Dialysis

I've been meaning to do this for a while, but I keep forgetting.

A good friend of mine, S, has a daughter K who is on dialysis three times a week. She has almost no kidney function left and so her blood must be cleaned by a machine, always. She can't do it herself. I've posted a few things about Maisie's experiences with dialysis over the past few months, and a few weeks ago I got a call from S, who was outraged to hear how different Maisie's experiences with dialysis are from K's. I explained to her what I'm going to explain now, for all of you who have experience with dialysis and know how difficult it can be.

First of all, Maisie has 70% function in her kidneys (basically she can filter our 70% of the gunk in her blood on her own, while most people can filter out 100% of the gunk). Her kidneys can clean her blood on their own without help, but they are weak. They are easily exhausted. Sometimes when she gets sick she can't get better because her blood is not as clean as it should be. Whenever she is in the hospital long-term for some other reason, she is also on dialysis a lot.  Most kids with kidney failure go in three times a week for three to four hours. There have been stretches of time where we have done this with Maisie for various reasons, but it is exhausting. It's strenuous on the child and the family. I have heard S's horror stories and am filled with awe for those moms who take their child to the hospital for nine hours or more EVERY SINGLE WEEK. These kids have tubing in their arms constantly. They can't take showers or swim. Changing the bandage is a nightmare because the environment must be completely sterile. Without dialysis, these children will die.

This is not the case with Maisie. She is in a unique situation where she is capable of cleaning her own blood, but it is unusually taxing for her. Whenever her body is compromised by illness or something else, it is often helpful for her to be on dialysis for 24 hours. We find that a full day of cleaning once in a while works better for her and for our family than coming in every week did. It was too much pain for Maisie when she could survive pretty well without it.

I also know that most hospitals don't have enough dialysis machines to allow one child to use it for twenty-four hours periods. I'm sorry for that. The only thing I can say about that is we go to a small, private hospital with enough machines to allow Maisie one for twenty-four hours. It's that simple. If she were taking it away from a child who needed to survive, I would never allow her to use it for so long. Rest assured that I have checked many times that no one else needs her machine more urgently. And several times the machine has been taken away because someone else needs it. And that's fine. They need it more.

Potty Training

Can't sleep, so I thought I'd talk about our experience potty-training Maisie. I remember vividly my own potty-training experience, which is probably not good. It was traumatizing. I was almost two when my mom, pressured by her friends whose children were already potty-trained, decided she had to buckle down and do it. But I wasn't ready. I couldn't control my bowels. I just could not do it. I was so frustrated. I felt like a failure. I was two. It was awful. I have, as you can imagine, very defiant beliefs about potty-training. When your kid is ready, it will happen. When he's not, don't bother trying. So I planned to wait however long it took for Maisie to be ready, be it two years or even five.

A few months before her third birthday, a dear family friend of ours was getting married. This was a girl two years younger than me who I grew up next door to along with her two sisters. When she got married, I was asked to be a bridesmaid. I was delighted. Two weeks before the wedding we flew out to Colorado to help her get last-minute things ready. Well, it so happened that her older sister had a two-year-old girl who was potty training. Maisie was fascinated by her plastic potty (we didn't have one) and how she used it. She decided after three days that she wanted a potty to use. She was very excited. My dear friends were happy to let Maisie potty train then and there. Unfortunately, it didn't work. Maisie could not seem to do it. She would announce she had to go to the bathroom, rush to the potty, get her pull-up and everything off, plop down on the potty, sit for like ten minutes, and then finally say "Never mind," and get up. The moment her pull-up was in place she'd pee and burst into tears. "Didn't do potty! Didn't do potty!" She was so upset, it was awful. She was mentally ready. She wanted to use the potty, but somehow she couldn't.

Well, we convinced her to give it up until we got home. But it was no better there. Finally we decided to take her to the pediatrician, afraid that this was a sign of some new health issue. Thankfully, the doctor found nothing. Nothing in her blood or urine or even in the MRI we had done a month later (for another reason but they checked it for any urinary/digestive obstructions anyway). We were relieved. And a month later, Maisie ran into the living room shouting, "Mama! I did it!"

The front of her pants was soaked. She hadn't taken them off before she sat down.

But close enough.

Vaccines

Hello everyone!

We've been having a very fun, restful week, but unfortunately it ends tomorrow. Maisie has to go back to the hospital to continue testing and treatment tomorrow morning. 

Today, however, I want to talk about vaccines.

There are two reasons I'm bringing this up

1. A dear friend of ours had a baby a few weeks ago and recently announced that she would not be vaccinating the infant. 

2. One of the girls Maisie roomed with during our last hospital stay died last night of meningitis.

It is true that Maisie was not vaccinated against anything until she was eleven months old (except whooping cough - Charlotte got the vaccine during her pregnancy). This was only because she was too weak to defeat the weak/dead pathogens in the vaccines until that point. We were afraid that, far from protecting her, she would get very sick. She has now been vaccinated against all the usual things (hepatitis, chickenpox, diptheria, meningitis, measles, mumps, flu, polio, pertussis, rubella, pneumonococcus...I'm missing a few). She did contract some interpretation of measles and pneumonia very briefly, but she was hospitalized for two days, given some assistance in fighting the weak pathogens, and was fine. 

My friend, who will remain nameless, is choosing not to vaccinate because her older son was vaccinated and now has autism. She believes, as so many do, that the immunizations cause ASD (autism spectrum disorder). This is not true. There is a wealth of scientific information to back this up, as you can read here, and, if you need any more convincing, my niece was not vaccinated against anything until the age of two but was born with autism. There is no connection between vaccinations and autism. Furthermore, as this beautiful and eloquent young lady says, autism is not a death sentence. These vaccine-preventable disease could be.

To my darling second-time mother L, please listen to me. I cannot respect your decision because it means the end of our contact. I cannot risk exposing my weak granddaughter, who already has a compromised immune system, to the germs and bacteria that could be carried by your precious baby. By not vaccinating sweet little D, you are not only risking the health of your baby, which is one thing, but also the health of all children who could contract these hideous diseases from D. Please listen to reason and take that bundle of joy for her vaccines.

I do not mean to be disrespectful or rude. I understand there are health complications that can delay or prevent vaccines. But if you have a healthy child, or even an unhealthy one, vaccinate as soon as you can.

Thank you.

Eleanor.

Merry Christmas!!!

Today

there is no illness in my house

Today

there is no pain

no needles

no dialysis

no diagnostics

Today there is no suffering

Today there is a four year old

Who is four

Not four-going-on-twenty

But four

Not suffering four

Not sad four

Not scared four

Not damaged four

But four

Just

Four

About a half an hour ago, Maisie keeled over and fell asleep, facefirst, into a pile of used wrapping paper and new socks on an armchair, clutching three new stuffed animals. Jeff just carried her upstairs and tucked her into bed. I think this scene speaks to the success of our Christmas Day. She about wet herself when she started unwrapping presents, she was so excited. Mom, Dad, Jeff, and I just sat around with cups of coffee for hours watching her play. She is the best. This is a season of hope, but sometimes in the fluorescent light of hospitals and doctor's offices, I forget about the hope. I see doctors and surgeries and medicine and pain in the future, but I don't see hope.

But she does. She always does. Maisie is smart. She knows that her future hold pain, sorrow, suffering. She knows that her future is undetermined, she knows that her life is not the same as it is for her classmates and friends (except Kaitlynn) but she also knows that there is always hope. She never loses sight of the good things and the happy things. She sees them, always and everywhere, even during intense suffering. She sees hope. She is hope.

The Eye of the Storm

As y'all probably know, Christmas is in (gasp!) three days! We're taking Maisie home today so she can celebrate Christmas with us. We'll spend the next three days decorating, baking cookies, shopping, wrapping presents, unwrapping presents, etc. In light of her recent struggles, I am reminded how important it is to celebrate every moment of Maisie's life. Any Christmas could be her last. Any birthday could be her last. It's worth it to make sure she spends her days, even if they are numbered, full of joy and glitter and sparkling lights.

This morning Jeff and I went Christmas shopping for Maisie while Mom helped her get ready to go home. She's had a huge Doc McStuffins thing going on for a while now so we got her a pile of Doc stuff.

 

<--Right now this is sitting in the basement waiting to be wrapped (we took it out of the box for ease of playing on Christmas morning. It's worked better that way in the past). Those are her "patients" over there -- I don't have actual pictures but we got all those guys for her. And then there's a Doc McStuffins doctor's outfit and some more tools and a clipboard thing. I know she'll be thrilled. And hopefully these things are small enough that she can take them to the hospital to cheer up the long, dreary hospital visits that I know are coming. I hope this Christmas is a dream come true for Maisie, but I know it's just the calm eye of the storm. But if I have anything to do with it, it's going to be a festive, spirited happy-happy-happy calm eye.

Adam & Maisie Update!

Hey everybody!

I just got a call from Anna about Adam. Tomorrow he will be six weeks old and so far he is doing great. His heart rate has stabilized and in three weeks he's gained over a pound! Yay, Adam! So they'll be heading home soon and hopefully everything will go just smashingly!

Back to Maisie-the-Great: We met with an orthopedist this morning. Although Maisie's problem is not orthopedic, exactly, his expertise in the area of supporting and controlling the leg bones and muscles will help us support Maisie's limbs so she can continue walking and running and jumping and skipping. He is suggesting having ankle-foot orthopedic braces (AFOs) ordered to help her on days (like the other day) when she is particularly weak. Interestingly enough, he does NOT want her to wear them during physical therapy so that the exercises might help her muscles grow stronger.

We also met with a rare disease specialist, a dietician, and an endocrinologist. The endocrinologist and RDS have presented an interesting theory based on the evidence that Maisie has some days where she seems totally fine and other days where she can barely hold her head up (this has always been true, but we always attributed it to lethargy rather than hypotonia). They think it's possible that the heart of this problem is that Maisie is not regularly producing the proper proteins and wish to continue to study and test her (God I hate how gross and evil that sounds) to see if there is enough evidence to support this theory. The good news is that if this condition is not excessively severe, her problems might be solved with a high-protein diet and possibly some medication. Sorry this post is so scientific and medical, but I want to keep all my far-away friends and relatives appraised. I'll get some more fun stuff up later.

Rag Doll

So a few hours ago we met with a rare disease specialist and a neurologist, both of whom had thoroughly examined Maisie and conferred over their findings. They both agree that what Maisie is suffering from is acquired hypotonia, which means very low muscle tone not from an inherited genetic disease but from an outside influence. Normally the term "acquired" means it happened after birth, but this is just another example of how rare and unique Maisie is. She probably did not inherit these conditions through a genetic mutation but instead was affected in utero. By an outside source.

Maisie is still young. Her brain is still growing and developing, and (though, as you'll see if you read posts from 2009, we didn't realize it at the time) has been damaged by the attack on me during her gestation. There is every chance that she could develop further complications as she grows and changes, and it's possible that some of these could be headed off, prevented or diminished if we know more about them. For this reason the neurologist suggested, and I agreed, that we go ahead with several different diagnostic tests, such as fluoroscopy, X-rays, neuro exam, and possibly a CT and brain biopsy. Unfortunately this means Maisie will be spending quite a bit of time in the hospital over the next few days, but it might also save her life.

Now, back to the original reason we came to the hospital. It would appear that her the muscles in her limbs are not growing stronger. In fact, they may be weakening. We are hopeful that a change in the physical therapy regimen and her diet will help her grow stronger, but if the root source is a damaged nerve in her brain, it's hard to know what the future holds. We have an appointment with an orthopedist in a few days to talk about bracing and other support devices. For now, she's the same little girl she's always been.

There have been times in the past where developments in Maisie's health have pushed me over the edge, completely overwhelming and frightening me. I have had episodes of extreme guilt, depression, panic, and terror, but this is not one of them. I have been remarkably calm and collected through this whole process. I am well aware of the risks and challenges ahead, but they do not frighten me as I thought they would. Maisie has proved herself to be strong and determined to survive. I am determined not to dwell on the seriousness of her condition. I will absolutely fight and continue to fight for the best care for Maisie, but at the same time I want to enjoy her for who she is right now, today, even if she is a limp, sick rag doll baby. She is mine and I am hers, and nothing, not even death, can take that away from me.

A Little Background

I just met with a lovely man named Dr. G, who specializes in rare diseases. But before I tell you about his findings and theories, I realized I need to give you a little background.

You know already that Maisie has low-functioning kidneys and half of her left lung just doesn't work. She suffered from severe calcium deficiency as a baby because she could not digest lactose and thus has some funky deformed bones (bowed legs, crooked fingers). Some of these things are direct results from the attack, but many of them are side affects of the extensive nerve damage she sustained. I just want to make sure I've listed all the relatively little things that she deals with on a regular basis.

1. Vision. While she is not blind, we don't think Maisie's eyes work quite the way they should. She doesn't have the ability to see in the dark, for instance. Her eyes simply don't adjust to low light. She will also need glasses as she gets older because her cornea (the flexible lens over her eye that controls focus) is doing what everyone's does as they age: stiffening. Most people don't have an issue with stiff corneas until they are elderly, but Maisie's, for whatever reason, is growing stiffer and stiffer and in the next year or so she will start wearing glasses.

2. Seizures. Her whole life Maisie has had "simple partial seizures," which basically means one of her hands or feet will suddenly start shaking violently for about five minutes, randomly. There is nothing we can do about this. A wide variety of drugs have been tested on Maisie but she has responded to nothing. We believe that these are caused by a damaged nerve in Maisie's brain.

3. Hypotonia. Maisie was what is called a "rag doll baby," which means she had very low muscle tone for a long time. This is partly the reason she did not walk for three years, and she has been in Early Intervention (a baby physical therapy program) since she was just three months old to help strengthen her. Today Maisie has low muscle tone but not to the point that it impairs her. She can walk and run and jump and skip. Her arms are weak but strengthening, and she tires easily.

4. Digestion. The best way to describe the problems Maisie has with her digestive track, and indeed the way her doctors describe it, is "gastroenterological dysfunction." She suffers/has suffered from a variety of ailments that are random and sometimes go away on their own and sometimes require intervention, including high acid production, weak/thin stomach tissue, weak smooth (involuntary organ) muscles, enzyme imbalance, and inappropriate smooth muscle contraction. All of these things cause stomach aches, vomiting, constipation...basically any digestive issue you can think of, Maisie's had it. We are constantly adjusting her medication to suit her current needs and always on the lookout for issues. Any of these things could prove life-threatening. Indeed, her stomach is the scariest thing Maisie has to deal with.

5. Tetanus. When Maisie and I were attacked, I was stabbed by some kind of metal blade. Luckily I had been recently inoculated against tetanus, but Maisie, being a fetus, never had. She contracted neonatal tetanus and has been treated for it twice. We have no way to know whether this will continue to be a problem in later years or if it will eventually go away completely. But we are always watching for muscle stiffness, difficulty swallowing, fevers, accelerated heart rate, all symptoms of tetanus, all very frightening.

Not all of these little things are a problem all the time. Many, like the hypotonia, tetanus, and calcium deficiency, have been dealt with and (hopefully) are completely behind us. But, as you've seen if you've been around a while, Maisie is growing and changing constantly. Her rapid development from a baby to a girl coupled with her highly unique situation, means we can hardly begin to guess what the future holds for her.

Update from the ER

Hello hello hello!

Sorry it's been so long! My last post apparently didn't go up (Baby Back Ribs -- I just posted it). We've had such a wonderful few weeks that I just wanted to cuddle with my baby, make cookies, paint the office, and relax. Jeff and I have been apartment hunting but I don't know if we'll move anytime soon. I've felt so content, I don't want to change anything.

Maisie has been doing SO WELL! She's been eating, not puking, no seizures (did I talk about seizures? I'll get there), no fevers, nothing. It's been simply wonderful.

And then, about two week ago, she started walking funny. Normally she walks just a little weird, hardly noticeable unless you watch her for a while and really pay attention. Her left leg is misaligned ever so slightly. It's a problem we're working on in physical therapy, and slowly, slowly, s l o w l y it's been improving. But this was something new. It was almost like her right leg kept collapsing underneath her. I called her GP and she thought Maisie might have just strained a muscle and to call her back if it didn't go away in a week or so. It didn't, and then something else. Jeff's mom came to visit from Maine and when I brought Maisie to meet her she asked if she was blind. I was totally taken aback. As far as we knew her vision was virtually unaffected. But Martha pointed out that her eyes were not "tracking" or following people and things as well as they should. I called the GP again and this time made an appointment for a few days later but two hours or so ago she collapsed when I set her on the ground after taking her out of the crib (she still sleeps in a crib for safety -- I'll explain about that later). It actually took a few tries for her to stand up. And then she collapsed again on the kitchen floor. She wasn't fainting, but simply falling straight down. Her legs weren't supporting her. It was really scary. Of course, this is the week we don't have PT because the therapist is away with her sick ma.

I was home alone. My daughter was wailing and could not seem to stand up. I decided to take her to the ER. So here we are. Right now they're running diagnostics and performing tests on her muscles and eyes, trying to figure out what's going on. If it is a muscular failure, which is the working theory, her muscular organs could be in danger, and, in turn, her life.

It's funny. I'm not afraid. In the past I have sat in this very chair in the ER waiting room and panicked about my little daughter. But I feel weirdly calm. I am under control. I know that I am doing the very best thing for my Maisie, and I know that she is being taken care of. I have no false sense of security -- I know that she may not be okay. But I have enjoyed her fully and loved her to the bottom of my heart and so if this is it, though it would break my heart, I know that I loved her as much as I could. And she knows that.

Baby's Back Ribs

It's been a long, boring, rainy day and I just remembered that I promised I'd post about Maisie's past. So I think I'll do that right now, starting 10 months in when she had open-back surgery. She's had six major surgeries over the course of her life, but the first one was when she was ten months old. Up until then she was breathing with a CPAP machine (box thing with a face mask that uses air pressure to keep her airways open). The pulmonologist couldn't take her off it because every time he did her lungs collapsed. For ten months she breathed on a CPAP, and then one day I got a call from Dr. Livesay.

"Hi, Charlotte. I think I figured it out. Feel Maisie's back. It's kind of concave, right?"

And just like that, we had a diagnosis. Bowed Ribs by way of Calcium Deficiency. Not very scientific, but it worked for me and it worked for Dr. Livesay. I'm sure the orthopedist had some fancier word, but that's what we called it. Bowed Ribs by Way of Calcium Deficiency.

I should probably mention the calcium thing. I think I forgot to. Maisie was for a very long time, for lack of a better word, lactose intolerant. She was never nursed on my milk (even though we tried) because she could not digest it. She didn't react to it, exactly, but she didn't do anything else with it either. She drank it, then it was awkward for a little bit while it sat in her stomach, and then she puked it all up. At around 8 months we discovered that she was producing about half as much lactase (the enzyme that digests lactose) as she should be and the problem was remedied by injecting her every morning with motivation for lactase production. Some kind of medicine. I forget specifically what it's called (in case you haven't noticed by now, I have a terrible memory. I can't keep all these scientific names straight in my head. I have a notebook with all of them written down because I just can't remember them).

Anyway, she had some weird-ass bone deformation for a while there. The bones in her ankles were a little wacky (kind of didn't fit together properly and her feet were sort of sideways-ish) and a couple of her fingers have very confusing bends and twists. She's also a little adorably bow-legged. A lot of these things we sorted out with minor surgery and bracing when she was a baby. Her legs are still bowed (no need to undergo that major surgery - it won't impair her) and two fingers are twisty still because the orthopedist was afraid to fix them because the nerves and ligaments were all twisted around the bent bones. Her fingers worked, he pointed out, and if he tampered with them they'd be pretty but they may not function anymore. So we nixed that idea. Her feet had to be fixed quickly or she would not start walking. As it was she didn't walk until she didn't start standing until she was almost three. Oh and she has three implanted teeth and one just awkwardly missing because the calcium and vitamin D deficiency prevented them from coming in.

We'd thought that, by the time she was 10 months old, we had identified and started the process of fixing all her little bone problems. Apparently we overlooked one, because her back ribs curved in the wrong direction. And they were squishing her lungs. That was why she couldn't breathe!

It was so exciting - but also really scary. Because how were we going to fix that? The orthopedist called in two other doctors before suggesting that they take each rib out and turn it around. Just flip it. It was so simple, so elegant, and it worked like a charm. 

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.