7:30 AM – Jacob wake me up as he wants to pee… I realize we both slept through an entire night without any pee breaks, medical equipment alarms or nurses/doctors coming in and out to check vitals.
Jacob wants to go for a ride in the wheel chair, I can’t believe my ears… after yesterday’s painful events and Jacob locking us out with no signs of wanting to interact, eat or even look at us he now actually communicates with me and have a wish to explore the hallways of the hospital.
Next, Jacob sit only a few minutes in the play room when he tells me he wants to eat, my mom and fiancée shows up with a gigantic burger that Jacob has no problem eating half of before going back to sleep.
The sleepiness hasn’t really changed today but Jacob doesn’t appear to be sad to the same extent as yesterday. He seems to be… just very tired.
Time for morning round and like previous mornings the doctors gathers around Jacobs’s bed as they have done so many mornings since that Thursday a week ago when we arrived to the ER of Seattle Children’s Hospital with our son vomiting blood, kidneys values 4 times higher than normal and a white blood cell count of 70 thousands per micro milliliter (the day the worst nightmare of my life started)… At least 7-8 of these highly qualified doctors all focused on Jacob talking and taking notes and planning for the next couple of procedures and name dropping vitals data I still haven’t mastered and I can’t help to think about the many Greys Anatomy episodes my wife had me watch late nights… Anyway to the good news.. JACOB HAS 0 (CERO) CANCER CELLS IN HIS BLOOD STREAM!! I can’t believe what I hear… They say that as far as they can measure there is no more cancer in Jacobs blood… 1 week since he came in full of them they are now all gone.. 1 week from 70,000 to 0 sounds super great in my ears and Jacobs’s doctor say this is a good sign and considered a good data point in determining how successful the chemo treatment has been. Tomorrow afternoon Jacob will go into the operation room where they are to check the spinal cord and bone marrow to see how successful the chemo treatment has been there. Although I realize not being able to measure cancer and actually have had eliminated cancer in all its forms in all hidden corners of the body is two totally different things. Cancer cells can hide for years and return mutated and stronger and this is the decease that has been haunting my family and close relatives for many years and I know todays happiness is a good sign but Jacob is still to go through ~3 years of heavy chemo in conjunction with one or more radiation treatments and possible bone marrow transplantations, meds, etc.
Jacob sleeps 95% of the time all day until afternoon when his best buddy Hjalte shows up. Jacob is from that moments lying with his eyes opened and watch his friend play with Lego. After a while Sofia and Simon shows up in the room and Jacob’s eyes starts showing signs of tears and he has clearly missed the other half of our family that slept in the house tonight. Its true a family has to stay together to be strong, the next couple of years this will be more importantly than ever for us.
On a side note we have meet a couple of fantastic people that has gone through so much pain, just like us and I admire the strength I see in these people. I am sure I will grow mentally over the next few months so I can be there for my family and provide the support they.
Today we also started to sign the needed paper work to prepare for harvest, test and storage of Lucas stem cells for the unlikely/unthinkable scenario that Jacob’s DNA tests that will come back in a few days presents some really bad news. We would then need stem cells to repair Jacobs’s core blood producing system and also keep them around long term in case for any future relapses.
We also need to prepare testing Simon for a bone marrow match as each sibling has a 25% chance to be a perfect match and if Lucas isn’t our hope goes to little Simon.
Today I practiced how to take Jacobs pulse and learned what trends I should be alert for. I do this since I know there is a day when we will take Jacob home and part of his treatment will have to be from home and I would then need to watch over my son. I started to check online for buying a stethoscope and learned there is a whole industry selling these and I have to ask my doctors friends what brand is needed or if I should buy one of these electronic devices that can sound an alarm when certain thresholds are being passed.
The search for health plans for Jacob who is classified child with pre-existing condition has started. Although I have my family covered 100% through my employer today I can’t help to feel it’s my obligation to ensure Jacob has his own coverage not tied to me as no one can predict the future and Jacob needs a 100% coverage over the next ~20 years or so or whatever the relapse risk time frame is.
Cleaning service for our house to protect Jacob’s low immune system when Sofia will carry around our new born is also something needed to be setup. I also been told we should be careful bringing Jacob to malls or grocery stores and also clean all fruit carefully before cutting it with knife as bacteria’s can be brought into the fruit else. Also the nurses has been good at reminding me a burger lying on a table for a few hours should be thrown out and not put back in the refrigerator for later use (Jacob has had a lot of burgers sitting uneaten the last few days).
David is signing out… for the first time since last Thursday I feel there is hope.
Link to todays photos and videos: http://www.flickr.com/photos/36414830@N02/sets/72157625897899605/