These last days I and David have felt exhausted. But the boys seem to have lots of energy… they have had picnics outside enjoying the nice weather, Simon started soccer, played kinect, we visited our neighbors and the horses and Jacob and Simon have been having lots of fun together. I started reading about the different chemotherapy drugs and their side effects. I read how bad and tired kids can feel during chemotherapy and I’m looking how Jacob is running around with Simon laughing and fighting with their light sabers…

It is always scary when a new phase is about to start. How will Jacob tolerate this round? How will it be being hospitalized again, the scary days from the start are popping up…He will get a high dose of Methotrexate plus some other chemo and this often gives nausea, mouth sores, loss of appetite…

If Jacobs blood counts are high enough on Friday this treatment will start, with a back poke on Friday and then hospitalization on Saturday and he then has to stay there until he cleared the chemo. When they do a back poke they also look for leukemia so that is also something that makes us nervous, just the thought of something hiding or not responding as expected…

It is very likely that the treatment is getting pushed one week as Jacobs counts were super low yesterday, ANC 32 and platelets 62 ( anc has to be over 750 and platelets over 75 to start treatment)

Please pray for

our anxiety to go away

for the next round of chemo to go smooth, without side effects
for Jacobs body to recover fast

for Leukemia to stay away

Sofia

photos:

http://www.flickr.com/photos/36414830@N02/sets/72157626598369669/

Helg igen och äntligen min tur att få spendera lite tid med jacob.. det låter kanske märkligt men jag har börjat se fram emot helgerna då vi håller på att bearbeta fram en liten “deal” med jacob att det är pappas dagar och jacob är alltid extra mysig att hänga med när det bara är oss. La även in en liten filmsnutt på simon från häromdagen när han försökte smuggla med ett 20-tal leksaksbilar till dagis (i en mössa). -David

Några videos: http://www.flickr.com/photos/36414830@N02/sets/72157626675970856/

Today was a day off the hospital; Jacob played a lot with Simon. The day started with Jacob hurting his leg and two big bruises appeared. Every small scar or bruising feels scary right now as his blood counts are going down rapidly. He had to get a platelet transfusion yesterday and tomorrow he is getting one more red blood cell transfusion. Yesterday was a long day at the hospital, we were only going in for doctors visit and those leg pokes but Jacob needed platelets before he could get those pokes so we were there for 6 hours, and Simon was with us too. We left him in the siblings play room but after 1.5hour they paged me because Simon had said “call my mommy”. I had brought their Nintendo’s so they played Mario for several hours while I was entertaining Lucas.

On our way home I felt exhausted, it is a blessing to come home after a day like this and find fantastic dinner and a clean house waiting for you. It made me cry, thank you again for all the help I (we) get, it’s so appreciated and needed.

These following words will be more personal than I have been writing before, we are giving updates, when people ask how we are doing its easier to focus on facts than on the feelings behind, because it is too painful. We try to do and be normal on the outside but our hearts are aching. So I need to let some of it out. These last days I have been thinking more about what is happening and what has happened, I went through some of the hospital papers and to the beginning of Jacobs story to those first days…all the numbers are a mess…tears are falling and my heart is breaking but I cannot remember everything. The most terrible things that are written there have disappeared from my memory. I start to realize that a lot of the things that have happened during the last months have been suppressed, and I know why, because when I read what I have been through and what Jacob has been through it is too horrible, not possible to not get insane…that little child gets his body pumped with meds, poked over and over and still every day he tells me he loves me. I see his scars and my soul is breaking. Why him? Why my little boy? This is the nightmare and I can’t wake up from it, I can only survive if I try not to feel too much just do what I have to do.

This is not life, this is survival mode…

I want to scream that it is enough now, I do not want this anymore, I want everything to get back to normal like it was.
One day at a time, that is the only way to live. How I wished all this would just go away, but I just have to keep living,
because there are moments in between this madness I do not want to miss.

Please pray for
Jacobs counts to recover fast
bruises to disappear
magnesium level to get normal and kidneys to heal
blood pressure to stay normal so we can come off the blood pressure medicine
our mental health and to stay strong

/Sofia

Photos: http://www.flickr.com/photos/36414830@N02/sets/72157626547257619/