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!
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.