Wednesday, January 26, 2011

The Ballerina

Lisa has been asking and asking to do ballet for some time now.  During Christmas shopping time, she marched up to me holding a leotard and tutu and said "Buy this for me so I can take ballet class."  I didn't buy the outfit (the princess already owns plenty) but I did promise to sign her up.  Maranda played a big part in this initiative.  Maranda has wanted to take hiphop for sometime and she did the legwork and found out the times and days for a ballet class for Lisa and a hiphop class for herself.   The classes are only for 5 weeks which seems the perfect amount of time to figure out if they like the classes or not. 

Lisa started yesterday.  She was so excited; she told everyone that she was going to ballet class.  When she got home from school she immediately changed into her leotard.  She was a bit perplexed when I told her she had to wait until after the big kids got home because the class didn't start until after that.  She managed to keep herself busy and took a nap waiting for her sibs to come home.  As soon as the door opened, Lisa bounded down the stairs shrieking "Mom, Mom, let's go, let's go, we have to go....they're home it's time for ballet!!!"  Needless to say, she was not happy to find out she had to wait until after dinner for the class to start.

Finally, the hour arrived.  On the way over, she asked  if I would be in the class with her.  I told her I had to wait outside.  She seemed a little worried, but I assured her she would be fine, she was a big girl and it was just like going to school.  We got to the studio and she sat patiently waiting for her class to start.

 When they opened the door, she jumped up and went right over to the room.  She handed the teacher a card she had made and entered the room all smiles.

I watched the door close and then proceeded to pop outside every few minutes to peak thru the blinds to see how Lisa was doing...yes, I'm THAT parent.  It was a wonderful moment and my heart was warmed by joy.  I kept whispering to myself, "she's doing it, she's doing it".  I know to most mothers of a 6 year old this may not seem like such a huge accomplishment.  Butttttt.....I found myself thinking back to the dance classes Lisa took when she was a toddler.  She was always developmentally behind the other kids.  She couldn't balance, couldn't climb, couldn't hang, couldn't walk on tiptoe....she would make an attempt, but mostly just walked thru the steps while the other kids jumped, twirled, and spun around.  So, to stand there and look through the window and see her point her foot, her raise on her tiptoes, twirl, do what everyone else was doing....it was wonderful.

This dancing ballerina may not have picture perfect moves, but she does have picture perfect spirit. This is the child that two months ago had so much pain she couldn't put pressure on her feet or wash her hands, this is a child who has scans lighting up all over with cancer, this is a child who is frequently taking pain pills for the aches in her legs and back.  All these things going on, and yet there she stood proud, smiling, happy to be a ballerina.  It was awesome!

Unfortunately, Maranda did not have the same awesome experience.  When we arrived for her class, we found out that she was the only one who had signed up so unless they got more students they would be cancelling the course;(   She's managed to arrange for her cousins to sign up for the class so hopefully next week she too can start dancing.

Until then, here's a little clip of the ballerina!

video

Friday, January 21, 2011

Lisa is doing very well.  She enjoyed MLK day off and the extra snow day our schools had.  We started her nausea pills last week with chemo and she has had no "upsets".  She is starting to complain about pain more and is taking those pills more frequently.  Most of her complaints are about her legs and back.  She is a very wise soul and seems to know when she needs to rest and when she needs to play.  Often she'll disappear up into our bedroom and make herself cozy watching tv until she catches her second wind.

I feel like I'm holding my breath and constantly saying prayers.  I'm still in denial regarding the severity of her scans.  I'm hoping her cancer has not built up a tolerance for the chemo drugs and that the next set of scans show that the chemo is doing its thing.  We are basically on a 3 wk rotation...chemo is week one, there is 2 weeks off and then chemo again.  Lisa will do the next round of chemo the first week of Feb and scans will be done the week of Feb 14.  For now, I'm trying to stay focused on how damn happy she is and follow suit.  We are all keeping busy and trying to "live" our lives and not let cancer take the lead role.

Please offer up some extra prayers for Maranda.   While the follow-up appts from her surgery have gone well, they've not involved much more than the ortho doctor talking to her and looking her over.  In the past two months, Maranda has been having a lot of neck discomfort so she has to have a MRI done this Saturday and then follow-up with the neurosurgeon to make sure their are not other issues.  Fingers,arms, legs and toes are crossed!!!!!

Thomas and Chrissy manage to hang on and not get lost in the shuffle of craziness.  Chrissy is actually off at 6th grade camp and returning tomorrow.  All the kids are counting the days until next weekend when they will all go to the Special Days Winter Camp.  It's for kids who have cancer or are sibs of someone with cancer.  This will be their second winter camp and hopefully Lisa's health will hold and she to will attend.

I'll end this post by sharing one of Lisa's "wise" statements.  The other day at dinner, we were discussing the amount of calories in bread and butter.  I was explaining to Tom that I needed to be careful how much bread I ate because of the calories, but that he did not have be as careful because he is underweight, more active, and growing....all of which means he burns more calories.  I went onto explain that because I weigh more than I should for my height, I need to be more careful about what I eat and make sure I exercise.  Lisa came up with another, much easier solution....she chimed in "you just need to grow taller!"

As always keep praying and keep living!

Thursday, January 13, 2011

So how does Lisa do what she does?!

She has a tea party, with her nurses, during chemo with the tea set we made the other day during treatment!


Now that's making lemonade, uh, I mean tea, out of lemons!

Wednesday, January 12, 2011

3rd day of chemo

We are in our third day of chemo and Lisa, as usual, is holding strong.  She seems a little more tired and short on patience, but who wouldn't?  Lord knows I'm tuckered out.

I want to thank all of you who are reading for all your kind thoughts and prayers.  A special shout out to Lisa G, Bill and Sue who joined Mike and I for drinks on Monday and let us ignore reality and just hang out.  It is all of you readers and supporters (and drinkers) that help get us thru.  I read every single response, post and email Tuesday morning.  I took as much strength as I could from your comments and prayers and used those, denial, and the mundane task of cleaning house to get thru yesterday. Thank you, thank you, thank you to all of you who continue to read and provide support....YOU are how I get thru, YOU are how I know I'm not alone, YOU are how I know if I crumble, someone will be there to glue, tape, stick back the pieces and help me take the next steps.

People often say that they don't know how we do what we do.   Well, the truth is, you do.  Whether it's cancer, teenagers, losing a job, in-laws, annoying neighbors, whatever the cross is, you do what you have to do.  Simple as that.  We take it one day at a time;  babysteps; one foot in front of the other... that's what gets us thru, that's how YOU would do what we do.  Really what choice is there?

So, right now what am I'm doing? I'm drawing on every single comment for strength, trying to believe in prayer, and looking to find myself in all of this mess.  I'm hoping that Lisa continues to be able to fight and am trying to hold the rest of the family together before we spontaneously combust.  Because while all the focus is on Lisa, I can't help but wonder the impact this is having on Mike and my long-term health and on Maranda, Thomas and Christina's emotional health.  Lisa has needed and gotten the most attention, while the others, for 3 yrs, have been short-changed.  Obviously, it's understandable and for good reason, but the truth is this cannot be easy on 3 developing teenagers.   It seems like as much as Mike and I try to dig out, we are only going to get deeper in the hole for a while and face a lot of cleanup.  It is overwhelming and that is where I jump back to babysteps...doing a little bit each day and trying to find good in each day and hope for the future.

Again, all I can do is take small steps and try to make lemonade out of lemons.  The best way I personally do this is to avoid staying at home idle why Lisa is living life and going to school.  So, on that note, I'm trying to cross off a few things on my bucket list.  One, I'm setting out to start an organizing business.  I've always wanted to be a professional organizer and with my mornings free and my mind full, this seems like a good way to divert my attentions and help others while bringing in a little income.  Two, I am looking for someone to help me find out if I should pursue the idea of getting the blog published as a book...something numerous people have told me to do.  Third, I'm looking into forming a neuroblastoma support group and possibly doing another fundraiser.

I know lofty ambitions given what we are going thru.  But honestly, I need other things to focus on or I will shrivel up into a ball and may never resurface.  Feeling sorry for myself, asking "what if", and searching for cures and treatments that don't exist is just non-productive, depressing and makes me want to throw in the towel.

So, hence the bucket list.  If you know of anyone that needs help getting their house in order or letting go of clutter, anyone who is knowledgeable about getting published, anyone who is interested in fundraising or who knows someone with neuroblastoma send them my way!  I can use all the help I can get in achieving my  bucket list and staying positive.

Thanks for reading, praying and sending support.  Keep up the good work, we truly appreciate it!!!

Monday, January 10, 2011

deny--deny--deny

that is all my brain is saying right now....scans were lit up, a lot, not good....doctor and nurse seemed pretty somber delivering news to me....might have been my perspective...i heard the words but have not processed nor accepted them yet.....

lisa started round of chemo today and will do chemo every three weeks until????????????????

i'll be at Chilis on ford rd in canton at 8:30 tonight with Mike for a BIGGGGGGGG drink....call either of our cells if you would like to join us....misery enjoys company and may need a ride home;(

Chemo Week - 01/10/11

Mike here again -
After last weeks scans, Lisa's doctor called and wanted her in for chemo this week rather than next. We're not sure exactly how to interpret that yet but there are a few theories.

1) The scans might show the disease progressing and she needs chemo sooner than later.
2) There's a chance of her getting into a study in a couple weeks and she needs to be a couple weeks out from chemo to be eligible.
3) Pfizer is running a special on cisplatin and vincristine this week.

Ok that last one just came to me. Thank God I still have my sense of humor. [Regardless of how twisted] I'm hoping it's #2. We'll know later today.

Lisa continues to be energetic and active so your prayers, energy, and mojo continue to do their magic. Thank you!

Thursday, January 6, 2011

Scans This Week


Mike here on the blog today:
Lisa is getting a routine set of CT and MIBG scans this week along with blood work. Today being the last day. Send her your best. By all outward appearances she's been feeling good lately. Since her first trip to St. Jude she seems to be feeling better and better all the time. At least to me she does. Christmas and New Years flew by, didn't it. It was great to be home with all of the kids and having a great time. I hope yours was as blessed as ours was.

The picture I've included is a snapshot of her at Christmas with a carboard Cinderella that she received.