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LTM Here We Come! But first… **udpdated**

December 28, 2009

Each section of protocol ALL 0331 have been somewhat short, eight weeks or less, but today the doctors set a new goal, the end of treatment…..May 2011.

Today Isa kissed Delayed Intensification 2 good-bye! Papa took her to the clinic for her dose of Vincristine and blood work. Today as I stood in the living room with the phone to my ear, I cried. A cancer parent spends a lot of time crying, but today, the tears came from relief. She has yet to start Long Term Maintenance, and the VOD has thrown us for a loop, but we have made it through the first parts and maybe, just maybe we will make it through the next part.

The above, written earlier today, projected guarded optimism. In hindsight one can recognize the “Wishful thinking” considering I just dropped Isa and Papa off at the ER!.


As veteran cancer parents, aka knowing, I waited with Isa in the car while he went in and cleared the way. Every cancer parent with a neutropenic kid knows that they get out of waiting in the waiting room. BUT not all the staff knows this. That being the case this time, Papa cleared the way then Isa walked in unimpeded.

As I type this, I received a text/tweet from @chef_lucien stating that the port accession failed. These trips to the ER can be traumatic in more ways than one. She was just de-accessed today at noon and now, the nurses there have flubbed it. No draw, no blood return. We’ve had a little trouble with this up in clinic too, but in the ER everyone gets freaked out. Deep breath. And I am here at home tethered to the electronic media just as you are.

As I’ve mentioned, platelet and blood transfusion can cause fevers. BUT the nightmarish fevers come with neutropenia. Again neutropenia is a mathematical equation based on the number of WBC. Normal is 1500 or above, today Isa rang it at 108. VERY LOW after being 1088 on Thursday. This low immunity causes a host of reactions.

One of which, fever, can be benign, simply a reaction to being so low. OR it could portend a sepsis or septicemia which can turn nasty very quickly.  Hindsight has always shown us… fevers are not such a big deal. BUT, a nurse told me recently that a family ignored a fever and stayed at home. That child ended up in Intensive Care Unit for the past three weeks.  Do NOT ignore a fever it can be deadly.  BUT… in the other cases, it is an inconvenience. Isa likes the hospital because she gets to watch tv and eat “good food”.

Our hope >>>> 48 hours with no growth of cultures, no fevers and ANC going UP UP UP.

Then she’d be released Wednesday night. Anything other than the above and we’re looking at extra days.  So until then email, text or tweet for updates.

dirtymouthmama at gmail dot com or

and if you know me then you got my number for texting…..


Tuesday Morning Counts:  platelets 17,  ANC 0, monocytes 0  She has to stay in until her ANC starts to rise.

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