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.
It has been suggested more then once that I should write a blog during this little adventure we are going on. My first thought was no way. I hate proof reading things and I can't spell. So consider this your warning. I am going to write things and not proof read them. I will do my best but.... Think of it as a challenge to figure out what I was trying to say. To all of you English majors I am truly sorry.
Monday, December 29, 2014
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.
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 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.
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,
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.
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.
Saturday, November 29, 2014
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.
Monday, November 24, 2014
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.
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.
Saturday, November 22, 2014
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.
Thursday, November 20, 2014
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.
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.
Wednesday, November 19, 2014
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
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
Monday, November 17, 2014
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???
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???
Sunday, November 16, 2014
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.
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.
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!!!!!
Sunday, November 9, 2014
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