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,

Thursday, April 16, 2015

Thoughts on Faith, Part One

What is Faith?

The other day I met a lovely, friendly, intelligent Christian mom. She asked about Grace and I explained that Grace has cancer.

“I’m just going to say she doesn't have cancer,” she replied. She was totally serious.

“But she does,” I said, also totally serious.

“Well I’m believing that she doesn’t,” was her reply.

This has been a somewhat common response from the Christian community, but it still surprises me every time. As this isn’t the first medical crisis my family has experienced I can attest that this type response hasn't just been towards pediatric cancer. We’ve heard it many times, in many different situations, from many believers, in many different words.

The lady and I went separate ways and I didn’t talk to her more about it. Later I wished I had. Sometimes I have pretend conversations in my head when I’m trying to work problems out. My in-head conversation with this lady went something like this:

“Why don’t you want to say that Grace has cancer?” I pretend asked her.

“Because I believe that Jesus has healed her,” she pretend replies.

“But she has cancer right now. If we don’t say it, isn’t that just wishful thinking?” I say.

“It’s not wishing. It’s faith,” she says.

“But is it faith to pretend? Why can’t we say the truth? She currently still has cancer.”

“Because it’s not worth mentioning what is going on now. It’s faith to focus on the future of what God will do,” she says, not doubting that for a second that God will perform a miracle. And if the miracle hasn't happened yet then her belief system says that pretending is the same thing.

Somehow, somewhere, Christians were taught that pretending away reality is faith and that God never allows suffering into the faithful Christian's life. This type of faith is courageous but this faith has never walked the cancer ward at the children’s hospital. This faith hasn't seen the unanswered prayers of parents (even Christian parents) grieving when their children die. It’s the faith that many come into the hospital with, but they leave changed. I certainly changed...and my faith is stronger now for it.

Perseverance vs. Miracles

In modern, American Christianity we focus on the “blessed” parts of the Bible and I think we often ignore the parts that contradict our expectations of God. In the book of Acts I used to only see Peter’s amazing escape from prison and but I glossed over the fact that his dear friend and fellow apostle James had just been executed by Herod.  I saw the miracle of Peter as an act of God and the death of James as an oversight of God.

At most of the churches I’ve attended in the past the hard parts of the Bible were never explained as part of God’s plan. The hard parts were always assumed to have happened because of human sin, or divine oversight, but certainly never as an intentional part of God’s will. Because many Christians believe that God only wants us our lives to be full of “happy” and “blessed.” When pain or hardship came it was taught to me as punishment for sin, or the will of the sinner. "Bad" and "hard" experiences were taught to be curses, not blessings. 

If we look at John the Baptist, there is a lesson here that terrifies many Christians. John the Baptist sends word to Jesus and says, “Are you the Messiah?” (Messiah means the one who saves and has the power of God to do miracles.) In other words John was really asking, “Will you be saving me from death in prison?” Jesus’ response is one that many of us would see as a rejection. He doesn’t say, “Blessed are those who believe God will rescue them.” Instead Jesus says, “God blesses those who do not turn away because of me.” Soon John, whom Jesus said was the greatest man to have ever lived, is beheaded ISIS style.

We often miss the part that God blessed John through his death. We know that because John did not turn away AND he died as a result, AND Jesus’ words are always true that a blessing would come from God. Therefore the blessing happened.  It just didn’t happen here on Earth. What’s more, John’s death somehow fit into God's plan. His death was not caused by God, but it certainly was not stopped by God. Jesus did not rescue him. The prayer for a miracle was rejected.

Why am I saying this?

Because through our journey with Grace’s cancer we had many loving Christians respond to us with the unsaid belief that God only works through “good” things and that “good” things only happen when you have enough faith.  And when “good” things aren’t happening you should pretend they are because that is faith.

I don’t think that is faith. Or at best, it is a very small faith. I think it takes much more faith to glorify God in our suffering. Praying for miracles seems like it would take the best of our faith but trusting God in every painful moment is faith. Trusting that he has not forsaken us is deep faith. Trusting that he is good even when life is not good…that is a faith that can often only be born out of times of severe trial.

I believe that faith happens more in our brokenness than in our victories.

Wednesday, March 25, 2015

Maintenance Divorce

A friend who's daughter was in maintenance for ALL warned me that maintenance wouldn't be what we expected. "It's a LOT better than chemo," she said, referring to the first year of treatment, "but it's still not normal life."

I had no idea how true her words would be. We were oscillating between "normal" and "hospital" life in early January when Grace made it to maintenance. Several weeks later she was back to preschool, with very few hospital visits and we were loving having life together as a family again. She came out of last year with only her GI nerve-endings destroyed (nueropathy) but otherwise no long term effects from the chemo that we know of. Life was nearly normal and it seemed like we had woke up out of a bad dream.

She was so thrilled to return to preschool. Little Miss Independent started preschool at age 3.5 and never so much as looked back for kiss or hug her first day, and it was the same when she returned nearly a year later. Several weeks went past and Grace was as happy as could be.

Until the day she had her first panic attack. Looking back we think it was because her teacher was out sick for two weeks and a substitute came in. It was a familiar aide, but we think the disruption was too much. Every morning was filled with tears and panic and fear for three weeks . Every night she was fretting over the next day, even though she only went to class three times a week. The fear of being afraid had her on edge every moment.

We finally worked through that. We talked a lot, prayed a lot, and went to the playground a lot to try to build her confidence mastering skills like climbing and slides. Finally Grace was able to go to school with a few minimal tears that were quickly dried after a hug from her regular teacher.

Then it began at home. "I hate you!" never sounds worse than out of the mouth of a five year old. "I'll break all the things you like! I'll hit you! You hate me, don't you?" I was literally reeling at the intensity of her emotions and the sudden onset. Within a week I was hearing this several times a day from my little girl and I had no idea why- no steroids, no hospital time, no new changes.

So you can imagine when I was up at four in the morning that I was praying like I've never prayed before. I prayed for wisdom and restoration for my relationship with my daughter. My whole soul ached. And God gave me answers.

I had been so eager to return to normal life. I was trying to prepare her for starting kindergarten this fall. I was enforcing rules again, expecting her to work as a team member in the family again, having my own personal time again. God showed me I did too much, too fast.

Before she started school again she was at home with me twice a week while her brother was in preschool. She also stayed home from church on Sundays and got one-on-one time from a parent while the other was at church. She also got lots of personal time during the many hospital visits. Within a very short time theses all went away. To me, life went back to normal. To her, hospital life was the only normal she could remember.

She took it as if I had divorced her. She was a scorned lover trying to act out feelings too deep for a five-year-old to understand. She didn't have skills to say, "I miss just being with mommy." When I realized this my heart broke. I was so sad for my girl and finally understood what she was dealing with.

So I slowed things down. We spent Sunday morning doing girl-time by painting our nails and watching cartoons. I've been trying hard to play with her more, even if it means I'm doing less laundry and dishes. I'm spending more time doing our nightly routine, singing and giving her foot massages, just like I did every night in the hospital.

Conversely, I'm upholding strict consequences for talking rudely without remorse. She had a night when a babysitter came over to watch her while her brother got to go to Grandma's for dinner. We're teaching her that she can control her anger and that if she can't be safe with her words all the time than she can't be around Grandma (or others who are super-duper fun) until she's had more practice. She did great with the sitter and was able to have a special date with Grandma the next day.

Every time she threatens to lose her cool we remind her that she can practice with the babysitter again if she needs. That gets her attention enough for her to think before she talks. She knows it's ok to make mistakes as long as she apologizes, stops the bad action, and tries to make it right. She's still making mistakes, only she's learning how to vent her anger without hurting people. She's learning to pray for help when she feels out of control. She's learning she's smart enough to find solutions and that she's stronger than her emotions. She's learning that Gracie is a pretty amazing kid.

I'll still be actively working to help her ease into her new life. I'll be looking for ways to find one-on-one time with her. I'm giving her more random kisses, more random hugs, more secret smiles that let her know I think she's fantastic. I'm praying that the consistency of my love will help her through the rough transitions and that slowly she'll need less of me, though not less of my love.

Saturday, March 14, 2015

Fear of Preschool

I think Grace had an anxiety attack last Friday at preschool. Less than an hour after drop off I got a call that Grace was feeling sick and crying and couldn't be comforted. Grace LOVES preschool so I assumed that it had to be the flu or due to her continuing battles with constipation.

When I got there she said to me, "I needed to know you were near by." That was the first red flag. The second was that her appetite was fine and her bowl movements normal. So I made it the most boring day in the history of her life, at least her life at home, so that staying home sick would be less appealing. I told her that she really needed rest and that toys would be too much, so she could read books and color from the couch. She had an early nap time. She even asked if she could go back to school but I enforced a day of rest.

I talked to her doctor about it Monday, since many kids come out of cancer treatment needing counseling to readjust back to normal life. That may end up being an option for her. Chad spent a long time talking with her Monday night and was able to pull more details out. It sounds like the preschool's hour-long-mandatory-nap-in-a-dark-room (required by law, thank you bureaucrats) may be hard on her, since she doesn't always actually fall asleep, and that crying during nap has given her the fear of...fear.

She's afraid her teacher (whom we love) will be mad at her if she cries. She's afraid of her friends who might say she shouldn't cry. She's mostly afraid of the feeling of being afraid. And fear is a vicious cycle.


I've been going to workshops at my church and they've been dealing with topics like fear, anger, depression. Fear is certainly a struggle for me. They pointed out that the feelings of fear are often what we dread the most. For me, the feelings of uncertainty if Grace would survive or not were unbearable. Avoiding these feelings of fear can be a daily driving force for me.

The fear is in no way helpful, it can't change anything. The feelings of fear are even less helpful because the emotion of fear was created to alert me of danger, and there is no present danger anymore. It's only reminding me of what has been and is keeping me from the interactions with people and life that I need. I can try to talk myself out of feeling fear but as my workbook says, "without changing the heart, the actions become simply behavior modification that will fall apart if challenged hard enough."

God is working deep in my heart to heal my fears, not just in "trying harder" but in healing me with His truth. The church workshop and counseling with my Therapist have both told me that when you see a symptom (like fear) grab onto it and follow the string backwards until you reach the root, where the heart issue really lies.

So my fear is that Grace will die. As I trace it back, I see that it is not a present threat. Grace hasn't been this healthy since diagnosis. So the fear is residual and not present.

So I follow it back further. The fear comes back to when Grace was sick. The fear isn't just about Grace being sick. It's fear of death, or actually it's the fear that through death I will be separated from her. That fear can be taken hold of when I apply God's truth to it, that He has overcome death and will reunite us in Heaven when we trust in Him.

Then the next fear is loss of control.  I can choose to fight for control, when I have NO power to change cancer, or I can daily give up my fears and do my best to trust Jesus, who does have the power to control things. And has been controlling things since the beginning of time without my help.

Finally there is the fear of fear itself. That terrible feeling of anxiety and worry were so draining, I get fearful of the feelings themselves. So I tell myself that Jesus was able to carry us through it then, He will certainly do it again if needed. So I banish that fear with the truth.

It's not that I won't feel the feelings. But as I lay my fears down, my heart is protected by the truth of His words. Tomorrow I will have to do lay my fears down again until my heart heals.


Monday night, Grace prayed that God would help her to put on her helmet and her belt. I asked if she was talking about the Armor of God, and yes, she was. I was so blown away as we prayed together for God to arm her against her fears with the armor of His love, salvation, peace, truth and righteousness. And Tuesday was a great day for her. She goes again today and hopefully our tactic to keep the kids up a little later every night will help them nap at school and solve the problem. I talked with Grace about 1 John 4:18, "There is no fear in love, but perfect love drives out fear." To keep it simple for her, we talked about how Jesus is love and when we pray to Him, he helps get rid of our fears.

So far it's been a battle for her everyday. But I know that overtime as she works through her fears she'll find she's stronger than she realizes and that she can overcome her fears.