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Welcome to the online communication hub for the Schaub Family as they journey through the diagnosis and treatment of Leukemia Pre-B Cell ALL, CNS-positive with their son Jacob. Jacob was diagnosed with this condition on February 3, 2011. You can keep up with their journey and ongoing needs through this website.

In the right column, you can choose to translate this website into any language supported by Google Translate. This may be helpful for the friends and family who are not in the U.S., but please be aware the translation will not always be very accurate. You can make financial donations through the big red box in the right column if you’d like to help with the expenses they incur that will not be covered by their insurance provider. We hope you’ll find this website helpful in your efforts to support the Schaub Family during this difficult time.

Hi everyone,

For tonight’s race please make your contribution before 18:00 (9 am PST) today! Some of you have already made a donation and for that I say a big THANKS.. you’re truly making a difference in the fight against childhood cancer. For those who don’t know what I’m talking about please read yesterday’s post or go to this link: http://jacobschaub.com/2014/09/tomorrow-my-training-starts (Big red donate button on the right side). Remember to notify me so I know how far to bike today.

It’s going to be crazy.

David

Dear friends and close ones.. and my family.. and cousins and uncles and aunts..

Tomorrow it’s time to put me to the test + help me raise some money in the fight against childhood cancer. Tomorrow I will start my training .. I haven’t yet got my Rynkeby bike but I got myself an old used racer (for now).. okay here is the deal I will bike 30 kilometers and then I will return home.. or (here comes the fun part.. for you).. for every $15 donation that I’ll receive today and tomorrow I will add an extra half a kilometer to tomorrows ride.. and on top of that my dear mom has promised to match each donation up to a maximum of $300 in total. So be with me in the fight against cancer and donate money, or just watch me suffer as I go the extra half kilometer for every click on that big red donate button (www.jacobschaub.com)..

I’m looking forward to tomorrows ride..

Love.

Ps: I will start biking 17:00 (8 am PST) so remember to respond to this post no later than 18:00 (9 am PST) if you want me to go the extra mile.. :)

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

 

Hi there,
I got a call from Jacobs hospital late this evening.
Last Friday he had his back poke and chemo but I also asked them to draw blood cultures, just in case there would still be any bacteria left.
They now confirmed the bacteria is still growing around his port. After 2 weeks of strong antibiotics and several flushes with hydrochloric-acids the bacteria is there, this only leaves us to one option. To remove Jacobs port.
Unless he has a fever before Monday or Tuesday this will be scheduled for next week. I did nog get much information from the nurse who called but it sounded like they will take it out and wait a few days before putting a new in. She also said the doctors were very surprised to see this…

This will be Jacobs 3rd port.

Disappointing news, but at least we are on top of things.

Jacob has been doing great since coming home from the hospital.
He has been happy to be back in school and yesterday one of his classmates called to ask if he could come over to play, I felt so happy seeing him play and just be normal.

Being thrown between these good and bad moments and feelings make me tired.
But there is nothing else to do than look this evil in the eye and keep going,
like a bulldozer,
Keep standing,
rising when falling
Keep catching the good moments,
everyone of them

Please pray for strength
For healing
And for everything to work out smoothly

Love
Sofia

I’m very happy my parents and brothers decided to come visit us,
love having the house full of people.
We also had some good friend over from Stockholm on Saturday and a wonderful Easter lunch on Sunday with our Malmö friends.
So happy to celebrate Easter with some of our really good friends and family.

Going back and fort between hospital and home is strange, for everyone of us I think. Strange to every day wave good buy as we have to split up and stay apart.

It has been a bit difficult for both Jacob and Simon when they realize the time is up and Jacob has to leave. Simon has started crying saying he wants Jacob to stay. Jacob gets upset and says he will never come back home.
But I still think it is good to come home, even for a little bit,
because even if you try to live a normal life in the hospital by doing laundry, decorating the room, and emptying a dishwasher it never gets normal.
Now I’m home and David is staying with Jacob. I’m taking Lucas to his first day of daycare tomorrow:)

Jacobs platelet count and hematocrit is slowly getting better, very slow, his ANC has not changed.
David talked to one of Jacobs doctors the other day and they do not want to decrease the iv antibiotic for his blood infection as they worry about not getting rid of it.
In case Jacob gets a fever and positive blood cultures in the next weeks we might need to get the port out.

Please pray for
Jacobs ANC to increase
for his body to heal
For the blood infection to completely be gone

Love
Sofia

David has now taken over in the hospital. I think Jacob is pretty happy as he brought 2 laptops do they can play their computer games.

David and the boys came in the morning and they all played in the playroom. Jacob was allowed on pass so we took the bus to Malmö and had a nice lunch together in the sun. I must say that was a happy moment, all of us together, enjoying some food in the sun.

Jacobs numbers looked better and his energy is back. He has bee running and smiling.

They checked the level of the antibiotic he is getting and they needed to make some changes so he now gets it every eight hours and it runs for 2, so he has about a 6 h window to go on pass.
He will be inpatient until the 5th of April.

My parents decided they will take the car and drive the 600km down to us tomorrow morning to make sure we get some Easter in this craziness. I’m looking forward for some Greek food and Finish mämmi.

Please pray for
Jacobs body to heal

Happy Easter
Love
Sofia

Busy morning. Jacob woke up in a good mood, has been playing his iPad now all morning but we will soon take a lunch break and then visit the playroom as we need to make some easter decorations to put up in our room. Except for the swedish easter eggs on the table there is not much easter feeling this year.
We got todays labs and there is very little improvement in numbers, but at least there is something.
The biggest change today is that they now confirmed that it was a good thing to do that arm poke at the same time as the blood draw from his port as when comparing them bacteria did grow from the post one but not the arm. That means there is still bacteria and it is related to the port that makes it easier to determine antibiotics and what needs to be done. And gives me a tiny break to catch my breath and try to not be so worried about his low numbers, always thinking the worst…
Todays plan is to start this new antibiotic (that he has had a reaction to befit) and therefor it needs to be given very slow, will take 3hours and it is given twice a day. Tomorrow they will check some levels and see if it can be given a bit faster. Then we could go for a longer pass down to the town at least.
David is coming with the boys tomorrow and I will then take them home.
Im guessing our easter dinner will be held here so I need to get us some nice food and also some eggs as I have promised the boys a real egg hunt.
thank you for your prayers
and keep praying
for Jacobs body to heal
Love
Sofia

Now I start to loose track of how long we have been here, what day it is, even what month it is, but we are only on day 5.

Jacob was right, we were not supposed to go home yesterday. Last night he spiked a fever of 39.9 and I got really worried. New blood cultures were drawn. Jacob woke up several times during the night wanting me to hold his hand and say a prayer so that he could fall back to sleep again. In the morning he felt better, still no immune system and needing another platelet transfusion but his red blood cells looked ok after the last transfusion.

Today turned out to a great day with lots of visitors, his friends Bella and Estelle came and Simon and Lucas and even his old friend Hjalte came for a quick hello.

In the evening there was a small party on the first floor with some rapper from melodifestivalen visiting and singing, a fun little break for us.

No new bacteria has grown from recent bloodcultures, can’t remember if I already wrote that he does have a virus that they saw on the virus test that was made. We will now stay until Jacob starts making counts again. We want to see his bonemarrow recovering and no more fevers…

Im going to bed now hoping and praying for no fevers and for tomorrows labs to be showing good numbers.

 

thank you for keeping us in your prayers

love