The Kaspers

Good morning crew. We received the biopsy results yesterday afternoon. All good stuff. She got a rejection score of 1a (again) with 0 being the best and 4 being the worst. This is her 3rd 1a, she will get to a zero but we are definitely happy with a 1a. No biopsy now until Monday the 18th. Her heart pressures a still a little high so they have started a new diuretic to help pull some of the fluid off. They have stopped the blood pressure patch, which was causing her hair to fall out. Now her blood pressure is slightly higher.  We are watching it very close.  At physical therapy yesterday the therapist said she has not seen anyone in her age group this strong after transplant. Thanks to Mandi and Sandra and all the many walks we did. She now will go to therapy only twice a week  Sierra's has a blood draw next week then they will determine if /when to do the next IV treatment.

Last night we had a wonder treat. Aaron and Toni Kasper came by for a visit. So good to see them. They took us out to the Olive Garden. Lindsey had been wanting to there for many months and this was our chance. We have a great visit with an ole' Bakerite. The only problem he has is this fetish with the Cougars of that Provo school, that guy is a true blooded Aggie he just doesn't know it. His wife Toni had foot surgery several weeks ago and they are traveling to southern Calif to meet up with family at Disney Land. They are a couple that helps put life into perspective. They have both overcome some huge trials in their lives and I have ton of respect for them and their kids. Thanks Aaron and Toni for taking the time to visit with us.

Today we have a treat. In the play room yesterday Lindsey received tickets to the movie premier of Croods.  Lots of excitement in the air.  Stacy is cracking the whip so I need to get a going. 

Aaron and Toni Kasper

 

At the movie premier Croods. Thanks Kim P.

 

3 Weeks ago today

Lindsey went in for biopsy at 8:00 am this morning. Routine procedure to check for rejection. Sierra has her first IV treatment of Rituximab at 10 am, this should take about 8-9 hours. So Stacy and I had to divide and conquer. Wish I could be at the office, but that just ain't going to happen for a bit.

Lindsey is continuing to do well. Getting stronger and eating better. Last night she went with Megan to the church for an activity. I took them and did some work, while they had a glamor party with a bunch of other girls. It was the first time she was able to go out and do 'normal' kid stuff. Her and Megan had a great time. Sierra went to Emily's house for an activity leaving Stacy at the RMH with the boys. At the RMH, they had a kids 'cooking' class. Boys had a great time!

Stacy finally talked Lindsey into a quick visit to 3 West. That has been really interesting  to see how much she does NOT want to go there. She is almost fanatical about it. But once Stacy got her there and she could see some of her favorite nurses, it was okay. Probably good for her to go there, visit, and be able to leave.

Still planning on leaving for Oregon on Sunday and being there for a week.  Stacy and I think she can pull it off without an extra someone here, but we may call on our infamous aunt for assistance.  There will be at least one morning, probably Thursday, when she will have double duty with Lindsey biopsy, Sierra IV, and Gage, but we think with the wonder 'women' in the area she can pull it off.

Still can't tell you how nice it is to not have to be going back and forth to 3 West. Takes so much pressure off to not have to be rushing back, or figuring out how to get kids to activities, or get them to bed, or whatever. Feels like this huge load has been lifted.

Tonight there was a pizza party to celebrate Lindsey's return to the real world. A portion of the pizza sales went to the LPCH. It was a fun activity, but you could see Lindsey still isn't ready for big crowds. It didn't take her long before she wanted to go. Later on Lindsey, Megan and I went to Megan's basketball game at JLS. Lindsey got bored watching but I had a great time.  After the game, we went on a Daddy-Daughter-Daughter Date to Cold Stone. It was just a good thing to do.

Sierra finished her Rituximab treatment then went to the pizza party. The Ardvison's from Oregon stopped by on their way back to Oregon from southern Calif. It was really nice to see them. Stacy loaded up a bag of 'stuff' for them to take home with them.
 

 Finally got Lindsey back to 3 West for VISIT and nothing else.  She saw Marisa, Nichole, Denise, and Kim. These are just a few of her favorites.  They sure miss seeing our crew roam the halls.

 The boys cookin' at the 'Rainbow Shef' activity

 The pizza party at 'Pizza-my-Heart.

Galye Black, Liz Niccum, Sandra Zenger, Michelle Hansen, Lisa Perry, and Heidi Hart.

These are just a few of the great people that help with our crew.

 Megan playing at JLS

19 days post transplant, Tuesday night.

We are starting into a new routine. Lindsey has been doing really good. So nice to see her appetite coming back and asking us what is for dinner and how long she will have to wait. With the cannulas gone and the predisone on, her appetite is in the right direction.

Sierra is back at Jordan and seems to be getting back into the groove. Not sure if she is just telling us what we want to hear, but she is putting on a good show if she is not.  We all enjoy going to Megan's basketball games. It makes it feel like we are doing something 'normal'. Sure nice to have our little Princess with us and not have to be rushing back to the hospital.

Had a good visit with Linds about her hospital stay. I was asking her if she wants to go over to 3 West to say hi to her friends. Interesting... she is not ready for that yet. She of course will say hi and would love to see her nurses, but to go to 3 West. NO not yet. That wasn't the answer I was expecting. I thought she wouldn't have a problem with it, but I guess being confined to a unit for almost 8 months, regardless of how well the nursing staff did (and they did a great job!!) she is not ready to return, not yet.

Lindsey still has daily dressing changes on her cannula sites. The drainage has gone way down. No more of that gusher action.  Her blood pressures seem to be stable. Nothing like Sierra's blood pressures 6+ years ago.

I am still very busy with work. Working remotely is going well, but I am heading home next week for work.  There are just too many big issues and big projects that need my attention. The office is doing great covering, but I just need to be there.

Basically, we are all good. No complaints here. Everything we have prayed for is right here. 

Good Question!

Stacy and I forgot how relaxing a Sunday could be. For the first time we didn't have to rush home from church. We weren't waiting for phone call from the hospital. We played around in the RMH playground before and after church. We even went to the Zenger's for dessert. That was so nice. We never did any of this stuff before. We felt too guilty not being with our Princess. It was the first time since early June we went out as a family. It was just a nice day.  I remember 6 years ago our first outing with Sierra. It was a party at the Gee's. Never forgot that and the relaxing feeling it was. Today was no different.

Stacy is doing daily dressing changes on Lindsey's cannula sites. They are looking much better with just a little drainage. Still very painful though, packing those strips into those open holes. Lindsey just hates it, but knows it must happen.

Sierra is heading back to Jordan tomorrow, with her port still in place. She is feeling and looking better.  Sierra's next treatment is Thursday, same day as Lindsey next biopsy.  Stacy and I put together all the meds for Sierra, Lindsey and Gage. Interesting the differences in meds between Sierra and Linds. Many of the meds are the same but there are plenty of differences too.

Funny story....
A mother of a little girl in Hunter's class came up to Stacy after church with a funny story. Her daughter asked her, "Why does Hunter's mommy love his daddy?"   (good question!)
She said, "Well I love your daddy, why do you ask?"
"Well he has that hairy stuff on his chin."

There were several people today who were happy to see it go.  So am I.  But in a twisted way, I kinda miss the beast. Hopefully it never has to return.

March 2, Day 286, Saturday from the plane

Saturday, March 02, 2013
On the plane flying back to California. Good to go home for a week. Got a lot of work done at the office, but by no means caught up. Tax season is in full swing, and I need to be there to give direction regarding my clients.  I brought a bunch of work with me and ready to attack it on Monday.  Neat to see so many people who have supported and cared for us.    

Still a strange experience being in our house. Very quiet, everything in the same place I left it a month ago. But this time it’s different. I can actually see a possible end to this. A day we might actually be there. My outlook has changed now that Lindsey has had the transplant. It’s not this vast open sea of endless waiting, we can actually see the possibility of going home.  The big question is Sierra. Are these treatments working? Will the antibodies back off and quit attacking her heart? What if it is not an antibody issue? What if it is her coronary arteries? What if..what if..what if?!?  I sure wish the doctors would have shown more confidence that this will work.  All I can do is have positive thinking, faith in His plan and timing, prepare for the worse, and be grateful for what we have. 

Last week Sierra and I had a ‘worst case scenario ‘ talk. So what is the worst, worst, worst case? Another transplant.  I know this sounds crazy, but we could do it. Sierra is a teenager. More teenagers out there do stupid things making them possible donors as opposed to 9 year olds. I know a bunch of crazy teenagers back in Oregon that are flirting with being donors.  You know how you are.  Also, Sierra is a type A blood making it easier to match up than someone with O blood (Lindsey and Gage).

Crazy, but Stacy and I don’t have that ‘deer-in-the-headlight’ look when you mention transplant, Stanford, LPCH, and Palo Alto. We know the system (much to well). We know the doctors, surgeons, and social workers. We know what the commitment is and how a transplant works. We have a great support group in California and Oregon. 

Dr. Bernstein told us out of the 300 kids they have transplanted, about 15 have had to be re-transplanted. That’s 5% (there's the accountant in me).  He didn’t know or wouldn’t say how many have been re-transplanted as adults.   I am not saying it going to happen, nor do I want it to happen.  This is just my way of preparing for the worst. Anything worse than this is incomprehensible. We know of kids who have passed away from complications one of which had problems with the coronary arteries.

Her biopsy on April 4 will tell us a lot. They will look at her heart pressures and coronary arteries.  They will know those results immediately.  They will also do the usual tests for rejection which take a day or 2 for results.  Ole’ Dr. Perry could walk out and say everything looks fine, take a cracker and walk off. Or he could say there are issues.  Remember he is a man of few words, but we love him and the excellent work he does.  I have stopped trying to guess the results of biopsies.  There have been so many times Stacy and I were sure there were (or were not) issues and come to find out everything was fine (or not). 

So there you go. I trust in the doctors and their judgement. I have to, the human body is so complicated. Everything will work out.  I’m not just saying that, IT WILL. Many years from now we will look back and hopefully be able to understand and see the big picture. For now we hang on and push forward.

Stacy says Lindsey is doing well. You can see in the pictures the cute predisone cheeks. In the next few weeks Lindsey will be so puffy  you will hardly recognize her.  We will need to buy bigger clothes for about the next 6 months, then as they turn down the steroids, the puffiness will go away and ‘Lindsey’ will return.  Just know it is coming.  She did avoid the hairiness. The seizure she had related to the medicine made sure of that. The replacement medicine does not have the ‘hairiness’ side effect.  Her blood pressures have been under control, so that’s good.  But one of her blood pressure med's is causing her hair to fall out. So we are addressing that. 

I am planning on being here a week or so, then heading back for another week.  Tax season can be very demanding and hard on the family, even when we are in Oregon living like a ‘normal’ family.  

My parents are hangin’ in there. I know this has been tough on them. They have lived next to our house and for the last 8-9 months, they have looked at an empty house, just sitting there, so quite. Occasionally their son (the good-lookin' one) comes home and eats their food and drives their car, but then he leaves and it’s back to the quiet. Soon there will be kids running around livin’ it up!

Having said all this, I am very excited to see the family. For the first time since May 20, 2012, (286 Days ago) Stacy and I will actually have the entire family under one roof all night long. You can sit there and think about that!!

Boys on the floor, Linds in the single, Megan covering her head, and Sierra with thumbs up.

March 1, Day 15 - Exhausted (in a good way)

Today was a great day!  Lindsey had to get a blood draw this morning at 7:30.  Her and I took the shuttle to the hospital, we would have loved to walk, but they won't let her due to the construction and her immunosuppression.  We were leaving the hospital at 8:00 when we received a call to stay there until 9.  Dr. Katz wanted to see Lindsey's nasty ole cannula sights and make sure the drainage had slowed.  Needless to say, the longer we had to wait at the hospital, the grumpier Lindsey got.  She wanted to go shopping and do girl stuff.  Once we left the hospital, we were on our way.  We can't go far fresh after transplant.  They want us to stay close. The furthest we can travel is 15 minutes away from the hospital.  Which limits our outings, but we are happy for it!

Lindsey received a 1A on her biopsy from yesterday.  A 1A is as good as a 0 (no rejection).  We will take it!!  They are adjusting her Prograf again as her level was 8 and they want it 10-15.  All good news in Lindsey's behalf.  She has the weekend off, with a lab draw, Physical Therapy and school on Monday.  We are really going to enjoy this weekend when we can ALL be together.

Sierra checked in to the Short Stay Unit for her last plasma pheresis.  She has been pretty tired lately, but doesn't complain much.  Her left leg gets restless after a pheresis treatment.  Today it happened during the treatment.  The nurse that runs the machine said that everyone expresses different side effects.  They were going to draw some labs and see if that showed anything.  After her pheresis treatment they started IVIG.  This is a 12 hour infusion.  So,  I switched my mom and she stayed with Sierra while I took the other kids to take Megan back and forth to practice.  This evening Megan, Hunter, Lindsey, Gage and I relaxed with a movie at the RMH.  My mom and Sierra relaxed in the short stay unit where they will spend the night, coming home sometime around 5:30 am.

We are very excited to have Jason come back tomorrow.  Even though, I know he is very stressed with the amount of work he has.  Hopefully with all of us here at the RMH, he will be able to work better here.  Here is to another great day tomorrow.