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" :)