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.
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.
