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.