A BUSY day

John had a big day yesterday. We had a fabulous appointment. We were at the hospital from 9 -2, but got a lot done. He no longer has to check his blood sugar levels, he does not have to do an inhaled pentamadine once a month (that has switched to a pill form), he has appointments every other week now, and just labs on the off weeks (which he can do at the hospital down the street from us), he does not need weekly chest x rays any more AND he got his central line out!!!

This is John and Ashley. She is one of our most favorite nurses. We didn't really meet her until John's last hospital stay when he was so sick. We had seen her around but John had never had her. We LOVED her instantly. Well, I did. John does not really remember. She did so much for us and was really there for me when things were so scary. She came in to say HI to us when we were at John's appt yesterday. We miss her.

And - there goes the line. John was so excited to get that thing out. He has had it in for over 9 months. Now he has to get poked once a week, but he does not even care. He is so happy. This also opens up our 45 min window from LDS too since he is no longer high risk for infection from his line. But, we still have to talk to the Docs before we go any where. 

OHHH - isn't this the best picture. 5 years ago yesterday we were placed with Isaiah. He was 2 1/2 and the cutest kid ever. He was scared and confused, but adjusted pretty good. John and Isaiah even look a little alike in this picture :) 

Just some "stuff"

This is Rebekah and I. Her husband Chris is battling AML at LDS hospital. They have had a tough past few months. They have 3 little boys and live about an hour from here. He had his Allo trasnplant on my birthday (Oct. 28). Well, he actually had a haplo transplant. He did not have a single match in the registry :( His sister was a half match and they used her. Haplos (half matches) and kind of new and there isn't much out there on long term results. Rebekah and Chris also lived in Laie for a while. He worked at PCC and we know some of the same people from there. Although they were there way after us. They too moved to Utah a few years ago with out knowing why. And we have actually both had visits from Elder Bednar. We love them and pray for them every day. 

Yep - those darn flu shots. I took a picture of Abby because I knew she would not cry :) I actually do not believe in flu shots. They seem to always pick the wrong strands and we rarely get the flu any ways. But, with John having NO immune system the Docs really try to enforce that we all get the flu shot (and not the mist because it is a live virus). Jenna and Isaiah totally freaked out, the rest did fine. Glad that is over with (for a year).

A few days ago I got a phone call from the city of Taylorsville. Some one gave them our name as a family that has had a hard year medically and financially. And they wanted to bring us Thanksgiving dinner. It was so so nice and I totally cried. We really are ok and we had dinner all planned. But the city had the donations. On Monday night the city youth council brought us our food. They are all students at Taylorsville High and it was so neat. Here we are with them except the one girl who took the picture. We love our city.

Kind of boring

I'm trying to blog more often :) When there isn't much going on, there isn't much to blog about. But one of our favorite Docs, Dr. Ashe says, "keep it boring". That is actually a good thing.

It has been a good week. John has been pretty tired though. He is off of steroids and now is on hydrocortisone. It is only 5 mg a day - which is what his body should be making. His adrenal glands are supposed to produce it but they are a little lazy after a transplant. Eventually they will start making what they need to. John is thrilled to be off steroids and getting rid of all the nasty side effects. He still checks his blood sugar levels 3 times a day. But, he has not needed any insulin this week. The puffiness is starting to slowly go away and he is looking more and more like "John". His appetite has gone down and he isn't eating as much - but that is kind of good. He was eating more than he should when he was on steroids. 

He is very excited for this week. His central line should be coming out on Tuesday. As long as his numbers are fine, it can come out. That is what keeps us in this 45 min window from the hospital. When you have a central line in, you are at a high risk for infections. Luckily he has not had a single infection from his PICC line or his central line. He got his PICC line in, the end of October last year, so it has been just over a year. He can't wait to shower with out having to worry about a line :) Although it will probably HURT to get this sucker out. They literally just pull it out and since it has been in for 9 months, there is scar tissue built around it.

Other than that, life is pretty boring. We are all excited for Thanksgiving this week and then Christmas break is 3 weeks after that. This year is going by so fast.

The holidays are here

The tree is up. John was so excited to be feeling better this Holiday season. Last year really sucked for him. The  chemo was making him so sick and tired and nauseas. He did not enjoy this time of year. I pretty much did everything, with some of the kids help.  So, this year the tree went up a little early. It was great having John's help. 

John is feeling pretty good. His steroid dose is down to 10 mg a day. That is almost a regular dose. His blood sugars have been almost normal this week. At one point he was taking up to 40 units of insulin every day. This whole week I think he has only had 2 units. He is still a little on the tired side. His physical therapy and occupational therapy are both every other week now. Clinic appts are still every week and will be for a while. But, he did switch his micro fungun med. That one was through his IV line and now it is an oral med.  It is a suspension med, and is super nasty, but if his liver continues to do good with it, he should be able to get his line out in a few weeks. That has been our goal. Because that central line is what keeps us in our 45 minute window from LDS Hospital. 

Our good friend Houston got bad news this week.  He has AML and had a stem cell transplant on Sep. 30. He had a relapse and his cancer is back. It is in 69% of his marrow, and 3 weeks ago it was 0%. This is devastating, but no one is giving up. Those docs will keep trying and trying. We are praying hard for them. He just turned 29 yesterday.

And then yesterday my neighbor told me that her husbands brother has multiple myeloma. AHHHH! He is 44 and has 5 kids. I hate stupid cancer. 

Doing ok.

Overall, John is doing ok. With his steroids going down the Docs warned him he might be fatigued. Well, that has definitely hit him. He has a hard time getting up in the mornings and he always falls  asleep in the morning for a nap and usually just drifts off several times during the day. His stomach has been a little bothersome - but he has not thrown up. It just feels yucky. His swelling is starting to go down a bit and his hair is all starting to grow back. 

Today he snuck in and out of church a few times :) He came late to sustain Michael a Deacon, then came to practice a song our family is singing in the primary program next week, then came to see Michael get his Faith in God award. He always wore his mask :)

Because John was going to church he got dressed for church (obviously) and I HAD to take pictures!! I can't remember our last family picture!

So, no news really. John is doing ok and we are still taking everything a day at a time. 

Pictures

This is what we have been up to this past month :)

This is us at Silver Lake - we love it there.

Silver Lake.

Silver Lake one week later. A week later, it was all melted :)

John was able to go to the Priesthood session of General Conference and take Michael and his brothers. They were great and they all got to sit in special seating for "handicaps". 

John and I on the Alpine Loop. We kind of pushed our 45 min window one day (with permission from John's care coordinator). We drove the Alpine Loop and loved it.

John gets tired a lot still.  He literally falls asleep playing on his ipad.

OH YAY! Light the Night. It was so great to be part of this event. We plan on going every year. We had so much fun and it was super neat to walk the walk and see all the ballons. White for survivors, red for supporters and yellow for those that have passed on.

This is John with one of our most favorite PA's Shar at Light the Night. We love her :)

John at Light the Night. 

John and Rebecca. We met her in the halls on East 8 one day - she is amazing and always so positive. It was so fun to run in to her at Light the Night. She had her Allo transplant on John's 100 day post transplant day. 

On Friday our good friend Houston was released from the hospital. He has been in the hospital for 4 months with one one week break. He had his Allo transplant on Oct 1 and is doing great so far. Denise and I have become great friends over the months. I am so grateful for her and our friendship. And we are so so happy they are finally home from the hospital. Tonight I took the kids to go meet them at home.

Another month and time for an update

HOLY MOLY - where does the time go? :) We have had a busy month! John's 100 day post transplant meeting went really well.  They could not have hoped for a better result than what has happened. All of the tests were great. Just some weird things: John has an antibody to his donors red blood cells. The donor always win, but it could take a year or so. So his red blood cell (RBC) count is low. But, it has been holding its own and he has not needed a transfusion for it. They check weekly and it has been ok. The other odd thing is that he had a bone scan that was really odd.  The reader said that his bone lesions were significantly worse than his last scan (which was in May). This is perplexing?? The Dr. says if it was that much worse then John would be feeling it and would be in pain and his cancer # would not be 0. So, they were not worried and will just repeat the test in December.  His platelets are still going up and almost normal.  His liver numbers are all almost normal. One of them is not quite normal, but close to it. John still has a clinic appointment weekly, physical therapy weekly, occupational therapy weekly and his regular therapist (who he loves - she used to be a social worker on East 8). So, he has appointments 4 days a week. His steroid dose is now at 30 mg a day (as opposed to 180) and has been going down 10 mg a week - so this week should be 20 :) Getting so much closer to being off of them. His swelling is starting to just barely go down. His energy level is getting much much better. He can go up and down the stairs with out holding on to the railing and can get off of the floor by him self :) He also has started driving a little bit. But because his blood sugars have been high it effects his vision and he can't see great. But, his blood sugars have been coming down and that has not been a big issue at all.

We have had 2 non scheduled visits to East 8 in the past few weeks though. One time because John was coughing a lot. They did an aspiration and nothing came of it - just an annoying cough that now is almost gone. Then one week ago he was complaining of pain while urinating. I though it might be a UTI, so he called and I took him in. Turns our there was bacteria in his urine but he also tested positive for BK Virus. This is a nasty virus. It is eating at the lining of his bladder, so he literally pees blood and it is painful every time he pees. AND he has to pee every 30 min or so. So, he really doesn't go anywhere these days. It could take weeks - months to run its course. Kind of super annoying.

It may be a long winter - I hope not though. Last winter he had pneumonia twice and that requires a hospital admittance :( Hoping to avoid that this winter. Overall John feels pretty good and is doing as good as could be expected.

Here are so before and after pictures of steroid face swelling - called cushing sydrome:

This is when we were leaving the hospital after John's 3 weeks of hell in July. He is with one of our favorite CNA's Ammie.

This is John and I about 2 weeks ago on the Alpine Loop drive.