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A quick update on jacob.. he spiked a 39+ fever today and will stay a few days here at Childrens hospital.. we have been playing on the computers and talked about minecraft stuff all evening long.. some bruises here and there, a mouth wound to watch, bunch of small tiny dots on his arm to watch, a fever that is still not under control fully to watch.. he got tylanol before and will have to be checked again in an hour to make sure the fever is not coming back as the tylanol finishes up..

David

 

February 16

Jacob came back to the hospital today and had run out of platelets already even though he got a transfusion yesterday.. his body is not doing so well now and the chemo seems to have caught up with him and he was very sad this morning crying and hardly able to walk by himself.. it breaks my heart to see him leave like this and he wouldnt even let me take him today even though that was the deal.. I will drive out to the hospital tonight and replace Sofia so she can get a good nights sleep at home while Jacob and I hopefully can enjoy some fun with our computers.. poor little guy, I hope he will feel better really soon..

David

February 15 late

Extraordinary people.. children.. my son and cancer allies over at Children’s.. true heroes.. a bunch of ordinary children now forced into a life doing extraordinary things in extraordinary situations.. they do it without any complains or negative thoughts.. true heroes.. true fighters.. I doubt myself or most adults would be so brave and restless in the constant battle against cancer.. for days.. for weeks, months and now as we passed the 1 year, years.. today Jacob came out a 2-day infusion that was supposed to be a 3-hour chemo infusion only.. he is now upstairs and its late.. he is trying to sleep but wake up every now and then since he can’t stop cough and feel nauseous.. we placed a bucket next to his head pillow.. hoping he won’t need to use it tonight.. each time he coughs it sounds like he is about to throw up.. I ran up with a glass of ice-water.. can’t give him more zofran without asking a doctor.. the maximum daily limit has been used already.. after each cough attack he gentle goes back to sleep.. he has black circles under is eyes.. still I know tomorrow morning he will wake me up saying something like.. dad let’s build a tree house or let me show you what I build in minecraft.. I simple can’t understand how this little brave boy can be smiling, jumping, playing, laughing while.. listen to this.. close to 0 blood cells in his vanes.. the white ones 0.. and platelets and red ones almost 0, way under the lowest limit where a transfusion is needed.. so it’s like trying to run a gasoline engine on water.. and it’s not even a faraway comparison.. even the doctors wasn’t prepared for those low counts and no preparations had been made to conduct 3 infusions with that short notice.. Luckily Jacob got a nice room and mom could sleep over.. Heroes.. True heroes.. ordinary kids doing extraordinary things in extraordinary circumstances.. over and over again.. for days, weeks, months and years..

David

February 15
that day last year we got discharged from the hospital, you had difficulties walking, I was there by your side
My love
That was a good day, and today we got home again after spending one night at children’s.
Jacobs numbers are still very low and he will very likely get another transfusion within the next couple of days. 

We are almost there, at the end of the most intense part of the treatment. Just a few more weeks. 
Today they called, Jacob is now booked for a radiation consultation.  They first set up a simulation and  consultation apointment. 
They make a type of clear mask that they put over the face to keep it still, and they decide wether the child is going to be put to sleep or stay awake during the radiation.  
They will give us more information, and again we will hear about all the risks that are involved in a cranial radiation. And yes I’m scared. Scared how that will impact my little son. What parts of the brain will it affect? Will he have difficulties in school, will he have thyroid problems? what will all this treatment do to him? Will they be able to get rid of all hidden leukemia.
We just have to go on, believe things will turn out well. 

Today I have to write the same as my friend did in her text yesterday. I hate cancer.

Sofia

Happy valentines day. I’m sending lots of love to all of you, our friends and family. And I want to thank you for everything you do for us. Please keep praying for us. And don’t stop sending us your comfort and thoughts trough the web page, emails or fb. Every word means a lot.

Yesterday was Simons birthday. 
We had our traditional breakfast birthday celebration. We decorated with balloons and Simon chose a piñata.
very different from last year. I can’t help it but part of me is re-living every day from last year. Last year we were still at the hospital, our dear friends organized an amazing birthday party for simon and I took him there, dressed as princess Lelia. I remember me (leia) and Simon (startrooper ) walking down the hospital corridors. My heart bleeding, soul numb. People watching us and smiling. The old Sofia would have been embarrassed. 

Today, valentines day, last year still here, today we dropped of valentines in Jacobs class. 
Then we headed to children’s again, labs and chemo.
A four hour visit turned much longer. 
With a hematocrit of 15.5.6 (hb5.4)
Platelet less than 5
ANC 0
Jacob needed immediate blood and platelet transfusion. 
This time he dropped faster than before.
I can not understand how he can keep playing, laughing, joking and sword fighting with those low numbers. 

Looking at his numbers printed on the white paper it felt like someone wiped out all his cells, and I guess yes that is what chemotherapy does. Wipes out everything, good and bad, in it’s way. 

Sofia

Yesterday we had a planned doctors visit, when we were here on Friday Jacobs ANC was just over 200. To start treatment again it needed to be over 750 and platelets over 75. I wasn’t even hoping that his numbers would be that good. 
But the provider had good news, Jacob is recovering well, his ANC is over 1000 and platelets are also up. I almost started crying, so relieved and so amazed about how my little warrior is fighting. I thanked God.
So today we spend the whole day at children’s getting Cytarabine and cytoxan and 4hours of fluids to protect his bladder. Tomorrow he is going to sleepy room. 
We are now going to the hospital for the next four days in a row and then four days next week. Also starting on chemo at home for 14 days, then recovery and when numbers are up again radiation.
Jacob is in good mood, he still has some moodiness from the steroids and his face and belly are still swollen but he is happy. And he is still very hungry. 
Most likely his appetite will soon decrease and we will have to feed him through the tube again, but only for a few weeks. Then we can take it out, his hair will grow back and he will begin to look like any other child in his age, on the outside. Inside he will still have cancer, be under treatment for 2,5more years, have memories and experiences that most children in his age do not have, that I wish no child or patent ever needed to have or go through.