Last month we had the great honor of meeting Hana’s Heart donor family! Before I get more into that I just want to give a quick update on Hana. I know many of you that follow this story also follow on Facebook or Instagram so you probably already know all the latest! Hana had her follow up biopsy done, after her grade 2 rejection, and it came back 1a – a good result! They treat this as “no rejection” so we were feeling very relieved. It was a stressful couple of months. Hana seems to be doing very well on her new immune suppression medication, everolimus and she is not getting any mouth sores which is a very common side effect. She was so incredibly brave and started swallowing her everolimus pill (before we were crushing it and mixing it with water right before she took it twice a day). She earned herself a trip to Children’s Fairyland in Oakland, a deal I made with her if she started swallowing her pill.
Hana’s lower GI issues have greatly improved but are still not “normal” so we will see, but we will definitely take “greatly improved” over what she was dealing with before we switched her medication. She was complaining of her stomach hurting, which can happen when someone is on steroids. It didn’t seem to affect her much except that she would complain from time to time so I didn’t worry about it too much. We are tapering off her steroids so I figured she wouldn’t have to deal with the stomach pain too much longer. But she seemed to be complaining more and more and not just after eating but also first thing in the morning, before she got out of bed. Since stomach pain was her only sign of her grade 2 rejection in February, the transplant team wanted her to get blood work and to come in so they could check her out and see her echocardiogram. Everything checked out fine! It was quite a relief! We talked about any stress she might be under or any changes and how the stomach was often “the mind’s eye”.
They also thought that her stomach might not be feeling very good from taking so many medications and switching to pills could greatly improve that. So, since she was doing so well taking the everolimus pills they switched two more medications from liquid to pills. She took them like a champ. I am so proud of her! Seriously, we are also VERY HAPPY to have less liquid medications to deal with. This means less syringes. This means less trips to the pharmacy, actually we can now get ALL of her medications via mail order, so NO TRIPS to the pharmacy. It also means I can prepare pillboxes for the week and the rest of the liquid medications I can draw up a week’s worth at a time. There is just one medication that I have to draw up every morning. It is a huge game changer. If you’ve never had to deal with multiple liquid medications over a long period of time, especially ones that are compounded, expire quickly and need constant oversight, you might not be able to fully grasp what a big deal this is to our daily lives. But it is HUGE!
By the way, Hana has barely complained about her stomach since switching some of her meds to pills! Hana also celebrate her THIRD HEARTVERSARY! We are so lucky and so grateful.
In other news, we went to France for a week in early May. It’s a long story and one that deserves its own blog post, but it may be one that is better told in person. Some stories are just like that.
Somewhere in between going to France and getting Hana’s checked out because of her stomach pain, we met Hana’s heart donor family, the Bibler family. Dave and Kelly drove out to California with their daughter Aubrey. They stayed with Dave’s aunt and enjoyed many of the wonderful things the Bay Area has to offer. A couple of days after their arrival we were able to meet them down at the hospital at Stanford. When the Lucile Packard Children’s Hospital foundation got wind that the Biblers were going to be in the area and we were going to meet they started talking about doing an interview/filming of it to help promote the Summer Scamper a major fundraising event that supports the important and life-saving work being done at the hospital. It also is a great piece about the importance of organ donation.
Paul, Hana, Corrina and I met Dave, Kelly and Aubrey at the hospital. We got to show them around much of the “old” hospital – where Hana went while she was on the Berlin Heart. Two cameramen and a sound guy showed up and interviewed Dave and Kelly together and then me. My only regret is that they didn’t include talking to Paul. My understanding is that it was going to be a “mom to mom” type of story so, as you will see in the video, its not quite like that. It is still a GREAT video and Paul is in it, he just doesn’t get a chance to talk.
It was amazing to meet the Kelly and Dave. Now that I have met them, it feels kind of like I’ve always known them. We were able to share many great moments, both on that day at the hospital and later in the week when we saw them again. We had a real chance to bond! We are so grateful to them! They are incredible!
Today, I want to share with you Leo’s story, Hana’s heart donor, as written by his mother, Kelly, about six months ago. Before I do that, I want to give a quick update on Hana. After Hana’s grade 2 rejection after her last biopsy, Hana has started on a steroid and all the associated medications required when on long term steroids. She also changed one of her immune suppression medications to everolimus. We really need a follow up biopsy to check her rejection status, which is important after having rejection AND changing immune suppression medication. Unfortunately, Hana’s biopsy keeps getting rescheduled because she has been getting colds, preventing her from being able to undergo general anesthesia. We are getting down to the wire now on how long the transplant team is comfortable waiting for this biopsy to happen, so we are isolating ourselves to keep the germs away. She is going to be evaluated by the transplant team and someone from the cardiac anesthesia team on Tuesday to see if she can safely undergo anesthesia and have her biopsy done on Wednesday! So, hopefully there will be an update about that later this week!
And now, Leo. The little boy who saved Hana’s life. We get to read his story, get to know him, his parents and their incredible decision to save Hana’s life. This is on the eve of the start of April, Donate Life Month. So, if you aren’t registered to be an organ donor, maybe this can be your inspiration to register, in honor of Leo. (And then, tell us about it by leaving a Comment on this blog!)
“Leo’s story began on October 28, 2014 in Fort Collins, Colorado when he entered this world and changed our lives forever. When he was born, he was absolutely perfect in every way and from his first breath, Dave ( his father) and I knew he was something special. From the very beginning, he was hitting all of his milestones and growing exactly as he should. He was even ahead of some kids his age when it came to walking ( he started just shy of turning 11 months) and from then he was running everywhere he would go and one of his favorite games was chasing our cat, Buddy. He also loved “sumo wrestling” with his dad, playing with trucks, playing in water and chasing our dogs with the broom. He was a handful but he was also so incredibly loving. He could always tell when Dave or I were having a bad day and he would stop to give us a hug or pat his dad on the back like “ it’s going to be ok Dad”. He was so intuitive and looking back, he seemed so much wiser than kids his age and that he knew more then we could ever recognize. It was almost like he knew his time here on Earth was going to be short so he made the most of every moment he spent here.
Leo had a condition called Dravet Syndrome, that he was diagnosed with post mortem after we did genetic testing. It started out as a seizure that occurred right after his 6 month vaccinations, that most likely was triggered by a fever NOT the vaccinations (Dravet is a disease that develops in utero during development when there is a deletion in one of the sodium channels). The doctors at that time believed that it was a fever that triggered the seizure and that he was going to be totally fine. Another 3 or 4 months passed, seizure free and he had another one at his babysitters. This one was not triggered by anything, totally out of the blue. Following this seizure, Leo had an MRI and EEG done to check for any kind of underlying disease and both came back completely normal. We consulted with the pediatric neurologists at Children’s Hospital of Colorado and they diagnosed him with “ idiopathic epilepsy” and put him on medication twice a day to try and control the seizure, which it did minus one febrile seizure, until his final one.
In the 9 months prior to his final seizure, life was normal for our little family. Leo continued being a totally normal toddler and hit his milestones as he was supposed to. We were also in the process of planning our wedding, which was to occur on May 21, 2016. We were so excited to start our lives as an official family and to have Leo as our ring bearer and walk us down the aisle. All of this changed 2 days prior to our wedding on May 19, 2016 when Leo had what would be his final seizures.
We were at my parent’s discussing plans for the wedding when all of a sudden, Leo’s face just went blank. He starting have what they call an absence seizure and we could not get him to snap out of it. We administered his emergency medication that we had on hand and called 911. The ambulance came and picked him up and rushed him to a local hospital in Loveland. While there, he proceeded to have 2 more grand mal seizures and was flown via Flight for Life to Children’s Hospital in Denver. The second seizure was still going when they got to Children’s and it took another few hours to get that one to stop. After that stopped, we thought we were in the clear until his last seizure started. That seizure lasted 12 hours and is ultimately what ended up taking his life due to the brain damage sustained. The doctor’s put him in a medically induced coma to get the seizure to stop which worked but we would never see our little guy wake up again.
The staff at Children’s Hospital Denver were amazing. They are very attentive to the families and the needs of the families. They were there for my husband and I every step of the way, they explained everything to us in detail and never sugar coated over anything. When they were concerned that Leo wasn’t going to make it, the neurologist came right out and told me that he was ‘very concerned for Leo’ . I won’t ever forget that conversation but the way he delivered those words to me was still very comforting. I think they do wonderful work at that hospital and once I think that I have the strength to return, I want to help donate to the children and families that stay there.
About a week after Leo was admitted to Children’s, we had a care conference with all of Doctors that were involved in the care of Leo. That day was the worst day of my life. Sitting in that room, and looking at everyone’s face, I knew that they were going to tell me that we were going to lose our baby. The heartbreak and pain from that day will never leave me and it’s still so hard for me to go back and remember those feelings so I’ll just leave it there.
After the care conference, we had a representative from Donor Alliance come and visit us in Leo’s room. The first thing she told us was, ‘Your son has the potential to save 8 lives’. Dave and I both broke down when she said that and it wasn’t even a question that we had to discuss. It was an immediate yes. Although Leo was young and couldn’t quite talk yet, we knew that this was something he was meant to do. Why would we say no to the potential of someone else’s life being saved when we knew that our outcome wasn’t going to change? After we said yes, they began all of the testing that needs to be done to determine if a patient is a candidate and good match for organ donation. They determined that Leo’s heart and kidneys qualified for donation and began the process of finding a match. I’ll never forget when the tech came in to do the echo on Leo to check the quality of Leo’s heart and she stopped and looked at my husband and I and said ‘His heart is PERFECT’. All I could say in response was ‘I know’.
Leo was officially pronounced on May 27, 2016. I don’t remember when they told us that they had found a match for him because those days are somewhat of a blur to me. I just know that he was taken to surgery on May 28. All they told us at the time was that they had a recipient for his heart that was located on the West Coast and his kidneys would be going to recipient in the Midwest. We were told that if we wanted to contact the recipients we could write a letter to Donor Alliance and they would forward the letter to the recipient family. At that point, it would be up to the recipients to respond. At that point, I wasn’t sure when we would have the strength to write such a letter and so for the time being, I just prayed that they surgeries would go ok and that Leo’s gift of life would live on.
Dave and I obviously postponed our wedding from May 21 to a later date. We proceeded to get married on June 26, 2016 at a ceremony in the mountains of Colorado in the same place that Dave had proposed to me. It was very important to me to share my last name with Leo so I felt that I couldn’t put off the wedding any longer than that. When we had Leo, before we knew we were going to lose him, Dave and I had decided that he was going to be our only child. He was perfect in every way and we wanted nothing more than to focus all of our energy on him. When we lost him, we made the decision that we wanted to have another child. We were meant to be parents and the love that Leo showed us was something that we were not willing to give up on. On August 16, 2017, Leo’s little sister Aubrey was born. She is such a gift and is so much like her brother, it is amazing. She does not have Dravet and is a totally healthy, perfect little girl. We are going to make sure when she grows up she knows all about her brother and what a special kid he truly was.
Last year, just prior to what would have been Leo’s 3rd birthday, I wrote a letter to the recipients of his organs. I wanted them to know that I think of them every single day and that I wanted to know how they were doing. I wanted to know more about them so that I could share their story with Aubrey when she gets older so that she can truly understand what a little superhero Leo was. I never imagined I would get the response that I would get!
6 months passed after mailing the letter and every day, I would check the mail hoping for a response. Then, on Good Friday, there was a letter in the mail from Donor Alliance! I knew that it was THE letter that I had been waiting for. I immediately called Dave and told him that he needed to come home because we got a letter. He started crying before he even got off of the phone. I have never been more nervous, scared and excited at the same time opening a piece of mail. Inside the envelope was a 3 page letter from Kathleen and Paul. I couldn’t read a single word without crying. They told me all about Hana and the struggles she had been through with her heart condition and how far she had come since the transplant. They were so grateful for our choice to donate Leo’s heart and I could feel the love and gratitude coming through. They gave us the information for her online blog in that letter and we feel so blessed and lucky that she was the little girl that got Leo’s heart. To be able to see her journey documented from when she was diagnosed with her condition until now, is such a gift in itself and there are not words to describe what that means to Dave and I. After receiving the letter, we mailed to release of information form back to Donor Alliance which would give us the freedom to speak directly with Hana’s family and remove Donor Alliance from the relationship. In the meantime, Kathleen was able to find me on social media and we connected that way, just prior to what would have been the anniversary of Leo’s passing and Hana’s ‘Heartversary’. We continue to be in contact via Facebook and it is so special to be able to see all of the updates on Hana and their family and she is able to see our family and we can check in and see how the other is doing. It’s such a special unique relationship that I am forever grateful to have.
Every year since Leo’s death, we participate in something called the Donor Dash, which is put on by Donor Alliance. We do it to honor Leo and his recipients. This year was extra special for us because we had a face to put to not only our son but to the little girl who received his heart. Kathleen had shared that they do the Summer Scamper each year for Lucile Packard and this was something that our family wanted to be able to participate in, even if it was here in Colorado. My aunt even participated in South Dakota! My husband broke his foot in June so he was in a walking boot and scooter during the scamper, so we rolled/walked during it . We were in Winter Park, Colorado at that time so we did the scamper through the forest.
Since the moment we found out that Leo’s heart was still beating, it has been a hope and a dream to be able to meet Hana. There are no words to describe what it would feel like to hear his heart again and to see Hana thriving and living life to the fullest. We get to see that every day through pictures from Kathleen but to meet them in person would be a whole different level of amazing.”
To celebrate Leo and his gift of life to Hana, our family is traveling to Colorado this summer to join Leo’s family, on the team “Leo’s Pride”, for the Donor Dash that Kelly mentions.
Tomorrow is the beginning of Donate Life Month! Please register to be an organ donor, if you haven’t already, and encourage everyone you know to register as well!
Today, Memorial Day, is the 2nd anniversary of Hana receiving her new heart, her gift of life. Yesterday, far away in Colorado, a family, Leo’s family, was remembering him on the two-year anniversary of the day he died. Leo was a toddler, full of life, who touched the hearts of those around him in a special way. He was, of course, cherished by his parents, Kelly and David and his extended family. His first word was “Dada”. He started walking at 10-months old and quickly started running after that. He loved ZZ top. He liked to eat goldfish crackers, puffs, potatoes and BBQ ribs.
Leo had a few unexplained seizures, the first one at six-months old after his six-month vaccinations. He was admitted overnight to the hospital. Then, a couple more after that, but everything checked out fine, so they figured it was something he would outgrow and put him on medication to prevent further seizures. Then, one day in May while sitting on his father’s lap he became unresponsive. They administered emergency medication, called 911 and he was rushed to the hospital where he had a grand mal seizure. Leo was life flighted to the children’s hospital in Denver and 12 hours later his seizure finally stopped but left him in a coma that he would never come out of. After 8 days in the hospital, he was gone.
When you have a child, your heart changes forever. You are never the same person again. So, I imagine when you lose that child, your heart gushes with so much grief, it must feel hard to ever stop or slow down. Your child is gone but you are still that changed person, never going back to being that child-less person you once were and now there is a piece of you so vital that is now missing. So, in the midst of all of that, David and Kelly, Leo’s parents made the incredibly selfless choice to donate Leo’s organs. His kidneys went to a recipient and his heart, his perfect heart, came to Hana. So sweet, sweet Leo was gone but his heart beats on as Hana’s gift of life.
On this day, I celebrate Hana’s second chance at life and remember and cherish Leo’s life. The boy he was, the people who loved him so much. Please, if you can, take a moment or more and say a prayer, spare a thought, send positive vibes to Leo’s family and remember what a precious gift he was to them.
At the end of January we received a letter from Leo’s parents. We replied with our own letter a couple weeks later. Then, a week or so ago we got a call from the nurse practitioner at Stanford saying that the family has requested a consent to release our personal information, so that we can contact each other without having to go through the donor network. I sent in the release but since I had found Leo’s mother, Kelly, on Facebook, I decided to send her a message. So, that’s how we’ve been communicating. I hope in the coming months, years we to get to know the family better and learn more about Leo.
In other news, things have been busier than ever. Corrina turned 1-year! Hana successfully weaned off steroids! Hana had another biopsy which came back good, a 1a, which they treat as no rejection. Her next biopsy will be in August for her annual cardiac catheterization and biopsy. We went back to Pennsylvania to see family for a week! I’ve been doing training and preparation to lead Tinkergarten classes this summer (outdoor, play-based, child-led nature activities). Both kids were pretty sick this last week but managed to recover enough for us to go camping this Memorial Day Weekend. Now, they are settling into some bad coughing, so hopefully this too can pass without any drastic measures.
We are in the final month before the Summer Scamper which support the children’s hospital at Stanford – Lucile Packard Children’s Hospital. You can support Hana’s Heart team, especially in memory of Leo. With your help more children can get a second chance at life.
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.
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!
April is National Donate Life Month! If you aren’t a registered organ donor, do it now!
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!
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.
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.
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:
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!
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.
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!
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!
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!