counts are better and scan clear!

His counts are getting better and the scan of his abdomen came back normal!  As long as his levels don't start declining again he should be clear to start round 4 after we meet with his new Dr.  

Chris will continue with the prednisone.  His Hickman was taken out a few weeks ago when he was in the hospital and it may have been the cause of his recurrent fevers, he hasn't had any fevers since.  He'll have to get another PICC or Hickman line put in before he starts chemo again.  

The move is less than 6 days away and I am so ready to see Magnus!!!

CAT scan and move

His scan yesterday went fine, he got to enjoy a tasty orange flavored barium drink.  We'll meet with his Dr. Friday morning to go over the results.

It's been a nice break in hospital stays and Dr.'s visits lately.  We are mostly enjoying the fall weather and slowly but surely packing up the house.  

One of Chris' friends in Austin has a friend, who used to work at the Texas Oncology location we will be going to, says his new Dr. is the best in the Austin area!  I have heard so many great things about Dr. Kampe and am looking forward to our first appointment with him on the 9th.

The movers are loading up our stuff on November 4th and we are planning on heading towards Texas that day.  

I can't wait to see Magnus!  He has figured out how to use Skype all by himself and calls us at will throughout the day to say hello and tell us about playing golf in the backyard.

test negative! and more info

His bone marrow was negative for cancer in both his right and left hip samples.  Good news!  These were the results his Dr. predicted but wanted to be sure.  

He scheduled a abdominal CAT scan for Chris on Monday.  This scan will rule out the possibility that Chris' spleen is enlarged which could account for his low blood counts.  Dr. Cannon doubts his spleen is enlarged and wants to rule it out.

Dr. Cannon thinks he might have something called ITP.  Here is a link for more info about ITP  His Dr. said it is a very common auto immune disease and he sees patients with it every week.  It could be why his blood counts aren't recovering.  There is no specific test for it, it's something that is diagnosed when all other possible reasons have been ruled out.  At any rate Chris will start taking prednisone today to see if it helps.

His next appointment with Dr. Cannon is next Friday.  He'll go over the results of the CAT scan and have a blood draw to see if the prednisone is helping.  

Some more good news is that the scan Chris had done on his chest when he was in the hospital showed no signs of the original mass, which means the chemo cycles so far have worked to get rid of it.  This does not mean he is cancer free, it just means the mass is no longer visible on a chest scan.  He still needs to complete the regimen (8 cycles and radiation).  

Hopefully the prednisone works and after meeting with his new Dr. in Texas he can start round 4.  

home from test

The test went fine and he is at home sleeping.  We will meet with his Dr. when the test comes back to determine the next step.

waiting in admissions for bone marrow test

We are waiting in admissions to get checked in for his bone marrow test.  The actual procedure will be fairly short.  Chris is getting some anesthesia this time so it's not quite so painful.  

We should be back home around 10 at the latest and hopefully know some results in the next 2-3 days.  I do not know what the next step will be if his test is negative or if his test is positive.

All we can do is wait for the results and go from there.  

He should have started his 4th round of chemo 3 weeks ago.

blood count spreadsheets

Here are three screenshots of all Chris' blood counts I have recorded.  If you click on the image it shows up much larger.

archive complete

I have cut&pasted all the relevant notes from facebook onto here and will be deleting them from facebook. This blog should work much better I think!
I will need to figure out another way to share his counts since the format they are saved in now can't be uploaded here.
Well the "search" feature I had added at the top does not work because the blog is not public, I'll look at other blog gadgets for alternatives.

blog for updates

From now on I will post Chris' medical updates on here.  When I get around to it I will probably cut&paste my past updates from facebook to this site as well.

no chemo, bone marrow test tomorrow

Chris' counts are not high enough for him to start his 4th cycle of chemo today.  He should have started the 4th round 3 weeks ago.  During Chris' stay in the hospital over the last 3 weeks he's had a number of tests to determine why his counts are not recovering like they should.  None of the tests have shown any reason for this.  

Today his Dr. said that the next step is to have another bone marrow test done on his right hip (2 previous ones have been on left hip bone).  His Dr. wants to make sure the last tests were accurate.  It is possible, but rare, that he could have spotty occurrence of cancer in another part of his marrow.  So he will have the test done to make sure.

We'll report to the hospital very early tomorrow morning and hopefully know results by the end of the week.

I am thinking of creating a blog to relay Chris' medical information instead of doing it on facebook.  I can make a blog viewable by only those I chose and it's far easier to search thru previous posts.  

I've tried to go back and find particular notes I've written on here and it's a bit of a headache.  I can have a search option on a blog that would make finding posts much easier.

he gets to come home after all!

Just talked to Chris and he can come home for the weekend after all!  I'll go pick him up in a few hours when all the paperwork is done.  He'll get his blood levels checked Monday morning to see if he can start round 4.   His Hickman was taken out today and showed no signs of infections.  Let's hope he doesn't get a fever before Monday and have to go back!

not getting out today

Looks like he won't be getting out today. So far his tests are all negative but his dr. told him this morning they may take out his Hickman to make sure there isn't any infection.

I'll be visiting him more tonight and hopefully find out more.

I'm hanging out at home today and tomorrow while I attempt to sell some unused items at a garage sale.

quick update

His counts from last night show that he is not neutropenic, his neutrophil count is the best it has been in over a month.  He has not had a fever since he has been at the hospital last night.  If his blood cultures come back negative for infection we are speculating that maybe, maybe they will let him come home.  Hopefully anyway!
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Chris gets out today!

Chris just talked to his doctor and his counts are high enough to come home!  He has been there nearly 2 weeks so he is anxious to get the heck outta there!

He has no appointments until Friday when they will check his blood to see if he's clear to start round 4 on Monday.

move to Texas

I thought I'd post on here about our plans to move to Austin.  We want to move there to be closer to friends and family and because of various factors the sooner we get there the better.

So I looked on the Texas Oncology website and searched for doctors in the Austin area.  I focused on those in the south Austin area since that is where we will be staying.  Dr. Kampe was my first choice because of the fact that he has a M.D. AND a Ph.D. and he works out of the south Austin cancer center.  When I googled his name I found glowing patient reviews!  Here is his profile:

http://www.texasoncology.com/doctors/Carsten_Kampe/

We talked to Chris' current doctor about us moving and he wasn't much help as far as references go, he said he didn't know anyone.  

So I cold-called Texas Oncology and spoke to a woman with new patient services and before I could mention Dr. Kampe's name she said that's who she recommends!  She has worked for Texas Oncology for 10 years and said if she was sick she would go to him, that he is just as kind to his staff as he is with his patients, that he is very detail oriented and takes the time to explain things and answer questions!

I've talked to Dr. Kampe's new patient staff and we are going to tentatively set up a first appointment in early November.

The only thing that will prevent us from making the appointment is if Chris has to be hospitalized here in Wichita for neutropenia around our move date.  So for now we can just plan for the move and then deal with what happens if he's in the hospital during that time.

I'm excited to have found him an excellent doctor that will be just down the street a mile or so from where we are staying. 

We are really really looking forward to being closer to friends and family and of course our son Magnus.

I've told Chris that he didn't have to get cancer to get me to move to Texas and start cooking more!

counts up again!

Here are pictures of today's counts and a photo I took of him last night as well.  He was trying desperately not to laugh while I prodded him to pucker his lips like a model.
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today's counts are up!

A quick note before I head to the hospital for a few hours before work.

The numbers are good today!  The only counts that are down are his hemoglobin and platelets so he'll be getting some blood today. 

BUT his WBC count is the highest it's been in 3 weeks!  And his absolute neutrophils are getting higher instead of lower like they have been!  

His Dr. made a joke yesterday about having the nurses raise his bed up when they take his blood, to get his levels higher, ha!

All good news and hopefully his counts will continue to climb!

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no new cancer!

His Dr. came by while I was visiting tonight and his test came back negative for any cancer in his bone marrow!  It is very relieving to know that his cancer has not spread to other parts of his body.  That would have been a whole new awful ballgame.

His Dr. thinks that his body is just having a tougher time recovering from this round of chemo.  The infection he tests positive before in his blood was a false positive due to skin contaminant.  Chris isn't on any drugs that could be interfering with his production of white blood cells.  So nothing to do but wait for his counts to come up.  

bone marrow test completed

Chris just completed his very painful bone marrow test.  Hopefully we will get some results on Friday and go from there.  His counts are still not improved so hopefully his test results will shed some light.

There isn't much else to report.  He has been eating a bit more lately so that is good.  

I'm sure most of you have seen the blog I've made but here is the link again, please share it with anyone you think can help:

http://chriscranecancer.blogspot.com/

bone marrow test tomorrow

I just got off the phone with Chris' nurse, he is sleeping.  He had a rough night with tummy problems and a low fever (100.4).  His mouth sores have been pretty bad the last few days so he hasn't been eating much.

His counts are still not up, he is getting a bone marrow test tomorrow.  The nurse told me it takes about 2 days to get results from the test, so they should know by Friday.

I'm going to go visit him after he wakes up.  

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today's counts

I just got off the phone with Chris' nurse with his counts for today.  So far they aren't showing much improvement but he has not had a fever in the last 24 hours.  She explained to me that sometimes the antibiotics that neutropenic patients need to be on to prevent infection don't help them produce new white blood cells.  I was looking at this counts when he was neutropenic last month and they didn't get better for nearly 8 days.

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In the spreadsheet above from last month you can see his levels were much lower than they are now but they recovered after awhile.  This is why his Dr. is not planning any tests for a few more days to give his counts a chance to come up.  

His nurse also said it would be ok for me to come visit him for awhile, wearing a mask of course.  He's been pretty lonely all weekend.  I am planning on visiting him and then heading to a clinic to make sure I don't have a throat infection like I did last season.  I don't have a sore throat anymore but I'm still a bit congested so I want to make sure.

His counts for today and yesterday:

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Oh and I know not all of you can be on facebook right when I post these and some of you don't have access to facebook at work.  If anything serious ever occurs I won't be using facebook to communicate but calls/texts instead.

possible bone marrow test soon

Chris' counts aren't getting better and he will be getting a blood transfusion later today.  He had one last time he was neutropenic.  

He talked to his Dr who told him that he has neutropenic fever since he gets fevers every 4-6 hours.  His doctor is concerned that his white blood cell counts are not recovering like they should.  He is going to wait a few days and see if the antibiotics will help and if there is no change Chris will be getting a bone marrow test done.  White blood cells are produced in the bone marrow so if his counts aren't getting better one explanation is that the cancer has spread to his marrow, the test will find that out. 

I am dropping by the hospital in a little while with some more clothes and items for Chris.  Since I am still congested it isn't wise for me to visit with him.  

I attached a screenshot with info for his counts.

neutropenia is back

Chris had a fever of 101.8 around 3:30 p.m.  Called Dr.'s office and talked to his nurse who talked to his doctor who said take him to admissions at the hospital.

So we are now in room 7033 awaiting blood draws to grow cultures to check for infection and IV antibiotics and nausea meds.  He has the shakey chills and is pretty nauseous.  That's basically all the news for now.

His last chemo was the 13th of this month so it's been about 16 days.  It's typical for blood counts to drop around this time after chemo.  But it's maybe no to typical for his counts to not be increasing very much since he's been getting the GM-CSF shots almost daily for 2 weeks.  Hopefully we will get some more information/answers tonight and tomorrow.  

The cycle pretty much goes like this:

days 1-5 he gets tons of chemo inpatient at the hospital

days 6-21 he gets GM-CSF shots daily dependent upon his blood levels so they can get high enough for the next round

The chemo kills the healthy and cancerous blood cells which is why they always dip down and have to climb back up.  The low blood levels make him at high-risk for infection.  So far he has only been neutropenic (low blood levels) and hasn't had any infection.

update

Blood cultures are still negative for infection.  He is feeling pretty terrible and his fever spiked at 104.4 around 8:30 last night but was down to 98.2 around 11 p.m.  He is getting the antibiotics and lortab to help with the fevers.  His fever went up and down all night and seems to be settling down a bit today.  

His nurses and Dr. say this is all typical of his blood cancer and treatment but it's not feeling very reassuring.  At this point we can just wait for the daily GM shots and the antibiotics to do their job and get his levels up, taking it day by day.

It's probably more frustrating this time because I'm feeling slightly under the weather.  So I'm not spending as much time with him at the hospital and am always wearing a mask around him and constantly washing my hands and trying not to touch things that he touches.  

When he's neutropenic kissing is risky and especially with me feeling a bit sick it's a no-no.  When he gets chemo we also aren't allowed to exchange kisses since he's toxic.  So no kissing my husband for the last week and not anytime soon since once his levels are back up he'll hopefully start his next round of chemo.  

When I asked his dr. the other day about precautions at home he said just to blow him kisses and gave me a wonderfully hilarious demonstration.  His Dr. is a bit strange but we enjoy it, his attempts at humor are lovely.

Anyway he said to me "this is how my daughters showed me" he puts up one of his arms into a pageant wave stance and says "elbow elbow wrist wrist touch the pearls and blow a kiss" complete with the matching moments.  He then offered up a variation "shed a tear and blow a kiss" also with the moments.  It was hilarious and I wish I had it on video so share.  

Chris did an impression of him once that had his nurses laughing.  His Dr. is known for his utterings of "uhmm uhmm uhmm, yes, yes uh uh, mmmm"  repeat.  

Since Chris was up most of the night he asked me to visit a bit later so he can get some extra sleep.  So I'll be heading his way shortly and then work later this afternoon.

contact info for 7SW and update

I only spent about 2 hours with Chris at the hospital today because I'm still feeling sick.  Even tho I want to be there and he wants me to be there it isn't wise with his counts so low.  I don't know if I have a little cold or bug but I stayed home from work to rest and slept for a few hours once I got home.  It's very frustrated to feel sick and not be by Chris' side.

At any rate before I fell asleep Chris called and told me his nurse told him one of his blood cultures came back positive for infection.  So they are increasing his antibiotics to help treat the infection that is in his central line.  Infections, along with the low blood counts, are common and it's nothing they are alarmed about and they know how to treat it.  Chris is feeling pretty concerned and lonely making it even worse that I'm at home and not with him.  I've encouraged him to ask more questions from his nurse to reassure him.  He's still feeling physically pretty yucky but better than he was yesterday.

I couldn't remember if I had shared the contact info for the nurses station or not so I have it listed below.

The phone # to the nurses station 7SW  (316) 268-5793 and Chris' password is Lily.  Shift change is at 7 a.m. and 7 p.m. so the hour after that isn't a good time to call for information.  

All of you are also listed on his HIPAA forms as well.  If there are ever any questions I can't answer or anything like that please feel free to call and ask to talk to his nurse.  

I'm hoping I start feeling better so I can go visit him tomorrow, if I'm not feeling better it probably isn't wise for me to go there.  

Even tho we are told and I've read that all these low levels and even infections are normal it's a bit scary.  Chris' roommate that died passed out at his house and was taken by ambulance to the hospital, his low blood levels made him vulnerable and he developed pneumonia which he died from.  So when Chris' levels get low and he has fevers and now this infection it really scares him.  

Even tho I get scared too I try not show him and reassure him the best I can.