Down, But Not Out

That's our motto here. We are keeping it hopeful, and keeping it real at the same time. Hard line to walk. If you are out there listening, reading this, I ask you to please keep Emma in your prayers every day. I know you might already be doing that, but we need them so much right now. Every little request for God to heal her. Please take away all the cancer in her body and make her whole. Please let the scans be clear on Monday the 15th. We need them to be clean and cancer-free!

I've been trying to write this blog post for a week now, but somehow everything gets in the way. It's always something. So here are the details, if you are so inclined to read on.

Spinal Tap, or Lack Thereof

The Thursday before last (11/4), was a long day. We were scheduled to come in early, meet with oncology, see ophthalmology, then get a spinal tap, or "lumbar puncture" for Emma to see if any cancer cells had spread to her brain fluid. It didn't really work out according to plan. Emma did not have her spinal tap at all. It was cancelled due to scheduling conficts and instead we met with oncology for almost three hours.

I love our oncologist, but I hope he's wrong. His opinion is that the "spot" we are watching is indeed a tumor. He said "I would be surprised if it wasn't a tumor." The reason being that it has a very defined shape and doesn't look like most normal scar tissue--please be scar tissue, please, please! But he also said he is happy to be wrong. Let's hope he's wrong. Pray for it!

The "spot" (sorry, I just can't call it a tumor) is in a different area of the brain this time. Not the brain stem, where it has recurred before the past two times, but in the cerebellum. We took a look at the original scans vs. the scans from a few weeks ago, and you can see that the "spots" almost match. The original tumor in 2008 was enormous, the size of a baseball. This new "spot" is very small, maybe pea-sized, but lies in the same plane as part of the old tumor that was removed. Unfortunately, doctors won't treat it like a recurrence, but a metastatic tumor, meaning one that has spread. This changes the game plan entirely.

If our MRI on the 15th confirms growth of the "spot," then we will have to do full radiation to the brain and spine after surgery. Though we don't have all of the specifics just yet, we have been given our options for post-surgical treatment and are exploring them. We have already met with a doctor that works with Phase I and II clinical trials to get the information on that option. (Not a great option, but at least its there.) In the next few weeks following the MRI, we have meetings with radiation oncology set up again.

There's another thing I haven't mentioned yet. Remember that fluid-filled bump on the back of Emma's head? The pseudomeningocele? Right, well, there is a possibility that the reason it is not flattening out or draining down into the spine may be because of a blockage. You see, brain fluid (CSF) circulates around the brain and down into the spine and back again. In Em's case, the CSF is moving, just very slowly. Slow enough to allow the fluid to pool into the little bump on the back of her head. The possible blockage could be caused by scar tissue, thickened fluid, or worst-case, a tumor on the spine. A spinal tap or spine MRI is the only way to really tell. Sigh.

So the plan is this: We have a scheduled full brain and spine MRI on Monday 11/15, and see what is going on in Emma's little body. Depending on results, we will either do a lumbar puncture (spinal tap) to check for cancer cells in the fluid, or not. The spinal tap all depends on whether or not the spine scan shows any tumors. If they can see something visually, they will spare her the pokes. Worst case scenario, Emma has surgery a week later to remove the recurrent "brain tumor." A week later, we begin radiation therapy, then whatever else we've got to throw at it.

I have to say, all this talk of something that I know is not there really winds me up. I'm not hopeful, I'm positive. Positive that she will be cancer-free. And this upcoming scan will confirm that. I know I'm right, I've got to be.

Birthday Week = Rough Week

So my goal going into this week was to avoid hospitalization. Good goal, don't you think? We were looking forward to Emma's 6th birthday on Saturday the 13th. As part of her birthday gift, I was going to take her to Disney On Ice, Princess Wishes and she was very excited. Just me and the girls--Mike was out of town at a national sales conference until Friday (not fun with three kids).

But by Monday, we were all upside down again. Em had been vomiting again with a low grade fever over the weekend, so I called the oncology nurse. I got a return call asking me to check her into the ER again. At first I was going to do it. But then the Mom in me decided that my little girl needed to have a good birthday week, without hospital involvement. I called back and was adamant about not checking into the ER. So we saw the Dr. Su at the Cancer Center instead-we were seeing the Phase I doctor and had therapy later on anyway. Dr. Su agreed with trying to give Emma a "normal" week, as long as her body permitted. He sent us off with a prescription for an antibiotic for her mild ear infection--probably the cause of the fevers.

We trudged on. On Tuesday, she attempted to return to school for a half-day. I wanted her to be in school all week, because on Friday the class was going to have a birthday celebration for her with cupcakes and photos of her on each year of her life. She was going to share stories of her life's adventures thus far. It would've been lovely.

Falling

But by lunchtime, around 11am, something happened. I got a phone call. The number on my cell was from the school; when I answered it, the nurse gave me the news. Uh-oh. Emma had lost balance and had fallen off the chair while having lunch in the cafeteria. She fell backwards and hit her head, right on her bump. Great. Fortunately, the school nurse is an ex-pediatric neurology nurse who worked in the brain tumor clinic at Memorial Hermann. (I'm pretty sure that is the right hospital.) I can't tell you just how wonderful it is to have your school nurse know exactly every detail of Emma's health issues and understand them fully. It's so cool! We are very blessed.

Nurse Chapin told me that Emma seemed to be okay, but her concern was the size of the bump on the back of Em's head. Emma's teacher, Ms. Blanco, later confirmed that although it was a huge bump, this was a normal size for Em.

I got there ten minutes later and Em was back in class, sitting a desk with her lunch tray, but not eating. She looked exhausted, droopy-eyed and pale. I apologized profusely to her, wishing I had never sent her to school that day. I held her tightly, kissing her head, telling her I was sorry. She stared to squirm and in an instant, she was vomiting. Fortunately, I move pretty fast, so I had her vomit into the trash can instead of all over the floor. It was really hard to watch her friends see her getting sick. Thankfully most of them were unaware and were in a lesson with the teacher. My heart was heavy; I so wanted her to be one of those healthy kids sitting on the rug happily listening to a storybook, instead of vomiting into a trash can.

I took her home to rest and the vomiting continued through the next day. By Wednesday, she was worse off than I had imagined. Poor thing. She couldn't lift her head off the pillow. All day long she tossed and turned and never got comfortable. Her vomiting was getting more consistent and frequent, as was her pain. She began to get more lethargic and sleepy. She took four naps that day; a far cry from her usual "I'm not tired" routine. I felt awful for her, knowing she was in so much pain and there was nothing I could do.

Birthday Princess

By the evening, she was too sick to go to the Disney Princesses she was so eager to see. I was heartbroken. The event was for both girls' birthdays. Hannah and Emma are exactly two years and one week apart. Needless to say, combined parties are the norm around here. Hannah was just as excited to see the Princesses as Em was. I tried to talk her out of it since her sister was sick, but I was met with crying and tantrums. I felt bad. What do I do? Take one, and not the other? Abort the mission altogether? After some consultation with friends and my mother, I decided I would only go if it was alright with Emma.

"Hey Emmy," I asked, "is it okay if I still go to see Princess on Ice with Hannah? Will you be too sad?" She looked at me with her tired eyes, and said "yeah, it's okay Mommy. It will be fun." Guilt was eating at me as I got up to go. I felt awful pretty much the entire time. On the drive there, I called Dr. Su to update him on Emma's situation. He said that by the looks of her on Monday, he had suspicions that we might be back later that week. He told me to bring her into the ER where they would do another head CT to see what the hydrocephalus was doing to her brain. They would probably also do a temporary shunt to relieve the pressure build up.

I felt awful. Was making the decision to keep her out of the ER in lieu of a good birthday week the wrong one? I've looked at it in so many ways, and I am really convinced that every birthday should be celebrated. Every birthday. I never want to regret missing one. Still, I am conflicted daily with having to choose between a normal life for my daughter, or one lived in the hospital. For now I choose normal. As normal as we can get. And I will do this until I don't have a choice anymore. I hope that's the right call.

I will admit it was good spending that time with Hannah, to see her face all lit up with excitement and joy. But I missed Emma a lot. I couldn't help crying during the Ariel part. Emma loves mermaids and this act was so cool, she would've enjoyed it so much. When I got back home to her, she was so listless that she wasn't even interested in the souvenirs or photos I took for her. I was debating on whether or not to take her to the ER that night or in the morning. Looking at her resting so soundly, like a true sleeping beauty, I decided to wait.

Photo of the Day

Just messing around with Google's Picnik, and I thought I'd share. This was in April of this year.

Mermaids, and Crabs, and Brain Fluid, Oh My!

Happy Halloween 2010! It's been such a whirlwind around here since Emma's surgery in September. She is slowly recovering, but not without incident.

Scary Stuff

Since surgery on September 15th, she's had two CT scans and one MRI to take a closer look at the bump on her incision site. Doctors have decided that it is a pseudomeningocele--a collection of brain fluid (also known as cerebro-spinal fluid, or CSF) under the skin. This comes from leakage from the the burr hole in the bone due to pressure from coughing or vomiting, both of which she has been doing since surgery.

I don't think I ever explained the specifics of her surgeries, so in the gory spirit of Halloween, let me elaborate a bit. Essentially, they open the skin, with a six inch incision from the nape of her neck to the middle of her head. Next, they drill a small burr hole in the skull, and cut a small square flap of bone which is then removed to access the brain. They put her all back together again and usually she heals very well, with no problems. This time, she caught a virus which caused her to cough and vomit, causing pressure in the head which pushed fluid out from the skull that has yet to fully heal.

Scans, Scans, and More Medical Jargon

Emma had nightly high fevers almost consistently for 4 weeks. The CT scans were done to make sure that the vomiting was not from increased pressure in the brain (hydrocephalus). At the time, she was fine. No brain swelling. She was also subjected to lots of tests--blood cultures and labs, urine cultures, etc. Still they could not determine what was causing the fevers. I was told it was a virus.

Early on Monday morning (10/26) I made a call to our oncologist to find out the results of some blood work that Em had done that Friday before. I told them she was still experiencing the high fevers over the weekend, and we were asked to come into the ER to get an MRI and do more lab work on Emma. We were admitted that night for what was to be a short stay. A little more than 48 hours later, we were sent home.

The MRI results were not nice. It showed that there indeed was excess fluid, known as hydrocephalus, in the brain, and that Emma's ventricles are enlarged because of it. Our neurosurgeon went into some detail regarding the scan. Aside from the enlarged ventricles and excess fluid, Emma's brain fluid is also somewhat thicker--what that means, I don't know, but it doesn't sit well with me. The hydrocephalus causes vomiting and sleepiness. The extra pressure in her head has also been causing her pseudomeningocele--the fluid-filled bump on her incision site--to swell. The bump is the size of a lime, and looks pretty scary.

Then there's the "new spot." A new spot we have to watch.

Yeah. When I saw it, I felt sick to my stomach. At this point, we are not sure what it is. It could be scar tissue, blood product or changes in the brain resulting from surgery, which was just 6 weeks ago (at the time). Good news is that it is not located on the brain stem, but on the cerebellum. Bad news: its very symmetrical and measures about 8mm in size. Ugh. Hopefully it is nothing. Our next brain and spine MRI is scheduled on November 15th, and if it has grown, then we have our answer.

Emma was treated with antibiotics, and given a medication that should help reduce the hydrocephalus. It's been a little over a week now, and while the size of the bump had reduced while she was in the hospital, it has since become larger. Though she is not vomiting or complaining of headaches much, and the fevers have subsided, I can see that she is still tired.

Our doctors are considering placing a ventricular shunt to help drain the fluid if the medication is not effective enough. A shunt sounds scary. It involves creating a burr hole in the skull into which a tube is inserted. That tube is then run under the skin, down the neck and into the stomach where it drains out. I'm sure its not as bad as it sounds, but it is permanent. And I'm sure it will hurt.

The Thursday Marathon

This Thursday, November 4th, will be a long one. Aside from an early meeting with our oncologist to discuss treatment options, getting blood labs drawn, and meeting with her ophthalmologist for an eye exam, there is also a Lumbar Puncture scheduled.

Also known as a spinal tap, fluid will be drawn out of Emma's spine to check for cancer cells in her CSF. The procedure is similar to an epidural, for those of you familiar with childbirth. FYI, the same fluid that flows through the brain also cycles through your spinal column. It is not uncommon for brain tumors to drop seedling tumor cells into the fluid, where they are free to float around and attach and grow to different parts of the brain or spine, spreading the cancer. Not fun.

I tell you honestly, we are pretty shaken by all of this. Mike and I are holding steadfast, trying to make it day after day. We try to give Emma every opportunity to be a happy, normal child. But I tell you, I am weary. I think the emotional stress has finally caught up with me after all these years. I feel like every time the tumor comes back, it knocks me down again and again, making me just a little bit weaker every time. Please pray for strength...for me and Mike and especially Emma. I hate that she has to endure this at all, but sadly, this is what she knows. It's her "normal."

Happy Stuff

On the plus side, Emma has been in pretty good spirits. She has gone back to school for half days lately, though her attendance is pretty terrible with all of her medical issues and weekly therapies. I think in the past two weeks, she's only been to school a total of 4 days. But she loves it and is glad to be there. I take her home early for therapies or to rest. She has very limited energy and can only endure so much schooling. What a way to start Kindergarten, huh?

She was really adamant about going to the Fall Festival at her school, so we did. She only lasted a few hours before becoming too exhausted, poor thing. It was a lovely day, all the kids in costume and great weather. Although there was no participation in bouncy houses or anything too physical, there was an overwhelming eagerness to throw balls and dunk Mr. Diaz, the Vice-Principal, in the dunk tank. Go figure. She missed of course; throws like a girl. I think she loved the hay stacks the best. (I have photos which I promise to fill in here, later.)

I guess I should tell you what they were dressed as for Halloween...Mermaids. Emma was a mermaid, of course. As was Hannah. And the baby? I couldn't resist dressing him in something that will forever embarrass him...a crab. I figure this is likely the only year where I can choose his costume for him. So I went with a theme.

Behold, the two mermaids and the crab...and the "cheesy" smiles.

How to torture your baby...put him in this costume and take his picture.

Halloweening with our Superhero friends.

And a little piece of sushi, too. :)

Halloween night was so tiring, but was spent with wonderful friends. Emma was very happy. She started off with some energy, but couldn't endure trick or treating like other kids could. Halfway down the block, she had to sit in the baby's wagon and get pulled around. That's okay; it was the best way to eat candy while on the road. She was quite content to just let Hannah bring her all of the treats.

In Conclusion
Thanks for your understanding as to why I don't update this blog often anymore. Lately, I have been too overwhelmed and exhausted with everything to be able to sit down and write (which is why this post is pretty uninspiring.) The truth is, most of the time I can't make it through the tears to finish a blog post. Nothing is easy. Everything is stressful. We take it day by day.

Please continue to send prayers for Emma. We are so grateful at the love and support we receive from everyone. Thanks so much. Please pray that her spinal tap goes well and the results are good! I really do feel like she is getting better daily. Even though its taken a longer time to heal, she will indeed heal.

I haven't said this in a while either, so I'll remind you kindly...take some time tomorrow to cherish your children and the ones you love. Just stop. Take one moment out of your busy day to see them with your heart, listen and love them. Don't forget that feeling...ever.

FW: Emma Update 10/29

Our friend Bill has updated some of you via email. Please send your thoughts and prayers Emma's way. Thanks Bill, we love ya!

---------- Forwarded message ----------
From: Mike
Date: Mon, Nov 1, 2010 at 9:26 AM
Subject: FW: Emma Update 10/29
To: Jayne

Our friend Bill is doing a good job keeping people updated and generating prayers for Emma. See below.

--Mike

Sent: Monday, November 01, 2010 8:46 AM
Subject: FW: Emma Update 10/29

KEEP THOSE PRAYERS COMING !!

Keep the Maltbie's in your prayers this weekend - they've got some serious tests to go thru next week with Emma. She was admitted Monday for fever and pressure on the brain. The MRI showed a spot on her cerebellum away from the surgery site, that could either be a shadow, a residual blood spot from the surgeries, or another tumor. The slight fevers persist, but she was released on Tuesday. Next week more tests will be administered to determine the nature of the spot and to monitor the pressure.

She's also scheduled for a spinal tap to see if there are any cancerous cells floating around in her spinal fluid. To treat the brain pressure they have put little Emma on diuretics to keep the fluid from building up. If that fails to control it, she will have a tube implanted behind her ear, run under her skin and divert the fluid into her stomach. Yuck. Let's hope they find a solution.

The family is resilient, and the Maltbie's are planning to have a busy Halloween weekend. Emma's in good spirits, and the family is positive that the prayers will see them thru. Please take a moment this weekend to pray for them.

--Bill