Thursday, May 22, 2008

We're certain we don't like uncertainty

You want the good news or the less than good news first? Well, given that I am the only one with the password the Caring Bridge Clubhouse, I chose that you get the less the good news first, as I would prefer to exit on a high note.
So, the less than good news...well, today's Dr visit pretty much stunk. Sorry to be quite so blunt, but sometimes, you gotta call em as ya sees em. We only see a Doc once every four weeks. The rest of the time, we just see nurses for chemo, barring problems or questions.

I finally got up the nerve to ask the prognosis question. The answer, UNCERTAIN. We talked about the likelyhood of the chemo working on the brain stem area tumors is UNCERTAIN, but doubtful. We discussed the fact that they are inoperable due to location. The next step, should one be required, and we are not there yet, would be radiation. This is not a pleasant thought for the brain stem of a 7 year old. We discussed the likelihood of neurosurgery having to put in a shunt due to potential hydrocephalus. That is UNCERTAIN, but likely. You seeing a theme here? Also, I brought up what I assumed was peripheral neuropathy in her feet. This is a common side effect of chemo. It basically kills the nerve ending and you lose some feeling in your extremities. Imagine your foot being asleep all the time, is basically how it feels. Well the Doc furrowed his brow at this. He says, 'Let's really keep an eye on that as we may want to move your MRI up sooner. There's a possibility that is progression in the brainstem area.' Ok, well that just sucks. Then I say, there have been a few very minor, yet still noticeable signs of what could, possibly be precocious puberty happening. Again, not uncommon in the world of Neurfibromatosis. To which he now raises an eyebrow along with his already furrowing a brow and says, 'I would like to go ahead and move your MRI up.' So, overall, a whole lot of uncertainty and concerns. That is your less than good news for this evening. I can't call it what I would really like to call it as this is a family show. Chemo upset her tummy and they had to piggyback the extra anti nausea med Ativan on to the end. So then she was drunk and goofy for the next several hours. I will take drunk, goofy and unable to really be trusted on her feet anyday over vomiting. At least she was happy and comfortable. Oh, and as an added bonus, she has two nasty mouth sores and lips that are so chapped they are bleeding frequently.

On to more uplifting and happy things, Mandy had a special visitor at chemo today....Kristin from Children's Dream Fund. It is a local organization that is the same as the Make a Wish Foundation. Mandy will be granted a wish! Would you like to know her wish? Come on, you know you would. She wishes to go to Hawaii and 1)learn to hula dance, 2) see a volcano and 3)swim with dolphins. Well, of course she does. This is oh-so-Mandy. I warned her that may be too big of a wish and so she came up with a second, backup option of the Atlantis resort in the Bahamas. She saw a commercial on TV for it.

Kristin from The Dream Fund was great! She brought Mandy a stuffed bear named Kimo. Kimo has a port in his chest, just like her. He even loses his hair and can 'regrow it', just like her. all made possible by the magic of Velcro. Mandy ADORES this bear and has accessed and deaccessed this poor guy's port and administered so much chemo to him that I fear I am headed for a malpractice suit. Kristin said Hawaii might be too big, but that she believed in dreaming big and was going to do all she could to make that happen for Mandy. Mandy is very excited as are the other kids at the possibility. So we shall see what happens.

As an interesting and sad observation today, when you put kids in extraordinary situations such as cancer, chemo, etc and ask them to basically become relatively comfortable with things that kids are never comfortable with, they become very, VERY married to their routine. She can handle it when it is the nurses she knows, doing things the way she is used to doing them. She flies through finger sticks, chemo, port accessing, etc like a pro now. That being said, one little alteration throws off her comfort level big time. Today, they had a different shape of needle for her finger stick. This unnerved Mandy to no end. It was NOT the right needle and it scared the bejeezers out of her. She got through it after much assuring that it was okay and would feel the same. I thought I was going to have to let them stick my finger, just to prove a point that it was okay. Miss Vicki, Mandy's favorite nurse, said that all the kids had been totally freaked out by the change in finger stick needles. Moral of the story, don't mess with these kids routines.

She is out of sorts tonight and really not feeling well. I gave her more Ativan at 9pm, when she was able to have more and hopefully that will help. Keep her in your prayers for an easy Friday.

Thanks as always for checking in on her. Love to all~

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