Final Journey

Quick and very blunt update - The leukemia has returned and is very aggressive. Jon's back at Sanford. He has fought courageously for nearly three years. Although we haven't been given any specific timelines, we have been told that soon his fight will be over. The Drs. are keeping his intense pain manageable, but the medicine makes him very sleepy. Thoughts and prayers for Andy, the kids and our parents during this difficult time. Not only is today Father's Day but it is also Jon's birthday. Thanks, Jess (Jon's sister)

AML: Quick Update

This will be short.  Just an update as to how I a fairing at home. 

I continue to do labs each Mon, Wed and Fri.   It's just a quick trip and they call me back in if I need a transfusion.  Last week I received platelets on Monday and Friday.  I felt pretty dehydrated those days so I also requested hydration and so they pushed a liter of fluid at the same time. 

Thursday & Friday my tank was pretty much empty.  I had little energy and was getting frustrated at how poor I felt.  Saturday I felt marginally better.  Sunday was Mickey's (my niece) birthday.  I woke up feeling pretty good and had a pretty good day.  I pretty much perched myself on the couch and stayed there, but we made a full day of it. 

Today I feel much better.  My labs confirmed what I was thinking.  My counts are beginning to recover.  My white count moved up to .8,  red blood up to 9.8, platelets 38 and ANC at 408.   All good stuff considering where I was last week. 

I was most worried about my white count recovering since it has been an issue with my latest rounds of chemo.  It's still early, but to get where we're at is a very good thing. 

I'm still settled in at home.  Not much stamina but able to get around for the most part. 

It's a good day. 

AML: The Big Elephant in the Room

Now that I'm closer to home we're looking at the next phase of my treatment.  

As it is right now I'm a week from my last round of chemo.  So my counts are still falling and I need platelets and red blood infusions from time to time.  Just like any other round of chemo I'll have another week or so at the "bottom" and then we'll see just what kind of shape things are in.  Hopefully my beat-up bone marrow is able to produce healthy platelets and red blood cells.  We'll also see if the lymphocyte infusion I had on Monday provides a boost to my immune system recovery. 

Beyond that, I have pretty much exhausted my treatment options.  Through all my chemo treatments and the stem cell transplant we've kept knocking the leukemia down but it has never been quite enough. Unfortunately the byproduct of continually killing the weaker cancer cells is that we have created a very acute and drug/treatment resistant leukemia. The drugs that used to work well, just don't any more. 

From here things get kind of heavy and depressing.  To be honest I've struggled to figure out just how much I want to keep sharing about this experience.  It's a lot more enjoyable and in my nature to share messages with a bright side or something I can poke a little fun at.  I'm just not sure there will
be much of a bright side to what is coming.  I've come to the conclusion that I just as well finish the story regardless of whether the bad days outnumber the good days. 

Since my treatment options are limited we now start making decisions about palliative care.  In other words we start talking about improving my quality of life rather then curing my leukemia.  We're having conversations about pain management, blood product replacement and so on.  The good news is that I've got a doctor who understands that for me, the most important thing is limiting the amount of time I spend in the hospital separated from my family. 

So the big question is how much time.  The problem is that no one can answer that one for me.  Optimistically we would all like to have this turn into one of those situations we all hear about where the doctors say that I had 3 months and that was two years ago.  Realistically, when you look at the nature of what I am dealing with that seems quite unlikely.  I guess with the rest of the awesomeness I have to deal with, I make some pretty wicked awesome leukemia cells. 

As long as my body is able to recover enough to produce platelets and red blood cells I have to think things will be easier to manage.  We'll be in a mode where we try to prevent or treat infections and replace blood products as needed.  At least that seems fairly familiar and certainly doable as an outpatient.  At some point however not treating the leukemia means that the cancer cells will overtake the healthy ones.  So the question remains...how much time.   

With no way to answer that we take things from here day-by-day and are making preparations accordingly.  Andy and I are happy to be home. The kids are happy to have me (almost) home. I am going to enjoy every moment I am given.  Even though I am back, I'm still recovering and it is frustrating knowing that time may be limited but I am also held back a bit because of my last chemo treatment. 

We still want visitors. Friends and family are so important to us. I guess by sharing this post we don't have to dance around the big elephant in the room. We don't want people to distance themselves because I am home and they think we want more family time.  We'll find the right balance and I guess I'd rather have people continue to rally around me now that I am home to enjoy it. 

I am so thankful for the unwavering support we've received from friends and family.  It has been a long road.  With treatment over, this particular journey is nearing an end.  I have accepted it. I'm okay with it.  Prayers are still needed.  I'd love to have my sense of taste straightened out if anyone is taking requests. (That's right, of all things, I just want food to taste like food again).  I'll continue to keep writing and sharing memories.  It's a good way to cope with things. 

The fight continues...Miracles happen...

AML - Back to Sanford.

Monday's Donor Lymphocyte Infusion went fine.  The DLI was really nothing special.  It was like getting any other blood product.  Hopefully this will boost my immune system a bit. 

 

With the DLI done, I am pretty much done with what Mayo can do for me.  So we started the conversation about getting back to Sioux Falls. 

 

In fact, I am in transit right now.  They wanted to transfer via ambulance.  Right now I am about half way between Rochester and Sioux Falls. 

 

My preference would be to go home, but there are a few things to sort out with my meds that need to be done inpatient.  At least I will be closer to home and the kids. 

 

So as of this afternoon I am back in Sanford Hospital.   It will be a welcome change to Rochester Methodist.  I'll get all my nurses back and be much more comfortable.  There are lots of smart doctors that treated me at Mayo, but it often seemed like there were too many cooks in the kitchen. 

 

I am feeling fine for the most part.  Some stomach issues mainly due to the doctors messing with my meds.  I think if I get back on the regimen I was on prior to heading to mayo I will be fine.   

 

Looking forward to settling in and seeing the kids tonight.

 

It is a good day. 

AML: My First Trip to ICU

Yesterday was an interesting day.

I woke up early feeling fairly good even though I had not gotten much sleep due to constant interruptions (nurses, machine alarms, 3am blood draws and so on) through the night.  I needed platelets so those were started about mid morning. 

I generally don't have issues with receiving blood products.  I usually get some Benadryl and Tylenol prior to getting an infusion just to be sure.  For some reason I started developing a fever late morning yesterday. 

Fevers aren't unusual for me.  I've had a few low-grade (less than 100) here and there during this stay.  This one was up to 102 which indicated something more significant going on.  In all likelihood there was some kind of infection breaking through.  So generally when a fever hits 100.5 or higher a  number of things happen. First they run blood cultures and urine to see if  they can identify the infection.

Blood cultures are no big deal.  They generally draw blood samples from my PICC and also directly from a vein.  They bottle these up and send them to the lab to see what, if anything, grows.  Results can take several days.  In the past these most often turn up negative, but I have had eColi, MRSA and Aspergillus appear before.  All 3 of these are quite nasty and can cause significant problems when in the blood stream. 

The problem yesterday was that not only did I put up a mid-grade fever, but my heart rate was at 150 beats per minute and my blood pressure was extremely low.  Put these 3 things together and the doctors here (all of them) got a little worked up. So... about mid afternoon yesterday they sent me up to the Rapid Response (Intensive Care) unit.  This unit can more constantly monitor my vitals and quickly administer drugs should my blood pressure keep dropping or should I go into cardiac arrest.  Both were serious possibilities.

You can imagine things move pretty fast in the Rapid Response Unit.  They sent me for more CT scans of my chest and abdomen.  I received extra red blood and platelet transfusions.  And they immediately started pushing fluids really fast.  They have these power cuffs where they can push a liter of fluid into my system in about 15 min.  The normal pumps usually take an hour, which is still quite fast. 

During all this, I felt fine.  Though it was all pretty serious stuff, none of it was causing any external symptoms.  By about 6:00 my fever had dropped and they had pushed about 5 liters of fluid which stabilized my heart rate and blood pressure.  No other drugs or major  medical intervention needed. It turns out I was just really, really thirsty. 

My blood cultures are negative so far and my CT scans are clear except for what is probably a minor irritation in my gut.  The dehydration issues are most likely the result of the chemo. Since my last treatment is today, my kidneys should do a better job of retaining fluid.  In all likelihood, I'll be transferred back out of ICU sometime this afternoon.  Going forward we'll have to watch my kidneys to make sure that no permanent damage was done. 

It was an interesting day to say the least.  Things are still progressing for my Lymphocyte infusion on Monday which opens the door to head home.  For some of the criticisms I've mentioned about the way things work at Mayo, I'll say everyone was at the top of their game yesterday and I was very well tended to by all the right people.

AML: Final Curtain

Well,  we got my bone marrow biopsy results back yesterday afternoon.  It wasn't what we had hoped for but fell in with what we expected.  I am now showing 20% blasts (leukemia) in my marrow.  So we got  10% improvement over the last treatment.. 

We've elected to complete the current course of chemo I am on.  So Tuesday I started chemo again.  I will be done on Friday.  Then we wait a few days and do the Donor Lymphocyte infusion(DLI).  I expect to be transferred back to Sioux Falls (or better yet, home!) by the middle of next week.  I will get any blood products I need as an outpatient at Sanford while we wait for the DLI to do its thing.  So the good news is I will be home shortly and I should be able to be home, home.

As far as prognosis goes, I'll be on wide spectrum antifungal, antiviral, and antibiotic drugs creating a artificial immune system for me.  Time will tell if my marrow can recover enough to produce red cells and platelets I need.  Though I can receive transfusions of those products, I would like to avoid daily transfusions and let my marrow do at least that part correctly. 

When I get out of here we'll just be trying to avoid infections that we can't treat.  Infections will be the biggest risk to me.  But, I don't intend to be holed up at home hiding.  There is still enough living to do.  This could go on for weeks, months or maybe years. No way to know really...  I'll take every day as a gift and want to make something of it. 

We're still getting so much support from all of you and it is very much appreciated.  Thanks for the ongoing prayers and the stories you are all sharing. 

AML: Can I Get a Break

I realize that not everyone follows me on Facebook and I haven’t had the energy to do a blog post myself. Sorry abut that. I’ll catch you up. 

It hasn’t been good news or very many good days.  The biopsy results showed that my marrow still had 30% blasts (cancer).  I guess that is significantly better than the 90% blasts that I started with prior to chemo, but was not the remission we needed and expected.  What poured salt on the wound was that some doctor (resident or fellow) just wandered in and told me the results and then left. (Andy was out for supper).  This place is such a machine…

The next morning my actual doctor (Hogan) came in and actually sat down to have a talk.  Of course Andy wasn’t back from the Gift of Life house yet and was really frustrated to miss this.  Dr. Hogan took me through the options and kind of laid everything out there.  His bedside manner is so much better than the indifferent gentleman (ass seem a bit harsh) the night before. 

So here’s where we are at.  I am still trying to get to a point where a DLI (Donor Lymphocyte Infusion) has the best chance of being successful.  That means another round or so of chemo and more time in-patient in Rochester.  The chemo is 2 days of high dose Ara-C (which has worked well in the past), then 2 days of Mitoxantrone.  I am currently on day 3 of these 2&2 treatments.  At Day 8 (Tuesday or Wednesday), I will have another bone marrow biopsy.  This will tell us if the chemo has lowered my blasts further. The hope is that the blasts are gone.  If so, we will immediately do the DLI.  If I still have blasts, we will decide to do more chemo or just go for the DLI.  Either way is a long shot and if\when we are at a point where the discomfort is too great, we can stop treatment. 

In the meantime, my mouth sores came and went.  I got an infection in my gut (neutropenic colitis), but the antibiotics seem to have taken care of that.  I developed a sharp pain\catch in my left hip and that has passed.  It has just been one thing after another, and it has kept me in-patient at Rochester Methodist (food still sucks).  The drugs are good though, as long as the doctors don’t get in the way.   I haven’t eaten much over the last 2-3 weeks.  I’d say I get less than 500 calories a day.  I didn’t know someone could survive\function on that this long

My current outstanding issues are a prolonged QTC with my heart rate.  This is caused by the chemo & meds they give me and restricts other meds I can use, especially nausea meds.  It puts me at a high risk for sudden heart attack.  It should go back to normal after all the chemo is done but has to be closely monitored.  Also, a recent chest CT (It seems like they have some kind of contest on who orders the most CT scans) showed some spots that the doctors figure is pneumonia.  I just got back from a bronchoscopy to get a closer look.  I had to be transferred to St. Mary’s Hospital for the procedure.  My first ambulance ride, yeah!  Plus side… Fentanyl and Propofol.  But now we wait once again for test results. Pneumonia has always been one of my biggest fears through this.  

Mom,Dad, Tom and Rogene visited this weekend. Andy busted me out on Sunday so we could all go see Iron Man 3. Epic… and a much needed escape.  My appetite is starting to get better.  So perhaps after a mess of bad days things are looking up.  I love the stories everyone is sharing.   If you want to add more of your own, you can comment here or hit my public Facebook page if you want to drop photos.  https://www.facebook.com/CureJonsCancer

My goal now is just to get home.  Whether that is back to Sanford 6000 or truly home.  

AML: Mayo Experience

What a strange spring.  Here it is May 2nd and Rochester got 8 inches of snow this morning.  Andy couldn't get the car out of the parking lot and the house shuttles weren't running.  She hitched a ride with a woman who had a large truck, otherwise she would have been snowed in today.  It is still snowing... big, heavy, wet flakes. 

I am still an in-patient at Rochester Methodist.  The mouth sores were pretty bad but the pain meds helped a lot.  Now I am left with what feels like a bad sore throat, which is manageable.  My electrolytes are all messed up so I am getting a lot of magnesium and potassium via IV.  I have also had most of my antibiotics and other meds given IV because I could not swallow the pills.  Today we will work on switching me back to oral meds.  The goal would be to switch me back to outpatient tomorrow. 

There have been a few frustrations during this hospital stay.  Maybe I was spoiled at Sanford Hospital in Sioux Falls, but I sure do miss my Sanford floor 6000 nurses.   There are so many doctors and nurses here at Mayo that there has been a few cases where the left had had no idea what the right was doing.

It's a bit complicated to explain.  Since I was admitted to the hospital through outpatient this time, I have a whole new set of doctors then I had just a few weeks ago when I was admitted through the hematology department.  So we had to go through the whole "getting to know me" phase.  They ran their own tests to find out why my heart rate is a bit high (it's just normal for me).  Pretty much the same thing I did a couple of weeks ago.  In fact, I have not seen any of my original doctor team that started with me on this round of chemo. 

Even the nurses change so often and rarely repeat so I am always retelling my story on pretty much a daily basis.  Sometimes they don't seem to know why I am in here and start asking me all kinds of questions.  Questions I don't feel like answering because it hurts really bad when I talk.  Luckily Mom or Andy have been here to be my voice. 

So the repeating of tests has and all the new faces isn't a huge deal.  Everyone here is quite nice, but because there are so many levels of nurses & doctors involved here (medical, outpatient, hematology, transplant) they seem to get lost in their own shuffle. 

The worst of it was a few days ago when I was admitted.  The doctor there told me my platelet count was 9 and that I would get platelets after being admitted.  But once admitted I got a whole new set of doctors and nurses.  Though we asked multiple times they never gave me the platelets.  The next morning my platelet count was down to 5 (tested at 3am).  It took them until 2pm to actually give me a unit.  In all likelihood, my platelet count had continued to drop.  It got scary because bruises just started appearing all over my body.  I started getting some stomach pain and for all I knew I was bleeding out for the inside. 

Had we not been nagging them so much about platelets I wonder how long it would have taken.   Later the doctor came in and explained that though the notes of my outpatient doctor specified that platelets were needed, no order was submitted and it was overlooked (even though I kept asking the different nurses).  I kind of grilled the doctor about this because the protocol is to transfuse if my platelets are under 15. He said they usually do it if under 10 unless the patient has a history of excessive bleeding.  He never bothered to ask if I did have a history of bleeding, which I do.  Since then we have been playing catch-up and I have had 4 platelet infusions. 

The people here are great, but there are so many moving parts to the Mayo machine.  I miss home and I miss the care I received there.  I have no doubt that the doctors here are among the best there is, but they could sure take a note or two from Sanford Hospital on how to care for the patient.  From the quality of the food to knowing the patients history, I would so much rather be on Sanford 6000 then where I am at today.

This ended up being longer then I though it would.  I'll get results from my biopsy tomorrow and then we will have some real news to tell.  The pain is greatly improved.  Andy is here with me. Mom went home for a few days.  In all, things are progressing well. 

AML: Salvage Chemo - so far so good

So far so good. I don't have a lot of energy so this will be short. I finished chemo on tuesday I think. I've had a higher heart rate, but the tests turned up nothing so they are not worried about it. I had been getting quite restless in the hospital. So since I have been doing quite well, they are allowing me to go to outpatient.

I will have daily hospital visits for now so we have to stay in Rochester for the time being. Bone Marrow biopsy is tentively scheduled for May 1st.

Brent and Jessica briought all the kids down on sunday for a visit. It was a special time to see them and have them in my room. I miss them so much when I am away from them. I am praying this treatment works this time. I need to see them grow up,

Mom and Andy have been with me the whole time, i am thankful for that, There is no better comfort then to have them with me through this. i know there are many parying for me. Please keep it coming.

AML: Salvage Chemo - Update

So far things are going quite well.  When I arrived at Mayo I could barely walk because of pain in my hip and groin areas.  My heart rate was also high.  A normal resting heart rate for me is about 80-100 beats per minute.  When I came in my resting heart rate was about 125.  The doctor kept asking me if this was normal but up until now, I hadn't paid attention to what normal was for me.

At first the doctors said it wasn't anything to be worried about but they did order some tests which I have mentioned in my prior post.  I was also scheduled to have a CT scan to see if they could find out why my heart rate was so high.  In the meantime we started the chemo. 

When I woke Friday morning I no longer had pain in my hips.  I could walk around with little evidence of the searing pain I had before.  In fact, I felt quite well... better then I have since back in October before this all started again. As an added bonus, my heart rate has returned to normal levels.

When the doctors did their rounds Friday morning, they were quite happy that the chemo acted so quickly to relieve the pain and heart rate.  Their comments led us (Ira and I) to the conclusion that they were much more concerned about my high heart rate then they originally let on. 

I have just started day 3 of chemo.  The doctors are impressed that I have not had an nausea or stomach issues yet.  They even suggested that if I continue to tolerate the chemo this well I may be able to switch to an outpatient some time next week.  The main advantage of being an outpatient is that the food is better. I guess I was spoiled at Sanford.  The food here really is quite poor.

Mom and Dad arrived last night. Uncle Mike is watching the cattle so Dad could make the trip (Thanks Mike!).  The girls are at the Sioux Falls Storm cheer camp today along with their cousin McKinley.  They really enjoy dancing and this is Layla's first time performing with her big sisters. They perform at halftime of tonight's Storm game.

Today they stopped the IV pain meds.  My blood sugars spiked above 300 so I have been getting insulin.  I don't generally have blood sugar issues but I was given steroids yesterday and that resulted in the higher sugar levels. The huge piece of Bunnie's coconut cake from the Canadian Honker also might have had something to do with it (Thanks Ellie!). 

So far so good seems to be the common answer for how things are going now.  Thanks for all the messages.  I can feel the love. 

AML: Salvage Chemo

Here's the plan.  Tomorrow morning around 10 or 11 my chemo will start.  It is called salvage chemo because it is kind of a last effort to kill the AML with chemo.  It is only done when multiple treatments have failed.  It's the most heavy duty, bad-ass chemo I will have had. I met with Dr. Hogan today and we talked things through.  My options were either give this a shot or stop treatments. 

I didn't fight through Nov, Dec, Jan & Feb to give up now.  So we're on. 

The intent it to do the salvage chemo, a bone marrow biopsy at day 14 and then if we have achieved remission, we will try to perfectly time the lymphocyte infusion from my original donor cells (leftovers from transplant) to boost the immune recovery.  Then use new immune system to "Smash Camcer!" said in my best incredible hulk voice. 

Here's the thing the chemo (carboplatin and topotepan) is going to be nasty.  The risk of death during my 5 days of continuous chemo, failure of bone marrow recovery or risk of fatal infection are all much greater then any other treatment I have had.  This really is a hail Mary.   

I didn't get a real good vibe from the chemo team about this treatment. They will hit me with a high dose.  98% of the time, there are mouth and throat sores as a result of the chemo.  If you recall, those same sores from my stem cell transplant were the most painful part of this whole experience.  I am scared of the sores  and scared of this treatment. 

However, I am in a different place then I was in December.  My head is on straight. I am coping better and I just physically fell better then I felt back then.  As long as we don't fry an internal organ, I can fight through the rest. 

I am away from Andy and the kids, but am in good hands.  Andy's Dad is here with me and I am so happy that he is here.  He has become one of my best friends as we have spent so much time together during all the treatments.  Andy will join me Sunday and I am sure I will see Dad and or Mom as soon as the whether and calving let them get away.  As a man of 34 years, I am not ashamed so say that I definitely want my mommy. 

I miss all friends at Dak who I have been away from for far to long.   I give thanks for all the extended family and friends that have lifted me and my family in their prayers and gifts.  The strength in those prayers have gotten me this far.   I know these continuing prayers will carry me through the new treatment.  I am comfortable that no matter what happens now, things will  play out as they should.  I am at peace with that.  I can only promise that I am going to leave it all on the field.

Go figure...The Truman Show is on AMC right now.  I like that show. I guess it seems fitting to close this post as he might...

"Good morning, and in case I don't see ya: Good afternoon, good evening, and good night!"

AML: I'm Not Done Yet

I've got a bit of bad news.  It turns out the Vidaza treatment didn't keep my cancer away for long.  I have relapsed yet again. The treatment itself did go pretty well. My white count was slow to come back but that is how my prior (the bad one) Vidaza treatment went.  This alone didn't raise any red flags.

Last Thursday I was to have another bone marrow biopsy (must look like Swiss cheese back there) This was biopsy lucky number 13 if I have counted correctly.  The intent was to just confirm remission prior to me returning to Mayo for a checkup.  About the same time I started having terrible hip and back pain just like when we first started this journey in Sept 2010.

I got the results yesterday. So in a short timeframe, we had to make arrangements to get to Mayo.  Today I checked in to Rochester Methodist Hospital (Mayo) for what they call salvage chemotherapy.  I don't have a lot of details yet on my planned treatment.  We (Andy's dad Ira is taking first shift this time) arrived about 1:00 and I was settled by two. 

After 2:00 today I had 3 blood draws for lab work, an IV line for fluids and pain meds (my hips), a brand new Picc line for treatment, an electrocardiogram, an echocardiogram, X-Rays to see if we can sort out what is up with the intense pain in my hips.  Tomorrow is another bone marrow biopsy.  They are saying that Thursday they will probably start chemo. 

There are a couple of things that the doctors tell me is unusual.  First the hip and back pain.  But more significantly, my white count is low (1.3) but my hemoglobin and platelets are in the normal range.  Hopefully things get a little clearer as we progress through tomorrow. 

For now, the pain meds have made me comfortable.  I am settled in.  The intent of more chemo is to get remission and then do a lymphocyte infusion from my original donor right away. 

It's a bummer to be away from Andy and the kids.  Andy will join me next week.  It's certainly frustrating to have to go through more of this.  Still, at least there is something yet to try.  After the lymphocyte infusion, we don't have any other options. 

I'm hanging in there as best I can. 

AML: New Treament Going Well

Once again I do a poor job of posting when I am at home.  You would think with all the free time I'd be able to get to it.  It's just been tough to get motivated lately.  That's partly why I am still holding off returning to work.

So there is a fair amount to tell. 

I'll address some of the prior posts that Andy and my Mom wrote.  I was pretty much oblivious to my condition.  I remember just waking up on a Thursday to find I didn't recall much since the prior Saturday.  The pain meds and infections caused.  I totally missed the Superbowl, even though I watched it with friends.  I played Xbox (Halo 4) with them as we traditionally do on Superbowl Sunday and I played pretty much as my awesome self.   I remember none of it.  This was the point Andy was told I may not leave the hospital. Then from my perspective, I just snapped out of it.  I believe all your prayers made a difference.

Since I have been home, my blood counts and immune system recovered fairly quickly.  In fact, when I started my last treatment, my counts were approaching what was normal for me.  I am now doing a Vidaza treatment every 6 weeks or so.  Intent is to keep the leukemia away.

Today I had a Dr. appointment.  It has been almost 2 weeks since I finished chemo (outpatient)  My counts (except platelets) have been minimally affected. My immune system is still in decent shape.  This is all good.  My doctor is very pleased. 

Speaking of my doctor, I have had to select a new one.  My doctor is leaving Sanford. It's all good. I have been in the hospital enough I have met all of them.  I'll likely need platelets next week and I'll keep you updated on how things progress.  I'll go to Mayo in about 4 weeks if my counts are good. 

For now. I am doing well.  I need to get my endurance up, but that will take time. 

I Believe in Miracles...

This is Crys -- Jon's mom. I thought perhaps we needed to update Jon's blog for those that follow from a distance.

I was with Jon in the hospital back in January when a retired minister from Jon's church stopped for a visit. He talked to us about miracles he had experienced in his life. The thing about miracles he said, is that you have to ask for them. And so we asked -- through all the many links of the prayers chains that are continually being offered for Jon, we asked God for a miracles for Jon. As Andy shared with you in her Feb. 3rd blog "Oh Crap", the hospital staff seemed defeated. They doubted that Jon would ever come home. They told us Jon would probably get an infection that he wouldn't be able to fight. They talked about 'supportive treatment' and 'DNR codes'. then on Feb. 11th Andy shared with you our 'glimmer of hope'.

I've learned something about miracles. Sometimes they come in an instant - the 'pick up your feet and walk' kind. But sometimes they require a lot of very hard work, with many ups and downs along the way that will try to test your faith. But the result is still a miracle. Jon is home from the hospital. He's been home for what will be 2 weeks on Friday. It is a slow process, but each day he gets stronger. His blood and bone marrow are clear of any leukemia blasts. He is off of all the pain meds that had his mind so cloudy. He is learning to eat again. His immune system continues to improve -- it is now better than hallway back to normal. But most of all he is home with Andy and the kids and they are treasuring each day.

So what is the plan from here? The doctors want to do more chemo in a week or so to keep the AML from returning. As I understand it,  it will be a different type of chemo -- one that can be done as an outpatient and won't necessarily require a hospital stay unless Jon gets sick. Then perhaps in a couple of months Jon and Andy will go back to Mayo for a consultation.

And so we are trusting in God's miracle and celebrating life. Each day is a gift.

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,