Chris died yesterday

My heart, my husband, my best friend died with me by his side yesterday March 18th.

I can't believe he is gone, it happened so fast.  I am glad he is not in pain anymore.  The doctors told me Thursday morning that there was nothing more they could do for him.  He died close to 4 p.m. the following day.

I'm numb and heart broken and I'm so many things that words can't express.  I wasn't ready.  Time seems to have stopped and be going in fast forward all at the same time.


Christopher Martin Hellberg
February 26th 1975 - March 18th 2011

re: CT scan

Had some questions about his CT scan coming back normal and if that meant they couldn't detect any cancer.

The short answer is that they didn't do the CT scan to detect cancer; they did it to see if there were any masses in his abdomen that could explain his enlarged tummy & sharp pains in that area.

The leukemia/cancer is still in his throat lymph nodes, spleen, inguinal lymph nodes, & bone marrow.

We won't know for about 2 more weeks if the chemo he finished up 7 days ago is putting him in remission.

words

CT scan came back normal.

This recent chemo has left Chris weak enough that he is unable to walk unassisted from his hospital bed.  Even with assistance he can't walk very far.
He is too weak to go to the Rehab floor at MDACC so he will be getting transferred to a hospital a few blocks away (Kindred) so he can work on getting the strength back to walk, dress, and shower on his own again.
Right now he is too disoriented to be discharged from MDACC.  The staff & I are working together to figure out how to re-orient him.  The doctors are adjusting his various meds and I have a list of things that help keep him calm.  He doesn't know where he is much of the time, the day it is, the month, or the year.  When he does know those things he isn't able to articulate it to me and medical staff.  He has trouble finishing sentences.  He is anxious and scared.

With his physical capabilities as limited as they are he can't stay at the trailer/rv I moved us into last week.  A few days ago I got a call from one of the organizations I put us on the waiting list for housing, Aishel House.  Here is a link to their website:
Aishel House Mission statement

I can't even begin to express how thankful I am that we have this studio apartment to stay in at a reduced rate for the next ___ months.  This will be the 5th place I've moved our belongings to in Houston in less than 2 months and it's such a relief to know we have somewhere to stay that we can afford and that meets our needs.  I'm within walking distance of MDACC.

I'm exhausted and trying to figure out how to fill my empty tanks up when Chris needs someone by his side that is strong and there for him everyday.  Everyday is roller-coaster of emotions and events.  I'm hanging on as best I can, it's a lonely road.  I'm thankful for the new & old friends that are helping me thru this.

If you want to help don't wait for me to ask.  I have only enough energy to bathe, feed, and clothe myself so I can give Chris all my strength.  I'm sobbing in the hallways but I have to hold steady in his presence.  He needs strength.  If you can come here and be strong for him then please come.  He needs it and I need it.  Having me be the only person that has consistently been here for him is wearing us both down.

When I can get a strong enough wifi connection at the hospital or at our apartment I skype with Magnus.  I have to make sure he sees me smiling and strong too.  I may be crying before and after the call but I can't let my husband or my son see me sad and worn out.

We will be here for at least 6 more months.  IF he responds to his current chemo then he'll need a few more cycles of it.  IF they find a stem cell donor he'll be in the hospital for a month.  Then he will have to  go to appointments everyday for 100 days after his transplant.  Throughout this whole process he has to have 24/7 care.  I've been doing this for over 7 months with him; I and we can't keep doing it alone for the next 6 months.

quick update

Chris finished his last dose of chemo meds last night.
He has a new severe pain in his abdomen.  His abdomen is visibly swollen.  Had CT of abdomen done late afternoon today.  Hopefully results tomorrow a.m.  I know the leukemia is in his spleen so hoping it does not have to do with that.
He will have to stay inpatient for maybe 2 more weeks because of his weakened mobility.  Should be getting moved to rehab floor in a few days so they can work with him everyday on rebuilding his strength.

a bit better today

Chris is doing better today.  He's still mostly sleeping but he is much more lucid when he is able to stay awake.  His appetite is also back, a good sign; I brought him in kolaches this morning at his request.  Bowel issues are still an issue, effect of the chemo.  If he is up to it I'm planning on wheelchairing(I like to make up words) him out of his room for a bit and maybe even outside for awhile.  He's either been in a car or a hotel or a hospital room for over a week.

I got him some Dr. Suess pj pants - I knew they'd amuse him.  

He hasn't really been able to use his phone these last few days.  

More info after the page break.

rough day

His medications and chemo are interacting today so he's been near comatose the whole day.  Chemo causing diarrhea bouts and weakness, needs help sitting up and more.
Possible infection in his chest - none of the test results have come up with what it might be.  He's receiving various antifungals & antibiotics to treat.  Breathing issues so using oxygen off & on.
Bed alarm set to on whenever I leave to room, I'm bunking here tonight.  Chemo doses end Monday I think.  He's a fall risk with his balance issues and with his low platelets any small fall could cause serious internal bleeding.  Blood & platelet transfusions earlier today.
State budget cuts leave no room for sitters to watch just him, MDACC is a University of Texas institute.
Blood pressure up so they doubled his blood pressure med dosage.  Stopped some of his other meds to attempt to get him a bit more lucid.  He started talking a bit more and had some better mobility an hour or two ago, he is asleep for the night now.
Lots of fluid retention in his limbs, they are quite swollen.  So he was given a double dose of a med that makes him urinate lots and frequently, a challenge with his semi-comatose state and balance issues.  There's probably more to list but my brain & body are exhausted.
I used to take the time to text over 20 people when I updated this blog, since most don't respond to my texts and request for acknowledgement I'm not doing that anymore.
Note: http://chriscranecancer.blogspot.com/2011/03/art-glass.html

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.