Long day yesterday both physically and emotionally. Just when we thought Lauren was coming home from the hospital, we got the call that radiology can take Lauren NOW! Granny, Marissa, and Finlay were on the way there thinking they were going to pick up Hilary and Lauren. I was still at work and headed straight out the door to CHLA. When I got there, Lauren was already in the machine. So I met up with the family at McDonalds, which in located in the middle of the hospital. This is the only place to eat that visitors can go (they can no longer go to the cafeteria due to H1N1 safety precautions). This was literally my 15th McD's meal in 7 days, no wonder Lauren doesn't like to eat at McDonald's anymore.
Lauren came out of sedation okay. Normally she's a little goofy and silly when she wakes up, which we heard Propofol can cause. But this time she was very groggy and a little crabby. Normally Dr. Finlay reads Lauren's MRI pretty quickly, but unfortunately, Dr. Finlay is on vacation in Paraguay, which I heard he might have a vineyard there and won't be back for another two weeks. I contacted our coordinator Anna and Dr. Brown (who is working under Dr. Finlay on a one year program) via email to let them know Lauren MRI was done. Usually we'd go to the day hospital and Dr. Finlay would come bursting into the room and tell us how great her MRI was and how happy he was. This time it seemed a little different, it almost seemed like people were avoiding us. Of course with all the issues Lauren has been having, eyes locked, dizzy spells, my mind was wandering and I was beginning to think the worst.
When Dr. Dhal (Dr. Finlay's partner) finally came into Lauren's room and motioned me outside, my stomach sank and I could feel my breath becoming shallower and quicker. I told Lauren I'd be right back (Hil was with granny, Marissa and Finlay). Dr. Dhal, who I was told didn't sugar coat things, just came right out and said, when compared to the previous MRI, he thinks the tumor grew 2-3 mm (hard to tell exactly because he felt the angle was a little different). There were also signs of bleeding, which means we'll have to discontinue Avastin (chemo) known to cause bleeding. There was also another area of great concern. He said that the radiologist didn't take a spectroscopy shot because apparently they cannot do spectroscopy on the entire tumor, but just take samples (not sure if they are random or not) shots of different area. So Dr. Dhal recommended that Lauren go back down for another MRI. This time they thought it would only take 15 minutes or so, and Lauren said she could do it and didn't need to be sedated. So once again we were placed on the waiting list for that day.
Around 5 pm, we got call that radiology had an opening. So we rushed down to radiology. When we got there Hilary noticed the front of Lauren's shirt was soaked. The needle in her port must have came out a little, in fact she complained earlier in the day that her port hurt. The nurse examined it and didn't notice anything. We then noticed her upper chest was extremely puffy. All of the IV fluid and antibiotics were being pumped into her body and not her veins, and it was leaking out of her port access area. When they took off the bandage to examine the area, the needle popped out, usually you have to pull it out. What a mess. They needed to re-access her to flush the port and we had radiology pacing back and forth waiting. Normally whenever you have to re-access the port, they just find the quarter size port and push the needle back into it. But this time, since the fluid was being pumped into her chest, her chest was extremely swollen and they could barely feel the port, in fact they were not 100% they were feeling it at all. Her port is located on her sternum (which apparently is unusual, they are usually placed in the chest near the arm pit). Lauren, being the trooper that she is, just laid there while they were pressing down on her chest trying to find her port. When they asked her if it hurt she just said, "yes." As they pushed, normally blood comes out of the needle hole where she was accessed, however, since her chest was filled with IV, instead of blood oozing out, water (saline) was oozing out. Our nurse had to call another nurse down from our floor (radiology nurses are not as experienced accessing ports as the oncology nurses are). So we had two sets of hands pushing down on Lauren's chest trying to figure out were her port was, the whole time Lauren lay absolutely still. The only thing she was doing was grimacing because it hurt. I finally asked Lauren, can you feel your port when they press down? She said yes.
With Lauren's help, the nurses finally felt they knew where the port was and decided to go for it. Normally they use a 1-inch needle to access her port, but since her chest was so swollen they used a 1-1/2 inch needle. It was hard to watch when they plunged the needle into her chest not knowing if they were going to hit the port or her sternum. But the needle stopped and Lauren didn't yell out in pain. Bulls-eye.
It took a few anxious minutes of pushing and pulling to finally get blood to start coming out, which is needed to have a successful access. She was now ready to go into the MRI. Well, as soon as she went pee one last time. She always needs to pee one last time before she gets an MRI. She wet herself once while in the MRI and woke up with a diaper, which was a very dramatic and disturbing experience for her.
Once in the MRI room, she laid down with no problem. While the nurses were trying to re-access her, the radiologist had asked her if she wanted to watch a movie while she was getting the MRI, which she did. She picked Enchanted. So the movies was all set to go. They fitted her with a hairnet, put on special headphones, and special goggles with the movie screens in them. It's a pretty awesome set up. With everything on, she looked like a astronaut. As she was being loaded into the machine she yelled out something, they stopped and asked her what, she said, "You need to hit play (to start the movie)." I stayed in the room while they did the MRI. They gave me ear plugs because of how loud the machine was. The radiologist told me this was the loudest and most powerful MRI the hospital had. When the machine started up, it was loud. I both sat and paced in the room keeping an eye on her, she barely moved a muscle. And it didn't take 15 minutes like they said, it was more like 35 minutes. She did awesome. When she got out, she said she saw more of the movie than she thought she'd see and she also said that that was the loudest machine she had ever heard.
After another long wait, Dr. Brown (Finlay's apprentice) came in around 8 pm and said that the specialist was here and that he'll read the scan first thing in the morning. He was kind enough to take us to his office and show us the MRI. It was late and I'm sure he wanted to go home. This was the first time I looked at her MRI since May or June of 2008. I know a lot of people in our situation that always look at it and take a copy of it, but for me and Hilary, it's too hard to do that. Whenever I see that mass in her brain, it looks like pure evil. And all I feel towards it is anger and rage. Looking at the enhancement (area of concern) and comparing it with the previous MRI, you can definitely see a difference. This enhancement can either be dying tissue, or the tumor trying to change into a higher grade (more aggressive). While Hilary is telling herself that the area is dying tissue, I'm taking a different approach. I've seen the changes in Lauren's demeanor over the past few months (less outgoing and talkative), no appetite, and dizzy spells. And now knowing the tumor has gotten bigger, I am assuming the worst, that the tumor is active again. Is this the right attitude to have? Who knows. I do know that it's mostly a defense mechanism and obviously I am hoping that I am wrong and everybody yells at me for having little faith. But just because I don't have hope that the tumor is dead doesn't mean I have given up hope. We still have options. There are other chemos. We can go back on Temador, which I think was affective, but may have caused her pancreatitis, which we never really figured out. Nobody said this was going to be easy. And Lauren is a fighter.
The Nihei's: Our Story
On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
Thursday, January 28, 2010
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