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

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

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