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.

Let the games begin

Today is the day.  Once again its been a hurry up and wait day.   Sara Jane was at the hospital at 5:30 this morning for her 7 am appointment with the marrow vampires.  The harvest went pretty well. SJ's back might beg to differ.  It took the doctors an hour longer then they planned.  Her bones are tough and her marrow was not really in a hurry to leave her body.  They were able to get enough thank goodness. After the harvest the marrow is sent to red cross for processing.  Then it comes back to Jordon and is put into him just like a normal blood transfusion.  I feel like their should be fire works and music but the nurses tell me it pretty anticlimactic. I may have to see what I can do to liven it up a little.     

I might get shot for posting this picture. SJ gets a little taste of what Jordon's life is like.  She is spending the night right next door to Jordon's room.

I would like to introduce you to Jordon's alter ego BAIN (from batman).  Jordon has to wear this lovely ensemble whenever he leaves his room.  

The marrow should be here with in the next hour. They are medicating him right now.  WAHOO.  

Transplant Thursday

Yesterday was the last day of Chemo and ATG.  Today has been a rest day, giving his body a day off before they transplant.  Tomorrow we start his journey to recovery.  The last couple of days have been harder on Jordon.  His body is really feeling the effect of the Chemo.  The staff here at the hospital have been wonderful.  The nurses amaze me, I don't know how they do what they do. They have been an amazing help not only physically but emotionally.  

I have had a few people ask about the medical trivia.  We don't have the answer.  They could not figure out want caused his temp to be different. 

I am not on my A game.  I have a hard time keeping focused on things and today I walked out of the cafeteria without paying for dinner. I made it on the elevator and to the next floor before I remembered. The guy in the cafeteria just laughed.   

Thanks for all of your love, support and prayers.   Here's to a good day tomorrow

13 Pounds Lighter

The saying  "Doctors make the worst patients" does not stand true for Jordon.  The doctors on the first day told him the chemo is really bad for your bladder and kidneys so you need to make sure you are drinking and we will hyper hydrate you via IV.  Well Jordon did what he was told and drank 5 liters the end result was a very puffy man.  He had put on 13 pounds of water weight.  I don't think I will ever complain about being bloated again.  Those were not the toes of the man I married. Talk about a crash diet he peed out 9300ml of fluid today, and the feet I know and love are back.      
As I sit on my butt writing todays update Jordon is hooked up to his Chemo, riding the stationary bike in his room and watching football. I love watching the nurses faces when they come in to check on Jordon and find him riding  his bike. 

The nasty effects of the ATG that we were told about have not seemed to effect Jordon.  (Thanks for small miracles)  Now we will wait and see what the Chemo effects are, they usually hit about a week later.  Some people have nausea at this point but Jordon has not!! 

My mom brought the kids down for their first visit. They were so excited to see their dad, seeing me was just an added bonus.  It was so wonderful to see their faces and hold them. The kids didn't know what to think about the central line in Jordon's chest.  I don't know if either of the girls will have a stomach for medicine.  I loved Addie's face when I told her the nurses had to measure how much Dad had peed.

Here's to praying tomorrow goes as good as today.  

Random Medical Trivia 
 Jordon had a fever when they took his temp in one ear and his temp was normal in his other.  Thinking this was strange they used another thermometer and it was the same outcome.  
No he had not be laying on that side. What is your guess???  

Let the games begin

We have now been in the hospital for almost two days.  Jordon was given his first round of Chemo yesterday evening.  It didn't make him sick at all, the nurse told us he may start feeling the effect in a few days.  The Chemo is really hard on bladders so they are giving Jordon meds that make him have to pee. On top of that they are giving him so many fluids I am surprised  his eyeballs are not floating.  He is up going to the bathroom every hour and almost fills the containers.  As it gets close I always think  ''Ï can't stop once I start it stings" ( those from my generation will get that)

Our first night in the hospital was LONG.  It was worse then having a new born.  The nurse would come in every two hours but with out fail just as we were falling back to sleep the IV poll would start beeping for some reason or another. I lovingly started call the poll "the baby"  The baby is beeping, the baby said that the IV is done, the baby has an air bubble.  

Today Jordon is having his first round of ATG.  It is a nasty drug nicknamed shake and bake.  It is living up to its reputation.  Jordon is freezing and aching pretty badly. They are giving him lots of benadryl so luckily no matter how hard he tries he can's stay awake.  Before they gave him the meds this morning Jordon rode the recumbent bike in his room for 40 min.         
  

Jordon has a tunneled central line. For those non medical people.  It is a permanent IV up by his collar bone.  It has three ports so they can run IV and draw blood and do almost everything else with out having to poke him. This is great for him and the nurses I was about ready to   He will have the central time until March.

We are soooo grateful for face-time.  It is comic relief visiting with our kids.  McKay's little face poking on the screen while one of his sisters are talking to us.  Maya spending more time watching herself make funny faces then talking.  Addie keeps me informed on everything that is happening.   

Background

This last summer was amazing.  We spent amazing time together as a family.  Jordon competed in a number of Triathlons, and did very well.  We went to Lake Mead for an amazing few days this fall as a farewell to summer. While we were there Jordon participated in a testosterone driven game of  knee board wars.  Imagine nine people knee boarding behind one boat.  It was a battle to the last man still on his board. (Jordon won twice) This was the first time we noticed  Jordon was bruising easier then normal. After we came home Jordon continued to bruise.  The week leading up to his blood draw he started to feel more tired then normal.
On October 11, during one of Jordon's night shifts he decided to have his blood drawn to check his CBC levels.  The results were not what he wanted to see.  He called me that morning after his shift ended. The oncologist was going to meet us at eight to do a bone marrow biopsy. After the biopsy Jordon was given a platelet transfusion. We didn't get the results for the test for a fews days.  Each day seemed to be an eternity.  Jordon and I appreciate all those who prayed, fasted for use during that time.. 
When we got the results Jordon and I were in shock.  
APLASTIC ANEMIA. 
Here is Wikipedia's definition 
 Aplastic anemia (AA) is a disease in which the bone marrow, and the blood stem cells that reside there, are damaged.^[1] This causes a deficiency of all three blood cell types (pancytopenia): red blood cells (anemia),white blood cells (leukopenia), and platelets (thrombocytopenia).^[2][3] Aplastic refers to inability of the stem cells to generate the mature blood cells.

It is most prevalent in people in their teens and twenties, but is also common among the elderly. It can be caused by exposure to chemicals, drugs, radiation, infection, immune disease, and heredity; in about half the cases, the cause is unknown.^[2][3]

The definitive diagnosis is by bone marrow biopsy; normal bone marrow has 30-70% blood stem cells, but in aplastic anemia, these cells are mostly gone and replaced by fat.^[2][3]

First line treatment for aplastic anemia consists of immunosuppressive drugs, typically either anti-lymphocyte globulin or anti-thymocyte globulin, combined with corticosteroids and cyclosporine. Hematopoietic stem cell transplantation is also used, especially for patients under 30 years of age with a related, matched marrow donor.^[2][3] In February 2014, the oral thrombopoietin analog eltrombopag was approved by the FDA for the treatment of patients who are refractory to immunosuppression. This additional treatment option is the first of its class, and represents a significant advancement in the prognosis and treatment of patients with aplastic anemia.^[4]

We were told at that point Jordon would need a bone marrow transplant. This started what Jordon and I call the hurry up and wait time.  We hurried up and got tests done then waited for results.  We hurried up and got test kits to Jordon's siblings, then we waited for them to arrive.  His siblings hurried up and sent their vile of spit back, then we waited for the results. Hurry up and get to LDS hospital for more tests, then wait for more results. We found out Mckay was not a match then we waited to hear about the other two. Jordon and I were both at our breaking point when we got a call from LDS Hospital saying that Sara Jane was a perfect match. Now we hurried up to get her here then we waited for more tests.  

During this hurry up and wait time Jordons immune system became weaker.  He ended up in the Hospital in Pocatello for three days with a neutropenic fever.   His buddies at the Hospital made sure he was well taken care of.  The nurse on the floor who took care of Jordon after he was admitted said you would have thought the president was coming.  The staff from the ER wanted to make sure he was well cared for.  

Our waiting was coming to an end. LDS hospital email and told Jordon if all the stars align he would start his treatment on November the 14th.  All of the stars did align and Jordon was admitted to LDS hospital November 14th.  

We both want to thank everyone who has helped us up to this point in our Journey.  Jordon and I are both humbled and in awe at how amazing people have been during this time.   Words can not express how we have been carried by all of you during this time.  Thank you!!!!!         

Mad Maxx