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.

Wednesday, March 11, 2015

Grace's mommy is going to Brave the Shave!

Hooray! Grace's Mommy is going bald to raise money for pediatric cancer research!

So far we've raised $4300 in donations! That's money going into research of why cancer happens to children and how to cure children's cancers. Because the National Cancer Fund only gives 3.8% of it's funding toward pediatric cancers, private funding is critical to save lives!
Does anyone want to join the Team Grace and shave their head with us on March 21 in N. Hollywood? Let us know ASAP. Men, women, and kids are all welcome to brave the shave for Team Grace Ellen!
If you'd like to help us reach $5,000 please donate to St. Baldricks:

Friday, February 27, 2015

Identity Crisis

Grace and I are both having identity crises.

"Hi, my name is Grace and I have cancer." That's how she introduces herself these days to everyone at the park. The adults never know what to say. I'd like to say, "actually Grace, your last name is Bumstead, not Cancer," but I haven't directly approached the topic yet. Mostly because I don't know what to say. I'm hoping that over time she will begin to have her identity shaped by being herself and not by life in the hospital.

I am also having a crisis. I didn't realize it, but the symptoms prove it. I'm going to church, but the whole time during worship I'm thinking of other things. I'm finding ways to avoid intimate prayer. The thought of being open before God is terrifying. And it's guilt. I'm avoiding God because the shame I feel around Him is crushing.

I think that in the beginning, when Grace was first diagnosed, I happened to be in that amazing understanding that I knew that my relationship with God was really held in place by His mercy and His faithfulness. My identity was safe being human and God being strong. That was a very safe and tender place to be. I knew it was him carrying me, and I certainly needed it..

Somewhere along the line I decided that I should be perfect. I decided that I had to do a "good job of being a Christian under distress as an example of steadfastness to the masses." I lost sight of the truth that He loves me because He is love. I took my identity out of being His Ragamuffin and instead put it into self righteousness. It was at that same time that life became very scary for Grace and I began to doubt that God had ever loved us at all. The shame and guilt I've felt for doubting Him soon turned into shame and guilt over everything in my life that wasn't perfect.

I know that it's normal to doubt God, and I know He forgives me, but I haven't forgiven myself. It's not just something to forgive. It's my identity itself that needs to be reshaped. I don't think it's something that can be healed overnight. It's not a matter of facts or hearing/saying the "right things" to make me "feel better." It's not reciting Bible verses or knowing the right answers that will heal me.

It's a process of remolding my identity into the truth of who God is and who I am in him. I am going to start waking up before the kids and drink my tea on the porch while wrapped in my fuzzy purple robe. I am going to only focus on the truth that God loves the lost, the broken, the hurting, the doubting, the imperfect. And I will allow myself to be all of those things, because that is who I am.

I know my heart will heal as I realize that God accepts me - the real me- and as I commit to finding and accepting myself. I think that the more I do this, the more I will be able to open up to God. I feel confident it will work, because that was how I first found salvation...and have found it numerous times again since. Except I didn't have a fuzzy robe back then.

And I know Grace will heal too. I'm comfortable with cancer being a part of who she is, because it is, but I hope her identity becomes less and less about the cancer and more and more of just Gracie.

Friday, February 20, 2015

Becoming a regular mom again

I've been in the process of becoming a mom again to two kids, now that we're home more. 

All of my life I've struggled with Illusions of Grandeur...or actually, the pursuit of it. That is to say, I've always needed to be the best. Not that I was, but I had the ever present desire to be important, respected, accomplished, successful...to be a "someone."  Within the last two years God has been telling me that I need to learn what the term "content" means. I had Bible verses about it all over my fridge, trying to heal from my need to be seen as a success. But I wasn't able to change my heart as much as I tried.

Last year that need in me died. In a big way. All of my priorities have shifted and now all I want is to obey God, love my family, and do my share to take care of them in whatever menial way that God sees fit. To have my family together is really what life is about for me. I don't need to be anyone except a mommy.

Though I still hate doing laundry, despise dishes, and dread mopping my floors, I do it with much less grumbling. I've started to see that by obeying God in the small things, and not needing more, I am finally happy. Instead of striving for happiness I've found it in the menial, repetitive, unnoticed tasks of being a mom.

I was thinking today about how God loves the unnoticed. He always picked the most unlikely characters. He never went for the most attractive, or the richest, or the smartest. In fact, I can't think of a single time that God picked the cool guy.

By today's standards even Jesus would be a total failure. He didn't win over crowds (he dispelled them as soon as they were gathered with hard concepts like, "you have to eat God.") He wasn't respected by the religious elite. The Word of God didn't publish a single book in the Bible. The Healer didn't have a respected practice in Beverly Hills. The Light of the World mostly hung out with the sludge of society. Jesus was not successful.

And yet Jesus is everything the Father desires, and his unsuccessful life brought God glory. When we obey God, even when it's totally unnoticed and when it doesn't earn us respect or success, it is exactly what brings the Father glory. And he accepts that as glory, from unremarkable people like us doing unremarkable things like doing the dishes with an attitude of praise.

In becoming unimportant, and by embracing that, I'm happier about being a mom. The interruptions and setbacks (poop in the tub, swallowing legos, sand all over the clean floor) are less of setbacks and are now "part of the territory." So I'm not as cranky at the kids. I'm enjoying them more and trying to escape less. I'm not trying to fast-forward through my days, but best I can, enjoy my family. Not that I always succeed, but it's not about success for me anymore.

Now that I have time to be a mom again, I'm resetting all my attitudes thoughts and starting from scratch. And I am happy.