Happy Halloween!

Just wanted to say Happy Halloween from our little cheerleading squad. (If you have enough daughters, you can have one of your own too!) The costumes were Daddy's idea.

We are grateful and excited about the benefit dinner for Emma tomorrow! We are looking forward to seeing all of our family and friends and to thank those who worked so hard on putting it all together, and also to those attending. I will be a wonderful party and a great way to celebrate the good news of her recent MRI. We hope to see you all there!

Go Horns!

Happy, Happy, Joy, Joy

Wednesday we met with Dr. Jack Su for our six week follow up and MRI results for Emma. I think I'm losing it. Stupid me forgot to ask the nurses after the MRI on Tuesday to leave the "noodle" in her port-a-cath. Emma calls it a "noodle" when her port is accessed. This means they stick a needle with a tube attached to it to administer anesthesia and other medicines.

They usually leave the needle and tubing in place until all procedures are done and don't recommend poking her more than once every few days. There is more risk for infection if they do. When she went into recovery, I had the nurse remove it not realizing that they were going to draw blood for labs the next day for our visit with Dr. Su.

I was really fretting about Emma getting a needle in the arm. I knew she would not take kindly to it, so I did what I had to do and put numbing cream inside each crook of her elbow. I put cream on her port too, just in case. I hoped for the best.

When you first get to the Cancer Center at Texas Children's Hospital, you sign in and get a pager. The pager is for the phlebotomy lab, also known as "Band Aid Junction." This is where you will meet the nicest phlebotomists anywhere. They are very gentle and patient--great people.

The order for Emma that morning was to draw blood from the vein. Oh no. The nurse asked her if she was okay with that and surprisingly, she agreed to it. Until of course the butterfly needle came out. Still sitting in my lap, with a blue rubber band tied to her arm to expose the veins, she turns to me and says with this sad little face, "Mommy, I don't want that." My heart broke as I assured her it wouldn't hurt. I covered her eyes with my hand and told her not to look, praying that the cream had done it's job and she wouldn't feel the sting of the needle. The nurse counted to three and Emma took a breath. To my astonishment, everything was fine. Thank you God! She didn't feel a thing and was so proud of herself. I was proud of her too.

Drawing Blood
An aside: One of the few times I clearly remember crying and feeling so heartbroken at my daughter's pain was the day of the surgery back in June. It was 6 a.m. and Emma was still asleep. A nurse came in to draw blood--again. This was about the thousandth time. And I was so emotional over it.

They had done countless blood draws over the past two days that we were there. Emma's veins are hard to find apparently. In a 48 hour period, they had poked her twice in each arm, once on the hand, twice in each foot, and once on the wrist. At some point she had two I.V.'s inserted into each little arm. And the poking was never quite successful the first time the needle was inserted. They would have to stick it in and dig around for a vein. It was no wonder she was so scared of needles.

So the morning of the surgery, she was sleeping so soundly, finally. I had to wake her up so they could do another blood draw. How would you like to wake up to that? I held her in my arms and whispered for her to wake up. I told her the nurse was here to take some blood. Emma was really groggy and barely awake. But when the needle went in, her little body lurched in pain and she let out a faint cry. Then the crying became louder. I lost it. I tried to be so strong for her, and here--on surgery day--I had lost it. My poor little child. That was a tough day. I don't think I've told that story before.

Back to the MRI
Sorry about getting sidetracked there. So Em's lab work was done and we were sent out to the waiting area to get called back to see our oncologist. We waited for quite a while and by the time we saw him, I had almost forgotten why we were there. Oh yeah, the MRI!

The first thing Dr. Su said when he came in was "the scan looks good, but there is still an area we need to monitor." WHAT??? Holy cow! So NOT what I wanted to hear. But there was good news.

Emma's six week, post-radiation MRI looked good. There was a spot that the doctors saw that they needed to watch over, but according to them, it is really nothing for us to worry about. The spot they saw was indiscernible, but likely to NOT be tumor. It was probably what Dr. Su called "blood product" meaning clots, scar tissue, or left over blood from the surgery. Over time, the area should heal and diminish and will be checked in the next MRI scan--scheduled for January 2009.

So is she "cancer-free?" I don't know how to really answer that. According to Dr. Su, yes in the fact that her tumor has been removed and she has received radiation therapy. But really "cancer-free?" I think we will be able to say for sure after a few more MRI's come out clean. For this we pray. Emma gets an MRI every three months for the first year (or two, I can't remember), then it goes to longer terms until they see at least five years of clean scans. Sounds like a plan to me.

As for the rest of the check up, Emma still is not gaining weight. She has lost whatever weight she had gained from the steroids administered during surgery, and was back to her original weight before surgery. A total of four pounds. I guess the french fries are not working well enough. We had a milkshake phase, but she is over that now. I need to find another fattening food to interest her with. But truth be told, no matter what it is, she just won't eat much--with the exception of the Cuban Chicken Plate from El Rey, her latest favorite.

I asked about the fatigue that she always feels. Poor Emmy gets so easily tired. Apparently, we are still dealing with the effects of radiation. Six weeks out and still that. But according to Dr. Su, it sometimes takes 6-8 weeks (or more) to see the symptoms pass. I'm still waiting to see her back to her spunky, vibrant self.

The next day we met with Dr. Andrew Jea, our awesome neurosurgeon, who checked her out. Dr. Jea was really happy with how Emma's recovery was coming along. He reassured us that the spot they saw on the MRI was in fact NOT the one percent (1%) of tumor left behind on the brain stem. Whew! I was worried about that one. The area of tumor on the brain stem was up high, and this spot--blood product--was somewhere on the bottom of the tumor bed. Yay! Indeed some good news.

Mike asked Dr. Jea how long he suspected the tumor was in Emma's brain for. He assumed that it might have been there since birth, growing right along with her brain. As she grew, the brain learned to "work around" the tumor. Amazing. This gave me complete hope, more than I had felt in a while. Somehow, I got my answers and I now feel relieved.

Rejoice
So really, please give yourself a pat on the back for praying so hard for our Emma! We gather our strength as a family from all of the love, support and prayers for her healing. Thank you so much. Please continue to send some good thoughts and prayers our way!

What's next? I'm not really too sure. We still continue with her therapy appointments twice a week for now. Emma's next MRI is scheduled in January, so hopefully we will have a good holiday season. Hopefully we'll be back in our house by then. Yes, yes, we are still living at my Mom's house. It has been a super slow process to get our home repaired. Day by day, I guess. Day by day.

Deja Vu

It's 4 a.m. and I can't sleep. The anxiety that I had been feeling for the past week has finally peaked into insomnia. Emma's MRI scan is in a few hours and I have been a wreck all day long. Wish us luck.

Fast Forward
Ok, so now the day is done and I'm feeling much better, albeit exhausted. I was up since 4 a.m. this morning and we had to be at the hospital by 6:15 a.m. to get her checked in for her MRI. I think 6 a.m. is early even by hospital standards. We were the firsts ones there at the 4th floor of the CCC at Texas Children's. No breakfast for Emma as she would be sedated again and any food in her tummy was not allowed for the procedure.

The entire process was total deja vu. Of course it would be, right? I mean the diagnosis was only in this past June and we were in the same hospital. We had the same departments, same nurses, same waiting rooms, same MRI techs, even the same bed in the recovery room. It was like we were reliving it all over again.

Our nurse practitioner actually remembered Emmy who was really scared while waiting for the MRI. The "real" Emma is hardly quiet and shy. The nurse commented on her shyness saying that of course she'd act that way as she remembered the commotion from the last time she was there.

I felt a knot in my stomach the whole time and so did Mike. I think the consult with the anesthesiologist was the worst; it was the same, dreary room we sat in after Emma's heartbreaking diagnosis. It made us really nervous and emotional. The only thing we were hoping for was a different outcome. We would get results the the next day.

Emma sailed through the MRI with no problems. Having been sedated through all of radiation therapy, I thought she would wake up really grumpy and terrible as she always had. But this time she was calm and happy when she awoke. A good sign of things to come.

By 10 a.m. we were done at TCH and visiting our old friends at The Methodist Hospital to follow up with Dr. Paulino. I don't think Emma's ever actually met Dr. Paulino--she's always been asleep when he comes by. Emma was thrilled to see Ms. Peggy, our PACU nurse. And when she met Dr. Paulino, she showed off how well she could walk and practiced her comic abilities. It was a very short visit, and really nice to see them. Dr. Paulino was happy that Em was doing so well, albeit still tired. With the day behind us, we headed home to wait for the next day's appointment with our super-oncologist, Dr. Jack Su and the results of Emma's six week MRI.

Radio Song

On Tuesday the 14th, we were interviewed for a segment on Texas Children's Hospital's Annual Cure Kids' Cancer Radiothon. It's an annual fundraising event for the TCH Cancer Center hosted by Cox Radio Network. Last year they raised $2.1 million for the hospital. Very cool.

We met 93Q Country's Cactus Jack and Paul Christy from 107.5 KHits. They hit it off pretty well with Mike, who got there before Emma and I did. They were really great guys, easy to talk to and lots of fun. Mike did most of the talking though. We told them Emma's story from the beginning, recounting all of the ugly, sad facts.

At first, Em got a kick out of being interviewed, but it got old really fast for her. She was pretty shy most of the time. I tried to appease her squirming by bringing out some paper and colored pencils which ended up rolling around the table most of the time. Probably not great during a radio interview. Mike got a little teary-eyed re-telling the story, for me it was just hard to breathe.

I'm not sure when the Radiothon will air, but it will be sometime in December. I will keep you posted and maybe you can tune into hear our little "DJ Emmy."

Party On!

For all of you wondering about what ever happened to Emma's Benefit Dinner that was scheduled in September, I'm happy to announce that we have a new date!

Please join us for a big party for Emma on Saturday, November 1st from 4pm to 7pm at St. Rose of Lima Catholic Church (map here). Each $15 admission includes an italian Dinner catered by Lomonte's Italian Restaurant. There will be dancing and live music as well as a silent auction for some awesome items. Please see this old blog post for more information. We really hope to see you there!

Going Nowhere

It's been more than a week since we had power restored to the house, and still nothing. We got reconnected on Friday, the 10th, and somehow nothing has been done to the house. Still living at my Mom's...everything still the same. Super-frustrating.

28 days without power; wow. Thank God we weren't living there, could you imagine? I give kudos to those people who went for weeks without power, living on generators and no television and with kids, no less. Like survival camp where you try not to eat your young. Ha ha.

Emma is doing well. Every day is different, sometimes better, sometimes worse. She still has balance issues. These days what I've noticed is her memory skipping. We reminisce about things and people we know, and somewhere she'll forget the details. Weird. I know she's just a kid, almost four, but she used to be really on top of things like that. I just chalk it up to fatigue and hope that is all it is.

It's been a long 6 weeks since Emma completed radiation therapy. Our lives have been completely upside down. I recently realized that it was only nine days after completing radiation that Hurricane Ike damaged our house and changed our lives again. When it rains, it pours.

I've been stressing out over the upcoming MRI on Tuesday, October 21st. Please pray that Emma's scan comes out clean and no further tumors are found. Then we can call her "cancer-free" and after three years of clean scans, she will officially be in "remission." Hope and pray.

Pick a Pumpkin, Not Your Nose
We took our annual family outing to the pumpkin patch on Saturday afternoon. The kids were so ecstatic to go and they had so much fun. First thing on my list was trying to get photos of Emma and Hannah on pumpkins. They were not the most willing of participants, so I took what I could get.

They befriended a goat inside a mini petting zoo and would take hay from bales to feed him--poor goat; I'm sure he was so stuffed. There was also an area for inflatable slides and an inflatable bounce house from which Hannah would not part with. At the end of the day, we picked out two large pumpkins--one to symbolize each parent, two small ones for each child and a dozen mini ones to decorate with. We usually carve our jack-o-lanterns to look like each of us to form a "pumpkin family"as Emma calls it. Photos for your viewing enjoyment:

Photo opportunity on a bale of hay. Very difficult to get.

Peek-a-boo pig.
Hannah, the speed-demon, running with hay to feed the goat.
"Mmm, yummy."


Barefoot pumpkin climber.
Hannah down the slide.
Emma's hundreth time down the slide.
Fighting over who gets to pull the wagon. In the end, they each had one. Note the heavy load of pumpkins in the wagon. Ha ha!
Finally on the road home bearing goods.
Eww. Pick your pumpkin, not your nose.
That's better.

Still No Power

While the rest of the world and most of Houston has finally gotten their power back, I am sad to report that we still do not have ours! We are still living at my Mom's house, waiting for the lights to come on, for our home to dry out and magically smell better. Don't know when that is happening.

The power situation is slowly getting resolved though. We've had an electrician come out for the last five days to work on our power outage. This includes installing a whole new circuit breaker box, power mast on the roof and rewiring stuff, etc. The box was so fried, he said we were lucky our house didn't burn down. Whew!

(Oh, and by the way, thanks to our awesome neighbors who have helped us in the recovery process of our home. Thanks so much!)

Since it took us a while to pull carpets out, the situation at our house is pretty gross and moldy. And its a wreck since we've had to move everything from the dining room (also used as a play room) into other areas of the house. Dark, totally disorganized and musty from lack of air circulation...ugh!

But it will get better. We are slowly working on things. The electrician is finished, the inspector has approved it, and the power company is coming this week. Hooray! And all in good timing since Emma has been asking, almost daily, if we could go home soon. I feel so bad for her. But I know it will get better. Right?

Back to Dance
Today we took Emma to get a haircut, finally. I've been hesitant to do it since her hair is so thin already, but it has been looking quite stringy lately. Her hair also falls into her eyes a lot, which my Mom swears is the reason why she is always falling down. I don't know about that. Might have more to do with double vision and balance issues, but a haircut couldn't hurt. So we gave her a cute little bob with bangs. See photos:

Above: Harlow and Emmy
Above: "Dance Pals" Amelia, Harlow and Emmy

Emma and I were able to go dance class today and see our friends for the first time in a long while. She did really well, and didn't fall down much until she was playing tag with her ballerina buddies. Tag is such a tough contact sport, isn't it? I was really happy that we were able to go. A little nice normalcy, finally.

Our therapy sessions (PT, OT and Speech) have now been moved to only twice a week, so that helps with getting her back into her old life. We are figuring out a school schedule and will hopefully resume it this week. She is still really fatigued and doesn't have much of an appetite, so that still worries me. The other thing is her sleeping habits, or lack thereof. She takes up to 2 hours to go down at night. Constantly tossing and turning, it's really heartbreaking and a little annoying, truthfully. Especially when I'm lying in bed with her trying to get her to sleep.

Chili's Fights Cancer
I totally forgot to post last night, so I hope you had a chance to participate. I'm such a jerk for not reminding everyone. Doh!

Today, Monday, September 29th, Chili's restaurants nationwide were campaigning to raise funds to fight childhood cancer. Yay! For one day only, today, they were donating 100% of their proceeds to St. Jude's Children's Research Hospital, the number 1 pediatric cancer hospital in the country, to help find a cure. That is a pretty big deal. When was the last time you heard of a huge national chain of anything contributing 100%?

We had dinner there and I was sad to see that it was really empty. I asked the hostess if they were busy today at all, and she said it was totally dead. I hope other Chili's nationwide were busier than the one I was at. Next year I'm going to invite everyone for a big dinner event to show our support. Doesn't a margarita sound nice?

Rescheduled Dinner
Finally, I hope you all were not too dissappointed at not being able to go to Emma's Benefit Dinner at St. Rose this past Sunday. It was postponed due to Hurricane Ike and power outages. We still do not have a date set as of yet, but it will likely be early November.

It should be a rockin' event. I've heard the auction is not to be missed either. I will update you with more info as it comes. Thanks for hanging in with us.