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some people look up to celebrities, or people from history 
I look at my friends, at my family
you who inspire me, 

friends who work for the right of people
who visit countries of injustice to help
who cleans their friend bathrooms, their house
who folds their friends laundry when they have a pile of their own
who volunteers at Ronald Mac Donald house and starts programs for families in need
friends who runs races and raise money for the cure of their children or others
friends who run errands for someone they never met before
friends who serve others with food, families in need, families with newborns, families with illnesses
who open their homes
friends who donate their time sometimes money but most important their love

friends who knock on my door to help clean, or watch my boys
run my errands, brings food, brings treats a small gift
sends me to a spa, takes me for a weekend away
friends who listen to my deepest pain

Many of you are new friends, people with a heart I never experienced before, a heart to help when you did not know who I was. But you stood there at my door telling me we are here for you, we want to share your journey, your burdens. You sent emails and text telling me you are praying for us, you sent us strength in our darkest moments.
Friends and a church that opened their arms before thew knew us, before I was a member and to my husband who says he does not believe, you have changed us in many ways. You helped me survive.

Im blessed with both new and old friends and family who love us and are here to help us survive this long painful journey 

There is always something we can do, the smallest act makes a difference

I do not know how to thank all of you, for everything you have done for us during this year. I love you

Merry Christmas to all of you
Lots of love
Sofia and the boys

We have had a long nice break from the hospital, but yesterday we were back for EKG, labs, doctors appointment and chemo. Jacob has been doing well and enjoying the days off both from the clinic and school. 
Seems like even the hospital staff are in holiday mood, bad for us as it caused them to forget to order and send off the labs yesterday witch resulted in us staying for two extra hours. and today we had to wait for over one hour because they had the wrong time set up for us in one of their systems. 
These small things are very tiring, no point to get too upset, we all do mistakes but for me it causes lots of stress and negativity. So yesterday I went to bed same time as the boys without dinner, too tired to think about anything. 

Now we are sitting here again, at children’s waiting while the blood is slowly entering Jacobs body. He is amazing, even though he has been a little more tired the last two days I was surprised that his red blood cell count was this low. How come he could still jump around sword fighting with Simon?

By this time of year the Christmas spirit is supposed to be on its peak, I feel sad, because I can’t feel it. We did get a nice tree that the boys decorated, that I enjoyed, they made some cute decorations and we did put up the garland in the stairs. But that feeling, the light happy holiday feeling seems to be very far away.

This chemotherapy phase has been a nice break. A small pause from the huge stress and long frequent hospital visits. Now that phase is over, we now go in to a recovery phase waiting for numbers to go up to start the next one. Hopefully the last hard one. 

Please pray for
Positive thoughts
For strength
For illnes to stay away now when Jacobs immune system is on the lower side

Sofia

Sofia

Monday, preschool for Simon, children’s for Jacob. 
Last time we were here was Friday, twice. First for labs, looked good and there was no need for transfusions over the weekend. But back home Jacob forgot he had his nose tube connected to the backpack and run away from it. That made us drive back to the hospital and put it back in. It was hard for him, and for me.
I don’t want it…please don’t put it in… He was asking the nurse. But he knew we had to.
I’m scared…please…don’t put it in…
Then he turned, sat up straight, closed his eyes and swallowed the best he could while the nurse put the tube in his nose down to his stomach…

Sunday, crabday, the boys went out with the boat, on a real adventure. Lost some crab pots but coughed some nice crabs.

Today, a scheduled chemo day, but all is depending on the counts. As always I try to prepare for the worst. And today I was happily surprised that Jacobs numbers were good enough to get treatment and to go to school tomorrow and Wednesday. On Thursday morning we have to come back for a blood check as his hematocrit is going down and he might need a transfusion. 

Today I also went trough the roadmap, the treatment plan with one of the providers. Like it looks now Jacob might be able to start school in January and be there during the first two weeks. Then his counts will drop, a lot. And we will be on the heavy part of that treatment. It will go on until end of February. In march he will get radiation and after that he will start maintenance, that is considered the easier part. That part of treatment will last until summer of 2014. Jacob will have monthly hospital visits where he will receive chemo, now and then he will get a back poke and he will be on daily oral chemotherapy. His immune system will be low…high enough to attend school but so low so we will still have to avoid sick people, people with a cold or cough.
I do not know what to say, but what I feel is just that it is a very very long time. a bad scary illness. 
So for all of you who ask how Jacob is doing…he is happy, but he has cancer and every day I’m scared to loose him.

sofia

Jacob was shy at school today, did not like the attention he got with the new tube in his nose. But he was happy when i picked him up, said he had a good day and learned some new things. Back home he was teaching Simon math and patters. And on a sticky note he asked me to help him write  ”I love you Simon, from Jacob”

We went in and put the ng tube in yesterday, can’t loose any more weight. And harder times are coming soon, a tough round of chemo will start in mid January.
Jacob is just the bravest boy, when placing the tube he sat by himself and did not cry, he screamed in discomfort but did as he was told. I had to look away. 
Tomorrow he will go to school, and very likely that will be the last day for him this year, I still hope he can make it back for the last week but can’t say. Friday we will go back to check numbers and see if a transfusion is needed.
David and the boys are planning to go crabbing on Sunday so we are hoping for good weather and lots of crabs.

Sofia

Yesterday was the day to go to the hospital again, Jacob went to school in the morning and then I went to pick him up at noon, he wanted to show me around so we went to the school cafeteria and he got some lunch that we had in his classroom. 
The last days he has been more tired and a bit sad. That made me more nervous when I was waiting for his labs to get back yesterday. I had also noticed he lost weight. 
It has been so nice to see him without the nose tube, I can almost pretend that he isn’t that sick… most likely we will need to put it back in on Tuesday, when he also has a scheduled red blood cell transfusion.
He hates putting it back in, so I have to prepare for a tough Tuesday.
With his numbers in my hand the anxiety went way, not because they were better than expected, but because I knew. 
Hematocrit 25.8 – will soon need transfusion
Platelets 101
Anc 1204- still good enough to do fun things over the weekend and go to school on Monday 
Creatinine 0.6 – on the higher side, has to get more hydration, drink plenty of water and check again on Tuesday.
magnesium 1.6 – on the lower side 
Weight 24.1 kg has to be over 24.5 kg or nose tube has to be placed

it is strange how these numbers and strange words have become our guidelines, how we learned to understand and to make the necessary changes in our  daily life depending on them. How we can almost predict them.
but there is always more than numbers, there is emotions, feelings and thoughts

Today Jacob got chemo too, PEG. But first we walked to his school and joined the craft fair were he and Simon made scarves  and bags.  

sofia