Sunday, July 12, 2015

Thoughts on Bailey's death

I am struggling with Bailey's death but for the first time my faith isn't shaken to the core and unlike before I am not spiritually devastated that God has said no to our prayers for a miracle. Maybe it's because I felt in my heart that God was preparing me that he was going to be taking her home. Maybe it's because she was in so much pain that death was actually relief rather than a curse. Maybe it's because I believe in heaven more than I used to. Maybe it's because I believe in Jesus more than I used to.

And though I am less spiritually devestated, my heart is very, very, very heavy. The pain for me is still very real. 

But I know for many people, especially those who are not Christians or who are new believers, Baileys death is an obsticle to trusting God. I think people want to know how they are supposed to trust a "loving" God if he allows precious, vulnerable, and pure babies to die.

I am not a theologian, pastor or pillar of faith. But especially tonight while I sit next to Grace as she sleeps in her hospital bed, I can say that I've learned a few things through our journey with cancer. Many of my happy-feelings-only-faith has been burned away in a crucible of hardship and the truth of who God really is remains. The thing I've learned the most is that Jesus can be trusted, and that he is faithful in his love for us, even when pain and death are part of our lives.

When we suffer Christians often turn to Genisis in the Bible because it explains that we live in a broken world. The Bible says that Adam and Eve opened pandora's box and sin entered the world like a disease that will only be cured when we reach heaven. It's true.

It's also true that mankind has been very unfaithful, very unwise, and even blatantly cruel to the Earth that God entrusted us with to care for. The principles in the Bible are against things like farmers reusing fracking water for growing food, because the Bible promote seeking wisdom over profit. GMO crops continue to be sold unlabeled though the Bible commands that we "shall not lie," and world leaders allow people to starve though the Bible says we should "do unto others as we do unto ourselves." The results of rejecting God's help are cancerous to our land, our bodies and our souls.

But most of us don't like being told what to do and for the most part we see God's Bible as being harsh, cruel, outdated and often confusing. Yet the medicine inside that book would heal our hearts, our families, our society, and our land. In in return we would live in the constant blessings that come as a result of following God's ways. I don't personally believe God is "cursing us" are a punishment for sin, I just believe that we reap the compounded-deeply-connected-domino-effect results of rejecting his help. Still when our world falls apart we shake our fists at God.

We continue to blame God for things like cancer, preventable disease, starvation. Many of these things are the result of living in a world broken by the original sins of Adam and Eve but we have also created our own toxic, warring, selfish world. Let's stop blaming God for the part that we as humans can own up to. 

But then the question still remains, even if we deserve the consequences of our mistakes, and if God loves us, shouldn't he help us? Can't he heal us? Does he care? There are a few answers to that. 

My previous teaching from Christians has been that "by Jesus' stripes (his crucifixion and resurrection) we are healed." That verse is often used out of context by christians who use it to justify their belief that God will always answer prayer with miracles. But the verse is actually talking about our sinful hearts being healed because Jesus' death on the cross paid our spiritual debts. Many Christians pray for miracles, believe for miracles, and are spiritually devestated when God doesn't answer with miracles. For many Christians their reality is a contradiction to what they believe the Bible says.

In the Bible Jesus heals. A lot. A lot of people in outrageous ways from horrific diseases and conditions. And from what I hear he's still doing a lot of miracles in other countries. Good sources have well documented and medically verified miracles all over the world. But not so much in America. I think it's because we think with our hearts and emotions but we don't trust "stories" or even our eyes. We have too much CGI and the few miracles I've witnessed are brushed off by skeptics. But what we do see in America today is God allowing himself to be felt by people. His undeniable, can't-explain-it-away, in-his-presence-felt. And because of it lives are changed and people are reconciled with God. But to many that doesn't qualify as a miracle. They want something tangible.

Which brings me to another thought. Jesus knows heaven. To us it's a concept, but to Jesus it is tangible. He knows that this world is like a dream that you hardly remember when fully awake. Heaven is the real, this life is the dream- just not to us still on earth.

So I think we're really offended when Jesus takes people away from this earth into heaven, especially when he takes precious babies like Bailey from their families. The seperation is devastating to us. It is to him too. It seems to us that Jesus  is not answering our prayers but to him, he is bringing them to the real miracle. The real miracle is a forever home where pain, separation, and death are conquered and where his love for us is made completely known. Heaven is the miracle. 

But the problem continues that heaven is conceptually unsafe for us to believe in because God himself seems distant, untrustworthy and unsafe to those who have not personally met him. If we don't know the father, then why would we care about being in his home? If we can't experience God in this life than how do we know heaven isn't just wishful thinking? The only answer is to meet him. To know him. To start to trust him. Only then we can feel like death has "lost it's sting" and that heaven it is our true home. 

I have had several friends who were interested in Jesus. They had done some research, felt like there was some hope that Jesus might be the real deal, but they still couldn't entrust their whole lives to him.  I don't think anyone can come to trust God on their own, not really, unless God shows up to help. 

I told my friends that coming to trust Jesus is a lot like learning to swim. You can read about a how to swim, you can watch videos, you can splash in the water. But until you really get in the water you won't ever learn to really swim. A life with Jesus is like that. You can't know him from a distance, you have to get in the water- and more than your toes. I encouraged my friends to jump in and try him out. If he's a fraud then just walk away. There isn't much to lose except maybe getting a little wet. But if he is God...then he'll teach you how to swim for real. I just wanted to throw that out there for anyone who has been searching but afraid to start. My advice- just do it. Give God the opportunity to prove himself to you. Not to be your magic miracle genie, but to be a trustworthy friend, a loving father, a healer of your soul.

Jesus' main purpose for coming to earth was to be one with us in suffering so that we wouldn't be alone. He came to pay our debts so that all the mistakes in our world would no longer separate us from the fullness of God's love. Being surrounded today by children suffering from cancer I can say, that at least for us, that God's peace has comforted us in our grief, his presence has overcome our fear, his love has been sufficient to sustain us in a very hard, cold world. He is who he says he is.

So even though my heart is broken about Bailey, I do not despair. God wasn't cruel to her. He hated her cancer more than any of us ever did. He has grieved her death more than any of us ever will. But he has not abandoned her. She has beat us all to the prize. 

And through my tears it's this truth that gives me peace. I'll be smiling with you again soon Bailey-boo.

Thursday, June 25, 2015

Praying for Bailey


God has been working on me. If you've ever read my other posts, you know I don't like to pray for miracles. I REALLY don't.

I've prayed for miracles that didn't happen. I've struggled with feeling of intense inadequacy about not having "enough faith." I've felt fearful that God would fail and all of my faith would be proven worthless. I have felt intense pain, almost like the pain of betrayal from a lover, from the disappointment of unanswered prayer.

I had decided that it was better to trust God to be with us through our trials, rather than face all of my fears to pray for the miraculous. And in some ways, there's truth to that. But it was too painful for me to pray for miracles, so I didn't. But I'm praying for a miracle for Bailey like I've never prayed before.

Before I went to therapy I was a master at silencing my emotions. I could turn them off and go numb. It was a coping mechanism that had outgrown it's usefulness, but I didn't know how to stop doing it. For homework my therapist told me I had to list out all of my feelings every day and that "fine," "bad," and "tired" were not emotions and couldn't be used on my list. I remember about this  same time my heart started to feel again and I promised right then that I would never allow myself to purposefully go numb ever again. But I have broken that promise.

When we heard the news several weeks ago that Bailey's cancer was winning I couldn't feel it. I didn't purposefully go numb, but I didn't stop myself either. I wanted to be strong for my friend Julia and I knew she didn't need a friend crying on her shoulder as much as she might need a shoulder to cry on. I wanted to be strong so that I could take care of Grace as we've been battling constipation again. I wanted to be strong because I was so afraid that if I started crying I might never stop, and that frightened me. I was too afraid to feel.

Today God reminded me that it is safe to feel because He is able to guide me through it. I know he wants me to enter into life fully and that means feeling pain too. I've renewed my vow not to go numb (though I will certainly pick the time and place of when I am safe to feel, so that I can cope).

Additionally, a few months ago at church God told me it was time to get wet. I had an image in my mind about the apostle Peter getting out of the boat to try to walk to Jesus, that time Jesus was walking on water. And Peter sank. I always saw that story as Peter's failure. But God showed me that besides Jesus, Peter is the only other person who has ever walked on water. He got wet, but he also got to experience something amazing, even if only for a few steps. I felt like God was saying the miracles are in the water and I will have to get uncomfortably wet to find them. I hate being uncomfortable. But I want to see Jesus at work even more.

So this week has been hard. I've been wet- putting all of my fragile faith into praying for a miracle Bailey, even should it mean that I come away with my faith wounded. I've allowed my heart to feel, even should it mean that I come away with my heart wounded. The only relief I've found has been in worship and in prayer to Jesus. Though my heart is aching, I still feel peace.

I still don't know that God will heal Bailey. But I do know who God is, and he is a very generous God. For this reason I am joyful in hope, patient in affliction, faithful in prayer (Romans 12:12). Sometimes God will do miracles, simply because we are bold enough to pray for them. That's why we will be praying the Saturday at the candlelight ceremony. I know my heart will be very vulnerable that night, and I've given it permission to be that way. I will be outside my comfort zone, putting all my faith in one basket- because my faith isn't in the miracles, my faith is in Jesus himself. And in His goodness I have no doubt.

Though His ways don't always make sense to me, I know that the cross still stands as a reminder of his ultimate promise- that neither life or death, neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all of creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.




Tuesday, June 16, 2015

The Los Angeles Zoo and CHLA



Grace, Luke and our friend Nati got to go to the Los Angeles Zoo, courtesy of Children's Hospital Los Angeles to meet Rhonda the Rhino, who also had cancer. The kids got to hand-feed Rhonda. And if you didn't know, the mouth of a rhino feels like the mouth of a monster-sized, super-slimy slug. We would have never guessed that a rhino's mouth feels so very, very, very WET. And it sneezed a lot on us too.

The kids thought she was great. They were fearless feeding her and Rhonda proved to be very friendly. We also got to pet a harbor seal and a sealion. After our special visits we were given a private tour of the zoo with our own docent, Ms. Vikki, who drove us where we wanted to go in our own golf cart. The kids liked the cart rides as much as anything!

The following week the Zoo was opened to all the families of CHLA. It was after the main zoo had closed and included free dinner, free dessert, unlimited carousel rides. It was AMAZING. First, having kids who can't get out often is really isolating. But everywhere we went we were with other families just like ours. In fact we knew someone everywhere we turned. That felt amaing. Then they had it at night. Grace sunburns easily from her chemo, so having it a twilight took a load off my mind not having to worry about the sun. Plus, since everyone was a CHLA family, we all understood that none of us could be there and be sick, so we didn't have to worry about sick kids sharing germs with our immune-compromised kids.

Everywhere we went families were laughing and giggling. All of us needed a break, and all of us were thrilled to have it, especially with each other. It was really a great time. Grace was literally running around the zoo the whole night with her hands in the air yelling, "best day ever!"

And it was.










Sunday, May 24, 2015

The Control God


These last two weeks were hard on me. Actually the last month has been rough. We've had an ER trip when Chad fell off his bike, two asthma specialists visits with Luke and round the clock asthma treatment, Grace spent two weeks in pain (especially at night) from the constipation which as two weeks of me battling her doctors so that they would treat her sooner rather than later. That's over two weeks of interrupted sleep culminated with an inpatient trip to the hospital which guarantees no sleep.

I'm rather exhausted. (Though I can't complain much compared to my other cancer mom friends who are still in active treatment).

And angry. Unreasonably angry and easy to frustrate. Even though I'm sure some of it is because I gave up coffee this week, it's been more than that. Everywhere I look around my house I'm aware of laundry piles, my clothes not fitting anymore, dishes not done, messes on the table, messes under the table, work deadlines gone past, and two kids running around half-naked while we're 15 minutes late to church. I thought I was going to go crazy this morning and I had to work so hard to not do or say something I'd later regret.

When I got to church today I was praying for help. For God to take my anger and show me my own heart. And he did. It came down to control. The last few months before this one have been so nice. Life had fallen back into the pattern that my A-type personality thrives on. I was caught up on the bills, mail, email, deadlines, laundry, dishes, and I was making great meals every night. I was really on top of my game. Then this last month hit, and especially with Grace's inpatient stay, and all of my control went away.

To compensate I tried to get more in control. I tired harder, stayed up later to do chores, did more, pushed harder. And the more I've fought to get control the more unhappy I've become. I really thought that if I could get my life clean and organized I would be happier. It wasn't working.

God showed me today that I've made control my "god." I've been putting my faith in me controlling my life. And I feel that He's let that sit very uncomfortably with me these last few weeks until I realized it wouldn't work. It's not an issue of dishes and mismatched socks, it's a heart issue that I am unwilling to let God lead. Because he's lead us through cancer and I just get scared sometimes that he'll lead us through it again. But if I don't trust God, I manage to make my life (and my family's life) miserable.

I spent a lot of time in prayer (which for me means about 15 minutes since I'm very ADD when it comes to prayer) and I really feel more peace. So much so that when my kids had several fits this afternoon I was able to discipline them without them getting under my skin. They're no longer a threat to my control because my God is now in control again and two kids who collectively don't add up to ten years old aren't a real threat to His plan, even at their worst. My life around me may be out of control but now that I've given control back into God, the outside threats aren't threats, just bothers.

I know that it will take a lot of practice for me to keep giving control back to God. I also know that I need to rest more. Now that He's in control I don't have to work so hard so I can get the rest I need. And I need it. And coffee. Which I'll give up another week.

This week I vow that my life will be messier and that I will trust in God for everything we need. It will exceed my comfort zone, but I keep finding that real and lasting happiness is always outside my comfort zone anyhow.


Monday, May 18, 2015

The Scary Clown


Psalms 68 4-6

Sing to God, sing in praise of his name,
extol him who rides on the clouds;
rejoice before him—his name is the Lord.
A father to the fatherless, a defender of widows,
is God in his holy dwelling.
God sets the lonely in families,
he leads out the prisoners with singing; 
but the rebellious live in a sun-scorched land.


I knew that we'd end up back in the hospital when Grace threw up for the third time that week with lots of pain and no fever. I was relieved that she'd finally be getting help and that I wouldn't have to keep calling, reexplaining to each different nurse who took the Fast Track calls, and trying to convince them that Grace's wasn't ordinary constipation that could be cured with laxatives. Although I was glad we were going back I had hoped that we wouldn't be doing hospitalization stays anymore. It resurrected many feelings from last year.

Driving to CHLA I spent some time praying. I asked God that if He could use us at the hospital during this visit, that He would. Especially since I knew that our stay wouldn't be fighting for Grace's life and that I'd have a little more to give, so I prayed that God would arrange our stay so that His will would be done, and that our time there could help someone else. 

When we were admitted the sun was just setting and the city lights were starting to glow. We had an East facing room on the pediatric cancer floor, four stories up. Everything in the room seemed exactly as it was the last time we were here. Lisa, our PCSA  (nurse assistant) that night started taking Grace's blood pressure and temperature. From her bed, a good ten feet from the window, Grace looked outside and exclaimed, "that's a scary billboard!" Lisa and I both looked up and saw the "Poltergeist" clown which I think is scary too.


"Grace you solved the mystery," Lisa said, "there is a three-year-old girl next door who has been crying all day saying, 'the clown in scaring me,' and 'please make the scary clown go away,' and we have not been able to figure out what she was talking about." After she finished taking Grace's vitals she rushed out of our room to the one next door. Finally she was able to make the clown go away.

I was very proud of Grace for helping the other girl and told her so. But I was very upset about the billboard company who approved such a scary poster in plain view of a children's hospital. These kids have very frightening, and very real, life-threatening fears to deal with. We lived at CHLA last year for over three months, but many of the kids at the hospital live there even longer. Often their only connection to the outside world is the one window in their room. They shouldn't be terrorized by a scary clown when they look out to the rest of the world, especially as they fight for their lives.  

I took a photo of Grace with the billboard behind her, as she sat on her hospital bed, right before the thunderstorm hit. I posted the photo to Facebook with the name of the billboard company and their phone number and asked everyone we knew to call and complain. I went to bed expecting to have to call some more the next day. I was ready for the fight.

When I opened the shades the next morning I couldn't believe my eyes! There was a white billboard! The scary clown had been taken down, in the night, in the rain. I started to cry. I hadn't really expected any resolution, especially not overnight. Someone heard our plea to help the kids at the hospital and cared and did something at great personal cost to make it right.


I later discovered that the Hermans, our new friends from Camp Ronald McDonald, knew an executive at FOX and called him to let him know about the situation and he worked quickly to take it down. He also sent gift bags over to the hospital to apologize for the mistake.   

As I got thinking about it, I realized a few things:

One, the power of people working together gets things done. 

Two, that God heard the cries of a scared three-year old and put a plan into action to help her. He brought in a team to help her. He used Grace and her excellent communication skills. Lisa and her knowledge of the girl's cries and who was there at the exact moment when Grace noticed the billboard. Me and my iPhone camera. All of our Facebook friends who called. The Hermans who we just befriended and their connections. And finally the top executive at FOX. All for a three year old who was scared. 

God has shown his tenderness to us so many times, and this most recent example has really touched me. He is a God who takes personal interest in the small details of our lives. He listens to the unstructured, unreligious, small cries of a three year old.  He doesn't assign us to an angel and put our requests through the bureaucracy of heaven. 

"The righteous cry out, and the Lord hears them; he delivers them from all their troubles." Psalms 34:17




Thursday, May 14, 2015

Inpatient again

We're back at CHLA inpatient today for constipation.  Grace has been amazing. 

Tuesday, April 21, 2015

One Year Ago, April 2014



April 21, 2014 

One year ago Grace received up to 10x the regular dose of chemo to combat her aggressive Leukemia. She was so weak that that she had to be carried, even to the bathroom. She stopped getting out of bed and soon she stopped playing all together, hardly even talking. Television became medicine to help the hours pass unnoticed when she wasn't sleeping.



She started to get shots in her legs every day to help her body produce white cells. She had nightmares about them and talked in her sleep about them when napping. According to one nurse the medicine inside the shots stung as well as the shot itself. In the photo above Grace is holding the Princess doll she got as a prize for her shot. We figured a daily $7 prize would be cheaper than long-term therapy for PTSD and it helped her to have something to look forward to, instead of dreading the shots. She was so determined to be brave when she got them, even though she cried and screamed.

She also had to get an IV in her hand in addition to the port because they couldn't run morphine and the IV nutrition in the same line (or something like that). If it wasn't midnight, it was near to it when they woke her up to get the IV placed in her hand. They work around the clock at the hospital. I took her to the bathroom right before and she came out chanting, "be brave, be strong." And she was brave, and very strong. 

I remember the doctors and nurses having to convince me to start her on morphine. It's just a word you never imagine for your child. Then I realized we had just spent the last week pumping her body full of poisonous chemo, so morphine really wasn't much worse. The morphine didn't cover all the pain, but it certainly helped, and I was very thankful for it.


Unfortunately the morphine causes constipation and the PEG chemo she had caused pancreatitis. Her counts dropped and she had blood transfusions often. The sores in her mouth allowed infection into her blood stream and she developed a staff infection. The Vancomyacin antibiotics used for the infection gave her "red man," which caused her to turn red and itch like crazy, so Grace was given Benadryl before each dose. Thank God for Benadryl because she slept for hours during the day allowing her body to heal and to be absent from the pain. 

I remember her oncologist coming into her room one morning to review her charts and to check up on her. I remember her saying, "Well, she has pancreatits, constipation, a staff infection, the flu, and severe mucositis, but overall she's doing pretty good." I looked at her in disbelief. I didn't realize that at the time that as long as you're not in PICU, you're doing pretty good. Staying out of PICU became my new definition of good.

During our stay we used what we called "mommy medicine." We found that if I was cuddling her, her pain became more manageable and her stress levels stayed down. So we cuddled day and night except for bathroom and food breaks. I sat with her in bed during the day and slept with her in bed through the night.  I also found I could silence the medicine alarms and page the nurse more easily from her bed. I could also help Grace go back to sleep quicker after her 3x a night blood pressure and temperature checks if I slept next to her.

Grace's mouth was covered in sores (similar to canker sores) and her mouth was beginning to swell. She started to eat only soft foods. Eventually she stopped eating and drinking. It was too painful. Her cheeks, the roof of her mouth and the top and bottom of her tongue were completely white from the sores, and that was only what we could see. By the end of the week her entire mucus tract (from her mouth through her GI tract) was covered in sores, which is called Mucositis. When her platelets were low her mouth would ooze blood through the sores until her mouth was a sticky, bloody mess. 

This is a journal entry from April 27, the day when she needed platelets so badly:

I memorized "Great is Thy Faithfulness," and today I was singing it in the hospital elevator when I went to get my coffee. "Morning by morning, new mercies I see. All I have needed, thy hands have provided. Great is Thy faithfulness, Lord unto me..." 

Last night, or rather at two in the morning today, Grace had to go potty...In the light of the bathroom I noticed her mouth was a bloody, gooey mess. I called in the nurse who called the doctor who ordered platelets for her. Within an hour or so she had a transfusion. ...

Yesterday I was cranky, lonely, bored, and tired. I was so ready to go home and be a family again. But when she needed the platelets all I could think was how grateful I was. All my anger and frustration melted, none of it mattered anymore. I am so grateful to the person who donated the platelets. And for the nurse who acted promptly. And for the doctor who was up all night so the order could go through. And the blood bank person who made sure it was a good match for Grace. I was overwhelmed with gratitude that all these people are protecting my daughter.

This morning God acted in His faithfulness to help Grace. He didn't look at my unfaithfulness, He worked off His own goodness and His promises to me and my family. I wish we weren't here. I wish Grace wasn't in constant pain. I wish a lot of things right now. But what matters is that she needs help and God has us in a place surrounded by people who are helping. His mercy is all we have needed, and He has certainly provided.

We lived in the hospital for three weeks that first round of chemo. Then we went home for the weekend to rest, then returned for another two weeks, and then three weeks again after that. Finally she had finished her "chemo-bombing" and was able to return to normal doses of chemo.

This year is so different. It's hard to revisit these memories as they are still very painful, and sometimes it revives fears of relapse, but I am always encouraged when I see that God was so present with us. His peace would cover my fear like a warm blanket on a shivering child. It was almost tangible some days. He provided strength and courage far beyond my capacity. I am so thankful to be able to look back a year later and see Grace is so much better, but I'm also grateful to look back and find Jesus in the hardest point of my life.



Dear Jesus,
Thank you for bringing us through last year. I pray we'd Grace would have to go through chemo again, but I know that you would be with us if she did. You would never leave us. Your mercies would sustain us and You would certainly provide your presence and peace.

Please help all of our friends who are there at the hospital today, or who are recovering at home. We pray for Bailey, Nati, Conner, Selah, Emi, Riley, Lilly, Kaitlin, Brandon, Hazel, Brooke, Bell, JoJo, Hannah, Valentina and all of the children at CHLA. Please help relieve their pain, their parent's anxieties, and heal their little bodies.

Thank you that your death on the cross has made the promise of heaven attainable to us, and that in heaven both cancer and death are conquered.



In Jesus' name we pray,
Amen