This Little Piggy...

Just wanted to share some photos of all three kids. Trust me, as cute as they are, getting these photos are like pulling teeth.

Emma is 5 1/2, Hannah 3 1/2 and Josh is 1/2 (in other words, 6 months).

Catching a Break

I know its been a while since I've posted, but I have good reason, really I do.

A friend of mine told me what another friend had said of my current situation, "when I go to bed tonight I'm going to start my prayers with 'Dear God, can Jayne Maltbie please catch a break?'" Ha. It made me laugh.

I sit here now on a hospital bed. My own hospital bed. I've been diagnosed with possible viral meningitis. Thank goodness its not the bad type; not the bacterial, deadly type. Thank you God for that one. I guess I was just running too much and needed to slow down.

This is my third day here. It started off Tuesday with a bad headache, the worst I've ever had. The pain went down into my back; even my knees and ankles hurt. I tried every pain killer. Tried to sleep it off. Nothing worked. Of course Mike was out of town, only adding to the perfect scenario. I stayed with my parents that night to get some help with the kids. By the end of the day, I was running a fever and decided to go to my family doctor the next morning.

I won't lie, I was quite worried. I thought that this might be a brain tumor. Given my family history, and the fact that I was smelling cigarette smoke for a month, it made me nervous. Google did not help. Apparently phantom smells are related to brain tumors.

Our physician's nurse practitioner that saw me earlier in the day decided it was just a sinus infection, and the pain down my spine was likely attributed to my tension headache. She gave me an order for x-rays to see if I had thrown out my back. For the pain, I was given a steroid shot to reduce inflammation and some antibiotic for my "sinus infection." I left feeling as though I had been rushed and misdiagnosed. Could I have just mistook this pain for a sinus headache? I didn't think so.

After waiting three hours for the steroid shot to kick in and my pain to be relieved, I finally called a friend who is a physician's assistant at MD Anderson's Emergency Center to get her opinion. Only the best people can diagnose meningitis over the phone. She told me to head to the nearest emergency center and check myself in. (She rocks! Thank you, T.)

Long story short, I had good labs and a CT scan, but the spinal tap was abnormal. They are keeping me here until the blood cultures come back negative for bacterial meningitis, which it is looking like it will. Good news is I don't have a brain tumor. My brain looks good, so that is definitely piece of mind.

Vacation

Emma is upset with me. She won't talk to me on the phone. Someone told her that I was at the hospital and she's been having nightmares and acting out since. Poor kid. I know she's scared that I'm here. God knows the hospital is not her favorite place. She can't come to visit, as the rules are no one under age 12 is allowed on the patient floors. I miss my children. I pray that I will get out of here by tomorrow at least, as her MRI is on Monday.

Stress on top of stress. Well, at least its quiet here. Maybe I should find a margarita machine and call this a vacation. ;)

From the Frontlines

Thank you for your thoughts and prayers for our little girl! She made it through surgery with flying colors!

(Sorry if I am a little vague on this post--this post has been composed with lots of cutting and pasting of various emails I have sent out via Blackberry and my hands hurt.)

Emma went into surgery yesterday to remove a recurrent brain tumor. Surgery lasted for about 6 hours and she did very well. The neurosurgeon, Dr. Andrew Jea (a.k.a "surgery god" a la Grey's-of course) removed the entire tumor! He said he thinks he got it all. ALL of it! Best part is that Em still seems to have all of her motor functions intact though we are watching her eyes to see when the movement will return.

I am just thankful that she can still move arms and legs, swallow and breathe on her own, and we can still hear her sweet voice. Last night she was singing and clapping, and talking about snow. I know her guardian angels are talking her through this right now. She is so amazing!

We are still in the PICU, waiting on a post-op MRI this afternoon to see how her brain is doing and if all of the tumor is completely gone. After the scan we should move up to the recovery floor where we expect to be for up to 10 days.

The baby is due 8 days from now, but we are hoping that he will "stay in his womb" (ha ha) until we get home with Emma. Fingers crossed. As expected, we are exhausted! We stayed the night at the hospital, me at the Ronald McDonald House, stretched out in a bed; Mike in a chair all night by her bedside. Neither of us slept.

Thanks for keeping Emma in your prayers. When I get to an actual computer, I will elaborate on this post if I have the energy. We are still in good spirits, albeit exhausted, but super elated nonetheless! Go Emma! And thank you God!

Sent via BlackBerry from T-Mobile

Prayer Request for Emma

I know this is really short notice, and I apologize, but I would like to make a request that everyone reading this prays for little Emma.

Our MRI scan on Saturday, November 7th, showed that the tumor has grown much larger than her last scan in September. So much so that it is causing hydrocephalus; blocking the fluid in the brain.

We met with doctors all day long today and made a plan. She is to be admitted at Texas Children's Hospital tomorrow and have immediate surgery to resect the tumor. We expect most of everything to be the same as last time: surgery length and recovery time, but now the tricky part is the actual surgery. The tumor lies on the surface of the brain stem, and the complications that arise when resecting a tumor from that area can range from hearing loss, mutism, vision impairment, paralysis and even worse-but we won't mention that. Scary stuff.

So I'm asking for prayers, to lift her up, to give us strength. Pray for doctor's steady hands and speedy healing. Make her whole again. Pray for our family, that our baby doesn't come early. We are due ten days from now, but I need to be with her first. Make her healthy so she can hold her new baby brother in her arms.

Thank you friends. We will keep you posted from the OR tomorrow and fill you in on the rest. Go Emma!

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.