Jon's having an excellent time in Arizon and eating Howard and Kay out of house and home. His weight was down to 160 so he needs every calorie he can get.
I am using my time to get caught up at work and spending time with all of my girlfriends that I have been neglecting since Jon was diagnosed.

Jon continues to feel better than he has in months. I really think the appetite stimulant has been helpful, (megesterol not pot!) he is eating well and regaining his strength.

We drove to Seattle in the snow early this morning for a blood draw and follow up appointment with Dr. Lin. His blood work was all good and his calcium levels were normal. Dr. Lin was able to graph the calcium levels since late January and determined that they were already on the rise throughout February. He concluded that the hypercalcemia was from the hormones produced by the tumors as Jon had been out of treatment since December and the protocol he had received was ineffective. As a result Dr. Lin would like to retry the Xyloda and Celebrex telling us that there has never been a case of hypercalcemia reported with those medications but to proceed cautiously. This makes me a bit uneasy but Jon is still in his "guns blazing" mode and wants to start asap.

During our drive this morning Jon was lamenting that he wanted to go outside but couldn't take the cold weather and thought he would take a trip to a warmer climate. We brainstormed on some destinations and finally concluded that a visit to Howard and Kay Brown in Arizona was his best and most enjoyable option. He left this evening on Alaska Airlines and has arrived moments ago. It will be good for him to have some time with his extended family and enjoy the sun and warmth. Staci may be coming over to visit with him as well. I expect him back by mid-week and Dr. Lin wants him to hold off on the Xyolda til he's back and do a follow up appointment after he's completed a week of the oral chemotherapy.

Jon awoke this morning and said this is the best he's felt in as long as he can remember!

I had an absolutely wonderful day with Wyatt. He is a sweet, happy baby and a joy to be around. He is laughing, smiling and becoming very active. We really don't have much of a routine yet so we just played the entire day by ear. Ericka came over around 4 to pick him up and we were having such a nice visit we decided to do our grocery shopping and have dinner together. Levi called after his Tuesday night class, around 9:30, wondering where his family was. I told him I had kidnapped them and wasn't giving them back...he didn't even laugh!

Jon did fairly well today. He ate a good breakfast, worked at his desk in the morning then had a massage at my office this afternoon. He called me afterward saying he had run into his friend, Brian, and they were going out to dinner. It's 10:30 and he just got home. That is more than he's done in weeks.

We have a blood draw and appointment with Dr. Lin Thursday at 7:30 am. From there we will strategize further treatment options.

Jon was released from the hospital today and I was able to take an extra long lunch to pick him up and get him home (thank goodness for Dr. Gagnon!) He is still extremely weak and tired but declined the wheelchair and managed to walk to the car. When I got him home I gave him a nice long bath with the extra special soaps Staci had made and a skin brushing. He both enjoyed and appreciated it, saying its nice to have a few moments of time when something actually feels good. It was sweet and sad all at the same time.

I'm just leaving work and am on my way to pick up Wyatt.

Jon was in good spirits when I returned to the hospital last night. He was relentlessly teasing the nurse so he's getting back to his usual self. He ate a big dinner of pot roast, mashed potatoes and veggies with some ice cream for dessert. That's the most I've seen him eat since before I went to Miami. We talked all evening and he seemed just about normal. The nurse removed his IV and they are starting him on oral meds instead of IV. He should come home tomorrow.

Tonight/tomorrow are my first official babysitting days with Wyatt. It will be a nice welcome home for Jon to have his grandson waiting!

Jon just called me to ask me to bring a few things back to the hospital. He sounds pretty slurry again. He said, "Doc, are they sure I didn't have a stroke?" I said "Yes, I checked you for that when I got home from Miami and that's why I didn't make you got to the ER. The doctors here have also ruled that out." He replied "How could anyone possible be this stupid?" It's frustrating for him when he's used to being so sharp and it makes us all sad. Dan was just saying yesterday how much he misses their conversations since this has all started. I have to agree, its been nice last night and today to have a few of our usual talks when he is coherent.

Jon's calcium levels are now within the normal range. He still goes through episodes of confusion but they are definitely much less. He ate a fairly good breakfast but has some nausea afterword. The nurse gave him reglan for nausea and delauded for pain so he is now napping while I go home and shower, take care of some work and have dinner with Kelsey. I will be heading back for the evening.

Jon is awake, coherent, and hungry. I just ordered him breakfast and afterward the doctor wants us to go for a walk around the wing. He still a little loopy but can hold a conversation without saying too many inappropriate things (that's not much different than his usual self!) We are still awaiting the results of the paracentesis and this mornings calcium levels but they have started the antibiotics.
He will be here a few more days until they isolate the cause of the infection and get him on a narrower-scope antibiotic. Looks like he might get out Tuesday.

Jon's blood calcium is now down to 11 (10 is normal) and he just had a 90% lucid conversation with the doctor. In addition to the calcium problem his bloodwork disclosed an infection that they suspect is coming from the fluid in his belly. They are about to perform a pericentesis to extract the fluid and send to the lab for testing. Next he will start on antibiotics. The doctor suspects that this has also contributed to his disorientation and confusion. He is resting comfortably.

I'm back at UWMC and Jon is still sleeping 90% of the time. He did answer his phone and has conversed a little since I've been here. His eyes even lit up a bit when I told him gold has hit $1000 an ounce this week as he has holdings in a gold company :)

His calcium levels are slowly coming down. It started at 15 and is now down to 12.5. He needs to be in the 8-10 range before the confusion subsides and they let him go home. He still isn't eating much and they gave him Megesterol to increase his appetite but it hasn't helped yet (they also suggested marijuana but somehow I just can't imagine Jon with a bong!). The parathyroid tests were run this morning as well as some blood and urine cultures as he briefly spiked a fever during the night. No results yet. I spoke to the doctor at length last night and he agreed that it was unlikely that the cancer has spread to his bones and it is probably the hormonal imbalance cause by the tumor and liver damage. So far no scans have been ordered and I am awaiting my meeting with the doctor this afternoon.

Jon and I are here at the UW, Dan just left for the night. Its been a long day for everyone. I had a chance to speak with one of the doctors and he explained a little more about the elevated calcium. There are two possibilities; 1. the tumors or the liver are producing hormones that effect his parathyroid gland which in turn controls the amount of calcium in his blood or 2. the cancer has spread to his bones and the calcium is being released into the blood stream from the bone damage. Based upon what I've seen so far I would go with option #1. In all the scans there has never been cancer in his bones and we already know his AFP is elevated from the tumors in the liver which would support the hormone theory. The doctors are still debating on what tests to order but it will probably be a bone scan and/or parathyroid tests. Jon is currently receiving IV saline to dilute the calcium and it has dropped one point since this morning. They will be able to treat the hormone issue with medication once they determine the cause. We will no more tomorrow and it is expected that Jon will be released on Sunday. He does seem slightly better tonight, at least talking a little bit and I got a wink when I arrived, but he still is confused and exhausted. The doctors believe that the confusion is secondary to the elevated calcium.

There has been some discussion among the immediate family about whether or not Jon wants to continue to fight cancer. Anyone who has witnessed all that he has endured could completely understand if he would want to give up after 2 1/2 years of this. Levi and I had talked a few days ago about trying to broach this subject with him when he was more coherent so that we could continue to exercise his wishes. When Jon saw Dr. Lin last week Levi said he told the doctor that if he was going down he wanted to go "guns blazing". He repeated those sentiments today several time to Dan and the doctors so we all feel confident that he is still in the fight. I have always deferred to Jon's wishes in this battle, if he wants to fight 500% then I'm right there with him, but if he ever gets to the point that he's tired and fed-up then I will support that decision as well. It was nice, however, to receive confirmation that the old Jon is still in there, continuing the fight.

Jon saw Dr Lin today and had his bloodwork done. His calcium levels are elevated and he remains exhausted and still somewhat confused. The doctors decided to admit him to UWMC for further testing rather than have us haul him around to a bunch of different doctors for a variety of tests. Dan took him to the appointment today and he is taking him to the hospital for admission. He did an excellent job of asking my list of questions, reviewing the list of meds, taking notes from the doctor and calling me with all the information while I was at work which I appreciate immensely. I will be heading up tonight after work.

Jon had a slightly better day today. He is still exhausted but much less confused and disoriented. He ate small frequent meals and I managed to get him in the tub, bathed, shaved and dressed in clean clothes. He will have bloodwork done tomorrow and then an office visit with Dr. Lin. He is off all chemo until then and resting comfortably

Jon had another rough day yesterday. When I was changing planes in Chicago I called him and he sounded delirious and confused. He and Staci were returning from the accountant and I really couldn't understand much of what he was saying. When I talked to Staci she said that he had been like that all morning and that when she first checked on him that day he was already up and had taken his meds himself (with no food of course). She tried to get him to eat but it sounds like he couldn't get very much down. We called Dr. Linn and he instructed Staci to bring Jon to the UW but Jon refused. The doctor felt that the confusion could be from his new medication that Jon might have taken incorrectly but they wanted to do a brain scan to make sure there were no other causes for concern. Kelsey and I got home at 6:30 and Dan was here with Jon while Staci on her way to the airport with Levi. They all tried to get Jon to go to the hospital but he wasn't having any of it. I talked to the nurse and she said if he was comfortable and becoming less confused I could wait until today. When I finally saw him and was able to assess the situation he was only mildly confused, he knew his name, birthday, today's date and even that Obama was president. Neurological testing (pupils, reflexes, cranial nerves) was also negative so I felt it was safe to let him sleep it off. Dr. Lin also did not want Jon to take anymore Xoloda until the confusion passed but Jon was insistent on taking it. Fortunately Staci had moved the Xyloda into another bathroom and Dan hid the rest of his meds. Jon agreed to not take anything else without someone assisting him but he was really pissed off that I wouldn't give him any more Xyloda.

In the middle of the night he awoke in excruciating pain. It took two oxycodone to calm him down and enable him to sleep. He is currently still asleep and I am waiting until the doctor gets in at 8am to formulate a plan. Jon is sick of hospitals, poking and prodding. I certainly don't blame him for that, the poor guy has been through hell. He also doesn't feel that there is anything the hospital can do for him but I'm not sure I agree at this point. We'll see what Dr. Lin has to say.

I feel badly that Jon has such a rough time the past two days while I was gone but I also feel that if I can't do the things to maintain mine (and Kelsey's) sanity I won't be much good to take care of Jon. The older I've become the more I have come to appreciate how amazing my family is. They are kind, generous, loving and hysterically funny. It was the best medicine for Kelsey and I to be surrounded by them and I feel that my strength has been renewed to continue this battle. I also appreciate everyone in Jon's family pitching in and taking care of him in my absence, especially Staci, Levi, Ericka, Dan, Tony and Tonya on this particular episode. Special thanks also to Dave Leonard for lifting Jon's spirits on his visit.

I spoke to Jon yesterday and he was absoluely miserable. He started new medications and felt exhausted and nausous, staying in bed all day. I was able to contact Dr Lins nurse to inquire about his meds, she advised us on the correct dosages and made sure Jon was eating the appropriate amount of foods with the xyloda. Staci fixed Jon dinner and made sure he ate before giving him his last dose for the day. Hopefully he'll feel better this morning. Kelsey and I will be home tonight.

Jon says Dave is taking excellent care of him in my absence...not too much and not too little. They spent yesterday driving around to sporting goods store and trading hunting stories. Dave drove and when Jon was tired he slept in the truck. It's been therapeutic for Jon to have some interaction with friends who share his common interests and previous lifestyle. Thanks, Dave!

Nice addition to the blog, Levi. Thank you.

Jon had his CT scan and follow up appointment with Dr. Lin today. Levi escorted him rather then Tony and I have to say the two of them are not the best historians. From what I can decipher it appears that the tumors in the liver have not increased in size however there are more tumors in the lungs. Jon tells me that the entire right lobe of his liver is dead, however the left lobe has increased in size. I asked him if that meant the tumors were dead as well as the liver tissue and he responded "You'll have to ask someone smarter than me." Dr. Lin did dictated a report with a cc to me so someday I will know the answer. I also need to request a copy of the scan since the guys forgot that, too. I might have to fire them.

Dr. Lin started Jon on Xoloda (oral chemo) and two other meds (don't know what or why). The plan is to continue to keep the cancer at bay until Jon is strong enough to undergo more IV chemo. He remains extremely weak, thin and tired.

Kelsey and I leave tomorrow for Miami for much needed time with my family. Dave Leonard arrives tomorrow to stay with Jon and Staci arrives Sunday to take over. Kels and I will be back on Wednesday.

Another long and emotionally draining day, however, I FINALLY GOT A CALL BACK FROM UWMC. A real person with a direct line who actually answers her phone. Her name is Michelle and she promised me a scan for Jon and a follow up appointment with Dr. Lin this coming Thursday. Kelsey and I are working in Olympia that day so my brother-in-law, Tony will take Jon to the appointment (Thank you, Tony!)

I also received a call from Dr. Paul Reilly, the naturopath at SCTWC. We discussed the recent turn of events and he assured me that he will smooth Dr. Chen's ruffled feathers so that Jon can have Dr. Lin as him primary oncologist at UWMC but receive metronomic chemo of the new cocktail at SCTWC in Renton. These are Jon's wishes and I wasn't sure I'd be able to make it happen alone. Jon will continue with Dr. Reilly as well as the acupuncture with Darren and Candace.

We also attempted to celebrate Valentines Day today as I will be gone on Saturday. We made it to the movies (Slumdog Millionaire), a homeowners meeting for his Lakewood property and dinner at the Olive Garden. Jon's energy ebbs and flows, he did well at the homeowners meeting but ate dinner with his head on the table. At least he's eating now and hopefully will start to put on a little weight. He was 161 today and still carrying around a small belly full of fluid.

I call UW 5 times a day to get the next scan scheduled to no avail. This is getting extremely frustrating!

Jon remains tired most of the time. He probably sleeps about 18 hours a day and is able to get up and go out every other day or so. On Friday he had another endoscope to check on the esophageal varices. There were four additional ones that were repaired before they could bleed. Dan took him to the appointment and he slept all evening and into the night. His ascites is better, especially in his legs and feet, but he still has some abdominal swelling and generalized body pain.

I talk to Dr. Lin's office every day and am jumping through all of the hoops to get Jon scheduled for the next scan.

Today Levi took Jon to the Duck Club to retrieve his supplies. It was good they had some time together. Kelsey and I went to a Student Legislation Day at Bill Gates former high school. Kelsey is a member of the Sumner Student Congress and acted as a lobbyist for this event. It has been extremely difficult to maintain any kind of normal life these days and I was grateful for the time to chaperon this event. Kelsey has been an incredible help for the past several months, doing everything from cleaning up Jon's vomit to cleaning up the dinner dishes. On top of that he's managed to keep a 3.5 in the International Baccalaureate curriculum, raise his pigs for FFA and basically be my right hand person. It is certainly not a normal teenage existence and I know it is difficult and frustrating for him, especially when Jon never seems to be aware or appreciative all the work he does yet always notices if he leaves on a light or has him music just a smidge too loud. I sometimes feel that this is so unfair to all of us but in the end it has made each of us stronger in our own way.

The plan for the week is to continue to support Jon's liver with acupuncture, energy work, herbal supplements and medication. I am expecting the next scan to be scheduled this week and chemotherapy to start again in March.

I had a long talk with Dr. Chue and he is totally thumbs up on Dr. Lin, his assessment and treatment plan. My next goal is to get the two of them to talk and order Jon's scan. All the calls are made, just waiting on the follow through.

Jon has been really nice to me lately...must be all that new blood :)