Pray for Dakota

So, here's a little update on our latest family challenge...

Dakota has some lumps growing in the supraclavicular (clavicle) area to the left of her neck. We have been watching the area for quite some time. The area is distended (swollen) and is extremely tender. After some prodding from my family during their Thanksgiving stay, I took her to see her doctor the following Monday. He (and a med student) studied the area. I told them that with the history of lymphoma in our family, along with her previous history of possibly having neurofibromatosis, I felt it was something that shouldn't be ignored. After consulting with another doctor on the phone. Dr. Adams decided that it would be best to get blood tests and a CT scan of her neck. The scan was scheduled for Dec. 11th. I took her to the hospital that very day for the blood tests and we had those results before the scheduled scan date. The blood tests came back normal. Yay! We weren't so worried anymore. But we still had the scan coming up which would tell us more.

We arrived at the Utah Valley Regional Medical Center with Dakota at 8 a.m. on Thursday, Dec. 11th. Shortly after, we were greeted by the Pediatric team (support worker, nurse, and sedation nurse). They presented her with a gift bag full of fun toys and took her back to see the machine (CT) that would be taking her pictures and told her that she would have to lay very still while the big "ring" took pictures of her neck. Then, the took her into one of the prep rooms. Once in there, they gave her a stuffed doll (that someone had made) complete with a little hospital gown. She got to draw on her face, hair, belly-button, etc. She even did green finger- and toe-nails. The support nurse walked her through the whole process of getting an IV, since she would be getting "contrast" put into her system via IV (and possibly sedation if needed). The nurse helped her to tie the rubber band up high on the doll's arm, stick the IV needle in, put a special band-aid on it, and wrap the IV onto the arm with purple bandage tape. She talked her through the whole thing, and let her even blow the party whistle for the doll, in case it hurt. Then, it was Dakota's turn. The other nurse tried to put the IV in one hand, but it was too big and broke the vein. So they had to do it in the other hand. Dakota was a trooper. She whimpered a little, all the while blowing on her party blower. I am so proud of her. Next, they took her into the CT room, layed her on the bed, got the machine set up, and started the process. They shot the "contrast" through the IV and moved her into the machine. We watched and hoped that she would stay still long enough for them to get their pictures. She had practiced laying really still the night before for 30 seconds. We didn't want her to get sedated. Before we knew it...it was done! She was so brave and the nurses and other hospital staff were so impressed with her.

We left the hospital and drove to McDonald's to get her some breakfast. She had been fasting since the night before and was a hungry girl. She was scared to go to McDonald's because she thought Ronald McDonald would be there. The last time we went to McDonald's, both Ronald and Cosmo the BYU Cougar were there and she was afraid. We laughed at the fact that she just went through a considerably traumatic situation at the hospital complete with one failed IV insert with her brave game face...yet, she was scared to go to McDonald's...go figure. We took her to McDonald's anyway. She had a lovely breakfast and had the whole playground to herself.

As we were driving home from McDonald's, we got a call from the hospital. The radiologists had looked at her scans and wanted more pictures. We were ordered back for an ultrasound. We did an about-face and headed back to the hospital. After we waited a while, Dr. Wendell, the radiologist, did the ultrasound. He didn't find what he was looking for. Apparently, he was looking for a blue or red color to show up in the lumps, showing something lymphatic in nature. But since those colors were not present, it was not what he thought and still was not sure what it was. He through so many medical terms around and we understood none of it. He did say something about one of the lumps being "tubular" in nature, but said that was not a sure sign of anything. Neurofibromas can present themselves tubular, but not always. He said something about a vascular malformation, but again, so many words flying around...we needed a translator there. He suggested we get an MRI of the lumps and meet with the specialists up at Primary Children's Hospital. He would send his review and recommendations (including the names of two doctors at Primary Children's) to Dakota's pediatrician.

Darin, being a concerned parent, has been pro-active calling the doctor's office every day for any news. We finally got word from her pediatrician on Monday night. He had received the CT report, but nothing about the ultrasound. So, we told him what the radiologist told us. He, at first, said that we just needed to get her in with a surgeon a.s.a.p. to get the lumps out. But then later in the conversation, he agreed that we better get a good picture of the lumps first so that we know what we're dealing with before we get inside. It was our understanding that the radiologist was going to send us to Primary Children's for the MRI, because then, we'd be in the "system" ready to go with any specialists (neurologists) assigned. And that they were going to try to fit us in on Friday or Monday as to not interfere with our holiday plans. However, tonight, we got a call from the pediatric nurse informing us of a scheduled MRI for the morning of Dec. 23rd at Utah Valley. I will have to call tomorrow to confirm that that is what I heard. We were planning to leave for our Christmas vacation in Las Vegas that day. Now, we will have to wait and see. We don't know if they will need us to stick around our not.

Not knowing what is happening inside our little Dakota's body is difficult. We went through this once before when she turned a year old. The brown speckling all over her body, the cafe au lait spots, and slow development as a baby, were all tell-tale signs of Neurofibromatosis. But the MRI scan of her head showed nothing. So we were told she didn't have it. I was later informed that I would still have to watch her...just because she doesn't have it now, doesn't mean it won't show up later in life. I have been watching...and with these lumps now growing under her skin by her neck...I am now worrying. We don't know anything, yet. We don't think it's cancer, because the blood tests came back normal, but you never know. If it is neurofibromatosis, I will just pray that she doesn't have a severe case of it. But whatever it is, we will accept it as God's will and will move forward. Until then, we try not to get to "worked up" thinking about all the "what if's". Your imagination can really upset you at a time like this.

As of now, Dakota is happy (although sick with a sinus issue) and doesn't know anything more than the fact that her neck hurts when you touch it and they have to take some more pictures of it.

Sorry, if none of this made sense. I am sick (bad head cold), tired, overwhelmed, and them some.

Please keep Dakota in your prayers. If you attend the temple, put her name on the prayer rolls. We need all the extra help your prayers can offer. Thank you! And we'll keep you posted.

Dakota with her IV doll. I accidentally spilled water on it so the marker
smeared all over. Sorry, Dakota.