Building A Team

Hello all! There are many things happening right now, in April, and much to look forward to in the next few months! I’ll tell you much more about them in just a bit. March, on the other hand, was a heavy month. The heaviness was caused by the passing of three people in a short span of time. It weighed heavily on my mind but even more on my heart. It started with the sudden passing of my 33-year old cousin. Then, about a week later, my uncle who had a single lung transplant last year, passed away as a result of an infection. Finally, a week later, another young child we knew from the hospital who had a heart transplant, passed away. I could say many, many more things about these three people and how each death affected me personally, as the words have been forming a web of thoughts in my mind, but the heaviness feels too much for this forum.

Amongst these dark clouds, life continues on. Hana had another check-up with the heart transplant team. She got a clean bill of health and they came up with a new steroid taper schedule. As I made the prescribed decreases in her steroid, Hana ate less, whined more, experienced intermittent diarrhea and seemed more tired. Finally, last Tuesday she just didn’t want to get out of bed. She would go to the bathroom and go right back to bed. She would sit up to take her medicines and go right back to sleep. The transplant team at Stanford decided they wanted her to come in. My heart always sinks when I hear this. It means the possibility that this is something serious.

She finally did get out of bed at 1pm in time to go to Stanford. Right before we were about to get in the car, Hana had a massive vomit. I haven’t seen anything like it since before her transplant. My heart sank again that day and I hoped it was just caused by the chocolate ice cream and glass of milk that she chugged. The first words out of Hana’s mouth when she woke up at 1pm was, “I want chocolate ice cream.” Now, this is such an unusual request that I decided to grant it. In addition, I rarely give Hana a glass of milk to drink. So there you have it.

They did an echocardiogram at Stanford and everything looks the same. This was very reassuring. Plus, she was eating a little bit and her energy was a little better. They decided that her symptoms were probably caused by weaning off the steroids. They could still be caused by an underlying GI virus, but time will tell if going back up on the steroids does not alleviate symptoms. It did not seem to be caused by rejection, which is what had everyone worried.

I am happy to report that in the last week Hana has greatly improved. Her energy and mood are much better. She is eating more. She has lost some weight and is looking a little skinnier than usual but I expect that to improve. We will try tapering again in a couple more weeks, but even more slowly. Hopefully she can be off the steroid in time for her next biopsy on May 7th. I guess they see an increase in rejection when patients go off steroids and since Hana has a history of this, we need to hope and pray that she can handle this with no more episodes of rejection.

Other than this fun, Hana has been enjoying Forest School two days a week, dance class and swimming. She also loves going to the playground, playing with friends and checking out tons of new books from the library. For the rest of the family we are all doing well. We got to enjoy a weekend near Lake Tahoe recently and Hana got to play in snow for the first time. Corrina is going to have her first birthday soon! Paul has been busy with work and some golf. I have been working on a few stealth projects.
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One of my not-so-stealth projects is building a team for the upcoming Summer Scamper on Sunday, June 24th in Palo Alto. This is the race event that benefits the hospital where Hana is treated. I have registered our team, Hana’s Heart. This year, we want to dedicate the race to the family and donor of Hana’s heart. Our whole family will be walking again in the 5K. I decided to stick with the family again this year instead of running. Hana will be participating in the Fun Run for 3-year olds! I think she is going to be very excited. If you want to join our team, please sign up by going to the Hana’s Heart team page and clicking on “Join Team”. This year, if I can get my act together, we are going to do t-shirts and hopefully a team picnic after the event. I have no excuse like last year (“I just had a newborn”) to get things done!

Look for more about the Summer Scamper and the Hana’s Heart team in the coming weeks.

April is National Donate Life Month! If you aren’t a registered organ donor, do it now!
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I’ve decided to make myself an advertisement for Donate Life and raising awareness about the importance of organ donation. I’ve made and am making some t-shirts to wear, especially when I am out for a jog. Check back for updates on how that is going!
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Here are some recent photos:

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And don’t forget, register to be an organ donor! Tell your friends and family too!

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):

Possibility and Hope

I’ve got something special to share. This past week we passed the one-year-out-of-the-hospital anniversary. The hospital, including the Heart Center, showed us what was possible by giving Hana her second chance in life and it gave us, all of us including family and friends, hope. When everything seemed too heart-wrenching and terrifying to cope, there was that whisper of possibility and hope that called us to pick ourselves up and keep dealing.

I am forever thankful for all the professionals who made saving Hana’s life their job. From surgeons, transplant cardiologists and cardiac intensivists to bedside nurses, child life specialists and social workers they all play a part in touching the lives of children and their families. I remember once being at Hana’s bedside during an intense moment, unable to do anything but just be there, and I started feeling gratitude for all the people NOT in the room who had a hand in keeping Hana alive – like the person who invented the ventilator and even the person who invented the material to make the tubes that were used in the equipment keeping Hana alive. There are many people behind the faces we see at the hospital who have a part in giving us possibility and hope.

Part of how I show my gratitude is by participating in the hospital’s fundraiser each year in June, the run/walk called the Summer Scamper. Last year was the first year I participated and I got in shape to run while Hana was in the hospital. During her naptime, I would sneak out and run around the Stanford campus. Little did I know, that Hana would be discharged before the actual event! It made the race that much more special, that much more real. I remember crying while running at all the t-shirts and signs that people had made mentioning all that I was so grateful for – possibility and hope, it all felt so fresh. This year’s Scamper will be equally as special as Hana will be the Patient Hero representing the Heart Center (I mentioned this many weeks ago in the post Patient Hero). Since it will be 8 weeks after having a baby, I decided not to do the run when I registered for the race (although I’ve started running and I think I could do the 5K). Instead I will do the walk with Hana (and maybe Corrina if we get our double stroller in time).

The special something I’d like to share is Hana’s Patient Hero video. I wrote the words and provided most of the photographs but I was really surprised by the result. I really loved it and watching it brought tears to my eyes.
https://youtu.be/_fMUkeQfzY8

Please consider showing your support by contributing to our team, Hana’s Heart:
https://my.supportlpch.org/fundraise/team?ftid=116471

Here is a link to the rest of Hana’s Patient Hero page:
Meet Hana, Your Patient Hero

Dear Hana,
We love watching you sing and dance:

 

and cook in your kitchen:
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and laugh at yourself in the mirror:
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We hope you always keep your sweet spirit:
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and resilience:
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You are our greatest inspiration:

 

You are extraordinary:

You are Why We Scamper
Love, Mommy and Daddy:
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Here are a few recent pictures:

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Patient Hero

We have two special things to share with you! The first one is that on April 30th, Hana became a big sister! Corrina Mae Yago arrived after a fairly quick and easy delivery. My mother was here for a few days before the birth and several weeks after to help everyone with the transition. Hana has been really great with her baby sister and is very sweet. She is feeling the pull away from me (to take care of a baby) and has been understandably emotional but really, she’s handling it like a champ!



All of this made Mother’s Day really special for me – I had my two girls and my own mother and we didn’t have to spend it in the hospital (like last year)!


So far life with a newborn has been pretty good – I say that and I fear that Corrina’s fussiness has not yet completely shown itself. The last few days has included those crazy, fussy late afternoons/evenings that challenge your mental health! Before that and while my mom was here we did get out and about and helped Hana have some fun. Hopefully I’ll still be able to get out of the house for some fun outings with Hana and Corrina.

This brings me to our second special share – in about a month will be the annual Summer Scamper fundraiser race for the hospital and Hana will represent the hospital’s Heart Center as the Patient Hero! You can read Hana’s Patient Hero bio by clicking on this link:
https://scamperblog.squarespace.com/home/2017/4/21/meet-hana-your-patient-hero-for-the-betty-irene-moore-childrens-heart-center
You may remember that last year, just a week after being discharged from the hospital after her transplant, Hana attended the Summer Scamper – you can read about it in “A Great Summer Scamper“. We are putting together another “Hana’s Heart” team and you can donate to our team by clicking on the link below:
https://my.supportlpch.org/fundraise/team?ftid=116471
If you would like to join our team, please let me know! I will be walking in the 5K with Hana. Although I would love to run the 10K again this year, I think it is too soon after having a baby to be running!

We are VERY excited to have Hana represent the Heart Center and to support their continued research into treating children like Hana. Because of them, Hana has survived her hospitalization and thrived in life. Because of all they have done for Hana and our family we have enjoyed an amazing year together outside the hospital – that’s right, its been almost one year since Hana’s heart transplant! Hana has never been stronger, happier or healthier! She has been eating and gaining weight and enjoying all the activities a toddler should get the chance to enjoy! She is living life!

As I write this, it is the last evening of my life as a thirty-something. Tomorrow I enter a new decade. As I reflect about back on my thirties, but more this last year of being 39, I feel like this last year has been the best of my life – Hana finally got her gift of life, we all got to move out of the hospital, we got to move home after being at the Ronald McDonald House, we got to live life (with Poppy) back at home in San Francisco, we got to add a new baby to the family. All of this happened in the last year. It is all so incredible to me. It has taken a village of people to help us get here and we are incredibly grateful! I am excited for our adventures of the next decade!

 




A Great Summer Scamper

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.

Some of the Scamper team!

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