Week 26 done....and what a week its been!

Clinic went well on Tuesday. Lucy's counts all doubled (which is what is suppose to happen when she is on Dex), and we didn't get any bad news about her blood work, so that I am thankful for.  We still have to wait until October 19th to see about that spinal tap and what those abnormal cells were.  I hate that we even have any doubt.  I know that Dr. Pui told us it was no big deal and not to worry, but as a parent, I can't help but worry.  I am constantly checking her for symptoms of relapse. UGH.  and looking up everything on the Internet! ha!  that can be a very BAD idea..I do not recommend it.
And we had some more drama regarding our Friday night "date" night.  Zach was NOT getting any better from his concussion, matter of fact, I think he was getting a bit worse.  He was stuttering and nauseous and dizzy all the time.  So we called our family doctor and they told us to go back to the ER as there wasn't much they could do. So we did.  The ER doctor said some of the symptoms were normal for post concussion syndrome and could last days to weeks to months, but the stuttering was not normal.  He referred us to a neurologist, and Zach took a bunch of memory, cognitive, and physical tests.  He didn't so hot...actually failed the memory and cognitive horribly.  So he was put on couch rest for 2 weeks.  Basically he can do NOTHING but mindless activities.  He's not too happy about this, but I told him I would rather have him down for 2 weeks than 2 months.  He also isn't allowed to drive or work..so he's pretty much going insane.
Then we had an issue with Jack getting teased on the bus.  As a parent, I wanted to march on that bus and yell at all those kids.  They were all chanting "chubby cheeks" to him for a couple of days, and he was devastated.  Kids can be so evil.  Plus he is already having some high stress issues, anger and temper issues, and lack of self confidence in some of his abilities, so we didn't need this to add to his plate.  For a 6 year old, he's got more stress than some adults.  I just hope he turns out to be a better rounded adult than a serial killer!  LOL  We did take him to a counselor and he is going to start going regularly.  The school has also been great about helping address the teasing situation.  The principal has zero tolerance for that and he talked to the people responsible for starting the teasing.  Jack said its been pretty good since then, I hope it stays that way.
We are still busy regardless of all the drama.  We do clinic on Tuesdays, ballet and tap on Fridays, Jack is in scouts now, and of course we have more doctor's appt for us and work.  I think we all need a vacation!  I think its better to stay busy so we don't think about the 3 weeks coming up and that it goes by as fast as possible.  I'm tired of holding my breath.
I have one more act of kindness to complete as today is the final day of September.  I have a couple of ideas.  I have done quite a few things this month, and feel really good about it. I think I am going to continue this at least once a month because I realize how much it impacts one person's life, and how good it makes my heart feel.  Plus, we could use all the good karma we can get ;)
well...its almost time for the bus to get here, so I have to get the kiddos set and ready!  Have a good weekend.

3 Days into our DX

I am finding that I am having to go back and read through my caringbridge journal to get a grasp on how to write this book thing...here is my first entry...wow!  it brought back a ton of emotions....(BTW...I'm not sure why this is in all caps! LOL  I don't have caps lock on, and I can't figure out how to change it...sorry about that!)

TUESDAY, DECEMBER 28, 2010 10:46 PM, CST

Today was the longest and yet most satisfying day we have had so far. Waiting and not knowing has been the worst. We now know what Lucy has for sure, her treatment plan,and are slowing accepting the fact that the "c" word is a part of our lives and Lucy forever. We try to say it as often as possible, and let Lucy and jack know that her blood is very sick with cancer bugs. I'm not sure how she feels or what her little three year old mind is thinking. I can say St. Jude is wonderful. We found out we have the BEST doctors in the WORLD! People fight for these doctors and we are fortunate to have landed with them. And of course, once anybody sees that little Beatle loving girl, they fall in love with her like we did the moment we met her. She has a feisty spirit, and we are certain if she knew what "flipping the bird" meant, she would be doing that to her cancer. I cannot believe how our lives have changed in a matter of days. Today she received three surgeries at once. She had a mediport inserted above her heart to help give her chemotherapy and do blood draws so she doesn't have to get "stuck" all the time, she had a spinal tap done to see how many cancer cells are living in her spinal fluid and near her brain, and a bone marrow sample to see the same for what is living in her bones. Good news: so far no cancer cells in her spinal fluid or near her brain. But her bone marrow is saturated. Doc says that is normal, which is why she has already had one treatment of chemo injected in her spine, and is having another put in her IV as I type. What a brave little girl. All of this and she still managed to eat her food like she was inhaling it, and yell at the nurses when they were taking her vitals. She said "I am sleeping, leave me alone!" little booger. Of course, they love her more for that. We also got our temporary housing set up today. We are going to take turns sleeping in a real bed and trying to be "normal" every other day. Our new normal is something that doesn't take long to adjust to when your child has leukemia.

That fateful day

When I started this journal (on caringbridge), I started when we were already in Memphis and were going under way for our treatments.  I never talked about "that day" when we discovered our beautiful little girl had cancer.  Actually, I'm not so certain I even thought about it much, as I wasn't ready.  We were in "go" mode and there wasn't much time for reflection.  As I sit here now and we wait 4 weeks to determine what the rest of our lives are going to be like, I find myself looking back at that day and the early days a lot.  I also see a lot of my "old" Lucy back in her features, so it also strikes a chord with me.  As I'm preparing to decide which direction to go with our book, I have found that I'm struggling with whether or not to go fiction or non-fiction.  And who's point of view do I write from?  And as I think more and more about that fateful day and do some reflecting, I'm finding that I think I should go towards non fiction.  A point of view that is "leukemia for dummies" that represents how every single parent feels during this journey.  And you ask how can I possibly represent or know what every parent feels or goes through?  Well, I have lots of friends in this club now, and when I read their caringbridges, journals and blogs, they are EXACTLY the same as mine.  And I'm not exaggerating.  And I've had parents before me, tell me that when they read my journals, they feel as if they are writing the words they are reading.  Different families, different backgrounds, yet we are all going through the same thing and amazingly cope and have the same feelings.  Anyhow, I'm going to get started on that, and do the first chapter with that in mind and see how it turns out.
But what about that fateful day?  Well, to be honest, I didn't know when we would learn the truth about Lucy's leukemia, but I had a hunch.  A mother's intuition.
About a month prior to diagnosis, I had a horrible dream. I had a dream that Lucy had cancer.  I was crying when I woke up, and I felt so ashamed that I had such a horrible dream about my little girl.  And I didn't want to tell anybody or say it out loud because I felt that would make it true.  And I wanted to know WHY I had that dream.  Well, I know now why I had it.  I had some sneaking suspicions something was wrong with Lucy for some time prior to me taking her to the ER.  She was bruising "weird".  It made me uncomfortable.  And that was it, but it was enough that it sent my subconscious mind into a frenzy, and my maternal instincts kicked in hard.  I have been ashamed to admit that I had that dream.  I know it sounds odd, but I felt in a sense, that it was my fault that she got cancer.  In reality, it was my mind, body, and soul preparing me for something that was to come...my worst nightmare.
It was Christmas Eve, and the weather was starting to get horrible.  The snow was blowing and we had family to visit.  The holidays are always a hectic time for us as we both are products of divorced parents, so that equals more than the traditional family gatherings ;)
We loaded up the kids in the car along with gifts and food we were taking to gatherings and headed out.  First stop was my mom's.  The kids had a blast opening their gifts from grandma, as she always knows EXACTLY the right gift to get for them, and its never over the top. She has a knack for picking out one gift that is perfect.  And then the kids ate a bunch of candy.  We then headed to my dad's, and I remember Lucy threw up on the way out there (he lives about 20 minutes away).  We were certain it was from eating so much candy all day.  That girl cannot turn down a piece of chocolate.  Of course, the one thing we didn't load up was extra clothes, so when we got to my dads, we changed her into one of his shirts, and proceeded with our holiday gathering. She was extra cuddly that day, my sister remembers how she just let people hold her, which is not normal for her.  After we were done with gifts, we headed home in the horrible weather.  We were so thankful to get home and get the kids in their pj's.  Lucy had a bath and I noticed that the spots that were on her face were getting worse.  I had noticed them a couple of days before.  Zach had reminded me that we changed our shampoo and she could have an allergic reaction to it.  I told him that I thought that they were getting worse despite not using the shampoo and that I was taking her to the doctor after the holiday was over.  He told me if it made me feel better, then he was all for it. He was accustom to me being worried and rushing kids to the doctors for every little thing, but this time, my gut was telling me something that my mind refused to believe.  So we tucked the kids in that night with sugar plums dancing in their head.  They were both excited for Santa, but Zach and I still had work to do.  We had to put together Lucy's kitchen and some legos, and headed to bed.  Jack, our early riser, was up probably around 4 am!  LOL  We let Lucy sleep in a bit. She had always been our 12 hour a night sleeper since she was 4 mo old, so it wasn't unusual, although Zach will remember later that she was getting harder and harder to wake up.  So the kids opened all their gifts and then were playing with them like mad.  Lucy had gotten some dress up shoes, which she loved!  you know the cheap plastic kind?  We have wood floors, and she fell hard and hit her head.  She didn't have a bump or anything so we nursed her and she was up and playing in a couple of minutes.  We took a nap that day, and I cooked a ham. We ate dinner and all was well.  Around bed time, she was becoming increasingly irritable and she was throwing up again.  Again...we thought it was because she ate too much candy that day or in fact maybe she actually had the flu.  No fever, so we were leaning towards the candy theory.  I told Zach that the next day, I wanted to go ahead and take her to the walk in clinic to get the spots checked out.  Zach and Jack both get spots on their body when they get strep throat.  Normally, they don't have many other symptoms, so I was sure she had strep throat (again my mind telling me that was all it was).  So we got up the next day and got dressed and Lucy and I headed to the clinic.  By this time, I noticed the spots had spread to her eyelids. We had his mother's xmas later in the afternoon, so the plan was for me to take her to the doctor while Zach cooked the turkey we had so we could eat on it all week, and then we would come home take a nap, and head out to his mom's.
The walk in clinic was pretty dead considering it was the day after xmas, so we got right in and out.  The doctor looked at the spots and said it looked like broken capillaries on her face.  She had asked if she had thrown up lately, and I said yes.  She thought that maybe the spots were from that or that it was just a virus, but the lab wasn't open until Wednesday so we could come back at that time to get labs drawn if she wasn't better.  On the way out, I had the most uneasy feeling, I still remember it to this day even though I cannot put into words what it was.  I called Zach and told him all about what the doctor said.  I said "you know, if its broken capillaries, that doesn't sound so good."  Then we remembered her fall and her throwing up, and we thought maybe it was a concussion.  We didn't even think of it the previous day because it was so long after she fell when she threw up.  I told Zach I would be more comfortable not waiting til Wednesday and told him I wanted to take her to the ER.  He agreed.  When Zach agrees to take a kid to the ER, you know I'm not just a crazy worried mom.  We decided to all go as a family.  So I went home, we packed a bag each for the kids with some of their Christmas gifts and headed to the ER for a post Christmas celebration.
We were seen fairly quick at the ER, regardless of the fact that there were quite a few people in there.  They didn't think she looked so good and wanted to get her blood work done ASAP.  We were fine with that as we thought "ok, we can do this, go home, take a nap, and then head out to his mom's".  They had to take blood, which we were worried about as she had never had that done before, but they had this numbing cream for her skin and she did fabulous.  She didn't even cry.  Here were all 4 of us in this tiny ER room, and we were trying to keep the kids busy, Lucy was getting irritable, and we were all tired.  I remember exactly what happened the moment the doctor came in.  Zach and Jack were coloring in the chairs, and Lucy and I were sitting on the bed.  The doctor said "So, the blood work came back, and we are going to need to send you to St. Francis in Peoria right away".  I looked at Zach and he literally dropped all the stuff in his hands and said "What did you just say?".  I started crying immediately, and Jack said "what's wrong mommy?".  The doctor said that her platelets were severely low, only at 2000, and she needed a transfusion.  I am so glad that we had no clue what that really meant at that time, it wasn't until we got to Memphis days later we learned how critical that really was.  He also said they were the best with kids and felt she needed to go there right away.  He wasn't sure if they would flight her there or use ambulance.  He said that it all depended on what was available. I looked at Zach and whispered "I looked this up online and it could be leukemia".  And I cried.  The doctor left the room to make the transportation arrangements, Zach immediately got on the phone and called his mom to come pick up Jack and the chaos began.  Jack kept asking why I was crying and what was wrong.  I didn't know what to say to him.  I told him I was just worried about Lucy.  We texted and called our family to let them know all that was going on while we waited for the ambulance to gear up to take her.  It was decided I would ride with her to Peoria in the ambulance, Zach would go home and collect a bag.  They told us we would be there a day or two, and Zach's mom came and picked up Jack.
It seemed like it took forever for that ambulance to be ready.  We loaded Lucy up in her car seat and then they put her on a gurney.  I kissed Jack goodbye and told Zach to hurry.  And off we went.  She thought being in the ambulance was pretty cool, and never cried at all.  Matter of fact, she didn't cry until we were on our way to Memphis the next day...but that's later in the story.  She finally fell asleep on the way to Peoria, and I texted my friends and family and posted on Facebook that we could use all the positive thoughts we could get.  I was in shock, scared, and I knew.....Later, months later in fact, Jack would tell the therapist that the day haunts him.  He said he remembers saying goodbye to his mom, who was crying and he didn't know why, and seeing Lucy being whisked away in an ambulance, and then he didn't see us for weeks.  I didnt' realize how much that moment had an impact on him.  And when I think of what he must have been thinking and feeling, I feel heartbroken for him.
Then we got to Peoria........

Geez...guess we just can't seem to catch a break from drama!

Zach and I got to go on a date tonight....bet you will NEVER guess where to!  the ER!!!  woo hoo!!  seriously, as if we haven't had enough to deal with?  So here's the skinny:  Zach was working on the garage/new room, and had bent over to pick up some tools and clean up and came up and bashed his head on an open window (we have the roll out kind).  It was a bad enough hit right smack in the middle of his head that he immediately starting throwing up.  Then all of a sudden it looked as if he might faint.  So I said "pack em up, I'm taking you to the ER".  Luckily, my friend Dana was close by, so she came and stayed with the kids while I took Zach in.  On the way there, he was talking super funny and seeing spots and stuff that wasn't there.  By time we got there, we were both laughing so hard that I'm sure the people there thought we had smoked something or did some other type of drug.  They put Zach in a wheel chair and deemed him a fall risk right off the bat, that made us giggle.  Then during intake, I think the guy didn't know what to think with us cracking jokes about how this was our date night.  Then we explained to him "look we have a little girl with leukemia, and we haven't had a great week with that, so this really was just the icing on the cake".  The guy asked Zach if he felt safe in his home (you know the battered spouse question that they always ask), well Zach being the smart ass he is, got in the guys face and whispered "well, to tell you the truth, I'm not so sure about that one.  See, my wife likes to watch 48 hours mystery where they are always having spouses murder each other, so I think she may be plotting".  Of course I start laughing hysterically....the guy just looks at us.
So they wheel us into the room, and the lady from registration comes in.  Asks for our insurance card and ID, etc etc....Zach says "hey we met our out of pocket deductible, think you can give me a work up?  What else can I sign up to get done today?"  By time the doctor came in, I'm certain they thought we were crazy as we asked if we could please get admitted for a week vacation from cancer and have insurance pay for it?  I know, I know....its our outlet, what can I say.
So they ended up doing a CT scan on Zach.  He has bruising and swelling on his brain, but not bad and no bleeds.  So we were sent home on pain meds, and I am to wake him up every hour.  So no rest for me.  Like I get a lot anyhow.  So that was our date night...and it was kinda nice to be away from cancer for a minute...even if it was dealing with a concussion.
As for Lucy and the blasts found in her spinal fluid, I called about that.  I was confused as I thought blasts were only made in the bone marrow and if they were in spinal fluid, that meant it was because it had to be leukemia.  And that is not the case.  This does NOT happen very often, but it happens.  They are baffled because Lucy has the best features for NOT having a relapse, plus she didn't present with any WBC in her spinal fluid.  Usually a relapse is characterized by both WBC (a certain volume) and blasts.  Now they can't say that she hasn't relapsed 100% because they won't know til they test again, but the chances are slim to none.  And they did test the blasts they found and they are not leukemia blasts, doesn't mean they can't turn into them, but for now they were not.  And blasts can be found anywhere in a leukemia patient, they call them recovery cells.  So....what does all of this mean?  Same thing it meant yesterday!  LOL  We won't know for sure if Lucy has relapsed unless other symptoms present over the next 4 weeks and then the next spinal will be the final tell all if nothing has happened in that time.  The chances are slim to none, so now that I have my answers, I will worry about relapse when that time comes IF it comes...for now I am taking Dr. Pui's advice and not worrying.  And of course I'm going to hug that little Lucy of mine every night as tight as I can.  Regardless of the outcome, she is growing up and going to be 4!!!  and after they turn 4, they seem to not want to cuddle as much anymore :(

• • 
    

Monday September 26th

Chili's restaurant all over the country is donating 100% of proceeds made that day to St. Jude.  Come to your local chili's in bloomington for Lunch and Lucy will be your hostess ;)  We will be going around and doing meet and greets with all the diners!  Come show your support for St. Jude.

Just a blip...just a blip.....

So I guess we didn't get the best news we could have...:(  They found 4 blasts in Lucy's spinal fluid.  Dr. Pui has reassured us that its nothing to worry about and that its probably because she has had an ongoing cold, BUT to be safe, we head back to memphis in 4 weeks.  I guess I spoke too soon when I said we were close to being done with spinal taps.  I've been stressed and I cried, then I looked up stuff on the internet, then I posted to other groups to see if anybody has had anything similar, and of course none of my friends have.  Awesome.  So I took a kolonopin.....its not quite kicked in yet.  The wicked word relapse is hovering in my brain and I need to realize that me worrying about it isn't going to make it go away or make it true.  So for now, we trust Dr. Pui, and in 4 weeks we will know for sure what is going on.  Just when we seemed to get comfortable and go back to normal.....UGH  Have I mentioned how much I hate cancer?

Another Memphis trip is done and over ;)

As I type, Zach and Lucy are on their way home from Memphis.  Poor zach has to deal with Lucy at the airport and on the plane while she is on the dex demon steroid.  He said he did great in procedure yesterday.  She also had to visit the dentist, and she told me herself on the phone last night that she did "fantastic and awesome" with that.  I miss my munchkin.  It was a great break, I'm not going to lie. I got to spend some time with Jack. I got to go to a cub scout meeting with him, we made caramel apples, we did homework (quite a bit of homework), and we got to talk and hang out.  It was just what we needed.  Next trip to Memphis in in November, and I get to take the little Lubelle.  Only I am not flying.  We are driving.  Its too much into cold and flu season for us to be on a plane and in an airport with that many people.  She only has 3 more spinal taps left, I believe!  wow!  that will be another milestone for us.  I have to go back and count them, but I think she will have done 20 all together by time we are all done with this.  We are all done with week 25, so we only have 94 left to go.  woo hoo!!  And just so you all know, July 2013 is her last chemo and we plan on throwing the biggest party ever!! and you are ALL invited to help celebrate that one.  If I had my choice, I'd make it a mini woodstock with lots of good music (since she is a music girl, after all), of course no nudity ;)  She is only going to be 5 by then ;)
So I'm off to get as much work done as I can until their flight comes in.....

Lucy is in Memphis....getting ready to go under for procedure

She hates procedure because 99% of the time, she is sick afterwards, no matter what cocktail they use.  But at least she is styling and going in with confidence with her cape, boots, and John Lennon glasses.

Join us and Walk with us for St. Jude!

 Laps for Lucy

The "Beatles"

Last night we were the guests of the BCPA and the American English Show.  They are one of the best Beatle's tribute bands around.  We saw them at the Castle a few months back, and were thrilled to be able to see and meet them again.  Lucy said "I won't be shy this time when we meet them".  She was a little better, but still shy.  She brought her new  Beatle's magazine that she carries with her EVERYWHERE, and was thrilled when "Paul" Wanted to look through it with her. This was an awesome concert because we brought our lawn chairs and got to sit outside under the stars and listen to them play and dance when and where ever we wanted.  The kids ran all over the place and had a blast. By the last set "Abby Road", they were cooked. Lucy said she wasn't leaving until they played "lucy in the sky with diamonds".  They never did play it, so we promised we would play it on the way home in the van.  Which we did ;)  and all 4 of us sang super loud.  It was a great night.  And well deserved for both of my kids.  It's nice to be "normal" every now and then.  I really want to thank BCPA because I enjoyed every minute of holding my baby in my arms towards the end and singing her favorite songs with her.  Its a memory I will cherish forever, and hope it sticks in my mind til I'm old and gray and I can tell her kids all about it.
I think Lucy's love for music came early.  She always kicked my belly super hard when music played, but her very first concert was Bob Dylan.  I was around 8 months pregnant when we went to see him.  And the entire time, she kicked.  So you see, her old soul and love for music came long before the cancer, and will always remain with her when the cancer is gone.  It is her coping method, and I hope she always appreciates the joy that music fills your heart and soul with.

Look Who's Dancing again ;)

Returning to "ab" Normal

I realized in the past few posts, I focused a lot on what I was thinking, feeling, doing, etc...and thought those of you who follow Lucy and are not on FB might like to hear what and how she's been doing in the past few weeks.  Well, I'm happy to say that our life is returning a little to normal as possible.  Jack started first grade, and he LOVES it.  Although we are having a few discipline issues with him at home.  He never has done well with change.  Which is so funny because usually children adapt to change a lot better than adults, but Jack seems to be the exception to the rule.  He is also have some temper issues and anger issues. I think its part DNA, and part related to what has been going on the past 9-10 months.  He's had to deal with a lot of change.  I have him seeing a counselor, so hopefully that will help him deal with his anger and temper in a different way than lashing out at us.
We have started a construction job to the house.  Since Lucy is going to be home bound for the next 2 years, along with one of us parents who will be working from home, we decided we needed more living space in our tiny 1000 sq ft. home.  We are turning our garage into a play room/living room/home school room for the kids.  We also added a bathroom and had to re-do our laundry room since our water system took up most of the space in there.  We could hardly reach the washer and it was a real pain, so we are moving things around and making it a little bit bigger to accommodate.  We also are trying to winterize our home.  We have NO insulation in our attic over bedrooms.  No wonder our heating/cooling bills are always so expensive for a small house.  All the air is going out the roof!  Zach has also had to do a lot of electrical work.  We discovered a lot of fire hazards when we were trying to do some maintenance and add a ceiling fan and few new lights.  The electrical in this house is just plain awful.  We found live hot wires just sitting in insulation, some wires were wrapped with duct tape and newspaper, and then there were junction boxes filled with live wires that connected to no outlets or light switches.  Good thing we found these fire hazards!  We have been living here close to 5 years and are very lucky we didn't have a fire!!  Anyhow, the garage is coming along nicely as a new room. I hope that gives the kids space to put their toys, so we can remove them from their tiny rooms and actually have space to put dressers in there for their clothes.  Neither has one and there is no room for them right now.
I am toying with when to go back to work in the office.  I am struggling with this for several reasons.  The first is that I don't want to make a commitment and then something happens to lucy where I have to go back to working from home, and the 2nd is just leaving her.  We have been virtually inseparable for the past 7 months.  I have very rarely left her for anything.  And she is quite attached to me.  I find I am having anxiety attacks when I leave the house without her just to go shopping or something!  Let alone trying to go to the office for 9 hours a day.  So I'm trying to work on that.  And my boss and SF have been wonderful to me and Zach about that.  We feel very fortunate to work for a company that has compassion and understanding.  I know I have to make that leap soon....sigh...
Lucy is doing great.  We are all done with all the "BIG" chemos and long intense periods.  She has been through 8 weeks of induction therapy (hard hitting chemo to kill all the leukemia cells head on), 8 weeks of consolidation (making sure the leukemia cells don't come back and with a vengeance), We have done Reinduction 1, which is a mini version of what she did the first 8 weeks, and Reinduction 2, which is the same.  We are now in what they call Continuance or maintenance.  And this is where we will be for the next 2 years. It consists of chemo every night at home.  And then once a week we go to Peoria for IV methotrexate, and she will also have to start physical therapy for the nerve damage she is having with vincristine.  Every 4 weeks, we do our steroids (dex monster) and vincristine.  Then every other month we head to Memphis for spinal taps that include an injection of methotrexate, Ara C, and hydrocortizone into her spinal fluid.  We also get the spinal fluid tested to make sure we don't have a CNS relapse (Central nervous system), which is the most common relapse for these kids.  And basically we do this for the remainder of 95 weeks.  Her counts should remain "stable" still low, but not always neutropenic.  But the cold/flu season will still be hard because we have to try to isolate her as much as possible so she doesn't catch anything and land in the hospital.  Because with any fever, we still go inpatient.  That will remain that way until end of treatment and probably a little after.  So holiday season will suck.  We will be isolated in our home more than we are used to, thank goodness for the new room.
Lucy did get the clearance to go back to dance class, which she is SOOO stoked about.  She loves dance.  She is doing ballet and tap, and she couldn't be more thrilled because she has always wanted the "clicky" shoes.  Her first class is today.  So at least she will get a little socialization with that and out of the house.  She loves clinic days because she gets out of the house and gets to play with other kids like her.
so...that is where we are at....we have come a long way, and still have a long way to go, but are confident this should be easier for us and return to "ab" normal as much as possible ;)

It's hard fitting in random acts of kindness!!

Ok, I must confess...I skipped out a couple of days on my random acts.  I just simply could not find the time.  And I know that sounds like lousy excuse, but think about it....its probably why more of us don't do random acts of kindness...we don't have time because we are consumed all day long with what WE are doing. And its hard to think of "nice" things to do. I know that may sound odd to people, but I challenge you to think of 30 different things.  I think I over think things, and I really wanted to do things that reached the most amount of people and had the biggest impact.  I think I should re-think that approach as, sometimes just reaching one person is all that is needed.  Anyhow, After I got everything that needed to be done for me, my family, Lucy, work, etc..I was spent...and quite frankly, I didn't even get everything done that needed to be done.  Lately, its seems as if I can go go go go all day long and look around and its seems as if nothing got done.  And Lucy and I are spending so much time together that I think we are starting to butt heads and that can be stressful.  I love her with all my heart, but we are almost clones..so its like fighting with myself all day! LOL  And she has become quite dependent and attached to me more so than ever.  I love the time I get with her right now, but by time I'm done taking care of her..I'm exhausted!  And I keep adding to my to do list, but never removing items..that can be quite frustrating and daunting at the same time.  It's very intimidating and overwhelming.  When I do get that down time to myself (when the kids are in bed), I feel guilty for just sitting there and relaxing because so much needs to be done in this house. I feel like all I do all day is cook and clean up after each meal.  Since we can't have left overs, every meal has to be fresh.  And we are tired of frozen pizza's etc, plus now I have a sensitivity to gluten, so its hard to find easy foods that are gluten free...so I'm cooking a lot more.  and I do love cooking, but HATE cleaning up :)  lol  don't we all?
Anyhow, back to my original thought...I do tend to go off subject easily.  I guess that's because that is how I've been living my life lately.  I have 3-4 projects or items going on at the same time. I never get to sit down and finish a thought, let alone a project.  So since I didn't get to do my Random act of kindness everyday, I've been doubling up even do 3-4 things in one day to make up for it.  I WILL do 30 things or reach 30 different people by the end of the month.  I have dropped chocolates off at the community cancer center for the staff and volunteers, I have bought a scentsy bear to help RMH (all proceeds go to them), I then took that bear and had it shipped straight to RMH in Memphis and told the manager to give the bear to the next person that walks in the door.  We bought a DVD player for our local affiliate.  I handed out itunes gift cards to people with a note attached with Lucy's picture.  I sent some letters to people who I felt really needed a "cheer" up.  And I still have 16 days to do some more!!  I have big ideas on how to reach more people with one act, now just to find time!
Plus I have my "BIG IDEA" that I mentioned a few posts ago that I need to get started on.  I have decided I'm going to go ahead and write a book. I did tons of research on books out there about childhood leukemia and there aren't very many that "tell it like it is".  There are facts, books that therapists wrote, books that families have written about their child's journey (and they are all about those kids who lost their journey).  None from parents that really tell it like it is. And I have several ideas for how to write it, so I need to sit down and start toying with it.  I already have a alot of good material, just need to organize my thoughts and figure out HOW I want to deliver it.  I'm pretty excited, and I'm toying with the idea of writing a chapter at a time and posting it that way.  Like every week, a new chapter comes out..they used to do that in papers a LONG time ago.
WHEW!  Ok so that is my first half of my blog...
2nd half...
I had some pretty interesting revelations lately that I would like to share.  I started seeing a new therapist.  Yes, I've been through 4!  LOL I can't seem to find the one that "connects" with me.  I'm a therapist jumper.  hehehe  Anyhow, it was the typical first meeting.  Where you get to know each other etc etc. Then he asks what I would like to work on.  Hmmm...well, I don't know specifically what I want to work on.  I have lots of things I probably NEED to work on, but if I had my choice, I guess I don't know what my goals would be.  Anyhow, I was telling him my story.  All about Lucy and some other issues.  And he said something to me that nobody has said before and something that I have avoided and REFUSED to say out loud...and that is when it clicked, he might be the right guy for me, he is challenging my thought process.  He said "Death happens to you, and you, and you, and you...but death doesn't happen to me".  And at first I was appalled.  I was like "How dare you even say that word or insinuate that Lucy is going to die".  Then I teared up and said "you're right".  People tend to disassociate themselves from people that could very well die sooner rather than later.  Especially a child.  Out of sight out of mind.  People don't want to hear the truth or the facts about a child going through cancer that is considered a terminal illness for the first 3 years.  Terminal...never did I say that or want to say that about Lucy.  I felt like I would "jinx" it in a way and bring death into our house.  And the revelation came to me...death has been living at our house for the past 9 months.  It's been lurking around the corners and sitting the shadows.  Its in all our minds, but we try to force him all the way in the back and try not to let him out for the fear of it.  But you know, I am giving death way too much power by doing that.  Even the doctors at St. Jude said during the induction period, they bring the child as close to death as possible.  Its a balancing act.  In order to kill the leukemia, you must not let the body have a lot of "life".  Lucy has been on the brink for a long time, and is now coming slowly out of that.  But...she still sits there..close. they don't want her to be "healthy".  Leukemia cells LOVE healthy kids.  So here it is..its now out in the open.  I am scared to death (no pun intended) of my child dying.  And I have tried to skirt issue by saying "well, anybody can die any day. And that we could get hit by a bus or be in a car accident, etc etc..."  The truth is, while those things are true, they are a way of being copping out and not dealing with the fact that Lucy has a disease that can kill her.  And that I need to do a better job of acknowledging that fear, and understanding that it is very real, but that is all it is...a fear.  She happens to be in remission, she is doing very well, and things are going to start becoming "normal" again.  Period.  Now to say that I have let that little thought entertain my mind, doesn't mean that I have fully embraced it yet...I'll work on that in therapy.  But its a pretty big step.  I also joined a group called A.L.L moms.  And I was having a hard time with that. There are a lot of kids who aren't from St. Jude on that site and there are alot of relapses.  I was driving myself nuts with that notion, and fear was overcoming me once again.  I talked to another St. Jude mom and she said "well then leave the group, woman!"  How simple yet how enlightening.  here I'm punishing myself by comparing my child with children who aren't on the same protocol, who aren't the exact same diagnosis or genealogical make up as Lucy's cancer. Here again, I was giving fear too much power. I talked to Lucy's doctor in clinic about it yesterday.  She was very reassuring.  She said that lucy has the BEST genotype and phenotype of leukemia.  She had low WBC for diagnosis, she reached remission early, and had very few blasts in her blood when she was diagnosed.  She said that her cure rate was 95-99% the first time around, and IF (which is a big if) she relapsed, the chances of her achieving total complete remission is still high.  See I took my fear and acknowledged it and shared it with the people that could give me the right answers.  I felt like I took control of that situation.  And now I feel better about it all together.
See, now I also feel better getting all these things out of my head and on paper!  I needed to journal for the past couple of weeks, but just couldn't find time...here we come back to the issue of time.  I guess I need to find time for just me, even if its just being able to blog.

Yesterday's Random Act

Have you ever watched the episode of "Friends" where Phoebe is trying to do a selfless good deed?  She is challenged in trying to find something nice she can do for someone else without benefiting from it?  Well, I know exactly how she feels!  Yesterday we drove out to visit "big" grandma while Zach got a haircut, and on the way back into town decided to eat out since it was so late.  We drove to a couple of places the kids asked for and there were lines out the door waiting, we thought forget this.  So we finally landed on pizza, and low and behold, we drove to Monicals and it was PERFECT!  No waiting at all (if you have small children you understand the importance of this).  So anyhow, our waitress was asking Lucy all about her boots.  She has these Princess boots that she HAD to have and they light up.  They cowboy/winter boots and she insists on wearing them all the time with whatever outfit she has on.  Yesterday her outfit just happened to be an adult sized Beatles shirt that she wore as a dress ;)  Anyhow, the waitress who looked to be about to deliver (she was pregnant) was running around waiting on pretty much every table, and when she got to ours she stopped to ask Lucy all about her boots. She said she had another child who is having a birthday and that she would LOVE those.  So we ate our dinner, and as we were leaving, I decided that would be the PERFECT random act of kindness.  So I left a tip that was enough to cover the majority of the cost of the boots with a note that said This was in honor of my daughter Lucy who has cancer, and all I ask in return is to spread awareness about childhood cancer.  

I get home and wrote down my random act of kindness on Team Lucy FB page, and I have to say, I felt extremely GUILTY!! Not for doing the act, but for telling all about it.  I didn't want praise or to "show boat" what I did, but I wanted Lucy's followers to know that I am following the challenge I set forth.  And then I felt really good about what I had done.  I was proud of myself for giving our entertainment money for another person who really looked like they could use it more than us.  Now we have a very strict budget, obviously due to our situation, so I do the Dave Ramsey system where we have envelopes filled with cash every paycheck allotted for different things..one of them being entertainment.  Anyhow, I felt like that was money well spent and I would prefer to rent a redbox for a $1 than go see a movie at a theatre for that cause.  So this random act of kindness that was suppose to be a selfless act actually made my day!!  So I think Phoebe was right, there is NOT one act of kindness that you can do that isn't self fulling or rewarding.  Matter of fact, it made me feel so good, I started to make a list of all the things I wanted to do for the rest of the month.  Now, not all of it will involved money, it can't, we don't have that much to spread around, I wish we did.  But I am so excited!!  I would prefer the majority of the rest of my acts of kindness to remain anonymous, I'll see how that works.  and I want to be creative (see here I am over thinking things again as always) and really make a difference, even just a small difference.  Then that got me thinking...that is exactly what I am dying to do.  

Remember the buttons that Steve Mazan passes out at his shows that I mentioned.  They basically are your dreams and they say "I'm dying to"....and you fill in the blank.  and mine was "I'm dying to figure out what I'm dying to do".  Well I figured out what I am dying to do ;)  And the overall picture is a pretty big one.  I dying to make a difference one day and one act at a time.  and that can be pretty overwhelming, but as I chop it into little pieces I find it to be exciting and manageable.  I have never been a conformed individual.  I have always fought authority and status quo.  That would be considered to be a bad thing, or a unique thing.  I have consistently received lectures and constructive criticism on how if I could just change this "one"thing about myself it could help further my career. I have also been coached on how I want to "brand" myself.  How do I want others to see me?  And it occurred to me during all of this going on with Lucy, I don't care how others see me.  I want to live my life just as I am. I don't want to conform, and the reason I am struggling at succeeding in this world is because it is not a natural talent of mine.  And what is even more ironic, is that signs have been all around me about this lately, and it just took me time to focus and recognize them to realize that my dream is and has been staring me in the face my whole life.  I have fought it. And I have decided I don't want to fight it anymore.  So the "signs" that have come to me lately have been movies such as documentaries regarding chasing your dream (Dying to Do Letterman), one about suburbia and how we live in cubes and have been disconnected from reality and people by forming an infrastructure that allows for solidarity.  I also watched one regarding the food we eat in "King Corn" and how commercial entities have controlled our entire food supply along with politics, of course.  Can't forget politics.  I don't want to be a part of that.  I know I'm just one person, but that would be one less person buying into this "american dream" that has gotten us so out of touch with our fellow human beings.  Plus politics and commercial entities run everything in our lives.  Including the treatment my daughter receives for a life threatening disease.  And money, we cannot forget money. Money has haunted me for a very long time.  I grew up with not enough of it, then when I got a little bit of it, I spent it before I could get it, then as I tried to clean up that mess (thanks to Dave Ramsey), I started to realize what was important, but I wasn't quite there yet.  It took my daughter getting cancer to realize that it doesn't really matter.  And as long as we have enough to sustain our livability, I am content.  We don't need the fancy things or name brand stuff.  I am happy with quality.  I do not want to work 60 hours a week to earn that money, its not worth it.  I would prefer to work less hours, make less money, be less stressed out, and focus on the things that matter. I don't laugh as much when I work that hard and can't even really enjoy the money I earn because of this.  And the irony in that....I worked my entire 20's to get where I am in my career and I'm not happy with it.  I thought I would be, and at first I was, but as time went on, I realized I may have made a mistake.  I want to make a difference, period.  And I have come to terms that sometimes that means making less money.  It took me a long time to come to that realization, better yet to accept it.  Now, I need to put that plan into action.  Of course, I'm not reckless. I'm not going to quit my job and become a part of a commune ;)  I understand that my family's security is number one in priority, I just need to gradually help make that security in a different way that makes me feel more fulfilled.  I want to be part of a solution.  I know, I know...what big dreams I have!  LOL  I've always been seen as having big dreams that may seem unrealistic, but now I'm wondering who are they unrealistic to?  If its want I want, then I should do my best to fulfill them, right?  So....this month, I work on crafting that.  I start small.  I try to make as many people aware of childhood cancer while performing kind acts.  Next month, I move on to the next step.  And I have a great idea!  (not to be revealed until next month so I don't overwhelm myself and give up).  And slowly within time, and after we have Lucy all better and the family secure, Zach and I decide to make our dreams come true.  We already know what that is.....just have to have patience, perseverance, and a little bit of good karma on our side.  Whew!  I did NOT expect that to be this long...sorry about that. I just had to write down all of the things in my BIG dreamer mind down on paper.  Now it makes it a commitment.  And a commitment will help turn it into a reality.  Who would have thought one random act of kindness which was suppose to benefit another, actually benefited me more than I could have guessed....Phoebe's theory from friends was definitely proven wrong!

Day 2-- More tools to help spread awareness ;)

Day 1--Random Acts of Kindness

September is National Childhood Cancer Awareness Month.  I didn't know that.  Did you?  I definitely knew that October was the breast cancer month, but I had no clue about this one.  It's not as main stream as other cancers yet there are 46 children diagnosed every day.  But the funding for childhood cancer is way lower than any other funding out there.  Basically, they use adult cancer chemo's and adjust doses for children.  Did you know that?  Yea me either.  Selfishly, I had no reason to know, and I didn't want to read about anybody who was a part of this world either.  I couldn't handle it.  I couldn't hear how other parents and children were dealing with this disease.  Yep, that was me approx 9 months ago.  Now that is ALL I do! I shove awareness in people's face.  I blog about it, I FB it, I email it, and I talk about it. So this month, I would like to challenge all of our followers to also help people become more aware of childhood cancer.  No, you don't have to talk about the horrible statistics about how 7 children a day die from one form or another of cancer. But I believe the first step to making a difference is making people aware.  I don't think people are aware of childhood cancer because quite frankly, its a scary world. So back to my challenge.  I challenge each of you to do a random act of kindness every day.  And you can tell the person to whom its directed, or write a note, or whatever, that you did that in honor of a child fighting cancer since the entire month is dedicated to childhood cancer awareness.  And you can use a name of a child, or not. But I bet it's harder than you think to do a random act of kindness EACH and EVERY day for 30 days!  I would love for those of you who accept the challenge to keep a list and email it to me at the end of the month.
Today my random act of kindness isn't so random, but it will have to do since I haven't left the house all day.  I am having dinner with some friends tonight, so daddy is on dinner duty all alone.  Instead of having him fend for himself and the kids, I have a crockpot dinner cooking as I type ;)  Hopefully I'll get more creative tomorrow!
In the spirit of awareness here is your childhood cancer fact for the day:  Research on the emotional impact of childhood cancer finds that parents and siblings report even greater longterm emotional impacts than the diagnosed child