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.  

new room

They finally had a single room open up back in 7SW (oncology) so he's back where he belongs!  And I don't have to wear a mask here so he gets to see my face and I can eat and drink in the same room with him.

And there are no restrictions on visiting hours here so I can go back to staying as long as he wants me too, woo hoo!

counts still low, blood transfusion

Chris had a fever again this morning very early and his WBC counts are still 0.3.  His hemoglobin and platelet levels have also dropped so he's been getting a blood transfusion today (2 units total).  

He is still on the antibiotics and also getting some anti-infection meds.  

Nothing to do but wait for the levels to go back up.  

update

I talked to his Dr. and he pretty much confirmed what I knew/assumed.  Chris' low white blood cell count is called "neutropenia" and is not uncommon with those undergoing treatment for blood cancers.

He needs to be isolated since the low counts mean he is at such a high risk for infection.  He is still in the CICU since they have no private rooms available on the oncology wing.  

He's getting 2 different types of antibiotics thru his IV, continuing his home meds, and also getting the daily GM-CSF shots.  

Once his counts are back up he'll be able to go back home.

Anyone who comes in his room must wear a mask and if he leaves his room he has to wear a mask.  I finally managed to place mine so that I don't fog up my glasses every time I breath, ha!

Chris in hospital for low counts

This is going to be a bit nitty gritty since it's nearly 5 a.m. and I'm exhausted.

Got home from work last night at 11 p.m. and Chris felt hot, checked his temp and it was 102.

Called his dr who said take him to the ER.

ER took blood, did an x-ray, and checked his urine.

His WBC (white blood cell count) came back very low so they admitted him and gave him two different types of antibiotics.  

Because his count is low he has to be in "reverse isolation" and has to be in his own room.

Oncology is full so he is in CICU.

The nurses there talked with his dr and got orders.  He'll be kept on the higher doses of antibiotics and get daily blood draws. 

He won't be leaving the hospital until his WBC is back up.  

He is at a high risk of infection so anyone that enters his room has to wear gloves and masks.  I can only visit between 8 a.m. and 10 p.m. 

There isn't much to do but wait and see if/when his blood count comes back up.

I am going to get some sleep and head back to the hospital in the morning.  If I miss his Dr. when he visits Chris the nurses will page him so I can talk to him.

I'll try and post more details tomorrow.

future schedule of chemotherapy and explanation

I've mentioned stuff on here before about his treatment cycle but thought I'd write out something a bit more organized for everyone.

He has 8 total cycles of chemo, each lasting 21 days.  This treatment is referred to as "Hyper-CVAD" regimen.

Schedule A is cycles 1,3,5, and 7.

Schedule B is cycles 2, 4, 6, and 8.

Here are two links that have explanations of A and B.

This one has a more general explanation:

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/Hyper-CVAD.aspx

And this one has more detail:

http://www.cancercare.on.ca/common/pages/UserFile.aspx?serverId=6&path=%2FFile+Database%2FCCO+Files%2FDrug+Formulary%2FChemo%2Fhyper-cvad-NHLhi.pdf

These drugs are administered thru his Hickman line.

He is typically in the hospital for the first 4-5 days of every cycle.  

His cycles always start on a Monday.

He also has intrathecal chemo on days 2 and 8 of every cycle.

I typically refer to it on here as his "spinal tap chemo" because that's more readily understood terminology.  

He gets Methotrexate on day 2 of each cycle and Cytarabine on day 8 of each cycle.  

These are both drugs he gets during his Schedule B treatments.  (much lower doses in his spine tho)

After every spinal tap he has to lay perfectly flat for 4 hours to prevent spinal headaches.  His very first spinal tap before treatment started (which was to check for cancer cells there, he doesn't have any) he ended up with a very very bad headache and had to get a procedure called a blood patch done to ease the pressure and get rid of the headaches.  

Schedule A he has outpatient chemo (the vincristine) on day 11 at the Cancer Center.

So basically for the first 5 days of every cycle he is in the hospital for treatment.  

He goes home for days 6 and  7(Saturday and Sunday) and goes back for his outpatient day 8 spinal tap chemo (Cytarabine).

On day 8 he also has to go to the cancer center, which is across the street from the hospital, when he is released from the hospital.

He has blood draws on days 8 and 15 of every cycle at the cancer center.  He has to get GM-CSF shots to help boost his white blood cell count depending on what his blood levels read.  

Here is a link about GM-CSF shots:

http://en.wikipedia.org/wiki/Granulocyte_macrophage_colony-stimulating_factor

This cycle, like the last one, he'll have the GM shots on days 8-13.  They make his chest hurt and give him flu-like symptoms.  

Day 15 of every cycle he also meets with his Dr and depending on the results of his blood draw that day he doesn't have to get the GM-CSF shots.  His first cycle he was off of the shots or visits to the cancer center for the remaining days, 16-21.  

Since the shots are completely dependent upon his white blood cell levels we can't predict when he will or won't have to get them in the future.

I know that's a heck of a lot of information so let me summarize a bit:

Days 1-5: Schedule A or B depending on which cycle he's on

Day 8: outpatient spinal tap chemo, blood draw, and GM-CSF shots

Days 9-21: chemo at the cancer center on Day 11(only schedule A), blood draw on day 15 and potentially daily GM-CSF shots

Today is day 8 of cycle 2 which is a Schedule B cycle, and is also day 29 of the total 168 days of this regimen.    

I hope I have clarified more than confused!  

If you have any questions please leave a comment and I will do my best to answer.

He is also taking something like 9 different types of medications on a daily or twice daily basis.  Being the organizational freak that I am, I made an excel spreadsheet of all the medications and their info so I can hand over copies to all nursing staff we encounter.  I'm also keeping a daily log of sorts so I can keep track of what days and during what cycles he has what symptoms.  That way I can easily communicate it to doctors and nurses and attempt to predict how he'll feel during future cycles.  For instance on this day of his last cycle he puked about 12 times between the hours of 6:30 p.m. and 10:30 p.m.  That is the worst day he has had so far.  We made sure he took any and all nausea meds available to him before we went to the hospital this morning and got more meds while he was there.  I've been making sure he's staying in bed since he's been home, in an attempt to ward off any ill-effects of the spinal chemo and GM-CSF shot.  

Here is also a summary of his future cycle dates:

cycle 3 (Schedule A): starts September 6th

cycle 4 (Schedule B): starts September 27th

cycle 5 (Schedule A): starts October 18th

cycle 6 (Schedule B): starts November 8th

cycle 7 (Schedule A): starts November 29th

cycle 8 (Schedule B): starts December 20th

If all goes according to plan his last outpatient spinal tap chemo will be December 27th and his last cycle will end on January 9th.  Our son turns 3 on January 18th, wow!

After he is done with this regimen he will need to be on maintenance chemo for 2-3 years.  Maintenance chemo is strictly outpatient and he is supposed to be able to resume normal activities while on it.

We mostly focus getting thru the days and not the long stretch of treatment ahead of him, otherwise it is far too easy to get overwhelmed.  

roommate moved to ICU

Chris' roommate was moved back to ICU this morning because he isn't getting better.  He isn't keeping his oxygen on like he needs to so he's been moved to where he can get more care.  

Chris and him have become friends and we hope he starts getting better - it's very hard to share a room with someone that is doing so poorly when you expected them to be gone and better the last time you saw them in the hospital.  

Jr's (the roommate) coughing was very bad and kept Chris awake at night so at least perhaps he can get some sleep today and tonight.  Hopefully he won't get someone new before he gets out tomorrow.  

surgery today for Hickman

Chris is scheduled for surgery today at 2 to get a Hickman to replace his picc line.  Here's a wiki link if you are dying of curiosity and want more info on a Hickman: http://en.wikipedia.org/wiki/Hickman_line

Chris won't be released until Friday since his last dose of one of his meds isn't until Thursday night and he'll need to have his blood levels checked the next day.  

He's doing ok, mostly very tired.  This place is not good at all for rest.  There are personnel in the room at least every hour checking him or his roommate 24 hours a day.  He'll fall asleep and then someone has to come in and give him more meds or check his vitals or do the same for his roommate.  He's tired of being here and I can't blame him one bit.

I took tonight and tomorrow night off of work in anticipation of him maybe being released but I'll go in instead and switch my FMLA requests for Friday and Saturday.  

Hopefully his levels are good enough and we won't have to come in over the weekend for WBC shots. But this type of chemo usually knocks the counts down pretty good before they get built back up so I'm counting on us making trips across town Saturday and Sunday.

He'll be back at the hospital on Monday for his outpatient LP chemo.  From check in to discharge we are usually here about 8 hours for that.  

**Edit**

It's 2:15 p.m. and his surgeon just came out to talk to me.  He said it was tough to get the line in because the veins in Chris' neck are small, maybe due to the lymphoma.  So he did it a more traditional way thru the top of his chest.  Chris is ok and I will see him once they call the desk here in the waiting room and then we'll head back up to his room.  

chemo cycle 2 of 8

We've been at the hospital for about 3 hours now. Chris will be starting cycle 2 of 8. This is his first round of the B treatment so we'll see how he'll react to it. They haven't started it yet because they don't mix it until he's here and then it takes about 4 hours to mix it. He'll need to get his picc line cleaned and redressed and an x-ray done to make sure the line is still placed to his heart. He is hoping to get the picc line taken out and a hickman placed instead while he's here. The picc line is in his upper right arm and a hickman would be in his chest.

Here's some information on what Schedule B is:

"Schedule B (cycles 2, 4, 6, 8) On the first day of treatment you will be given methotrexate continuously for 24 hours and this is repeated on the next day. Cytarabine is given twice (12 hourly) on the second day and also on the third day. You can usually go home if you are well enough and your methotrexate levels are satisfactory (this is checked with a blood test)."

He'll probably get out of the hospital on Thursday.

It's a bit of a reality check coming back here. His roommate, Jr, from his last stay here is his roommate again. Jr wasn't supposed to be here but back at home. Jr is in his 40's and has a rare cancer that I don't know the name of. He had chemo in his blood and brain. He was discharged after 9 doses of chemo in 6 days and apparently blacked out at his home not long after getting out. His dad found him the next day and he was taken by ambulance back to Wichita (he lives in Medicine Lodge I think) and was in intensive care for the last week. He came back to the oncology floor last night. He looks, quite frankly, like death. He has a knot on his head from when he blacked out and a larger bump/bubble on his head where they put chemo into his brain.

So seeing him again and in such a wretched state was an immediate reminder of the seriousness of this situation.

This cycle of hospital treatment for 3-4 days, hospital visits every day or so for the next 10 days, outpatient spinal chemo on day 7, and then no visits if he is well enough until it starts all over again makes for a bumpy ride. He'll start feeling better and we'll get used to being at home instead of the dr or hospital. Then we come back today and are confronted with the serious condition of another patient who isn't getting better. We're still trying to adjust to this new life.

6 days off

Saw the Dr today and his levels look good. He starts part B of his first round Monday morning.

Here's a link to more info about his schedule/regimen of treatment:

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/Hyper-CVAD.aspx

Basically he has 8 rounds, consisting of 4 rounds of A treatment and 4 rounds of B treatment. A and B are each 3 week cycles. He is on day 14 of his first round of A treatment.

It will be nice to have these 6 days off of trips to the CCK/Hospital!

Dr tomorrow and maybe some days off!

I've been slacking a bit on these updates so I figure I'd squeeze one in before leaving for work today.

Chris has had the shots to boost his WBC levels everyday except today and also received his first out-patient dose of a chemo called vinicristine at the cancer center this past Thursday.
His counts are looking good and they will check them again tomorrow when he'll get another shot and we have an appointment with his doctor. If they keep looking good we may have Wednesday - Sunday off of shots before he goes back in the hospital on the 16th!

He's feeling pretty good lately since it's toward the end of this first cycle of chemo. He may even venture out of the house this week to go grocery shopping or even take in a movie! 

I'll update again in a few days. I started a google calendar for his appointments so it's easier for people to know when he's having what done but for some reason it's not sending invites to people I have it set up to share with. I'll work on that more later and post a link.

Uncle Jim and Uncle Patrick and Aunt Rosie - thanks for the cards!

more chemo today

Chris was scheduled for a LP (Lumbar Puncture aka spinal tap) with chemo today. We checked in at the same hospital he left on Friday (St. Francis). There was some confusion as to whether he was having chemo or just getting spinal fluid taken so we were first taken up to the 5th floor and then moved to his old room in oncology on the 7th floor when radiology confirmed his chemo order. 
Oddly his room on the 5th floor was the same room he was in when we went there what seems like an eternity ago for his first of two biopsies to test for cancer. 
While on the 5th floor he got his picc line cleaned and re-dressed and his chest was x-rayed to make sure the line was still going into his heart.
When we got back to oncology his old roommate was still there so they got to catch up. I left the hospital around 11 so Chris could get some rest before they took him down for his LP. He forgot his phone at home so I gave him mine so he can call me once he's back in his room resting.
He will have to lay flat for 4 hours after the procedure and then we'll go across the street to the cancer center so they can take his blood to check his levels (done every Monday) and give him the belly shot to boost his white blood cell count (done everyday until he's back in the hospital in about 2 weeks).
I switched one of my days off at work so I can be at home with him tonight. When he first got home from the hospital on Friday he wasn't feeling that great but his appetite starting coming back Saturday.
I made a spreadsheet so I can keep track of when he's taken what pills (he has 6 different ones) and when his next dose is and how much food he's eating. 
He didn't get much sleep last night and the tedium of waiting and checking on orders got on his nerves this morning. Unfortunately he's got lots more of this ahead of him. 
I'll head back to the hospital soon when he calls and bring him a snack too - he isn't allowed to eat after midnight the night before his LP's so he's ravenous.