Cherishing Family

The cast comes off!

Sorry it's been so long since we updated the blog. Time has a tendency to fly when you're busy from sunup to sundown. Shaina is home from the hospital. Not feeling great, or even good, but she's home. She was hooked up to IV antibiotics and other medications 24 hours a day, going back and forth to the hospital at least twice a week to get infusions of IVIG and labwork for the past couple of weeks since she was discharged. But as of yesterday, her infectious diseases doctor has decided to stop the extra antibiotics and infusions to see what happens. We're crossing our fingers and waiting to see what her labs show next week. The cast was removed from her foot, leaving her with one very skinny and pale "noodle" leg. She still has to wear a hard boot for a few weeks, but she can take it off to shower and at night. And she can shower in her own shower, sleep in her own bed, all with her baby Sato never leaving her side (even following her to and sitting guard outside of the bathroom door).

This past Sunday morning, Shaina dragged herself out of bed to help Mom and me prepare a Father's Day breakfast for The Most Interesting Man In The World, our Diddy, the one, the only, El Jefe, a.k.a. Jeff Johnson. And while most everyone spends Father's Day reflecting on how lucky they are to have a father in their life, Shaina and I feel extra lucky to have come from the loins of such a magnificent man.

Our father has spent his entire adult life sacrificing for the good of our family. It is obvious to anyone who knows our family that our father loves each of us more than any man could or ever will love us. (This creates some very high expectations in the relationship department for Shaina and me, but that's a whole other story.) As long as Shaina, David, and I can remember, our dad has worked harder than anyone we know to provide a great life for our family (and great insurance plans for Shaina). And when he gets home from his business trips, no matter how far or long he's traveled, he's always ready to sit down with the family and make us laugh. Mostly with stories at his own expense. And these stories are mostly true. He is a great story teller. So even though this post is a few days late, Shaina and I had to give a shout-out to our favorite guy, to thank him for always being that rock that our family needs to lean on. He's the best.

Since Shaina is home from the hospital, Grandma is doing better and Debbie returned to Dallas to help, I returned to New York this week. It's a bittersweet return - I'm glad to be home to see my cat and my boyfriend and my apartment and this awesome city that I now call home, but I'm sad to leave my family, who is going through such a difficult time. But the reality is that no one knows how long Shaina will be waiting for her transplant. And wedding season is in full swing, so I've returned to the East Coast to attend some of these joyous occasions. Still, I can't help calling Dallas a couple of times a day, just to check in.

No matter how awesome the city is, or how fat and cute my cat is, or how much fun our friends' weddings are... my family is, and will always be, at the forefront of my mind. It's hard to be so far away during times like these. David is transferring back to Dallas from Denver at the end of July to be closer to the family. Dad has been trying to travel only 3 or 4 days a week instead of 5 or 6. And I'll keep making trips back to visit when I don't have things going on in New York. We're in this thing together, no matter how much physical distance is between us.

One of the most annoying things that my mother hammered into us while we were growing up was: "with very few exceptions, friends will come and go, but your family will always be there." Friends always seemed more important during your teenage years. But go figure, Mom was right. Shaina is my sister, practically my twin, my blood. She should be visiting me in New York. We should be getting into trouble together, shopping together, having babies together, going on vacations together, experiencing life together. I would do anything to take her pain and suffering from her. But I can't. So instead, I will be there for her in every way that I can as we continue this waiting game...

Nobody said it was easy

Well, we're back in the hospital again.

Shaina finished another round of antibiotics early last week, and the doctor wanted to see if she could do without them for a time. A couple of days later, a low-grade fever brought her back to his office. While she was there, they went ahead and drew labs for the second time in a week. She returned home with another round of antibiotics in tow. Unfortunately, the lab results came back that afternoon showing Shaina's liver numbers had risen drastically in a matter of days. Her doctors decided to admit her to the hospital to try and figure out what was going on.

Thankfully Aunt Debbie was still in town to take care of Grandma while Mom went with Shaina to the hospital. Debbie was scheduled to leave Dallas this past Sunday, so I returned to Texas to help. Grandma has nurses coming to the house to work on getting her strength back after a rough bout of pneumonia. So Mom and I are taking turns with Grandma at home and Shaina at the hospital. Grandma is feeling much better this week, and getting stronger every day.

Shaina's liver numbers have continued to rise since she was admitted last week. She is showing signs of jaundice and ascites. She is on antibiotics to treat any infection that would cause the low-grade fever. But with those antibiotics come additional fluids, and Shaina was starting to get very uncomfortable from swelling. This morning, her doctors performed a transjugular biopsy to get a better idea of what's happening in her liver. The biopsy showed an acute flare-up of her autoimmune disease, which could certainly explain the higher liver numbers. The autoimmune disease is likely flaring up because Shaina's immunosuppression was lowered to help her body fight the enterovirus she was dealing with this year. The Catch 22 of treating her autoimmune disease and the enterovirus continues...

In traditional Shaina fashion, the plan that has been devised to treat all of these issues is anything but simple. Tonight Shaina is receiving the first of a few strong doses of steroids to get her autoimmune disease under control, a new round of IVIG to prevent the enterovirus from flaring up while her immune system is suppressed by the steroids, and two diuretics to help relieve some of the swelling. Her sugars are high again so tonight she received insulin.

Unfortunately, Shaina began showing some signs of encephalopathy after her biopsy. It's not as severe as it was during the worst of the last bout, but she is definitely experiencing some confusion and unsteadiness. She is taking lactalose to lower her ammonia levels, but we hope that getting her autoimmune disease in check will help her liver and the encephalopathy will diminish. We're hoping. In the meantime, I can assure you that there's no way she's going to break the other foot on my watch.

long hospital nights

So tonight I'm sitting here in the hospital while Shaina gets some much needed rest, contemplating the road ahead. Will it be long or short? Will they even find her another organ before this one gives out? Hopefully the current plan of action will buy this liver some more time. But how much more time do we really have? And will she spend all the rest of the time leading up to her transplant here in the hospital, confined to a lifeless hospital room night after day after night, with little to no personal privacy, attached to IV tubes and blood pressure machines, breathing only recycled sterilized air under harsh florescent lights? How much more pain must my little sister suffer? How much more prodding will her body take? And how much more can our parents, our family, endure? So many questions that no one can answer. Yet another sleepless night.

This brings me to an ongoing conversation that Shaina and I have about her situation that she would share with you personally if she were well enough to write. Right now, for our family, life stands still. We are all trapped in this moment, held captive by Shaina's dying liver, stagnant both here in this hospital and in our lives. As Shaina puts it, right now she is simply living, she is not really alive.

To live is to survive. Shaina is breathing, she is fighting, she is giving everything she has to make it to this transplant and make the transplant work. And the rest of the family is hanging on right there with her, halting our personal lives to give all of our strength and time supporting Shaina, to help her through the hardest fight of her life. Despite the ridiculous odds against her, Shaina is choosing to fight this fight. She could have given up many, many times. But she keeps fighting because she knows what it feels like to be alive and she wants with every fiber of her being to feel alive again.

Feeling alive is to wake up in the morning and not hurt. To be able to walk your dog outside and enjoy with her the warmth of the sun on your skin (or fur). To be able to cook a delicious meal with your family and friends and sit down together to savor it. To ride down the highway with the top down and the radio turned waaay up. To feel your feet in the sand and smell the salt of the ocean. And as Shaina once said, to have your Dad come in your room and put on a great jazz record, turn it up loud and watch him live every note. It is these experiences that make you feel alive. To feel love, passion, companionship, heartache and sometimes, just to have a belly laugh. To feel alive is to be moved. It is all those feelings and moments that make life worth living. When you're stripped of all of these things, and you're left struggling just to survive each day, you realize what is really important in life and how fortunate most of us are to experience the beauty all around us.

Life is so short. If you have your health, then you have the ability to live your life in a way that brings you great satisfaction and joy. Find out what it is that moves you and give to that everything you have. Enjoy getting caught in the rain. Cherish time with friends and loving family. Explore new cultures, hobbies and challenge yourself because you can. Because you have limited time on this earth to be the most that you can be, to do whatever it is that makes you feel truly alive.

Shaina doesn't want anyone's pity. She wants you to know her story and find inspiration. She wants you to be happy. And loved. And gloriously alive every single day. Her struggle has taught us that you can't take one moment of life for granted.

That's what we talk about from time to time, as we pass the hours in this hospital room or another nearly identical to it. Times are hard now, maybe harder than they've ever been, but Shaina has the will to get back to a healthy, happy place again. And her strength enables all of us to keep fighting along with her. We will get through this together; what doesn't kill us only makes us stronger. And so much more grateful.

The Waiting Game

Sato rides on Shaina's wheelchair

After a couple of weeks in Dallas, Shaina was stable from an encephalopathy perspective, so I returned to New York to take care of a few things here (my fat, needy cat, for one). Of course as soon as I left town, Grandma’s COPD started flaring up and she’s been feeling quite ill.  Thankfully, Aunt Debbie was kind enough to fly out to Dallas to help with Grandma and Shaina and whatever else needed doing around the house. She has been a huge help and source of support for my mom; we're so very grateful that she took time out of her life to help the family through this difficult period. David is also in town this weekend visiting for Mother’s Day. I know that everyone, especially Shaina, enjoys having him around. (Maybe everyone except Sato. She loves him but he scares her. He has big hands.)

The infection that Shaina was fighting appeared to be gone last week, so her doctor stopped both of the strong antibiotics we were administering at home. After spending one blissful week untethered from the IV poll, another infection appeared. She has been receiving additional antibiotics at home since Wednesday.

The swelling of her broken foot has gone down, making her cast loose. Earlier this week her old cast was cut off and replaced with a tighter new one. Between casts, the orthopedic doctor took another x-ray of Shaina’s foot. The bad news is that it is still broken. The good news is that the bones are aligned, so the foot will likely continue to heal on its own. Hopefully she will have the cast removed for good in a few weeks.

Now we’re just playing the waiting game. Shaina is still going to visit her doctors at least once a week but at this point we’re in somewhat of a holding pattern, waiting for the right liver to come her way. Our goal as a family is to spend as much time together as possible while we wait. I plan to return to Dallas soon, once I get back from a wedding in Ohio.

While the entire transplant journey is incredibly difficult, you could make the argument that this indefinite waiting is the hardest part. We could have several relatively boring weeks before they find the right organ, or, like with her first transplant, I could get a call from my mom tonight telling me to jump a plane and be at the hospital in less than 12 hours. We just don’t know. Personally, I have a life in New York that I don’t want to miss out on. But when I’m here, 3/4ths of me is still in Dallas. I spend 4 or 5 hours a day on the phone with Shaina and Mom. It’s difficult to concentrate on anything else. It’s impossible to make plans for next week, let alone next month.

So we wait. Each day that we wait is another day that Shaina is here enjoying the beauty of life. My family’s top priority right now is just to be there for each other, enjoying each others company, love and support. Already on borrowed time, we don’t take one second with Shaina for granted.