Magic Moments

Today had two magic moments in it. Magic moments are the unexpected events that can’t be planned or even hoped for, they are moments of true and meaningful connection with others. They are spontaneous as a rule. Magic moments are treasures, and even if they seem unimportant to anyone else, they are the small memories that burn bright in your heart all your life and never lose their warmth.

Today I saw Luke when he and Noni came to visit Grace and me at the hospital as a surprise for my birthday. It was so much fun to play with him. But it was later over the phone that my magic moment with him happened. I asked him if he ate dinner and he said he had soup. I asked him if it was yummy and he said, “it not yummy. It hot.” He’s only just learning descriptions and to hear him come up with that on his own was so precious to me. I have a feeling I’ll smile for the rest of my life whenever I eat soup, thinking about my Luke sharing details of his life with me.

I had another magic moment today, this one with Grace. But in able to share the magic, I have to contrast today with yesterday. Yesterday was our third day being inpatient at Children's Hospital Los Angeles. I was so distraught. I was so worried about Grace, the most I’ve been in months. She was so clearly miserable, so tired, so sad. She was on every laxative known to man trying to dissolve a blockage that was causing her considerable pain and caused vomiting after every meal. I felt so helpless. She wasn’t talking at all, only using thumbs up or thumbs down to tell us how she felt. She took a four hour nap and when we took her down to the playground she only watched Luke from a chair while wrapped in a blanket and cried. It was a hard day for all of us.

But today Grace started talking again. By the afternoon she had eaten a little chicken broth and had some lemonade and it cheered her up so much that she was even smiling and sitting up again. I think her tummy was finally starting to feel better from the laxatives working. By dinner time she was allowed to eat a banana and crackers. She was so happy, she told me today was the best day ever. Later I took her to the bathroom knowing we’d be there for some time. So we started singing silly songs as we waited.

“Willa-bee-walla-bee-woo, an elephant sat on you. Willa-bee-walla-bee-wee, an elephant sat on me,” the songs goes. I’d sing about the elephant sitting on the “pospital" and she’d finish the song with him sitting on the hospital. Our elephant sat on the bed, in the sink, on the nurse, on the doctor, getting shots, driving home, snuggling in bed and then we ran out of rhymes. She was laughing the whole time and it was so wonderful to see her enjoying life again. Her smile was so bright and so genuine and I was so glad to be part of it. 

I would have never imagined moments on the phone and on the potty could become treasured memories. But it does seem that often it’s the little nothings that come to be the most important and most lasting in life. The big moments are special too, but they don’t always seem to shape us the way the small but frequent memories do. And small moments have a special way of squeezing down into the smallest crevices of our heart, like a seed where they slowly stretch our hearts bigger and deeper as they take root and grow.

Those special connections are full of magic, but only if you can catch them. Having two magic moments in one day with my children was the best birthday present I could ask for.

Hospital Stay, Day 13

(Grace naps a lot from the morphine and Benadryl. Best pain management is sleep I think.)

I don't know why. Last year I decided that I would memorize several old hymns. The day dream was that if I were ever captured by the Taliban then I would sing the hymns and they would be won over and all of the wars of the world would end. Strange, I know. No one was supposed to know that, but there you go.

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." The reverb in the elevator is excellent, by the way, so I really enjoy singing there when it's empty.

Last night, or rather at two in the morning today, Grace had to go potty. I have to carry her since she is too weak to go by herself, plus there are eight tubes and a tower connected to her right now that get very tangled. 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. The sores in her mouth ooze blood and so they will work on keeping her platelets above 20K. This is the second time in three days she's needed a platelet transfusion for the same reason.

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.

(I miss my boys)

Wild Ride

Today has gone surprisingly well. Grace hates having her picc line dressing changed, but she did a great job even though she was very unhappy about it. Her numbers are still low, but higher than last week which made the doctor feel optimistic that the chemo is probably working. I was feeling really up. Grace has been talking today, smiling and making jokes. So far no nausea from the chemo, but last week it didn't hit until midnight, so we'll see how today ends.

Today I joined a Facebook support group for ALL. Within ten minutes I was connected to two other moms whose children also had Ph(+). One of them commented that it's been a year for them since diagnosis and a "wild ride." And in that small statement my courage collapsed.

I feel like I live in two dimensions. The real and the imagined real. Sometimes, like today, I feel unfamiliar even in my own house. It feels as if I'm shocked out of a dream and I don't know where I am for a moment. In my imagined real, my plans and schedules and disinfectant wipes are enough to cure Grace. Today I was shocked out of it by the other mom's statement and I realized my plans have no power. My schedules, while helpful, can't cure, and my wipes don't even impress Grace's doctor, compared to her medicines. And suddenly I'm back in that unfamiliar place called Leukemia. And it's real. Suddenly very real.

Sometimes I feel I don't even know how to pray for Grace. Obviously I want God to heal her completely and that this will be one day an amazing story. But I also know that not all of God's stories end that way. I want to pray for God's will to be done, but I'm so afraid to that I worry that I'm avoiding the topic too often.

Sometimes I'm so filled with peace it seems to be my only reality. When I'm afraid like today, it seems like the peace was only a hopeful dream and my fear is the only true reality. So then I turn back to God's word, to find his reality. It calms me again and helps me to breathe. This Psalm is just right for tonight.

Psalm 116

1 I love the Lord because he hears my voice
    and my prayer for mercy.
2 Because he bends down to listen,
    I will pray as long as I have breath!
3 Death wrapped its ropes around me;
    the terrors of the grave[a] overtook me.
    I saw only trouble and sorrow.
4 Then I called on the name of the Lord:
    “Please, Lord, save me!”
5 How kind the Lord is! How good he is!
    So merciful, this God of ours!
6 The Lord protects those of childlike faith;
    I was facing death, and he saved me.
7 Let my soul be at rest again,
    for the Lord has been good to me.
8 He has saved me from death,
    my eyes from tears,
    my feet from stumbling.
9 And so I walk in the Lord’s presence
    as I live here on earth!
10 I believed in you, so I said,
    “I am deeply troubled, Lord.”
11 In my anxiety I cried out to you,
    “These people are all liars!”
12 What can I offer the Lord
    for all he has done for me?
13 I will lift up the cup of salvation
    and praise the Lord’s name for saving me.
14 I will keep my promises to the Lord
    in the presence of all his people.

15 The Lord cares deeply
    when his loved ones die.
16 O Lord, I am your servant;
    yes, I am your servant, born into your household;
    you have freed me from my chains.
17 I will offer you a sacrifice of thanksgiving
    and call on the name of the Lord.
18 I will fulfill my vows to the Lord
    in the presence of all his people—
19 in the house of the Lord
    in the heart of Jerusalem.

Praise the Lord!

The Haircut

Last night Chad pulled up the Hip Hats website that CHLA had recommended to us. To be honest I had forgotten about it. I had assumed there was no way on Earth that Grace would voluntarily cut her hair before it fell out. But I had noticed the hair brush full of hair for two days. We really liked the hair halo idea as it uses her own hair.

At her age, I'm not sure how she'd field the questions from other kids in passing about her bald head. I think a wig for public outings might make her more comfortable. This morning after showing her another handful of loose hair we showed her the website and asked her what she thought. I was floored when she said she'd do it.

Later today she told me she was pulling more of her hair out. She told me she thought that if she lost all of her hair she'd feel better. Again she surprised me with how well she took the news that her hair loss means the chemo is working, not that it will necessarily make her feel better.

She voluntarily took Ella along to Bambino's Kid Hair Saloon. She was amazing. I had stored up so many anxieties for this moment and she took it like it was the most natural thing in the world. No wonder, we had lots of people praying for this. And after it was gone, my brave, beautiful was still smiling. I knew she'd be beautiful without her hair. And she is.

Angry at God

(Grace painted this for me yesterday.)

Last night was a prayer and worship service at our church, my first outing since Grace's diagnosis. I sat the entire time with two ladies from my church on each side, each with a hand on my back. They didn't say much and that is exactly what I needed.

I asked God to clear my head and all the confusion. More than anything I just wanted a word from him, to hear his voice, to feel his comfort. I was completely mixed on being there. Half of me wanted to run away and half of me refused to leave until I felt him. Luckily the refusing me won.

As I was praying, and I have no idea what I was praying, God showed me that I was carrying a burden I wasn't meant to. (Teri Reisser, my therapist, you'll be happy if/when you read this). I am by nature a people pleaser, which is why I was in therapy before Grace got sick. God showed me that I wanted good to come out of Grace being sick, which in of itself is not a bad thing. I've desired that people would be changed when they see how God is working in our lives, but the problem was that I had taken the emotional responsibility of that happening.

Also God showed me that I was not only trying to "save the world" but that I was trying to compensate for him, as if he made a mistake by letting this happen. I was trying to cover his mistake with my actions and feelings, pretending that this was really all ok with me because it was for his glory. He let me know last night that it was ok to be angry at him. And it all came out.

I am so angry at God. That he would let this happen to us, to Grace. That he would allow his people to suffer. And as we suffer I feel the world suffer. I feel connected to the sick and broken in a way I've never before, it's no longer "them" and "me."And I am angry at God for all of it. And I feel so connected to Jesus because he has allowed me to be real with him. He's made it safe for me to be angry at him and when my pretending went away, the real me was filled with his peace and presence in the way I've been longing for. And I'm still broken. And I'm still angry. And I feel peace for that.

If God brings good out of this, it will be his miracle, not mine. He showed me that my job for now is to take care of my family and keep my eyes on Him only. If others are helped or encouraged or even find salvation, it will because he did it. Not me. Only other people pleasers will be able to understand the relief that brought me and the huge weight  that has come off my shoulders.

And I can be myself around Jesus, even my worst self. What a relief. All last night during worship my repetitive hymn was, "Thank you that I can be angry at you and still be loved by you."

Grace's clinical trial run down

Tomorrow we go back to the hospital for Grace to get her chemo and also to start the new clinical trial for her Ph(+) inhibitor, Dasatinib. For those of you wondering, we feel strongly that this new medicine will really help Grace, and here's a rundown on it.

Essentially Grace has a genetic mutation on two of her chromosomes within her cancer cells. They've switched places on her 8 and 22 chromosome (normally it's 9 and 22, more on this later). This translocation means that her cancer cells replicate like a kamikaze explosion, putting her into the high-risk category. It means that chemotherapy alone (even aggressive chemo) can't keep up against her genetic mutation. Back in the day, before the original inhibitor called Imatinib was created, cancer patients with this mutation were given a 20% chance of remission. After it's creation, the cure rate shot up to 80%.

The only problem with Imatinib is that patients can become immune to it. So they came up with a second generation of the medicine called Dasatinib, which is essentially the same drug as the first but will keep patients from becoming immune, therefore making cure rates even better. The FDA has not approved this drug yet, but trials on adults have been very promising. We thank God that Grace got accepted into the trial so she can have access to this medicine.

We've had a lot of recommendations for alternative therapies for Grace from friends. In order for Grace to stay in the trial we will have to limit other methods used. We're juicing and eating healthy but it's not likely that we'll be able to use herbal remedies or essential oils or food as medicine alternatives. We appreciate all the research our friends have done on these for us, but we do feel God leading us down another path for now. If that changes we'll be sure to reach out to you.

We'll see how Grace does with the meds tomorrow. Her regular chemo is starting to show it's bad side. Typical with the steroids she's taking as part of her regimen, she's swelling in her tummy and face. She's ALWAYS hungry, asking for salami, Pho soup and scrambled eggs all day long. No kidding, she eats more than me. I think that it's stretching out her tummy too quickly so she complains of her stomach hurting all day and is nauseous on top of that. She tires easily, so running, dancing, bikes and scooters are all out. She also gets legitimate mood swings and her sense of smell is heightened. Pretty much like being pregnant but without that "magical glow."

Please keep us in prayer for tomorrow, as I know you all do. We so appreciate all your love and concern and prayers. Know too, that we'll soon be doing a blood drive in honor of Grace in early March. As Grace has needed five blood transfusions in the last two weeks, we are thankful and in an eternal debt to blood and platelet donors.

When people are the miracles

I can always tell when people have been praying for us. The last post was after such a crummy, hard day. And I know it got people praying because the next day was significantly better. The prayers have meant so much to us. And people have become miracles to us. We've been blessed so much recently.

We have several meals in the freezer and fridge with the promise of more through March. My family and in-laws have been caring for Luke and helping Grace transition home, and cleaning our house for us and doing our laundry.

We've had people that we love, people we know of, and friends of people we know of, take care of us. We've been given tea and snacks and pho, handmade blankets, hats, and picc covers, toys and activity kits, hair clips and cute towels, fancy pjs and princess socks, gift cards and checks.

The love and warmth and generosity shown towards us has been unbelievable. Really. I opened unexpected cards today with gifts in them and stood there with my jaw on the floor. And what do you say in moments like that? Thanks doesn't seem to do it but it's all I have. I want to cry and laugh and hug but mostly I just stand there with my mouth open.

We also wanted to add for anyone who has been so generous to help us with medical bills- we are opening an account for this money. We hereby promise to only use it for Grace's medical bills and associated costs. Should there be any excess, we will be donating it to a children's cancer non-profit or CHLA. Just so you know.

Here are a few more highlights of how we've been cared for:

I thought you'd all love this. This eight-year old is the son of my brother-in-law's friend. He's never even met Grace but he wanted to do something to help. He had a lemon"aide" stand (in the rain) at a park and raised $118 for Grace. (video coming ASAP).

The Elizabeth Macdonald Foundation came and gave Grace a free trim to help her adjust to the concept of losing hair. Pamela Hobby and Ivan the hairstylist were the ones who helped talk Grace through the trim. I think Pamela is probably the prettiest woman I've ever seen in real life. She told Grace how she lost her hair from chemotherapy as a child.

Grace was also visited by the Dodgers (more photos on their blog) at CHLA's child life support playroom. Here she is telling Matthew Kemp that she wants to be a soccer player when she grows up. He totally went with it and told her he likes soccer too. What nice men they all were.