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

How are you, my friend asked me today
I don’t know I said, I don’t feel anything, like life is paused, like I’m just waiting
The storm is over but I’m afraid it will start again.

We have been home a while now but my bag from our last hospitalization is still unpacked. 
The dark cloud of worry that is hanging over me is his lung infection, I’m still giving him one anti fungal medication iv in his chest tube and one by mouth. But the other day the doctor called and said the one that he has been taking orally is not working, for some reason he is metabolizing it too fast. 
So we started on a new medication, hoping that will work.

Last week Jacob got very nauseous from one medication and egen he vomited his nose tube came out. We decided to not put it back, as long as he is taking the medications by mouth and eating well we will not need it. I hope we will never need it again.

The last weeks have been great, Jacob has been able to attend school and has been very excited going. 
We have enjoyed the sunshine and the boys have been playing outside.

Please pray for the anti fungal medication to work
For whatever is going on in Jacobs lung to clear
For leukemia to stay away
For strength to our family

Sofia 

We left the hospital last Wednesday as Jacob was doing well enough. 
They sent us home after teaching me how to give one of the anti fungal medications IV. This will be given until they can measure a good level of the other one that he is taking by mouth. Also they put him on antibiotic for potential bacterial pneumonia. So now we are home giving 5 different medicines twice daily by mouth and iv med once a day…
But again Jacob is doing fine, he is happy, he is eating well, playing and running.
We are going to the hospital twice a week now until the infection is under control and then weekly until we get rid of it.

This morning we all woke up early and went down to Juanita to participate in the captain jacks 8k race, supporting the leukemia and lymphoma society. They had a kids dash to start with and the boys were excited to run. And Jacob ran, after a while I saw him slow down, but he kept going, it was hard to see. He used to be so fast, and seeing him try smiling and saying,
I will run even if I don’t have any reflexes I’ll just be careful so I don’t fall.
I was worried he would get pain in his lungs, but he asked for some water, caught his breath and then continued enjoying the activities. 
I think that gave me the power to run, if my little son with decreased lung capacity and without reflexes in his knees can run without complaining, so can I.

Tomorrow Jacob will go to school for a few hours and he is very excited about it. 

Sofia

Yesterday was a better day.
After days in anxiety, panic and sadness we got some better news.

It was a long day starting with radiation, his port needle was not working so they needed to re access Jacob without numbing creme. He did not say a word, did not complain or cry. They put a needle in his chest and I was the one holding my breath.
He should have a medal, a big one for all the things he is going through…
After that Jacob had a new ct scan done of his lungs. At the clinic appointment the port was not working again, so Jacob chose a finger poke, as the option was re accessing his chest again. 
The ct scan showed whatever is in his lung has improved, after all they still think it is a fungal infection that is the cause and we are now back on anifungal medication.
Hopefully now with some immunsystem and in a phase of treatment that is not as heavy as before and with the right medication he will be able to fight this fungus.

We have now entered the part of chemotherapy that is called maintenance, for Jacob it starts with ten days of radiation, (he already had 3) and then chemotherapy at home and once a month chemotherapy in clinic.
Here in the beginning doctors are figuring out the right dosage of chemo for him and also because of this infection we will be going in checking labs more often. But we hope and wish that the time with fewer clinic visits will soon be here.

Sofia

Tomorrow Jacob us having the ct guided biopsy at 2pm that will hopefully clarify what is going on in his lung. Doctors believe there is a fungal infection but need to get it confirmed, and make sure they are not missing anything. 
His immune system has been going up until this morning when it dropped a bit, doctors say it is normal but I wish for Jacob to soon have a healthy bone marrow and a good immune system

The last days have been good, Jacob has been in good mood, and we have spent lot if time in the playroom. Jacob weaved a scarf, pirates came to visit and Jacob even played chess with one of them.

Please pray that everything will go well at Jacobs procedure tomorrow
Pray for a healthy bone marrow 

I also want to thank everyone who has been helping out the last days (and weeks) I’m so thankful an touched,  thank you for the generosity and love you are showing our family. 

Sofia