Saturday, April 9, 2016

The joy stealer

Worry is a joy stealer. I know this, because I have been living this for the past few weeks. As baby Hope's liver function tests have been trending upwards into abnormal range again, naturally, I began to worry. Endlessly. I began to question why. I began to wonder what was going on inside of her tiny, growing, and perfectly imperfect body. The fear has bordered on consuming. Actually, it has become consuming.

Hope is still on steroids and has been since the rejection beast was diagnosed back in January. Our team uses a long term taper after high dose steroids to gradually wean away in hopes of keeping the rejection at bay. Her prograf dose (antirejection medication) is increased to a high level in order to give more assurance of taming the beast. All seemed to be progressing nicely. Her labs were normal. We decided to plan a much needed road trip to our favorite place on the planet, to decompress and relax as a family after a long year. Our team gave us their blessing to go, as long as things remained stable...

Hope had a liver biopsy last week to further confirm that she is in rejection again. Her team was feeling confident that rejection is what we were looking at given her abnormal liver tests. They explained we would do another high dose steroids by IV in the hospital, and add a second medication to help fight along with the prograf, since Hope cannot continue to remain on steroids long term. Steroids are too dangerous. The team hoped we could do the steroids, add a second daily medication, and then be on our way for our road trip. Only now, she has been anemic. Her blood clot time is slightly elevated. And her Epstein Barr viral load (EBV) is not decreasing. Instead of getting a call for hospital admission the day following biopsy, our team called to say the results were still pending. Yesterday, they explained that yes, she does have mild rejection again, but they are also concerned that she has Epstein Barr hepatitis along with it. And the biopsy results for the hepatitis would not be ready until last night. This time, it is not a case of if she has EBV hepatitis, but how severe it is. Initially, they decided that a plan would be made today about treatment course. A few hours later, they called with a new plan. Because having both rejection and hepatitis is very complicated and delicate to treat, they decided that rather than have only two of Hope's doctors decide how to proceed they would rather have all of her doctors weigh in. That speaks volumes as the two doctors who would have made the decision include her head surgeon and one of the amazing liver doctors on our team.

Having both EBV hepatitis and rejection is a difficult place to be in. Treating EBV hepatitis includes lowering her dose of Prograf, giving antiviral, and IV immune boosters. Treating rejection includes further suppression of her immune system. These are completely opposite, incompatible treatment plans. Hope's team will decide which is more pressing to treat. By treating rejection, her EBV could ravage her body causing the dreaded PTLD (post transplant lymphoproliferative disorder which includes lymphoma). By treating EBV, her rejection could worsen and she could lose the very organ which has saved her life. It has become easy to fall into the slippery slope of constant worry.

Last night, as my BFF and I texted at 2:00 am, I realized that the worry was stealing my joy. Because I am allowing it to. The choice is mine. The reality is that there is no control over viruses which get into little bodies and replicate. There is nothing I can do to change the fact that Hope has these two battles going on inside her beautiful hero liver. Channeling my energy into something I cannot control is futile, and will suck me dry. My task, I think, is to put the worry aside. I know this is not easy. I am not a superhero or a saint. I am just an ordinary girl serving an extraordinary God. A God who continues to shower me with mercies and is patient with me as I learn and fail. So I will choose to try to put the worry aside. It is a choice I can make and put effort into. Instead of keeping my focus on the worry, I can keep my focus on the gift of today. The joy in today. The hope in today. And whether the time is short or long, I will treasure each and every moment I get with my sweet baby girl.

Wednesday, March 9, 2016

Two years ago....

Two years ago a precious baby girl entered the world.

She would go on to defy all odds.

She would go on to collect the hearts of those who know her.

She would go on to show that love is worth the risk.

How I hope and pray that her first mother knows her baby daughter is alive.

That there was hope.

That she will always be cherished forever.

And that her baby girl has changed the world for the better.

Sunday, February 28, 2016

Knowing Hope Inc

When I was a 20 something year old, my second job as a pediatric OT was working in my state's early intervention system. I would work there for a year, then went back for another consecutive 17 years after a year hiatus to experience life down south. Working there brought many incredibly meaningful relationships, including one which would impact my life forever. It was there that I met someone who would become one of my BFF's. My trusted and constant friend. My soul sister.

Over the years I would discover my friend and I shared the same heart for orphans. She began traveling to Russia, Siberia, and then China to volunteer in orphanages. I traveled back to China to volunteer in orphanages. Our skills as pediatric therapist and special educator were in desperate need. Orphanages around the world were full of children with medical and special needs. The caregivers needed partners to know how to best care for these children. Through our conversations and shared experiences, the idea for Knowing Hope Inc. was born. We envisioned continued outreach to orphanages through teaching and training. We would empower those "on the ground" with the skills they needed. As I continued to volunteer in China, the thirst for this knowledge grew and grew. We were asked if our teachings were government sponsored. We were were asked when we would be coming back. Invitations grew. The conference rooms were overfull. People were turned away as we needed larger space. And the word began to leak out into the community where parents, raising their children with medical and special needs, would attend. Hope was needed, and it was clear that somehow, through us, it was being given. It was given by partnering alongside with those who do the real work. The need was shown and clear. Trust had been built in an area where trust is rarely given. More needed to be done.

The purpose of Knowing Hope Inc is threefold: to provide education and training to those caring for children with medical and special needs; to provide palliative care/hospice services to the sickest of children; and to enable impoverished families to receive the support they need to obtain necessary medical care in order for children to remain in families. These purposes will allow us to serve our mission, which is to live to make a difference in the lives of orphaned and impoverished children by showing transformative compassion and care.

This past year has been a huge year of change, but one thing that has not changed was the desire to continue work that has been started. A year ago, Knowing Hope Inc was incorporated in the state of Massachusetts. This week, Knowing Hope Inc has been recognized as a 501(c)(3) by the IRS. Knowing Hope is officially a non profit. Dear, dear friends who have journeyed to China with us several times and led a team to China last year worked tirelessly on bylaws. We are now working fervently to get the logistics done such as get our website up and running, and are humbled by those who are asking how help can be given.

As I think back to all that has happened over the past 20 years, I am in awe of how it has all been unfolding. Our God has been in every single detail, each step of the way. He knew my soul sister and I, along with our dear friends, would make this happen. It is amazing to think of how each experience has been woven together to bring forth this very moment.

There is much to be done. Human lives are at stake. Life is way too short and in a blink time is gone. Live to make a difference. Little ones are counting on it.

Knowing Hope Inc
PO Box 72
Andover, MA 01810

Wednesday, February 3, 2016

For 28 Days of Hearts...CHD awareness month

It is better to be beautiful on the inside than it is on the outside. That was the theme of a fable my 11 year old chose to write for a recent school assignment. Oh, how I love her heart. Her beautiful, gorgeous heart.

Lianna is known by many to be wise beyond her age. She is my sensitive one. Her heart feels things strongly and she speaks from it. She always has. When Lianna was born in China in 2004, we were told she was very, very sick. She entered the orphanage being the size of a kitten. She had fresh IV marks indicating that her biological family loved her very much and sought treatment for their ailing daughter. Health care in the rural village area of China where she was born is rough. It is unclear if a congenital heart defect would even have been detected. Clearly she was sick and unable to keep fluid down. She was not growing. She was teeny tiny. And she could hardly open her beautiful brown eyes.

By the time we met her, she was 14 months old and had defied the odds of remaining alive as an orphan with an untreated Congenital Heart Condition (CHD). Specifically, a ventricular septal defect (VSD), patent foramen ovale (PFO), and aortic spectum (something her US doctors have yet to determine the meaning of). She was incredibly weak. She was unable to sit up by herself. Her head was sweaty. She gazed deeply at my first daughter and I as we played in the same baby room my eldest daughter had spent the first 9 months of her life in. One of the nannies plopped her into my lap and my daughter stroked her head. We were told she was waiting for surgery. We were told that they hoped she would have that surgery soon. I had no idea that the very first orphanage volunteer experience would introduce me to the orphan who would become my second daughter.

Two months after my eldest daughter and I spent a day loving on the orphans in her former orphanage, we learned that the baby with the big brown eyes, the baby who sat in my lap and seemed to beg me not to move her, the baby with the CHD who was frail and weak and sick, had had a successful heart surgery. She would be placed for adoption. Would I want to pursue adopting her? The paperwork race began and I took the leap of faith. The net appeared, just as the wise adoption coordinator said it would. She would come home shortly after turning 2, almost a year to the day when I first met her.

Before adopting my beautiful girl, heart disease had always scared me. Maybe, it's because my own heart was broken. Not in the literal sense, but because I failed to see the beauty of living in the here and now. I had clung to the future, and wanted those future plans to come true. I wanted guarantees of a long life. I had always thought I wanted close to "perfection", erroneously thinking that it would ensure the guarantee. I wanted something that is not guaranteed to any of us, whether born with congenital heart disease or not. The doctors at Boston Children's Hospital have said that Lianna's heart surgery was done exceptionally well. "It was as if it was done here", I was told. Currently she is monitored for a mitral valve regurgitation, which has been stable for several years. Heart disease is not as scary anymore. We are living our lives and she continues to teach me lessons I need to learn.

My heart girl reminds me to live in the present while looking with the heart, because her heart is that beautiful. She looks with her gorgeous heart each and every day. She finds the beauty in all people, young and old, strong or weak, special need or not, homeless or homeowner. She seems to see that true beauty that is found in all imperfect people. A true beauty that is only found on the inside. And she radiates that same beauty for all the world to see. How lucky am I to be her mother.

Monday, January 18, 2016

Anchor of Hope


Waiting is so hard. Overall, I tend to be a pretty patient person. However, there are times when that myth of myself is shattered. The adoption of each of my daughters entailed so much wait. It.was.agonizing. And now, I seem to be in a period of waiting again. There is so much waiting. Waiting for lab results. Waiting for team thoughts on those results. Waiting for congestion to clear enough so biopsy can happen.

Then, there will be waiting for biopsy results. Waiting for treatment plan. Waiting for immunosuppresion to lessen so we can "re-enter living". Waiting for the dark times and struggle to end. Waiting for the exhaustion to fade. Waiting for..... Waiting for night. Waiting for morning. Always, always waiting. And I realize, I am falling into the trap. Falling deep into the trap of believing that somehow meaningful life exists on the other side of the waiting. It's the trap that prevents me from living fully in the moment. It prevents me from living fully in the waiting. Because waiting is HARD. And waiting in hard times is even harder. It requires discipline. It requires letting go of the worry and desire to control the outcomes. It requires trust in God that the plan for my life is unfolding as it is meant to be. It requires faith that regardless of the biopsy results He will give mercies. It requires the realization that I am missing out on the mercies of the moment if I am constantly consumed by what is to come.

Hope's liver labs are the lowest they have been in the past 5 weeks. The plan for her has changed several times over the past week. Her team will see what tomorrow's labs show, and plan again accordingly. Parenting Hope is teaching me to be patient while simultaneously remove my focus from the next thing to come. She is teaching me to live in the constant waiting. She is teaching me to focus and just live. She teaching me there are too many uncertainties to place plans, hopes, or dreams on tomorrow. Those uncertainties can unravel me. So instead, she is teaching me that in the here and now is an anchor. The anchor of God will hold me steady if I let Him. He will hold me in the right now of today. I can choose. I can choose to become caught up in the possibilities of tomorrow, or I can choose to see the now in this very moment.

I have so much to learn. So, so, much. Life is whirling by so quickly. If I don't stop and breathe in the moment, I will miss it. I will miss the smallness of the hands which clutch onto mine. I will miss the gentle curves of their faces. I will miss the questions. I will miss the laughter. I will miss the tears. I will miss that they want my attention now. I will miss seeing how light comes from darkness. I will miss the mercies. I will miss being a part of the now that my girls are part of. I will miss it all. And I will miss the anchor which is oh so patient with me as I learn and holds me steady through it all.

Friday, January 8, 2016

Hope and the beast

That is what rejection was referred to yesterday by a friend of mine as we chatted about life, and I shared my fears about the cause of Hope's recent rising liver values.
The beast.

Last night I learned that Hope's team is also sharing the same concerns about her rising liver values. As soon as I heard our NP's voice, her concern and disappointment was palpable. The values were high. Again. A biopsy of her liver will be scheduled. Because rejection is serious. Serious enough that when her numbers came back high on Tuesday they wanted her back for labs again on Thursday. Serious enough that our NP said they hope to have the biopsy scheduled later today for next Tuesday.

Hope's little body is doing what it has been designed to do. It recognizes something as foreign, and begins a fight against it. Now there is a battle being waged. She has had three different medications to help prevent the rejection beast. She takes her tacrolimus/prograf twice daily without fail. She loves this medication, and loses absolutely none. This week, her labs showed her tacrolimus level was high. Her liver numbers should be lower. Not rising. And so, the process was explained to me by our NP. Biopsy to confirm rejection. Admit to the hospital for high dose IV steroids to hopefully stop the rejection. Discharge home with oral steroids. All while continuing the twice a day tacrolimus. Her immune system will be depleted. Again. We will be under strict precautions for isolation. Again. And to top it all off there was a study published yesterday in the Journal of the American Medical Association discussing the increased incidence of cancer deaths among patients (especially pediatric patients) with solid organ transplants, likely impacted due to immune suppression.

Needless to say, this news was not what I wanted to hear. As I drove home from transfusion day with Hope snuggled happily in her car seat and her two older sisters now looking pink sitting behind her, I wanted to get away. I wanted to sit with my daughters on a warm beach, feeling the soft sand and listening to their giggles as they splashed around in water. Without a care in the world. THAT is where I wanted to be. Not prepping for yet another anesthesia procedure and inpatient stay. Not preparing for the horrible personality changes, albeit temporary, that occurs with a child on steroids. I wanted my happy place. This was just too hard to face the reality that my baby girl is going through. She has already been through the unimaginable in her short 21 months of life. Rejection impacts about 20% of all liver transplant recipients. Of that 20%, there are 5% for whom the IV steroids will not work. The BEAST.

And this morning I woke up with the weight of all of this. And, as I drank my morning tea and did some reading I realized I completely forgot. I just forgot. I forgot about the mercies.

My morning devotional reading was about the story of Moses. Moses is obedient to God's plan, and goes to Egypt to deliver the Israelites. When things get harder instead of easier, Moses begins to question God. The line "If I just follow God's plan, everything should go smoothly, right", struck me. In no way was this ever promised. Being obedient to God and following His plan does not bring easy. That was never part of the deal. As I continued to read, I was reminded to draw close to God in confidence, so I could find MERCY and favor. There it was. My reminder. To look for the mercies.

I forgot. But I was reminded by a good, good God.

We may be facing the beast, but our God is with us. And He will send mercies. Like our amazing, amazing medical team. The team who clearly love my girl. This was so evident in the NP's voice as she delivered the news of the probable rejection. We have a team who will be with us and they will use their knowledge to do the best they can for Hope. We have the nurses on 10 South. Oh, those nurses. We have experienced some of our hardest days under their care, and they are gifts. The thought of seeing some of our favorites again makes the news of rejection easier to take. We will have the clinical assistants, like T, who always manages to bring a smile to Hope's face. Perhaps it is because he accidentally got some of her ascites fluid in his mouth. Yep, in his mouth, as he was emptying her drain. He never even reacted in other than a laugh. T is a gem. We will get to see him again. Our community is already rallying. Encouragement has been pouring in. And one of the biggest mercies of all is that the probable rejection beast was caught early and my baby girl is alive to fight the beast. She is ALIVE. I now have online friends in the liver world who would likely do anything to have their children still living, even if it means fighting rejection. Hope is here. And we will face this.

Wednesday, January 6, 2016

Walking toward Hope

Eight months ago I would be boarding that plane to bring Hope home. I am not sure the english dictionary has the correct vocabulary word to express the fear I had. I had absolutely no doubt that getting on that plane was what I was meant to do. And I would do it, no matter how panicked I was. But the words in my head would have arguments with each other. Literally. "What are you doing" would be met with "doing exactly what you are supposed to do". Back and forth. Over and over. I think it was the unknowns and self doubt that caused the most fear. Which led to more conversations in my mind "sure you are meant to do it, but can you handle it?" "you know, this is going to be ridiculously hard", and "what happens if....". Again, over and over. I suppose in many ways the fear could be easily paralyzing. The fear could create a roadblock to doing what I knew I was being called to do. Some may even have said that walking away could be justified. Maybe it would just be "too hard".

So I did it afraid. That night eight months ago, as we headed to the airport, we were given a ride by a dear friend of mine who made me laugh. She is naturally just a fun person. Easy to talk to. And she could tell the best stories. As I listened to her and we caught up, I laughed and laughed. For moments at a time, I would forget how afraid I was. Talk about a mercy. Such.a.mercy. By the time we got into the airport and through security to our gate those feelings of fear crept up again in full force. This was it. There would be no looking back. We were going to China, where we would receive Hope. I think it was there, at that gate, that I realized that there would also be no looking forward. No looking back and no looking forward. Only looking at the hear and now. Only looking at the present. And for moments, peace began to ensue. Just as it did during that car ride to the airport when I was fully present and living in the moment.

Hope truly lives in the moment. She has a zest for life that is just palpable. She is such a happy baby. So content. Despite all that she has been through and endured, she loves living. She is my hero. Hope reminds me every day to try to bask in the moment and allow it to remain untainted by the "what ifs" of tomorrow.

Six weeks ago she lay in an OR receiving her gift of life. Today, she lives. Today, I live. Today, we live.

Choose Hope.