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Mamma! I want pizza!
Yes love just let me open my eyes, I’m not even awake:)

I woke up with a smile,
hungry means feeling better and that was just what I asked for.
At rounds our Icelandic doctor told us they are changing Jacobs IV med to a tablet to make it possible for us to go on pass, we were even planning on a stay at home over night pass. But for some reason Jacob did not want that.
He got really upset, and even worse when he heard he had to get a blood draw from his arm.
They wanted to see by taking blood from both the arm and the port if it might have been just a port located bacteria.

Then he spikes a fever again, so no home pass for today, I guess he had already started feeling worse and that was the reason he did not get excited about going home.

A blood draw from the arm is Jacobs least favorite thing. It took me an hour to convince him to put numbing cream on. And when the time was there to do it he was crying. It’s very rare he does.
He is such a trooper.

We walked down to the cafeteria and bought him a stuffed animal…to join the collection of poke, scan, x-ray teddies he collected during these years…

He started feeling better after some fever reducer and we borrowed the pippi longstocking key and went down to the playroom. There Jacob first made a sign to keep thieves away and then we played.
Back at our room he put his sign up on the door, when the nurse came in she said she almost did not dare as she got too scared and thought he wanted to keep nurses out.
No it’s for the thieves! Jacob said
What he had not thought of was the nurses are all wearing blue here… :)

Jacob is looking forward for some visitors that are planning to come tomorrow

We will wait to see how his counts are recovering and checking for fevers

Please pray for
Bone marrow to recover &
fever to stay away

And just a little note to my Seattle hospital friends, the parent beds are nicer here. Still that plastic mattress but at least it has an extra plastic top mattress to add on so that it gets a little bit more comfortable and now when I’m writing I think if I would try to get an extra blanket to put in between the plastic top and the sheet it would make the trick.
Also they give you a duvet instead of that thin blanket, I like that:)

Love
Sofia

Jacob woke up with a headache,
He looked really pale, almost gray.
Did not want to eat and the daylight made his headache worse.

When taking the morning labs his port did not work and we needed to wait another hour.
Finally with labs drawn I was just sitting there waiting
Hate that waiting

Doctor came in, Jacobs numbers had dropped,
He was in need of both red blood cells and platelets
Also the blood draw from Friday had come back showing bacteria in Jacobs blood.
So we were now looking at a blood infection in a boy without immune system or red blood cells or platelets

From everything being almost normal
We are on zero again

The good thing is we now know what we are dealing with.
But we will be staying for a while.

We had some visitors today and they apparently knew how to make a little boy smile and forget his pain, bringing him pizza and Jacobs favorite candy:)
I’m not complaining as I got some chocolate too;)
Jacob even told the nurses how this special candy takes away headaches.

I’m hoping he will have more energy tomorrow so that we can go to the play room or even visit the hospital school.

Please pray
for Jacobs bone marrow to recover
for infection to go away
for his body to heal

Love
Sofia

I guess it’s time for an update
After a very long time…it´s been almost a year
Lots of things have happened since my last update, mostly good things. But I guess the biggest thing is that we are back on that other side of the planet again.

Again far away from many loved ones, close to the loved ones we before were missing.

We are now back in Sweden, closer to our family.
It was wonderful to be able to spend the Christmas holidays with our family, be back in the city I was born in and that  I had not seen for years. It was a  joy seeing the boys play with their cousins and friends they had not seen in very long.

But it was not just easy, it was in many ways more difficult than I had expected.

I think we often romanticize our past, the life we do not have

We do not see that time change us
That people change
That cities change
But most of all I had not realized how much I had changed

My years in the US changed me, my years in Copenhagen and Malmö.
Cancer changed me

Our life here is still new and lots of things are still not in place. Soon we are moving to another rental (now a house so David can barbeque again) David just started a new job, Lucas is starting daycare next week. Simon and Jacob have been going to school now since january and I will start looking for a job…

Jacob continued his treatment on his US protocol when we moved back in november and has been doing great, with only a few hospital visits and once as inpatient until just a few days ago. About 10 days ago Jacobs numbers (ANC, hematocrit and platelets) started to drop. He has been really well for over 6 months and I have tried to live a normal life. So when I saw the numbers changing, him getting more tired, my mind was back in how it all started.
This past week when I picked him up from school he was usually sleeping as a full school day totally wore him out.
Last Thursday evening he started complaining about belly pain,
my cancer alarm went on about something beeing wrong and Friday morning his temperature was 39.4

I went in to what I call fight mode or warrior mode. Structured, coordinated.

Simon and Lucas got dropped off by David and I’m packing the hospital bag.
We called the hospital, this time choosing the big one as I “knew” we were going to stay.

Jacob gets admitted as his white blood count is low , like the rest of his numbers.

Today Jacobs numbers are even lower, it takes me some time and discussion to understand his numbers as they look different from what I’m used to in the US, its a bit frustrating as Im used to be able to read the reports, instead Im looking at

Hemoglobin 100,
B-leukocyter 0.3,

B-neutrofila 0.1 (anc 100)

Trombocyter 32
Crp 53

Doctors think its an infection, most likely viral as bacteria cultures have not grown, they stillmight but for every day its less likely. What they do expect is his numbers to start coming back up within the next couple of days, so suddenly we are in the waiting game again. That frustrating, hate game, where you cannot do anything but wait, pray and hope.

 

So tonigt when Im sitting here, just as so many times before, in a hospital, with Jacob,  only this time in another part of the world

I do want to ask you to pray for Jacob

For his bone marrow to recover

for cancer to stay away

I want you to pray for me and David to stay strong, as years of living with a child battling cancer has made deep wounds in on our souls

thank you

Love

Sofia

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

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

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