Saturday, July 24, 2010

MRI Results

On Thursday, Sara and I headed to the oncologist to get the results of her MRI.  The appointment went well, and we agreed to scan again in 6 mos.

The report states that Sara's abdominal tumor remains stable.  In other words, it continues to grow at the same rate as her body, which is the best we can hope for.  The reason for that is because the tumor uses the same growth hormone her body uses to grow.  So until she is full grown and stops producing growth hormone the tumor will continue to grow as well. 

We don't scan her legs, as you can't really measure the tumors there so we don't see the point.  Those tumors are tracked by visual assessment only, and we both agreed that we believe her right foot and left heel to be bigger than her appointment 6 months ago.  We believe that they are growing at a rate faster than her body, but there is currently no treatment options.  We'll continue to watch and monitor this growth like we have been for the last 3 years.

The other thing we discussed was the continued pain in Sara's right leg.  It would appear that it doesn't hurt all the time, but only when it is over loaded with sensation.  Sara tells me it hurts when she bumps it, or when I put her sock on that foot.  It would seem that her leg is becoming more sensitive as time passes, but again there really isn't any treatment available that we aren't already doing.  Sara is already on medicine to help manage these over loads of nerve sensations.  Some days it helps more than others, and some days it doesn't help at all.  But it is the best we have for now.

Overall, the appointment was a success.  Her tumor is stable, and we're doing everything we can to manage whatever pain she has.  Her tumor has been stable for over a year, and that is an amazing thing!  Some days I never thought it would stop growing.  I'm so glad I was wrong!

Wednesday, July 14, 2010

Wishes Really Do Come True!!!

At the end of last year, I received a call from the Kids Wish Network (click the link to view their website) telling me Sara had been nominated to have a wish granted by this non-profit organization.  They grant wishes for kids 3-18 years old that have life-threatening illnesses.  I had to fill out a bunch of forms, so did her doctors, and then they told me that they would be in touch in the coming months to see if they would be able to grant Sara's wish.

This week they called me...they are granting Sara's wish!!!  I cried when she told me that they would be providing Sara with an all expense paid trip to DisneyWorld to see Mickey Mouse.  Sara had to speak directly with the wish coordinator and told her she wanted to see Mickey Mouse, go to the beach, and go swimming.  Of course, she said that they could do all of that. 

There are lots of details to work out, but I do know that we will be going Feb. 2011.  She told me we will be staying in one of the hotels on Disney's property for 4 nights, provided with a rental car, airfare, and some spending money.

Honestly, I'm still in shock!!!  I'm so glad that Sara will get to go and see Mickey again.  She's asked me so many times to go back since we went earlier this year, and it has broken my heart to tell her that I didn't think we would be able to go again.  When I told Sara today that we were going to see Mickey again, she got the biggest smile and gave me the biggest hug and told me I was the best mommy ever!

I'm so grateful that Sara will get this opportunity to have her dreams come true!  Its going to be amazing, I have no doubt!

Saturday, July 10, 2010

Sara's Latest MRI

I know, I know!  How dare it take me two days to post what happened when I admitted to sitting in a waiting room while Sara was having a test done.  To those of you who have been anxiously awaiting to hear the results, I'm so sorry for the delay.

With that said, Sara did great during her MRI.  She barely cried at all this time, and didn't fight us at all.  It used to be that when I carried her into the MRI room, she'd be thrashing around and completely hysterical.  This time she was crying, but mostly calm and didn't push the mask away or anything.  Unfortunately, I think she's finally getting used to it.  She went to sleep easily, and woke up just fine.  By the time we left, she was her normal self and you couldn't even tell she'd been sedated just a short time ago.  We won't get the results for a couple weeks; I have to make an appointment to see her oncologist to get them.  I'm hoping to schedule that on Monday, and of course I will be listing it on the right side of the blog under Important Events for those of you who want to know when it is.

She was also supposed to have an EMG, since she has to be sedated for that as well.  An EMG is where they take a tiny needle that has an electric current, and they touch nerves to see what kind of response they get.  That's the super simple version anyway.  We wanted to do it on Sara's legs, especially her right, because she has been complaining about pain for some months now but we're not really sure what that means.  Sara isn't old enough to tell us if its really pain or tingling or what kind of feeling it is, and since the nerves are compromised by all the tumors we have no way to even make an educated guess as to what it might be.  This test will tell us exactly that, and how sensitive she is as well, and then maybe we can find a better medication to help manage whatever it is that Sara refers to as pain. 

The EMG wasn't possible because the scheduler screwed it up.  I have to call her Monday to reschedule, and let's just say I will have a few choice words for her.  Its another trip to the hospital (45 min away), another 12 hours of starving my child, another sedation, and another day off of work I can't afford.  To say the least, I'm not happy!!  I scheduled this 3 months ago to make sure it would all go smooth, and look what happened.  So we'll see when it'll be rescheduled for next week, and of course it will be listed over on the right like all her other appointments. 

So after all that, we still had to head to her follow-up appointment at her urologist.  This was her yearly check after her surgery.  And the news couldn't have been any better!!!!  Sara's kidneys look amazing; the best they've ever looked in the 3 years of her life actually.  Her right kidney (its always been the healthier of the two) is functioning at 100% and is completely normal, and her left isn't far behind and healthy as well.  And it looks like, even with all the infections and opportunities there have been for permanent damage, it seems that she's escaped that for the most part.  This is the best news we could hope for, and it means we don't have to go back for a year!!!  A whole year, can you believe it?!?!?!?

And on a side note, Sara started at a new daycare this week, and she's loving it!  Sara has always loved going to school, so this is a really good thing for her.  She's adjusting well to it, and the kids in the class seem to love her according to her teachers.  It seems a good fit for everybody.

When we get to the oncologist and get the results of her MRI, then I will be posting that as well...could be a couple weeks though.  Not sure when we are going.

Have a great weekend everyone!!!  I know we will!!

Thursday, July 8, 2010

Odd Place for a Sanctuary

At this point Sara's had so many tests that I can't keep track any more.  She's been under sedation more times in her 3 short years than probably most of my family combined.  And yet again, I sit in the waiting room at TCH while Sara has her 6 mos MRI scan. 

We scan Sara every 6 mos to track the growth of her tumor in her pelvis; the one that has caused her to have her urosotmy and has the potential to cause huge problems with her kidneys and spine.  If it is growing at the same rate as her body, not getting any bigger in proportion to her body, we call that stable.  If it's growing faster than she is, then it is growing because it is continuing to take up more space which she needs for her kidneys and other organs.  The hope that it will stop growing all together are remote since the tumor uses the same growth hormone to grow that her body uses to grow.

We did the last scan in late January 2010, and her tumor showed it was stable at that time!

I've become a pro at passing the time sitting in these waiting rooms, and the free WiFi is a life saver.  I've read tens of thousands of pages of hundreds of books by now, and no matter what you do your brain is never far from what is going on around you.  Lots of times I'm so tired or overwhelmed that I just sit and watch the people and kids around me.

Some days as I watch I feel down and wonder if those parents know how lucky they are that their child can walk, talk, and looks relatively health.  Do they take for granted that their child can wear shoes, and do simple things like jump and run?  And some days I notice the cases worse than Sara, and I sympathize with those parents that they will never see their child do what "normal" kids even make it to adulthood.  Sometimes it brings me to tears to think about it, but it is a reminder of how blessed I am. 

I'm reminded every time we go to NF clinic that Sara is one of the worst cases they have, but it could still be MUCH worse.  Sara's life is not in danger currently.  She has no tumors near her heart, lungs, or brain.  People live relatively normal lives in wheelchairs, and that she won't be missing out as much as I worry she might.

This place is more than somewhere I bring Sara for appointments and tests; this place is a reminder of all the things that are good in life.  Caring people, loving families, life's ultimate blessings, and much more!  For me this place is a second home, and a place where I can reflect and process what is going on in my life.  This place is my sanctuary; its quiet, I can think, and I know that Sara is safe here and receiving the best care possible.  I know it seems strange to find peace in a hospital of all places, but that is exactly what I have found here in the past...and continue to find here each and every time.

Tuesday, July 6, 2010

Like Mother, Like Daughter

I was surfing through some old photos over the weekend and came across a very familiar looking photo.  It wasn't familiar because I remembered it being taken, or because it's one of my favorites...its the fact that I have the same photo from two generations without even knowing it.

In the old photos I was looking at I found this photo of my mom and me when I was around 2.  I know the quality isn't great, but its an old photo...and I didn't have a way to scan it so I had to take a pic of the photo with my camera.

Sara and I went and took this last year.  I had totally forgotten the previous picture existed, and there's no way I could have gotten Sara to hold that pose anyway.  But look what happened!  I think its kind of neat, and it makes me see how much Sara really does look like me.

So here we are, two generations with the same photo around the same age.  Its amazing, and kind of cool.  I still don't think Sara looks anything like me now, but I'm starting to wonder if she looks a lot like me when I was that age.  It seems that might be the case.  Like mother, like daughter I guess...or is it like daughter, like mother??

Saturday, July 3, 2010

Like a good neighbor...

I got reminded today (again) about how amazing the people in my life are.  It seems that I'm blessed in more ways than I even knew.

My next door neighbor moved into his house just a few months after I moved in to mine.  I've been in my house for over 8 years now, so we've been neighbors a long time.  We go in this cycle where we'll talk often and see how life is treating us, and then we'll have times that we don't talk to each other for a couple months.

In the time we've lived next door to each other he's received a kidney transplant, survived major medical complications, gotten married, and done more work to his house then I think I'll be capable of in a lifetime.  I've had multiple roommates, my family living with me, given birth to Sara, been in and out of my relationship with Curtis, been through all of Sara's medical stuff and discovered her diagnosis, and there's more I'm sure.

We talked a lot about kidney disease and all the complications that can happen when your kidneys are at risk when Sara started having problems with her.  He had just had his transplant and was finally making a turn for the better after being sick a long time.  He gave me hope that no matter what, she would make it through this.  During that time, we spent a lot of time hanging out and having BBQs together and all kinds of things.

Why do I tell you all this?  Because yesterday I ran into him out in front of our houses.  He was asking me how I was doing and if I needed any help with anything since he knew it was just Sara and I now.  I told him I was doing okay, and I couldn't really think of anything.  And he said that if I refused to ask for help, then he'd just give it to me anyway.  Right then and there he offered to mow my lawn for me!!!  A small chore in the big picture, but something that I never get to because I don't want to leave Sara alone in the house for an hour while I do it.  I haven't mowed my lawn in a least.  He said he knew it must be hard to find the time and was happy to do it for me.

So what did I do at 8am this morning, I mowed my lawn before Sara got home.  She spent the night with my mom and step-dad.  He said to me today that I should have let him do it, and I think he's still planning to go around the edges with his trimmer since I didn't do that part today...and haven't yet this year.  I was never good at accepting help, but maybe I need to learn to!

I'm incredibly grateful for his offer to help me!  Its nice to know that I have people I can go to in a pinch and they will help me with whatever.  I have a couple other neighbors that have also offered to help me out if I need anything, all I have to do is ask.  Its the asking part I'm not good at.

I always wanted to live in a neighborhood where I knew all my neighbors, and knew that I could ask them for favors in a pinch.  I never thought of this neighborhood like that, until it was just Sara and I.  Once it was just the two of us, my neighbors have made a point to let me know they're there for me if I need help.  One more blessing I need to remember every day...and how lucky I am in my life!

Friday, July 2, 2010

Something Different!

In the educational community there is a saying that teachers stick to.  When you find something good another teacher is using, beg, borrow, or steal to get it!  And I think that some items in blogging are the same.

Mary, my fellow blogger, posted 5 answers to 5 questions. You can read it here. I thought it was a great idea, so I'm stealing it...and she notes in her blog that she "stole" it from someone else!  And I agree, this is a nice change from the regular "life is good, and this is what we're up to" posts.

1.  What is one thing you miss most from childhood?
I miss living in a neighborhood where everyone knew everybody else.  Mom's took turns watching kids, and people drove super slow because there were always kids playing in the street.  I miss being yelled at by somebody else's dad for doing something dumb, and I miss the safety I felt because I knew everyone around me wanted what was best for me.

2.  Are you still friends with your friends from high school?
No.  I haven't spoken to any of them in quite some time.  About once a year I will run into a friend I had then since some of us have stayed in the same area for the most part, but I have no desire to seek them out and spend time with them.  Most of them have not made good choices since high school, and I just don't want to be around people like that.

3.  Is there a catch phrase, cliche, or word that just drives you bonkers every time you here it? 
At work I have a friend, and his catch phrase is "That's what she said."  Every time he says it, I want to smack him....but it makes me laugh to, so I don't.

4.  What is one thing that symbolizes America....besides "Old Glory"? 
We have a symbol for this country; its the American flag!  There is nothing else!  Our flag is awesome, it shows where we came from with the first 13 original colonies, and shows what we have grown into with our 50 states.  It has the power to lift people up in times of despair and the power to make people cry tears of joy.  Our flag says it all!!

5.  What are your 4th of July weekend plans?   
Tonight my daughter is staying with my mom and step-dad, so I'm going out with some friends.  Tomorrow night I'm bringing all the kids back to my house so my parents can go out, and we'll be camping in the backyard.  And of course, I always end my weekend with an evening with my honey.

So there you have it!  The 5 questions of the day answered.  I hope everyone has a great time celebrating our country's independence.  Be safe and have fun!