If we all lived the world according to Dr. Seuss

I just realized I didn't post the results of Lucy's spinal. I guess I was too excited and forgot to blog.  Her results came back clear!  woo hoo!  We have to go back in 4 weeks and make sure we get another clear result.  Dr. Pui said the chemo they injected last time could have killed any cells, so he wants two clear ones in a row, and this time they didn't do intrathecal chemo so the next one will be the real test.  We had a nice time in Memphis even though the drive straight through wasn't wonderful.  We made sure we took Lucy out to Huey's to eat (our favorite burger joint), and then she got to see her boyfriend with cancer (as she calls him), Bo and got to go eat dinner with him and Lucy got to play with him.  She sure is bossy!  LOL She made him hold her hand and then was on him like glue.  Poor kid doesn't have a chance.
So our playroom is almost complete.  We have trim work to do, some decorating and furnishing, and a few odds and ins.  We have moved the kids in there for the time being.  My "theme" for the room has been bright colors, and all about the kids.  I have their art work up on the walls, I have Dr. Seuss quotes all over as well as some of the characters.  I painted the walls all different colors.  2 walls are blue, 1 is red, and 1 is green.  Zach thought I was crazy!  as does everybody else who saw it, but now that I have the pictures up and Seuss quotes I am getting a lot of compliments and people saying "wow, that turned out really nice".  See I had a vision....LOL
The kids were asking me what the Dr. Seuss quotes said as I was hanging them.  I made Jack read them.  The first one I chose was "A person's a Person no matter how small".  He got done reading it, and said "hey that is really true!"  LOL  he liked it.  Lucy even chimed in with "I'm a person and I'm small".
The second one is "Be who you are, say what you feel because those who mind don't matter and those who matter don't mind".  Jack asked what exactly that meant.  I told him it meant to be himself and don't say or do things just because other people do them.  I told him we would love him no matter how he felt and that it was good for him to tell people what was on his mind.  I hope that one doesn't back fire on me!  ha!  He loves to read this one now over and over.  The last one is "Today you are You, that is truer than true. There is no one alive who is Youer than You.” 


 I couldn't find my favorite already as an applique  "I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!” I am still looking for that.  
So for obvious reasons, I chose Dr. Seuss because he represents the world through the eyes of a child.  And I love rhymes ;)  But for less obvious reasons, I also chose this for their room, it was more for me.  These quotes are some of the best that I have seen and I feel that everybody should live by them.  They are so simple, yet so profound.  Matter of fact, one of them came up in my therapy session...how ironic, right?  We were talking about expectations and relating with others.  And my therapist said "well, now why would you expect so and so to think like that?  just because you do?  Nobody thinks like you do and you should never assume that they do".  Wow!  So simple...yet we forget this a lot!  Not only do all of our brains work differently, they are shaped differently by our experiences.  And we sometimes forget that.  It reminded me that nobody is like me and the simple quote "there is no one alive that is Youer than You".  And it also taught me to appreciate what others say and try to see their point of view even if I don't agree.  Let them say what matters to them in their own way instead of how I want them to say it.  I'm not good at that.  I like to be in control of situations.  My therapist also reminded me that sometimes I may be expecting things from people that they just aren't capable of giving.  And its not a bad thing, it just is what it is.  Maybe that isn't that person's strength and instead of dwelling on that what the problem is or what they CAN'T do, why not focus on what they can do and find ways to make up for it in their strengths.  Again...nobody is You.
Just imagine if we all lived the world according to Dr. Seuss.  We would have more respect, understanding, less judging, more confidence in ourselves and trust in others, and be equipped with a mindset that can help us beat or overcome any obstacle....cancer included.  I encourage you to go buy a Dr. Seuss book or read one if you haven't in a long time. And don't look at the story as a child, but read it as an adult.  I'm inclined to think you may have a new appreciation for the world.  And remember "The more things you read, the more things you will know.  The more that you learn, the more places you'll go".

Dejavu

Odd enough, it's that familiar and comforting feeling as we entered the gates of st. Jude. If you have never visited this place, it's surrounded by a wall in which you have to gain access through one of two entry points. It's like what I would imagine would be the equivalent of heaven on earth. For a family with a child who has cancer, it definitely is a place of refuge. While we didn't choose to be here, there is no other place I'd rather be now.
I got up at rmh, had some coffee, chatted with the resident cat. Yes there is an outdoor cat that lives here. And now am typing an update on Lucy. Not on caringbrige this time, so that's different. While it's familiar, I do NOT want to stay for more than our 2 days! Last night, we let Lucy party it up. We searched for this Ronald doll they hide and can win prizes if he's found. Daddy helped and Lucy found it!she was so excited.then we let her run the halls. She's just as comfortable here as we are. She knows the place inside and out. And quite frankly act likes she owns it. Then we went downtown for dinner at Huey's, our fav burger place. Lucy likes it because you can draw on the walls and shoot toothpicks to the ceiling!
So this is our big spinal day. We need clear results and no whammies!!! I'll update after we know. Think positive thoughts for us today!!!

Membership card required

I belong to a club. It's a very exclusive club.
Nobody knows how to gain membership. But it's a tough initiation.
Some say it's exclusive,but I think more and more are starting to become members, so I would argue that point.
I have had to be away from home for long periods of time to fulfill my duties as a member.
I have had to sacrifice time with friends and family.
Initiation made me cry. It made me lose sleep. It even made me scared. I wanted to stop my membership many times, but there are strict rules you must follow. Opting out is not an option.
This club requires a Lot of time and dedication, more than any other club I have belonged to.
After I got through initiation, I thought things would become easier and more manageable, I was wrong.
I have to say, I've met some amazing members in this club. New friends who have become like family.
Get togethers are more frequent and the cost is steep.
The motto was hard to learn, but so worth it. This club has taught me about life and how precious time is. It had taught me to laugh when most would cry. It has taught me to love when most would hate. It's has taught me about patience, kindness, and learning to let go of things that don't really matter. Live, love, and laugh mean something entirely different. I've learned to weather storms and dance in the rain.
I belong to a club.
It's an exclusive club.
No membership card is required.
I am a cancer mom.

Arrival to Peoria

Lucy at the hospital in Peoria

On our Way to Peoria in the Ambulance

I had talked about that "fateful day" a few blogs ago.  The day that started out as any other day, but in the end would end up turning our world upside down.  I thought I would continue talking about that day as it unfolded.

Lucy and I rode in the ambulance from Bloomington to Peoria to the Children's hospital which is also a St. Jude Affiliate (we didn't realize this at the time or if we did, we weren't focusing on that).  Lucy fell asleep on the way there, and I did all my phone calls to family to let them know what was going on.  The ambulance personnel were so kind and so good to Lucy.  They were from El Paso.  It really seemed like one of the longest rides ever.  Zach wasn't with me, he was home packing clothes and driving separate.  He told me later that he drank at least a 12 pack of soda on the way to the hospital and was driving 100 miles an hour.
We pulled into the hospital, and the ambulance driver asked one of the nurses at the station if she could grab a special gift for Lucy. It was the day after xmas, so they had a lot of gifts for the kids.  Then the nurse took us up to our room.  It was a HUGE room. And Lucy had a crib bed, not a regular bed.  I was a little taken back, but then I thought, well that's better for her to sleep in and not fall out.  It was a sad room.  It had all kinds of machines and was designed for a sick child.  It was heartbreaking, even more so because it was MY child who was sick and laying in that bed.  I don't remember a lot from that point until Zach got there.  I know I was anxious and the nurses were trying to keep Lucy busy with the TV.  She was enthralled with it all and not a care in the world.  I am certain she could sense my fear and sadness, she was asking why I was crying.  I told her I was sad because she was sick.  She told me not to cry.  So I tried not to.
I remember them putting an IV in her hand and I honestly cannot remember if she cried or not. We had the IV from the other hospital, but for some reason, they had to put their own in.  Then the whirlwind storm started.  The nurses came in and didn't tell us that much at that time but I do remember when they came in and told us they were going to give her blood products.  They said she needed platelets and blood.  We were so naive about that whole process.  I asked "well, can we just donate and give her our blood? "  We were concerned because of the horror stories you hear about what diseases people can contract from getting blood products.  She said "oh, honey, that's not possible.  First of all, it would take a while because we would have to wash your blood, and type it, and second of all, she needs a lot of products, and if you give once, you won't be able to give for a while in case we really need it.  We ask that parents don't donate blood at all during the duration of why their child is ill".  I was a bit confused, but what could I do, she needed them bad, I didn't know how bad at the time, a number meant nothing to me because I was oblivious to what was "normal".  Her platelets were 2000, a normal range is 150-300 THOUSAND.  Had she fallen and broken any more blood vessels, she could have bled to death.  We had no clue.  It made me sick to my stomach to think about it.  For months later I still couldn't think about it without almost throwing up.
I'm not sure quite of the events after that and in what order they happened.  I do know my family had came up and we were waiting to hear from the doctor. I remember there was a shift change with the nurses. And the nurse had come by to say goodbye and that she was off and would be back Wednesday. (it was Sunday).  Zach said "um we WONT still be here by Wednesday, are you crazy".  It was incomprehensible to us that we would be there for more than a night.  Again, we had no clue what was going on.  Then our nurse came in and Zach asked her something about either the transfusion or something and she said "well, your daughter has cancer you know".  We looked at each other in shock and he said "no, actually I didn't know that at all, nobody has been in here to tell us".  So that is how we officially found out.  What a horrible way. So now we were hunting down a doctor.  We demanded one immediately.
Dr. Fernandez came in and told us that Lucy did in fact have leukemia and that they were running some blood tests to type it (again, we had no clue what this meant).  She said they would know more and have a plan of action after they got the typing back.
I cried.
and cried.....and cried...
I don't remember much of what happened after that up to when Dr. Fernandez came in to tell us the rest of the news and quite frankly, I don't even remember the order of that.  She told us that Lucy had Pre-B ALL, and that was the good kind to have (I'm thinking..whatever...good and cancer in the same sentence).  She said T-cell was much harder to treat so that this was good news considering our situation.  And she was so calm.  Everybody was so calm.  Then she told us that She had called doctor Howard at St. Jude and we had been accepted as a patient.  We were still so confused and naive about what was about to happen.  And we didn't understand what it meant when she said we were accepted as a patient.
My family was still there and they helped to keep Lucy entertained why we were going through all of this in our minds.  I remember Dr. Fernandez taking us into a little room and saying "this is your new normal now"  I had no idea what that meant or how important those words were.  She explained we would be treated in Memphis and that they were waiting on Lucy's counts (I had NO clue what that meant) to see if we could drive her to Memphis or if she needed to be taken by ambulance.  Again, we are hearing this, but not processing it.  We had NO idea how serious the situation was.  I was at a hospital and expected her to be "fixed" and then go home.  Then a social worker came in and talked to us about how to get to St. Jude, the ins/outs, housing, etc.  Housing?? Why would we need housing?? At this point, we also had no clue that St. Jude takes care of the medical co pays and we wouldn't have to pay out of pocket for that.  So in our minds, we are also discussing the fact that we had zero money in our accounts (it was the day after xmas), and we were trying to figure out how we would pay our bills and when do we file bankruptcy. And I'm not kidding.  We were certain we would have to and just wanted to make sure we still had our home.  We also let our work know what was going on, at least what we knew.  I think they told us at that point we would be in Memphis for a couple of months, but I don't think we heard it...at least I didn't hear it.
After that meeting, Zach and I went out in our truck, and we cried.  We sat there with each other and kept asking why.  Why us?  why her?  I was so angry.  So very angry. I wanted to hit something.  We came back up stairs and told our family what was going on.  I don't even think we told Lucy at that point, I'm not sure..I don't remember what we told her.  Here she was the center of attention and the reason we were there, and yet, I don't remember much of her that actual day, all I remember is when I was on the phone talking to somebody and crying she would ask "why are you making that voice?  are you crying?  stop crying".  From that point on, there was NO crying in front of her...EVER.  I also know she was getting all sorts of presents and playing in the bed and eating whatever she wanted, but that's it.  I find it weird.  That was just a few hours that all of this happened, but when I think back to it, it really seems like it lasted for days.
Our family left and said they would be back in the morning. And then a long long long night was ahead of me. I had the hardest time sleeping because here Lucy was attached to all these wires and IV's and I was terrified she was going to pull one of them out.  So I was awake pretty much the entire night checking on her.  She got tangled up a few times.  I do remember sleeping on the floor, and the nurse came in and gave me a sleeping chair.  then I remember one of my friends from highschool coming in to check on us.  That was nice.  I hadn't seen her in years and it was good to see a familiar face.
The next morning, I was anxious.  Dr. Fernandez said that we would be able to drive Lucy to Memphis as long as we could get there in 8 hours.  We said "well, discharge us and let's go".  We called our immediate family and told them to meet us at our house.  Now, Jack had no clue what was going on at this point.  He had not been up to see Lucy and we hadn't even talked to him on the phone.  I do remember my mom coming up to the hospital that morning with my brother and his wife and Lucy saying "Grandma, WHAT are you doing here?".  That just pointed out to me how much she was so unaware.  So we started to pack up our stuff and head home to pack for Memphis.  Zach said "I want all the family to meet us there and I want to have one last normal dinner together before we start this.  Little did we know, what that would really mean....

This video is right before we left to go home and pack up.  My nephew had given Lucy his MP3 player filled with Beatles songs to take with us on the trip.  

Pumpkin Farm 2011

 https://picasaweb.google.com/111718706691384103118/20111009?authuser=0&feat=directlink

Facebook Psychology-- the meaning of the "un-friending" situation

I remember when I first signed up for FaceBook.  I had been on myspace and was not really liking how much garbage was all over.  So when I saw FB I loved it! It wasn't cluttered with ads and games and nonsense polls.  It was a way, in all honesty, a place for me to have a social outlet since I had two small children at home and I worked full time.  There wasn't much time for a social situation, and I am a VERY social being and craved and needed people in my life.  I would sit up on weekends with a drink or two and chat with friends and laugh my butt off instead of going out to the bars.  I was able to connect with people I haven't seen in years or people who lived far far away.  I was able to link up with family who lived out of state.  This forum took over the need to write letters to friends or in some cases even call them. And for me, that was HUGE, I didn't have "time" and this allowed me that extra time.  

Now, I also remember the first time I got a friend request from somebody I didn't know all that well, and I accepted it because I felt bad if I didn't!  LOL  I didn't want to hurt anybody's feelings by not accepting.  There has to be some very powerful psychology surrounding this topic.  And I also remember the first time I sent a friend request that wasn't accepted!  I felt rejected, and like "how dare they".  

FB was my social circle and support and then Lucy got sick.  boy  was it even more powerful at that time than any other.  I was able to update people in a timely fashion with a sentence or two, I was able to reach out for support that I so desperately craved, and more importantly, I was able to have as many people as possible keep Lucy in their thoughts and prayers, which I believe has a strong healing power and good aura.  Well, my friend list jumped during this time.  I now have over 570 FB friends.  And I don't think I know who a lot of them really are.  Here, I couldn't NOT accept friend requests because I didn't want to hurt anybody's feelings.  Then something changed.  One of our friends created a "Team Lucy" page for Lucy.  So I no longer had to worry about accepting requests from people I didn't know because if they were truly wanting to be a friend to check on Lucy, they now could....On her page.  Thus, I started to not accept requests.  I had to keep a clear definition between who my true friends and family were and the information I posted to be directed towards them only, and for Lucy's page to stand on its own and serve its purpose.  

So where am I going with all of this??? and why am I posting it on the blog.  Well, today is clean up day, and I'm nervous!!  I have decided to go through my friend list and only keep the ones who I truly interact with and know personally.  So I have decided to start "un-friending" people.  YIKES!  Its part of therapy.  I often say yes to too many things and don't want to let people down or hurt their feelings, and this is a small step of realizing that its ok to just say no every now and then.  

So how do I choose who to keep?  Is there a criteria I should follow?  Where is my list of important features to help me decide?  See...there is a lot of psychology surrounding this.  And I'm reminded of the line in "The social network" where the girl asks her boyfriend "Why does your relationship status say single on FaceBook?"  And she was so mad.  Its funny.  Since we are all connected now 24/7, FB has become a very important part of some people's lives, not all, but many.  And I'm sure Mark Zuckerberg (sp?) knew this as he was developing his network.  And now companies are paying attention and starting to screen your character on the internet and FB before hiring (I don't agree with this and that's another long subject).  

As a first step to my un-friending process, I decided to start with Team Lucy's page.  I can see how many of my 580 friends "like" her page and follow her story.  So I thought that was a good place to start.  If they were truly interested in what I had to say and my life, they would be interested in the health status of my child with cancer.  So that is where I am going to go first.  

In therapy, one of my "homework" assignments is to be responsible TO people not FOR them.  So why some people may think facebook is a silly thing to give this much time, effort and words to, it is a HUGE part of my personal social network. I don't get out of the house much, and having a sick child consumes a lot of my time, so I rely on FB for many many things.   So I am starting by being responsible TO people by unfriending them if they truly aren't my friend. 

Such a simple, seemingly little, and silly task....with so much thought behind it..there has to be psychology surrounding this??!!  Happy Facebooking, tweeting, blogging, and four squaring my friends!! 

Somebody has a big "jobs" to fill

It's been crazy hectic here at our house to do any blogging, but I think the stress is getting to me so I apparently need to get it out of my head since I woke up at 3:40 this morning with no hopes of going back to sleep in the near future. I decided to get up and blog all my problems and give them to you, the reader, yes, nice of me, I know ;)
Zach is still having issues with his concussion. The headaches are getting better and goin away almost completely, but the dizzy and nauseas are still here anytime he does a lot of movement. Even something as simple as picking up laundry off the floor. And he can't drive or ride in a car without puking, so I have been left to run errands and take Lucy to clinic.
Clinic- oh yea, we got low numbers this week. Ugh! Her anc dropped from 3100 to 600, which I expect it to drop post dex, but not that low. Her WBC dropped more than half too. They said it could be from upping her nightly chemo (6mp). She had high WBC for 5 weeks in a row (not abnormal high but higher than they like a cancer kid to be), so they said she could be metabolizing the 6 mp too quickly which was the reason for the dosage change. So we go back to check her counts again today. If they are falling, I'm assuming they will adjust the 6mp again. It's a game of balance, always. You don't want to give them so much that they are always neutropenic, but you also don't want their body so healthy because the cancer cells love that. When her counts are this low, you want to minimize any exposure to germs, viruses, etc because their bodies can't fight them as well. Plus a fever with counts this low is dangerous. So we avoid crowds and pretty much everything! Before this was fine because all we had was clinic anyhow, but now she has dance class, so I have made
The decision to take her and just make her wear a mask. There are only 6 other girls in the class, and the place is dead in the mornings. I'll see how pleased she is with that! Ha! I have to balance and keep her as "normal" as possible.
We have also had some stress with one of my uncles having a stroke last weekend. It's horrible, and sad. I don't really know what else to say about it even though it occupies my mind the majority of the day. He is going to get rehabilitation and I hope it works to get him to his "new" normal that is comfortable for him and satisfies how he wants to live out the rest of his life. New normals just suck.
Then for my own personal health, I have been struggling with some things that are hormone and thyroid relates for years. Even went to mayo at one point because it seemed as if I was getting no answers here. Well, things were finally on the right track, I was working with my endocrinologist and found a new holistic doctor as well. I found outbid had some food allergies, Which was a relief to hear why I was having some issues, but a pain to have to change how I eat (btw, keep Zach in your thoughts, I got a new cookbook! Lol and
That's never a good thing around here since he's my guinea pig). Anyhow, I went in for my annual check up even got my first mammogram this year, it came back good, so I was feeling pretty good, then something came back abnormal on my ovaries. So they sent off the blood test called c-125 (I think) for a cancer tumor marker test. I was like "really?? Because one person in this household isn't enough? I don't have time to have cancer" I'm sure the test is fine and it'll come back in the next couple of days, but just the idea that they think it's necessary to have testing pissed me off. Maybe they are just being overcautious because they are well aware of our situation. I'm really not too stressed or worried about it coming back bad, just floored it is even bein done.
Then steve jobs dies this week! Of cancer!!! It really is all over the place and nobody is immune and not all the money in the world can make it go away. Cuz he sure had enough money! And what a loss this world experienced. Whether you were an apple fan or not (my loyalty is quite sickening, and I think I need therapy over my iPhone! Ha!) the impact he had on how we do everything was quite phenomenal. Experts said a home PC wasn't possible, he proved them wrong. Then he created an empire of how we listen to music, news, how we communicate with such ease, and probably how the government can track us easier too! Lol but he couldn't influence or change how we treat cancer. Not even with all the money in the world. And Steve Jobs was a huge beatles fan, so we love him that much more in this house for obvious reasons. Somebody posted on FB that heaven just went hig tech. Let's hope so. Cancer surrounds us all over, and let's hope that there is an equivalent to Jobs in the medical world. Because they have some tough work laid out for them, and I hope this person or persons are up to the challenge because I for one feel like a family with one person in
Their household with cancer is too much, let alone two..or in my extended famiy's case, a dozen or more. That is definitely a big job for someone to fill.