PICTURES

Here are just a bunch of pictures:

John getting his hair cut before going into the hospital.

More is coming off :)

Just for fun.

All done.

This is as short as we went.

On a walk a few days after transplant when John was feeling ok.

And, all gone. It was about day 15 in the hospital it started coming out. He CNA buzzed it and then he and I shaved it.

This is when His brothers Jeff and Dave came to visit and nephew Lucas.

This is actually the day he left with some family friends, the Scribners.

Been home for 1 week

This week has gone by kind of fast. Everything is going pretty good.

John had an appointment on Friday and that went good. His numbers are all where they should be. His liver function is reading high but has been going down since he was released from the hospital. The Dr's are not worried about it and are pretty sure it is from him being on TPN IV nutrients for so long. John has another appointment tomorrow so hopefully it is still going down. He had a pretty nasty cough and cold, but it is almost gone.

John is sleeping WAY better at home than he was in the hospital :). He is still not eating as much as he should be. He just does not have much of an appetite. But, he does eat 3 small meals a day. He is probably only eating about 1200 calories a day - maybe a little more. They want him at 2200 a day. He is working on it. He has lost about 15 pounds in the past month. I keep telling him at least he had the weight to lose :)

We are walking every day. There is a LLS 5K coming up in 1 1/2 weeks that we are preparing for. John will just walk it, but he is excited to be able to walk 3 miles. Today he walked 1 1/2 miles straight. it took about 40 minutes. The weather has been super nice, so it has been easy to get out. But it is starting to cool off, so I am not sure how easy it will be to go walking. But, hopefully by the end of the week he can walk for 2 miles.

John has been able to go out a few times. He went to Abigail's musical "Suessical" Friday night. He did sit up on the balcony where only the spot lights and stage crew were. So, that was nice that he was able to go and not be surrounded by strange germs. He also went with me to Lowe's today. That place is never crowded so it was good for him. John is loving having time and has finished 2 books this week :) The kids love having him home and he is able to help with homework and has really been helping a lot with Isaiah's reading.

So, gratefully nothing really new going on. John is excited to see 4 of his friends that are driving out from CA this weekend to spend time with him and then his sister Christy comes in one week.

He's HOME!!!

YAY!!! We are all so excited to have John home :) 21 DAYS! It was a long 21 days. To sum it up John had 2 days of high dose chemo, 1 day of rest, 1 transplant day, then 17 days recovering in the hospital. He had constant nausea and puking, diarrhea, for 2 weeks was on TPN IV nutrients and could not eat anything on his own, he got typhlitis (inflammation in his intestines) and was SO close to having to have surgery for that. I went and saw him every day, most days for about 8 hours. The kids only saw him once a week, on Sundays. Three of my sisters, Emily, Blair and Lauren all came for a week each to help at home. John saw a Doctor every day, a PA 1-2 times a day, a Nutritionist a couple times a week, a RN and CNA innumerable times each day. He had an x ray and a CT scan, he had lab work done daily. His white blood cells were at 0 for several days and at 18,000 when we left. he had 3 transfusions. He lost 10 pounds. I saw the same loved ones walking the halls every day, people laughing, people crying. I saw the same cars in the parking lot every day, we could name almost every nurse and person we saw in the halls by name. I have a buy 10 get one free ice cream card from "The Grove" on the first floor. Some days I even predicted who his nurse would be. I saw people going through worse things than us and am grateful for every moment. We are so grateful for and love all the staff, nurses and Dr's at LDS Hospital East 8 - they are amazing.

We were so blessed with prayers, love, support and fasting. Cards in the mail, dinners, desserts, money, gifts for the kids, gift cards, books. Rides and play dates for kids. Hugs and so many kind works. Fabulous neighbors and friends. Thank you everyone.

John has been home for one day and is doing ok. He is still having some issues with nausea, but is slowly eating more. We are so happy to have him home. He is still pretty weak, but I did take him on a half mile walk today. He is also on an IV antibiotic for 4 more days. But, luckily home health brought it by and I can hook it up to his central line each day. It is expected to take about 4 weeks before he is feeling some what normal. He will go into the hospital out patient clinic about once a week for lab work and a check up.

Currently he is in remission. We are not sure how long his body could stay in this state. Some do for a few months, others can for a few years. John will be having his 2nd stem cell transplant (the allo one which is from a donor) in about 2 months. John is happy to be off of chemo for now. He is still on meds for his neuropathy, an antibiotic, and has several as needed meds for pain, nausea, and sleep. Since neither of his full siblings were a match, we are now waiting to hear what comes from the bone marrow registry. He has 27 potential matches and they take the top 3 and request a blood sample and go from there. And then begin this all again.

Why John has cacner

I had a neat experience yesterday on my way to the hospital. For some of you reading this, this experience may make sense, for others it may not. But it was very real to me and this is my personal journal and I wanted to get it down.

I was driving to the hospital thinking about "why John?". It should be me. My dad died from cancer and I have 4 grandparents who have had cancer. It runs in my blood and I have a much higher chance of getting it - not John. The only cancer in his family is from his father and he had lung cancer because he smoked a TON. I was also thinking about how HARD it would be for me. I could not stand to be away from my kids and home this long. I would just sit her and cry - I couldn't do it.

So I was just driving and wondering why he has it and not me. Then it was almost like I had a memory from the pre-existence. It wasn't a dream or vision or voice or anything, kind of hard to explain. Just a feeling/memory. I was supposed to have cancer. It is supposed to be me. But before we came to earth we knew what some of our trails would be. I agreed to cancer. But John knew how hard it would be on me. So he asked if he could have it instead. And God said yes. I believe it was one of John and my first "tests".  He is going through this for me. And although I said it was supposed to be me; it was supposed to be him. Because God knew John would ask for it.

I would not be able to do what he is doing. I can be the caregiver, but I could not be the patient and only see my kids a few hours a week, and not know how they are, and not be grocery shopping and cleaning. I couldn't do it. I need to be with my kids and taking care of my house. I could not stay in a hospital room ALL day for 3 - 4 weeks! I just couldn't do it. And even before we came here, John knew that about me and he took that trial from me. I love him forever!

Frustration

The past few days have been pretty uneventful. I feel like I am in the movie "Groundhogs Day". My days are so similar.

• Get up at 6:30 am, help Abby get reday for school.
• 7:15 - wake up the other 4 kids
• 7: 45 - breakfast, chores and fix the girls hair.
• 8:00 - start laundry and clean up breakfast
• 8:20 - kids to school - my sisters have been taking them so I can get ready.
• 9:00 - leave for the hospital
• 9:30 - 5:30 - hang out with John in his room, try to take him on 3 walks, play a game or two, watch a movie (maybe), watch a few episodes of "Lost", try and eat. Work on paperwork for health insurance . . .
• Home by 6 pm, eat dinner,
• 7:00 - have kids call John, scriptures study and get kids in bed.
• 8:00 - do some cleaning and get into bed.

Even though my days seem to go in circles, for John it is even worse. His blood counts are all where they are supposed to be - totally good enough to be home. But he is going in a circle of not eating, slowly adding sips, then liquids, then soft food - then throwing up again. Every time he throws up he has to wait and go 24 hours with our puking before starting the cycle over. He also has had constant diarhhea for the past 2 weeks that has not gotten better. But until those 2 issues are solved he can not go home. He is super frustrated. He is on constant nausea meds and they don't seem to help. It seems like his drinks and food are not making their way into the intestines. They sit in his stomach until he pukes and that is why all he has in diarhhea too. Liquids and food are not making their way through. His body has been through a lot these past few weeks and his body is now trying to recover. It just takes time and he is so frustrated. In reality no one has left this hospital after an auto transplant before 18 days in the hospital. Today is Johns 17th day. It is typically 3-4 weeks. So, it isn't like he "should" be home by now. We are all just tired of him being here and he wants to be home.

He has had a few good days this week and every day he seems to have a period of time where he feels pretty good. Today he has been very blah and frustrated. He was hoping to be going home this weekend and that is not happening.

CANCER SUCKS!!!

It is interesting for me coming and going from the hospital each day. I see the same cars in the parking lot, I see the same caregivers and loved ones on this floor, same patinets when we go on walks, I even predicted who would be John's nurse the other day. Yesterday we were on a walk and saw a young mom patient, holding her daughters hand (maybe around 2), walking with Grandpa. It broke my heart to see this little one with her Mom here in the hospital. I could not do it. I would make my kids come sleep in my room every night. I could not be away from them like this. It is all so so frustrating.

One of these days John will get home. Abigail is in her schools musical and it is next week. I told John I bought him a ticket for Friday night and that is his goal to be home by then. Still one week away :)

Day 14 (or day 10)

AHHH - at 2 weeks.  It has been a long 2 weeks. But in a weird way it has gone by pretty fast. It has been a stressful past few days. And of course, I am in between sisters for 3 1/2 days. John has had a bad pain in his lower left side. After a few days an x ray came back clear. Then after another day of no improvements a CT scan was done. This showed inflammation and a blockage in the large intestine near the colon!! NOT good news. For a typical healthy person it means surgery. But for John, that is not really an option at this point with NO immune system. So he is currently on a bowel rest diet. Which means nothing other than water only to take his pills. He is still on the TPN for nutrition, but is finally starting to feel hungry and wants food. It seems like the pain is a little better today. We are all really hoping this solves itself as John's numbers come up. If he has to have surgery it is pretty risky and dangerous for him.

He is still pretty nauseas and on constant anti nausea meds. But he now only throws up about 2 times a day. That should also get better as his numbers come up. Which should really start coming up in the next 2 days. If his nausea gets worse or keeps coming they will have to put a tube down his nose and into his stomach to have a constant suction. EWWW, and he does not want that. They really try to avoid as many tubes as possible. Tubes can cause infections and John has no immune system to fight it.

John seems to be doing ok overall. He is getting really tired of his room. He is supposed to go on at least 3 walks a day. But he is only allowed to walk on his floor and only the East side. So, it is not super exciting, but does get him out of his room. He has not been real up to leaving his room though with his super low energy level. It's a bad circle. Ideally John should be home in a week. Not so sure that will happen. His white blood cells have just started to come up but barely and are only at 200. His nutrifills have to be at 500 and they are still at 0. He also has to be eating and drinking, which he is not doing. And this blockage and inflammation has to be cleared.

I brought the kids to see John yesterday. They were excited to see him. Michael had not seen him since he has been here. We had Family Home Evening here in John's room :) And we took John on a walk.

I am hanging in there, one day at a time. I am going through a stage where I am super jealous of everyone that has any sort of "normalcy" to life. I look at friends and family and get kind of mad when their Saturdays are full of date nights and soccer games and basketball games and cooking and playing. I really need to not look on facebook because I get so frustrated when peoples biggest issues would be my biggest dream right now. Everything is super hard right now. I am really trying to get use to this "new normal". But new normal keeps changing so I can't get use to anything. Just keep trying and praying with faith.

Day 7 (or 11 days in Hospital)

This hospital thing is getting old :) Actually it isn't awful, just feels like the same thing over and over again and the days kind of blend together.  I can't imagine how it feels for John. I at least get to leave to the hospital and walk wherever I want to :)

John is doing ok. Yesterday was better than today. His nausea is kind of under control - well, better than it was. He is not throwing up as often as he used to, but still throws up most things that go in - including whole pills that never digest! Yesterday he had an ok amount of energy, we went on 3 walks, watched TV, played games and he was awake like all day :) Today he went on 2 short walks, we played a game. But he is having a really bad cramp in his lower left abdomen. They even did an xray to check it out because it is hurting SO bad. (he was so excited to leave the 8th floor and go somewhere else, even if it was still in the hospital). Xray was clear, so guess is it is probably gas. Kind of a wait and see situation. Because of that pain, his energy levels were quite low today. His white blood cell count is at 0 - it should stay here for a few days and then start to go up. When the numbers go up, he should start to feel a lot better. Still no mouth sores, and no infections. He does have one white spot of thrush in his mouth, but it could be worse. He has also not needed any transfusions yet and hoping he doesn't although that is really rare.

Another bit of news is that John's brother George has "passed" Stage 1 in the matching as a donor for John's allo transplant. Stage 2 has started and we should know early next week. If he is still a match at Stage 2, the he is a full match and can be the donor. His sister Christy was not a match at Stage 1 so she  does not move on to Stage 2 and is definitely not a match.

I am doing ok. I am tired and not sleeping very well at nights. I get up and get the kids ready each morning then my sisters take them to school. I finish getting ready and am usually at the hospital about 9:30 am. Our days are all pretty similar: A nurse or CNA is in about every hour to check on John, his PA comes in once or twice a day and a Dr. comes in once a day. A Dietician comes in once every couple of days, a social worker comes in once every few days, his care coordinator - Rachel, comes in once every other day or so, and he has another nurse who is kind of in charge of this stay and she comes in every few days. I try to get John to go on 3-4 walks a day, take a shower, I try to read to him every day, we watch a few episodes of "Lost" every day and usually play 1-2 games. John usually has a nap, I have a book I am reading and I am also constantly working on paperwork for medicaid disability and applying for food stamps and health insurance for Abby and I. Those are pretty much our days. I usually leave at 5:30 pm and get home around 6. John "could" be home late next week, but maybe not - we will see.

Grateful for sisters who have been here. They get kids to school, pick them up, help with homework and do dinner :) I like to be home for bedtime and to see the kids a little bit. Blair leaves tomorrow and then Emily comes Tuesday night. So I get a few days "on my own".