I got a chance to sit down and talk with Dr Lew today while Piper was sleeping. I have been compiling a list of questions to ask about Piper, Leukemia, treatments, etc...things that I am certain that were drawn out for me before we began Chemo, and yet...I dont remember much about that meeting. We were less than 24 hrs into her diagnosis and the meeting felt a little like chatting with Snoopy in Charlie Browns Christmas, "wah wah wah wah...leukemia...wah wah wah wah...35% survival...wah wah wah...leukemia.." Its a blur.
But today I got almost an hour of undivided attention with the Oncologist that specializes in Leukemia, specifically infant Leukemia. He is a very smart and easy to talk to guy...so I talked his ear off. I knew that Infant Leukemia was differant and much more rare than Leukemia in children, but I didnt know that only an average of 100 cases are diagnosed nationwide per year. And that is for children under 1 year...under 3 months is about 25. Thirty cases and my baby girl got it. (Odds like that and Chad and I should have been gamblers a long time ago.) Her Leukemia is not like those of the kids you know. She will have more drugs pumped into her body in the first 6 months that most patients will have their entire treatment plan. Piper, like most of you have been hearing me say, is beginning phase 4. After this phase she will have mainly outpatient chemo until next Sept and then begin monthly clinic visits and lots of home oral meds. All of this is barring a relapse. Relapse in Infant Leukemia is ridiculously hard to fight against, changing her chance of survival to less than 20%. Dr. Lew told me that with Infant Leukemia, if its coming back it comes back either while she is being treated or within months of finishing up those 2 years. So basically they have one chance to really get it all. Infants will relapse typically while being treated or very shortly afterwards. So for the next 2 years they watch her blood counts. They look for signs that something is up. And if they have reason to they will do a bone marrow test and if the leukemia is there...we have a relapse and things will get uglier. Oh pray sweet friend that Leukemia stays away from her little body.
Positives. And there are some positives with Pipers diagnosis. One is that her White Blood Counts (WBC) were at 7.26 at diagnosis...that means they were ridiculously low for her to have leukemia. Nothing was pointing us anywhere this sickness and for all intents and purposes she would have been fine for weeks until it invaded her body completely. Dr Lew said that either her body was in the very earliest stage of growing the icky cells or else she doesnt have very aggressive leukemic cells. Either way, he made mention of this as a positive. Also, Pipers body has not been wracked with infections or fevers and yet she has side effects. Meaning her body is responding to chemo but not reacting negatively. Another positive is her remission. Remission means that they cannot find more than .5% of leukemia cells in her bloodwork. Deep remission means that they cannot find more than .1% of Leukemia cells in her bloodwork and Dr. Lew was fairly certain that she not only acheived remission quickly, in the first month, but deep remission at that.
Negatives. I hate the numbers and I hate the statistics. Her age is a negative. Her MLL gene being rearraged is a negative, because it makes it harder to treat if the leukemia should come back. Like Dr. Lew said, "Piper is writing her own Leukemia story. I do not know the ending but the story is hers alone". I cannot compare her to other infants although I find immeasurable comfort talking to other Mommies who have walked this same path. Piper and how she does the next few months and years is in Gods hands.
I feel strangely better. I tend to put myself in denial with Pipers illness. Yes, she has Leukemia...a rare and difficult type of Leukemia, but thinking about it all day long and planning around it for the next months and years only steal from us. I cannot argue with the facts and the logics of this disease and I cannot foolishly expect God to sway His will to mine but I can rest in Him. I can know that He created my Piper, no... the Bible says He "knit" her together in my womb. She was not placed there willy-nilly with no purpose and no plan. I may not like what we have been dealt. (And I do not) But it is what it is and I want more than anything for each of you to feel that peace as well. God has not angrily squashed my dreams with this illness. Nor did He walk across them without knowing it in some absent-minded way. His plan is big. His plan is redeeming all of us, especially the ones who think we dont need Him. Whether my Piper lives to see 1 year old or lives to see her great-grandbabies will only happen according to His plan. My plan is to raise both Piper and Linley to love the Lord so that when, not if, I loose them in this world that I will always, always, always hold them in Heaven.
I am not sure how this blog went so quickly from letting you know the facts of her disease to me crying in my faith, but I am well. Piper is too and I am assuming Linley is happy with her Mimi. Chad will be here with me tonight and I have a rotation of friends and family coming to keep me company and to keep Pipers attention. She is wigging across the room and I am going to go pick her up and kiss on those chunky cheeks.