Our Worst Fear

Tonight after getting Jonathan all of his medication, I watched him close his eyes, and pray “God, please get me to morning.”  It has been another very hard week and a half since I last updated my blog.  And I just don’t understand why something can’t just go smoothly for him?  Or not be complicated?  But the truth is Cancer Sucks!  And I want to warn you, the following is going to be hard to read… But probably only half as hard as it was to write.

On Monday last week, Jonathan checked back into the hospital to start chemo.  The nurses were so sweet and decorated his room in a Hawaiian summer theme.  The hospital ordered him a frig and a microwave for his room.  So we were living in style at the hospital!  Before checking in I insisted we do another baseline scan of Jonathan’s tumor and chest so we knew the tumors exact starting size.  The doctor here in Spokane didn’t feel it was totally necessary because he just was scanned 3 weeks prior, but the doctors in Seattle said they would recommend it.  So I was persistent!  We did the scan that Monday in the hospital.

Jonathan started chemo and I was there with him all day.  He seemed to do fine and there was no hallucinations, which was a fear I had.  We did notice the chemo regimen seemed a bit different than what the doctor in Seattle recommended, so I called Seattle and our doctor here and checked that out.  Turns out we were right and we needed to adjust the chemo.  Seems like now that there isn’t a “standard” of treatment, I need to be on my toes even more.  Not sure if a mistake was made or if all the doctors just needed to agree on the course of action on how to give the chemo.  But we got that all squared away and it only meant one more day in the hospital…  (I’m preaching it again people, you are your best advocate!)  Anyway, Jonathan’s mom delivered his home cooked meal made by our friends and I headed home to hang out with the boys for the evening. 

The boys were loaded into the bike trailer, I was helping dad get his bike down off the rack when my phone rang.  It was Jonathan.  He asked me if I had a second… duh!  Apparently Dr. Raj came in for his evening rounds with the result of the CT from earlier that day.  “He said I now have several spots on my lungs.”  Wait what?  He was just scanned like 3 weeks ago… no spots then.  Now there isn’t just one spot, but several.  Our worst fear has now arrived!  Yep that fast!

I waited to head back to the hospital so his mom could have some time with Jonathan alone.  Then I went back at around 10pm so we could be together.  We laid in his hospital bed and cried for a while.  This is just happening so fast.  I feel like just as I begin to cope with the last hit, I am getting hit with something again.  I can’t breathe, I can’t prepare anything in my head for what is in front of us. 

I came back early the next morning so we could talk to the Dr. together.  He explained that there are 3 spots on his right lung and 2 on his left lung.  This is too many to do surgery on.  This now eliminates the possibility of doing surgery on his pelvis, and I think I told you the stats on what the odds are without removing the tumors.  I think everyone keeps beating around the bush, but we both know the truth is that unless we come across a miracle, we are looking at his death sentence.  So I just asked the question… How Long?  I think his answer was, something like this… If this chemo is effective at slowing this down, 2 years.  So Jonathan and I are guessing that if it isn’t effective, we are looking at probably a fraction of that. 

I worked on paperwork for medical trials at the hospital during the week, as Jonathan was on a 24 hr drip of chemo for 6 days.  By Friday he was beginning to feel pretty crappy.  And I was able to take him home on Sunday.  This chemo wasn’t nearly as bad as the Cisplatin he had to do last time, but it still is working him over.  He said he feels like the ground is moving or tilting back and forth.  So maybe he is hallucinating?  But it is causing nausea, but not so bad that he isn’t eating anything or drinking.  He has been able to eat a little bit and is doing good with fluids.  He says the worst part is his pain!  His tumor only feels ok when he is up moving around, or maybe just not sitting or laying on it.  When he is in the hospital and feels like the ground is moving, laying or sitting is his only option.  So he says it feels like the tumor is pushing so hard into his hip joint that he feels like his leg is about to dislocate.  So we are trying to get his pain under control. 

Yesterday he began to feel a bit better.  He came down stairs and had breakfast with the boys, was playing with them on the couch a little and was coming back to being himself.  I told a new friend of ours that is also battling Osteosarcoma that I would bring him lunch at the hospital that day.  Jonathan said he really wanted to try to go with me.  So he used all his energy to come with me to visit Ryan.  This guy is incredible and has been battling this crap for a while now.  He is defying the odds left and right, and faithfully comes back to the hospital for chemo every 3-4 weeks.  I cannot even begin to tell you how strong both these men are.

So now that Jonathan is starting to feel better in terms of nausea, he of course is getting mouth soars!  And just like last time, he is beginning to feel soars developing throughout his GI tract.  So we know he has no immune system right now.  And to top it off… we have a new side effect, 2 actually! 

        

     1.  Last night at about 3 am Jonathan wakes me up.  He is shivering so hard that is was on the verge of being more like a seizure.  I got up, took his temp, Normal.  He said he wasn’t cold and actually felt warm but could not control his body.  I got him some Ativan to calm him and got in bed and held him tight as if I was going to hold the shaking down.  We did that about a half hour.  (I think he had been shaking like that for about 15 minutes before he woke me up)  I finally decided to set a timer… 5 more minutes and I’m calling the Dr.  I think at 4 minutes he began to stop and then fell asleep.  I called the dr. first thing this morning.  Turns out he could have an infection in his blood stream OR it is chemo induced shivers as the toxins in the tumors are releasing.  So if it persists we need to go to the ER.

      2.   Jonathan is having a very high pulse rate.  This chemo should not be effecting his heart, this one effects his bladder.  So it doesn’t make sense why his pulse is no lower than 110, ever!  At times it is even hitting 150 just from walking to the bathroom.  He is breathless, and has chest tightness.  This has been happening for about a week now.  So I asked the Dr. about that… He asked me to take his blood pressure.  Jon was sitting in bed.  85/123 pulse 117.  So pressure normal, pulse high.  Apparently there is a good chance he may have a pulmonary embolism.  He is ordering a chest work up and we are to check in to the imaging place tomorrow.  If they find a blood clot or see something we will be checking into the ER.

Yesterday I ran an errand and Jude wanted to come with me.  So as I’m driving to the bank, Jude says “Mommy, I don’t like that daddy has cancer.”  I told him I hate it that daddy has cancer.  He then said “Mommy, Jesus has more magic than those bad guys!”  It's funny how a 3 year old can remind you where to find hope.

So, as I sign off here, I’m going to whisper that same prayer.  “Please let him make it to the morning, we would love some of that magic about now!”

Thank you to all the families that brought food while Jon was in the hospital this week.  It was awesome and a huge blessing to him to have home cooked food.

Also, if you are planning to get tickets to the dinner and auction for the Cancer Can't Foundation, you need to do that this week!  www.cancercant.info