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.

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.  

     

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.  

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,

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.

Thanksgiving

We have had a busy week.  My mom and dad came for a visit Tuesday. Bless Big Reds heart (my mom)  she drove down with my Dad went back to Pocatello, and turned around Wednesday to bring our kids down for Thanksgiving. Kolay, Matt and their two cute kids came down to spend Thanksgiving with us also. I don't know how we would have done this without the support of our families. We had a great thanksgiving surrounded by family.  

Jordon had an amazing thanksgiving dinner at the hospital  PB&J. Before you start thinking I am a horrible wife, just know that was what he wanted.  

The kids turn Jordon's bed into a carnival ride. Mckay make the bed sit straight up and then use it as a slide. The girls laid on the bed pushing all the buttons. I feel bad for the nurses.  The call button is right next to the bed controls.  I just told the nurses I will find them if we need anything, and to just ignore the call button. Addie and Maya play pictionary on the stainless steal  panels on Jordon's closet.  Mckay caught us all off guard as he pulled the front of his pants and underwear down. He pulled his bubble tape gum from his underwear to all of our surprise. When I told him that was not OK he told it was fine that was his pocket.  

Mckay informed me  I was now his grandma and Grandma Red was his mom.  The first time he said that it about ripped my heart out.  Now I just laugh and say yes I am.  I will spoil you rotten, fill you full of sugar, keep you up late, not give you naps, and then I will send you home with Grandma Red aka MOM.  BAhaha.  

We had a little celebration for Maya's birthday Friday morning in Jordon's room.  Maya is now 7 years old.  Its amazing how time flies. We were trying to make it as special of a day as possible.  I tried to talk her into going out for breakfast but she was not really interested.  Her requests for the day were ice cream, (the hospital has great ice cream) and subway for lunch.      

Not a whole lot has changed as far as Jordon's medical updates. He has started to shed his summer hair in preparation to grow in his thick winter hair.  His hair started to fall out yesterday.  I brought the buzzer this morning and we help the process along.  Its a good thing he has a nice looking head.  The lack of hair really brings out his eyes.  

We should start seeing the effects of the transplant some time next week.  Then its up to Jordon's body to see what happens.  We have been told that some peoples marrow just takes off, others is really a slow process. We are hopping for the take off approach, but  we will have to just wait and see.  

Jordon's stomach has been pretty upset for the last two weeks but seems to be getting a little better. We are hopping the damage the chemo did to his stomach is starting to heal.  He has not has the energy to ride the bike in his room much but he has been going for walk through out the day.  Thanks you all for your love and support through all of this.        

Blessings

I don't do serious very well so bare with me, but I need to share some of the more tender moments we have had. 

 The first few days here was extremely hard.  Jordon and I were both trying to come to terms with our new normal.  Sunday morning rolled around and I was having a pity party.  Life is not fair, bla bla bla.  Then at about 9:30 we had a knock on our door.  It was two senior couples from our church here in Salt Lake City.  They were here to make sure we were doing OK, and offered to bless and pass the sacrament in our room. It was so wonderful to feel the comforting arms of our Savior as we bowed our heads. Like clock work four different people showed up this Sunday so Jordon and I could once again take the sacrament. There is such a comfort knowing our Savior knows exactly what we are going through. He may not take away our trial but he will help us along the way.  His help may come from an overwhelming peace when you can't take much more, or sending someone your direction who helps ease your burden.  I am humbled by the love Jordon and I have felt from our Savior, I know he loves us and knows of the burdens each of us carry.




I have some advice for anyone who is admitted to the hospital.  When they ask your religious preference tell them LDS or Mormon.  You are pretty much guaranteed  a visit from at least two people.  They usually take the form of the sweet grandparent type. They will make sure you don't need anything, and tell you how cute and wonderful you are.

One week done!!!

With  all of the extra time we have, Jordon and I have decided to put this time to good uses.  We are working on becoming master pole dances. The steps get a little easier everyday.  I am still struggling with the end of the hall turn.  Its a very complicated move, but I will prevail.

Medical update
The doctors say everything is moving along ideally.  He had a nurse tell him their was an aplastic anemia patient who was out of the hospital in 14ish days.  They didn't know who they were talking to. This gave Jordon a goal.  As long as we don't have some strange complication don't be surprised if Jordon does the same.  Exercising is suppose to expedite recovery  so we have been walking a lot.  
The criteria for Jordon to be discharged is appropriate white blood cells counts, for us non medical people that means he needs to have a working immune system.

Our kids are doing wonderful.  They are getting to spend lots of time with cousins which is always fun.  We are so grateful for facetime.  I love seeing their faces not just hearing their voices. They are settling into life at Grandma Reds.  

SJ is doing OK.   She is swollen and sore but doing well. For the first time in her life she has a butt.