DONOR - Oh My!

On Tuesday John got a phone call from his care coordinator Rachael. She had 2 important things. One was that our insurance company agreed to cover John's transplant!!! First they said NO, so this is huge! Second thing was that she had a donor for the transplant. It is a worldwide registry so I have no idea where the person is from. She did say "he" at one point though. She requested blood samples from the top 6 matches. 5 were "unavailable" and one send his sample in. He was a perfect match in every way they want. It is super excting. BUT . . . super nerve wrecking!

When John told me I was so excited and happy. And then it hit me: Oh CRAP, "here we go again". I am so not ready for this again. I had a flood of emotions wash over me. It really is fabulous. We knew there would be a good match and we knew it was coming. But, now it is really here. Life has just been feeling a little normal again. John is feeling good and cancer is gone and we are all starting to adjust to our new normal. I knew the day was coming. We knew the plan is for him to go back for the donor transplant. It is just scary.

Every one is so supportive and so excited for us. But, I am freaking out. This will be 4-6 weeks in the hospital :( And the constant worry of Graft vs Host Disease (GVHD). Something we will have to watch for the rest of his life! AND - this is it. It works or it doesn't. So, although I am happy to have a match, I am also super scared. The current plan is for John to go back to the hospital of May 6. At least we have a few more weeks :)

Update

Everything has been going OK. John is feeling pretty good and getting stronger every day. Not eating great and thinks he is having issues with dairy. So we are experimenting with diet. He is walking 1-2 miles every day. Not a ton of energy but able to do most things that he wants to. Kids were just on Spring break and it was fun to all be together.  This is what we have been up to:

John's 4 best frieds from high school came to visit. They made a road trip one weekend. John was SO excited to see all of them. They stayed in a hotel, but visited with John during the days. They took a drive up Big Cottonwood canyon, played lots of games. And one day John took them to temple square.  The kids loved visiting with them too and no one wanted them to leave.

We are having great weather some days :) Every one loves when I put the hammocks up. But then I am constantly taking them down when it rains or snows. It is just that time of year when it can be 45 or 75. When it is nice John loves to hang out in a hammock.

The LLS had a 5K walk/run that we participated in. John's goal was to be able to finish it :) He walked the whole time and finished in under one hour. Luckily the weather was perfect. Our good friends the Moore's came too and this is Matt and John. Matt walked with John the whole time. I was so grateful so I was able to walk/run with the kids.

In the end we all ran to come in with John and Matt. I made John jog the last hundred feet. I told him you have to finish running :) He did it. On the left is Nathan (I can't remember his last name). He was a patient at LDS East 8 and is now cancer free. He was hosting the event. He also came with us to find John and run in with him. 

John's sister Christy came to visit for a week right after "the Guys" left. It was fun to have her here. It was a crazy week and this is the only picture I have of when she was here. This is John with Christy and 2 of his brothers, Jeff and Dave.

One day we played a family game of HORSE! It was so fun and everyone loved it. We had never done it as a family before. Of course John won :)

OK - totally out of order :) This is our group at the LLS 5K. Our family, the Moore's and Brook and Dave and their 2 boys!

John and his boys with matching ties for Easter Sunday. We love that Utah has these great tie stores where there are so many matching tie options :) 

So, ya we have been busy. Life has still been full of challenges, but we are making it through. We are constantly being blessed and are so grateful for the amazing people in our lives. Some days seem almost "normal" and other days I feel like there are signs of cancer and our lives changing all around us. It is HARD and stressful. Some days I feel like I am barely hanging in there, just going through the motions. I try to not think about the future too much, since who knows what it will hold. I try to enjoy each and every day. But it is easier said than done. I am so grateful for my family and that we have each other. I know one of these days it will get easier. 

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 :)