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.  

Chris' 36th birthday this Saturday, February 26th

I probably should have posted this sooner than 6 days before his birthday.  At any rate Chris is turning 36 on the 26th.  

For those that want to send cards or gifts here is our address at the hotel:

Chris Hellberg

Extended Stay Deluxe

1301 S Braeswood Blvd

Houston TX 77030

I've excluded the room # because we may be switching rooms and we will get any mail from the front desk regardless of what room # we are in.

For those that want gift ideas he said he'd enjoy gift cards to Barnes & Noble.

He is a huge West Ham United fan so anything having to do with them he'd love.  Anyone that wants more specific West Ham United gear he'd like shoot me a message.  

And of course he would love an appreciate any sort of gift or card.  

Something else that's pretty simple that he would love is if people folded paper cranes and sent them to him.  

We knew some about the legend of 1,000 paper cranes but until we walked past on of the many waiting rooms at MDA and saw them hanging from the ceiling and read a caption we had no idea they had a connection to leukemia.

The legend goes that a Japanese girl, Sadako Sasaki, who was 2 years old when the bomb was dropped near her home in Hiroshima.  Here is a summary from the wikipedia page found here: http://en.wikipedia.org/wiki/Sadako_Sasaki

"Overview

Sadako was at home when the explosion occurred, about one mile from Ground Zero. By November 1954, chicken poxhad developed on her neck and behind her ears. In January 1955, purple spots had formed on her legs. Subsequently, she was diagnosed with leukemia (her mother referred to it as "an atom bomb disease").[1] She was hospitalized on February 21, 1955, and given, at the most, a year to live.

On August 3, 1955, Sadako's best friend Chizuko Hamamoto came to the hospital to visit and cut a golden piece of paper into a square to fold it into a paper crane, in reference to the ancient Japanese story that promises that anyone who folds a thousand origami cranes will be granted a wish by a crane. A popular version of the story is that she fell short of her goal of folding 1,000 cranes, having folded only 644 before her death, and that her friends completed the 1,000 and buried them all with her. This comes from the book Sadako and the Thousand Paper Cranes. An exhibit which appeared in the Hiroshima Peace Memorial Museum stated that by the end of August, 1955, Sadako had achieved her goal and continued to fold more cranes.[citation needed]

Though she had plenty of free time during her days in the hospital to fold the cranes, she lacked paper. She would use medicine wrappings and whatever else she could scrounge up. This included going to other patients' rooms to ask to use the paper from their get-well presents. Chizuko would bring paper from school for Sadako to use.

During her time in the hospital her condition progressively worsened. Around mid-October her left leg became swollen and turned purple. After her family urged her to eat something, Sadako requested tea on rice and remarked "It's good." Those were her last words. With her family around her, Sadako died on the morning of October 25, 1955 at the age of 12.

Memorial

After her death, Sadako's friends and schoolmates published a collection of letters in order to raise funds to build a memorial to her and all of the children who had died from the effects of the atomic bomb. In 1958, a statue of Sadako holding a golden crane was unveiled in the Hiroshima Peace Memorial, also called theGenbaku Dome. "

ER visit for a seizure and bone marrow biopsy results

First let me start out by saying that Chris is ok and was not admitted to the hospital; and he is now taking daily anti-seizure medication.

Friday night I woke up at about 2 a.m. because the bed was shaking.  Chris was having a seizure so I called 911.  The seizure stopped while I was on the phone.  His eyes were open the whole time but he couldn't respond to anything I said to him.  When the 5 EMT people crowded into our small hotel room about 10 minutes later he was able to respond to their questions correctly.  He was a bit disoriented and scared but alert.  He felt well enough for me to drive us the 4 blocks to MD Anderson's ER.  We didn't want him in the ambulance filled with tons of germs with his counts so low, nor the charge for a 4 block ambulance ride.

We arrived at the ER close to 3 a.m. and they discharged him about 14 hours later, close to 5 p.m.  He had bloodwork, a head CT, an EKG, and an EEG.  EEG is a test that measures electrical impulses in the brain and it can detect seizure activity.  Chris has not had a seizure before this one and thankfully he hasn't had once since yesterday morning either.  

The head CT came back normal and the EEG didn't show any seizure activity at the time it was done.  He saw 2 different neurologists and he was put on an anti-seizure medication.

The neurologist said the seizure is from the brain injury he sustained in January of 2007.  As scar tissue develops it increases the risk of seizures and the neurologist said since it has been about 3 years from the date of his traumatic brain injury it wasn't surprising that he had a seizure.  So it is not related to his leukemia or treatment for leukemia.  He will have a follow up appointment with a neurologist here in about 2 weeks.  

It was a very scary experience for both of us.  When he seized he bit down very hard on his inside lower lip and tongue and those areas are in rough shape.  They are quite painful and make eating difficult.  I got him some over the counter mouth numbing ointments which seem to help.  It will take extra long to heal since his counts are low.  He ended up getting a platelet transfusion in the ER because they were quite low.

Soon after his discharge we went to sleep and got a good 10 hours of sleep.  He wasn't feeling too great today and moved slower to get to his blood draw and IV meds appointment.  Thankfully he is done with one of his daily IV meds, the antibiotic for the blood infection.  He is now back on his daily pill antibiotic which means he just has the daily hour long IV infusion for his anti-fungal med.  He didn't need blood or platelets today so it was only an hour in the infusion room!  

His white blood cell count is up to 0.4 today - the highest it's been since February 1st!  Hopefully it will keep climbing!

Chris had a bone marrow biopsy on a few days ago and the Dr. told us the results on Thursday.  The biopsy he had about 3 weeks ago showed he had 71% blasts in his marrow, this weeks test showed it has gone down to 17%, a good decrease! Anything below 5% is considered remission.  

He will have another bone marrow biopsy in a few days.  Depending upon the results he may be starting the 2nd round of the augmented hyper-cvad chemo as soon as the end of next week.  For now we are planning on being here in Houston another 3-4 weeks.  We should know more by the end of the week.  

Two friends drove down from Wichita to other day for a quick visit.  Chris is feeling well enough that we are going to visit his favorite Cajun restaurant here - the Ragin' Cajun.  It's nice to socialize with some non-medical staff, that's for sure.  

I also made friends with another caregiver thru the leukemia support group that meets at MD Anderson every two weeks.  Her husband also has ALL and they are from out-of-state and have been here nearly a month.  They have a son Magnus' age as well as two older children (15 & 21) who are being cared for by other family while they are here.  We ran into them at MD Anderson today so we got to meet each other's husbands today too.  It's been helpful to have a new friend who is going thru the same thing - we checkup on each other almost everyday.

some info

I did a bit of tabulating and came up with some figures.

Since January 13th:

• We have been going to MD Anderson daily for 35 days.  
• He has been inpatient for 20 of those days.
• On his outpatient days we have been at MDA for as little as 3 hours and as long as 15 hours.
• He has had his blood drawn at least 35 times since we have been here.  
• He has had 2 bone marrow biopsies.
• He has had 6 lumbar punctures with chemotherapy.
• He has had 1 PET scan.
• He has had 3 chest xrays.
• He has had 2 head CT's.

I could probably list a lot more stuff but that's enough I think.  Knowing numbers and facts and data helps calm me so listing these things isn't meant to overwhelm, just to inform.  

Tuesday was a very long day; we got at MDA at 6:45 and didn't leave until nearly 10 that night.  

We are hoping to learn some news by the end of the week about whether or not the chemo is working.  We've learned that tests results can, and often do, take much longer than they should.  So we may not know anything until next week.

Chris continues to need blood and platelets often and his low counts leave him with little energy.  However we did venture out to a movie recently, Tron in 3-D on and IMAX screen.  Chris has been wanting to see Tron since it came out and neither of us had seen a 3-D movie before, it was fun!  It felt good to do something "normal".  That was our first public outing together excluding hospitals, cancer centers, and grocery shopping in something like 2 months.  We are hoping to visit the art museum as his energy level permits.

I know I mostly stick to the "facts" in this blog and don't go into much about how we are feeling, that's just my nature I suppose.  We have our good and bad days, it's a hard experience; we miss our little boy more than any words could even begin to describe.  The days we have to spend at MDA 8 or more hours tend to wear us both down pretty quickly.  But in the midst of all of this I still feel quite lucky.  We have the support of so many family, friends, and strangers.  I know there are others going thru this horrible journey with cancer that aren't as lucky and have to do much of it alone.

His counts:

some good news - LP's clear!

Yesterday Chris awoke with more energy than I've seen him with in over a month.  At his Dr.'s appointment we found out his last 2 lumbar punctures were negative for leukemia cells!!  

This means he only has to have one lumbar puncture with chemo a week instead of 2!  Because his type of leukemia (ALL) is so aggressive he still has to have them once a week for the next 4 weeks.  

And his counts are slowly climbing - yesterday was the first day in something like 2 weeks that he didn't have to have blood and platelet transfusions!!  

I took this picture of him when we were at one of the trans units for his IV anti-fungal and antibiotic treatments.  Chris is on a special antibiotic because when he was admitted for neutropenia they found a blood infection but the antibiotic was successful in treating it and the last 3 tests have shown up negative for it.

He has daily appointments at MD Anderson for the next 10 days.  Hopefully by this time next week we will get some information about whether or not the augmented hyper-cvad chemo regimen is working to put him into remission.

He doesn't have any appointments until 3 this afternoon so he got to sleep in for the first time in a long time!

probably getting released today

Chris got moved back to the leukemia unit G16 on Saturday so it was good to be back in a large room.  His hospital room is bigger than our hotel room by far!  

It's been a rough stay with some painful side effects and having the low platelets and blood counts prolongs the recovery from them.  The staff here continues to be wonderful.

I went to donate blood at the MD Anderson blood bank on Sunday with a new friend, Lori, who donated platelets.  All blood products donate at the MD Anderson blood bank go directly to help patients there.  They are experiencing a shortage of blood products because of the recent winter weather.  I've encouraged anyone in the Houston area to please go donate blood products.  Chris has had blood and platelets or just platelet transfusions everyday for at least the last week.  

We will have appointments everyday for the next week or so at MD Anderson for a combination of IV meds, blood draws, and doctor appointments.

He is scheduled to have a bone marrow biopsy towards the end of next week, the results of that biopsy will help determine if this augmented chemo regimen is getting him into remission.  After the biopsy and other tests are done his doctor, Dr. Thomas, will determine the next step in his treatment.  

I'm sure there were other things I wanted to share but right now I can't think of them.  

He is scheduled to get released today.  Before we can go he needs a platelet transfusion and also we have to wait until his schedule is set up for tomorrow and the next few days.  When he was released last Monday it took until nearly 4 p.m. to get his schedule set up so we are having that time frame in mind for getting out today too.  

took Chris to the ER last night for fever

Chris starting developing a fever last evening and when it got up to 102.2 we headed into the ER at MD Anderson around 10 p.m.  

When his blood counts are so low it's called neutropenia and when he gets a fever he has to go straight to the ER.

Here is a link to more information about neutropenia:

http://en.wikipedia.org/wiki/Neutropenia

Basically his white blood cell levels are so low his body can't fight off an infection.  Since fever is a sign of infection he has to go straight to the ER and get blood tests, urine tests, chest x-ray, and IV antibiotics.  They test for any sign of infection and will keep him in the hospital for at least a few days.  He has been admitted to the hospital for neutropenic fever 5 times in the past.  

I got back to the hotel around 3 a.m. after he was situated in his room.  He is on the 6th floor and we sure were spoiled in the brand-new room he was in on the 16th floor before.  His room is quite small but serves it's function.  

I don't have the blood count info from what they drew late last night but are the results from yesterday morning when we were at MD Anderson for IV meds and platelets:

We weren't greatly surprised by him having to go to the hospital for neutropenia.  His counts are quite low and the chemo he had the previous week is even more intense than any he's had in the past, making neutropenic fever a near predictable event.  

I'm going to head into visit him in a bit after I wake up, neither of us got much sleep last night.  Hopefully he's sleeping now and I'll wait to see him until he can get some more rest.  

counts low but no fevers!

I've been meaning to update for a bit but our schedule has been a bit busy since he got out of the hospital.  Brief summary of events since Monday:

Monday:

finally released a bit after 3 p.m. and after an arduous check-in at the hotel we get our room around 5 p.m.

Tuesday:

Left the hotel at 7:45 a.m. and returned close to 9 p.m., loooong day.  Chris had blood counts, dr. visit, lumbar puncture with chemo, IV chemo, IV meds, blood & platelet transfusions.

Chris was adjusting to sleeping in a new place.  This combined with lingering disorientation meant we got 1-2 hours of sleep the night before this long day

Wednesday:

Slept in until 9 a.m.!  He didn't have anything until his IV meds at 7 p.m.  Got back to the hotel around 9 p.m. Before hospital trip I made Pad Thai w/Tofu and veggies from the place I mentioned before that our friend had delivered to us, it was delicious!

Thursday (today):

Blood drawn around 8:30, Dr. at 10:45, then IV meds and more platelets.  We got back to the hotel around 3 p.m.  I went to pick up more yummy entries that our friend paid for and had delivered to a Smart Meals location near us.  I made Yellow Curry w/tofu and veggies on Jasmine rice, delicious!  We have 3 more entries and 3 sides to eat over the next few days as well.  I'm excited to be cooking tasty, fresh, healthy food for Chris and he is amazed and glad I'm managing to cook them too!  For those that don't know Chris was the chef in our family before his diagnosis.  He is an amazing cook!  He reads recipe books and then will pull together recipes to make his own creations.  He taught himself how to make Indian food a little over a year ago.  I'm not known for my cooking and am learning this essential skill slowly but surely.  These prepped ingredients from Gourmet Prep are boosting my confidence!  

Ok my random mind just remembered that in my last entry I wasn't sure about how long I would book the hotel for.  When checking in the clerk gave me a rate of $33.30 a night for a queen bed w/kitchenette for a month.  This is a very good deal so I took it.  I have been placed on or am in the process of getting placed on housing lists for us in the event we have to stay past the end of this month. 

Chris has another lumbar puncture with chemo tomorrow.  Oh and his lumbar puncture from Tuesday came back negative for cancer in his spinal fluid!  If it comes back negative tomorrow that means he'll only have to have one lumbar puncture w/chemo per week instead of two!  

He is very fatigued but it sure is wonderful to be out of the hospital.  His counts are quite low as you can see below but cross our fingers, no fevers so far!  

We are to report at 8 a.m. tomorrow for blood counts, then IV meds around 10, and a lumbar puncture close to noon.  Houston is forecasted to get 1-2 inches of snow tonight so I'm even more thankful we are a mere 4 blocks from the hospital!

Due to the weather MD Anderson is unable to fly in it's normal supply of blood and platelets that are critical for patients and have asked for more donations.  I planned on donating anyway but now seems an especially good time so I'll be donating platelets on Sunday after I take Chris in for his IV meds in the afternoon.  

I've probably forgotten a few things I wanted to include in this update but I'm sure it's nothing crucial.  Since Chris has gotten out of the hospital and started sleeping better at night it's been so relieving!  It is still a tough road but it seems much more manageable these days and I find myself incredibly grateful for the little things in life these days.  

getting released today!!

We are at the hospital waiting for Chris to get released soon!
We're just waiting on them to get all his outpatient procedures scheduled before we can go.  His bags are packed and I picked up his meds from pharmacy a bit ago.
I left pharmacy with a large bag full of medicine and injections to give him for a mere $22.60.  I will be giving him the Neupogen injections twice a day for at least the next week or so.  These shots will boost the production of white blood cells in his bone marrow which will help prevent him from becoming neutropenic, which would likely put him back in the hospital.  He has had shots like these before but never this frequent so I'm optimistic about his ability to stay out of the hospital for a bit!
He has quite a few new or different versions of medicines he'll be taking as well.  I have a large pill container that has slots for a.m. and p.m. for two weeks worth of meds to fill up once we get checked into the hotel.
He will have to come to the hospital at least every day, sometimes several times a day, for the next 2-3 weeks.
We, and all of us, are quite excited for him to be getting out of the hospital sometime soon!
Two wonderful friends in Denver are having some pre-assembled meals delivered to our hotel!  Here is a link to the company:
http://gourmetprepmeals.com/
They have a fantastic and fresh menu and 100% of their profits to training the youths that age out of the foster care system, so they have the job skills to go forward in their lives!
Once I know our room # at the hotel I'll post the mailing address on here.

looking good

Chris started eating actual meals of food on Friday and has continued to have an appetite since then.  He has lost about 25 lbs since he has been in the hospital.  He doesn't seem disoriented at all today either!

I left the hospital around 6 Friday night and went out to eat with the family I am staying with.  I ordered a special that had seafood and ended up vomiting every two hours or so starting at midnight that night.  I rested all day Saturday in bed and didn't develop a fever at all so I'm chalking it up to food poisoning.  I stayed away from the hospital until this morning to be safe, I didn't want to expose Chris to anything.  

I posted his counts at the bottom (click to make image larger) and as you can see his counts have dipped down but are recovering already from the Neupogen injections he started getting on a daily basis yesterday.  

He is set to be discharged tomorrow and we will be back for appointments on Tuesday for chemo administered via IV (Vinicristine) and a lumbar puncture with chemo.  He is also scheduled for blood tests and an appointment with his main doctor, Dr. Thomas.  We met her the first day we came to MD Anderson and she is the best ALL doctor in the world.  

I am using the term ALL which stands for Acute Lymphoblastic Leukemia.  Chris was originally diagnosed with lymphoblastic lymphoma but it is treated exactly like ALL.  The distinction between the two is based upon the percentage of "blasts" or immature blood cells.  

Chris is now considered to have ALL.  He has not developed a new cancer.  It is just that the percentage of blasts in his blood has increased so he now technically has ALL instead of lymphoblastic lymphoma.  Again he does not have a new cancer.  I know this can be a bit confusing so feel free to ask questions if I'm not explaining it very well.

Before he gets discharged tomorrow they will give me a complete schedule of all his appointments in the next 2 weeks.  He will have appointments nearly everyday.

I had two friends (thank you Kierstin & Heather!) calling different housing options last week.  Since we don't know how long we will be here I decided to reserve a room at a hotel that is just 4 blocks from here for the next two weeks.  If I pay for a whole month up front and we leave early we won't get a refund on our money so for now we'll just play it by ear.  In the meantime my same friends are going to help me contact the charity housing places, many run by churches, that offer longer term housing for free or at a very reduced rate.  They have waiting lists but this way we can go ahead and get on the waiting list now so that if we find out in a few weeks that we have to stay longer we will be closer to have a free or reduced-rate place to stay.

I have had offers to stay at friends of friends places but Chris can't risk being around other people, he is at such a high risk of infection.  Something that would seem like a minor tickle in our throats would put him in the hospital for a week or more.  So I more than appreciate the offers, we just have to keep him isolated as much as possible.  Whenever we are in public he will have to wear a mask.

I also got in contact with a new charity called "Friday Harbour".  Actually the founder of the organization called me after someone left a comment on Chris' donation blog about them.  It's a new charity that Brian Hall founded to help people like us out, who fall thru the cracks of the system designed to help people in need.  He recently started working with an apartment complex who may be offering up some free units for people like us.  

It's all starting to seem more manageable.  Getting more sleep lately has helped a lot too, of course.  

I want to thank you all again for all of your support and kindness during this time.  

doing even better!

Chris is feeling good this afternoon and seems quite clear-headed.  We took a walk around the Leukemia Unit and looked out the windows at the view from up here on the 16th floor.  Here are some photos I took last week of the view with my phone:

After we got back to his room we sat on the couch together in front of the computer and Skyped a bit with Magnus.  It is so much fun to be able to see and talk with him over the computer when we are away from him.  We sang songs together (Science is Real and Roy G Biv by They Might Be Giants and Are You Sleeping Brother John).  He asked daddy if he likes chili peppers (yes!) and told us he likes french fries.  He was looking out the window at Chris' parents house and told us about the houses he could see and how he went trick-or-treating in his monkey costume and rang the bell and they gave him candy!  He told us about how he needed a piece of paper so he could write Santa a thank you letter and say thank you for the toys and cereal!  Chris got him those little boxes of cereal as one of his presents from Santa.

We said our goodbyes and Chris rested a bit until his lumbar puncture with chemo.  They do it in his hospital room here, it's nice not having him transported downstairs and across the building to do it.  It went fine and he is now resting on his back for the required hour.  His platelets are low (7) and so his hemoglobin (7.6) so he is getting blood and platelets transfused today.  

I'm going to leave later on to shower and change clothes and then come back to stay the night with him.  It's really really good to see him not nearly so disoriented.  

doing better

I started writing an email to my friend Emily this morning and ended up writing more than I thought so I am going to copy parts of the email here for an update.  I went to middle and high school with Emily in Manhattan KS.  We got back in touch via facebook over a year ago.  Emily's father passed away in October of 2009 from lymphoma if I remember correctly.  She has offered up many kind words and books that helped her during her father's illness.  

Now more than ever it's a day at a time.  Since he has been so disoriented I've slowed things down around him.  Minimal activity in his hospital room, I don't talk on the phone in here, use soft voices and explain things slowly.  I have to explain to him about 10 times a day where he is and why he is here.  He is doing much better yesterday and today.  For about a week he wasn't able to figure out how to use his cell phone but now he can, and he was also unable to tell time on the analogue clock on the wall but now he can read it.  Small victories.  I comfort him often and rub his back and tell him how proud I am of him and that I love him.  Since very early yesterday morning when I started doing this I've found a peace and comfort.  It is reassuring and relaxing for me and him when I rub his back and talk softly to him.  I lay in bed next to him when he asks me too.  

I think I'm going to spend a lot of time at the hospital until he starts feeling more clear.  There is a sitter in his room 24/7 to help out when needed.  He doesn't realized he is attached to an IV pole so we have to be constantly aware and careful when he wants/needs to sit or stand.  Because of the amount of chemo drugs and other meds he is receiving there are 7 different pumps running off 2 batteries on his pole, so that means two power cords connected to the wall and sometimes as many as three lines connected to the powerport catheter in his upper left chest.  

To minimize confusion and agitation when a new medical staff member comes in his room I go to his side and speak softly to him explaining who they are and what they are doing and hold his hand or touch his arm.  This has helped a lot.  It's important that I'm here at night because that is when he can become the most disoriented.  Since I stayed last night he had the best night of sleep in a week and I also was able to sleep for nearly 3 hours in a row, with some little cat naps before and after that time too.

He is having another lumbar puncture with chemo sometime late this morning so I will be here for him for that.  His last one was on Monday and he was much more aware of his surroundings then so I am hoping with me here by his side today's will go ok.  He has to lay flat for an hour after each lumbar puncture to prevent spinal fluid leakage which could lead to extremely painful spinal headaches.  This has been hard for him, he gets very restless and wants to sit up.  I think I will request the timing of some of his sedative meds be administered right before the procedure to help.

I have been staying at a friend of a friends house here in Houston since Monday night.  I never met her before and now I most definitely consider her a friend.  She has opened up her house, heart and family to me.  She is married and has a son that is nearly 3 years old.  She has a friend with two sons, one of which has been in remission from Acute Lymphoblastic Leukemia, the same as Chris' cancer, for 4 years or so now.  Even tho I am at the hospital much of the time it has been so comforting to be in their home.  Spending time around a child and a family doing "normal" things helps me see life outside of this disease and hospitals and treatment.  

I want to thank you again for your kind words and gifts of helpful reading.  There have been so many friends, family,  and strangers that have gone out of their way to help us during this time and it makes me feel less alone and helps carry the burden of dealing with this awful disease.

I hope you and your family are well and healthy.

Love,

Amanda

I've realized more last night and this morning how important it is for me to be here with Chris.  When I was gone from the hospital yesterday from noon until 9 he called probably 10 times.  It calms him down when I am here and after being with him last night I realize that I actually get more sleep when I am at the hospital with him than if I try and sleep elsewhere.  I don't have to stay in his room 24/7 - I can get out and go to other parts of the hospital for a breather.  

There is a sign his door telling anyone not to knock and to speak with his nurse before entering. When someone knocks and he is sleeping he wakes up suddenly and is very confused.  Earlier a tech came by to do his daily EKG test and did not read the sign and knocked on his door and came in without speaking to his nurse.  I stopped him and talked to him in low soft voice telling him the situation with Chris and how I would need to gently go tell Chris who was in his room and why and make sure Chris was ok with having the test done.  I did that and Chris was fine with having it done.  While the tech was getting set up Chris' nurse came in the room to hang some steriods Chris has to have with his chemo and another tech came in to prick Chris' finger to test his glucose levels.  

That is far too many people in the room and I asked all of them except the EKG tech to leave.  Chris became very agitated after the test, that many people in his room is not good for him.  I have written out instructions for all his nurses to read and all the sitters who are in the room with him to read.  One of those instructions is that only one thing can happen at a time in his room.  On a daily basis so many people come in and out of his room so it's hard to get all of them to understand and follow this simple rule that will help Chris out so much.

After the EKG when the other tech wanted to prick his finger for the glucose test Chris would not let her.  I was calmly explaining to him why he needed the test while I sat next to him and rubbed his back.  He said he didn't want it done today.  I didn't press the issue, just rubbed his back and told him what day it was and what time it was and why he is in the hospital and that he was doing a really good job.  He asked to see a picture of Magnus so I got one out of the drawer.  I had to take the pictures down from his bathroom door because they were making him too upset.  He would get up and go to use the bathroom and see the pictures and start to cry.  Yesterday he was confused about where Magnus is and why he isn't with me.  During the night when he was especially confused about where he is and why I had to tell him he was getting chemo because he has cancer, and he has had cancer for the last 6 months.  He remembered after I told him.  He asked about Magnus and I said Magnus is with your parents and he is happy and they are taking very good care of him, which made him feel better.  He then said something along the lines of that Magnus needed to be there and our fight is here in the hospital right now and I said yes, that is right.

One of the medications they hung earlier is a steroid and it may make him even more confused so I am going to stay especially close for awhile.  I've talked to him a few times today about how he has to have a spinal tap.  I am going to try and walk the halls with him before the spinal tap so he can use up some energy and maybe be more relaxed for the spinal tap.  He wants to talk to Magnus so I'm going to see about getting him on the phone after Chris rests for a bit.  I don't know if talking to Magnus will make him upset but I'd rather find out than not let him talk to him when he is missing Magnus so much.  

I haven't been in contact with many of you during the last few days.  With Chris being in the shape he is I really only have the energy to take care of him and myself so I can be here for him.  I know all of you love and care about him and want to know what is going on with him.  I will do my best to update the blog when I can but don't be alarmed if I'm not doing it as frequently.  

I know a number of you have sent packages to him but because he is so disoriented one of the things that helps keep him calm is to change nothing about his room and not introduce too many new things.  So until he is feeling better mentally I won't be showing him things or opening up any packages.  I know this may be hard to understand but right now he has to stay as calm and even as possible so he can get his chemo.  When he was really upset early Tuesday morning the needle in his powerport, which is the device in his chest that they use to administer all his chemo meds, came halfway out and it took a few hours for me to get him to allow them to access it again so the chemo meds could continue.  So for now the focus is simply keeping him calm so he can get the treatment.

Also until he starts understanding more about where he is and why, one of the psychiatrist and I decided it's best if he has no visitors after 5 or so and only has visitors when I am here.  They usually have various tests that happen in the morning so the best time for visitors at this point would be in the afternoon.  If anyone is thinking of visiting please text me first.  If you don't have my number leave me a comment and I will send it to you.  

At this point I think the earliest he will be discharged is Monday evening.  My friends Heather and Kierstin have been calling and emailing lots of places to help me figure out the best option.  Chris will need to come to MD Anderson at least twice a week for the lumbar puncture chemo.  When he is close to being discharged they will give me a schedule of his appointments.  Because of all the generous donations we have received we have enough money to pay for a month of lodging here in Houston. 

please share

Please share this link with any and everyone you think can help; we need it now more than ever.

http://chriscranecancer.blogspot.com/2011/01/donations-needed.html

chemo starting today

I will do a more complete update later but here is the bones of what is going to happen.

Dr. Verstovsek told us he will be starting an augmented version of the chemo he has already had hyper-cvad.  Augmented meaning that he will have even higher doses of the chemo.  Regular  hyper-cvad is already a high dose chemotherapy regimen.  

He will be getting it at the hospital over the next 5 days as well as the lumbar punctures with chemo today and Thursday.  They are giving me copies of the consent form that have the exact doses of the drugs and when he will be given them.  I plan on posting these later when I write a more complete update.  

He will be tested 21 days from now to see if the cancer has responded to treatment.  If it does not there are other things that can be tried; possibly bone marrow transplant and different chemo.  However the chances of the cancer responding to treatment goes down with each type of treatment that does not work.

He is confused and disoriented not because of his medication but more than likely because the cancer is in his brain.  Like I said before the test of his spinal fluid came back suspicious which they are treating as the cancer being in his brain and spine.  

Soon he is getting another lumbar puncture to get chemo and get fluid to test.  This will be repeated on Thursday.  

They are going to get a sitter to come stay with him when I or someone else can't be here since he can't be left alone.  With it spreading to his brain he sometimes doesn't know where he is and doesn't remember that he is connected to an IV pole 24/7.  

He could possibly be discharged Saturday but will need out-patient procedures done next week and the following week and then the week after that they will test him to see if it has responded.  A social worker and another hospital staff person are going to talk to me today about finding us a place to stay here and also making sure that he will be able to come back for treatment without us having to pay 20% of the bill from him being here now.  

Where we stay will have to be a place without other people since we have to do the best we can to not expose him to germs.  He will end up back in the hospital about 10 days from now for neutropenia because of the high doses of his chemo.  He can't be around children, including our son.  He can't be around anyone that may be sick or exposed to a virus of any kind.  He will need to have help from someone besides me wherever we end up being able to stay, because I can't take care of him 24/7.

I'm very overwhelmed and anxious.  I'm glad a sitter can come stay with him while he's here in the hospital.  I'm hopeful that the social worker can find us a place to stay and help figure out who can come watch him with me.  How much all this will cost and do we have the money for it I don't know.  

I have so many worries and questions right now.  I just have to stay here with him for now and wait for people to come talk to me.  

He slept better last night and has slept more this morning, more than he has in the last 5 days.  Not being able to understand what he wants and him not being able to explain what he was most of the time is really really hard.  

He forgets what is going on moment to moment and sometimes does not remember what has happened previous days.  I explain to him frequently where he is, why he is here, and why we have to stay here.  

I am thankful for

I wrote this a Wednesday night and posted in on my facebook but wanted to have it here too:

Right now I feel the need to list what I do have when my mind seems so distracted by what I don't have.

I am thankful/grateful for:

My wonderful mother and father in law.  You two have been taking care of Magnus for quite awhile now and I don't know what Chris and I would do without you.  Magnus has grown so much in your care and he is blessed to have you as grandparents.

My beautiful, hilarious, amazing, fantastic son.  You are growing so much and somehow my heart gets bigger everyday with the love I have for you.  I have learned so much having you in my life and I will strive to be the best person I can be for you.

My husband Chris.  It has been so tough lately and I am glad I can be by your side.  I will always be here for you.  You are an amazing father, my best friend, and the best cook I have ever met.  Honestly, you gotta beat this cancer crap because our son will face a lifetime of substandard meals otherwise!  Being in your life and wanting to be the best wife I can has made me look at myself in new ways and change some of my not so great habits.  My love for you and your love for me has made me a better person.  

All of the wonderful friends and family that have shown support in so many ways during this time.  I am slowly learning how to let myself ask for help and reach out; without all of the support you have shown I would be a miserable wreck at this point.  

Cancer is a miserable beast that has darkened my world; but I will not, I must not, let it envelop me.  I have no control over this disease, but I have control over myself.  

mailing address at MDACC for Chris

I've had some people ask about an address for mailing things to Chris.  I just located the address on MDACC's website and thought I'd share it here:

Christopher Hellberg

Room G1652

MD Anderson Cancer Center

PO Box 300206

Houston TX 77230-0206

some test results

Dr. Verstovsek and the rest of the leukemia team made rounds this morning and told us some of the test results.

His bone marrow has come back with blasts in it, which means there is cancer in his bone marrow.

The fluid from his spine came back suspicious and they are going to treat that as being positive for cancer until another test shows otherwise.  

Chris will have another lumbar puncture with more chemo on Monday.  They will take more spinal fluid to test it again for better results.  He will have another lumbar puncture on Thursday with chemo.  He will have lumbar punctures every Monday and Thursday with chemo until the test comes back showing the cancer is gone.  

They won't know the results of the throat lymph node biopsy until next week.  Dr. Verstovsek said by Monday they should have a chemo treatment in place to start.  They have two different courses they are thinking of.  

I of course have questions about prognosis but until tests results come back, and he starts the chemo treatment, and they can test again and find out how the cancer is responding - they will not have an answer about prognosis.  

He will be in the hospital at least another week.  

On a much needed positive note Chris is feeling much better today.  His balance and strength is much better and he doesn't need assistance every time he gets out of bed.  He even walked down the hallway with me to the family waiting room!  He is talking a lot more too.  Since half his mouth is still numb he can be a bit hard to understand at times.  Having him more mobile and able to communicate more makes me feel so much better too.  Obviously he was not happy with the news we have been getting this week. 

I really can't imagine how hard this has been for him the last week.  He's been in a new hospital with new staff and had painful procedures and given bad news about his cancer.  But he's doing better today and that's what I'm focusing on.  Just baby steps every day.  

I am going to start sleeping at the hospital or at a friend of a friend's house here in Houston, at this point it's silly to be spending money on a hotel room.  The couch that pulls out into a twin sized bed width here in his room is quite comfortable and I'm allowed to shower in his bathroom.  There are guest laundry machines on one of the floors here.  

One of our friends in Austin is coming down to help keep Chris company for a few days.  I need the break and it will do Chris some good to see a familiar face besides mine. 

Magnus has come down with a bit of a cold the past few days and I think he gave it to Grandma too, I hope they both start feeling better soon.  

I don't know how much I'll be updating over the weekend since we won't be getting any new information.  Hopefully Chris will start feeling even better to help him get prepared for the tough road ahead.  With the high-dose chemo he'll be getting he will end up neutropenic again sometime soon.  

Here are his counts for today:

another day over with

I'm a bit scatter-brained since I've been up since 3:30 but I'll try my best to give an update.

He had the bone marrow biopsy early this afternoon and it went fine.  Preliminary results are available in 24 hours and complete results in a week.

His platelets had to be 50 for the neck biopsy and when we got back to his room from the bone marrow biopsy we found out they had jumped from 8 to 50 after his transfusion this morning.  

So a few hours later they took him down for the throat biopsy and we just got back to his room a little bit ago.  Results will be back in 3-5 days (not including the weekend).  It's looking like it won't be until the end of next week that we will have results from many of these tests.  

We have been in Houston 8 days now, he has been in the hospital for 6 days.  He keeps asking to go home but I don't think that will happen anytime soon.  

Since he had sedation with both procedures he is a bit groggy.  He couldn't eat or drink anything, even water, since midnight to prepare for the tests.  Finally he can have some water but he doesn't feel like eating.  He's eaten only one regular meal of solid food in a week.  I ordered him some soup just in case I can get him to try it.  He has had nausea and vomiting off and on for the past few days.

I'm going to eat some dinner here with him, sometimes if I'm eating he'll try to eat too.  I'm hoping he has a better night tonight than he did last night.