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.