Life is becoming normal....

It's been a while since we've posted...and I guess you can say that's a good thing.  There is the old saying "no news is good news" well, that's kind of where we are at.
We went to Disneyland.  The trip was so anticipated and the kids were very surprised when we told them.  We ended up telling them the night before so they could get things organized with us.  They couldn't believe it and I've never seen the house cleaned up so fast.  Josh's mom and sister again surprised the kids when they met us at the airport that morning.  Those are memories we will always have.  Precious memories because we knew that they could have easily not happened.  It was a long busy week and at one point or another EVERYONE cried.  But that's to be expected in a highly stimulated environment.  Josh rented a scooter and that helped a lot.  We also we given a special pass that allowed us to cut to the front of all the rides.  ALL the rides.  It was incredible.  I'm not sure if I'll ever be able to go Disneyland again knowing that I might have to wait in lines.  We are a spoiled bunch now.  The trip was harder on me than expected.  I felt a little overwhelmed at running the trip, manhandling the children and keeping watch on Josh while he scooted around enjoying his time.  But, Josh's mom and sister helped a lot.  All in all, I'd do it again!  It was an amazing experience for the family and, like I said, there are many cherished memories.  Here are some snapshots....

After we got back from our trip...Josh prepared to get back to work.  He has been back since the end of May and doing great.  He is as busy as ever and his employers and coworkers have been great and very supportive.  

Our summer was full of kids, a trip to whistler, soccer and lots of cabin time at Lake Merwin.  That is the one place on earth I think Josh truly relaxes.  It's his little get away and we are soooooo blessed to have it in our lives.  We paddle boarded, swam and Josh even taught Noah to wakeboard.

Now the kids are back to school and we again find ourselves establishing a new routine.  

In the cancer part of our lives, Josh's numbers continue to get better.  In fact his new PCR number is 2.5.  There is a lot that goes into that number, but the short of it is that his starting number was 416 and it needs to be a 0.4 to be considered in complete response...kind of like remission.  It has gone down so fast and I think surprised even some of the drs.  We know it is because of our faith and the prayers that have been in our behalf.  We made a big change recently and left our oncologist.  He was great and it was hard to say goodbye to the team that has been with us every step of the way but we were given an opportunity to be a personal patient of Dr. Druker.  As you may remember, Druker is at the head of OHSU cancer research center and responsible for Josh's life saving medicine.  We have the CML authority of the world as our personal oncologist.  It is a HUGE blessing and we know it.  This means as therapy continues to evolve in the treatment of CML Josh will have first access to it.  We had and initial 2 hour appointment with him a few weeks and the biggest question we had was "what will the long term effects of the drug be for Josh 20-30 years done the road?"  His response still rings in my head.  "I wouldn't worry too much about it.  He won't be on it that long.  We anticipate a cure in the next 10-15 max."   YEAH!!!!! For the most part, we forget that Josh has cancer.  Taking his pills has become automatic and we are constantly busy with our little growing family.  Sometimes though, he gets tired, or a test result comes back a little skewed and the worry creeps back in.  I sometimes still have dreams of the first days and feel that heavy cloud of uncertainty and worry.  Looking back though, I know that we have been exponentially more blessed than tried.  I'm getting to the point that I am grateful for that part of our lives and what it taught us and how far it's brought us.  When your forget about cancer 80% of the time and your worries become children, household and getting more sleep, you can step back and say:

"Life seems pretty normal."

Hematologic Response!

This is Josh writing this blog entry. Today I learned that my white cells are back to normal! My platelets were also normal and my red blood cells are close to normal. This means that I have reached what is called a Hematologic Response. This is the first of three separate responses. It is possible the I could reach the other two by this time next year. Sometimes it takes patients 2+ years. I'm shooting for 1 though. My doctor seemed surprised with me reaching the first benchmark in my treatment already because it typically isn't reached this quickly. What usually takes 3 months took me 4.5 weeks! He told us to go celebrate.

The timing of this great news couldn't have come at a better time as we are leaving to Disneyland on Monday. I am looking forward to quality time with my family as this will serve as a great distraction from everything we have been dealing with here at home.

I am getting stronger day by day and there isn't a day that goes by that I don't thank my Heavenly Father for his hand in my recovery. I realize this is a chronic illness and something that I will need to continue to monitor but I am making great strides to be able to have a long and normal life. Thank you for all your many thoughts and prayers!
We will be back the end of next week with pictures from our trip!

Great results!!

It's been a while since my last post. Sorry. It's been a busy week(s). Cancer is still here but it's slowly becoming part of our lives, not all of it. We still have 3 young kids that don't stop needing food, love, fun, structure, assurance, rides, cubs, piano lessons, school routines.....etc. We are LIVING with cancer and a house full of little kids is living.
On the cancer front, Josh is doing great! Not just good, great! We are so blessed and humbled because we know that our prayers have not been the only ones headed to the ears of our father in heaven. I know that your faith has been used and your prayers have been answered. We feel them all. Josh's latest test results came back with astonishing results. Since our last post Josh quickly jumped on full dose tasigna. Four pills everyday. Two in the morning and two at night. He's taking them like a champ. He hasn't had any really serious side effects, some bone pain, a rash in his beard area, little compared to our morning of vomit a few weeks ago. These side affects are easily treated with hydrocortizone cream and Tylenol. Josh took full dose meds for 9 days and went in for a blood test....His white blood count went from 461 to 116!!!!! Normal is 6-12. We are definitely heading that way. We are trilled! Other test numbers went down too. Some even normalized! We are well on our way to our first stage of remission where his red and white count are normal. His spleen is slowly shrinking and we expect his side effects to subside as his body gets used to the medication.
So what are we doing to celebrate? We are going to Disneyland! The dr ok'd the trip. He did say that 3 months from now would be better (as josh should be feeling better than he has in years at that point) but Josh wants to go now with the kids and the dr didn't see a problem with that. We will be renting an electric wheelchair for him and Disney promises to pull all the stops so our trip can be magical! We are so excited and so blessed! Josh's mom and sister will be there as extra hands so Josh can go back to the hotel and rest. Following his schedule now, he'll be able to be out all morning through lunch, go back to rest a couple hours then be back out for the evening. Everyday he gets a little bit better and his schedule could change for the better by the time we leave. We are really excited for this trip and feel as though it will be a great boost for our family. It's still a secret for the kids however, SO DON'T SAY A WORD PLEASE! They know of a trip but not where or when. They only know that it requires a plane, bathing suit and will be lots of fun. So, May 6-10 we will forget about cancer and just have fun with our sweet family. Life is good!

A little bit if normalcy....

Josh is slowly, everyday getting a little better. He didn't even nap once today! We went to an oncology appointment on Monday after all our drama last week. After talking to the dr we are thinking that just possibly Josh's reaction wasn't a reaction to the drug at all. After Josh had his first round of tasigna, he waited the mandatory hour of fasting then went and ate a giant chicken burrito at the blazer game. We think he might have gotten food poisoning. Are you kidding me?!?!? The timing is ridiculous. All his his symptoms matched the food poisoning. The dr had never seen a reaction like that to tasigna. Ever. We have slowly started him back on meds at half dose, taken out the Prilosec and zofran and he has not had any side effects. So, tomorrow if tonight still goes well, we start on FULL dose tasigna in the morning. Wish us well.
In other news we had some normalcy come back to us today. Noah had his first official baseball game tonight. The whole family was able to attend and for awhile we all forgot about the cancer thing. Especially when Noah hit his big double his last at bat!

Miracles and Blessings

This cancer thing is a roller coaster of emotions. It dips and turns and brings the unexpected, but also has some great moments of smile and laughter. First off, Josh is doing great! We did lessen the dose to half of what he had before and remarkably, MIRACULOUSLY, he had no side effects. NONE. This is a huge victory in that it looks like we will be able to continue Tasigna...we just have to figure out the right amounts. He is not as tired as he once was and continues to have a good appetite, though you wouldn't know it, he is still really skinny for Josh. We need you all to know that we feel your prayers. We have seen them answered and continue to see our friends and family around us be the Lords hands. They have lifted us up when we are low and have brought help where we didn't even know we needed yet. Every time I begin to feel like I can start doing everything on my own, they come to rescue me when I realize that it's all too soon. I feel as though my friends know me better than I know myself. But the real truth is that my Father in Heaven knows me better than I know myself and prompts those around me to come to my aid. I know that we are receiving support and love from both friends and family here on earth and from angels beyond the veil as well. We are truly blessed. At times we are able to look at this cancer as a huge blessing-at times. My goal is to be able to forever think of this trial as not a trial at all but a time when we were nearest to the Lord, nearest to each other, nearest to our friends and family. I want it to be a dear memory, not something to be forgotten. However, this absolute acceptance will have to be a future goal. Some days now are very hard. Gut wrenching and tormenting. Some days it feels like our house is under a dark cloud. There is a thick sadness in the air. There is fear, doubt, worry, stress, anger and grief, all the things that Satan would have us feel and definitely not what God intends us to feel now. We fear the future, doubt the present and grieve the past. Sometimes we want our old lives back. We want to go to a time before cancer. We had our own plans for the future. We had just booked a surprise family trip to Disneyland (May 6-10th) that Josh had been given from work as an award. We were going to rip up our backyard and redo the lawn that the moles and weeds have destroyed. Josh wanted it done for Hudson this year. We were looking forward to spring break with the kids. A few days before "cancer day" we had sat down with the kids and all had a great time making lists of what we wanted to do. We had our own plans. We've learned that the Lord has his own plans. I've learned that many times before, but I guess I'm too stubborn to remember. When I look back at when my mom died, that tragedy, over time, brought me some of the biggest and brightest blessings and opportunities of my life. I'm learning that the Lord's plan is better for me than I know because he knows me. He knows my potential. And my potential reaches far beyond anything I can ever imagine. So, I guess what I am saying is that I need more faith. I need faith that on the other side of this deep, dense forest is a beautiful bright meadow that I didn't even know existed and is infinitely better than the field I was aiming for. I, we, just need faith. Our small faith has already allowed for large, unbelievable miracles. What could a little more faith do?

Marathon not a race....

Josh has chronic leukemia. I need to remember this. This will be a lifelong marathon the we will figure our stride to. I say this because Josh's treatment took a backwards step the past few days. As I said in the past blog post his first two rounds of Tasigna made him violently ill, gave him a massive headache, nose bleeds and dehydrated etc....we were not expecting that at all. We were ready for some mild reactions like itchy scalp, rash, or mild headache. Clearly something was off. Josh was sicker yesterday than he has ever been through this whole cancer process and was very close to being admitted into the ER again. After many conversations with the doctor we have decided to slow down. We are going to very slowly introduce tasigna into Josh's system.
He had a full 36 hours without the cancer medication and we've filled his system with antinausea and heartburn meds continually. Tonight he took half his usual dose of tasigna. We are hoping that the back up of Zofran and Prilosec in his body will help him do better tonight. If all goes well, he will get another half dose Sunday morning. Slowly we are going to see how his body reacts. We are all praying that we can find the right dosage soon and get moving on recovery. Lets hope we all sleep well tonight!

Time to fight.

We've had people say in the past two weeks that Josh can beat this.  Josh is a strong fighter.  We've heard people say that you have to fight cancer.  Honestly, until last night, it didn't seem like much of a fight.  It was more like waiting with the unknown in the pit of your stomach.  Last night we started the "fight" part.

Josh had a great couple of days.  He was finding that if he fought sleep off in the day that the nights went better and his mood and energy improved.  He even was able to go the Portland Trail Blazer's game last night with his brother.  He was slow in all he did.  But he was doing it.

Yesterday our "magic pill" arrived.  We had to have it shipped overnight from Seattle.  There are certain fasting restrictions when taking the medication.  Josh was scheduled to take his first dose (300mg) at 7:30pm last night.  He actually took them at the basketball game.

He came home feeling tired but ok.  No side effects.  We went to bed.  Josh woke me up at about 1am.  He wasn't feeling well.  His stomach was unsettled and he had massive heartburn.  He took some water and really just tossed and turned all night.  Symtoms got worse and nausea hit pretty hard in the morning.  Josh started throwing up so hard this morning that he also gave himself a bloody nose.  He took his morning dose of Tasigna and continued to decline.   I've been in talks with the doctor and nurses all day today.  Eventually it was decided that he not take tonight's dose of medication and let his body recover.  We are asked to push fluids and try to keep some food down.  He was also prescribed Zofran (my favorite anti-nausea pill while I am pregnant) and prilosec.   He is feeling a little better now but still in bed trying to sleep.  In the morning we are to call the Dr. and report on how the night went.  If all was better we will continue Tasigna, if not we are to go in for fluids and exams.  Right now we are all praying that his body FIGHTS and that it kills all those danged leukemia cells.

"That we might not shrink..."

It's Easter Sunday and I have pondered much on the Savior this week.  I've been involved in heavier scripture and gospel study this year.  I felt a sudden urging to get better, be better, be stronger about 6 months ago.  It was a powerful feeling and one that, I know, was meant to prepare me for now and the times ahead.  Looking back, there have been many promptings and signs that the Lord truly was preparing Josh and I to have the spiritual strength to take on this trial of cancer.  I have said recently that I can vividly and surely see our Saviors hand in our life in the past few years completely guiding and preparing us, why would he take His hand away now?  He wouldn't.  I know that.  It is not an accident that Josh has cancer.  It's not coincidence either.  We were prepared (as much as you can be) and the Lord would not give us more than we can handle.  He moved us here to Vancouver.  Josh knew the minute that we pulled up to this house (without going inside) that we would buy and live in this house.  He told me so before we opened the door and said that I could look around if I wanted, but this was it.  It was a feeling from God.  Here our son was able to have a teacher that got us the help we needed and let us know that what we saw wasn't wrong and that we and he needed help.  When we moved here, Josh was able to serve in church as a scout leader with another man.  That man worked for the company that Josh now works for.  He was instrumental in the decision that we made to change jobs and work for this company.  This company now provides us with the great health insurance and disability we are now fully taking advantage of.  And most powerfully now, about a year ago now, Josh felt prompted and urged heavily to quit caffeine.  Josh loved his Diet Coke and relied on it heavily to help him get through his tough long days at the office.  Having faith that the Lord asks that we not be addicted to a drug in The Word of Wisdom, Josh quit his habit.  It was very hard.  His body definitely wanted and thought it needed that caffeine.  Eventually, he was successful and has not had a sip of Diet Coke in almost a year.  After the initial detox he felt great.  He had great energy, was blessed to succeed in work and started to feel healthier. He was working out and eating better.  If Josh had not quit this habit, we would not have noticed his health slowly decline and see the symptoms of his cancer.  I know this.  He would have hid them with more caffeine or brushed them off as too much caffeine and stress.  These are just a few examples of how our testimony as grown in knowing the Lord has guided our life and that He will continue to do so.  These experiences and many others have not been coincidence, chance or our doing.
On March 3rd, 2013, two weeks before Josh's cancer diagnosis, we were in bed flipping channels on our TV.  We do not often watch BYU TV but this night turned to it and saw Elder David A. Bednar give an address to the young single adults of the church.  He words deeply affected us that night and we spoke in length of our feelings on his speech.  We talked of what it would be like if one of us had cancer.  We spoke of how we hoped we would have the same kind of faith.
Looking back, it as though Elder Bednar was speaking directly to us.  It was not coincidence that we heard these words two weeks before our trial began.  Our hearts were being strengthened to withstand the times ahead.  Times that only the Lord knew were coming.
Please listen to this talk.  It says exactly how Josh and I are feeling and trying to handle this time in our life.  It is so complete in it's nature that it could be the one and only entry into our blog and would say all the things that we might try to say ourselves for the rest of our lives.  Listening to this talked changed the course of our lives without us knowing at the time.  Only the Lord is capable of such "coincidence".  If I know anything, I know that now and will never doubt it.  As much as the cancer hurts and as much as we are still fumbling to know our new normal, I'm excited for the growth that we have experienced.  For the eternal truths that we have been taught, for the stronger bond that we have made with each other and with our Savior.


That we might not shrink.....Elder David A. Bednar

Tasigna will be our new best friend!!!!

Today was a good day.  Well, good as a cancer day goes, but we will take it!
We had another appointment with the Oncologist today.  All of Josh's bone biopsy results were due back from OHSU.  We were looking for the final confirmation that we are truly dealing with CML and that Josh carried the Philadelphia Chromosome.  
Our appointment was set to start at 9:30am.  We were on time.  The doctor was not.  Waiting all this week was very hard but somehow those few extra minutes that we weren't expecting were excruciating.

Dr. Steinberg finally came in and got right to business.  Here are our long awaited answers:

YES - Josh has the PHILADELPHIA CHROMOSOME
YES - Josh has CML
YES - It is in the EARLY CHRONIC stage
YES - This is VERY TREATABLE and CURABLE if we get a Stem Cell Transplant (not necessary       yet)
YES - We can get started right away!
YES - Josh should begin to recover within WEEKS!!!!!

We are so blessed.  We are so humbled.  We will forever be grateful for this kind of cancer.  This is a treatable cancer.  This is has been one great miracle.

Josh will start taking a drug called TASIGNA in the next week.  We've been told that if everything goes as it should we should see good changes in Josh's blood test only one week out!   This drug is a little more aggressive than what we originally thought Josh was going to be taking (Gleevec).  Dr. Stienberg and Dr. Druker's nurse feel that Tasigna is better for Josh as his counts are pretty high and symptoms pretty severe now.  The Tasigna should work much faster than the Gleevec would.

We left the office with a few more test to get (more blood labs and an EKG) so that we have a baseline to watch side affects against when he starts medication.

Josh spent the afternoon resting and working with insurance to pre-authourize the new drug.  He rested after that.  We both did.  It's been a long, long week and an afternoon nap was much needed.

Here is a picture of our family celebrating with Pizza.  We were so glad that Josh felt well enough to come out with us.  The kids loved the little bit of normalcy of having our family out together.  My sister is still here and it's made this experience far more bearable.  I'll always remember this time in our life.  A time of sorrow, fear, and pain but also hope, faith, love and miracles.
We count our many blessings.  Life is good.

Pizza never tasted so good!

Angel among us.

It's been a couple days since I've posted. Sorry. But there has not been much to report.
Monday was the first day all on our own. I thought I was ready. I thought, why shouldn't I be able to handle the kids and everything by myself? I was very wrong. The day started fine and I was able to get the kids on the bus. Josh, the baby and I had a very lazy morning. Soon, Josh got restless and wanted to get out. We headed to target for a few small things we had run out of and to get the Easter shopping for the kids done. Poor Josh only lasted about 15 minutes then had to find the lawn chair section to sit down. He stayed there until I was ready to check out. It's hard for me to see him have to sit so many things out. It's hard for him too. He has never been one to want to miss anything. I checked out and the was our big outing of the day.
The day times are not too bad. The baby sleeps in the afternoon and has been watching way too much Mickey Mouse Club House. It's after the kids get home that the drama really starts. Some of you know that Noah has struggled with some mental illness.. This past years has been full of trying to find the right combination of medicines for him. He has not been officially diagnosed as BiPolar (they wouldn't do that yet at his age) but has been medically treated as such. He also is treated for high anxiety. Josh and I have always had to be completely hands on to help him through the day. Homework is a nightmare. Monday was more of the same in that area. I was trying to get dinner, homework, baseball practice, a screaming 18 month old and whining tired kindergartener through the evening. Normally this would be hard, but doable. But this past Monday it felt like an impossible feat. I felt so alone. So tired. So outnumbered. Josh said "I was being kicked while I was down." It sucked. That's when Satan really digs in. I felt doubt in Josh's prognosis. I felt complete fear for the coming days and weeks. I felt that life would never be good again. I felt utterly defeated with no fight left. I balled up on the couch and stared into nothing. I was too numb to cry, think, move. I laid there for hours. I didn't want Josh to see me like that. I'm supposed to be his rock. I'm supposed to keep his spirits up. Finally I went upstairs. Josh was awake. All he said was "how ya doing?". I lost it. I cried and fell beside him on the bed. He just held me and let me cry. He knows me so well. I don't know why I tried to hide anything. He wants to be there for me too. We are going through this together. I couldn't keep up this pace. But I don't know what to ask for help with. Do you need help with the laundry? No, I can run a load, but I don't. Do you need help with child care? No, Mickey Mouse is doing just fine. Do you need help with housework? No, I should be able to mop the floor, I just haven't done it. I shouldn't NEED help, but how come I do? It told Josh that I would try again tomorrow and if I failed miserably again then I would reevaluate how and what help I needed.
The next morning my sister called. I tried to explain that I was ok. I don't think she bought any of it. Sisters just know. She said she would be here that night. I've never felt more grateful and guilty at the same time in all my life. I don't have my mom or dad. I have often felt that I was on my own. My sister made me remember that I didn't have to be.
Our Angel arrived last night at 10:30pm. She has changed everything. I feel like she knows what we need even before I do. The kids love her and she can make Josh laugh like no one else. The stress level has dropped dramatically and the peace in our home has increased. It's amazing to have my own family member in my corner. She has my back, no matter what, and that's a new feeling for me. I will be so sad to see her go on Sunday but forever grateful and humbled that she came. Thanks Jessie.
With Jessie here Josh's stress has lessened too. I think he is not so worried about me. He went for a massage today and that did wonders. Best $55 I've ever spent. I think he will need to go weekly for a while. Josh's goal all day was to rest so he could make it to Noah's first baseball game tonight. He made it. He was so proud of his son who shares the same childhood passion that he did. He even was able to play catch with Noah for a little bit. It made my heart burst.

While at the game I got a call from the Oncologist. I called earlier to get some questions answered and he was calling me back. Good news right now is Josh has a 2%-3% blast count. What that means is that his leukemia is in the early stages! Yay! We had been worried that some of his symptoms pushed us into a more dangerous stage of CML. But according to his latest blood results he is far from that! Also, his hemoglobin is up! Another huge victory! We are so blessed.
Tomorrow is scheduled for more lab tests and Friday our bone test results should be ready for our Oncology appointment. Friday is the big day. We plan to make a plan for treatment going forward and get Josh on the road to recovery. Dr. Steinberg said that we could see him feeling better in as early as a few weeks after treatment is started. We continue to pray and have faith that the Lord knows our hearts.

Gratitude

Hi there.  It's Josh.  I felt like writing this one tonight.  This morning I woke up and didn't have a night sweat.  After Church today I took a nap and didn't have a night sweat either.  This is rare for this not to occur and it seems the blood transfusion has increased my energy levels so I am not so fatigued and the symptoms have come down.  I am grateful for those who donate blood and give people like me the opportunity to feel better.

I was feeling strong enough to attend Church today.  Once a month at our church we have what's called a Fast and Testimony Meeting.  These meetings can be very uplifting.  Fasting is defined as this:
To fast is to go without food and drink voluntarily for a certain period of time. Fasting combined with sincere prayer can strengthen us spiritually, bring us closer to God, and help us prepare ourselves and others to receive His blessings.

Our church had a special fast today for me and two other men suffering with severe health issues right now.  All the members of our ward family (congregation) were asked to fast and prayer specifically for us and our families.  It was a humbling experience.  Sarah and I felt their faith and prayers immediately as we entered the church's chapel.  There are many great men and women of faith in our ward.  I know the prayers were heard by our Father in Heaven.  I am grateful for their sacrifice.  I knew that I would have the opportunity to speak with the congregation as part of the bearing of Testimonies.  I wanted my ward family to know that my testimony was being strengthened.  I wanted them to know that I knew my Father in Heaven was blessing me.  I wanted them to know that I was truly grateful for their help with my family this week and their continued service.  I wanted them to know that I know that families can be together forever through the Gospel of Jesus Christ.

As I looked out to the congregation I felt that people were genuinely concerned for me and my family.  I felt their prayers and am grateful to be part of something that strengthens me and gives me the courage to stand strong through this cancer.  It's funny as people use to shake hands with me at church and now all I get is hugs.

This week will continue the waiting game where I await the results of my bone marrow biopsy.  I know that I will continue to learn patience as I go through this experience.  I have decided that the theme I will focus on as I go through this is the same theme used by someone I looked up to greatly as she battled ALS.  This is found in Mosiah 24:15 "And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord."  

Lastly, I am grateful for the e-mails, texts, and phone calls from old friends and new friends which all give me the strength and encouragement to stay strong and positive right now.  Thank you all again for your support as I feel like I have a huge army rooting for me.  You're all amazing!

"Ya still alive?"

Josh has some great friends.  Friends that have been around since he was a kid.  Friends that don't treat him any differently than they always had since the big C word entered our life.  In fact the off-colored politically incorrect and razzing comments from friends and family have brought the biggest laughs and smiles.  It makes things seem normal, even if just for a moment.

Today Josh was feeling much better.  It's amazing what a little blood can do!  He had energy, spunk and CABIN FEVER.  This morning we were blessed to have a visitor bring in Josh's favorite lunch and a mixed CD of inspirational country songs.  They chatted for awhile and I could tell the visit meant a lot.  Josh's dad showed up as well to get our yard under control.  Our yard has been a disaster.  It was going to be a complete rehaul this year ... but more important things came up.  There are probably 25 mole hills and I really don't think there is one blade of grass in all the weeds.  He came and mowed, cleaned up and set another mole trap.  It was hard for Josh just to watch out the window, but he was so glad for his Dad to do it.  This project really weighs on him.

After lunch, I put Hudson down for a nap and I myself fell asleep on the couch.  I guess we were sleeping for a while.  Josh watched the TV, went and got the mail and eventually couldn't stand it anymore; he woke me up and said that we needed to get out of the house.  That's all I needed to hear.  I quickly grabbed the baby and we were outta there!

We drove to the Life of Christ exhibit that our church community puts on every year at this time.  Josh brought his new CD and a pillow for his back (still really sore).  It was nice to be out.  It was nice not to be going to a Dr or hospital.  It was just nice.

The exhibit was fantastic.  The spirit was so strong.  I think that we have been so focused on our faith right now that we were primed and ready for it.  I felt the peace and love of our Savior.

We bumped into a couple people who knew what was going on, but not too many.  Josh and I were a little concerned that it would be worse.  I really don't think we would've been ready for a flood of people with "I'm sorry" looks.  We did bump into our kids!  That was fun to see them.  They have not been home this weekend.  Josh's mom and dad and sister have done a stellar job at keeping the older ones busy and distracted.  They were heading into the building as we were leaving.  A quick hug and kiss was such a blessing.

Josh wasn't ready to go home.  He couldn't face our bedroom or couch again.  He's never been a big homebody.  We got the car washed, grabbed a milkshake and then dropped by his brother's house.  We have felt so bad that we've "rained on their parade."  Jeremy and his wife just had a new sweet baby on Friday.   Our whole family was so excited.  I had set my schedule aside to help all week.  Little did I know what was coming.  It was nice to see the 1 week old baby and chat for a little bit.  We love you Kai and can't wait to spend more time with you soon!  We didn't stay long, our nephew had a basketball game.  Josh still wasn't ready to go home.

So we stopped in on the Nix family.  Jason is Josh's good friend (and I swear his wife Laurie is a living angel).  Actually, we called Jason right away Monday night for that first blessing.  They have 6 sweet kids and Hudson loves it there.  They were so gracious to let us just show up for a couple hours and visit.  Josh climbed into their Lazyboy (again with his pillow) and laughed and chatted with Jason.  His spirits were so high and he truly had a great time.  Thank you Nix family.

Eventually Josh got tired and we headed home.  He checked his phone while I drove and found a gem of a message from an old friend.  It went something like this...
"Hey buddy I saw picture and read a blog, sounds like you got some kind of cancer.  What's up?  Give me a call."  Josh laughed so hard.  His friend Chip has a history of goofy voicemails.  Tonight when Josh called back Chip answered his phone with "So, you still alive?"

I can't tell you how much this helps Josh.  He has always loved to laugh.  That's just part of who he is.  He has a great laugh and has never really taken himself seriously.  I'm so grateful to these friends that treat him as he is.  He's Josh.  Always will be.  Yes, he's still alive.

Good Days and Bad Days

Today started as a bad day.  The reality that Josh has cancer comes in waves.  This morning when he woke up he said that for a second he forgot then quickly thought "oh yeah, I have cancer.  It wasn't a dream."  That broke my heart.  He seems to get weaker and more tired everyday.  I had to help him shower this morning as he couldn't get his incision sight wet.  He is very sore where they took the bone yesterday.

This morning was his scheduled blood transfusion.  We had to get up early as it takes a little longer to get ready for the day now.  We grabbed a few snacks, iphones and ipad and were out the door around 7:30am.  We were asked to be at the Oncology Center at 8am.  On our way in the elevator there was another man headed for infusions too.  We told him we weren't sure where we were going and he was very happy to help.  As we walked into the center we could tell that it was another friendly place.  The patients and nurses all seemed to know each other.  We could hear them make little inside jokes and comments to one another.  This gave me comfort somehow.  It felt as though this was a little club that now we were to be apart of and truly welcome.

It was a small center with about 15 large Lazyboy type chairs.  Every chair or station had an IV pump and stand, a visitor's chair, blood pressure machine and TV.  It was somewhat familiar to us as we've been to a place similar many times before while I was being treated while pregnant with Hudson.

I think Josh was nervous.  He seemed a little jittery and still hates needles.  So when the nurse told us there was a mix up in the paperwork as simple as Josh Christensen vs. Joshua Christensen didn't match and we would need to have new blood drawn and processed, he was pretty frustrated.  The nurses were so patient and gentle.  I am continually amazed at their level of care.  They redrew his blood and sent it down to the bank.  Then we waited.  It took over 2 hours.  Josh took the time to try and rest and listened to the music in his headphones.  Finally, the blood arrived and we started the transfusion.  He had 2 bags of blood and it took about 4 hours once we started.

During the transfusion we just waited.  Josh spent the majority of the time with his eyes closed listening to his music.  I read some of the many packages of literature we've been given on leukemia and CML.  We fiddled on our phones and really just tried not to think to much.  Josh still has a good appetite and ate a huge sandwich for lunch.  His continued appetite is a welcome behavior.

After the transfusion we headed home to an empty house.  I think that feels like a blessing and a curse.  It's been such a blessing to have so much help with our kids, but a quiet house just doesn't feel right sometimes and it brings reality to our hearts.  Josh's mom has been amazing and we could not do this without her.  I know the kids love being with her and I could not ever say thank you enough.  We rested most of the afternoon.  It was nice to recoup (the baby's been sick and not sleeping through the night) and we needed to rest.  Josh's brother came to visit on his way home from work.  Josh perked up and I could really notice more color in his face.  Jeremy is great in that he is able to joke and poke at Josh and be just like an older brother should.  I appreciate this and so does Josh.  After Jeremy left Josh seemed to turn a corner and had more energy and pep.  He called an old friend and seemed a lot like the old Josh.  We spent the remainder of the night chatting, laughing and catching up on our DVR together.  It has been some of my favorite time since Monday.

Grandma stopped by at 8pm to drop off the baby and to get the kids ready to head to her house for the night.   Josh came downstairs, hugged them and visited for a while.  The kids definitely know there is something wrong and we've talked at their level on what cancer is and what that means for us.  But, the distractions are what have helped so much.  Sleepovers, friends, new meals each night, women in the ward sending them to school.  It feels as though there is an army surrounding us and helping anywhere they can.  I could never say thank you enough.  It's been such a blessing to be able to be by Josh's side for everything.  We are a couple.  There is no one I would rather do this with.  I'm so grateful that he felt me worthy to be his wife for eternity.  We've always felt as ours was a special bond.  I love this man and know that I will just continue to grow in my love for him through this.

Now, it's just a waiting game.  We wait for bone results.  We wait for the anemia to get better.  We wait for a plan.  We wait for all this to feel normal.

One step further.

We were a little anxious last night as we posted our first blog post.   It somehow makes everything feel more real when everyone knows.  We have been overwhelmed by the outpouring of love and compassion for our young family.  You have made us smile and have lifted our spirits. Thank you.

Today was a big day.  Bone and bone marrow biopsy day.  We arrived at the clinic this morning at 8:30am.   Josh was asked for more blood labs and then he would be prepped for the procedure.  Josh is getting better at taking the blood draws.  Today the Phlebotomist named Mike was really good and Josh was so relieved.  I don't know if he'll ever totally be comfortable with all the needles.

The Oncology clinic was very welcoming.  They were kind, patient and very informative to us.  They knew who we were and why we were there.  You can tell that these nurses have a special love for what they do and who they care for.

I was not able to be in the room during the biopsy.  I waited in another exam room for them to return.  I read my Book of Mormon and prayed.  I read Alma 2 ( http://www.lds.org/scriptures/bofm/alma/2?lang=eng ) and was comforted in feeling that Josh was not finished with what the Lord had for him to do here on this earth.  Josh and I feel that the Lord is reminding us what is truly important in life and that we are truly here to serve Him.  We are going through our own refiners fire now and have never felt more of the Lord's hand in our lives as we have now.  He knows us.  He stands with us.  We know this.  We've felt it.  These past few days have been a spiritual lesson that will continue to teach us and mold us to be as the Lord would see fit.  However, this does not mean that we feel that all this will be taken away.  There is nothing to learn in that.  We know that he stands to strengthen us and will allow us to grow through this awful trial.

Josh has said that the Dr took his time and was very thorough.  He made sure that the area was numbed sufficiently.  Overall he was happy to report that it wasn't as bad as he had thought it would be and that he felt the Dr did a great job.  He felt at peace and truly felt the prayers offered in his behalf.  The biopsy consisted of making a small incision in Josh's lower right tailbone area.  A needle was inserted to take some bone marrow out for testing (aspiration) and that was unfortunately unsuccessful.  He tried three different times but Josh's white blood count is too high and the white cells were sticking together and could not be retrieved.  This is not uncommon and should not be a problem because essentially we can get the data we need from a regular blood draw.  They like to try to get marrow because that is the source of the problem.  They were successful in taking a piece of bone from Josh.  Josh was shocked in that it looked like a large, long, thick toothpick.  This bone fragment will be sent for more confirmation testing at OHSU with results coming back next week.  We are specifically looking for the Philadelphia chromosome.  We are 98% sure it is CML now and this will make it 100% and show us how to treat Josh's cancer particularly.

After the biopsy the Dr. was kind enough to take us into a room and break everything down and answer all of our questions and concerns.  He gave us a great website to look through http://www.nccn.com/files/cancer-guidelines/cml/index.html#/18/
and spent over an hour with us.

We had to make our first decision of treatment today.  Josh's most prevalent symptoms now are tiredness dizziness, nausea and night sweats.  We were told that Josh is incredibly anemic (as a result of the cancer).  His red blood count was very low and the Dr said that he has been living on .5 to .75 of what should be normal.  He told us that a blood transfusion could help this.  It would quickly get Josh's red blood cells higher and bring the white down so that he won't be feeling as sleepy, dizzy and nauseous.  There are always risks to a transfusion but believe this will dramatically change his quality of life in the meantime as we prepare to start a medicine regiment in the coming weeks.

So, tomorrow morning, Josh will be admitted into an infusion clinic where he will be given 2 bags of donor blood through IV.  This should take 5-6 hours and will not be painful.  We are welcome to bring food and entertainment as we sit together.  Josh used to sit with me as I was given fluid infusions while I was pregnant with our third child.  Now it's my turn to sit with him.

We are hopeful that tomorrow will have Josh feeling much better.

C.M.L.

Josh has cancer.  We've said it a million times in our heads.  We've even said it out loud.  And right now it hasn't gotten any easier to say but someday it will feel normal.  It is our new normal.
We are under 48 hours into this and everything is so new.  We are having a hard time wrapping our brains around the endless amount of information, opinions, chemistry and frankly stuff that at this point looks like it is written in some alien language.  The diagnosis at this moment is CML (Chronic Myeloid Leukemia).  And we've been told that "if you are going to get cancer, this is the one to have".

Josh had been feeling off for a few months.  Just a lot more tired, normal activities became mountains.  He was losing weight quickly and without real reason (about 15lbs in the past 6 weeks).  He was either freezing cold or dying of heat.  Dizziness was becoming a problem too.  Of course, this is all in hindsight now.  All we knew was that he felt off.  We had talked about getting a physical and he agreed but we never got around to it.  As Josh likes to say (he's a typical guy).  Finally on Monday night (March 18, 2013) he was helping at Noah's baseball practice and suddenly felt dizzy and light headed.  He started to stumble off the field but could not make it on his own.  Another coach helped him off the field so he could lie down.  He eventually drove home and told me what happened.  He looked pale and gray and I told him to get in the car.

I took him into urgent care not really knowing what I was going to tell them.  He just doesn't feel right, didn't seem reason enough.  But, I knew this was my chance for him to get that physical.  They asked some questions, got some random vitals (none of which were alarming) and then checked his body over.  His spleen was enlarged.  There was a bit of blood in his urine.  His oxygen level in his blood was a bit low.  That's it.  The Dr. felt that he needed to have more tests run but they couldn't be done there.  I think she suspected.  They sent us right over to the ER.

They took us back quickly after we got there.  We were asked the same questions as we were in urgent care.  We gave the same vague answers.  They decided on some blood testing.  Josh had never had and IV before.  Soon he'll be a pro.  They took 4 vials of blood.  The Doctor told us he was looking for anemia, mono and not likely, but possible, leukemia, just as a precaution.  They started fluids and left us in the room.  We didn't worry.  We just wanted him to feel better soon.  The nurse came back occasionally and said most of the labs were back and looked good.  They were only waiting on the CBC (complete blood count).  She left.  Later, he got overly hot again.  We paged the nurse for some ice water.  She didn't come.  I went out to find help and realized there was commotion and it that someone had just been brought in with a stroke.  I found a random nurse and asked for some water and went back to our room to wait for it.  This is where it gets hazy.  Two nurses walked into the room at the same time and it seems to me that they each were unsure as to what the other was doing.  One had water.  One did not.  The nurse without the water tried to stop the nurse with the water asking if she had cleared the liquids with the Dr.  She replied that she had overheard the Dr. and that we would be admitted to the hospital over night and that water was fine.  That was the first we had heard anything like that.  Why were we staying over night?  What went wrong in his blood and what did the CBC show?  I googled.  I shouldn't have.  Leukemia.  The symptoms matched.  But I talked myself down and decided to wait.  Eventually the Dr returned.  You could tell he hated it as much as us.  It was Leukemia.  His blood counts were off, especially his white blood count was over (400,000).  It had to be acute leukemia because he was too young for chronic.  We would be admitted and he would likely begin Chemo in the next couple of days.  It was the darkest, scariest, and loneliest moment of my life.  I couldn't believe it.  I just shook.  My whole body shook uncontrollably.  I was in shock.  Josh and I fired random questions, the Dr did what he could but told us that the Oncologist would meet with us in the morning and we could go from there.  We called in family and Josh was given a Priesthood blessing by his father and close friend Jason.  The spirit was there and we felt somewhat comforted.  As a family we were moved to another room on another floor.

We stayed in a small room with one bed and a cot for me.  The nurses were very sweet and brought great care.  Eventually, Josh's family left and he and I were alone.  The spirit was strong and we felt love and strength.  It was a long night.  There was little to no sleep and we watched most seconds just pass by on the clock as we waited for morning and the Oncologist.

At 4:30 in the morning, just as Josh was finally starting to sleep another nurse came to draw blood.  She needed 8 vials.  It was harder to find a vein this time and Josh was able to give 4 vials from one sight and 4 more from another.  After this there was no sleep.  In came an EKG tech, more vitals nurses, breakfast and Josh's mom.  Then we waited again.

Our First Miracle:

Just as we were discussing the upcoming chemo and Josh was on the phone explaining things to work, a man barged through the doors.  He introduced himself as an Oncologist, but he was not the woman we were told to expect that morning.  He asked Josh to get off the phone as he only had a few seconds and would not be able to stay long, then he asked:
What have you been told?
"Acute Leukemia and that we will be starting chemo in the next day or two"
Who told you this?
"The ER dr last night."
He was wrong.  You don't have Acute you have Chronic.  Chronic Myeloid Leukemia.  Big difference.  It's not treated with chemo.  It's treated with an oral medication and has incredible success rates.  The guy (Dr. Drucker) who invented the medication works out of OHSU.  This pill is a huge success.    I have to go to my practice.  The Pathologists was to look at the blood smears today to further confirm that it is CML.  I'll be back at noon to talk more.  He made it seem that Josh will be fine.

And then he left.

If you are going to have cancer, this is the one to have.  That's what the nurses kept saying for the next few hours as we waited, again.  Another Dr. came in a couple of hours later.  She was a general Dr. and further agreed with what the Oncologist had said before and told us that Josh's blood was undergoing a blood smear.

At about 1pm the Oncologist came back.  I don't remember much.  I just remember feeling that he further was explaining Josh's diaognosis.  He told us that we could go home that night and that he would open his practice on Thursday to do the Bone Marrow biopsy and talk to us further.  He explained that Josh will never be cured of cancer, but he could get to complete remission while taking this medication.  He will have to be medicated forever and watched.  We were told that it was very probable that Josh will take to the drug and could be feeling well in a few weeks.  We were ecstatic!  He left quickly again leaving us feeling assured.

We finished Josh's ordered IV fluid and were able to go home.

We still have many questions and concerns.  We don't know a whole lot.  But, here is what we know right now.

Josh has cancer.
We have been told it's Chronic Myeloid Leukemia.
He will mostly have this the rest of his life.
He could of had it for months to years before the symptoms showed up.
The Geneeva medication and others are very successful.
Tomorrow we have more testing and more answers.

Josh's symptoms are apparent.  He is tired easily and night sweating has become a huge bother.  There are many times in the day where he feels fine.  Today he went for a walk to see a friend.  Other times he is tired, dizzy and really just looks sick.  It's so hard to watch him struggle.  He is strong and has a great attitude and great faith through this.  We know that the Lord is right beside us as we walk through this.  We have felt his hand.  We know he has given us a miracle already.  That is what we continue to look for through this process.  We still have a long uncertain road ahead as we learn to live with cancer, but we will focus on finding the joy in the journey.  Tomorrow is a big day, and we would appreciate all the prayers you can utter.
until tomorrow....