Thursday, January 28, 2016

Happy Divorcee


I'm using the term Happy Divorcee totally out of context to the movie, but in comparison to where life was last year, it makes total sense. About this time last year Grace was getting used to life outside the hospital. And she was mad about it. I hadn't realized returning to "normal" life would be so traumatic to a child who had spent majority of her young life living inside the hospital.

By living at CHLA for over 100 days I became Grace's closest friend. I helped her face each fear. I held her through each painful treatment. We played Barbies for hours when she was in isolation and not allowed to play with the other children. We colored together. Sang silly songs together. I essentially became a five-year old so that my daughter wouldn't be lonely. We lived this way often for weeks at a time.

When Grace was able to start living at home again I was eager to do grown-up things. Like talk to my husband. And pee in solitude. Grace became angrier and angrier and we couldn't figure it out. We imagined she'd be thrilled to be a regular kid again.

Finally we realized she saw me being a grown-up as if I had just ended a marriage with her. She was the scorned lover. So we backtracked and re-enacted the hospital life for a few weeks while we slowly weaned her off her mommy dependency. Not that she didn't still need me but we eventually returned to a more regular mommy-daughter relationship.

Fast forward one year.

Two nights ago Grace didn't want to eat her broccoli for dinner. I told her that I was thrilled and that I would only give her junk food and candy from then on out. No broccoli ever again. She looked at me suspiciously. I told her that if she ate healthy food then she'd grow big and strong and one day she'd be a teenager and even go to college. If she ate junk food then she would always stay my baby girl we would cuddle and I'd hold her tight forever. She ate her broccoli in a flash. She even licked the plate.

Grandma noticed the change too. Her two Grandmas and I used to hold very high places of honor in her life. Mostly because we were some of her main playmates when she was too sick to have friends. But she's back in school. She LOVES kindergarten. I think learning to read, learning to ride her bike, learning to have peers as playmates, has given her a huge sense of independence that our alpha-female is cherishing. Now the Grandmas and I are "regular." At first this was a painful realization.

I enjoyed the cuddles. I loved the secret smiles and her little hand always holding mine. I wasn't huge on the Barbie-marathons, but there was a lot of affection that blossomed in those moments. Now many of those moments are shared with friends at school. With her teacher. And in some ways I feel like they don't deserve them. They didn't clean Grace every time she vomited. They didn't push the call button every time she needed more pain meds through the night. They weren't there when she needed to play CandyLand eight times in a row.

Grace is now the happy divorcee and I am the left behind lover.

And I'm so thankful for that. I really am. Once we get the test results back next Monday (and I feel confident they show her to be cancer-free) my daughter will be normal again. Totally normal. She will be a regular kid without many of the emotional scars that cancer so often leaves. She will always need me, and her family, but not as much as before. She'll live her own life while we get to cheer from the sidelines.

It cost me everything I had to give for two years for this moment. As a mom it's so bittersweet. But I am so pleased that she's already beginning to leave the nest. She's learning to fly and I know she is capable of soaring.


Sunday, January 10, 2016

The Last Month of Chemo

I haven't been blogging much because I'm trying to write a book. A fiction about a shy librarian who is fighting battles in a time and world far, FAR, far away from cancer. It's been such a relief to have an escape for my brain on nights when I am tempted to remember too much. I just run and hide in my own little controlled world and that seems to work really well for me right now. I hope to publish and then make money from it. Win-win.

We're at the hospital today for clinic but Grace also has the stomach flu. She's not having much fun. 


Our friend, who has the same cancer as Grace (1 in 1 million kids have PH+ALL), isn't doing well. JoJo is here at CHLA as I speak getting inhumane amounts of chemotherapy. She's fighting for her life. We're delivering a gift to her from the BumbleBee Foundation. We were supposed to bring balloons for a girl named Natalia too, but sadly she died yesterday morning.

It would be possible to "move forward" if we were to cut all ties with our friends still in the cancer world but I'm not willing to lose some of the most true friends we've ever made. But every time one of them takes a punch, I feel my subconscious bruise. I bruise for the pain that child suffers, But I also know that as long as even a single kid fights cancer on this Earth, then cancer is still a reality that threatens my daughter.

For a while I was trying to plan how I could cure all childhood cancer. Really, I did. I didn't have any ideas how but that crazy feeling gave me crazy energy that resulted in many volunteer opportunities... but none that rid the world of cancer. Also it made me crazy. Really, really crazy.


The other day as I was walking in from the mailbox I burst into tears in our front yard. I suddenly remembered the photo of Grace hugging her brother and cousin goodbye that first week when she was diagnosed. I didn't know if that would be the last time they ever saw each other. I had that photo on my phone screen for two years and this was the first time I realized that's what that photo meant to me. So I stood there and cried for a while.

I've been trying really, really, really hard to let myself cry more. I found that I don't like to cry because I don't want to acknowledge the realities around me but also because I feel if I cry then I might never stop. Feeling sad and angry make me feel out of control.

When life is a mess then the only thing I have left to control is my emotions. But that's not the same as trusting God. I've been asking him to lead me into the unsafe place of feeling sadness and anger, to guide me through it, and to guide me back out again to a place where I can experience healing. And he has. And I feel more human as a result. And less crazy.

I'm glad I'm less crazy because life is about to get hard. Really awesome and also hard. Grace will (God willing) be done with her chemotherapy this month. Today we will confirm that with her doctor and then on January 21 she will end all cancer treatment exactly two years after she began. 

That is so exciting. Exciting for all obvious reasons. Hard because we looked forward to this day for two years during our worst moments and now, in our celebrating, we are reliving all those hopes and fears, dreams and pain. For me they are intertwined too deeply to untangle. All the feelings are there, stored up for one day.

Still the joy outweighs the pain, there's no questioning that. I am so excited for the 21. It will be the day I no longer give my daughter life-saving-poison with apple juice to wash it down with. Praise God.

 We'll keep you posted about the awesome celebrations and parties that you'll all be invited to soon.


Friday, December 25, 2015

Bumstead Christmas Letter 2015


Merry Christmas! We're so entirely thrilled to be celebrating Christmas at home as a family. This Christmas has felt like Christmas and we've loved every second of it.

Grace is in kindergarten and loves it. She runs to class every day, often without waiting for a kiss, which is a huge contrast from the beginning of the year when she had panic attacks every morning. She has friends, plays on the jungle gym, and reads small words. She has lost three teeth and can ride a bike with training wheels. Her hair is curly again and she looks forward to braiding it. 

Her brother is over his anxiety that mommy is leaving for long periods of time. He's only now experiencing the terrible twos (our therapist said the last two years were too traumatic and his survival mechanism was to be extra good. Now that he's safe again he's able to make up for lost time. Lucky us). But he also likes school, playing with cars and being "That-man"' aka "Batman."

Chad and I are being swept along in the busy river that is life. We're balancing hospital, kids, and work but having a great time of it. 

One of the highlights of our Christmas this year was volunteering with the BumbleBee Foundation. They blessed us with Christmas presents and gift cards, and soon after, we were able to team up with our family (Judi, Devan and Tina) and BBF to bless another pediatric cancer family.

The mom told us she didn't have any presents for her kids as she is recently single and they spent what they had on JoJo's recent birthday. JoJo has the exact same rare cancer as Gracie, and the girls met two months into treatment at CHLA, but she's not on the same clinical trial. We were heartbroken to hear that after two years of treatment JoJo still has 10% cancer still in her body. She will be getting a month of 24-hours/day chemo to fight it. That seems an unimaginable dose, and in a six year old, and then she will have a bone marrow transplant. 

I felt so broken and helpless hearing this, but knowing that we got to be a part of BumbleBee's mission to help pediatric cancer families renewed my hope and I felt like by helping I was punching cancer in the face. 

And it felt good.

We wish you all a merry Christmas full of love, comfort and joy.
Much love,
The Bumsteads



Friday, December 11, 2015

Heaven’s Healing Hotline Parody

 Just so you know, this is not the way God deals with our prayers...it's a parody. 

Agnes has angel wings and a call center headphone on and several paper files spread across her desk. Daniel has a cell phone. Phone rings, Agnes answers.

Agnes: Herpes, Ebola or flu, Jesus cares for you. This is Heaven’s Healing Hotline, Angel Agnes speaking, how can I help you?

Daniel: I’m calling to check on the status of my prayer request. I have cancer, you see, and…

Agnes: Name?

Daniel: Daniel Smith.

Agnes: Hold please. (hallelujah choir plays during hold)

Agnes: Patience is a virtue, thank you for holding.  Mr. Smith I’m having trouble locating your file. Was it a medical, mental, or dental healing you requested?

Daniel: Medical. I have cancer and…

Agnes: Ah! Here is your file Mr. Smith. Let’s verify your records. I see you’re listed as Mr. Daniel Smith, age 42, living in Normalville, Iowa.

Daniel: Yes.

Agnes: I see you drive a Volvo and are current on your registration.

Daniel: That’s correct.

Agnes: I see here you currently have stage IV thyroid cancer. Why didn’t you contact us earlier when it was Stage I?

Daniel: I did actually.

Agnes: Yes, yes, here it is. Stage I request… Ohh… I see the problem.

Daniel: Problem?

Agnes: Yes, this letter reads, “Dear God,”

Daniel: And that’s a problem?

Agnes: Well, you used a comma.

Daniel: Was that wrong?

Agnes: This is a formal request sir. I would have used a semi colon myself.

Daniel: A semi colon?

Agnes: Grammar counts when supplicating the Almighty. He’s the everlasting God, he wasn’t born in a barn you know (laughs).

Daniel: But I thought Jesus was born in a barn.

**silence**

Daniel: Hello?

Agnes: Well then, let’s check your references. I see you didn’t include anything from your pastor.

Daniel: Was that required?

Agnes: Recommended but not required. Alright, let’s review your proofs.

Daniel: Proofs?

Agnes: Yes, proof of faith. I see your certificate of baptism here. Let’s see if that was a sprinkling or a full immersion? It says…partial. That seems questionable. (Rustles through paperwork) And here it says you believe Jesus was delivered over to death for your sins and was raised to life for your justification.

Daniel: Yes.

Agnes: And Mr. Smith, I’m afraid your other proofs haven’t come through. That’s likely the cause for the delay. Did you use include Form 7613ez when you submitted them?

Daniel: Wait, I needed other proofs? I don’t have other proofs.

Agnes: You don’t? Tsk tsk. You’ll want to include more than just your faith in Jesus.

Daniel: I thought that faith in Jesus was how I obtained salvation.

Agnes: Salvation, yes. But a miraculous healing is a bigger task for God. Much bigger than salvation. We require two or more proofs of your faith.

Daniel: Such as?

Agnes: Have you changed water into wine or other beverage, either alcoholic or nonalcoholic?

Daniel: No, I haven’t, I…

Agnes: Have you recently multiplied any food items, not limited to bread or fish?

Daniel: No, I…

Agnes: Moved any mountains, mountain peaks, mountain ranges, mountain sides, summits, bluffs, dunes, hills, and/or, foothills?

Daniel: What? No! I…

Agnes: Mr. Smith, how do you intend God to be able to heal you if you don’t have enough proof of your faith?

Daniel: I didn’t realize I needed faith for God to be able to heal, I…

Agnes: Look, Mr. Smith. (sighs) I’m willing to add you to the bottom of the B list. If God has any power left over after healing all the Christians with real faith, then he’ll start to answer the B list prayers according to the order your request was received.

Daniel: Oh. I see.

Agnes: But don’t be too sad Mr. Smith. Should God deny your request, your consolation prize is that you’ll be joining us in heaven here real soon.

Daniel: Heaven?

Agnes: I realize it isn’t much of a consolation.

Daniel: It’s not that, it’s….

Agnes: Oh! I forgot to mention that you can also fill out our ‘Permanent Exclusion from Death Request.’ That’s form 1894d.

Daniel: Then I would never die?

Agnes: Well, in all of creation God has only approved it twice, once for Enoch and once for Elijah, but seeing how your file is so thin, I think just adding extra papers could help your case. That’s the best I can do for you today.

Daniel: Oh. I just feel so…

Agnes: Thank you for calling today Mr. Smith and remember, ‘You don’t have Faith until you have our 16oz Inspiration Coffee Cup, now available online and at selected retailers.' Goodbye.

(Ends call, answers next call) 

Agnes:  Herpes, Ebola or flu, Jesus cares for you…

Sadness and Joy


We saw Disney's "Inside Out" on our Disney Cruise trip. That movie changed my life.  I have been planning a photo album for Grace since she was diagnosed. It would chronicle her journey and help her understand how strong she was. I had planned to gloss over the hardest moments. I wanted to focus on the victories. I didn't want her to feel sad each time she read it, so it would show the most joyful moments.

After watching "Iniside Out" I realized the  important role sadness brings to the movie.  (spoiler alert) Sadness helps connect people. When they are sad and lonely, it inspires empathy and the deepest love from friends and family. Thankfully the character Joy realizes in time that Riley can't be complete without embracing Sadness. 

After that movie I mentally redesigned Grace's scrapbook. It will have her whole story, even the darkest moments. Then she will truly know how strong she is. She will know how loved she was, even at her lowest moments. Then her joy will be complete knowing that she was not alone in times of sadness. 

I wish all of Christianity saw that movie. We're so into "joy" that we are frightened by "sadness."  We don't understand sadness' value, we don't embrace her. We are ashamed of her. We gloss over her important and beautiful role in the Bible. 

For example, today I read in one of Beth Moore's books, about the suffering of Paul. How did I not know his last letter was 2 Timothy? That it was written not under house arrest like 1 Timothy but in the worst of the Roman prisons? I didn't know Nero was emperor then. I learned that the crazed despot likely burned down a third of Rome (so he could rebuild it in his honor) and then blamed the fires on Christians. He had Christians dipped in tar and burned alive. He threw families to the lions in arenas. He made Christianity illegal and the public enemy. 

And in his jail he held the most famous (and one of the few remaining alive) apostles. Paul had a public trial, as he was a Roman citizen, but non friends came to speak in his defense for fear of persecution.  He was likely systematically shamed by his guards and repeatedly asked Timothy to not feel ashamed of him too. He was over sixty years old. It was likely that he was hungry and weak and cold. And at the end of it...he was killed. I had never realized the intense sadness Paul experienced before his death.  

Today I loved Paul for his suffering. He had it all, lost it all, and meet death face-to-face with Jesus by his side. What else could have inspired him to write, "...the Lord stood at my side and gave me strength...the Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom."

I now have a role model when life is devastatingly hard. I can read Paul's writings and feel safe when life has more sorrow than joy.  I can see that humans can be reduced to ash and Jesus is with them through the it all, giving them strength to endure until he brings each of us home to his heavenly kingdom. Just like he did for Paul. 

I love joy. But sadness has become a deeper and more meaningful treasure for me. 

Monday, November 16, 2015

Tattoo


I finally got the tattoo I've been wanting for two years now. 

This is the hymn I sang every morning when we were inpatient at Children's Hospital Los Angeles. I sang it in the hot shower- and if I had a shower, that meant it was a good day.

Great is Thy faithfulness,” O God my Father,There is no shadow of turning with Thee;Thou changest not, Thy compassions, they fail notAs Thou hast been Thou forever wilt be.

“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 Thy faithfulness,” Lord, unto me!

Summer and winter, and springtime and harvest,Sun, moon and stars in their courses above,Join with all nature in manifold witnessTo Thy great faithfulness, mercy and love.

Pardon for sin and a peace that endureth,Thine own dear presence to cheer and to guide;Strength for today and bright hope for tomorrow,Blessings all mine, with ten thousand beside!

It reminded me that every morning God would provide new mercies that would carry us through that day. I soon learned that the best way to deal with trauma is to focus on only that day, not looking behind or forward, and that God would always provide what we needed- exactly enough for that day- much like He gave manna in the wilderness.

The biggest thing I have learned from Gracie's cancer journey is that it is not my own goodness or strength or faithfulness that sustains my relationship with God, it is because of his great faithfulness that we are able to follow Him. How many times he found me as I wandered in despair and pain. How many times he comforted me when my heart screamed accusations at him. When I found myself void of all hope, he was there. He was not afraid to ascend into the hell we were living in to be with us.
I put this on my left arm in honor of the Phylacteries that orthodox Jews wear. They wear God's promises over their weakest part of their body (left arm), which is also a direct line to the heart. For the rest of my life, no matter what happens, I will have a visual reminder that God will never leave us or forsake us, because of his great love for us, I can sing, "Great is thy faithfulness, Lord unto me."


Tuesday, October 27, 2015

Season of Sadness




I'm still emotional today. I've been sharing the relapse scare story with more people than I intended to. I guess I'm hoping that someone who hears it will be able to make me feel better. They can't but apparently that hasn't stopped me from trying. I think I could be in the beginning phases of depression. Or just overtired. Or both.

I've been wrestling with several issues. When Bailey died, death took on a realness that I never had to face before. The gap of where she should be is so obvious. 

Also, after last week's scare I can't seem to get over the fear of "what if Grace relapsed," even though there's nothing currently to make me afraid. I did such a good job thinking cancer was a thing of the past. I was "moving on" and "happy" with how well she was doing. I was also ignoring stories from other cancer families and kept myself at an emotional distance. Pretending it's not happening/happened is not the same as "moving on" no matter how much I try. 

Just the feeling, the reality of what cancer means, even though the scare only lasted an hour, has been a bitter reminder that I can't escape.

I've really been looking forward to Fall but now that it's here I've found it's brought a lot of painful memories. This time last year was when Grace had undiagnosed GI neuropathy. She was so sick that she refused a cupcake at Luke's party and laid on the couch vomiting instead. I remembered that when we were eating cake at his party this year. She had to be carried house to house to trick-or-treat because of the pain. This year's costume reminded me of that. Soon she couldn't eat, then she couldn't drink. We had dozens of ER visits, many of them ending with as many hospitalizations as times that we were sent home without answers. It was one of the scariest, most frustrating, and painful parts of Grace's journey.



I guess I should just be "happy" that now she can do fun things now, like eating birthday cake and trick or treating, but it hasn't blotted out the painful memories of last year. I am happy about trick or treating this year. Little victories like that are so precious to me now. But the memories still hold very real pain. Last year there was little time to feel, only time to survive. I've been reliving last year emotionally this year, but I feel if I were to skip that process, then the feelings would haunt me forever. 

And finally, I'm trying to figure out if we need to move. I don't know if our home is safe or not or if something in the environment here caused Grace to get cancer. I worry for Luke's safety as much as I worry for Grace. Not only am I worried about if we need to move, but also where would it be safe to move to? And how would I know?

All of this, on top of the daily pressures of life, have been pinging around in my brain like a cannonball. There's little logic, lots of emotions lately. 

I just don't know how to turn over my fears so that I can be free of them. I give them to God and they return. Maybe it's just that as a type-A personality I expect results immediately and that I have to repeat my struggles daily, even hourly, is frustrating. I know I can trust God. I know I need to allow him to guide me. I know that he sees my heart and that I am trying my best to trust. Still I struggle. 

I've also decided I need to give myself a period of grieving. I'm allowing a season of sadness. I need to be easy on myself and allow myself to feel last year's trauma. I'm trying not to put limits on my grief but it's hard. Our society doesn't sit well with pain. It's hard to explain to people why I'm hurting and harder still when they need justify why I feel this way. Like me, they want quick results. 

So I will struggle on, slowly, and ungracefully, but with peace that this is my path for now. I will dwell in the season of sadness until God has done in me what he needs to, and I will not rush.  


Psalms 107

Give thanks to the Lord, for he is good;
    his love endures forever.
Let the redeemed of the Lord tell their story—
    those he redeemed from the hand of the foe,
those he gathered from the lands,
    from east and west, from north and south.[a]
Some wandered in desert wastelands,
    finding no way to a city where they could settle.
They were hungry and thirsty,
    and their lives ebbed away.
Then they cried out to the Lord in their trouble,
    and he delivered them from their distress.
He led them by a straight way
    to a city where they could settle.
Let them give thanks to the Lord for his unfailing love
    and his wonderful deeds for mankind,
for he satisfies the thirsty
    and fills the hungry with good things.