Smarty Pants

Emma slept over at my Mom's house this past Friday night; then they flip-flopped and Hannah spent the night on Saturday. By Sunday, Em was having "Grandma withdrawls" and was requesting "pretty please" to go hang out at Grandma's house. I really wanted her to stay at home despite the fighting with Hannah and her begging to leave. It's weird when they're apart for too long (though a nice break, I must say). My parents came over in the evening to steal her away. After an hour of begging, a snippet of conversation with Emma:


Em: Mommy, please can I go stay at Grandma's house? Pretty please?!

Me: Well, honey, you already stayed at Grandma's this week. You just got back the other day.

Em: But Mommy (in whiny voice). But, I miss Grandma.

Me: Emma, I know you miss Grandma. But you were gone and I missed you. Don't you miss me?

She stopped for a minute. I thought I had her convinced to stay. She looks up at me with those big eyes and says:

Em: But I will miss you, tonight.

Too clever. How could you say no to such a smart response? I conceded and she had yet another victory.

One of Us

(In case you didn't see, I posted some photos of Emma's Daily Routine in my previous post. Please scroll down.)


Coming to a place like a hospital you can find people like you. Parents, patients, people experiencing the same thing. So there is a kind of comfort in that, I guess. Don't get me wrong, I'd rather not be there, but you make the most of what you have. And this is our life for now.

When we started radiation, we heard that in a few weeks there would be three other kids starting treatment with us. Ugh. You never wish this type of thing on anyone else. And the sad part is, I know most people have it worse than us. Mike and I have always said that although we've been dealt a crappy hand, we are still fortunate because it could've been worse. We thank God that she is doing so well, and we thank everyone for all of the support and prayers.

Sorry. I get carried away sometimes. So back to my story. Peggy told us that there would be more kids starting out. Not all brain tumor kids, but some with different cancers too. A 14 year-old boy, a 5 year-old girl, and a 6 year-old boy. Later, we'd be joined by a beautiful 15 month-old baby girl named Ella who has a bone tumor in her leg.

Through the weeks, I have met all of these kids and their parents. They become familiar faces, finding you everywhere you go. At first you just smile and wave hello in passing, then later, you speak, then later you pour your heart out. You become one of them, and they, one of you. We are like a big family with no secrets, sharing the same hopes and living the same pains. All of us praying for strength for our children.

Maria
I spoke to Maria's mom last week. What a strong woman. Maria is five; a beautiful girl with a Rhabdomyosarcoma tumor in the ear, throat and jaw, ravaged by chemo and her disease. Her mom told me the story of a visit to Kemah in the summer, everything normal. Then the next day, her little girl was different. It took months and three different doctors before the right diagnosis was finally made. The only reason they ordered the CT scan was from Marilyn's aggressive urging. She knew how to read a CBC (blood test) report from when her son had Leukemia at age 3. He too was misdiagnosed. With her boy, they lived in hospitals for three years. They beat it though, and he is now 11 years old.

Maria would go through 28 treatments of radiation and 52 weeks of chemotherapy. One year. Ugh. They are from California and the doctors dissuade them from going home. She has been living in a hotel for the past few months.

Marilyn told me that she spoke to another patient's parent there, the 6 year-old boy's mother. He's not looking so good. Very small chance, she said. Maria has a 70% survival rate, she told me. She asked what Emma's was. Then it dawned on me, I didn't know. Truth is Mike and I made a pact when this all started and decided that we didn't want to know. No one wants to be stuck behind a number. Especially Em. I didn't want to find out what her odds of survival were. I knew it would just eat me up inside. So I don't have a number for her. But I know she is strong and we will beat this. We just have to.

Daily Routine

Mornings at Methodist
I've become a good driver through rush hour traffic. Every morning I get up at 5 am to ready myself for the long days of treatment. Emma gets up at 6 am and Hannah a little later as Mike will take her to school right when it opens up at 7. Sometimes she stays with my Mom. Neither child is fed. Hannah eats breakfast at school, and Em can't eat until after her radiation treatment. An empty stomach reduces the risk of vomiting while under anesthesia. Its safer. (You've heard of choking on your own vomit, right?) This means no breakfast until almost 10 o'clock. If she has an appetite, that is. We leave at 6:45 am; our appointments are at 7:20.

Every Monday morning, the routine is to sneak into her room in the dark and rub some Lidocaine cream on her "button" at 5 am. We call it her "medicine button," and rarely refer to it as a "port-a-cath." The Lidocaine cream numbs the area, so that she can't feel the poke of the needle. Thank God too, because that needle is really huge and thick. Think of the thickness of a thumbtack. Eek. This thing sticks out about an inch and a half from her chest when inserted. Yuck.

When we get to Methodist and see Nurse Peggy, Emma is always happy to be there. A new adventure for her. They have two waiting rooms, one for adults, the other for the pediatric patients. We play with all of the toys in the waiting room until Dr. Fromberg, the anesthesiologist, comes to take her to the back. He's such a cool guy.

Dr. Fromberg is in his mid-70's and reminds us a lot of Mike's dad. So Emmy calls him "Papa Fromberg." And they hug like old pals when they see each other. Cute. He calls her port tubing her "noodle." This cracks her up. "Where's your noodle?" he asks her. At first she was really scared. But lately, she's been helping him push the Propaphal (sedative) and seems to be okay with it. Until she starts to feel the effects, then she panics a little and grabs at you until her eyes roll back and she falls asleep.

One of us--me, Mike or Grandma, holds her little body on the treatment table until she is put to sleep. The radiotherapists, nurses and anesthesiologists (a team of 5-6 people) immediately go to work. You don't even get a chance to give her a kiss on the cheek. We move to the waiting room where the coffee is fresh and heavenly and sit around for a short while. There is a Starbucks upstairs in the lobby and Mike runs up there to buy a cup of warm milk for her to drink when she wakes up.

Treatment takes 12 minutes. That's all. I never get to finish my coffee. They are just too fast. We wait back in the PACU (post-anesthesia recovery room) where Peggy monitors her vital signs for 20 minutes before waking her up. We have gotten to know Peggy and the gang well. They are like family now. Peggy has the gift of cold hands among other things. They are like Popsicles, I kid you not, and are perfect for waking up a patient in recovery. If that doesn't work, wet paper towels on the face do the trick pretty well too.

They call that "responsive" when she opens her eyes and gets angry for being awakened. They want her responsive before they release her. We load her in a stroller and head upstairs to the lobby where we let her sleep it off. If she sleeps for 30 minutes, it will be a good day. If not, then Emma is angry--really, really angry and full of tantrums--for the rest of the morning. Apparently, anesthesia makes for angry people.

The lobby at The Methodist Hospital is made to mirror a hotel lobby. Wide open spaces, atrium, comfy couches, coffee bar (serving Starbucks--very important), "wishing" fountain as Emma calls it, and to complete the touch, a live pianist on a baby grand piano. Very soothing. This is where she sleeps off her anesthesia, while Mike and I plan the rest of our day before heading out. When she's awake, we throw coins or "coims" in the fountain while we wait for the cars from valet. I make my daily wish that she gets better and throw in a quarter for good measure. Quarters are better than pennies in wishing wells, right? By then its close to 9:30 am and Em and I are back to the house, or to Grandma's house, and Mike is off to work.

Em playing in the pediatric waiting room.

The Lulu's go everywhere.

Sleeping Beauty.

Afternoons at Children's
We spend the next four hours trying to get Emma to eat and nap. The nap is a rarity; eating is a little better. We've found her appetite has totally weaned since she started radiotherapy. She has been losing a pound each week since the beginning of August. We are trying to fatten her up by feeding her sweet, fatty foods. Unfortunately, or fortunately, what have you, she doesn't have a big sweet tooth. We feed her anything she will eat, anything. Popcorn and milk is a fine meal. We are battling with weight loss issues in reverse.

We are back on the road by 1 pm to make our 2 pm Speech Therapy class. At 3 pm, its Physical Therapy, and 4 pm its Occupational therapy. These classes are three to four days a week, but I think I might scale them back to 3 days a week. Its just too hard for us on an almost daily basis. Plus the cost of gas and parking, oh! Parking is killing me!

The therapists speak with us daily at the end of each class and talk about her overall progress and what tasks she's done. She is doing great by the way. By 5 pm, we are done with our day and battle traffic to make it back to wherever Hannah is. This is either Grandma's house or the school. Sometimes I get to school so late that Hannah is the last one there; lights out, doors locked, the only kid left behind. Poor thing. I hope it doesn't do things to her psyche when she grows up.

Em on the scooterboard in Occupational Therapy. Pulling yourself forward through the hallways helps to strenghten the upper body.

Working on fine motor skills with a tweezer used to "feed bananas to the monkey" (its a game).

"Great job!"

Riding a pedal car in Physical Therapy helps with gross motor skills. Plus its fun.

In the gym with Ms. Stephanie; working on the balance board while trying to play ring toss. Very tricky.

Hope

I've had a pretty good week so far, emotionally. Emma is doing superb, don't get me wrong. But I've been working on trying to keep my chin up. Truth is this sucks. Bad. I've been emotionless and tough from the beginning, and it is slowly starting to wear on me. Today was hard.

Lately, I've been looking for answers and hope. First of all, you must understand that Ependymoma is a rare type of brain cancer. Only 8-10% of all pediatric brain tumors are Ependymoma. So what that means is there is very limited research on this specific type of tumor, and also limited ways of treating it. Chemo doesn't work and radiation is the only thing there is, really.

On top of that the scope of research for pediatric brain tumors in general is limited. Government research funding and even awareness is limited. Human nature is to look away until it happens to you, right? So sad. Everyone's heard of Susan G. Komen and breast cancer awareness, with the little pink ribbons. Everyone supports that. Ok. Heart disease, colon cancer, even Leukemia. Ok, fine. But childhood cancer. Where is that?

So I'm looking for hope. Hope in internet research. Hope in the stupid online support group forums that are out there. Sure there are ones for pediatric cancer. More specifically pediatric brain cancer, but there are hardly folks on there with kids with Ependymoma tumors. Much less with the great prognosis and recovery that we have with Emma.

So where is it? Where is the hope? I want the stories of hope. I want to hear news of good surgical and treatment outcomes, and good survival rates. But I can't find them. It scares me. I can't seem to find that one good story of a kid that got diagnosed with Ependymoma and beat it and lived to adult old age. One that lived with a normal life, with no feeding tubes, and no blindness, and no slow mental ability that was a side effect from radiation. I'm sure that person is out there, but I'm still looking. At the same time I don't want to ask. I don't want to ask the doctor and have him tell me that life span is less than I expect. I don't want to think of stuff like that for my girl. My Emma.



Thanks for letting me vent.

Treatment 15

We are halfway through with radiation. Yay! And pretty soon, all of our therapy appointments should be ending and we will get back to a normal life--I hope. Therapy appointments (speech, occupation, and physical) all go for about three months outpatient. Then they will re-assess and see if Emma still needs to be under their care. Hopefully they will send us home and we can resume school, dance class, and the things she loves very soon.

Gilberto

This morning we went to radiation as usual. Emma is the first pediatric appointment of the day. It seemed a pretty normal morning. Then they wheeled in Gilberto.

Gilberto was a normal 14-year-old, 9th grader until he was diagnosed with an aggressive brain tumor. He has undergone surgery to remove the tumor, as evidenced by his scar over his right ear. I believe he has 30 treatments of radiation as well. He's such a sweet kid; always with a smile ready to greet you. But this day he wasn't smiling. He was reclined in the wheelchair they brought him in on, eyes rolled back, seizing.

I was sitting on the waiting room chair and turned to greet Gilberto and his mom when I heard the doors open. I didn't panic when I saw him in a seizure. Neither did she. Apparently, this type of thing happens to Gilberto all the time. The nurses ran in and brought him to the back to stop the seizing. The whole event lasted about two minutes. We later found out that he was taken back to Texas Children's ER in an ambulance.

I froze when I saw him. What was I supposed to do? The nurses stepped in the minute he came through the door. There was nothing I could do. I just sat in my chair and lost it. I silently started to cry, wondering what would happen to him. Would he survive this? Would the seizures eventually happen to Emma too? It was such a heavy thing to handle.

Gilberto is Mike's favorite patient. Mike always shakes his hand when we see him. Apparently, they have a little bond and crack jokes with each other. Mike was sitting next to me when he was wheeled in. He was just as shaken by Gilberto's condition.

Mike drives his truck daily to Methodist and has vowed to be there everyday for Emma when she wakes up. This way, we have two cars and he can go to work after radiation is over. So when Emma woke up and it was time to go, we split up as usual. I took Emma home to rest and he went to work. But he didn't. I later found out that he wanted to be there for Gilberto's mom. So he sat in the emergency room waiting for word of Gilberto's condition and looking for his mom to give her some support. He waited for two hours with no word until work had become too busy and he left. When I spoke to him about it he said he "didn't want her to be alone." We've never seen Gilberto's dad and don't know of his whereabouts. Come to find out that Mike waited at the Methodist ER and not at Children's. But the attempt was admirable nonetheless. We pray for Gilberto everyday.

Just Like Big Sister

So, are you supposed to laugh or cry when your 21-month-old decides that wearing surgical tape on her chest is the cool thing to do? Funny, but sad. Hannah sees Emmy wearing a dressing on her "port," so she wants one too. So we tore of a piece of plastic surgical tape and Hannah placed it on her belly. She was so proud to be like big sister.

Yesterday was a hairy day. Literally. (Ha, I'm so funny.) We started off with our normal daily radiation treatment and told Nurse Peggy that Emma had been a little wobbly all weekend long. (Not something I've noticed since I was actually working and photographing a wedding all Saturday. I was gone all day.) So the doctors at Methodist decided that we needed to go see our Neuro-Oncologist back at Texas Children's Hospital to make sure she was alright.

Apparently, radiation causes swelling in the brain that can cause symptoms of Posterior Fossa Syndrome again. After two hours of waiting for a "work-in" appointment, they told us just to watch it. Make sure her balance issues didn't come with any vomiting or nausea, or severe tiredness that she could not be awakened from. Great. If anything else occurred, then they would schedule a CT scan to see what was going on. Hopefully its nothing, but keep your fingers crossed anyhow.

As for hairy, it totally bugged me today. I would run my hand over her hair to smooth it, and so many strands would fall out. There is now a serious bald patch on the back of her head and where her surgery scar is. The hair loss goes from ear to ear across the back of her entire head. Everything that had been growing back since they shaved it for surgery has now fallen out again. The back of her shirt looks like she's been to a hair salon; its bad. Poor thing. I fear that the rest of her hair will be too thin to cover it. I am working on getting her to wear more hats and she's hesitant. It's hard to see your kid go through this. This is not fun.

Rough Weekend for Mommy

"My head's too hot for sleeping," she says. Toddler-speak translated means the pillow is too hot and I should turn it over to the cool side for her. It helps her go to sleep faster.

I lay beside her in the dark, with the night light showing me just enough detail so I can see her eyelashes, thick and black. Then her eyes flutter open. Then close. She turns over. And again. In so many different directions and contortions, its almost frustrating. Until finally she's calm and breathing heavily. Just an example of another night.

Emma likes to be in her bed best. Unlike Hannah, who desperately needs out of the crib the instant she is put in, Em likes her own space; likes to make a "nest" as Daddy calls it. The way gorillas makes "nests" to sleep in. So it normally does take her a few minutes, or 20, to fall asleep. And these days its about the same. So far. Though it seems she really moves around a lot before getting settled. It may be the Port-a-Cath and all of the tubes sticking out that make her uncomfortable. It may be a whole bunch of other things too.

They say the fatiguing effects of radiation therapy take about two to three weeks to kick in. I get that. This is day 9 of Emma's radiation treatment and she is starting to show it a little. Maybe it was just this morning, but who knows. She is pretty sensitive to it to begin with. Her hair is already thinning out. After the third day of treatment, I thought I was crazy, but I just kept finding hairs everywhere. The doctor's said that hair wasn't supposed to fall out until 3-4 weeks, but Emma's had already started to.

This past weekend had me laid up in bed with a vomit virus that Hannah brought home. Man! I literally did not leave my room for 24 hours on Saturday. Sunday was a little better. Poor Mike had to watch the kids; my Mom was out of town, so he was flying solo with no help. My sister and aunt came by to bring soup, most of which I couldn't keep down. I missed my kids--bad. They were banished from my bedroom, especially Emma who kept crying for me. It was total misery. I was still feeling like crap on Monday, so Mom (who was back by then) and Mike took Em to radiation on Monday morning. By the afternoon, I had just enough energy to drive her over to TCH and go to therapy appointments. I hadn't been sick like that in a long, long time. Beware, I heard it was going around.