31 January, 2011

1/31/11 Home from Clinic

Robert and I fared well on our own today.  I even managed to return 50% of Kasie's calls and texts, no small feat if you understand the numbers involved.  I believe that AT&T surely had to task  us  our own Satellite for the day. National security may have had to suffer, by my wife knew up to the minute what was going on with her boy.

The Chemo itself went without event, as did the lumbar puncture (spinal tap).  We do however have one interesting development.  It appears that Robert has contracted a virus that is giving him a hard time.  Nothing that is terribly serious, but cause enough for concern.  He presents as having a bad cold, with a hacking cough.  With most kids, you'd suffer through it and wait it out, slowly improving.  But with an impaired immune system, that is on a downward trend, it's a bigger deal.  Fortunately Robert's counts have not yet hit Nadir.  Though his numbers are dropping, and will likely bottom out this week, they are hanging on a few days longer than expected.  Hopefully the benefit of these few extra days with some white blood cell function will help get him through this.  We are monitoring his temperature and obvious lung function.  An unfavorable development of either will result in a hospital trip.  To enlighten you on the odds of this, I'll share with you what an Oncology Nurse told me today.  When leaving the clinic for the day I told the Nurse "see you next week", she relied "Oh I'm pretty sure I'll see you boys earlier than that.".

All that aside, Robert is happy, comfortable, and laughing a lot.  He appears to be no more than a tired little boy with a bad cold, most would be none the wiser. My Son has an amazing spirit and a sharp mind.  Two attributes that are not easily bested by anyone or anything.  To hell with Cancer.




30 January, 2011

1/30/11

We are packing things up, and readying ourselves for a long day at the hospital tomorrow.  I will take Robert, this will be the first time that only one of us goes along.  Kasie feels conflicted about staying behind, but we just need to get used to it, as we won't both be able to go every time.  I am concerned over a cough that Robert has.  I know that his counts are extremely low, hopefully whatever bug he has isn't cause enough for him to be admitted.  I will update tomorrow evening.

27 January, 2011

Things have settled here. Robert's fever hasn't returned, so we've managed to steer clear of the hospital for a few days. We are a few days from his counts hitting Nadir, which means rock bottom. He will be at a high risk of infection for a long time. We will have to be very careful. It's hard to tell people who are nice enough to drop things by the house that they can't come in, but that's just the way it is. It's about minimizing exposure. And Monday's happenings certainly drove home the point of how serious even the smallest colds can become.

25 January, 2011

1/25

Robert seems to be doing better today, however everyone is exhausted from last night.  We have had permission to give him Tylenol up through midnight tonight.  At that point we have to stop and see if his fever returns.  If it does we will have to return to the hospital.  The early results of last nights cultures are promising, hopefully there are no serious infections.

After a day of procedures and chemo yesterday in clinic, we started his additional home treatments today.  I give him an additional daily injection for 3 days after each clinic, and a new oral therapy before bed.  The pill is nasty and surely straight poison.  After his initial dose last night he was sick within 30 minutes.  We are trying to give it on an empty stomach before bed, to limit the effects.

All is quiet now, hopefully it will stay that way for a restful night.

1/24-25 Quick Update

We've made it home. As of now the cause of the fever is unknown. Not from a lack of possibilities, but rather the opposite. Could be any one of several factors. They treated what they could, took cultures to examine, and deemed us fit enough to go home. When this same situation arises with lower counts, we will have to stay.

1/24/11 Starting Over

The results of last week's blood test, showed a "slow" response of the chromosomes to chemotherapy.  This is one of 5 markers that contribute to risk group assignment.  The issue is relapse.  ALL Leukemia has an 80% + survival rate of the first occurence.  The numbers are not quite so gracious for the second time around.  This makes relapse prevention the major objective.  This is why even under the best possible scenarios, a kid will be in remission after a month but will receive chemotherapy for 3 yrs. 

Since Robert's chromosomes have responded slower than desired, he has been assigned to the high risk treatment group.  He is still doing fairly well.  There are hardly any traces of cancerous cells in his body, and his marrow is producing healthy blood.  However, since he has this one negative point, we have to take every possible step to reduce the likelihood of this disease returning.

So what does this mean for us...
Today was supposed to be the first treatment of our previously designed consolidation phase.  Scheduled to be the first step in ramping down treatments, and a stepping stone to maintenance therapy.  However, now we are taking a different road.  We are adding 10 months of more intensive chemotherapy, that is designed for those within the afforementioned higher risk group.  This will entail stronger drugs, more treatment at home in between clinic visits, and a likely decline in quality of life during this period.  He could be alot sicker than he has been, and it will not be an easy ride.  Also his ANC will be low for almost the entire 10 months.  This will affect his ability to get visitors, and leave the house to see others.  He's tough, and we're dedicated to recovery, so we will prevail.







After a spending all day in clinic, we were home for about 2 hours when Robert developed an escalating fever.  It eventually hit 101 deg, which is the mark given us for a required trip to the hospital. A fever is a big deal for a child in such a weakend state, with a compromised immune system.  Therefore any significant fever will mean a trip to Atlanta Childrens'.   That is where we are now, in the hospital for a course of preventative measures.  

23 January, 2011

1/23/11 Camping

After a couple hours of playing our  Cabela's hunting game on the Wii last night, we decided to set up deer camp in the living room.  Complete with a tent, some popcorn, and a campfire.  The excitement was just more than Ben could bear, and he crashed 10 minutes after we made camp.





 Robert has been in quite a bit of pain lately.  Since coming off of the steroids, his body is going through a sort of withdrawal.  We return to clinic tomorrow for a big day.  Robert will get another spinal tap, and we will discuss the specifics of the next course of treatment. 

21 January, 2011

1/21/11 Steroids

Some of the effects 30 days of chemo and steroids have had on my boy. This affects me terribly, far more than it should.  In the larger scheme, it is only a stepping stone,  but it's hard seeing him this way.  That smile keeps me going.

1/21/11 Mixed Results

Mixed Results...


We received some of the anticipated test results today.  Some of the news was good, some could be better.  The good news is that there were currently no cancerous cells found in the bone marrow, and Robert could be close to remission!  (see 1/6/11 post on remission)  However, results indicating how the treatment has impacted the blood, have cause Robert to be assigned to a higher risk (of recurrence) category.  Instead of moving on to the consolidation phase of treatment, we will begin again with a different chemotherapy protocol.  I will not receive the specifics until Monday.

18 January, 2011

1/18/11

Our clinic visit went well today, but we are now in a holding pattern.  Today was the last scheduled treatment of the induction phase.  A spinal tap and a bone marrow aspirate was taken to determine how Robert's body has reacted to treatment, and to assign him to the appropriate risk category.  If the results return favorable, we will move on to the consolidation phase of treatment.  That would consist of a new chemo medicine, and possibly less trips to the hospital.  If the results are not as we hope, then we will basically start over again.  His blood labs looked great today.  He is producing platelets and healthy white blood cells for sure.  This good news provides a momentum of hope, preparing us to hear only the best regarding the test results.


One of the improved lab results was a high ANC (see earlier post).  This indicates that his immune system is strengthening for the moment.  This is the first time that his ANC has trended up since the beginning, and it's a welcome site.  Now it will yo-yo up and down, dictating Robert's rules for exposure to others.

He is done with a month long cycle of steroids, which has caused Robert to swell to about 3 times his normal size, I am glad to see them go.  A little less hair everyday, and some sore bones, but he's hanging in there.  He is complaining of a bad headache tonight, which is a side effect of the spinal procedure.  After dinner some pain meds will help ease this and coax him to sleep.

16 January, 2011

1/16/11

All is well after a relaxing weekend.  This weeks chemo will be delayed until Tuesday, due to the clinic being closed 4 days last week.  I am glad that were able to get Robert's treatment on Monday.  We are alone for the first time since coming home from the hospital.  I am back to working a full schedule, and we are figuring out our new routines.   I will update after chemo on Tuesday.

15 January, 2011

1/15/11

I am a modern gal who knows how important it is to accessorize, but appreciates the importance of a good value.  Only 5 bucks for this fashionable wristband that goes with everything in my closet???...WHAT A DEAL!

12 January, 2011

1/12 PM

Things are going well.  Robert is tired all of the time, its hard to get him to do much of anything.  I get him outside for some fresh air on the rare occasion, but he's generally disinterested.  Right now the most prevalent issue is his swelling from the steroids.  You can't see it very well in the photo below, but he doesn't look like himself.  His stomach is so greatly distended that some of his shirts won't even cover it. On the condition his bathroom trips remain frequent, the doctors showed no concern over this and say it's acceptable.  However, it is hard to see him like this in this condition.  Another two weeks of the steroid and this should begin to subside.  It's selfish really, he is comfortable and happy and for that I am grateful.  Its just that last week we could occasionally forget that there was anything wrong with him, and that's just not possible right now.


1/12 AM-2

I think if given the choice, Ben would live outside with the dogs.

1/12 AM

Our recent source of entertainment. That's solid ice.

10 January, 2011

1/10/11

North Ga is all but shut down today due to the weather.  After a two hour drive over unplowed highways, we arrived at the clinic on time.  However a sign on the door informed us that the clinic was closed due to inclement weather, and to call back tomorrow.  Kasie and I had no interest in wasting this trip, so we made a few calls and pestered enough people that they came up with a way for Robert to get his chemo today.  All went well, the blood work came back with no blasts, and some improving numbers.  Doc said that his swelling is within the expected range for the steroid, and will continue for another couple weeks.  Once home we went out in the snow for a few minutes until Robert got tired. 

Freezing rain tonight...
If I only had some bread and milk (just kidding)

09 January, 2011

1/9/11 PM

As the weekend is winding down, we are gearing up for chemotherapy day tomorrow.  We have a very early appointment, and will have to leave extra early due to the weather forecast.  They are predicting snow and ice in Ga, so surely complete and utter mayhem will ensue.  85 will likely be illuminated by police lights and the incessant blinking of hazard flashers all along the ditches.  There will undoubtedly be some sort of double super winter apocalypse warning issued by the local news, as they beat the issue like a drum for the next 24 hrs.  As we speak, grocery stores are jamb packed with folks hurrying to get their extra rations of milk and bread to help weather the impending doom.  The usual requisite pleasantries cast aside for a veritable Kroger cage match. What in the world do they do with all of that bread and milk anyway?  If you were truly fearful for your ability to leave the house and do battle with this evil yankee blight, would you not prefer sundries of a more sustentative value?   The schools here in Hall county are already closed for tomorrow, on the mere expectation of snowfall.   What I would have given for this line of thought while growing up Southwest of Pittsburgh.

All kidding aside, tomorrow's clinic schedule has no additional procedures.  So if all is well, it should be our quickest treatment yet.  Robert doesn't quite look like himself right now.  His cheeks are so swollen/bloated that they are making his eyes squint a little.  The severity of his distended stomach alarms me.   We were told to expect a certain amount of this, and have even previously experienced it while in the hospital, but certainly not to this degree. Also his skin is almost translucent, you can see his veins in many parts of his body.  I'm glad we have clinic tomorrow,  that he can get a good once over.  Had we not, I would have likely hauled him in anyway.  More tomorrow after clinic.

06 January, 2011

1/6/11 AM

Everything is going well here.  Robert is still acting lethargic and  looking a bit swollen, but is comfortable.  As the chemotherapy has killed a very large percentage of the Lymphoblasts, he is no longer having any bone pain, which is good news.  Lymphoblast is a term used to describe immature white blood cells in the bone marrow and blood, these cells multiply greatly and do not fight infection.  In a normally functioning environment, these cells for the most part mature properly prior to entering the blood stream. When the numbers of these immature cells increase greatly, swelling inside the bone results in the pain he was experiencing, and damages the normal cells.  In this circumstance many of these immature cells are released into the blood, and are monitored on a Blood Count as "blasts".  The lower the blast count, the better.  A low blast count is a harbinger of the body's cessation of immature cell production.  Robert's blast counts are very low, which is great news as it suggests effective chemotherapy.  If this trend continues, we could expect remission very soon. Neutrophils are the primary infection fighting part of the healthy white blood cell.  A multiplier created from the percentage of segs and bands, which are subsets of Neutrophils, is applied to the white blood count to determine the ANC.  This Absolute Neutrophil Count is the best method for determining the body's ability to fight off infection.  An ANC of less than 1000 is an immune deficiency.  Less than 500 tells of a severe risk for infection.  Robert's is currently around 200,  which is why we can't allow visitors at this time.  

Now, a note about remission, a term which is commonly misunderstood.  Many folks are shocked to hear that remission is imminent, as they believe that word to indicate the end of the road.  Don't get me wrong, it will be wonderful news, and another huge step towards recovery!  However, remission does not mean that the patient is cured.  Remission in our circumstance means that as a result of the treatment, the cancerous cells are no longer found in the bone marrow, and the blood counts return to normal.  As we near the end of the Induction phase of chemotherapy, this will hopefully be the case.  After remission the priority shifts to preventing the cancer from returning, which is why the chemo continues.  Each patient is assigned a risk factor of low, standard, or high risk of recurrence.  As of now, Robert is in the standard risk category.  The next phase of chemotherapy is the Consolidation phase.  The length of this phase has yet to be determined, but is often between 6 to 8 months.  The purpose of the consolidation phase is to reduce the numbers of cancerous cells left in the body.  After consolidation, the final phase will be maintenance.    This will likely take us to the three year mark of treatment.  And the end of this segment, is when folks start throwing around beautiful words such as CURED.

03 January, 2011

1/3/11

Another successful chemo clinic today-  And by successful I mean that his blood counts were in the expected ranges, nothing went wrong, and they let us come home.  Pretty simple clinic today medically speaking, however a little drawn out with the other aspects.  We met with a woman who assists with getting schools ready to fulfill their obligations.  We also met with a woman who assists with getting us ready to fulfill our financial obligations.  And then we met with a counselor, who checked on our mental well being, but really just seemed to be gauging if we were beating on each other in the process of coping with all of the above.  My wife insinuates that I was less than cooperative with the latter of the three, but I find that hard to believe.    

I find my comfort with this situation in facts and information.  I read books on Hematology and Blood Cancers, track his blood counts, trend the numbers, and immerse myself in any good non-human source I can find.  Kasie seems to find more comfort in talking with people, or reading and hearing the accounts whom have gone this way before.  The many folks involved in this process who are trained in different aspects of counseling work great with Robert and Kasie. However I just find myself closing off from it,  I'm not sure why.  In the picture below, one of the Child Life Technicians are working to distract Robert while a nurse pierces his skin to access his port-a-cath.  I cant say enough about how great they are with him.



02 January, 2011

1/2/11 PM

Nothing fun going on today.  Robert is doing well, having a few side effects but comfortable.  We are cleaning and disinfecting this afternoon, now that's some quality family time.  Chemo day tomorrow, so we are getting geared up for our trip to Atlanta.  I'll update afterward.

01 January, 2011

1/1/11 Saturday AM

Morning finds us with a new day, a new year, and a new beginning in our new kind of normal.  Like most of you, my wife and I find ourselves reminiscing on the previous year, as well as looking ahead and setting goals for moving forward. It seems absolutely amazing what we thought were problems only a few short weeks ago.  Some of our biggest concerns of 2010 seem so insignificant now.   Bundled with our new concerns and worries, comes a small by comparison, but nonetheless positive attribute.  And that is a certain clarity of purpose, and re-prioritization of what is truly important.  Those of you who know me, know that I am no sort of a smiles and sunshine, glass half full optimist.  I proudly defend my pessimistic views under the flag of realism.  However, being now overwhelmed with enough negativity that none additional is required on my part, this positive side effect of our situation stands clear.  I encourage all of my friends to hit the reset button on reality this year.  Look up from the grindstone to see life, and the opportunities that you may be missing.  Enjoy with fervor every easy day, as they are fleeting.  We are grateful for many things and many people.  Don't get me wrong, we still have our share of non Cancer related problems.   But from our current point of view, its just too damned hard to give a rip about them right now.

Happy New Year