The MacDonnells

It's Been a While Old Friend

2011-09-25T22:40:00.001-05:00

Yes, yes it has. It's like I have 3 kids and a crazy life going on or something! Well now to catch up.

Theron is in Kindergarten now and L.O.V.I.N.G. it! So much so that he doesn't want to have the weekends off. I have had to explain to him that he might not want it, but his teacher NEEDS the weekend to recoup! Haha! It also helps that his little girlfriend of TLC is in kindergarten there too this year! He's at the Harmony charter school and I couldn't love it more. They hold the kids to a high standard of behavior, respect and acedemics. They are literally preparing kids to go to college from kindergarten.

Lukas is in PreK again this year and at another new campus. Long story short, I was told to enroll him online since he was a returning student, but since he was going from PPCD to regular PreK, I was actually supposed to enroll him as a new student. So, he ended up at the campus that had an opening for him. I guess it worked out since he's at the home campus for his VI and O&M therapists. After a few weeks of rough drop offs, he is finally comfortable with being left at school for a couple hours. He is also getting more therapy time this year. He is learning his braille letters now and continues to learn great mobility skills. He is so proud of his walker (a pre-cane) and loves using it. One of these days when he realizes his cane isn't a sword or light saber or bat, he'll get a regular cane to use. Silly kid!

Liv, she's a monkey baby! She loves to climb on EVERYTHING now! She is almost 11 months old and I absolutely can't believe it! She is cruising along anything that will hold her up and takes a couple steps here and there, but since she's the princess, she hasn't had to learn to walk since she's carried around everywhere. :) She has a lot of hair now, enough for super cute bows and flowers, but now she knows how to pull them out so I'm learning to deal with that disappointment. She doesn't like it when the boys are at school and I think the highlight of her day is when we go pick them up. She just babbles to them non stop when they get in the car! She can wave (when she wants to) and is saying Mama, Dada, Dog Dog and she's really trying to say Bubba. She's such a happy baby and doesn't stop smiling. She is definitely the family favorite right now and we will all admit it!

Life is still going on for Kurt and I. He is getting his school paperwork done so he can finish up his last year and a half for his degree. Geology/Construction something or other. Terrible wife, I know, but at least I have an idea of what it is! I'm working on building up my Melaleuca business and it's going really well and I just got hired to be a Poppyseed Project Teacher for TX! Both are things that give me something for me to have fun doing and get paid, so I'm happy I get to help contribute to our finances.

I have been sewing a few things lately too and about to work on a really fun quilt for a really good friend of mine. I made the quilt and bumper pads for my new nephew and a couple quilts for a friend of my mom. I will eventually post pictures on this entry! I'm terrible about taking pics though! I need a little camera to keep in my pocket so I am not always using my phone camera. One of these days. :)

Use Your Words

2011-06-04T00:19:00.000-05:00

I just entered this into a contest for a sewing/embroidery machine! I love how it turned out and it's going in the boys room tomorrow :) I used this saying since it's something we've been saying to the boys since they were babies. We read the "Guess How Much I Love You" book to them at bedtime and Kurt even got me a necklace for my birthday this year in the shape of a crescent moon with this saying on it. I hope you like it as much as I do!!

Crafting is my new addiction...... sorry honey.

New to Debut

2011-05-24T23:58:00.000-05:00

...............but not just yet! :)

A little hint. Something brown and something blue, something homemade just for you!

Yeah, I'm sewing something fun! Well, when am I not sewing something fun??

I can't wait to post pictures though. I have about 5 projects I need to get to work on and another 3 projects I need to start on! One is a baby shower gift for a great friend, another is a baby quilt for a friend of my mom's and another is an embroidery piece to enter a contest for a new sewing/embroidering machine by this weekend! (Just the embroidery one by this weekend- http://www.prudentbaby.com/2011/05/prudent-baby-use-your-words-contest.html). I would like to say it's kind of overwhelming, but I can't lie! I love being busy sewing and crafting. Kurt has his golfing and I have my crafting. Why did we have to both pick expensive hobbies? At least I can sell mine (if I wanted to, and I do....eventually.....down the road.......someday.)

Anyway, here a few pictures to go with my many projects I am working on!

Just part of the embroidery project.

An idea for the baby shower gift (will customize and add some other cute pink stuff!)

(finished pics coming soon)

For Lia and Will

Yes, finishing the rest of Liv's stuff still. Yes she's almost 7 months old (holy cow!!!!)

Susie and Charles

Aaaaaand last but not least, Monkme needs surgery to reattach his arm.

Are Mormons Christian?

2011-05-02T22:53:00.000-05:00

Are Mormons Christian?

I loved reading this article.

Make It and Love It: Using a Serger...

2011-04-15T13:58:00.000-05:00

Make It and Love It: Using a Serger...: " .Many of you have noticed. And many of you have asked. And yes, I finally am using a serger. (Or overlocker.......same th..."

My Backyard Eden: My Family Rules

2011-04-14T16:25:00.000-05:00

My Backyard Eden: My Family Rules: " I’ve been wanting to tackle this project for a long time. I first saw this version of Family Rules over at the Pleated Poppy.&#..."

I've got a problem

2011-04-06T13:33:00.000-05:00

If you haven't noticed my ever increasing list of craft blogs (and those are just one's I have time to add a button for) I have a growing addiction to all things crafty.... Ok, I have an addiction to stalking blogs about all things crafty. I am dipping my toes in too, but I definitely read more than I do. I have been in love with making cute quilts for a while and now that I have Livvy, she is getting all kinds of cute things made for her. My poor boys have been soooo deprived! I feel guilty and giddy at the same time when I'm making stuff. Right now I'm making my first dress for Liv for Easter. I pulled one of her dresses out and made a patter as best I could. I though for sure I had picked an easy on to copy.... Shirring and ruffles? Easy? Sure. Putting them all together and having it straight and cute looking, not so much! But, it's coming together.

And then my super talented SIL has made me fall in love with Modge Podge. I stink at it, but it's fun to try and come up with cute things to cover in cute paper and glue and make a huge mess in the process! Oh, and now that I have a Cricut (and I totally figured out how to cut (some) fabric with it!!!!) I'm going to be in even more trouble!!

So enough of the inane ramblings of an addict. I've got to go open and Etsy shop to make some money for my ever increasingly expensive addiction.

Make a Pretty Rosette Necklace - CraftStylish

2011-03-24T22:51:00.000-05:00

Make a Pretty Rosette Necklace - CraftStylish

How to Create a Rolled Hem - CraftStylish

2011-03-24T22:43:00.000-05:00

How to Create a Rolled Hem - CraftStylish

It's happening.

2011-03-11T14:09:00.000-06:00

Lukas has had a port in his chest since November 21, 2007. This little device has allowed the docs and nurses to give him his various cancer drugs, antibodies and blood transfusions for the last 3 years. In July of 2008 Lukas got an infection in the line of his first port and we had to have it removed. You never really know how much that little thing helps until you don't have it any more. The chemo drugs weaken the veins of those on it and Lukas was no exception. He had to be on strong IV anitibiotics for 2 weeks after his port was removed to clear up the blood infection so he could get a new port put in. He came out of surgery with an peripheral IV (like the ones you or I would get at the hospital). That one lasted a few hours before the vein it was in collapsed. Over the next day, he went through 12 different pokes in various parts on his body to find a vein that would last long enough for his medicine to be administered. Finally, when we were out of places, he went up to PICU to be sedated and have a PICC line placed in the jugular (the only vein large and strong enough to keep a line in). Lukas was just over a year and a half old when all this was happening and to watch my baby being poked over and over again was heart breaking. I cried as much as he did, but I knew it had to happen to get him better.

Finally after a 13 day hospital stay, lots of pokes and IV's, a PICC line and a LOT of tears, more antibiotics at home, Lukas got his new port placed. He has had it in ever since and tomorrow morning at 7:30am, his surgeon will be taking it out.

This little device has been a life saver, literally. Taking it out signifies the end of Lukas treatments and the beginning of life after cancer. He'll forever be affected with the side effects, but those are treatable and easy compared to our journey these last 3 years.

Tomorrow starts a new chapter in our book and i can't wait to see what is in store for us!

Holy Crow!

2011-02-24T11:04:00.001-06:00

Ok, since I haven't posted since J-U-L-Y!!!!, here is a very quick update on what has happened since!

Lukas' Make a Wish trip to meet Jack Johnson in Virginia Beach, VA
Lukas started back at school (PPCD)
I had a baby
Theron started back to MDO (TLC @The Woods UMC this time)
We've worked on the house more
Indy is a spaz
Liv is almost FOUR months old now!!!!!
Lukas got glasses
Theron is starting to read some
Lukas can get himself dressed and shoes on pretty much all by himself (big accomplishment for a blind kid!)
Liv is all smiles and giggles now
I have two new sisters (in-law)

And here are a few pics to go along with this horrible, no good, very lame post:

Things I Love

2010-07-20T16:10:00.000-05:00

How Lukas says "smallowed it in my froat" when he swallows his gum
How obsessed he is with fans (the electrical ones with gaps big enough to fit his little fingers in......
How he immitates sounds he hears, like the hair dryer, the ticket reader at the airport, Kurt's hair clippers, cars and motorcycles. Each have their own distinct sound!
How cuddly Lukas is
How much he understands things, in a complex way.
Like and dislike how amazing his memory is.
How he potty trained himself-swear it!
When he sings "Jack"songs.

Love how things are so black and white for Theron.
There are good guys and there are bad guys. The end.
How much of a boy Theron is. He's all about sports, Transformers, Star Wars, Spiderman, Superman, X-Men
How he will talk the ear off of anyone that shows interest in his transformers he takes with him just about everywhere! (The flight attendant yesterday made the mistake of complimenting him on his transformer was stuck in the aisle for 20 minutes talking about everything from the transformer plots to BOTH movies, to his past birthday themes and what he wants for the next two years, to what he's already been for Halloween and what he wants to be this year and everything in between!-It was SOOOOOOOOOO cute!)
How much he wants to learn-about EVERYTHING. He wants to know how things work and why, and in detail. It's frustratingly awesome :)
How many times he reminds us he'll be 5 soon and wants to play football (can't play with the YMCA until he's 5).

How laid back this baby is! She kicks around but nothing like the boys constant battle in my uterus!
How excited the boys are for her to come.
How Lukas asks everyday when Olivia will be here.
How Theron comes up and gives my belly kisses randomly.

AND, how hard Kurt works for our family and the chance I get to be home with my boys.
How good he is with the boys.
His smile when the boys are playing with him.
How laid back he is.

How much fun and relaxing we got to do as a family this week. :)

July 3rd, Our Independence Day

2010-07-03T10:18:00.000-05:00

Wow!!! I'm on a roll the last few days! Bloggers block is cured! hahaha

Anyway.....

July 3rd, 2008 we were on the last day of a 13 day stay due to Lukas 1st port being infected, having to have it taken out, blood cleared up of infection and a new port placed. It wasn't anything new, not a big deal to be there for so long, sucked that we were in isolation most of the time because of Lukas fever, but we got his scans done while we were inpatient so we didn't have to worry about waiting in the waiting room with an NPO baby (meaning Lukas can't have anything to eat or drink for a few hours before his sedation for scans and = a fussy little boy). The only thing that sucked was being in the hospital for yet ANOTHER holiday, we had hit every other major and a few minor holidays since Lukas diagnosis. So when we were told we would get to go home that day, we were just a little bit excited! Dr. Howrey was on rounds that day and when he came by we didn't think anything of it. He is a happy guy, loves his job and loves the kids he works with, but when he came in with an extra big grin, it was out of the ordinary. First thing he said was "I've got scan results! Wanna hear?" Next thing he said was "They are ALL CLEAR!!!!"

Wow, wow, wow, wow, wow! Speechless, ecstatic, giddy, shaking, I was all of those things and more. Lukas didn't have cancer in his body anymore!

So we dub this day our personal Independence Day!

The end :)

Olivia's stuff

2010-07-02T15:56:00.000-05:00

So I have a baby girl coming, what better way to celebrate than to get her bedding picked out!!!! I haven't found fabric yet, but I plan on making her quilt, bed skirt and bumper pads myself. I just printed out the patterns and list of things I need (I'll have to do a little at a time, think this might, MIGHT, be a little expensive! =})

Here's a pic of the two quilts I'm deciding between. Probably going to go with Laura Ashley type fabrics, pastel pinks, blues, greens with lots of flowers and paisley! Going super girly!!

Boston Med

2010-07-01T21:22:00.000-05:00

I love, LOVE this show. Just makes me want to finish an RN degree even more!

Just thought I'd share :)

Pink, my new favorite color.

2010-06-28T11:19:00.011-05:00

So this last Wednesday we found out that the baby in my belly is a GIRL!!!! I am so excited! The boys are too, they've wanted a little sister for a while. The boys and I love Olivia for her name, Kurt likes Grace (wants to call her Gracie). So she'll more than likely be named Olivia Grace and both parties are happy.

We were supposed to go in 3 weeks ago for the sonogram, but Kurt has been out of town and we really wanted to work it out where he could be there. It didn't happen, but I had a brilliant plan! I bought a "Congratulations Baby" card at the store and asked the sonographer to just seal up the revealing picture in the envelope and we'd open it when Kurt got home. So three weeks and an extra day and we found out! I was DYING to know!!!! It was hard not to just call him and let him hear what was going on during the sono. Theron was dying to know and kept asking her "is it a girl?" over and over. I asked him a couple weeks ago what he'd do if it was a boy baby. He said "we can just send him back and ask Heavenly Father for a girl". Out of the mouths of babes right??!!

Then, Thursday night when Kurt got home, first thing we did was open the envelope to find out and I swear, not even TWO SECONDS after we opened it he had posted to Facebook that it was a girl... I think he's a little excited!

I am starting to feel her move more and the boys come up and talk to my belly all the time and "give Olivia kisses". They are ready for her to get here. Lukas keeps asking when Olivia is coming home. So cute!

Here are our sonogram pics so far.

These two are her first pictures at 10 weeks.

AND, here are the pics from Wednesday. The first is the best face shot we could get. The baby kept scooting away, shy little thing! And the second, well, it speaks for itself :)

Two Years

2009-11-19T12:56:00.002-06:00

Had you told me 2 years ago, you will be ok, you'll get through this, everything will be fine, honestly I wouldn't have believed you. All I could think about was the CT scan that we saw with the golf ball sized tumor in Lukas HEAD!! It was in his head, possibly in his brain! How could you say it would be ok, you'd get through it? How, I just couldn't believe it. One of the things we were told was treatment would be aggressive, there isn't a cure and there is a good possibility that he might not make it through the chemo. Then we were told it wasn't a brain tumor, that it was Neuroblastoma and it was ALL over his little body. He was diagnosed as Stage 4. We removed his adrenal gland that was the primary tumor, couldn't take out the tumor in his head yet, massive blood supply-VERY dangerous, so we started chemo, got into a groove, a routine, a "New Normal". Lukas kept having headaches. They should be going away now right? The tumor in his head was supposed to be shrinking. It didn't. Then we have to make the decision to stop chemo and try radiation, craniotomy was discussed, but was deemed a last resort. Stop the poison from going into his little body and our ally, our defense against the cancer to try and kill the enemy in my little baby's head, my 13month old baby's head. We do 14 rounds of chemo (5 days a week, weekends off). Did it work? Scans showed cancer in other areas responding to chemo, not much change in the tumor in his head. Back to more aggressive chemo, lets try chemo that works well for brain tumors. Nope, nothing. What to do now, can't keep feeding Lukas pain meds all day. In comes the Neurosurgeon. We are told it's time for the "last resort option". Craniotomy. Cutting into my baby's head and trying to get the tumor out without hitting the major arteries it's attached to. 50/50 chance he'd make it through the surgery. Very high risk frontal lobe damage could be done, never mind the chances of that damage already having been done with radiation. We get sent home while all the doctors get their team ready and their game plan ready. We have to enjoy the last few days of having our Lukas with us. Whether he was alive or not, chances were he could come out a different baby. He comes home with us on such high doses of steroids to help keep the tumor from swelling, but the rest of his body is so swollen that he is miserable. We get the schedule for the surgery. The morning I take Lukas to the hospital with instructions to bath him with a special soap that will kill all the bacteria and germs that can't be on him while his head it standing wide open. That was the most somber day of my life. Not knowing what the future held, not wanting to think the worst but not being in control of my thoughts, my heart about to burst from my chest, hurting so bad and not being able to show it. We had to be happy, Theron couldn't understand what was going on. He was only 2. Kurt and I had been having the "what if" talks for the last four months, but now we were faced with them in a very real way. How do you say goodbye to your baby? How do you sign the consent form for what they wanted to do? How do you willingly hand your baby over to the nurse and walk away? How do you sit and wait for 10+ hours? How do you not break every time the nurse calls to give you and update knowing that any one of those calls could be the one you are dreading? We never expected to be told what we were when the docs were done with the surgery. They found no signs of live cancer. The tumor had grown in the bone and made it swell. That was the mass we kept fighting. Radiation had successfully annihilated any live cancer there was left. The "mass" was debulked, the pressure was taken off the optic nerve and skull base was fixed up as much as possible. Relief, answer to prayers, miracle, blessings beyond measure. No words could explain that feeling of knowing Lukas was still alive. Nothing else mattered, he was alive and now the waiting to see if he was still Lukas began. After we were thrown out of PICU 3 days after his surgery, we knew it was still our tenacious baby Lukas. 13 days after surgery we were sent home. The road got easier from there. We finished 4 more rounds of light chemo to kill off the rest of the cancer. July 3rd will forever be our Independence Day. We were told Lukas showed No Evidence of Disease. We won't hear "remission" any time soon, this was the next best thing. Next was antibody therapy to put his neurological disease (Opsoclonus Myoclonus Syndrome OMS) in remission. I sit here on the last day of his antibody therapy. The feelings are still fresh. Although Lukas made it this far, I've experienced loosing a baby to the disease, and have read about more than I can handle earning their wings as well. We are lucky and we know it. We don't take a day for granted that we could so easily have lost. Lukas is a vivacious, head strong, curious, verbal almost 3 year old. Yes I get frustrated with him, yes I loose my temper with his at times, but looking into his too old for a baby eyes, I see eternity and a love so strong I could never deny the blessing he is in my life. Handing Lukas off to the Neurosurgery Nurse I finally understood to some degree what Heavenly Father felt seeing His Son go off to His death. I got to glimpse life through His eyes. That has strengthened my faith so concretely. I know there is nothing we can't face and I know that I can handle whatever I am faced with. I have met some of the most amazing people on this journey, I've gotten closer to my husband, I love deeper, hurt harder and care more strongly than I did before. For that I'm thankful.

Holy Tomatoes!

2009-09-11T15:50:00.003-05:00

It's been forever since I've posted last. Lots has been going on and then again lots of nothing too! We go through cycles of busy and then nothing.

It's good though. Theron is back in school (Preschool through my mom's church). He was in their Mother's Day Out program over the summer and loved it. He to the preschool program now every Tuesday and Thursday from 9am-2pm. He absolutely LOVES his teacher Mrs. Marsha. He comes home and talks about his new friends and things he did during the day. It's so great to see how much fun he has doing his own thing!

Lukas is still doing vision therapy twice a week. The therapists have introduced a cane to Lukas. He LOVES it! They are training him to use it correctly and then we'll get to take it home so he can use it all the time. The goal is to get him mobile and independent so when he starts school in January he'll be able to do things on his own more than not. He'll be learning lots of things when he starts school. Braille is the big thing. We have to prepare him for a life of no/limited vision even though he's getting some back. We don't know how much he sees or how much he might get back, so we prepare. He's doing great though! He'll be starting Mother's Day Out at my mom's church every Tuesday. He's wanted to go to school with Theron so we are putting him in one day a week after talking to the teachers and program director. They are ready for the tornado that is Lukas.

Anyway, I'm uploading pics from our Colorado trip in the next couple of days and then I'll post them and the great stories of our 1st vacation in 2 years!!

Whew!

2009-07-21T15:42:00.002-05:00

Long time, no post. Guess life has gotten away from me the last few months. Have some of our family pics up on Melissa's blog (Melissa Fullmer link to the right ->). You can see how much a difference a year and a half makes! She did our pics last March before Lukas craniotomy and he's changed so much since then. Gotten bigger, he's walking and talking and full of 2 year old curiosity and attitude!

Theron's been in Mother's Day Out the last 2 months (it's his 'school' as he likes to call it) and he's got a few new friends and LOVES his teacher Mrs. Marsha. He won't let me tie his shoes in the mornings, Mrs. Marsha has to do it, Mrs. Marsha told me this or that, it's soooo cute!

As for Kurt and I, not much has changed except our sleep schedules (or lack thereof). I'm working out now, and working from home, Kurt is still at his same company and loves it and we are (finger's crossed) going to Colorado the beginning of August. Plans seem to get thrown out as soon as we make them so we'll see.

Not much else to report, I know I'm getting behind on this and I'll catch back up one of these days, for now I'm too exhausted and frazzled to add one more thing to my list, I should really be in the shower now while boys are napping and yet, here I sit......

It's been a while old friend...

2009-05-13T15:57:00.005-05:00

Oh, sleep how I miss you. You make me feel happy, less stressed out. You are my very good friend! Where have you gone!!!!!?????

So this is our nights for the last 6-ish weeks:
Dinner around 6
Finish up around 6:30 and play for a little bit longer
Bathtime at 7pm, the start of the calming process
Lukas in the bedroom by 7:30 to "Ock the baby"
Theron in bed by 8pm

Lukas doesn't fall asleep until around 11-11:30 pm, then wakes back up around 2:30 and doesn't go back to sleep until 4-4:30 then he's up around 7:30-8am ready to go. He takes a good nap, usually 2 hours starting around 12:45.

We have tried the "Stay in bed technique" courtesy of Super Nanny, to no avail, we've tried the tylenol/benadryl mix (ok'd by doc) with no success, we've let him cry it out when he wakes up, nothing, getting his back adjusted, zip, zilch, nada!!!

Never thought to mention this to Lukas' vision therapists, but when I said something about it one morning, they said kids with vision imparements often have sleep issues. REally???? So, hopefully tomorrow we can talk to the docs and decide on a possible sleep study or maybe using sleep aids for a while to get him back on a normal sleep pattern. He is on steroids for the next 5 months, he's been through hell and back over the last 18 months, not like that could have anything to do with it!

2nd Annual NB Walk for a Cure

2009-04-02T23:09:00.004-05:00

I'm SOOOO excited! This Saturday is the 2nd annual walk and we got to help out with it a little this year. I can't tell you how great it is to work with the family that started it last year. The family's little girl started it in memory of one of her closest friends that passed away in '07 and in honor of one of her friends in her Girl Scout troop. For the family to pull together and raise $20k last year (in only 6weeks and only by word of mouth mind you) and to want to do it all again... They are great! We have over 300 people preregistered and open registration at the event!

If you read this and you're in the DFW area, please come out and join us. Here is the flyer:

And if you can't come....

Pics and Videos

2009-03-20T17:50:00.011-05:00

Yeah, last post was obviously from a crappy personal day, started out crappy and ended crappy, but I got to get some snuggle time with Lukas when he was heavily drugged up on IV Benadryl and his Rituxan#2. Here's some video from Thursday night and some pics from the last two Thursday inpatient stays. Got a pretty cute baby that's been through hell and he still loves his docs, nurses and asks to go to the hospital all the time! Can't complain! :)

This is when we got in our room before being hooked up to the IV this last Thursday. He likes to sit in the window sills (sp?) anywhere he can. Don't know why.... But it makes for a cute video.

Debbie got Lukas this LeapFrog toy for Christmas. He loves music and likes to take this to the hospital with us. Lukas had just woken up from a 4+hour nap. He, luckily, sleeps through these infusions. Otherwise we'd be chasing him around with a pole, making sure his pulse-ox stays on and that he doesn't pull the noodle (iv line) too hard and de-access himself! I can honestly say, IV Benadryl is a good friend of mine!!

It takes over half an hour to upload videos so I'm done with those... onto the pictures....

Last Thursday-March 12th
Lukas favorite place to be, the rocking chair

Checking out his first big boy bed.

IV Benadryl (premed) in and taking effect.

No, we didn't drug Theron up too...

All of his equipment: IV Pole with drugs, PulseOximeter and Blood Pressure machines.

Waking up in mid-infusion, really groggy and not feeling well, but still wanted to play.

Hard to see, but his heart rate was 155bpm, stayed high (150's-160's, normal is 120's).

Decided laying down to play was much more comfortable.

This is from this last week. This first one is Lukas and our Social Worker Elizabeth. We met her in December when Lukas had his little scare and surgery on his head. She took over all the solid tumor kids, kind of sad, we've had 3 new social workers since starting in Nov '07. They just can't keep up with all the new kids.

Anyway, Lukas LOVES wheels and when she came into his room in Dec, he crawled right up in her lap and told her "I unna go fass!" I was a little embarassed, but she pulled him up and started wheeling him around our room. She's awesome!

Blah...

2009-03-19T16:29:00.002-05:00

Eck, at the hospital, can't get onto Facebook....yes I'm addicted, first step is admitting there is a problem right?? So, I can browse the net, look over blogs and now I just feel like crying. Not because I can't get on Facebook, not that addicted, or maybe I'm just not ready to admit I'm in that deep........

Anyway, for reasons I don't want to share publicly, I just feel like crying. Feel like something extremely special was taken from me and now I can never have it again. Trying to hold it together in front of all these nurses and care partners coming in and out. Talked to Kurt, nothing helps, I just want to cry. No one can say anything to make it better, I just have to suck it up and realize I can't do anything about it and move on. Just feel like part of my heart is missing, like it's been cut out. Eck....

Life sucks sometimes, doesn't it? :(

Lukas' new quilt

2009-03-17T01:15:00.005-05:00

YAY!!! FINALLY got some fabric so I could start using my Christmas present... a FABULOUS new sewing machine.

A friend of mine in KS taught me how to quilt and I loved doing it, but never had a good sewing machine, so I gave up. Low and behold, my husband knew I loved to quilt and got me the coolest sewing machine for Christmas, the only thing he forgot was fabric so I could make something!

Well, 2 1/2 months later and we finally make it to JoAnns. I got the fabric Saturday and cut, pieced and sewed the strips together Sunday after dinner. I sewed all the strips together and decided to make a border today and got the top all finished, added the lining and the backing and pinned it all up. Now all I need is a smaller quilting frame and I'll get it all quilted and post more pics.

Vacation!!!

2009-02-25T17:40:00.001-06:00

We are leaving Friday morning for Kansas City!!! I'm so excited, Kurt is taking me to a nice hotel and we'll spend the weekend visiting with some of our amazing friends we haven't seen in a few years!!!! I'm so excited!!! Can't you tell? I've overused the exclamation points!!!!

Will come back with lots of pictures :)

Out with the old, in with the new

2009-02-12T16:42:00.002-06:00

So I changed my background and the music. The boys are into dancing now... especially Theron. If you haven't seen him "shake his booty" you are missing out!!! It's hilarious, all I can say though is he sure didn't get his dancing abilities from me! White boy can dance!!!

So, anyway, I put some fun music on because Lukas likes to "heer a muusik on compooter" and Theron likes to shake his booty to it, so everyone wins :)

Life is still going fine for us, haven't decided on next round of medicines for Lukas, or if we'll do them at all. Clinic is next Thrusday, we'll go over it then. He's caught up cognatively, developementally, physically though and he keeps learning and showing how amazing he is every day.

Theron's learning to write his letters right now and is really good at drawing faces. We haven't shown him how to, he just started on his own, and of course he's a little sports player. He loves baseball, soccer ball, basketball, football, and likes to watch hockey now too.

Kurt's still working hard and loves his job and I'm trying to get my house all cleaned out. We've collected so much STUFF this last year that it's very much time to clean out.

I'll post some new pics later! Hope everyone else is doing fine.

Random babblings...

2009-01-20T09:20:00.002-06:00

So I haven't had a real post in some time. I just get busy and mean to, but never get around to it.

Not much going on other than the normal and a couple of minor surgeries for Lukas. Our weeks consist of vision therapy on Monday's and then we usually have one doctors appointment or another at least once a month. Other than that, we are trying really hard to get back in the normal swing of things. Theron enjoys superheroes, any of them, but especially Spiderman and Ironman. Lukas likes playing superheroes with Theron and is really good at saying "piderman" and "i-urnman". They dote on each other too, Lukas wants to tell bubba "wake up" every morning and Theron is really good at holding Lukas hand or helping him navigate through any obstacles he might be walking towards. They both love the park, once it gets a little warmer we'll be at the park pretty often.

Theron started Sunbeams this year! I can't believe he's old enough to be a Sunbeam, but he loves it. When I got him from class Sunday, he had a CD the primary presidency had given all the kids with the songs for this year and told me "mommy, we learned songs about Jesus. I like my class"

And Lukas loves Nursery. As soon as we are out of the chapel from Sacrament, Lukas knows his way to his classroom! A few weeks ago, Kurt was walking him in there and as soon as Lukas was in the door, he shut it in Kurt's face without even telling him bye!

Kurt really loves his job and he's sure staying busy. He's up by 5am at the latest every morning and works until at least 5 or 6pm every night. His company has been so good to us this last year with everything we've dealt with. They want to help with our foundation too, which is huge for us to know they care that much.

Now we're at the point where we're just working to get a handle on Lukas vision. This month and February we are just working through all of the Neuro and Opthamological docs to see where to go from here. We finished the first, and least amount of side effects, drug to help his eyes stop dancing (opsoclonus-neurological disorder caused by cancer) and now we only have 2 more drugs to try, both with significant side effects, more hospital stays and possibly more neurological side effects. All on top of trying to resume a normal kind of life.

We're doing it though and we're happy. We're in a good place, we are moving forward, eyes on the prize!

Pictures, pictures and more PICTURES!!

2008-12-28T21:16:00.004-06:00

Starting with Theron's Spiderman 3rd birthday party, Bethlehem Revisited, then Lukas 2nd Super Lukas birthday party and finally Christmas! Enjoy :) (132 pictures!!! And that's scaled down!!)

Theron's 3rd, Lukas 2nd, Christmas 2008

Let's Party!!

2008-12-07T23:02:00.002-06:00

For anyone reading this, consider yourself invited to Lukas' 2nd Birthday Bash!

When: Saturday December 13th from 5-8pm
Where: Stake Center, 1019 Big Stone Gap, Duncanville, TX

He doesn't need any presents, just come and help us celebrate him making to his SECOND birthday!! This is a big deal for us after this long year!!

I will have my camcorder up and would love to get everyone that wants to record a quick message to Lukas. I will put the videos away and when he's older let him see them. He will be able to see the people that prayed for him, supported him, cared for him through what is possibly going to be the hardest time of his life!

I really hope to see everyone there that can make it. We'll have cake, ice cream and music!

Interesting...

2008-11-30T11:44:00.001-06:00

So Debbie has been looking for baby names for Chelsea's baby. Looking through baby name sites she found this:

THERON:
The name Theron is a baby boy name. The name Theron comes from the French origin. In French The meaning of the name Theron is: Untamed.

Hmmmmm.... Good to know he lives up to his name!! Hahaha!!

Happy Birthday Theron!!!

2008-11-27T22:19:00.003-06:00

Today Theron turned THREE!!! Holy cow!! I can't believe my baby is three years old now. Just crazy how fast he's grown. Nana made him a chocolate cake for to celebrate today, but she's making him a Spider-man cake for his actual party on Saturday. Yes, he will be in his Spider-man costume. :)

Just one year ago...

2008-11-18T12:40:00.003-06:00

So weird that this was only a year ago... a lot has happened since then.

TWILIGHT!!!!

2008-11-18T00:32:00.003-06:00

AAAAAGGGHHHH!!!! I feel just like a teenager again! I'm SOOOOO EXCITED TO SEE THIS!!!!!

I'm making Kurt take me to the Midnight showing. My brother is going to come stay with the boys while we go!!! I'm GIDDY!!!

Oh, Edward...

Where did the time go!!??

2008-11-10T20:51:00.006-06:00

Wow! I didn't realize it's been so long since I've updated my blog! I guess there has be a lot that's happened in the last month.

We just finished our Golf and Walk this weekend. Not the best outcome, but it was our first time and I think we learned a lot! Our next golf tournament will be GREAT!

We enjoyed Halloween. Theron was Spiderman, it's all he could talk about these last SEVERAL months! He's going to have a Spiderman birthday party too in a few weeks. Lukas was Clark Kent. I made his shirt with the super "s". Pretty proud of myself! Everyone started calling him Super Lukas during his treatments, so it was a perfect fit for him.

Man, don't know what all else has gone on, a lot of work on our foundation. We've been working hard to get our name and mission out there.

Anyway, here are some pics from the last few weeks. Enjoy.

Theron and his Baby Sam (he picked the name out)

His "I didn't do anything..." face

Spiderman with chemo gloves!

Hamming it up for the camera! He was SOOOOO excited to have this costume! He's worn it for 3 days straight as of this picture (yes it's been washed).

Super Lukas, also known as Clark Kent

Can't get enough of the hot dogs! (huge step for a boy who hasn't touched red meat since finishing chemo!)

Of course his shoes and socks were off as soon as he got buckled into his car seat. It's a fight to keep them on, so if he's happy and it isn't cold, it's a fight we choose to avoid!

Theron saying "mommy no more pictures!" Ha ha! I'm horrible!
He LOVES being outside!

Lukas, not so much. Outside has a lot of new noises and it's hard to figure out his surroundings with all the new textures. I think it's sensory overload for him.

1st Annual Golf and Walk Classic!!!

2008-10-07T17:22:00.002-05:00

Some relief...

2008-10-02T22:33:00.001-05:00

3 month scans were still clear! www.caringbridge.org/visit/lukasmacdonnell

Feel a little better now. Going to bed :)

Number 8

2008-09-30T00:02:00.002-05:00

Lukas is picture #8 on this BOSTON news blog! (Picture by the talented Melissa Fullmer).

http://www.boston.com/bigpicture/2008/09/childhood_cancer_awareness_mon.html

Look at the pics and leave a comment thanking the journalist for doing this photo story. It's a HUGE step in the right direction if you ask me!

$700 Billion or $20,000

2008-09-24T17:57:00.003-05:00

That's the difference between a greedy Wall Street Idiot and a child fighting cancer.

Need I say more?

National Childhood Cancer Awareness Month

2008-09-17T23:03:00.005-05:00

We are halfway through the month and have yet to see any news or ads or anything honoring this month for our kids other than families and groups that are directly linked to childhood cancer. The only two exceptions I know of are Chili's (eat there Sept. 29th, profits go to St. Jude's for research!) and a Top Rated Article on Forbes, and only because the writers daughter is battling osteosarcoma.

Our kids don't know they don't have cures for most of these pediatric cancers, don't know that one of their 5 cancer friends will die of cancer. People turn away when they hear "childhood cancer" because they don't want to think about the devestation it brings to such young children. Yes the bald heads are cute, but that's all they want to see, not the bone thin skeletons walking around because they are too sick to eat from the poisonous chemicals we are using to kill the poisonous tumors in their little bodies. It's a tough world to live in. Before Lukas was diagnosed, cancer to me was my grandmother's breast cancer, her sister's breast cancer, their other sister's thyroid cancer, my aunt's lung cancer (brought on by decades of smoking), and my dad's throat cancer (and he doesn't smoke!). That was it, my vocabulary didn't include CHILDHOOD cancer. Older people got it. One of my good friends in KS had Melanoma, she's my age, but they caught it and cut it out. Beyond that, I never knew and was pretty much oblivious to children getting cancer and absolutely beyond oblivious to BABIES getting cancer! November 18th changed my life and the way I see the world now..... Kurt and I were told Lukas had a tumor in his head that had most likely been there for months, MONTHS!!! We were rushed to Cook Children's and after agonizing hours in the ER there, moved to our now second home on the 3rd floor-Hemotology/Oncology unit. (Hemotology is for blood disorders, Oncology is for cancer). Since then I have been introduced to the lack of funding and treatments for Lukas and all the other babies and kids battling cancer every day. Here are the cold hard facts.

September is Childhood Cancer Awareness Month

*Each school day, 46 children are diagnosed with cancer.

*On the average 12,500 children and teens will be diagnosed with some form of cancer each year in this country.

*One in 330 children will develop cancer by age 20.

*Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.

*Cancer remains the #1 disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS COMBINED!!

*In the U.S. almost 3,000 children do not survive cancer each year.

*Over the past two decades, only ONE new cancer drug has been approved for pediatric use.

*Currently there are between 30-40,000 children undergoing cancer treatment in the U.S.

*As a nation, we spend over $14 BILLION (that's with a B!!!) per year on the space program, but only $35 MILLION on Childhood Cancer Research each year.

*There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

*Research funds are scarce as most money is diverted to well-publicized adult forms of cancer, such as breast and prostate.

*Right now, this second, somewhere in America, there are 7 children fighting for their lives who won't live through the day.

Sorry, this is a little old...

2008-09-02T14:36:00.007-05:00

Lukas has spent the last 2 Sunday's in NURSERY!!! How cool is that? Now I get to go to my classes! Don't get me wrong, I like our empromtu Mommy time in the foyer with the other moms that can't get their baby's to fall asleep so they can go to Sunday School or Relief Society, but man it's so NICE to be able to sit through those last 2 hours and actually get something out of it!

Our ward is on the 1-4 schedule this year and for some reason, we seem to be cutting it WAY close every week to get there on time! Nice, huh?! Anyway, our usual routine is to go to church and then go home and get changed and head down to Debbie's for the rest of the day. Well, Kurt didn't have to work last Monday (Labor Day) so we spent an extra long time down there this weekend. We were playing our weekly game of Boom Blox and by the time we realized what time it way, it was already midnight! If you have ever come over on Sunday's you know how competitive and crazy it gets. Anyway we packed up really fast, got the boys loaded in the truck and head out. When we got to the light at 67 off ramp and 1382 the light was red so we sat there. This girl came speeding up to the light and then slammed on her brakes and almost went into the intersection in the left turn lane next to us! Yes, I made a rude comment about her being drunk... And then the light turned green. We were in the middle lane (turns left or goes straight) and we turned left, we didn't even make it into the turn before that same girl t-boned us.... GREAT!!! She hit us going pretty slow so we were all fine, just frustrated, so we pulled onto the shoulder and waited for her to pull over. Instead she straightened out and started driving off! So Kurt got behind her and I called the police. This was about 12:30am. She proceeded to drive away through neighborhoods and we followed with the police dispatch on the line. About 10 minutes later she finally pulled over and got out of her car. Another car was behind us, he had witnessed the whole thing and had followed with us. He came over to our truck and the girl started apologizing and saying she was upset, just broke up with her boyfriend. I wanted to jump out the window and tackle her, but I just said (yes very mean toned) that we weren't talking until the police showed up. 4 cruisers pulled up behind us about a minute later and the circus started. They took Kurt, the girl and the witness and started questioning them while the other 3 police checked on the cars. I had just gotten out when our cop came to check on me, I told him we had babies in the car, you could tell he was upset about that! He was really nice, Theron was so excited to see a police up close! And, of course everyone stares at Lukas scar on his head, so I had to explain that. He stayed with the boys and let Theron chat him up for a bit while I went over to talk to the cop questioning Kurt. I had to tell him the whole story in my words. I heard another cop ask the girl if she was intoxicated while we were talking and then a minute later heard the cuffs clink! Nice... I went back to the boys and the cop with them. Theron was telling him all about baseball and his Marimo (mario) game and anything else the cop would listen to. I got called back to Kurt a minute later and they asked us if we wanted to press charges because she had failed her field sobriety test miserably. Yes we are pressing charges. The rest of the next couple hours was getting insurance info, victim (us in the truck) info and witness statements. We didn't get home until around 3am. The girl got hauled off to jail for a hit and run and DUI or DWI, not sure which one... They guy that followed us was really nice, he stayed and gave his witness statement. And the poor cops, Cedar Hill cops, had all been working overtime and had already had a really bloody drunk driving weekend. We were VERY lucky to have gotten out of this with little damage to the truck and all of us intact! If she had been driving any faster, with her car so low, she would have flipped the truck and this wouldn't have been such a good outcome.

Before we left the cop staying with the boys said that the drunk girl was put in his car and she was throwing a pity party for herself and he told her to SHUT UP and get over her princess pity party, she could have just killed a whole family in one blow, he told her Lukas, a baby, had just gotten done fighting cancer and she could have just killed him, and she shut up right away. He was a really great guy.

So that was a nice start to our Labor Day! Thankfully the rest of our holiday was nice. We went to the Currier's, had some pasta and grilled chicken, played some Super Mario Slugger and then got to go outside while Ethan and Theron played T-ball for the rest of the evening. Let me just tell you, those two have some talent. For them to throw and hit the ball as well as they do, so young, I can't wait to see them in a few years!

So here are some pics, enjoy!

This guy says it perfectly!

2008-08-23T23:56:00.001-05:00

He's like my missing Hallmark card that says everything I don't know how to say!

What will really make me happy?

Grace

2008-08-23T21:58:00.002-05:00

Yes, it's my favorite name... Grace Isabelle, yes, that's what I have always planned on naming my little girl, my little "Gracie Belle", but that's not what I'm talking about.

Heavenly Fathers Grace.

Grace is the help or strength given through the Atonement of the Lord Jesus Christ. Through the grace of God, everyone who has lived will be resurrected—our spirits will be reunited with our bodies, never again to be separated. Through His grace, the Lord also enables those who live His gospel to repent and be forgiven.

I went to today's (Saturday's) session of the Women of Faith Conference with my Grandmother, Aunt and Mom. It was good, there were a couple of ladies with some good thoughts and amazing voices. I just really appreciate what I have more today. I was taken back to 8, 9 years ago when I was missing something but I just didn't know what it was and, honestly, I really didn't comprehend I was missing something as desperately as I was. Getting to see that after I found what I was missing was more of an eye opener.

I have it all now, not materially, definitely not physically!, and maybe not emotionally, but I sure have it spiritually! I have all the missing pieces as one lady described it a few years ago. When I met Kurt, I was in love, I knew without a doubt he was my "it". I just didn't fully comprehend how full he would make my life. He was a Mormon... ooh.... scary! Really? I didn't really see anything wrong with that, my family did, but I didn't understand. I grew up with kids that were Mormon and they didn't have 6 fingers or 19 toes, didn't have tentacles that I could see, they seemed pretty normal, happy, they all hung out together, what I perceived as a "click" then, but they weren't snobby, they were my friends and seemed to genuinely like me, so, I had not problems with them. Kurt being "one of them" didn't bother me. He wasn't weird, he was friends with some of my friends. Nothing strange. Luckily, and I say that with all sincerity, our relationship progressed and we started getting into deep discussions. I had just graduated from high school a few moths before I met him and I was trying to find my place in the world. It was nice to get to talk to someone about my fears, wants, hopes, dreams. He got me. Learning more about each other brought us to religion, naturally. I didn't know anything about his and he didn't know much about mine. This was a really great discussion for us, we talked about it all the time. There was a lot to learn on both sides. We decided to make a trip to each others churches so we could see the others religion in practice. Now THAT was interesting, we were loud and roudy, and his was quiet and subdued. Big difference, but something was happening. I liked it. I'm not a big, flashy person, I've never liked the showy, loud and in your face things. I liked this quiet and to the point thing. It felt comfortable, the only thing I would have changed was playing the piano a little faster, say with the recommended tempo... (yes, some of you are laughing with me on that one!) I always had questions in my heart that were never answered from anyone, family, firends, pastors. Lots of deep questions that lingered and finally I just pushed them away, because everyone else seemed happy and fulfilled, so why wasn't I? I'm a difficult person, I just wrote that off as such. But along comes Kurt and his thoughts a beliefs, and answers. I was getting answers I had long stopped asking. He had valid answers to things I wasn't even sharing out loud. I was gaining insight that I never thought I'd have. My family hated it and fought it. I didn't understand why. I was starting to feel whole, on the inside and out. This led me to want to move away so I could have that peace and fulness I wanted so badly. I found answers to every question my heart ever had in those pesky Mormons! Who knew!? I joined the church and I have never looked back and NEVER regretted it. I have all the peices to my puzzle now and I'm never going to let those go.

Now if I could just start sharing those pieces with everyone else... that's a whole other issue and topic. I'm not a very eloquent speaker, my thoughts are clear but they come out jumbled and backwards and upside down. I'll leave that to the professionals! You can reach them here.

I'll just tell you what I know, yes, KNOW. I know that Heavenly Father loves me, he sent His Son to die so that I could come back to live with Him some day. He knew I couldn't make it on my own, so He provided a way for me, He loves my that much. I know that Joseph Smith was a true prophet of God and that we have a living prophet today, Thomas S. Monson. I didn't just hear the story and think, gee, that sounds good, I think I'll go with that one. It was a trial for me. I prayed and prayed and cried and prayed some more. My family was completely against me, the tried relentlessly to make me not believe how I felt. It was agony for me. I knew in my heart that it was all true, but how could I hurt my family that way? But, to me, it's life or death. Literally. Do I go back to my family and not listen to the truth in my heart or do I accept it, knowing that all will be well if I just believe? I chose to believe. I knew it was true and I accepted it, yes there was contention, yes there still is sometimes, but none of that will matter when I'm dead and answering to Christ as to why I did or didn't accept the gift he gave me. The Holy Spirit, that still small voice testified in my heart and soul that it was all true. That's it and that's what I chose.

You don't have to believe what I do, that's the beauty of choice, but if you ever want to know, just ask. But be ready to bear with me. Like I said, I'm not eloquent, if you only knew how long this post has taken me to make the words coherent!

Enough babbling, that was just what was on my heart today. :)

Boxes, Surgery Scars, Farmers Market and Pizza

2008-08-19T11:37:00.009-05:00

Mish-mash for sure! Have some new pictures for your viewing pleasure! I'll leave the ones of me out of it...

Give a boy a box and he'll play for a while.... teach a boy to box and he'll have the box all to himself... Ha ha!!! Just kidding, I don't condone violence.... much.

Dr. Bass went above and beyond! She cut his dressings out into hearts before she put them on after putting in his new port! How sweet was that!

Good old Farmers Market! We went this last Saturday and the weather was PERFECT!! Breezy and kind of cool, even with all the people around!
Lukas loved it!
Ethan wasn't too sure about the big crowds...

I looked like a wet dog...

Jake, Becky, Ethan and baby boy Currier!

Best friends and bike racks!

And last, but certainly NOT least.... OLD CHICAGO PIZZA!!!! You're right, there isn't one anywhere in TX! My wonderful husband bought this before he left OK last week and brought it home for me! This is our favorite pizza in the world!

Double Deckaroni- two mouth-watering, piles of peperoni and cheese with tobasco sauce mixed in with the pizza sauce. Yes, sounds gross, but it's DIVINE!!! 8 slices of Heaven!

Have Plans Saturday?

2008-07-31T16:35:00.001-05:00

I do!

Lots O' Pictures!!

2008-07-28T11:50:00.010-05:00

Here are some from our last hospital stay.

What is that you ask?

Oh, yes, that was the stay where they told us Lukas DIDN'T HAVE CANCER ANYMORE!!!

Loading up on antibiotics and playing like a rambunctious little boy! (Notice the blue under his chin? It was a wrap to hold his needle in place. His port was infected so it itched really bad and he kept pulling at the needle.)

"Ock, ock!" That's Lukas for rock.

Port was finally removed and we started the game of Peripheral IV's... The game part was finding a good vein that wouldn't collapse. The next few pics all feature a different PIV.

Yes, Lukas likes to get his own vitals, thank you very much. He can do it all, blood pressure, temp, pulse/ox, and he can use the stethescope like any trained professional

Calling in a rescue card... No one came.
Theron paparazzi shy. All 12 tries and 8 PIV's later, we had to insert a PICC line. Went into his exterior jugular on the right side of his neck and then the "noodle" was looped over his ear and secured with a BUNCH of tape. He had to be sedated in PICU to have this inserted and I got to go down after it was in. Let me tell you, Lukas is the funniest drunk baby! He had just "woken up" from the anesthesia and was babbling, calling Nana, wanting a ball and trying to flop all over the place. He had a room full of nurses taking in the show! We actually got to see our PICU nurse from after Lukas surgery back in March. She was amazed at how far he's come in such a short time.

Lukas sharing his Bink with Uncle Bud... Man he's a whitey!
Theron rockin out to Guitar Hero. That kid is a guitar junkie!

Lukas took the drum sticks from another kid and started dancing and beating the drum pads. It was really cute!

Lukas decided he wanted to sit in this Bumbo and got stuck! It took two of us to get him out! Me to pull him and Beth to pull the Bumbo! He didn't think it was as funny as I did.

This is Lukas first picture after getting the results of all his scans. NED!!!! No Evidence of Disease!!!!!!! WOW!!!
Another beautiful shot of his PICC line.

And this......led to this....

New port on the right side. He needed it anyway, so this wasn't a suprise to us.

So for now we are just living life and having as much fun and good times as we can. We still have clinic visits, now just once a month though, and we are now on our 3mos. scan schedule. Don't have to see the Neurosurgeon or ENT for another year and we were just released today from our NeuroOpthamologis. So that leaves us with our regular Opthomologist and Oncologist appointments. And of course we are still doing music therapy once a week and vision therapy twice a week. I like the direction this is heading but, man, it sure feels weird. I had this horrible feeling for the last few weeks that I've been forgetting something, that we have missed appointments. He is also still on 3-4 medicines a day and getting his IVIG infusions once a month, so I guess it's hard for me to feel like we are done, because we really aren't, just done with the harsh chemicals. We still have another 6 months of medicines to take every day to make sure he's back up to 100%, he is still suseptable to infections and illnesses, but he is recovering. Slowly but surely we are making it there.

Have to post this before I forget!

2008-07-17T21:07:00.004-05:00

Ok, so two Sundays ago (yes, Fast Sunday) we were sitting in Sacrament and about halfway through Theron looked at me and said "Mom, it's my turn, I want to go up there" pointing to the stand... So we make our way out into the hall (we were sitting in the overflow), back into the chapel and up onto the stage. Our ward is amazing because there are always a ton of kids that go up to bear their testimonies. I'm always so impressed with them getting up on their own and waiting patiently for their turn.

Anyway, we waited for our turn and when it was time Theron walked right over to the stool, moved it in front of the stand, Ryan lowered the microphone and Theron climbed up. He pulled the mic down and said, really loudly, "Hi guys" and then froze up and wanted to get down!

So, I guess we can chalk that up on the fairly successful testimony of a 2.5 year old.

And, yes, if you are wondering I did bear my testimony after him, though most people thought we were new to the ward since we have a million new families now!

I've got to retrain my brain.....

2008-07-15T15:20:00.006-05:00

So I met Will for lunch at Pizzaiolo's today with the boys and the first thing I see when I walk in is a little girl, probably 6 or 7 with a buzzed head.... What does my brain do??? Look for scars, any paleness, and central lines dangling or a port protruding! I had to stop it there and think that it was just how she wanted it, or she got gum in it or lice...

Man what I wouldn't have given for Lukas to have been bald from gum or even lice! Yes I said it, lice! Those are easy to fix! Shave the head, use some peanut butter in the gums case or a special shampoo in the lice's case and wall-a, it's all gone!

Ok, so I didn't post that to be depressing, just have a lot of retraining to do, body, mind and spirit. Working on the bigger, no wait the slimmer, better Heather.

So if you read all the way through, I have a little treat for you! PICTURES!!!!!

These first few are from our camping trip to Ray Roberts with the Curriers. We decided we needed to get away one weekend before Lukas next round of chemo

These next few are of Lukas and Ethan's (Currier) first baseball game. We went to the opening night of the GP Airhogs. It was a blast! Theron got to run the bases with all the other kids after the game was over.

Next is Theron reading a book to Lukas one night, man, he is such a GOOD big brother! I'm so proud of how well he's held up these last few months!

And then Theron's first time playing in the rain! He LOVED IT! I wanted to get out there with him, but I was having too much fun taking pics and seeing the look on his face when I actually told him to go play and get wet!

That's all for now, I'll have more pictures soon!

good news, good pics, good background....

2008-07-14T18:09:00.002-05:00

By gollie, I think I have hit the jackpot!

Like my new header and background? Pics were done by the talented Melissa Fullmer... Thanks Melissa for doing these for us, we are almost ready to get some more of the new and improved Lukas who just so happens to be CANCER FREE!!!!!!

Man, I just can't say that enough.... Lukas doesn't have cancer!!!!

Anyway, I promise I really will have pictures up eventually... Just haven't downloaded them yet. But soon! I PROMISE!

For now, I'll leave you with an update, Lukas goes in Friday to get his new port put in, yes he's done with chemo but he is still getting his IVIG and for those of you that don't know, he's been through close to 16 tries and 7 successful IV's in the last 3 weeks, so we very much need a port put back in. Then we don't have another clinic until AUGUST 7th!!! So weird!

So, you can always check back on Lukas caringbridge site for updates or to read his story.

Peace out homies! I'm going to eat some more steak!

Hey, guess what?

2008-07-06T17:42:00.002-05:00

LUKAS DOESN'T HAVE CANCER ANYMORE!!!!!

Yes, you read that right. His latest Bone, CT and MIBG show NO EVIDENCE OF DISEASE!!!!

He is in remission, he is NED!!! WOOOHOOO

We've been celebrating (and doing a lot of catch up sleeping) the last few days. Pictures to follow when I get them uploaded....

TIRED!!!!

2008-06-29T23:28:00.002-05:00

UGH!! It's late and I'm exhausted and I can't sleep. My neck hurts. It always gets way out of whack when I have a hospital stay. It's really bad right now, it's been 7 day and we still have at least 4 more to go....

So basically, this is how my week with Lukas has gone: fevers, not eating, uncomfortable, irritable, er visit, labs, go home, fevers, er visit #2, labs, hospital admit, antibiotics, uncomfortable, irritable, infection confirmed- bacteria and yeast, antibiotics, antifungals, uncomfortable, not eating, labs, CT Scan, Bone Scan, Port removal, Bilateral Bone Marrow Aspiration, morphine, antibiotics, antifungals, feeling better, still not eating, antibiotics, antifungals, feeling better, scans clear, bone marrow clean, I'm feeling better!, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit, antibiotics, antifungals, feeling better, eating a tiny bit......... OH, and throw in 4 Peripheral IV's, about 8 unsuccessful tries at getting a new IV started and now one PICC line later.....

Well, you get the picture! We are done with cancer treatment, we shouldn't have to be here, but that's just how it goes. He got sick when his counts were barely there and it took hold because his little body couldn't fight it. So now we have 8 more days of the antibiotics and antifungals by PICC and then 7 days of oral meds and then we can get a new port put in for the rest of his IVIG infusions so we can get his eyes back to normal.

Even when you are technically "done" with treatments, you are never really done. There is always something that needs to be addressed and treated. Side effects from the cancer or from the therapy meant to kill the cancer will forever haunt us.

I'll have some pics of this week up later. I'm going to try and force myself to sleep.

Need some entertainment? Just push PLAY...

2008-06-18T13:14:00.008-05:00

Lukas favorite things? Walking and a ball... Put them together and you have your evenings entertainment line up.

Still not enough, try watching the new breakout sensation... Theron, the NEW Flashdancer!!!

Hope you enjoyed your evening with this talented showcase!

Dare I say it???

2008-06-12T00:20:00.002-05:00

Today we go in for Lukas last (hopefully) round of chemo! I can hardly believe it. Really, I can't even believe we are at this point. It was almost 7 months ago we were told that Lukas had a 20% chance of beating this and here we are with much better odds and we are stepping back out into the light! Wow!

Here are some pics (you've probably seen them already) of him before diagnosis and during treatment. Kleenex please!

(.....ok, having some technical difficuties......with my brain.... it's fried......pics will be up eventually!)

Pizza and a Purpose

2008-06-05T15:15:00.005-05:00

Saturday, June 28th, from Noon-2pm, my foundation will be holding a Meet and Greet to recruit new committee members. If you read this blog and live in the DFW area, PLEASE come out to learn more about what we are doing, who we are supporting and what's in it for you!

We will be meeting at Pizzaiolo's in Grand Prairie. We'll provide the pizza if you provide your time!

Long Nights

2008-05-26T23:04:00.002-05:00

Sometimes they are nice. I feel like I get some down time, other long nights though, those wonderful old thoughts creep in. The little girl that did radiation with Lukas was done with her treatment in February. She just had emergency surgery Friday because of bleeding on her brain. The culprit? A new NB tumor in her brain. Why does this have to happen? When will it all end? I'll forever be left to wonder what is going on in Lukas little body. Will something new show up on scans? Will he be in full remission forever? What happens if it does come back? Right now it's pretty much a death sentence for NB to come back.

I just don't understand it. I know Lukas chances of full remission are so high, but there is always the possibility for it to come back, no matter how slim it might be for him.

We have to do something about this. We have to let people know babies are DYING more than they are living because of Neuroblastoma! People need to know it's happening. We've got to get more funding for this stupid, hateful, deadly cancer that is killing our babies and toddlers! I'm sorry for all of these sad posts, but this is a reality. This is the world my family lives in now. It's uncertain and full of worry and what-if's. That is what my long nights are made of.

Peepee on the potty!!!

2008-05-20T15:50:00.002-05:00

Ok, so I've wanted to post this for a couple days now but I didn't want to jinx anything.....

THERON IS POTTY TRAINED!!!!!

For the most part. I leave the light on and leave his stool next to the toilet and he goes in there and does his business when he needs to. He doesn't like for me to help. "I do it myself mom." That's what he says... Now we just need to learn how to put the undies back on the right way. Most of the time they end up on backwards and inside out, but I'm not complaining!

Mamaw brought over 12 new pairs of undies for Theron the other night and he's having a blast being a big boy so he can wear them! Thanks Mamaw!

Happy Mother's Day!!

2008-05-11T18:04:00.003-05:00

I get this forwarded to me all the time in my email, but it's how I feel, especially now. Enjoy.

So hit 5 pretty moms on your friends list to let them know they are pretty!

Before I was a Mom -

I never thought about immunizations.
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind and my thoughts.
I slept all night.

Before I was a Mom -

I never held down a screaming child so doctors could do tests, or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a Mom -

I never held a sleeping baby just because I didn't want to put him down!
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom -

I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.

Before I was a Mom -

I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a Mom.

Petition for Childhood Cancer

2008-05-09T23:47:00.002-05:00

Please visit the link, read the story and sign the petition! (Yes, I have already signed, given my two cents and then Lukas story.)

Enough said!

http://www.thepetitionsite.com/1/CureChildhoodCancer

A week of fun and good days!

2008-04-29T23:35:00.007-05:00

Ok, so here are some random pictures.

Lukas looking great!
My sweet little fighter!
John, here are your new ad campaigns!
Lukas loved your new creation! Cheesy bread pizza. (Pizzaiolo's pizza! Delicous)

We had to by the Baby Mederma to put on Lukas scar. It was $20 for .7oz of the stuff!!! This is Lukas after Theron put $15 dollars worth on his head!

So this was one day that Theron was supposed to be taking a nap. His reward for going potty is stickers. The little sneak found a package of Pirates stickers and pulled off all 100 of them and put them all over himself and me. I was laughing to hard to be mad at him!

Charles turned 20 on April 29th. Crazy! He wanted to go to the park before his birthday dinner at Trail Dust and the boys and I were completely fine with that! Suzie and Will came to the park too. Theron loves Suzie (Charles feels a little threatened by this). Any time we say we are going to see Charles, he says "And Suzie!!". So cute! Lukas started moving in on her during dinner... Sorry Charles, my boys are just that cute!

No more tears in Heaven...

2008-04-26T15:34:00.003-05:00

Our little friend John Eric (carepages: johnericbartels) is losing his fight with Neuroblastoma. He made it all the way through his first rounds of treatment (the high risk protocol w/transplant) only to find his cancer had come back in the primary tumor spot. His parents have decided that after trying their last options of experimental chemo and that not working and causing more pain, that they are choosing quality of quantity of life. They are meeting with hospice today and also setting up... I can't even say it.... They are making decisions today that no parent should ever have to make for their child. The children should be the ones planning this for their parents that have lived long and happy lives.

I have never met John Eric or his family, but I'm connected to them now through this stupid, nasty, hateful diseas we call Neuroblastoma. I hate it. I'm heartbroken for the Bartel family. It hurts to have to read that.

I know these aren't the posts you all want to read, but if you can please go to John Eric's carepage and leave his family words of encouragement, or at least pray for peace, understanding and soon comfort.

1st Annual NB Walk...a SUCCESS!!!!

2008-04-24T11:11:00.005-05:00

The first walk, put together by some super loving people and it was HUGE success in my opinion!

They were able to raise just over TWENTY THOUSAND DOLLARS!!!!! $20,000!!!! There were about 250 people there and 18 NB families!

I'm just amazed at how well this first year went and I'm super excited to see how much more we can accomplish next year!

Here's us and our reason to walk!

Here's our little fam having a great time and supporting a GREAT cause!

They had orange wedges out for snacks and by the time we got done walking the 3 miles, Theron was starving! He and Coen pretty much walked the whole way! I was so proud of them!

Don't Cry, BEEEE HAPPY!!!

2008-04-21T13:59:00.004-05:00

Ok, so I've had some, understandably, sad, depressing posts, so I thought today I should post something HAPPY!!!!!!

Lukas is alive, Kurt's job is going well, I'm in a good mood today, Theron is happily watching Cars.....

Life goes on, and it can be happy if we let it.

:) Here are some pics to put a smile on your face!

I LOVE this smile!

See food?

Theron's Monkey Face

Chocolate, one of the only things we can get Lukas to eat...

Theron LOVES to make Lukas happy!

See...

Lukas loves "Bizzy" his music therapist.

Cancer Sucks, bad

2008-04-12T22:56:00.002-05:00

Social isolation, roller coaster emotions, decisions, decisions without enough information, sleepless nights, horrible-terrible thoughts, upset stomachs....

There really isn't anything good about it. Sam's family has gotten bad news about his latest CT scans... The tumor hasn't shrunk since last time and it has actually split in two places, so he faces a very delicate and dangerous surgery. His parents are forced to decide on the surgeon from here, Houston or NY.

We shouldn't have to face decisions like this. We shouldn't have to be told that the tumor isn't responding to treatment and needs to be removed. We shouldn't have to face the "last ditch effort" surgery. Lukas was lucky with his results. Now Sam and his parents need our prayers. They are now in the shoes Kurt and I were in a few weeks back.

My heart hurts so badly for them, I know the pain and nausea we felt and I can't fix it. I can't help them.

We go through this and gain a whole new family. These people, and these sweet kids become so close to us, we are bonded in a way that nothing could ever break and I just want to fix it for them as badly as I want to fix it for Lukas. I told my mom a few weeks ago that I now have a sickening sense of understanding and an empathy I would never wish on anyone else. It comes from having to personally deal with my baby being sick with a cancer that can't be cured (as of yet). We can treat it, we can even make it go away for a while, sometimes for a long while, but in the process we destroy other functions. Our babies are forced to grow up faster than they should. I only halfway joke when I say Theron is 2 going on 20. Our kids, not only the sick ones, loose a piece of their childhood. They loose some of their confidence and feeling of security as they deal with this. I can't even say the word without shuddering.

Cancer. It's taken Lukas sight, it's taken some babies lives. It's relentless. It takes and takes and takes. It's taken Theron's sense of security and it's taken some of my hope, some of my dreams for Lukas, some of my heart.

The Flemings need our hope and faith and prayers and love and support now more than ever as they have to face this unforgiving beast face to face. They have to make the decision to take Sam into surgery and leave Ben behind for however long it takes for Sam to recover. Linda has to leave one baby behind once again as I know all to well. She'll be seperated from Roger again, from her home and sense of comfort. This road is all to familiar to me, to the other families facing NB. It's a lonely road and a long, dark one. There isn't much more than a flicker of light at the end for some of us, and for others, it's only darkness. It's a true test of faith, of our ability to endure to the end, to be able to let go and give it all up to our Heavenly Father. That's the only way we get by each day, the only way we can enjoy the good days and try and endure the bad. We are given miracles, no matter how small or large, but just enough to remind us that we really aren't alone. We are given other families to bond with, to cry with and laugh with, to turn to when we are at our lowest and need that hand to pull us up.

There is nothing good about cancer, but there is something marvelous and wonderful in our babies, they are true blessings, sent to us from Heaven. Maybe we don't get to have them for long, but it sure does make the time we have with them more sweet.

I want so badly for him to see again.

2008-04-08T19:16:00.005-05:00

Dr. Hunt said the most we can hope for now is Lukas seeing shapes and being able to distinguish between light and dark.

Every now and then I catch him looking at things though, so is he seeing more or just the outline of what he's fixed on? I guess we won't know until he can tell us, but when he seems to be looking at me, my heart jumps inside and I don't want that moment to end. I want him to see me, and all my imperfections. I want him to see his daddy and Theron and his family. I want so badly for him to see his nurses and doctors that have fallen in love with him and helped make him better.

Dr. Hunt told me miracles do happen, he's seen them, but right now, medically, Lukas won't have normal vision. Just light, dark and maybe shapes.

That's so hard to hear, I cried a little on the way home, but I am too tired and emotionally drained that my tear factory has gone out of business. But, I guess vision loss is much better than baby loss.

I mean, we just put him through major brain surgery for the chance for his optic nerves to regenerate and get some vision back, is this it? Seriously? This?

I guess I'm just selfish, but I want Lukas to see all the good that this world has to show.

So we should start 3 more days of chemo tomorrow and work on getting rid of the rest of the cancer. I can't even type that word without cringing... ugh...

Want to sleep, but I can't sleep

2008-04-06T23:06:00.003-05:00

So I stay up till midnight or later everynight, only to be back up a couple hours later changing a wet diaper, getting a bottle of "yucky milk" and going back to sleep for another couple hours before my nightly routine starts all over again.

Why stay up so late you might ask? Well, might as well make use of the time I'm going to be awake for anyway....or.... lay in bed and let my thoughts invade for 2-3 hours before I finally cry myself to sleep.

I'm so done. Kurt and I didn't even get to watch Conference this weekend. We were at church, but messing with the boys the whole time. They decided to get cranky and that this weekend of all weekends was the one to really act out on.

I feel bad for Theron. His world is more upside down that I think about, and he's acting out, and he's two and he's trying to potty train, but not really, and he wants to test out his newfound independence, and as a result he is getting into more trouble. So the time we spend with him, we fuss at him to mind, get onto him and he cries. We can't just let him get away with things though, or we'll have a really hard time when this is all over and we get back to some normalcy of life. Right?

I just want the time we do get with him to be happy and productive. And Lukas, yeah, he knows how to through MAJOR fits now. The high pitched squeal, the flailing of arms and legs, the super-tantrums... Jeeze, we are so very much in trouble later on...

Down the road we'll get to hear: "Hey your son is NED (No evidence of disease), but man do you have issues to deal with now! Just look at the attitude problems we created for you!!! Have fun, see you in a couple months for follow up!"

Oh, joy.

Old Faithful

2008-04-04T21:18:00.007-05:00

Oh, my poor car! My driver door handle is broken, I'm about to have to start opening the window and open the door from the outside! The two back windows are duct taped up, because the motors went out and cost more than the car is worth, and that isn't helping anymore and today it started sputtering, as I was going down the highway with two babies inside...

It's been such a good car and it's been paid off for 5 years now! That's been extremely helpful, but besides it starting to die on us, we have completely outgrown it. I have to wrestle the double stroller into the trunk and back out and that eats up about 10-15 minutes out of my day as the boys are whining to get out of the car. I have to have the seats scooted up to an uncomfortable position just to give them leg room and forget about taking anyone anywhere. Poor Charles is like a 10 foot tall bean pole shoved in a 3'x3' box! His knees are in his mouth when he goes anywhere with me, and that's pretty often.

This is my next "dream" car...

I just have to sell my car for $18000 and I'm pretty sure that isn't going to happen.

This will be me in a very short while with a little boy on each hip....

Anyone have a skateboard I can borrow?

Man, if it's not one thing it's another. Sheesh.

Still lurking.....

2008-04-03T22:03:00.002-05:00

Yeah, there are still some spots lighting up on the MIBG scan, so we'll do a couple more rounds of chemo and then do some more scans to see what is going on.

I'm not suprised, actually I am kind of relieved (I know it sounds bad to say) that we aren't just stopping cold turkey on the treatments. I think I personally will feel like we have some "closure" if we actually do at least one more round of chemo and we'll probably do two.

I guess from y'alls perspective, you might think I'm nuts to say that I'm glad we are going to do more chemo. But, like my grandma said tonight, radiation kills what we can see and chemo kills what we can't see, so, take it how you will but I have a small sense of relief.

Oh, and go to my other blog:
www.anewyearofhope.blogspot.com

exciting stuff underway!!!!

Neuroblastoma Article in the Ft. Worth Star Telegram!!

2008-04-01T10:51:00.003-05:00

Making progress. It was a FRONT PAGE article that continued for a whole column on page 9. That's quite a story! Here's the link:

http://www.star-telegram.com/local/story/553255.html

It's a good read.

AND A WALK FOR NEUROBLASTOMA!!!
1st Annual Neuroblastoma Walk for a cure
Please join us for the 1st Annual Neuroblastoma Walk for a Cure!

1st Annual Neuroblastoma Walk for a Cure
In memory of Michael Mancuso an in honor of Kyla Moore

Flyer and Entry Form

Time and Place
Date: Saturday, April 19, 2008
Time: 9:00am - 11:00am
Location: Acme Brick Headquarters
Street: 3101 Bryant Irvin Road South
City/Town: Fort Worth, TX

Contact Info
Phone: (817)347-7038
Description: 3 mile walk to raise awareness and funds for the new Neuroblastoma Program at Cook Children's Medical Center.

A Good Day

2008-03-29T23:21:00.003-05:00

Started out rough, no sleep over the last week and a half hasn't been kind to me and getting Theron and Lukas back on a schedule doesn't happen overnight anymore. So Kurt and I didn't get any sleep but we managed to get cleaned up and out the door by noon to head over to Jake and Becky's house to play games and raise money for Relay... Raised 185.50 by the way!!!!

Lukas played and played and played and crashed for an hour and then got up and played and played and played some more. Lukas discovered a new and now favorite toy at the hospital and Ethan just happend to have one too! That literally kept Lukas busy for HOURS!!!!!! We are buying one ASAP!!!

Theron and Ethan pretty much spent all day outside. Theron was barefoot. Of course. If Theron could live outside and be barefoot all day too, he'd be the happiest kid on the planet. He has been pretty whiny and difficult lately, but I understand why, so that's something on top of no sleep that has been getting to Kurt and I the last couple of days.

We've got a lot of work to do with the boys, but all in all they are such good sports and are really well behaved for their ages.

It was a really good day.

Are we almost done?

2008-03-26T18:31:00.002-05:00

We might just be, so why do I feel so much anxiety about it? Shouldn't I be excited, exhuberant that we are almost done?

I guess lack of sleep and the unknown really are my enemies. The last couple of nights have been hard on Lukas and in turn hard on me. Last night being the worst. He was so anxious and didn't want to be put down in his crib. I would rock him and he would be dead asleep and as soon as his head hit the pillow in his crib he was awake and screaming and clawing to get back in my arms. I know what you are thinking, just a spoiled baby and doesn't like to be put down since he's been held more than not these last 4 months.....

No, that wasn't it. It was like he was terrified of laying in that bed. I just can't even begin to put myself in his position. Can't see so he doesn't know when someone is coming in to poke or prod him... Too many times he's gone to sleep only to wake up with a new scar or more tubes coming out of his body... And even more often than that, he's has countless needle and dressing changes, while he is awake. He continues to amaze me at how well he handles all of this, but last night it was like he was just giving up and dind't want to fight anymore. He just wanted to be held, just wanted to be close to me and didn't want me to let him go. It made my heart hurt so bad to see him that anxious and worn out and scared. I'm supposed to be able to make him feel better but last night I just couldn't.

After hours and hours of rocking him and trying to get him to sleep in his crib, I couldn't keep my eyes open, so Laura came in and took over. She came in on her first shift of the week and told the managers she was going to be Lukas' nurse! We are so lucky to have such great and super loving nurses that love Lukas like he was their own. And I'm blessed that when I can't help him they are there to fill in the gap and help him their way.

I absolutely love our nurses and care partners, all the doctors and even the nutrition staff that know exactly what Lukas likes to eat and can just send meals up without having to ask what to make him. That's quality care. Actually above and beyond quality care. That's just pure love for Lukas to care that much for him.

And not to leave out Theron, he makes Lukas' face light up when he comes in the room. Theron came in today as Amy was unhooking the line so I had to hold Lukas arms down. Of course he was fussing and Theron came in, first thing said "Hi bubba!!! Oh, it's ok bubba, don't cry, it's ok. You're ok bubba." He's two and yet he's so understanding and loving in such a mature way. He amazes me too.

No Convincing Evidence of Metastatic Tumor

2008-03-20T18:23:00.002-05:00

Official pathology report!!!!!

There are some cells that can't be adequately identified, so we will probably finish up with some chemo to "clean up". Dr. Granger brought the official pathology report in just a little bit ago!

She is going to review his case, see what all the past scans showed, what doses of chemo he has had and put together his last protocol!

Wonderful! Lukas absolutely AMAZES me!!!

Thankful and Happy

2008-03-16T16:27:00.006-05:00

Most of you might already know our news. Lukas is a miracle baby. One that didn't read the rule book. He does everything his own way. He was supposed to be intubated for at least the first day and maybe longer. He got to ICU and pulled the tube out and was up and going. Granted he was super drugged up, but still... The surgery only took about 6 hours when they were expecting 10 or more....

My sweet little Lukas. He has a big cut across the top of his head, but he is ALIVE and doing great! This last week has been so emotional. So many worries and unknowns, so many horrible thoughts and concerns. How do we handle it if Lukas doesn't make it, how do we explain that to Theron?

But you know what? From his very first baby blessing, Heavenly Father has said time and time again that Lukas has an important work to do. I don't know what that is, but I think he is definitely doing it right now and he's just getting started.

I am so very, very thankful for everyone that reads this blog, for everyone that has said prayers and continues to say them for Lukas, I'm thankful for my friends and family. For everyone that came to sit for the long hours while Lukas was in surgery. For the food that was brought up, the snacks that were given to us, the hugs and distractions. I'm extremely thankful for those that have taken care of Theron through all of this, giving him as much normalcy as possible. I'm thankful for all the long nights you have spent with us and for letting me cry and not telling me "it will be ok" but just letting me get it all out. I'm really thankful for the washer and dryer! I love them, it's nice to be able to do a LOT of laundry in a few loads. I'm thankful for everyone that has offered to do something even though there hasn't been much to do. I continue to see families struggling with hardly, if not any, family around. I can't imagine doing this on our own. We fought moving back to Texas, but we did it because we knew it was where we needed to be and here we are. We have such a great and loving Heavenly Father. He has such big plans for us and I'm learning, sometimes very slowly, that he knows me and my heart and my needs and I have never been left wanting anything. I have everything I could ever need right now. The best husband in the world, the two most beautiful baby boys and family and friends that will drop everything and bend over backwards to help out. Life doesn't get much better than this.

I love all of you and I know that you will all be rewarded tenfold for everything you do for us!

And the bomb has dropped.....

2008-03-12T23:49:00.004-05:00

After 3 months of all the doctors and surgeons stressing that surgery was (emphasis added) THE LAST OPTION, Lukas now has his surgery scheduled for Friday at noon. Kind of scary when the tumor is a milimeter bigger. To me, it doesn't matter that it's such a small amout, the fact that it's any bigger is horrible! 4 heavy rounds of chemo and 13 very high doses of radiation later and the tumor is bigger.....

So Friday if Kurt and I really feel comfortable (enough) to sign the consents, Lukas will be take back and the Neurosurgeon will go in through the top of his head, down into the frontal lobe and reach the tumor and then the Ear/Nose/Throat-Base of the Skull Surgeon (Very much a specialist) will cut a hole beside his nose and go in through the bone and sinuses to get to the tumor that way and then both will have to work to cut as much of the tumor out as possible. All while staying away from the optic nerves and the two corroted arteries and all of the other very delicate things in the way....

I really must have done something right for Heavenly Father to trust me to make this decision... I have NO IDEA what it could have been.... I don't feel qualified or even worthy to make this decision. Kurt hasn't said much about it. I can't imagine what is going through his head right now.

I guess this right here is the best explanation for why I got married in the temple. There is a very real and very possible chance that Lukas could not make it out of the surgery alive.

I keep saying "I", Kurt and I had to come to terms when Lukas was diagnosed with the very high possibility that if the cancer didn't kill Lukas, the treatments could. We had to be ok with that, we had to accept that possibility. Then we were told his chances were great! Treatments were easy, survival was very high, Lukas would get done with 6 easy rounds of chemo and go home and never look back. Now we are back to having to (and now in less than 48 hours) come to terms with the very grim possibilities this highly aggressive and invasive surgery holds for our baby.

I feel like....well, I really don't know what I feel like. I feel like I'm going to choke on this lump in my throat. I might even black out from the loud ringing in my ears. My eyes are burning as I try and hold back tears. I can't stop this constant trembling of my entire body. My brain is on the highest level of overload and I wouldn't be suprised to see smoke coming out of my ears. (I say that as honestly and seriously as possible)

This just isn't good.

ugh...

2008-03-11T17:38:00.002-05:00

Waiting is one of my least favorite games. Add waiting, then hearing not so good news and then top it off with making decisions based on the not so good news, and there you have it. My absolute, most hated game of all. It's called the "Lukas has cancer and it's not responding to his treatments and isn't doing what it's supposed to" game. Yep, pretty much 100% positive I hate that game.

So Lukas MRI and VEP (visual evoke potential-goggle test) preliminarily showed no change or possibly the tumor is a tiny bit bigger and no response (respectively). 4 rounds of chemo and 13 rounds of radiation later and there isn't much change in the head tumor.

The even more frustrating thing is that we don't know why it's not responding, we've tried everything short of doing surgery (biopsy or full fledged surgery). Now we are at that door. Surgery is pretty much immenent. Kurt and I will be asked to consent to knives going into my baby's head this week. Not so much fun. I'd rather be on a game show where my decision is what briefcase I want to open or how much that can of spam really costs... At least there, a life isn't hanging in the balance and I have the chance to win some money! Is that rude to say that last part? Don't mean for it to be, but that's pretty much where my head is now. Price is Right or brain surgery for my son. Yes, I said brain surgery. It would be brain surgery. I didn't mean to not mention it earlier, but I didn't want to say the words at all. I guess it just can't be avoided now that we are at that cross roads.

Man this sucks! I think that should be the new name of my blog. The "This Sucks" blog.

Another Day at the Park

2008-03-06T19:28:00.003-06:00

Lukas has been in such a good mood the last couple of days and the weather was beautiful yesterday so we met the Curriers at the park and had a nice couple of hours out there. All 3 boys had a great time. (Becky, I have a couple of cute pics of Ethan I'll email you)

Wanted to make the most of Lukas' good mood before we start chemo #5!

Pretty Neat

2008-03-05T13:02:00.004-06:00

I am getting to meet some really amazing people through all of this. We had our LOVE lunch Monday and just with the few parents and grandparents that are there, we are going to be raising the funds to build an entire NB center! Yes there will corporate sponsors and grants and government money, but it takes ordinary people like us to do the leg work and these people I've met are far beyond ordinary.

I thought I knew a lot about Lukas diagnosis and the treatments and drugs he's on, but these parents know far more that just that stuff. They know about new protocols coming out, new drugs that are being tested, what docs at different hospitals know what better and who to call to get second opinions. They know so much and it's parents like that that are changing things for our kids. Asking questions, doing their own research and pushing for alternatives to what is available to us now.

I'm amazed and lucky to know such great people.

There is one mom that I met and I really admire her. She is a single mom with 2 kids. Her youngest is battling NB right now. The mom doesn't really have any family here, they are all out of state, so she's going through all of this on her own. I can't imagine that. But she has a smile on her face and she's so positive and just the love I see in her face is something extraordinary. I can't wait to get to know her more. Like I said, I just really admire her for her strength and endurance through this.

Kurt took this right after Lukas first surgery... He has changed so much.

Harvest

2008-03-03T01:42:00.002-06:00

So Tired..

2008-02-28T18:25:00.002-06:00

We are all just worn out. Theron is sick now. This beautiful (and I use the term lightly) weather is really bothering his asthma. His poor eyes have been so droopy the last couple of days and he can't stop coughing. He keeps saying it's an owie when he coughs or his lungs start to tighten up.

Kurt has had a ton of bids to do the last few days so he's been up late working every night and then he's been sleeping with Theron because Theron hasn't been sleeping well since he's been sick, so he's up all night with him.

Lukas is just worn out period. I don't think I need to explain why.

Me, oh, let me count the reasons...... I have to get up at least every 2 hours to change Lukas diaper since he started IV fluids at night, I don't get much, if any nap when the boys go down because they aren't on the same schedule anymore. I can't sleep anyway without lying in bed for at least an hour each night trying to make sense of all of this then I wake up at 6 or 7 in the morning to unhook Lukas IV and that stirs him so I have to rock him back to sleep. And starting tomorrow I'll have to be back at the hospital at 7:45 am every day until his counts are good enough to start his harvest... That means leaving my house by 7am, which means I have to get up by 6:15 to get ready. Yes, I have to get ready because if I don't get a shower and get going, I'll fall asleep driving and then we'd have a much more serious situation on our hands...

If I had the money, I'd hire a full time nurse that slept during the day and was up with Lukas at night.

I'm so stinkin tired. Eck.

Better Day

2008-02-26T14:18:00.002-06:00

Much better! Lukas actually ate a lot of food. And he didn't have to gag any of it down. We started IV fluids last night. He gets them for 10 hours (pretty much the whole time he sleeps) and I get wet diapers every hour and a half, but it's totally worth it, if he feels this much better the next day!

Theron's asthma has started to really bother him again. He didn't sleep very well at all last night. He sounded like a dying seal with all of his coughing, but the fist thing he wanted to do was ride his bike this morning. That's all he wants to do every day actually!

So stinking cute! Both my boys!

My Big Boy!

2008-02-24T22:11:00.004-06:00

So right now, instead of sleeping, Theron is watching daddy play hockey on the XBox... He keeps yelling "go, go, go!!! Cooooome ooooon!!!! Oh, man!"

He is soo stinkin cute! All boy for sure. And he's talking so well, learning his alphabets and colors and shapes. He was looking at a friends first words book during Sacrament meeting and started naming off the letters in the word "word". Kurt was so excited. He can even draw his O's and C's and is getting close on his W's!!

He's also become VERY independent. The most used words in his vocabulary are "No, mom, I do it" (with an emphasis on I!). He can put his pants on and zip them up and put his shirts on, socks and shoes, jackets... It's amazing how just a couple of years ago he was this tiny eating machine and now he's a big eating machine!

Yes, I think he's pretty good reason to brag!! I love his soooo much! A million times over.

More Tears

2008-02-23T21:03:00.003-06:00

They always seem to come when I'm left alone to my thoughts. My thoughts are easy to push away when I'm busy taking care of the boys or out and about, they are even easy to push away each time we go to the clinic or hospital. I'm busy doing something then. It's when I'm done with my responsibilities and I can't find anything to watch on TV or when I'm desperatly trying to fall asleep at night before the ringing in my ears from the days activities dies down and all I hear is silence. That's when my thoughts haunt me. That's when I realize how bad this all really can be. That's when the hope and all the good statistics seem to leave me and I can't help but face the fact that cancer can kill my baby, his treatments can kill my baby. He is a fighter, but I'm not. Each day gets harder to face. Each change in treatments means more unknowns to me. I'm not a fan of our hurry up and wait lifestyle we have been thrown into. And when Theron, only being two, seems to understand how bad off Lukas really is, I can't hold back the tears. He loves Lukas so much. He wants to be with him all day and rock him and kiss his owies all better and help give him medicines. Hearing Theron say "bubba is sick, bubba has cancer" are the hardest words to hear.

I don't like being left alone with my thoughts.

Watch Out Daddy!!

2008-02-23T16:29:00.004-06:00

A new photographer is in the making!

Theron has learned how to use my digital camera and is starting to get the hang of using it! He is getting pretty good!

Here is a nice sampling of his early work:

(squished blueberry... not a nice juicy bug!)

Home Again

2008-02-22T15:20:00.001-06:00

8 days in the hospital and now we are home again. I love being around the nurses and docs at the hospital, but man, nothing beats being at home.

CNCF

2008-02-12T22:12:00.000-06:00

Midnight

2008-02-12T00:20:00.000-06:00

...and still trying to really be ok that there wasn't any change to his cancer after 3 rounds of chemo and 12 rounds of radtaion...

It sounds good to say "at least there isn't any more cancer growing anywhere" but I'm still trying to convince myself that even though it isn't shrinking, at least it isn't spreading or growing.

He might as well be High Risk, Dr. Granger said his cancer is a very difficult Intermediate Risk.

Stupid Cancer. Cancer Sucks... I'm copywriting that phrase and all the money goes to wiping out this stupid, stupid, mean and vicious, stupid cancer! I HATE CANCER!!!!

UGGGGGGGGGGGHHHHHHHHHHH!!!!!!!!!!11

Bloody Nose

2008-02-09T11:25:00.000-06:00

(Dr. Tomberline) Oh, that ok, just means the radiation is working and the tissue is dying...

(in my head) Oh, ok, then it's not a big deal that my BABY is BLEEDING from his NOSE!!! Now I'm not worried that his BRAIN is leaking out everytime I have to suction out his nose!!!-ok that was a little extreme, I know, but I have a grosely vivid imagination...

(Me) Ok. I guess that means it is working [nervous chuckle]. You're the doctor, if you aren't worried then I won't...

Panic

2008-02-07T14:39:00.000-06:00

I hate radiation and I really hate the steroids Lukas is on, but knowing that it will be done Monday and realizing that we'll know then if it has worked has festered a little, and growing panic.

If it didn't work as well as it needed to, there are really serious side effects that I just caused Lukas to have, and for nothing!

And you know, the most horrible thing is that, after meeting some of the other moms of NB kids, every single one of our kids are completely different. Thier symptoms, their reactions to the meds and drugs, to the treatments, not one of our kids has anything similar other than thier diagnosis of NB.

There isn't a cure for NB, there are treatments to prolong the life of the patients and hope that the cancer doesn't come back. So I'm really a little panicked about all of this. Oh, this is so much to deal with, I just don't have words to express myself properly right now.

I have hope, but I have more panic and nerousness and unsurety more than that.

Steroids Suck

2008-02-04T19:25:00.000-06:00

That pretty much sums it all up...

If you have been "lucky" enough to be around Lukas this last week, you know what I'm talking about. MISERABLE, IRRITABLE, UNCOMFORTABLE, MISERABLE. Did I mention miserable. My poor baby.

On another note, we have discovered Theron likes American Gladiator... He's enthralled right now, we can't tear him away from it!

HAIR!!!!!!

2008-01-28T23:00:00.000-06:00

Lukas is starting to grow hair on his head again!!! Wow, it's so cool! Dark little hairs are springing up all over!!! WOO HOO!!!

Sick...yuck...

2008-01-27T14:50:00.001-06:00

Theron wanted to sleep in the tent with Daddy last night. It was going well until this morning when Kurt and Theron were playing and then Theron got sick everywhere. Poor little guy. I am NOT a throw up person and I had to take care of 6 trips to the bathroom this morning (we didn't make it to the toilet right away either so that includes the 6 changes of clothing, 4 and counting loads of laundry-towels, blankets, clothes, and the 2 showers). My sweet little guy, I know how I feel when I get nauseous, but a little two year old getting sick over and over? I feel so bad for him. I had to call Will this morning because everyone else was at church. He came down and picked Lukas up so he didn't get sick. And Lukas has had a rough 3 days himself. He's been so restless and just not feeling well and for me to not be able to take care of both my babies just plain sucks.

I don't like having sick kids. I don't like not being able to fix them or make them feel better and I especially don't like them both being sick at the same time... There just isn't enough of me to go around for that. I hate feeling helpless and that seems like my new normal feeling these past three months.

I really miss going to church every week. When things are going fine it's hard to wake up and have the motivation to go sometimes, but man, when you don't get to go every week, it's so hard to keep your spirit up and keep your mind focused. I haven't been a regular to Sunday School or Relief Society in the last two years. I'm a frequent flier on the Foyer couch after Sacrament, but I really need Sacrament meeting each week to keep my sanity and my perspective! I need my GP2nd fix every week!

New Blog Header!!!

2008-01-24T15:29:00.000-06:00

Thanks Melissa!!! I LOVE it!!!

These were some of our family pictures Melissa (www.melissafullmer.com) took last summer.

I have wanted a nice header but didn't know how to do it very well, so Melissa made one for us... LOVE IT!!!

Considered Lucky

2008-01-17T13:12:00.000-06:00

Really, I do consider myself lucky now. I guess I should say, I consider Lukas lucky. We have met 2 more kids in the last couple of days that have Neuroblastoma, Stage 4 High Risk. We have also met at least a dozen kids that have Leukemia and have been on years or will be on years of treatments. We met a little girl today that has a brain tumor and has been battling it for 4 years now. Her mom asked how I was doing and was suprised when I said I'm pretty fine with it all, that it was "normal" life for us now. What else is it supposed to be? A pity party all day everyday? I have my crappy, super depressed moments (Monday being one of them) and then I get over it. I can't change any of this and it could be MUCH worse, so it is "normal" now. It is what it is and we just adjust and deal with it.

I guess I can consider myself lucky too. I've got the best friends and family helping me through this. My husband is the best. He knows when to say it's going to be ok and when to just back off and let me cry and be upset. Theron is such an angle, he takes such good care of Lukas. I am pretty lucky.

Theron

2008-01-14T17:11:00.000-06:00

Man he's such a mature little boy. We have started explaining what is going on (to an extent) with Lukas. Theron knows bubba has a boo-boo owie and that he goes to see the doctor a lot. He knows where the hospital is and today we went to see the eye doctor. Theron was so good while the doctors were examining Lukas. He stayed back while they were busy and as soon as they were done with Lukas, Theron brought toys over because "bubba wants to play now".

Yesterday I went to church alone and Theron was such a big boy then too! He sat as still as a two year old could during sacrament and then he went to nursery and was good until the last 20 minutes. He needed his diaper changed and wanted to go back to class with me.

I am so lucky to have such good boys!

Beth's Charity Ball!

2008-01-13T22:22:00.000-06:00

Charity Ball!!!!

My sister Beth is having her Sweet 16th Birthday Party!! She decided to have a Charity Ball, even before we knew Lukas was sick. Now that we know Lukas is sick the focus has changed toward Lukas! She is asking that everyone please just donate instead of bringing her gifts. She is giving ALL the donations to Cook Children's Hospital in Fort Worth. They are an amazing hospital and have taken such good care of Lukas! So please come and have fun and support this great cause.

Friday 1*18*08

7:00 pm till 11:00 pm

Waxahachie

The Church of Jesus Christ of Latter Day Saints Building

2418 Brown St., Waxahachie, TX 75154

There will be dancing and treats!! Come dance with your family or sweet heart!

We are going to be doing this every year now, hopefully it will just get bigger and better and we can start donating to the American Cancer Society as well!!
This is a dress up thing but does not have to be black tie!

Bald baby

2008-01-08T12:21:00.000-06:00

"What a cute bald baby!"

If you only really knew...

Debbie and I were at Boston Market Thursday after clinic and the manager came up and was talking about how cute Lukas was with his bald head and then told us about her niece. She had lost all her blonde hair and it grew back in dark brown. Well, the dreaded question. Did his hair fall out or has is just not grown in.

It is falling out. How old is he? He's a year old. Yes his hair shouldn't be falling out that old. He has cancer. It's the chemo that is making him bald.

I didn't want to have to go that far, it's akward to tell people that. It's even more akward when they start tearing up or crying. I'm dealing with it, I am the one who cries. I don't want strangers crying about it. That just opens up more questions.

Are you ok? Will he be ok? He doesn't even look sick. Will he die? How long until the cancer is gone?

The answer is I don't know. I don't know if I'm ok, don't know if he'll be ok, I know he doesn't look sick, I don't know if he'll die, I don't know when the cancer will go away.

I hope he will be ok, hope is all I have to hold onto. I have faith that he will be ok, whether it's here on Earth with me or in Heaven I don't know yet. He has a really good chance of making it, but and equally good chance that it will come back more aggressive. So, really I don't know. It's all unknowns now.

How long will we be at the hospital? How long will clinics take, how long with the scans take, how long until he starts getting sick from the chemo, how long until he goes into remission? I don't know.

I don't know.

More Random Pictures

2008-01-07T14:41:00.000-06:00

A new year

2007-12-18T13:18:00.000-06:00

More hope. Hope that things keep getting better for Lukas. Hope that Theron keeps growing strong and healthy and that we will one day be able to say that Lukas is healthy too. One day very soon.

It's only been 7 weeks to the day that we got Lukas' diagnosis. Since then we've had 3 hospital stays ranging from 3 weeks to 4 days, 3 rounds of chemo, 2 head CT scans, a chest-abdomen-pelvic CT, a bone scan, an MIBG scan and more labs than I can count on 10 hands. He is such a trooper though. And the nice thing is-our nurses FIGHT over who gets to take care of him! It's a big deal when Lukas comes to the floor! He's making a name for himself in clinic too!

Theron has been such a big boy through all of this too. We tell him when bubba has to go to the doctor and when bubba has to go to the hospital for medicine. He doesn't like when he's away from Lukas and as soon as we get home he looks for him. "Where's bubba?" It's so sweet.

I've got the greatest little boys in the world!

Pictures

2007-12-09T21:18:00.001-06:00

Christmas Thoughts

2007-12-08T15:21:00.000-06:00

I was thinking last night that out of all the times we could have been dealing with our baby having cancer, I'm glad that we are going through this during the holiday season. I've always loved the holidays. They are so special to me. I love having extra time with our friends and family. I love the reasons behind the holidays. I don't like the commercial spin that's been put on Christmas... BUY BUY BUY!!... though. To me Thanksgiving and Christmas have always been a time to really reflect on the things Heavenly Father has blessed us with and to think about the great atoning sacrifice Jesus made for us. That's why I'm glad that, since we are having to go through all of this, we are doing it at this time.

Since the day we went to the hospital (11/18/07) until now, I've been amazed at the overwhelming comfort and peace I've felt talking to the doctors and nurses and seeing Lukas through various proceedures. Yes, I've had some very emotional moments and it's just part of being human, but my faith that Heavenly Father didn't do this to punish me or Kurt or Lukas for that matter brings me an overwhelming sense of peace. I've had a lot of people tell me how amazed they are at how strong I've been through these last 3 weeks. I'm not trying to be strong, because if it was left up to me, I'd be an emotional mess 24/7. I think that I'm just learning more to rely on Heavenly Father and maybe that's what I'm supposed to learn through all of this. It makes me think about him having to watch Jesus go through all of his many trials, last of which was the most agonizing thing none of us will ever fully understand. How did he make it through watching his son endure all of the hardships? I don't think I'll ever know, but I get to see glimpses of it every day. I get to see how much he loved his Only Begotten. I feel so helpless watching Lukas endure the heavy doses of chemicals pumped into his tiny body, the endless pokes and prods and choking down of various drugs. I would take his place in an instant, believe me, I've begged to, but he has to go through this himself. Why? I don't know, maybe I won't ever know, but it's just part of his life. It's not a curse for something he's done wrong. He's only 11 months (well, 12months really) old. He hasn't been able to do anything wrong. He's not capable of it. The way I see it is that, because Heavenly Father only gives us that which we can handle, he must think very highly of Lukas. Ever since Lukas' blessing, we've known he had great things in store for Lukas and now I'm starting to see that. But to go through this during this holiday season just really makes me think about his love for us more than I think I would going through this say in summer. I don't know, maybe I'd think just the same things then too...

Maybe part of it is the overwhelming support we've seen from family and friends, but more than that, from people we don't even know. People that have offered to pray for us, people that have sent gifts or money to a family the've never met, volunteers that come up to the hospital and bring gifts for all the kids, people that sacrifice to feed a whole floor of families dealing with various diseases... Maybe it wouldn't be any different in June as it is now. I just feel like there's more of an air of Heavenly things and more spiritual feelings flowing right now.

Heavenly Father has trusted me with one of his beloved angels. He's given Kurt and Theron and I guardianship of a much loved baby and that makes me feel so special. I feel trusted and loved to know that he trusts us enough to give us this sweet spirit, two sweet spirits really! We just thought we were lucky to have two mild mannered, sweet little boys, but little did we know just how lucky we were. Yes, cancer sucks, it really, really sucks. I hate having to go through this. I hate having to leave Theron with someone other than us because I can't take care of both him and Lukas like I used to. It just sucks, but Heavenly Father trusts me. He trusts Kurt. He's given us these two wonderful boys. Theron with his strength to endure being shuffled back and forth between hospital and family, all while still being a happy little angel and Lukas with the strength to endure cancer and all that comes with it and still able to smile and play. Maybe I am dealing with this pretty well, but I only think that is because I look at it from the perspective I think Heavenly Father would. I don't see it as a punishment for something I've done wrong, I don't see it as a curse and something unfair and is only happening to me. I see it as Heavenly Fathers full trust and faith in me and Kurt to be able to provide everything Lukas and Theron need in order to get through this. I see it as a sign that He knows us and knows our hearts and our intentions. No, niether of us are perfect. We mess up all the time, we make mistakes and don't do the right things sometimes, but we try and he knows that and that is what gives me the courage to go through this. I know that I'm not left on my own. He knows who I am and trusts me and so I know that I can do this.

Counts are up!

2007-12-08T00:00:00.000-06:00

Blood counts are back to normal!! YEA!!

Lukas got an infection while his counts were down so he's been on antibiotics and blood tests came back today negative for any infection, so as long as it stays that way for 72 hours, we'll get to go home before we have to come back up for chemo on the 18th. We are scheduled to just go to the clinic for a long day of chemo and then go home so we are crossing our fingers that we get to do that. I personally don't want to have another hospital stay for a while! I love our nurses, love our doctors, the hospital food isn't so bad, but I'm going stir crazy here. I just want to get out of here and take Lukas with me!

Theron stayed the night with us last night and spent the day up here today. He's so stinking cute! When Lukas was sleeping we would go down to the play room or just walk around and he would say hi and give his signature wave to anyone that passed by us! Such a HAM!!!

Lukas had a really good day today too, so once he was up and going, we went down to the play room again with him and then we went on a wagon ride around the hospital when the boys were tired of being in the play room. I guess I was walking too slow at one point because Theron hoped out of the wagon, pushed my hand off the handle and started pulling Lukas around himself! Guess he showed me!

Overwhelming

2007-11-26T22:06:00.000-06:00

I sit here in room 3111 at Cooks Childrens Hospital in Ft. Worth and I feel like I've just finished medical school. I've wanted to write a blog about all that has happened since last Sunday, but I just can't seem to finish it. This has been one VERY LONG WEEK! Lukas is finishing up his first round of Chemotherapy for Metastatic Neuroblastoma. He has cancer that has spread. He's had one surgery to remove the primary tumor in his adrenal gland, a whole slew of CT scans, MRI's, Bone Scans and more blood work than I've had my entire life...

For someone going in for allergies and a possible sinus infection, coming out with a diagnosis of cancer is just too much. It still feels surreal...

Maybe over the next few weeks I can put together the whole story from start to present. Until then, you can check out the blog set up just for Lukas or the caringpages.com website just for him.

Pictures and updates to come as soon as I can think straight to get them uploaded!