Trying to Look on the Bright Side of Life and Failing

The past few weeks have been tough, what with hospitals, chemo cancellations and the sudden drop in Sammy's counts again.  (There is also the usual list of reactions Sam has to the first day of each cycle: neuropathy; headaches; shakes; reflux; constipation; food cravings; mood swings; and the constant, never ending fear of the pain).  What has made this time most unbearable, however, is the conversation I had with the doctor (Dr. Gill) at the clinic last Thursday.

The clinic visit was already changed due to the usual weekly injection of Asparaginase being canceled due to a shortage and Sam was not getting his two shots (one in each leg) of the PEG Asparaginase until next week.  In addition, the social worker from CHAM 3 had put in my request for Sam to see a psychologist so he was meeting her for the first time.  I had let them sit together while I talked to the doctor in the hallway..I really wanted Sam to be able to bond without Mummy hovering. 

So I covered my usual questions and found out that once the Doxorubicin is over, Sam will have to have his port accessed every week for more Methotrexate.  I then asked Dr. Gill about how different Maintenance (the last phase) will be once Sam gets through the battery of chemos during this phase which ends about June.  Upon hearing the only difference will be the end of the Asparaginase shots,  ALL the other chemos AND the steroids will continue at the SAME DOSES,  I was devastated.  Sam can hardly function during the first week and the second week he has been reaching Nadir (the lowest point of his blood counts) and has either been kept off chemo or hospitalized with a fever.  I asked why we were told it gets easier...this phase certainly has not been, and yet we have been told time after time it gets better... and the kids should all go to school... and the magic unicorn will protect them from catching anything even if their counts are zero...blah blah blah!!!!!

Basically, Sam 'could' get used to the meds and be a little better over time.  OR, he could just be one of the kids who suffers through treatment and has to deal!  I actually saw the doctors eyes tear up as he told me this...and then he added, "Sorry Dr. Cole, but Sam should NOT go to school when he is neutropenic!"  So we are keeping him home. 

BUT....my sick days are done so I had to go back to work and Brian has used his FMLA leave up.  So, as we had been told many times to do, we asked the district to allow the teachers who had volunteered over the past few months to donate a sick day to me so I can be out if Sam becomes hospitalized or needs me due to pain.  The Board of Ed decided NO!!!!  They would not allow me to have donated sick days to look after my son.  Apparently, had it been me with the cancer, I may have got them.  Poppa has become Sammy's caretaker...we love him for doing it but I am dying inside.  We cannot afford to just take an unpaid leave so we will have to do as we have been doing...taking one day at a time...face the mounting medical bills....and keep moving forward...although if anything else hits us, I am not sure I will make it.  Can't wait for the landlord to tell us to move out as he wants to sell the house :(