Emmett had been in Texas for two weeks, planning to come home in 6 days. I struggled with Ivee and Brittney's health while he was gone. Ivee had bronchilitis the week before, and Brittney had aches and fever over the weekend that ended with vomiting for two days. I made an appointment for her to go to the doctor and get something to help her stop, so she would not dehydrate. I was a little early to the appointment, so just a moment down the road I stopped at Fred's to go in and get something, I think it was an outfit for Ivee since the weather was getting colder. She was buckled into her carseat and I sat it on top of the grocery cart like I had done with my other two kids when they were little. She was calm and good the whole time. As we were leaving the store, I moved to the front of the cart to throw something in a trash can. As I turned back to get more trash out of the cart, for no reason at all, I saw Ivee and her car seat about a foot from the ground (face down). All of a sudden my baby had hit the concrete face first. I freaked out!!! to say the least. I turned her seat over, horrified at what I would see. As I turned her over, she didn't move. I saw a scratch on her head that began to rise immediately. She then moved and began to cry. I ran to the car, got her in, ran a red light, and headed straight to the doctor's office where two of my friends who are doctors work. Dr. Lynn Porter, one of those friends, came in. I was on the phone with Emmett trying not to lose it. We had trouble getting her to want to stay awake. Lynn said she thought Ivee might have a slight concussion, so she would call Thomas Hospital (20 minutes away) so they would know we were coming.
I drove well, but fast to Thomas. I called Tony and asked him to help me with Brittney, who was still sick and trying to keep her mom calm. Tony called me back on the way to try to calm me down. I finally got to Thomas (30 minutes later). Greg Porter, Tony and Chad, and Angela came in after. Well, skip a few minutes. We got to the back and they sent us for a CAT scan. I stood by her side while they strapped her in. All of a sudden a piece and feeling came over me. Something inside me said, "She'll be fine from the fall, but they will find something else." I watched the monitors as they ran the scan, and I saw something I thought was strange, but then again, I've never seen a scan of the brain before. My friend Dr. Sammy Saleeb is the radiologist at Thomas, and it was his first day back from vacation. He called me in and asked if Ivee had any health problems. I said no. He asked if she could sit up. I said, no and that it had been bothering me lately that she couldn't being that she is over 7 months old, but no one else seemed worried about it. He showed me the spot that I had seen earlier, and said that it shouldn't be there and he wanted to do an MRI cause they are more detailed. Well, we'll make this shorter. We did the MRI, she slept all the way through it. Sammy came and told me that she would need to be transferred to Sacred Heart or USA C&W, and that we would need to talk to a Pediatric Neurosurgeon. Sammy called around and found Dr. Anthony Martino at USA. So, we transferred there. Hours later, Martino came into PICU, and he told me that he would want to do an MRI of her spine to see if anything was in there. He would also have to probably biopsy it to make sure of what it is. It is common of an epidermoid in that part of the head. That is a cyst. That would be the first on his list. Last on his list would be an infection, cause there would be more symptoms.
Emmett flew home in his Toyota Echo from Texas in 5 1/2 hours.
Tuesday they did an MRI, and Martino said it was a little more detailed than the one from Thomas. So he had Ivee scheduled for the 3rd surgery of the day on Wednesday. He would go in an remove all that he could and then biopsy it.
"Whoa...wait...this is all moving too fast!!!" Wednesday came. They took Ivee into surgery at 2:30 p.m. Over 30 people came to be with us during this time, and many people who couldn't called. We were told the surgery would last 3 to 4 hours. 5 hours later at 7:30 p.m. doctor Martino came out to talk to me and Emmett. Ivee had come through the surgery just fine. She had a tumor, that from the look of it favored a PNET. He informed us at that time that she would require chemotherapy, so we knew that from the look of the tumor, he knew it was malignant. The tumor had been wrapped around the nerves that control facial movements on the right side, her right eye, and swallowing. He left the nerves in tack, but they are still irritated, so there would be some problems with these thing. It was hard to hear, but Emmett and I knew God was in control.
(This is about 4 days after 1st surgery) To skip a bit, Ivee has been doing fine. She had her breathing tube out after just a day and half. That was really good. Her eyes were very, very crossed, and she can't "speak". It has gotten better but she is still hoarse. Her eyes look a whole lot better and she is focusing better now. The swelling is gone, and her wounds look good. She's been tied down to the bed so she won't pull other tubes out, but three days ago, she got free while they were putting a foley in to collect urine. She pulled her feeding tube out. They couldn't get another one in cause her stomach is closed up. So she hadn't eaten any nutrition for two days. She had surgery yesterday to put in a central line so that she can receive TPNs and Lipids for nutrition right now. Yes, this means she still can't swallow. She is taking to the pacifier now, and that is good. We'll just have to wait to do another swallowing test to see if she has progressed any further.
There have been a lot of issues since the surgery, but over all, she is progressing well.
Now for the diagnosis. It took 10 days to get an answer from Pathology. She has Anaplastic Ependymoma. It is an aggressive stage 3 cancer that affects the ventricle and lower back part of the brain, but also arise higher in the spinal cord. Usually kids with this cancer are diagnosed cause of vomiting, headache, and balance problems. This explained the reason she couldn't sit up. Also, it could explain the reason we thought she "Spit up" a lot. There were also times that she held her head funny, as if she was trying to relieve a lot of pressure. The signs were there, but no one would have run a CT scan for not sitting up. You can't ask a baby if their head hurts. So, if she had never fallen from that cart, we would have found the tumor, probably, too late. The surgeon, Martino, said that 2 months from now this would have been a different story with a much different outcome. Praise God she fell. Who would have ever thought I'd praise God for that.
Well, I'm going to try to finish quickly and talk more later.
This coming week, we'll run more test, and soon start Chemo. Dr. Emron, her oncologist is working on a plan, contacting all the oncologist in the North American region in the network. This cancer is rare, and ever more rare in babies Ivee's age. She'll probably be part of a clinical trial.
We covet everyone's prayers, and leave your comments of encouragement. I'll try to update everyday with her progress. WE love you ALL!!!!
