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Today was a big day, Jacob went to school. He was excited, I was nervous. It felt nice to drop him off, to feel a little bit normal but also a bit scary.
Its such a balance of normality and not risking too much. Infections, colds…being different or children staring…
but he had a great day, I love when he gets that sparkle in his eyes, he might not say it but I know he loved it. Tonight at bedtime he told me about his day and I realized how much he missed this normal life. He will be able to go two more days this week and most likely a few next week. We are hoping he will be able to start treatment again this Friday and that means his counts will start dropping during next week. After that it will take about a month until he can be back at school. Likely he will be able to be in school most of November December.
January – march will be intense, and most likely no school, he will get the same type of treatment that he just had and gave him the sores and after that he will also get radiation. Scary to think about, so we just take one day at the time, enjoy and celebrate everything good and the small steps towards recovery.

The last week has been a recharging week. After those hard painful days we could finally breath. Jacob has been feeling well and life goes on. Having David home from work and his mom visiting has been a blessing during this hard time. Sometimes things work out for the best even in the worse of times.

Life is different from what I expected and it is not how I planned it. But I still believe the best is yet to come…

/Sofia

seattle 086

More photos and video clips from Sept 19-27: http://www.flickr.com/photos/36414830@N02/sets/72157627646510997/

September 21, 20011 – Jacob and Isaac

Me and Jacob went to the clinic this morning for labs and check on his blood counts. ANC is 533 which is up since Sundays 230 but not enough for starting his chemo treatment again and we will come back on Friday this week to check if it’s up to 750 which is the criteria for beginning chemo again. On the bright side today Jacob met a new friend, a boy named Isaac. Isaac also has Leukemia like Jacob but unfortunately has relapsed and is getting chemo injected directly into his forehead as an addition to his chest port. The meaning of Isaac I found online is “He will laugh” and nothing could be truer than how to describe this wonderful little 6 year old boy. Isaac shined up when he laid his eyes on Jacobs IPAD and angry bird game… Jacob showed Isaac his angry birds toys also that he had brought and after a while Jacob and I agreed that we should offer one of Jacobs angry birds toys to little Isaac as his mother mentioned she had been trying to get one at the store but they were too pricy. Anyway I am posting the photo I took of Jacob and his new friend, a friend that we plan to visit soon over at Ronald Mc Donald’s house as Isaac wrote down his street, house letter and room # on a post-it for Jacob. Isaac is a wonderful example how someone that is going through the absolute worst thinkable scenario (relapse) shines with his kindness, joy and laughter. I have always loved children but never in my life have I got this attached to someone this fast. We can’t wait till we can visit little Isaac at his Ronald Mc Donald home and play. As Isaac is being brought out the clinic on a wheelchair Jacob says “I want to go to Mc Donald’s house and play with Isaac now, not another day”, Jacob also seems to be noticeable attached to this little sweet boy of his own age with a somewhat uncertain and bumpy road in front of him and his kind mother.
Let’s hope Jacobs ANC is up to above 750 this Friday so he can begin treatment again, it has been a week almost now since he was supposed to start it and we don’t like to delay these important schedules.

David

Jacob and Isaac

yesterday we were finally able to leave the hospital, eager to go home I asked for Jacobs labs as soon as I woke up. To my big disappointment his anc had dropped and I was pretty sure we were going to stay. But when the doctors came in they thought jacob looked well, and with no pain or fever for several days they felt comfortable sending us home. Jacobs face was glowing, and as always we sang the ” we are going home” song, (that we made up a while ago).
Jacob and Simon have had so much fun together today, running around playing in the yard. I felt almost normal.

We are going to the hospital on wednesday to see if we can start the treatment again,

So please pray that Jacobs body recovers fast
and for more happy days:)

We have stayed here at children’s longer than we expected. Things are going forward but slow. The belly pain is gone. On Friday Jacobs anc went under 200 what is considered as 0. So he couldn’t even go to the hospital school. Instead he played minecraft the whole day online with Simon. 
When I told him that we were not going home today he was disappointed, I saw that in his eyes and I asked. I explained why and he understood and accepted and continued his game. 
Today Jacobs anc had gone up a bit and if it keeps going up it means that the infection in the belly is healing, the antibiotics are helping and that his bone marrow is now producing the white warriors we need. 
As it looks now we will start chemotherapy again on Friday with a back poke and infusions, but as outpatient. For that chemo we have two rounds where we have to go to the hospital every day for 4 days and get infusions for 3-6 hours. After that we have two Fridays in a row with just IV push and a shot. So this round will last for about one more month. And then we will be more than half way through the most intense part…

Please pray
That ANC goes up, so we can get home
For Jacob to stay healthy so we do not need to stay at the hospital

Today was a different day at the hospital, Jacob went to the hospital school for the first time, and suddenly life felt a little bit normal. A different normal. While he was in school I took care of the laundry and had coffee, same things I would do at home.
When I went to pick up Jacob from the school room I felt like entering a film studio, like suddenly being part of some kind of horror comedy.  I see the teacher and 4 excited children, eager to learn, laughing and making jokes. Two boys hooked up in IV poles, thin haired, cheeks swollen, one with his port in the scull. The other two in wheelchairs, a little girl who’s head is attached to a metal circle screwed to her head, a little boy covered in bandages. Only frankenstein himself was missing… Surreal. 
The room was filled with joy, joy in a ugly box without the silky tissue. Real people, real life. 

I went home tonight and David is at the hospital with Jacob. Jacob is feeling better, had some belly pain when doctor pressed on his  belly this morning and ANC went down to about 250. Before they send us home they want to make sure Jacob has no pain, and to start chemotherapy his anc has to be 750. 

So keep praying for Jacob to recover 

Sofia

August 18 – September 10, 2011

 

Simon is supermonkeyman

Simon is supermonkeyman

 

Sofia och Lucas.. Sept 5..

Sofia och Lucas.. Sept 5..

 

September 10, 2011 I backed up the boat trailer against the house and hit the gas pipe.. fire department was very impressed that we had an underground automatic shut off system so no gas was leaking out.. kids got their fire hats. lucas was eating his.

September 10, 2011 I backed up the boat trailer against the house and hit the gas pipe.. fire department was very impressed that we had an underground automatic shut off system so no gas was leaking out.. kids got their fire hats. lucas was eating his.

 

Every night Jacob needs his medicine.. Its amazing though that we can give the majority of his chemo shots from home without having to take him into the clinic.. He will need more than 100 chemo treatments and taking them all at a hospital would limit his

Every night Jacob needs his medicine.. Its amazing though that we can give the majority of his chemo shots from home without having to take him into the clinic.. He will need more than 100 chemo treatments and taking them all at a hospital would limit his

 

Lucas in my friends 1999 Porche Boxter.. I can see where this is going.. these blue eyes and handsome look.. and a convertable.

Lucas in my friends 1999 Porche Boxter.. I can see where this is going.. these blue eyes and handsome look.. and a convertable.

 

Sofia driving the boat. San Juan Islands. Aug 20, 2011.

Sofia driving the boat. San Juan Islands. Aug 20, 2011.

 

San Juan Islands.. the week we all got to go away.. Aug 18, 2011.

San Juan Islands.. the week we all got to go away.. Aug 18, 2011.

 

September 10, 2011 after my 911 fire call the local Kirkland police came up the hill to impress the boys with the Dodge Charger (standard car for our local polices)..

September 10, 2011 after my 911 fire call the local Kirkland police came up the hill to impress the boys with the Dodge Charger (standard car for our local polices)..

 

After 3 years in the US we finally absorbed the local tradition and converted our perfectly fine 2 cars garage into a storage dump. :)

After 3 years in the US we finally absorbed the local tradition and converted our perfectly fine 2 cars garage into a storage dump. :)

 

A mother and her sleepy cancer child… picture taken Sept 5.

A mother and her sleepy cancer child... picture taken Sept 5.

 

a fish (pink) outside of Roche Harbor. aug 20. san juan islands, I miss you.. when can come back.. :)

a fish (pink) outside of Roche Harbor. aug 20. san juan islands, I miss you.. when can come back.. :)

 

/David

Jacob uncut – Clip taken September 10, 2011

if you are sensitive dont watch. this is our life, in raw format.

Jacob is getting better for every day. He is still on two different types of antibiotics. His sores are getting smaller, he has less pain and needs less pain medicine, no fever, and anc is slowly coming up. He is happy, he wants to play, paint, build legos and tomorrow we will check out the hospital school. 
I’m hoping to go home tomorrow but doctors said it’s more likely that will be Friday or Saturday. next chemo is scheduled for Friday but will most likely get delayed a few days as they want Jacob to completely recover.

If  I had to answer to what part of the day was the best it would be when I downloaded this silly app where you can try different hairstyles…so we took a picture of me and then tried celebrities hairstyles to my face. Jacob giggled and laughed so much that the nurse had to come and see what was going on. I do not look good in any of those celebrity styles!

Please pray for Jacobs body to heal
For his blood counts to recover
And for strength to the whole family

sofia

Jacob uncut

Jacob uncut (post 100)