People Can Be Awesome

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

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)!

​​

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

Happy

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.

The Gift

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

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

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

Sunday Summer Scamper

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!

The Gift

21 days with the gift of a new heart!