Flying Miss Lucy: part Deux. & Clark W. Griswald has nothing on this family

Yesterday Zach had the pleasure of flying home with Miss Lucy after her starting dex.  It seems that the demon steroid has a quicker affect the more we take it.  It used to take a few days to "settle in". Now it apparently only take a couple doses to get it in her blood and reveal satan.  And if you think I'm kidding, I bet several hundred people at the Atlanta airport would confirm.  As well as Zach of course.  Our children have fits and what not, but for the most part, they are well behaved in public.....most of the time...not on dex!  So, Daddy and Lucy fly from Memphis to Atlanta so they can catch their connecting flight to bring them to bloomington.  They arrive at one terminal and their connecting flight is, of course, at the other end of the airport.  So they make it to their gate with about 15 minutes to spare before getting on the plane.  Lucy is hungry (she's on steroids so she is ALWAYS hungry), daddy looks around.  He's got a wendys, a steak joint, and a hot dog place that has hotdogs sitting under a warmer that look as if they were left over from last night.  He thinks about it, and says "ok, lets do wendy's."  She throws this massive fit because she didn't want Wendy's.  She wanted something else.  So she threw a fit..in the middle of the aisle...at the airport.  Zach said he just stood there and protected her from people walking over her as she did the worm on the floor.  And people just walked right by, some stared and some just didn't even pay mind.  The picture is her finally just sitting in the middle of the floor.  So she looks up at him and says "I'm done throwing my fit".  So he starts to tell her why they have to go to Wendy's and they proceed to go and come to find out, all she wanted was french fries anyhow.  Then they board the plane....their seats are not even close to each other.  they are on opposite sides of the plane.  Zach explains to the flight attendant...she has cancer and she's on steroids...she needs meds and I have to sit next to her.  He said it was a huge mess because their was another baby on the plane and apparently there is a rule about how many small children can sit on the same side of the plane.  So they had to move everybody around.  Then Zach had to give Lucy her meds, and of course she was not cooperating.  I think this may have happened before they boarded, so I may have the timeline off, but at this point what does it matter.  Anyhow, she won't take it.  Again, she's being defiant.  So Zach very sternly says "you do NOT have options here, you HAVE to take your medicine".  A lady looks over at Zach and says "well I think your little boy is very well behaved" in a judgmental tone as to criticize Zach for being so stern.  Zach says "SHE is NOT a little boy, her name is Lucy and she has cancer and has medicine she HAS to take RIGHT now".  The lady turned her head away after she heard the name Lucy.  People mind your own business.
So.....while Zach and Lucy are flying from Atlanta to Bloomington, Jack says his throat hurts and he doesn't feel well, actually he had been saying it the night before and all morning, but I checked all morning and there was no fever.  So when he told me again, I checked and sure enough 102.4 fever.  SHIT!  Lucy is on her way home after a hard hitting chemo, she's on dex, which means compromised immune system to follow in a couple of days, and Jack is sick.  So I take him to the walk in clinic.  Guess who our doctor is.  The SAME lady who told me Lucy had a virus when I took her in the day after xmas and that she would be fine.  Which of course, we all know the ending to that prediction.  Good thing I took her to the ER for a second opinion.  Anyhow, She looks at Jack's throat, checks his lymph nodes and says it definitely looks like strep throat.  Writes us a script for antibiotics and I'm on my way.  So I go and get his meds, and call St. Jude to see how we should handle this situation.  they said to keep the two apart and bleach the house before Lucy comes home.  So, I make Zach and Lucy a reservation at the Holiday Inn by the airport.  They, by the way, were AWESOME and very accommodating.  So, Zach lands, and I tell him the shuttle will be there to pick him up.  So about 15 minutes later, I get this text "the luggage carousel stopped, and we still don't have our bag".  OMG!!  are we seriously living in a bad dream???  So Zach proceeds to go to the counter, and ask where his bag is.  At this moment, dex kicks in, and Lucy decides to hit Zach with baby white.  and scream....the entire time he's trying to figure out where his bag is.  Well, they find his bag, its is Marlyand.  Awesome.  So, he gets on the shuttle and goes to the hotel.  I proceed to load up Jack, who is still running a fever, and bring him a packed bag of clothes and all the essentials, then return home.  It doesn't end yet...you may want to go get a drink or a snack..... :)
So zach and lucy go down to the restaurant to eat, Baxters. Its a fancy type of restaurant. We took the kids there once...never again..but of course he has no choice in this matter.  Lucy proceeds to jump up and down on the seat yelling "yippee" over and over.  Now I know some of you might be saying "you need to discipline that child".  Well, its IMPOSSIBLE to do so on dex in public, and I'm certain those of you with a child on dex are probably shaking your head in agreement.  So then she gets her food.  She ordered chicken fingers and french fries.  She yells at the waiter. I HATE chicken and fries.  Zach apologizes and tells him to go on, he'll take care of her.  So Zach eats, Lucy doesn't.  So the waiter comes back over and asks if she is done, and Zach says "can I have a box". Well being a fancy type of restaurant, they wrap up your food for you in the back, so the waiter proceeds to taker her plate away.  Zach said all of a sudden, Satan appears.  He said he didn't even recognize her voice when she yelled at the waiter "I"M NOT DONE YET".  Again, he apologizes and says if you just get me a box, we will get out of your hair.  So while the waiter is getting the box, Lucy proceeds to cram the food in her mouth.  All while saying "I hate chicken, I hate fries", but she eats it all.  WHEW!  I think the man deserves a medal for that!!  He then takes her back to the room and they do not leave for the rest of the night.
I continue to take care of Jack because I firmly believe he should have his mom if he's sick.  Jack finally falls asleep and that's when I start cleaning.  I get out the bleach, the clorox wipes, and both of my steamers and go to town.  I don't miss a door knob, light switch or anything.  By time I go to bed, I'm sick to my stomach from all the bleach smells in my house. I check on Jack, and he is sweating and feels much better. Phew...must have broken his fever.
So at 5:30 am, I'm woken up by "MOM".....I go into Jack's room, he says "I feel much better".  I feel him and he's a bit warm, maybe a low grade fever, but he does feel better.  He says he is thirsty.  Of course he is, he was sweating last night.  So he gets a big glass of water and chugs it down.  And then I give him ibuprofen for his low grade fever.  3 minutes later, he pukes.  3 times.  On my freshly steamed floor.  He says "oh, I feel better now".  LOL  So I tell him to go lay down and I clean up the puke.  Put the towels and blanket he yacked on in the washing machine, turn on the hot water, guess what....doesn't work.  So I switch it to cold, and it works like a charm.  So I thought maybe it needed time to warm up, so I switch it hot again...nothing but a weird loud sound.  So I wash the stuff in cold.  Then I wait 20 minutes, give him some more meds, and a sip of water.  So far so good...AND I just got done steaming the floors again and going around with my clorox wipes to everything he touched.
So for flying miss Lucy...Zach wins HANDS down
And for the Griswalds.....I think the Webers have beat you out in terms of Murphy's law...you've got nothing on this family.

We have officially started Reinduction 2

Lucy got her numbers yesterday and they were good!! Woo hoo! She was able to get her spinal with chemo and her peg. And that starts our next phase. She is also on dex now for 7 days off 5 and then back on 8 days. So that sucks. We hate dex! But the good news is she gets to do RI2 all at home at our affiliate. And yesterday Zach sent me her roadmap all the way to week 36! That was so exciting to see. We are currently in week 17, so when we hit week 20, we are counting down from 100! And our next phase is easy enough, as far as chemo goes. She basically gets methotrexate (MTX) every week for 4 weeks then one week of dex and vincristine, and nightly chemo. So after these three weeks we will officially be in maintenance! Just have to watch her numbers after she comes out of this 3 week period. She also only goes back to Memphis twice for the rest of 2011!! She goes in septemeber and november!
Wow jack starts 1st grade and we will finally be in a more manageable state of treatment. What a nice feeling. And we can semi-plan. Still not fully plan because sometimes after RI2, their numbers take a dive and awhile to rebound. But I'll take semi!! Lol
And there is a strong possibility she will get to go back to ballet. I hope so. She needs that interaction and loves to dance. We haven't been able to find a preschool yet that is just a couple days a week for a couple hours, so we are ordering a home school kit I think. I'm still looking.
So the issue at hand today is to get the house scrubbed down before Lucy comes home. Jack has had a sore throat and was even up in the middle of the night with it :( hoping it's just a cold. If he were to get strep, they would put the whole family on antibiotics. Odd I know. But preventative. Although lucy gets MTX next week and it's the one
Chemo that knocks strep out. So we may get lucky. And of course it could be a cold. He's had No fever and the bck of his throat looks ok for now. So we shall see.
We also got a ton more items for the silent auction and I'm super excited to see that is all coming together. And I can't remember if I posted about our telethon video yet, bit we received that in The mail and we got to watch it. The kids liked it and madee play it over and over. They asked why I was crying in it. And they would say "oh poor mommy". Such little empathizers.
I also learned this week of a family from Peoria who are in day 10 of their treatment for their daughter laci. Boy did the memories start flooding back to me. It was almost as if I could remember the exact day, all the sounds, and smells of our first days at st Jude. Her caringbridge is lacikowal if you'd like to leave words of encouragement. Her dx is the same as Lucy's. She is 4 and has a twin sister at home. How hard that must be to be separated from your birth buddy.did you know that everyday in the us 45 kids will be diagnosed with leukemia, and that's just Lucy's type. Amazing how many of those are from central Illinois. We def see most of these childhood cancers as being regional. Like I talked to a lady recently from Sarasota, fl who said in their area there are a ton of teenage kids that are diagnosed with ALL. And from Louisiana, I've seen the biggest diagnosis of brain cancers. Not that there aren't diagnosis' all over, they just seem to be concentrated regions. Amazing, huh? All down the Mississippi river. Makes You wonder.

Audience reactions to the Film that will be HERE on August 11th! AMAZING

You can now purchase tickets at http://www.thecastletheatre.com/

ANC, CBC, WBC, NBC, It's all a bunch of BS?!!??

I can honestly say I hate numbers days. These are the days where she gets her CBC with a differential. Basically it tells us how her blood, bone marrow, and body is doing. The numbers we are most concerned with Are her WBC (white blood count), platelets (these normally are destroyed by leukemia cells and pushed out), hemoglobin (red blood cells that carry oxygen to her body) when these are low she usually needs a blood transfusion. Chemo can knock these out as well as leukemia cells. ANC (absolute nuetrophils) this is a type of cell within her WBC that is responsible for helping her body heal from infections, colds, etc. Chemo pretty much knocks these out, and they want them to stay low so cancer cells can't thrive, but not too low all the time where it puts you at risk. Whenever this number is below 500, you are considered neutropenic. Basically, fevers and infections can be fatal. Your body doesn't have the armor to fight things off. And right now we are sitting at an ANC of 400. That also means that it may delay some of her chemo for reinduction 2 next week. It may also make our trip to Memphis a little longer than anticipated.  Dr. Pui is always unpredictable, so we won't know for sure until next Wednesday.  And we are also struggling with whether or not to have her fly down now (as planned) or drive down.  If her numbers keep dropping, I definitely don't want to expose her to all those people in the airport and on the airplane for that long amount of time.  Mask or no mask.
Ok, so the NBC I threw in the title was just for laughs.  I swear I wish that these numbers didn't stress me out so much, I know that chemo can make them do funny and odd things, and need to remember that, but I always have that faint idea far in the back of my brain about relapse.  Totally stinks.  I had a good melt down last night and soaked my pillow with tears so I feel better now this morning.  We are back again at one day at a time and not knowing so I think that is what stresses me out the most.  We don't know how long one or both of us will be out of work again, we don't know if we should both go to Memphis and get somebody to stay here with Jack, or if she is expected to stay for the entire 3 weeks, do we make multiple trips to visit with our without Jack.  Its just frustrating, and I don't mean to whine, but sometimes, I want to yell at somebody!  And sometime I get really angry that she got cancer.  I thought that would have passed by now, but last night I was super angry.  It just hit me out of the blue.
Well, on a lighter note, our benefit we are having on August 11th is coming together nicely, and now we are even more grateful to the folks at Dying to Do Letterman, The Castle Theatre, Farmaggedon, and the Missfits for helping us put this together, we could NOT have done it on our own.  And we are thankful since we are coming into a period where work is uncertain again, thus money will be uncertain.  And thus far, people have been wonderful to us with helping out so this is one less thing we have to stress out about.  Plus I'm super excited to meet Steve Mazan and see the film. I get goosebumps when I hear people talk about it who have seen it or when I read reviews.  You can also now purchase tickets through the Castle's website at http://www.thecastletheatre.com/ And if you can't make it, but think of somebody who could really use some inspiration, please pass on this information.  I hear people walk away with "a life changing" experience.
I will keep everybody updated after Lucy gets to Memphis on Wednesday as to what Dr. Pui decides.
Thank you for your continued support.  It helps when I am having a bad day to see notes of encouragement.

Wanna win a $500 iPad for $25?

We have sold 34 tickets for this in just 2 days!! Wow!! If you want to buy a ticket, just shoot me an email webershawna@gmail.com. You do NOT have to attend the benefit or even live close! We can ship! 66 tickets left.

Where can I buy tickets for the august 11 benefit?

You can now go online and purchase tickets here: http://dyingtosupportteamlucy.eventbrite.com/


We are also selling raffle tickets all the way up to the benefit for a 16 gig iPad 2. You do not need to attend the benefit to win. We are only selling 100 tickets for this and they are $25 each. Email me for more information webershawna@gmail.com

We have already had lots of exciting items donated for the silent auction and I can't wait to share those with you soon!!
It is recommended you buy tickets in advance since we have a limited capacity for this event. Thank you!!

Help! A wonderful video my friend Patty made for us--warning tear jerker

Clinic day week 16 out of 120

Yesterday was a LONG clinic day! And it was the most nerve racking. What was suppose to be a "simple" day of a push of methotrexate, has me on edge and just reminded me, or rather, catapulted me back to our life of reality. Our affiliate is going to all electronic records, and yesterday was day 2. So everything that comes along with that seemed to happen and we were at clinic forever. I'm excited they are going to electronic records because now Memphis gets up to date records on Lucy ASAP, but I felt for all the nurses who were trying to maneuver around the newness, the issues, the password lock outs, etc.
After Lucy was accessed, we waited longer than normal for her blood counts. I finally asked when she was going to get her chemo and was told they had emailed Dr Pui and were waiting to hear back from him. Of course, I didn't know why they had emailed him or what was wrong, so I immediately panicked and actually almost started crying. My heart was racing, and to be frank I was scared shitless. I didn't have her counts yet so that made the situation worse. Finally, I got my answer. Her ANC ( blood count that tells how her body can fight colds and infections)had plummeted from 2800 the week before to 620. And we were only on 1/2 dose chemo all week so I couldn't figure out why it had dropped. We also noticed she was sleeping a lot more this past week than normal. Relapse is always something in the back of my mind, so of course I was totally freaking out. Plus next week starts our reinduction 2 and if her counts aren't above 500 they will delay it. And at this stage, we want nothing o be delayed. And it's not "normal" for Lucy's counts to drop just by chemo itself. Plus we were also expecting to do reinduction at home but this may buy us a few weeks in Memphis if her counts don't go up. Which sucks obviously because again, our family has to be separated for a while and numerous trips to Memphis for visiting will have to be made. It's like just as we were settling in to our new normal and getting comfortable, bam! Reality hits us upside the head to say "hey!! Your daughter has cancer!!"
Dr Pui finally emailed back and said he wanted Lucy to go ahead and get a full dose of chemo and stay on a full dose all week and return to Memphis the following week. So we are happy to be on a full dose because we don't want one cancer cell to get by. But we aren't sure if she will be getting reinduction next week because a full dose chemo is likely to crash her numbers more. I asked why this happens or how it could happen. And was told she could be fighting a virus or sometimes their little body's just get worn out by chemo and this happens. Her WBC is down and her platelets are up, so that is one good thing. With leukemia the WBC are usually super high and platelets low when it strikes. Man what I would give to NOT have had to learn all of these things.
There was an article published recently that parents of cancer children suffer post traumatic stress disorder. The research stated that like military sent to war, parents have the same symptoms and suffer from
The disease for a very long time. And when I read it, I was thinking "no shit". Zach likened it to a war zone without a doubt. The Ronald McDonald house and st Jude are like war zones, but instead of men and women dying, children are dying all around you. The enemy is cancer, and the weapons are chemo and doctors. And like many war heroes who come home and live their nightmares over and over, parents are constantly worried about the return of the enemy. Even years after a child is done with treatment. It is ALWAYS in the back of our mind and it is the scariest feeling I have ever had my entire life. It makes my stomach turn, it gives me a headache and makes me physically ill. Even with a positive attitude, it lingers. And yesterday wasn't just the clinic visit that had me on edge, Lucy also asked me "if I get cancer again, I'm going to die, right?" I stood there frozen with fear on how to answer this question. I don't want to lie because we don't know what would happen if the leukemia came back. But in another sense, I truly believe she is going to be fine. And I dont want to surround her with any negative energy or any type of worry while she is fighting her fight. I asked her where she heard this, and she said Jack told her while they were swinging one day. Ok so that made it worse! Now I'm realizing my son is worrying about this! I Then asked Lucy if she knew what "die" meant, to which her reply was "no". So Zach and I talked with both kids about this. We tried to explain to jack that the likelihood of her cancer coming back is like when we do coin tosses and try to guess what it will land on. we said he could throw that coin up 100 times and 99 times his guess will be right, and one time it will be wrong. So for him to think of the likelihood of her cancer returning to That one that is wrong. He understood that. we also asked him where he got that idea? He said when a boy's mom at school died it was because her cancer came back. So we had to explain that some people have cancer come back many times and don't die. And then when asked if he thought of this often and if he was scared, he said "well, yes". So that broke my heart. He has never expressed this fear to me before and I've tried to talk to him about things before. He also has a better idea of what death is. We are not religious people, so for us to explain death is a little harder. Zach and I even have two very different schools of thought on this one, which makes it more interesting. We tried to simplify it for him by saying when a person dies, they don't ever come back. Some people believe you go to heaven, and others believe you go to a place where your heart lives, but not your body. I wish I could have had this conversation with him about a family pet or something and not so close to home. So on top of a long clinic day where it exasperated our fears, we had to come home and answer the hard questions for our children that really nobody has any answers to.
Boy, yesterday sure was a long day.

Dear Jack

Happy birthday bud! I can't believe you are now 6 years old! I still remember the day you were born like yesterday. I remember exactly how I felt and every minute of what was going on up until your delivery. We were so anxious to finally meet you and eager to see what you looked like. I had an image in mind what I thought you'd look like and you blew that out of the water when you came out with those huge chubby cheeks looking more handsome
Than I could ever imagine. You were also very forgiving to your parents for their lack of know how with a new born! I think it took both daddy and I at least 30 minutes to change your diaper and dress you to come home. We were nervous we were going to break you and giggling over how wrong we were doing everything.
We did a Lot of things wrong that first and second year as parents, heck we still make mistakes and you being the first child seem to get the brunt of those mistakes, yet you are growing up to be a kind, gentle person with loads of compassion and friendliness for others.you have taught me about unconditional love and for that I thank you.
I also remember the day lucy was born and when we brought her home, I was so worried about you. I didn't want you to feel neglected or left out. And you were a champ about it all! You loved your sister and would surround her with all your toys (something that has seemed to cease as you both get older ;) ). You also kept asking when she could play with you and start talking. You were very patient, something that is an amazing quality for a two year old. And Lucy followed your every movement, always. It wasn't mom or dad she sought out, but it was you. Her big brown eyes always looked at you with amazement. And you could make her laugh like nobody else.
I know this past 7 months have not been easy for you. You had to watch as your parents were crying and not knowing or understanding why. You had to watch mommy and Lucy leave in an ambulance and mommy crying, and you didn't know why.you had to say goodbye to your companion for the past three years not quite understanding why and not knowing how long she would be gone. When we finally came home after many many weeks, you had to get to know the physical appearance of your sister all over again, and you never said one mean thing to her. You have always told her she was beautiful.
I know you have sacrificed a lot of personal time and even some of your favorite activities for what has gone on in our lives, and I thank you for that. I wish I had the language and words to explain to you in a 6 year old way how important you have been in this whole journey.
For all
The times you've had to put up with lucys moodiness due to her medicine, for all the things we couldn't do because of lucys cancer. And that's another thing, I wish I didn't have to tell you at such a young age what cancer was. But just like you have overcome and prevailed all of our "first parent mistakes" and turned out so far to be a wonderful little boy, you are prevailing over our current circumstances, and I don't think any more love could come from
You to your sister. Thank you for being kind, patient, and loving. Happy birthday bud.

More details on up coming benefit

Join us to support Team Lucy! Joke Productions, the Dying to do Letterman Team, and the Castle Theatre (www.thecastletheatre.com) will present a charity screening of the award winning documentary "Dying to do Letterman" (www.dyingtodoletterman.com). Come meet the star of the film, Emmy Award winning comedian Steve Mazan, The McLean County MissFits,   participate in an exciting auction and raffle, and of course, see the movie! Tickets are $25 and can be purchased through The Castle. All proceeds will support Lucy Weber and her family, Team Lucy (www.facebook.com/teamlucy) in their fight against leukemia. Looking forward to seeing you there! Doors open at 6:30 pm, August 11th.  We are also selling raffle tickets to win an Ipad, and you can purchase those before the event and that evening.  You do not need to be present to win!

Team Lucy Benefit August 11 @ The Castle Theatre

So this isn't just ANY benefit.  This is an awesome screening of Dying to Do Letterman that was generously donated by the producers Joke and Biagio.  http://www.jokeandbiagio.com/todays-give-back-benefit-screening-for-team-lucy

There will be more details to come, but for now mark your calendars.  Steve Mazan will be available as well a silent auction, and Team Lucy merchandise.  We are also asking for any donations towards that silent auction.  If you would like to help out in any way, email me at webershawna@gmail.com.

PS....there is a rumor there may be some Mclean County Missfits there too :)

Dying to Introduce Team Lucy to the Beatles

http://vimeo.com/26300958

we have been promoting our new favorite page, Dying to Do Letterman......Lucy and I made a video for them, and they posted it on their site...check it out ;)

Telethon totals

I've already got $335 raised so only $665 to go!! That's pretty cool considering it only really takes 100 people to pledge $10 to reach my goal!! Now I only need 66 more peeps for $10 pledge OR 33 with a $20 pledge. And of course $1000 is a drop in the bucket, did you know that we have already had approx $70,000 in medical bills from The last 6 months of treatment, and that doesn't even count the experimental doses of drugs that lucy takes (they don't bill insurance for that as it's in the millions, we were told one dose of a certain drug she gets cost the same amount as 3 foreign cars) and our co pay would be hovering at about 7,000, and we haven't had to pay a penny. We dont pay for whatever procedures Lucy gets done while at st. Jude, we only cover the costs of local hospital, ambulance fee to Peoria, and any prescription meds we can't get while we are in Memphis or Peoria (which is rare, we have only had two so far). So as you can see we owe them literally a life. Please pass on my donation page listed below. Another fact, for every 1 patient that is treated at st Jude, it impacts approximately 1000 kids in other hospitals around the world. So your donation not only helps Lucy, but it counts towards the 1000 she is representing. Thank you!!

If you could say a prayer

So you all know me well enough by now, if you have been following since day one, that we aren't the "praying" type.  But if you could please do so or send out some positive energy to our friends who are laying their son, Julian to rest to day, I would be much obliged.  I would like for them to be surrounded with as much love and positive energy as possible today, as I'm certain today is probably not going to the hardest of the days, weeks, months to come for them.
We weren't able to make the funeral, and I'm saddened by that, but I have not stopped thinking about them all week, and especially today.  What if it were son? or daughter?

thank you.

And let the fundraising begin

https://waystohelp.stjude.org/sjVPortal/public/displayUserPage.do?programId=501&userId=647830&eventId=168107

You can also view the side of my blog to reach our St. Jude page. We need to raise $1000 before august 6. Tell all your friends and also check into your company's policy on matching donations to charitable causes.

Thank you for helping me help St. Jude continue to provide the best of care to Lucy!

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.