January 20 & 21, 2011

I made a calendar that represents what we were going through last year.  I just put it up.  Zach can't look at it, too raw still.  It shows pictures of what we were doing in January of last year.  Brought back some emotions, so I thought I would go back to my caring journal and see exactly what we were doing on those days.  Wow, to see how far we have come.  And I am so glad that I kept this journal, while painful, it also helps to see our mood, and where we were and Lucy's strength.  I know she is strong, but reading those words were powerful in relation to how much strength we had.  I posted the two entries below.  For those of you who have never read them, you made want to get a tissue...heck those that HAVE read it, it will bring back a flood of memories of where we were.  When I read the entries, its as if time stands still and I go back to that time.  I can see, smell, and hear what was going on back then.  It's truly amazing to see the start of our journey.  I am very proud of who we have become as a family based on this tragedy.  

January 20, 2011
yesterday was a short day at the hospital for daddy and Lucy only 4 hours.  I stayed here and did the cleaning and laundry (never knew we would have so much laundry for just three of us in a day!) Lucy seemed to have a rough morning.  Not sure if the chemo was starting to effect her or not, but she actually didn't want to eat.  But by time they got back, she was all ready to go and have her lunch.  
We also got to video chat with Jack yesterday before his first day back at school, and again when he got home from school, and before bed.  He asked when he gets to come back down here.  I think he's homesick for one of us.  and he brought up a logical argument: he said there are 2 parents, and 2 of us.  Why can't one of you be with Lucy and one of you be home with me? He gets that logic from his dad, and the emotion from me.  But you know, he is right.  As much as both of us want to be here with Lucy, the next couple of weeks are routine, no major procedures, and nothing out of the ordinary.  Short hospital visits, and long room stays.  So it might actually be best if one of us goes home to be with him for the next 2 weeks.  Plus there are things that need to be done to the house to get it ready for her first homecoming.  
One of the hardest things lately has been her hair falling out.  It comes out in clumps and there are bald spots starting to form at the top of her head.  the back is still pretty thick, but also starting to thin.  And its very emotional for me, and its bothersome for her.  Its all over her pillows, blankets, food, gets in her mouth, eyes, etc. So we decided to just shave her entire head last night and go bald. She was ok with it. At first she said it "hurt", and we said what hurts about it?  come to find out, it was the clippers and how loud they were.  So we gave her my ipod and sang the beatles with her while we shaved it.  When we got done and she looked at it she said "Now i look like all the rest of the kids".  It was as if she felt like she "belonged".  And while she is extra cute with no hair and chubby cheeks, it was very emotional for me.  The nurses warned that it was usually hard on mom the most, and they were right.  It just solidified the fact that she is sick.  I cried for about 2 hours last night down stairs.  The physical changes and emotional changes are hard for me.  I am searching for that little girl on xmas morning, and she is fading. She is now full of medical terms, procedures, no real "friend" interaction since we have to stay in our room if we aren't in the hospital.  Her normal energy is gone, and even her voice has changed.  I know this is all necessary in order to be cured, but I worry about what this does to her free spirit.  Zach says I worry too much. I just can't wait for the day when she is home.  and playing with her babies and in her room.  She asks if her xmas stuff is still there.  And then night time is the worst for me.  She has a lot of nightmares and groans a lot in her sleep as if she is in pain.  That is hard.  And I say all of this while also stressing that during the day, she really is a trooper.  I mean how can she not be?  there is the equivalent of gasoline running through her veins, and you wouldn't know it.  And then I slept with her again last night, so you never sleep too well when you are with her, and everytime I rolled over and looked at her beautiful bald head, it just reminds you that she is sick.  I guess when she didn't "look" like she had cancer, it wasn't as "real".  I know that sounds odd and maybe I'm not explaining it right or putting the right words on it.  Sometimes I still wish I could I go to sleep and when I wake up, it will all have been a horrible horrible dream.  
 I make sure that I don't cry in front of her, and that if she is down in the dumps (which is usually only when she is tired), we try to act silly and get her mood up and take a nap as soon as we can.  I know she is going to react and act based on our actions and moods, so I never want her to see be have one of my "bawls", but I also let her know that its ok to be sad every now and then because this is a hard thing she is going through.  
I hope today is a better day for me and an easy day on her.   We go in to the hospital at 8 for her chemo, blood check, and to see Dr. Pui one last time before he goes to Europe.  He said "no worries, I am 7 hours difference, and can be here in no time".  He really is an angel on her side.  And he says for every one person cured at St. Jude, 1000 are cured around the world.  So that makes me happy to know that Lucy is helping to save 1000 other kids, and one day when she gets older, I want to make sure she realizes that.  
January 21
I woke up freezing down here in Tennessee, and then checked the weather for my friends in illinois! Yikes!! So sorry! Bet Taco was under the covers cuddled close to my mom last night!!! 
Yesterday we had our appt around 8 am at the hospital. when we got there, Lucy wanted to take her hat off so she could show everybody her new haircut. Here I was bawling the night before about it, and she was so proud!! I love that little girl! We told her it may grow back a different color, she is hoping for pink!
And she has a very beautiful head. We have never seen it before! She came out with the thickest black hair when she was born and it stuck straight up, it never fell out but just continued to grow, so this is our first time seeing her head. She is also quite proud that her and white look exactly alike! 
We had a short hospital visit again yesterday. Basically went in to see Pui, got some anti-nausea meds then the push of ara-c chemo. Her blood counts are all going up, with the exception of platelets, which is normal. Chemo is killing those, and eventually will kill the other cells too. Her ANC was at 1200!! Good to see that it does in fact recover after chemo. Pui said it will drop by the 24th again to zero. 
She also took a 4 hr nap yesterday! The longest since she has been here! Zach tried to sneak in the bed with me while she was sleeping, but she woke up telling him where he needed to be! Lol and it was nice to just lay next to each other even for a few minutes. We haven't slept in the same bed for 5 weeks, and hardly have had time for a conversation longer than 5 minutes. She doesn't like it when we talk, so we text a lot! Yesterday, we were trying to talk about bills and such, and she kept interrupting, so Zach had to sternly tell her to wait her turn and not interrupt because mommy and daddy had things to discuss. She started crying. And it's the first time she has broken down without hair, and we looked at each other and felt horrible! Of course, I had to say "nice, make the bald cancer patient cry". Haha we try to keep it "real" with her and follow discipline, but if you have ever disciplined a bald kid before, you know how tough that is!! 
Lucy also felt good enough to play some games yesterday. We played connect 4, but not the original way. Her way, and she won every game! Then we threw down a game of UNO moo! Lol it was fun. Then I painted her fingers and toes. 
The post from yesterday explained how I was worried that Lucy was losing her "spirit", and I had a good friend who herself has been battling breast cancer for many years send me a note. She said not to worry about the spirit, it's still there, it has just gone inside for now to fight the cancer, and that it will return. That meant the world to me to hear what lucy must be feeling and thinking but can't put into words. I told my friend before her and Lucy are going to kiss cancers ass, and they are cancer BFF's! And I believe that. They are the two strongest women I know and that was before all this happened!! I always thought Lucy "fought like a girl"! 
Yesterday as we were waiting, I had a lady approach me and ask if I had a child being treated here. And I said yes, she said my sister does too, and pointed to a lady. It was only their 2nd day here. She was a mess, like I was that day. She was asking questions, and then said her 10 year old doesn't know what he has, and she can't muster to tell him that it's cancer because to him cancer would be synonymous with death. Apparently, they had their parents, grandparents, and aunts and uncles all die from cancer. I felt bad for her, but I told her what everybody else told me. Childhood cancer (leukemia) is a very different bird than adult cancer. And that we decided to embrace the term,and all the others that go with it. To pretend it's something else, is to be afraid of it, to hit it head on is to defeat it. And I know where she is coming from, I had an aunt die of breast cancer when I was 18. It was a horrible death and long and drawn out. She left two babies behind, and I know that killed her spirit. So cancer was always a very fearful term to me too. And not that it isn't scary and that I want to downplay it, but that was a long time ago in terms of research and science, I see the proof in my friend I mentioned early. And it's a different cancer that Lucy is battling. Plus kids don't have a negative mind set unless you mold them to have one. And I strongly believe that a positive outlook and attitude is half the fight. And I'm not alone in that. The human mind and spirit is so powerful that they are doing studies on how it affects the cure rate. That's why we are at the rmdh and not in the hospital. Thats why the protocol is designed to be "at home" treatment, and that's why the
Hospital is centered around catering to
Kids and keeping normal activities intertwined with cancer. I hope that mom sees that, and trusts her child to know the truth so he has the tools to fight this. 

Lucy's Hope Pictures

Taken by http://www.imaginatephotography.com/

 Lucy's Hope Photo session

Memphis Trips, Birthdays, and Dex

So I don't write any blogs for at least a week and half, and then in two days I do three of them....lolzzz  obviously had some passion stewing inside me, huh?  I promise not place any type of positions on this post regarding politics or naked barbies ;)  This is all about "being inside the Weber house".  Its quite interesting inside this house.  Unconventional at times, I'll admit.  Sometimes we should be nominated for parents of the year,other times, we give ourselves big fat F's for parenting.  Zach and I were reminiscing the other day about all of our failed parenting attempts.  We were laughing so hard, we were crying. None of the things we have done that have resulted in a grade of an "F" were intentional, they were just based on the fact that we are inexperienced.  Kinda like when we first became parents.  I bought "What to expect when you are expecting" and "What to expect the First Year", guess what I got out of both of those books?  Well...usually I'd be yelling to Zach "what the hell chapter covers this?  I don't remember reading anything about this in the books!"  ha!! I think nobody tells you about what its like to bring a newborn home because you'll never do it.  And I think you are so tired and forget about the first one, so you get pregnant with the second one, because if you remembered the hell and lack of sleep, you'd never have more than one kid.  hehehehe  And don't even get me started on nursing.  All I read in the book was how natural it was, and words like "latching" and "the let down of the milk".  Nobody told me anything about bawling my eyes out the first two weeks why I was doing it because of the pain and time it took. What the heck is natural about that?
So...as I was saying, this house is interesting.  We are learning all over again.  Having a child with cancer is like having a newborn.  We need a book..."What to expect when you get hit with the unexpected......and it sucks".  That's what I would name my book.
Our latest education came in the form of numbers.  We had been pretty fortunate in that Lucy's counts were pretty stable and predictable.  That was until we expected them to be stable and predictable.  Then they just went south.  Well, we headed to Memphis anyhow with an ANC of 380 (must have 500 to do lumbar puncture).  I wasn't comfortable with it.  I was afraid we would get there, and they would still be low and we would either turn around and come home...or Pui would make us stay until the numbers came up.  Then something happened.  We had a two day appointment schedule so we had to leave a day early and do a hotel half way.  And as I was taking a picture of Lucy, I noticed something.  There was a huge ring of light around her head.  She has had these in other pictures as well.  Not all of them, and with different cameras, same lighting, etc etc.  I call it her "friend".  Zach thinks I'm crazy.  But it hit me...the entire time her counts were low, I don't have one picture with that aura surrounding her.  I looked at Zach and said "she'll make counts, she'll be over 1000".  He said "Why do you think that?"  I said "because her friend is back".  Guess what....counts were over 1000 ;)  So we did get procedure at Memphis and she did great.  We also got a call on our way home that her spinal came back clear and perfect.  We needed that call.  We had to have so many in a row free and clear since she had a bad one a few months ago.  She now has 78 more weeks of treatment and only ONE spinal left with chemo.  That's right...just one left.  woo hoo!  After that one in March, we will go to Memphis every 16 weeks for spinals to just check and make sure there is no leukemia cells in there.  so we are almost to one milestone...yay!
We also celebrated a birthday this week.  Zach turned 30.  We had a much better party and time than last year.  Last year we were forced to celebrate a day early at the Ronald McDonald House, and Lucy was in the most intense phase of treatment.  It still gives me butterflies to think of that time.  We made sure we had great decorations and played games.  We had pizza and cake.  The kids had a great time, and it was nice to celebrate at home.
And last but not least....we just got through another dex pulse.  UGH those are horrid.  The first day was horrible because Lucy just cried and cried for no reason.  We couldn't comfort her in any way.  She just had to go to her room for 45 minutes and cry.  Then after that, it got a little better.  She still eats a lot, but it seems as if its not as much as before.  She eats out of boredom.  The thing that kills me about the dex pulses is how horrible she feels.  She gets vincristine at the same time and that is the chemo that causes her the most pain, so the dex intensifies that. She doesn't understand and quite frankly, I don't know how to explain it.  She lays on the couch most of the time and has "dex" eyes.  they are dark sunken in eyes.  She doesn't sleep well.  But....we made it through another pulse!!  yay!!
We are on week 42 of treatment and at week 69 she goes to 1/2 dose of dex, and at week 100 no dex..so every pulse down gets us closer to our goal.
Whew!  that was a lot of typing the last few days...sometimes we get so busy I forget to keep you all updated so sorry to bunch it all into two days.  Well, I'm off to see what else comes up in our household that is unexpected....
PS...we did have an unexpected ER visit.  Lucy hit the corner of her eye on an end table JUST as Zach and I were walking out the door for a date last Friday night.  She is fine...and the only thing that was hurt was her pride.  We forgot to grab White to take to the ER with us...that was what crushed her.  She ended up with a nice shiner..we tried to teach her to that when people asked what happened to tell them "You should see the other guy".  She wouldn't.  She told them the truth...she said I was doing something I wasn't suppose to.  And we went on our date!!  We told her nice try to keep us home, but she'd have to come up with something a bit more serious next time  :)  I told you were weren't right sometimes....:F for empathy on that one...ha

Mr Becker has apologized

The entry I posted yesterday will not lead you to the original post made by Mr. Becker, but instead it will lead you to an apology by him. And of course a lot of back tracking and whys in regards to his original post.  Well, a little to late...a little to little a little to late actually.
The comment he makes is that he was trying to get the point across that social media should not be the means for bullying companies into doing things. I ask why not?  Social media is ran by individuals. It is run by you and me.  It's content is controlled by what we decide to blog, post, comment, or link to.  So in essence why shouldn't companies be bullied by the consumers?  Is it better to say a lobbyist is fighting for their company's best interests?  Wouldn't that too be considered bullying?  heck our government lives on bullying.  They want a bill to pass, they package it with a bunch of other little bills that have nothing to do with the original intent to get people to vote for their interests. And we call that politics?  So why does Mr. Becker and the ACS want to talk about social media and link the word bullying to it.  These mothers did no such thing.  They started a campaign, a petition, if you will.  They didn't ask Mattel to mass market a bald Barbie, they asked for it to be an option for purchase for those who may want it and to give proceeds to a worthwhile cause such as childhood cancer research.  And even if they did "pressure" Mattel, big deal.  Mattel is a big girl and Barbie wears big girl panties...sometimes.  Let them deal with their own image, brand, and press.  The only vested interest I can think of that the ACS had in this involvement was that they would not be the ones receiving the funds from it.
And one more thing, social media is here to stay.  And more and more smart companies recognize this and are using it to their advantage to advertise to young consumers, even us older consumers ;)  So to say this would not work is ridiculous. Actually, what it has done is brought WAY more attention to the issue than it would have gotten prior to the ACS's blog post.  And for Mattel's official statement to be something like "we don't take ideas from people for our products" is also insane.  What?  do you not know how capitalism works?  That wasn't their official statement, but pretty close.  And you know Barbie already has its issues with being disproportional to real life.  That bald barbie would fall right over cuz her boobs are too big!  So, maybe they need to rethink their marketing.  Anyhow, I've gone off track, like always.
The apology is way worse than the blog post.  I hope he got his ass chewed off when he went into the office today.  And I sincerely hope this brought more awareness to childhood cancer.  It is not rare, sad to say.  We had three new families in central Illinois come to clinic two weeks ago.  So while Lucy didn't even want a bald barbie, or any barbie for that matter, I still found his apology to be distasteful.  If you have an opinion, and you want to shout it out and have a huge company behind you to give you the means to do so, then do it, just make sure its exactly what you want to say, and how you want to say it.  oh....and do your research a little bit better too. Then stand behind your position.  Right or wrong.  I have a lot of opinions that I know people don't agree with, but if I feel strongly about it and can't be swayed any other way, I say it, and I stick with it.    That is all the time I will give this...I promise.  Good afternoon.

Disappointed with the ACS

We have had a busy few weeks, and I do have a lot to journal on.  Matter of fact, made myself a nice cup of chai tea, got my net book out, sat in my favorite chair and was ready to blog away this evening after the kids went to bed.  Then I read an article and it outraged me.  So now I must share with the world the article so you are free to form your own opinion.  I will not, however, be doing a relay for life team this year nor will I support ACS anymore.  I already knew 3% went to childhood cancer funding, and I knew that a huge amount of their monies are spent in administrative costs, but I still believed in their idea and the people that host and run relays.  And they covered a broad spectrum of the beast.  So while I knew they weren't the best organization out there, I still had hope for them.  Well, I think what little I had is gone.
here is why:  Bald Barbie Demand is an over reach

Let me tell you why this enraged me. The person who wrote this blog post and representing ACS has missed the point.  Not to mention they wouldn't profit off this. And childhood cancer is about as rare as breast cancer...in that it is NOT rare at all. And they are not asking Mattel to mass produce. they are asking for a specific audience for the product. I know the mothers who are campaigning for this and this made me have a little less respect for the ACS.

After I sleep off my rage, I promise to blog on more happy things and all things Lucy ;)  g'night friends

Low counts and Cabin Fever

wow!  It's been a long time since I blogged.  We have been busy having both kids home for the holidays.  Plus I have to be totally honest, I haven't been in the best of moods.  Been feeling a little down, and I hate blogging during that time, I don't want to be a downer to everybody and most importantly, I don't want any negative energy in this house.  We have had our fair share.
So Xmas went off without a hitch.  Kids had a great time, but I have to admit, Lucy didn't have the same reaction as Jack and didn't seem to be as amazed with the gifts on xmas day.  She has been getting so many gifts over the past year, and her birthday was a week before xmas, so I think the novelty has worn off a bit.  Its not that she doesn't appreciate things, but its like when you candy everyday, pretty soon candy isn't so special and as enjoyable.  So Zach and I did decide, no more gifts or packages.  We will hold them and give them more spread out if they come.  The other thing different this year is the fact that our family gatherings were dependent upon Lucy's counts.  Which were not good.  Vincristine seems to really take a lot out of her.  They are still low and she is neutropenic still today.  Last week we didn't do chemo all week, this week is only 1/2 dose, and then a recheck at the end of the week. We are supposed to be going to Memphis for a spinal next week, but I don't see that happening if her numbers don't raise.  And looking at her other numbers (monocytes), I don't see that happening.  Plus not going anywhere is giving her and all of us cabin fever.  With her having no immune system, we are trying to limit how much we go out and where we go.  We have been lucky that Jack is on xmas break, but that ends Thursday.
This New Years was MUCH better than last year.  Last year we sat in a tiny room at St. Jude, having only been aware of Lucy's cancer for less than 7 days, so we were still in shock.  She was running a fever, which is common for kids on chemo in the beginning, so we couldn't join in the party down stairs.  So I remember going around and collecting all the balloons I could find in the hospital and bringing them up to the room.  I may have already told this story, sorry if its a repeat. Its ones of those memories that seems to be burned into my mind.  I can still see her precious little face and remember the smell of the room.  This year we had some friends over and we played some games and let the kids stay up til 11 to watch the ball drop.  It was fun, and nice.
This year, we have decided WILL be better than last.  Our life is still a bit different (to say the least lol), but we are going to try to make the best out of it.  So far that theory is being tested well.  With Lucy's counts not wanting to rise, and the roller coaster of being on/off chemo, it sure is testing us to be positive :)
As for New year's Resolutions, there are none in this house! I have goals, but I decided success looked much better when you achieve a goal and not fail at a resolution.  Resolve to change isn't so easy.  Change comes in 5 stages, so for people to think they can make a resolution and change it on the first day of the year, is a bit ridiculous, actually.  Then when people fail at change, they tend have a negative attitude about the change they seek.  I prefer to be goal orientated.  And I intend on reaching those goals one baby step at time.  It may take me longer than a year, but I will try my best.  Zach and I had a conversation about the new year and how everything seems to remind us of last year as milestones occur.  Its like we actually have the diagnosis more on our minds than we did on our cancerversary day.  We find ourselves looking at pictures and reading our journal from this time last year.  What a difference a year has made, and I wouldn't have believed you if you told me last year that we would be in the spot we are.  I had a hard time looking towards the future, and still do at times.  I try to live in the now....but I do find that I can plan a little better now than a year ago.  I plan with the expectation that things will change, and oddly, I'm okay with that.
So here are some dramatic changes from last year that I would like to share with you.
1.  Lucy's hair isn't falling out (thins from time to time), its growing back and is as crazy as it was when she was a baby.  Its starting to get thicker and longer every day.
2.  Jack and Lucy are fighting every day instead of being separated from one another
3.  I don't cry anymore as much as I used to
4.  Zach and I have a different connection.  Its hard to explain, but I think I fell in love with him all over again but for very different reasons.
5.  Taco is home and fat :)
6.  Jack giggles..its a new laugh and its contagious...I love it
7.  We are cold.  LOL  Last year we were in Memphis which is much warmer than Illinois, I dont care what the temperature is.
8.  We have a specific plan for treatment, know what to expect, and are much better at learning to go with the flow
9.  we have a new appreciation for our life.  period.
10.  I still hate cleaning, but have found that a shop vac is an awesome tool to use INSIDE the house ;)