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The days start to float together, it’s been a long stay, 
Jacob has been sleeping most of the time because of the Benadryl he has been getting.

We are still here with more questions than answers
Jacobs fever went first away with the antibiotics but came then back again after a few days and more antibiotics were added. Now he has been fever free for a couple of days and I hope this is how he will stay.  

Jacob has had ct scans done of abdomen, sinus and lungs.
There is something still in the left lung that was not visible in the previous scans, something 1x1cm in size. Doctors are now discussing wether it is something new or if it can have been there but hiding before. 
A fungus test has therefor been made and also different types of viral tests to see if there might be something else going on.
Jacobs other numbers are starting to slowly get higher and he will hopefully be staring on his oral chemo again in the next couple of days.

Hopefully tomorrow we will have some more answers.

We have been down to the playroom a couple of times but Jacob has only had the energy to play for a little bit.

Today we walked to the cafeteria and had some ice cream that
a man in the line behind us payed for 

Jacobs appetite is getting better
even if he mostly eats ice cream  :)

Please pray fog fevers to stay away
and for bone marrow to produce strong healthy cells

Sofia

We are back at the hospital, got admitted yesterday as Jacob had had fever for four days. His immune system had dropped and doctors looked for different type of infections.
Jacobs bacteria cultures came back positive earlier this evening, that means he has an infection in his blood. 
He just got antibiotics for that and had a reaction so they had to give him Benadryl and slow it down, not uncommon, but a bit scary as he turned very red.

Jacob was very sad when he woke up this morning and wanted to ho home. He has been sleeping almost all day, not eating and getting fluids to not get dehydrated. 

We have been in isolation, meaning we can’t do much more than stay in the room. Now we are taken out of iso, and hopefully Jacob will start feeling better tomorrows so we can visit the playroom.

Please pray for 
Jacob to feel better, for the infection to go away
For his bone marrow to produce strong healthy cells

Sofia

Jacob has not been feeling well the last days. He is very tired, has joint and jaw pain and is very moody. It can be a side effect from his chemotherapy but can also be low hematocrit. We are going in to clinic tomorrow to see what his numbers are

For me to has been very emotional, I have felt very sad seing him like this, probably because it reminds me of the weeks before he got his diagnose.

To clear my thoughts I started running and i got inspired by Jacobs teacher Rosemary, so I joined the TNT team.

this week I shared a story with my team, a story Jacob and Simon have been part of creating

Once there was a little boy that loved to play, run and joke. But one day he started to feel very tired, his legs and belly were hurting and he did not want to play. He just layed on the couch and even on his 6th birthday he did not want to celebrate

His mom and dad were worried and sad, so was his little brother. So a day in February his parents took him to Seattle children’s hospital.

The doctors looked worried and were talking outside the room with mom and dad. Mom came in to the little boy and told him that he was very very sick, and they had to live in the hospital for a while.

The little boy nodded, he already knew, because already then he was a boy with very special powers.

Those powers made people love each other more, care and show compassion. He made people aware of life and death and despite all the pain he went trough he kept smiling.

What had happened to him was that a evil king called the evil king leukemia had sneaked in to the little boys blood, where he created an army of evil warriors that was killing all the good white warriors and also the red and orange friends called, cells.

The doctors had to give him a very strong special medicine, called chemo, to kill all the evil. The little boy started to feel better, but because evil king leukemia is very sneaky and can sometimes hide, the boy had to take the special medicine for years. And even if that medicine often made the boy feel bad, made his hair fall off and made him tired it was very important for him to get, and he knew that and he kept fighting and smiling.

This is why there are people who are working hard, running, sweating, biking, swimming, hiking crying and writing to find new, better medicines and to one day find a cure so that no boy or girl ever needs to be to sick and tired to play

And to one day destroy the empire of the evil king leukemia forever.

 

You can read more about what I’m doing on

http://pages.teamintraining.org/wa/nikesf12/sofiaschaub

 

Sofia

Jacob has not been able to be in school in a while.
We gave been going to the hospital every day. 
His cough got worse, his lips were bleeding. His numbers went down so he needed a blood transfusion.
He got a virus and were recently also put on some antibiotics as he had a fever and the bad cough.
He switched to another anti fungal medication that seems be working. Tomorrow he is supposed to get his in clinic chemo that he did not get last month due to his infection but I hope even with his low numbers he will get if tomorrow.

Last night I noticed his port line looked strange so david took him in to the emergency room. They did X-rays to make sure everything is in the right place and for now things look good. So we can get home today.

Please pray for 
Jacobs cough to go away
For lungs to clear
and body to heal

Sofia