MD Anderson appt. info and more

Chris had a pretty rough day yesterday, he had frequent nausea, vomiting, and diarrhea.  He is still having some bad stomach cramps today but the rest seems to be under control.
He got a Neulasta shot yesterday to help boost his white blood cell counts.  He went in this morning for a blood draw and here are results:

Obviously his platelets are very, very low.  If he had not had an allergic reaction to platelets in the past they would have had him get platelet transfusions at the hospital today.  If he bleeds and it won't stop then I will need to take him to the ER.  He is scheduled to see his oncologist next week.

The contact at MD Anderson called this morning and said that they want to see him on the Thursday the 13th.  They want to wait for a few weeks after his last dose of chemo (which was December 27th) before they do their tests, that way they will be able to tell if the chemo is working or not.  He would be scheduled to start round 6 of chemo on the 14th, more than likely he will start his next round when we get back from Houston.  He will be getting treatment at their Leukemia clinic and be seen by a doctor that specializes in acute leukemias.  Chris technically has lymphoblastic lymphoma but their really is no medical distinction between it and lymphoblastic leukemia, hence him being seen by an acute leukemia specialist.  

They said to expect to stay there for 3-5 days, it could be more or it could also be less.  The first day we get there he will have a nurse assessment going over the 7 page medical history that we are going to fill out and bring with us.  He will have labs, a chest xray, and a bone marrow biopsy test.  We will meet with Dr. Deborah Thomas, the leukemia specialist, that afternoon after all his tests.  That is all we know so far about what we will be doing at MD Anderson.  

Since we aren't leaving next week I will have more time to look into where it would be best for us to stay.  We have had offers to stay with friends or friends of friends but it may be easier to stay at one of the hotels that offers medical discounts to MD Anderson patients as well as free shuttles to and from the facilities.  There is also a hotel associated with MD Anderson right across the street but it may cost $30 or so dollars more a night than other places we could stay.  I'd rather not attempt to navigate downtown Houston and find parking at their large facility everyday.  They do have valet parking but it is only free the first day, every subsequent day it costs $15.  

Our son's 3rd birthday is the 18th of January.  We hope that we will be back in the area to celebrate with him but if this process has taught us anything it's that we really can't plan on anything from day to day. 

no chemo on Monday (vincristine day 11 of cycle 5)

Chris' oncologist is having him forego the outpatient low dose chemo he typically gets on day 11 of the odd numbered cycles.  This is so he can get to MD Anderson quicker.  I spoke with our contact at MD Anderson and let her know, she said we should know by tomorrow when we will need to be in Houston.  I'm guessing we will need to be there Monday morning.  

Chris was scheduled to get a shot to help boost his counts at the cancer center this morning but we are seeing if he can come in later today instead.  Neither of us slept much last night because he had nausea, severe stomach cramps, and diarrhea throughout the night.  He was puking this morning and does not have the energy to get dressed and get out of bed to go into the cancer center.  I'm waiting to hear back from them about what time we can go in later today.

coming home today and some MD Anderson info

Chris should be getting released within the hour.  His oncologist, Dr. Kampe, saw him around 7 this morning and said he could go home.  The hospitals policy is that one of their internal medicine doctors have to release Chris so we had to wait nearly 5 hours for that to happen.  Chris slept most of the morning and the delay gave me time to clean and sanitize the house.

Chris will probably be going into the cancer center tomorrow for a shot to boost his white blood cell levels.  

A person from MD Anderson called me this morning to discuss a consultation with them.  Here is some information I learned:

- The initial consultation will be 3-5 days and all outpatient tests/procedures.  This means we will need to arrange our own lodging and transportation to and from the facilities in downtown Houston.

- They can't do the consultation while he is getting chemotherapy so they will try to make him an appointment between the 3rd (when he will be getting outpatient chemo at the cancer center) and the 14th (when round 6 would be due to begin).

- Chris only has Medicare insurance.  He receives Medicare insurance because of his medical disability from his brain injury.  Medicare will cover 80% of the costs for MD Anderson.  We will be billed for the initial 3-5 day consultation.  However, before he would be able to receive any additional care from MD Anderson we would have to pay the 20% of that initial consultation bill.  The odds of us being able to pay 20% of a bill up front are slim to none - these procedures and tests cost thousands and thousands of dollars.  

I will be asking for more information about his financial options.  As of now the best option seems to be that he gets the consultation from MD Anderson and then any recommendations they have could be carried out thru Texas Oncology here in Austin.  

- The next step is to wait for the contact person at MD Anderson to call us back with the appointment date.  Whatever the date may be there is always a possibility Chris will be back in the hospital with neutropenia and it would have to be rescheduled.  

Here are Chris counts from the past few days:

screenshots of medical appt calendar since july

These are screenshots of some of the medical appontments and hospital stays I have kept track of on my iCalendar.  

doing better

First here are Chris' counts for the last few days:

He hasn't had fevers for a few days and the mass in his neck seems smaller as well.  It's been a rough few days because he has been on a lot of meds in addition to the chemo he's getting.  Because of all the meds he has been frequently disoriented and had trouble communicating.  He had a head CT done on Christmas Eve to make sure there wasn't anything going on there that was causing him to be so disoriented; it came back all clear.  

He had some pretty bad hiccups last night and the medication they gave him caused him to be even more confused.  He woke up in the middle of the night and had no idea where he was and accidentally ripped the IV in his arm out.

He felt much better today and could think much clearer but he is still pretty exhausted.  He will hopefully be getting out of the hospital on Tuesday.  His platelet levels starting out pretty low before this round began so they will need to keep an eye on them.

starting chemo today

Chris was moved to room 261 yesterday and will be starting chemo later today.  He has had some fevers today and nausea with vomiting.  The oncologist on call just came by and she repeated that she thinks the fevers are due to the lymphoma since his white blood counts are not low.  His red blood cells are a bit low today so he probably be getting blood transfusions tomorrow.  I'm writing this on Chris' computer so I don't have access to the spreadsheet to update his counts to show on here.  

He is feeling pretty terrible today and didn't get much sleep last night.  I'm going to head out soon and spend the night in Georgetown with Mary and Magnus and come back tomorrow to spend the rest of Christmas with Chris in the hospital.  

hopefully chemo tomorrow, Christmas eve

The oncologist on call just came in and talked to Chris; she is putting in orders for him to start chemo.  His counts look good (see below) and all the cultures have come back negative for any infection so he is clear to start his next round of chemo.  He is still having sporadic fevers but they believe those are from the mass growing in his throat/chest area.  So hopefully sometime tonight/tomorrow morning he will get moved to 2C, the floor where they administer chemo.
Counts (I don't have today's yet):

no fevers today

Chris hasn't had any fevers last night or today so he may be able to start round 5 as early as tomorrow.  He will have to get moved to the 2nd floor to start chemo.  Nothing to do but wait and see when he can start, I will update when we know more or if anything changes.

ER last night for fever

Chris went to the ER last night for a fever.  He had the usual work-up: chest xray, blood tests, urine tests.  His blood counts were pretty much what they were yesterday morning.  He is still having fevers off & on, more than likely a result of being around Magnus when he was sick over the weekend.

Chris will stay in the hospital and start Round 5 of chemo when his fevers subside.  He is currently in room 429.  Today he just wants to try and sleep since he was up most of the night, he didn't get a room until 5 this morning.  Obviously his PET scan scheduled for today had to be canceled.  

PET scan tomorrow, maybe round 5 Wednesday, mass in throat has come back

First here are Chris' counts from today:

He is going in tomorrow morning for a PET scan.  He may be going in Wednesday morning for round 5, we won't know until tomorrow afternoon or Wednesday morning for sure.

Last week Chris felt the growth in his throat coming back.  This is the original cancerous mass that was biopsied to diagnosis his disease.  After his first round of chemo it went away.  Chris had different scans done about 2 months ago when he was in the hospital for extended neutropenia and they didn't detect any significant amount of the original mass.

It has started to grow back aggressively and it is painful, makes swallowing difficult, and has started to effect the way his voice sounds at times.

Because of this his Dr. is having the nurse contact MD Anderson (the cancer hospital in Houston) for a consultation.  Because of the holiday we probably won't hear anything from them for 2 weeks or so.  The nurse is going to send Chris' medical info to them and they will contact us to let us know if we need to travel to Houston for a consultation.

MD Anderson is a highly respected cancer treatment center.  click here for more information about them

It is rather scary and serious that his mass is coming back.  I am glad that his Dr. is reaching out to MD Anderson to make sure that there isn't any additional treatment besides what he is already getting.  For now we can just continue on the current course and he will go in for his next round of chemo as soon as possible.

I'm sure many of you have lots of questions, I sure do; but now there really aren't many answers.

platelets still too low

Here are Chris' counts from today:

We will go back Monday to have counts checked again to see if he can start round 5 then.  

platelets still low

Here are his results from today's lab:

His platelets are up to 55 from 13 but they need to be at least 80 to start chemo.  They are getting better tho!  We will go back Wednesday morning to have his counts checked again.  

Unfortunately these delays due to low counts are "normal" and to be expected.  

not starting round 5, platelets still low

We went to the Cancer Center around 8:15 this morning to have his blood checked to see if he could start Round 5 today.

Here are the results:

His platelets are still critically low so he will not be starting chemo today.  His platelets need to be at least 80 before he can start chemo.  They were going to have him go into the hospital today for some platelet transfusions but when I reminded them that he had an allergic reaction that they attributed to the platelets he had transfused last week (which put him in the ICU) it was decided that he won't get platelets.

Since his platelets are so low he obviously needs to take it easy, no strenuous activity.  If he starts bleeding and it won't stop we have to take him to the ER at which time he would get platelets transfused.

This is the first time his platelets have failed to go back to normal ranges, usually it has been his WBC levels that stayed low.  

We will go back to the Cancer Center Monday morning to have more blood work to see if his counts have gone up enough.  

In other news we met with his doctor Monday afternoon to talk with him about future treatment and remission questions.  With Chris' type of cancer (lymphoblastic lymphoma) and treatment regimen (hyper-cvad) he has very high odds(92%) of going into initial complete remission.  

Sometime in the next few weeks Chris will be getting a PET scan to determine if he is already is remission.  Depending upon what the scan shows he may only need to complete 6 rounds of chemo instead of 8.  He will need to have radiation treatments after he completes the chemo.  We don't know yet how long those radiation treatments will be, altho I think it would be around a month.  It all depends upon what levels of the cancer they are able to detect in his body after the chemo treatments.

After radiation he will need maintenance chemo for at least a year.  This consists of weekly blood labs, oral doses of chemo, and weekly IV doses of chemo.  He would see his doctor about once a month.  He would be tested every 2-4 months for any re-occurrence of his cancer.  He has about a 40% - 50% chance of staying in remission.  

Despite his frequent neutropenia and sluggish platelet counts I am feeling much better about seeing an end to this intense chemo treatment.  These last 5 months or so have been difficult and it has been hard to see past this time when cancer and chemo is the center of our lives.  

There is a leukemia/lymphoma support group in Austin that meets once a month; I went to my first meeting last night.  I found it very helpful and plan to continue attending.

Chris is at home

Chris was released around noon and is sleeping at home.  He will have labs Thursday morning at the cancer center to determine if he can be admitted to the hospital that day for round 5.  So he has about 2 days before being in the hospital for 5 days of chemo.
I'm quite exhausted so this is a short update.  He is tired but better than he was days ago.  I will post again after I get all the things on my list done and get some sleep.
This hospital stay has been particularly rough and we are both quite drained.

getting released

I am at the hospital with Chris waiting for him to get released in an hour or so.  As the spreadsheet shows below all his counts look better except his platelets which are still very low.

He did not end up getting more blood transfusions yesterday.  The oncologist on call wanted to hold off since they don't know if the transfusions caused the allergic reaction.  He got a shot to boost his red blood cell production (for hemoglobin & platelets) late last night.

Chris is scheduled to start round 5 in 3 days, on Thursday.

more transfusions

This mornings counts:

As you can see everything is up but platelets and hemoglobin.  He will be getting more blood transfusions today.  

He is attempting to sleep in today so I am headed out to Georgetown to spend some time with Magnus.  

counts are up, moving to PICU

So far the only info I have for Chris today are his counts that he texted me this morning.  He also told me there are orders to move him to PICU.  

Our truck was driver's side window was broken and the GPS was stolen out of it so I'm waiting for the window to get fixed before I can go to the hospital.  The bag that Chris normally has in his hospital room with him but was in the truck since there isn't much room in a ICU room for stuff did NOT get taken and for that I am very relieved.  It had some of Chris' sketchbooks and Magnus' baby book so I would have been very very upset if that had been taken.  Windows can be replaced and GPS systems aren't a necessity.  

At any rate here are his counts:

today's counts

Here are the counts from today:

While his platelets and hemoglobin have gone down slightly it is not a significant enough amount to cause concern.  As long as his HGB stays about 8 he does not need more transfusions.  If his counts keep along this path he will be able to go back to a normal room tomorrow.

His counts seem to be recovering much more quickly than the first time he was neutropenic.  

I believe he will be getting his blood drawn tomorrow around 8 a.m. so not to long after that we should know if he will be released to a regular floor.

He is very alert and talkative, we played a few round of gin rummy today and he won every time!  I went out to dinner with our friend Paul and we brought Chris back some non-hospital food that he seemed to enjoy.

staying in ICU one more day

Chris is doing much better but they want to keep him in ICU another day just in case he needs another transfusion tomorrow since they don't know if that is the cause of his allergic reaction.

I will post another update later when I get his blood draw results from today.

looking better

When I visited Chris this evening he was looking much better!  He even ate a full dinner too!

The nurses and oncologist on call that visited while I was there said that maybe he'll be able to go back to a regular floor and get out of the ICU tomorrow, that would be good!

They still aren't sure exactly what caused the allergic reaction but are surmising it may have something to do with the platelets so next time he gets transfusions they are going to have it come from a single donor as a precaution.

The hematoma went away and a Dr. was able to access his port using fluoroscopy, so no more multiple IV's in his right arm!  

Here are the results of his CBC today while in ICU:

His WBC, platelets and neutrophils are still pretty low but his hemoglobin is much better so he won't have to get any more blood transfusions for now.

transferred to ICU

I'm just going to do this post in a timeline format starting with last night.

I left the hospital at about 11:30 last night.  He had finished his 3 unit of blood and was on antibiotics.  The charge nurse attempted to access his powerport and it looked promising.  After I got home Chris texted and let me know they were able to finally use his powerport to get/give blood and antibiotics.  I spoke with his nurse before I went to sleep and because his hemoglobin was still low he was going to get 2 more units of blood.

When I woke up this morning Chris had texted me a picture of him with blood all over his shirt.  Apparently at about 3 a.m. the powerport starting bleeding due to a hematoma so they had to take the needle out and stop using it.  

I got here at about 9 this morning and noticed that he had very puffy eyes and he was having problems breathing thru his nose and was coughing up lots of phlegm as well as blowing it out of his nose.

I called his nurse and she checked him over and took some vitals.  He first got 2 IV doses of benadryl but that didn't seem to help and we noticed he was developing hives over most of his body he was given doses of steroids and an oxygen mask.

The floor doctor, Dr. Anderson, came in to see him and after his hives didn't go away 30 minutes later the decision was made to transfer him to ICU where he can get more attention since the nurses there have less patients. 

He will be getting regular doses of steroids and he also received an epinephrine shot.  

In the middle of writing this he was moved to his room in ICU.  I am now at home since he needs to get some sleep.  

He has another unit of blood to get but first they are going to do some tests to get rid of the hematoma.  He was already looking much better when he got down to ICU.  His eyes were much less puffy and the hives are almost all gone.  They don't know the origin of his allergic reaction since it did not occur immediately following any medication.  Figuring some of this out will take some time.  

I will update more later when I am able to go see him during visiting hours and he has had a chance to rest.  They ask that visitors turn off their phones before going into the ICU area.  

visitors info

I forgot to mention information for anyone who may want to visit Chris during this hospital stay.

He probably won't be up to visitors today, maybe tomorrow.

The precautions for visitors to take are as follows:

- no visitors that are sick or have been exposed to someone that is sick (for instance if either of our roommates get sick I can't come visit Chris)

- no children

- everyone must wear a mask before entering his room and wash hands before entering and leaving his room

(there is a hand sanitizer on the wall to the left of his room door and masks available on the wall to the right)

- no fresh fruit or veggies

- no flowers or plants

There is a sign on his door stating this info and asking all visitors first check in at the nurses station.

Chris has also had a pretty bad headache since before we came to the ER and so far none of the meds (vicodin & morphine) are giving him much relief.  When he was neutropenic in the past he also suffered from pretty bad headaches.

scans, transfusions, and antibiotics oh my!

I may be a bit slap-happy with my odd hours of sleep since last night so bear with me.

He is now situated in room 366, it's large and agreeable so far.  His nurse is still getting all the info on him so there will probably be some activity in and out for awhile.

He has had 2 units of blood transfused so far, one more to go.  He also will be getting platelets.  

They did a head CT on him earlier today to make sure there is no internal bleeding, a concern since his platelets are so low.

Two nurses in the ER last night tried to access his powerport with 3 different needles but were unable to.  The powerport was what he had inserted on the 18th.  It is a way for them to be able to give him chemo, antibiotics, etc without having to continually hook him up to IV's.  For whatever reason they can't access it so he's had an IV in his arm.  Around 3 a.m. they attempted to get another IV going in his right arm (he can't have any IV's in his left arm due to his brain injury) but after trying 3 different sites they couldn't do that either.  A few hours ago they were able to access another vein in his right arm so he has two IV's there now.  At some point today they are supposed to attempt to figure out how to access the powerport so he doesn't have to have all these IV's in his arm which make sleeping very difficult.  

He is napping right now.

I don't know how long he will be in the hospital, I am guessing at least a week.  If you look at the past entries on here to August 26th to September 2nd that is the time when he was neutropenic from this same round of chemo before.  This is called the "B" round of his hyper-cvad chemo regimen and is typically the toughest on his body due to the high doses of methotrexate.

His oncologist, Dr. Kampe, came in to see him this morning and said that his low counts are obviously a concern but it also indicates that the chemo drugs are working.

So in addition to the blood and platelets he is getting IV antibiotics, continuing his home meds, and a shot to help boost the production of white blood cells.  

He will be getting blood draws daily to check his counts which I will update on here as I get them.

Chris admitted to hospital for pancytopenia

I took Chris to the ER at about 11 p.m. last night for a fever of 101.3.  He had been feeling pretty terrible all day.  

The staff in the ER moved pretty quickly and the dr. ordered CT scan of his belly, chest xray, blood counts, and urine test.  At about 1:30 a.m. they told him his blood counts and that he would be admitted and need blood transfused.  There are no beds available on 2 central so he is sleeping in an ER room tonight.  

Here are his counts:

Obviously his counts are all very low.  He is also on antibiotics in addition to the blood to get his platelets and counts back up.  His condition is called "pancytopenia" and is basically neutropenia with also having low platelet and hemoglobin levels.  This is the lowest his platelets and hemoglobin have ever been.  Unfortunately this is what the chemo drug, methotrexate, does to his system.  The very first time he had neutropenia was after this type of chemo and it's not altogether surprising.  The B cycle of his chemo regimen, the high dose methotrexate, is the toughest on his system.  

I'm going to get some sleep and head back tomorrow, I will post more updates as more information is available.  

feeling good

We had a wonderful few days at Chris' parents house for the holidays.  Lots of good time with Magnus and Mary took some pictures for the holiday card so this time we will all be in the photo!  

Chris has been feeling really good lately, the best actually that I have ever seen him after he's had chemo.  I realized the other day that this is the first round that he hasn't had 2 doses of chemo in his spine, so perhaps that can account for part of him feeling so much better than normal.  He has bouts of nausea but his meds are helping keep it at bay.  

lab today and shot

Chris had a blood draw today to check his counts.  He got a shot to support the production of white blood cells.  The shot is called Pegfilgrastim and is longer lasting than the daily shots he had to get in Kansas.  So he won't have to go to the cancer center nearly everyday in between treatments!
We will go in next Wednesday to have his counts checked as well.  He has his next Dr. appointment on the 6th.
As long as Chris feels up to it we will be heading to his parents house today for Thanksgiving.  I'm really looking forward to being with his parents and Magnus for the holiday!

Chris home from round 4

Chris got home a bit ago from the hospital!  His Dr. came to see him at 5:30 this morning and said his counts today are excellent and that he has done well with this round.  (I asked for a copy of his counts but they didn't have the ability to print them out for me at the nurses station so I will get a copy from his doctor.  However his nurse did tell us his WBC was over 8, very high for him!!)  Chris will have his blood counts checked Wednesday and we will meet with his doctor as well.

Chris is back on all the anti-fungal, antibiotics, and anti-mouth sore meds as well.  He had a dose of IV Zofran (nausea medication) right before he left today.

I went over all the infection precautions with his nurse and she recommended he wear a mask when he is in public.  If Chris feels well enough we plan to go to his parents for Thanksgiving.  He will need to wear a mask when we are there since Magnus, like all kids, are germ donkeys.  Perhaps we will draw a festive mustache on it, ha!

I fed him and he will probably go to sleep soon since he didn't get much sleep last night at the hospital.  

He will be at risk for neutropenia about a week from now, when the main chemo drug he was given (methotrexate) reaches it's "nadir".    

Click here to a link for more information about nadir and chemotherapy.

I'm glad he is home from the hospital!  We are starting to get used to all our new surroundings.  I finally went grocery shopping for the first here time this morning.  

Chris might come home tomorrow

The Dr. doing rounds yesterday told Chris he may get to come home tomorrow!  His oncologist will be there tomorrow to let us know for sure.  

To prepare I removed the plant from our room, sanitized the surfaces in the house, and washed the bedding.  I also got an air purifier for extra filtering clean fun since we are living in a new place and our roommates have a dog.  One of Chris' nurses also recommended that we dry our hands with paper towels at home instead of using a towel that every one uses.  

Chris felt pretty terrible from the chemo yesterday and vomited about 10 times over a span of  4 hours.  His nurse contacted the Dr. and they changed up his nausea medications to more frequent and higher doses.  He felt much better today!  

He has had visitors everyday since he's been in and various friends have also brought him food.  The hospital food there isn't that great and he can't order any food after 7 p.m.  It's so great to have family and friends around!!  

better days

It's Saturday morning and Chris really likes the nurse he has today.  She is a chemo nurse.  The way it works is that if a chemo nurse is on duty they get assigned to Chris.  If a chemo nurse is not on duty he gets a regular nurse who has no knowledge of chemo drugs.  

It's very different than what we are used to but we're adjusting.  The chemo nurses he has had so far have been very competent.  The first chemo nurse he had Thursday night, Sarah, was absolutely wonderful.  She works chemo patients on this floor and is also a nurse manager for the floor above us. 

Barbara is Chris' chemo nurse today and I have not met her yet but Chris said she is awesome too.  She used to work at a very well known cancer center in Houston called MD Anderson.  

We are slowly but surely getting into the swing of things here and it's been good to have more friends and family around to visit Chris and remind me that I can ask them for help.  

I'm not very good at asking people for help but I'm trying to learn.  

Thanks everyone for your support!

Round 4 of chemo starting tonight

Chris' doctor came by earlier and so did Chris' chemo nurse.  He'll be starting chemo up in the next hour or so, they just started his anti-nausea meds.  He'll have chemo until Sunday night or later depending upon how things go.  He will get out by Wednesday at the latest, hopefully.

There was some confusion with his orders for having his home meds continued, like his pain meds, so it took way too long to get him pain meds.  He is really sore from his surgery.

I contacted his oncologists nurse and cleared up the home meds confusion but it still took forever for his nurse or the pharmacy to get the meds ordered.  

It's nearing shift change so hopefully his next nurse won't be so busy.  

He's eating dinner and not too long ago some of his friends(Mel, Rhiannon, & Paul) came to visit, it's good to be where he has people visit.  Our awesome friend Sandra was the only one who came to see him when we lived in Wichita.  

We're slowly getting used to things here and we'll have plenty of time to do so.  

resting in his room

Chris got to his room about an hour ago and I have his stuff all set up for him.  He's a bit disoriented from the surgery but doing fine.  

He is in room 264 and it's in a general wing of sorts.  Since the South Austin Medical Center is a smaller hospital there is no oncology wing.  He has a nurse but she is not a chemo nurse, we have to wait to see her until maybe 5 p.m. or so.  

It's a new hospital and new staff and new things to get used to and figure out.  All the rooms on this wing are private rooms tho so that's nice!  

There is no online card service for this network of hospitals tho.  

We don't know if he will start chemo tonight or tomorrow.  They are understaffed on this floor today so things seem a bit busy.  

Right now we are really missing the nurses on 7SW!

out of surgery

He got out of surgery at 11 and I spoke with his surgeon.  He said it was a bit tough getting it in but it went well and Chris talked to them about food and his favorite restaurants during the surgery.

He is in a recovery room now and then should be going up to oncology from there.  Hopefully I get to see him soon!

CBC looks good, he is in surgery now

Chris was taken to surgery at about 9:45 this morning.

They said it should take about an hour to insert the portacath but I'm guessing it will be longer because they had problems trying to get into his veins when he had his Hickman put in.  It will be nice with a portacath because he won't have to bandage up and clean the site every time he showers.

After surgery they'll take him to a recovery room and then up to oncology.  We don't know yet if he will start chemo today or tomorrow.  He will be here I am guessing at least 5 days.

Since it's a new hospital and staff we just have to wait and see how they do things here.

He had his blood drawn yesterday and his counts are the best they have been since early August.

(click image to view it larger)

Here is a photo of him before surgery:

I will update more later.

surgery and round 4

Chris will be getting some blood work done tomorrow to make sure his levels are ok for surgery on Thursday morning.  He'll get the portacath put in and then also start round 4 that same day.  

Since we'll be at the hospital anyway for his registration and blood work tomorrow we will see about taking a tour of the oncology department to see what it looks like.

New nurses to get used to and back to the chemo grind very soon!  We hope the nurses at his new hospital are as good as the ones he had in Wichita!

consultation w/surgeon went fine

We met with the surgeon Chris' oncologist referred us to.  He talked to us about the procedure to have a portacath inserted and the risks involved (same risks as with the Hickman Chris had).  His scheduler should call us tomorrow and let us know when Chris will be going in to have it placed, I imagine it will be Wednesday or Thursday.
We don't know yet when Chris will start his 4th round, maybe the same day his portacath is placed or later depending upon when the hospital has a place for him.  The surgeon's office is one floor up from his oncologists office and we stopped by the oncologists after his appointment today to ask the nurse a question.  A woman in the waiting room heard that Dr. Kampe is Chris' oncologist and she said he is the best doctor she's ever had and she's been going to him for 13 years.  So we continue to hear nothing but wonderful things about Dr. Kampe! 
I'll post something as soon as we know any of this info. 

first Dr.'s appt went well!

First off the South Austin Cancer Center is a much newer facility than the one we went to in Kansas.  We waited a mere 10 minutes before we saw his Dr. and there was also a sign at the front desk that read "please let us know if you have been waiting 15 minutes past your scheduled time".  The office we saw the Dr. in was very spacious and displayed his many medical certificates and degrees.  

This is compared to waiting up to 2 hours to see his previous Dr. and the office being about a third of the size of the one we were in today.

His new Dr., Dr. Kampe, talked to us for at least an hour - he's great!  He went over all the previous information and had extensive notes from reading Chris' medical file that had been faxed over.  He answered all of our questions and was extremely personable and helpful.  

The plan is for Chris to consult with a surgeon on Monday to get a portacath put in, which is how they give him chemo.  He previously had a Hickman but that was taken out nearly a month ago because they thought it might be a source of infection.  He will probably start his 4th round of chemo by Monday the 22nd.

We've had a long break from chemo treatments and it will be rough getting back in the groove so to speak. His facial and head hair has grown back and that will all fall out again.  

It has been so wonderful to spend this time with Magnus and we will probably stay with his parents until he has to go into the hospital for his next round so we can spend as much time with him as possible. 

Chris' maternal grandmother has been having some increased health problems and it is crucial for his mom to travel to El Paso to take care of things.  I'm even more glad that we are down here now so she doesn't have the added stress of being the exclusive caregiver for Magnus during this time with her mother.  

There's probably more I'm leaving out but it has been nice to have a bit of a break from using the internet lately!  

Dr.'s appt changed to Wednesday

For whatever reason his new Dr's office called today and his first appointment will be on Wednesday late morning instead of tomorrow afternoon. 
The truck with our stuff arrives tomorrow so we can get most of it into storage and our room set up before his appointment the next day.
It's been beyond wonderful to have this time with Magnus. 
Chris is looking and feeling pretty good, altho all the recent activity is starting to catch up to him. 

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.