Monday, December 26, 2011

Christmas 2011

Saturday, December 24, 2011

What a wonderful world

Let it be- 2011 in review

The Weber 2011 Christmas Letter

I have never done a Christmas letter before, you know the one where you recap the year you had and talk about each person's accomplishments?  Mostly they are "brag" letters at least that is what I have seen on TV.  I've never actually really gotten one before.  But  I decided to go ahead and give it a shot, and see if I can recap our year month by month in words, and then follow with a picture slide show....so sit back, grab a cup of coffee, maybe a kleenex or two (it is going to be about a 3 year old with cancer and her family), and enjoy my version of our year in review.
Wow!  Almost 52 weeks of treatment is coming up for our Lubelle and family.  52 weeks of chemotherapy, procedures, trips to Memphis, trips to Peoria, many scares, a couple close calls, and lots and lots of therapy for all 4 of us Webers.  It was also a year of isolation and learning to live a new "normal".  Our friends, family, and work had to adjust to our new circumstances, even Taco had to pitch in and help out every now and then. We learned this year about the kindness of strangers, the distance of friends and family, and that Disney World is NOT the great place on Earth, but rather, St. Jude Children's Research Hospital.
We started 2011 off in a hospital room.  A tiny St. Jude hospital room.  Lucy was running a fever and was not able to leave the room to join in the party festivities they were having down stairs.  I still remember her hair was sticking out all over the place (she refused to let us wash it), she had tired eyes, but still managed to pull a smile off to take pictures with baby White and some balloons.  She couldn't get out of bed for more than a few minutes without being exhausted.  A trip to the Juke Box down stairs wore her out, or even to the play room on the same floor.  We would go and return to our room in about 5 minutes.  She loved going to the juke box and listening to the Beatles when she felt good enough.


We spent January and February as a broken family.  Zach and Lucy were in Memphis until the middle of February, and I was back and forth between there and home, and Jack was shuffled from grandma to grandma and finally back home with me.  February was also the month we received the news that our sweet Lucy was cancer free.  No signs of leukemia cells in her bone marrow, spinal fluid, or blood.  We had a lot of fighting to do, but we were heading in the right direction.  Lucy lost her hair in those few weeks, and her spirit seemed to go deep down in side to fight the monster we call cancer.

In February,we were introduced to our affiliate in Peoria and the wonderful staff.  We were nervous to leave Dr. Pui and A clinic in Memphis, but were also ready to come home!  For the remainder of March, April and May we traveled back and forth from Illinois to Memphis many times.  We also got to see a Beatles tribute band, walk in the local relay for life, help with a fundraiser from Jack' school and present St. Jude with a $1000 check.  We went to a ball for the Ronald McDonald House of Memphis and were on the radio to help them raise money.  We also spent our first holiday, Easter, alone in our home instead of having all of our family over.


In June, we had a reprieve from Memphis and just had to visit Peoria every week.  Jack started baseball, the weather was warmer, so Lucy got to go outside more, and we started to become less germophobes. We still stayed pretty much in the confines of our living space.  We also got to do our first fund raiser for St. Jude at a golf outing.
July brought us Jack's 6th birthday, and a trip back to Memphis for another 4 weeks of heavy hitting chemo.  Again, we were separated as a family for most of this time.
August was the start of a new school year for Jack.  He found that he had a love for PE and that first grade was going to rock because he was "in a grade" now.  We also started to notice some emotional issues rising to the surface.  Jack started seeing his first therapist at the ripe age of 6.   Lucy also had a rough august as she wanted to know why she couldn't go to school or daycare to see all of her friends.  We "played" school as much as we could, and that girl breezed through almost an entire year of a curriculum in one month.  Boy how she loved the interaction and keeping her brain busy.
August was also our first St.Jude telethon and we had a comedian come all the way from LA just help our family out.

September was another 4 weeks of hard hitting chemo and a scare at the end of that round with an allergic reaction to a medication.  September also marked the end of all heavy hitting chemo's and put us in long term maintenance that was a treatment protocol that will last us until July of 2013.  September is Childhood cancer awareness month, which I was not aware of until my child got cancer....huh...go figure.  When we close our eyes to the things we do not want to see, they may still be there, but not in the forefront of our daily lives.  Sometimes our eyes are forced open, as ours were.
October the kids had a blast with Halloween, I got to reach out to a lot of people and do some more talking about St Jude and helping to raise awareness and money. October was also another scare.  We received news that there were abnormal cells in Lucy's spinal fluid.  We had to wait 4 weeks to find out if she had relapsed or not.  Longest 4 weeks of my life.  We got good news at the end of our wait, unlike many of the friends we have met along our journey.

November we got back in the swing of things with our new normal.  We did another fundraiser for St. Jude, and actually started maintaining a routine.  Zach, Jack, and I attend therapy on a weekly basis.  Lucy does clinic in Peoria once a week and physical therapy for the damage that the chemo has caused to her legs.  Taco is happy that he is home on a regular basis and not either locked up in his cage or sent off to be with family, although he loved his mini vacations at Uncle Denny and Aunt Cheryl's.  He was King.

Now for what each individual has accomplished for the year.  I'll start with Zach.
Zach is no longer afraid of needles.  He used to pass out at the sight of blood, and now he loves our O+ bags.  Zach has come to the realization that if a 3 year old can get cancer and be on the brink of death, life is too short to worry about anything that doesn't matter.  He is a thrill seeker now.  His plans for 2012 will probably include some sort of bungee jumping or learning to jump from an airplane.  He is no longer afraid of heights.  He has learned a lot about carpentry, water treatment, and chemotherapy.
Me...what have I accomplished over the last year?  I have learned how to write my feelings out in order to get them out of my head and be able to move on day by day.  I have learned to live day by day, something I was never very good at.  I have also found that I love writing, and I always have, and plan on putting that love to good use.  I love to talk about our experience if it helps just one other family.  I want people to be aware. I have learned that I can say what is on my mind and not fear what others will think about me, only how it makes me feel.  I have learned to let go of controlling every situation.  I have learned that I have two very special children who are going to grow up and be strong, productive members of this society based on their experience in the last year.  And I have learned that its the little things in life that matter and give us happiness.
Jack, boy Jack sure has accomplished a lot.  He became a cancer sibling.  Something that nobody would wish upon their children, but yet he did it with such strength.  He learned to deal with his sister while she is on mood altering steroids.  He has learned to be away from his home, family, and his entire life.  Jack has dealt with anger, and is continuing to do so with each therapy session he has.  He has grown up a lot more than just a year in the past year.  He is wise beyond what a 6 year old should have to know.  He learned about death this year, and he learned about life.  Jack is strong, handsome as always, and going to make one lady very happy when he grows up.
Lucy, what has Lucy accomplished?  Well, she beat cancers ass and continues to do so in the most fashionable way.  Lucy also learned to live without many friends and rely on her mom and dad and poor Taco for companionship.  Lucy has learned the names of several different medications and chemos and what each does.  Lucy has bound a group of individuals who don't know one another with her amazing spirit.  She has a following of loyal fans because in reality, Lucy hasn't changed all that much this year.  Sure she lost her hair, and she had to deal with more change than ever before.  But she is the only one out of the 4 of us who doesn't need therapy.  Who understands that cancer sucks, but only for as long as you let it.  Lucy has accomplished fundraising for St. Jude in a large amount, and she has spread awareness to strangers because of her amazing spirit and old soul.  Lucy has become the most grown up 4 year old that I know who can throw down a temper tantrum with the best of them ;)
So this was just a recap of a small part of our entire year.  We learned a lot about life...and death.  We have dealt with more children dying this year than I would have ever imagined my entire would be filled with.  And we have tried to learn to go on, and never forget those precious angels who had an impact on us for the short time they were on Earth.
We are looking forward to 2012.  Every day brings us closer to the end of our treatment.  and Every day allows us to appreciate one another even more, even when the kids are fighting (thank goodness for normal).   So here is to a healthy, happy, and cancer free 2012.......

Love,
The Webers

Sunday, December 18, 2011

Lucy's AG trip

Lucy's tap

Lucy's ballet

Lucy's awards for dance

Happy Birthday to my Lubelle

4 yrs ago, I was so excited to finally meet this little girl who had spent so much time with me for the past 9 months. The first thing I remember is I heard her long before I saw her. She was screaming before they even had her all of the way out of my tummy. I knew then she was a force to be reckoned with. The first thing the doc said was "look at all of that hair!!" this the name hair became her trademark. She was perfect in everyday. We had our boy and girl, our million dollar family.
This year she has two birthdays. The first one is her birth day and the other is her remission day. For the rest of her life, she will have two birthdays. For this birthday, we had a rocking party a our house Friday night. And then took her to American girl doll store Saturday. That was courtesy of Bear Necessities. They are an organization that grants mini wishes to children sick with cancer.
Lucy picked out her bitty baby, accessories, and then we got to have lunch in the cafe. Both White and her new baby had a seat at the table. Jack was a little bored, poor kid. But he was a great big brother for playing along. We took him to the Lego store afterwards. That was about all lucy had the energy for. She is on dex and it wore her out. We wanted to take them
Other places, but didn't want to over exert or overstimulate dex girl. So it was perfect. Bear necessities also provided us a hotel room, so we crashed in there for the rest of the night.
So Lucy got tons of free stuff from this organization that is all AG related. And guess what she did with it all? Gave it to white!! Hahaha matter of fact the poor bitty baby (whose name is curly Shirley) is riding in the back of the van while white is on lucy's lap. Some things will never change ;)
I will post pictures of everything when we get home.

Monday, December 12, 2011

Home

Lucy was released yesterday! Yay!! She ate dinner for me, but still has a bit of diahhrea. Other than the lack of sleep, she was happy to be home. We had Xmas with Zachs mom yesterday, so jack and I went and brought lucy's gifts home to her. That perked her up. The kids played all night with their toys. It was good to see her so happy and not vomiting anymore. I just hope we all stay healthy.
I also did this application on the computer where each kid can get a video email from Santa and he talks to them about their year and uses their name. He asks if they have been good and says he has a machine that can tell him. Well, they "run" the machine on each kid, and I have to say, Lucy was shitting bricks!! Lol she kept saying "I'm so nervous, what list do you think I'm on?" hahahah she must have doubts herself!! Of course, it came up as the nice list, and I hears her sigh relief!! Lol
Btw, I'm only up at 4 am because of the 3 men in my life. Zach and taco because apparently a king size bed isn't big enough. I was squished between the two of them. And jack was up at 3 wanting to open his advent calendar and find our elf, Leroy! Lol I made him go back to bed. He's been up early every day since we got the elf!! Hate to see what time he's up on Xmas day ;) maybe December 26, he will actually sleep!!

Sunday, December 11, 2011

Blood count update

So Lucy's blood work came back, and it looks good (well good for a cancer patient, knowing that their blood work is never "normal").  Her liver enzymes are a little elevated but not horrible, they are pretty normal for a person going through chemo.  So now we wait.  She has been hooked up to IV fluids to ensure no dehydration.  And she did eat breakfast, and so far has kept it down....we shall see.  We are hoping the doc will come in soon and release her.  They think its just a virus. Not stomach flu but other nasty virus.  So I've got clorox wipes out and steam cleaner..although we've all already been exposed so it may be too late.
I just hope its gone by Friday.  We are having a Sgt. Peppers Birthday with a magical mystery tour!  Then this weekend, she got a "bear hug" from an organization that gave her a trip to the American Girl Doll store in Chicago with a hotel room and a personal shopper to pick out her very own doll.  She doesn't know yet....we were going to surprise her.  I hope she's better by then and the rest of us aren't sick!

I'll post again after the doctor comes in and gives us the "official" low down.  thank you for the well wishes.

Lucy went inpatient

So I'm just writing a quick update to let you know that we had to take Lucy to st Jude affiliate in Peoria late last night. She had been vomiting and couldn't keep anything down. It's odd too how it started. Wednesday Morning she woke up and threw up about mid morning and was lethargic all day. She didn't throw up anymore. Then Thursday she did physical therapy and didn't throw up, but was tired all day and just laid around. Then Friday morning she woke up and puked again. She didn't even want to go to dance class she felt so tired. But that was it for the rest of the day. She didn't throw up again, and was a little more sluggish than normal. Then yesterday she threw up again. Then by evening it was becoming more frequent. She couldn't hold down Gatorade. The doc wanted to hook her up to fluids and run blood tests. The last time this happened, her liver enzymes were elevated due to chemo. So last night Zach took her in. She was dry heaving til she fell asleep. As of 1 am, I still haven't heard any news of the blood work. Zach asked if it could be stomach flu, and they said they didn't think so only because she would have had diahrrea and the vomiting wouldn't have been so spread out like that.
Jack was worried sick last night. He was worried for Lucy and kept asking if we had to leave again for a long time
:( I told him no. Poor guy.
I'll post more as soon as we get blood results. And I hope she's better by next week. It's her birthday :( and we all know how sucky our Xmas was last year with getting diagnosed the day after, so I hope all is good and the kids can enjoy the holidays worry free.

Friday, December 9, 2011

What a Busy December!

We have been busy little elves at the Weber house.  I have wanted to blog so many times, and probably really needed to for a stress relief, but every time I have a chance (like right now) something comes up.  As I type, my kids just started fighting.  Had been quiet for the last 30 minutes, until I pull this blog up!  ha!
We are getting ready for xmas and Lucy's bday.  Plus we have had doctor appt for both kids, physical therapy for Lucy, and Jack has had quite a few counseling sessions.  We are almost done and decided NO appt in January with the exception of the usual Tuesday clinic and week long trip to Memphis.
I wanted to post a few pictures of what has been going on around here at our house....enjoy... We have a mischievous Elf running around causing havoc, his name is LeRoy.







Thursday, December 1, 2011

Choices

We have our one year diagnosis anniversary coming up the day after Christmas.  And it was becoming a huge point of anxiety among Zach and I.  We were nervous, and a bit superstitious around what that day means.  Then we talked with our therapist about it, and sometimes, he's so simple, its ridiculous that we didn't get things on our own.  We told him we were stressed out and he asked why.  We said "well, we found out she got cancer that day".  He said "So?"  And when we thought about it, we had no reaction to give him.  He said "why are you giving that day so much power?"  Good question.  He suggested we spin it around and look at the positives from that day not the negatives.  Positives, we thought?  What the hell was positive about the day she got cancer?  Is this man insane?  Come to find out he's actually pretty smart.  He pointed out some very good positives.  That day was the day we were welcomed in the St. Jude family (the best place to be if your child has cancer).  If we had waited a day, we could have not been accepted because they could have had another 3 year old, white, female girl to fill the spot on the research program.  That day was the day we would become linked with the BEST leukemia doctor in the world.  Dr. Pui.  He's world renowned and sought after in many countries.  That day was the day we started healing Lucy.  While the healing part is hard, its healing none the less.  Had we waited any longer, she could have been far worse off in the disease process.  We gave her life by having her treated that day.  So there are a lot of positives from that day if we choose to look for them.  So instead of loathing that day, we have decided to celebrate it.  Its our diagnosis anniversary, and we plan on spending that day as a family and celebrating life.  I wanted to share a story with you that my therapist gave me.  It's a little long, but totally worth the read.  Author unknown.  Once you read it, you will see what I mean about the choices we have in life.  Enjoy ;)


Michael is the kind of guy you love to hate.  He is always in a good mood and always has something positive to say.  When someone would ask him how he was doing he would say “if I was any better I’d be twins”. 
He was a natural motivator.  If an employee was having a bad day, Michael was there telling the employee how they could look at the positive side of the situation.
Seeing this style really made me curious.  So one day I went up to Michael and asked him “I don’t get it!  you can’t be a positive person all of the time.  How do you do it?”
Michael replied “Each morning I wake up and say to myself, you have two choices today.  You can choose to be in a good mood or you can choose to be in a bad mood.  I choose to be in a good mood!  Each time something bad happens, I can choose to be a victim or I can choose to learn from it.  I choose to learn from it.  Every time someone comes to me complaining, I can choose to accept their complaining or I can point out the positive side of life.  I choose the positive side of life”.
“yeah, right, it’s not that easy”, I protested.
“yes, it is,” Michael said.  “Life is about choices.  When you cut away all the junk, every situation is a choice.  You choose how you react to situations.  You choose how people affect your mood.  Your bottom line:  It’s your choice how you live life”.
 
I reflected on what Michael said.  Soon after I left the company to start my own business.  We lost touch, but I often thought about him when I made a choice about life instead of reacting to it.  Several years later, I heard that Michael was involved in a serious accident, falling some 60 feet off a communications tower.  After 18 hours of surgery and weeks of intensive care, Michael was released from the hospital with rods placed in his back.
I saw Michael about 6 months after his accident.  When I asked him how he was he replied, “If I was any better, I’d be twins.  Want to see my scars?” I declined to see his wounds, but I did ask him what went through his mind as the accident took place.  “The first thing that went through my mind was the well-being of my soon to be born daughter”, Michael replied.  “then, as I lay on the ground, I remembered that I had two choices.  I could choose to live or I could choose to die.  I choose to live”
“Weren’t you scared?  Did you lose consciousness?” I asked.  Michael continued “..the paramedics were great.  They kept telling me that I was going to be fine.  But when they wheeled me into the ER, and I saw the expressions on the faces of the doctors and nurses, I really got scared.  In their eyes, I read “he’s a dead man”. I knew that I needed to take action”
“What did you do?” I asked.  “Well, there was this burly nurse shouting questions at me” said Michael.  “She asked if I was allergic to anything.  Yes I replied”  The doctors and nurses stopped working as they waited for my reply.  I took a deep breath and yelled “Gravity”.
Over their laughter, I told them “I am choosing to live.  Operate on me as if I am alive, not dead”. Michael lived thank to the skill of his doctors and nurse, but also because of his amazing attitude.  I learned from him that every day we have the choice to life fully.  Attitude, after all, is everything”.
“Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own”.  After all today is the tomorrow that you worried about yesterday.