Time for the Allo

I can't believe it is here. John has been admitted to the hospital for his allogeneic (donor) transplant. He was starting to feel so so good and almost normal after his auto transplant. Which I guess is the plan. They want him as healthy as possible when doing a tandem transplant this way. It should get the best results.

Last week we had an appointment with Dr. Ashe. She said they could not have asked for a better outcome from his auto transplant. All of his numbers were better than they had hoped for. He was at 1 % cancer cells - which is great. We are so happy that transplant went so well.  John was feeling great last week. He went golfing twice, we went to the Aviary, out to lunch twice and to a Bees game. He did a bunch of yard work and worked on all the kids bikes. He fixed things around the house. (I kept him busy).

 John and I at the Bees game.

John with his brothers, Dave and Jeff at the Bees game.

He was admitted yesterday and should be in the hospital for 4-6 weeks. His goal is 4 weeks. If it is up to me, it will be a little shorter (one day) so he can come home on Father's Day :) As long as there are no major complications he should be home in 4 weeks. But, one of the drugs they give him to help prevent Graft vs Host Disease (GVHD) can actually put him in ICU with breathing problems.  I REALLY hope we can avoid that. He can also get mouth sores from the chemo. The sores can actually be through out the whole gut. It can be super super painful. But, since he avoided it with his auto, hopefully he can avoid it with this one. (the melphalan they used for his auto is known for mouth sores, this chemo drug - not as much).

These first 2 days have been pretty uneventful. When we got there yesterday we literally sat in the room and talked to the Nurse, CNA, PA and his care coordinator for about 2 hours. Just talking and laughing :) We went for a 1 1/2 mile walk yesterday. They started some meds last night and had to do a sample of the chemo this morning. Pretty uneventful so far. Chemo actually starts Thursday and is for 4 days. Then 2 days of the scary drug and then transplant of the 29th.

The great thing about this is that it is potentially a cure for John. That is our plan. His body has responded so well to everything, we are praying that it continues to. We know that things can go very wrong, but we had no choice. If we don't do this, he will die. His body is strong and as healthy as can be - so - HERE WE GO!!

AHHHHH - well, the week actually started off ok. On Sunday the weather was pretty nice and we went downtown to temple square after church. It was a gorgeous day and the kids all loved being out and running around.

Michael took this picture of John and I.

I also painted one of our bathrooms this week. It was REALLY bugging me. I have been wanting to paint in forever. I finally just did it and am so glad I did. So, there, a few positives things :)

As for John, he is actually feeling ok. Energy levels are slowly going up and we still walk most days and he eats pretty much everything now :) I think he has even gained like 2 pounds back.

This is just my bad time of year. I have a love/hate relationship with Mother's Day. 26 years ago my Mom passed away the day after Mothers Day when I was 11. So, that is never good. I just always have a hard time with Mother's day. 

Early this week my sister Blair went to Hawaii. Blair is single, has a good job and travels a lot. I was just super jealous of this one because she is on Oahu (my and John's home for 6 years). I miss it SO much. But, not a big deal. Then my sister Emily calls to tell me that she is flying out to join Blair. This is when I lost it. (Also, a sore point with me is that a few years ago Emily, Blair and Lauren all went to Hawaii and did not invite me and I was really hurt). So, here we go again. I am not mad at either of them, just mad.  For the first time, I really was mad at God and so jealous and LIFE IS NOT FAIR. How is it that my sisters are vacationing on Hawaii and I can't even pay by bills, feed my kids what they want and have a husband with cancer!!! It was a bad day.

So, the week moves on. John has to have a colonoscopy today. So he had to start "prepping" for it yesterday. It was AWFUL!! And I was not even the one going through it. Then Michael comes home from school saying he threw up at school. OH man, long night! John threw up some of his meds and had to start his prep all over, then he was literally running to the bathroom ALL night. Michael threw up 8 times last night (and about 8 more today - poor kids has not stopped). I have to get up with every sick kid every time because John can not be around them. So, I maybe got an hour of sleep last night. I am so exhausted.

John's colonoscopy went good. They took a few biopsies and will have the results in a few days. Although they are not worried about any thing. He is SO glad that is over. John and I have an appt next week with one of his Dr.'s to go over his donor transplant. I can not believe he is admitted in only 9 days. We are all super stressed and not excited about it.  I HATE this. Life is not fair.

Doing pretty good

There hasn't really been much to blog about lately. John has been feeling really good. He still can not do everything he wants to do. And we were just saying there is no way he would have enough energy to be working every day. But, he is able to help around the house and with kids a lot more. He usually sleeps until 8-9 am every day. But, gets up and ready and asks me what I need help with. He has been helping me in the yard, still walking almost every day. Most food tastes pretty normal to him - finally!! He is starting a bike rack project. It should be pretty simple and gives him something to work on. 

Last week John had arranged for me to go away for a few days! I really need a break and it was fabulous to go play with Linzi for 3 days. John was home and got kids to school, did homework with them, dinner, bed time. He did it all and even went grocery shopping (just early in the morning when not many people are there). He was EXHAUSTED when I got home. I fired him and he took a nap in the hammock for 3 hours!  The pictures above are John and I at Thanksgiving point. Linzi came and the 3 of us went there for a few hours. We rented the segways and had SO much fun. The best way to get around there.

On Saturday our family had won tickets to the Hogle Zoo. It was so nice to go and the weather was perfect. We got up and went right when they opened knowing it might be kind of busy. John wanted to go and did great. He just did not go inside any of the buildings and kept his distance from the crowds. It is so nice having him feel pretty good and able to do some things with us.

John will be admitted to the hospital on May 20. His infusion transplant will take place on May 29. We are hoping he is only in the hospital for 4 weeks. The Dr.'s say 4-6 weeks, we are aiming for the 4 weeks. He goes in 3 weeks before the last day of school. We are all kind of nervous. I can't believe all that has happened over the past 7 months. It is all so crazy and everything has happened so fast. It is scary knowing this is it - this transplant is the end, it works or it doesn't. There isn't anything the Dr.'s can do at this point after the trasnplant. They will keep a very close eye on him and help with what they can. I think one thing I really don't like is that no matter what it is something that will always be on my mind. He will always have the chance of Graft vs. Host disease and who knows what it can attack? We are hoping nothing! But the cancer could also come back. So, it is something we will always, the rest of his life, have to worry about. Right now though, it is one step at a time and getting  through the transplant. Also today we found out that his liver function is high! It was high after his auto transplant but they were pretty sure it was from being on TPN nutrients for so long. It eventually came back down to normal but has now been going back up consistently. So he has to go see a GI specialist this week and hopefully figure that out. AHHH - one step at a time.

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.