Swimming Pools and Movie Stars....

Oh yea, you are hearing the music in your head as you read the title. We had a little of both going on in this house yesterday. Since Lucy can't do public pools, we decided to go ahead and purchase one of those small intex pools, it's no bigger than 2.5 feet deep, if that, but we were tired of filling up the the kiddie pool everyday and then draining it. So with this one, we can't treat it chemically and not have to do that. And hopefully the water will warm up in it so it's not freezing every day for the kids. And it's just one more thing Lucy can do at home to keep her occupied. So we get the thing finally all filled with our awesome water (that mini treatment plant we had to put in was worth it for this project), and the kids were absolute heathens yesterday, so they were in bed by time it was all set up and ready to go. Zach says "wanna go swimming?" I said it's freezing. He said well let's hook up the hose to the hot water heater and warm it up. At this point, I gave him a look of fear. I said "can you do that? Won't it flood the house or something?" he reassured me there was a spicket on it and it would be just fine. So he goes inside and a little later, I see his head pop out of the bedroom window. He says "hand me the end of the hose, I'll just run it out the window". Again, I say "are you sure this is ok?" he said "yea, I saw it done on tv once". So I'm Thinking ok, he watches This Old House and I hand him The hose. After sitting there for a couple of minutes AFTER I give him The hose, I think about it more and said "hey, the red green show doesn't count! He smiles. He shakes his head and says no no no. It'll be fine. So I take the other end of the hose and proceed to hold it in the pool, and sure enough, hot water comes out and starts filling the pool. Now we didn't have enough in there to make the pool super warm so we opted not to swim, but I can't imagine what the neighbors thought if they saw a hose running out our bedroom window, except maybe flashes of cousin eddy or the Beverly hillbillies. He told me later that it was in fact the red green show where he had seen this done before!! Ha! I told you we were a bit "off". In the end, Lucy got a pool that be kept clean each day, hopefully warm up, and no damage was done to our water heater or house!!
Yesterday, I also got an announcement from one of my favorite new Facebook pages "Dying to do Letterman" that they have been selected to have an opportunity to compete for an Oscar. Now this is a documentary about comedian Steve Mazan who goes on a quest of making his dream of performing on the Letterman show a reality after he learns he has cancer and possibly only 5 years left of his life. Now I "met" Steve on FB from a page called cancer sucks. I had posted a video of Lucy when we first got to Memphis when she is saying she hates cancer and we suck cancer. He found her team Lucy page and when I saw the name of his documentary, I instantly felt like this was something I wanted to promote. The first person close to me that passed away from cancer was my aunt Tina, I believe I have mentioned her in posts before. I used to live at her house when I was younger during the summer months. I loved Tina so much. And as it happens, she used to stay up and watch David Letterman and just laugh so hard. She would let me stay up and watch it too. So when I heard the title of the movie, it instantly reminded me of Tina. Now, I'm not a movie buff or academy expert, but here is how this works, I think. In order for this movie to be considered for an Oscar, it must put on two big showings in new York and Los Angeles, and then you are talking independent films, you are talking a lot of money these folks don't have to put on the glitz it takes for advertisement and venue costs, etc. So what happens is the academy selects a few documentaries during docuweek and helps with some costs associated to get them up and running to do their showings, but they dot provide all the $. So the producers have to raise money to offset the costs. This is where the public comes in and can donate to the cause and help the underdogs get a leg up in the competition. It doesn't guarantee they will be nominated or win, but it is one of the first steps in going in that direction. I made sure I donated money on behalf of team Lucy. Why? Because it gets awareness out there surrounding cancer, which helps raise money for research. And most importantly, Steve has an inspirational attitude about live your dreams or die trying. And when I sat there and thought about what it is I'm "dying to do", I had to take a step back and think about it. And you know what? I can't come up with anything! I mean of course I want Lucy to get better, jack to stay healthy, and our family to survive through this 2.5 yr period as a strong unit, but those are givens. I want my "something" to be meaningful and exciting for me. Maybe I'm over thinking it. I tend to do that. Zach says I put too much emotion into everything I do. Which is very true. So I'm still thinking on this one, but have you thought about what you are "dying to do?" If you are interested in helping this cause so that this documentary can be shown in theaters all over the country, please visit them at http://www.kickstarter.com/projects/jokeandbiagio/dying-to-do-letterman-kickstarter-for-an-oscar-and
They have a short video that explains how it works (better than my description and way more accurate, and you can see a little bit about the film) and you can also pledge to donate to help promote the documentary.  Even an amount as low as $1 helps.  If they can get thousands of people to donate $1, it brings them closer to their goal.  Even you don't have money to donate, I encourage you to visit the site and see what its all about.

We Love RMH!!

Toddlers and Tiaras-WHAT??!!!

So obviously I was watching the show toddlers and Tiaras last night, and before you judge me on my tv choice, it's summer, and there wasn't much of a selection to choose from. But let me tell you, what a train wreck! I was so disgusted, yet I couldn't stop watching!! I used to think how could people put all that make up on their children and make them
Look so promiscuous at such a young age, well that is the LEAST of my worries after watching the show. Whatever happened to the parent being in charge? Clearly none of them are in that show. And what kind of values are they teaching their kids when they put them in a contest labeled "beauty". One mom was constantly telling her daughter she was the most beautiful and that nothing else mattered in life,and let me tell you, the mom needed to look in the mirror...just saying. And one parent constantly was saying how her one child was beautiful and the other was just ok. And don't get me started on the lady who spent 250,000 on pageants and didn't blink. I would like to send all of those people through a day at St. Jude, or any childrens hospital for that matter. Or tell TLC, if they want to do a reality show try doin one on a family going through cancer. Oh, I know the sensationalism is what brings viewers and money, but the media created this idea of "extreme" anyhow. And what I don't understand is how these people don't see it when they are put on tv? They are kind of being mocked or made of. And I know a show about cancer would definitely not be what folks want to relax to at the end of the night. I mean how depressing, or is it? I'll bet the kids in those shows don't cry over something as silly as a 4 yr old who still has a pacifier. And I bet those kids and parents don't obsess about having perfect hair or waxing their eyebrows! Ok that was suppose to be funny. I don't really have a point or lesson learned for the day, but it really just bothered me so much that I am dealing with chemo, children around me dying, parents losing their jobs, houses, and minds, and in another place in the world a parent is CRYING (seriously saw it)because her child didn't win grand supreme, or whatever it's called.
That show just made realize that maybe we aren't doing such a bad job as parents afterall. My children are kind, caring, and respectful to adults (not always us cuz sometimes they call us poopy heads). Through all they have endured in the past 6 months, they have yet to complain about anything out of the norm that most 3&5 yr olds complain about. And as I sat in bed with Lucy last night telling her the story of the three bears and goldilocks, I saw the most beautiful glow in her face and definitely her smile. I asked if she remembered having long hair, and she said "we shaved it off silly". I said "it'll grow back, she said yea I know, I dont care". So to that mom on that show who said beauty is JUST skin deep, she can shove it. My bald beautiful cancer child radiated way more beauty than any of those kids I saw last night.

Our first wonderful holidays with cancer

Yesterday was actually an awesome day! It was the first holiday since we have had leukemia in our lives where it seemed rather "normal". We went to some friends and the kids got swim the afternoon away, we ate from the grill, then we set out to find a new place for fireworks that was a little less crowded than where we usually go. Unlike Easter, we had people to talk to and be around and the kids, specifically Lucy loved getting out. Of course the kids fought a lot and drove us crazy, but that's to be expected ;) at one point, Lucy was holding up her pointer finger to jack and said "it's really my middle finger I'm doing". Jack said "mom, she is actually saying the worst bad word to me ever". That was something lovely he learned on the bus last year and came home asking questions, and guess who picked it up by just that one conversation. Now, they think shit is worse bad word out there, so I went with it. I told Lucy she can't do that, and of course, she said "it's wasn't my middle finger, it was my pointer one". 3 and she already knows the loopholes. I told her it didn't matter, she was acting like it was her middle finger. Ahhh the younger child learns things much faster courtesy of the older brother and the public school system! Jack learned all sorts of things on the bus last year. I can't believe that my first born is going to 6 in 2 weeks!! That just doesn't seem right. When the kids were babies, we were so ready to get out of that phase, especially with jack because we so excited for him to do "firsts", now I want tem
Both back as babies so I can snuggle them up, and so they don't talk back or sass me ;)if somebody told me how my life was going to turn out, and if I wanted to go ahead and proceed knowing all I know, I wouldn't change a moment of it. I hate the fact that we got dealt the hand of a sick child, but Lucy is an amazing strong spirit and people are drawn to her. She has a fiery attitude, and I'm certain she is destined for great things. If I had a choice, I would take the cancer out of her life, but as it is, we have to accept it and realize it's going to make her a lot stronger I've often heard that cancer doesn't define a person, or what he/she is, and I disagree with that. Cancer very much (or any illness) defines who you are. It makes them stronger, it may introduce them to people they may have otherwise not known, it may bring their family unit Stronger or resolve conflict. Lucy will forever have a connection with st Jude, she may make choices in life based on her experience and people she meets through this journey.cancer doesn't define the what, but definitely the who. And it's like that with any tragic event, it's up to the attitude of the beholder. After learning the news of Julian's death, it sure makes our life wonderful. Even in our world, there are always people much worse off than us. I have to remember that. Sometimes I have a bad attitude and feel sorry for us, and I'm not saying pity parties aren't helpful at times, I just need to put them in perspective and have them much less often. It helps when you get to be normal like we yesterday, so here is to more normals and less worries about the future. I cannot control what is going to happen, but I can ensure Lucy is getting the best care, has the most positive attitude, and protect her from The things I do have control over. Same is true with jack. Like I mentioned how he's learning new stuff on the bus, I'm glad he comes to me with those questions an doesn't feel like he's going to be in trouble for asking. And I'm thankful that he is able to share his feelings with me over his sister being sick. To put cancer in perspective on how my children view cancer, yesterday Lucy was playing with our friends' children, and telling them they had to be in the hospital for 10 weeks because she had cancer!! Like it was no big deal. I said "yea, if you want to play make believe with Lucy, it usually involves cancer and chemo, but you always get better". Then jack was chasing Lucy around the house calling her a bald headed chicken and they were giggling so hard. So lesson taken from them: live in our world instead of loath in it.

In our new world, children die everyday-- and it sucks

For those of you who have been following us since day one, you may remember that I posted about the first family we met with whom we related to.  They have a boy that is Jack's age, Julian, and a girl who was a little younger than Lucy, whose name is Mirabelle.  Julian had a form of brain cancer that snuck up on them pretty much the same way cancer sneaks up on a lot of the kids we meet at St. Jude.  Yesterday, in the arms of his parents, Julian passed away.  His fight was a hard one all the way to the end, and as most children with cancer, his strength amazed all around him.  I'm numb, sad, and can't stop crying this morning.  This part about living at RMH and in the St. Jude environment is the worst.  I can no longer count on one hand how many children we have met who have died.  That is horrible.  Before Lucy got cancer, we were oblivious to this world, and not on purpose, but because I guess I didn't think it existed, or at least I didn't want to know it existed.  But it does.  It is very real, very sad, and never gets easier with each passing, even though these aren't my children, but they could be. I am thankful everyday for St. Jude and the research it does to ensure that more and more children can be cured from different forms of cancer.  Heck, if we were living 30 years ago, the chance of Lucy surviving from ALL was slim to none, and now its a 94% cure rate.  But the brain cancers are the worst, specifically the brain stem types.  And I hope that people remember St. Jude when they have a choice of where to send their money for donations.  As one mother, what if it were child?  Wouldn't you want the best in medical care?  wouldn't you want the research to be top notch so another Julian doesn't go through what he did in the last 9 months of his life?
Zach and I are contemplating making it to Julian's funeral.  It broke my heart when I read his mother's post that she will let everybody know of "arrangements" as soon as she can.  Arrangements, what a funny word.  What an inappropriate word for any parent to have to say for their child.  We really want to go and show our support, and yet we do not plan on telling Lucy or Jack.  We do not want her to know or Jack of the children that die from cancer.  Some may not agree with us, but for us, it is the right choice for our family.  We want nothing but positive energy and thoughts coming from Lucy and for her continue her life as a 3 year old, and Jack is a worrier.  He worries about whether or not he picked out the right toy at a store when he gets to go shopping.  If we tried to explain the death of a child, he would only worry that he or Lucy were going to die.  And he would obsess over it.  And right now, we don't need that type of energy in this house, Zach and I worry enough for the 4 of us.
I am still in disbelief that this family lived with their child for 5 years and had to let him go yesterday.  I cannot imagine my life without either of my children.  And I cannot imagine what his little sister thinks or feels or understands.  they were like Jack and Lucy, and close.  Jack and Lucy may fight a lot, but they are each other's world.  And I have no words to offer Julian's mother, as there are no words.  To say he's not suffering and in a better place is a lie.  The best place for a child is with their parents, period.  And I know people won't agree with that statement, but that is just how I feel.  So in our new world, children die every day, and its something we can never get used to, and its something we wish would go away.

Is this what recovery is?

So I did a first over the last couple of days: I went back from day 1 of my blog on caringbridge and started reading it. I have tried before, and couldn't get through the first couple of entries without crying like a baby. Well, I'm proud to say, I got through about 10 of them before having to stop. It amazed me how all the emotions came flooding back and how "real" it became. I know we've been hitting this for 6 months, but sometimes I still wish it were just a dream. I hope to wake up and see lucys long beautiful hair matted to her head with whatever dinner we had the night before stuck in there. I miss the sense of innocence she had about her, which I think has been lost too soon. She went from my just turned 3 year old to way older than her body shows. She used to just talk about the "latar" as she called guitar and the "beagles" aka Beatles to saying words like "mediport, vincristine, methotrexate, procedure, and the worst one cancer". For her this is all a normal cycle and she still never complains about what she cannot do. It's summer, and I haven't heard one word or fit over swimming at state farm park. It's Zach and I who suffer the most. Not sure suffer is the right word, maybe struggle is more appropriate. We miss our old lives and feel very isolated. Oh how we would love to pack up the swagger wagon and head to the dells. Plus we feel bad for Lucy for having to miss out on things even if she isn't aware. And trying to find the balance of letting her be 3, and yet living with restrictions is tough too. So I am not sire, but I think going back and reading our first posts of our diagnosis may actually be a healing tool. Recovery. At least for me. I remember when I wrote those it was just a bunch of feeling that were floating in my head and if I wanted to sleep, I had to get them out. But as I go back, I read a lot of fear, sadness, and yet hope. Maybe next week, I can go back and look at a few more early blogs along with pictures of Lucy precancer. Those are tough too. It's funny when you look at our digital album, it goes from normal to cancer with no transition. Not that I think there is a transition period, it's just that cut off in the pictures describes how our lives changed so quickly, and so unexpectedly. So as the storm calms down, NOW is the time we are actually accepting what happened and trying to make sense of it. Everyone around us didn't have to spend 24/7 learning how to care for a leukemia patient or live life by the day, or even hour, so they have had more time to come with terms of what is going on. For Zach and I, that is just starting. But I guess starting is better than never coming at all. So here's to recovery of not only Lucy, but her family and their broken emotional state as well.

What is a weekend??--again forgive grammar errors, I'm mobile

Seems like I just posted, and it was an entire week ago! Boy how time seems to go by fast in this household, yet stand still at the same time. We are constantly meeting lucys demands, keeping up with housework and laundry (that would be Zach, not me), doing work from home, taking jack everywhere he needs to be, and of course our clinic days in Peoria every week. So with all that, and all of the things that have to move an inch from our to do list we have, this week has flown by, heck we've been in treatment for 6 months now and when I hear that or say that outloud, it seems as if it was only yesterday we got that heart stopping news that Lucy had leukemia. I remember that day so well. I still cry when I think about it. And yet when we look towards the future or look at some of the things Lucy is missing out on and cannot do, time stands still. She was playing so nicely by herself on Monday and for most of the day, Zach and I were both on our work laptops at the same time and being productive, yet we felt guilty for not sitting down there and playing with her. Life gets to be so overwhelming sometimes that it's easy to forget the simple things, like a tea party with your daughter, and yet those moments where you either get time to yourself or can actually finish a project are rare and coveted as well. We feel pulled in all different directions, and of course guilt consumes us. Not guilt because we feel it's our fault Lucy got cancer, guilt because we aren't playing with her enough, guilt because we do our work peace meal style, guilt because of what this is doing to jack, and guilt because we want a vacation from it all so badly. We figured it up and we have been doing this for 6 months now, and we have 107 weeks to go. Everybody told us we would get in thengroove and start living a new normal, and it's true, we are definitely living a new something. Not normal. There will always be a little bit of fear that lives in us everyday for the rest of our lies that her cancer could come back fast and furious, there is that small percentage that jack could get it, siblings have a small
Chance. Then guilt and a sense of relief always passes through us. Guilt when we hear another hold has passed away from cancer, but a sense of relief that it's not our Lucy, then guilt again for feeling that way! It's a horrible cycle!
Now its not always guilt, self loathings, pity that consumes us, I mean come on, we are still
The webers! We Are also trying to fill our days with laughter and trying to be a couple more by having more date nights. We are still normal in the sense that our children fight like normal siblings, test our boundaries, and drive us crazy. We are still the webers that let our kids swim in the kiddie pool in the backyard in their underwear. We are still the webers that maintain a Facebook page for our dog! And most importantly, we are still the webers that like to have fun, be silly, and act like we are all children from time to time. That part hasn't changed, it was just hidden for awhile, so it's nice to see it coming back around.
The hardest part about our new normal, as it's dubbed, is there are no longer weekends. And I don't mean Saturday and Sunday's, I mean there aren't days that are a slower pace like before. And that's hard to adjust to. When I see people post on Facebook "yea! Its Friday", I realize I miss that feeling. Know what else I miss, time in my home alone!! I miss being able to send Lucy and jack somewhere for the night. She really can't stay in any other places because everybody we know and trust to watch her have cats. She can't be around cats. And I know it sounds silly to want a quiet house, but really I want to be able to wake up the next day and enjoy my coffee on the porch and not have to meet anybody's demands but my own! I know or at least hope by fall, we will be back into the swing of things. Hopefully, I can return to work in the office instead of at home, jack will be back at school, and all of Lucy's hard hitting chemo sessions will be done. So while I know I want that time to get here fast, I want to always remember why's important and for it to stand still from time to time so I can have a tea party with my best girl.