Dare I Say It?

(This is Andy) So a quick recap from where we left off last week....things were as bad as they could be, everything was bleek and dreary and then....

Crys (Jon's mom) called me right away last Monday morning. Jon's labwork was back and there was news to share. Jon's immune system had decided to surprise us with an appearance. His counts were at 13. Neither Crys nor I were sure what to say let alone what to think about it. We both decided to wait and see what Tuesday would bring. 

Tuesday arrived with a slight increase in counts from 13 to 14. Again we were unsure what to think. And so things continued through the week. Slight increases day by day. Jon's counts are now at 156. 

Jon's immune system is coming back but there are still other things that we deal with every day on this roller coaster we are living on. Jon has no appetite whatsoever. He's been on nutrients for over a week. Jon has severe nausea which seems to be motion activated. 

The hardest thing that we are dealing with right now ( or at least it's the hardest for me to deal with) is that Jon has times where he isnt lucid. He's asked questions that he should know the answer to. Or he tells me things that don't make sense. I'll spare you all the details. There's a number of things it can be blamed on: meds, chemo-brain, poor nutrition, stuck in the same room for 8 weeks. As long as I can blame it on something else because that is not my Jon.

So we are taking each day one day at a time, but dare I say it...

There appears to be a glimmer of hope.

Please continue to pray for my Jon. Give him the strength, hope and love he needs to make it through each day. 

I found the following quote posted on the Facebook page of one of Jon's friends. This struck me enough that I had to write it down and have read it over and over again this week....

So we don't look at the troubles we have right now; rather we look forward to what we have not seen. For the troubles we have will soon be over, but the joys to come will last forever. 2 Corinthians 4:18

Thank you all for riding this roller coaster with us.

Oh Crap...

(This is Andy) So whenever Jon writes somehow he always manages to post something quirky, kinda funny, no matter how 'not funny' the rest of his post may be. I can't even begin to attempt that tonight and let me apologize in advance because not only do I have alot to tell, but I also need to catch you up on what's been going on.

You see I've been trying to figure out what to say for a few days. I honestly really don't want to talk about what I'm about to tell you, but I'm a planner so I figure it's best to attempt to prepare everyone for the path that lies ahead.... but let me start at the beginning of last week.

On Monday, Jon had a bone marrow biopsy. The purpose of this biopsy was really not to check if the leukemia was still there, but to send the bone marrow sample with the leukemia in it to a special lab on the East Coast. That lab would be able to try different types of chemo on Jon's leukemia cells in the sample of bone marrow to see what types of chemo the leukemia responded well to.

So Tuesday morning, Jon called me well before 9 a.m. Now this in itself was a surprise as Jon had been struggling with being able to focus in order to make phone calls and send text messages... my initial thought... Oh crap....

But Jon was ECSTATIC on the other end of the phone and though he struggled to tell me the right words for the good news he had, one thing was clear. He had good news. There was NO leukemia in his bone marrow. So not only was the leukemia gone, but there was no need to send the sample to the East Coast lab.

As excited as I was about Jon's wonderful news, I had to wait until after work, after I picked up the kids, and then since my mother-in-law was in town, I was able to eave the kids at home while I went to see Jon at the hospital. Imagine my surprise as I'm walking into his hospital wing to see a chest xray machine and 2 technicians standing next to it right outside Jon's room. Then as I walk into his room I see 2 gowned up nurses taking blood cultures... and my thought again was Oh crap... You see Jon had spiked a fever that afternoon of 102.4 and that immediately calls for blood cultures (so we can figure out what it is) and lots of crazy antibiotics so they can try to get ahead of the infection.

We got ahead of the infection, but it was a rough few days. Turns out it was in Jon's PICC line and come to find out it was the kocula bacteria. What that is, is 1 of a family of bacteria that seem to cause infections in people who haven't had an immune system in a long time, which Jon hasn't.

Now I just mentioned Jon hasn't had an immune system since October. Seriously, since October. We've been hitting Jon with different types of chemo for the past 2 and a half years trying to fight this terrible disease and up until October each time Jon's immune system would come strong within just 3-4 weeks. Now since October a few things have changed. Not only has Jon's body been struggling to get rid of the leukemia, his body has been unable to build back his immune system. Now our families and I have all been wondering why aren't his counts coming back (his counts are his immune system) and I've been hesitant to ask because I wasn't sure if I wanted to know the answer.

Fast forward to Friday.. after a routine dental appointment, I stopped in to see Jon that morning. I was pulled out of his room for a quick heart-to-heart conversation. The topic of discussion: Jon's immune system or lack of one. Basically if Jon's immune system doesn't reboot on its own in the next few weeks then it isn't going to...ever. And you can't live without an immune system, you are susceptible to any and every kind of infection possible. Point taken. I soon left the hospital and stopped to buy paint (because my original plan for the afternoon was to stay home and paint), and then the conversation I had just had settled in.

After a well-timed text message from my sister-in-law, (I had called her back and spilled my news) we ended up at my house talking while painting Nevaeh's new room. And then, dum-dum-dum, my cell phone rings and the voice on the other end says: Dr. Darabi wants to meet with you this afternoon at 3....

Oh Crap...

So I will spare you all the details of that fateful conversation, but the fact remains: Jon doesn't have an immune system. It's not coming back on its own. And realistically, the leukemia is gone for the moment, but not forever. We got lucky this week. The infection Jon got was really, really bad, he's okay now. But how long can he survive without an immune system, and how long should he have to.

I've had lots of heart-to-heart conversations this week, with Jon's parents, his sister, my parents, but the absolute worst was the one I had with Alivia and Nevaeh. It's a conversation no one should have to have with their kids, and we've had way too many of them.

You all need to remember we've been fighting this fight for a long time. Jon's been fighting so hard, for so long - at what point is it too much to ask of him. Chemo is not something that is good for you, it is so hard on your body and the past 7 weeks have been extremely hard on him.

Please don't ask me how I'm doing, how would you be doing if it were you. I know you all want to help and I truly appreciate it, but please don't ask me what you can do to help, because the response in my head every time is "fix my husband" and I don't know anyone who can do that.

So now I am off to bed, in the house that Jon may never get to come home to, that is filled with the four most precious gifts he ever gave me...our babies.

AML - Can I get a break here

Let's catch up.    I've been in Sanford since Dec 11 for more chemo. They let me out  the week before Christmas so I could be with my family.   The closer we got to Christmas the worse I was feeling.

I could only walk about 25 feet before my heart rate went through the roof. I was unable to eat.  I was very nauseous. As the days passed it got worse.   Long story short, I checked myself back into Sanford hospital.

Things quickly turned around for the better and I started feeling better.  It got to the point where I could sneak out for a few hours on Christmas Eve. I couldn't manage an escape on Christmas through.  They kept me a bit busy with tests. 

So my last posts indicated that we would do a bone marrow biopsy to confirm remission and then send me off to May Clinic for a consult.

We got some disappointing new this week turns out the chemo we tried didn't quite get the job done.  I still have Leukemia in my bone marrow.  Essentially we've tried a couple of "experimental" treatments, but I have not been able to get back to remission

So we started yet another kind of chemo immediately . Fun.

It's administered by shot in my belly, 3 shots at a time, for 7 days.  They are not that bad.

So here we are... I am struggling to get back into remission. It doesn't appear the transplant or the last two rounds of chemo. helped at all.  Unable to go home from Sanford because my counts are too low.  Not sure what options are left.      

There should be a silver lining somewhere, but I can't locate it,



                      

AML: Painkillers

I am starting to get some of my focus back.  If it holds I'll be writing more then I have been.

I've been struggling with appetite issues (I have no desire to eat), my gigantic cold sore is healing nicely now, but there were some very uncomfortable nights.  I have also been battling frequent headaches. 

As a result of the pain\discomfort, I've been going through a variety of pain med options.  Oxy-IR (Oxycodone) doesn't seem to work anymore.  Norco (Oxy & Tylenol) never seemed to work.  As it is now, a pain killer called dilaudid is the only thing that has been working.  Problem is it is rather short lived (45 min).  I can only take the dilaudid every 4 hours.  And I have been taking it pretty regularly. 

I am told I am not taking a high enough dose or getting it frequent enough to develop an addition to it. I do have a much better understanding of how someone could become addicted to prescription pain killers.  From my viewpoint, an escape, no matter how little, is very welcome.  After spending so much time being poked, prodded, tested, confined, and so on, it seems perfectly justified to want to take the edge off.  I can't order up a drink after all.  Instead, the initial rush when getting IV-dilaudid has become something I look forward to and it does help with the headaches.  

I started asking questions about my other pain relief options since a few of my current ones are no longer effective. The pain group here offered a Fentanyl pain patch, but that just seemed over kill.  I am surprised at how quick they were willing to go that way, I declined.  It's out of my comfort zone.  We'll focus on the oral meds for the time being. 

For the moment the headaches are minor and I am feeling ok otherwise.  I just need some improvement in appetite.  Let's hope 2013 treats the Grann clan a little better then 2012. 

AML: Christmas 2012

I haven't been writing much because I've lacked the focus to do so.  I am on lots of meds and my mind is a bit groggy most of the time.   It looks like I have a few more weeks in here until I recover. 

I am very happy to say that I got out for a few hours on Christmas Eve to have supper and open presents with the kids.  It was a good night.  They didn't let me out on Christmas however so it has been kind of a mess of a holiday. 

Treatment-wise things are progressing as they should.  My counts are bottomed out and there is no cancer in my blood.  I had some scans to determine why I was running fevers and not feeling well.  They felt there was some infection in my lungs at some point but the meds I am on should take care of it.   I am getting platelets an red blood when I need them. 

We decided not to do neupogen shots again.  The thinking is I don't want to jump start any leukemia before my immune system is back in shape to fight it. 

Really we're just in our routine of taking meds and waiting for things to get better.

AML: Back in the hospital again.

So I was released from the hospital last Wednesday with he hope that I was going to be home for Christmas.  Unfortunately after about a day the nausea set in.  Long story short, I was pretty miserable.  I dehydrated quickly and could barely get around.  Night time was especially bad as I'd spend most of it throwing up. 

We tried outpatient on Saturday to get me some fluids and nausea meds. I could tell right away that it didn't help so I had myself readmitted to the hospital.  I am already feeling much better. 

I have been running low grade fevers, so they put me on broad antibiotics.  They are running blood cultures to see if there is anything there.  I am getting platelets now. 

The good news is I'll have a pass for Christmas eve.  As long as I am doing ok, I'll be able to go home for a few hours on Christmas eve and maybe Christmas day to celebrate with the family. 
Merry Christmas everyone.

AML: Home again

Very short message this time.  Nothing witty or overly awesome to say.  I am headed home tonight.  Visitors still welcome. 

Relieved and happy to be headed home.  Crossing fingers for a "healthy" Christmas.