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!
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!