Christian and I (Sarah) are the parents of a 4 yr. old, beautiful, sweet boy named Sven who was diagnosed with Leukemia on 4.19.09. Immediately we started chemotherepy treatment for Sven with the Pediatric Oncology Center @ Stony Brook University Hospital on Long Island, NY. I will outline some highs and lows and most of all type some frustrations away :-)

Thursday, April 29, 2010

Monday, April 26, 2010

NINTENDO Wii

I am going to put our name in a hat :-) over at One Savvy Mom!, she is giving away a NINTENDO Wii. I think she does such great giveaway's and reviews.Wish us luck!!

Sunday, April 25, 2010

My fave's...

I was downloading all my pictures from my iPhone and found these three that really made me smile. This week has marked a year since Sven's cancer diagnosis, in some ways I feel like the year went so fast and then on other days I feel crippled at the way time seems to have stopped and this whole mess is still circling around us, I have stopped trying to figure it out.

I chose these images because the first two had been taken before his diagnosis and no matter his looks today, these are still the images I see daily, the smiley Sven, making me laugh, making me laugh so hard I had to pee. Not to say I don't see him for who he is today, I do, I just think maybe I have seen everything black and white and these color pictures of Sven just remind me of how vibrant his personality is and a reminder of our life will go back to vibrant color one day when all this has been left behind and we have kicked cancer's but!

Thursday, April 15, 2010

700

Ughhhh! Yesterday was clinic day and though Sven was off (his behavior & mood off) this past week, you know acting sort of 5, he usually acts so cute and sweet like a little man all manners and politeness, and random people comment to us that he is so well behaved and perfect, so I thought hey he is just being a normal 5 year old and to us that is a good thing except my nerves are a bit frayed from the amount of times I am saying NO Sven! So ya think I could have figured it all out, the doctor called last night and said Sven's blood counts dropped to 700 (WTF&*%$!) which means he is on the border of being neutropenic (worse than a suppressed immune system, basically it means no immunity). So today I will make the house sterile and put away all fluffy bacteria holding things and keep people away, I will also have to explain to Sven that we will have to be extra careful and keep our activities limited to be safe! I am praying that we get a safe passage through this low count time and rebound by next week! I think I will need to cry today, and also cancer just kicked me in the butt and reminded me that I can't let me gaurd down! Fight Sven fight!

Tuesday, April 13, 2010

An Award...

Jennifer over at Life with the Lebedas passed an award to me, thanks Jennifer! I started this blog mainly because I wanted an outlet for my sadness and my inability to function with day to day life after Sven's cancer diagnosis. I was in a severe funk and just cried all day long. I started writing because I could not use my voice to get out all the feelings, all the fear, all the sadness. Since I have started to see some light, days have gotten better, I get up everyday ;-), I wear pants with buttons and zippers, I open all the blinds to let the sun in and so forth. It is getting better :-).

So the rules of the award are to share 10 honest things about me and to pass the award on to 10 other bloggers, so here it goes...

10 Honest things...

1. My heart is still broken and I am unsure of it ever healing.
2. I would trade& give anything for Sven not to have cancer.
3. I still wake up at night to check if Sven is breathing.
4. I cry when I drive in the car alone, I won't cry in front of Sven.
5. I pretend to be strong during all cancer related appointments.
6. I clench my jaw and grind my teeth when I sleep because I can't manage stress properly.
7. I can't look in the rooms on the pediatric oncology wing at the hospital.
8. Cancer scares the Heck out of me.
9. I have anxiety over Sven's daily medication, it is a constant reminder that Sven has cancer.
10. I pretend that I am not so affected by Cancer to my husband so he won't be as scared as I am.

10 Bloggers...


Monday, April 12, 2010

I love him...

Sven has a scheduled bedtime of 8pm everynight, it is usually no problem, but now as he turned 5 and the trauma on the BIG C diagnosis is fading we asked that he try and now sleep in his bed, in his room. After Papa (Christian, my husband) tried his best I got the look that I needed to get Sven to sleep by sitting by him in his bed, and rubbing his back. After he did not go nicely into sleepmode I asked him if he was ok, he thought a minute and asked me if I locked all the doors and windows, Of course I did, I told him that he had nothing to worry about. He then told me that the HULK could bust through all locked doors and windows and even walls my response to my ever challenging, has all the answers, smarty pants...THE HULK DOES NOT HAVE ANY SHOES ON HIS FEET HOW IS HE GOING TO GET TO OUR HOUSE? That did it, he had no exuse anymore, he went nicely into sleepmode :-)

Thursday, April 8, 2010

1 in 10,000

Ok so 1 in 10,000 shot of Sven getting cancer! I approach my anxiety dealing with cancer with humor (well I try it gets easier as the time passes) so when me and the other cancer mom's are sitting around the clinic I try and keep a smile and one of my lines is "yeah with these odds ya think I could have hit lotto, No I get the cancer jackpot"  and I feel that is what the whole of 2009 was one big crappy lottery with us winning jackpot after jackpot, for instance, not only was Sven on the most difficult month of his chemo protocol HE GOT THE SWINE FLU on top of it! C'MON are ya kidding?

So with that all behind us I am happy to report that I actually won something cool today, an organic tee shirt for Sven from a  teewit.com (they have tee's with the best saying's ever!) giveaway at Savvy Coupon Mommy! I called my husband at his office and was so excited he was like Sarah it's a tee shirt.... but after further explanation he got it too, our luck is changing we are on an upswing, we are really good people who should be having a really good life, it's a good omen, 2010 is going to be a good year, we will laugh with Sven, enjoy our family and cry for fun and happy things, we will finally be able to see that we are sooo fortunate to have eachother everyday! We will worry just a little less of what is lurking around the corner, we will kick cancer's butt! Whooo hoo we won something good!

An Ugly Monday

I know it's Thursday but had to put some days between what went down on Monday. First I fretted about Monday since last Wednesday. Sven was scheduled for an MRI because he is having bone pain and they want to make sure that the chemo is not causing damage to the the bones. Not only was I worried about the results of the MRI I was more anxious on how Sven was going to take it, he had to be sedated because they needed a contrast which means he is in the machine for 1 1/2 hrs. I tried to talk him through it the night before and that it would be ok to cry, it would be ok to be scared and that I would be right beside him to help him be as brave as he could. Well I broke down, screamed at the receptionist and had a full blown breakdown, uncontrolable sobbing and all, I just saw the terror in Sven's eyes as they tried to get him sedated, it brought me back to the initial diagnosis day when they had to hold him down to start IV's at these times I swear I can feel his terror and I have to stand by and watch it all, thank GOD he recovers more quickly than I do, and as usual Sven had me in giggles all the way home talking about that huge donut machine and how he does not think he will want a donut ever again. God, I love him! Hoorah Sven! Keep fighting!

Thursday, April 1, 2010

Leg & Hip Bones

We are used to having all sorts of bones in the house. My husband is often in an operating room or working with some surgeon here or there using some new breakthrough technology in medical devices. He often has to travel with bones and I wonder what they must think when his luggage goes through the scanner, needless to say he often has to go through the special security line ;). One of his leg and hip bones (manufactured not a real human leg bone of-course) ended up left in the bedroom on the couch, our little Sven refused to sleep with the bones in the room so I carried them and placed them on the kitchen table. They stayed there for two days on the second day Sven's occupational therapist came for his appointment Sven and I thought nothing of the bones. At the end of the session I walked her to the door she asked where my husband was and I replied honestly he is in Belgium working he will be traveling for awhile as soon as I said goodbye and turned around I immediately saw the bones on the kitchen table and realized that she had the entire session right beside the bones and did not ask me once about them. I moved the bones and made a mental note not to have them laying around, I think she still comes just to see if my husband is still alive!