10 days in . . .

John has been at the hospital for over 10 days now. Things are going pretty good so far. For the first few days he had pretty much normal energy levels and we were walking a few miles a day outside. It was nice while it lasted :) He had his 4 days of chemo and had some pretty had nausea. It seems to be under control now and he hasn't thrown up in 3 days :) Really hoping it stays that way. He had his 2 days of ATG transfusions (6 hours a day) and that went just fine. That one can be kind of scary and cause really high blood pressure and breathing trouble. John had no issues with it. And yesterday he got his new stem cells!!! He was on pretty heavy doses of benadryl for 3 days. That was pretty entertaining.  For the most part it made him really really tired. It also made him really talkative when he was awake and it made him say lots of things that make NO sense. And then he would get mad at us if we laughed at him. So glad benadryl is done. 

So, now - we wait and see and pray and hope and have faith. His blood counts have pretty much zeroed out now. It takes about a week for the cells to start to engraph and start making their homes. My goal is to have John home by Fathers Day. Every one tells me that is early - I know. But I think it will still happen. 17 days away, he just has to get his numbers back up and not have any infections or any GVHD. I can hope - right :)

Here is John probably about day 3 while we were walking outside. Yes, that pole goes with him every where.

This was on Sunday when Grandma brought the kids to visit. They get so bored and it is so hard for them to really get a good visit. We were glad John could still go outside.

Here is John and his Mom.

Oh - and John's favorite night. Matt and Kanani surprised him with a visit. They are friends from BYUH and live in CA. They are in Utah for some family events and decided to surprise John. He was SO surprised and they visited for about 2 hours - he loved it. I was so sad I wasn't there to see them. 

Here is John and I right before he got his new cells! It was an exciting day.

So a few odd things: One day John has a PA that we had never seen or heard of. (he was just helping out for a few days while the hospital floor was super full). He came in and was talking to us and then says, "Oh - I've heard of you, I know you". He works for Utah Cancer Specialists and even they know who John is - kind of funny.

The hospital also has a Dr. who is from India who is helping out for a few months - We love her. I still can no say and write her name. Dr. S...... :) She just comes in and talks and talks and she and John talk stories for like an hour every day. She loves John. Even when she is not assigned John she comes in after her shift just to talk. To tell us about her family, show us pictures of her daughter, tell us about her dog, her garden, stories form her practice . . . She is hilarious. She came in this morning and then said when she was done with her patients she would come in just to talk! I think John loves having there there to just talk to. 

This time John gave the charge Nurse his "favorite nurses" list. Kind of fun and they have been super good about giving him his favorite nurses. His nurse today - Becky (who I think has now been with him 4 days) is new to us but we really like her. Well, Joy spent the afternoon with John today. Becky came in and was talking to Joy then asked if she knew so and so (can't remember the names). Joy says "yes". Turns out Becky married their son and her mother in law lives with them. Her mother in law got a christmas card from Joy and Becky saw it and ready the newsletter because it mentioned having a son with cancer who was being treated at LDS hospital. Becky put 2 and 2 together, so my in laws know her in laws :) 

Overall I am doing ok. It is so hard to do this and I am exhausted. But so so grateful for all the help from family and friends. Joy is here this week and my Aunt comes next week. So good to have there help with the kids. It is so hard on me because I want to be every where. I want to be with the kids and with John. It is nice having Joy spend her 2 Saturdays here with John so I can be home with the kids. I have my moments and the other day I really really missed my mom. I just was wishing she was here and helping. I cried all the way home from the hospital one day. Right now all we can do is pray that this works and that takes a lot of faith.

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.