eugenia mancini horan – Hana's Heart

People Can Be Awesome

Posted on July 16, 2016 by kathleenyago

It’s been a really great week for us. It has not been a great week for some of our neighbors here at the Ronald McDonald House. The news has been crowded with depressing stories ever since Hana was discharged from the hospital (Orlando shootings)

That’s all I’m going to say here about the news. I will say there are a lot of sick kids around here, some get better, some get worse, some hold steady. I hope we can all help each other the best we can at any given time. Sometimes you are the one who needs help. I’ve been that person. This week an amazing group of moms in a Facebook group in San Francisco rounded up an amazing collection of newborn gear for a mom here that needs it. This mom is one incredibly strong woman who I would never ever describe as needy but life has handed her and her family an incredible challenge and it warms my heart that people have jumped at the chance to make someone else’s life less stressful when a baby is coming and an older child is very sick in the hospital and the rest of the family live far away. People can be awesome too!

People like Gina are awesome, who worked so hard to raise $3,000 for Donate Life America in honor of Hana and her donor. I started writing this post Friday night before I dropped my phone (I write almost all these posts using my phone) on my face because I was so tired, so I decided to finish it tonight (Saturday). I’m glad I did because now I can include the blog post from Mitch at Apericots. Mitch sent us the Tiny But Mighty t-shirt seen in this video. The blog post is about Hana and Gina and a little about me but it’s mostly about Hana and Gina. It’s a great story! Here is the link:

http://www.apericots.com/blog/the-good-in-the-world/
People like Mitch are awesome!

This past week we went to a new playground called Magical Bridge Playground, it was developed for special needs kids and has an incredible assortment of play structures that are fun for all kids. Hana’s physical therapist recommended it. We’ve had a great time going four times this week! We met up with some San Francisco friends one day. One time I even jogged there (and back) with the jogging stroller. I decided on the way back midway between mile 7 and 8 that I am probably crazy for taking on this adventure and I wish I could bottle up my motivation to be used in other areas of my life.

Besides physical therapy, Hana had feeding therapy, bloodwork, an echocardiogram and a clinic visit. Feeding therapy is actually showing progress! Hana loves pickles. She’s trying more and more foods. It still requires a lot of effort on my part every day but small steps are being made. Blood work showed that Hana’s Prograf (tacrolimus) levels are still way too high, but not dangerously so. Her echocardiogram looks great, for a transplanted heart, which I think means that it looks like a transplanted heart and it is functioning great. The only note was that the walls of the heart look a bit thick, which they said is not surprising. Lastly, Hana is finally gaining weight and is above her pre-transplant weight! This is definitely the way we want things to go especially if we are talking about tube weaning. The doctor said, about her clinic visit, that there really wasn’t much to talk about!

Hana’s blood pressure continues to be high, but it seems to be trending down a bit. She is nearly maxed out on her current blood pressure meds so we just need for her Prograf levels to come down and her blood pressure should follow. Hana’s last scab fell off on Friday – the larger of the two Berlin Heart cannula sites. I’m giving the site a few more days and then Hana will be able to take a real bath and she will be able to swim, for the first time since mid-November! We are so excited!

This coming week we have physical therapy, feeding therapy, clinic visit, blood work and another cath lab/biopsy. It’s busy! They moved up the cath lab/biopsy because they were having some scheduling problems. After that we should know more about some medication levels and weaning. On Monday we hear about the results from her last round of IVIG therapy and we will know if we need to continue it or if she is done. Then, maybe, we will even have a clearer sense of when we can move home! There is still work to be done in and around the house. The exterior is being painted (we were advised to do so before moving back). Amazing friends are helping to clean and organize! The backyard needs to be free of all the dried leaves and the compost pile. I am so excited! In the meantime, we are enjoying warm summer weather while it lasts, since it is not really ever warm in San Francisco.

Lastly, there is a family here from Hawaii whose 14-year old daughter, Destiny, desperately needs a bone marrow transplant. Unfortunately, there is no match for her in the registry. Destiny is of Japanese, Filipino, Hawaiian and Puerto Rican descent. Ethnically mixed people are the hardest to match for bone marrow. There is less than 4% chance of matching ethnically mixed people from the bone marrow registry. If you are not already registered, I urge you all to register to be a bone marrow donor. If you are of mixed ethnicity similar to Destiny, I urge you to register or encourage someone you know to register right away, maybe we can still find a match for Destiny that will save her life.

Getting In A Groove

Posted on June 27, 2016 by kathleenyago

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

Posted on June 25, 2016 by kathleenyago

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.

A Long Day Coming Up

Posted on June 22, 2016June 22, 2016 by kathleenyago

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)!

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

Happy

Posted on June 20, 2016 by kathleenyago

Hana has had an explosion of new words, both spoken and using American Sign Language. Some things she only signs (like poopy diaper, it’s probably good she isn’t mentioning that out loud) and some things she only speaks. Her new favorite spoken word is “happy”! Of course, she is also using it in the proper context – she’s been really happy!

Today was my first day on my own – my mom left to fly back home very early this morning and Paul is trying to get back to the routine of working from the office every day. So far, so good! We walked to physical therapy (certainly there were some eyebrows raised at this, but it’s only one mile away) and the route I took was quite nice and peaceful. In the afternoon after her nap, Hana and I cleaned our room at the Ronald McDonald House (it’s been a long time since I’ve cleaned a bathroom!), we did a load of laundry and we washed a bucket of used syringes (I don’t miss washing syringes). If you were wondering NONE of the syringes we use have needles.

It was nice to do some normal things as we start to think about going back home again some day.

Once again, I’ll mention that the amazing Gina is offering prints of her paintings, The Gift and 10 prints of Let Go. The majority of the price of these prints are going to support Donate Life America which is committed to getting people registered and raising awareness about the importance of organ donation. In addition to the prints, Gina is going to offer 5×7 greeting cards of The Gift for $5 each, again with some portion going to Donate Life. If you are interested, please contact me or mention it in the comments with an email address where you can be contacted. Support a heart!!!

See the links for these amazing prints below.

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

http://eugeniamancinihoran.bigcartel.com/product/let-go-new-large-sized-limited-edition-of-10-for-hana

A Great Summer Scamper

Posted on June 19, 2016June 19, 2016 by kathleenyago

Today (Sunday) was the Summer Scamper and it was great! I heard that 3,500 participants raised about $550,000 for the hospital where Hana is treated. I finished the 10K at in 57 minutes and I felt good! My only regret is that I did not do enough for our Hana’s Heart team, next year we will get team shirts, at the very least! I will admit that I cried a little when we started running – sometimes it all just feels so big, all of this, this way of life, the huge depth of emotion through all of this.

Hana had a good time too. We generally kept her away from the crowds and when we moved towards more people she wore her mask. She seemed to really enjoy watching the kids race and afterwards enjoyed running on the track! We also seemed to have constant hand sanitizing going on, the poor kid had hands sticky with so much sanitizer!

Thank you to Suzanne, Delphi, Travers, Megan and Susan for being part of our team! I hope we can have even more fun next year! Thank you to my mom and Paul, especially Paul on Father’s Day, for helping us get through the morning. Thank you to everyone who donated, you are awesome!

On the topic of donation, I’d like to remind you again that Eugenia Mancini Horan is offering prints of her painting, The Gift, until July 1st, with 50% of the proceeds going to Donate Life America in honor of Hana and her donor.

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

In addition, Gina is offering ten prints of the original painting that introduced me to her work, Let Go.

Please use the following link if you’d like to purchase one of the ten prints, again, 50% of the proceeds are going to Donate Life America: http://eugeniamancinihoran.bigcartel.com/product/let-go-new-large-sized-limited-edition-of-10-for-hana

Sunday Summer Scamper

Posted on June 18, 2016 by kathleenyago

Tomorrow (Sunday, Father’s Day) is the Summer Scamper race to benefit Lucile Packard Chikdren’s Hospital at Stanford. I will be running the 10K race! I haven’t had a chance to do much running over the last several weeks, so I hope I don’t hurt too much! If you’d like, I think you can still donate. Thank you to everyone who has donated! I hope we have some great pictures to share tomorrow!

Today has been a great day. We were all sad to see my dad go, but he has to get back home and get things taken care of. I’m kind of feeling the same way about our home in San Francisco. It’s been a dumping ground for things coming from the hospital – things she’s outgrown or are no longer useful or we just don’t have the room. Plus it’s kind of dusty and dirty and disheveled! Now, we need to start thinking about getting things ready for Hana to live there again in a couple of months!

Hana did a lot of walking and climbing and talking today! She also ate more than I’ve ever seen her eat – ice cream and cheese and bread. It’s not very nutritious but we have to start somewhere! Things at the Ronald McDonald House are going really well and we are enjoying the community feeling. Hana really likes watching all the big kids.

Remember, prints of The Gift are available to order!

21 days with the gift of a new heart!

The Gift Of Hana

Posted on June 17, 2016 by kathleenyago

This story begins several years ago when I was visiting one of my sisters in Sackets Harbor, NY (a lovely, idyllic little town on a bay of Lake Ontario). We wandered into the tiny art gallery and I saw a painting I loved, called “Let Go“. I couldn’t afford the painting but I bought a print that I took home and saved, tucked away. I saved it to hang in Hana’s room, when I knew we were having a girl. That’s where it is now. Before I hung it in Hana’s room I decided to look up the artist to see what she was up to lately and I started following her new work.

When Hana was in the hospital, the artist, Eugenia Mancini Horan, was selling a watercolor that I liked where the creature was blowing bubbles and it seemed fitting for Hana’s hospital room. To my surprise, when the watercolor came, so did a few new prints from the artist which I was happy to put on the walls for Hana. It was then that the artist, Gina, started following Hana’s story.

Then, Gina sent me a photo of a new painting that was emerging, it was a painting of Hana. When I showed it to Hana, she immediately said, “Hana!”

Now, the painting, The Gift is finished! As a tribute to Hana, prints are available for a limited time with a portion of the proceeds going to Donate Life America.

Here are Gina’s own words:

“The story of my painting – The Gift. It is my painted tribute to Hana Yago. I painted it before her transplant, painted it as I hoped to see her one day… No more tubes, no Berlin Heart, just a little girl with the eyes of an old soul that in her less than 2 years on earth has become to so many people known and unknown to her an inspirational sign of hope, tenacity, and stubborn determination to live. I know I am by far not the only one that has been captured and captivated by her story, that was effected by her lows – joyously celebrated the highs – no day more so than when Hana got her heart! It was very shortly after I finished the painting that her heart arrived, and it has been such an emotional journey watching the painting become more than hope – but now – reality!

And as much as in my head I like to think that Hana overcame her obstacles on her own, for I do believe if anyone were capable – it would be Hana! …I realize that there were so many factors in play to get her on the road to home and wellness that she is on now. Countless doctors, nurses, the unwavering and relentless support of her family, those that created the science and medicine that allowed her to live before getting her heart and now after… and one child, one incredible donor, that gave her a gift. A heart. Hope. A future. And that gift can not ever truly be repaid.

But I would like to try in some way. To honor Hana’s story, and to pay tribute to the child whose heart made this day possible. I will be selling a limited edition of Giclee prints of Hana’s painting, and the proceeds will be given as a gift donation to an organization/organizations that Kathleen is still working to narrow down and will be announced this weekend (talk about limitless choices!!). Donations in Hana’s honor, paying tribute to her joy of life that is passed on to all of us, to help others in similar stories that have not gotten their happy ending, or is it happy beginning… Yet. Each person that contributes I will list and print out for Hana to have, so that one day Hana can see just how many people her life has touched. And hopefully the money will help to save others we aren’t aware of, as each and every person in need of an organ is someone’s ‘Hana.’

I will be selling the prints by pre-order only, so as to be able to donate as much as possible. (With a pre-order system I will know how exactly much paper to order/mailers/ink/etc.) Each print will be 11″x14″, printed on heavy 300gsm archival cotton rag paper with archival inks and protected in a sealed poly bag. They will be signed, numbered and dated, and the edition will close at the end of the ordering period, and no more of these prints will be made. As a bonus, I will do a small limited edition of 25 13″x19″ prints on 300gsm luster paper. I call it the Elite Edition, for those who might want a bit more of Hana!

So, if like me, you’ve been touched by Hana’s story, now is the time to do something to give back, and let her know… and to thank her for touching our hearts on her journey to get her own. I mean, if ever we needed to celebrate a truly awesome joyous story in the world – that time is now!”

Prints can be purchased here, until July 1st: http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

Also, if you are on Facebook and want to follow this event you can follow this link: https://www.facebook.com/events/969128839870400/?ti=icl

We are so touched by all of this. It has been an amazing, incredible journey.

In other news, Hana continues to do well. She loves being outside more than anything (she always did, even as a little baby). She likes watching the big kids play! She had speech therapy at the outpatient clinic, which went very well. She has been enjoying time with my parents who are getting ready to leave over the next couple of days. She is starting to nibble on food more often! She seems very happy! (Thank you to whoever sent the new mask!)

20 days with a new heart!

Putting Your Heart On Ice

Posted on May 1, 2016 by kathleenyago

Saturday morning I had the rare pleasure of driving in the car. I was listening to West Coast Live, which is a local San Francisco radio show that is broadcast on public radio. They were interviewing Eleanor Coppola (yes, the wife of Francis Ford). One thing she talked about was something Francis had read in a book and it was the phrase, “Putting your heart on ice”. She described it as meaning a time in your life when you are frustrated and you aren’t doing what you want to be doing, what you were meant to be doing and you were just slogging through, maybe to just make it through a difficult phase.

Some would say that right now we are “putting our hearts on ice”, as we wait. I’ve heard people say that our lives are “on hold” until we can get back home. Certainly, this is true in many ways. But, life goes on no matter what and we’ve tried to live it as fully as we can, even when we are stuck in a hospital. Or, you could we have the privilege of being cared for by an amazing group of nurses and medical staff at an amazing hospital on an incredible life saving device. Because of this, Hana has a chance. We get to watch her grow and develop and really be an incredible joy in our lives. So, our lives do have a lot of joy. Maybe we are exactly where we need to be.

It also really struck me how ironic the phrase “putting your heart of ice” was in that it is exactly this that will happen when Hana gets her chance, her gift of life. A donor heart for Hana will arrive on ice. I hope we can always honor that gift with lives full of joy and gratitude.

It is with gratitude that I’d like to show a couple of things, that Hana has received lately. A couple of nurses made some things for Hana (and one thing is in the works).

Hana-4638_web — Custom made window cling!

Hana-iPhone-1378_web — Hot air balloon decoration!

Then, I’m very excited because an artist I first discovered years ago in Sackets Harbor, New York, when my sister lived there, heard of Hana’s story. She was inspired to paint one day and realized she was painting Hana. She shared this painting with us while it was in the works, but it recently was completed. Its been very exciting and we are really in love with the final work! I feel it really captures a certain part of Hana. When I showed Hana a picture of the painting, she said, “Hana! Hana!”

Hana-iPhone-1368_web — by Eugenia Mancini Horan

To see some of her other work, you can follow her Facebook page, The Art of ima.GINA.tion. Or you can visit her website.

Lastly, Hana is still doing great! She did slip and fall and hit her head the other day. This is always a big deal because she is on so many blood thinners. They do neuro checks every hour for the first four hours and then every four hours. She is fine. Tomorrow she has another round of IVIG therapy. She had two play dates in the last week that really made her day! Monday, another one of my sisters and her husband arrive. We are really looking forward to the visit!

Hana-iPhone-1337_web Hana-4925_web Hana-4912_web Hana-4909_web Hana-4893_web