How did 3 months get away from us??

Life had been fairly routine with Thursday Chemo's until an eye exam about 2 weeks ago when suddenly we came to the realization that Emma was seeing NOTHING out of her left eye. Time to move the the MRI up and change course. So we had an MRI in 2 days and the tumor has changed a little and with the clinical changes we were on to chemo #3! This is where I wanted to be 5 months ago I am trying hard not to think about all the time, gas and energy was wasted in the past 5 months.
We started the new chemo which is called Avastin/CPT11 yesterday, 2 years after we started the first chemo. The oncologist said to us "The protocol is 2 years but if things are going well we will keep going after the 2 years!" I can't even let my mind go to the fact that by time she is 10 she will have spent almost half of her life in chemo. I feel strongly though this chemo will work and the tumor will shrink..
The good thing with this new chemo is the fact that it is every other week so we will get a break from our travels. The side effects or potential side effects are a bit scary but we will deal with them if we have to and hopefully other then the sickiness ones we wont have any and I will gladly clean up vomit poop what ever if this %#@#$ would just stabilize.
So I am hoping with a break here and there I will have a little more inspiration to write.

Ok some how time is getting away from me....

Life in our house has not been a dull moment, Emma's Chemo is going well and we just had a stable MRI which is all we can ask for at this point in time...now we get to face our next HUGE challenge.

Emma was born with a right leg that was bowed, my mom voice said "That just isn't right" but I was assured that it was fine and would straighten out. Well at 15 months she was climbing up me and fell and I heard a snap. I walked out on the deck and said "Jim she just broke her leg." Sure enough she had. They splinted her and 2 days later we were sitting in a local orthopedics office, he walked in and said "Your daughter has pseudoarthrosis of the tibia. You are looking at years and years of surgeries and you will probably want to amputate by time she is 8. I am sending you to Madison. And he walked out of the room. With us sitting wide eyed and bewildered. And me saying that mom voice was right. Several days later we met the man who is now Emma's Orthopedic Surgeon, he is a wonderful man who can calm us in a minute and told us Emma would be just fine. We swore up and down that we would never be at that point, we would never 'give up'.

Since that day Emma has spent probably close to 1 year in a cast, she has had 4 surgeries-2 major and 2 minor. That leg has atrophied and the foot is 4 shoe sizes smaller. Her leg in the past year has bowed to the point that the rod is sticking out of the bone and will need to be replaced in the next few weeks. How will this surgery go? Well the man who has always calmed us in words says "Just Fine" body language makes me wonder how he really feels.

Then the question in our minds is ""Is it time??" Funny how time makes you realize that it isn't giving up it could be opening Emma up to a whole new life. One where she can sled, she can jump on a trampoline, she can do the monkey bars, ride a bike...the list goes on and on. And yet once the leg is gone....it is gone for ever and there will be a whole other set of issues.
If surgery goes well next week well it won't be an issue because we do have a bigger problem on our hands right now, if not we will be facing one of the hardest decisions of our lives. Yesterday Em said something to me that broke my heart and yet you must understand it was said with a smile in her voice "Mom have you ever broke a bone or had a cast??" Me "No Emma I haven't" "Wow you must have had a great life" What can I say to that??? Would we really be giving up???

The good in a brain tumor

Two years ago I never imagined I would be sitting her telling you that in many ways Emma's brain tumor was the best thing that ever happened to our family I would laugh and call you crazy. (I probably would have added one or two words in there but I wont put them here, in a family friendly blog.

Anyway our lives have been so enriched and touched and are just better because of what we have had to struggle through in the past few years. Sure monetarily life probably isn't better, I was going to go back to work 2 years ago, and again this fall when we were told we were back in chemo. But we have met so many wonderful people and have learned how truly amazing people are.

Last year we came up with over 100 people that we never would have met if Emma did have the brain tumor, and countless things we got to experience. I want to touch on just a few of the things that we experienced since that fateful day in 2007.

One of the things from that first year that stands out in my mind is the Kim Pope Memorial Ride. It is a Harley Ride that is done yearly for a child suffering from a brain tumor. It was a really fun day with Emma and I riding in the side car, in front of a mile of bikes. I still get chocked up picturing that line of bikes behind us. Through this ride we met some amazing people who are very giving and we still see/talk to them today. I don't think any of us could ever truly put into words what their friendship means.

This past summer we got to go on a Make A Wish trip. It too was truly an amazing experience that will get an entry all of its own. Let me just say We can never go back to Disney again because as Jim says "MAW ruined Disney for us" (this is because they took such wonderful care of us and we didn't have to wait in line and...lots of special care)

Our most recent on occurred this week. Some one a while ago mentioned this organization to me called "Friends of Jaclyn" It is an organization where they pair up sports teams with kids who are suffering from brain tumors. Well I had been contemplating signing Emma up for a long time and last week decided just to do it. Well they already found someone for Em, as a matter of fact the team was 'waiting' for her to sign u.(well not her but someone) We are so excited about this and cant wait to meet with the girls in a few week.

Allie's blanket project is another great thing that came out of all of this. It is growing by leaps and bounds, we are getting all kinds of people who are wanting to help. She is showing a strength in talking about it to her teachers and peers. In this she is teaching all kinds of kids that kids get sick and the joy in trying to make them feel better.

I would be lying if I said I was glad she got this Tumor but yet when I think of all the people we met and things we have done because of it and how much better our lives are I can tell you there is good in brain tumors.

8 years ago today....

The world as we knew it changed forever. Seeing the videos/news reports from that day bring back the memories like it was yesterday. Emma noticed the flag was "Down" today and asked me why...so I explained it to her. How do you explain what happened that day with out scaring your child to death? I can see Miss Emma never wanting to be on a plane again? Or now going to school and telling her class mates about it...but we must inform our young children so we don't have to relive the past.

Her view on it after we told her how many people died was "they are lucky because they are in heaven with Jesus" But we had to explain how yes Em that is a good thing but it is REALLY sad too, because all of these people lost their love ones.

8 years ago I was 4 months pregnant with Emma. Never did I imagine the child I was carrying that day would touch as many lives as she has in her 8 years. Never did I imagine in 8 short years my baby would be on her second round of Chemotherapy. That the PR people at our hospital would fall in love with "Hospital Emma". And all the wonderful stories she has to tell them. My oldest Allie who was a kindergartner that day who so innocently asked "How did they get to fly the plane mom? Did they just say 'Excuse Me can I please fly the plane?' would have her own non-profit organization by now. How much 8 years can change your life...and though you may find it hard to believe our lives are better for all we have been through.

I will finish with saying God Bless all of you who lost you loved ones that day....

Week of Sept. 1 2009

This week was an exciting week in our house. The first day of school!!! The day all moms dream about from about July on! I couldn't get over how quiet my house was during the day, no TV, no cell phone beeps from texts, no fighting, no "Mom I am hungry!" Of course that silence was short lived when we had to head to Madison the night before Chemo because we had to be at the hospital early for a CT scan on her leg.

Em and I were sitting at dinner with my aunt, and I said something (don't remember quite what I said because what came next shocked me SO much) and Em said "I don't think so.." Mom I was going to say Bull S@#$, GULP! "Um Em you can't say that!" "Why mom you do!!!!" OOOPS....

Really the rest of the trip was fairly quiet, she was not feeling 100% so she layed a bit low. I kept waiting for a zinger it just never came.

Over the weekend we had the pleasure of visiting some friends whose son also has NF and a brain tumor. These two are two peas in a pod. First of all both of them have done Chemo before, so they both understand this isn't fun. Kids there own age just don't get them, they both have attention issues. But you put these two together and all of that goes away, they are happy together and just gel...they tell us they need privacy to talk about Chemo. He waits on her hand and foot, they decided last night it would be cool if they got married. Here it is writing incase 18 years from now it happens.

On Sunday Emma was working on homework and I was told I couldn't help her with it she had to do it all on her own.
She got to the part of the vegetable she doesn't like...squash...."Mom how do you spell it" "Can't Help you"...UMMM"Peas..." she settled for tamatoes....

Oh and her favorite sport is "The gift Shop!!!!"LOL--thats my girl!

Why I am doing this/ the long journey we are about to embark on!

Last week my DD had her every three month MRI. When our NSG who we refer to as Dr Benny walked in the room you could just tell he didn't have good news for us. You see our DD Em has a genetic disorder called NF1 and has multiple brain tumors from it, we have been dealing with them for 2 years. She did a year of chemo and has been off it for 6 months....I bet you know where this is going...Sure enough the tumors grew and she needs to restart Chemo. We will be doing a chemo protocol that includes 52 weeks of Vinblastine. I update health issues on her care page (maybe some here...)this blog is set up to help us remember the funny things she says or does during our drive to Madison weekly in the car....because as we have learned living with Emma she will always say or do things to make us shake our heads and will somehow help us all summon the strength from with in us to survive this journey again.

So the funniest thing that happened our first week as we are discussing starting chemo with the NSG was the point that Emma said "I am really sick of that Barack Obama giving me head aches!" Now Jim and I NEVER discuss politics--really are quite middle of the road people if we did, NO CLUE where she came up with that! Jim says "I think we all know where she stands on health care reform!" Turns out she was talking about her head ache medicine Neurotin and it isn't working well...

She has been quiet sad the past few days about having to restart chemo, unfortunately she ended up with some mouth sores from it this past week...so she hasn't been to witty but we all know it is still there so I hope to keep you all very entertained as I so know we will be!