Consolidation - Day 34

I will admit that the excitement of Friday's news subsided rather quickly.  We have a really long way to go.  Childhood Leukemia is expected to be put into remission the first time around with today's protocols of chemo therapies but without the next 2+ years of follow up treatment, it would come back in a heartbeat.  I would say my feelings this weekend were those of joy, thankfulness, and strength....but not relief.  I have known for sometime now that the small part of me that carries on scared most of the time is not going to go away for the duration of this ordeal.  It cannot be ignored though we have found information gathering and being pro-active every step of the way both do well to ease our worries.  Our biggest cheering point to date from a medical standpoint is that she has been classified as an early responder (since she was nearly in remission after 8 days) which by some small %, improves her prognosis.  Never thought I would long for the days a couple years ago when sleep deprivation was the only concern.

With the cancer in remission, the goal now is to deliver a knockout punch to any remnants of the disease that may try to show up again.  Some leukemic cells can come back and potentially become resistant to medications used during Induction and thus this next phase introduces many new drugs that pack equally powerful punches so the cancer cannot get used to the same ol' foes all the time.  Ellie starts the second phase (of the three major phases) of therapy on Wednesday and will be in it for about 7 months.  It has three stages which include Consolidation (8 weeks), Interim Maintenance (8 weeks), and Delayed Intensification (8weeks).  We have been told the first and third stages of this phase will be particularly hard due to the dosages of medications and thus increased side effects.  I mentioned before that she'll be receiving four intrathecal injections of Methotrextate into her spine each of the next four Wednesdays, so she'll be in to LPCH by 7am to be prepped for a procedure involving general anesthesia.  Polly and I will also begin giving her Mercaptopurine daily by mouth for the next two weeks which will require a shift in her evening diet.  This drug works best when it can be absorbed on a stomach free of dairy products.  Given her affinity for yogurt and milk, this will be difficult.  It isn't that she no longer can have yogurt, its just that we will have to shift alot of what she likes to eat to earlier in the day.  Remember she is also 2 years old and "just shifting" things around is certainly not as easy as it sounds.  Before each stage begins, she will have to meet blood count requirements of 75K platelets and an immune system neutrophil count (ANC) of 750K.  She is currently about 12 days since her last chemo treatment and because of the large gap of time that has gone by, she was all ready at 300K platelets and 950K ANC as of last Friday.  So, we should be good to go on Wednesday.  A quick stop for labs tomorrow will confirm that.

Next Monday, she will have her PICC line taken out and a surgically inserted Port put in.  This will allow her to receive all medications just as easily but with a much lower threat of external infection at the catheter's input.  She'll be able to do a few more things than she cannot do now (like take a bath or possibly even go swimming!).  We enjoyed our weekend together and saw some friends.  Tonight, Polly's parents babysat for us and we got to go out to dinner for the first time in a couple months.  That was really nice.  Hard to explain but this feels very much like the calm before the next storm.

This weekend I spent a few hours researching our cytogenetic result.  I hadn't paid much attention to them because the doc had originally said they were not bad results.  With Leukemia so closely tied to genetic abnormalities, both my scientific inquiry mind and desire to be ever so pro-active with knowing everything there is to know to help Ellie took over with an overwhelming desire to figure out every part of that report.  A understanding of cytogenetic findings can help gauge her prognosis and also aid in possibly changing treatments if the situation merited such a thing down the road.  Unfortunately, not all cytogenetic results are conclusive.

So, as a quick Genetics refresher for you - Every normal cell has 46 total chromosomes with 23 coming from mom and 23 from dad.  Every chromosome contains the genetic data (DNA) that makes up who we are.  Ellie's leukemic cells were analyzed and found to have two distinct abnormalities which are more or less assumed to be the reason the cancer showed up in the first place.  What no one knows for sure is why these abnormalities occur.  The two things they found were a translocation between chromosomes 1 & 9 notated as t(1;9) (which is where a piece of each chromosome swaps places with the other) and an extra chromosome attached to the pair of chromosomes in #21 (thus her overall chromosome total is 47).  Typically through these tests, they look for the 4 known translocations that have shown up in most leukemia patients.  2 have very good prognosis, and 2 have very poor prognosis.  Our cytogenetic tests specifically looked for these four and came NEGATIVE on all counts so Ellie has none of them.  The problem is, this t(1;9) is no where to be found in the literature as to what the exact relation it has to her prognosis.  We are lumped together with a couple "other" rare translocations and so far are only left to speculate.

I hope with the good news last Friday, you won't stop praying for Ellie.  It is the number one thing anyone can do to help and we have many needs for strength ahead.  Here is one I needed tonight which I found through an Oncology link at Cincinnati's Children Hospital mentioned by another parent on the LLS message boards.  The bond I have felt with other parents who are going through this is enormous.

Tender and compassionate God, you are our steadfast companion in the joyous times of our lives. When we rejoice, you celebrate with us; when we are anxious and afraid, you offer us a relationship where we can find courage to face the unknown; when we weep with sadness, you are our comforter. Help us, O God, to believe that you receive us as we are, and help us to entrust ourselves, with all our many struggles and hopes, to your faithful and abiding care. Amen.

Consolidation - Here we come.