Super Emma!

I asked Emma what she wanted to be for Halloween this year and was surprised when I didn't get the obvious answer of "princess."

"I want to be a superhero!" she said. Little does she know, she already is.

Meet Super Emma and her fairy sidekick Thumbelina.

Sadly, I cannot find the really good photos that I shot of the Halloween carnival. When I find them, I will post.

Seconds and Thirds

It's been a while now since we found that Emma's tumor has grown back. I've been in a bad place. Lately, it's been really hard for me to function. I break down crying all the time. Chalk it up to stress as well as pregnancy hormones--whatever; I'm just a freakin' wreck!

I've been in denial, a little upset with God, wavering on my faith. Mike was like this for just a split second, but went to speak to Father Clint at our parish to "get right with God" and he's all better now. He has been urging me to go, but I'm not ready yet. I couldn't even sit at church during mass to pray for her without losing it and crying like a baby. It's been awful. I've had a hard time believing that Emma will be okay. I needed a boost of faith.

God answers prayers. He heard me calling. One random Monday in the month of October, my Mom decides that she wants to go to a "healing mass" at my Grandmother's church. Apparently, a "miracle priest" from Argentina was going to hold a mass for the sick. Ok, I'll buy it. What's the harm, right? Anything helps. Mike and I brought Emma and Hannah to the church and met my parents there. No one told me it was all in Spanish. Ok, that's fine. I'll just pray the whole time.

And so I did. As expected, I pretty much cried through the whole thing. Emma and Hannah were restless in the pews, jumping around and looking for pens and paper to keep them occupied. Mike just prayed in silence for the entire two hour service. After the first hour the priest started to walk around, holding up the chalice to bless the parishioners. He stopped at every pew. When he got to ours, he stopped for a longer period of time as though he knew that we needed him most. I looked into his eyes and began to cry and lowered my head in prayer. Mike was holding a sleeping Emma in his arms.

He said that when the priest was praying over him, he felt this wave of calm and peace surround him. Then he knew everything would be okay with Emma. I believe this is true. I felt that wave of peace as well, but much earlier in the service. In fact, God sent me a vision of the three of them--my kids--all grown as teenagers in a photograph. They were happy and healthy. And I knew this was the future.

Since that night, I've felt better, stronger. Good with God, unwavering in my faith. I feel at peace. I cry less now than I did before and I have pushed all bad thoughts out of my head. Sometimes a few will sneak in there, but I don't listen. I am positive and strong. I know Emma will survive this.

Another Opinion
A month or so after meeting with our team at Texas Children's Hospital, Mike and I asked for a second opinion on treatment options from different hospitals. Not like we didn't trust our team, on the contrary, we love our team so much. But somehow, I think Mike was searching for answers and looking in every possible place.

We asked TCH to send our information to St. Jude's Children's Research Hospital in Memphis, TN. There we sought the advice of Dr. Frederick Boop, a neurosurgeon, that has treated many pediatric Ependymoma patients. Interestingly enough, the recommendation came back that we should treat with chemotherapy first then surgically resect the tumor if chemo didn't get it all.

We also met with MD Anderson's Dr. Johannes Wolff. It was an odd meeting; he asked why the need for a second opinion if our team was a good and capable one? Um, okay. He suggested that we also consider chemotherapy. In fact, we should consider a very personalized form of chemo, "designer chemo."

There is a difference in opinion regarding a chemotherapy treatment plan between Texas Children's Hospital and MD Anderson. This is because each hospital follows different Ependymoma protocol; studies that were conducted on other patients, all with Ependymoma brain tumors. These are the numbers, the hard facts.

Dr. Su at TCH follows the studies that were done stateside at St. Jude's, while the MD Anderson bunch follow the CERN protocol. CERN is the Collaborative Ependymoma Research Network to which MDA is a member of. CERN protocol (correct me if I'm wrong) is based on research done in Europe which uses chemotherapies to treat Ependymoma tumors. According to the St. Jude's research, chemo doesn't do much for Ependymoma, which is why we never did it after the first surgery. The European studies believe that it does help. Who to believe?

Personally, I really don't want Emmy to do chemo. I wouldn't want her pumped full of terrible toxins and drugs that do awful things to her body, when the data shows that it won't do much for the tumor. I'm thinking quality of life here, right? But, it is not something we have crossed off the list, just yet.

There is something that Dr. Wolff recommends, which in a nutshell is "designer chemo," tailored to her specific tumor. It involves taking a look at her previous tumor, plus her current tumor and doing some mapping--looking for specific genetic markers and choosing the drugs that would best combat the makeup of this tumor.

It's an option, yes. We are somewhat inclined to just use chemo to shrink the tumor, as surgery would be so super tricky since the tumor is on the brainstem. So I think we might take the chemo over surgery for now. Let's see what the doctor's say. Our next MRI is scheduled for November 7th. Fingers crossed.

A Return to Square One

I have a confession...I hate this blog. I hate it because it means that our cancer journey is not over. I wish I could walk away from it, and not have to update it because that would mean that my sweet Emma is healthy and doing very well, and we are getting on with our lives.

Please don't get me wrong, this blog has brought so many good things, especially hope and prayer for our daughter, and for that we are so, so grateful! Its such a blessing to know that there are people out there that have never met this little girl but love her and pray for her like their own. Mike and I know that the reason Emma has survived and done so well, is because of the thoughts and prayers of everyone that reads this blog. And for that we thank you.

But truth be told, I wish I never had to start a cancer blog for my 3-year-old child. Who does?

September 2009 MRI Results
We had a routine MRI done for Emma on September 8th, the Tuesday after Labor Day. The procedure was nothing out of the ordinary. Wake up super early to get there before 7am. Em didn't even flinch at getting her port accessed and poked with a big needle this time. What a brave girl. It was what happened after recovery that tipped us off that something was not right.

We had just picked up Emma from the MRI recovery room and were about to leave the hospital when we were surprised to see Dr. Su, our oncologist, walk around the corner. His office is usually in another building altogether, so seeing him at West Tower was a bit unsettling. His actions were rushed, the conversation was vague and he looked mildly distraught. All I can remember was him saying something about the tech calling him down to look at the scans because they saw a "spot" there. And not to worry as it was probably nothing. Mike, my Mom and I were all dumbfounded as we left the hospital.

Driving home, I just couldn't shake the feeling that something was wrong. What spot? I was starting to get worried. I thought maybe he forgot who we were and had Emma's records confused with another patient. But doctor's don't do that, do they?

As usual, Mike and I had taken two separate cars and he stopped to get copies of the scan before heading off to work, something we do every time for our records. We share the scans with our good family friend David, who is a radiologist. His help is so much appreciated; he gives you his medical opinion without waxing it the way another doctor would. Mike brought the scans to David for review, as we wouldn't get word from our doctors at Texas Children's Hospital until two days later.

By 4pm that afternoon, I was so bothered by not receiving a call back from Dr. Su and his odd demeanor at the elevator that I called Mike and asked him to call Dr. Su to follow up regarding the "spot" on Emma's scans. He did. No word back that night at all.

I was laying on the couch at my Mom's house, exhausted. I was watching the girls play while the baby kicked inside me. At this point I was about 7 months pregnant. My cell phone rang and it was Mike, calling to tell me what he had heard from David's review of that morning's MRI.

"I spoke with David," he says. "He confirms that the tumor is back."

Oh my God! I got up of the couch and started quietly sobbing, not wanting to alert my Mom or the kids. I stepped outside and sat on the front step and listened. Mike said that what David saw was likely a tumor that had regrown on the brain stem. Though it was small, only about 5-7mm, or the size of a corn kernel, there was still cause for alarm, as eventually it would grow bigger again.

Her cancer was back. I felt like I had been kicked in the stomach. I couldn't stop the tears. All of the strength that I had last time was gone. I cried so hard, I thought I would vomit. But nothing would come out. I had nothing left.

What were we going to do? Why is this happening? I felt so overwhelmed, so saddened, so betrayed by God. How could he make her well, only to take it away again? What did I do wrong? Did I not pray hard enough? How could I handle all of this with a baby? All these thoughts raced through my mind; the crying and sobbing was uncontrollable. I wanted to scream. I felt like I lost her already--all I could think about was death. It was horrible.

My brother walked out of the door to my Mom's house and looked at me like I was crazy. He asked what was wrong, and I couldn't answer. I didn't want Mom to know yet, I said. He walked away, and left for work, and I text messaged him as he got into the car. It said "Emmy's tumor is back." He replied, "I'm so sorry."

Mike arrived seconds later to console me, but we both cried together, sitting on the front step, vowing that we would beat this again, that she would be ok.

Would she? I don't know. I wish I did. But I have no fight left. Hopeless is not even the right word.

The Final Word
We got a phone call the next day from Dr. Su, who apologized for not calling back immediately. I speculated that night that he wasn't calling us back because it was true, and that there was a tumor after all. He was probably planning with Dr. Jea (neurosurgery) and Dr. Paulino (radiation oncology) what the course of action would be. I was right.

Mike and I, along with my parents, went in on Thursday to discuss the finding of the scan. The basic gist of the conversation was that the tumor was located on the brain stem, confirming what our friend David had said. Apparently, it recurred locally, meaning it was the same spot that Dr. Jea had left intact in surgery. That 1% that he hadn't removed because it was too risky. The 1% had grown back. Unbelievable. The problem this time is that a second surgery was even trickier than before. Removing the tumor may have severe side effects. There was no telling what part of the brain stem the tumor was clinging onto and by removing it, we risk leaving her paralyzed, or mute, or unable to swallow, or breathe on her own. Worst case scenario is death. But I knew Dr. Jea would never let that happen. There was a high chance that she would have some deficit. About 50%, I think. I don't like those odds.

The plan was we wait 6 weeks to do another scan to see if there have been any changes, if so, 3 weeks later, they do a spinal tap to check for any metastasis into the spine, then a week later, surgery. And of course after that radiation again.

"Surgery? In that timeline? Wait, that's nine weeks away! I'm due in ten weeks," I protested. That can't happen. How was I going to have my baby recovering from brain surgery, only to have to care for another brand new baby? I couldn't even wrap my head around the possibility.

I asked Dr. Su if we could wait a few months, at least until January. This way, the baby would be two months old, and Emma would have had a lovely Halloween, Birthday, and Christmas. A nice quality of life. The chances of the tumor spreading was only 20%, and he was pretty certain it wouldn't metastasize as early as next year.

Meeting with Dr. Jea a week later, confirmed everything Dr. Su had said. The only difference was that he wanted to do the procedure endoscopically. Great news! Just drill a little hole in Emma's head instead of opening her up all the way to remove the tumor. It sounded like a better deal. But he didn't want to wait, next week would be fine, he said. No, I want to wait, I told him. Just hold off and let her have a few more good months. He approved.

Eye Surgery

Em had eye surgery to correct her strabismus and 4th nerve palsy in late June. Easy as pie surgery. We were in the Day Surgery Floor where she was prepped and got to wear some cool, blue kid-scrubs. She loved pretending to be a doctor. Prior to surgery, Dr. Edmond came in to say hello and mark which eye was to be operated on. I don't think Em was too pleased about that. See below.

A few days out of surgery, the eye was still blood red and looked a lot worse than it really was. I'm sure people were going to call child protective services on me. Having the surgery was fantastic and corrected her head tilt and evened out her balance issues. She also showed improvement in her drawing skills and other fine motor skills. We're going on vacation pretty soon, and one of Emma's lingering concerns is whether or not she'll be able to swim, since bathing was postponed for a few days. Somehow, I think we're going to have a great vacation.

It's a Boy!
Yes, you heard right. We're pregnant! Not totally planned, though we wanted to have another eventually. I got pregnant in February on the heels of a really trying year. I won't lie, I wasn't ready. I was emotionally and physically exhausted, as well as working through my depression of Emma's cancer. I was angry at Mike for a while and in some sort of denial. How was I going to handle three children on top of mine and Emma's already hectic life?

We found out on the first of July, on a 22 week ultrasound that we're expecting a boy! Finally a son! We are totally elated, and Mike says that the only reason I haven't killed him yet, is because having a boy saved him. Yeah, that's the truth.

As time passed, and I slowly began to realize that this is all a part of God's plan and this little baby is our blessing. I am due on November 19th, right around the girl's birthdays. Perfect. Ha ha. November is a crazy birthday month for us. Mike on the 5th, Emmy on the 13th, Hannah and my Dad on the 20th.

The girls are so excited to welcome their baby brother. Em wants to name him Max but Hannah prefers "Tingy." Tingy is a name she made up, her little pet name for everything: Barbies, oven mitts, stuffed animals. They have already divided up the baby chores between them, arguing about who gets to change the dirty diapers and who gets feeding duties. It's too cute. I have peace of mind knowing that he will be so loved and we will have a full, happy and healthy home this fall.

Full Circle

I can't believe it has been a year already. One year since Emma's diagnosis and surgery. Our lives have changed so much.

It's kind of bittersweet. Do you celebrate it? Is it a milestone because she's survived a year past diagnosis? I don't know. Mike and I decided not to make a big deal out of it lest we jinx ourselves. So the day went by quietly and unmarked by any sort of celebration.

June 2009 MRI Results
The last MRI in March showed that her brain scans were clear. This time we weren't expecting anything less. We got results that everything looked good. No signs of any "spots," no nothing. She was strong, healthy and doing great. We are so happy that everything is well.

To the Beach!
Emmy has always loved the water. This year we decided to spend as much time at the beach as we could. We headed down to Galveston for day and the girls loved it so much. A few photos as evidence.












In July, we've got a vacation planned for Rockport, Texas. A good friend of ours has loaned us a beach house on Key Allegro and we are all excited to go. Can't wait. Hope you have a great summer!

Anxiety is the Beast

I hear myself tell my story, and it becomes new again. I hate that. I think whenever people go through something traumatic--like your child having brain cancer--it's best to leave the memory behind when you can.

Denial
Emma started aquatic therapy April 1st, weekly for 12 weeks. She has never had swim lessons, so its really wonderful to see her enjoy herself so much. We love our therapists, Lance and Rusty. She gets quite the work out and is literally a wet noodle at the end of the session.

I'm in a conversation at aquatic therapy on Wednesday, talking to another mom I've been trying to avoid for weeks now. (Oh man.) I hear myself telling her that Emma is now four years old and had a malignant brain tumor removed almost a year ago. (Ugh.) I also hear myself saying we are fortunate. And really we are. I almost feel guilty that this woman cannot have the same thing for her child. The one confined to a wheel chair, with a feeding tube and no muscle tone at all. Her beautiful 3-year-old daughter who is almost blind, doesn't walk nor talk much because of a brain bleed that occurred in utero. (Sucks!)

Here I am telling my story; my child is alive, and healthy and swimming. Yet I avoid this woman and other parents at hospitals, why? Not for lack of compassion. But only because I want to be normal. I don't want to admit, or even remember what happened last summer. I want to pretend that Emma a normal 4-year-old girl. Is that wrong? Sometimes I look at myself and wonder if this is how I should be handling the situation. Most of the time I don't have the answer to that. In fact, I don't know if I ever really will.

March MRI
The last MRI that Emma had in March was completely clean. Not even the "little spot" that the doctors were watching was evident.

Dr. Andrew Jea, our neurosurgeon, started by showing us the previous scans from January; then the new March scan. When the new images came up on screen, I gasped. There was nothing. No tumor, no spot, nothing at all. Amazing! I was speechless. Mike was standing next to me, so taken aback and relieved that he began sobbing. I had my doubts that this was correct, but the Dr. Jea assured me "Emma is tumor-free." I was beside myself.

So since March, we have been trying to be those normal people. To try and give our daughter the best, most normal life we can. This is an extremely difficult thing to do, especially for me. That "tough as nails" persona, the "strong mother" thing, it was all just temporary. I set my emotions aside--as I often do--to deal with the hard issues. I am more effective that way. I didn't cry, I didn't even let myself feel anything until it was done. Not that we are out of the woods yet with Emma. But in November, when we moved back into our house, when her cancer treatments were over, when I could finally relax a little, that's when I really found myself hitting rock bottom. The weight of every little emotion I had been collecting came crashing down on me. It was hard to breathe. I had terrible anxiety and mild depression. I still have issues today.

There. I said it out loud. So now you know. This is part of the reason I've been hiding far away from this blog. It's easier to forget the bad stuff if you ignore it. I choose to focus on the positive.

School is Cool
Emma started school in March at our local elementary. She's in a Pre-K Montessori program that seems to suit her well. She actually got accepted last year in the spring and was supposed to start in August. But God had other plans. In June she was diagnosed with a tumor and when school started in August, she still had more than two weeks left of radiation therapy. The school people were kind enough to hold a spot until October, but she was still quite fatigued and still suffering the lingering effects of radiation therapy, so we decided to pass on the opening. So when a spot in the program opened up in March, we jumped right in. We were encouraged by doctors and therapists to place her in a program that would more mentally stimulate her. She went from one day a week at daycare to a full-fledged, five day a week montessori program. It was a very tough transition, but she loves it. Today was her last day and summer vacation has now officially started.

Anxiety Issues
Currently, there is another MRI scheduled for June 1st, and the past few days I have been haunted by nightmares.

The first one was odd: a room full of random people, inflating balloons of all colors. It didn't make any sense. The next thing I knew all of those random people, including myself, were in the middle of a grassy field with balloons in hand. A man stood in the middle of the crowd, releasing them one by one into the sky while saying a name. The first one was "Emma Maltbie." I woke up immediately and was really shaken.

The next dream was even worse. All I remember was that she was in a child-sized coffin, open-casket, people sobbing all around her. I'll leave it at that. Just describing it is too much for me to handle. I woke up crying and really distraught and I can't get the image out of my head.

So hopefully those dreams don't come true. I know I'm not psychic; let's hope not. I ask you to pray that our little Emma has a clear scan on the 1st of June again. I don't ever want those dreams to become a reality. Can you hear me God? I hope you're listening.

It's Been A While

Hey there blog, long time, no see. Sorry to have neglected you for almost four months; I hope you are not mad at me. And I hope your readers can understand where we've been. I've kind of been hiding out from the blog world and trying to slowly sort out the chaos that is my life.

So I just want to catch up by saying, "Happy Thanksgiving," "Merry Christmas," "Happy New Year," and "Happy Valentines Day!" Ha. So glad I didn't miss St. Patrick's Day too.

I will try to be a better blogger, I promise. I swear though, time just flies. This post will be a short one since I am exhausted from the day I've had, and exhaustion equals blogging gibberish. What I plan on doing is to recap you really quickly on the past 4 months and then later fill in the blanks with more in-depth posts (maybe). This is the plan, let's hope I stay on course. Any bets?

Emma's Progress
Mike and I are so blessed to have such an awesome kid! She is doing great, just wonderful. These days she is more physical, alert, has a better appetite, and more energetic. She still enjoys weekly dance class and now plays soccer at the local YMCA. Emma has skills with the ball, but then gets distracted by stopping to pick flowers in the grass. Go figure.

November
Shortly after Emma's birthday, we moved back into the house. It took forever to get things done. The roof was fixed, carpet replaced, and the ceiling dry walled. Liveable enough, we moved back in the day before Thanksgiving and hosted the holiday dinner the next day. Very tiring. The girls were elated to get back into the house. Since then, we've just been trying to get back on track with daily living.

December
I have been on hiatus from my photography business since Emma's diagnosis in June, which allowed me to spend more time with the family. Probably the best decision, as December turned out to be a wonderful month without the stress of my busiest season.

On the 20th, Emma was chosen as a "star" for Texas Children's Hospital's 2008 Cure Kid's Cancer Radiothon and got to speak live on-air with 93Q radio personality Cactus Jack. She sounded so cute and even read the 1-800 pledge number on-air. Future broadcaster? Hmmm.

They also aired our interview from October (set to music--"Higher" by Creed) on 93Q and 106.9 The Point. Of course I sounded like a dork, but Mike had the perfect radio voice. It was a nice story and was more uplifting and less of a tear-jerker than some of the others that were aired. Hopefully I can dig it up and post a link on here. The Radiothon raised more than $771,000 for the Texas Children's Cancer Center. Awesome. Thanks everyone.

Christmas was a great celebration for Em and Hannah; I have photos to prove it (likely in a later post). They now fight over the bike with training wheels that Santa brought for Emma. Darned Santa, he's not always the equal opportunity gift giver that we wish he was.

January
This month brought an MRI on the 10th. Emma did well with sedation and the trauma of getting her Port-a-cath accessed. We have actually been getting it flushed monthly, which involved her getting poked with a needle. Trauma isn't even the word! Apparently one time the numbing cream didn't work, and since then, I have to pretty much sit on her as she screams and wriggles in order for the nurses to do their jobs. Nice. Not looking forward to the wrestling match at the next one.

We were on pins and needles about the MRI since her balance was off and she had complained of her head hurting again. The MRI results showed the spot they were monitoring was still there. No longer deemed "blood product," the doctors felt that there was "no change" or "minimal change" (yikes) and decided to move the next MRI a month sooner, bringing us to March 4th. The headaches were caused by a nasty sinus infection, which I thought was just a really lenghty case of "the snots." Never underestimate the power of mucus.

February
Not much here, except Emmy started soccer season. Soccer has really helped her out; it has seemed to be very theraputic. Her balance is better, her appetite is back, she sleeps well. Too bad it only lasts for 6 weeks. The entire team is comprised of boys, so she is the little princess. She has great talent on the field, though she can usually be found picking flowers in the grass, or holding hands and dancing around with the boys. It's safe to say, the team rarely wins. But at least its cute.

Up To Speed
So that's basically it in a nutshell. I didn't give you any insight on how things are going with me emotionally, but save that for another day. I've got some heavy baggage, you know. Right now, I'm going down that path of restlessness that I find every time we have to do an MRI. I get quite a bit anxious, but I'm sure that is normal.

When we got the January results read back to us, it made me sick. I mean its true that "no news is good news," especially in this case, but I just was really expecting Dr. Su to tell me everything is gone and its fine. Instead I hear that we have to keep our eye on something. Not what you want to hear.

So I ask God tonight to let Emma have a good, uneventful, clear scan tomorrow morning. Please, God.

Though I'm sure it will be fine, it never hurts to ask, right? Fingers crossed.