Update from Seattle

Friday marked the last day for Jonathan at work before he starts the fight of his life.  So of coarse Scott and Jonathan worked really hard!  (Picture from Hangman Golf Coarse)

 

We spent Friday organizing, preparing the house, and packing for Seattle.  We made a stop in Ephrata over the weekend to play in the Marty O'Brien golf classic with some good friends the Bicondovas.  Then we made our way to Seattle where we were able to stay with our friends the Kleckners.  I got to spend some time with baby Colt and get some good baby medicine!  (moms out there know how good that medicine is!)

We were able to get an appointment Monday morning (today) at 7 am with Dr. "Chappie" Conrad.  He was recommended to us by drs. from Virginia Mason, Friends that knew Doctors, and actually just some random people that reached out to us after reading this blog.  (Thank you to all of you!)  Dr. Conrad is a professor at the UW and is one of the only doctors in the US that actually specializes in Osteosarcoma.  I will tell you after meeting him and the people at his practice, going to see him may be the best decision we've ever made!  Dr. Conrad actually invented the type of mechanism that replaces the portion of Jonathan's femur that will be removed.  It was very apparent today that this Dr. knew his stuff!  But not only that, but he was surrounded by the people that form up the team that would treat it, and knew specifically about osteosarcoma.  We were able to see an actually medical oncologist that went over in detail how chemo should go, what to expect, etc.  This Dr. is going to work hand in hand with our oncologist here so that Jonathan can still go to Sacred Heart here in Spokane.  I guess there is a chemo type that Jonathan is going to receive that "separates the men from the boys".  The side effects become very hard to manage and Jonathan will need to be closely monitored over that coarse of treatment.  It is comforting to me to know we will have all of these resources during this time. 

We did get a lot more information, and specific information.  Once again these doctors told us the chemo regiment would be different.  (3 different doctors, 3 different answers)  This is somewhere in the middle of the other 2.  So I think better than what we thought...  He will have 4 days on a dose of both Cisplatin and Doxorubicin (specific Chemo types).  Then he will have 2-1/2 weeks off.  Then the really rough stuff starts... 5 days of Methotrexate, 2 days off (he may or may not be making home after that) then another 5 days on the Metho, 2 days off.  Then repeat the entire cycle over.  This will take about 70 days all together. 

We decided we will then head back to Seattle for Dr. Conrad to do Jonathan's surgery where he will be in the hospital for at least a week.  We aren't sure how long before they will start him back up on the chemo regiment again, but he said you only have a window of 6 weeks.  So No longer than a 6 week break. 

We head back to the Dr. tomorrow to get Jon's PET scan, hickman cath (port for chemo) implanted, and then 1 last meeting with the oncologist before they start chemo first thing Wednesday morning. 

Please continue praying as we start down this very scary journey.  We know God is so much bigger than this!  We are not sure what his plan is for us, but we are trying so hard to trust his plan for Jonathan and our family.  Continue to pray for the boys... They need to get over this cold thing.  They are home with us, but still not 100%.  We have started talking to them about daddy going to the hospital, but we aren't sure how much they are understanding yet.  So pray for them as they begin to realize daddy isn't home like he was. 

I will update you all again soon!

Tonight I may sway from my typical scripture and leave you with a quote.  I got this from a friend at the gym and it gave me just a little more fight.  "When you are going through hell... Keep going!"  Winston Churchill   So as we begin our road through hell, we aren't going to stop to look at the scenery, our eyes are forward and we will run through this as fast as we can! (Thanks Bernie)

Formulating a Plan

On Monday Jonathan and I went in to see Dr. Howlett, the surgical oncologist.  We were disappointed when we found out he was in an emergency surgery and so we met with his PA.  But she was very good... However we didn't get many questions answered.  So I decided to wait to update the blog until now. 

Info on Chemo:  So we were actually given some miss information by the PA about this.  I think she was giving general answers regarding typical action with sarcoma, not necessarily a rare sarcoma such as this.  Up until today we thought that Jonathan would have 4 or 5 days of chemo and a couple weeks off over the coarse of 4 months.  Turns out after talking to the medical oncologist, "they are coming at him guns blazing and will leave no cell unturned!"  So what that translates out to is that Jonathan will basically be hospitalized for 4 months straight and will MAYBE be able to come home a day or 2 randomly.  This will depend on a lot of factors of his health, flu season etc.  We asked why they do the chemo before and after the surgery and the explanation makes a lot of sense.  First they are trying to shrink the tumor.  While the tumor is still in his body, they can measure the success of the chemo.  Second, they are basically figuring out what type of chemo this cancer responds to the best so they know exactly the formulation to give after the tumor is removed because then they have no way to measure if it is working.  The particles floating around his body are too small to see so this is how they will know it is the right stuff. 

Info on Surgery:  After the 4 months of chemo, they plan to do a surgery where they will remove just over half of his femur and replace it with a metal rod.  They will do a total knee replacement, and cut off a portion of the tibia to put in a metal cap on that bone to accept the knee replacement.  They hope to get back 80% mobility.  We had questions regarding reoccurrence, and if the type of surgery changed those statistics.  For example if we considered amputation, would that change the likelihood of this returning.  She said there are no statistics supporting that an amputation would lower the risk of reoccurrence.  Which right now, if everything responds as it should, that is a 6% chance. 

There are only 2 people here in Spokane that even know how to deal with this type of cancer, and only 1 of them has a facility that would offer the type of care we are hoping for.  So we have this huge question about how we even know we are making the right decisions because we really don't have much options on secondary opinions.  Well we found a guy!  We have received help from friends, and colleagues on options for doctors.  There is a specialist at the University of Washington that is actually a professor and specializes in this type of cancer.  We are trying to get an appointment with him on Friday or Monday.  The oncologist that we are working with here is an affiliate of the UW and are actually trying to work together on this case.  So this is a huge peace of mind.  We are just hoping we can get in before Jonathan will have to start chemo, because we are only pushing back the start of chemo for 2 days to try to get in to this doctor.  There is no time to wait around...

Tomorrow Jonathan is scheduled for more tests to get baselines on his heart, etc.  So I think an EKG or ECHO or whatever they call all these tests will begin tomorrow morning.  We have nothing on the books for Monday and Friday again because we are planning to head to Seattle one of those days.  On Tuesday Morning Jonathan is scheduled for a porta cath.  This is basically a heart catheter that allows the chemo to be placed directly into an artery in his heart.  After that minor procedure Tuesday morning, we have another apt. with the medical oncologist and then Jonathan will either check in that day to Sacred Heart or first thing the next morning and start chemo. 

As if this wasn't overwhelming already, we are really starting to feel very overwhelmed.  Obviously now with this new game plan, Jonathan will be completely unable to work.  So we will be going through the long term disability process.  The fear of Jonathan not really coming home for what looks like 9 months is terrifying.  What do we do about Christmas, birthdays, etc.?  What we are going to do with the kids during the day so I can be with Jonathan is consuming my thoughts.  How can the boys see their daddy when they aren't allowed on the cancer floor in the hospital?  How are the boys going to understand that daddy can't come home to put them to bed?  This gives me so much more compassion for the men and women that serve our country.  How do you separate from your family for such a long time?  This is horrible... But I guess you do what you have to do when you go to war.  And we are officially going to war!

I have so many people that have reached out and offered to help with the children.  I may be contacting those of you who I can remember even offered to try to set up some form of a schedule.  Germs are going to be a huge issue as we have to do everything in our power to keep the boys from getting sick.  Because it sounds like we have to have the perfect storm of health for Jonathan to even be around them.  I know kids share germs and so this childcare task is going to be no little thing.  Especially if it is going to last for 9 months.  It takes a village right?  I just hope this doesn't wear too much on them... Please pray for these little boys! 

 

We have already had a rough start to this entire process as the boys started the weekend with a cold.  By yesterday Jude had developed a fever of 102 and puked all over the kitchen.  How do I keep Jonathan safe from germs and get the house clean when Jude won't let me put him down.  We've all been wearing masks for a few days.  So my Dad left work, came to Spokane and took them home with him today.  Kirsten came and cleaned, sanitized etc. while we were at the doctor.  It was just a huge reality check that we really get into a jam if the kids get sick.  I can't possibly ask other mothers to get their kids sick too just to help us out.

As I wrap this up I need to take some time to thank some people.  My Neighbors are not just neighbors.  They are super heroes that have become our family.  Bob is now our lawn care guy, Karl is our gardener, Mary insists on laundry, Betts has come to get all the information on everything to do with house work. You know you are family when you fold each others underwear!  AND all of them (can't forget Bob & Sue, Derek & Deb, and Kirsten & Bryon) take the kids whenever we ask.  I can not express the gratitude we have for you!

Nikki Reed, thank you for setting up a FB group for outreach when we need help, and connecting us to people that want to bring food.  I was humbled by how fast that dinner sheet filled up!  I know a lot of you are looking for the link to the "Take Them a Meal" website.  Here you go!  http://www.takethemameal.com/meals.php?t=QUFN4124&v=227183be69   Thank you to everyone that signed up as well.  We did find out today that Jonathan's diet is not going to be as restricted as we thought.  For him in particular, protein and sheer caloric intake is very important.  The number #1 rule is still no sugar, but we can introduce in some dairy and additional forms of protein like beef occasionally.  So those of you who are signed up, you can make not of that!  I will go update the nutritional blog soon.

Kristine, Mary Lindsey, and Lindsey, thank you for all your troubles in trying to support our family.  I'm sure we will not be able to anticipate how fast the costs of medical bills will add up.  I know we have savings, and it is weird to accept help, but there is a little peace knowing we have a little more of a safety net.  http://www.gofundme.com/bxwja0  I do want to say though to people that are local, your time and help with meals, kids etc. is far more valuable to us than money.  If you want to help, please support us in that way if possible.  We will let you know when we need you!

Rudy Family... I have no words! Thank you, Thank you, Thank you.

Sorry about the long blog, and there are probably a ton of typos... but my husband has cancer so I don't have time to proof read!

Deuteronomy 31:6 Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

Jonathan has a cancer called Osteosarcoma

So after waiting about 2 weeks to hear from the Cleveland Clinic, we finally heard from the surgical oncologist today.  I wish I could tell you that the Spokane pathology clinic was right, and our doctor's gut feeling was wrong.  But I can't tell you how grateful I am he followed his gut and we are getting a correct diagnosis. 

So this is what we know: Jonathan has a cancer of the bone called osteosarcoma.  Osteosarcoma is a type of cancer that produces immature bone and is most often found in men under the age of 25.  The doctor said his cancer is stage 2B.  I've done some research now online about Osteosarcoma and there is a chart that explains what the stage means.

Earlier this week the Cleveland Clinic contacted our Doctor for more of the CT scans.  When our oncologist checked in with us he told us this.  I think we both knew they were checking again to make sure it wasn't metastasizing.  And we did get confirmation it isn't! 

Apparently this type of cancer is very aggressive, therefore we need to be as well.  In our brief conversation with the surgical oncologist he explained what to expect for treatment.  Jonathan will be admitted into the hospital for about 4-5 days every 3 to 4 weeks for a very high dose chemotherapy.  This type of cancer spreads very easily and so they need to do whole body chemo instead of localized chemo.  This will happen for about 4 months, and then he will have a surgery to remove the tumor and quite a bit of area around it.  Because it spreads so easily they have to take a good portion of healthy tissue and bone just to ensure they are not leaving anything.  So the surgeon said that they will probably have to remove at least half of his femur and most likely will also need to do an entire knee replacement.  After the surgery, Jonathan will start the chemotherapy again.  I'm assuming this is to kill anything that would have possibly broken off during surgery.  I'm not sure if this will be as long as the first treatment or not. 

We have an appointment on Monday to actually meet with the surgical oncologist and he is working on referrals to other oncologist and help us get set up with a plan.  Jonathan is already pulling some strings with friends that are in the medical field for possible other doctors (potentially not local) that would offer us the best care.  We want the best doctors!  So the research begins with that... However it sounds like we can't wait long on finding a doctor and he needs to get going with chemo asap.  So please pray that wherever we end up for treatment, it will be with the best people.

What can you do?  First, I know I sound like a broken record, but we really do find comfort knowing that people are praying for Jonathan and our family.  So please continue to do that.  Second, I have a friend setting up a website for helping us out with food.  When we get Jonathan's Chemo schedule etc. we will get that out to those of you who want to bring us dinner.  I have a lot of questions for the doctors about the kids.  I know that chemo really does a number on your immune system, and I'm not sure if there will be times even if Jon is home that he can't be around children.  Let alone if we need to go out of town for treatments.  So we may also be needing help in that area.  Please also pray for us to be given wisdom on how in the world we are going to explain cancer to a 2 and 4 year old who wait for daddy to get home to play tackle football. 

We know we are going to have a very long year ahead of us.  But we also know God is bigger than Cancer and he knows the plans he has for us.  Jonathan's mom gives each of her children and grandchildren a scripture verse when they are born.  Jonathan's verse is Jeremiah 29:11 "For I know the plans that I have for you" declares the lord, "plans to prosper you, and not to harm you, plans to give you hope and a future."  So we will continue to have hope, and have comfort that the plans are not of harm.  With God's help, Jonathan's got this!

                                              (Jax and mommy at tennis camp this week)

The Update is No Update

Hey everyone!  We are once again getting lots of texts and calls asking if we have heard anything.  So I thought I better write a quick update.

As you all know over a week ago, we heard from the local pathology lab.  We got great news that the initial results are that the tumor is benign.  If this is true, we can only credit this to a divine miracle.  The doctor still is not convinced so he wanted to send the biopsy off for a second opinion.  He flat said "the scan is indicative of cancer, and what I saw during the biopsy, looks like cancer."  But then we get this benign pathology.  So the doctor is confused... and frankly so are we.  We have celebrated the fact that there is still a chance it is benign.  We didn't think that was really an option.  So if it does come back that way, Awesome!   We just don't want to get our hopes up before we know for sure. 

We were told last Monday that it would be a few days before we would hear from the Cleveland Clinic.  So we were hoping to hear by Friday at the latest, but that wasn't the case... Today the doctor called us to tell us he called the Cleveland Clinic to check and they are still working on it.  So No second opinion yet. 

How is Jonathan Doing?
Well last Friday was his first day that he made it through an entire day of work without having to put his leg up with ice.  He is still mildly swollen and limping around.  But now he thinks the pain is more the tumor, than the biopsy surgery.  He is trying to get back to as much normalcy as he can.  So really overall, considering he has a tumor in his leg he is really doing pretty good. 

We spent the weekend at Priest Lake and had an amazing weekend.  The boys had an absolute blast, and Jonathan was really suffering because he couldn't jump in.  (I guess swimming with stitches is frowned upon)  Both boys did great in the boat, and now Jonathan wants his boat back!  Figures... We had fun at the camp fire, and playing with friends. 

So the update is: we continue to wait.  Which is honestly very hard!  I find myself even texting Jonathan to ask if he has heard anything... as if he would not call me right away.  Trying to continue life as normal with this huge thing always on your mind pretty much stinks.  And we are doers, planners, problem solvers, and this No plan, No Idea of what the next weeks, months, or even possibly the year holds is starting to wear on both of us.  But Hopefully we will have a plan by the end of this week!

I got this verse from a friend this last week and found it fitting and helpful.
"I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart! I have overcome the world."  John 16:33  (Thanks T) 
So we are going to continue to count our blessings and try to not worry... TRY (key word)!

I promise I will let you all know when we know!

HUGE answer to prayer!

Well for a 4th of July weekend, ours was pretty uneventful!  Jonathan and I spent most of the time at home.  He was in quite a bit of pain for a few days.  But by Saturday was up and moving around a little bit.  So we were able to get to Moses Lake to see our new nephew Matty and my older sister after her big surgery.  The boys spent most of the week with Grammy and Granpy so they had a blast 4-wheeling, doing construction projects... you know, all the things granpy's do.  In fact, when we pulled in the driveway at my parents Jude yelled "Hi dad and mom... don't get us!"  They didn't want to come home.  But it was actually really nice for Jonathan to have a quiet house to get some rest.  So apparently a win for everyone!

This morning, Monday morning, Jonathan got up and I drove him to work.  He made it about half the day before his leg wasn't feeling too good.  BUT we did hear from the Dr... So I thought I would give you the amazing news!

The pathology report is saying NO CANCER!  The tumor is benign.  To be honest with you, this is a miracle and I can only say thank you to all of you for praying for us.  God is amazing and does answer prayer!  The Dr. however didn't say it was a miracle, he actually doesn't even believe the results of the tests.  From all of the scans, and what he saw on Wednesday still believes it is cancer.  So he is sending the biopsy to the Cleveland Clinic who specializes in this sort of stuff just to get another opinion and make sure.  We will have those results in a couple more days.  But for now we are doing a little happy dance!  Thank you Jesus!

Even if the tumor isn't cancer, Jonathan is still going to require surgery.  We aren't sure on many details yet, but the Dr. said he probably can just scrape out the tumor, and do some bone graphing.  So there is still a pretty big surgery ahead, but I think this eliminates doing Chemo and possibly radiation I think.

To be honest with you we are still in shock that the biopsy came back benign.  And are faithful that the next pathology lab will find the same results.  Because I do know this:  Matthew 7:7 "Ask, and it will be given to you.  Seek, and you will find.  Knock, and the door will be opened to you."  We asked, and asked and asked... So I think it was given!  AMEN 

I want to thank everyone for praying for us.  I truly do think it has made a HUGE difference here in our life.  I will let you all know what the secondary tests say, and when we know Jonathan's plan for surgery.

THANK YOU!  THANK YOU!  THANK YOU!  I want to stand one the roof and scream this!

Biopsy Results

I first want to continue to thank all of you out there praying for Jonathan and our family.  We both feel like the power of all of these prayers are making a difference.  Day by day we are seeing answers to prayer and continue to praise God for the blessings we are receiving through out this tough journey.  But we really do have a lot to be thankful for. 

We are beyond grateful for Jonathan's work situation.  For many men, the stress of missing so much work and providing for their family is just icing on the cake.  We could not ask for a kinder boss/friend Scott Rudy and his family.  They do so much for our family and we really love you guys. 

We are so blessed to have such a great support system!  We have neighbors, friends, family, church family, people from work... I could keep going.  So many people have offered to help and have shown so much kindness to us.  It gives us a lot more confidence in what lies ahead. 

I could write pages and pages on how many things we are grateful for, but for now, I'll get down to it!

Today we checked into Sacred Heart at about 5:30 a.m.  At about 7 this morning Jonathan was all prepped and we were able to meet with his oncologist before he began surgery.  He explained a lot about how the lab tests will work on the biopsy when he is done.  However all I remember is him saying it will take up to 1 week!  1 MORE WEEK!  He did say he would have some information for us when he was done though.

It actually didn't take long for the Dr. to meet with me in the waiting room.  The procedure was really very quick.  He said that Jonathan's bone actually looked really pretty healthy and was still pretty strong.  He said he did have some trouble getting through it.  So that is a great sign that his bone wasn't super soft.  He did however say that when he got to the tumor, it does look like cancer.  But it doesn't seem to be spreading at this point, and he thinks it will be in early stages.  He said nothing is for sure until we get the lab tests back though.  He told me that he thinks this is going to be treatable.  So I'm clinging to that word, treatable. 

I asked if we knew anything about what to expect for treatment.  He said we will not have a plan until we get the tests back, but chemo and radiation are likely, along with more surgery.  But then he said there is also a chance that we can just do some radiation only and the tumor will just dissolve and then that would mean no surgery.  We just don't really know yet.

I was able to see Jonathan shortly after he woke up.  He was in quite a bit of pain.  Which I would think is expected since they cut through his thigh muscle and put a hole in his femur. 

The boys were able to come in the post op area to see daddy.  They were very sweet, and gentle with daddy, and were looking forward to seeing him since he wasn't home when they woke up. 

When we got home Jonathan was able to put a small amount of weight on his leg, but was still in quite a bit of pain.  The boys were of coarse being extra helpful and so Grammy and Granpy made sure to get the boys out of the house and to the park, the gondolas, and the white elephant so daddy could get some rest. 

So for now I think Jonathan is on the mend from his biopsy and we are going to continue to count our blessings day by day.  We have been working on gathering information on beating cancer with nutrition and trying to get as informed as possible about how we fight this.  For now Jonathan and I are cutting sugar back out of our diet... I read in my research that "Trying to beat cancer while eating a diet that constantly raises blood glucose is like trying to put out a forest fire while someone nearby is throwing gasoline on the trees."  We are looking at this as another blessing... I recently did a 2 month sugar free diet, so am somewhat prepared for how to eat totally sugar free.  So this isn't as scary as it could be. 

Many of you are asking to bring food for us etc.  I have a friend working on setting up a website where you can get info on when and what to bring.  But we may not post the website until we hear more on what our next few weeks hold.  So please stay tuned on that, and I will let you know more information as soon as we hear.

Jonathan chose a scripture today that I want to include.  “No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” 1 Corinthians 2:9 

Please continue to pray for what we will hear next week.