A few days ago we celebrated a special day and on this day, six years ago, a child was born. With his birth, “regular” people became parents and even grandparents and their hearts changed forever. This child was loved and cherished. Oh little Leo, who brought joy and laughter and dug trenches of love into the hearts of many. But nineteen months later he was gone from this Earth and the hearts of those who loved him were changed forever, again.
We celebrated Hana’s heart turning six-years old. We honored Leo by reflecting on what we knew of his life and thinking of those who loved him. We felt the deep and unending gratitude of the choice Leo’s parents made to donate his heart that saved Hana’s life. I always marvel at how parents, in their deepest and darkest grief, can be so selfless to choose organ donation to save another life of a completely anonymous stranger. I have so much respect and gratitude for them.
We made homemade ice cream and lit six candles and sang “Happy Birthday” to Leo. Hana blew out the candles and declared (again) that “Leo is my best friend”.
You can see and hear more about Leo and Hana’s story by watching this video.
Hana had her annual Cardiac Catheterization/Biopsy recently, on Wednesday. This is different than the other times she has had to go to the Cath Lab because once a year they go into the left side of heart as well (they usually just go into the right side of the heart) and measure pressures and look at her coronary arteries. It’s just too risky and invasive to do it every time, especially when the main thing is to get a biopsy of the heart to check for rejection. This is a much longer day at the hospital because Hana has to remain flat for four hours after they remove the catheter from her leg (groin area) and so she is sent to the Short Stay Unit after her recovery in the PACU.
It ended up being a traumatic day. We started off with a blood draw for some medication/drug tests that are timed and needed to be done early in the morning. Typically they try to draw these labs in the Cath Lab when they are placing an IV but the timing of her surgical procedure was just too late today to get the blood drawn for a couple of these important tests. Hana has been doing AMAZING with blood draws lately. She impresses everyone in the lab with how well she does. This was not the case today. I don’t know if the phlebotomist was just having an off day but it was terrible. She was moving the needle around in Hana’s arm and I was about to tell her to stop when she got blood flowing. But then the blood stopped and she had to poke Hana again and again it went poorly and AGAIN she moved the needle around and I was about to say something really nasty (not really but I was really pissed) but then the blood started flowing and I just wanted it to be over for Hana’s sake and her watching me get mad at someone in that situation I don’t believe helps her. I’ve never had to draw blood but I have had someone move a needle around in my arm trying to get blood and I almost passed out. It’s awful and it seems like maybe it is a bad practice, but what do I know?
Then, things go smoothly until its time for Hana to take her pre-med, her versed, to help her relax when it is time to get the gas mask to start her anesthesia in the Cath Lab. The gas mask is another very traumatic event and it has not gone well for Hana, ever. It has always been a struggle and eventually they just hold her down and put the mask on and it is awful to watch but at least with the versed, she doesn’t remember any of it. But oral versed tastes awful and Hana is older now and knows how to refuse but not old enough to understand how it helps her. She was curled up in the bed, hiding her face with both her hands over her mouth. Last time I promised to let her have her oral Nystatin right after the versed to help “chase away” the taste, but this was not a strong enough incentive and that flavoring they use for the versed just doesn’t cover the bad taste enough to convince her. So, she didn’t take it. A Child Life Specialist was there to help try other things to help make the gas mask seem less scary and that seemed to be working really well and so off they rolled to the Cath Lab, playing a game of breathing through the gas mask (not hooked up yet) and blowing out candles on a birthday cake. As I learned later, her comfort switched the instant they switched her from the hospital bed to the Cath Lab table and certainly much effort was made to comfort her but they could not coax her to allow the gas mask so they had to resort to holding her down until she took two breaths. Have you ever had someone hold you under water when you needed to breathe?
Her Cardiac Catheterization seemed to go smoothly and was uneventful as far as I know. She seemed to get out really quickly in the time it takes for me to get some breakfast, chat with two different groups of people I know that I ran into in the hospital, and to make a couple of phone calls. Hana was still very out of it in the PACU when I got there. They did her echocardiagram as she was waking up. She was still very sleepy. Then she was moved to the Short Stay Unit. We spent time watching movies, playing with stickers and she finally got to eat and drink. I have a bag of “tricks” I brought to help keep her occupied but beside lots of different stickers, she really just wanted to watch Octonauts. Her transplant NP came in and we discussed various things including her heart pressures, which were within normal limits for a transplanted heart. Biopsy results take another day.
After her four hours of being flat, the nurse came in and checked her out and then helped me sit her up and get her in my arms so I could carry her to the bathroom because she said she had to go. I sat her on the toilet and stepped back and saw lots of blood and more coming. I shouted for the nurse (the nurses station was right outside her room) and started to pick her back up to get Hana back in bed and the nurse came in and took her the rest of the way. Then two more nurses came in and they held pressure on her catheter insertion site. They got the bleeding to stop, cleaned her up, changed her sheets, and called the Cath team. They said she probably had a small blood clot that was keeping blood from oozing out and when she finally moved, it shifted and then everything started bleeding. I had blood all over my zip up jacket and some on my jeans. The nurses remarked at how calm Hana remained. I like to thing its because I was calm and the nurse all responded in a calm way. But I know it freaked her out a little bit too.
Hana had to go back to being flat for awhile. I guess this was good because it gave me more time to talk to several other people who stopped in the room including the Child Life Specialist and the anesthesiology fellow. The Child Life Specialist and I talked about what happened in the Cath Lab, strategies for next time and she went off and collected an awesome bag of medical play supplies. The pediatric cardiac anesthesiology fellow, who is almost done his fellowship, chatted with me for a long time too and he was upset by how much trauma Hana had to endure with the gas mask and we came up with alternatives for next time as well. In short, he does not think it would be good for Hana to attempt the mask again next time without a pre-med.
After about 90 minutes the nurses slowly started getting her up. She said she didn’t have to go to the bathroom (she never got a chance the previous time!), but I was pretty sure that was just because she was now scared to go. She walked to the bathroom like a pro and did fine. I will also say by this time she was really close to being back to her normal, spunky self so she was cracking me up a little bit at the same time. We managed to get discharged and to our car at 5pm. We got home at 6:30pm about 12 hours after we had left.
Later in the evening, I caught Hana horsing around too much and she had a little more bleeding at her catheter site so we had to change the dressing they put on and she did not like that so she was good about calming down after that. The next day I thought it was okay for her to go to school, her bandaid was free and clear of blood, but she did come home with a saturated bandaid and some on her underwear so I changed the bandaid and cleaned it and I ended up calling the cardiac Cath team as per the instructions I was given. They were not worried. Hana was a little worried.
All in all, I think we have trauma to work through. Hana is such a trooper and so resilient but I never want to take that for granted. I think in the coming days we will need to get some of this out, however that looks. And can I just say, for a moment, I know Hana is enduring all this, but it’s a little hard for me too and I’m always surprised at how exhausted and drained I am after these things. I seem to hold it together just fine, but the moment I get to “relax” I really crash. How many days were like this after Hana was diagnosed but we were at home or when she was in the hospital? How many days did we not have the chance to “relax” or “crash”? Or recover? There were plenty of uneventful days in the hospital but there were also plenty that weren’t, at all or were just plain terrible. And there was never really an uneventful day at home, it was a round-the-clock job. It was like being in survival mode all the time, for years. I think I still operate that way, a little bit, just out of habit.
And as for the results you have all been waiting for? Hana got a big fat ZERO rejection for her biopsy results! We are beyond thrilled! Her next biopsy is in six months!
Also, I wanted to mention that I promised two public updates a year on how Hana was doing. This is the first and I anticipate the next one will be after next biopsy in six months. If you want to access updates between now and then, subscribe by email to the blog and/or join the Hana’s Heart Facebook group.
It is already August! There are Big Changes coming both in Hana’s life and to this blog so keep reading to find out more. It has been a good summer. One of the things that has made it great is we got to go on vacation! Our summer vacation was centered around going to the Donor Dash – a 5K run/walk in Denver that honors and celebrates organ and tissue donors. Hana’s heart donor, Leo, was from Colorado and his family attends the Donor Dash every year. When I say his family, I mean extended family from a day’s drive away make the pilgrimage to Denver to honor this little boy’s memory. So, this year we decided to attend as well. My parents, two of my sisters and my brother-in-law’s family all attended as well! There were over 50 people on the “Leo’s Pride” team! It was really, really special to be a part of it.
Our summer trip started off by driving from San Francisco to Breckenridge, Colorado via Utah. We spent a week in Breckenridge with my family and then went to Denver for the Donor Dash. After that we drove to Pittsburgh and spent some time with Paul’s family. After that, Paul drove our car all the way back to San Francisco and my parents came out to Pittsburgh and picked up me and the girls and we spent a couple of weeks at their house in eastern Pennsylvania. I feel very lucky that we were able to do all of this and grateful to Paul for holding down the fort back at home while I took the kids to lots of fun places.
But now we are back in San Francisco (and glad to be together again as a family!) and although the weather has been surprisingly nice for August (it is usually cold and very foggy) it feels like our summer is really coming to an end. At the end of the month, Hana will have her annual biopsy. This means that in the Cath Lab they will use the catheter to go into both the right and left side of the heart, measuring heart pressures, taking a biopsy sample and looking at her coronary arteries. Just thinking about it gives me a lot of anxiety about all the “what ifs” so I will just have to keep working on stopping those thoughts in the next couple of weeks because they serve no use. For now, I’ll just focus on keeping Hana healthy so nothing, like getting a cold, delays her biopsy.
So, now for the Big Changes! First, Hana turns FIVE in a week! Second, Hana starts KINDERGARTEN in a week too (on the same day, actually). I can hardly believe it. My heart might break but I think it will be so fun for her. The school is very close to our house, only a block away, so that is really nice. It will be a big adjustment for everyone!
Finally, I am making a big change to this blog. In order to give Hana the opportunity to have a somewhat “anonymous” childhood we have decided to limit what we will share on social media and what we make available online once Hana turns five. Actually, this was something we had decided on when she was born and when she got sick we decided she/we needed all the love and support we could get and we decided to forgo that. We opened up our lives, Hana’s life to all of you. We do not regret that at all. But we feel that Hana deserves the chance to decide what she wants to keep private and what she wants to share, especially as she gets older. Until she can understand what it means to share your life online we will just limit the sharing until she is old enough to decide.
Now, this doesn’t mean that we are suddenly shutting you all out! We will still post updates and pictures but the posts will be password protected. All followers of the blog by email (you receive the blog post as an email) will be emailed the password and members of the Hana’s Heart Facebook group will be given the password. For all the followers of this blog but not by email, I’m sorry, for now I’m not sure how to share a password. If you know, tell me! And if you are a WordPress Whiz and want to suggest another way to protect privacy, please let me know! In addition to all of this, we will still post two public updates about Hana a year (we may still post about events like the Summer Scamper, Donate Life Month etc.). Also, and I hope I never have to do this, but if anything were to really take a turn for the worse than we would certainly reconsider this plan. In other words, no news is good news.
You, readers, supporters have all been a huge, tremendous and powerful force in our lives, in Hana’s life. We are eternally grateful from the bottom of our hearts. It has been a movement that has changed us forever. It has been a joy to share all of this with you. Thank you for sticking this out with us!
Last month we had the great honor of meeting Hana’s Heart donor family! Before I get more into that I just want to give a quick update on Hana. I know many of you that follow this story also follow on Facebook or Instagram so you probably already know all the latest! Hana had her follow up biopsy done, after her grade 2 rejection, and it came back 1a – a good result! They treat this as “no rejection” so we were feeling very relieved. It was a stressful couple of months. Hana seems to be doing very well on her new immune suppression medication, everolimus and she is not getting any mouth sores which is a very common side effect. She was so incredibly brave and started swallowing her everolimus pill (before we were crushing it and mixing it with water right before she took it twice a day). She earned herself a trip to Children’s Fairyland in Oakland, a deal I made with her if she started swallowing her pill.
Hana’s lower GI issues have greatly improved but are still not “normal” so we will see, but we will definitely take “greatly improved” over what she was dealing with before we switched her medication. She was complaining of her stomach hurting, which can happen when someone is on steroids. It didn’t seem to affect her much except that she would complain from time to time so I didn’t worry about it too much. We are tapering off her steroids so I figured she wouldn’t have to deal with the stomach pain too much longer. But she seemed to be complaining more and more and not just after eating but also first thing in the morning, before she got out of bed. Since stomach pain was her only sign of her grade 2 rejection in February, the transplant team wanted her to get blood work and to come in so they could check her out and see her echocardiogram. Everything checked out fine! It was quite a relief! We talked about any stress she might be under or any changes and how the stomach was often “the mind’s eye”.
They also thought that her stomach might not be feeling very good from taking so many medications and switching to pills could greatly improve that. So, since she was doing so well taking the everolimus pills they switched two more medications from liquid to pills. She took them like a champ. I am so proud of her! Seriously, we are also VERY HAPPY to have less liquid medications to deal with. This means less syringes. This means less trips to the pharmacy, actually we can now get ALL of her medications via mail order, so NO TRIPS to the pharmacy. It also means I can prepare pillboxes for the week and the rest of the liquid medications I can draw up a week’s worth at a time. There is just one medication that I have to draw up every morning. It is a huge game changer. If you’ve never had to deal with multiple liquid medications over a long period of time, especially ones that are compounded, expire quickly and need constant oversight, you might not be able to fully grasp what a big deal this is to our daily lives. But it is HUGE!
By the way, Hana has barely complained about her stomach since switching some of her meds to pills! Hana also celebrate her THIRD HEARTVERSARY! We are so lucky and so grateful.
In other news, we went to France for a week in early May. It’s a long story and one that deserves its own blog post, but it may be one that is better told in person. Some stories are just like that.
Somewhere in between going to France and getting Hana’s checked out because of her stomach pain, we met Hana’s heart donor family, the Bibler family. Dave and Kelly drove out to California with their daughter Aubrey. They stayed with Dave’s aunt and enjoyed many of the wonderful things the Bay Area has to offer. A couple of days after their arrival we were able to meet them down at the hospital at Stanford. When the Lucile Packard Children’s Hospital foundation got wind that the Biblers were going to be in the area and we were going to meet they started talking about doing an interview/filming of it to help promote the Summer Scamper a major fundraising event that supports the important and life-saving work being done at the hospital. It also is a great piece about the importance of organ donation.
Paul, Hana, Corrina and I met Dave, Kelly and Aubrey at the hospital. We got to show them around much of the “old” hospital – where Hana went while she was on the Berlin Heart. Two cameramen and a sound guy showed up and interviewed Dave and Kelly together and then me. My only regret is that they didn’t include talking to Paul. My understanding is that it was going to be a “mom to mom” type of story so, as you will see in the video, its not quite like that. It is still a GREAT video and Paul is in it, he just doesn’t get a chance to talk.
It was amazing to meet the Kelly and Dave. Now that I have met them, it feels kind of like I’ve always known them. We were able to share many great moments, both on that day at the hospital and later in the week when we saw them again. We had a real chance to bond! We are so grateful to them! They are incredible!
Today, I want to share with you Leo’s story, Hana’s heart donor, as written by his mother, Kelly, about six months ago. Before I do that, I want to give a quick update on Hana. After Hana’s grade 2 rejection after her last biopsy, Hana has started on a steroid and all the associated medications required when on long term steroids. She also changed one of her immune suppression medications to everolimus. We really need a follow up biopsy to check her rejection status, which is important after having rejection AND changing immune suppression medication. Unfortunately, Hana’s biopsy keeps getting rescheduled because she has been getting colds, preventing her from being able to undergo general anesthesia. We are getting down to the wire now on how long the transplant team is comfortable waiting for this biopsy to happen, so we are isolating ourselves to keep the germs away. She is going to be evaluated by the transplant team and someone from the cardiac anesthesia team on Tuesday to see if she can safely undergo anesthesia and have her biopsy done on Wednesday! So, hopefully there will be an update about that later this week!
And now, Leo. The little boy who saved Hana’s life. We get to read his story, get to know him, his parents and their incredible decision to save Hana’s life. This is on the eve of the start of April, Donate Life Month. So, if you aren’t registered to be an organ donor, maybe this can be your inspiration to register, in honor of Leo. (And then, tell us about it by leaving a Comment on this blog!)
“Leo’s story began on October 28, 2014 in Fort Collins, Colorado when he entered this world and changed our lives forever. When he was born, he was absolutely perfect in every way and from his first breath, Dave ( his father) and I knew he was something special. From the very beginning, he was hitting all of his milestones and growing exactly as he should. He was even ahead of some kids his age when it came to walking ( he started just shy of turning 11 months) and from then he was running everywhere he would go and one of his favorite games was chasing our cat, Buddy. He also loved “sumo wrestling” with his dad, playing with trucks, playing in water and chasing our dogs with the broom. He was a handful but he was also so incredibly loving. He could always tell when Dave or I were having a bad day and he would stop to give us a hug or pat his dad on the back like “ it’s going to be ok Dad”. He was so intuitive and looking back, he seemed so much wiser than kids his age and that he knew more then we could ever recognize. It was almost like he knew his time here on Earth was going to be short so he made the most of every moment he spent here.
Leo had a condition called Dravet Syndrome, that he was diagnosed with post mortem after we did genetic testing. It started out as a seizure that occurred right after his 6 month vaccinations, that most likely was triggered by a fever NOT the vaccinations (Dravet is a disease that develops in utero during development when there is a deletion in one of the sodium channels). The doctors at that time believed that it was a fever that triggered the seizure and that he was going to be totally fine. Another 3 or 4 months passed, seizure free and he had another one at his babysitters. This one was not triggered by anything, totally out of the blue. Following this seizure, Leo had an MRI and EEG done to check for any kind of underlying disease and both came back completely normal. We consulted with the pediatric neurologists at Children’s Hospital of Colorado and they diagnosed him with “ idiopathic epilepsy” and put him on medication twice a day to try and control the seizure, which it did minus one febrile seizure, until his final one.
In the 9 months prior to his final seizure, life was normal for our little family. Leo continued being a totally normal toddler and hit his milestones as he was supposed to. We were also in the process of planning our wedding, which was to occur on May 21, 2016. We were so excited to start our lives as an official family and to have Leo as our ring bearer and walk us down the aisle. All of this changed 2 days prior to our wedding on May 19, 2016 when Leo had what would be his final seizures.
We were at my parent’s discussing plans for the wedding when all of a sudden, Leo’s face just went blank. He starting have what they call an absence seizure and we could not get him to snap out of it. We administered his emergency medication that we had on hand and called 911. The ambulance came and picked him up and rushed him to a local hospital in Loveland. While there, he proceeded to have 2 more grand mal seizures and was flown via Flight for Life to Children’s Hospital in Denver. The second seizure was still going when they got to Children’s and it took another few hours to get that one to stop. After that stopped, we thought we were in the clear until his last seizure started. That seizure lasted 12 hours and is ultimately what ended up taking his life due to the brain damage sustained. The doctor’s put him in a medically induced coma to get the seizure to stop which worked but we would never see our little guy wake up again.
The staff at Children’s Hospital Denver were amazing. They are very attentive to the families and the needs of the families. They were there for my husband and I every step of the way, they explained everything to us in detail and never sugar coated over anything. When they were concerned that Leo wasn’t going to make it, the neurologist came right out and told me that he was ‘very concerned for Leo’ . I won’t ever forget that conversation but the way he delivered those words to me was still very comforting. I think they do wonderful work at that hospital and once I think that I have the strength to return, I want to help donate to the children and families that stay there.
About a week after Leo was admitted to Children’s, we had a care conference with all of Doctors that were involved in the care of Leo. That day was the worst day of my life. Sitting in that room, and looking at everyone’s face, I knew that they were going to tell me that we were going to lose our baby. The heartbreak and pain from that day will never leave me and it’s still so hard for me to go back and remember those feelings so I’ll just leave it there.
After the care conference, we had a representative from Donor Alliance come and visit us in Leo’s room. The first thing she told us was, ‘Your son has the potential to save 8 lives’. Dave and I both broke down when she said that and it wasn’t even a question that we had to discuss. It was an immediate yes. Although Leo was young and couldn’t quite talk yet, we knew that this was something he was meant to do. Why would we say no to the potential of someone else’s life being saved when we knew that our outcome wasn’t going to change? After we said yes, they began all of the testing that needs to be done to determine if a patient is a candidate and good match for organ donation. They determined that Leo’s heart and kidneys qualified for donation and began the process of finding a match. I’ll never forget when the tech came in to do the echo on Leo to check the quality of Leo’s heart and she stopped and looked at my husband and I and said ‘His heart is PERFECT’. All I could say in response was ‘I know’.
Leo was officially pronounced on May 27, 2016. I don’t remember when they told us that they had found a match for him because those days are somewhat of a blur to me. I just know that he was taken to surgery on May 28. All they told us at the time was that they had a recipient for his heart that was located on the West Coast and his kidneys would be going to recipient in the Midwest. We were told that if we wanted to contact the recipients we could write a letter to Donor Alliance and they would forward the letter to the recipient family. At that point, it would be up to the recipients to respond. At that point, I wasn’t sure when we would have the strength to write such a letter and so for the time being, I just prayed that they surgeries would go ok and that Leo’s gift of life would live on.
Dave and I obviously postponed our wedding from May 21 to a later date. We proceeded to get married on June 26, 2016 at a ceremony in the mountains of Colorado in the same place that Dave had proposed to me. It was very important to me to share my last name with Leo so I felt that I couldn’t put off the wedding any longer than that. When we had Leo, before we knew we were going to lose him, Dave and I had decided that he was going to be our only child. He was perfect in every way and we wanted nothing more than to focus all of our energy on him. When we lost him, we made the decision that we wanted to have another child. We were meant to be parents and the love that Leo showed us was something that we were not willing to give up on. On August 16, 2017, Leo’s little sister Aubrey was born. She is such a gift and is so much like her brother, it is amazing. She does not have Dravet and is a totally healthy, perfect little girl. We are going to make sure when she grows up she knows all about her brother and what a special kid he truly was.
Last year, just prior to what would have been Leo’s 3rd birthday, I wrote a letter to the recipients of his organs. I wanted them to know that I think of them every single day and that I wanted to know how they were doing. I wanted to know more about them so that I could share their story with Aubrey when she gets older so that she can truly understand what a little superhero Leo was. I never imagined I would get the response that I would get!
6 months passed after mailing the letter and every day, I would check the mail hoping for a response. Then, on Good Friday, there was a letter in the mail from Donor Alliance! I knew that it was THE letter that I had been waiting for. I immediately called Dave and told him that he needed to come home because we got a letter. He started crying before he even got off of the phone. I have never been more nervous, scared and excited at the same time opening a piece of mail. Inside the envelope was a 3 page letter from Kathleen and Paul. I couldn’t read a single word without crying. They told me all about Hana and the struggles she had been through with her heart condition and how far she had come since the transplant. They were so grateful for our choice to donate Leo’s heart and I could feel the love and gratitude coming through. They gave us the information for her online blog in that letter and we feel so blessed and lucky that she was the little girl that got Leo’s heart. To be able to see her journey documented from when she was diagnosed with her condition until now, is such a gift in itself and there are not words to describe what that means to Dave and I. After receiving the letter, we mailed to release of information form back to Donor Alliance which would give us the freedom to speak directly with Hana’s family and remove Donor Alliance from the relationship. In the meantime, Kathleen was able to find me on social media and we connected that way, just prior to what would have been the anniversary of Leo’s passing and Hana’s ‘Heartversary’. We continue to be in contact via Facebook and it is so special to be able to see all of the updates on Hana and their family and she is able to see our family and we can check in and see how the other is doing. It’s such a special unique relationship that I am forever grateful to have.
Every year since Leo’s death, we participate in something called the Donor Dash, which is put on by Donor Alliance. We do it to honor Leo and his recipients. This year was extra special for us because we had a face to put to not only our son but to the little girl who received his heart. Kathleen had shared that they do the Summer Scamper each year for Lucile Packard and this was something that our family wanted to be able to participate in, even if it was here in Colorado. My aunt even participated in South Dakota! My husband broke his foot in June so he was in a walking boot and scooter during the scamper, so we rolled/walked during it . We were in Winter Park, Colorado at that time so we did the scamper through the forest.
Since the moment we found out that Leo’s heart was still beating, it has been a hope and a dream to be able to meet Hana. There are no words to describe what it would feel like to hear his heart again and to see Hana thriving and living life to the fullest. We get to see that every day through pictures from Kathleen but to meet them in person would be a whole different level of amazing.”
To celebrate Leo and his gift of life to Hana, our family is traveling to Colorado this summer to join Leo’s family, on the team “Leo’s Pride”, for the Donor Dash that Kelly mentions.
Tomorrow is the beginning of Donate Life Month! Please register to be an organ donor, if you haven’t already, and encourage everyone you know to register as well!
Hana’s cardiac catheterization went smoothly. Her heart pressures were good and her echo looked unchanged. Hana was really groggy from the anesthesia. When we got home she vomited all over herself. I was personally very exhausted, in large part because Corrina was up most of the night before. But today we got Hana’s biopsy results. They take a small sample of heart tissue and analyze it under a microscope for any rejection. We were hoping to get a zero or 1a result. But instead it was a 2 – moderate rejection.
This was certainly a big blow. It seems likely that Hana’s very recent stomach pain was a symptom of that rejection. Her diarrhea is probably still caused by one of her immune suppressing drugs. My heart hit the floor when I heard. So, now what? The team at Stanford decided to make some big changes to her medications. First, she is going on a small amount of steroid to knock back the rejection. Then they will see her in clinic in two weeks and will do another biopsy in four weeks. Second, they decided that now is the time to switch her off the cellcept and start a new drug, everolimus. This new drug has less nasty side affects and allows for Hana to be on a much lower dose of her tacrolimus (Prograf) which has many benefits of less nasty side affects of that drug. They are doing a big clinical study of this drug regimen right now across the country in pediatric heart transplant patients. It is currently not FDA approved for kids. It is already the standard drug protocol at several pediatric heart transplant centers. So, we shall see.
So its been a down kind of day. It feels very scary and threatening to face this rejection. But I can’t let myself go down that dark hole. It’s both not helpful at all and it really drains my energy. So, we still have drugs that have worked in the past and drugs that will hopefully work even better for the future. We have great medical staff looking after Hana’s well being. We have access to great health care. We have options. We have hope.
On another note, today was really, really hard because a very close family member, whom I don’t want to name, was admitted to the hospital and is very sick. So, that has been rough too. It’s definitely a more acutely severe situation so it feels very urgent. All of this has really wiped me out! Paul and I decided to just pretend that tomorrow is the real “Valentine’s Day”.
With this recent news, I will be posting more often. Thank you all for your continued support.
Today, February 11th, marks the 4-year anniversary that we found out about Hana’s heart. I think about that day, 4 years ago when our lives changed forever. Hana had a mild cough that had persisted over two months, and was progressively sounding worse, but not too bad. About a week before this, I was holding her and she suddenly vomited all over. Then it happened again a few days later and again a few days after that and then she was vomiting once a day or in the middle of the night. Then, sometimes, she started getting fussy while nursing and would stop after a couple of minutes and I remember her forehead felt sweaty. A couple days before she took a three hour nap which was so unusual for my difficult napper of a baby. But it was the vomiting that worried us most. The vomiting just seemed like it took a lot out of her. The night before, she vomited right when Paul got home from work and she looked terrible. She was very, very quiet and pale and I think she actually looked scared. Something didn’t feel right. But a mind has a way of explaining things away and logic has a way of quieting fears even when they should be heard.
Over the next few days, we would recall these things again and again for doctor after doctor. They would nod their heads knowingly, they had heard this story countless times. It’s a little uncanny how similar the stories are, when you’ve heard enough of them. Of course, parents think it’s something else. Even most pediatricians would think it’s something else, because it almost always is. But not this time and luckily, we got a pediatrician who wasn’t convinced it was something else. I remember hearing the nervousness in her voice when she told me to take Hana downstairs for a chest x-ray. I remember the x-ray tech looking at me after he took the image. He was solemn but said nothing. He knew that image didn’t look right. I remember the urgency in the doctor’s voice a little later when she called me back because the x-ray showed an enlarged heart. I remember crying on the phone when I called Paul to tell him. I knew an enlarged heart was bad, I just didn’t know any more than that. I remember back at the medical center, about twenty minutes later, the echo tech and the cardiologist staring intently at the image of Hana’s heart on that screen. The cardiologist asked me to wait in a room, not an exam room, just a nearby room until she came back. People had been rushing around and talking in low voices. I don’t even remember exactly what the pediatric cardiologist said – something like “she’s in heart failure”, “we don’t know yet how bad”, “yes your husband should come right away”, “yes you will definitely need to cancel your trip to Hawaii in two days”, “she will probably be in the hospital at least two weeks”, “she will be transferred out to UCSF”, “there is still a lot we don’t know… ”
I was surprised when the pediatric cardiologist walked with us next door to the Emergency Department at the hospital. She stayed until they had Hana hooked up to the monitor, my first of many, many experiences with this. She had explained that an ambulance would come as soon as possible to transfer Hana to UCSF hospital across town. It was the brand new hospital, only opened one week. The pediatrician came into the emergency department to talk with us too. She was just checking in with us and she gave me her personal cell phone number to call her if I ever had any question, I could call her at any time. I remember Paul getting there and staying with Hana so I could go outside to make a phone call (the reception in the emergency department is terrible. I remember telling my parents what was going on – it was an enlarged heart, they were transferring her to the big, prestigious hospital across town, we had to cancel our trip to Hawaii and could they let my sister know (we were going to Hawaii to visit her). My parents were sitting in their car in the parking lot outside of a restaurant, waiting to go inside to celebrate my grandmother’s 96th birthday. My dad asked if I needed my mom (the pediatric nurse) to fly out. I felt like a child – a scared, lost child who needed her mom. I always think “no” to those kinds of questions. Can Paul and I handle this ourselves? Of course we can. But should we? I croaked out a “yes”.
I remember seeing Judy and Neal through the doors of the Emergency Department. They were standing looking into our room. They would take our dog Poppy. I remember being relieved that someone local was near and ready to help. I remember watching Paul walk out of the Emergency Department with that empty stroller, so he could take it just four blocks back to our home and then meet us at UCSF. I remember texting a couple of people on the ambulance ride to the new hospital. My friend Lisa and my friend Rose. Hana was asleep in her carseat in the ambulance. I remember arriving at some back entrance to the hospital and going up to the CICU into a room no other patient had yet occupied in this new hospital. The staff was still trying to find the supply room. I remember the attending physician happened to be the head of pediatric cardiology at the hospital. She and a neonatologist worked to get IVs started and maybe an arterial line? Hana was crying and fussy and wouldn’t be still. They were having a very, very hard time even to get an IV going. Paul and I were bent over her bed for hours showing Hana her favorite book from home. We talked and whispered and sang and tried to keep her calm. It seemed very important, whatever the cardiologist and the neonatologist were doing. I remember the cardiologist taking out her phone and calling her friend to tell her she wasn’t going to make it to the big birthday dinner of their other friend that night, she had to stay at the hospital. Eventually they gave up and decided to go with the two IVs. We were supposed to rest. I remember looking down at Hana in a hospital bed and in a hospital gown with all the lines hooked up to her thinking, “How did this happen so fast? How did we wake up this morning thinking our baby was just a little sick?” I was exhausted and I wanted to sleep and yet, I didn’t. How could I sleep when my baby was like this? I remember thinking, “I hope this is the worst day of my life.” I think deep down I already knew the worst was yet to come.
That was February 11, 2015.
The flood gates had been opened and water gushed so fast I didn’t know if I would ever be able to get another breath again. The next morning, the same pediatric cardiologist, the head of her department, sat us in her office and told us that Hana was going to need a heart transplant and she was transferring her to Stanford. We were stunned speechless. Hana seemed to really decline rapidly. I remember my mom, the pediatric nurse who had spent years in the trenches of a pediatric intensive care unit, arrive that morning and within minutes she was calling my dad to fly out too – things were much worse than she thought. I don’t remember too much of that day – they were going to send Hana to the cath lab but then decided it was too risky. They decided to intubate her. We sat in the parent lounge trying to eat food our friends Lisa and Chris had brought. They got Hana ready for her life flight to Stanford. A helicopter? Really? The staff prepped us for how different it would be at Stanford. The helicopter pilot questioned me on how suitable I would be to sit in the helicopter with him. I said goodbye to Paul and my mom who were driving down to Stanford. I got into the helicopter. It floated up into the night sky. The take off was complicated because it was the first time they had transferred a patient out of this new hospital and also the air space was restricted because President Obama was arriving at San Francisco airport. Twelve minutes later we landed at Stanford. The rushed her inside and into the CVICU where a team of people were ready. I stayed out of the room because it was too crowded and busy, there was no place for the mom right now. It was late and it was otherwise very, very quiet on the unit. One of the cardiology fellows pulled up a chair for me outside the room. I sat in it and my whole body ached, it ached so bad I would have a hard time getting to sleep that night, after not sleeping for two days.
I remember trying to make a deal with God, knowing full well that it didn’t work that way. I remember thinking, “This only happens to people in the movies and those movie-parents are amazing and inspiring. Paul and I aren’t that special. We are not those parents. How is that we are now those parents that are doing this?” But our lives changed and our hearts and our minds. And those flood gates that opened? They never close, maybe they just trickle, but they never close. And that sigh of relief at the end of the day? It never comes. And that dream of “I’m going to do this crazy, hard, scary, intense thing of having and raising a child that I will love like I never knew I could love”? That dream is changed, forever. All those thoughts I had about raising a child and what it was to be a parent, they changed forever on February 11th. I can never “unknow” what I know now. There is a peace of mind that I will never know again. I struggled with that for a long time. But now I don’t even remember what it feels like to have it any more. The only thing certain is Uncertainty.
But there is more love than you know. I asked for it, I did. For once in my life, I asked for it because I knew this was more than just me and Paul and Hana. This was about people and community and humanity and love and even more. I think of Kelly and David and their son, Leo, who would become Hana’s heart donor, her angel. I think of their sacrifice and pain and choice and their love. In the face of pain, there is still love.
Thank you all, for being part of that. You have been an incredible force of goodwill and love.
And what about today, February 11, 2019? Hana is going to Forest School and swim and dance. She underwent some neuropsych testing this fall and everything came back great. They wanted to test her because she has been on cardiac bypass which can cause oxygen deprivation and sometimes they see some delays or learning disabilities. We will test her again in three years. We have been very busy. We toured some schools for potentially starting Kindergarten in the fall, although we are still inclined to wait another year. Hana is eligible to start, although she will just be turning 5 on the first day of school.
What we are battling now are Hana’s GI issues. She has had chronic diarrhea since the summer and over the past week she has been increasingly complaining of stomach pain. As a parent, it’s hard to swallow. No one wants to see their child suffering. We did some food elimination diets including dairy free and then two weeks of no sweet (no sugar, no fruit, no artificial sweetener) but nothing helped. Hana complied like a champ. She is so good, it makes my heart melt. So, now we are left blaming her one immunosuppression medication – Cellcept. There has been talk about switching her to another medication but we had to decide a little while ago if we wanted to make that switch and we decided to wait. If we switch her medication we have to do it 4-6 weeks before her next biopsy so that they can check for any rejection with a new immune suppressing drug. Hana’s next biopsy is in a couple days on Wednesday, February 13th. So now, we will have to wait until the summer when she has her next biopsy. That is, of course, assuming that Wednesday’s biopsy results will show No Rejection and she will not need another biopsy until the summer. So, maybe we should have done the switch. I don’t know.
Please keep Hana in your thoughts and prayers on Wednesday for her biopsy. We will update you when we get results!
Hana had a cardiac catheterization/biopsy on Tuesday. It was her annual study, where they go in to both the right and left side if the heart and they look at her coronary arteries. Everything looked great and biopsy results came back as 1a (which they treat as 0)! So this is all great news! Her next biopsy will be in 6 months and her next clinic appointment is in November!
In other news, we’ve been having fun with my parents here. We went to the California Homeschool conference in San Jose. We’ve finished out my first Tinkergarten season. Now, I’m on a very short whirlwind trip with a friend, my first time away without kids (except when Paul and I got away for a few days when Hana was 9 months). It’s been crazy busy, way too busy. Hana turns 4 on Sunday and next Friday we go to visit my sister’s family in Hawaii!
Thanks for all your readership and support! It means souch to us!
It has been a crazy few months. I am actually a little dumbstruck by how busy it has been. First, I decided to embark on this journey of leading Tinkergarten classes for young children. These are outdoor, child-led, play-driven, nature-inspired classes for children 18-months to 8-years old. It has been fulfilling and yet, A LOT OF WORK. Between the training, the trial classes and the preparation, I am sinking. I know this will level out after I get more experienced but for now, my head is spinning. Second, Corrina’s blood levels tested high for lead so we had to get our home inspected for lead exposure. Her levels were not very high, but still, we had to get a lot of painting, cleaning and repair work done to protect against possible lead exposure. We did get Hana’s lead level tested again (she never had any detectable lead) and it came back as nothing, so that’s one relief. Third, we’ve been preparing for our condo conversion, including our inspection. I’ll spare you the details but basically it means we are legally separating our two unit house (which was once a single-family house). This is very common in San Francisco. It is costly and timely. Lastly, is the usual recovery from vacation (this is a real thing!) and recovery from summer colds.
But enough about that boring stuff!
Hana is doing great! Memorial Day weekend we went camping, thinking the girls were on the other side of the sickness they both had right before we went. Not so. Then the coughing started for both Hana and Corrina. I ended up having to take Hana in for a chest x-ray and a bunch of other tests. Everything came back fine. Paul and I managed to not get sick although we were feeling a little traumatized from the camping trip, because it ended up being so hard with sick kids.
Hana had her ballet recital, which was really fun. If you really want to watch her two dances, you can here: https://vimeo.com/276555941
Just skip to 19:42 for her class’ tap dance (“If You’re Happy And You Know It”). And 39:44 for her class’ ballet dance (“Bunny Rabbit Blues”). Otherwise, here are a few professional images captured by the photographer Natalia Perez from the dress rehearsal.
Next, we went to our dear friend, Megan’s wedding. Hana was excited for months/weeks for Megan’s wedding! Now, Megan is very special to us because she came to visit every week while Hana was in the hospital and living at the Ronald McDonald House. It gave me some time to get away for an hour or two and it gave Hana some special time with an amazing person. Even when Hana was back in the hospital for a month with adenovirus, Megan came. We are so sad that she moved to Arizona a few months ago (good for her, but we will miss her so much).
Then, we had the highly anticipated Summer Scamper, the walk/run on Stanford University’s campus to raise money for the children’s hospital. Thank you to all who donated to the Hana’s Heart team. It was a small team this year and we really missed some of our past year’s team members. But it was a lot of fun. It was our first year doing the event after knowing about Hana’s heart donor, Leo, so that made it really special. We even had a few of Leo’s family members participate as virtual racers! One racer even made a really cool shirt. I had no idea of this until after the event (I guess I need to find more time to check my email.). We went down to Palo Alto the night before where I had gotten a deal on a hotel with a pool. We went swimming and then we went out to dinner. The next day we were able to get to the race quickly. We walked the 5K together as a family and then Hana did the fun run for 3 and 4-year olds! She had mixed feelings about it (because I didn’t run on the track with her, I thought all parents had to be off the track, yet some parents stayed, so it made her a bit sad). I did run right next to her in the grass, though.
The next weekend we went to Camp Taylor’s family camp for the first time. Camp Taylor is a camp for kids with heart disease. We didn’t go last year because I wasn’t sure how that would work out with a newborn. This year was the first year they had camp at their new facility, so it wasn’t quite what it normally is as they continue to build the camp. Hana had an amazing time. She is still talking about it and can’t wait to go next year.
After all that fun in June, Paul and I were exhausted. But then we had to rush around to do the lead work, where we had to be out of the house for a couple of days, and then get ready for the condo conversion inspection. I had to get a new phone somewhere in there. Thankfully, the lead work is DONE and the condo conversion inspection is over for the time being (let the real work begin!). My summer season Tinkergarten classes started and I’m getting in a bit of a groove with that so now we are playing catch up on everything else. This past week all of us except Paul had a cold.
We are looking forward to some more fun in our jam-packed August. My parents are coming out and we are headed to San Jose for the annual California Homeschool Conference. This is my first time going, so we will see what the homeschool landscape is all about in California. I’m really looking forward to it, as we need to make some big decisions in the coming months about Hana’s schooling. Between now and then, we need Hana to stay healthy because she has a big day coming up right after the conference, on August 13th, when she has her annual cardiac catheterization and biopsy. Then, a few days later its her birthday and then a few days after that we get to go to Hawaii to visit my sister’s family and my aunt and uncle! Please keep some positive thoughts and prayers coming Hana’s way for her cardiac cath & biopsy. We want her to be healthy and we went everything to look beautiful and come back as no rejection.
Thank you all for following Hana’s journey. We always appreciate all the support. I hope my updates can be more timely in the coming months when, hopefully, things quiet down a little bit for us!
Today, Memorial Day, is the 2nd anniversary of Hana receiving her new heart, her gift of life. Yesterday, far away in Colorado, a family, Leo’s family, was remembering him on the two-year anniversary of the day he died. Leo was a toddler, full of life, who touched the hearts of those around him in a special way. He was, of course, cherished by his parents, Kelly and David and his extended family. His first word was “Dada”. He started walking at 10-months old and quickly started running after that. He loved ZZ top. He liked to eat goldfish crackers, puffs, potatoes and BBQ ribs.
Leo had a few unexplained seizures, the first one at six-months old after his six-month vaccinations. He was admitted overnight to the hospital. Then, a couple more after that, but everything checked out fine, so they figured it was something he would outgrow and put him on medication to prevent further seizures. Then, one day in May while sitting on his father’s lap he became unresponsive. They administered emergency medication, called 911 and he was rushed to the hospital where he had a grand mal seizure. Leo was life flighted to the children’s hospital in Denver and 12 hours later his seizure finally stopped but left him in a coma that he would never come out of. After 8 days in the hospital, he was gone.
When you have a child, your heart changes forever. You are never the same person again. So, I imagine when you lose that child, your heart gushes with so much grief, it must feel hard to ever stop or slow down. Your child is gone but you are still that changed person, never going back to being that child-less person you once were and now there is a piece of you so vital that is now missing. So, in the midst of all of that, David and Kelly, Leo’s parents made the incredibly selfless choice to donate Leo’s organs. His kidneys went to a recipient and his heart, his perfect heart, came to Hana. So sweet, sweet Leo was gone but his heart beats on as Hana’s gift of life.
On this day, I celebrate Hana’s second chance at life and remember and cherish Leo’s life. The boy he was, the people who loved him so much. Please, if you can, take a moment or more and say a prayer, spare a thought, send positive vibes to Leo’s family and remember what a precious gift he was to them.
At the end of January we received a letter from Leo’s parents. We replied with our own letter a couple weeks later. Then, a week or so ago we got a call from the nurse practitioner at Stanford saying that the family has requested a consent to release our personal information, so that we can contact each other without having to go through the donor network. I sent in the release but since I had found Leo’s mother, Kelly, on Facebook, I decided to send her a message. So, that’s how we’ve been communicating. I hope in the coming months, years we to get to know the family better and learn more about Leo.
In other news, things have been busier than ever. Corrina turned 1-year! Hana successfully weaned off steroids! Hana had another biopsy which came back good, a 1a, which they treat as no rejection. Her next biopsy will be in August for her annual cardiac catheterization and biopsy. We went back to Pennsylvania to see family for a week! I’ve been doing training and preparation to lead Tinkergarten classes this summer (outdoor, play-based, child-led nature activities). Both kids were pretty sick this last week but managed to recover enough for us to go camping this Memorial Day Weekend. Now, they are settling into some bad coughing, so hopefully this too can pass without any drastic measures.
We are in the final month before the Summer Scamper which support the children’s hospital at Stanford – Lucile Packard Children’s Hospital. You can support Hana’s Heart team, especially in memory of Leo. With your help more children can get a second chance at life.