was five years old. Despite their age difference, Maisie and Kaitlynn hit it off like nobody's business. They've both spent most of their lives in the hospital, and I think because of that they just understand each other better than "normal" people understand them. They spent those two weeks coloring and watching movies and laughing. If I didn't know better, I'd think they were long-lost sisters. They call each other like every day and talk and just have a ball. The connection there is just mind blowing. The only problem is that Kaitlynn lives in Baltimore, Maryland and her doctors are there. She's rarely in New York, but sometimes she and her mom make a trip up here, or we go up there, just so the girls can see each other.

Finally, about a year ago, I started seeing this amazing guy Jeff. I met him at a coffee shop one day. Maisie had been feeling really ill so we were in the hospital doing dialysis for a week or so, trying to get her to stabilize. One day we took a break and went to get hot chocolate and doughnuts, and we ended up sitting near Jeff. Maisie said something about his beard and they started talking, and then we started talking. The amazing thing about Jeff is that when he met us, Maisie was about fifteen pounds underweight, her skin was this gross yellow, and she had dialysis tubing sticking out of her arm. She looked a mess. And he wasn't afraid or grossed out or freaked out or anything. He chatted with her just like she was a regular little kid. He's great.

Okay, now I'm going to bed. Night night!

The blog got a makeover!

Hello, everybody!

Well, this retroactive posting proved to be way too confusing for Google Blogger, so we moved all the posts from 2009 to pages (see above) and will now be posting current stuff while at the same time updating the past few years.

Maisie just turned four a few months ago. Overall she's doing really well, but she's still got some health issues. She probably will for the rest of her life.

Right now, we don't know how long she'll live, or how healthy she'll grow to be. She could live into her nineties. She could die before she turns six. It's brutal to write about, but I want to put that possibility out there. It seems like every few weeks some fresh new problem crops up. As she's grown we've developed a better sense of how she's developing and how she was affected by the attack. Her coming into this world was more than a premature birth - it was such a violent end to the pregnancy that her birth was rather unique, and so also will her life be. She's an amazing kid, though. She's spent almost half her life in the hospital, but she wakes up with a smile on her face. She has no anger, no fear.

She is awesome.