headed for Houston

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

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

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

counts for today

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

Here are his counts:

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

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

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

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.