2 YEARS

Yep - 2 years have come and gone. It is so hard to even try and remember what we were facing 2 years ago today. Everything was so new and scary. So much has happened it these past 2 years since John was diagnosed with cancer. We have faced many battles together, made many hard decisions, cried many tears, prayed many tears, lost a ton of sleep, but been blessed it ways I never imagined. It has been the hardest 2 years ever. We have learned a lot and continue to learn every day. Every stage of this has been a process. And every stage has been hard in different ways. We are now adjusting back to a somewhat "normal" life. John is getting use to his work schedule and we are getting use to him working. Kids are getting use to school and all that busyness. My biggest complaint is how busy John is. One year ago, I had no idea that this would be my complaint. I was probably praying for this :) Life is pretty good and I am so grateful for that.

LIGHT THE NIGHT 2014

Yay for another light the night. John was able to reach his fundraising goal of $3000. He is very excited about that. Especially since we aren't sure how involved we will be nest year. John works for "Be the Match" and although Be the Match and LLS are both working to find a cure for blood cancers, they are competitors when it comes to fundraising. Since they both fundraise for research. So, he kind of can't work for one and personally fundraise for another! But, we are working on figuring that one out. We still love LLS and all they do and all they have done for us. So, we had a fun night, kids played and we invited our friends the Moores to come so our kids would have friends. It was a great night. And I believe John was the 2nd or 3rd highest fundraiser in SLC!

Our team, with friends and family.

John with 2 of his favorite nurses - Ashley and Alyssa!

WORKING

Well, we have been busy! Especially John! It is nice to be getting back to some normalcy - slowly. John was busy working part time for Be the Match when he applied for a full-time job. After several weeks and lots of interviews he was offered the job and started working full-time this week. YAY for benefits and a happy working husband. It is a great job that he loves. It is exactly what he wanted. He wanted to work for LLS or Be the Match and be able to make a difference in lives. He is busy running and planning donor drives.

Overall John is feeling really good. He is almost off of his cyclo :) Just a few more weeks. Hopefully that keeps going well and stupid GVH stays away. All of his numbers have been great, except 2 of his liver enzymes have been creeping up - I hate that. But they have been doing that for months.  They go up and down and up and down. Oh - but now John has to have cataract surgery! Effects of chemo and high doses of prednisone. But, luckily once that is over, he should be able to see much better. He is nervous, but excited about it.

Other than that, we have just been busy. Kids are back into the swing of school, but have way too much homework. John has clinic appointments twice a month, which will continue for a while.

Oh - and we have Light the Night tomorrow night. John and our friend Amanda put on a fabulous voice recital as a benefit concert. It was super fun and John loved performing again. They raised several hundred dollars and had fun with it. Overall John has raised over $3000, and hit his goal.

UPDATE

John has been pretty "boring" (which we like) lately, so there hasn't been much to update. He is feeling pretty good and staying very busy. 

John and his brother Chris lighting fireworks on the 4th of July in front of our house. This was super fun because last year John and I were in the hospital on July 4.

  

And last week we went camping at Pineview Reservoir. It was quite an adventure :) We had it planned for months and then of course (for the 3rd time) we get a rain storm for camping. I honestly was not sure if I wanted to go since we tent camp. In the end, we did go and decided we would make the best of it. So we took games and when it rained, we all took cover in the tents and played games :) It was super fun actually. One night there was a huge wind storm and John and I were up at 1 am playing TTR because we couldn't sleep. When it wasn't stormy the weather was gorgeous and we had fun playing in the water. 

John is busy busy working and teaching voice lessons.  His job is going well, but with that and voice students and 2 recitals coming up, he does not have much extra time. Which is crazy. I never thought that one year ago, this would be my complaint :) But, he loves running the donor drives and loves teaching voice. He has also been going to sacrament meeting at church and he loves that. He loves having his car and that freedom with out us trying to share one car and juggle everything. 

His appointments have been good lately. Although his white blood cell and neutrophils have been low. Possibly the result of one of his medications so hopefully we get that figured out since he really needs those neutrophils. It is weird to think that he was diagnosed almost 2 years ago. You never know what life has for you right around the corner. 

Life Goes On . . .

This has been a BIG summer! WAY better than last summer, being in the hospital! We decided to really make this summer count and make some great family memories. John is feeling really well. He has pretty much normal energy levels and does almost everything he wants :) His immune system is still weak but at least it is not cold and flu season. He has started going to sacrament meeting in church and he loves it. Maybe in a few months he can go to all his meetings. We have been very busy playing as a family.

Summer started out with the birth of a new niece - Audrey Ann. We love her and are so happy to have a baby around. John can not get enough of her.

We surprised the kids with a trip to Park City! It was one of the best vacations ever! My sister Emily and her husband Ross gave us a week at their timeshare. It was months ago and of all the places we could go, we chose a Marriott 35 minutes from home :) Which turned out perfect since it was also Abby's performance week of "Into the Woods" so we were back and forth almost every day. We had a fabulous 2 bedroom unit and the resort had a super fun kids area with video games, pool, ping pong, a mini movie theatre and tons of daily activities. They had a big pool and 6 hot tubs :) We took a day and bought passes for Park City Mountain Resort and rode the ski lift, alpine coaster, alpine slide, zip line, zip rider, mini golf and a few other activities. It was the funnest day and we did not want to stop for anything! And it was right at the resort, so we would run in to eat when we had to :) We also took the ski lift to the TOP of the mountain. It was a 20 minute ride and one of the most amazing experiences ever! It was so fun to vacation close to home and experience so many fun things.

We also discovered a fabulous reservoir. Pineview Reservoir is only one hour from here. The beach area is decent and the water is warm. We love that it is close and it was super fun. Other than we did get rained on for an hour and left early. 

John had a birthday! We were in Park City but came down that night for Abby's show. We met all the family at Texas Roadhouse to celebrate and it was a fun busy night. 

This was John's fathers day and birthday present :) I gave him a trip to Austin, TX to go to his sisters wedding! We didn't think he would be up to going, but he was and felt fine. I was nervous sending him on his own and worried about airport, airplane, hotel, rental car germs! But, he was good about sanitizing and cleaning. It was way too expensive for all of us to drive or fly, so I sent John. He took 4 days and had a great time. He had his own weekend to himself and stayed a few days after the wedding to sightsee, since he had no reason to hurry home! 

He still has this rash thing on his body. He was finally sent to a dermatologist who did a biopsy. Turns out, it is called spongiotic dermatitis - which is a fancy name for bad eczema. Most likely a result of chemo and eventually it will go away. For now, just treat it with creams. We are so glad it is NOT GVH and can taper his cyclo more now and stregthen that immune system.

And as if that isn't enough . . . John has officially started a job!! Today! He still has his 12 voice students too. Be The Match offered him a job that he was more than happy to accept. He is the Drive Attendant for the state of Utah. He had gone through the volunteer training to run his bone marrow drive and has volunteered his time for other drives. The person who was running Utah drives has quit, so they offered the job to John. It is perfect for him, since it is working from home other than going to the drives on weekends. It is 30 hours a week for now (but hoping in the next 6 months it will be full time with benefits). I don't love that he is gone most Saturdays, but when he is gone a Saturday he gives us a weekday where he doesn't work. He has kind of been "working" for a few weeks, just without being officially hired. Luckily he gets to roll those hours into his pay time, now that it is official. He has a big 2 day drive this weekend which one of our leukemia friends wanted to do. He is so excited for it. 

It was kind of funny to have to wake up this morning and get up and get kids up and breakfast with out John. He was up and in his office working. This will take some getting use to. It took time, but I got use to having him home and helping me! With his voice students he is now working 45-50 hours a week! Time to get adjusted to our new normal - again :)

ONE YEAR!!!!

I will start off by saying that JOHN IS CANCER FREE! It has been the busiest week and super stressful at times and very long! But, I think all test results are in. We do know his bone marrow is clear and he is still 100% his donor. 

Tuesday morning was his big 1 year appt with a billion tests. The day turned out way longer than expected - like 14 hours long and technically being admitted :) 

This is one of our favorite PA's Melissa getting ready to do John's bone marrow biopsy. We definitely have our favorite PA's and Melissa is one of them. I actually request PA's for every single appointment :) This was John's 5th bone marrow biopsy (and I am pretty sure he won't need another one for another year now). But, it had been 9 months since his last one. I wanted to be "brave" and stay and watch the procedure. I have not watched any of them. I HATE needles and this whole procedure is about needles. John wanted me to take pictures too. So, I tried :) Yep, tried. I did not last very long. Actually I could not get past the 6 inch lidocaine shots. Tony - our nurse told me I should sit dow and I was like Why? He could tell I was not doing good. I moved and said "um, I'm leaving". Luckily I did not pass out though. It went fine, but I am glad I wasn't there. I could have done it for one of my kids, but I knew John was in good hands and I was not worried about him.

So, inpatient: John had tested positive for Epstein Barr virus twice and the 2nd time the number was really high. It is a nasty virus that they caught through a blood test before John had any symptoms of it.  They had to do a cat scan to make sure it was not in his lymph nodes (gratefully it wasn't). And then treat it with an infusion of rituxin. It is a 4 hour infusion once a week. The Doc wanted to start it that day, but by the time test results were back, it was like 3 pm. The clinic closed at 5, so John had to be admitted to get he infusion. And it took a couple of hours for them to get it ready. So, I came home got kids from school, did dinner, bed and when back and got John when he was done at 10:30 pm. He had been there since 8:30 am. It was a long long day. Tons of blood work, GVH assessment, cat scan, bone survey, bone marrow biopsy, infusion of zometa, chest X-ray, and then the rituxin. He never even made it to his pulmonary test. He was so tired. Oh and then after more blood work that day, it came back testing negative for Epstein Barr. It is gone and the infusion was not necessary :)

In one week we will meet with a Doc to go over all the results. We can see them all online so we know what is going on. But they will talk more specifics and tell us what is next. 

SO - onto the next thing: John's bone marrow drive. He has been planning this for months and was so excited to be there for this one. He was super sick and slept through the one he planned last year. It took a lot of work and a lot of planning and organizing. But, everything came together.  He even contacted the Red Cross and they came and did a blood drive at the same time. It was perfect.  

Two of our favorite nurses Aimee and Amanda came and volunteered all morning. They both joined the bone marrow registry and Aimme donated blood too. We love them. 

John went through training and became a Volunteer Ambassador for Be the Match. So he could run his own drive and can do others too. 

Our good friends Chris and Rebekah drove about 40 min to come. Chris is a patient we met on East 8. He had a haplo transplant. He had no matches in the registry and his sister was a half match. His transplant was Oct. 28 (I only know because it is my birthday).  He is doing great and is even back at work full time. Rebekah came and donated blood. It was so fun to see them.

Aimme and I.

YAY - I am in the registry too. 

Another one of our favorite nurses, Lauren came to join the registry. We SO love her. When John had his first transplant she was his nurse for 10 out of the 20 days he was there.

John added about 30 people to the bone marrow registry and we had about 18 people come and donate blood. We gave out bone marrow registry kits to several nurses at the hospital too and even one of the PA's who was not in the registry. I am amazed at those East 8 people who are not on the registry!!!! 

We are so blessed with so many people that volunteered time, money (he raised over $700 for Be the Match), people made a ton of goodies (that we had and asked for donations), ward members, friends and family came and gave blood and those that could joined the registry. It was a great and tiring day. 

Oh - and I gave blood for the first time EVER. It wasn't that bad. Even though I have my fear of needles. I was so nervous, but was somehow calm and felt totally fine. My BP was fine and I did not get light headed or anything. 

Getting closer

AHHHHH! so close to the one year mark. 9 days away :) 

Things have been pretty busy lately. And John has not been feeling great. Feeling ok, just not great. He has been more tired and napping and has had skin GVH! It is really itchy and drives him crazy. It has been on his face, head, and torso. His cyclo has not been tapered in a while because of it. So far, it has only gotten a little better and we just have to wait and watch. Tapering cyclo can make it worse. 

Also at his appt last week his liver enzymes were all HIGH. Some were almost doubled. I hate that. I always watch those liver numbers and they have been great lately. It actually could be GVH too. Since he has had it on the skin it is more likely it can be in other places too. 

Next week Tuesday (one week from today), John has his 1 year post transplant appt. They will check all those numbers and we will go from there. We are hoping and praying there are still no signs of cancer. But, we also have to remember there are 3 things to worry about: the cancer, GVH and infections. Once he is off cyclo that risk of infections is less and he can be re-immunized. But as long as the cyclo is being tapered his risk of GVH is higher!!! Cancer sucks.

This was John on Sunday. We all came home from church and he was sound asleep. Yes, he is holding a pasta spoon in his hand. He uses it to scratch his back where it itches from the GVH :) I kept scratching it for him and finally gave him this spoon, which works great. 

John is staying super busy right now. Still loves teaching his voice students and is preparing for his annual bone marrow drive, which is in less than 2 weeks. He is so excited for it. AND he applied for a job with the LLS. He has another interview tomorrow and he is pretty hopeful about it. It is part time and pay is not great. But, it gives him more to do and he would get to work with LLS and he would get out of the house :)

We are all pretty nervous about his appt next week and all the tests. But, still holding on with faith.

11 months post transplant

WOW - tomorrow will be 11 months since John had his Allo transplant! I am not sure if it has gone by fast or slow - depends on how I am looking at it :) This means that in about a month he has his 1 year work up with a ton of tests!! Kind of nervous about it.

I finally got a decent family picture on Easter. We were quickly taking some pictures with my camera on a tri pod before beading to 9 am church. No Abby is not wearing heels - she is that much taller than me :)

Also, it had been a long time but John and I were able to go to the temple together. I have been pretty good about going monthly, but that has been a little hard for John. He has been several times in this past year, but it has been a long time since we have been together. 

As for an update: John is doing ok - he has been better. About 2 weeks ago we noticed that the skin on his back and sides felt bumpy. It was just the day before an appt so we had them look. It was decided that it was mild GVH of the skin. It was not real red like it can be, and it was only on his back. So they increased his cycle and gave him some cream for it. Well, it kept getting worse and spread to most of his body. So we had to go back (and saw our least favorite PA who was helpless). Ended up with more cream and that was it :( But, luckily it is getting better. John has been having trouble sleeping because it is so itchy, but sleeping pills and benadryl help with that. He has another appt tomorrow and we will see what they say. He has also been nauseas this weekend - which is really weird. It has been a long time since he has been nauseas. The GVH could be moving to his gut, but John doesn't think it is. Who knows?? John's body does its own thing.

John loves teaching voice and stays pretty busy with that. They have their first recital this week and John is excited about that. It has been tricky for me though. John teaches every Wednesday and Thursday night. I did not realize how busy those nights were. And then add that John can not help at all and it is HARD! Abby also has voice lessons Wednesday nights and Isaiah has baseball every Thursday and cub scouts and other things are always thrown into the mix. Then I am also trying to help with homework, make dinner, clean up, keep the kids quiet (because John teaches in the room right by the kitchen), get kids bathed and in bed.  It is just crazy. But, I am doing it.

It has also been really hard lately only having one car. For so long it was not a problem because John wasn't driving or wasn't really going any where. Now, he always needs the car for errands. Or we have one kid that needs to be somewhere with me and another kid that needs to be somewhere else at the same time. It is tricky!! But, we aren't getting another car yet. The deal was we would get another car when John goes back to work. Because we can not afford one until John is making money. So, we get creative for now and are grateful that our church most of the kids activities are literally right across the street :)

Overall everything has been kind of hard for John. It is hard that this is a cancer that takes a LONG time to "treat". So many people get cancer and have their chemo, radiation, surgeries, recoveries and comes and goes in a matter of weeks to a few months. John is now at almost 19 months. He has not worked in over 14 months. Most of the time he feels ok. But still low energy sometimes. His Dr. said he could go back to work part time if he had the energy. And since he is teaching voice, that is part time. He still does not have much of an immune system.  And with this GVH his cyclo went back up and it was being tapered. So, now it will probably be 4-6 months before he is off it. He is tired of taking meds every day, tired of not being able to go to church, tired of not being able to work, tired of being tired. BUT, we are both grateful he is still cancer free and overall his health is pretty good. It is just interesting how every stage of this is SO hard. Every stage is so different, and has its own challenges. 

Much easier this time

John was able to baptize Isaiah on Saturday :) Our last one, that is kind of weird. And yes, this one was much easier for him than Jenna's was. It is amazing how much can happen in 1 1/2 years. When Jenna turned 8 John was just diagnosed with cancer. He literally made it to her baptism straight from the hospital because of pneumonia. He was so weak and tired and looked so sick. Isaiah's was no big deal. He felt great and had plenty of energy.  It was a great day.

So ya, overall John is doing fine. He is definitely not up to normal energy levels, but getting stronger every day. He is loving teaching voice and his students and they are getting ready for a recital in a few weeks. He still has appointments every other week and this week everything was great. Our newest thing is he has skin GVH :( If you have to have GVH the skin is the best place, but still not fun. Way better than the gut though :) It is mild but still there and uncomfortable. It is mostly on his torso. A real bumpy reddish rash. Also around his eyes are swollen and pink. Unfortunately his cyclo had to go back up. He was only a few months away from being off it as he had been tapering. But, oh well - if all goes well, probably 4 - 6 months now. We are hoping the GVH stays on his skin and does not spread anywhere else!!!

John is so anxious to get back to church and do "normal" things. That is the hard part right now. This Sunday he is going to church because it is Easter, but then will have to wait a few months before going again. The Docs said late in, early out and no shaking hands :) Gratefully we are at the end of cold/flu/RSV season. So, not as many germs to worry about. It still amazes me how much our lives have changed and how much of a germaphobe I am now :)

Not much to update

That is always good - right? Nothing new. John's lab work was great this week and he is feeling good. His swelling is gone from his feet and blood pressure has been normal every day. His cyclo taper is going good. One night he did have rapid heart beat and low blood pressure. But, it passed and he has been fine. He has realized that he might not be able to walk a half marathon this summer though. His feet killed him at Disneyland so we will probably start with a 5K and see how it goes.

For some reason these past few days I have been thinking a lot about our journey these past 18 months. This has definitely been the longest 18 months of my life! Everything about our lives has changed. Although John is doing great, no signs of cancer, GVH or infections, we still have a different daily life. From lysol wiping all 3 bathrooms every day, making sure John does not eat any food older than 2 days, making sure he gets his right meds (only twice a day now), wearing his mask whenever out in public . . . I have just been counting our blessings and so grateful for all we have, for how the Lord has watched over us. I have never in my life felt so close to my Father in Heaven. I KNOW he has been mindful of us and been watching me and blessing me. He knows what I need. My testimony has grown a ton and I have grown closer to my Savior. There were times when I honestly did not know if John would make it off of East 8 at LDS Hospital alive, there were times, I knew he would :) There have been times I have not cared a single bit about the cleanliness of my house or homework getting done and times I have been way overly compulsive with all that. There have been nights I have cried myself to sleep because I was so scared and nights I cried myself to sleep because I was overwhelmed with blessings. Miracles do happen, the Lord is real. We don't know how much longer John has on earth. But as far as cancer the further out he goes the better. In the beginning I had an impression John would make it through this just fine. And I think of that all the time. Although I do not wish this on anyone, I would not trade what I have learned for anything.

California . . .

First of all John is doing really well.  He had another cold that hit him hard and he held on to it for several weeks.  We weren't even sure if we would be able to go on our trip. But we did :) We had been waiting for blood test results to see if his cancer was trying to come back and gratefully that came back normal and looks like his body is still fighting the cancer just fine!! It kept us very much on edge while waiting the 7 days for those results though. John is loving teaching voice and is now I believe at 14 students - I told him NO MORE! But he loves it so much. And it is nice having a little more of an income to pay off bills and also for this bedroom we are still working on adding upstairs.

And yes - John finally got to go more than 45 minutes from LDS Hospital! It was an amazing trip. We did everything we wanted to and loved every minute of it. He bought a week of John's parents time share so it was super nice to stay in a 3 bedroom "condo".  We had plenty of room.

We drove our on Saturday February 22. We drove to my cousins house in LA for his sons birthday party. It was fun to visit with family and for the kids to get a break and run around. So we didn't get to the hotel until like 9 pm. We were so so tired and ready to be out of the car. Sunday we pretty much spent all day at the beach :) we met my sister and had lunch and the kids played and played and got super sandy. Then we went back and swam in the pool too. Monday was a family day at Disneyland. We surprised the kids and met our best friends from Sacramento for dinner at Rainforest Cafe. It was so fun. Tuesday John took a break and stayed at the hotel and rested his swollen feet. The kids and I had a fabulous time at Disneyland and met the Crans for a while too. Wednesday John was able to take Abby and Michael to the San Diego temple. They loved it. Then the Crans came and we all went to the beach and took pictures. Then John and Erick went golfing. Linzi and I took all the kids to the pool for a few hours. We had dinner and then went back to the beach to play and watch the sunset. Thursday we were back at California Adventure. It was a perfect day and we met my Aunt and cousin B for a while too. It was a long day and John was so exhausted. Friday was supposed to be a beach day, but it was raining all day. We played in the pool and I took the kids to see the Lego movie - they loved it - I did not :) Then we had dinner with the Crans and played for a while. And then Saturday we just did not want to leave. So, we went to the pool for a while and waiting for the last minute possible to check out :) It was a long drive home and we did not get home until 1:30 am. But every thing was worth it.

We REALLY needed the break and family time together. The kids were really good and it was the perfect time to go. Disneyland was not too busy. All our kids could go on every ride. The kids took their own backpacks and carried their sweatshirts, water, snacks. lunch. It was fabulous. John had the disability pass so we were able to walk on the rides through fast pass or the exit. We did over 10 rides 2 times! The kids loved it. We let the kids stay up late every night!!! They were exhausted. Honestly, I can't wait to go again.

John was very protected at the beach :)

YAY - day 1 at Disneyland. 

Family Beach picture.

John and I. 

Moving forward with fatih

Oh My Goodness - 16 days until Disneyland!!! We are all SO excited. 

This was the last time we went as a family 3 1/2 years ago. The kids were so little.

Although I am SUPER excited, there are some things that make all of us a little nervous. The kids want to go so bad but also know that if Dad gets sick that we can't go - so onward with faith. We are planning and preparing and not planning on him getting sick. He has not been an inpatient in almost 7 months and we have no desire to end that streak now :) But it still weighs on us all and is something we think about.

I LOVE Disneyland - It really is magical. But, this is not a vacation at all.  We will be so busy and go go go. And I will even be doing one day at Disneyland with the kids by myself. We decided to give John a day off and rest and not do all 3 days with us. We aren't sure how much energy he will have. And that does not worry me, my kids are good and old enough and Abby is a great helper.

This is also the first time that we will not be staying in Anaheim and will have to drive one hour each way to and from. Which is fine because we will be closer to the beach for our days off.

Also I will be freaking out about a lot of things: sanitizing and germs and sun burns. A sunburn can give John GVH, so we will have a ton of sunscreen. And we will all be sanitizing after every thing we touch :) I have a feeling that this will be one of the trips that we come home from and I will say "OK - now I am ready for a vacation" :)

Some days are hard

So, I have actually been having a hard time lately and needed to get some thoughts out. Cancer sucks!

First of all, I really am so grateful for where we are and where John is. We have been blessed in so so many ways. He is 8 months post Allo transplant and everything is going better than expected. 

In October 2012 when we knew something was going on, but didn't know what, I told John, "I think you have leukemia and it is going to be a really hard year, but we will be ok". I was right. But, I had no idea what hard was, and had no idea how hard things would be post transplants. and no idea that a "really hard year" would last more that one year. No one can prepare you for how life will change.

After John's Allo transplant we came home with a packet of do's and  dont's. A BIG packet. At that point I was grateful that I have always kept a clean house and been a neat freak - maybe even OCD. I could not believe how much more I would need to do though, and how much John would not be allowed to do. I would have to do ALL the yard work (and I hate yard work). I love how the lawn looks right after being mowed and hate that 3 days later in needs it again. I hate weeding too. But John can not be around dirt or dust even with his mask on. John can not vacuum or dust the house or even be in the same room while it is being done (yep - all me, the kids do help though). All ceiling fans have to be cleaned every week (we have 7) and the one in our room twice a week. The whole house has to be dusted (I use lysol wipes) every week. Kitchen cupboards handles sanitized every other day. Our bed sheets washed twice a week, our bedroom vacuumed twice a week, our bedroom sanitized twice a week. All door handles and light switches sanitized every week. Honestly, I am SO tired of sanitizing all the time. It doesn't take long and I have a system for it, it is just a tedious chore and I am tired of it.

Like I said in an earlier post, John is feeling pretty good. And in a weird way, that is really hard. Because he wants to do normal things, he wants something to do. But, he still has a very weak immune system and can't go any where. We have one car and no money to do anything any ways :) Also since it is Winter and cold and flu season, John has to be very careful of where he goes. He can't even pick up car pools because of the confinement of a car and kids carrying who knows what from school. John's last day of work was Valentines Day last year - almost one year ago. He probably can not go back into a normal work setting for about one more year. It is HARD. He really wants to work. His appointments have been cut back a lot too, he does not go to occupational or physical therapy any more. He has a clinic appt once every 2 weeks and a lab appt (10 min away) on the off week. He still goes to his therapist once a week though. And that is it for appointments. At one point he pretty much had one appointment every day. 

I have been feeling judged lately be some people for choices John and I make. One of the things I have really learned this past year is to really think twice before judging others. My eyes have really been opened up to what might be going on in someones life. And I am not perfect, but I really really try to never judge. I have learned that everyone goes through HARD things and those hard things are different. There are lots and lots of things we do not do as a family. For months I tried to do everything I could and keep things normalish for the kids. But, that meant, being a single mom. I would take the kids everywhere by myself and it sucked. One day I was thinking of the "Good, Better, Best" and although it is definitely "good" to take my kids to a ward christmas party, it might not be "best". It is best to be home as a family and not leave John home by him self all the time. So, I have stopped doing a lot of things and prefer to stay home with John and be a family. No one knows what HELL we have been through these past 15 months. No one knows what it is like to be us. We have made many friends this past year and some even similar situations to us (family with 4 kids and Dad has cancer). And we can talk and have a lot in common but we do not know what it is like for the other family. No one knows what it is like to be me, to try and keep my kids happy and take care of a husband whose body is shutting down, to miss her parents every day and never in her life wishing for them to be here more than now, to have in laws 2 states away who haven't been able to help much. To want to do normal things, to tell kids "no, we don't have money for that" way too many times, to not be able to vacation or even go camping. To want to have a somewhat normal life and be no where near that, and feeling judged by others who do not even know what we have been through. 

I am so grateful for the family I have. They have done what they can. 3 of my sisters have left their jobs and families to come take care of mine for a week, my mother in law came for a week and my Aunt came for a week. I do not know what I would do with out that support.  Yes, we have great neighbors and friends who have helped the other 30 ish days John spent in a hospital when I did not have family here to help. But, I am really missing having a normalcy to life. Right when John was diagnosed my sisters and I were planning a sisters weekend to Palm Springs. I don't get breaks from my kids very often so I love our sisters weekends. Obviously I couldn't go any more and my sisters did go. That was really hard. And now my sisters are planning a camping trip to Yosemite for this summer and we can't go - I really hate it. It is just hard.

My Dad passed away from cancer when I was 16 (over 20 years ago) and my Mom passed away from ALS when I was 11 (over 25 years ago). There have been several times in my life when I have really missed them and wished they were still here (obvious things like, prom, first dates, leaving for college, getting married, giving birth, having a miscarriage, adopting . .) But, this past year has been the worst. I have wanted to call them so so many times and wished they were here every day. It has been hard.

On a lighter note :) Yes, I am excited for a family trip to Disneyland in a month.  Yes, it is a "trip", not a "vacation" and I could really use a vacation. But, this has been the kids reward trip. We have told them for the past year that as soon as the Doctors say Dad can go to Disneyland, we will go. Good thing for our tax return, because that is paying for this trip. But, I am already missing knowing this will not be a typical trip. I will have to go into the timeshare room and sanitize EVERYTHING before John can even go in, John will have to put sunscreen on every hour (sunburns can bring on GVH), we will have to take hand sanitizer to Disneyland, John will have to wear his mask, and John will not have all the energy he would like. Our plan is 3 days Disneyland and John is only going 2 days, so I will have a day by myself with the kids. Good thing for a responsible 13 year old or no way I could do it :) And, although Disneyland is a fun and exciting thing, we have 4 kids who have issues with any change. So, every time we have taken a trip, attitudes, back talking and tantrums are way way worse. They do not understand it and it isn't fair to anyone, it just happens every time something changes (breaks from school, having friends or family visit us, going on trips/vacations, a change in church time, any thing that is different). 

Honestly I do not know if life will ever be somewhat normal. No matter what happens, this has changed us and I will always think about and worry about certain things. In 3 years the Doctors may tell John he is "cured", but I am sure I will always think about it and worry and tell him to sanitize and wear his mask :) I long for the day when John will get up and eat and go to work and I will get kids to school and pick them up and help with homework and fix dinner and then John come home.  I can't wait to not worry about having kids friends over. I am trying to make the best of every day and I am truly grateful for every day, but some days are hard. 

Doing pretty good

Overall, things are going pretty good. John's energy levels are getting much better and he is eating just fine now :) (I'm actually trying to get him to slow down on eating) :)! 

His appointments and labs have been good. As Dr. Asch would say, "his liver is tickled". His liver enzymes are all a little high. They were all normal about a month ago. This is to be expected though and no on is concerned (except me - who checks labs immediately every week to see if they are going down). John either has another cold or the same one keeps coming and going. But, it is just a little cough and runny nose.

One of John's problems right now is that he wants to feel "normal" and do "normal" things. He actually feels somewhat normal. But the problem is, his immune system is still no where near being "normal". And we are still right in the middle of cold/flu season. He wants to go out and do things, but he shouldn't be. We do go to the movies about once a month. Which is really fun. We go on a week day to the first showing of the day. Yesterday we went and saw "Saving Mr. Banks" and there were only 4 other people in the theatre.  And it was a REALLY good movie. One of the best I have seen. 

We are also starting a home project. We are adding a wall upstairs and adding a bedroom. John is starting to teach voice lessons again - he is really excited to have something to do. But, we are turning Jenna's room in to his "studio". Our plan has always been to add bedrooms (we thought we could do 2, but can't because of the windows). So we are adding one and it will be BIG, so the boys will share it and we can move Jenna upstairs to Isaiah's room. It is just turning out to be a bigger project than we realized. We were hoping to have the work done while we are in CA next month. (YAY - we leave one month from today!!!!). We will see if that can happen.

One of John's goals pre cancer was to run a half marathon. Now that he feels good enough, his plan is to walk a half marathon. Actually he wants to do 2-3 this year. I said I will do at least one with him. I am not a runner, but love walking. The first one is in June.

Also, I can't believe we are 11 months past John's first transplant. Time is really going by fast.

Happy Anniversary to us

John and I actually had our 17th wedding Anniversary on Dec. 27, 2013. But we both had colds and kids were out of school and it was crazy being right after Christmas. So, we decided to celebrate after kids were back in school. We literally picked up In N Out for dinner on our Anniversary as a family and that was it :)

So, this week we drove out to Midway for a day and made the best of our day. 

First stop was lunch at the Blue Boar Inn. It was really good. It is also a Bed and Breakfast, that we would love to stay at some day. But the best part was that we were the only customers in there while we were there. The place was completely empty!!! No worry about where to sit for John :) After lunch they even showed us 5 of their rooms.

Then we went to get pedicures. And no I did not have to talk John into it. He was actually very excited and willing. And now he is totally addicted and can't wait for another. It was so fun to sit and relax. And as we were sitting there, it started to snow these perfect huge snowflakes.

Out last stop of the day was the Ice Castles. We drove by them a few years ago and have wanted to go see them. I was so glad they came back this year. The company travels and does not always go to Midway. It was amazing and so fun to see them. Apparently at night time it is way better. But, it was still really neat. And barely any one there. It was snowing the whole time we were there. I took a ton of pictures and was so amazed and how they can form these. 

Maybe next year we will be able to escape for more than a few hours!

A New Year

Happy 2014!!

I can not believe it is a new year.  This past year went by really fast. Maybe because we spent more time in the hospital than anticipated :)

We had a really good Christmas. We were very blessed by individuals, companies and organizations who wanted to help make our Christmas a good one. The kids had an amazing Christmas!! We actually pull off a very fun surprise. Christmas morning was "normal". They had Santa gifts, and gifts from John and I and other family members. They were excited and all got some things they wanted. Santa brought every one a "need, a want, a wear and a read".  That was really fun and I think we will ask him to do that every year.

Then Christmas night when they went to bed John and I pulled out gifts for another Christmas. We really wanted them to know what Christmas would be like with out the blessings and love of other people. So, for one day that is what it was. And it was good. Then Isaiah woke up Dec. 26 and came into my room and told me that there were more presents under the tree. I told him he was dreaming and to go back to bed :) It didn't work. So, at 7 am we got up for another Christmas. Abby did not believe him but got up any ways just to see. The kids were all SO excited and it was so so fun to watch them be surprised and get more presents. It was an amazing Christmas.  We also went and looked at Temple Square lights that night. We love doing that.

So, an update on John: He is doing ok. He has had colds off and on for a few weeks. He had a regular clinic appt early last week and they said if his cold got worse to come in. So, we went in on Friday because it was getting worse. And he has had a low grade fever that is not going away. They ran a bunch of tests and he has metapneumovirus. It is basically a chest cold. And they can't really do anything for him. Although they do want to give him IVIG (basically an immune system booster of antibodies). That should help him fight it better. He feels ok, just has a cold.

He is definitely getting his appetite back and eating better. He still has feet swelling some days, but it isn't bad. Other than that nothing new. Which is good. We like to be boring.

We did have out 17th wedding anniversary on Dec. 27. We didn't really do anything. John had this  cold and kids were out of school. We had in n out for dinner and played games. This week we are going to Midway to see the Ice Castles and go out to eat though.

HAPPY NEW YEAR! We are hoping for a healthier year and less hospital stays  - like 0 would be great :)