Jason and I have tried to “get away” a few times in the last month.

We had a great talk recently about both our ever growing desires to relax. We felt so strongly that, if somehow, even if only for a minute, it would make everything better.  The truth is… it really won’t. It would be nice for the moment, but we know it wouldn’t last. God wants us to desire Him, to need Him, and to go to Him for the peace Jason and I desire.  

A few hours after our really good talk, I got a phone call from one of our dearest friends.  Her husband was being rushed to emergency room because his white blood cell count was extremely high and his platelette count too low. Hours later, we would found out that he has acute leukemia.  

This couple is like family to us, as we often spend holidays together. As you can imagine, this news “rocked” us.  Of course, we wanted very much to be with our dear friends.  In that moment, I felt God was telling me once again to desire Him above all things, to go to him for peace, for strength, for… everything. We decided to head home from Escondido (where we had managed to get away for a few days) so we could be back with our friends.  

Seeing my dear friend Leah crouched down outside her husband Geoff’s hospital room was almost too much to bear.  Geoff has always been her “big rock” who could handle anything.  A man who worked hard to graduate from nursing school to take care of other’s needs.  The head deacon of our church, who would give the shirt off his back to anyone, was now in the room suffering from chest pain and high fevers.  It was difficult and far from relaxing, yet there was no other place I would rather have been. This same couple held my hand as I almost lost our daughter Hannah and rejoiced with me when God healed her.  It felt good to “get off the mat” and able to help someone in their need.

God showed himself beautifully in the ways He worked through his people, doesn’t He?  We hadn’t had time yet to create a Caring Bridge website for Geoff before people started asking where they could bring meals, cards, money, etc. for them. People simply wanted to do something. It was a beautiful outpouring of love which allowed Jason and I to get a view into the way YOU have all felt wrapping around our family.  Geoff still has a long road ahead, but the last few days have given us great hope and encouragement for what’s ahead.  

Geoff has been fever free now for a few days and his numbers keep improving.  He will be transferred to UCLA soon and will eventually need a bone marrow transplant.  It’s pretty amazing that we will end up at the same hospital awaiting transplants together.  We have joked that we will meet in the hall for a quick hug and prayer.  Our friendship has certainly deepened as we have a new level of understanding for one another.  We were discussing today how there are times it all doesn’t seem real.  You feel like you are watching a movie and then things are gonna go back to normal.  We both acknowledge however that this is the place God has for us right now and this is the place He will do His great work.  The Dykstras have certainly inspired us with their strength and faith through this hard last week.

As for Noah, he will have a heart biopsy on June 17 to check the pressures in his heart and how much the disease has progressed.  We would covet your prayers.

Also, will you please lift up our dear friends the Dykstra Family in your prayers.  They have five young, adorable children and we are praying for restored healing.  

You can follow their journey on their Caring Bridge site here. 

- Melody

Thank you all so much for your encouraging words with my last blog post.  

I’m so thankful that even in my darkest moments, the Lord is faithful to bring me out and allow me to recognize His goodness.  It took that hard week to get me to a place where I was willing to do what I needed to deal with my debilitating disease.  

My wonderful trainer has been wanting me to start taking an anabolic steroid called Anavar.  He has seen it help a lot of people with muscle-weakning diseases such as AIDS, M.S., and so on.  I had been very hesitant as I don’t like taking things and putting stuff in my body that I don’t have to.  I was at the point where I was willing to do anything.  He also asked if I had been taking the creatine supplement he recommended.  I had stopped for like 8-10 weeks only for the reason that I had gotten out of the habit.  This also had played a big role in my strength decline.  The next day I started taking both.  

Within a few days, I began to feel a dramatic difference.  I have gained 5 pounds in two weeks, have more energy, and have increased the weights during my sessions.  We have seen big improvements and are greatly encouraged.  I haven’t been able to gain weight for seven years.  I was down to 91 pounds and really need to be up to 105.  I have a muscle wasting disease, so it is crucial that I work out to build muscle, eat, and stay on top of my weight.  For all of you who are saying you’d gladly give me your “weight”…trust me,  I wish you could.  It’s not fun.  

I see my Neurologist at UCLA on Wednesday.  Please pray that they would have direction and some answers.  At my last appointment, they wanted to do a complete gene panel on me.  We are open to this if they are willing to grant it.  It has been a long and exhausting road with no real answers in sight.  I’m learning to trust God and be patient that He will reveal those answers in time. Right now, I’m praising the Lord for His goodness and my renewed hope to not let this disease win and get the best of me.  

I need to be that example for Noah as he prepares to endure his own battle.  I don’t ever want to see him give up. I want Noah to rely on his Savior for strength during those hard days.  We can do all things through Christ who gives us strength.

- Melody

It seems that we are in a holding pattern these days.

We are waiting for “the call” for Noah’s heart, waiting for my own diagnosis (still), and waiting until Hannah’s next surgery.  Waiting can be hard and I, for one, have never been good at it! When I was younger, I remember unwrapping my Christmas presents early and then taping them back together.  Don’t tell my kids :) This is certainly not as fun – that’s for sure :)

I’m usually more positive on this blog, but I also want to try to be real.  The truth is… I’m struggling with “waiting”.

My legs have gotten weaker, which has caused more frustration.  I can’t walk very far without pain or my legs tiring out.  It reminds me how frail I’m getting and it is very frustrating. I have desired to post many times recently, but have lacked the energy to do so. It’s hard enough trying to take care of 3 kids, not to mention 2 with special needs, in addition to homeschooling them, while trying to be a good wife.  My mind wants to do it, but my body says “no, I can’t”.  This year my kids have seen me fall a dozen times, use a wheelchair, and lay in bed with heating bags.  I know things could be worse, and I know this is so the works of God can be displayed, but… it still SUCKS sometimes. I think it’s okay to admit it though as long as I don’t stay “in” it.  

I long for the day when there is no more pain. God has always been faithful in bringing me out of this and I know He will bring back joy. His mercies are new every morning.  

For now, would you please surround our family with prayer?

I will be making an appointment for myself soon at UCLA in hopes to find out what the next steps are in getting a diagnosis.  We are also working towards finding a good Neurologist closer to our home that would be able to help when needs arise. Pray that I would find joy in the difficult days. 

For Noah – that God would protect his heart until he gets his new one and that he would remain healthy, positive, and would continue to lean on the Lord.

For my husband Jason as he continues to care for us all.

For Jonah – that he would not be scared for his family members, that he would cling to God in the midst of all that is going on, and he would feel just as loved and important as his siblings.

For Hannah – that her health would remain stable and would not require her next surgery until we finish with Noah’s.

We are so thankful for all of your love and support. 

- Melody

Last night was the big dinner/silent auction event that our dear friends worked so hard on.  

As we entered the room, people were busy setting up and getting things ready. They all had smiles on their faces and were happy.  The place looked spectacular as Jason and I stood in awe.  The event started and we went around welcoming and greeting the many people that entered the room.  I felt humbled as I met so many people for the first time, who came to support our family. As the speakers shared and the presentations went on, it was hard not to become overwhelmed by God’s goodness and wonder if this was what Heaven would be like.  Such incredible happiness and joy – free of pain and worry – at seeing God’s beauty displayed among His people.  It was simply touching.  God continues to show Himself over and over again. The night was about more than raising dollars.  It is an honor to have a small role in all that God is doing through this difficult situation.  

I am thankful for everyone’s prayers leading up to the event, especially ones for Jonah – that he would not feel left out.  He had a great time. Our MC (Jeff!) even brought him up on Stage during the auction to help out, which made him feel incredibly special.  God is certainly growing Jonah’s compassion and understanding thru this experience.

Noah was also taken aback by the amount of people that were there to support our family.  He is learning everyday how to better love and support others and we thank you for being such beautiful examples to him.  You are playing a big role in what God is doing through this sweet child of ours.

Our prayer is that Noah will see God using him to bring about His glory.  Right now, things are fairly smooth. We know hard days are to come though.  However, God is preparing Noah daily and equipping him with the strength he will need to persevere.  Our family will take it as it comes… knowing and trusting that God is sovereign over all.

Noah’s doctor (Dr. Chang) came out and spoke at the event – sharing about his experience with Noah and the joys of working with families like the Lietzaus.

There are hundreds of people to thank that made last night possible.  From the amazing planning team, donors, ECCU, speakers, musicians, servers, Chef Tony, the audio team, photographers and videographers, ECCU member services, family, friends, and new friends we met for the first time.  Words simply can not express how much we appreciate your love and support.  We feel truly blessed.

- Melody

p.s. Check out photos of the event in our gallery section.

After talking to the nutritionist on Tuesday, we found out that the diet Noah will be on won’t be as drastic as we had anticipated.  

He will need to cut down on his sodium and sugar, but nothing else too difficult to handle. As you can imagine, Noah was pretty happy to hear that!  In preparation, we have however been enjoying cooking and eating foods that are all natural and do not have any preservatives.  

One of my favorite food blogs that I have found helpful is 100 Days of Real Food.  It is great!  It has great recipes, advice, shopping lists, and menu plans. I would love any advice or favorite meal ideas.  Do you have a favorite local farmer’s market that you love?  We have been making lots of smoothies and even cooked and sliced some organic beets! If you add them to a berry smoothie, the kids can’t taste them! Shhh… don’t tell my kids :)  The problem with all of this healthy cooking is that two of us in this family need to gain weight so it seems we now have to double our calorie intake and eat every hour.  Ha. Of course, this is not a bad problem to have! :)

We have not gotten the results back yet from Noah’s heart tests.  He continues to have more and more episodes though.  

Please continue to pray that God would sustain him until he gets his new heart.  We are thankful for all of you and your faithfulness to pray and support our family.  Your comments have been such an encouragement to us. 

- Melody

p.s. Thanks to Glenda Henry of Hartford, Kentucky for making the “Far West” quilt in the picture. Cheryl Lowe then sold raffle tickets for it and donated the money to Noah’s Heart! What amazing generosity! Noah pulled the winning ticket himself, which went to Jerry & Sandy Johnson of Hacienda Heights! All together…$500 was raised! Incredible!

On Monday, Noah was telling me about every ten minutes or so that his head and heart were hurting.

He experiences many different chest pain episodes on a daily basis, but his head hurting was a new symptom. He gets these shooting pains in his head often that last for about 30 seconds before they go away, but they are not headaches. I decided to call UCLA to let them know because they like us to keep them informed of any new symptoms.  They asked us to come in first thing in the morning.

Our appointment was at 9 a.m. so that meant we had to wake up super early.  If you know me well, you know I’m not an early bird :)  We met with the entire transplant team, including the dentist. Ha! Did you know a dentist was part of the team? Neither did I!  Pretty cool, since I actually had a few questions for him.  We saw the nutritionist, transplant coordinator, social worker, and doctors.  Noah had an EKG, echo, labs, and they put a 24 hour holter heart monitor on him that records all his heart activity. As you can imagine… it was an extremely long day.

The most exciting part of the visit was when the Transplant Coordinator told us that she had seen Noah’s name come up on the list several times.  WHOAH!!! That kind of took our breath away.

What does that mean?

When a heart becomes available in our region, UNOS will call UCLA and give them a list of names.  They call the first name on the list, and if they can’t except the heart, they go on down the list.  If your name has come up on the list, you are getting close!  This was very exciting to us, yet frightening at the same time.  It makes it all that much more real.

We learned that UCLA get calls for hearts often, but that they are very picky about which hearts they accept.  They want the absolute best for their patients.  We love that about them and it is why they are one of the top transplant centers in the nation.  We will keep you all updated on what the doctors find with Noah’s test results.

Our prayer is that he would remain healthy and strong.   Noah had such an amazing attitude today and was telling riddles to the doctors and nurses.  Reminded me of our Wicked Softball fundraiser when he was amusing all the girls with his jokes and humor.  He is so strong and knows God’s in control.

- Melody (Noah’s Mom)

Today marks four months that Noah has been on the list for a new heart.  

It has been a hard four months as we wait for a tragedy to occur so our child can have a heart that’s not sick. Honestly, that is the worst part.  It just breaks my heart that a parent is going to be in a position where they will be asked to make a decision to give the biggest gift to another person.  These days we live minute by minute – making sure our phones are charged and that we are ready to leave in a flash. To be honest though, I doubt we will ever be prepared.  

Last night, we took the boys to see the “How To Train Your Dragon” live arena show.  Sitting in the show of this crowded arena, I thought to myself, we could get the call right now and these sweet boys who are smiling and having a blast would be hauled away to the hospital.  Luckily. that was not the case. I wonder though every day what we will be doing when we finally do get the call.

We don’t always stress about it, but it certainly never leaves our minds for very long.   The only thing that gets me through those awful moments of thought is knowing that my Heavenly Father works all things for good and has it all planned out.  When I’m feeling completely overwhelmed, I cling to His promise. We have to continue to trust in His perfect plan no matter the outcome.  

.

I’m trying hard to “Surrender”. I struggle with the “wanting to know” and “wanting to have a plan”.  That is why I chose “Surrender” for my word this year. I believe God is stretching me to surrender to His way and His plan.

- Melody

We wish we had more to update you with, but there is not much to report on.  We are simply waiting for “the call”. 

Noah continues to do well, despite his occasional bouts with fatigue.  He is trying to stay healthy, which is our biggest prayer. Our hope is he stays that way so when we get the call, he is well enough to accept the new heart.

Last week we had a chance to spend some time with Aiden and his family for some fun dessert and fellowship.  Aiden is the boy we met at the transplant party.  He has the same diagnosis as Noah.  Now 8, Aiden had his heart transplant when he was just four years old.  We had a wonderful time getting to know them and asking more questions.  

We found out that the hardest thing post-transplant is adjusting to the taking of the many medications and adhering to the DIET. We were never told that the diet would be so extreme.  No sugar, no enriched flour, no dairy, and no fats.  Apparently these foods can cause diabetes and other risky diseases due to the high volume of immunosuppressants Noah will be on.  WOW!! Jason and I both felt sad for Noah and scared of having to drastically change the way we eat and shop.  Of course, as he always does, Noah accepted this news with such maturity. He asked a lot of questions about what he could eat and is already thinking of creative ways to make the recipes he enjoys. Which… if you have good recipes, please pass them our way!  

He really inspires and encourages me to have the same attitude and perspective when things don’t go the way I would like them to go.  I just love that boy.  He had the same response to his flu shot yesterday.  He truly is one of a kind.  I know, I know… I’m bragging, but I’m his mom, so I’m allowed! ;)

We had a wonderful Christmas though and are now feeling very hopeful about this new year.  We feel we are right where the Lord wants us and we will continue to press on and live for our King.  Seeking God’s will above our own.  We want to embrace this diagnosis and view it as a way to honor the Lord and allow Him to do His work through it.  

Last year, I chose “hopeful” as the word I wanted to embrace for the coming year.  I have to admit it was a struggle for me at times, but I feel like I have more hope going into 2013 than I did at the beginning of 2012.  The word I have chosen for 2013 is “Surrender”.  I want to surrender to the Lord’s will over my own.  Please pray that I would work on surrendering and laying my problems at Jesus’s feet. 

We wish nothing but God’s richest blessings for you all this coming year.

- Melody

My wife has been encouraging me to say a few words so I’m sitting here thinking of how to describe this past year for our family.

The word that comes to mind so clearly for me is “Thankful”. Let me be honest though. Over the past few months, there have been some days that I might have chosen some different words to describe how I was feeling.  Let me take a second though to share why I have chosen the word “thankful” overall.

I was asked a question by my son Noah the other night that made me think for a second. “How has God existed forever?”  I thought for a moment and replied, “How has God not existed forever?”

To me, the way you answer those two questions changes the significance of the word “Thankful.”  If God does not exist, then our family’s health issues have been nothing more than “bad luck.” I would then describe this year with words like “anger” or “unfair.”  It definitely would not be “thankful”.  But, if there is a God who has created all things and, as Romans 8:28closeRomans 8:28 28 And we know that for those who love God all things work together for good, for those who are called according to his purpose. (ESV) closeRomans 8:28closeRomans 8:28 28 And we know that for those who love God all things work together for good, for those who are called according to his purpose. (ESV) 28 And we know that for those who love God all things work together for good, for those who are called according to his purpose. (ESV) says, “we know that for those who love God all things work together for good, for those who are called according to his purpose,” then I have reason to be thankful. If this is true, then heart conditions and muscular diseases are not “bad luck”, but God working out His sovereign plan for good.  

With everything going on in our lives this past year, it has caused me to think more deeply about these things than ever before.  I recently read a book by John Piper called Suffering and the Sovereignty of God.  It is a collection of thoughts and reflections on the topic of suffering written by people who have experienced great amounts of it.  One entry, written by Stephen F. Saint, caught my attention.  He was the son of a missionary whose father served in the Amazon jungle alongside Jim Elliot (a movie called End of the Spear a few years ago tells their story).  When Stephen was 5 years old, his father was killed by the very people  he was trying to share the Gospel with. Through that situation though, Stephen and his family saw many of those same people eventually come to trust in Christ.

In his writings, much of his reflection is about losing his 19 year old daughter, Stephanie, to a traumatic head injury.  I want to share a passage from it that deeply impacted me. It’s not the easiest words to digest, but I would encourage you to ask yourself after reading it, as I did, “why the alternative would be better?”  After all, if God does not exist and is not all powerful (Sovereign), loving, and does not intentionally allow things like heart conditions to happen, why is that better or even more believable? 

“Why is it that we want every chapter to be good, when God promises only that in the last chapter he will make all the other chapters make sense, and he doesn’t promise we’ll see that last chapter here? When my daughter Stephenie was dying, the doctor said, “There’s no hope for recovery from an injury like this.” I realized that this was either the time to lose my faith or an opportunity to show the God who gave his only Son to die for my sin that I love and trust him. And then I watched. I watched my sweet wife accept this as God’s will and God’s plan. And you know what God has done through this? He changed my heart. He broke it.  He shredded it. And in the process He helped me see what He sees. I thought the worst thing that could happen in life was that people would go into a Christ-less eternity. There’s something worse than that. It is that our loving heavenly Father, the God and Creator of the universe, is being separated every day from those he desperately loves[…]”

Let me be clear – I am not thankful for heart conditions, muscular diseases, or any other “fill in the blank” conditions. However, I am thankful that these things are not simply “bad luck”, but within God’s sovereign plan in which He has a purpose. Part of that purpose is to reconcile Himself to us through His Son.  This is what should give us great cause for thankfulness. I know I am as my family begins another year.

Our family continues to be grateful for the many ways you all have shown your love and support for us.  2012 was certainly a challenging year for us, but we are truly blessed beyond measure by all of you.

- Jason

We have some EXCITING News!

Back in September, a dear friend of the Leitzau’s (Kelly), contacted NBC Reporter/Anchor Lucy Noland with a story request about Noah. Lucy’s response? “LET’S DO SOMETHING GOOD!” She pitched the story to management and they gave a thumbs up. Even better, in spite of her VERY busy schedule, she wanted to cover it herself.

She first met Noah in mid-October at our Pie Auction Fundraiser. Lucy and the Lietzaus took an instant liking to each other. Yes, Lucy even bought a pie and a couple of Noah’s Heart bracelets. She said the strawberry pie was DELICIOUS!

A week later, Lucy (and her NBC4LA cameraman Scott) met with Jason, Melody and the kids at their home, so that they had a quieter environment in which to get to know one another. Lucy spent time with Jason and Melody, one on one with Noah, and then the whole family while they got footage of them playing Cribbage.

Last week, Lucy called to say Noah’s story is going to air Christmas night at 11 pm, and again on the 26th on the 5 pm news. She will be anchoring that evening, and will introduce the piece herself.

To give you an idea of how compassionate and amazing Lucy is, we’ve copied a message she sent Melody a few days ago via her facebook page.

 “The blessing, Meody, is all mine. I give thanks every day for people like you, your family. Kelly reached out to my on this page out of the blue. I felt compelled to respond. I am so grateful that I did. I only hope that I do your family, your sweet boy, justice. Thank you for sharing your heart with us.”

We hope to get the story up on our website within a few days of its airing. Stay tuned and have a wonderful Christmas holiday!

- Noah’s Heart

P.S. You can see it on Youtube by clicking here

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