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.