Go DEUTSCHLAND Go!
Monday, July 5, 2010
It has been awhile, and an even longer while that I have been able to organize some thoughts and put them to keyboard for my blog. Time and days and months have been whizzing by me, so instead of a specific event or thought or worry... on my mind is time, as I sit here behind me sleeps a growing boy, I am amazed at the length of him when I watch him sleeping from head to toe when did he grow that long? I still see the face of my little baby boy but it it is now surrounded by the big boy he is becoming, his hair is all grown in and his cheeks are rosy from playing in the sun. I don't ever dare to get comfortable in the good times because I can't afford breaking my heart again but OH MY GOD do I love to let cancer lurk in the background of my thoughts and let the smiles and laughter be first and foremost in my mind! We are having a fun-filled summer start and I love the 5 year old mind that does not even remember the mess of last summer!
Tuesday, June 15, 2010
Jesus: If you have never met Sven I will have to tell you first that he is a really bright little boy and is truly gifted sometimes you have to look twice to remember he is 5, but I love his 5 year old mind when it is being just 5. We spent a week at the beach this past week for a family vacation, as we walked down the beach we came upon a sand sculpture of Jesus and the the hand of God, Sven goes to catholic school so he hears all about Jesus and we read him all the Christmas stories about Jesus, he even was in his school performance and played an animal in the manger, as we stopped to look at the sculpture Sven asked me "who is that Mama" I replied that is was Jesus, he thought a minute, looked at Christian and I and said "FINALLY.... I got to see him".
Violence: Sven started playing video games in his cancer clinic to zone out during procedures and chemo treatments. We did not have a PlayStation, Wii or DSI for him at home because we thought he would fall into it being that we spent a lot of time home while he was not feeling well. My Mom bought him a PlayStation, that's what Grandparents do ;-), he loves spider man and my Mom bought him the video game, he is advanced so he can play it well even though it is for 10yrs. and up. I asked him one day after playing it with him to not play it anymore and choose another game, he asked me why and I explained it was too violent, he asked me what violent was I could not explain it properly and was fumbling for the words, not wanting to be patient for my loss of explanation he said "Oh, it's one of those words I can only say at home".
Parents ages: In school for Mother's Day Sven's teacher asked questions about his Mother and Sven would answer them and they recorded it in a book to give as a gift. I opened it and it asked my eye color, hair color and how old I was, Sven told his teacher I was 16 years old. I love him so much. Today I received the book of questions and answers about his Papa, in Sven's mind his Papa has white hair and is 20 years old, the question on what would make his Papa happy, Sven wrote, giving him an umbrella on a rainy day, he also told his teacher the best thing his Papa did for him was teach him how to fly an airplane.
5 years ago I dreamed of the big dream, I had the big important career, the husband with a big important career, a big healthy bank account, a big dream house and big dreams of having all that forever.. living the big life of dreams! Now after 5 years and a cancer diagnosis I dream of the Big DREAM again, a big meaningless part time- keep my mind fresh job, a big decrease in house payments, a big cancer remission and a big move to a little house by the big ocean near Cape Cod watching and laughing big laughs with Sven and Christian. Amazing how things change and dreams change with them. I would not trade a minute of it, when I look at Sven now I know I am living the Big Dream and cannot ask for, dream of, wish for, pray for anything bigger and dreamier than the life I have with our little family!
Friday, May 7, 2010
The Chosen Mothers
Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother’s of children with life threatening illnesses are chosen?
Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and
deliberation. As He observes, He instructs His angels to make notes in a giant ledger…….
“Foppiano, Christine, son, patron saint Christopher” Forrest, Marjorie, daughter, patron saint Cecilia”.”
Finally, He passes a name to an angel and says, “Give her a child with cancer.” The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God, “Could I give a child with cancer a mother who does not know laughter? That would be cruel.” “But, does she have patience?” asks the angel,
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”
“I watched her today,” said God. “She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I’m going to give her has it’s own world. She has to make it live in her world and that’s not going to be easy.”
“But Lord, I don’t think she believes in you,” said the angel. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see….ignorance, cruelty, prejudice….and allow her to rise above them.”
“And what about her patron saint” asks the angel, his pen poised in mid-air.
God smiles and says…”A mirror will suffice.”
Monday, April 26, 2010
Thursday, April 15, 2010
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
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.
Monday, April 12, 2010
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
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!
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
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!
Wednesday, March 24, 2010
Friday, March 19, 2010
Last night we had a family walk after dinner, we leave all the dishes on the table and put on our sneakers and head out for some excercise. We are trying to build up muscle and stamina for Sven as he is not doing well in his physical therepy. The theme was real life Mario Kart, it is a video game that he was introduced to when he was first diagnosed, they use it as a tool at his cancer center to keep him occupied while they do chemo our tubies (access his port). We walked along the sidewalks and every crack, electrical cover, mailbox was a feature in the racing game like bananna peels that make you crash, rainbow cubes that give you super speed and spikey turtles that crash your kart, we laughed the whole walk and Sven did not mention once that his legs hurt or that he was tired or needed to be carried. Hmmm I wonder if it will also work when I head to the gym today and get on that treadmill...oh what I would pay to be 5 again!
Friday, March 12, 2010
Thursday, March 11, 2010
We have a 5 year old in the house, wow 5! I said to Christian this morning hmmm we have only had him for 5 years, he is sooo new. Well our ice cream cake in bed went over well and our lil angel was watching over us...Sven woke up with a fever this morning and that usually means trip to the ER. I prayed hard and the thermom gave me a happy 99.7 which keeps us home. I am not sure my heart could have taken Birthday Boy at the ER or clinic. We are keeping a close eye on him but he is cooling down and running all over the house with his brand new batman wings and demanding Taco's for his Birthday dinner. We had a happy day and Sven even told his OT that it was the best day in his whole life. WE LOVE SVEN! And a special thanks to our gaurdian angel that we know is with him night and day, day in and day out.
Wednesday, March 10, 2010
IT'S COMING ON THE BIG DAY! Sven will be 5 on Thursday 3/11. Whooooo hoooo. My little guy has wanted to be five since he was 2 and I remember the big croc tears at his 2nd birthday party when we told him he was 2 he cried and said but he wanted to be 5. Christian and I will wake him up in the morning with ice cream cake and balloons in bed, sounds exactly what as parents we should not do but considering the rough year he has had to endure we would fly in on unicorns if he wished it. We will then let him pick out as many dunkin donuts munchkins he wants to bring to school for his classmates to celebrate his birthday with him. I then told him that he could play on the school playground for as long as he likes. Because of the big boy bullying he has a new found fear of playing by himself at the school yard but I also let him be fully aware that both Papa and Mama will pick him up from school and will both be there to watch him on the playground and the best part of my night....letting Sven know that his Papa would be bigger than the big boys on the playground and that with that he could run, play laugh all knowing that he had the biggest boy on the playground (Papa) watching over him!!!
Monday, March 8, 2010
Today Sven and I officially take our day off. No school, no clinic, no therapy, no errands! Just him and I having our day. We are on the last day of steriods so I am running around with 'Im hungry Mama' commands. But the best of the day so far...Sven told me it was my special day, this he explained meant that I could play anything I wanted for as long as I wanted. What a great kid :-) I chose Chutes and Ladders and hmmm guess who won, Sven! He was one sqaure away from winning and I told him to win he needed to spin and land on the number 1...he did and it did!
Thursday, March 4, 2010
Can anyone answer this? When does the hurting I feel go away? I just had to report the bullying of Sven at his school to his principal and again I am overwhelmed with sadness, the connection I have to my Sven is so strong and I am left to think that maybe the hurting won't go away and that incidents like the bullying will only intensify my feelings of sadness it's like a never healing wound, or at least when it starts to heal a situation like what happened at school opens it up. When I brought Sven to class today his teacher who was witness to my breakdown on Tuesday with the bullying did not say a word, I can't say that she should have said something, but the slightest bit of understanding is not present and it gives me the idea that Sven, Christian and I are all alone, only other parents fighting this cancer can understand and those parents are not in our everyday world to give us a wink and let us know they get it, they understand, they too still wake up in the night and check to see if their kids are breathing. New World Rule: Kids that have cancer and fight it daily = extra special kids that should be loved more and worshipped...by EVERYONE!
Tuesday, March 2, 2010
Okay, I just almost mauled a Mom at Sven's school playground...me = super sensitive today. Boys teasing Sven about his hair and trying to pull his hat off. I thought about my reaction to the boys Mom, was I over-reacting, NO! Does the other boy have to know Sven has Cancer and that is why his hair is different, No! I would think that compassion is born with us, it does not have to be a rule, 'do not tease kids with cancer' Sven has seen at the clinic, all kinds of kids with hair, without hair, with tubes in their noses, shunts in their heads, not once has he looked at them any differently then he looks at his NORMAL classmates, nothing we have taught, this is why I cannot accept a half apology that they do not understand that Sven has cancer and that is why the act itself was not that bad. THINK PEOPLE, live a day in our life. Has he not been through enough. Maybe if Sven did not have cancer I myself would not understand, and I hope that I would have still been compassionate enough to see the pain that people have to go through while dealing with this. Grrrrr.
Tuesday, February 23, 2010
Today has been a weepy day, I am not sure why today. Driving in the car my eyes just filled with tears and it is not the poor me tears it is just the saddness that overwhelms not caring the day or time. I am sad that this has ever become part of our life, I am sad that my Sven and all the other little kids we have met on this journey have seen & felt such pain. Talking with another cancer Mom I mentioned that even when we are 60 yrs. old and all this chemo is behind us and our kids are grown and living normal healthy lives we will be driving or sitting or shopping and all of a sudden be overwhelmed by the saddness that we shared and still cry, it is what we have seen and what we have had to stand by and watch or little ones go through. It is the connection that we have to our children and it is a reminder that we are a small group and that we know that we are the lucky ones whose kids have made it through but we don't dare take it for granted we live with the miserable pain of knowing it can happen again. I am lucky to have Sven in my arms each and everyday!!
Monday, February 1, 2010
This post is especially for Sven's tante (aunt) Katrin, she will most likely besides Sven and I be the only other one to understand and laugh as I did.
I was explaining to Sven that he will soon have another new cousin, that Papa's sister was having a baby girl soon and close to his birthday, usually Sven gets excited about new cousins but he has a history with his cousin Felix from Germany, after some thinking from Sven he said "oh no Mama, I don't have enough toys for another German cousin to eat.... I tried to explain Katrin :-) but what it comes down to is that Sven is happy that it will be a girl cousin because girl cousins from Germany will only want to eat girl toys and he is a boy so he does not have girl toys :-). I think when the boys are together again Felix will have grown so much that I can introduce him using his middle name and the whole saga will be over ;-)
Tuesday, January 26, 2010
I am at my computer while Sven is in the other roon having his first appointment with the Occupational therapist. Since the chemo, mostly the vincristine he has a detereoration of his fine motor skills. The therapy will help him advance with his writing and hopefully strengthen some weakened muscles. Sven will have this therapy 2x per week, I guess until his chemo ends in 2013.
Wednesday, January 20, 2010
Today we had clinic that is a cancer mom term for an appointment at the cancer center to get Sven's blood levels and chemo. Sven had a port surgically inserted in his chest after his leukemia diagnosis, this allows the doctors and nurses to administer his chemo directly into his main artery and allows them to quickly and safely draw blood (this is done weekly or more) to check that he has enough platelets and enough infection fighting blood cells also to make sure that the cancer is not taking over this all can be seen with the blood tests they run. There are times when blood levels are low and he will need a transfusion and this sort of jump starts the healthy production of blood cells and allows him to stay on his chemo protocol, when the blood levels are too low the chemo schedule is stopped until the body is strong enough again to tolerate the chemotherapy. So the end result Sven's numbers were good and that means he gets his ugly methotrexate dose tonight! Ummm what a reward!
Sunday, January 17, 2010
Good day on Saturday, met one of Sven's clinic buddies and played in some fresh air. I can't describe the pleasure I feel just watching these kids run and smile they go through so much in a week but are able to move on so quickly, a trait I wish I had, not to get stuck in the past, not to let crappy weeks take over the whole month, not worry about the next crappy week. I believe that might be a new project for me to concentrate on, now I know where that saying comes from, live each day to the fullest. It comes from these little warriors, my little warrior that wakes up each day not expecting anything but a perfect day!
Thursday, January 14, 2010
I underestimate Sven’s ability to understand what is going on in his body. This morning wake up time was not so nice, part of Sven's chemotherapy protocol involves a drug called vincristine and this weakens his muscles and gives him bone pain. Today he has school (he goes to Prince of Peace Catholic school 2x per week) so after I woke him up he slowly went to the couch and just laid down, and this is not the usual Sven he is usually with such enthusiasm telling me about a super hero he was dreaming about, well none of that, I asked him what was up and he said that his legs are hurting today and they did not want to move, I helped him and asked him if he still wanted to go to school and the trooper he is he said "yeah, Mama it's a school day" after getting dressed and cleaned he asked me if his legs hurt because of the cancer in his body, this always stops me short. They really do feel what is going on in their little bodies they understand that the chemo is affecting them they understand cancer and it pisses me off that a 4 yr. old even knows what cancer is. I always wanted him to have that perfect child life where everything is beautiful and fresh and everyone is caring and loving and that in these early years life is just a perfect thing, but he knows otherwise he knows he has cancer and he knows not everyone has it and he knows he is different and he knows that cancer hurts and he knows that it worries me. Just as I have said to him in the past cancer sucks. Grrrrr cancer! I think today I will need to cry for a bit.
Wednesday, January 13, 2010
Have you ever been woken up at 5 am by a 3 or 4yr. old telling you to make hotdogs? That is one of the adventures of a cancer mom, steriod months, then steriod weeks where you can't seem to keep enough salty foods in the house, but of-course you get up and make that hotdog because you know next month or next week they won't be eating again!
And BTW try and tell a 4 year old boy on steriods NO!
Tuesday, January 12, 2010
We had a blast at the Professional Bull Riders Event at MSG in NYC on Friday Jan. 8. Thank you to Lauren @ SB for having Believe in Tomorrow Children’s Foundation contact us. They arranged for our tickets and the behind the scenes tour for Sven. The Pro Bull Riders that we met are amazing people, Mike Lee & Wiley Peterson they gave so much of their time for Sven and he cheered for them all the way!!!!
I always end up with tears in my eyes when I think about cancer, I really understand what sadness feels like, I can't say that I ever experienced anything so truly sad before in my life. And the tears don't just come for Sven they come for every time I hear the word cancer, every time I avoid looking into the rooms on 11 South (pediatric cancer wing) "I truly get it now" and there is no comfort in words except when another cancer Mom asks about how you are. Don't wonder if I am always so down and don't utter the words 'be positive' to me, I am aware of the gifts I have everyday like just watching Sven walk, watching the other kids at the cancer center say goodbye after their exams (they are going home, that's good). Just as much as I smile at the wonders everyday I see in all these little kids I have to recognize the wickedness of cancer and it still brings me to tears, STILL.
Sunday, January 10, 2010
If you ever get a chance to speak to Sven you will notice that he refers to everyone he ever meets to as "a friend" he is a love and he has a million friends. A mom of one of these friends just txt'd, Sven's friend is in the ER (holy crap!) I hate these momments because in some way all these lil warriors are connected and at one time or the other you have been in the ER and it sucks you know the feeling, you know the anxiety you know the complete sense of helplessness. I cheer for them all because in a sense you are cheering for your little boy who has cancer, let them all be ok and you then can smile and say "ok Sven will be fine too".
I saw a picture of Sven from about a month ago when he had no hair and no eyebrow hair, taken at a tough point in his chemo treatment, I was shocked I don't remember him looking like that, in a weird way our mind has a way of protecting us from seeing truly sad happenings to ones we love soooo much! It is almost like my brain said "whoa she can't handle that, flash an old image!"