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 :-)

Tuesday, January 26, 2010

First OT Appt.

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

live life to the fullest

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

4 yr old

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 to do paperwork today and I am thinking about a letter that I received from the hospital that treats Sven for his Leukemia. The letter stated that we owed $19,000.00 for medical treatment, what was so great was that at the top of the letter it said: THIS IS NOT A BILL. Ok then what is it A WARNING. Was that statement supposed to make us feel no biggee we will send the bill next week. LOL.


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!

New week

OK, with the crappy week of clinic, increased dosage chemo, spinal tap week over Sven and I both woke up with smiles on our faces. He is so my little warrior and doesn’t seem to even remember the mess of what last week was like. We are having a quiet day at home, well quiet meaning no appointments. I just arranged for him to have a babysitter on Friday night so that Christian and I can go have dinner or at least a glass of wine together, I really miss him and it's funny that I say that because we are in the same house all night. Sven really takes over Christian at night he is making the move from Mama to Papa he runs to Christian as soon as the door opens and has his plans for the night all set. I guess that is a happy balance I am the rock when it is medicine, procedure, doctor time and then Christian is like the Play therapist at night. It's all good we have a pretty good set-up just have to figure in those few hours a week of alone time for me and Christian :-). We are also looking forward to a fund raiser for Sven's buddy from the clinic, same cancer and just about same age us cancer mom's have to support each other!

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

A Friend

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".

Just thinking...

I will start with, some days I am extremely angry, some days I can cope and other days I am an absolute mess and that's just me imagine what Sven's days are like! For the past 9 months since Sven was diagnosed with Leukemia I would say I am still holding my breath. Some days all together I don't even remember (or at least choose not to).

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!"