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:
https://my.supportlpch.org/fundraise/team?ftid=116471

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.
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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.
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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!

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

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

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

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

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The Amazing Rachel had all the kids captivated.

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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!

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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!

Getting In A Groove

Things have been great! There is much happiness. Hana is really loving life, she’s so free. She does still have to put up with a lot, but she is such a trooper. She is talking like crazy. There are so many new words. She is drinking a lot too and experimenting with more foods. 

We are starting to get in a groove here at the RMH. A routine is taking shape. We have a flow. I still have a longing to be home, which is even stronger since the day is in sight. I can’t wait to have Poppy with us again. So, I think the longing is really to be back as a family doing day to day things in a permanent place. I say it like that because all of this has made us think about moving out of the city. We love our neighborhood in San Francisco, mostly because of all our great friends, but city life is making less sense for an immune compromised kid. Plus, we are really enjoying warm weather here in Palo Alto, it would be nice to live somewhere warm again. For those of you not aware, a warm day in San Francisco is maybe 70 degrees for just a few hours and then the fog rolls in and it’s 55 degrees. Occasionally it gets hot, but that’s freakish weather. If we move, it won’t be any time soon.


Hana has been so happy! She still has a hard time getting to sleep at night. She still has diarrhea and bloating and seems to have intestinal pain from medications. Unfortunately, I don’t think is going to change any time soon. She does have a lot of appointments, but that won’t be forever!  I did take her out jogging in the stroller and seemed to really enjoy it. She was very quiet and I discovered her mouth was loaded with cheese she hadn’t swallowed!

Thank you all for following this journey with us. All of you inspire us! We have received many letters and packages and notes and comments and they bring us joy. We feel loved and that makes all of this so much easier!

One person who has been putting forth a lot of love lately is Gina, the artist who painted the painting of Hana, The Gift. Her enthusiasm is inspiring to me. Her willingness to be so transparent is inspiring. I think that shows in her art work. I am so honored that she is making prints of her artwork to raise for Donate Life America in honor of Hana and her donor. I am in awe of her efforts, which makes me feel like I can afford to be a bit braver!


To help support the donate life effort, get your prints using the links below. They are only available until July 1st!

http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

Hana will thank you!

Biopsy Results

First, Sunday the 26th is the deadline to order The Gift (portrait of Hana) greeting cards. All the profit from the cards are going to be donated to Donate Life America, which raises awareness about the importance or organ donation (amongst other things). See the link below!

http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26
I could mention the cards first because the second news, Hana’s biopsy results, were the same as last time, zero rejection!!! This news came as we were waiting to be discharged from the short stay unit, which was delayed because Hana’s blood pressure was so high. They decided to double her dose of amlodipine, her blood pressure medication. This is the second time in a week they’ve doubled it. I guess as you taper off the steroids, blood pressure can go up for a while. Anyway, we are very happy with zero rejection! 

Hana has been very happy. She is talking a lot more, signing a lot more and almost running! She is really starting to climb which means all the wounds in her chest and abdomen must be feeling better. Her Berlin Heart cannula sites are hardly weeping at all. She still isunder sternal   precautions for another two weeks.

Today we took Hana on a road trip eight miles from the RMH. It may be pushing the boundaries a bit but it is only 20 minutes away. There was a special occasion at the golf course there at Shoreline. Bill, an instructor, was giving golf lessons all day long to raise money for the hospital! I think he was doing it from 5am to 9pm. By the time we got there in the morning he had already raised $5,000! I think it was a nice surprise for them when Hana showed up. Bill was first inspired to do this when he saw the Dateline show about the Bingham family. Two of their kids have had heart transplants (one of them has had a second transplant) and one of them was on the Berlin Heart for a very long time waiting. Their youngest is currently waiting for a transplant. After seeing that show, he met Paul a week later and discovered Hana was waiting for a heart so he decided it was a sign to do something!



Hana is enjoying the social activity at RMH. Today they celebrated patients and siblings birthdays. People made tons of food and drink and cake. We brought out the tricycle and she loved being pushed around with the big kids on bikes.


Remember, you can order prints of The Gift by Eugenia Mancini Horan, as well as some other beautiful prints by her, for one more week. The majority of the proceeds will go to Donate Life!

http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago


http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
Thank you to everyone! We’ve received so much support we are so thankful! You have kept us well stocked and fed and most importantly you have kept our spirits up and reminded us how much we need each other and what a difference we can all make, no matter how big or small.

Four Weeks with a new heart!

A Long Day Coming Up

Tomorrow, Thursday, is going to be a long day. Hana has her cath/biopsy in the morning. Hopefully we will get to leave around lunchtime. Then we have to go back to the hospital in the evening for her overnight IVIG treatment. I am preparing for a lot of boredom and crankiness.

It’s the first time we will be taking Hana to the hospital for these treatments as an outpatient. I hope I remember to pack everything!

Today has been another great day. Hana is talking and happy. She still runs around and says, “Happy! Happy!” I wish I were more like her. After all she’s been through and all she has to face, she can still be happy and she can share it without hesitation. Maybe I’ll experiment with walking around and saying “I’m happy!” when I feel it.

But it’s hard sometimes. I try not to worry about the results from tomorrow’s catheterization and biopsy. I shouldn’t worry because there is nothing to worry about… Not until there is actually something to worry about and we don’t know when that will be. Maybe never. If I can really put that to rest than what else is left to feel? Happy!

If you would like to support saving lives with organ donation, please consider purchasing a print or cards of The Gift, a portrait of Hana by Eugenia Mancini Horan. The majority of proceeds are going to Donate Life America!

To order the print, only available until July 1st: http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

To order a pack of five 5×7 greeting cards, only available June 26th: http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26


From our room at the Ronald McDonald House, we can watch the moon rise at night. Lately it’s been fantastic. Hana loves looking at it too (she’s been getting to bed way too late)!

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Thank you for all the great gifts, packages, food, visits and decorations! It’s been great and very heartwarming.