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yesterday was a very special day.

When I asked Jacob, what the best part of his day was a big smile appeared on his little face,
“it was the Star Wars house, and feeding the fishes and feeding the chickens and getting fresh eggs. but the very best was the pinn ball game downstairs
in the Star Wars house”

thank you Shuko for organizing, and a big hug and lots of love and thanks to the amazing family and collectors of Star Wars items, who opened the doors to their home and
gave us an unforgettable experience. and not only this, Jacob got two signed books from the author and collector Gus Lopez.

here are some pictures from the last two weeks and our Star Wars tour.

Sofia

http://www.flickr.com/photos/36414830@N02/sets/72157628177976471/

seattle 652

The last days I would call normal, as normal as it gets. 
I make a cup of tea, sit down by the fireplace and decide to write un update. 
Tears start falling, really, normal? What is that. I do not think anything will ever again become normal.

Jacob has been able to attend school, he is excited, so full of life. the last two evenings he has been reading before bed, small easy books, it makes him so proud, he reads them to me and Simon.

He has been out of school a lot, needs extra tutoring, needs extra support from me. We are behind on reading and homework. In the ideal world I would have the energy to do everything, now everything is an effort. 
We are grateful for the help we get, without it I do not know how we would manage, honestly we wouldn’t. 

Today at school pick up Jacob comes with tears in his eyes, I as him what happened and he says they are having a pajamas party tomorrow and he will miss that as we are going to the hospital. I told him our appointment is in the afternoon so he will go to school. And his face starts glowing, but then he say. “I do not want to go to the hospital any more.”
I feel the same  my love…

Today is the day before a appointment, as always I start feeling the anxiety in my body, so many days without clinic visits, life comes back. At the hospital the illness gets so real, so cold. I can’t hide from it.

These days I can find myself pretending everything is normal, for a few seconds, life is like I imagined it, but only for seconds. Then I see something that wakes me up from my daydream, Jacobs bald head, his pale face, a scar, the box of medicines, the air filters, the sanitizers, my new reality. 
There are moments I know there is a reason or I try to find one, and there are moments of darkness, when I just wish  my little boy was that ordinary 6 year old, with the experiences of life a little boy is supposed to have, and not a cancer patient.

sofia

One week has passed without hospital appointments, it felt like a long time. This morning we were back again, to check if bone marrow had recovered from the last round and if we could start the next one.
I decided before entering the clinic doors that we would be delayed again as every time I start hoping for big numbers I get disappointed. But this time the numbers were good! In one week we went from Anc 60 to 900, I almost cried, me and Jacob hugged and the first thing he said was, mom now I can go to a restaurant!
So now round 5 has started, we are hoping this will be one of the easier ones. 
Tomorrow Jacob has a chemo procedure under anesthesia and then on Wednesday he can go back to school! We will hopefully get a few weeks of a more “normal” life, as normal as it can get.
After todays clinic appointment we went to Trader Joes, such a normal thing to do felt so special. Jacob has not been able to go anywhere for long. And today we did, I was watching them smiling as they were walking around in the store so exited putting groceries in the small kids carts.

Jacob has been doing great the last weeks, just waiting to recover, playing a lot with Simon and being a good big brother to Lucas. 
Also Jacob has been eating well so we will let him be without the nose tube a little longer. 

I participated in my first race last Saturday, the pineapple classic 5 k
 Thank you team, Jacobs Jedis 1,2 and 3! thank you for participating, friends. we met our personal goals but the real goal is not met until we find a cure so that no child, mother, father or sibling will ever need to go trough this pain.
Thank you for your donation in our battle to destroy cancer.
Donations can be made until dec 2nd, and don’t forget to register matching gifts.

For me and David this last days have been emotionally hard. 

I ask you to pray for
us to stay strong in this battle
&
for  the Blunck family who just lost their 4 year old daughter 

Immune system is still zero. We will wait one more week and give it another try. Bone marrow is slowly recovering and have started to produce platelets and red blood cells. Jacob took medicine orally today for the first time since he voluntarily pulled out his nose tube the other day, he mixed it with ice cream and after a few attempts he finally accepted and got his antibiotics. Sofia and I are right now out on a date enjoying good music and drinks downtown Bellevue, Joey’s. Cousin Thomas who is in town is babysitter and our hero. :-) / D + S = forever

Numbers are still low, as expected as we are in recovery. Now we are just waiting so that we can start the next phase and so that Jacob can go back to school for some time.

After the blood transfusion he had this last Saturday he has been even more energic, jumping and playing kinect. Because of his low immune system we could not visit Microsoft to trick or treat or have our traditional halloween dinner with our friends, but at least the boys went trick or treating in our friends neighborhood, even if that meant lots os hand sanitizers and me hoping they would not catch a cold…I want to protect but we can not stop living.
Now we do not have any clinic visits until Monday, as long as Jacob does not get any fevers, pain, nosebleeds or bruises.

I spent last weekend in Portland, it was great to get a break from everything.

Lucas is getting more mobile every day and if I leave him out of my sight I might find him in the strangest places, like in the pantry eating cookies. So now the gates are up, bathroom doors have to be closed and all small toys in a safe place.

Today Jacob was brave and pulled out his nose tube, this coming phase should be a little bit easier and he should be able to eat and drink. Also the nose tube needed to be replaced as it was leaking, so this is a good time to take a break from it. So now our little hero looks almost like a little normal boy, one without hair…

/sofia

http://www.flickr.com/photos/36414830@N02/sets/72157627939131251/

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