Monday, November 16, 2015


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.

Friday, October 23, 2015

Relapse scare

What a week it's been.

Monday: Relapse miscommunication
On Monday I took Grace for her once a month doctor's appointment. After Grace had her blood work done we waited for 1.5 hours. That's pretty long, even on a bad day. Finally I went out into the hallway to ask the nurse practitioner if we could go get lunch and then return.

"Sure," she said, "because Grace has an ANC of 4K and we want to give you answers. It could be a while still." And she left. And my heart dropped.

The only time an ANC should shoot up that quickly is:
1. chemo has been reduced (Grace's had not recently)
2. The body is actively fighting an infection (Grace was not)
3. Leukemia cells have returned (hence my heart dropping)

An hour of trying to stay calm and praying like crazy the nurse practitioner returned and let me know Grace was totally fine. It was a reaction to having a reduced chemo eight weeks ago. Her platelets were fine and her red blood counts were fine. When I started to dry my eyes she realized that she had scared me. She apologized very sincerely.

That hour was the most frightening experience I've had this year. It took several more hours to finish the day and overall we were out that day (with driving time) ten hours.

On Thursday we picked up Grace from school in time to rush her to her local pediatrician appointment so she could get her flu shot. It was then we found out she has a double-ear infection. Thankfully she was able to get at-home antibiotics.

I went to bed really worried that she'd get a fever and we'd have to rush her to CHLA in the night. I woke up every few hours worrying and checking her forehead. Then I had the worst nightmare of my life.

In the dream Grace had a high fever. She was on our couch, crying and screaming because her head hurt so bad. In the dream I was really tired and groggy and was trying to wake up so I could help her. I stumbled to the fridge to get her an icepack for her head and when I gave it to her I realized all her hair was falling out again because the cancer was back.

Needless to say, after I woke up from that nightmare it took me a long time to fall back asleep again.

I think part of the hardship of being a cancer mamma is the stress of knowing that you are your child's first responder. If there is any health issue, it's mom that has to notice the problem (because kids can't often verbalize what's wrong) and then discern if it's a serious issue. Your child's life can literally depend on your reaction.

Granted, there are big problems that are obvious, but by then it might be too late- literally. Bruising, lack of appetite, not pooping or not peeing, too much pooping or too much peeing, nausea- these all can be life threatening situations with cancer kids and they can be very hard to catch. You have to be checking your child's health in the back of your mind at all times, and often at the front of your mind too.

Plus it's hard in maintenance because you're kid looks normal but you still have to think like a cancer mom. You have to be able to go from 0 to 100 at any second- you might have to drop everything to because they have a 101 fever and there's no hesitating- you go straight to the ER. But when life is feeling "normal" it can be hard to shift into that response mode quickly.

I think it's hard too because there's no time to digest. It's always go. I don't think I've dealt with Monday's scare until I started writing this, which is why I decided to blog tonight- to make myself take the time to deal with it. And even still I'm not. I feel like I need to cry to really deal with it, but I don't have it in me to cry tonight.

Anyhow, I mostly just needed to get that out...

Wednesday, October 7, 2015

Fish and Bread

Grace's classmates taught me something that blessed me today. Sometimes when I see the world, and I see all the problems, I fell so small. So powerless. I feel like even if I did everything I could, how can one person make a difference when the world is full of huge problems?

The kids in Grace's school brought in their loose change to buy Bibles for Children's Hospital Los Angeles. Many of those kids brought in their own allowances and savings, not just the few nickels from the behind the couch cushions. Together they raised $325.00.

Then yesterday I posted what the kids had done on Grace's Facebook page and many adults were so touched that they matched and exceeded the donation! In total we now have a total of $775.00 to buy children's Bibles. And these are fantastic Bibles! They're beautifully illustrated and tell of God's love in easy to understand stories.

These will go directly into the hands of hurting kids and families at the hospital. I told Grace's school today that often when people get very sick they sometimes pray and ask God, "do you know I'm in trouble? Do you care about me?" And then when their prayer gets answered by receiving a Bible- that means that these kids (and grownups) were part of how God answered that prayer.

I also shared with the kids something I felt God remind me of this morning. When Jesus fed the 5,000 people, he used the lunch of a boy. A kid. And the kid shared the little fish and bread that he had and he trusted God to use it. He had the attitude, "I can't do much, but what I can do, I will do."

Jesus took the boy's small offering and used to to feed thousands of people.

That's what happened when the kids shared their allowances today. A small baggie of dimes and pennies doesn't seem enough to make a difference. But when they obeyed with their small offering, and worked together, God blessed it and multiplied it! And he used the kids's big hearts to inspire adults and even more good was done!

I love seeing how God works and that he uses kids to make an impact. The kids also collected food and toiletries for the Ronald McDonald house in Los Angeles. They had so much that the back of my van is sagging!

What an inspiration. Our little part matters. That is such a relief and encouragement to me today.

Monday, September 28, 2015

Admitting to Brokenness

Thank goodness for good friends who stem the tide of insanity in our lives. Today there were several ladies in my life who lent themselves to helping me with that.

I've been very anxious lately.

Maybe it's because it's safe enough to deal with the emotions I had to repress last year. I think the deaths of several little friends has shown me how real the threat of cancer is and that in itself is terrifying on hard days. I think a lot of my anxiety lately has to do with feeling threatened by the Santa Susana Field Lab meltdown. The potential of that undisclosed danger has really unnerved me. Also I'm much too busy lately, much too tired, behind on work deadlines, and after spending six days with Grace in the hospital we came home and I immediately got sick with a nasty flu while Chad was out of town for business.

When I read all that it's no wonder I'm a mess. But still, I feel guilty for breaking down. I had really imagined maintenance would be so much easier. I really though that I would be able to balance normal life with the occasional cancer days without a sweat. Because this year doesn't even compare to how difficult last year was. Still it's been significantly harder than pre-cancer life. And it's been almost impossible for me to admit that.

This year has been without buffers. Everything is working but it feels like it's one mistake away from catastrophe. And that pressure to keep up on all fronts has me exhausted and anxious. I've done my best to trust God and let him be in control. Some days that comes easily, days when I hear his voice clearly and feel his peace closely. Then there are days when my faith seems as worn thin as my spirit.

My friend Julia has seen this uber-anxiety in me first hand lately. Today she made me do what I hate the most. She made me admit that I can't do it all. I also talked to Letty from the Michael Hoefflin Foundation. Both ladies listened and encouraged me. They also helped me to understand that help isn't just for the helpless. It's also for people who are capable but who have more to deal with than they can handle.

I realize now that asking for help doesn't make me weak. Knowing that I can't doesn't make me less capable. Admitting that I am insufficient doesn't mean that cancer won. Because I think that's what hurts the most. Admitting I need help is when Grace's cancer feels the most real to me.

So I am working towards overcoming that feeling. I'm going to embrace my weakness more, instead of fighting against it alone. I'll give myself mercy to be broken instead. I will continue to do my best to trust God and to listen for his voice to guide our family. I will leave more buffer in my life to allow all that to happen.

And I will continue to be thankful for the friends in my life who encourage me when I am weak.

Thursday, September 17, 2015

Art Therapy

Yesterday we got a visit from Amanda, our favorite art therapist. I love at CHLA that they recognize that different children will express themselves differently. Grace wasn't big on movement/dance therapy or even music therapy but she responds to art therapy.

The purpose of art therapy is to not only give kids a chance to be artistic, but it gives the therapist an opportunity to talk about difficult subjects. Yesterday Grace made a flower out of clay and paper (we hung it on her hospital wall).  Amanda didn't want to dredge up painful memories for Grace unless Grace wanted to go there, so instead they talked about how strong the flower's stem looked and that it could weather storms. She asked Grace how she felt about being strong when life is hard.

I love that Amanda gets to do that with Grace. After her session Amanda and I got to talking about how life is now that we're home more. I told her how difficult it was for us at first. There aren't a ton of resources to help families cope with the transition. There are therapy groups available through cancer foundations but unfortunately they were all over an hour away, and on school nights. I told her that we actually had to mimic hospital life at home for several weeks until Grace could handle being back at home.

She had some great ideas on how CHLA art therapists might be able to help meet that gap. She had ideas on care packages that could teach parents how to do some simple therapy with kids. But it's hard. It's hard for parents to even put words to their feelings. But I know that kids (even young kids) have a build up of emotions after being in the hospital and struggle to cope with that. Grace struggled.  

Overall I was just glad to see Amanda again. I thought I had broke her last year, but she's obviously tougher on the inside than just her smiles on the outside. 

Grace was having severe constipation last year brought on by her chemo that damaged her GI tract.  I had promised Grace that if she took her medicine then she wouldn't need the hated GI tube, because at the time we didn't know what the root cause was. She was so sick. She could hardly eat or drink and lost weight rapidly and the doctors didn't have answers for nearly two months.

After maxing out every type of laxative at home Grace would be brought inpatient for a GI tube that they used to give her medicine usually used for colonoscopies, to make her poop her brains out. A GI tube, by the way, is a tube they stick up your nose, thread through the sinus cavities, and then leave hanging down your throat into your stomach. Apparently having it inserted  feels as bad as it sounds. And I had to pin Grace down while the nurses inserted it, even though I had promised no more tubes if she took her medicine. And she had. And I had broken my promise.

Amanda was there that day that I had to hold Grace down. I was so shaken and upset that after Grace’s therapy session that Amanda invited me to sit with her and talk a bit. She was so patient as I vented all my hurt and frustrations. I remeber saying, “what does it matter how I feel? It doesn’t change anything we’re dealing with.” Amanda took it gracefully but with tears in her eyes.

 That was the last night we saw her until yesterday. I really thought I had been too much for her to handle and that she had quit. I’m so thankful that she didn’t because she has such a big heart for the kids here. 

Apparently Amanda is a strong flower too. 

Monday, September 14, 2015

Hospital Update September 2015

We're in the hospital again. This will be the longest stay we've had this year. On Saturday Grace was at her Grandma Noni's house for a sleepover while Chad and I went to my best friend's wedding. I got a call in the afternoon that Grace had a 99.6 degree fever, refused lunch, refused a popsicle and had fallen asleep on the couch with her brother and cousin running around her. That concerned me right away.

By the time we met my mom Grace had a 102.6 fever. CHLA advised us not to risk the drive out but to go to the nearest emergency room. She wouldn't walk, talk, or drink. She kept falling asleep wherever she could. The miracle was finding a CHLA nurse we knew working there that day who was able to successfully access her port. After she was given Tylenol and fluids I left her to Chad's good care while he waited 5 hours for the ambulance transport to CHLA and I ran out to get in a little time at the wedding.

By the time I made it back to CHLA Grace was herself again, although a sick version. But she sat up to eat the slice of wedding cake I smuggled in for her. Her cheeks weren't flushed and she was talking. Chad went home and Grace and I have been here since.

We've met two newly diagnosed families this trip. Thankfully we're able to be more social since Grace isn't contagious and she's allowed to spend time in the playroom and reading room. Overall our stay here has been friendly, and even though we'd rather be home, we're thankful for all the hugs and hellos we've had from our nurse friends.

Every time we are inpatient it hits me how many children have cancer.

All of the children we meet become part of my heart. There are even more kids in the Facebook groups and in foundations we belong to. There are so many that I can't take them all in, but now and then one of those children hit a chord in my heart. I don't even know what the endearing common denominator is, but they share the same space of importance to me with the cancer children we know personally.

One of those is Liam. Maybe it's because he always wears the same knit "Minion" hat that my own son has. I've been following Liam against my own advice- sometimes being so connected to too many suffering children bleeds my heart dry- but he's somehow made a spot where he belongs in my life. Liam is dying tonight. He has that same terrible neuroblastoma cancer that took Bailey a few months ago. He's fought so hard and his parents cling to Jesus with faith that amazes me.

It hurts fresh every time I hear or read the words "we're in PICU and not expected to survive the night." Most adults I know, often including myself, shy away from facing our mortality. We fill our lives so full that there isn't time to wonder about the next day, let alone the end of our days. Sometimes it's hard to think of how many children, and parents, have to face that reality, and the children in particular seem to do it with such ease and grace.

Children do not doubt that heaven is real and that God loves them. I think it's a natural faith that we're each born with that erodes away as we grow older. It's not a wonder that Jesus said we have to try to unlearn being adults and become children again if we're to enter the kingdom of heaven.

I'm praying today for Liam to have a peaceful journey, should he go to heaven tonight.