Thursday, August 26, 2010

POW!!! and My Prince Charming

The wall also has some flowers added to it from Zane. I will have to take a picture today.

What a champ!!!

I got to watch our good friends, Stephen and Angie, duke it out which was theraputic and full of laughs! Then Stephen had to put an end to all the fun because Ang started getting a little rough!! :)
They have firmly decided that I will be staying one more night in Chez NCH. They have been pumping me with 24hr. fluids since I stepped foot in here so not I am a wee bit bloated and puffy and it hurts when I take a deep breath in. All symptoms of the fluids. So now they are giving me a drug called Lasix along with something else to reduce swelling and bloating and such.
One of the chemo drugs has today cause quite a bit of pressure in my sinuses and my head. Also it is causing me some insane hic-cups which are just on the bottom of the pond and the likable system for me. They can be so strong that they give me about whiplash!! Jeeeezuz!
My little crowned prince came to visit me yesterday after a wonderful and successful day at school! He is now keeping the three days a week but staying longer till 3pm. He even NAPPED! This napping thing may really not be the best thing because it makes little man such a night owl but I felt so darn comforted that he is so comfy at that school that he zonked out on the first day!!! Even will all that is going on!
Well, I have the silk prince crown waiting for him when he got here and a new computer preschool game we checked out on my computer. AND of course a new pez despenser! Momma chooses some good ones and he is starting a tinny collection for sure (Sara, watch out!!!). This time it was a Thomas the Train on. We keep it here and it came with exactly enough packages of candy to last one per day!

(P.S. I apologize for any crazy typing errors or times i don't really make sense. I definitly feel a large shift today in my clarity and ways of making sense of things and the things around me. My hands get shaky from the drugs too so sometimes typing is not so smooth. But, I know you'll hang in there!! Hee!)

This one is for you, Sambolito!!

I have been in lots of digital touch with my sister in law, Beth Ellen, over the past few day. She has sent her love and her ability to be cool and hack into my accounts all the way from Utah and get things functioning for me. I can now blog a little better and well, she makes me smile.

Then my Mom came here yesterday and opened up the flood gates of communication by letting me borrow her "AirCard" so now I am really good to go.

I love technology in here because man would it get horrid. I don't think that my TV has been on more than maybe two hours in two days because it is just simply obnoxious. Loud, depressing and really nothing to watch. Junk.

So, yesterday, BE told me that Sam was very into looking at the picture of me with all the machines behind me. He is very into machines and robotics.

So, yesterday, his Uncle Paul and Aunt Danielle worked on a mini tour of my room and some other robotic action on the outside of my room.

Check this stuff out, Sambo!!!

My hanging bags of chemotherapy medicine and fluids. They drip slowly through that tubing that you see.

Me, lookin' all so good and some things behind me that they have not had to use on me (whew!). Things like oxygen and air hook ups.

Let me introduce you to my "Tea Making Machine." I really splurged on this one and got the best lookin' and sweetest one around!

Same bags and tubes. Just different perspective.

The full rail that I am hooked up to. Sam, every time I have to go pee-pee I have to unplug this robot and take it will me since I am hooked up to it into my port on my chest. Nothing like a little potty company, huh! Sometimes I just want to request just a little privacy please just like I know you do!!!

Close ups.

Blood pressure checker on left. That is when like you go to the doctor and they put that cuff around you are and it makes funny noises and puffs up tight.
Also on the right is a machine that checks my oxygen levels. They have a little clip that they put on my finger for a minute or so and the robot reads out a number on the screen.
So far I have been rockin' the good results with these robotic friends!!

And here is me in my full glory! My nest so to say.

The picture that inspired all this for you Sam and thank you... it gave me a great opportunity to entertain someone!!!

Now check this crazy robot out! When Paul and I are walking through the halls, these things that really just looks like a box on wheels is really a ROBOT DELIVERY SYSTEM. It has the hallways programmed and knows if you are walking near it. We watch one totally find the elevator and communicate with it which floor it needed to go to. Then work its was onto the elevator! Crazy delivery robots!!! I keep wondering when one is going to run over my toe so I can yell out "hey you! You watch out you wild robot!!!".
Robot getting on elevator.

Paul and I are hoping to get some video of them for you before we get out of here tomorrow.

Then just an addition on one of my favorite photos of my favorite cousin friends eating breakfast at our camp ground in Utah a couple weeks back!!!

Bird Waxing

Waxing his little wooden bird that Aunt Beth Ellen gave him for Christmas (along with some lovely lavender scented wood wax. He is very focused.

chillin' (a different day...)


Olivis (Rachael's sister) took these beautuful shots of our boy.
She is about the only one he would let take pictures of him about the whole weekend.
He loves Olivia. He knows good, kind people when he sees them!

Wednesday, August 25, 2010

This is a test...

So last night my sister in law, Beth Ellen, could here the panic in my voice as I expressed all over the Facebook world all the things I came to the hospital prepared to do (as well, as get chemo of course!) but was slowly figuring out I can not do.
I could not get on the blog to do blog post. Made me REALLY mad.
I could not get on my server at work. Made me REALLY, REALLY mad.
Then I figured out I could not attempt to Skype anyone. Well... you can guess.
Oh, also, I can access my blog reader... but can NOT read a single blog out in that crazy cyber world of ours. I don't know about you but I use blogs for all sorts of things. Information, catch up on a pal, laugh and look for constant creative inspiration.
I know without a doubt that if I could have caught up on a couple of my fav blogs, I for sure would have picked up my knitting by now. So far it has sat by my side so patiently. Today will be the day. I don't care if I just do one round.
So, I am posting this blog post through an email system that Beth Ellen has set up for me. I should be able to write and post pics... so we will see... crossed-fingers...

Monday, August 23, 2010

Updates with a Monkey/Batman sort of closure

It has been a long time to wait for an update after all that but what can I say? It has been so incredibly busy and overwhelming in our lives. I don’t think things are going to slow down for quite awhile.

We have been to Moffitt Cancer Center in Tampa for a second opinion. They have determined that the best course of action is to do two infusions of chemotherapy called I.C.E. followed by a stem cell transplant. My local oncologist, Dr. Morris, agrees completely with this. I have also been very briefly in email contact with a doctor from M.D. Anderson and he too agreed that this is the typical course of action for my case.

(For more on I.C.E. check out:

To make this (hopefully just for now) short and sweet, after much thought, confusion, tears and terror, we have made the decision to have the first two chemotherapy infusions done in the local hospital (NCH Downtown). They do this as an inpatient only and I will be in the hospital for three days. I will have three weeks in between each of these treatments. Following that, they scan me. If the scan is “clean” then they send me to Moffitt to do the stem cell transplant. If they are not “clean”, then I do more chemo till they are.

The stem cell transplant will be three weeks hospital stay followed by two weeks where I will have to stay near the hospital in one of their apartments. These time frames are all estimates. What matters is where my platelet counts are and those will determine when I get out of the hospital and then when I get out of Tampa and back home.(More on stem cell transplants later... or you can google away!)

So… I start TOMORROW!!! Tomorrow at some point in the day I will be checking into NCH and I will get my first I.C.E. treatment. I will be there for three days because it takes that long for the infusion. Some of the drugs are only going in me for a few hours at a time while others are going in 24 hours.

I can’t even yet get into how I feel about all this except that I am scared out of my mind. And angry. Last time I went through this I was scared of course… but not this much. And I wasn’t angry. The intense anger is a bit new. We will have to deal with that I guess.

I am hoping that since I will be trapped in a hospital for the next three days, I will be able to blog about the experience. Then again, I have no clue how this will go or how I will feel.

To end this on a positive note, my beautiful and wonderful brother, Ben just got married this last weekend to a stunning bride, Rachael. We got to spend a beautiful week in New Hampshire and experience a weekend and ceremony filled with beauty, love, laughter and support. Hopefully more to come once I have a chance to go through some pictures. Right now they are in their new car with their bicycles attached on their way to Canada for a love inspired adventure. I love and miss them so much! (P.S. Paul and I went to Canada too for our honeymoon!!!)
On another totally random note (just to throw it in there!) Mimi took Zane and I to a Curious George Live show back in July! Zane sat glued to it (just like this picture) and YES he did eat an ENTIRE bag of cotton candy all by himself. And I let him. And I thought it was great. (Mimi thought I was crazy!!!) Thank you Mimi for a wonderful evening full of monkeys and blue-dyed poofy sugar!!!!
Two VERY big Batman fans... Zane and his Papa.

Wednesday, August 04, 2010

A little Ugh, a new toy, and a lotta Dance Party!!

Well, tomorrow is Bi-lateral Bone Marrow Aspiration Day! Yeah!

Well, to say the least I am not excited. I am not dealing with the anticipation and just general news of my life very well lately. Unfortunately my boys get a bit of the radiating tension but they are handling it well. I will show up at the hospital at 9:45 escorted by my Mom. Our friends, Tiffany and Bryan are taking Zane for the day and having a pool day. Zane has been really requesting some play time with Brianna so this is perfect. He needs some super sized play time. Paul is working because that is where we need him to be. Believe me, we will have a few other days that he will have to take off so this is just an easy day to keep him up with his work. Then Zane will be entertained by my Mom on Friday most likely while I see what kind of healing and pain to expect. I don't expect to be able to sit up for a couple of days. We will see. BUT on Friday and through the weekend the James Family are gracing us with a weekend long visit. This is awesome. It will be a great distraction, provide a lot of help and two more kids for Zane to play with. Sara and I are even discussing sneaking off to get a pedicure!! Crazy stuff!!!

Meanwhile on a happier, lighter note... Zane found a Spiderman scooter at the thrifts store yesterday!!! It was $6 (what a steal) and we took it to the park today with his helmet for a little spin. I don't even know how he understood right away how it all worked. So cute!

(The above picture is because Zane REALLY wanted to take a picture of his scooter all by himself.)

Also, I made some new towels yesterday. I love these things. Sara made a little tutorial for these on her site here. But when I made them this time I just dug through my scrap basket and make them all kinds of sizes just depending on what I had. I LOVE having these to wipe down my kitchen and wash dishes with. Whipping up MANY more of these soon!

AND.... Tonight, after returning home from dinner, my boys decided to do a late night dance party in the kitchen. The music is Zane's music jammin' from my phone on the kitchen counter. It was so funny and Paul was quite the funkster!! Yes, don't worry, he said I could post this. He is so awesome. I was smiling so big and laughing so hard because I was so proud to have such happy beings in my life. What a lucky girl I am!