More bad news...

I haven’t sat down to write in the last week because I’ve been having such a hard time coming to grips with what is happening to our family.  I’ve really been struggling with this and just when you think it can’t get worse.  It does! 

So we had a plan, and I was beginning to wrap my mind around the plan.  I think we were prepared for what to expect for at least the next few months… And then we went to our follow up appointment with the surgeon.  He asked if we had spoken with Chappie, the surgeon in Seattle.  We hadn’t, and he explained that he had been, extensively actually.  So he began to explain to us, that the biopsy of the bone came back positive for cancer cells.  He told us the biopsy that he took was higher up into the hip socket than what we thought.  He said it didn’t look like cancer up that high, but he did the biopsy that high so they knew the required margins for the next surgery.  So now that this biopsy was positive, that changed the surgery from what we originally discussed.  Now a hip replacement was no longer an option.  They would have to remove so much of his pelvis that there would be no hip socket left to hold his leg.  This surgery is going to require that they amputate Jonathan's leg and remove most of his left pelvis.

Both boys were in the room with us during this appointment.  Jude had his mind set that he was going to help remove Jonathan’s staples, so we brought them along thinking there wouldn’t be any big surprises.  We were wrong, and it forced me to hold it together… at least for a few minutes.

So the Doctor continued… This is a very major surgery.  You would be in the ICU for days.  And I don’t want to sound harsh, but I need to be frank.  Your chances with this chemo aren’t good.  I want you to know I don’t recommend you even do this surgery.  There was a silence in the room that was far louder than the sound of Jax playing angry birds on Jonathan’s phone.  I then asked “So is it true that there is a 100% fatality if you do not remove the complete tumor?”  He quietly says, Yes.  Jonathan asked “Is there any chance that chemo and radiation could shrink the tumor enough that it would change the surgery?”  He says, there is a small chance, but not to get our hopes up for that to be the case. 

We finished our conversation with the doctor, and then the nurse came in to remove the staples.  Jude jumped to his feet and asked her if he could help.  He and Jax had no idea what was just discussed and that I was trying with every fiber in my being to keep from crying.  Jonathan looked at me with so much strength in his eyes and whispers “It’s just a leg babe.”  I began to help Jude put on some surgical gloves because he somehow talked the nurse and his daddy into letting him remove the staples from Jonathan’s butt.  The next thing I knew we were loading the kids into the car and I found myself crouched by the side of the truck reminding myself to breathe.  It was our 11 year anniversary that day, and I just listened to a doctor tell us to choose quality of life.  We got married so young that I knew for sure we would make it to our 50 year anniversary like both my grandparents did... only 11 years and we are already facing this.  

By the time we got home, I had to run upstairs because I could no longer hold myself together in front of the boys.  I think Jonathan started a movie for them then met me upstairs where we once again cried together.  He somehow talked me into continuing with our anniversary plans for the night.  So we headed out to Northern Qwest Casino to check into a hotel room. 

I think I cried off and on for a few days.  Jonathan seemed to be doing far better than I was.  As we began to talk through this together, Jonathan is really focusing on living in the moment.  He says he is looking at each day as a gift and he isn’t looking beyond today.  So I’m going to decide to try my best to follow his example.   

We are starting chemo on Monday and are continuing with our plan.  We are praying that the chemo is effective and does shrink his tumor, even though we know that is unlikely.  We may try some radiation as well to see if that will help at all to shrink the tumor.  I think what we will do after a few rounds of chemo is to remove his soft tissue tumor.  We will have them test the tumor for the effectiveness of the chemo.  If the chemo is working effectively we may at that point choose to remove the bone portion of the tumor in his pelvis along with his leg if that is required.  If the chemo isn’t showing really good results, we will leave the bone portion of the tumor and head down to Houston (assuming we even get into the trial).  

My dad officially retired last week and is going to become our grandpa nanny.  That means we have full time help with the kids.  He will move with us wherever we need to go.  This has been a huge blessing for Jonathan and I to know that we have help with the kids, and that they can come with us wherever we need to go.  No matter what happens or where we end up, we can do this together, as a family.

Today I  finally feel like I’m starting to feel a bit better.  Jonathan and I went to see a counselor yesterday.  I think it was good for both of us.  I’m so grateful for the skills we had gained over the last year that is helping us communicate through this now.  I'm so incredibly grateful for Jonathan's strength and peace right now.  Somehow he is being the rock and I'm so glad he is leading our family.  We had an elder (or more appropriate, I should say friend) from our church come and pray with us.  I told her how I was struggling between the fact that I KNOW God can change this in a second.  He can heal Jonathan!  But I also know that might not happen for Jonathan and 95% is hard not to face.  And I’m finding myself praying that whatever God’s will is, that I trust his plan is for good, even if I can’t see it and don't understand it.  But MY will is for him to be cured, and if I had my way, I would change all of this!  I feel like I'm praying out of each side of my mouth.  I want to be obedient, but I also want my way.  She was a great reminder that we are to go boldly to Christ.  And he is bigger than this.  So I’m not going to be afraid to ask for healing, even in the face of what these odd are.  We are not going to allow our fears, this cancer, this satin, to cripple us!  We are not going to quit or give up.

I want to thank our support system.  You are truly making a difference in our situation.  I think our dinner sign up sheet was full within an hour and a half of being posted on FB!  Pastor Joe briefly chatted about this verse a couple weeks ago.  2 Corinthians 7:5-6” … but we were harassed at every turn – Conflicts on the outside.  Fear on the inside.  But God, who comforts the downcast, comforted us by the coming of Titus.”  We are being comforted by our friends and family.  And I want you all to know we see Christ through your support.  Thank you for reaching out to us.  And thank you for praying for our family.

Specific Prayer Requests:

1.  Help us find the Joy in each day and just live in each Moment.  This is incredibly difficult, but we know we can win this battle by how we live.  And this is how we want to live.

2.  Extremely effective chemo with little or less side effects!   

3.  Acceptance into the medical trial at Houston.

4.  Strength

On another note, Jonathan is planning his chemo schedule around our Cancer Can't dinner and Auction coming up on September 12th.  If you can make it to Spokane and want to support us in helping others who are going through this exact same nightmare, we would love that.  It does feel really good to help others, and it would feel really good to make this event a huge success.  

Speaker:  Sean Swarner (check out his story here)

Register: Click here

Playing to Win

I think Jonathan and I have come to a decision.  This has been the hardest decision put before us, and we have cried over it, prayed about it, researched it extensively, and questioned all advice.  We still don’t know if we are making the right decision, but we are both 100% confident this is the right decision for us.  We have decided to pursue the medical trial, and while that is in the works, we will begin the chemo option.  We may fail, but in our minds we will be going down swinging!  The other day I was watching the boys fight as brothers do and this just reminds me of our little Jude.  His brother knocked him down hard, he got to his feet, he closed his eyes, put his head down and started throwing hay makers with all his might.  The kid is a scrapper, and he gets it from his daddy!

When we went to Seattle to consult with the team of doctors at the Sarcoma Clinic, they had a plan for us.  Their option was to try a new chemo, then monitor the tumor response.  Based on scan results then we cut it out and do more chemo.  This has the next best odds to what we tried last time.  Their team was wavering on what type of radiation we would add to this approach and when in the game we would do it.  They got us all the information we needed to know about the next best plan and asked if we had questions.  So of course we had already researched our options and knew statistics.  So I asked… “You say this is the next best option, but what are the odds this is going to work, because from our research, this is a pretty sucky option.”  So at this point she finally truthfully told us the stats.  Our next best chance is 5% - 10%.  Then and I quote “Basically we are going to try to keep you alive as long as we can so science can catch up and maybe we find a cure.”  So once again because of our extensive research, Jonathan asked “well what about a medical trial?”  She basically explained to us that at this point it is an option for us, but they wouldn’t recommend it.  There are no statistics and typically they only use that option when the tumor burden becomes so high that chemo therapy is not working.  A clinical trial is your last ditch effort.  So we pushed some more.  We talked about the research we had done on the specific trials using T-Cell Therapy.  We told her we had watched a documentary where they have basically found a cure for leukemia with HIV and T-Cells.  We asked her what she thought of 2 specific trials exploring this science.  She said they have promise.  However they are in early stages and we should wait until they have more information on dosing etc.  BUT we should start down this road.  She said we could begin testing for markers that the trial would need.  Get the information so that later on, we were more ready to go when his tumor burden become to excessive to just cut out. 

We walked away from that appointment feeling no better than we went in.  Their plan was everything we read about the typical course of treatment.  I find it very interesting that until prompted she wasn’t going to tell us how bad the odds were of that plan.  Until prompted she wasn’t even going to give us the option of a medical trial yet.  Doctors are trained based on pure statistical data.  If something can’t offer any data, it is a worse option than 5%.  Even if it means living your entire existence on chemotherapy while chopping your body apart piece by piece. 

So then we had our appointment with our local doctor.  Our second opinion if you will.  He is less trained in the sarcoma world but he has become more than just our doctor.  We were looking forward to our appointment with Dr. Raj because we knew our conversation could be far more personal.  So as we start the conversation he asks what Seattle recommend we do.  We told him… and he said well I have another idea we can consider.  Since your odds are that the tumors are just going to keep coming back, maybe we skip the chemo initially and just cut out the tumors as we can.  We have the medical capability to cut mets out of your lungs, which the tumors will eventually start landing there.  Then when the tumor burden becomes too high to keep just cutting them out, then we can start chemotherapy.  This will allow you a better quality of life for a longer period.  You won’t be constantly immune suppressed, you can feel well enough to participate in family life, you are just dealing with surgery, not both surgery and chemo at the same time.  Then once the chemo does what it can do, we move to the clinical trials.  And somewhere along that road you hope for the miracle that the next tumor doesn’t happen. 

Although this option sounds awful, I totally was following his train of thought.  He was taking into consideration our family, and Jonathan’s quality of life left based on the statistics.  Then we asked if he read all the clinical trials we sent him.  He said he had read them, and he called multiple colleagues around the country who deal more specifically with sarcoma.  We asked him what they thought of the T-Cell science or concept for treating this.  He explained how it worked and why it is a great idea.  He said this is basically being used as the answer for leukemia, and has so much promise but there is still so much to figure out.  So I asked him “So if our odds are 5% or we don’t know, 5% doesn’t seem that much better than 0%, so to me they are the same thing.  Why are people waiting so long to try the trial?”  His answer, “I don’t know!”   So he began to talk it out.  You know you make a valid point… are these trial statistics even skewed because the only patients they get are on their death bed.  The amount of work that these T-Cells would have to do to be successful is a ton when the tumor burden is so high.  That also makes the side effects of the TCell therapy way worse based on how it is working.  So Jonathan asked him that question that probably every doctor gets… “If this was your son, what would you do?”  But this time when Jonathan asked this question, this doctor actually really thought about it.  He sat there for a second I think sincerely taking it to heart, and then he said “I would get into a T-Cell trial, whichever one can get you in faster.”  (because there is only 2)  He gave us a list of things we needed to do, questions we needed to ask.  He said he would be our advocate and get the trial facilitators his cell number.  And worse case, we can always come back to these other 2 horrible options!  Chemo and surgery will always be here…

So now we need to get accepted!!  Jonathan and I have been working diligently to get into these trials.  There are 1 million questions and 2 million hurdles.  Turns out after making some phone calls, the trial out of Duke is currently closed.  We did find out though that when and if it reopens and if Jon can get in, we don’t have to move to North Carolina.  Our local doc is working on the paperwork for a compassionate use of this trial but who knows how long or if it will work.  But we are also 11 on the waiting list when it reopens.  Next option… Texas!  Jonathan called and spoke with the main doctor.  Dr. Wang told Jonathan she didn’t think this was a good idea.  It was phase 1 and there are obvious risks… So Jonathan and I talked and I of course jumped online to promptly email her myself.  (I’ve never liked being told no)  She called me right back.  We had a long conversation, and the next thing we knew, we were getting his biopsy tested to make sure he qualifies.  I got her to call Dr. Raj here in Spokane, who also plead our case why Jonathan would be their best lab rat yet and we are well aware that the risks aren’t that much greater now, rather than later!  So they came up with a plan!  It takes 2 weeks to test Jonathan’s tumor for the HER2 marker.  If he doesn’t test positive, this door shuts in our face!  If he is testing positive, he can be accepted into the trial.  After going through those hoops, it takes at least 8 weeks to grow the TCell therapy infusion.  So while we are going through these hoops we are going to begin chemo and go down this road of option 1 recommended by Seattle doctors.  If he tests positive we will be pursuing the medical trial simultaneously.  Dr. Wang is consulting with her group to see if they will allow us to freeze his TCell growth until his next tumor comes.  (Once we remove the tumor in his hip, it disqualifies him from the trial)  So they are assuming the risk that there is a 5% - 10% chance that Jon is cured and these Tcells will be wasted.  BUT if a tumor does come back, we won’t have to wait 12 weeks to start the TCell therapy.  It will be ready for him, even if the tumor is resectable just like this one.  Then we will head down to Texas and begin the trial!  (Before he is infested with tumors, hoping that less tumor burden will help)  So that’s the plan!  We will be starting chemo here in Spokane soon…

As I lay in bed and my mind races, once again it crossed my mind.  What if we hadn’t done our own research?  Truthfully, we probably would not have even been told clinical trials were even an option for us yet.  Jonathan qualifies because he is stage 4, but by the standard of how these doctors are trained, this isn’t a good option yet, so we aren’t going to present it!  We have not yet exhausted all our options that at least offer some statistics. (even if it is only 1%)    We would not even be given the right to make this choice for ourselves!  Beyond that, there are like 15 sarcoma trials.  Most are other types of chemo, or different agents tried with chemo.  We aren’t just doing any trial, we have researched the ones we believe to show the most hope.  So I can’t tell you that this is going to work.  I can’t tell you if this is going to save Jonathan’s life… but for all of you people out there that don’t advocate for yourself or a loved one.  I’m here to tell you first hand, you need to do your due diligence.  You need to research and know your options!  Because now we have some tiny glimmer of hope.  Just maybe Jonathan won’t have to suffer through years of chemotherapy.  Just maybe he won’t be cut apart piece by piece.  We are going to go against the crowd.  We are going to throw the Hail Mary on the first down (well second down I guess) for the win, instead of wait for the 4^th down when the defense expects it!  We are going down swinging and maybe just maybe we find a miracle now, and not after he has suffered for years already. 

 

I’m going to assume that most of you don’t really understand or are not well informed about what T-Cell Therapy is… why would most people know about it?  If you don’t have cancer it isn’t something you would be researching.  Here is a link to a documentary briefing that was done specific to t-cell therapy advances that Jonathan and I found last year.  This concept has for all intensive purposes become the cure to leukemia.  https://m.youtube.com/watch?v=k-z22u2003k (If you have the time, find the full HBO version documentary, this is extremely informative)   Here is also a link to a blog of a patient going through the trial at Baylor with the Chicken Pox Virus and T-Cell Therapy.  He does a great job of explaining, and if you watched the HBO thing, our opinion is, for him, it working!  http://vogelzoo.blogspot.com/search?updated-min=2015-01-01T00:00:00-08:00&updated-max=2016-01-01T00:00:00-08:00&max-results=35  We do know as of right now, TCells are not working well on solid tumors.  So this is still a huge uphill battle, but it is some form of hope none the less. 

So we are now beginning to pick ourselves up off the ground, brush ourselves off and getting ready to battle.  No more pity party, or crying all the time!   I feel a little bit like Jude... lets just close our eyes, put our heads down and start swinging.   We can just pray we land a hard hit before we get hit! 

If I could throw out a prayer request?  Please pray that Jonathan tests positive for that HER2 marker.  If he doesn't then we can't get into that trial in Texas and that would feel like another devastating blow. 

Once we know our hospital schedule, I will ask Nikki to start a food sign up again for dinners for Jonathan in the hospital.  That was probably the number 1 blessing to us last time we went through this!  I know so many of you have offered to bring food, so that will be the most help.  Thank you all for your prayers and support. 

Lets Play a Game!

Some of you may remember the game “would you rather?”   I think most of us probably played the game when we were in high school and it was typically pretty immature and looked something like this:  Would you rather slide down a razor blade into a pool of rubbing alcohol, OR French kiss the ugliest boy in your history class that is sporting a face full of warts?  And of course your friends made you pick one…

Well I would like to personally welcome you to the world’s worst real life game of Would You Rather!  Before I give you your selection choices, let me explain a bit more about the prognosis.  Oh and don’t forget, this isn’t a dream and you do actually have to pick one!  (well at least we do…)

 

Diagnosis: Metastatic Osteosarcoma (also known as stage 4).  After completing short of 1 year of chemo therapy and 1 major surgery.  Jonathan has a second tumor that has been found in both the pelvis bone and the soft tissue surrounding that bone.  It appears to be 1 tumor about 3 cm in size located at the bottom of his pelvis on that bone where you sit.  Over the last 3 months I had so many people ask if Jonathan was in remission, or I would hear people say he was in remission.  Eventually I just stopped correcting the misnomer.  With this type of cancer, they can never tell you if you are cancer free.  They only know if you have tumors or not.  Because Jonathan has developed a second tumor, they can assume the cancer is all through his entire body… There is just no way to detect that for sure.  But we can confirm the chemotherapy didn’t work since there is a subsequent tumor.  Therefore he is declared stage 4.  Statistics say now that he has roughly a 5% - 10% chance to live for up to 5 more years.  Those 5 years will be spent on random chemotherapy the majority of the time, as tumor after tumor develop until we can no longer cut them out.  I’m not trying to sound grim, but want to be honest about the severity of what we are facing. 

Last Wednesday Jonathan did a PET scan to confirm that there is only 1 tumor at this time and it is in his left pelvis.  (The opposite side as the other tumor which was in his right femur)  On Thursday the surgeon in Spokane did a biopsy of the tumor to confirm our suspicion.  During surgery he looked at the soft tissue tumor under the microscope to confirm that it was the osteosarcoma.  So with the prelim results we know enough… Now this biopsy surgery isn’t your typical minimally invasive poke a needle in type of surgery.  Jonathan has about a 12” incision down his entire butt cheek and down his hip.  He was given a couple days to recover before we had to get in the car and travel to Seattle to see our team of doctors at the Seattle Cancer Care Alliance. 

Alright, now you are informed… Ready to play?

Option 1: This is the recommended course of action by both the surgical oncologist and the medical oncologist.  Jonathan would be put on a completely new type of chemotherapy.  Each treatment cycle would be 3 weeks consisting of a 5 day stay in the hospital followed by a 2 week stay at home.  He would experience nausea, mouth sores, severe hallucinations, neutropenia, anemia, hair loss… no need to continue, I think you get the idea.  He would do 2 to 4 cycles of treatment.  Depending on the success would determine when he would have surgery.  Surgery would include soft tissue tumor removal along with a portion of his pelvis.  Depending on the spread of the tumor, possibly a hip replacement as well.  During surgery they may do surgical radiation.  After surgery he would do possibly proton therapy radiation, as well as neutron therapy radiation.  Then 4 more cycles of chemotherapy.  This option has a 5% to 10% success rate of no return of the cancer. 

Option 2: Clinical trial.  There is a phase 1 clinical trial at Baylor University in Texas, and a phase 2 clinical trial at Duke in North Carolina.  First Jonathan would need to qualify and be accepted into the trial.  The concept behind the trials are T-Cell therapy combined with a Virus.  They do not share the success statistics, and do not know as much about the side effects.  You are essentially a lab rat!  We do know that T-Cell therapy combined with the HIV virus has essentially become the cure for leukemia.  This concept is very promising, but is very experimental at this point.  They would leave the tumor in to monitor the success of the treatment.  (We do know that there is a 0% success in treating osteosarcoma if you do not remove the tumors)  So I would assume at some point you would still have the surgery and then continue the T-Cell treatment after.  The same concept as the chemotherapy.  If your tumor is growing and you are not responding to treatment, they will kick you out of the study and you would return home at which point you would go back on chemotherapy, or find another trial.  There are no statistics available for this option.  We are going to have our local oncologist, Dr. Raj, look into these options way more extensively this week.

Risks – If you choose option #2, there is a potential that the tumor would become too big to do just a hip replacement.  If the treatment did not work and the tumor grew quickly, It may result in an amputation of his leg and pelvis.  If you choose option #1, the tumors could continue to grow and would potentially reach a point where you would not qualify for the trials.

Benefits – If you choose option #1, it might just work, well 5% - 10%.  The chemotherapy can be done at home here in Spokane.  If it doesn’t work, we can try a trial if it isn’t too far progressed, and maybe the trial will be more advanced to a point of a phase 3 and would have more information on success rates.  If you choose option #2, it might just work!  You wouldn’t have to suffer through chemotherapy.  The tumor would shrink so much that the surgery would be less invasive.  If it doesn’t work, there is always chemotherapy…

So there you have it!  What would you rather? 

I’ve had so many people tell me they can’t imagine what we are going through… and I would never want anyone I know to experience this.  There are so many emotions or thoughts that you go through.  I remember when I wrote the last blog, I read a post one of my cousin’s wrote when he shared the blog.  He called Jon a warrior.  I instantly started crying when I saw it because I’m not ready to go back to war.  In fact I would rather he go to real war… his odds are probably better dodging real bullets.  I can’t seem to pick myself up off the ground and gather myself enough to do this all over again.  I question if I’m being negative because I’m trying to cope with the reality of the 90% chance instead of being determined that will never happen.  I feel so alone… no one knows what to say to us, or what this really feels like.  Well except Jonathan’s mom in which case we sit on the phone crying screaming the F word at the top of our lungs. 

This week our goal is to reach out to our therapist at cancer care NW.  I also would assume there is grief counseling at our church, we are going to look into that.  I think Jax is at a point where he should begin doing counseling.  We know we can’t do this on our own.  Even though we feel so alone, we will need our family and friends more than ever.  We need to stay active to fight off depression with exercise and a healthy diet.  We are going to pick ourselves up of the floor and fight this... I just think the more you get hit, the harder it gets to get back up!

We also keep getting the question, “how is your faith?”  I don’t think either of us is angry about this.  I know for a few days, I didn’t pray… I had too many questions for God and I was so confused I didn’t know what to say.  I think mostly I’m struggling with the fact that his plan isn’t my plan!  I know God knows exactly how I feel… His son unrightfully suffered too.  I’m sure he felt the same pain we are feeling now.  His heart is breaking too…  But You know what else, his son unrightfully died!  Why couldn’t there have been a better plan?  The plan was a perfect sacrifice… And it saved everyone!  I don’t know what the plan is for Jonathan, but I know the reality isn’t always candy and rainbows!  I cried uncontrollably while watching the passion of the Christ, and I still had no idea what this really feels like.  I guess I feel like Abraham leading Isaak up the mountain.  I’m happy because God’s plan worked out for Abraham and Isaak.  So I do know he can change this in a second, I 100% trust that!  I’m just confused why we are even being asked to head up the mountain AGAIN… But after the last year, I know how much good came from such a horrible experience.  So I know God has a plan again.  I just wish his plan was the same as mine!

Round 2

Last time I wrote a blog I was letting everyone know Jonathan’s scan was clear.  We were off to celebrate and make up for time lost by traveling with the kids.  We went to the Oregon coast, then off to Hawaii.  We’ve taken the kids golfing and are at the pool playing and enjoying every moment of summer together as a family.  We have truly had a wonderful 3 months!  But sadly, 3 months is all we will be getting…

On our drive home from the Oregon coast, Jonathan started to get pretty uncomfortable sitting in the car.  His hips were hurting and it slowly has gotten worse.  In fact, he can’t even ride in my car now, sitting in that particular position is excruciating to him.  So when we went in for his 3 month scan in June, we were pretty nervous.  I think we would be less nervous if he wasn’t having pain anywhere.  We got the news that his scans were clear.  That tiny spot that once showed up on his very first PET scan a year ago was back again, but such a small absorption rate that it is nothing.  (Just like the first time we explored it)  But since he was having pain and it isn’t cancer, we need to figure out what is going on.  So the Dr. ordered an MRI of his pelvis/hip looking for meniscus issues or maybe a stress fracture from walking on that one leg only for the last year. 

So about a month later… this last Thursday, Jonathan went in for his MRI.  Upon leaving the MRI, he asked for his disk of images so we could look at them at home.  The computer kept freezing so the receptionist asked if he could come back on Friday.  So he did… Then he took the kids to swimming lessons.  Jax got stung by a bee of course that day.  So instead of playing golf after swimming, they went right home so Jax could relax and watch a movie.  I decided to go out for a pedicure with a friend and get some work done for the non-profit while the boys were supposed to be golfing.  So once Jonathan got the boys settled on the couch watching their movie, he plugged the disc into the computer to see if he could see anything… Unfortunately, what he saw is horrifying.

It looks like a giant white spot on the left groin area of his pelvis… the same looking white spot that was on his leg.  He immediately called the oncology office to ask if they have looked at the scans.  The Dr. pulled them up and confirmed what he was looking at wasn’t good.  He said he will need to have a surgery to biopsy it to confirm what we think it is, and get another PET scan. 

Jonathan then calmly called me and told me Jax got stung and I should probably just come home.  So I did… As I walked into the house, the boys are quietly watching a movie and I turn to see Jonathan sitting on our chair in the office.  He has tears rolling down his face and I can see his feet tapping anxiously.  He looked at me and I knew!  I dropped everything I had in my hands to the floor and started screaming there was a spot wasn’t there?  At first I was angry… How could they have missed this just a month ago it was clear!?  Then I wanted to see the scans myself… to my horror it was just as big as the last one!  Well the only problem is, it doesn’t matter at all how big it is, anything, any tiny spot means the chemo didn’t work.  The only way they know how to treat Osteosarcoma, DIDN’T WORK! 

By this time I had fallen to the floor sobbing, we both were… I can’t tell you how long I sat there crying probably harder, no like way harder, then I cried 1 year ago.  At one point I don’t think I was breathing and then my face and arms started going numb.  That was all I could get out to Jonathan as he tries to decide if he should be taking me to the hospital for a change.  As his concern moved to my wellbeing, I think some sort of brain function returned and I started telling myself out loud “Breathe, you have to Breathe.”

Once I was coherent, the questions started coming.  Word for word what did the Dr say?  OK so we need a biopsy, give me the phone, I’m called Chappie NOW!  Somehow Dr. Chappie answered his phone, and I told him what was happening.  He told me his surgeries are on Thursday and he will try to fit him in.  Call at 8am Monday morning and we will get it figured out!  Then he asked if there was anything on his lungs… and in my frustration I said 1 month ago there wasn’t anything on his pelvis, so I have no flipping clue if this is to his lungs yet.  It grew to the size of a golf ball in a month!  He says, well if it isn’t in his lungs yet, that’s some sort of good news… Call me first thing Monday.  And we hung up. 

Next Surgeon, there is the local one here in Spokane, Dr. Howlett.  Chappie trained him and well he caught this entire mess in the first place.  Lets call him… So we got an appointment on Tuesday.  Not sure it makes much of a difference who does the biopsy, and if a day or 2 matter in the time frame.  Ultimately we know what it is… but they will want the biopsy to begin genetic testing on. 

I began to call family, as Jonathan sat on the computer researching.  I didn’t have to research… I knew the odds were now very much not in our favor.  I knew the 2 oncologist both answered my question totally different when I asked “do you have a plan if this comes back?”  And the answer is, they don’t know what to do, and are each guessing.  There is no standard of treatment anymore.  One proposed a different types of chemo that shows maybe some promise.  (AKA buy more time, time that we know is sick and miserable.  AND pray for a miracle.)  The other suggested medical trials.  No statistical proof of anything, a long shot!   Now, we have no good options!

Jonathan found a T Cell trial at Duke and Penn State.  So we will see what the doctors tell us, and if we need to pick up and move to North Carolina.  But here is what Jonathan told me.  He isn’t quitting!  He has way too much to live for, and hey, his odds are better than Sean’s.  (The speaker we have coming to the dinner and auction)  So his positive spirit is in there… it is just really hard to be positive YET!  I know we will formulate a plan and we will go at this all over again, but it is hard to be positive when you are so devastated at the same time.

So we put on a happy face, let Jax have his friend come spend the night, then packed a swim suite, tooth brush and pajamas and hit the road for Priest Lake first thing the next morning.  We promised the kids daddy would take them to the lake, they love it here (so do we), and how in the world were we going to tell them?  So tonight we sat down around the table for dinner and Jonathan told them that daddy thinks the bad guys are back.  Jax got mad sort of and was immediately frustrated.  I told him I was really sad and it was ok for him to be sad.  So he then started crying, but just for a minute before he reminded us that the bad guys don’t like it if we are happy.  So we need to try to be happy!  Jude kind of seemed confused, and just sat there quite.  He then started asking questions, Does this mean we have to go to the hospital all the time AGAIN?  Is daddy going to be sick AGAIN?  Jax asked if we are moving to Florida… So we did tell them we very likely will have to move.  So they are working on processing this and are trying to be brave.  As brave as any 3 & 5 year old could be!

We spent the weekend hiding from world and making the most of the time we all have together.  Jax caught a fish off the dock, the boys got Jonathan on the tube for a nice little ride and we tried to enjoy our most favorite place the best we could.  We even mustered up the courage to travel across the lake to have a drink with some friends.  We both know from last time it is better to crawl out of your hole and face people.  Allow yourself to be encouraged, but it just takes every ounce you have to try to be normal for a minute.  But once we can do that, it does feel better…

 

So as we prepare to head out the door for church, I’m once again going to ask for prayer.  We are virtually living a nightmare right now.  Maybe by some miracle this spot isn’t what we think it is.  But I will update the blog again when we know more later this week. 

Life After Chemo

 

I know it has been awhile since Becky or I have updated everyone on how we are doing.  The truth is we have barely been home to provide an update.  I may have over compensated for being stuck in a hospital room for the last 9 months!  A few weekend trips, Portland, Oregon Coast, Ephrata and the most fun was Hawaii!  But we actually did not sleep a weekend at home from March 27 until May 8^th!  I've really been enjoying my time out feeling almost normal.  Here are some Pictures:

We are on the Oregon Coast

The Boys go to the Seal Caves... It doesn't smell good!

4 Wheeling on the Beach in Oregon.  (Thank you Uncle Frank and Aunt Linda)

First Day in Hawaii

I was able to paddle board... but it wasn't pretty

Family mini golf ocean side

The boys Loved the wild life

Jude made a goal to take a weird photo with Every statue in the resort

Grammy and Granpy took the boys to see the volcano.  Jude loved to have the top down! 

(very grateful they came to help with the kids!)

Went on a submarine.  Becky got sick, but we saw a shark in a wrecked ship... Just like on Nemo!

The waves were too much for my leg... So this was the alternative!

Priceless 

The boys LOVED swimming with the dolphins, but if you ask them about it, they will tell you they got the dolphin to fart!

 

So here is the good, the bad and the ugly of where we are today!

The good.

I feel great!  My energy is coming back more and more each day.  I was able to kick almost all the medications right away that I was taking the last 9 months.  My leg is getting stronger and seems to be recovering much faster without having the chemo being pumped into me.

Becky gets me to the gym almost daily, and I for some reason keep letting her drag me to classes.  Spin class a few times now and I just did TRX class today…  That’ll hurt tomorrow!  But we are enjoying our time together and I know this is helping my leg get stronger, and hopefully correcting my pulse and blood pressure.

I am playing golf again and able to play 18 holes already!  It isn’t easy but dragging my leg through the finish always feels good.  My game is nowhere close to where is used to be.  I have been asked several times if it’s frustrating to play so much worse or different than before.  My answer is simple and honest, “I’m above ground and playing golf, so no it’s not frustrating.”  Neither of those was a guarantee 10 months ago and isn’t a guarantee forever. 

I am loving being home with Becky and the boys.  Getting to take Jax to school, doing puzzles, Legos or taking Jax to the golf course.  Hanging out with Jude for our morning coffee is amazing.  I felt like I missed out on a lot of this and am so happy to be able to make up for lost time before going back to work. 

The bad. 

My new right leg is an inch shorted than it is supposed to be…  Seems like there would be a more precise way to go about these surgeries but I am told this is normal.  The device did move 1 CM higher post-surgery too.  The difference in length makes it hard to walk without a limp.  Trying to fix this with orthotics and heel lifts without having to rock giant shoes…  The difference plus the week right leg is also now playing havoc on my hips and lower back on the strong side.  It is really painful to sit for more than an hour or so, and sometimes just a few minutes can cause a lot of discomfort.  I’ve been attempting massage and now chiropractic care to see if the pain will dissipate as things get straightened out. 

Continued neuropathy in my hands and feet.  They have a tingling or numb feel almost all the time.  The pain and extreme temperature feelings has gotten much better.  Regular acupuncture has helped (I think), plus time away from chemo.

I am still going to a lot of doctor and therapy appointments to try and help with all the random side effects and recovery.  Detox from chemo can take months and some side effects can last years…  But I would still much rather have some side effects than have any more chemo days!

The ugly.

We know the very real and scary risk of reoccurrence.  Depending on the person you ask or study you read the chance of return is between 30-50%.  And it’s really bad if it does return.  We know the only way doctors know how to treat my cancer didn’t work.  So we become those medical trial people that… well you get the idea.  This scary truth is what we will live with for the rest of our lives especially the first 5 years.  I have another scan coming up end of June.  Prayers that this is another clear scan are appreciated.  We know God has a plan and we pray that the plan was for me to beat cancer the first try.  If not we will continue to fight!

The other part of this reoccurrence risk is that every time a muscle aches or a joint hurts or anything else that is completely normal happens, you think the cancer may be back.  This is a ridiculous feeling to have but is one I have…  and have a lot because my body is going through so much repair and adjustments that my joints and muscles always hurt!  We are trying to learn how to live not in fear, but the truth is, we aren’t doing great at it.  Becky has been having nightmares and wakes up in panic mode that I’m dead and I’m calling to ask doctors to scan me again because I have a sore glut! 

I’m starting to get people asking me on a regular basis when I’m coming back to work.  This is a hard question for me… Going back to work right now would mean it is part time.  I’m seeing some form of a rehab doctor every day.  Because I’m a commission employee, this would be difficult to pull off, and probably not fair to Scott.  (Although I know he doesn’t care and wants me back ASAP)  But my other reality is that 50%...  These first few months of scans are crucial and often reoccurrence happens in the first year.  I’ve missed the last year with my family and now that I feel like I have no idea what is in my future, I’m spending my time in the most important place as long as I can. 

In other news:

Our fundraising efforts (and by our, I mean Becky’s) are going great.  I am busy goofing off and playing with the boys but Becky has been amazing.  We both feel very passionately about the non-profit and the good work we will be able to do from it.  We have raised (Or have commitments for) over $50,000 of our $100,000 goal for this year and still have the event on Sept 12 to raise more money. 

We are already scheming about next year and finding needs that can be filled around every corner.  Honestly helping others has been the best distraction for both Becky and myself.  It feels good to feel like you can help someone else experiencing the same hell we did. 

September is going to be here before you know it.  We are starting to try to figure out numbers etc.  So if you plan on playing in the golf tournament or coming to the dinner and auction, Please go register and get that taken care of.  We are very confident the dinner tickets are going to sell out (we have a max occupancy) so you don’t want to wait on those!  We are really excited how everything is coming together and are excited for everyone to come.

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We Did It! Last Chemo Day

I had a neighbor pull over this weekend as I was doing yard work to tell me she was looking at the blog almost daily waiting to hear the scan results!  I guess after I posted it to Facebook I totally forgot I needed to fill in all our blog followers.  It made me so happy to see her face light up when I told her our great news... HIS SCAN WAS CLEAR!  So tonight I sit down and write, as Jonathan is at the hospital, probably taking his very last drop of chemo as we speak.

I almost can't even describe our feelings over the last couple of weeks.  This last year has been one hell of a wild ride for our entire family.  When Jonathan told me Dr. Raj called and his scan was clear, I actually jumped on the bed and started dancing!  Jonathan laughed at me, but I think if he could jump he would have joined me.  But after that initial excitement, we realized we still had 2 more rounds to finish and that pure joy hasn't quite yet returned.  I'm hoping as we wrap up the chemo, and the side effects start to dissipate, our joy will continue to grow.  We have been much happier these last couple weeks, but I guess it's hard to be "over the moon" when Jonathan is still having to deal with all the side effects of chemo.  Maybe that's why we aren't feeling like one would expect?  But don't worry, the therapist said we are both still normal. 

(Our family photo as daddy was getting his last round of chemo!)

 

So today was Jonathan's last day of chemotherapy!  It turned out to be kind of an interesting day... Similar to the very first day we checked in for chemo, there was no bed for him.  This time we know the nurses and decided to check ourselves into the family room on the 7th floor instead of wait on the 9th floor.  So we hung out with strangers and they started Jonathan on his IV in the waiting room.  We met another very nice young family who's daddy/husband has multiple myeloma.  This very young girl had her first experience calling 911 the night before as her daddy was bleeding profusely from his hickman, just like Jonathan has.  His chemo isn't working!  I think these girls were maybe 7 and 9 with a mom not much older than Jon and I.  She told us we made her day that she got to meet someone that beat it, and we got to share with her what today feels like.  So as I'm suppose to sit here and write about how awesome today is, I can't stop crying for this family.  This is what we see every day in that hospital, and being that family is still my worse fear.  Maybe that's why we can't actually feel so "over the moon" excited.  This is so very real to us.  And if it isn't us, we have a very real understanding that it is happening to someone else. 

But we also got to learn what a true gift we have been given, and we plan on making the most of every second we have together as a family, before Jonathan goes back to work.  If the Doc gives us the green light we may take a road trip over the boy's spring break just the 4 of us.  Then shortly after that we are going to head to Hawaii for a week to fulfill a promise to the kids on that vacation to the ocean.  It's about 1 summer late, and we are beyond ready to escape from life for a few days and just relax with no worries or stress about doctors, chemo, chores, etc.  I'm certain when we get there, that pure joy feeling will be back!  It really means that this is over.

I'm going to leave you with Jax's prayer from tonight.  "Jesus, thank you that tomorrow daddy gets the tubes out of his chest.  He is really excited about that.  And Jesus, thank you for listening to my prayers and helping dr. Raj take away daddy's Cancer.  You have magic!  Please help me have no bad dreams tonight.  Amen!"

(Thank you to the nurses from the bottom of our hearts for everything you have done to help Jonathan over the last 9 months.  You are an incredible crew that has allowed Jonathan to keep his sense of humor and helped him make the best of something not so awesome!  You are a gift from God!  Trust me, I understand why you have started taking his blood pressure around his neck!)

Requesting Prayer, Very Big Day Ahead

I'm sitting down on the eve of my 30th birthday to update you all on a very big couple of days that lay ahead of us.  I think at this point in most people’s lives they take some time to reflect on their last 30 years.  I think some people get a little depressed because maybe they aren’t where they expected to be by 30.  Their career didn’t pan out the way they wanted, maybe they aren’t married with kids.  Or maybe just the opposite.  Maybe everything came together for you just how you planned.  So you begin to plan your next 30 years.  I have no idea what turning 30 feels like, I haven’t honestly even thought about it…

Tomorrow, on my 30^th birthday, Jonathan will be getting a PET scan.  A day I’ve been dreading for months now.  By Friday we will know our fate.  Are we back to square 1 and we start this all over again, or can Jonathan begin to recover and life can maybe be something that resembles life before cancer.  Unlike life one year ago, we now can only plan life in 3 month increments.  We plan life until his next PET scan. 

I feel confident that everything will come back clean and we can finish his last 2 rounds in March and then begin to recover from the last year.  But no matter how confident anyone can be even just the tiniest possibility that you could get bad news is crippling.  The fear is crippling.  We’ve been telling the kids for the last couple weeks now that daddy just has a couple more hospital trips and he we be all better.  He will start to feel better.  What if I’m a liar?  Tonight I know Jax knew the magnitude of his prayer as he prayed for daddy’s scan.  Lately daddy getting better has seemed as redundant as “and thank you for all our blessings, Amen.”  But tonight I watched him wipe a tear from his eye as he asked God for a good scan, No more Cancer, No more chemo, and for daddy to take him to play golf again. 

Our Dr. even expressed his own anxiety over Jonathan’s scans.  I can’t even imagine doing his job to tell you the truth.  The possibility of giving people bad news like that… He began to explain how some patients are harder than others.  Some you begin to get attached to.  He told us Jonathan’s scan have to come back clear for his own sanity.

Over the last few days my mind has begun to wonder, did I pray enough?  Have I been listening and doing what I’m supposed to be doing?  Have I learned what the point of all of this was?  Jonathan’s mom and I joked around about this recently, I would have listened to a burning bush!  As if anything I can do will change the outcome.  I know it won’t, but the thought is human nature I’m sure. 

 

So tonight my blog is going to be rather short.  But I appeal to you to please keep our family in your prayers for the next few days.  We really need Jonathan’s scan to come back clean.  We are both trying to so hard to be positive, and to handle this with every ounce of grace God sends our way.  But the truth is we are very ready for this nightmare to end for us.  I would much rather focus my extra energy helping others through their nightmare!  Thank you for taking a moment to pray for us.