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.  

some good news from yesterday's tests

 Chris had an echocardiogram and head CT yesterday and the Dr. just told us they both came back normal - good news!

Chris' platelets are very low today so he has to get a platelet transfusion before he can get the bone marrow and neck biopsies scheduled for today.  They are just about to start the platelets so hopefully he'll get to start the biopsies in a few hours.  

Here are his counts:

complete PET scan results info, cancer may have spread

I'm feeling a bit numb and exhausted after today so my apologies if this update is a bit disjointed.

I asked for a copy of the PET scan results and asked more questions of the Dr. that saw Chris today.  The Dr. we saw yesterday didn't tell us too much about the results.

The scan shows that the cancer is still in his throat, on the left and right side.  It also shows activity in his chest, groin region, spleen, and bone marrow.   I don't know what this means yet.  The PET scan alone is not enough to determine if cancer is in all of those places.  

He had a lumbar puncture (spinal tap) done today in his room.  They will take a sample of his spinal fluid to test for cancer as well as inject him with a chemo he has had in his spine before, called Cytarabine.  All previous spinal fluids have tested negative for cancer.  If this test is positive it means the cancer is in his spinal column and possibly brain.  I do not know when we will get these results.

When I left the hospital to come back to the hotel and do his laundry he was being taken away for a head CT.  They are concerned about what may or may not be going on inside his head since he has been extremely fatigued and disoriented these past few days.  

Tomorrow morning he is scheduled to have a bone marrow biopsy at 8:30.  He will have a biopsy of his throat/neck area tomorrow at 3 as well.  Both procedures will be done with sedation.  

Chris originally had the growth in his throat biopsied in Kansas in July.  They are doing another one because they want to know if this is the same cancer coming back or a different one.
The results from the throat/neck biopsy will not be back for 3-5 days, not including the weekend; so not until next week.
He is scheduled to get a brain MRI done on Friday.
I hope that we will get at least some results by the end of this week and some information about what the next step is.  So far when I ask when we will know what the next step is I'm told that they will maybe decide something by the end of the week, but of course it depends upon when the test results come back.

This is obviously not the news we expected coming down here.  It's been rather scary and I just hope we find out more information sooner than later.  Waiting is so hard.

I don't really know what else to say.  Sharing this news is hard.  Especially since I don't know what it means or what treatment he will be getting.  Finding out the results of the tests and knowing what course of treatment they recommend will help me move forward.  For now being stuck in this limbo is so difficult.  

some info on PET scan results

Chris didn't have any fevers last night.  His hemoglobin is down so he got two units of blood transfused today.  He has also been on a blood pressure med since it has been high yesterday and this morning.  He had an ultrasound done on his left arm this morning.

He is scheduled for his bone marrow biopsy with sedation on Thursday.  His procedures/tests had to be re-scheduled since they were set up as out patient but he is now an in-patient since he was admitted on Saturday.  The nurse practitioner in charge of scheduling is working on getting his MRI scheduled as well as an echocardiogram.  

Dr. Michael Rytting was the doctor doing rounds today that was assigned to Chris.  I googled his name before he came by and he specializes in young adult acute lymphoblastic leukemia/lymphoma.  Even tho this waiting game is hard and frustrating it is good to know that he is at the #1 cancer hospital in this country and the doctors he sees specialize in his specific disease.  

Dr. Rytting is thinking that he fevers are due to his lymphoma.  He told us that the PET scan results were in and they confirmed what we suspected, that the cancer is still there in his throat area; this obviously means he is not in remission.  Patients on the chemo regimen he is on (hyper-cvad) usually achieve remission after two rounds of chemo, Chris has had five rounds.  Since Dr. Rytting is not Chris' doctor, that is Dr. Thomas who we saw Thursday, he doesn't have many answers for us.  Dr. Thomas will hopefully be by to see us today or tomorrow.  More waiting.  Dr. Rytting did say that patients who are not in remission at this point in the hyper-cvad regimen are typically switched to another type of treatment.

Dr. Thomas will be the one who will go over the PET scan results in more detail and recommend a new course of treatment.  I am guessing that she won't be able to give us a complete picture or answer to our questions until he gets all the recommended tests done and she is able to analyze the results.  

We obviously have more questions than answers at this point and more waiting to do before any of them can be answered.  I don't know exactly what it implies or means, that his cancer is not in remission.  It is obviously not good and changes his prognosis, just how much I have no idea at this point.  We kind of already knew that the PET scan was going to reveal that the cancer had not gone away.  But having a specialist tell us that, and the fact that it is not typical for most patients with his disease getting the same chemo regimen, is entirely different.  

So many questions and nothing to do but wait.  I am thankful that we are at MD Anderson for this diagnosis and treatment recommendation.  It is such a large and wonderful facility.  His room is spacious and there is a comfortable couch that pulls out into a wider couch that I can sleep/nap on.  I realized today that I can order room service food as well.  I still have to pay for it but when I don't want to miss seeing a doctor making rounds at an unknown time it's better to order it to the room than travel from the 16th floor to the first and wind my way around the building to the cafeteria and then come back.  There is even a smaller tv mounted on the wall next to the couch for me to watch, so then I don't disturb Chris.

He is still very tired but he did finally eat solid food today!  I got him to order chicken noodle soup and macaroni and cheese.  He also got 3 scoops of rainbow sherbet and ate nearly everything.  

Hearing that his PET scan came back showing that the cancer is still there was hard for him to hear.  He's already feeling so physically exhausted so I can't imagine how disheartening hearing that news is for him.  He's ready to leave the hospital but they are not planning on discharging him any time soon, they want to get the tests done first.  I'm guessing that the earliest date he'll be discharged is Friday.  

Taking it a day at a time is often something I have to adjust myself to doing daily.

more tests

Chris spiked a fever of 103 around 6:45 last night.  He is still very fatigued and the pain in his left arm hasn't gotten any better.  

 He was a bit disoriented yesterday and at times it took him awhile to answer basic questions like what is the name of the hospital he is in; he is on a lot of medication.  They put him on a morphine drip yesterday and a pain management team came by to see him this morning while I was showering at the hotel.  They increased his dosage slightly and hopefully that will help. 

They are still waiting on the results of his PET scan.  So far nothing unusual has shown up on his chest xray's or blood cultures.  He will be getting platelets today since they are quite low.  He will be getting a shot to help counteract any reaction he might have to the platelets.  He will also have an ultrasound done on his left arm to help figure out the cause of the severe pain.  

He mostly sleeps and I try to keep quiet so he can rest and be here for him when he wakes up and needs help getting water or using the bathroom.  

When I was at the Livestrong Cancer Navigation Center in Austin last week I saw this book: http://www.amazon.com/Home-Before-Dark-Portrait-Healing/dp/140276071X and it looked quite good.  I'm about 50 pages in to it and it's hard to put down, I can identify with so many of the words/feelings/experiences in it.  An experience like this can be hard to explain to those unfamiliar with it.

I will update again with any new developments.  

saw Dr. on call

Just saw the Dr. and she said right now they don't know what is going on with him.  He hasn't had any more high fevers but he is continuing to have severe headaches, numbness on half of his lips, and today his left arm has become very painful.

The results from the PET scan are not back yet, since he had it on late Friday.  The Dr. said that the PET scan includes a CT of the head and that if anything abnormal appeared on it during the test they would need to report it, and nothing was reported.

He is still very fatigued.

He has mouth sores and no appetite.

Ordering a CT now is not necessary, it would be having something done just for the sake of doing something.  Nothing we can do but wait.

The Dr. on call is going to talk to Dr. thomas and see if the other tests ordered for him (bone marrow biopsy and brain MRI) that are scheduled for Thursday can be expedited.

So for now they are going to continue to treat him for the fever he came in for and give him antibiotics.  Unless something changes (tests results show something new or he has new symptoms/problems) they will continue giving him antibiotics and pain medication.  His blood has been taken for cultures to check for infection, so far they are negative.

fever yesterday, admitted to MDACC

MDACC = MD Anderson Cancer Center

Chris starting vomiting again around 12:30 a.m. Saturday morning, he took a nausea pill and that seemed to stop it.  He started vomiting again around 9 in the morning and had severe chills, usually a sign a fever is coming on.

He had a fever of 103.4 around 11 so we went back to the ER at MDACC.  He had blood drawn and was given antibiotics.  At about 6 p.m. we were told the ER dr. had gotten ahold of Dr. Thomas and she said to admit Chris.  At about 9 p.m. he finally got a room up on the 16th floor.  They are quite large nice rooms there.

Part of Chris' mouth has been numb since Tuesday for unknown reasons.  Because of this he has accidentally bitten the inside of his mouth when he attempted to eat on Thursday.  The bites have caused very painful sores that have prevented him from eating.  He drank some Carnation instead breakfast mix around 5 yesterday, the first thing he has eaten and kept down since Thursday morning.  He is very fatigued and has a headache that won't go away.  He is also very itchy for unknown reasons.  He was feeling better when I left last night than he was when we went into the ER.  

Because of his various symptoms they obviously want him to have a brain MRI.  Since he'll have to lay still for about 45 minutes he requires sedation for the MRI (the itching will not let him lay still for that length of time).  There is more planning/scheduling involved when sedation is needed so his brain MRI is scheduled for Thursday mid morning, after his bone marrow biopsy.  

His counts are not low, so his fevers are not due to neutropenia.  There are a lot more questions than answers at this point.  I know we are all anxious to find out more but there may not be may answers until he gets the tests done that he has scheduled for this week.  

Since his hemoglobin was low he did get two units of blood transfused overnight.  

I'm going to catch the shuttle back to the hospital as soon as I'm done with some laundry for him here at the hotel.  I didn't pack a lot of the stuff that he usually has when he has to stay at the hospital, we obviously didn't anticipate him having to be admitted while he was here in Houston.  

I will update the blog as we know more/have more tests results.

Thank you all for your support!

long day, PET scan done

Chris starting puking at midnight and it continued off and on until 7 a.m.  I checked his temperature around 9:30 and it was 101.4 so we went into the Emergency Care clinic at MD Anderson.
Thankfully his temperature went away and his blood counts didn't come back low - meaning no neutropenia.  They released him around 2:30 with a prescription for another antibiotic (he's currently on 3) and in time for us to make it to his PET scan appointment.
It's a huge complex of medical buildings here and thankfully they have a skywalk that connects the ones affiliated with MD Anderson together.  We got on a little shuttle that drove us across the skybridge to the building where the PET scan was done.
Chris has been extremely fatigued so he spent most of the day in a wheelchair.  We got back to the hotel around 5.  If he has a fever again he will have to go back to the Emergency Care Clinic and they will admit him.
Chris doesn't have another appointment until Tuesday morning but we decided to stay here rather than drive back and forth from Austin over the weekend.  The Leukemia clinic is closed on Monday in observance of Martin Luther King day.
Hopefully he doesn't get a fever and can just rest up before the tests next week.
So far his schedule is as follows (more may be added later):
Tuesday: blood draw and afternoon appointment with Dr. Thomas
Wednesday: open for now
Thursday: Bone marrow biopsy and brain MRI

So we won't be headed back to Austin for about a week.  Chris' dad's birthday is Monday and Magnus' birthday is Tuesday; we're planning to celebrate them whenever we get back into town.

It's been a long day at all new places with little sleep - Chris is already snoring and I'm going to do the same shortly.
Hopefully there won't be any more updates until Tuesday evening!

no real news yet, more tests to come

It was a long day at MD Anderson; we arrived at 9 and left close to 6.  They are a very busy facility and so our appointments were all running behind.  We had most of our appointments in the Leukemia clinic; here is a rough outline of our day:

9:00 arrival at MD Anderson

9:30 meeting with patient care specialist for new patient paperwork

10:15 nursing assessment (this was very thorough!)  

11:30 blood collection

12:00 chest xray

from about 12:30 until 3:30 Chris slept on a couch in the "quiet room" on the 2nd floor while I ate some Vietnamese soup in the cafeteria and helped one of the hospital volunteers with a large puzzle of Texas.  

It was about a 45 minute wait to see his Dr.  First we spoke with another Dr. that works with her, whose name I can't recall.  They were very thorough with all the history they took of Chris and asks lots of questions.  I updated his blood count spreadsheet below.  His counts are quite good; but he has been feeling very fatigued these last few days.  Dr. Thomas is ordering a bone marrow biopsy, PET scan, heart echo, and brain MRI.  I don't know which tests he will have tomorrow, we have to wait for the nurse to call us in the morning to let us know.  He will more than likely have some of these tests done next week as well.  We will meet with Dr. Thomas again on Tuesday afternoon.

So not much news so far, just more tests so that Dr. Thomas can get all data possible about what is going on with Chris and give us her diagnosis.  

headed for Houston

Chris and I are headed out the door for Houston; his appointment is at 9 a.m. tomorrow.  

We had a wonderful 5 days out in Georgetown with our son and Chris' mom.  Our boy sure is a jokester!  I was going to write a longer blog but I'm eager to get on the road!  

I will post a blog update tomorrow after we return to our hotel from MD Anderson.

counts for today

Chris had his counts checked today and we met with his oncologist.

Here are his counts:

Platelets are still obviously low but at least they got a little higher!  His white blood cell level going down a bit isn't a surprise either, typical after having chemotherapy.

We won't meet with his oncologist here until after we return from Houston.  We will be leaving the 12th and reporting to the Leukemia clinic on the MD Anderson campus at 9 the next day.  We will stay as long as the specialist there, Dr. Thomas, needs us to.  She will recommend a treatment to his oncologist here and we will return to Austin to have treatment here.  His oncologist here, Dr. Kampe, said that a variety of things could happen.  Dr. Thomas could recommend the same course of chemo (hyper-cvad), a new course of chemo, stopping the chemo and starting radiation, or maybe even recommending a bone marrow transplant.  We simply won't know any of this until after all the tests have been run and Dr. Thomas decides the best course of action.  

Thanks to the generous donations from friends and strangers we have gotten enough money to cover the cost of a hotel room and for food/gas while we are there.