Changes in the Chemo

As I have mentioned, we are in the Maintenance phase of the treatment.  Some of the aggressive chemo drugs are done, and we have enjoyed a less neutropenic state for a while.  This school year, Brian and I have been literally dropping Sammy off a the clinic with Poppa, rather than stay and arrive at school a little late.  (We are eternally grateful we had the support to have done that last year, but it is so hard just leaving Sammy to be pricked and prodded with needles and toxic substances each week.) Nana and Poppa have been superstars, never failing to take over and be there as long as it takes....but it is so hard to walk away and wait for the call to say Sammy is done and will meet us at school.

Sammy had a bad clinic visit today.   His port was not accessed correctly and had to be redone, blood appearing at the port site, putting the terrors in my poor baby.  Now this can be quite common and we certainly don't blame anyone, but it really shook him up and Mummy wasn't there to comfort him.  Talk about feeling guilty!

Another downside to not being present during the clinic visits is lack of communication.  Sam's Mercaptopurine doses have been increased, and I discovered this after he came into school in the afternoon.  I haven't done this in a while, but I decided to email Dr. C to find out directly what was going on.  Below is the email - it explains everything and saves me re-writing it over again:

Hi Dr. C,



Happy New Year! I have a couple of questions for you...not being at the clinic myself today, I'm afraid I have to ask via email. Firstly, I notice Sammy's 6MP has been increased on Thursdays to 75mg. I know that that is a normal dose for a child, but I was wondering why it is increased. I am guessing his weight has increased and therefore the dose needs to, but I also know we have to aim for as near to the target dose as we can while keeping the blood counts between certain levels without drastic toxicity...so I also wonder if it is time to start pushing more into him to further reduce the chance of relapse? We were only given a prescription for 14 tablets which is not enough for the new dosage, so I also want to make sure the prescription was wrong, not the dosage chart.

Secondly, I have asked this before and been reassured, but being me, I need to check again: Sammy still takes his meds crushed in a small amount of soda, therefore he never gets the full tab no matter how hard I try. We always give the 6MP at 10pm so food had been somewhat digested, but he cannot drink the recommended amount of water as he basically drinks in his sleep. Is all of this okay? I know he is not showing any bad signs, but I'd hate to continue as we are, only to discover we HAVE to get the whole tablet in him (somehow). I also worry about his liver with us not getting water into him.
Thank you for your help with this...we are very settled into the chemo routine, but now and again I need to check in with you.
Katy

I know Dr. C will give me a straight answer...he has always helped me understand what is going on without 'fluffing' the big picture.  I appreciate this and trust in how Sammy's protocol is being handled.  I am just a mummy who needs to BE there!

Ten minutes later....

I have just received an email back from Dr. C...told you he was good.  The dose is being increased because Sam's counts have been so good so they can push more into him to help reduce risk of relapse.  He apologised for the incorrect prescription, although I know it was not his fault.  He is concerned, however, that Sam is not getting the full tablet of Mercaptopurine.  He is calling me at work tomorrow afternoon to talk with me.  Tomorrow will be the longest morning EVER!