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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/

seattle 069

 

 

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/

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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/

Seattle 547

 ”Im more brave than strong” … Jacob said today, he can feel that his strength is not back to what it once was but he knows that to manage all the things he is going through he is and has to be very brave.
Today Jacob went to the hospital with Simon and dad, it was a short chemo infusion and after that they enjoyed the nice weater by playing in the sand and fishing from the boat. Today Jacob has been eating well, for the first time in weeks. The other day he had pizza for breakfast and the day before spagetti. His apetite has been decreased so we have made him whatever he has asked for. He is now getting night feeds through his tube and he has already gained some weight. He has been complaining a little bit when he wakes up that his stomach feels full and hurts a but it only lasts for very short. Jacob is still tolerating this round of chemo well, no voimiting and we are giving him anti nausa medicin. On wednesday we met the kidney doctor, we decided to decreas his blodpressure doce, and his bloodpressure has continiued to bee good, hopefully he can stop taking it soon. I was optimistic about the magnesium but yesterday the magnesium was low again..
Until yesterday Jacobs counts have been over 500, this made it possible for us to do some fun things. like play with Hjalte and go to the school carnival, he enjoyed it and so did I. Yesterday counts had dropped to 421and he also needed a blood transfusion as hes hematocrit was 21.5 (hb 7.0) That transfusion on the other hand gave him superpowers, when we came home after a 7 hour hospital visit he was running around outside, wanted to excrsice, set the table, help in the kitchen..
Now we have 2 more days of cytarabine chemo and then he is getting the vincristine shots on friday. He is a little bit scared to get those and he asks what we can do to make it hurt less..
The other day he said. mamma, I think I have the longest cancer ever…because I will have it until I turn 7.
He also asked the nurse practitioner we had a meeting with, why do kids that eat well and do all the right things get cancer?
…Jacob thinks and asks a lot but not in a sad way, he just wants to know…
Simon to Jacob:
S. I also want my own Ipad 
J. but I got mine because I have cancer
S. I also want to have cancer!
/Sofia

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