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Dear friends, family and close ones!

As you might already know I have joined the biking team Rynkeby where I will bike and raise money to children with cancer. I will train hard and do lots of fundraising, and next year I will bike all the way from Sweden, Malmö to France, Paris.. I need your support to raise the initial funds needed for me to be allowed to join the team. I need myself to raise $4000 to buy the Rynkeby bike and all the equipment, clothes, etc. Please make a donation to my son’s PayPal account on www.jacobschaub.com (the big red button to the right).

Also if your employer or another company you know of is interested in sponsoring the Rynkeby team (100% goes to the Swedish Childhood Cancer association barncancerfonden) there is a possibility to get the company name on our shirts, banners etc with high visibility during the year we race on the roads and participate in all the public fundraising events. I will have more information about the company sponsoring soon but already now please talk to whomever you need to talk to or at least start the thought process and be ready when I reach out to you..

Some of you have already made a donation and for that I say THANK YOU together we will beat this ugly thing called cancer so one day children won’t have to suffer and die and the world will be a better place for all of us.

Stay tuned and remember it’s still September the international childhood cancer awareness month and you have a chance to help.

Today marks the start of the international childhood cancer month.. and I got the best news: Team Rynkeby called me letting me know I made it into the 2015 biking team!! they only accepted 10% of all applicants and I was one of the lucky ones.. Now starts a crazy year with biking practices, workouts and some serious fundraising.. and next year I will bike from Sweden to France (how crazy isn’t that) in the fight against childhood cancer!!

Being part of something bigger than yourself is a fantastic feeling!! I will need your support, 1. For me to be allowed to participate I need myself to raise 4000$ to buy the racer and equipment etc.. If you want to help me reach this initial goal please go to Jacobs web page www.jacobschaub.com and press the giant red donate button to make a PayPal donation, make sure to write your name and “Rynkeby”. Also if your employer has a matching program make sure to register your donation with them to double the amount. 2. This is the important part, to be able to make a difference in the fight against childhood cancer we in the Rynkeby team need to find companies that is willing to sponsor us to reach the larger goal which is to raise millions to the Swedish childhood cancer association (barncancerfonden). Companies will get their logo on the teams racing clothes and lots of visibility during the year we bike and participate in various events. The exact amounts to qualify getting your company logo onto our shirts (and pants) I don’t know yet but reach out to me and we will figure out those details. If you think your employer is interested to know more or if you know of another company that could be interested please let me know and we can get the ball rolling.

Here is a video of last year’s race: http://youtu.be/j1jh10dacrU

and to give you some more motivation here is my little warrior: http://youtu.be/-i2MLPj2Fvc

Together we can do this!

Fight cancer!

I can hear you laugh, jump and play upstairs with your brothers while I prepare tonights dinner

you run down when I call you and you eat with a good apetite
3 years ago you were too tired to play, you did not want to eat
your bones started to show under your skin, your belly was swollen and your joints were hurting as
cancer had taken over your body, running in your veins, growing in your marrow
poisonous and deadly
I’m always a bit afraid of this date, as it is such a mark in my soul
afraid of how the day will turn out, where my feelings will go
because it is impossible to not go there
to travel in time
it’s been 3 years
a journey I could never imagine or expect
in the midst of it I was wondering how to survive sometimes I still do
it is not over but it’s not that intense anymore
we are learning to live a more normal life again
but we are marked and we are changed
we have fought together as a family, some days as a team other days more to keep the team together
but we also had our own journeys, a personal one
I think of my kids journey and how this experience has tought them and formed them and what memories they will have
I wonder what it will look like in they future
I think of what David has gone through
of how we all have changed in different ways
but I can only talk about my own journey
emotionally overwhelming
physically challenging
and spiritually reforming
when I look back today my heart becomes heavy at the same time as there is a peace
lots of moments have been too heavy to carry, moments of walking in valleys of death, corridors of illness
commutes of tears
but I was never alone
there is this bright light overtaking all that darkness
I was surrounded with people, an army of love, practical help, friendships, prayer warriors
people carrying us in our journey,
God providing us with everything in the midst of this darkness
looking back there are moments of struggle, sadness, fear
moments of death and whys
but there is so also joy, hope, new friendships, new opportunities
endurance and love
life is here and now and I have so much to be thankful for
and I know that all things work together for good
and I’m convinced that the best is yet to come
lots of love
Sofia

 

We had a wonderful Easter weekend together, the whole family, meeting up with friends
Going to egg hunts with the boys. Seeing them laughing and running. It felt almost normal. I was part of the real world, Jacob was feeling better than ever. In this moments, with laughter and sunshine I could stilling feel a pain in my heart. Like I could not believe or maybe I knew that I had to be prepared, that something more was coming. Or it is something that will forever follow me, the worry that any time, in the best of times something bad can happen, your child. I hate that feeling. But it makes me more aware of the moment, we have to live in the moment of beauty. 
I have been screaming to God, asking why, telling him I had enough. Asking him to heal Jacob

So please say a prayer for Jacob, for his lung to heal, for the leukemia to stay away forever
Pray for strength for me and David

On the evening of Easter, after all the fun and sunshine, Jacob started to complain about chest pain in the left lung and difficulty breathing.
David drove him to the emergency room and X-rays and ct scans were done. They showed that the infection in his lung had start to grow, and is now worse than ever. It takes up about one fourth of Jacobs lung and there is also some fluid.  

Doctors think the reason for this is that Jacob has been on a too low dose of anti fundal medicine. They added one more anti fungal and he is now getting them iv and they are discussing how we are going to proceed. 
Another X-ray was done yesterday to look at the fluid and an ultrasound will be done today to decide if it is a big enough amount of fluid for them to do a thoracentesis, a procedure where they with a needle take out the fluid to get a better understanding of what is in there. 
One of Jacobs chemotherapy treatments will be skipped for this month as it is more important now to get on top of the fungal infection, that we are still assuming is the cause of all this as no proof of it has been shown on either the broncoscopy or the biopsy from before.

Clinically Jacob is doing well, no fevers, just a bad cough…
we have been to the playroom, having a coffee at Starbucks and playing his games.
Soon off to the playroom again to check out today’s activities.

Right now we do not know for how long we will have to stay. At least a couple of more days. Until we have enough data and a plan on how much and what type of medicines we need to give.

Sofia 

Today we didn’t get our questions answered about what is causing Jacobs lung to be infected.. Doctors are not sure if it’s Jacobs own immune system attacking himself, or if it’s an inflammation, infection or something else.. They have scheduled another CT-scan this Friday as they need more data before giving Jacob a diagnose.. Sofia and I are very scared and feel we have had enough with the one diagnose of cancer and don’t need one more to add on top of it.. Doctors indicates that problems with the lungs can be serious and slow and hard to treat.. One of the treatments is in direct conflict with Jacobs cancer treatment so we need some positive news soon. We hope to get some preliminary answers this Friday and on Tuesday all Doctors would have met and hopefully can provide a diagnose. Help

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

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

Jacobs ANC is still high enough for him to continue school a few more days with a few breaks for going into clinic for blood check-ups and potentially a blood transfusion coming up to keep him awake. At school Jacob don’t participate in the recesses as other children but is very pleased about his special seat in the school library where they let him sit and play math games on a computer in between classes. Jacob is very happy about this arrangement and proudly showed Sofia his little private spot yesterday. Hang in there little Jake.. Kick cancers butt! :-)