Suddenly Easter was here and nothing was prepared, what happened to egg painting, decorations and Easter baskets? Again I have to thank my friends and neighbors.

As Jacob has just started his chemo his counts are still ok and that made it possible for us to go to our friends house for a nice Easter lunch and egg hunt.

After the 7 hour chemo visit at the hospital on Saturday we are able to spend some time outside in the fantastic spring weather.

A few days ago I started to go through my mails from when Jacob first got his diagnose, thank you everyone who wrote to us, it means a lot to know that you are thinking of us and I would love you to keep writing in the guestbook.

Next days will be busy, we will go back and forth to the hospital now for the next 9 days.

Sofia

photos http://www.flickr.com/photos/36414830@N02/sets/72157626456209777

Today was a great day, we went to Jacobs friend Hjaltes house, they played wii, jumped on the trampoline, played fight and watched tom and jerry. It was almost like before the cancer, except for his bald head, nose tube and that he is now much more careful than before. Simon was very protective he wanted to protect Jacob so no one would rip out his tube by mistake…

My mom has now been here two days and Jacob and Simon are enjoying her company.

Jacobs EKG from last week was normal, that is a big relief as the two earlier ones showed that something was going on with his electrolytes.
Night feeding through his tube is working great, he has also got back some of his appetite and today he really enjoyed the Danish lunch We had at Henriettes house.

here are some pictures of Jacob and Hjalte:

http://www.flickr.com/photos/36414830@N02/sets/72157626419363495/

Chemo has to be postponed as Jacobs counts are not high enough. Next round will start sometime in the end of next week, he is recovering though, ANC was today at 447 so the bone marrow is working. His magnesium is still low. Jacob also had an EKG done today to check on the heart as the low magnesium and chemo can impact heart function. Today we got the feeding machine and Jacob is now hooked up to it for twelve hours during the night. He thought it was a bit unconfortable in the beginning, but he will get used to it, let’s hope it will not upset his stomach too much now in the beginning.

We had some lovely people over today that cleaned our house, millions of thank you to you! And I also want to thank everyone who has or is bringing us dinner and helping in all other practical ways, I do not know what I would do without you.

Yesterday Jacob had his teacher here and they had two hours of school. He had been waiting for her the whole morning and really enjoyed her visit. I’m so happy he can have some home schooling. But I also felt so sad when I drove by the school and saw the children playing and the school busses waiting. I miss taking him to school, I miss waiting for him at the bus stop, I miss the crazy mornings when everyone has to get ready. Sometimes I miss all those ordinary normal things that we do not do anymore.

Please pray for

Jacobs magnesium levels
Strength to the whole family
Me, Sofia, to not have more nightmares

Now we are waiting again for Jacobs body to recover, his white blood cell count must be over 750 and his platelets over 75 to be able to start the next chemo phase. Yesterday when we checked his counts his wbc/anc was 41, it has never been lower. But platelets were 395. This indicates that the bone marrow is recovering but it started with producing platelets and will hopefully soon make more white healthy blood cells. Jacobs’s magnesium level went down again so he had to get magnesium through his IV port. Yesterday Jacob also had to get a new nose tube; it came out the day before when Jacob and Simon were playing “fight” as they called it, Simon grabbed the tube by mistake when he fell. Jacob got terrified when he realized what had happened as he remembered how uncomfortable it was to put in. But again, he was so brave. Today we met with the nutritionist as Jacobs appetite has decreased and he started to lose some weight. He will start on some nose tube feeding on Friday. It is a little machine that we hook up to his tube and that will pump in a formula for some hours during the night. He will get about half of his needed calorie intake that way and hopefully be able to gain some weight.

Please pray for
Jacobs’s body to recover fast
Magnesium to stabilize

Thank for
Jacob not catching a cold
being so mentally strong

I also wanted to mention that I do not know who the owner of the air cleaner left at our house is, I know someone let us borrow that until ours came but no one has claimed it yet, so please give me a call so you can get it back:) And also if you have plates that are yours you are welcome to come and get them back. And a ladder in our garage was also left when we cleaned the house.

new photos and video clips http://www.flickr.com/photos/36414830@N02/sets/72157626363514219/

Today Jacob had to get a blood transfusion as the chemotherapy he has been having the last two weeks has kicked in, all his blood levels are low and he will probably also have a platelet transfusion on Monday. His ANC (white blood cells/ immune system) is as low as 78. Normal is between 3000-7000. Under 500 he cannot be in crows and less than 200 is considered as 0. If he gets a fever or starts coughing now he will get hospitalized. His magnesium levels were better today and his blood pressure is also more stable now when he is on the medicine.

It is strange, how sedated procedures, chemotherapy as, transfusions and pokes can become a daily part of your life. Days at the hospitals are exhausting, I’m happy I had my friend Karin here to keep me company and play with Jacob and Simon. Hanging out in the hospital with a good friend and coffee is not that bad after all. And I don’t know what we would have done without Jacobs iPad, he loves it and makes the long days pass quickly, he already finished all angry bird levels, and he is now into all the math apps- a great way to practice his math skills

Jacob has not been that nauseous that I expected, and he is still eating well. Taste and smell is changing so it is difficult to know what he wants to eat. Favorite food changes every day but I’m happy he likes to try new things and he thinks it is a bit funny that today he had a cherry lollipop and he loved it because usually he hates the taste of cherry. Jacob has been feeling surprisingly well during this chemotherapy face. Seeing him jumping around, playing kinect and sword fighting with Simon is so relieving.

I have to say I have a very wise 6 year old. Every evening since his diagnose before we go to bed I ask Jacob about the best part of his day. That way I hope to help him process the day and we also have some nice conversations. Yesterday when I asked him he said it was to go to the hospital. I wondered what in the visit and he said that it was to get the two pokes in his legs?! I was very confused so he explained “mom it is good that I get those pokes because the medicine will make me healthy”  

It is heart breaking to think that the best part of a childs day is to get chemotherapy but at the same time it is so amazing to see how he adjusts and accepts this new situation. He is getting better and stronger. He is the bravest.

Please pray for

 Jacobs blood counts to recover quickly

Continuing to eat well

Magnesium level and blood pressure