It's Never Too Late For Thank You

So it's been a few weeks since the awesome Benefit Dinner was thrown for Emma on the 1st of November. And I have to apologize for not posting a public "thank you" immediately.

Truth is I was waiting for Mike to hand over the speech he gave so I can transpose it. Though he had most of it written down, his prologue was from the hip and I wanted to include that too. I should've known not to wait on a busy husband.

So anyhow, THANK YOU. Thanks to everyone who attended and supported us. Thanks to those that met for weeks in planning, and worked so hard at the event. Thanks to those that donated items, funds, time or talent to make the event a success and a blast to attend. I would thank each individual contributor, but I'm not sure who did what.

Big Audience
A few days before the Benefit Dinner, I was prepping Emma so that she wouldn't be overwhelmed by the event. In the past, she has had a tendency to freak out when the "Happy Birthday Song" is sung during parties. "Too loud!" she would say, covering her ears and crying. This was the case no matter whose birthday it was.

So I tried to prepare her for the Benefit by telling her that we were going to have a big party for her. The conversation went like this:

Me: Hey Em, pretty soon we are going to have a big party for you, and all of your friends will be there.

Emma: Why? Is it my birthday?

Me: No, not yet. We just want to celebrate that you are getting better, that's all.

Emma: Oh. Will there be a big audience there?

Me: Well, sort of. We are going to see your friends, and teachers, and therapists, and neighborhood people. Everyone.

Emma: Oh. (She pauses to think for a minute.) Uh, sorry Mommy, I think I'm going to be tired that day.

Fortunately for us, she wasn't. No shyness--which I totally expected--and no fatigue. She was so happy and had so much fun at the benefit. She gave everyone a warm hug and ran around in circles playing "tag" with her little buddies. She and Hannah also tormented the poor balloon clowns and face painters the entire night.

Unfortunately, I was a bit too busy eating or chatting away with friends and neighbors that I didn't get to photograph my own event. Luckily, a few people have sent me their photos which I am posting here. If you took a few pics, please email them to me so I can include them in my keepsakes and post them to the blog. Thanks so much!!

Emma entranced either the live music acts (here and here) or the balloon clowns--I'm not sure which one. The following photos by Alisha Cunningham.

Mike's speech.

Holly on the phone.

The Cunninghams have fun.

Hannah's little partner in crime, Kat De Jong.

Andrew Karnavas plays for the crowd (not pictured, lol.)

Diane with the face painters.

Heather and Kate the Princess.

The Galindo's and friends.

Will and Louie taking a break.

Kristi and Noah partying down.

Laura and friends help with the food.

Little Katie gets her face painted.

The clowns were a huge hit!

This is our family on Halloween night. Photo by Alisha Cunningham. Thanks Alisha!

Emma with good friends Kylie and Clare. Photo by Mrs. Zugheri (Will's mom).

Speaking From the Heart
To avoid waiting yet another few weeks, I have decided to just blog the part of Mike's speech that was written. Sorry folks, you don't get to re-live his humor this time.

One day a storm came ripping through our lives, flipping everything upside down and knocking out our power. Getting through it took all the strength we had and we couldn't have done it without the support of our family and friends. Then three months later, (Hurricane) Ike came through Houston.

Early this summer, when life was "normal"--before "everything" happened--we never could've imagined that we would be tested by two very huge, very different types of storms rolling over our lives in the same few months.

Since Emma was diagnosed just over four months ago, time has taken on a surreal slowness and everything has been amplified: the love, the fear, the days, the minutes, the moments and the milestones.

As much as all of that, our deep appreciation and love for friends and family has grown, strengthened and solidified.

I am truly the luckiest man alive. Blessed with a beautiful, strong, amazing wife, three gorgeous, happy, magical daughters, a loving family and the most incredible, most unbelievably caring and generous group of friends, neighbors and extended family anyone could ever ask for.

You are the source of our strength and our positive attitude. You are the support and foundation that on those darkest days has kept us, and keeps us, from sinking into the quicksand of confusion and despair. You have literally and metaphorically been our shelter through these storms and we absolutely could not have made it this far without all of you.

Speaking on behalf of Emma, Hannah, Maysie, Jayne, myself and the entire family, we have been truly touched and humbled by the outpouring of prayers and support. We thank you with all of our heart.

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.