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.