Things can change so fast!

I know I just posted a blog, but I’m getting lots of texts and questions about what is going on as word is spreading that things are not going well.  So I thought I would fill you all in.  This is the easiest way for me so my phone isn’t blowing up and I’m not spending hours on the phone.

So as I mentioned in my last blog, Jonathan is loosing feeling in his left leg all the way down to his foot.  At first it was when he was sitting in different positions, now it is progressing to where his foot is hurting or getting the pins and needles feeling all the time.  Shocker, I started researching!  So on Monday night as we were lying in bed watching TV, I decided to take his femoral pulse.  (That’s the most action Jon gets anymore…)  It was super easy to find it on the right groin.  The left groin where the tumor is, I could feel nothing but tumor.  So I started to get concerned that he was losing blood flow to his limb and that artery may be getting blocked by the tumor.  I called the doctor first thing Tuesday morning to get him scheduled for a scan before he went in for surgery to get the pain pump in.  I was unsuccessful!  They ended up getting the scan done after his surgery first thing on Wednesday morning. 

I went right down to the imaging place and got the CD of images.  Later that day we met with a doctor friend at the house to look at the images together.  Jonathan has an additional 6 or 7 spots on his lungs that are small, but new.  His hip, where he is getting most of the pain, has changed significantly.  His tumor has now wrapped around the hip bone and goes from the outside of his left hip all the way to past the center of his pelvis.  It is starting to work up to the lower back and is now half way down his left femur.  The tumor has begun pushing on his large intestine as well as shifting his bladder.  As you can imagine this is causing problems.  I called Dr Howlett to get his opinion of the scan.  Fortunately I was wrong and the tumor is not yet crushing his artery.  If that was the case we would have to choose to amputate his leg, or let him die from a blood clot or gang green.  So for now that isn’t happening.  It is however crushing his sciatic nerve.  So he felt at this time it is still safe to not surgically do anything.

I thought I would show a few images of the CT of the tumor in his hip.  I made some notes on the images to explain.  As you can see they didn’t even get the entire tumor in the scan…

Here are questions we are getting:

Can you cut out a portion of the tumor that is causing problems?  It is not recommended.  It is called seeding the tumor.  Once you cut into the tumor the cancer cells are disrupted and spread everywhere.  Often times the incision won’t heal and becomes cancerous.  This obviously causes a ton of its own problems.  Not to mention the metastatic disease can explode and your time is shortened.

Chemo? Jonathan doesn’t want to do chemo!  And it will disqualify us from the trial in Houston.

Radiation?  We are looking into palliative radiation options.  We are also trying to figure out if it will disqualify us from the Houston trial as well.  BUT radiation will hopefully provide temporary pain relief although it is not a curative method for Jonathan’s type of cancer.  So we are meeting with a radiology Oncologist tomorrow to prepare to begin treatment.  It is a process to get radiation with body casting, placement etc.  So we will start the process in hopes that coming home from Houston we will have most of the hoops jumped already. 

The Pain Pump?  Well we went into the doctor early this morning as Jonathan did not sleep more than 2 hours last night.  Lying down is so painful for him.  So about every 20 minutes he was getting out of bed just to hold onto the wall and stand.  Now imagine you just had surgery on your abdomen and you can’t lay down.  Yeah… that is what we are dealing with here.  So Dr. Jamison increased his morphine pump by 70%.  She said it is making the hair on her neck stand up but she could see the amount of pain he was in. 

Houston?  We spoke with Dr. Wang yesterday.  They will be ready for Jonathan on March 14^th.  He has to have a 2 week wash out of his immunotherapy drugs.  So we are getting those today, and then will be mailing Jonathan’s scans to Texas.  Once they determine it is still safe for Jonathan to do the trial, we will book our flight.  Jonathan, I and the boys will fly down.  My dad will be taking the truck 4 days before we leave and he will drive down and meet us.  I’m working on finding housing close to the hospital. 

Jonathan and I feel it is important for us to do everything we can to get to Houston.  He feel it is our only shot at actually saving his life at this point.  We do also know that they have lost patients while on this trial.  So as he is getting worse for wear, we assume our risk is rising every day.  So this is our long shot…

I was talking to Jonathan’s sister last night as we were talking about where we are at.  She decided to establish some rules for us.  I’m having a hard time telling people no and laying some ground rules.  I just know everyone loves Jonathan and wants to see him, however as I wrote in my last blog, I watch him fake it.  He also doesn’t tell people no or let them see how he is really doing.  So as we prepare to leave in 2 weeks and know full well I may only be bringing 2 little boys home with me.  We would love to see you, but I really appreciate Kristine protecting us by establishing a plan for how this need to go.  Here is what Kristine would like me to have everyone know. 

-We are no longer going to be able to go out.  Jonathan is just not well enough for that.
-No more overnight house guests… not even family.  This will allow us to put our kids to bed and have time alone.  Jonathan also won’t feel like he needs to wake up and have coffee/breakfast with guests.
-Visitors need to limit their stays to an hour and a half. 
-Everyone needs to leave by 7pm. 

To add insult to injury as we were leaving the doctor today the nurse was taking more labs because his original labs showed an enzyme called alkaline phosphatase.  This is an enzyme that can indicate a few possible things, but as I read about each scenario I think that it is indicating bone metastasis.  It ultimately is something that happens in late stage cancer patients and of course is extremely painful.  If you have the desire, google Bone Metastasis Bisphosphonates.  You’ll have a wonderfully terrifying read.  We are hoping to have more lab results back on this tomorrow.

I don’t know what else to say except we need prayers.  I want to say thank you to our friends that have showed up to help the kids have a fun day as we try to protect them from our tears.  Thank you to those of you who are going to pick up the pieces of Cancer Can’t so our hard work and desire to make a difference will not be in vein.  Pray for us that we may have the insight on how you explain this to a 4 and 5 year old.  Pray for Jonathan and I as we begin to talk about scenarios, his wishes and that I will have the courage to do what he needs me to do.