Thursday, November 19, 2009

Two Years

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.

Friday, September 11, 2009

Holy Tomatoes!

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!!

Tuesday, July 21, 2009

Whew!

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......

Wednesday, May 13, 2009

It's been a while old friend...

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!

Thursday, April 2, 2009

2nd Annual NB Walk for a Cure

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....

video

Friday, March 20, 2009

Pics and Videos

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.

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!


Thursday, March 19, 2009

Blah...

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? :(

Tuesday, March 17, 2009

Lukas' new quilt

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.




Wednesday, February 25, 2009

Vacation!!!

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 :)

Thursday, February 12, 2009

Out with the old, in with the new

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.

Tuesday, January 20, 2009

Random babblings...

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!