Dakota's PCMC Visit 10/27/09

Yesterday was another full day at Primary Children's Hospital for Dakota. We started off with a very longer than usual commute to the hospital (because of the snowy weather and traffic). We made it there a little late, but luckily on time enough that we didn't mess things up too much. Dakota was quickly taken back to the room to prep for sedation through an IV for her MRI. She usually does not worry too much about the poke in the hand, but with this IV insertion she was a little more hesitant. I think all the pokes and prodding and shocks from the nerve conduction tests and the EMG earlier in the month "ruined" her long standing bravery with needles. She didn't cooperate as readily...she whimpered a little more (still no crying) and wouldn't hold her arm still. It didn't help that the first try in the left hand vein proved futile. Her rolling vein played hide and seek and the nurse kept wiggling the needle around and around to find it. Later, the needle was pulled out after the vein had clearly blown...only to tell Dakota that they would have to try again in the other hand. They had her sit on my lap (spider sitting) so that I could hug her through the process. The nurses then held on to her arm/hand outstretched behind me so that they could poke her in the right hand. That one went a lot smoother. She finally got to pick her prize from the treasure chest...the coveted big box of toys, books, jewelry, crayons, stuffed animals, etc. that only the "brave" children get to see. After much deliberation, she finally chose the small Ariel tin lunch box. We discussed many uses for the box and all the stuff she could hide in there...including candy, as the the sodium chloride solution was administered through the IV.

Soon, it was time for the "sleepy juice" (sedative). They gave her a different kind this time - one that would not "stick with them" as long and help them to recover a little better. It did not take her long this time to fall asleep. She was out cold just minutes after starting the meds. They wheeled her into the room and after we watched them get her all set up, we left for the cafeteria to hang out for about 40 minutes. Darin brought his lap top and I my book. I don't get much reading done during this time. Too many distractions, not only with all the people coming and going buy with in my own head. Pensive thoughts/questions about Dakota...What are they going to find? What are we going to learn? How PCMC has become such a part of our lives. That this is still just the beginning of her whole life living with this disease. Wondering if she dreams when she's in a medically induced sleep (probably not). Before I know it, I've only read a couple of pages and it's time to go back.

We arrived in the recovery room a little early. The radiologist had just stepped in for assessment and started talking Darin through the last part of Dakota's scan. He said the lump actually looked pretty good (as far as tumors go - ha, ha) and was quite "superficial" - meaning that even though it has now spread under her neck and has grown right up to her spine, the new growth has not infiltrated her muscles. It is sitting just under the skin and has not embedded itself deeper. Her head is clean. Her spine is clean. Good news.

We sat with Dakota while waiting for her to wake up. Watching her sleep so soundly, while softly stroking her sweet face is one of those cherished quiet moments that you wish you could somehow pause forever. Dakota is not normally a calm child; far from it. So, quiet moments like this don't come often. We were just relieved that the first part of her visit was almost complete. We still had a surgical consult coming up later in the afternoon. Dakota finally woke up, ate a Popsicle, some wafer crackers, and some juice.

Dakota after waking up from her sedation. She brought Sleepy with her again to the hospital and she is showing off her Ariel lunchbox.

After she was discharged, they found a wheelchair for her and a gave her a warm blanket. (It was freezing in the hospital, yesterday.) Even though she was still half asleep, she thought it was cool to ride around in style around the hospital. We visited the train on the south side where we met up with Aunt Holly. We then went the gift shop where Holly bought her a glitter ball that lights up. With still an hour and 20 minutes left until our next appointment, we went to the cafeteria to eat.

Dakota in her wheelchair, still quite groggy from the sedation meds, waiting for her food from "The Rainbow Cafe" (that she didn't eat much of).

The next appointment was one I had been dreading before the good news from the MRI. I didn't know what the protocol was going to be for a growing tumor. I feared surgery, knowing the complications involved. However, the consult turned out to be nothing more than a 'thanks for touching bases with us" kind of thing. There is nothing more they want to do right now. This is what we discussed:
#1 The tumor is growing, but so is she. Tumors do grow some, in proportion to the child's growth. (New information for me. I did not know that before.)
#2 It is not getting in the way of her muscle reactions. Her nerves are healthy. And her left arm and hand are functioning. (They did a few muscle tests on her yesterday, too.)
#3 Even though she does feel some pain with the tumor and it is growing slowly, the fact is, she is functioning normally now. And that far outweighs the discomfort, scarring, and nerve damage that would be experienced after surgery. "Why fix it, if it's not broken?" (quote from Dr. Randall)
#4 For a malignant tumor, it looks quite unremarkable. Meaning, it looks very good, no markers for cancer. "WHOO-HOO!" (quote from me).
#5 He reiterated that they do not like going in and taking these tumors out unless they ABSOLUTELY have to, only as a LAST RESORT. She is not in that state.
#6 We watch it. Instead of coming back for following up every year, it is now every six months after the next MRI. Although she is on the "watch-list" she is doing very well, as of this last visit.
#7 Dr. Randall told Dakota to not get any cuter! (I don't think that's possible; she's as cute as they come. But, of course, I'm biased.)

I guess all this info will be sent to Dr. Viskochil and we will wait to see if any more needs to be done now before our next visit in 6 months. I still don't know about the possibilities of using the drug "rapamycin" to shrink the tumor. We'll have to talk more with Dr. V about that. But, until then, Dakota can be as normal child as possible (barring that no new symptoms arise). I just hope the tumor doesn't grow into her spine. That no scoliosis decides to creep in. No optic nerve tumors appear. No tumors on her auditory nerves. (That's all the serious, stuff.) I am sure that she will have other little tumors (neurofibromas) pop up everywhere and anywhere, as some already have on her head and back. That is par for the course. I just don't want her to have the serious cases where they pop up in the hundreds all over her skin and face. She's too cute for that. But our will is not always God's will.

Heavenly Father has a plan for our little Dakota and we, in faith, will accept his will. Just as I was feeling the pressures and stresses of the situation yesterday morning on our ride up to the hospital, I was given a reminder from a small marquis in front of a christian church along Foothill Drive...a simple scripture lit up...

"Be still, and know that I am God." Psalm 46:10