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.

Tuesday, October 14, 2014

Starting Chemo Again

The last month was like a breath of fresh air. No chemo for an entire month, and only two bumble bees (aka port access) and one EKG. Grace's counts were so high that she was able to go to pumpkin patches, play with friends at the park and ride her scooter.

Last night Grace started steroids again, which is surprisingly a form of chemo. It's not an injection, only pills, but steroids can be very difficult, especially at the doses she takes. She's only had one dose and last night at 2am she woke up hungry. When she first started steroids in month one, she would sit down and eat for two hours straight. Literally. And they made her so weak she couldn't use the bathroom by herself. The mood swings are terrible, they leave her sad and confused. Steroids are no fun. She'll be on and off them this month and next.

Grace will also be starting IV forms of chemo next week. She'll also be trying PEG which is a very potent chemo drug, but it has side effects. One of Grace's new buddies just had a very scary anaphylactic (allergic) reaction to it. Grace's oncologist thinks it's what gave Grace pancreatitis last time. But it's such an important chemo that her doctor wants to try it again. Thankfully Grace was already on morphine when she had pancreatitis before, but she wasn't allowed to eat or drink for three days straight. So if Grace gets it again, it's a safe bet we'll be inpatient again for a few days minimum.

She will also become nuetropenic again soon...and right in time for the flu season. So if you will be around her this winter, please get a flu shot! I'm already anticipating the very real possibility that we'll be inpatient often this winter, but praying that it won't be too often.

Grace's oncologist also warned us that Grace's new hair will all fall out again shortly, as will her eyelashes and eyebrows. Her face will be swelling again. But she'll still be our Grace. Our beautiful Grace. Thankfully Grace already knows at a young age that her smile is the most beautiful part of her, and chemo can't take that away.

Please be praying for Grace and our whole family as we start the last two months of chemo (before we start a year of low-dose chemo in maintenance) this week. The last two months before we had our month off were difficult, though certainly easier than before. We need God's provision and strength to continue on strong.

Monday, October 13, 2014

Ella is being distributed to Children's Hospitals!

Look who we met at CHLA today! One of our favorite child life therapists holding one of the Ella dolls that Mattel donated this month! We're so happy to hear she went to lots of kids with cancer there!

Grace plays with Ella a lot more recently, which is ironic as her hair is finally growing back. We did learn yesterday from her oncologist that it will all fall out again very soon. At least we can enjoy it for now.

Grace makes choices

The other night at dinner started fantastic. Grace sat with her face scrunched, her eyebrows as deep down as they could go, and in her scariest voice told us stories about a haunted house. Then three-year old Luke would chime in and say "scary shadows," while mimicking Grace's scary face. It was hilarious. 

After her story she decided to not only drink milk from her cup, but to also practice her balancing abilities while at it. She only used her mouth to hold her cup, not unlike a seal trying to balance a ball on it's nose, and it was about as messy. She was told that her drinking method was unacceptable. As she is an alpha female in a five-year old body, she decided it was as good a point as any to stand her ground. She was asked to leave the table but refused, instead she grabbed onto her chair like it was a life preserver on the Titanic. 

"Uh-oh," I said, using our key word for, "This is about to be a problem...for you." She didn't budge. "You can walk to your room," I said, "or I'll be happy to carry you." She was still holding her chair. When I picked her up to carry her she grabbed onto the table cloth, spilling all of our dinner onto the ground.

My husband Chad and I wanted to find a consequence that would teach, rather than just punish, but we didn't have any idea what that might be. So we did what most good parents do. We googled it. Thankfully "Love and Logic" had just the right solution. An "energy drain." An energy drain is whenever a kid zaps your energy with their bad behavior and they are then responsible for helping you get it back. It's always at a personal but a fair cost. And always with empathy and kindness when the verdict is delivered.

Because Grace made our dinner so unpleasant, we decided that we would need a grown-up dinner at a nice restaurant without kids to get our energy back, and that Grace would pay the baby sitter. Luckily, her babysitter accepts toys and allowance as payment (we paid her in cash afterwards).

When Grace was allowed out of time-out we told her the consequence, and that she would need to pick out a toy to pay the babysitter with. We were expecting a major meltdown at the news. But as always, Grace completely surprised us. She picked out her newest and most favoritest Elsa doll that she had just spent the last ten weeks saving up for. We explained several times that it didn't have to be that doll but she felt strongly that it did. She even went as far as to gift wrap it and colored a card to go with it. 

She wasn't upset at all, in fact we suspected that she was secretly feeling really good about it. (She mentioned the next morning that we were mean for making her get rid of her doll, but I told her that most parents would just yell or spank. After that she didn't complain again.) Chad and I think that kids have a more intense sense of "fair" than we do, and when they know that they are making it right again, they feel good about it. Grace is young but smart and she knew she really blew it that night. We think she was happy to have a way to put things right.

The next night Grace decided to test her limits with extremely bad manners again. 

"I'm so happy," I said to her complete astonishment. "I really had a great time with your dad last night at our dinner. Will you be paying for another babysitter tonight?" 

The bad manners totally stopped. Instantly. The best part was that I didn't have to yell or even get mad. In fact I was a little disappointed she cleaned up her act so quickly. I was secretly hoping for another night out. It turned out our family dinner was nearly just as nice at home that night, even though I had to clean my own dishes afterwards. And Grace learned that if she makes a mistake can feel good about herself when she makes it right.

Thursday, October 9, 2014

Grace was featured in the CHLA blog today!

Young Leukemia Patient Breathes New Life into Barbie DollBig round eyes, the biggest smile one will ever see and a beautiful, bald head. These are characteristics shared by Ella, Barbie’s doll friend made by Mattel, and Grace Bumstead, 4-year-old patient of Children’s Hospital Los Angeles who is currently fighting Ph+ acute lymphoblastic leukemia.
Grace was diagnosed early this January with a rare form of leukemia and received Ella as a gift from Alina San, child life specialist at Children’s Hospital Los Angeles, to help her understand the process of her cancer and the chemotherapy that she will receive for the next two years. “Magical and medical play is important for children Grace’s age,” says San. “Ella has helped Grace see what will happen and has encouraged her to ask questions.”

“If the pain that we’re going through right now can help someone else, it makes it feel like it’s worth it,” says Melissa Bumstead. Tweet.

Ella and Grace (as well as her Disney Princess dolls, Ariel and Rapunzel) have attended many doctor appointments together to allow physicians to physically show on relatable Ella where a shot or bandage might go. The doll even came along to Grace’s hair appointment to help her visualize that she can be bald and beautiful, like Ella. “We always tell Grace that even though Ella does not have hair, she is always smiling,” says Chad Bumstead, Grace’s father.
Although Ella is not Grace’s most prized doll, her parents, Melissa and Chad Bumstead, and Paul Gaynon, MD, oncologist at Children’s Hospital Los Angeles believe that Ella will Young Leukemia Patient Breathes New Life into Barbie Dollnot only help explain a confusing disease, but also remind Grace of a struggle she overcame and hopefully will never revisit. In fact, the Bumsteads believe in the positive role Ella plays so much that they began a petition to ask Mattel to donate more Ella dolls to children hospitals around the country.
“If the pain that we’re going through right now can help someone else, it makes it feel like it’s worth it,” says Melissa. In just three months, the petition grabbed the attention of more than 100,000 supporters—causing Mattel to take notice and agree to make and distribute more Ella dolls.
It is no question that Ella and Grace both share beautiful features, but what Grace also encompasses is a strong personality and sharp wit. At just four-years-old, Grace already knows how to command a room. “I used to ask God why he gave me such a rambunctious child, but now I know why,” says Melissa. “She had to be a fighter.”
To watch Grace’s first reaction to Ella and more information on the petition, please click here.

Thursday, October 2, 2014

An off day

Today I got to spend the day with this guy. He and I both woke up with fevers, so Grandma took Grace for the day so we wouldn't sneeze on her as much, in an effort to keep her healthy. Thankfully her ANC is high and so far she's not had more than the sniffles.

It's been a long time since I've just been able to hang out with Luke. And because I was too sick to do laundry or dishes, I didn't. That gave me time to watch movies with my boy, make sand birthday cakes and to just listen to him. I am amazed at how much he is talking now. And I'm amazed at how much he loves Grace. He's talked about her all day, asking again and again where she is, even though he knows she's at Grandmas. The first thing he said after waking up from nap was, "Where Gacie?" He worried about her missing snack, dinner and every sound has been, "Gacie home."

Even though we were too sick to do much, it was good just to be around him. I am so relieved that in all the chaos this year he's adjusted so well. Sometimes I am overwhelmingly sad that I've spent twelve weeks away from him already this year. I am as equally happy that Chad did such a good job taking care of him, as did his Grandma and Noni and preschool family. I know that's why he's doing so well when we could be dealing with attachment disorders.

We have another week and three days of our "break." Grace has been doing amazing. Chemo free her hair has been growing, her face is full and pink, her stomach isn't bloated. In all, she has her shine back. Next week she'll have an EKG at Children's Hospital, but she's so glad that it's bumble-bee free.

The week after we'll start chemo in earnest again. Steroids will again be prescribed and we'll be dealing with a swollen, hungry, emotional girl again. They'll be giving her the same chemo we had most recently so a very long-term and low ANC is likely and may last through January. We'll be at the hospital once to twice again on a weekly basis. 

They'll also be trying PEG chemo again, which may have given her pancreatitis before. Her Oncologist said it's an important chemo so she wants to try again. Please be praying that it doesn't effect her this time.

Ok, I feel too blah to write anymore. I haven't had a cold since January when I had three different colds back-to-back, up until the day Grace got diagnosed. God was getting me past the flu season as quickly as possible. I don't think it's any coincidence that I'm only sick now that we're on a break again. As I normally get sick very easily, I know that my good health this year has been because of God's hand on us.