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When I left the house this morning I had a bag with clothes with me in case we had to stay over night, I tried to prepared for the worst. Today’s results are better than yesterdays, we are focusing on the kidneys as apparently the liver function was not anything they worried about.
Because of Jacobs kidney history this was a significant change. The focus is on the creatinine as the BUN often gets high when being on steroids. the creatinine went down from 0.9 to 0.7 and we want it on 0.3. An ultrasound was made that did not show any abnormalities, one kidney is still a bit enlarged but they seem to be working fine.
They think what has caused this is dehydration. So now Jacob has to be on full ng feeding even if he is eating well to prevent him from getting dehydrated. We are also going back tomorrow to get more IV fluids and likely he will get more IV fluids even in the future when he gets more chemotherapy.

Exhausting day

Sofia

Today’s labs did not come out as expected, Jacobs liver and kidney values got higher, his creatinine is up to 0,9 and BUN 29. 
They need to come down, to normalize, we are going back tomorrow to see if anything has changed during the night, hopefully it has. If not he will need IV fluids and close fallow up, likely we will then have to stay.

So, please pray for that his values normalize during this night.
Pray for strength

I’m scared, things have been going the right direction for a while now, Jacob has been in great mood, the brothers have had so much fun together. I want it to continue that way.

Sofia

The last weeks Jacob has been so positive and happy. when he got on the steroids a week ago I was so worried that he will become angry and irritated but instead he has been helpful and sweet and he still wants to eat all the time, he is so cute when he asks for food. We had to go to Costco the other day to get him what he wanted, lamb, different types of fish, steak and he wanted to try everything they had there. it is so strange from having him on full ng feeding to now being a bit worried that he will overeat, the doctor though ensured that it is fine that he eats even if it is a lot. Todays breakfast was two plates of meat sause:) Yesterday he basically made our dinner, fish fillets in foil with all kinds of herbs that David then put on the grill. We also went to our friend’s garage sale in the neighborhood and the boys now want us to arrange one too…they have been labeling toys and asking us what items we want to sell…

Last Friday we had a chemo appointment again, he got doxorubicin and vincristine in his port. Jacobs’s blood counts are good at the moment but his kidney and liver values were a bit higher than usually, it might be because of the steroids but we are going back on Monday to check them again. I got a little bit disappointed as this doctor said that this phase is often very hard for the kids…he actually said that it is as hard as the very first. But as Jacob if feeling better than he did back then it will not be that bad, but his immune system will get very low soon and if he then catches a cold he has to be hospitalized.

we also got the worrisome news that the port Jacob has has a manufactural defect, that is why it came loose the first time. There has been 3 out of 63 cases where it has happened so the risk for it to happen again is still low but it is there.

Please pray for

Kidney and liver number to normalize
Jacob to continue to feel great and for colds to stay away
For the whole family to stay strong and healthy

Sofia

Today we went in to children’s hospital to get a back poke, methotraxate in the spine, and some more IV chemo. Everything went well and Jacob looked forward to the sleepy room, it is strange but they say kids really start to like that feeling of relaxation. I’m always a bit nervous, seeing Jacob laying there with oncologists and anesthesiologists around him, all the strange equipment and then having to leave the room when he falls asleep. It is awkward sitting on the other side of the door, trying to get a feeling for if everything is going well or something is wrong by listening to the noises. Luckily it is a short procedure. Today though Jacob was upset for an hour after, he wanted to go back to sleep, wanted them to redo the procedure as it in his mind only took a second. The steroids he has been taking twice a day for a couple of days are now kicking in. Feels like I’m training for how it will be to have a teenager…The steroids are also making him restless, he couldn’t figure out what to do or play with his afternoon and usually he is so good at entertaining himself or playing with Simon. Good thing was all boys had lots of fun cooking with dad as they made Jacobs favorite dish, pelmeni.

Sofia

We spent the last week out on the boat, Roche harbor, one of our favorite places. Jacobs’s counts were too low last Friday so we could not start his treatment. I felt a bit disappointed, for some reason I was so sure it would start, but obviously it is impossible to predict the numbers. Instead we cleaned the boat and headed out to Anacortes and Roche harbor. It is beautiful out here. A bit too far from the hospital but so needed…every second I do not think about the illness makes me re-charge.

A cute girl asked me what is wrong with that boy’s nose. And I explained that he is ill and gets lots of medicine and sometimes food through that tube, it is nothing contagious though. Oh she said, I know my brother has diabetes… I love the way children look at the world, the life.

Simon to Jacob: Jacob, you are the nicest on the planet.

Simon looks at the crab we just caught and cracked in two, and say “Jacob, the crab did not become an angel, he is still here…”

Lady of good voyage, Roche harbor
A Perfect day, sun, water, boat, morning coffee…Jacob and Simon are playing, Lucas too. Simon and I take a walk and we buy ice cream. Why can’t I get that feeling that I usually get when we come here, feel the peace, the beauty? I know the answer but I rather pretend not to. Try to live in the image of perfection, family out on their boat, happy…

No one can see that behind everything leukemia is hiding, destroying the picture, poisoning our lives. But we make our best to live as happy as possible, enjoying as much as we can, determined to live on a day at the time. I pass by the old white church, decide to go in, light a candle, its red, makes me think of Jacobs’s sick blood. When I go outside I see the sign, Our Lady of Good Voyage Chapel, well I think, good voyage then, life goes on.

I put my sun glasses back on to make the colors a little bit deeper, hoping that will help me see the beauty of life.

Some more photos here: http://www.flickr.com/photos/36414830@N02/sets/72157627464021988/

 

Sofia

Roche Harbor 089

I know some of you try to read my Swedish blog, you are welcome to, I’m sorry I’m not writing everything in english it’s not that I do not want you to know how I feel, it’s just easier. When I have been asked in witch language I dream or think in I would say Swedish, sometimes it happens in Greek, as there are words that are more expressive and deep, but Swedish is my main language. So if I would write my thoughts in English it would not be straight from the heart but heart via the brain… When I have been here long enough and start to write too much swenglish I might switch over.
I tried google translate on my blog, and it is really bad, I laughed, could read some of it but it is not good, maybe it’s good then it is not so sad to read…

We went to the hospital yesterday for labs, they thought Jacobs counts might be going down after the high dose he got, and if they do we should hold the chemo we give him at home. But his counts are going up, it feels great that he is recovering and that we can continue giving him chemo at home. Also on Friday he wil most likely start the next cycle, delayed intensification. 4th page on the roadmap, 7pages in total, pages filled with chemo, different types given in different ways. Orally, Intravenous, intramuscular, intrathecal…and after that radiation…and then about two years of oral chemo at home and hospital visits once a month…

Today Jacob and Simon have been playing computer games for way too long, but I can’t ask them to quit, not when I hear Jacobs giggling laugh and Simons silly comments…that laugh is healing for me and for him too I believe…

The two las nights have had dreams filled with anxiety, so please pray for them to disappear so I can get a good nights sleep.

…There is a reason why there is clear eyes and dark sun glasses, it’s for people like me, who cries often but you never see it…

Sofia

Last weekend was all about high dose chemo and beeping hospital machines and not much fun to do for Jacob the four days he was admitted. This weekend we spent out on the boat and enjoyed the Seattle Sea fair and the great weather. Jacob really enjoyed sleeping on the boat and has been laughing a lot.

Seattle 137

More photos here: http://www.flickr.com/photos/36414830@N02/sets/72157627259172299/