Saturday, May 31, 2008

Feeling pretty good

Friday was a pretty good Friday all in all. She made it through the day without vomiting, which is good. She was way pale and super tired, but content to lay on the couch and watch tv. She took about a 3 hour nap on Friday and today seems to be running at pretty close to full speed.

We did sneak out of the house briefly yesterday to go pick out pictures from the last week. Betty Huth of Huth and Booth Photography here in Brandon did a family picture for us. They did a great job and were super with the kids. I spent about 20 minutes trying to fluff Mandy's hair and make it look a lot fuller than it is and through the glory of white light and Photoshop, Betty was able to lose the circles under her eyes, etc. They were absolutely great to work with and the end result is the new picture above! Check out the family picture on the photo page too. We really love it! Thanks, Betty and Ed for a beautiful lasting memory.

We are having a delightfully quiet, lazy weekend. There's plenty to be accomplished, if we wanted to, but we've decided we don't want to. It can wait. Seems like a good time for a breather.

Thanks as always for checking on her! Love to all~

Thursday, May 29, 2008

Thursday concerns

So, Thursday...another has come and almost gone. Ours started out nicely. Lithia Springs, the elementary school that the kids used to go to, had their AR carnival today. Mandy's former 1st grade teacher invited her to come up and join them! So, we went and Mandy got her face painted, got a butterfly tattoo, saw all her old buddies and teacher. Thank you Mrs Shawah for including her in that today! She had a great time!

After that, we were off to clinic. She did okay today. Her bloodcounts were decent. Nurse Vicki had some concerns about some other things, as did I. Mandy had a 'not quite firing on all cylinders' kind of day today. She had squat for short term memory and her speech was slightly slurred. My Mom called to talk to her while we were at clinic and after Mandy had talked to her and I got back on the phone, my mom said, 'She doesn't sound all there today.' So, you get the idea, it was pretty obvious all in all. This isn't entirely new in our world. This sort of thing has happened before. It certainly could be a tumor progression issue, but it could also just be some neuro symptoms popping back up.

They tried to move her impending MRI up, per the Docs orders last week. But, the day hospital is full and has no openings at all. In order to get her in sooner, they would have to admit her, and frankly no one wants that. Putting an immune compromised kid in a building with a bunch of sick people and their germs, not a great idea, if it can be avoided. We are in single digit days until that appointment. So, it was decided to just wait until the scheduled appointment. Vicki did go talk to one of the Docs today after she saw these things happening with her. Given that it isn't completely new symptoms, he agreed to not be admitted and wait for the appointment. Though we left on strict orders to call immediately if symptoms changed or worsened. So, there ya have it.

When we got home, the Popcorn Fairy had been here! :-) Our great friend, Tracy had picked up a bunch of popcorn for Mandy. Mandy was giddy! She was the game show winner girl on the Price is Right who just won the new microwave oven and bouncing around and grinning! :-) Thanks, Tracy for thinking of her. My good buddy, Kelly, stopped by and hung out with us for a while. And Julie brought us a yummy dinner of chicken parmigiana for dinner tonight. The good friends in our lives are a blessing for which we are eternally grateful. We love you all!

On a funny note, we were eating dinner tonight and Mandy says, 'Do I get to pick dinner the night before my MRI?' She has to be NPO(no food or drink after midnight the night before until after the scan is done) so we always let her choose dinner, in hopes that she will gorge herself and be able to stave off hunger a while longer during the long day the next day. So, I say, 'Yes, baby, you can choose dinner the night before. What do you want?' Any guesses? Come on, you know you know...her answer....'I want to go to Carrabba's!' Well, duh, of course you do. Cracked us all up. If we could just get them to serve a popcorn appetizer, it would be Nirvana for her. Popcorn and cheese ravioli from Carrabba's, just how long can one eat only these items? Stay tuned.When we figure out the answer, we will let you know.

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

Wednesday, May 28, 2008

Dreams and diversions

Mandy spent most of her day on Friday strung out on Ativan, a narcotic anti-nausea medication. She was sick the minute she got up on Friday morning. As soon as I got more Ativan in her, she did better. I hate giving her that stuff, but it is the only thing that helps on days like that. So, it is what it is. Most kids it knocks them out, but Mandy is a drunk college girl. She is giggly, goofy, staggering around and when it wears off she gets sick and crashes hard. Benadryl does the same thing to her. Makes both Alannah and Zachary unconscious....Mandy, on the other hand, it totally hypes her up.

We had some decisions to make this weekend. We discussed at length Mandy's wish of Hawaii. Ronnie and I came to the conclusion that it is just too far. It is a 5+ hour flight from California to Hawaii and 5 or so hours from here to California. Plus, it scares us to have the potential for being over the middle of the Pacific and needing a Doc RIGHT NOW. So, we had kind of decided to steer her towards The Atlantis, what was originally her second choice. The Atlantis resort has been advertising heavily lately on Nickelodeon, with ads geared towards attracting kids. Sunday afternoon, she was taking a rest in our room and watching tv. She came out and asked, 'Can we go to the Atlantis instead of Hawaii? I just saw another commercial and it just looks so cool!' Yup, baby, we sure can ask.

So, the really exciting news is Kristin from Children's Dream Fund called this afternoon to let us know that she was already on it and that has already gotten The Atlantis Resort APPROVED! Mandy was THRILLED!!!! As were Alannah and Zachary! Thanks so much to Kristin for being so quick to make Mandy's dream come true! The Atlantis looks awesome! For my kids, who are total water freaks and would sooner swim than walk, it is like Nirvana! Thanks, Kristin for making that happen! She even said that they often work with Angel Flights and that she may be able to have us fly over on a private plane, instead of going commercial! How cool would that be?! It is all volunteer based, and with the price of gas these days, it may not happen that way, but commercial or private we are beyond excited! No dates yet, but may be as soon as the late summer.

In other medical news, no word yet on rescheduling the impending MRI. She has a rash right now, on the skin above and around her port. It is a sandpaper-ish rash that itches. I will call the Doc in the morning to ask about it. I am pretty certain it is something topical and nothing to worry about.

Only 6 more days of school left! This is great news in a lot of ways and yucky news in one. As soon as school is out, I am officially unemployed. They were so sweet and let me work 3 days a week after Mandy was diagnosed for the rest of this school year, but that isn't an option next year. I need to find some job I can do in the middle of the night from home...some data entry thing would be great. Or better yet, winning the lottery...but oddly, I think you have to buy a ticket for that, and I am so not a lottery ticket buying kind of girl. :-)

That's about it. Back to chemo on Thursday. Thanks for checking on her. Love to all~

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~

Wednesday, May 21, 2008

She knows what I don't need

I am back from Orlando and Jerry's funeral service. It was a lovely service and I am glad I was included in such a beautiful family. He was a very loved man and that was abundantly obvious today.

I ended up not taking the kids with me, which turned out to be good thing. Zachary and Mandy were hanging out with my good friend, Kelly and her kids. They made hats, which Kelly got in anticipation of Mandy wanting/needing an alternative to hair as a head covering. :-) They had fun and played and swam all day. When I came to pick them up, Kelly asks, 'Do you have a morbid sense of humor today?' Hmmmmm, well, sure, I suppose so, what the heck. So she proceeds to tell me that Mandy and her daughter Amber were playing in the pool. Apparently they were roughhousing and Amber did something that Mandy found offensive. Mandy, being Mandy, felt the need to tell her and proceeds to spew off this little pearl of wisdom, in a very adamant voice, "Amber, stop doing that. If you make me hit my head on the side of the pool, crack it open and I die, then my Momma will have to go to another funeral and she just doesn't need that right now."

Well, there ya have it. Leave it to my kid to cut right to the chase. That whole apple doesn't fall far from the tree thing ... may have a point there. :-)

Back to chemo tomorrow. Oh, and my car is ready so I have to turn back in my nice, shiny fancy schmancy loaner car. Darn them for being so efficient.

Thanks for checking on her. Love to all~

Tuesday, May 20, 2008

She is not her hair

Mandy has brought me handfuls of strands of hair on three separate occasions today, saying, "My hair is falling out, Momma." She seems okay with it. I find this timing a bit odd, given that she has had two weeks off from treatment. But it is definitely consistently thinning. I think it is still not terribly noticeable if you don't know. I am more okay with it that I was a few weeks ago and I think she is too. Maybe it won't all go, but I rather doubt it. We shall see.

Back to chemo on Thursday for both Carboplatin and Vincristine. I am worried about how she will handle going back on it after a two week break. Hoping it isn't rough for her. It's an odd thing for me...I have been nervous without least then we are doing something active to combat this. There is a certain really odd level of uneasiness that went with this break. The sane part of me knows that is ridiculous...chemo is cumulative. It adds up on you, so a break isn't really a break. If that makes any sense.

I seem to be having one of those days. Don't know why ... just feeling emotional and out of sorts today, for no real reason. I am worried about her MRI in two weeks. I am worried because the platelets were so much lower last week and how they will respond when we reintroduce the chemo on Thursday. Worried about a bunch of stuff, for no real obvious reason. Just a huge sense of impending doom ... I hate that. I suspect I am just tired.

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

Sunday, May 18, 2008

Redefining 'tacky'

What can I say? Sometimes the gets to you. It can make you do crazy things. :-) Last night, a fund raiser was held to benefit the Children's Cancer Center. This was an adult Scavenger hunt through downtown Tampa and Ybor City (Tampa's "entertainment" district, which is a Chamber of Commerce-esque way of saying, "where the bars are.") Each team had to have a name, a theme and a costume. The Center gave a team to a group of Moms: Anissa, whose daughter Peyton, 4, is battling leukemia; Renee, whose son Justin is fighting a brain tumor; my new BFF Holly Wirth, whose beautiful baby girl, Paige, was healed in Heaven from Glioblastoma Multiforme three years ago; and myself.

Holly, Anissa and I spent a hysterical morning at Goodwill looking for inspiration a few weeks ago. We laughed so hard we cried and went through many options including Brides, worst prom dresses ever. We were finally struck with just how many horrid Cheetah print dresses there were in the world, all for $5 or less too! :-) And so, The Cheetah Girls were born.

To merely call us tacky would be an understatement of epic proportions. We were HIDEOUS and we loved every minute of it. So, armed with our competitive spirit, a Trolley pass and a digital camera off we went. We had challenges like letting a dog sniff your butt and you got double points if you sniffed the dogs butt back. I did this one...the dog, well suffice it to say, he was not amused. :-) Anissa had to eat Wasabi and slam a beer. Holly had to dance on the bar at Coyote Ugly. Renee had to do a shot that had a hot pepper in it. It was a hoot! You had to get strangers to switch shirts with each other. You had to bedazzle a bald strangers head with yellow glittery flower stickers. You had to get a stranger to give you a piggy back ride...the list went on and on and on! All of this had to be documented on digital camera for the judges review at the finish line. I had a really emotional moment at the finish lie when they called all the parents on stage and the whole room gave us a standing ovation. Us? You gave US a standing ovation? You all are the ones raising all this money to help the Center, which is such a lifeline for all of us. I truly wanted to yell, 'Sit down! We should be giving you a standing ovation!!' It was truly very touching. Like I said, there are pictures to document the 4 hours of sheer stupidity! I can share the pictures if you like! :-) But be afraid, be very afraid!

I don't think I have laughed that hard in years and I certainly haven't laughed that hard in the last 3 months, since Mandy started treatment! My fellow Cheetah Girls were the best! Anissa, you rock, sweetie! Watch out for the trash guy dying to give you a piggy back ride!! Your friendship coming into my life was absolutely a God moment. Holly, I feel like I made an instant lifelong friend in you. You rocked that Coyote Ugly bar like you had been up there all your life! Renee, you were a ball and always willing to take one for the team, if it was slamming Dippin Dots Ice cream or nasty pepper juice drinks, you were a rock star! Sure hope your earring finds its way home to you! I certainly hate the method by which these amazing women all came into my life and I into theirs, but what a blessing to be able to call these wonderful women friends.

All of this fun and games was in the name of the Childrens Cancer Center. I don't know what we would do without this group of people. The love and the support and the understanding is never ending. I could go on for hours and never be able to say enough wonderful things about the director Mary Ann or her staff or the Center. Every city, everywhere needs a group like this for families. They set up funds,like Mandy's fund, for people to make tax deductible donations to help out families as we all struggle through the financial mess of treatment and loss of income and all the added expenses. They host a support group every other Thursday, feed us and our kids dinner and entertain the heck out of the kids while they let us parents talk and vent and cry and laugh together. They are always there for families whose children didn't win the fight here on earth, to help them through however they possibly can. They show up to visit families in the hospital, usually with real food from the outside world. They host summer day camps for the kids (not just the patient but their siblings, too). Truly, it is an amazing group. We are so lucky we have them here. And you know what, it is absolutely 110% worth smelling a dog's butt to have this group here!!

My fellow Cheetah Girls, we were truly Cheetah-licious! Same time, same place, more fun and more tacky outfits next year! The first three will be easy! That last one, we are going to have to work hard to top our tackiness level this year! Thanks, ladies! It was a blast!

Mandy is doing well. Two weeks with no chemo has been a really nice and much needed break for her. I think she may have actually put a little bit of weight back on, She starts back on chemo this week. She will be having MRI scan in just a few weeks to see if the chemo is making any progress yet. Please, send a lot of prayers her way for some good news, not just on the optic glioma but also on the brain stem and ventricle area lesions that are of such great concern.

We will be driving over to Orlando on Wednesday for a dear friends father's funeral. He lost a very long battle with prostate cancer. Heaven truly gained an angel in this man. He passed away Friday at 12:30 am. I can only imagine how beautiful the sunrise must have been that morning in heaven with him there. He was an incredibly spiritual man and had no doubt what was next for him. I am certain Jesus met him at the Gates and handed him the baby daughter he lost in a car accident so many years ago. Firios family, we love you to the ends of the earth and back. No one could have been more loving for Jerry than you all were. I know he reciprocated that love a thousand times over. We are all better people for having known him. As always, we wrap you in our prayers for peace and love and strength. We love you!

One other thing, Mandy and Zachary's school's PTA will be hosting a fund raising garage sale for Mandy on June 7, here in Brandon. More details to follow. But, if you have any garage sale stuff you would like to donate to the sale,please, let me know and we will let you know where you can drop it off or we can make arrangements to pick it up. We also need volunteers to work that day and help out. You can contact myself or Kristen Norse at if you would like to help in any way. The money raised will be placed into Mandy's fund through the Center and will be used for expenses associated with her care. It is so hard for Ronnie and I to be on the receiving end of something like this. It is an exercise in being humble and willing to accept help. Neither of those come easy for us. But, that being said, we are so blessed that they have asked to do this for us. It is things like this that shine a light in a dark journey and we are so grateful.

I think that is about it. Sorry for being so long winded! Thanks as always for checking on her! Love to all~

Thursday, May 15, 2008

The Popcorn/Ravioli Diet

We ran up to clinic today for a finger stick. Her numbers are great. Platelets were lower than ever, but not scary low, just noticeably lower. Next week it is back to chemo, both Vincristine and Carboplatin. I am hoping that readjusting to the drugs will not be too hard on her after two weeks off.

We dropped off my car to be fixed and thanks to Autoway Chevy of Tampa and their manager Art Spath and Ruth Cannon, in the collision department, we are now driving around in a super nice new Trailblazer as a loaner vehicle. Mandy LOVES it cause it is sparkly purple! :-) I, who have been a die hard minivan lover for years, actually really like it too. Is it totally wrong to hope my car repairs take a long, long, long time???!!! :-)))) Thank you so much for your help, Art and Ruth!!

I was talking to a friend on the way to clinic this morning and was pondering a life question. How long can one child survive on nothing but popcorn and Cheese Ravioli from Carrabba's???? I need to own stock in Pop Secret and Carrabba's!! It can't be homemade cheese ravioli...I could grow my own wheat, milk my own cows for the cheese and grow my own tomatoes for the sauce...wouldn't matter. It needs to be Cheese ravioli from Carrabba's...thank you very much. But, hey, if you get it for her, she eats it. Every time. Almost all of it if not all of it. This is huge in my little world. Such is the life of a cancer mom. This morning, for breakfast, she had about 1/4 of a waffle...and....ready for it??? Popcorn. Why popcorn, you ask, for breakfast of all things? Well, the answer is really quite simple....because Carrabba's isn't open at 8 am. I will go broke(and am headed hat direction) providing Carrabba's cheese ravioli and popcorn if she will actually eat it.

We are off the CCC(Children's Cancer Center) tonight. The kids are always so happy to go to group there.

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

Tuesday, May 13, 2008

From Alannah

We had our friends the Mayhew's (sadly minus a Mayhew Dad who had to head back to work in Alabama) over to play on Mother's Day. Anissa, Ma Mayhew(an homage to your budding 'Bama roots) has become a very special friend. They have three fabulous kids, the youngest of whom, Peyton, is fighting leukemia. The kids swam like fools all day long. Upon leaving, Alannah sat down at the computer and wrote this down. In 5 minutes, she wrote this....I can't put together one single articulate sentence in that amount of time. Anyway, all is okay here with Mandy. We go in for bloodwork, but no chemo on Thursday and then to the Children's Cancer Center for Group on Thursday night. So, cause I have no news to report and because this is just the kind of Mom I am....more from Alannah...

And as I sit with five candles flickering before me like stars

I remember Peyton's laugh, soap bubbles, pearls, from her mouth.

And as I sit with the keyboard beneath my fingers

I wonder what else there is to say.

And as I sit with the world in a box in front of me

I marvel at the number of people who don't know.

And as I sit with life all around me

I am amazed at how fast life can disappear.

And as I sit unscarred by tragedy

I hope that I can remain so unblemished forever.

And as I sit with love enfolding me

I feel for the people who don't have that luxury.

And as I sit with no sickness inside of me

I see my little sister's face at the forefront of a line of people who do.

And as I sit with the means to tell the world three feet away from me

I pour hope into my body from the pitcher we all share

As improbable as it seems.

Thanks for checking in on her. Hope and love to all~