Hematocrit 23.4
Platelets 47
Anc 9

Mom, can I have some bread with salami, I really want that, I haven’t had much to eat today, can I?
Sure, I bring you some
But when you get it and it gets close to your nose you turn your head away
Mom, it doesn’t smell good, not the way I remembered, is it the chemo? It must be because I really wanted salami… Can I have oatmeal instead? I know the chemo will make the oatmeal taste perfect.

Today the numbers went down even more. But the doctor reassured that this is expected. That the bone marrow is working but it is tired. And that might take a while now to recover. 
How tired can it get before stopping? Every day in the car on my way to the hospital I hope for a miracle, and every time I feel that this journey is too long, and too painful.

jacob had a good day, except for some nausea in the evening.
We (he) decorated for Halloween so now we have spiderweb everywhere. When he was done he said, mom now we are ready for halloween!
Most likely Jacobs immune system will not be strong enough on Monday to go to school, so he will miss the halloween party there and also the one they organize at Davids work. Maybe we can just do some trick or treating outside in the neighborhood. 

We are going back to the hospital for labs on Friday, and he also has an appointment on Saturday in case he needs a transfusion.

lucas is growing and it is not as easy as before to bring him to the hospital, he wants to crawl around and puts everything in his mouth. We will soon have family here again to help us. I will try to update the calender.

Every time someone asks me how old Lucas is now and I answer, my mind always travels to those days and to Jacob, to  how it all begun and that Lucas age is almost the same as how long  Jacob has has had cancer. I will never get used to that word in the same sentance as my little boys name, cancer…

The last days has been harder than ever, we are all very tired, all energy is gone

Please pray for us to find strength
To feel hope and be able to visualize the future together

Sofia

Blood… Our nightmare begins here, the familiar red fluid in the body that contains white and red blood cells, platelets, and other ingredients. Never had to learn much about it before that day, February 3rd 2011, the day Jacob began his day bleeding from his nose, a bleeding which in hiding without us noticing won’t clog or stop and continues undiscovered throughout the morning as Jacob swallows more of it culminating in he is vomiting blood in the class room and later also in the hospital emergency room. That was the absolute worst moment in my life, standing helpless next to Jacob watching him fill a bucket with blood crying for help.

I don’t find the actual blood scary anymore, blood is good; lack of blood on the other hand is much scarier and seeing Jacobs’s blood counts now down spiral over time creates a constant anxiety knowing the chemo treatment gets put on hold each time Jacob counts take a dip in the charts. The center of anxiety is the place in Jacobs’s body where his blood cells are born and sparked to life, his own “blood factory”, the bone marrow. Jacobs’s chemo treatment makes his bone marrow weak.
It’s a week since Jacob was able to receive chemo, his blood counts hit all-time low recently and todays labs made it evident his bone marrow is currently not able to produce blood. No noticeable production of Hematocrits, Platelets or ANC’s among other things. Hematocrits, the red blood cells that transports oxygen to organs and tissue is what keeps Jacob awake and active and the lack of it increases his heart rate as his body tries to compensate the lack of oxygen. Platelets, needed for blood clogging so that for example a small bruise don’t develop into unstoppable internal bleeding where no Mickey Mouse Band-Aid in the world can get to it. ANC the most critical ingredients, these white warriors who marches the body to fight bacteria’s, viruses and fever can’t be supplemented through blood transfusion as only your own bone marrow has the magic recipe to produce these.
On Monday we will go in for labs again and hope Jacobs Hematocrits, Platelets or ANC’s has increased showing a sign of life in that bone marrow of his. He is also scheduled to begin his next chemo treatment phase Monday the following week and although it might be too much to hope for we sincerely hope we can get some good news for once and KICK THAT CANCERS BUTT HARD!!
David

We are back home, left yesterday as soon as the 48 hours had passed. Jacob was doing fine all the time, the only fever he had was there under the transfusion, but with no immunesystem we are not taking any risks. It might have just been a reaction on the transfusion. We will probably never know for sure.
We are continuing anibiotics at home until his immunesystem comes above 200.
mrs Humphreys was able to come to the hospital yesterday to tutor Jacob, he enjoyed that and so did I.

We are happy to be back home and together again.

I have a prayer request today as my heart is filled with pain,
Please pray for the Blunck family in Sweden, their 4year old daughter Elsa’s cancer is back after her transplant and there is nothing more the doctors can do.

Sofia

Today was a long day, long and not what i expected or planned. I would know better, not plan, but I need to, I have to plan, put some order in this chaos, but I don’t know how.

Yesterday Jacob got a red blodcell transfusion, today he needed platelets. I knew that before we arrived because he had a nose bleed in the morning. He has not had that since that first day…so yes, that brought back memories, fears and sadness

After a turbulent morning we finally got the platelet transfusion going. During that Jacob suddenly starts shivering, I can feel he is warm and when the nuse checks he spikes a fever. Because he does not have any immune system it is hard to tell for sure if this is because of the transfusion or a virus or a bacteria.
He gets immediately admitted and has to stay for at least 48 hours. 
We checked in, and are now in isolation. The room is really nice.
I stayed till late, then went home with Simon and Lucas, David is staying.
Jacob got a new game, scribble, on his iPad and played all day. He did not complain once, my hero. He cried a little bit when they did the viral test. It is pretty uncomfortable as they put a tube in your nose and suck out snot.
Lucas has been great, but he wants to explore and put everything in his mouth, just to keep me busy.

Thank you for your support, help and love

Please pray 
That Jacob gets well and can come home soon
For his bone marrow to recover fast
For the whole family to get rid of their colds
For me and David to stay strong on this journey

sofia

Jacob has been able to go to school 4 days this week, that is more than we expected and he had a great time. Yesterday his ANC had dropped to right below 500 so now there is no big crowd visits for a while. His hematocrit (red blood cells) and platelets had dropped too from the recent chemo. They called us yesterday and scheduled a red blood cell transfusion for today so David  and Jacob are at the hospital right now. The nurse who I talked to asked if Jacob was very tired and not feeling well as his counts were so low, but you should had seen him and Simon yesterday, running jumping and chasing each other. I do not know were that energy comes from, as it is obviously not his red blood cells carrying oxygen, it must be the mind somehow, it must be not knowing how you are supposed  or expected to feel. 
Lucas is just recovering from a bad cold and so is David, I just got it. 
We are worried, because if Jacob gets it we will be admitted. How do you avoid sick people when the ones who are sick are they who have to care for you? 
This round of chemo goes on until the 24th of November. After that Jacob has to recover to start round 5 and also to be able to go to school. Hopefully he can go most of November and December, but it is impossible to plan, we just have to take every week or every day as it comes.

Im so blessed to have such wonderful people around me,
sometimes I think, even if it is a terrible thought that if this horrible illness wouldn have come I would probably not have got to know many of you. 

There is not a day that goes by when I do not wish that this illness never happened, but there are things I have learned that I wouldn’t if it didn’t. Pretty hard way to get the lesson though.

Yesterday like many past days I felt very loved. for me yesterday’s beautiful sunset was a reminder of the worlds beauty, its shifting colors, purple, pink and orange, magical and beautiful. 
with me starting to get a bad cold, I was of course very worried that Jacob would get it.  
so I was cleaning, not just because my house look like a bomb just exploded but there can not be any germs…bathrooms, kictchen, doorhandles, stairs… in the middle of everything I take a break and see an email, where my friend ask if I need cleaning help. did you hear my thoughts? did someone whisper? thank you. 
the tiredness was catching up, the ibuprofen did not help much to the cold symptoms. I felt panic, how should I make it, what about the dinner? Jacob probably wont eat anyway, what if we just skipped dinner, I’m too tired. 
someone knocks on my door, Jacobs says, its someone nice… 
thank you for coming friend. thank you for bringing dinner

I cannot thank you all enough. for watching Lucas when he has a cold and I need to take Jacob to the hospital, for picking up or watching Simon, taking him to the park when I’m too exhausted to do anything, for bringing dinner, for making me eat.
thank you for all the treats you now and then leave on my door, thank you for your thought, prayers and care. I wouldn’t make it without you

You might think I have things under control, I don’t, everything is upside down. every day is a roller coaster. I try my best to enjoy the good moments, even the smallest, and I’m praying for strength to handle the hard moments, I pray for patience and hope, I pray for help to believe and trust. I pray for this nightmare to end
in those darkest moments You are here. you send angels, or people that act like angels. people that makes burdens lighter, that show love, that care, that help, without me even asking

asking is very difficult for me
because I have to put away my pride
where I come from you do not ask for help until you admit you are defeated, and many times not even then
asking for help is admitting you can’t do it, it’s admitting your weakness
weakness of the super people we try to pretend we are. the perfect mom, wife and friend. I do not know if she excises but I’m not her

…so thank you for helping me ask…

sofia

As many of you already know Jacob has not been able to start his treatment again because of too low counts. It looks like his bone marrow is still working as it is making platelets and red blood cells and also white ones, but it’s just not the white once that makes his immune system stronger, the ones we need to start treatment. Doctor said that a two week delay is still in the normal range, and this is most likely caused by him getting so much treatment, that after a while the bone marrow gets tired. 
It’s just sad, not what I (we) wanted to hear, the fact that a six year old boys organ, my sons blood factory, is tired. That to kill the cancer you need to give so much poison to it that it affects what is healthy too. 
This was not what I wanted to hear, I want things to go forward, I want him to have a quicker recovery, I want to rush things. All I wish is him to get healthy. To this to be over.

so if you would ask me today how I feel I want to be honest
often when people ask how Im (we are) doing, I say fine 
because under the circumstances we are. we have a nice home, we did not need to move to get closer to the hospital, we have friends and family who loves, helps and supports us, and we have each other
when they ask about Jacob I (we) say he is doing well, because he is. he is happy, he can play, he can run, he is not in pain, he even went to school a few days 
I say that things are good because they could be worse 
it does not mean he does not have cancer, that our hearts are not filled with pain, that more painful days might come. it does not mean that I’m not all the time thinking about everything that can happen to him, that I need to sanitize the stairs the bathrooms the door knobs or everything he might touch
I do not say that sometimes I can’t even breath because it is too painful 
there is a lot I do not say because I need to focus on the good things, the things that makes us go forward, the life we have
most days me and david take turns to cry or comfort each other, but today we both cried, outside, in the dark where no one could see

I know soon there will be days he can’t play with others because he will not have an immune system, we cannot go to school or a store because he can’t be in crowds

I just try to live as normal as possible, laugh as much as I can and cry when I need to

some days it is easier to breath, but today I’m holding my breath

I want to ask you to pray for Jacob, even if you don’t believe it works. Please do it because I believe it does 

Sofia