New schedules can be difficult. Especially when you have to wake up much earlier than you are used to. We were a little late to radiation, and didn't really know what to do when we got there.
We got called back to the treatment room with this giant machine in it. She wanted to be held, so I carried her back; her arms and legs wrapped around me. She was hugging me tighter than she ever had; she was so scared. I explained to Emma that we are going to help her take a nap with medicine that they put in her "port," and when she's asleep they will take pictures of her head with the big machine. Pretty simple. I told her the pictures will help her headaches go away and make her feel better. She seemed to be fine with that.
The good thing about Emma is that she is really a good little patient. We are so fortunate. Apparently other kids scream and fight, but Em is just so strong. It reminds me of a conversation with my friend Kari. When this all began, I asked her "why is this happening to Emma? Why her?" Kari's response was "because she can handle it." It was a rather unexpected answer, but when I thought about it, she was right. After all, God only gives you what you can deal with, right?
Anyhow, the first day of radiation was pretty uneventful. Which is good. She woke up fine, and was quite grumpy. The only issue is she had headaches afterwards. Not sure if that was due to her skipping a nap, or the radiation itself. Though the doctors say radiation effects take up to 3-4 weeks to show. She was fine the next day and hasn't complained of a headache since.
Monday, July 28, 2008
Water Play
When we start radiation treatments, I won't be able to give her a proper bath. Too bad. She loves, loves to take a bath. The reason is because her port is accessed during the week. Every Monday, they attach a "butterfly" type needle to it that has tubing attached onto the other end. This way, they don't have to stick her daily when administering her daily anesthetic or drawing blood. They do tape this up with a dressing, but the tube sticks out and is not allowed to get wet otherwise it could get infected.
Don't worry though, they take it out every Friday, so she bathes during the weekends. And of course I sponge bathe her nightly during the week. I should probably try to just wash her hair too, but its too much work with Hannah running around.
Water Days at School
The day before radiation started, we dropped Hannah off at school. Both Hannah and Emma go to St. Rose Early Childhood Center. I can't tell you enough how much I love it there...oh, and they do too. It's such a great school. Em has been going since she was three months old and Hannah at five months. Everyone is really great and has been very supportive through Emmy's illness.
Don't worry though, they take it out every Friday, so she bathes during the weekends. And of course I sponge bathe her nightly during the week. I should probably try to just wash her hair too, but its too much work with Hannah running around.
Water Days at School
The day before radiation started, we dropped Hannah off at school. Both Hannah and Emma go to St. Rose Early Childhood Center. I can't tell you enough how much I love it there...oh, and they do too. It's such a great school. Em has been going since she was three months old and Hannah at five months. Everyone is really great and has been very supportive through Emmy's illness.
During the summer they have "water days," where the kids get dressed in swim suits and get to play in the sprinklers in the playground. They also make messes with bubbles, and shaving cream in basins of water using toys, buckets and balls. It is her favorite thing to do. Unfortunately, she got sick right when the water days started, so she wasn't able to participate normally.
So that day, we dropped Hannah off and I walked Emma over to her classroom. She was really hesitant to enter and see her friends again, but she went in anyway. It took her a while to warm up. I sensed that she knew she was not her usual self. But her friends didn't mind. They missed her and accepted her fully. They were dressed in bathing suits, and I realized it was water day. So I took her back home to change and came back to play. We were a little late as I tried to squeeze in some errands in between, but she got about 20 minutes of playtime with her friends in the water.
Her smile was so bright. She enjoyed herself so much! I will try to post some photos later.
All Clear
Not that I've found clarity or anything, in fact, I've been living in a fog since this all started. More like clarity as in Emma's spinal fluid was clear. Hooray! The spinal tap results came back a few days later and it was nice and clean. No tumor "seedlings." This is a good thing. She also made it through the Port-a-Cath surgery with flying colors. Did really well with the anesthesia albeit a little grumpy when she woke up. But waking up grumpy has always been par for the course so far.
Radiation Treatments
A clean spinal tap means that radiation treatments would only be targeted on the cerebellum and not the entire brain and spinal column. They would only zap it where the tumor was formerly located. This was definitely a good, good thing. Often when doctors irradiate the entire brain and spine, it causes more side effects than just treating in one spot.
Radiotherapy treatments would occur daily starting at 7:20 am, five days a week for six weeks. This was on top of our crazy therapy schedule that occurred in the afternoon at Texas Children's Hospital. We will be very busy. Our treatments meant that she would have to be sedated with general anesthesia every day. No food or drink is allowed after midnight; so she is not allowed to eat any breakfast or have milk before heading down to Methodist. Poor child.
Port, Port, Port
Like I said, Emma sailed through Port-a-Cath surgery with no problems on Monday, July 14th. Dr. Anna Brandt was the surgeon behind the "port" installation. The traditional place to put a "port" is generally on the chest above the breast. When I heard that, I was a little apprehensive about the placement. I mean, kids are so active--I didn't want her squashing her port. Dr. Brandt decided that the best place to put her Port-a-Cath was under her left breast. "I put them where her future bra will be," she said. "Helps to hide the scar. I consider prom dresses when I do these types of surgeries."
She got to put on a pair of blue pajamas instead of a hospital gown in preparation for the surgery. They also outfitted her with her very own bouffant-style, surgical hat that the doctors wear. She loved it--she looked like a little surgeon in blue scrubs. I swear we are grooming this kid for a medical career. Hopefully pediatric oncology.
Radiation Treatments
A clean spinal tap means that radiation treatments would only be targeted on the cerebellum and not the entire brain and spinal column. They would only zap it where the tumor was formerly located. This was definitely a good, good thing. Often when doctors irradiate the entire brain and spine, it causes more side effects than just treating in one spot.
Radiotherapy treatments would occur daily starting at 7:20 am, five days a week for six weeks. This was on top of our crazy therapy schedule that occurred in the afternoon at Texas Children's Hospital. We will be very busy. Our treatments meant that she would have to be sedated with general anesthesia every day. No food or drink is allowed after midnight; so she is not allowed to eat any breakfast or have milk before heading down to Methodist. Poor child.
Port, Port, Port
Like I said, Emma sailed through Port-a-Cath surgery with no problems on Monday, July 14th. Dr. Anna Brandt was the surgeon behind the "port" installation. The traditional place to put a "port" is generally on the chest above the breast. When I heard that, I was a little apprehensive about the placement. I mean, kids are so active--I didn't want her squashing her port. Dr. Brandt decided that the best place to put her Port-a-Cath was under her left breast. "I put them where her future bra will be," she said. "Helps to hide the scar. I consider prom dresses when I do these types of surgeries."
She got to put on a pair of blue pajamas instead of a hospital gown in preparation for the surgery. They also outfitted her with her very own bouffant-style, surgical hat that the doctors wear. She loved it--she looked like a little surgeon in blue scrubs. I swear we are grooming this kid for a medical career. Hopefully pediatric oncology.
Tuesday, July 22, 2008
The C-Word
Meetings with Oncologists
We had appointments on the 14th floor on Thursday afternoon July 10th. I stepped off the elevator and the sign at the end of the hall read "Cancer Center." That sucked. I hate that word. It's so much harder to hear it when it pertains to someone close to you.
Long story short, we spoke to our oncologist, Dr. Jack Su, about Emma's situation. Prognosis for Emma's situation is good. According to Dr. Su, there are two factors that determine outcome when battling brain cancer. The first is how good a surgeon you have and how much of the tumor he removed. The second is the therapy they do afterwards. We have a great prognosis starting out. Our "super surgeon," Dr. Jea managed to remove 99% of the tumor in neurosurgery. Yay. And apparently, we have one of the best Pediatric Neuro-Oncology teams in the number three kid's cancer hospital in the nation (ranked by US News and World Report). Double Yay.
In a few weeks, Emma was to start a radiation treatment plan at The Methodist Hosptial with Dr. Arnold Paulino at the helm. He is known as the "kid cancer" doctor at Methodist and (I believe) has basically pioneered the treatment of Ependymoma tumors with IMRT, a type of radiotherapy. (Remember I said chemotherapy won't work with this type of tumor? Actually, what they said was studies have shown that using chemo and radiation vs. just radiation had the same result. So they would just omit the chemo part in our case.) Her treatment plan will be every day, five days a week for six weeks. General anesthesia to be administered daily. Fun.
The next day we met with Dr. Paulino at Methodist. Peggy, the nurse, brought us to a room where we watched a little video that detailed what was involved in treatments. More fun. "The hardest part of my job," she said, "is when the kids tell me they don't want their treatment to end. For them it becomes a way of life, a comfort almost."
Emma would have to do something called "radiation simulation" before starting the actual treatments. Basically, they go through the motions of marking her so they know where to plot the "lasers" as I call them. They create a mask, or a mold of her head, so that she will be in the same position for every single treatment. The simulation requires her to be sedated; I won't lie--the sedation thing worried me.
Short term side effects of radiotherapy may include fatigue, loss of appetite, irritation of the skin in the areas being treated (think sunburn), loss of hair in the areas being treated (in Em's case, the back of the head and the tops of the ears), and nausea associated with anesthesia--though they do give a drug to counteract that. Long term studies show some kids may have their cognitive abilities affected; the rest I can't remember.
Minor Surgery Involved
We had a surgery scheduled for Monday to install a device called a "port," also known as a Port-a-Cath catheter. This is a device they would implant in her chest, under the skin, where they would be able to "access" her and administer medicines or draw blood without poking her in the arm a million times. The last thing I want is to put my child through the daily trauma of being poked with needles. It was bad enough pre-surgery.
The Port-a-Cath allows them to access/poke her chest one time weekly and attach a tube (think I.V. tubing). The tube stays in her chest for the entire week (mainly for administering anesthesia), and gets removed after her last radiation treatment on Fridays. The unfortunate part is you can't get the tubing wet for risk of infection. This means no bathing, swimming, or water parks. Bummer. Don't worry, they cover it with a gauze pad during the week so it's not that susceptible to germs.
During the surgery, they would also perform a lumbar puncture, or spinal tap, where they would extract her cerebrospinal fluid (CSF) and check to see if the tumor had "seeded." If there were "seeds" then this meant that the tumor had spread and they would have to irradiate her entire brain and spine--bad stuff. The oncologists were very certain that it had not spread based on the last post-operative MRI. I sound so medically professional, don't I? We were praying for good results from the surgery and spinal tap.
Baseline
So you know we were admitted into the hospital on a Wednesday when all this started, right? Surgery was planned that Friday, and we had a rest period on the day before which was Thursday. So why hadn't anyone thought to do this before hand?
Let me backtrack a minute...before radiotherapy starts, the doctors need to establish a baseline for the child's cognitive abilities. Remember I said radiation could mess with your cognition--not memory, just your learning? So they need to determine how smart you are to begin with. But why would they do it after surgery when you are so messed up? Makes no sense to me.
Friday morning had us at Texas Children's Hospital at 7:30 am for a "Learning Assessment Test" which measured Emma's language skills and I.Q. among other things. Mike was irritated by the fact that they would test her post-surgery when she was already fatigued and weakened control of motor functions and speech. Apparently, the answers to our question above was that the learning department needed more than just a days notice to perform the testing, and it was generally done after surgeries. Yeah, whatever. I hope they were ready for Emmy to amaze them.
They ran her through a battery of tasks for a three year old including spoken word recognition tests, building towers with blocks, simple line drawings, etc. They also ran us through a series of interviews as well as 300 question bubble-in Scantron-type tests (three of them to be exact) all regarding our observations and knowledge of Emma. She's so freakin' smart, really. I'm not being the biased parent either. Though she ended up fatiguing early on most of the tasks they had her do, she impressed them by reading the clock in the room and saying "its 10 o'clock daddy, I want chicken nuggets" (Ha ha.) Results would come in the mail in a few weeks.
We had appointments on the 14th floor on Thursday afternoon July 10th. I stepped off the elevator and the sign at the end of the hall read "Cancer Center." That sucked. I hate that word. It's so much harder to hear it when it pertains to someone close to you.
Long story short, we spoke to our oncologist, Dr. Jack Su, about Emma's situation. Prognosis for Emma's situation is good. According to Dr. Su, there are two factors that determine outcome when battling brain cancer. The first is how good a surgeon you have and how much of the tumor he removed. The second is the therapy they do afterwards. We have a great prognosis starting out. Our "super surgeon," Dr. Jea managed to remove 99% of the tumor in neurosurgery. Yay. And apparently, we have one of the best Pediatric Neuro-Oncology teams in the number three kid's cancer hospital in the nation (ranked by US News and World Report). Double Yay.
In a few weeks, Emma was to start a radiation treatment plan at The Methodist Hosptial with Dr. Arnold Paulino at the helm. He is known as the "kid cancer" doctor at Methodist and (I believe) has basically pioneered the treatment of Ependymoma tumors with IMRT, a type of radiotherapy. (Remember I said chemotherapy won't work with this type of tumor? Actually, what they said was studies have shown that using chemo and radiation vs. just radiation had the same result. So they would just omit the chemo part in our case.) Her treatment plan will be every day, five days a week for six weeks. General anesthesia to be administered daily. Fun.
The next day we met with Dr. Paulino at Methodist. Peggy, the nurse, brought us to a room where we watched a little video that detailed what was involved in treatments. More fun. "The hardest part of my job," she said, "is when the kids tell me they don't want their treatment to end. For them it becomes a way of life, a comfort almost."
Emma would have to do something called "radiation simulation" before starting the actual treatments. Basically, they go through the motions of marking her so they know where to plot the "lasers" as I call them. They create a mask, or a mold of her head, so that she will be in the same position for every single treatment. The simulation requires her to be sedated; I won't lie--the sedation thing worried me.
Short term side effects of radiotherapy may include fatigue, loss of appetite, irritation of the skin in the areas being treated (think sunburn), loss of hair in the areas being treated (in Em's case, the back of the head and the tops of the ears), and nausea associated with anesthesia--though they do give a drug to counteract that. Long term studies show some kids may have their cognitive abilities affected; the rest I can't remember.
Minor Surgery Involved
We had a surgery scheduled for Monday to install a device called a "port," also known as a Port-a-Cath catheter. This is a device they would implant in her chest, under the skin, where they would be able to "access" her and administer medicines or draw blood without poking her in the arm a million times. The last thing I want is to put my child through the daily trauma of being poked with needles. It was bad enough pre-surgery.
The Port-a-Cath allows them to access/poke her chest one time weekly and attach a tube (think I.V. tubing). The tube stays in her chest for the entire week (mainly for administering anesthesia), and gets removed after her last radiation treatment on Fridays. The unfortunate part is you can't get the tubing wet for risk of infection. This means no bathing, swimming, or water parks. Bummer. Don't worry, they cover it with a gauze pad during the week so it's not that susceptible to germs.
During the surgery, they would also perform a lumbar puncture, or spinal tap, where they would extract her cerebrospinal fluid (CSF) and check to see if the tumor had "seeded." If there were "seeds" then this meant that the tumor had spread and they would have to irradiate her entire brain and spine--bad stuff. The oncologists were very certain that it had not spread based on the last post-operative MRI. I sound so medically professional, don't I? We were praying for good results from the surgery and spinal tap.
Baseline
So you know we were admitted into the hospital on a Wednesday when all this started, right? Surgery was planned that Friday, and we had a rest period on the day before which was Thursday. So why hadn't anyone thought to do this before hand?
Let me backtrack a minute...before radiotherapy starts, the doctors need to establish a baseline for the child's cognitive abilities. Remember I said radiation could mess with your cognition--not memory, just your learning? So they need to determine how smart you are to begin with. But why would they do it after surgery when you are so messed up? Makes no sense to me.
Friday morning had us at Texas Children's Hospital at 7:30 am for a "Learning Assessment Test" which measured Emma's language skills and I.Q. among other things. Mike was irritated by the fact that they would test her post-surgery when she was already fatigued and weakened control of motor functions and speech. Apparently, the answers to our question above was that the learning department needed more than just a days notice to perform the testing, and it was generally done after surgeries. Yeah, whatever. I hope they were ready for Emmy to amaze them.
They ran her through a battery of tasks for a three year old including spoken word recognition tests, building towers with blocks, simple line drawings, etc. They also ran us through a series of interviews as well as 300 question bubble-in Scantron-type tests (three of them to be exact) all regarding our observations and knowledge of Emma. She's so freakin' smart, really. I'm not being the biased parent either. Though she ended up fatiguing early on most of the tasks they had her do, she impressed them by reading the clock in the room and saying "its 10 o'clock daddy, I want chicken nuggets" (Ha ha.) Results would come in the mail in a few weeks.
Weeks Gone By
It feels like forever. And there is such a long road ahead, too.
Sorry folks. I know you've all been wondering what in world has been going on with us. Thank you for your continued prayers and support. Emma is doing superb. We have been home for a little over two weeks now and the adjustment has been a little crazy.
Emotionally, we are positive but scared. We know she will get through this and get through it fine. Personally, I have my good days and my bad. Doing research makes me cry, and I'm not one of those emotional types. We are exhausted, I am anyway. Thank God Emma has enough energy for both of us.
Our schedule is very busy. We continue with our outpatient therapy appointments at Texas Children's Hospital four days a week. (I refer to everything in the first person if you haven't already noticed--I'm sure you understand.) This includes Physical, Occupational and Speech therapies. Emma is an amazing child. Her balance and coordination is improving daily as well as her speech. She has improved immensely in each area since leaving the hospital.
Sometimes Shy
Lately around people she is shy. Not the norm for her. Emma is hardly shy around people. She's as gregarious and outgoing as Mike. (If you know him, you know what that's like.) Performance anxiety on a ballet stage, maybe, but not one-on-one with people. Surgery has changed this. Around friends that know her really well, she is withdrawn and hides. It takes her much longer to warm up than usual. Mike and I feel like this is from embarrassment. Emma is a bit more self-aware than most kids her age and understands that she is not back to her usual self yet.
One day she climbed onto the step stool in front of the bathroom sink to brush her teeth. She hadn't seen herself in a mirror since she'd been in the hospital, so it was a bit of a shock to see what the tape did to her face. You could immediately see her face and shoulders droop out of disappointment. It was sad. Plastic tape used on her face in surgery caused sores on her skin. Now that they have healed, they look like pink spots under her eyes. "You're turning into a ladybug," I said. That made her smile a little.
I get by praying that tomorrow will be a better day.
Sorry folks. I know you've all been wondering what in world has been going on with us. Thank you for your continued prayers and support. Emma is doing superb. We have been home for a little over two weeks now and the adjustment has been a little crazy.
Emotionally, we are positive but scared. We know she will get through this and get through it fine. Personally, I have my good days and my bad. Doing research makes me cry, and I'm not one of those emotional types. We are exhausted, I am anyway. Thank God Emma has enough energy for both of us.
Our schedule is very busy. We continue with our outpatient therapy appointments at Texas Children's Hospital four days a week. (I refer to everything in the first person if you haven't already noticed--I'm sure you understand.) This includes Physical, Occupational and Speech therapies. Emma is an amazing child. Her balance and coordination is improving daily as well as her speech. She has improved immensely in each area since leaving the hospital.
Sometimes Shy
Lately around people she is shy. Not the norm for her. Emma is hardly shy around people. She's as gregarious and outgoing as Mike. (If you know him, you know what that's like.) Performance anxiety on a ballet stage, maybe, but not one-on-one with people. Surgery has changed this. Around friends that know her really well, she is withdrawn and hides. It takes her much longer to warm up than usual. Mike and I feel like this is from embarrassment. Emma is a bit more self-aware than most kids her age and understands that she is not back to her usual self yet.
One day she climbed onto the step stool in front of the bathroom sink to brush her teeth. She hadn't seen herself in a mirror since she'd been in the hospital, so it was a bit of a shock to see what the tape did to her face. You could immediately see her face and shoulders droop out of disappointment. It was sad. Plastic tape used on her face in surgery caused sores on her skin. Now that they have healed, they look like pink spots under her eyes. "You're turning into a ladybug," I said. That made her smile a little.
I get by praying that tomorrow will be a better day.
Thursday, July 10, 2008
Homecoming
The doctors wanted to discharge Emmy just seven days after her surgery. Crazy, right? Well, Mike and I felt a little weird about it, but as the days neared, we decided it was the right thing to do. But we stayed an extra night just in case. Dr. Jea wanted her back in her own environment to heal. I agreed.
We were discharged on Saturday morning, July 5th, and were unloading the room. Physical therapy had been by only for a few minutes, so Emmy had some energy and was in fact bored and a little bummed out. This feeling of being sad was not uncommon. Emma is a pretty smart kid, so she knows that she is not herself lately. This makes her really frustrated and emotional. Poor thing. I decided to walk her over to the toy room and return a few things to the Child Life department; get her moving a bit.
Child Life Specialists have a tough job. They are like counselors/psychiatrists for the children and families going through this experience. Its their job to help kids understand what is happening to them and help families cope. How do you tell a child they have cancer? That's hard.
Alison was awesome with Emmy. She would bring toys to help her feel better, bring us books that talked about cancer, etc. The best part was that she was there for Emmy in surgery. She walked her down to the prep area and brought some toys to keep her mind off of the scary stuff. Emma was not afraid going into surgery because "Ms. Alison was playing" there with her.
On the way back from the Child Life toy room, Emmy spied a Go Diego Go Jeep and decided to ride it back to the room. Its the old-school type with an open floorboard, so you have to push "Flintstones-style" with your feet. She was chasing her big sister Maysie around through the halls in the jeep.
I swear, I hadn't seen her so lively since before the surgery. She was smiling a real smile! Only half of her face worked, and that smile was so beautifully crooked. I cried so hard, I had to walk away from her. She rode that jeep all the way down to the parking garage, smiling the whole way.
Maysie took a photo of Em in the jeep. I'll have her post it when she gets a chance.
Lots of Hard Work
I have to talk about what I told Emmy before I forget. She doesn't know what a brain tumor is. How do you explain that to a 3 1/2 year old kid? As smart as she is, I didn't want to get into too much detail.
"Do you know why we're here honey?" I had asked her a few days after the surgery. No, she says. "Well, we're in the hospital so that the doctors can help fix your headaches. They made your head stop hurting, right? That's why everyone is here to help you. They are here to help you walk when you're wobbly, and to help you talk better, and to make sure you are healthy again." She nodded her head in understanding.
I tell her, "I want you to know that there is a lot of hard work ahead of us to get you better again. Sometimes you will get frustrated, or sad, or mad, but you have to try really, really hard, OK? Be my big, strong, brave girl." I still tell her this daily.
Home at Last
We got home late afternoon that day, and her mood was close to ecstatic. She pointed out the "chicken nugget store" a.k.a. Wendy's on the way there. We were finally home. Now all we needed was Hannah, and we'd be complete.
Hannah is almost 20 months old. They are super close and loving but as different as can be. Emma is sweet and mellow. Hannah is like a "lovely tornado." And she totally missed Emmy. She was staying at my Grandma's and Mom's house for the whole time, and constantly shouting out "Memma," her nickname for Emmy. When we were home, finally all together again, it felt like the bad dream was over and we were safe. Sort of.
Hannah gave Emma a big hug and the two of them started laughing and playing. Hadn't heard a laugh from Emma in a long time. A real laugh. It made Mike cry. It was good to be home.
We were discharged on Saturday morning, July 5th, and were unloading the room. Physical therapy had been by only for a few minutes, so Emmy had some energy and was in fact bored and a little bummed out. This feeling of being sad was not uncommon. Emma is a pretty smart kid, so she knows that she is not herself lately. This makes her really frustrated and emotional. Poor thing. I decided to walk her over to the toy room and return a few things to the Child Life department; get her moving a bit.
Child Life Specialists have a tough job. They are like counselors/psychiatrists for the children and families going through this experience. Its their job to help kids understand what is happening to them and help families cope. How do you tell a child they have cancer? That's hard.
Alison was awesome with Emmy. She would bring toys to help her feel better, bring us books that talked about cancer, etc. The best part was that she was there for Emmy in surgery. She walked her down to the prep area and brought some toys to keep her mind off of the scary stuff. Emma was not afraid going into surgery because "Ms. Alison was playing" there with her.
On the way back from the Child Life toy room, Emmy spied a Go Diego Go Jeep and decided to ride it back to the room. Its the old-school type with an open floorboard, so you have to push "Flintstones-style" with your feet. She was chasing her big sister Maysie around through the halls in the jeep.
I swear, I hadn't seen her so lively since before the surgery. She was smiling a real smile! Only half of her face worked, and that smile was so beautifully crooked. I cried so hard, I had to walk away from her. She rode that jeep all the way down to the parking garage, smiling the whole way.
Maysie took a photo of Em in the jeep. I'll have her post it when she gets a chance.
Lots of Hard Work
I have to talk about what I told Emmy before I forget. She doesn't know what a brain tumor is. How do you explain that to a 3 1/2 year old kid? As smart as she is, I didn't want to get into too much detail.
"Do you know why we're here honey?" I had asked her a few days after the surgery. No, she says. "Well, we're in the hospital so that the doctors can help fix your headaches. They made your head stop hurting, right? That's why everyone is here to help you. They are here to help you walk when you're wobbly, and to help you talk better, and to make sure you are healthy again." She nodded her head in understanding.
I tell her, "I want you to know that there is a lot of hard work ahead of us to get you better again. Sometimes you will get frustrated, or sad, or mad, but you have to try really, really hard, OK? Be my big, strong, brave girl." I still tell her this daily.
Home at Last
We got home late afternoon that day, and her mood was close to ecstatic. She pointed out the "chicken nugget store" a.k.a. Wendy's on the way there. We were finally home. Now all we needed was Hannah, and we'd be complete.
Hannah is almost 20 months old. They are super close and loving but as different as can be. Emma is sweet and mellow. Hannah is like a "lovely tornado." And she totally missed Emmy. She was staying at my Grandma's and Mom's house for the whole time, and constantly shouting out "Memma," her nickname for Emmy. When we were home, finally all together again, it felt like the bad dream was over and we were safe. Sort of.
Hannah gave Emma a big hug and the two of them started laughing and playing. Hadn't heard a laugh from Emma in a long time. A real laugh. It made Mike cry. It was good to be home.
4th of July
We couldn't see the fireworks from our room on the 10th floor. Well, that's what Mike said anyway (I was home cleaning for our arrival). Plus Emma was asleep when it started anyhow. A long day of therapy and general hospital activity socked her out. That's ok. I had planned on dressing her and Hannah up and have them ride in the neigborhood 4th of July parade with Megan. But that's ok. Next year will be better.
Speaking of Megan, she came to visit with Kari. Megan is Kari's five-year-old; you will never meet such an effervescent personality. (Her new nickname is "Sparkles.") My friend Kari is an wonderful person. With her camera always in tow, (she is an awesome photographer) she shot these awesome images of Emma before we left the hospital. It was the first time I saw some semblance of a smile since the surgery. Thanks Kari.
All photographs copyright Kari Noser Photography. Please do not use or reproduce without consent of Kari Noser. Please visit Kari's Flickr page to see more of her awesome work.
Speaking of Megan, she came to visit with Kari. Megan is Kari's five-year-old; you will never meet such an effervescent personality. (Her new nickname is "Sparkles.") My friend Kari is an wonderful person. With her camera always in tow, (she is an awesome photographer) she shot these awesome images of Emma before we left the hospital. It was the first time I saw some semblance of a smile since the surgery. Thanks Kari.
To view these on Kari's Flickr Page, click here.
One of Megs and Emmy on Easter 2008. That was a better day.
All photographs copyright Kari Noser Photography. Please do not use or reproduce without consent of Kari Noser. Please visit Kari's Flickr page to see more of her awesome work.
Tuesday, July 8, 2008
The Following Week
Two days in ICU and she was well enough to move into a regular room on the 10th floor. She is such a trooper that kid.
They took a post-operative CT scan on Monday and it looked great. I forgot to mention they also took an MRI the day after surgery and that was perfect as well. There were no signs of the tumor in the MRI meaning Dr. Jea rocked and took out all of it. But we all knew there was that 1% that needed to be treated. So we were in good spirits.
Our room on the 10th floor was busy for the rest of the week. Nurses, doctors, respiratory therapists, phlebotomists, speech therapists, physical therapists, occupational therapists, dietitians, Child Life specialists, Radio Lollipop, Junior Volunteers, priests, family, friends, delivery guys, you name it. Six days went by fast.
Friends and Family
I must say we have a pretty awesome group of people backing us up. Our families have been amazing and weathered the storm with us daily. I wish I could name and thank all of the friends that came up to see us in the 10 days we were there, but honestly, it was such a blur. So many things going on at once. But I will say that each of your visits really brightened our day at such a hard time. I can't thank you enough for your love and support and the laughs. The laughs got us through this. Oh, and the food--very important. Thanks.
Motor Skills
The days after coming out of the ICU saw a marked change in her motor skills. Our anesthesiologist told us that we should think of the brain as being "in shock" or "numb" after surgery. The ability is still there, just slow/impaired and will take time for the brain to get back to normal. Emma required rehabilitation and therapies to get her back into shape. The main thing is, she was always tired.
Her eyes were functioning normally. Albeit a little crooked, Emma could follow you and hold focus if you engaged her. And she was able to watch TV. I know she was happy about that for sure!
Walking is a little tough. She had issues with balance still, but the strength was still there. Our Physical Therapist, Stephanie, is awesome. Super positive and energetic. Emmy lights up when she sees her. PT works with Em to do big things like walking, squatting, balancing, etc. Occupation Therapy, Andrea, works with fine motor skills, like holding a paintbrush, playing board games, things you do with your hands, etc.
I think the speech thing is what effects her the most. I really see her struggle; she gets frustrated and starts to cry when the words don't come out right. For any 3 1/2 year old not being able to talk is a big deal--Emma is no different. A few days after surgery the speech became really bad. It was frightening. Our Speech Therapist, Hazel told us that the brain swells a little a few days after surgery, so the speech is effected. Emma sounded like a baby learning to talk. The words were really just whines with syllables. I think it was embarrassing for her, so she decided just not to speak much at all. But Hazel is a wonderful speech therapist (with an English accent, no less) and is bringing the words out daily. My Dad and I think it would be so cool if Emmy got a little English accent. How funny would that be?
The Type of Tumor
We found out on Thursday afternoon that the pathology report came back. It was a "low-grade Ependymoma." Ugh. Not the news we wanted to hear, but nonetheless, we were ready to deal with it. Ependymoma is a malignant tumor, so it needs to be treated with radiation. Chemotherapy won't work. We still don't know much about the the details of the radiation treatments. We meet with Neuro-Oncology doctors on Thursday 7/10 and will find out more.
We were told that her expected prognosis is really, really good. Also that the radiation can be targeted so that it won't effect her cognitive abilities or growth. The thing that bothers me is that she will have to be sedated daily to get treatments. Yuck. They told us that "the only way to beat this thing is to fight it," and I know Emma can do it. There is no other option.
I still have issues with calling it "cancer" though. "My daughter has brain cancer." That just doesn't sound right to me. Too hard to say. So I'll just say "she had a brain tumor removed" for now. That feels a little better at least.
They took a post-operative CT scan on Monday and it looked great. I forgot to mention they also took an MRI the day after surgery and that was perfect as well. There were no signs of the tumor in the MRI meaning Dr. Jea rocked and took out all of it. But we all knew there was that 1% that needed to be treated. So we were in good spirits.
Our room on the 10th floor was busy for the rest of the week. Nurses, doctors, respiratory therapists, phlebotomists, speech therapists, physical therapists, occupational therapists, dietitians, Child Life specialists, Radio Lollipop, Junior Volunteers, priests, family, friends, delivery guys, you name it. Six days went by fast.
Friends and Family
I must say we have a pretty awesome group of people backing us up. Our families have been amazing and weathered the storm with us daily. I wish I could name and thank all of the friends that came up to see us in the 10 days we were there, but honestly, it was such a blur. So many things going on at once. But I will say that each of your visits really brightened our day at such a hard time. I can't thank you enough for your love and support and the laughs. The laughs got us through this. Oh, and the food--very important. Thanks.
Motor Skills
The days after coming out of the ICU saw a marked change in her motor skills. Our anesthesiologist told us that we should think of the brain as being "in shock" or "numb" after surgery. The ability is still there, just slow/impaired and will take time for the brain to get back to normal. Emma required rehabilitation and therapies to get her back into shape. The main thing is, she was always tired.
Her eyes were functioning normally. Albeit a little crooked, Emma could follow you and hold focus if you engaged her. And she was able to watch TV. I know she was happy about that for sure!
Walking is a little tough. She had issues with balance still, but the strength was still there. Our Physical Therapist, Stephanie, is awesome. Super positive and energetic. Emmy lights up when she sees her. PT works with Em to do big things like walking, squatting, balancing, etc. Occupation Therapy, Andrea, works with fine motor skills, like holding a paintbrush, playing board games, things you do with your hands, etc.
I think the speech thing is what effects her the most. I really see her struggle; she gets frustrated and starts to cry when the words don't come out right. For any 3 1/2 year old not being able to talk is a big deal--Emma is no different. A few days after surgery the speech became really bad. It was frightening. Our Speech Therapist, Hazel told us that the brain swells a little a few days after surgery, so the speech is effected. Emma sounded like a baby learning to talk. The words were really just whines with syllables. I think it was embarrassing for her, so she decided just not to speak much at all. But Hazel is a wonderful speech therapist (with an English accent, no less) and is bringing the words out daily. My Dad and I think it would be so cool if Emmy got a little English accent. How funny would that be?
The Type of Tumor
We found out on Thursday afternoon that the pathology report came back. It was a "low-grade Ependymoma." Ugh. Not the news we wanted to hear, but nonetheless, we were ready to deal with it. Ependymoma is a malignant tumor, so it needs to be treated with radiation. Chemotherapy won't work. We still don't know much about the the details of the radiation treatments. We meet with Neuro-Oncology doctors on Thursday 7/10 and will find out more.
We were told that her expected prognosis is really, really good. Also that the radiation can be targeted so that it won't effect her cognitive abilities or growth. The thing that bothers me is that she will have to be sedated daily to get treatments. Yuck. They told us that "the only way to beat this thing is to fight it," and I know Emma can do it. There is no other option.
I still have issues with calling it "cancer" though. "My daughter has brain cancer." That just doesn't sound right to me. Too hard to say. So I'll just say "she had a brain tumor removed" for now. That feels a little better at least.
Recovery
I'll get back to the story and finish where I left off...but I will spare you with the boring details (Yay!), or so I hope.
After talking with Dr. Jea, we were brought to the Pediatric ICU room where they took her to recover. It's so scary to see someone who just came out of surgery. I.V. fluids made her puffy all over. She had on an oxygen mask and this plastic thing in her mouth that kept her from biting her tongue. The tape they used to keep her eyes shut and stick on electrodes during the procedure gave her an allergic reaction. So it was a little disconcerting to see that she had open wounds and blisters on her face from the tape. Plus the fact that she was totally and completely sedated and wouldn't open her eyes didn't help either. She was under for so long that she didn't even flutter an eyelash when I spoke to her and told her I was with her now. Scary. But they told me she was responsive and the sedation would wear off in a few hours. From there we would see what temporary damage the surgery had done to her motor skills--none we hoped.
Mike stayed by her side all night long; in a chair with blankets and pillows to keep him comfortable. Maysie (my stepdaughter) and I retired to a room on the 4th floor at the Ronald McDonald House.
This is such a cool organization. Ronald McDonald house has a wing at Texas Children's Hospital for the families of patients who are in the ICU. The rooms are first come, first served on a waiting list. You can only check in at 6 pm and must leave by 11 am the next morning. The rooms are tiny, but the bed is comfortable. If you're lucky to get a room, you might actually get some rest and a shower. We were fortunate that a room was given to us that night; but on less fortunate circumstances. Mike met a woman whose son had been in ICU for seven weeks. Countless surgeries later, she stays by his bedside nightly. We pray for them too.
I couldn't get to sleep that night. It was 2:30am by the time Maysie and I finished talking and she went to bed. I was too wound up to lay down. We had to evacuate our room on the 10th floor after Emma was taken to surgery, so everything in the room was in disarray. Family and friends had moved all luggage, get-well gifts, balloons, stuffed animals, etc. to the room at Ronald McDonald house. I organized everything. It was the only way I could create a sense of control in a world I couldn't control.
I think I may have slept for 3 hours; weird dreams that I couldn't remember, too. Before even getting out of bed, I called the ICU and spoke to the nurse. "She's doing great," she said. Apparently, Emmy could talk. She had asked for "ice cold water," (a famous Emmy saying), and felt the bandages on her head. "What IS this thing," she asked. She was able to move her arms and legs. "I couldn't keep the blankets on her," Nurse Megan said. I was so overjoyed.
When I got there, she still had not opened her eyes. With assistance, Nurse Megan opened her eyelids and showed us that her eyeballs were rolled back. With effort, she could bring them down to see us. This was a temporary thing and her eyes would get better soon.
The next day, Mike said he awoke about 4am to find her on her stomach, angry. Her legs had gotten caught in the bed rail as she tried to escape the hospital bed unsuccessfully. "I want to put my shoes on and water the plants," she said clearly, an activity she and Mike shared regularly. She had also asked to go to Starbucks to get some Pumpkin Loaf, her favorite. How funny. I was so impressed--asking for Starbucks right out of surgery. She is her father's daughter that's for sure. We were on our way to a good recovery, no doubt.
After talking with Dr. Jea, we were brought to the Pediatric ICU room where they took her to recover. It's so scary to see someone who just came out of surgery. I.V. fluids made her puffy all over. She had on an oxygen mask and this plastic thing in her mouth that kept her from biting her tongue. The tape they used to keep her eyes shut and stick on electrodes during the procedure gave her an allergic reaction. So it was a little disconcerting to see that she had open wounds and blisters on her face from the tape. Plus the fact that she was totally and completely sedated and wouldn't open her eyes didn't help either. She was under for so long that she didn't even flutter an eyelash when I spoke to her and told her I was with her now. Scary. But they told me she was responsive and the sedation would wear off in a few hours. From there we would see what temporary damage the surgery had done to her motor skills--none we hoped.
Mike stayed by her side all night long; in a chair with blankets and pillows to keep him comfortable. Maysie (my stepdaughter) and I retired to a room on the 4th floor at the Ronald McDonald House.
This is such a cool organization. Ronald McDonald house has a wing at Texas Children's Hospital for the families of patients who are in the ICU. The rooms are first come, first served on a waiting list. You can only check in at 6 pm and must leave by 11 am the next morning. The rooms are tiny, but the bed is comfortable. If you're lucky to get a room, you might actually get some rest and a shower. We were fortunate that a room was given to us that night; but on less fortunate circumstances. Mike met a woman whose son had been in ICU for seven weeks. Countless surgeries later, she stays by his bedside nightly. We pray for them too.
I couldn't get to sleep that night. It was 2:30am by the time Maysie and I finished talking and she went to bed. I was too wound up to lay down. We had to evacuate our room on the 10th floor after Emma was taken to surgery, so everything in the room was in disarray. Family and friends had moved all luggage, get-well gifts, balloons, stuffed animals, etc. to the room at Ronald McDonald house. I organized everything. It was the only way I could create a sense of control in a world I couldn't control.
I think I may have slept for 3 hours; weird dreams that I couldn't remember, too. Before even getting out of bed, I called the ICU and spoke to the nurse. "She's doing great," she said. Apparently, Emmy could talk. She had asked for "ice cold water," (a famous Emmy saying), and felt the bandages on her head. "What IS this thing," she asked. She was able to move her arms and legs. "I couldn't keep the blankets on her," Nurse Megan said. I was so overjoyed.
When I got there, she still had not opened her eyes. With assistance, Nurse Megan opened her eyelids and showed us that her eyeballs were rolled back. With effort, she could bring them down to see us. This was a temporary thing and her eyes would get better soon.
The next day, Mike said he awoke about 4am to find her on her stomach, angry. Her legs had gotten caught in the bed rail as she tried to escape the hospital bed unsuccessfully. "I want to put my shoes on and water the plants," she said clearly, an activity she and Mike shared regularly. She had also asked to go to Starbucks to get some Pumpkin Loaf, her favorite. How funny. I was so impressed--asking for Starbucks right out of surgery. She is her father's daughter that's for sure. We were on our way to a good recovery, no doubt.
So Where Was I?
Sorry, time flies by so quickly these days. Thanks to everyone for the wonderful blog comments, emails and the awesome outpouring of love and support. I see that there are a lot of people out there wanting to help in any way. We so appreciate it! But please don't go out of your way...I know everyone is busy and we all have our own lives and families. All I ask for is prayer. I originally sent out emails to inform family and friends, but it has gotten bigger than I had expected. Thank you. The purpose of my writing is theraputic, to update friends and family, and to help anyone out there that might be going through this too. I hope that our situation makes you really stop to smell the roses and helps you to realize how important family is.
Saturday, July 5, 2008
Surgery Days
I say "surgery days" because it felt like days, years even. Never ending. There are really no words to describe the way it feels waiting for your child to come out of surgery. Especially one that takes six to eight hours. Wow.
The day after diagnosis (see previous post) was a harrowing one. Mike made every effort to "wrap his arms" around the whole idea of Emma having a tumor, and the surgery, and the future implications. His way of dealing with it is to go fact-finding and talk about it a lot. He sounded like a doctor; he would've made a good one too.
As for me, I pretty much shut down emotionally. There was no crying. Shock yes, crying, not really. The moments after we saw the CT scan and found out about the tumor, we went outside to talk. Mike was broken apart and emotional, his eyes full of tears. I couldn't find the energy to cry, though I wanted to. I decided to stay strong for Emma. My Mom was already a wreck, Mike was about there. I figured Emmy needed to see someone looking somewhat normal and strong. After all, she is way too smart for her age and would figure it out somehow. "I'm not going to cry now," I said. "I'll cry later."
Thursday, the day before the surgery she rested. The staff at Texas Children's Hospital is extraordinary. Their reaction time after finding out about the tumor was so quick. A few hours after the MRI, we already had a game plan in place and were sent to a room on the 10th floor. Emma was hooked up to monitor her breathing, respiratory and heart rates. She was also given a steroid by IV to reduce the swelling in the brain. She hated being confined to a bed.
We were so overwhelmed and grateful of all of the support from friends and family that we have and continue to receive. There were a dozen prayer groups started across the country from people we didn't even know for our sweet girl. We had countless visitors in our room and in the surgery waiting room the next day. I think people visiting Emma really cheered her up, and I wanted her to be hopeful and strong on her way to surgery prep. And she was.
I do have to say that I did cry on surgery day. In fact, I lost it. But I never let her see me like that, so it was OK. I was just so scared going into surgery. I feared the complications and what she would be like afterward. Mainly I feared losing her. But we didn't. Thank you God.
Friends and family joined us on Friday morning in the Surgery Waiting Room on the 3rd floor. They took her out of her room to prep her for surgery about 11:30am and we didn't see her again until after 10:30pm. Every hour we received a phone call with updates from the operating room. Everything went fine.
Our neurosurgeon Dr. Andrew Jea walked into the waiting room around 10:30pm and brought us to a private area to discuss the outcome of surgery. After more than nine hours of surgery, he didn't seem tired at all. Amazing. Could you imagine standing there for hours, looking through a microscope doing fine, detailed work and the pressure of holding a life in your hands? Like I said, hero.
"Surgery went well, but it was very difficult," he said. He removed 99% of the tumor; only leaving a very thin "carpet" that was attached to the brain stem. Apparently, you never want to mess with the brain stem, too sensitive. Initial pathology reports say that the tumor could be one of two things: a benign "juvenile pilocytic astrocytomas" (JPA), or a malignant "ependymoma". We prayed for the benign one. It would take up to seven days to find out.
The day after diagnosis (see previous post) was a harrowing one. Mike made every effort to "wrap his arms" around the whole idea of Emma having a tumor, and the surgery, and the future implications. His way of dealing with it is to go fact-finding and talk about it a lot. He sounded like a doctor; he would've made a good one too.
As for me, I pretty much shut down emotionally. There was no crying. Shock yes, crying, not really. The moments after we saw the CT scan and found out about the tumor, we went outside to talk. Mike was broken apart and emotional, his eyes full of tears. I couldn't find the energy to cry, though I wanted to. I decided to stay strong for Emma. My Mom was already a wreck, Mike was about there. I figured Emmy needed to see someone looking somewhat normal and strong. After all, she is way too smart for her age and would figure it out somehow. "I'm not going to cry now," I said. "I'll cry later."
Thursday, the day before the surgery she rested. The staff at Texas Children's Hospital is extraordinary. Their reaction time after finding out about the tumor was so quick. A few hours after the MRI, we already had a game plan in place and were sent to a room on the 10th floor. Emma was hooked up to monitor her breathing, respiratory and heart rates. She was also given a steroid by IV to reduce the swelling in the brain. She hated being confined to a bed.
We were so overwhelmed and grateful of all of the support from friends and family that we have and continue to receive. There were a dozen prayer groups started across the country from people we didn't even know for our sweet girl. We had countless visitors in our room and in the surgery waiting room the next day. I think people visiting Emma really cheered her up, and I wanted her to be hopeful and strong on her way to surgery prep. And she was.
I do have to say that I did cry on surgery day. In fact, I lost it. But I never let her see me like that, so it was OK. I was just so scared going into surgery. I feared the complications and what she would be like afterward. Mainly I feared losing her. But we didn't. Thank you God.
Friends and family joined us on Friday morning in the Surgery Waiting Room on the 3rd floor. They took her out of her room to prep her for surgery about 11:30am and we didn't see her again until after 10:30pm. Every hour we received a phone call with updates from the operating room. Everything went fine.
Our neurosurgeon Dr. Andrew Jea walked into the waiting room around 10:30pm and brought us to a private area to discuss the outcome of surgery. After more than nine hours of surgery, he didn't seem tired at all. Amazing. Could you imagine standing there for hours, looking through a microscope doing fine, detailed work and the pressure of holding a life in your hands? Like I said, hero.
"Surgery went well, but it was very difficult," he said. He removed 99% of the tumor; only leaving a very thin "carpet" that was attached to the brain stem. Apparently, you never want to mess with the brain stem, too sensitive. Initial pathology reports say that the tumor could be one of two things: a benign "juvenile pilocytic astrocytomas" (JPA), or a malignant "ependymoma". We prayed for the benign one. It would take up to seven days to find out.
Thursday, July 3, 2008
The Beginning
Long story short, we found out that Emma had a brain tumor. It was removed on Friday, June 27th, in a surgery that lasted more than 9 hours. She is now recovering at Texas Children's Hospital in Houston. Here are the details from the beginning...
Symptoms
"Mommy, my head hurts." These words were spoken to me for two weeks before I really did anything about it. Bad Mommy. What do you say to a three year old when they tell you that? How do you know what your toddler really means? I never thought it could be a brain tumor. I would say to her "take a nap, eat more lunch, drink some water." But in the back of my mind, I couldn't help but think that maybe it wasn't imagined. Maybe she had real pain. There were no fevers, no obvious ear infections, nothing. Just the headaches. Tylenol only helped for a little while.
But what I did notice was her balance. Emmy is a ballerina. She's been taking dance class for a year now. And loves to twirl and spin around wearing tutus and princess tiaras. So it was weird to see her off balance. She would be simply walking across the living room floor and just fall down. It became a common occurrence and started to bother me.
On Sunday, June 15th, she was complaining of her head hurting. 15 minutes after she uttered "my head hurts Mommy," she vomited. OK, weird. Red flag. I took her to see her pediatrician the next morning.
I love my pediatrician--Dr. Sari Miettinen with Texas Children's Pediatrics in the Heights. I told her of the headaches and the vomiting. We decided to watch and see, citing that it could be child migraines, or an inner ear infection. If the headaches woke her up from sleep or if the vomiting became more frequent, I should call her. Then I brought up the balance issue. "Really?" she said. This could mean pressure in the head for various reasons and we would need to do an MRI to see what the deal was.
Seeing as to how I am a hypochondriac myself, I thought I would ask Mike for a second opinion on her imbalance. He conferred that her balance was really off, and we decided to wait and see.
For the remainder of the week, the headaches and imbalance progressed. It was exactly one week later on Sunday that she was sleeping over at Grandma's and vomited. Mom said that her imbalance was disturbing. She was sitting in the tub during bath time, and just fell over.
The vomiting continued the next day, and I was unable to get an appointment at the pediatrician's until Tuesday. Tuesday morning I brought her in and explained to the doctor that her balance had progressively gotten worse and that she seemed "drunk." Let's put it this way, if it was a sobriety test, she totally would've gone to jail. A brain MRI was scheduled for the next day at Texas Children's Hospital.
Diagnosis
We arrived at the hospital Wednesday, June 25th at noon ready for a simple MRI procedure. While the nurse practitioner was taking her medical history, she vomited. Twice in one day. But this time, her speech was starting to decline too. There was a stir amongst the doctors. A "simple" MRI meant there would be no intubation (breathing tube) involved. The fact that she was vomiting made her a high risk case and there was chance that she could vomit while anesthetized--not a good deal. So there was talk of moving her to a different tower, scheduling changes, intubation, etc. Finally someone decided to do a CT scan at the emergency room and we were sent to the first floor.
CT scans are quick and easy. Most of the time they don't require sedation and take about 10-15 minutes to complete. They give you a quick diagnosis of what is wrong with you. MRI's are very in depth and take longer to complete; about two hours in our case. For children, intravenous sedation is usually required. (Someone please correct me if I'm wrong.)
So the CT took about ten minutes to complete. I'm standing in the room with my Mom and Mike, and Emmy is in the tube getting scanned. The minute the machine stopped moving I turn my head to look through the glass partition that the doctors sat behind. In that instant, they looked up from their computers. Their expressions said everything.
We were brought back to our ER room and the attending physician shut the door behind him. He asked me if we knew what our pediatrician thought the cause of the headaches might be. I couldn't remember. The only thing I could think of was that she said it could be a mass. I said the words "a mass" three times before the other two options came to mind. "Good," he says. "Let's go talk about 'the mass.'"
A Tumor by Any Other Name
Apparently tumors have many names; but really, a tumor is a tumor, right? Posterior Fossa Tumor: that's what they called it at first. Just a name to describe a mass in the back of your head. We had an MRI and suddenly, our tumor was called a "cerebellar tumor." It would have to be removed in surgery to get a final diagnosis and another name.
The cerebellum is the part of the brain located in the back of the head near the base of the spine. It controls motor skills, speech, eye movement, facial expressions (smiling), among other things. Loss of control of these skills were just one of the many risks associated with the surgery.
We met our neurosurgeon, Dr. Andrew Jea a few hours after the MRI in the back of the Imaging recovery room. I just can't say enough good things about Dr. Jea. He's my hero. He is Dr. McDreamy, Asian style. So awesome. I've never met such a compassionate individual. He really cares about his patients and calls Emmy one of his own.
Dr. Jea went over the MRI in detail, informing us that the tumor measured 4x5x3 centimeters. That was big. Really big for a three year old. About the size of a lemon, though Mike insists its the size of a baseball. (I don't play baseball.) He would make an incision from the nape of her neck to the middle of the back of her head and cut out a small square window in her skull to take it out. The surgery was to last from six to eight hours.
Surreal. When I was told it was a "mass" and they presented us the brain scan images, I was just shocked. I really, truly felt like I was watching an episode of Grey's Anatomy; like this was not my life. Like this was not really happening to her. I still feel that way today, days later. She is just too young.
Symptoms
"Mommy, my head hurts." These words were spoken to me for two weeks before I really did anything about it. Bad Mommy. What do you say to a three year old when they tell you that? How do you know what your toddler really means? I never thought it could be a brain tumor. I would say to her "take a nap, eat more lunch, drink some water." But in the back of my mind, I couldn't help but think that maybe it wasn't imagined. Maybe she had real pain. There were no fevers, no obvious ear infections, nothing. Just the headaches. Tylenol only helped for a little while.
But what I did notice was her balance. Emmy is a ballerina. She's been taking dance class for a year now. And loves to twirl and spin around wearing tutus and princess tiaras. So it was weird to see her off balance. She would be simply walking across the living room floor and just fall down. It became a common occurrence and started to bother me.
On Sunday, June 15th, she was complaining of her head hurting. 15 minutes after she uttered "my head hurts Mommy," she vomited. OK, weird. Red flag. I took her to see her pediatrician the next morning.
I love my pediatrician--Dr. Sari Miettinen with Texas Children's Pediatrics in the Heights. I told her of the headaches and the vomiting. We decided to watch and see, citing that it could be child migraines, or an inner ear infection. If the headaches woke her up from sleep or if the vomiting became more frequent, I should call her. Then I brought up the balance issue. "Really?" she said. This could mean pressure in the head for various reasons and we would need to do an MRI to see what the deal was.
Seeing as to how I am a hypochondriac myself, I thought I would ask Mike for a second opinion on her imbalance. He conferred that her balance was really off, and we decided to wait and see.
For the remainder of the week, the headaches and imbalance progressed. It was exactly one week later on Sunday that she was sleeping over at Grandma's and vomited. Mom said that her imbalance was disturbing. She was sitting in the tub during bath time, and just fell over.
The vomiting continued the next day, and I was unable to get an appointment at the pediatrician's until Tuesday. Tuesday morning I brought her in and explained to the doctor that her balance had progressively gotten worse and that she seemed "drunk." Let's put it this way, if it was a sobriety test, she totally would've gone to jail. A brain MRI was scheduled for the next day at Texas Children's Hospital.
Diagnosis
We arrived at the hospital Wednesday, June 25th at noon ready for a simple MRI procedure. While the nurse practitioner was taking her medical history, she vomited. Twice in one day. But this time, her speech was starting to decline too. There was a stir amongst the doctors. A "simple" MRI meant there would be no intubation (breathing tube) involved. The fact that she was vomiting made her a high risk case and there was chance that she could vomit while anesthetized--not a good deal. So there was talk of moving her to a different tower, scheduling changes, intubation, etc. Finally someone decided to do a CT scan at the emergency room and we were sent to the first floor.
CT scans are quick and easy. Most of the time they don't require sedation and take about 10-15 minutes to complete. They give you a quick diagnosis of what is wrong with you. MRI's are very in depth and take longer to complete; about two hours in our case. For children, intravenous sedation is usually required. (Someone please correct me if I'm wrong.)
So the CT took about ten minutes to complete. I'm standing in the room with my Mom and Mike, and Emmy is in the tube getting scanned. The minute the machine stopped moving I turn my head to look through the glass partition that the doctors sat behind. In that instant, they looked up from their computers. Their expressions said everything.
We were brought back to our ER room and the attending physician shut the door behind him. He asked me if we knew what our pediatrician thought the cause of the headaches might be. I couldn't remember. The only thing I could think of was that she said it could be a mass. I said the words "a mass" three times before the other two options came to mind. "Good," he says. "Let's go talk about 'the mass.'"
A Tumor by Any Other Name
Apparently tumors have many names; but really, a tumor is a tumor, right? Posterior Fossa Tumor: that's what they called it at first. Just a name to describe a mass in the back of your head. We had an MRI and suddenly, our tumor was called a "cerebellar tumor." It would have to be removed in surgery to get a final diagnosis and another name.
The cerebellum is the part of the brain located in the back of the head near the base of the spine. It controls motor skills, speech, eye movement, facial expressions (smiling), among other things. Loss of control of these skills were just one of the many risks associated with the surgery.
We met our neurosurgeon, Dr. Andrew Jea a few hours after the MRI in the back of the Imaging recovery room. I just can't say enough good things about Dr. Jea. He's my hero. He is Dr. McDreamy, Asian style. So awesome. I've never met such a compassionate individual. He really cares about his patients and calls Emmy one of his own.
Dr. Jea went over the MRI in detail, informing us that the tumor measured 4x5x3 centimeters. That was big. Really big for a three year old. About the size of a lemon, though Mike insists its the size of a baseball. (I don't play baseball.) He would make an incision from the nape of her neck to the middle of the back of her head and cut out a small square window in her skull to take it out. The surgery was to last from six to eight hours.
Surreal. When I was told it was a "mass" and they presented us the brain scan images, I was just shocked. I really, truly felt like I was watching an episode of Grey's Anatomy; like this was not my life. Like this was not really happening to her. I still feel that way today, days later. She is just too young.
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