Sunday, February 15, 2015

Everything is Awesome!

Hey all, 

Sorry for the delay in posting. We take the saying to heart in our family that "no news is good news."

Overall things are going very well. We're back home in Pocatello and making occasional trips to Salt Lake for checkups and lab work. They've taken out my central IV line and the remaining hole in my chest has since healed. It's nice to not have the extra hardware hanging off of me and makes me feel a bit more normal. My hair is growing back in, though I still look like a chia pet if it gets too long. It isn't back to steel wool status, but definitely coming in.  

So far everything is going as planned as far as blood counts and recovery. My counts are nearly back to normal and should get totally back to a normal level as my medicines are weaned off over the next few months. The staff at LDS hospital seems to be pleased with where we're heading. I will hit my 100 day post-transplant Feb 28th. Apparently this a milestone with transplants and means the next step to getting back to normal. This also means a bunch of tests, including another bone marrow biopsy, and they'll start to taper my anti-rejection meds. (Not too excited to have another hole in my hip, but apparently it's necessary) Best case scenario I'll be done taking immunosuppressive meds by June, never to have them return. This Fall I'll start on my newborn shots, since all that immunity is since gone. Kinda crazy!

The transplant team and I negotiated for when I can go back to work. Final decision is after flu season, so I'm planning on heading back in March. I can't wait. For now I'm just trying to stay busy and healthy. I do a lot of projects around the house and stay away from sick people and big groups. Some people joke that Keelie really got me sick so we could make up for lost time after residency and finish the honey-do list around the house. Sounds pretty drastic if you ask me. It's been nice to see one another, and the honey-do list is getting smaller. I kind of feel like a germ-a-phobe hermet and can't wait to be back to a normal schedule doing normal things. Overall I'm just grateful to be still be alive and well enough to exercise. I've been able to ride my bike, run and swim a bit due to the incredible weather. 

Thank you again to all of you for your thoughts, prayers, visits, and help financially. We truly could not have done this without such an amazing support group! While I'd very much like to forget the last few months, I hope we'll never forget everyone's kindness and be able to pay it back and be more generous and kind ourselves. 

At the start of this we said that we weren't out of the woods, but at least know the path. It's nice now to say that we're nearly through the woods and at the end of the path. That's always the best part of a hike anyways! 

Take care!


Monday, December 29, 2014

Still out and about

It's been a while since the last post. Thankfully things have been pretty busy and the time has gone by quickly. Jordon is still out of the hospital and doing well. His blood counts are still climbing slowly but surely. We go into the hospital a couple of times a week for blood draws and a clinic visit with the bone marrow docs. They say everything is going well, it's "just a long process." Other than feeling tired he's doing great. We hang out a lot at the apartment, away from sick people and big holiday crowds. We were able to do our Christmas shopping in the off hours when the locals weren't all out. (Must be what the celebrities feel like) We keep thinking his hair will grow back in, but still no sign of a new helmet. All in good time. Some peach fuzz came in on his face, it looks like a 14 year old's first mustache, sexy.
Christmas was wonderful. All of the Mickelsens came down for a few days. We ate Christmas Eve dinner at Crown Burger (definitely a first on Christmas Eve, but awesome) and walked around Temple Square to see the lights. The crazy ones ended the cold walk with milkshakes, the rest of us had hot chocolate. We were all together for Christmas day to open presents, eat and eat and eat, and watch basketball and Christmas movies. It was so good to be together. We had a bunch of snow start to fall on Christmas Eve and all day on Christmas. What a beautiful, white Christmas!
After Christmas the Marshalls came down for a visit. Again we ate and ate, opened presents and just enjoyed hanging out. All the visits made spending Christmas out of town a great time and made it a novelty for the kids. We even had a white trash Charlie Brown Christmas tree for the apartment. 
The kids have been with us for Christmas break. We're pretty cramped in the apartment, but it's fabulous to be a family again. We're all ready to be back home, but so happy to be together and out of the hospital. Addie learned how to play Chicken's foot with the dominoes and we do lots of little art projects and games (with a good chunk of Netflix cartoons)
Christmas was very special this year. It seemed like the general feeling was one of gratitude more than presents and Santa. Gratitude for being healthy, gratitude for the miracles we've witnessed with Jordon's treatment, and gratitude to be together with people we love to celebrate the birth of our Savior this season. We're very blessed. 

Sunday, December 14, 2014

Early Parole

Wonderful news! The Bone Marrow Transplant team decided to give Jordon early parole based on good behavior. He was discharged from the hospital and is thankfully back to the condo and out into fresh air. (As fresh as Salt Lake air gets)
His neutrophils have been slow coming, as you know, but he's met all the other requirements to leave the hospital for the last week. The doctor's comment Wednesday was "I know you're impatient with your counts, but even I'm getting impatient." Thanks to his and Jordon's impatience they gave him a "magic" medicine called Neupogen that basically lights a little fire under his bone marrow cells. Yesterday they quadrupled and bought him a get out of jail pass.
He's still pretty weak and tired, but feeling well overall. More than anything he's just glad to be out of isolation and back to a semi-normal life. The small condo feels like the Mini Dome compared to that small hospital room. 
The next couple months will still be full of clinic visits, lots of medications, and more than anything, avoiding getting sick while his immune system is growing. Any sickness with a fever lands him back in the hospital. No Jazz games, Chinese buffet, Walmart, or sharing drinks (not so easy for me, I sample everything he has), but plenty of walks outside and afternoon cuddles (wink, wink).
Thank you all for the continued prayers and love. Merry Christmas!


Friday, December 12, 2014

Patience is a Virtue

Tomorrow will make 4 weeks in this box.  Jordon's doing freaking amazing except for his stupid neutrophils.  They are acting like a hormonal teenager they don't know if they are coming or going.
One day they are at 100 the next 300 then right back down to 100.  

His platelets  are coming up steady. Right now its looking like he will need another red blood cell transfusion.    

Our kids are still doing good.  Maya has had a cold and gave it to her brother so I am heading to Pocatello today to spend some time with the kids, sense they can't come here to see their dad.

Once again thanks for all of your love and support.

Tuesday, December 9, 2014

I am Not Alone

I have had several close friends and family members ask me "How are you really doing."  My answer to this is usually "I am really doing ok"  but every once in awhile everything is not ok.  I had a rough night Sunday evening.  I felt like the weight of everything was pressing on my shoulders. I felt lost, out of control, scared, tired, overwhelmed, I felt like a failure.  I could not help ease the burden Jordon is carrying. I can't make it better for him.  I felt like a failure as a mom. My kids come for visits and I hold and love them, but I can't make little Mckay understand why his Dad is sick. Maya fights tears on and off the whole time she is with me.  When it's time to say goodbye she about rips my heart out. I do my best to keep it light and make her laugh but I usually end up crying with her.  Addie has been a rock, she does not cry she is always worried about me, making sure I am OK.  I want to take some of the pressure off of her but I can't. I am well aware these trials will make my kids strong, better people, but at times like Sunday night the burden of it all presses on my shoulders to the point its hard to breath. I feel guilt as I sit in a hospital room drinking diet coke while my Parent juggle our three kids with their already full schedules. 
Sunday night I was ashamed of myself as I sat on the chair in Jordon's room heaving sobs, with Jordon attempting to console me. He is fighting a sickness that could take his life and I am not strong enough to keep it together. I sat numb on the chair as he struggled with his IV pole so he helped clean off his bed so I could lay down, so I wouldn't pass out. I was so upset with myself for making his burden even heaver, I just shut down my emotions, it was easier not to feel. My drive from the hospital to the condo I felt numb.As I laid down to sleep  I said my prayers but shut out all feeling, I just went through the motions not asking for the peace or comfort I so needed. I went to bed feeling inadequate and alone. 
I woke up Monday not feeling much better. I have a twenty minute drive from the condo every morning, leaving me plenty of time to think. While driving thinking about how alone I was. I had this amazing peace come over me and a thought entered my mind.  I am not alone. The Lord has been carrying me from the beginning, he has made my burdens lighter. I am not sure why but every once in awhile I must push the spirit away so the Lord puts me down just for a time, allowing me to feel the weight of my trials. Looking back on my low time I can not imagine going through this without my Lord and Savior. He does not make me carry the load for long, he is always right there waiting for me to ask again for his strength.

Most days I really am doing ok.  Most of my drives to and from the hospital are singing along with the Christmas CD's in my car I do feel at peace. Our kids are really doing great.  They have their moments, but just like me they are doing good.  Jordon has seen miracles almost daily.  

I am aware Jordon and I don't even come close to having the market cornered on trials. Our burden is nothing compared to the load others have to carry.  I don't want to trade trials with someone else I will take what we have been given.  I will however be eternally grateful I have not had to carry it on my own. Thanks to those of you who have been praying for us, they are felt daily. 

OH YEA ON A LIGHTER NOTE:  JORODON'S NEUTROPHILS (the part of his white blood cells we care about) were 100 yesterday and today they are 300. They have to be at 500 for a few days for him to be discharged from the hospital.  Wahooo  Let hope they keep moving up quickly.  


Sunday, December 7, 2014

oNe MOre DAy dOwN

It looks like Jordon's body has decided to take the slow and steady route.  His counts are coming up very slowly.  I guess we are both suppose to learn patience.  Jordon is feeling pretty good.  His stomach is still upset about half the day.  His energy is about the same, he is tired but able to get up walk, and ride the bike.  I have to laugh at myself as I sit on the chair and watch him do a modified plank work out on the edge of the chair in his room.  

Jordon's visit from our kids was cut short,  Maya started coughing while we were in Jordon's room. We decided it would be best if the kids and I left, we are glad we did Maya has been a little under the weather sense.  The kids were at least able to celebrate Jordon's birthday with him.  After the mini party the kids and I went to the cafeteria for a fancy dinner.  I think they felt bad this was were I had to eat my meals.  They should feel bad for me they have been eating meals at grandma Red's house.  I am pretty sure they have had an endless supply of her cinnamon rolls.

Walking the halls with Jordon gets a little boring for the both of us.  I have been trying to get Jordon to walk the halls with only his hospital gown but he refuses, I can't figure out why. 
I am also thinking of purchasing two of the exercise balls with handles we had has kids.  I want to challenge Jordon to a race down the halls but I am pretty sure he would have an unfair advantage with his aerodynamic head. I don't know if my pride could handle it. I keep teasing Jordon this is the first time I am in better shape then he is. 

One of the good things to come out of our stay here is Jordon never wants to be a submarine captain. He informed me on our walk tonight,  he does not like being confined to small areas.  

Friday, December 5, 2014

Jordon's birthday

A year ago if you would have told me where we would be spending Jordon's next birthday I would have laughed at you.

Jordon has been having bone pain for the last four days.  This is a sign that the transplant is starting to take effect.  Jordon's neutrophil counts were at 100 and his total white blood cell count was at two hundred. This is the biggest jump we have see so far.  In order for him to leave the hospital his neutrophils have to been 500.  We still have a ways to go but it is a start.  Jordon's Doctor told him today that he should still be sick in bed, with a mouth full of sores. He is up active and feeling great.  We are grateful for all of the miracles we continue to see everyday. Thanks for your prayers we see the results everyday.

I know all of you are asking yourself what can we do for Jordon's birthday. Well here it is.  There is a dance here on the 8th floor some of the nurses have been know to do.  It is called the neutrophil dance.  Myself and the kids will be dancing tonight trying to give Jordon's counts a little boost.  If you are lucky we might even post a video.  Lets all do the dance today for Jordon.  If you are not up to dancing then a prayer would be wonderful.

Kids will be here today for a visit, wahoo,

Wednesday, December 3, 2014

Jedi Mind Tricks

I have had some people (my dad )  wondering when my next post is going to be.  Its not that I don't have time, or that I am not willing to write more, I will be totally honest our lives are incredibly boring right now.  I could put you all to sleep if I told you about the day to day life we are living. Don't get me wrong I am grateful for boring, that means Jordon is doing very well.  So well in fact he is starting to use his Jedi Mind tricks on the staff here.

As most of you know hospitals have protocols for about everything.  Here at LDS hospital on the eight floor they have a lot of them.  They want to know about his I's and O's  (ins and outs).  They want to know his calorie count, how much he has drank, how much he has peed, Jordon has managed to put a stop to all of this.  Some of it is because he is doing so well, and the rest is because of  his Jedi skills.  I don't know anyone who gets a full night sleep in the hospital but Jordon, again the Jedi mind trick. He has somehow managed to have his last IV medication taken down at 10pm. They take his vitals, and then do not come back into his room at 6am.  Everyone else has to have vitals at 12am and their blood drawn at 4am.  One of the nurses asked if she could come at least check on his breathing. He informed her that would not be necessary and he would make sure to let her know if he stopped breathing.  

Jordon has been blessed so much while here. Don't get me wrong this has not been easy, but it could be a lot worse.  One of the medications Jordon finished taking two days ago can cause really bad mouth sores.  We had a nurse tell us today its really rare for people to not get mouth sores, Jordon was one of the lucky ones.  

We are now waiting for the bone marrow engraftment to start.  We could start seeing results tomorrow, or it could be next week. The doctors say it is different for everyone and that we just have to be patient. Tomorrow would be the earliest they typically see any changes.  

My mom is always telling me to look for the positive, so here is one of the positives.  I now know what Jordon looks like a little over weight (water weight), really skinny, balding, and completely bald.  I am happy to say I have wanted to be his pole dancing partner no matter how he looked.  I actually think he looks cute bald. When his hair started to fall out he said he look like the sick, stray dogs he saw on his mission in Brazil.  

I was really lucky last week to have car trouble.  Jordon insisted I take the car to Pocatello right away to have it repaired, as he didn't want me having car problems in Salt Lake while he was stuck in the hospital.  I didn't tell the kids I was coming.  I showed up in the parking lot of church as they were getting ready to leave.  Mckay just stared at me for a few seconds not knowing what to think then gave me a big hug. I have never enjoyed time with my kids as much as  I have these past few weeks.  I live for their visits.  Bruce our dog gave me a greeting I will not forget. I was afraid he was going to have a heart attack he was so excited.  I don't know if Jordon's dad was as excited about my car trouble since he was our repairman.  Bless his heart, he spend all day Monday working on my car. We're very grateful.  

Jordon's sister Sara Jane could use some prayers right now.  She is still struggling with her recovery. Her hips are still very sore and energy is low. We're hoping she'll bounce back soon and get back to her beloved time in the gym. 

There otherwise aren't a lot of new things to report. We're hoping Jordon's cell counts decide to pop up this week and looking forward to watching them climb. They're the only thing keeping us in the hospital. We're otherwise counting our blessings and trying to be patient. It will all come in due time. 

Thank you for your prayers and love. They truly are felt and appreciated.