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.  

today's counts

hris went to the cancer center today for blood draw and GM shot.  I didn't go in because I'm feeling under the weather and didn't want to share my germs with other patients.  I'm sleeping in Magnus' bed until while Chris' counts are low and I'm feeling a bit froggy in the throat. 

Anyway Chris shows me his counts and they are lower than they were yesterday when he was released from the hospital so I call and talk to Dr. C's nurse Patti.  She says she is going to talk to Dr. C and that Chris definitely has to get the shots tomorrow and Saturday and he probably won't be starting his next round Monday.  We are going to talk to Dr. C tomorrow or Monday for more info.  

The numbers that matter the most are the neutrophils and absolute neutrophils.  Because his absolute neutrophils we 1.48 yesterday he was able to go home for the hospital.  I do not know why they went down so much between yesterday and today, that's something we are asking about.  

Here are some links to some info about neutrophils for those who are interested:

http://www.wisegeek.com/what-are-neutrophils.htm

http://www.medterms.com/script/main/art.asp?articlekey=20030

Even tho this dance with trying to get his neutrophils up is typical of his cancer and treatment it's pretty frustrating.  His Dr. was telling us that until the GM-CSF shots were developed about 10 years ago there was nothing they could do to help patients counts go up in between rounds and the process was much much longer.  

When he goes in tomorrow morning for his blood draw for counts and shot we will get some more answers to questions I have.  

todays counts

Counts for today are attached, waiting on the neutrophil diff. from the lab.  I tried to zoom in more on just the last few days info so hopefully it works better, let me know.

I have a scratchy throat so I'm wearing a mask to protect Chris from my germs.  He's pretty tired but feeling a bit better.  He's developed some painful mouth sores over the last few days.  

I'm heading to work about 3 to get some hours in today.  

Chris in hospital for neutropenia

Chris developed a fever late yesterday afternoon while I was at work.  We got to the ER at 6:45 and they took blood, urine, and did a chest x-ray.  His blood counts are low enough that he is neutropenic and is on IV antibiotics.

They haven't found an infection and probably won't, his body just acting like this because his counts are so low.

They finally found a private room for him on the 8th floor at nearly midnight.  8SW typically deals with diabetes and heart stuff and they have their own procedures they have to follow.  One of which was the ludicrous policy that they refused to let him drink water until his nurse was finished getting the info on her other patients since it was a shift change, then she had to get medical history from Chris, and then she had to call his dr and ask him for orders.  It was after midnight so I went ahead and got him some water myself rather than waiting any longer.

Thankfully there is a room opening up in a few hours on 7SW, the oncology wing.  It's extra difficult when we have to deal with staff who have no idea how to treat him so we will be glad to get him back to the wing he belongs on.

I'm going to try and figure out how to post the spreadsheet of his counts that I created.  It would be much easier to update that and have it visible than type it out in a note every time.  

I'll post the room he's in when we know so anyone that wants to send the online cards can.  I'm thinking that he'll be here until he's over the neutropenia and then maybe go right into round 4 chemo.  His last stay for neutropenia was 7 days and the rounds are about 5 days so he could be here for awhile.  

A not-so-great screenshot of my spreadsheet:

counts low, next round postponed

Chris' counts are still low, too low to start his next round of chemo.  So he will be getting the daily GM-CSF shots to boost his white blood cell levels all week.  They will check his blood levels again on Friday and hopefully he can start round 4 next Monday, October 4th.

Magnus left with Grandma this morning for his return to Texas.  They are going to stop and visit with Aunt Nancy and Kathy on their way thru Dallas.  And extra thank you again to them for their generous gift to us!  The truck repairs ended up costing about the exact amount, what luck!  

It was a time wonderful beyond words to have our little boy visit us for a bit.  Mary is doing such an amazing job taking care of him! 

Here is one of the photos I took of Magnus yesterday for our upcoming seasonal cards:

He looked at the pictures on my computer this morning and found the back with the hat and decorations and led me outside to re-create the "set" again.  He is far too cute.  

blood counts low

Since Chris' counts were pretty low Monday he's had daily blood draws in addition to the GM shots to boost his white blood cell levels.  They aren't as high as they need to be so Monday morning instead of checking in at the hospital for the start of round 4 we'll first have to go to the cancer center so they can draw his levels.  If they are high enough he'll go across the street to the hospital and start round 4.  If not then he'll keep getting the shots until his levels are high enough to start the next round.

Since we haven't had to deal with this situation yet I don't know exactly how things will work if his round is postponed; we'll have to wait and see.  

As they have been telling us "take it a day at a time".

When his 8 cycles of chemo are complete he will also have radiation on his chest.  That will probably start sometime in January.  It will last 3-6 weeks, length to be determined as it gets closer.  After radiation is complete he will start maintenance chemo which will last 2-3 years.  It is my understanding that maintenance chemo is outpatient and he can resume "normal" activities.  

Oh and good news, we got confirmation from his Dr earlier in the week that he is officially done with spinal tap chemo!

Our Magnus Magnet Magpie boy is heading back to Texas with grandma in a few days.  It's been a pleasure beyond description to see his happy face during this time and we'll miss him more than words can say when he goes back.  He's in great hands and has learned so much with Grandma!

update

Chris and I went to the cancer center today for an appointment with his Dr. and to have his levels checked.  Dr. appt went fine, everything is on track.  His counts are low but not too horrible, he'll be getting the GM shots everyday this week and round 4 starts Monday.

He's feeling pretty terrible right from the effects of the GM shots but should be feeling better in a little while.

Mostly we are enjoying seeing our beautiful boys face!  He is too cute for words!  

update

Chris' chemo went fine this morning - no more trips to the cancer center until Monday!  

I've been busy getting the house ready for Magnus' visit; he and grandma should be arriving any minute!  So excited!!!

Chris' old roommate died

We got up to 7SW(oncology) and they told us Chris' old roommate Jr died over the weekend.  Not much else to say.  It's a pretty typical rotten Monday.  I brought a 12 pack of ginger ale for Jr and left it there last week, he was supposed to be coming back up to 7SW from ICU.  He never got to drink any.  

They told us radiology wouldn't be ready for Chris until 1 so Pat, the coordinator for 7SW, let us go out to "lunch" in the cafeteria until then.  Basically we aren't supposed to leave but we got a stealth ok for it and we are at home and then we'll go back by 1 this afternoon for his spinal tap chemo.  

here is a link to Jr's obituary:

http://www.meaningfulfunerals.net/fh/obituaries/obituary.cfm?o_id=703228&fh_id=11366&s_id=6E4B1B3D962802EC030FF7233418EE60

spinal tap chemo

We are waiting at the cancer center for Chris to get his blood drawn so they'll know if he needs his GM shot today.  Then we'll check in at the hospital across the street for him to get his spinal tap chemo.  We usually come to the cancer center after his chemo but figured we would try it this way so he can go straight home once the hospital releases him.  It's usually about a 6-8 hour process at the hospital from check-in so hopefully we'll get home around 6 p.m. today.  

We didn't sleep very well and I was distracted this morning and forgot to make sure Chris took some nausea meds along with his normal morning meds.  So he's feeling a bit pukey as we wait; thankfully he can get some nausea meds once we get across the street.

Hopefully I can find someone today who can tell us how many more spinal tap chemo's he has or if this is his last one.  

Chris at home!

Chris is safely at home!  He is waiting for the nausea to subside and then he will attempt to eat some dinner.  It's good to have him home!  

Today his Dr. said he only has to get 6 or 8 spinal tap chemo procedures, not the 16 Chris and I thought!  So the one he is getting on Monday might be his last one!!!!

The house is santized thanks to one of Chris' wonder friends here, Sandra.  She was a caretaker for her grandparents and best friends during their battles with chemo so she knew exactly what to do!  It was beyond fantastic for her to come over to the house today and help me clean before Chris got home!  

update

He had spinal tap chemo today and it went fine.  He is nearly done with the mandatory 4 hours of laying flat time that is required after the procedure.  Good thing because he is about to chew his arm off! 

He is in room 7026 @ St. Francis if anyone wants to send an online card to him.

https://www.via-christi.org/body.cfm?id=1991

high counts and homeward bound!

hemoglobin:              8.7 (unchanged and above 8.0 is what they want to see)

platelets:                    234!  (yesterday was 153)

white blood cells:     6.3! (just 5 days ago he was only 0.3!)

neutrophils:                19! (up from 5 yesterday)

His white blood cell count is now also in "normal ranges"!  Woo hoo!  Just saw the Dr. and Chris gets to go home today!  It helps that Chris is a lot younger than most of the patients so his counts can bounce back a lot faster.

Now we just wait on his nurse, he's never had this one before.  Chris told me she came into his room about 5 minutes before I got here and tried to tell him he had radiation at 10:30 today?!  He had to say um, NO that is not me who is getting radiation lady, check your records.  On her way out she said "oh this order is for Martha not you".  Maybe she should check that before she goes into a patients room?!  

No matter we are heading home soon!

Back on Monday for start of round 3.

Wednesday's #'s are up too!

hemoglobin:              8.7 (unchanged and above 8.0 is what they want to see)

platelets:                    153!  (yesterday was 84, 153 is within normal ranges!)

white blood cells:     2.9! (yesterday was 2.1)

neutrophils:                 5 (still very low, but they were 0 for the last week)

His Dr. hasn't made rounds yet today so we don't know if he is coming home today.  I don't know, but I'm thinking his neutrophils need to get a bit higher first.  He hasn't had much energy yesterday and today.  He's been pretty nauseous and hasn't had much of an appetite.  I want him home before he has to come back on Monday but I mostly want him to feel better before he has to start chemo again.

He has been here 7 days, his longest hospital stay since this all started.  It's no fun having low counts but the private room has been wonderful.  I'm usually at the hospital for 8-12 hours a day with him, when he shares a room I don't stay as long.  

I'll update again after we see his Dr.

Tuesday's #'s are great!

hemoglobin:                    8.7 (yesterdays was 8.4) 

platelets:                          84!  (yesterday was 25)

white blood cells:           2.1! (yesterday was 0.6)

His Dr. said he might be able to go home tomorrow, it depends on if his neutrophil levels go up.  The neutrophils are the mature white blood cells that fight off infection and as of this blood draw the levels are still negligible.  

Chris isn't feeling very well today and has stayed in bed, hopefully he will perk up later.

Monday's counts

hemoglobin:                    8.4 (down 0.2 but no worries as long as it's above 8)

platelets:                          25 (up 13!)

white blood cells:           0.6 (up 0.1)

These are all good numbers and we'll get some more info when his doctor makes rounds later today.  He's perked up quite a bit last night and today!

Sunday's counts

The #'s:

hemoglobin                            8.6 (up 5)

platelets:                                12 (down 3)

white blood cells:                 0.5 (up 0.1)

I talked with his nurse and she says this neutropenia and low counts are unfortunately very typical.  He won't be getting any more blood unless his platelets go below 10.  Basically 3-4 weeks after treatment the #'s are usually at their lowest.  It's been 2 weeks since his last round so his #'s could actually get lower.  She said that he looks and acts better than most patients with their numbers that low.  Most patients don't want to eat anything or get out of bed.  He's eating decently and walks to the nurses station when he's able.  They can't predict how long it will be until his #'s get up but a conservative estimate is a week.  She said it's best to just take it a day at a time.  His regular Dr. will be making rounds in the a.m. tomorrow so I'm going to try and get here extra early so I can be sure to talk to him and ask more questions.  

He's sleeping now, if he feels up to it later I'll walk the halls with him.  He's getting "hospitalitice" aka a bit stir crazy.  I get stir crazy being here so much, I can't imagine how he feels!  Hopefully some walking will make him feel better.  

Even tho this neutropenia is all very typical its been a bit of a rough adjustment for Chris and I to get used to it.  We were planning to eat Indian food for our anniversary(like we did last year) on Tuesday - I'll just have to bring it to him if he feels up to it instead!

Later today I'm planning on writing a more organized sheet with info on all his past/present counts with dates along with what are "normal" ranges.  It will be an easy reference for all of us.  I don't know if I can attach an excel spreadsheet here on facebook but I can try!  

Oh and I don't know the details but Gary Saldivar, who is tagged in this note, and a very good friend of Chris' (he bought the fun toys for Magnus!), had a fire at his apartment complex last night.  He got out safely and him and his girlfriend had to jump from the balcony.  From what I've heard everything burned down.  Chris plans to call him later today to see how he's doing.  We're thinking about you Gary!  

link to online card and update

His WBC count is up to 0.4(was 0.3), hemoglobin is up to 7.9(was 7.6), his platelets are down tho to 17 from 30 yesterday.  He also had a low fever(100.2) very early this a.m.  He will be getting 2 more units of blood today.  He probably won't be getting out of the hospital for 5 days or so, it all depends on his levels.  

Feel free to send online cards to him if you want.  I don't think they will deliver them until Monday.  

Here is the link to the form:

https://www.via-christi.org/body.cfm?id=1991

He is in room 7023 and the facility is the hospital on North St. Francis.

I brought him a ham&cheese croissant from Bagatelle Bakery this morning (Mary&Dennis you'll remember these delicious treats!) and hopefully he'll be up to eating it once his headache goes away; he ate an english muffin with sausage and bacon earlier.  The combination of the antibiotics, GM-CSF shots, and blood he's getting leaves him tired most of the time and increases his headaches.  He's on the same pain meds here he's prescribed for home use and they seem to be working.  The antibiotics and shots also give him chest pain.  Unfortunately these are all common side effects of the treatment, including the neutropenia.