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.”