We had a wonderful Easter weekend together, the whole family, meeting up with friends
Going to egg hunts with the boys. Seeing them laughing and running. It felt almost normal. I was part of the real world, Jacob was feeling better than ever. In this moments, with laughter and sunshine I could stilling feel a pain in my heart. Like I could not believe or maybe I knew that I had to be prepared, that something more was coming. Or it is something that will forever follow me, the worry that any time, in the best of times something bad can happen, your child. I hate that feeling. But it makes me more aware of the moment, we have to live in the moment of beauty. 
I have been screaming to God, asking why, telling him I had enough. Asking him to heal Jacob

So please say a prayer for Jacob, for his lung to heal, for the leukemia to stay away forever
Pray for strength for me and David

On the evening of Easter, after all the fun and sunshine, Jacob started to complain about chest pain in the left lung and difficulty breathing.
David drove him to the emergency room and X-rays and ct scans were done. They showed that the infection in his lung had start to grow, and is now worse than ever. It takes up about one fourth of Jacobs lung and there is also some fluid.  

Doctors think the reason for this is that Jacob has been on a too low dose of anti fundal medicine. They added one more anti fungal and he is now getting them iv and they are discussing how we are going to proceed. 
Another X-ray was done yesterday to look at the fluid and an ultrasound will be done today to decide if it is a big enough amount of fluid for them to do a thoracentesis, a procedure where they with a needle take out the fluid to get a better understanding of what is in there. 
One of Jacobs chemotherapy treatments will be skipped for this month as it is more important now to get on top of the fungal infection, that we are still assuming is the cause of all this as no proof of it has been shown on either the broncoscopy or the biopsy from before.

Clinically Jacob is doing well, no fevers, just a bad cough…
we have been to the playroom, having a coffee at Starbucks and playing his games.
Soon off to the playroom again to check out today’s activities.

Right now we do not know for how long we will have to stay. At least a couple of more days. Until we have enough data and a plan on how much and what type of medicines we need to give.

Sofia 

Today we didn’t get our questions answered about what is causing Jacobs lung to be infected.. Doctors are not sure if it’s Jacobs own immune system attacking himself, or if it’s an inflammation, infection or something else.. They have scheduled another CT-scan this Friday as they need more data before giving Jacob a diagnose.. Sofia and I are very scared and feel we have had enough with the one diagnose of cancer and don’t need one more to add on top of it.. Doctors indicates that problems with the lungs can be serious and slow and hard to treat.. One of the treatments is in direct conflict with Jacobs cancer treatment so we need some positive news soon. We hope to get some preliminary answers this Friday and on Tuesday all Doctors would have met and hopefully can provide a diagnose. Help

Immune system is still zero. We will wait one more week and give it another try. Bone marrow is slowly recovering and have started to produce platelets and red blood cells. Jacob took medicine orally today for the first time since he voluntarily pulled out his nose tube the other day, he mixed it with ice cream and after a few attempts he finally accepted and got his antibiotics. Sofia and I are right now out on a date enjoying good music and drinks downtown Bellevue, Joey’s. Cousin Thomas who is in town is babysitter and our hero. / D + S = forever

Jacobs ANC is still high enough for him to continue school a few more days with a few breaks for going into clinic for blood check-ups and potentially a blood transfusion coming up to keep him awake. At school Jacob don’t participate in the recesses as other children but is very pleased about his special seat in the school library where they let him sit and play math games on a computer in between classes. Jacob is very happy about this arrangement and proudly showed Sofia his little private spot yesterday. Hang in there little Jake.. Kick cancers butt!

We went to the hospital on monday to see if we could start Jacobs treatment, and yes his counts were high enough. That was relieving, he got his back poke and the following day we had a long infusion day. Now some shorter infusion days will follow this and next week. 
Today was another good school day, when i picked up Jacob he looked so happy, he told me he had a good day at school and that his favorite subject is math, math is even more fun than terraria or minecraft he said. Math is the funniest thing that exists! 
Last days have been busy but good, both boys have been going to school and after that we had hospital visits vith chemo infusions. 
Other people are busy with driving their children to activities or sports, we have our activity, a little bit different, the chemo activity.

Thank you for keeping us in your thoughts and prayers

solen skiner mina barn leker på ängen med morfar, de jagar bumerangen,
springer och skrattar. För en sekund är allt normalt, Jacobs keps flyger iväg
han skrattar och springer vidare, jag ser hans kala huvud och det skär i
hjärtat.

våra dagar styrs utav de vita krigarna, immunförsvaret, vi vill inte ta
några onödiga risker men vi måste få leva, barnen måste få vara barn, men det är
en balansgång.

Hur många vita krigare har jag idag mamma?
29.
Jaha då kan jag inte gå på restaurang.

över 40000 onda krigare hade du min kärlek när du fick din diagnos, sjuka
celler som tog över och tog all plats i din lilla kropp, de klumpade ihop sig
till en arme i bäckenet, som trängde ut de röda och gjorde dig trött, du hade
ont, de trängde bort allt gott.

nu är det krig i din kropp de onda ska bort, men det tar tid, väldigt lång
smärtsam tid. Du mitt lilla barn, en stor krigare.
jag skäms, har aldrig tidigare skänkt er en tanke, alla ni kämpande barn
jag nu möter så ofta. små liv, ni liknar avatarer, kala huvuden, ibland har jag
svårt att se er i ögonen er blick bränner i hjärtat, ni borde beskyddas, vi
följer, vi ber och vi hoppas att ni ska vinna detta krig. Ni går med höjda
huvuden, ni fruktar inte livet men heller inte döden, vi beundrar er, älskar er.
Vi sörjer, vi andas, tillsammans går vi vidare.

Upplagd av sofiaschaub

Jacob is still in a surprisingly good mood and we cherish every single day as we know the “good times” will soon end and within a week or so Jacob is likely to start showing signs of increased pain, nausea and tiredness, all things that his Doctors has prepared us for. I can’t help to feel scared for how Jacob will feel and how we will react to this. Sofia had a horrible nightmare yesterday and felt very bad about it half day today as the dream involved her also being sick with cancer and she described to me how she felt she was about to die with her son side by side before actually waking up realizing in a somewhat guilty way her worst nightmare was in fact Jacob current reality, with the exception he is far from doomed and has good chances to beat this beast (~80% in his case). I read somewhere that in UK the same diagnose would have meant a ~70% change of survival due to longer wait times in the medical system and also with greater distance to the US based research that is happening here, so in a way I have to say things could be worse and I am somewhat fortunate to have relocated to US right in time with great health care coverage provided by my employer to help Jacob get the best Doctors there is.

Although I get my fair moments with Jacob each evening after work I do have some trouble reaching out to him in the way I really would want to and each time I try and get a hug or kiss he respond with a fist and some sort of vocal rejection (unless I offer to play LEGO or something with him which is what I end up doing from time to time to get some “quality” time with my son). Doctors say it’s a very normal reaction that sick children pick one parent over the other, I can still see in his eyes that he knows he is loved and with the smile he present to me in conjunction with his furious fist I know he loves me back. Compared to the early days of his treatment when he was taking steroids his current mood swings is considered nothing.

Up until now Jacob has only got chemo treatment once a week… As he now starts his second phase (9 months) his actual chemo dose has been bumped up to 7 days a week where 5 of them will take place at the hospital we will also continue to give him chemo orally throughout the day from home. In his second phase day 1 to 64 is going to be hard, so hard that Jacob will from time to time get temporary hospitalized a few days. Then after day 64 things are apparently supposed to get even worse and include very aggressive chemo from time to time provided through up to 12 hours infusions where Jacob has to be hospitalized and put under close 24 hour surveillance as his critical body functions and organs will have to be monitored at all times.

Jacob starts to ask us a lot of questions about his sickness and wants us to explain exactly what cancer is, what the difference between his cancer and other people’s cancer, how his chemo medicine works and what the negative side effects will be. We basically present things for Jacob in the order things starts to show or we know are just around the corner for him. This week he started to fumble around more than usual and falling more often which is because his nerve system in his legs is temporary shutting down and the classic “knee effect” is no longer working, you know when a Doctor takes a rubber hammer and hit your leg at your local clinic “for no good reason”.

Some new video clips: http://www.flickr.com/photos/36414830@N02/sets/72157626173397211/