The Donor Family Letter

Today, when my phone rang and when I saw the phone number come up, a little gulp of fear surged through me. It was Hana’s Nurse Practitioner and I was sure she was calling with biopsy results except that it seemed way to early, at 10am, to already have results. Nancy sounded cheerful and immediately said she had more good news. Hana’s biopsy result was a 1a, which is essentially no rejection. I felt incredibly relieved and said “whew!” Out loud. Her next biopsy is not until early May. We will begin to taper her steroids. We also discussed flu precautions, which has me slightly terrified this year. They had no additional precautions than the ones I’ve already implemented. Anyhow, we have reason to celebrate such good biopsy results!

On to the big news that Nancy gave me yesterday. After discussing Hana’s biopsy yesterday Nancy’s said she had more good news and then she said, “You have a letter from the donor family.” And then she handed me a plain white envelope, very thin, which appeared to have one sheet of a typed letter inside. I immediately started crying. I took the letter feeling like it was the most precious paper I had ever held in my hands.

I felt so many things at once that I can’t even really identify them all. They were just very very big emotions. Not since we received the call that there was a heart for Hana have I felt like this. I felt intense gratitude, relief, excitement. I felt the intensity of loss, grief, suffering. I even felt love and hope and desire. Of course, I did not open the letter until Paul was home. I cried on and off throughout the rest of the day. I waited. This is one reason why I did not mention this yesterday – I still had not opened the letter.

The letter was short and heartfelt. The donor was a boy, a little younger than Hana, who died unexpectedly. He had a contagious smile and was full of life – running, jumping, chasing. He was an only child. The parents said they think every day about the recipients who received his gifts and would love to hear how they are doing. We have decided that we are not going to post any identifying details that were shared by the donor family. As much as we love and appreciate all of the readers of this blog we want to respect the privacy and anonymity of the donor family.

It has been very emotional and we are still processing it all. I am incredibly grateful that the donor family reached out first. As much as I have wanted them to know our gratitude for their choice, it just never felt like it was the right time. Not just yet. Now, it feels like the right time! In a few days, after a bit more processing, Paul and I will write a reply. I hope we can somehow find that words that might begin to express how we feel. I hope we can perhaps offer some solace knowing that their son’s heart beats within Hana and explain how much she loves life. I hope we can continue to be the best stewards of this most incredible and amazing gift for Hana.

Thank you donor family. You are in our hearts every night.

With Love,


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:



Stay tuned!

Happy New Year

I know, I know, this update is long overdue. I’m sorry. I’m tired. It must be having a baby that makes me too tired to keep my eyes open too long as soon as I sit down. Actually, I’ve been tired mostly because I spent almost the entire fall season sick. Since we got back from Hawaii in mid-September and we all contracted RSV, I’ve had a nearly non-stop flow of bad colds, with a week in between. Luckily, colds I got that the kids did not get first, I did not spread to them. Corrina got the croup right after Thanksgiving which spread to me and then Hana. It took me the longest to get well (five or six weeks), even Hana got better long before me. This is not bragging (but may sound like it) but I’ve had people say to me, “I don’t know how you do it. How do you do so much?” Well the answer is, I don’t, I hit a wall. Because my body obviously told me I was doing too much and I needed to take better care of myself. I also struggled a lot this fall with anxiety or maybe you would call it PTSD having to do with all we’ve had to deal with Hana. Dark thoughts kept creeping into my mind and it took a lot of energy to overcome them. Maybe I’ll say more about that later. This has been too much about me already. Now, more about Hana.

Hana is doing GREAT! She is LOVING life. Truly. She goes to Forest School two mornings a week for preschool. This is 100% outdoors in Golden Gate Park in the woods. They climb trees and play with sticks and dirt and pinecones. She loves it. I would have loved the idea of it even if she weren’t immune suppressed but its an added bonus that she is less at risk of exposure to other kids’ germs. The teachers are amazing too. If you are wondering what they do in the rain, they stay outside and play in the rain and mud! I dress her with a base layer of wool long underwear and she has good rain paints, raincoat and boots.

Hana started swim lessons this fall too. She also really loves swimming and is so excited that she is will to sit poolside for 30 minutes (with a stack of library books), while I take Corrina in for her lesson first. I think its amazing that, after nearly nine months of not being able to even take a bath submerged in water, that she loves swimming so much.

Lastly, the latest addition is that Hana started taking dance class. I was not going to add another activity but she was asking to dance all the time and when I showed her a few preschool dance videos (check out Petite Feet on Amazon streaming video) she fell in love. So she started a ballet/tap/tumbling class with just the right mix of structure and age-appropriate fun and she loves it! She is very motivated and driven all on her own. I think she actually would enjoy a more focused class, which surprised me, considering her age, but its more than good enough for now.

In between all these things we try to make it to the playground, the beach, the Children’s Creativity Museum (if you go, check out their Sketchtown exhibit, its amazing), the Bay Area Discovery Museum, the San Francisco Zoo, and the California Academy of Sciences. We keep fairly busy. I think I may be trying to overcompensate for all the time Hana has had to spend stuck in the hospital. But its now winter/rainy season here in San Francisco during one of the worst cold & flu seasons in a long time and we are hibernating a little bit to keep away from the germs. So, I think we will have plenty of inside play time.

Unfortunately, the last cold caused Hana’s biopsy in December to be rescheduled. She got a 1b, which Stanford treats as mild rejection (other transplant programs treat it as no rejection) in November and was supposed to get another follow up biopsy in December. Now, that’s rescheduled for the end of January. The theorize that the 1b was a reaction to the RSV in September. This is why it is so important for her to stay healthy.

Okay, now I’m frustrated because the rest of this post got deleted somehow. Oh well, I think you got the main points! Happy New Year!

Why We Scamper

The Summer Scamper is just a couple days away! This big fundraising event for Lucile Packard Children’s Hospital has the slogan “Why We Scamper” and this week I’ve been taking that to heart and really contemplating, more than usual, what that means to me, especially one year post-transplant.

When you have a baby your life changes, you change, and parents everywhere know this. The person they were before that baby was born is not the same person afterwards, you can never unknow what it is like to be a parent. It was the same when we so suddenly learned about Hana’s heart condition. Bam! All of a sudden, in an instant, our lives changed forever. I have changed from the person I was before, I can never unknow what it is like to have a child with a life-threatening condition. Maybe if you know me fairly well you may not necessarily see these changes, but something fundamental shifts deep inside. I can’t even really explain, with words, what this means. What I can explain is that amazing people were able to save Hana and give her a second chance at life. So, when asked, “Why we scamper?” its because for me, that second chance and the amazing people who gave that to her, touches a place deep down inside where the shift occurred, a “something” I can never unknow.

The Summer Scamper is about kids, of course, but behind all that are the people that save the kids. Some of these people are the amazing doctors, at the top of their game, in an elite class. If they were professional athletes they probably would be famous and get paid lots of money. They have dedicated so much of their lives to saving the lives of kids. It has been a very humbling experience watching (of what I get to see) them work. So, I Scamper for them too – so I can support their dedication to saving the lives of kids.

Lastly, I Scamper for all the kids who are no longer here with us. Well, for the families too, because if there is anything that might create another fundamental shift deep within a person, it might be losing your child. I have seen these parents (and grandparents) and the pain in their eyes shows that it runs to a deep, deep place. So in what small way I can, this is my show of support for them. To honor their pain, I feel like we should not take for granted the life we have. So, I Scamper in gratitude for life.

Please consider supporting our Scampering by donating to Hana’s Heart Scamper team:

Here are some images from this past week:

Our amazing Hana’s Heart Scamper team, besides me and Paul, includes: my best-friend Suzanne and her two kids, Delphi and Travers (they are doing the kids Fun Run), our friend Megan who came to the hospital every week to play with Hana, our friend Katie whose daughter, Maya, also has dilated cardiomyopathy and lastly, my friend Brenna who I’ve known since I was a little kid, is participating as a virtual runner!

To sum up Why We Scamper, its for videos like this (Hana leaving the hospital after her transplant. After seven months in that building, she finally got to walk away and leave it behind her):

Hana’s Heartversary

On Sunday two weeks ago, May 28th, we celebrated Hana’s very first Heartversary – one year with her new heart.
It turned out to be a wonderful celebration! We invited some of our local friends and supporters for a big picnic in Golden Gate Park. We were even lucky enough that some of Hana’s medical professionals came! This was a party to celebrate life (Hana’s) to give thanks (to you – all of our supporters) and to commemorate the donor. I think its this last point that really has me thinking these days. It has been a year since the donor family lost their small child and made the courageous decision to donate their heart. Not a day passes where I don’t stop and think of them, hope they are able to find some peace and maybe some solace in their decision.

I wish we could have had a chance to have all our family, friends and family from everywhere come to the party. You are what has carried us through! On that note, you may wonder how we managed to pull off having a huge party with a four-week old baby. Our local village here in San Francisco is that answer! A small group of our friends rallied together and took care of all the party details, I just took care of all the big things before the arrival of Corrina. It was amazing. All Paul and I had to do was just show up on the day of the party! Balloons, tents, chairs, tables, food, drinks, a cake, picnic blankets all just showed up at our reserved party spot and all of these wonderful woman (it was mostly the woman, but I know the husbands helped too) have their own toddlers to run after! This is such a perfect example of how important our village is and what an impact they make on our lives.

For our family, life is moving along, especially with the addition of Corrina to our family. Hana is doing great thanks to the medical professionals who dedicate their lives to these kids. This past week she had her one year clinic visit. Coincidentally she was checked out by the original director of the heart transplant program (now semi-retired). There was a tiny bit of concern over Hana’s persistent cough and runny nose (they are thinking possibly allergies) although it doesn’t seem to bother her at all and her lungs sound perfectly fine. We were able to drop two of Hana’s medications – Valcyte and Amlodipine. As long as Hana’s blood pressure stays within normal range she can stay off of the Amlodipine. Hana’s weight gain has been good (thank goodness for all the great summer produce!) She has her annual biopsy in a week, which will be more invasive than any other biopsy since they will look at both the right left sides of the heart (its normally just the right). It will be an all day affair at the hospital. Let’s hope and pray for zero rejection and ideal heart pressures.

I can’t believe it has been a year already. Thank God. What a miracle.

I’m sorry this update is getting posted so late, it has been really hard to find time to sit down at the computer when you have a newborn (and you don’t fall asleep). Corrina is six weeks old today!

I do have something exciting to share in the next or so. It brought tears to my eyes. I hope you like it too!


She picked out her outfit for the day.
Hana is signing, “Good Job”.


This amazing cake was made by our friend Carole! Amazing!
Our friends Isai and Alison from Tamalitos Catering did all the food.
Take a heart. Sign your name. Say a prayer or well wish. Drop it in the frame.
The cookie decorating bar.


This is The Amazing Rachel, our kid entertainment. She was truly amazing!


Grandpop helps Hana fly with her butterfly wings (Thanks to the Amazing Rachel).


The Amazing Rachel had all the kids captivated.


Paul says a few words of thanks before we cut the cake.

Our great party planning crew!

No Word Yet

Things have been really good. Hana is making progress in her feeding therapy – we’ve dropped another feed and she continues to eat and drink more. Her Prograf levels are within the goal range (finally!). She is happy and we are making it out for trips. Unfortunately, the team at Stanford has decided that Hana is not allowed to be at home full time yet, they want her drug levels (Prograf) to be stable. We are not taking Hana to get more blood work until next week, because this week was stable they will make no changes. So, the soonest they would get another drug level would be next week with her blood work so it seems the soonest we would be allowed to take her home permanently would be next week.

I am so disappointed with this, but trying to just move on.

Things at the house are coming along. Unfortunately, our garage was burglarized. It seems when you are having your house painted (which we are, we need to get it done before Hana can be at home permanently) and there is scaffolding up it is like posting a big “Welcome!” sign for thieves. It is hard to say what was taken because I don’t know what was where anymore but for sure a PlayStation and the painter’s tools were all stolen. But the house is looking great and everything with the paint job should be done this week.

Another unfortunate incident is that our bike at the Ronald McDonald House was vandalized. As far as I can tell only the front wheel was stolen. It is almost a guarantee that someone at the Ronald McDonald House is the one who vandalized the bike, because the area is only accessible to residents. I also think I know who did it and the kid from the family has since gone back home. This is hard for me to swallow.

But again, we are trying to move on.

Things inside our house are slowly getting done. Things are getting organized and cleaned, bit by bit. It kind of feels like we are just stuck in between moving – we can’t really move out or move in to any place. I get very sad when it is time to pack up for the night and go back to the RMH. I especially hate leaving Poppy. Hana seems to really enjoy having Poppy around and I just can’t wait for our family to be a complete unit again!

We’ve been trying to have a lot of fun with Hana. She still has to endure days where we get chores or errands done and certainly where we spend most of the day at the hospital for appointments. In between we try to go to the playground, pool or the beach. We had a great time over the weekend taking the Roaring Camp train from Felton to the Santa Cruz boardwalk. We had Hana wear her mask the whole time (with a few breaks when we could be away from people) and I was constantly wiping off her hands, but it was great fun!

Tomorrow (Wednesday) Hana has another clinic visit. I’m going to advocate again for them to let us move home, but I’m feeling kind of defeated. Still, we are very grateful and loving life outside the hospital!



Hana Visits Home

Its so strange to say that we are “visiting home” but that is indeed what we did. It makes you think about what “home” really means and for us it is still our place in San Francisco. That’s where we want to be, soon! On Saturday we made the trip, with Hana, to our home in San Francisco.

Hana got out of the car, walked out of the garage and immediately started climbing our front steps. This is all after we picked up Poppy and the two of them were quite excited to see each other. Anyway, Hana walked in the front door of our house liked she owned the place and started walking down our long hallway. You know what she was saying? “Happy! Happy! Happy! Happy!” I couldn’t believe it. I really didn’t think she would remember it, not after eight months and being so young and little when she left. She certainly seemed to remember it.

Hana LOVED being home. She had a great time. She loved being in the backyard checking out all the plants. She loved climbing things and going through all the toys she hasn’t seen in a while. Poppy loved being home with us too. Poppy also loved getting LOTS of treats from Hana. Unfortunately for me it was rather stressful. Hana was putting lots of things in her mouth. The house is quite dirty and dusty and Hana was touching everything and putting her fingers in her mouth. I found the rubber end of a door stopper and several dog treats in her mouth. Instead of getting much done, I was following Hana around wiping her hands.

The hated blue ball, kind of hoping she breaks it.

It was very clear that our house is NOT a place ready for an immune compromised person to spend more than a few hours. At least, not when they are a toddler and can’t comply with keeping their hands clean or at least out of their mouth.

We did have a great time being out in our neighborhood. But it did remind me how much dirtier our streets and sidewalks are compared to Palo Alto. It is definitely going to be another transition we will have to make when we get home. We walked through our neighborhood, got some ice cream and just checked out what’s new. Later we went to the BBQ place where we could sit outside with Poppy. It made me really sad to leave. I can’t wait to be back home! But for now, we wait and we make the best of what is.

Back in Palo Alto things continue to go well. Hana’s blood pressure is still high and I try not to worry too much about it because the doctor’s don’t seem to be too worried. Hana went to her first feeding therapy appointment with one of the speech therapists that she worked with in the hospital. It went really well. Hana has been putting food in her mouth and then holding it in her cheeks. She will do this for more than an hour. Then I have to fish it out. In feeding therapy we worked on getting her to chew smaller amounts and getting her to swallow. At home (oops, I mean the Ronald McDonald House) we have been continuing this rather laborious process but every day she seems to be making progress. Today she ate three baby pickles (she loves pickles), a string cheese stick and various crackers and pickle flavored popcorn (the latter two I mostly had to fish out of her mouth). She also will eat ice cream or frozen yogurt but seems to self limit. I honestly can’t believe she’s eating this much. Today she actually drank enough milk that I could reduce the volume of one of her tube feeds.

Feeding disorders or tube weaning is VERY stressful. Anyone and everyone I know that has had to deal with it will agree. I didn’t stress about it in the hospital, I decided to wait to tackle this after Hana’s transplant. Now I actually have hope!

Speaking of hope, I saw a sneak preview of the very nice letter written to Hana for the awesome check donated to Donate Life America. The word from Gina is that they aren’t used to getting sums of money because of a toddler or even a living recipient. 

Thank you for making this so special! One of these days I hope I have the opportunity to more specifically honor Hana’s donor. Sometimes those things don’t work out. Sometimes they do. I think of the donor family often. The loss they must feel. What it was like to go home and see their child’s things around. It’s been six weeks. How are they doing after six weeks? Would it give them some peace to know Hana is doing so well with their child’s heart? Or maybe it would make them feel even more sad. I would get it either way. I hope they can feel somehow that we honor their child and choice to donate life to Hana. Below I am reposting the lovingkindness meditation for Hana’s heart donor:

May the donor family be wrapped in a blanket of love and tenderness.
May they be held and rocked in their grief.
May their memories and stories be heard as sacred.

May their compassion and generosity be a lesson to us all.
May their child’s life force bless the world with each sunrise.

In time, may they find solace and meaning in their most loving gift.
In time, may their hearts be healed and at peace.

We’ve been getting out and about and Hana is climbing and talking and really making up for lost time. She is definitely closing the gap on her development!

Thank you everyone!