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

Thanks for the prayers folks! We are home now; got discharged last night. Fevers are still unexplained as all of the tests came back negative, so far. She is on various medications and I believe they are working. She seems to be feeling better today with no fevers. Hope the healing continues.

Back in the hospital again. Friday's labs were okay, but the high fevers continued. New vomiting and headaches started again Sunday night, which prompted a visit to the ER Monday morning. She was admitted yesterday (Monday) for observation and a battery of tests including labs and an MRI.

MRI shows enlarged ventricles in her brain due to excess fluid (hydrocephalus), which is causing the headaches and vomiting. Also shows a little spot we need to watch--pray that its not a new tumor.

Still trying to find out why she's had fevers for an entire month since surgery. We should be discharged today...hopefully. Other than that, she is in a happy mood today, but ready to go home. Please keep her in your thoughts.

Surgery #2 Update

(As of 2pm, Friday Sept. 17th)

Emma is out and in recovery room and doing well. All functions are good; no signs of cerebellar mutism (restricted speech) which often happens with this type of surgery. She is very dizzy which is direct result of small piece of cerebellum being removed. Her balance might be affected also. Both of these should hopefully resolve over time. Initial biopsy report on removed tissue is negative for cancer cells--it was probably scar tissue--this is good-one less area to worry about regarding future tumor regrowth. We are praying that dizzy/balance/blurred vision are short lived and not a longer term issue. Thanks for everyone's thoughts and prayers and please keep them coming.

--Mike
Sent via BlackBerry from T-Mobile

Post Surgery MRI News

Post surgical mri indicates existing tumor tissue (a small sliver) remaining on cerebellum directly across from brain stem. Surgeon will do surgery at 10 am friday to remove very small part of cerebellum that has tumor tissue stuck to it. Much shorter procedure (2-3 hours) less risky area to work on as compared to brain stem. Best to do it now than to wait. Please keep prayers rolling for Emma.

--Mike
Sent via BlackBerry from T-Mobile

Surgery Update

Emma is out of surgery doing well. About 5 hour surgery. Heavily sedated but speaking clear words. Limb movement is good. All visible tumor tissue removed will do mri in morning to verify. Eye control may be affected but what we can see looks not too severe. Please let people know prayers are working and thank you.

--Mike
Sent via BlackBerry from T-Mobile

Updated Email from Mike

Mike sent out this email to some work colleagues and I thought I would post it here. Sorry, I'm a little slower at composing blog post than he is at writing emails. The facts are in his email below.

---

From: Maltbie, Michael P.
Sent: Monday, September 13, 2010 10:57 PM
To: Will
Subject: Emma Maltbie
Importance: High

Will

I wanted to give you a heads up regarding Emma's status and request that you get this out/pass it on to the folks that would want to know.

Last Thursday, following one of Emma's routine MRI's - we were informed that her tumor had grown back. It is in the same spot (brain stem) and the same size (2 centimeters) as last time (Dec 2009). The positives are: it has not spread from the original tumor site and it that it is the same size as last time. The negatives are: it is showing accelerated growth characteristics (her MRI in June was clear) and that it has proven to be resistant to surgical resection. Emma will be going in for surgery Wednesday morning at 6 am. The time frame should be the same as last time - 7-9 hours of surgery, 2-3 nights in ICU , followed by a 7-9 day stay at TCH. Emma's "team" at TCH, due to the tumor's track record --is recommending some form of post-surgical radiation regiment as Emma's best chance of beating this tumor. We will be meeting with doctors from both Methodist (IMRT Radiation) and MD Anderson ( Proton Radiation). The challenge is that it has only been 2 yrs since the completion of her last radiation regiment- and the fact that the "target area" will be the brain stem - which would be at risk for damage from the radiation itself. We will be working with the team at TCH to explore various options including "phase 1/phase 2/clinical trials" that are currently taking place at other facilities.

Please keep Emma in your thoughts and prayers over the next few weeks.

Thanks,

Mike

Fwd: love you

I have a friend named Christie who is absolutely amazing in every way. Thank you for this, Christie. Her prayer for Emma is below.

---------- Forwarded message ----------
From: Christie
Date: Fri, Sep 10, 2010 at 10:46 PM
Subject: love you
To: Jayne M.


I just wanted to write you and tell you that I am thinking of you and you are such a blessing. Thank you for opening up to me and feeling comfortable to share your heart with me.

I'm praying for you: That you would have peace during this difficult time; That you would fall into God, that His presence would fill you; That you and Mike would feel the Holy Spirit during this period and that your marriage would strengthen; That you both would have courage, strength and wisdom to make any decisions needed to be made.

For Emma: That she would feel the Holy Spirit and be comforted; that her tumor would be removed completely and that she would have complete and total healing with no losses; peace and strength.

For her Doctors and Nurses: That they would have peace in the surgery room; that they would have warmth to comfort Emma; that God would send His divine wisdom upon them to treat her both during surgery and before and after; that God would fill them with His presence.

For your family: Overall peace, strength and comfort.

If you have any other things that you would like specifically prayed for, please let me know. If you want to share this list on FB or your blog, feel free. I've found that praying specifics leaves nothing uncovered from prayer.
I'll be putting in a prayer request for you guys at church this weekend to have the church pray over you.

Love you and love your amazing God-filled heart.

Be strong, and let your heart take courage, all you who hope in the Lord. Psalm 31:24

xxo
Christie

Day of Days

We had a scan today. Not good.

Emmy's tumor has recurred...again.

On the brain stem...again.

Same location...again.

I feel like I'm having deja vu...like there's a glitch in the Matrix. Same size as we saw in last year's September scan. I don't have much to say. I'm kind of still in shock. Super tired as I am completely emotionally drained. But I will have you know, I didn't cry. Which really means my head will explode by the middle of next week.

September Looming

Something about the events leading up to the day that didn't bode well with me. Maybe it was my Facebook post that mentioned how this was the one year anniversary of our September scan that found the last tumor. That statement made everyone post things on my wall that they normally wouldn't have, like "we're praying for you" etc, etc. This was not normal. I usually just get subtle comments on the thread, not entire wall posts.

Another thing was the weird scheduling. We book our MRI's about three months in advance, as well as the follow-ups with Oncology and Neurosurgery. Somehow we ended up with a neurosurgery follow-up immediately after the scan. Upon hearing this my mom was a little disturbed. "What does that mean? Do they know something we don't?" she asked. I hoped not. I made a call to the nurse to ask about scheduling it this way. She stated that this was pretty standard, and was something they do occasionally. I dismissed it as just a coincidence, and not a bad sign.

Then there was the actual scan. It was supposed to be an hour long. After an hour we came by the front desk to check and see if maybe we had missed being called back to the recovery area. No. Instead I get hit with "No, Emma's not ready yet. In fact, Dr. Jea just ordered another test. Seems he wasn't seeing what he wanted to see."

W...T...F???

Um, okay. What does that mean? I put it out of my mind; dismissing it as nothing. Just a thorough check, right? No. We later found that the doctor had ordered a myleogram (a spine scan) to check her spine for metastasis of the cancer. Emmy's scan was extended for 30 more minutes. Bad sign.

Mike had been roaming the halls, so I went to look for him to let him know that they ordered an additional test. The look on his face was not good. "I'm going to the chapel to pray," he says. Bad sign.

Deep Breath

Through this journey I have learned that if you don't get your MRI results right away, it might just be a bad, bad thing. Emma did great during her scan. Afterward, we immediately went to our meeting with Dr. Jea to get the results. We waited almost an hour. That is definitely not good. If you have to wait a while it generally means the doctors are discussing your case...and not in a good way.

The five of us waited in that tiny little room, everyone on edge, everyone anxious. My Dad had come to hear the results as well, so the room was packed. We were worried about Emma who hadn't eaten since the night before, as it was already past noon at this point. Mom went to get her a slice of pizza and the minute she left, the doctor entered the room.

Em was a little distracted, but when she realized it was Dr. Jea, she pretty much tackled him to give him a hug. Something she often does (our little linebacker). He seemed a little somber. He was still holding her in his arms when he looked up at me and asked "so have there been any complaints of headaches? Any vomiting, or nausea?"

I couldn't catch my breath. He turned to Mike and my Dad and said that Emma should probably leave the room. Oh God.

Dad took her out to spare her the news of the scan. Dr. Jea took a deep breath and said "I'm sorry. The scan was not good. It was not a clear scan."

It Is What It is

I can't remember exactly what he said after those words were spoken. All I knew is that I couldn't go through this again. Emma couldn't do this again. My poor, sweet baby! I could only take a few minutes and I had to leave the room. I had to find her. I had to hold her. I had so many emotions, but mostly I just wanted to throw up. It was physically a kick in the gut.

I went out to the waiting area and my dad knew it was bad by my reaction. I shook my head. "Go back in there, Dad. I can't do it." Emma was playing around and I immediately grabbed her and held her tight, kissing her head a thousand times, holding back the tears. I didn't want to let her go, I would've done it for hours, but she squirmed away.

We played a little hide and seek game through a giant dollhouse that was on display at the 9th floor waiting area. She giggled and peeked, and giggled and hid again. I gathered my emotions up and put my best face on. I marked the moment; making myself remember her little face and her laugh that very minute.

I kept looking around for my mom to make sure I intercepted her before she heard the news for herself. I wanted to buffer it a little. Too late. My mother came walking up, pizza in hand, tears pouring down her face. My poor mom. I hugged her tight and reassured her that we would fight this again. She sent me back inside to hear the rest.

Details

Long story short, the tumor is back. In only ten short months after her second surgery, cells had grown into a 2cm tumor. Somehow this seems bigger to me than the second recurrence. Yeah, okay...I won't panic right now. Nope. Our current game plan is to have surgery on Wednesday to remove the tumor. Maybe we'll follow it with a treatment later too.

I've mentioned before in some random previous post (or maybe not) that your prognosis is based on two things. The first is how successful the surgery is, the second is based on your follow-up treatment (eg: radiation or chemotherapy). In terms of surgery, "Gross total resection," or GTR, is ideal. The standard definition of gross total resection is the removal of more than or equal to 90% of a tumor as measured by the surgeon's observation, and not by a microscope. That is the key word--microscope. There is no way that you can completely surgically remove 100% of cancer cells. It just doesn't happen.

That's where follow up treatment comes along. After surgery, the standard protocol is to use either chemotherapy or radiation to zap any residual cells in the tumor bed. This (hopefully) ensures that any remaining cancer cells die and don't recur or spread. Certain tumors work better with certain treatment protocol.

In Emma's case, the first surgery in 2008 removed 99% of the tumor, leaving only a translucent, thin sliver that was attached to the brain stem. At 3 1/2 years old, she endured 32 treatments of radiation with daily sedation. Daily. General. Anesthesia. At age 3. Yuck.

Radiation only worked to stave off the cancer cells for a year. We found Em's second tumor recurrence in September of 2009 and went into surgery two months later in November. No follow up treatment after second surgery. Why? We were not far out enough from the last one; only 14 months. According to data, re-irradiating a child within 3-5 years from their last dosage of radiation will damage to the brain. Not right away either; late effects of radiation can last up to five years. Not something we were willing to do then, and not something we want to do now.

This is why we haven't done any follow-up treatments since last year's second tumor resection. We were just playing the "wait and see" game. On Monday, we meet with Dr. Su with oncology to discuss post-surgical treatment options for our daughter. I'm sure they will mention radiation again. Hopefully this time there will be some other alternative. Fingers crossed.

Hello, Kindergarten!

First day of school for Emma today. Kindergarten. She was very excited to say the least. Little sister Hannah started Pre-K today too. I have many mixed emotions. Mainly, I'm happy. Happy to see her healthy and content to go to Kindergarten.

I see a light at the end of the tunnel and it feels pretty good. I see a normal future ahead. We just have to pray that things are going to be good from here on out. The September scan is coming and it was on last year's September scan that we found that Emma's tumor recurred. That sucked. This year, our MRI appointment is scheduled two days after our original date. I won't lie, I am a bit anxious about the whole thing...then again I always am whenever there's a scan coming up. Nothing you can do but hold your breath and jump in.

Some "First Day of School" photos for you. Yeah, getting a decent photo of the two together these days is like pulling teeth.

Goodbye Ms. Ashley

Emma's Occupational Therapist got married on the 31st in a beautiful wedding ceremony. I was lucky enough to have been there. Even luckier to have photographed it. It was awesome. Ashley was gorgeous, effervescent. Bryan is such a charmer. It was a great wedding.

Somewhere between cutting the cake and bouquet toss, I found myself signing a pear and bawling my eyes out. See, they had pears as part of their theme. Little paper pears hung like Christmas ornaments on a small, potted live pear tree. You could sign a dedication to the couple on a paper pear and hang it. It was a fantastic idea.

I started writing mine and realized that we were really going to miss our Ms. Ashley. Ashley has been there from the start of Em's diagnosis and we saw her anywhere from daily to 3 times a week. She is patient, kind, attentive and funny, with a huge heart. She is a big part of Emma's life, mine too, part of our family. Ms. Ashley, I hope you have a wonderful, wonderful life. You deserve all the happiness in the world! Thank you for all of your love. We miss you.

Rockport 2010

Our yearly vacation to Rockport happened a little closer to school than we had wanted. This meant that trying to get the kids on a school sleeping schedule would be a nightmare. But the trip was all worth it. We had a wonderful time. Water, sand, sun, baby eating sand...you name it, we did it and had fun doing it. Emma and Hannah spent lots of time in the pool, befriended some ducks whom they named "Princess" and "Quacky." Can you guess which one Hannah named? Hint, its not "Quacky." I will update this post with some photos...after I process them of course--give me time.

Glasses

I almost forgot to mention that Em now has eyewear. Glasses. We picked out a retro style frame. Very cute. The eye surgery we did in July only corrected the misalignment (strabismus) on a vertical axis. Her horizontal alignment is still not great. To correct it, Em has to wear glasses, hopefully for only a little while. We meet with Dr. Edmond again in late September to see how she is progressing. I do see a difference, but Em can't stand wearing them. She puts them on the end of her nose and looks at you across the top like my mother does. Apple does not fall far from the tree. Ha! She is still so cute in them though. Don't you think?

Fwd: How God Works

The following is an actual email I sent to Mike.

---------- Forwarded message ----------
From: Jayne M.
Date: Tue, Jul 13, 2010 at 1:18 AM
Subject: How God Works
To: "M., Michael P."


Babe,

Just another example that God is talking to me and listening again.

Maybe I'm nuts, and inferring too much, but the way I see it, the coincidence is too big to ignore. I was praying in the car on my way back home, asking for guidance, apologizing for not praying often enough, praying to get my life back on track, and of course to heal Emma.

When I got settled in at Mom's house and checked Facebook, as I always do, I got a notification from the Ava Hunter group. So I checked it.

Ava Hunter is a little girl who's story I heard of somewhere along the way in my huge network of cancer-fighting, "Prayer Warrior" friends on the world wide web. I really can't remember exactly where I heard her name, but I started following the Facebook page that her family made for her. This group page was set up as a means for people to follow her fight, and pray for her. I added it to my Facebook pages to watch, but didn't do any further research on her story at the time. This was just a few weeks ago.

Ava is a 5 year old girl (coincidence #1) in Orlando, FL, that was just diagnosed with a Glioblastoma Multiforme brain tumor, or GBM. This is a major one, no known cures, very aggressive, doesn't respond to chemo or radiation at all. Senator Ted Kennedy had a GBM. Ava's was the size of a tangerine. I don't think it was a gross total resection. Her Facebook page talked about their recent diagnosis, which prompted me to do more research. I found that the dad, Josh, (coincidence #2) kept a blog that now documents Ava's journey.

So I started reading. And what I read amazed me.

Josh is the son of a pastor and is very spiritual. In reading his words, I got the message. It was like I could've written this myself. In fact, in some paragraphs, I found myself replacing Emma's name with Ava's, and ours for theirs, and it all still made sense. After a while, I realized that what I was seeing were God's words. Him telling me what I needed to hear, showing me what I needed to see. Truly amazing.

Josh writes: "That's why leaning on God makes most sense. I don't mean sitting idle. I mean trusting Him to lead us on the right path for Ava. I care little who tells me I'm nuts if I am following what God has told me. I don't ever hear an audible voice, but I expect Him to open the doors that need to be open and close the ones that should be closed. My promise is to walk through the open ones with Lisa as we pursue healing for Ava."

Replace Ava's name with Emma's, and read it again.

I clicked on a link on his blog somewhere and found myself on his wife, Lisa's blog. The last post was written almost a year ago, but struck me as so profound. It says: "Is God really listening? Should I pray only about serious issues? What should I talk to Him about? etc..."

Wow. Finally, in reading the rest of Josh's blog to the beginning of their journey, I found coincidence #3. Date of diagnosis: June 26, 2010; Date of surgery, June 27th, 2010.

Now try telling me that's not God talking.

If you are looking for Josh Hunter's blog: http://joshuajoelhunter.blogspot.com/

His wife Lisa's blog: http://lisalhunter.blogspot.com/

Newspaper -Orlando Sentinel- article on Ava: http://blogs.orlandosentinel.com/features-the-religion-world/2010/07/12/joel-hunters-granddaughter-has-brain-cancer/

Babe, please pray for this kid. The story is too close to home to ignore.

I love you so much!

JM

(Note: Sweet Ava, age 5, passed away after her 10 week battle with brain cancer on Monday, Sept. 6th, 2010.)

"God, please make me a mermaid."

Conversation while playing with Emmy in the toy room 6-26-10.

Em: "I wish I were a mermaid."

Me: "You ARE a mermaid!"

Em: "No, not a pretend one. I don't have a tail, Mommy. I want to be a real one."

Then whispering to herself, she says "God, please make me a mermaid."

I pretend not to hear to spare her any embarrassment. You see, Em is rather shy about being in the spotlight. Always has. Even at her dance recital at age 3, she was the only one that refused to perform.

Just thought I'd share that with you.

Sent via BlackBerry from T-Mobile

Lift Up Ellie

I'm doing it again.

The times when I have complete faith, total belief that Emma is healed and well, and will be just fine, in comes doubt.

Today's doubt comes in the form of sorrow. Sadness because a beautiful 8 year old girl named Ellie Potvin died today. She fought stage 4 Rhabdomyosarcoma with everything she had for two years. She was one of the little "cancer warriors" in my Twitter world that I pray for. Her family kept a site for her to chronicle her journey. It is so moving and inspirational, and today, so very painful to read. In the end, tumors filled her lungs and her entire chest. She passed peacefully and painlessly in the arms of her mother.

I have been off Twitter for a few weeks now, but this morning a friend posted on Facebook a prayer request for Ellie. I followed the link, and my heart broke.

Hitting Home

Every time a child dies from cancer, I think of Emma. Its hard not to. I know I shouldn't but sometimes I can't help it. "Is she next?" I wonder. Sometimes I think that maybe I think this way to prepare myself for the worst. So if it does happen, I won't be caught off guard. I know its a terrible way to think. I know. Just can't help it. When I read terrible things about other kids and their cancer battles, I start to cry. Then I go find Emma and hold her, all the while thanking the Lord that she is still here, and she is well.

On Monday, we lost two; Tony, age 15, and Jordan, age 7. Both from Ependymoma brain tumors; both saw nothing in their last MRI's. Then unexpectedly, there were tumors. In Jordan's case, lots of them. His Aunt Lynn writes "in a few short months it exploded into multiple tumors. I had no clue it would be so quick."

June Scans

Just so you know, Emma's MRI's were clean this month. After a sobering week in the hospital (somehow I contracted viral meningitis), I hit the ground running and took Em to a routine MRI appointment last Monday. Everything went fine, though she was a bit more difficult to wake up than usual in the PACU. Worry crossed my mind...just a bit of it.

The next day, I got a phone call from our oncologist, Dr. Su, who told me the scans looked "okay." What a relief! Our meeting with him on Thursday confirmed this as we viewed the scans with our own eyes. Thank you Lord!

Friday, the 25th, marks the two year anniversary of Emma's cancer diagnosis. I always get a little emotional at this time. What would our lives have been like if none of this had ever happened? God's plan was for us to cherish each other through this; not to take anything for granted. Em's disease has definitely made us stronger as a family, more appreciative of what has been given to us. I hope people who we have touched with our story can find this kind of peace for themselves as well.

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. ;)