A Very Special Heartversary – Remembering Leo

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.

Lastly, please remember the importance of organ donation. If you haven’t already, register to be an organ donor.

Finally, Another Biopsy

Today, Wednesday, Hana finally had her follow up biopsy to the 1b result she got back in November. They wanted her to have her follow-up biopsy a month later in December but Hana was sick and so it was canceled and couldn’t be rescheduled until the end of January. We got to go to the brand new hospital, which is right next door to the old hospital. It is beautiful and new and fun for the kids. Biopsy days are always exhausting for me. Its the preparing, getting up early, packing, figuring out care for Corrina and then there is the mental and emotional drain, which is probably the most exhausting. This time, my mom was here for the biopsy. She and Corrina came with us to the hospital, which makes things easier for us.

When Hana’s biopsy was over and she was in recovery but still asleep from her anesthesia, they called me back to the Consultation Room to talk to the surgeon who did the procedure. They almost never do this for routine biopsies so I started to get really worried that things had not gone well. I sat in the Consultation Room for a long time trying to calm my fears. I had Corrina with me while my mom went back to the recovery room where Hana was waking up. After 20 or so minutes someone finally came in to tell me they had talked to the surgeon and she had to go and would talk to me later. I was relieved because I was almost positive that this meant everything was fine. But for twenty minutes I was pretty stressed.

Hana’s Nurse Practitioner came out to talk to me and was looking for a private room, which made me nervous again because they don’t do that unless they have some kind of news. We found a empty sitting area and went over Hana’s results so far. Her heart pressures are improved since her last Cath Lab procedure and are in normal range of a transplanted heart. Her echocardiogram also looked fine. So that’s reassuring. That is all good news. Her biopsy results should be in tomorrow (Thursday) so we will know if they are seeing any rejection. Then, Nancy told me she had more good news. I couldn’t imagine what this could possibly be. Unfortunately, I will have to keep you all in suspense for now. More on that in the next day or so.

In the meantime, I want to introduce you to two special boys that are the sons’ of a childhood friend of mine.27605374_10155962716568830_1905743854_o

Michael and Jon Dougherty are participating in a fundraising event through the American Heart Association. They are doing a jump rope event where they learn to jump rope, learn about their heart and raise money to help kids with special hearts. Both boys have chosen to jump in honor of Hana. If you feel moved to do so, you can choose to support their fundraisers by following these links:

Michael: http://www2.heart.org/site/TR?px=6657997&pg=personal&fr_id=3191&et=9-2w0hbcXW7w9L1KXVB1_g

Jon: http://www2.heart.org/site/TR?px=9303519&pg=personal&fr_id=3191&et=dhLUceL_IFTUNNl2ChGSDw

Stay tuned!