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, 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.

Thursday, January 29, 2015

Great is thy faithfulness

Last night I had nightmares all night long of being back in the hospital.

Grace had a scratch on her shoulder that had purple veins starting to creep near it. I was very worried it was an infection. I called the 4th floor Oncologist and they had us watch it for the night. By the morning it looked better but I called the Infusion "Fast Track" (like an Oncology Urgent Care at CHLA) and sent them the photos. While we waited for their response I got Grace dressed and emotionally prepped to be poked and to spend the day/potentially night at the hospital instead of going to school.

The threat of infection is still very real for Gracie, even though she is now in maintenance. We know one other family that their daughter caught an infection in maintenance and went into septic shock and spent some time in the PICU fighting for her life. The thought of it had me very scared to say the least.

I felt God so closely during most of our journey, but those last two months when we were in the ER six times and spent weeks with Grace in terrible pain and no answers- remembering that time still wracks me with emotional pain. Why did God allow it? Why didn't he provide answers sooner and spare Grace the misery? Why didn't he take my fears away? How can he love us if he turned his face from us?

This morning I was praying for God to take that pain away and I felt him whisper, "it's ok to be in pain. It will take time to heal, and that is ok." Essentially he was telling me to allow myself to be broken, to not skip the process of healing, and that I am allowed to be close to him even as I'm hurting and grieving and even angry at him.

I've spent all morning trying to wonder how we managed to get through that time and trying to understand if God did abandon us for that small part of our journey.

Then I remembered. Each morning in the hospital I sang,

"Great is thy faithfulness
 Great is thy faithfulness
 Morning by morning new mercies I see
 All I have needed thy hand hath provided
 Great is they faithfulness
 Lord unto me."

Day by day God provided what we needed. It was like manna for the Israelites. There was enough mana for each day. It didn't secure the week, but for that day it provided. If you held onto that day's worth of manna, and didn't get it new the next morning, the old mana spoiled. Every day you had to get "new mercies."

Looking back, I was only seeing and feeling the pain of the entire experience. Now I am reminded that day by day God held us and gave us enough for that day. I now see his constant and sufficient grace for each day. It didn't take the whole away. But he did not leave us.

I am still healing, but for today, his mercies will bring us through.

Monday, January 26, 2015


I've just wanted to say again how much we appreciate all the love and support that you have all given us, and continue to give. I appreciate not only that you leave encouraging comments all over our Facebook page, but also that you continue to leave them even though I don't often reply. I promise you, I read them and am encouraged by them. We have appreciated every call, card, donation, and thoughtfulness that you all have so generously shared with us.

I had supposed that once Grace had hit maintenance that cancer would be a memory we could put behind us and climb right back into our old skin. I was wrong.

Cancer is part of our world now and will always be. Many times the side effects of chemo can show up later in life and we don't know if Grace will have any long term effects. Even now we're still praying for Grace's GI Nueropathy to heal and that it won't be permanent. We also pray that Grace's cancer will never relapse. Yet the threat of it will always be real for us. We will be intentional not to let that shadow cloud over our lives.

But even if Grace never faces cancer again, we also have several little friends who continue to battle. And I don't doubt we'll make more cancer friends after that. I don't think we'll ever leave the cancer world. We just don't know yet how God intends us to be involved.

Another thing that has surprised me is how much I'd feel. I thought since the worst was over that I would naturally be happier. I am happier. But I am also often surprised by the intensity of my emotions and the timing of when when they appear. During church last week, and I don't know what triggered it, but I had a complete memory of being in the hospital. I saw the long white corridors, the locked rooms where BMT kids live, the nurse station, the smell of antiseptics. And it instantly brought up all the emotions I should have felt that day, but was unable to deal with.

I now know that it's actually a normal response. My therapist taught me that I should expect these sporadic emotions to be somewhat normal this year. Last year was an exercise is staying calm, brave, and numb. This year I will relive last year, especially on anniversary dates, but unlike last year, I now have the time and ability to feel. That is both a relief and a terrifying thought at the same time.

Grace has also been dealing with her experience. She has nightmares about monsters with needles and is asking more questions about what happened.

We've also found out that we can never go back to who we were before. We've been stretched and have grown in so many ways that we don't want to go back. Yet we keep trying. We booked up every available second to catch up with friends, family, errands...only for Grace to be nuetropenic, and we then canceled everything. We realized that this year we will have one foot in "normal" and one foot in "cancer," and that is still a lot to deal with. We also realized that our lives were too busy before and that we want more margin in our lives.

This year we will cocoon. It's like a family huddle. We will continue to focus on each other and keep close together to keep out dangers. In a lot of ways it'll seem like we should be ready to "move on," but inside the cocoon there's a lot of growing and healing happening that might not be noticeable from the outside. If we continue to seem absentminded, unsociable, or even stressed, please know that we're still cocooning. And it's a process that needs to happen so that we can heal.

And through the process of cocooning we're also doing "normalish" things. Overdue things. Like finally potty training my three year old son. (Just as a side note, pee on the wall can strip the paint. Just found that out a minute ago.) Grace is relearning how to play with her brother and with kids her age again. We're learning to ignore bruises again as she is actively dancing and jumping and living again. Not that they don't stop my heart every time I see one, because they do. But we're learning. And healing. And happy.