25 January, 2011


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.