Wednesday, December 17, 2014

Small Obedience


This last stint at CHLA began last Friday, so five days now. We're still waiting for her ANC to go up and there's simply no guessing how long that could take. Friday in the ER her heart rate rose dramatically and her blood pressure fell and rather than send us home they admitted us. 

I'm so thankful that they kept us here. Last night, with Noni (Grandma) spending the night, Grace got chills, another fever and her heart rate rose and fell erratically. That means that her body is still fighting off an infection. Although she is feeling great today and playing tons, she is still fighting for her life. 


Thankfully with one night off and some good sleep, I'm not as despondent as the last stay. Instead I'm taking cues from my brother-in-law Devan and his wife Tina on patience. I realized that God knew we'd be here in the hospital before He created the world and this is not a surprise to Him. That means that if He planned it, then there is purpose here. 

There's purpose in loving our neighbors, like the strong little roommate we had who had brain surgery this week Grace brought a cupcake to. There's purpose in getting to know our nurses better. There's purpose in being strong for the other cancer mommas on the floor. Most of all there's purpose in serving my daughter and helping her through such a long, sometimes painful, often boring, journey. 

There's also purpose in obedience. I used to want to be a hero. Ever since I was little I dreamed of saving the world with superhuman acts of awesomeness. Now I'm starting to see that little acts of obedience can be used, and I think in many ways preferred by God. In Luke 11:28 Jesus said, "Blessed...are those who hear the word of God and obey it." 

My obedience today is to accept being in the hospital. My obedience today is to have a willing attitude to learn while we're here. My obedience today is to be patient. My obedience today is to not pity myself but find ways to be thankful. My obedience today is to play Barbies for hours with my eager daughter, even when she catches a bad case of the "silly-naughties." 

We hope to be home before Christmas, but even if not, there are still lots of reasons to celebrate. 


Wednesday, December 10, 2014

Emmanuel

Some days it's easy to feel like God has become silent. When were surrounded by the hard details of cancer, I sometimes I feel like God has left us. 

Today I was thinking about Christmas during our 5am drive to CHLA. I had been reading about Jesus' name given to him by the angel. Emmanuel. God with us. I was reminded how God purposely came into the world of his people. A world of disease and death. 

Sometimes when I feel distant from God I also feel guilty. I feel like the disconnect is my fault and that God must be upset with me. I remembered this morning how Isreal disobeyed God and they were punished with forty years circling the desert. They were on the naughty list and still Gods presence stayed with them those forty years. He never left them though He was very angry with them. 

He's not the type of God who punishes us by emotionally blackmailing us. He doesn't leave us. He's a quiet God by nature. He wasn't in the thunder or the earthquake but in the gentle whisper. Jesus wasn't loud and showy but humble. Sometimes I mistake Gods quietness for distance, but Jesus' name at birth reminded me of His nature. God with us. 

I was really encouraged by that today. I am always so thankful that it's not just Me holding Graces hand at the hospital, but that God himself comes with us. His presence is with us through every step.  

Monday, December 1, 2014

Bruised but not Broken

I've been searching lately. Trying to get back to the time when I was unshakable in faith, hopeful and strong, fearless and courageous. And I've been praying again and again for God to help me to trust, to have faith in his plan, to hope for miracles again.

I've been praying more lately, reading more of the Psalms, trying to listen to worship music. In all honesty...nothing has worked. I still feel small, weak, tired and faithless.

As I was praying today I felt God speak to me and He asked me if I was weak, or if I just felt weak. I thought that I was weak but He showed me that though I feel weak, I am still doing the things that need to be done. I am still strong, though I feel weak.

Then He asked me if I had lost faith in Him. I thought I had. But He showed me that even though I feel like I've given up, I continue to seek after Him and pray. My relationship with God isn't dead like I thought.

We tell Grace all the time that being brave doesn't mean you don't feel scared. Being brave is doing the right thing even if you are scared. I realize now that being strong isn't about feeling that way, it's how you act regardless of how you feel. Trusting in God isn't about happy feelings, it's about following Him even if it feels like the heavens are quiet.

My emotions are not the whole truth, my actions are a better thermometer for now. I think that accurate emotions will follow again eventually, but I need to be careful not to rely on them to make decisions, even about myself, for the time being.

Knowing that that I'm bruised but not broken, I can go on. And if I need more examples of how to be brave, strong, faithful, courageous or hopeful, I just need to watch my daughter Grace in action.  She knows how to do all those on a daily basis.


"A bruised reed he will not break, and a smoldering wick he will not snuff out. In faithfulness he will bring forth justice;" Isaiah  42:3


Friday, November 28, 2014

The week of the NG tube


We've been inpatient at the hospital six times in the last month. Last Thursday we went in for a fever, discharged Saturday night and readmitted by Monday afternoon. She wasn't allowed food until Wednesday, and even then it was chicken broth and jello only. Thursday her Thanksgiving feast was made of super-soft foods such as Talapia, chicken soup and jello in her hospital room. But you've never seen a child so thrilled with food.

This week was shaped by lack of real food. Grace chose her cartoons and movies based on if they showed food or not...and if food was presented, off the TV went. She was hooked up to a suction NG tube, so she spent most of this week coloring in bed and telling me how hungry she was.


I think I've been worn down just from the lack of sleep. The night normally looks like:

8:30pm Grace fights taking her meds. Finally does and goes to sleep
9:00 I resolve to go to bed early
9:30 Cleaning lady comes in and takes out the trash
11:00pm Grace has to go to the bathroom because they have her pumped with fluids and needs help
12:00am Grace gets a midnight does of oral medicine which she fights for 1/2 hour
3:00am Grace has to use the bathroom again
4:00 Nurse assistant comes to take her blood pressure and temperature
5:00am Nurse assistant comes to empty urine out of bathroom
6:00am Grace gets her morning dose of oral meds. Declares she can't go back to sleep
6:30am We're up and Grace is watching cartoons while we wait for her jello to arrive

After a week of this I just shut down...but in reality it's been more like a month of this with a few days off here and there. I'm so thankful that Chad offered to cover for me since he had time off work. I came home yesterday and played with Luke and had Thanksgiving with my family and went to bed early and took a nap today. I feel like a new mom.


It's probably just the lack of sleep that had me very emotional this week, but I think there's more to it. Thanksgiving made it glaringly obvious that our family was separated and because it's flu season, Luke couldn't even come up to her room to hug her. That was really hard on me.

Also I've felt very responsible for Grace's constipation. The doctors kept telling me to do this, and do that to help her and I assumed that I had failed since she kept getting hospitalized. We had a really nice Doctor who explained to me that GI Neuropathy isn't something that I could have fixed no matter how hard I tried and that it wasn't a failure on my part. I burst into tears and she hugged me for a while.

Later that day Grace had art therapy and her therapist talked to me about Grace maybe not expressing her needs or wants. Normally I'd say this isn't common but it worried me. I have such a hard time expressing my needs or voicing my pain. I'm always fighting to be positive and sometimes I don't allow myself to hurt. I worry that I'm forcing this on Grace too.

The therapist suggested that I also work on feeling more while at the hospital. But I can't. When I'm there, I'm "MOM."  I have to be strong because I don't want Grace to have to be the strong one. And even if I were to be scared or sad or angry or any other emotion, it doesn't change anything. Even if I'm mad enough to swear that I have to pin my daughter down for yet another NG tube, I have to still pin her down. I felt furious that I told her if she worked hard to take her laxatives she wouldn't have to do this again, but it didn't stop it. I felt like I had betrayed her. But being angry or sad or scared doesn't stop it. I still had to hold down my screaming daughter while hoping that lots of hugs after might somehow compensate.

Sometimes I want to be forcefully happy because it's the only thing I can actually control and also I want to piss off the "bad." Sometimes I want to be happy because life is continually hard lately and I'm scared I'm going to be a continually sad or angry person. Sometimes I'm scared to sad will take me over and I won't be able to escape it. Sometimes I'm scared being sad will make people not want to be around me. And most of all, I don't want Grace to see me sad and think that she's making me sad.

So I bottle it up, at least while we're in the hospital. The problem was I was so tired that it kept leaking out. And though I fight for faith in times like this, I remember all the ways He has protected us and brought us this far.

Now that I'm home the pain is still here, but bearable again. And now that I can go into my own room at night I can deal with the pain without worrying I'll wake Grace up. With some of the tears gone there's starting to be room for genuine happiness again. Luke has been providing laughs in excess. Grace's NG tube is out. That makes me very happy. Grace and Chad are on their way home makes me extremely happy. The uncertainty is hard, but I'm glad the doctors are getting better at figuring her out. I know that we can be back in the hospital again at any time. Day by day I have to trust God to get us through it.


And I think happy will be my natural state again soon and fear and sadness will be the exception.

P.S. There is a study at CHLA that is trying to see why the chemo Vincristine (the very one that started all this trouble for Grace) effects some children more than others. They have a theory that it might have a harder time exiting the body for some kids, thus making their exposure to the drug much higher. They think this may have been true with Grace as she's had SO many reactions and side effects including not being able to walk, the constipation, GI neuorpathy and possibly even the mucisatis. These kinds of studies could make a HUGE difference for children getting chemo. These are the studies that only happen with mostly private funding. If you're looking to donate to GivingTuesday, please consider childhood cancer research. Thanks.


Saturday, November 22, 2014

Until We Have Faces

I feel like God continues to pick out the right books, open to the right chapters, and place them in my hands when I need them the most. I always start the books not knowing that God is answering my prayers for answers. I despair from His silence until I read the sentence that sets everything right and I realize He was not silent. Just patiently waiting. 

I have not felt God's comfort much lately. (That's not entirely true. Last week when I felt I would have to battle the doctors to convince them to admit Grace He reminded me that He would fight ahead of me, and certainly He did. But His words, though comforting, couldn't seem to reach into my heart enough to warm it back to life. Nothing could.) 

No food, tea, wine, music or book have brought comfort. Rest has not been restful nor recreation enjoyable.  Small pleasures became cold too quickly. All prayers seemed to dissolve into the empty sky.

I just finished reading "until we have faces" by CS Lewis. In it the main character charges that the gods have never answered her questions. What she discovers is they could not, because until she became her true self, she would have never heard the answer anyhow. 

I realize I have become a different version of myself. A fighter, protector and survivor. These are all good things. But I have distanced my heart, hid it, so that my pain could be bearable. By doing that love, comfort and joy have not been able to reach my heart either. 

I now know why I haven't heard God, but I'm so thankful he reached out to me in a way he knew I could learn, through reading. But I had to shed my protection to become my true self again. 

It's only been half an hour since I read the final chapter, only fifteen minutes since I resolved to bring my heart back to the surface and to take off my many masks. It's a weaker me, a more vulnerable me, certainly a more fallible  me, but I feel like I can breathe again because it is the real me. 

And I thank God for answering my prayers to find me, even when I couldn't find myself. And breathing deeply again I can see Grace's smile and be warmed by it to my core again. 


Friday, November 21, 2014

Fever Mystery Theater 3000


Grace woke up from her nap Thursday with a 100.8 fever and within minutes we were on our way to the CHLA emergency room. As soon as we got here the fever was gone but it takes 48 hours to grow a culture to confirm an infection so we're here for observation because her white count (the ability to fight infection) is at zero. Well, 0.02 but to be safe we're here and she's on three antibiotics to protect her.  

I had assumed we would be here for constipation this weekend again anyhow, but the fever beat us to the punchline.


The thing that makes her constipation situation more complicated is...cancer. It compounds everything. They can't do enemas for cancer kids and so options are limited and everything that can help naturally is hard to make happen in real life because of...drumroll...cancer. 

The vincristine chemo she got three weeks ago slows down her intestines so that her body literally can't squeeze the stool out. The sitting stool becomes dry and blocks all other stool. That causes her intestines to swell up like an overinflated balloon which creates more space for stool to become stuck. 

She's on Myralax three times a day, magnesium citrate twice a day, which cramps the poop out, plus stool softeners. It's a VERY strong combination of laxatives, and the only next step is the NG tube with GoLightly, a colonoscopy cleansing medicine that they don't like to use often. And still today she strained for twenty minutes for just a small amount of poop. Even with industrial strength laxatives. 

The doctor gave me a list of seven or eight things we can do at home to help her and before God, I've been doing my best. I feel like keeping ahead of her constipation is like balancing a dozen spinning plates and if one begins to wobble, the entire act will come crashing down. 

We've tried every manner of prune, plum and apple juice, plus having her drink tons of water. We cut out milk and cheese. Bran, prunes, raisins, lentils, beans...I've tried cooking with all of them but she's so nauseous from the constipation she often can't eat or is very picky because everything is tasteless and/or tastes like metal. 

I've been trying to help her walk and we even went swimming in an attempt to get her exercising to fight the constipation but she wears out quickly and with her fever she can't leave her bed often as she's hooked up to an army of monitors.

We've tried warm baths, re-potty training, healthy foods, warm compresses, taking coconut oil...  

The thing that scares me the most is that she'll stop eating and drinking when she's constipated. For days. Which of course means she gets dehydrated which makes the constipation worse. 

It feels like every time we come to CHLA and get a new doctor/nurse team they want to wait until she's vomiting and in level eight pain before starting the GoLightly. That means I have to be very assertive to get her help, which stresses me to no end as I'm not very confrontational and it's very hard to balance listening and accepting advise at the same time being assertive and demanding help. 

But overall it's a happy stay. She's not vomiting yet and is feeling pretty good and eating more than normal. It's just I can see what's coming next and I don't want to be back here in two days with a miserable, vomiting kid. But today we enjoyed our friend Baby Bailey, a treat of of chocolate cake for eating her veggies, and most of all, the CHLA winter wonderland. Which was wonderful indeed. 


Monday, November 3, 2014

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.