Take a Breath and Keep Going

I was walking to class, running a little late. It was a warm afternoon and I got to the escalator and it was broken. I thought, "you've got to be kidding me". I walked up it and then stood there for a moment completely out of breath. Not like, out of shape out of breath. Like I can't breathe at all- I'm afraid I'm going to pass out- out of breath. 

Fast forward to the weekend. It was our song class show night. I kept coughing and coughing. I was worried I wasn't going to be able to sing, but the adrenaline kicked in and everything was fine. 

The next day I checked into the hospital.

The pulse ox read 80%. For my non-medical friends, a pulse oximeter tells you how much oxygen is in your blood. Normal is above 95%. Below 90% is getting dangerous. Being at 80% is bad. I was put into the ICU and put on something called a VPAP. A VPAP looks like the masks a fighter pilot wears and forces oxygen into your lungs. Whenever I took the VPAP off I would only be able to say a few words at a time and then take a breath and continue.

So I have the best- and by the best I mean the worst- timing ever. My parents were overseas on their anniversary vacation so they couldn't get home quickly to help me. I'm lucky that I had Carina there who could come over periodically throughout the day while she was running her own architecture business like a badass (shout out to Restructure Studio!). But there were periods of time were I was alone in the hospital with doctors coming in and out.

As soon as Mercedes heard that I was in the hospital and knew that Mom and Dad wouldn't be making it there any time soon, she took off from work hopped onto a plane. She was the advocate and friend I needed in that hospital 24/7. But she wasn't there before I had probably the worst encounter I've ever had with a doctor.

Now I was on strict instructions from my Cincinnati BMT doctors to NOT let them biopsy my lung because the irritation could cause GVHD (graft versus host disease) of my lungs. Then this doctor came into my room and said that she wanted to biopsy my lung to see what kind of infection it was so they could make an antibiotic cocktail to combat that specific type of bacteria. I said no and explained why I couldn't. They could afford to give me the gamut of antibiotics and I could not afford to get GVHD of the lung. She then proceeded to bully me and ended with the sentence "fine then, if you want to die" and left the room.

I was 23 years old, by myself and afraid. I called my parents (who were working hard to get back to the US) and my dad said that the next time she was in the room, to call him so he could talk to her. An hour or two later she came back to try to convince me to get a biopsy, but my dad was on the phone. I don't remember exactly what was said. All I know is that he was somehow advocating for me from the other side of the Atlantic ocean. They had a heated argument in which my dad said that she was way out of turn in saying that I was going to die if I didn't adhere to her treatment plan (because that's NOT true at all) and that she could not come back into my room until Mercedes arrived.

Mercedes was there a few hours later, heard what that doctor said to me and then told her off again. Needless to say, I am so thankful for my family. Merce and Carina spent the evening with me while Brandan facetimed with us. Mercedes spent the night and by 10 am the next morning my parents were there.

The ill-spoken doctor was allowed back in my room since I had a family member there who could speak up for me (while I was huffing and puffing between words). She returned when my parents came and apologized for how she spoke to me and agreed to not biopsy and continue with giving me the wide scope of antibiotics.

I was in the hospital for a week before I was able to go home. My family standing by me through all of it. 

But over the next few months I noticed that I was short of breath a lot of the time. When I went up to Cincinnati for a check-up with my BMT docs, they scheduled an appointment with a pulmonologist. I did a pulmonary function test (PFT) and they told me I was at 42% lung capacity. They said this like I should have been expecting it, but it was a complete surprise to me. In fact, the doctor told me that I had to have known that since after I had my BMT. After understanding I had no idea what he was talking about, he told me I had bronchiolitis obliterans- that my lungs are slowly scarring over which is why I get winded so easily. Also, this means that I could quite possibly need a lung transplant in the future.

I freaked. I didn't understand how I could not have known, how they could not have told me that I had another disease due to the transplant. That my lungs were slowly dying.

I went back after another few months and I was down to 38%. Another few months down to 35%. Another few down to 33%. And then it stopped...

I am a lucky person. I have to admit it. I have been at 33% for a few years now and I don't intend on going down any further. I breathe ok, but I will never be a marathon runner. I do dance for exercise that gets my heart rate up and makes me breath hard. I choose to walk to my grocery store around the corner and carry all of my groceries back even though I know sometimes it will be heavy and I will be panting when I get home. And I chose not to waste time and to walk up 6 flights of stairs when the elevators were backed up at work. I got to the top and all of my muscles ached, not because they aren't strong, but because they didn't have enough oxygen. I will do these things and continue to push my body and lungs because I will not let my lungs tell me what I can and cannot do.

I will take a breath and keep going.

Unsung Heroes

It's been 7 months since my last post. Obviously I don't like coming back here. My time keeps getting farther and farther apart between each post. It's both cathartic and painful. I end up crying as I write 100% of the time. But this time, instead of telling you the next horrible thing that I had to go through, I'm going to share some of the really awesome things that I can now appreciate that other people did. The unsung heroes of BMT kiddos.

1. Did you know you have a diet restriction when you get a BMT? This is NOT the good thing- wait for it... Like worse than a pregnant lady. Needless to say no sushi, no alcohol (ok I was 18 anyways), no deli meat, no cheese really (unless it was super lame cheese like the least sharp cheddar ever), NO FRESH FRUIT (all I wanted was some strawberries, you guys!), etc. Basically, everything had to be cooked until dead. So apparently there was a food all BMT patients wanted at some point: french fries! Because what kid doesn't like french fries?! Problem is, they have to be FRESHLY cooked every time- nothing that had been sitting around. At the time, when my parents brought me some french fries from the McDonald's a block away from the hospital and told me that the McDonald's employees made them fresh for me, I didn't think about it (oh hey self centered 18 year old girl). Now I think about that and smile happy tears. Cincinnati Children's Hospital has one of the largest children's BMT units in the US. The number of times that parents show up to that McDonald's and ask for fresh made french fries (say that 10 times fast!) must have been innumerable (and still happening to this day, I'm sure). And I'm guessing these McDonald's employees know what's down the street (oh hey sick kids) and they do it every time. I mean, they may not have been happy about it all the time, BUT THEY DID IT. And that's all you can ask for. When your chemo'd up kid that barely wants to eat anything- because it is guaranteed to make them vom- wants any type of food, a parent is desperate to get it to them. And that CCHMC McDonald's delivers. So thank you McD's. Because that was a definite staple to my oh-so-specific diet and many other BMT kiddos as well.

2. The guitar guy. Ok so I kinda hated him at the time- not gonna lie. Not him as a person, but the happiness he brought. I was an 18 year old girl who watched her friends on Facebook go off to college and have fun, who knew what she was missing. So this guy with his guitar and soothing songs pissed me off. And he knew it. When I first met him, I tried to be nice and listen. But that quickly ended as I felt worse. Finally, one day he came by and didn't play a thing. He just asked me what kind of music I like. The next day I got a mix CD from him and it was actually pretty good. Some of the songs I knew, some I didn't. But more than what he did for me, it's what he did for the younger kiddos- the five year olds who wanted to hear the hokey pokey and all those kids songs. He spent his days going from room to room cheering up the little ones and making them smile. Yeah- maybe he didn't quite reach the angsty teenagers, but he helped a lot of kids. I can definitely attest to the fact that a smile is some of the best medicine.

3. The nurses. Yeah- I know that we all know nurses are awesome. They can make a hospital experience 100 times better. And the nurses at CCHMC did. The best example is Halloween. It's not just on Grey's Anatomy that hospital employees dress up in costumes for the pediatric unit- it's REAL LIFE. Whaaaaat?!? For real though. They made candy stations for the kids to go by and get candy (safely so that nobody got sick from one another). They decorated the halls and I think there was even a little music. I didn't fully participate, but I did get dressed up (I have NEVER missed a chance to dress up, guys). So yeah- holiday celebrations in the hospital aren't just for the TV shows. That's real life too- and all because of the AMAZING nurses who take time out of THEIR lives to help the kids feel somewhat normal in their completely abnormal hospital world.

So yeah- life sucked a lot during the BMT years. But there are incredible people out there that do things for kids that they don't even know. They help these kids to feel some bit of happiness in the dark times of their lives. I was able to witness that as an (almost) adult- and even got to benefit from it myself. So I'm going to say thank you to those people- even though I know they will probably never read this. All of you who are reading it will know that they are the unsung heroes of some BMT kid sitting in his hospital room fighting for his life.

Workout Videos Gone Wrong

In college, my roommates and I decided to dedicate a month to doing a workout video every day. This did not happen. One by one, we all stopped doing it... within two weeks. I dropped out first on the second day. Not because I was unmotivated, but because my ankles began to hurt. The video entailed a lot of jumping (jumping jacks, burpees, etc). After the first one, my ankles were a little sore. By the second one, I was limping.

I thought I had just hurt my ankles a little bit and kept walking on them like normal. After a few weeks of pain, I finally went to the orthopedic doctor. After taking CT's of my ankles, he delivered me the same news that he had told me about my hips. I had avascular necrosis in my ankles. I asked all the right questions, but there was only one that mattered. What was I going to do about it? His answer brought me to tears. He told me that there was no good treatment for avascular necrosis in ankles. Unlike my hips, ankle replacements aren't something they do in America. I think maybe in Switzerland and other places in Europe, but not the US (thanks FDA). The only option was to fuse my ankle bone. This would make me unable to move my ankle joint at all. They said it would affect my walk and I would only be able to wear flat shoes. I joked that they would have to fuse it in the shape of four inch heels like Barbie... They said no.

My next move was to go to the best orthopedist in America. I was hoping that he could offer a different solution besides Switzerland or fusion. NOPE. This time he did MRIs and said that not only was my ankle deteriorating, it hurt so much because I had a whole bunch of little fractures around it, including in my heal and bottom of my femur. Well no wonder! He put my "worse" ankle in a boot and my other ankle in a wrap, plus constant crutches. He said I would wear those until I was ready to fuse them. Woah woah woah woah WOAH. There had to be another option.

Buh-bud-da-daaahhh! Stem cells. Unfortunately, this is a practice that is not covered by insurance (thanks again FDA), but we looked into it anyways. We talked to the "best orthopedist in America" and he said it definitely wouldn't work. We then talked to the doctors who did the stem cell injections and they showed me x-rays of people who did it and regrew bone. The patients weren't exactly like me, but similar enough that I was willing to try.

The first few times I did it, they used protein plasma (which has some stem cells in it) they took from my blood. The process was excruciating. I had to be fully awake when they did it for some reason (I honestly can't remember why) and they used a live x-ray so that they could see the bone and give me an injection directly into it. They numbed the area where the needle would go in, but when they injected the cells, I literally screamed bloody murder. I think that may have been the most painful thing I've ever experienced in my life, which is saying something. For the scientific explanation, it was painful because a lot of liquid was going INTO my bone making it expand. If you've ever had growing pains, imagine all that pain over the years concentrated in to 20 minutes.

I understand why they wouldn't let my parents in the room when it was happening. When I came back for my second session, I saw the nurse who had been holding my hand the first time. She showed me the scabs where my nails had dug into her hand. I didn't even realize I had done it. I apologized to her profusely and she said it was ok- that's what she was there for. Even though it was so painful, I was able to walk like a normal human being again. I think I did five treatments overall. The last one was with my bone marrow. Compared to the ankle injections, getting your bone marrow taken from the back of your pelvis is nothing. The worst part is to hear them hammering into your pelvis. The only pains were from the numbing shots and some pressure when they actually took out the marrow. So if you ever want put yourself on the bone marrow donation list, do not be afraid of the extraction! It really isn't so bad and they will probably give you loopy medicine anyways. I encourage everyone to get on that list!! People like me need you to save our lives!

But let me step off my soapbox. The point is stem cells are AWESOME. After a few months, my bone regrew. We went back to the "best orthopedist" yada yada yada and showed him the x-rays of my regrown bone. His response? It probably regrew because I had improved blood flow, not the stem cells. Oh ok. Suuurre. Makes sense, sporadic regrowth. But here I am. Walking around! I still don't run though. I'm not sure if it's fear of fractures or because it's sound medical advice. But maybe one day... :)

Last Night's Epiphany

I'm taking a quick break in my journey to share something in real time with you all. My last post was about depression and I tried to be very honest. In light of that, I also want to share with you what's going on right now.

Last night, I was lying in bed having a panic attack. I have had a few of these in the past few months and have developed a technique to deal with them. First, I turn on some music from my "sleep" play list. Next I wrap a blanket around my back and cross my arms in front of me and pull tightly. I had the idea for this because I have heard that when people with autism start having panic attacks they have someone/something hold them tightly because it depresses the central nervous system. While holding myself, I sing with the music because it helps me control my breathing. The attack usually lasts for at least 30 minutes.

When having a panic attack, everything that I try not to say to myself in daylight pops into my mind. Right now, my biggest internal struggle is not having a job. During this episode, I asked myself why not having a job was giving me panic attacks. I answered that it's because the only thing I could ever depend on was being smart. I've never had health or a love life, but I always had my brain. That was my success in life. And without having a job, I felt I was failing in my "smart" area of life. So I had lost the last thing that I felt good about.

Then I went on to how I felt betrayed by my body. This is nothing new to me. My body has betrayed me since I was born, but now, as a young adult, I feel it has betrayed me the most. On the inside, my bones break easily, only 1/3 of my lungs work, I don't produce any tears, and I can't have children (I know a lot of you don't know these things, but they will be addressed later on in my blog). On the outside, I have stretch mark scars everywhere and extra skin on my torso from all of the steroids I had to take. I honestly am not sure which one is worse: the internal or external betrayal. From the inside, things fail. From the outside, I feel ugly. And I know this is why I fail at a love life. Because I don't feel that anyone could love someone who has such a failure for a body. It's as simple as that. So the three pillars that I believe compose a life, health, love, and knowledge, are all broken for me.

As I figured this out, I had an epiphany. It shouldn't have been an epiphany because if I had told this to anyone, they would have easily said that I needed to go to therapy. But I couldn't see all of these things until I was mid-panic attack. I realized I cannot solve these issues by myself. What I've been doing is (clearly) not working. I tried to wrack my brain to figure out what I could do to feel better about my body or to try to let someone in to my life, but I honestly have no idea how. It took all three pillars completely collapsing on me to see that I need help.

This post was very difficult for me to write. I always fear rejection for what I've written in my blog. But I also feel liberated when I write down what I'm afraid to tell people. What I don't want from this post is for people to contact me and say that things will be okay and that I'm beautiful how I am or that I'm still smart even though I don't have a job. What I have said is how I feel and no matter how many times people say these nice things to me, it will not help me change how I feel about it. These kinds of feelings require more than pep talks and kind (and I know sincere) words to make me feel better.

My sister always says that everyone should see a therapist. I believe that's true. We all have something we're struggling with that we don't know how to fix. People may try to reassure you about whatever you're coping with, but it doesn't work. It may be that you're unhappy with something about yourself or you're having trouble coping with something (like an event or person). As you're reading this, I'm sure you are thinking of what it is that perhaps you struggle with. I'm not saying that you have to go to therapy, but I'm asking you to think about it. You may decide that it's not the thing for you. But you also might decide it is. I know that it's my turn to go back.

It's Bad

I stared at this page for 20 minutes before I started writing. I honestly didn't know how to begin. How do you start a post about depression? It's not something that is easy to talk about and, honestly, some people don't want to hear about it. To put it simply, it's bad. Not the person, but just depression in general. It's a bad thing that people have to deal with. Nonetheless, it was a part of my story.

The first thing you should know about depression is that the person who is depressed often doesn't know they are depressed. It's nothing that anyone ever wants to admit to themselves. I wrote about having depression before- but that was some evil drugged up monster from my days in the isolation hospital that I barely remember. This was different.

I was tired all the time. I thought I was sick with a flu or something. I barely left my bed- only to use the restroom, eat food (not very often), and go to class (even less often). I had stopped showering regularly (about every three days compared to my normal once a day) and I cried all the time- but never in front of anyone and I'm not even sure what about. But I remember there was a lot of crying. And I hid it well. Eula and Caitlin were completely unaware. They would ask me to come out with them and I would just make excuses until finally they stopped asking. I slept all the time- probably only awake 5 or 6 hours a day. And I took ambien at night because I had slept the day away. It was bad.

The first time I was told I was depressed was by my sister, Brandan. She and I had gone to dinner together at the Hula Hut. She was the first person with whom I was honest. I started by telling her I didn't know what was wrong with me- I was crying all the time, slept all the time, didn't want to eat, and just felt sick in general. I can still remember exactly what she said, not that it was a complex sentence. She said, "Bean, you may have depression". She said she had seen it in someone else close to her and this was exactly what it had looked like. I laughed at that. My mind went No way- you don't have depression. Depression is really bad and you are not really bad. And I said that to her. She told me that it was bad. Everything I had just told her was bad. I had lost weight from not eating and stopped caring about doing anything. That's bad. I started laughing again until I began tearing up. And that was the first time I thought that I might have depression.

That night I went home and laid in bed again. Brandan told me I had to tell Mom and Dad. She said that I needed help and it wasn't something I could do on my own. I did not want to tell my mom and dad because I felt stupid for having depression. Why couldn't I just be happy? Why can't I choose to be happy? It was frustrating. So I called Mercedes instead. I told her what Brandan and I had discussed and she agreed with B. I had to tell Mom and Dad. So finally I called.

I need to preface this with the fact that my mom and dad are fully supportive of me and everything that I had to deal with in depression. But when I first told them, they didn't understand. They had never dealt with depression and never really been explained how it worked. So when I called them crying and saying I thought I had depression, they kind of went - what are you talking about? I had been hiding it from everyone, including them, so they were completely blindsided. They just didn't understand what I was saying and I wasn't doing a good job explaining it to them. Also, I don't think any parent every wants to hear that their baby is depressed. I got frustrated and upset with how they were reacting so I hung up and called Mercedes again. She helped calm me down and then called Mom and Dad. My mom was in Austin the next day.

Now I have no idea what Mercedes said to them to make them understand what was happening to me, but I am so grateful that I had her. She talks with people who deal with psychological problems for a living so she was able convey what depression really was to my parents who didn't understand. I was so lucky to have people who understood what depression was instead of hearing me say it and then ignoring it because they didn't know what it was or how to help.

So my mom stayed in Austin with me for two weeks while my dad held down the fort at home. Enough to get me to start showering and eating again. She went to all of my classes with me and got me back to normal sleeping hours. She was so amazing, I can't even begin to describe. She was literally with me 24/7 for two weeks- leaving Florida and anything she was supposed to be doing to come take care of me. I was put on antidepressants to help me feel better. But it's never an instant fix and sometimes antidepressants aren't enough. It's not like I woke up one morning and said "I'm happy! I'm cured!". I soon had to go to Cincinnati for my regular check up and saw Mercedes for the first time since I had admitted to being depressed. One night it was just Mercedes and I awake and I broke down to her. I told her that I was tired of everything. Tired of being sick or broken all the time. I told her something that I have never told anyone else. I said that if I got really sick again, I didn't think I would fight back. I was tired of fighting illnesses and didn't want to do it anymore. I look back at that now and I hate that I thought that. It's not who I am. But depression does awful things to a person.

So here's my spiel: If someone ever tells you they are depressed, they need you. It's bad. They need you to understand and not brush it off. And there are things that you should and shouldn't say to them. They don't want to hear "it'll be okay" (because they don't see that right now) and "cheer up". What they do want to hear is "you are important", "what can I do to help", and "I'm here for you".

Foggy Times

The last post featured both hips. But in between those surgeries, there was another... experience. When I went back to school in August, my vision started becoming blurry. No, not blurry, foggy. Initially, I assumed it was something to do with my dry eyes. However, after a trip to my ophthalmologist, he was like "daaayum Gena, you got cataracts". Well that's what I heard at least. I'm guessing he probably broke it to me in a much kinder, easier way, but that's what I like to think happened since I don't actually recall it. Cataracts is a foggy film that covers part of your eye making it difficult to see. Usually, people don't get this until they are pretty old. But guess what caused mine? Steroids- shocker! Because steroids are the devil.

So we set up a time to do one eye and then the other- one in August, one in October. I did the first one at this amazing hospital in Austin. I have no idea which one it was, so don't ask Austinites. They even had these hospital gowns that had pockets in them that they blew warm so that you didn't freeze. Also, we did the surgery ON MY BIRTHDAY. So they fixed up a room with lights for me and sang! I think they felt really bad for me. So this was probably the nicest hospital I have ever been to. The surgery went really well and I woke up from my surgery and offered to drive, like you do when you've been sedated. Keep in mind I was on crutches with a fresh hip replacement for my right hip and could literally not drive. Physically impossible. My mom gracefully declined. I don't remember this happening.

I wore an eye patch for a week and went around talking like a pirate because why the hell not. Finally, the patch came off. OH. MY. GOD. The first thing I said was "There is no way in hell I should have been driving". I'm pretty sure I could have been certifiably blind. Like I couldn't read signs or really see the lines on the road- especially in daylight. I spent the next few days shutting one eye and then the other. My new, cataract-free eye had the most vibrant colors I had ever seen! I couldn't get over it! When I went back, I asked the doctor if the colors were always this vibrant and I had just gotten used to the cataracts. He told me that, as people age, they slowly lose the vibrancy because they very slowly get cataracts. Basically, I had eyes of a newborn and it was brilliant (haha pun). So all you people reading this- you are missing out on the vibrancy! But don't worry- one day you too can get your cataracts removed.

Naturally, after the first eye, I got the second eye because is was still hella foggy. This time I had the surgery done at a different hospital. It was not my birthday, they did not have awesome warm hospital gowns, and it was rather lackluster compared to the other hospital. Then, while they were doing the surgery, something must have happened because I suddenly became aware of what was happening. My eye opened and was very blurry. I said something out loud- I have no idea what- and then my doctor said to me "Genevieve, I need you not to move your eye please". I said okay and then promptly went back to sleep. So that was horrifying. I'm going to preface this next part with a) I do not remember this and b) sedation can seriously alter your personality. APPARENTLY, I woke up and then started telling the nurse about how horrible their hospital was and all the great things about the other hospital. So yeahhhhh. I felt pretty bad about that in retrospect.

And yes- I again offered to drive. My mom said no.

My Hips Don't Lie

So things were going along pretty well. Infusions were being tapered off, I was in college at UT, and I was feeling pretty good overall. One day I was carrying my laundry down the stairs and my hip started hurting. I didn't think anything of it and continued about my day. This went on for over a month until I went home for summer break. It was hurting every day and I was constantly limping around so I went to a chiropractor. Not the best idea, but we thought it would help at the time.

We went twice to the chiropractor and it did nothing to help. So we ended up going to a doctor. He had me move around, watched me walk, and then took some x-rays. Then he came back and told me that I had avascular necrosis in my hips. The right one was worse than the left because it had already fully cracked.

For my friends who don't speak medicine, avascular necrosis is when your bones begin to die due to lack of blood supply, especially in joints, leading to fractures and breaks. So I had this awesome bone disease and it had already fracture my right hip. Let the surgeries begin!

I had my right hip done in June of 2010. Because of the atrophy from being in the hospital, my muscles were still not back to normal- about 70%. They had given me an epidural so that I wouldn't feel anything when I woke up from the surgery because apparently that would have been bad. They took me off the epidural after 2 days and I started "walking". Ok, more like shuffling. They gave me a walker the first day, but I was able to just use crutches the next day. I was on crutches for about a month and then just used a cane. When I got back to college, I was down to a limp and my right hip felt great!

Written out like this, the process seems somewhat easy. But it definitely wasn't. There was a lot of pain and a lot of drugs. I felt very helpless. I couldn't move easily or quickly and I had to be very careful. If I rotated the wrong way, it could pop out. If I stepped on it the wrong way, it would pop out. If someone stepped on me, the world would explode. Things like that. And the physical therapy. Aka PT. Aka pain and torture. I HATED PT. The worst was the leg lifts. You laid on your side and tried to lift your leg. At first I couldn't even lift it- someone had to help me lift it. And I couldn't do it with a shoe on for about 2 months. Considering that they cut a 6 inch hole into the outside of my leg, this exercise was by far the hardest. The muscle was pretty destroyed and I still find that it is my weakest leg muscle. So yeah. Pain and torture.

You may think this hip story is over. But wait. Part Two: The Left Leg! In October, I had rehabilitated pretty well. I wasn't really limping anymore and then BAM. Left hip hurts. It was the same old, same old. It had cracked and needed replacing. So repeat of above, but this time over Christmas break. This time, I only had my already-surgeried-on right leg to keep me standing. So it was a bit harder than before. I was still on crutches by the time school started again. I think it took me 3 months this time to get off crutches. But I did do it!

And now I can walk, I can talk, and I can even walk AND talk. They said it would probably be 15 years before they needed replacing again. I'm betting on 30.

My Biggest Regret

Well the good news is that the worst is over. But I hate to say that it isn't a pretty picture from here on out. There is still a lot to the story.


Everyone knows that hindsight is 20/20. But damn- I really wish I had a premonition or something. My family and I went to St. Maarten right before I was going begin university. We were all so excited to get away and soak up the sun. Now the transplant team had warned me that I needed to stay out of the sun because it can make you get GVHD. We bought a UV suit (long sleeves and pants that kept out UV rays) and a giant hat. I stuck to the shadows. I did what I thought was right. But in the end it was all wrong. And if there are any BMT patients reading this- I swear- do NOT go in the sun.

While on the vacation, I began to get very lethargic. I just wanted to sleep on the couch instead of enjoying the island. When I got home, my skin started turning very red- like lobster red. Soon my mouth began hurting. I had sores all over and I couldn't eat. My skin started peeling off in large chunks. I had gotten GVHD of the skin and mouth. So we started up with more immune suppressants and steroids again. But this time it was chronic instead of acute (like during my intestinal GVHD). I had done it to myself and it is by far my biggest regret of my life.

Soon I began my freshman year of college. I met my AMAZING roommates Caitlin and Eula. They were great. They saw my centimeter long hair and my odd body shape, but they accepted me as a sister. But things were not great for me. I had become so itchy- we still have no idea why. I had to take high doses of sleeping pills to sleep because of the itching and I would make my mom stay on the phone with my while I laid there scratching. To this day, I still think that extreme itching is far worse than pain. And the peeling skin was bad. It came off so thickly on the bottom of my feet that it made it hard for me to walk. {sorry for the graphic details}

Then one morning I woke up and my eyes hurt so badly. I had no idea what was happening. Luckily, Eula had some eye drops and let me use them. It was such a relief. I made it to the eye doctor finally and was told I was no longer producing any tears. I had GVHD of the eyes.

I don't know how to express how disappointed I was. I felt like it just kept piling on. First the skin (which I was so self conscious of), then the mouth (making it hard to eat), then the eyes (making it hard to see). My eyes had gotten so dry that I had formed patches over my cornea so that everything was blurry all the time. Ever since then I have had to put in eyedrops every 15-45 minutes. It never went away.

I was getting weekly infusions. To do these I had to have someone drive me because I would get an IV in the crook of my arm, get a ton of Benedryl so that I didn't react to the blood products, and get an infusion of IVIG and high dose steroids. This usually was a 5 hour process. It was pretty much always my sisters who drove me- Carina and Brandan. And a lot of the time (especially when I first had to do this), they would stay with me for the whole 5 hours. And I would always pass out from the Benedryl. So they would bring their work and quietly sit by me as I snoozed, go get me lunch, and gently wake me to eat something. Then they would drive a drowsy Genevieve home. Once a week. For five hours. FIVE HOURS. Seriously- my family is the best! And this went on for a few years. I have the scar in the crook of my right arm to prove it.

Real Friends and a Make-A-Wish

So it's been a really long time. I know. But I'm ready to start again. Before I go into medical things, I just want to quickly say how grateful I am to have amazing friends who stuck with me. During Christmas break of 2008, my best friend, Loren, came to visit me in Cincinnati. She gave me a big hug as soon as she saw me, despite my new, hairless and round appearance. I remember having to ask her to help me stand up and she did it without making me feel embarrassed. And best of all, she asked me questions. Loren wasn't afraid of me. Her first question was "why do you have to walk up the stairs that way?". At the time, because of my atrophied body, I would literally grab hold of the railings and pull myself up step by step. And I explained this to her without shame because she was there with me and did not judge me because she was a true friend. But my transplant really did let me know who my real friends were. And to name a few: Angela, Briana, Jordan. These friends saw me at my worst, but treated me like I was normal.

So I had recovered for a year. Right after my 19th birthday, I got to take my Make-A-Wish trip to New York. And it was AMAZING. While there, I saw three musicals: Mary Poppins, Lion King, and (my favorite) Wicked. They arranged for me to go backstage before the shows for both Mary Poppins and Wicked. I got to stand on the stage of Mary Poppins and speak with the cast. For Wicked, I went backstage and met some of the cast and tried on a costume. That was a wonderful opportunity I wouldn't have had otherwise. Also, I went to the empire state building. The staff let me go to the very top (I didn't know there was more of a top than the observation deck, but there is!). Unfortunately, my trip was cut short because I needed to go back to Cincy for some more testing and treatment. But that's ok. I still had fun! Here are some pics from the trip! (I still look kinda transplant-y in these)

Trying on a coat and hat from Wicked (the Emerald City song).

Dad and I eating at the restaurant under the bridge in NYC.

Released with Visitors

Finally, in November, I was released from the hospital. It was so nice to be free! Now, as Carina mentioned, my mom left Cincinnati to go be with Carina for a few weeks while she was at the end of her pregnancy. It was pretty difficult for me when she left, but I also had some backup fly in! Specifically Joyce, Dave's mom, came in to help. Also, my best friend, Loren, and my grandmother, Matto came to take care of/visit me, too!

It was amazing to have Joyce there. And since my brain is a little fuzzy, I think it would be best if she could remember for me.
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I wasn't quite prepared for what would unfold over an extended winter weekend spent in Cincinnati. Excited about seeing Gena, knowing she was in the midst of her very long journey to recovery.  I was thinking a lot about our reunion. What I hadn't expected was that I would be reconnecting with a rather fragile and frail young woman, who was miles from the vibrant teen that I had spent time with just several months before. When I signed on to keep Gena company, so Mercedes' mom would be with Carina and Jason,  I planned on playing a few board games and maybe watching some old movies together.  Instead, I would witness Gena work so hard simply to draw enough strength to stand from the sofa. Dave and Mercedes' butler pantry would become a satellite pharmacy with vials and syringes and medications that appeared way too much for a petite person.  I wanted to help in some way, but when I looked deep into Gena's tired and beautiful eyes, I saw the perseverance and fight that she possessed.
Yes, we had the thrill and anticipation of waiting for Jim and Val's first grandchild, and for Matto a great grandchild. Such delight! But at the other end of the spectrum, Matto and I would prepare a quiet cup of tea as we shared stories of family and life, whispering the time away and hoping Gena would be comfortable for that hour.  And at center of it all was a wonderful father, adoringly caring for his daughter, fiercely wishing that he could trade places with his little girl, but in truth, the very best thing he did for her was to give her better medical care than any doctor or nurse ever could have provided. (Sorry, Dave and Mercedes!)
At last, Carina was in labor.  The house was alive with excitement.  That night, we all went to sleep, dreaming of sweet little babies, only to wake to the wonderful news of Sophia's arrival.  A beautiful baby girl would begin the next generation of the Dullum family.  This would be the shot of adrenalin that would ignite Auntie Gena.  That very morning would be one I will remember for my lifetime. Since her return home from the hospital, Gena was bound to the main level of the house because of the climb of a full flight of steps. But a burst of joy at Sophia's arrival and the promise of the bright future caused Gena to defy any challenge.  The stage was set...We all glared at that endless staircase.  Yes, Jim's brilliant idea of blasting the Rocky theme from his laptop, began the feat.  Matto and I clapped and cheered from the living room, louder than any major sporting event could garner!  Step by step, Gena would climb that mountain, fearlessly forging upwards. Nothing could get in her way.
As I slid into my seat on the United Embraer, heading back to New Jersey.  I smiled and teared at the same moment, as I reflected on a very special weekend spent with a very remarkable person!
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Having Joyce there was a life saver. As she said, I was very weak. I could barely (and sometimes not even) lift myself off of the couch or a chair without help. I was "training" to do steps by wearing a belt around my waist so that someone (like Joyce, my dad, my sister, my mom, etc.) could hold on to me in case I fell.  As Joyce said, Sophia had come and everyone was happy. That was my first motivation to get up the stairs- I was happy for one of the first times in a while. My second motivation was that my best friend- Loren- was coming to visit me in Cincinnati and I needed something to show for myself. My final motivation was that I was bribed. That's right- bribed. Ali Kwiatkowski, Dave's sister, Joyce's daughter, my great friend, had gone to seen Wicked (my favorite musical) and had gotten the cast to sign a poster for me wishing me well. It was so generous of her to take the time to do that for me- so truly special. I think that's when I knew Ali and I would be the best of friends.

So everyone cheered me on as the Rocky theme song played in the background. My dad and Dave flanked me in case I fell. But I didn't. It was one of the hardest climbs I've ever had to do- both physically and mentally. I left the main floor so that I could finally sleep in a real bed after months of sleeping on a couch or blow up bed. I couldn't have done it without everyone. By no means was my climb pretty, but I did it. I literally had to grab on to the hand railing with both hands in order to help hoist myself up one stair at a time. BUT I DID IT. And I think everything really did start getting better from there.

Bloody Nose and a Sisterly Visit

So the good news is that everything gets better from here. Yeah, there are some dips and lows that sucked, but that has been my lowest low. I hope that I never reach a place like that again.

So I was locked in my isolation room still. Unfortunately, the chemo messes with your senses a bit. I had a really keen sense of smell and no sense of taste. I would have my family bring me the spiciest food they could find just so I could taste something. And if you know me, then you know that I do NOT do spicy. Like at all. But I also had the nose of a dog. I could probably have sniffed out drugs if you wanted me to. But having a great sense of smell wasn't always a great thing. The littlest stench could get me retching. And unfortunately, one time my vomiting had a bit of an issue: Mercedes had come to visit me like she did every day and I would have her sit next to me on my hospital bed. I think she must have just eaten and my super smell picked up just the slightest hint of her breath. Not normally a big deal and she doesn't really ever have bad breath! I was just overly sensitive. So I yelled "Bucket!" and someone handed me my vomit bucket. I threw up- but that wasn't all. Apparently, I must have busted blood vessels in my face and to my whole face swelled and was black and blue! It looked SO crazy.

We called the doctors immediately and were like "WHAT JUST HAPPENED???". We were scared. I didn't have platelets to clot the blood. I was emerging from my depression haze. I was a huge puffball with a puffball face. Also, I had started coughing up these big mucus blood clots and having nose bleeds multiple times a day. It was so disgusting!! The doctors hadn't really seen this happen before. Apparently, I must have thrown up so violently that my blood vessels broke and needed some time to heal.

But I was on the upswing and this was a very minute hiccup. Also, I wasn't too deterred because my other two sister, Brandan and Carina, were coming in town. I was too excited.

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So here's Brandan's perspective:

Reading Gen's blog is an enlightening experience for me.  I was not there for the transplant or much of her time spent in the hospital afterward.  In fact, I was very far away both geographically and in my life circumstances. Gen received chemo treatment a few weeks before my second year of law school.  So, the bulk of the blog takes place during my 2L year, when I was taking a full load of classes while working at the county attorneys' office. At the same time, I was flying around the country to interview at law firms for my big second year internship. It was busy to say the least.  Gen has already explained how we chatted by webcam and on the phone to try to support her as much as we could remotely. I would also call and try to get the 'inside scoop' from my parents and Mercedes to really understand what was going on. As much as we talked during that time and afterward, I don't think I ever did. I am not sure that there was a way I could have considering how foreign the whole experience is. Since I am the closest in age to Gen, I did experience many of her pre-transplant hospital stays. But those were all different: it was a few days, maybe a week while we rotated watch over Gen and the docs solved the issue. Mom, Gen and often Dad lived in the hospital for months during the transplant. For someone who was not there to witness the whole thing, I do not think it is comprehensible. I know this is a somewhat long intro about myself on a blog that is really about Gena, but I am not sure my comments on her transplant make much sense without the context of how isolating the whole experience was, not only of Gen from the world, but also of the world from Gen.

I did get to visit Gen in the hospital and see her life there a few times. The visit that sticks out most was right after Gen got those black eyes she was talking about.  Carina and I came up at the same time for a sisters weekend to try and cheer her up. The plan was to play board games and cards and do whatever else we could think of to make it a fun weekend within the confines of her hospital room. We had heard about the black eyes incident, so to try and bring some humor, Carina, Mercedes and I put black paint under our eyes like football players and called it our 'war paint' for the game day. We showed up in the isolation area and then scrubbed down one more time to go into Gen's room.  I had "seen" Gen over the webcam, but the initial impact of seeing her in person was overwhelming.  The transplant looked like it had literally beaten her up, leaving her bruised both physically and mentally.  I guess the black eyes didn't help.  I tried not to let it show how different she looked and acted, but I don't know how successful I was. My next impression was how the room seemed like an impersonal hospital room and a lived in home at the same time. The imposing IV poles and beeping machines stood next to Gen's pink stuffed animals and my mom's pajamas. As a person used to thinking of hospital rooms as a temporary stop, it was a very discordant image. 

We spent the rest of the time there playing games, solely, but constantly, interrupted by the rhythmic routine of nurses taking vitals and doctors buzzing in and out of the room.  Monopoly was the main event, but the game I remember most was Life.  As we moved those little cars around the board I remember thinking "how strange, we are playing this lighthearted game called Life while Gen actually battles for hers." I considered throwing the game as some sort of small gesture I could make to help, and then realized that this kind of special treatment would have pissed Gen off.  To be honest, I don't recall many more details of the weekend beyond a few snapshots. What I do remember was the poignant mix of feelings of how tough and inspiring it was to be with Gen as she put on a brave face and played games with us while she was so tired and in pain.    

And then I was back home. Back to classes and writing briefs and hopping on flights for interviews.  Perhaps I don't remember the details of the visit well because I couldn't dwell on them as I entered back into my 'real world.' I was flying thousands of miles while Gen couldn't even move a thousand inches.  My dad somehow managed to handle the transition from the solitary room to his demanding life outside those walls with grace. I was not so good at it. Despite my inability to fluently span the two worlds, I'd like to think that our visits and calls helped Gen break through the isolation to the outside every once in a while. To this day, I have no idea how she managed to do it in the end.

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So this is Gen again. Reading these posts from my family really give me a different perspective. What I remember from our game day was joy and happiness (and competitiveness). It was amazing how much better I felt just because all of my sisters were with me. I have to say that laughter is truly the best medicine. And even though they may have been shocked to see me in my somewhat decrepit state, they never let on and acted as though I was normal. And I think that was the best thing they did for me during their visit.

View From Afar

Throughout my posts, I've mentioned my mom, my dad, and Mercedes a lot. But the thing is, they weren't the only ones going through everything with me. They were just the ones that I had close proximity to. At the time, my sister, Carina, was pregnant and my sister, Brandan, was in law school at UT. My parents and Mercedes apparently sent them daily updates of how I was doing and what was going on (unbeknownst to me). But they had their own view of the events- a much more distant view.

Finally, in December, Carina started having contractions (or what she thought were contractions) and my mom flew out immediately to be with her and to be at the birth of her first grandchild. However, the contractions ended up being a false alarm and my mom ended up staying with Carina for two weeks until the baby came. And I hate to say this, but I was selfish. Mom was the one person I wanted to have near me at all times and she was gone for what felt like forever. I don't think I really expressed this out loud at the time because I didn't want Dad, Mercedes, and Matto (my grandmother who was there to help) to feel hurt. But on the inside I just wanted her all to myself. I was mad at Carina for taking her away from me. Now, I look back and I hate that I was angry. I mean, when I give birth to my first child, Mom had better be there because I'm going to be scared out of my mind! Clearly, Carina was in much more need of Mom than I was. But here is Carina's point of view of my transplant experience so far:

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So I have to admit that I did not read Gena’s blog until now, when she asked me to guest blog on her next post. As we have all established at this point, Gena is the strongest person in our lives. When I heard that she was writing this blog I was so happy and excited for her, I feel that this is a truly wonderful thing that she is doing for herself, and for all of us. And while my family and friends have been telling me how amazing the posts are, and what an incredible insight it is into her experience, I managed to find excuses not to read them. I would see on Facebook that a new blog entry had been posted, and I would quickly scroll past it, embarrassed that I was too scared to read it. Too scared to discover what Gena was really feeling and thinking during her experiences. And while it was even harder to read than I imagined (the pile of tissues next to me as proof), I can’t help but sit here and feel happy. Gena’s right - we do have an incredible family and I’m so proud to be a part of it! And Gena is an absolutely amazing person, and I’m so proud to be her biggest sister. So here’s my version of events - a perspective from outside the hospital room.

I think to accurately describe how I saw all of this go down, I also have to back up for a second. The first few blog posts I remember pretty clearly. But reading about Gena’s experiences after moving to Texas were really interesting and somewhat of a revelation for me. I left for college in 1997 when she was only 7! (and yes, I’m old). And we didn’t live in the same city again until she started at UT in 2009 - twelve years living apart. I of course heard about everything that she was going through, and would visit as often as I could. But I wasn’t exactly living through this like my parents and younger sisters were.

My most vivid memory of the whole ordeal up to this point in the story is the actual transplant. I was 5 months pregnant with our first child. Like the rest of my family, but I think to an even greater extent, I felt that I had been helpless to do anything to help Gena. I wasn’t a match for her bone marrow, I didn’t live with her so I couldn’t help with any daily motivation. I didn’t live in Cincinnati so I couldn’t offer up a homebase. But I thought to myself, I could at least BE in Cincinnati for the transplant, and support everyone as best as I could. I remember feeling somewhat sheepish as I visited with Gen in her hospital room before the big event. Here I was: married, pregnant, with a good job and a happy life. And as she’s described with painful clarity, she was stuck with this situation. And it was so unfair, why her?! I remember her optimism at that point, and I was so impressed with how incredibly brave she was.

Anyway, back to the story. For some reason I most remember being with my parents that day, particularly my mom. We were all back and forth between Mercedes’ recovery room and Gena’s room, but Merce was pretty out of it and I didn’t get to see Gena as much as my parents did. Here is my mom with two of her children going through extremely difficult procedures. One fighting for her life, the other undergoing an intensely painful procedure to save her sister. I remember standing in the waiting room while Merce was in surgery. Hearing the news about the blood in her stomach. Mom almost in a panic but somehow keeping it together. Me trying to comfort her. And then we saw Dr. Filipovitch. The doctor took one look at my mom and pulled her into a huge hug (and anyone who knows Dr. Filipovitch knows that she is not generally the hugging type). Mom pretty much collapsed into her, completely spent and scared out of her mind. It’s bringing tears to my eyes now. It was one of the most touching experiences I’ve ever seen, and exactly what Mom needed at that moment.

Skip forward 4 months. Gena is back in the hospital dealing with her GVHD, depression and pain. We are all so worried about her, me from afar, getting email and text updates daily from the faithful crew in Cinci. Then I go into labor (or at least I thought I did). I call my mom in a panic - I’m selfish and I’m scared and I want her by my side! She decides to fly into Austin the next day to be with me. Only by then we’ve discovered that it’s false labor and I’m already back at home by the time she lands. Of course, selfishly I’m so happy to have my mom with me. She’s been in lock-down with Gen for months. Surely I thought, I’ll be in labor again within a day or two and then she can go back to Gena. Nope. Two weeks go by before the actual event occurs and Sophia arrives. Those two weeks I know were torture for mom. (And I’m assuming for Gena). I knew mom wanted to be there for the arrival of her first grandchild, but I also knew in her heart how badly she wanted to be back with Gena and how scared she was. She managed to keep it all pretty well hidden. But after reading the last couple of blog posts, it really brings the daily struggles of that time into a much sharper focus. And makes me appreciate even more the sacrifice that everyone made at that time - mom being away from Gen, Gen allowing mom to leave her side for more than 2 weeks! Dad stepping in and being the daily caregiver, Merce stepping up her efforts even more than usual. (And a shout out to Brandy and Jason for keeping me sane here in Austin). I know this memory isn’t exactly about what Gen was going through. But it’s how I experienced this time in her life.

I know we’re not quite to this part of the story yet - but I just have to say that it’s wonderful to finally feel like I can be a part of Gena’s life in a regular way now. I’m the only family in Austin with her at the moment, and I finally get to be the one helping Gena whenever she needs it. (Although, as everyone already knows, she’s actually the one helping me out on a regular basis!) Thanks for writing this blog Gen, I’m not scared to know what you’re thinking or feeling any more, and you’ve made me a stronger person by sharing all of this with us. I’m just happy to be a part of the story. I love you.

Another View

Like I said before, I don't remember a lot of what happened. And I guess it's about time I found out. So here are Mercedes, Dad, and Mom to fill in those gaps. I'll admit this is a long one, but it's great.
NSFW (because you will probably cry)

Mercedes:
Wow, that was the hardest blog entry to read, Gen. I forget how awful that time in your life was. I think we all try to block it out from memory, because It was miserable for all of us. I was a busy intern, and I remember working in the NICU at one hospital, then driving over to children's afterwards to see you before going to bed. I would go to the Wendy's AND mcdonalds (mcdonalds fries and Wendy's nuggets) to try to entice you to eat something. It rarely worked. It was an exhausting time for all of us, and also depressing. It was so hard to see you like that; not just sick but lifeless. We tried everything we could think of to inspire you, to get our Bean back, but it was like you had disappeared. It was really scary, to be honest. I remember at one point, the doctors worrying that you weren't going to make it, because you had lost your will to keep trying. That was terrifying. I'm pretty sure that's when the psychiatry "team" was called in. A daunting task for them, in my opinion, because for as tiny and frail as you were back then, you were pretty intimidating. Not saying anything, just glaring at everyone. It was a very effective way to try to shut everyone out. I remember watching the Texas vs OU game in your hospital room that year. I would be shouting and screaming at the tv, and you would open your eyes and glare at me to shut me up. That was frustrating, because it was such a good game and I wanted to share it with you, but you didn't care about it, at all. I remember mom and I leaving one weekend for Carina's baby shower. That was the hardest decision to make, because you were still so low and we felt like we were abandoning you. But dad stepped up and made the most of the weekend, helping you dress up for Halloween. Dave even brought in flame-free candles and fake pumpkins and you had the nurses and staff trick or treating in your room! I'm sad we missed that, but it seemed like good bonding time for you and dad. Anyway, that was definitely the hardest part of this process in my opinion; thank god we are so far from that place now! 

Dad: 

Gena asked us to be honest in writing this. So I'll set the tone and start by admitting I cry a lot when reading her blog. Actually crying as I write this (people on the plane next to me probably wondering what emotional movie I must be watching on the iPad). But I am oh so proud of her for doing it. And I'm so honored to be asked to contribute.

If I can, I'll back up to a little earlier in her journey just to lay some foundation for my entry. In some ways, I have always known with absolute certainty Gen would make it thru all this - I think that certainty was born of her Spirit and Sense of Purpose, which has been there from day one of her illness - you could always see her thinking "Ok, let's get thru this!!".

And while I never lost faith in her ability to do it, there were times early on (some of which she has covered) when I did have to take a deep breath as we pushed forward: at initial evaluation when the doctors start by saying she has a 10+% chance of dying from the procedure; when she was identified as having a heart condition complication; when I'm driving us at 6:00 in the morning to the hospital in Cincinatti to check-in on day one of the whole process and my mom and Brandan call from Texas and tell me Gena's cat literally just lay down and died (a secret I kept for the next four months from Gena, Val and everyone in Cincinnati). 

And then we came to the period she is describing now in her blog. I still believed absolutely, but it made those dark days in her room tougher.

In some ways the events of this time seem a little cloudy now, probably a self defense mechanism as I don't want to remember the details.

My overall feelings and rememberances at the time: Bravery, bravery, bravery; Helplessness, helplessness, helplessness. 

Bravery - I have never seen such bravery - in the face of pain and depression. Mostly by Gena, silently, moodily, stoicly soldiering through, but also by Val and Mercedes, coaxing her along and through it. I came to understand clearly the expression "strength of a woman".

Helplessness - that was all me. I couldn't take the pain and sickness from her or for her, all I could do was put cold packs on the bruises when she fell or bumped something, hold her head while she threw up, carry her to the bathroom when she was too weak to walk (actually it was more of a shuffle when she could).

But mostly, as I was traveling a lot at the time, I'd fly in Friday's and try to spell Val to get a few hrs away from the hospital and a shower, before I'd have to fly out again on the Mondays. And while I felt like somewhat of an accessory to the events as Val was about the only one who seemed able to channel Gen during these months, I was so eternally grateful my partner was so strong and able to be there for her. 

But now a more specific anecdote. 

For those few months we lived in that dark room, with almost no sounds but the monitors (those damn monitors). As Gen's GVHD progressed, we started to see the effects of the life saving high dose steroids (which we discovered years later also have huge downstream implications). Gena started to take on the appearance of an Egg on Stilts (Gen, you asked me to be honest). She was completely bald, but as her muscles (arms and legs) shrunk to nothing, the steroids made much of her head and body tissue swell. So while at one point I could get the fingers of one hand around each of her LEGS (the stilts), her body and head took on the shape of a human egg. (For those who know me I'm not a large person so my one-hand grip is maybe 2" diameter - that's how skinny her legs were). But as she started coming back to us slowly, and would raise herself up in bed on the stilts, every day I would think how absolutely beautiful she looked. 

Then in late October came Halloween. She was just starting to emerge from her cucoon, so Dave and Mer decorated her room with ceramic pumpkins (no real ones allowed - infection threat) and battery powered lights. And she and I dressed for the occasion. Val and I had bought costumes. As Gen was still pretty moody (she claims the steroids), we bought her favorite Disney princess outfit and a bumble bee alternative (all black and yellow stripes, wings and bouncy antenna). To my surprise she picked the bumble bee. I was the old hippie (little round glasses, fringe vest, mustard bell bottoms). We dressed, the bumble bee egg on stilts and the hippie, and went off to PT for a strenuous workout with her therapist team, going up and down two steps, with a little help. Once again, it was one of the most beautiful sights I have ever seen. I have the pictures to prove it (but Gen, promise I'll never show them). 

Rambled on way too long, but before I go I must admit, I didn't understand her embarrassment in all this, through the depression and pain, as all I could see was her strength. In hindsight, and with the aid of her blog, I'm starting to get it. I'm still learning from her. 

I'll end simply by saying, Gena is the strongest person I have ever known.

Mom:

Dark days in so many ways. Literally, you wanted the room kept as dark as possible, but also dark down in my soul as I watched you battle the GVHD. Dad was right, we all felt so helpless.  Your coping method of withdrawing into yourself was so frightening and yet you found a way to share your pain with me. We communicated through touch and with our eyes.  No verbal communication.  How you kept your patience with me as I fumbled around trying to guess your needs is astounding.  But eventually, we found a way to become one.

Leaving you for any length of time was almost impossible for me.  But showers must be taken and although shower stalls were provided for parents at the hospital, I was so frightened of picking up some disease that I would rush to Mer and Dave's home (about 20 minutes away), bathe, change clothes and rush back (I actually took extra time on weekends when Dad was with you to wash my hair :).  Dad or Mer or Dave would fill in for me while I was gone, and although I tried to keep my time away to under an hour, it must have felt longer to you because upon my return you stared at me and communicated with your eyes "why were you gone for so long?"

Living in the dark had it's amusing moments, too. All the hospital rooms were set up in exactly the same way - bed against that wall, sleeper sofa by the window (and directly under the AC vent!), nurse's station against the opposite wall etc.  Within the first few days of your arrival back on the BMT floor, you determined that this set up was not functional and had us re-arrange everything! So when your nurses came in later to check vitals and enter whatever they needed to on their computers, etc, they were confused and bumping around in the dark trying to do their job! To their credit, after adjusting to the new arrangement, they agreed that your room was much more functional than any other room.
I have to give so much credit to the majority of nurses that attended to you during your stay.  Not only did they put up with your interior design inspirations, but many of them had suggestions for relieving your pain and making you more comfortable, all of which came from their years of experience on the BMT floor.  Your Head nurse, Ann Marie, at first seemed a little brusk to us, but her insights and suggestions on how to cope, not the least of which was telling us to ask your docs for marinol to help with pain and appetite, added a dimension to your care that we could not receive from your doctors alone. Not to take away anything from your doctors, they were the best in the nation, but your nurses were there "in the trenches" with us, and their experience was invaluable. I'll leave it to you, however, to talk about the nurse you fired...

It is human nature to share what is going on in your life with others in a similar situation. At the hospital, parents naturally gravitated to each other to discuss what they and their children were going through in the kitchen/meeting rooms provided for us. Initially, it was a learning experience for me. Many of the parents had been there for many weeks and/or months, and they shared their knowledge. Every night blood was drawn from every patient and every morning the results were delivered. I quickly learned what to look for - platelets, red blood cells, white blood cells, t-cells etc. etc. Progress was so slow, that, incredibly, the morning results became a ritual that we anxiously awaited, to see if your t-cells were behaving any better or your platelets went from 7 to 8 (normal is around 100). This would give us a clue as to what kind of transfusion you would receive that day - platelets, blood... As I got to know the parents better, their stories of what they had gone through with their children was horrifying. You had your procedure when you were as healthy as you could possibly be.  Most of the other patients started their transplant journey at their lowest point. I began to dread spending time with the other parents, my own defense mechanism jumping in - how could I give more of myself to comfort these mothers and fathers when I was totally drained caring for you? This was a time when I was not very proud of myself. I started to panic when I learned that one of the patients had gone to the dreaded ICU - most never returned. Or not seeing a set of parents, knowing that they wouldn't be back because their child had passed during the night - their room being prepared for the next patient. I bragged earlier about the nurses caring for you, but now I have to brag about your case manager, Laura. So young and yet so wise, she saw what I was going through and gave me very tough advice. Do not become close with the other parents. It sounds cruel just typing this, but it was the best advice I could receive. You needed all my attention, love, time, encouragement. I mentioned Ann Marie earlier, and how we thought she was a little brusk at first - she had to be. Watching over and caring for these patients on their last attempt to regain their lives is mentally and physically exhausting.  I could never do it.


We found out many months later that of the 9 patients who received BMT's when you did, you were the only patient to survive. That should not be a reflection on the BMT program at CCHMC. Their program is number one in the nation, hence they receive the very worst BMT candidates. The ones who have no other hope than to receive a bone marrow transplant.  Also, marrow donors are not easy to come by. The fact that Mer was a perfect match for you is the exception.  There was one very young patient whose parents actually had another child for the specific reason of having a better match for their son. We, as parents, would do anything for you.

I'll admit it now, but initially I was kinda embarrassed about sleeping with you every night in the hospital.  And I literally mean sleeping in your hospital bed with you.  Most of you reading this will probably think this is a little weird, but after the first few days of sitting at your bedside, holding your hand, stroking your head, talking to you, singing to you, telling you stories, encouraging you, but eventually realizing that I needed to lay down and rest, too, it was too difficult for both of us to be separated, even by a few feet.  So we decided that I would lay next to you in bed so that whenever you needed anything I would be right there. The night nurses were so respectful, and never said a word about our arrangement. But, as in any hospital, the day starts early, so usually around 5 am I would get up, change, dash out for a minute to brush my teeth and hair (I couldn't use your bathroom because of the risk of infection to you) and hurry back for the first rounds of the day.  Generally, the first team to visit you was the pain team.  I can't say enough about the pain team at CCHMC.  These doctors were incredibly patient with you.  You barely communicated with them, and yet they persisted in trying everything they could think of to make you more comfortable. But eventually it had to happen - we got caught! I'm not sure why I didn't get up on time, or maybe the pain docs were early, but they came in and there we were, in bed together.  I tried to get up quickly, which is impossible because I didn't want to disturb you - you were finally in a semi-comfortable position, but the docs just smiled and told me to stay where I was. I confessed to them that this was how we spent every night together.  I will never forget what they said to us, "there is no pain medication that can do for Gena what you are doing for her now - the human touch is an amazing healer." So our secret was out, and the embarrassment was gone. We even napped together during the day. No one ever said a word.

Eventually the dark days passed, and you entered your second life with more courage and strength than anyone can possibly imagine. Those dark days were almost intolerable, but we came out of it together, our relationship bound forever by the tough times we shared. Was it worth it? Of course, but my oh my.......

Finally, I have to talk about your amazing sisters and and the wonderful men they married.  Mer, of course, was the lucky one and gave completely of herself without hesitation. You are your sister. Carina and Brandan, through their visits, email, online chats, were there with us all the way, sharing in your suffering and successes.  Jason, Carina's husband, has been your big brother, comforting you (or throwing you across the pool while doing cheer leading stunts) since you were little. Brandy's love, Ian, helped you through those first very tough semesters at UT, when giving up wasn't an option for you. And finally, Dave, Mer's guy, who took in the Dullum clan without a second thought and opened up his home with his then girlfriend, Mer, and through baptism by fire learned the best and worst about us.  I can conjure up images in my head of each one of my sons (not son-in-laws) sitting next to you on the couch, with their arm around you, comforting you, not with words, but by just holding you for hours.  We are so fortunate to have each of you in our lives.

But, of course, there is our main man, our glue that holds us together, who speaks words of wisdom when we need it, encourages us with his strength (that's where you get it from), and guides us gently through the maze that is life.  My partner, your Dad.