Wednesday, June 2, 2010

Downs and Ups

For the past month things have been less than easy.  Sammy's physical abilities have been under close scrutiny: neurontin for neuropathy...not really helping movement but maybe taking away some of the pain, weekly check-ins by the CHAM doctors to see how his walk is doing...progressively getting worse! and finally, being scheduled for OT and PT at Greenwich Hospital with D.J and Heather.  Finally...something that indicates the possibility of progress.

In addition to our worries about walking and the 'claw-like' positioning of his hands, Sammy has also begun evaluations through Stamford Schools.  Hart school has scheduled a series of evaluations, cognitive, physical and emotional, so as to develop a special educational plan for him.  We cannot get this through the school district he attends (where we work) as he is not a resident of the town...but they will provide the services once Stamford has evaluated him for needs, and agrees to cover the cost. 

A major issue right now is the question of whether or not Sammy will stay in Kindergarten next year.  his academic ability indicates that he is ready for first grade, but his lack of stamina in the classroom could mean more missed school next year and thus, missed first grade instruction which is crucial to future academic development.  What makes the decision so hard is that we have no idea how Sammy will respond to the maintenance phase of treatment: he may become much more able to take part in all classroom activities and receive all instruction, but he may not.

But...the great news is that Sam is almost at the point of beginning Maintenance!!!!  He is done with the agonizing asparaginase shots and should be on slightly reduced steroids for each cycle.  He will have to be accessed every week from now on  (until at least Oct 2011) for his weekly methotrexate dose and will have LP's every 18 weeks.  The usual daily meds will continue and the mercaptapurine has actually been increased again as his counts remained too high over the last few weeks.  The aim of maintenance is to fully blast away all remaining leukemia cells which remain undetected in the body.  It lasts 70 weeks and is generally considered to be the easiest part of treatment.  Some children remain very agitated by the steroids and the vincristine can still cause pain and neuropathy, but in general, many children start to feel more like their old selves. 

Sammy has been though the toughest of all week ones this last cycle..he was in so much pain, felt so unable to move, and was emotional distraught, even telling me he wanted to just give up and let the cancer win!  My heart broke a million times that week.  He was not my Sammy and he knew he was not the old Sammy he wanted to be.  My son grew up and gained such astute maturity about himself, his body and his situation, I was proud and yet longed for the innocence of children who feel no hardship. (I know so many do). 

But things got better more quickly than normal too.  Before the first week was over, he was chatting and happy, moving with his 'old-man' gait, and has actually been to school for several days.  He loves going to OT and PT, especially today...he got to exercise in the pool :)   Sam sleeps though at least half of the school day, but he is also able to be part of the class again and sometimes plays outside, Brian or I acting as his aid so he is safe. 

Today, life is good.  We are moving towards  the chance of an easier phase, and hoping to have a summer with less fevers, pain and emotional stresses.  Fingers crossed!!!!


  1. Hi! My name is Marilyz,I meet you in the hem/ong clinic in CHAM.We spoke very briefly so you might not remember me.I have a 2 year old daughter soon to be 3 that have ALL (B-cell diagnosed on 4/9/10).I was googling sites of parents with children that have this condition, and I came across your blog.I got so excited when I found it that I read the whole blog in one day!!!I've laugh,cried,smile, and felt all sort of emotions just reading it.I know how hard it is to be a parent of a child that has ALL so I related to you, and that's why I really wanted to tell you that im glad that you put the time to write,and put your emotions and thoughs into it.I always have your family in my prayers and I believe that your Sammy will go on to live a happy healthy life...God bless your family and I hope I see you soon...

  2. Hi Marilyz, I am so glad you found the blog helpful in some are at an earlier stage and will have your own road to travel with it all, but please contact me at any time to ask questions or just vent....we are going through more than we should and we need as much help as we can get. Grab me at CHAM if you see me so I know who you are (I think I already do but just in case I have someone else in mind).


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