Saturday, January 22, 2011

Reminding Myself

Today I "met" a new friend whose one year old has recently been diagnosed with T-Cell ALL.  Her words were mine a year and a half ago...fear, shock, panic...She 'friended' me,  and I responded with my own words...calm, reassurance, take one day at a time and even "lucky'!  I was reminded how far we have come and how we really do not have the terrible times anymore.  I was honest and shared that I still have fears and panic moments...but our children do have the "lucky' of the most curable, and with one of the least toxic therapies.  (Sammy has to have a stronger, more toxic treatment because he is high-risk, but it is still much 'kinder' than many other protocols.) 

Reading back to older posts, one can see the vast battery of chemo drugs we pumped into our little boy.  Now, on Maintenance, things steadily improved. Here is where we are at right now.



Sammy's  leukemia remained in remission after induction and consolidation, so maintenance therapy was able to begin. Most treatment plans use methotrexate and 6-mercaptopurine, given as pills, often along with vincristine, which is given intravenously, and a steroid (prednisone or dexamethasone). These latter 2 drugs are given for brief periods every four to eight weeks.  Sammy has the methotrexate given to him intravenously instead of in pill form, and the steroid pulse is, unfortunately, every three weeks not four to eight weeks.
During the first few months of maintenance, most treatments include 1 or 2 repeat intensified treatments similar to the initial induction. These 4-week intensifications are called re-induction.  Sammy did not have this.
Occasionally, leukemia patients at higher risk may receive more intensive maintenance chemotherapy and intrathecal therapy.Sammy may well more intense...but as I don't see other childrens' protocols, I don't know if there is a big difference.

The total duration of therapy (induction, consolidation, and maintenance) for most ALL treatment plans is 2 to 3 years. Because boys are at higher risk for relapse than girls, many doctors favor giving them several more months of treatment.Yet Sammy is scheduled to come off treatment in October 2011, just two years after reaching remission.  I know this worked for Peter...but I am a little nervous.  I have been told it is because his body will have reached the maximum doses he can have. 

Sammy is now off neurontin and we do see his movement has been impacted; he has stiffer legs and looks a little more unstable.  We have decided to try physical activity to strengthen his muscles, rather than chemicals...especially as he does not seem to be in pain from it.  

So, this week (week three) is amazingly easy.  No steroids (we have those to look forward to next week), and no mercaptopurine as this is his week off.  He had his methotrexate intravenously at the clinic and so the only meds we have to give is the antibiotic for the Staph infection.  Can you believe it...normal, everyday antibiotics are the ONLY oral meds this week.....we have come a long way, and I believe my new friend's baby will reach this stage day at a time.  Much love to them both. xxx


  1. You truly are an inspiration. xo, S

  2. It is a long haul but it will be over this year!

  3. Having support is so essential through all of this.


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