leukemia still aggressive - new chemo starting today

Things have been rough and are getting rougher.

First I am moving our things to new lodging today to a cheaper option - I don't have that mailing address but we can't receive mail at the previous address anymore.  

Chris had a bone marrow biopsy last Wednesday.  The results we got on Thursday showed he had 86% blasts.  Basically this means that the chemo they tried is not working and the leukemia is coming back aggressively.

We should find out and he should start this week whatever chemo they are going to try next.  The goal is obviously to get him into remission and then he will need a stem cell transplant.  Because he has relapsed during the initial chemo (hyper-cvad) and the salvage chemo regimen (augmented hyper-cvad) is not working his prognosis is not good.

Timeline of events:

Thursday: find out bad news about bone marrow biopsy.  was told we could have a day off to go see magnus.  take chris to his IV meds appt, go to hotel & pack, come back to MDA and pick him up and head to georgetown.  Arrive at hotel at about 11:30 p.m.  We had to stay in a hotel because chris has been considered neutropenic since february 1st, so sharing a room with magnus is not a good idea.

Friday: 45 minutes after arriving at hotel Chris gets a fever.  I take him into the ER at the hospital in Georgetown.  I leave the ER at about 5 a.m. when his dad arrives.  I get about 3 hours of sleep at the hotel.  Chris' parents bring Magnus into the ER to visit his dad while I'm sleeping.  I wake up and go see Magnus.

Thru Sunday:  Chris spends his birthday in the hospital (Saturday).  Chris gets discharged at about 5:30 p.m. and I drive him straight back to Houston.  I take him into the ER at MD Anderson when he develops fever chills and is disoriented at the hotel (couldn't tell me where he was, wasn't making sense).  We arrive at ER close to 11:30 and a few hours later he is less disoriented.  He needs to be on oxygen and a heart monitor so we have to wait for a specific type of room to open up on the leukemia unit.  We wait 16.5 hour in a tiny & loud ER room ( there is loud construction going on on the other side of the wall).

Monday: He finally gets a room at about 5 p.m. on the leukemia floor.  He will be here for a week or more.  They are doing tests to try and figure out if he has an infection or not.

I'm skipping ahead to today, Wednesday:

So far no infection has shown up in his labs.  He is feeling very miserable.  He spiked another fever last night and I stayed with him until about 3 a.m. - he had to go get a chest CT after midnight.  They want to make sure he doesn't had the flu - he's been congested for a few days.  So they are testing for that today.

His new chemo regimen has been decided and he will start it this afternoon or evening.

He will be getting a combination of Nelarabine and Cyclophosphamide over the next five days in the hospital.  He has a 20 to 30 % chance of going into remission with this regimen.  We won't know for another month or so if it's working, he'll have a bone marrow biopsy about 21 days from now.  The same routine from the last chemo they tried.  If this does not work then they will have to try a clinical trial option - those usually only have a 5% success rate.  If he does not get into remission he will die.

We will need to be at MD Anderson on a daily basis for awhile again.  

If they are able to get him into remission he has to have a stem cell transplant.  The odds of this disease not killing him are not good.  This is our grim reality.  There will be no point in his life that he will be cured.  All we can hope and work towards is getting him into remission and keeping him there.  Because he has relapsed in treatment and isn't responding to the chemo he's had so far the odds of him relapsing again, if they are able to achieve remission, are very high.  

We will need to be at MD Anderson for the next 3-6 months.  

These chemo regimens are incredibly rough on Chris.  As tough as things have been they are only going to get tougher.  He has been and continues to be disoriented off&on.  This may get worse when the chemo starts.  He continues to need near daily blood & platelet transfusions.  

Chris has had friends that live here and friends that live as far as 11 hours away come visit him.  Even tho he isn't always able to spend much time with them depending upon how he feels, having people come see him helps a lot.  This process can feel very very lonely.  

There is no way to describe it unless you yourself have had an aggressive cancer or been a caregiver for someone with cancer.  It's the most horrible thing I have ever had to deal with in my life and it's ripped away any sense of normalcy.  Our belongings are in storage and we have no home.  Our son hasn't been in our lives on an even weekly basis since the middle of July.  Chris needs care nearly 24/7 when he isn't inpatient at the hospital.  There is no break from this, not for us anyway.  

I'm exhausted and I miss my son more and more each day.
NOTE: if you read this leave a comment.  I go out of my way to do these updates and text ppl to let them know they are posted.  I need some acknowledgement it's been read.