End of DI - Day 258

End points create a time of transition.  There is much to celebrate from where we've just been and we applaud the accomplishments and lessons learned looking back on very trying times.  No more PEG shots, no more awful Dauno, Doxorubicin, or cytarabine.  We will see steroids again but not in such quantity within a given period of time.  In fact, we will not need to go into LPCH more than once a week after her initial part of Maintenance gets underway.  We are done, theoretically, with the most difficult stuff.  And yet as transitions go, this is as much a beginning glimpse of what's ahead as it is us walking out of the DI doorway.  I would be remiss if I did not say it came with some uneasiness.....well, because it does.

Polly and I had the great fortune of going out up to the city to an awesome little french restaurant with her folks and brother to celebrate her birthday last night.  Perfectly cooked meats, rich sauces, truffle oil (!!!) on all the right foods, french wine.....it was a feast and a deserved night away.  Like many memorable milestones, I will never forget what we did this weekend in part because this signified an end, so to speak, of us putting a lot of things on hold.  And so after such a gleeful and appropriate amount of thankfulness for all that we've been blessed with. it made it that much harder to wake up this morning knowing the slight yet unrelenting queasy feeling is still there.  We've started to plan their 3rd birthday party, have actively sought out times for re-enrollment to swim and music classes in the next two months that were so cruelly taken away from Ellie 9 months ago, and are only about 2-3 weeks away from settling on a pre-school for the fall.  It isn't that those things are not exciting enough or that we are planning the arrival of these events with doubt they will occur.  No, it isn't that I don't think she'll be strong enough either....because all you need to do is see her for one hour these days, hear her run through her ABC's with sheer joy and then witness the amount of life that is pouring out of her every happy move to be convinced.  Rather, its me being selfish walking out of the DI door forgetting my day to day pledge for the moment.  I want more.  I want decades more.

I guess at the heart of many of my thoughts is the fact that things have been going so well in terms of her treatment milestones met for quite a while.  She has had minimal complications other than dealing with the side effects expected of the chemo drugs and now has not had to be in-patient due to illness in over 6 months.  Even more remarkable, I remember a time I not too long ago I was cursing Vincristine's name....and her she was just last Friday getting her final DI push of Vincristine where it was the only chemo drug she would get that day....thus Polly and I both considered it an "easy" day.  Experience can broaden but also wise up your perspective in a major way.  So, if we are to be allowed to get back to a semi-normal routine in the next few months and then settle into a more normal way of life until she finishes maintenance treatment in October 2013, I guess I am asking aloud that if the other shoe is going to drop at some point.....God, could you please give us a little warning first so we can prepare ourselves?  There so much life to be lived in the next few years that it just won't be fair if our normalcy is taken away again.

Forgive me....Sunday night reflections do this to me.  Tomorrow we'll be back to it and hoping to make the best out of Monday like no Monday before it.  This journey wears on me on different days than it does Polly and perhaps that's a good thing so someone can at least focus and get up to tell Timmy to get off the coffee table for the 100th time as he is pulling his sister up by the arm to join him and begin throwing things off of it.  Fatigue is a definite factor on many days.  I just don't think I am ever going to be completely comfortable with huge celebrations of cancer milestones in my own mind because it won't be truly over for a very long time.....though believe me, Ellie will never see anything but cheers and smiles on those days from me.  She is learning to ride her strider bike, dress her baby doll, use utensils like an adult, slowly but surely learning the ways of potty training, owning a room when she walks into it with a new dress on.....and doing it all while beating Leukemia and these toxic chemo drugs that are inside her.  As far as I am concerned, she can party like a rock star for milestones as much as she wants.  She certainly deserves to.  In the midst of the celebration, I cannot help but look ahead sometimes to what's possible.  As we start to immerse ourselves into what's ahead, I promise to enjoy it but it won't be without a cautious and watchful eye.

Ellie's labs on Thursday showed an increase in platelets to near 90K and an ANC value just around the 500-600 mark.  Her blood is in recovery mode again and we expect those numbers to rise significantly in the next week.  It is always such a cool thing to see how fast her numbers start to recover.  We will go back in this Thursday for labs again.  She will need to meet the minimums of 75K platelets and 750 ANC values to begin Long Term Maintenance (LTM) on either Friday or the following Monday.  LTM is a series of 30 day segments that are relatively the same.  The cycle repeats itself until her end date of October 2013.  She'll start with a Lumbar Puncture, Vincristine injection, and begin a 5 day course of Prednisone steroids.  She'll have to take a 6MP pill daily and receive a Methotrextate injection 3 times a month. In month two, we repeat it all again with the LP only occurring once every three months.....and onward we go thru LTM.  The best part of the LTM chemo is not supposed to compromise her immune system so harshly and thus the reason we can start to pick up our normal activity again.

There are parts of this journey that compare to Sisyphus' plight with his boulder.  I am certainly not one to give up on something until either my legs give way or someone yanks me off that hill, but I can sympathize with the fatigue that wears on the overall purpose when the boulder seemingly keeps rolling back down.  However, reflecting on the actual reality of the situation keeps me from getting too carried away with worry surprisingly enough.  Verbalizing vulnerability helps push the reset button and allows me to sleep easier to be ready for tomorrow.  Make no mistake, we are at a good point right now.  Last night with a little dinner celebration, Polly and I finally pushed the DI boulder off the other side for good.  At the heart of all that I am lucky to have in this world are the unrealized dreams of my kids which I am experiencing pieces of everyday.  And in this moment right now in both a scientific and social context, there is not a valid reason in the world to believe that won't continue.