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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

 

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