Thursday, January 28, 2010

Happy baby

If one is in the hospital with a baby undergoing 6 hours of chemotherapy each day, what is the obvious thing that should be included? A big sister of course. And so I begged Chad to bring my lovely 4 year old Linley up to stay the night. Piper' nurse tonite and tomorrow is her primary and she lovingly turned a blind eye to the 3rd body in the room...and promises to do the same tomorrow. Provided Piper continues to be so jolly.

And jolly she is. She is laughing and smiley and dont you know we are walking all over this hospital. She feeds off of the attention and thank God there are many a nurse, cleaning lady, stranger to smile and her and tell her she is so pretty. She will probably respond to "pretty" as much as "Piper". Linley is a great addition and makes Piper so happy. Of course, being a preschooler, Linley cannot physically WALK anywhere. She must skip, hop or do the "Look what I can do" thing from MadTv...and it cracks Piper up to no end. Linley has promised me that she will behave for a few hours. She said this so earnestly that I have no doubt for a few hours she will be angelic...and then she will get tired and I will pull out all the mommy tricks that I can. It will be worth it to have both girls here with me.

Medically, Piper has been getting about 6 hrs of chemo each day and we will be going home on Saturday. Her appetite is dropping but other than that she has not been any more fussy or irritable. She gets Zofran every 6 hrs to combat the nausea and throwing up and so far we are good. She has begun to really roll like crazy here in her crib but I just attempt to remind her that its is really futile...there is only so far to go when you are hemmed in a hospital. She also has begun to raise her torso up off the ground and get her knees up under her and rock. Crawling? Really? Really? Kiddo...should we tell you that you are sick? Sweet girl.

We were delivering some coffee to a friend whose daughter is in the PICU upstairs and passed our pastor in the waiting room. We go to a fairly large church and while the pastor knows our story, we havent talked outside of church. We stopped to say hello and found out that he was here visiting another member of the church whose daughter was in an automobile accident. She is not responsive and I can only imagine how her family is feeling. And yet, I can honestly vouch that God is Good and He cares for those who love Him. Not always in the way we think we want but in the very way that we need. I am praying tonight for the whole family and please join me. I could tell you for hours all the needs that friends and family have...I could tell you hundreds of sad stories that moms and dads tell me in the lobby every day. And I will tell you again that God is still good in the midst of the me and then ultimately Trust Him.

Friday, January 22, 2010

Clinic visit but no admission

We went to the Clinic today to have Pipers blood counts checked and hopefully admit for Chemo. But, her ANC is at 420 and it needs to be at 500 to start another round so we were sent home and told to go to our local hospital on Monday to check again and if they are up we will begin more chemo on Tuesday when we admit. After speaking with Dr B, who works as a team with Dr Lew, its been decided to skip this next dose of Methotrexate and go ahead with the next 5 days of chemo (etoposide, mesna and cyclophosomide) as closely on schedule as possible. I am not entirely sure how I feel about this. Selfishly I want nothing more than to keep Piper from feeling and going through what methotrexate has proven to do to her little body. But not at the risk of ultimate cure. I am concerned that it will not give her the attack that is necessary but the Dr's seem to think that the last dose obviously gave her enough. They think that the last dose of Methotrexate, especially because her body does not flush it out quickly, gave her all her body needs and can handle. I just pray that it is the right decision...unfortunately we are at the mercy of humans making decisions for my child's health and life. I just pray that God guides their choices and continues to work in Pipers treatments.

Life here at home is simply good. I am really working with Piper on solids, of course she has little interest in anything on a spoon but we are having small victories with applesauce and carrots. Biter biscuits and bananas are always a big hit...for licking...not biting. She got a bath tonight and for the first time in 4 months there were no tears. She idolizes Linley and lights up whenever she is in the room. Sleeping is becoming more difficult because just when we becomes accustomed to a hospital schedule we are sent home and a new schedule happens. Or while she is sick I am much more liable to rock her to sleep. Last night I put her to bed and she cried for about 30 minutes but tonight it was only about 10. Hopefully she will get used to getting herself to sleep again. A mom can dream, right???

Linley has regaled me with The Pledge of Allegiance in well as sounding out simple words like ELF and YES. She can easily recognize her own name as well as the rest of our names in the family. Linley can also add single digit numbers. And just when I am so very proud of her she shows me that she is still very much a 4 year old by eating, yes chewing, large bites out of her styrofoam cup while I was talking to Dr. B. Brought me down a few notches off of my high horse that's for sure. Irregardless, I think that she is wonderful indeed.

Tuesday, January 19, 2010

Healing on up...

When we were admitted on Friday the Drs kept telling me that they had written a 'script for a morphine drip and also for IV nutrients whenever I was ready. I fought it telling them that I wanted 24 hrs with Piper on Lortab only, that I was certain she would feel well to eat enough to keep nourished and hydrated. I am going to continue to trust my own maternal instinct because last night at 4am, Pipers CVL broke. Her CVL (central venous line) is the tube that goes from the main vein near her heart out her chest and connects to the IV pole when we are inpatient or simply gets taped to her clothing when we are at home. Its the only way she receives fluids, chemo and most of her medications as well as transfusions for blood and platelets. Like I said it popped this morning but we had an amazing nurse who was on it and called the repair team who had it fixed in about 30minutes. Because of it being repaired, we had to unhook her from the IV and not use the line for 24 hrs...if Piper had been on morphine or iv nutrients we would have had to put a temporary line in her hand or feet. Thankfully she was able to be without fluids or the pole for the whole day because she continues to eat better and better and is happy as a clam. She has not had any Lortab or Zofran since 10am and I am hoping she feels well enough to stay off of it all.

Since it was a weekend then MLK day, Pipers usual doctors were not here. They should be back tomorrow with a plan of action. She is still due another 24 hr dose of Methotrexate but Dr Lew showed some apprehension about giving it to her because of her reaction to it, this time and the last time as well. There is talk of canceling it, talk of putting it off another week, talk of giving her a lower dose and talk of going ahead as normal on Friday. I pray that the Drs. use wisdom they don't understand and that God leads their minds. I am frightened that if we do not go ahead as the protocol plans that I will always wonder if that was the "cure" dose if Piper were to relapse. Its all so scary.

As of right now we are doing wonderfully. Piper is one of those rare kiddos who doesn't nap on Lortab so she catnaps while eating a bottle and then stays up until 11 or 12...and sleeps until 9 or 10. Yet another vision of parenting a teenager. Shes going to be in for a shock the next time we are home and out the door at 830am for Linleys preschool! Speaking of Linley I am missing her little self. I have not seen her since Friday and I am hearing many funny stories from my parents. Linley is a fountain of funny sayings and I constantly rejoice that God made her my very own. Of course she also keeps me on my toes but my dad says she is just payback for my own headstrong and opinionated self as a child. Thanks Dad.

Saturday, January 16, 2010

tanning beds and chemical burns

Piper is soundly sleeping after a happy day of drooling and pooping. I make them classy, don't you think? Her little wrists and legs look horrible, but she is "Lortab-oblivious". In essence, the Methotrexate that she got last weekend has seeped out her skin causing her to look as though she fell asleep in a tanning bed then ran into a chemical fire. Its ugly but like I said, she is very contented. Her lips look a little better and she has been taking small bottles fine. Her bottom still has raw spots but truly I am so used to her bottom looking that way I hardly notice and smother her up with the handy-dandy spackling style sensi-care cream as if I were in a trance.

The weekend doctor was actually impressed and said she had fully expected to be giving orders to put Piper on Hyperall (sp?), which are intravenous nutrients and morphine around the clock. As it is she is eating about a 3 oz bottle (jacked up with lots of rice cereal for calories) every 3 hours, including one hazy middle of the night feeding that every bone in this mommy crying out the wrongness of...I live by "never awaken a sleeping child"...but have altered it to "never awaken a sleeping child unless they have Leukemia and you are trying out new tricks to keep them growing and going".

We plan to be here for a while. Piper's blood counts bottom out around 7-10 days after she gets chemo and she got the Methotrexate last Saturday so she is on her way down. Once she gets there, she cannot heal until her counts begin to come up naturally. When they come back up she will begin to feel better and hopefully her skin and mouth will look better as well. Unfortunately, because she has low counts that will get worse before better, the Dr wants to keep her here to watch. So here we our second home. :)

Alot of you have asked for specifics to pray for. As always, pray for this chemo to do its job on Pipers body...that it is effective and ultimately cures her. Also pray for Chad. He has a busy juggling game of school, work, bills, mr mommy-ing, missing Piper and I and still wanting to support us...its enough to keep him running. And of course Linley. She is quickly learning that differant caretakers allow differant things and it makes it difficult at times to enforce the family rules that she knows and does not love.

Friday, January 15, 2010

Day 9

Methotrexate stinks...both literally and figuratively. Piper is going through bibs like crazy because the methotrexate comes out in massive amounts of drool. And its a very distinctive smell that turns my stomach and reminds me constantly of what is in her tiny little body. No bueno.

We went to clinic today and planned to admit for the second round of HD Methotrexate but Nurse Amy took one look at Piper and told me that Chemo couldnt happen. When she heard about Piper not eating much, it clinched it and the Dr. came in and examined Piper and confirmed it. They did admit us for at least the night to do a blood transfusion and watch her eating while giving her Lortab to manage her pain. She has a (methotrexate) rash that covers her wrists, hands, knees and legs. It almost looks like a burn victim, and it is ugly...although that itself doesnt seem to be bothering her. She has ulcers on the insides of her lips and will not immediately take a bottle. I have to offer it to her and be persistant as she realizes it wont hurt if she sucks with her tongue not her lips. So far, since admitting she has taken about 3 oz every 4 hrs or so and I plan to keep it up throughout the night. Her bottom is broken down but in a diaper rash kind of way, not methotrexate rash kind of way.

Because of all of this, she will not be getting the HD Methotrexate for at least a week. Dr. Lew mentioned that she may get a smaller dose or perhaps even skip the next dose. I am not sure how I feel about that. Thanks to my father, I tend to not like procrastinating on anything and I get immense satisfaction out of following a plan to the T. We are not following the plan Dr. Lew...I am not ok with that. He told me to remember that the protocol they follow for treating Pipers Leukemia is merely a "blueprint" or educated suggestion and that tweaking it is normal in each case. But as I said before, I like a plan and I like to do said plan quickly and accurately.

Please pray with us for wisdom for the Doctors making these decisions. Seeing Piper in pain is horrible but if it ultimatley heals her, then I can handle it. Putting her through unneccesary pain is not good and I fear pushing her body too far. I am torn but am trusting that God will guide the Drs minds as they chose the best path. And also pray that Pipers rash heals up and her mouth as well.

I am so ready to be over this phase and it is only day 9. Oh my.

Wednesday, January 13, 2010

Earrings make me smile

Today was shoddy from the get-go. If you are one of the many people who happened to ask me how I was doing and got the waterworks...I am sorry, but thanks for listening.

And since today had so very many tears, and I was still waiting to pick Linley up from preschool, I wandered around town and ended up in a shop called Charming Charlies for the first time and splurged on a pair of fabulous earrings that made me smile. And by splurge I mean $7.95.

Yes, they are owls and I say...fabulous.

Tuesday, January 12, 2010

Get the Methotrexate out!

Last night we had a "floater" nurse, an occluded line that beeped every 20 minutes and a case of the missing Sensi-Care diaper cream...All in all, I am totally glad that my mom was here to help me out when Piper woke up at 8am. And now my Aunt Paula has graced me with her sweet face and helping hands. But unfortunately she made mention of having a "Girls Night" and Piper thought we were talking about her she made sure to stay up until Midnight. Happily flirting with the security guards in the lobby and wrinkling up her nose while laughing at us. Who has HD Methotrexate in their little body???

She finished the 24 hrs of Methotrexate at 9am Sunday and her levels were at 150.76. They like to see them at 150 at hour 24 so as a precautionary measure they bumped up her fluids to chase the stuff out quickly. The longer the Methotrexate stays in her system the higher the chance of mouth sores and bottom break down. So the nurses took that 24 hour draw (9am Sunday) and then again at 12 noon and she was at 86.0. She followed with a 10pm draw of 2.26, a 3am draw of 0.70, a 9am draw of 0.30. They consider her 48 hr level draw to be 9am this morning and are happy with how quickly she is getting the stuff out...Leucovorin began this morning at 3am and will be given every 6 hours to coat the good cells and organs from the Methotrexate that still remains. Her catheter has leaked some, but her bottom is not too bad...she has a rash on her wrists and knees, but I was told that is common with Methotrexate and we are just watching to ensure it not become infected. Please pray for a spot on her cheek/jawline, it is red and I am putting aquaphor on it to keep the Methotrexate drool off of it.

Piper will have another draw at 3am and hopefully by the time I wake up tomorrow we will know the results. Anything under 0.1 is reason to head home and I would love to have 2 full days at home before heading back for another 24 hr dose on Friday.

Everyone is very impressed with how well Piper seems to be doing so far. She is still smiling and laughing. I know she is tired or her muscles hurt because anytime I sit her up she immediately begins to keel over and she usually sits up alone just fine. We have had a very busy few days visiting with all of out AFLAC friend, patients and nurses both. I cant imagine not having familiar faces when we land here...It makes all the differance.

Sunday, January 10, 2010

Linley and Lego's

Linley and I built stuff with her new legos she got the other day as a late Christmas present. She was super siked because we made people out of legos. The one to the left without a face is the daddy one. We had two faces for the girls, but not one for the daddy. We built a super cool pink house and a doggy.

We made a special lego "Pearl" for her mimi. Sorry mom, I couldn't help myself, we all know three legged dogs are funny. Well, not much else going on here. The big one is still beautiful, funny, and smart.

Saturday, January 9, 2010

Facts are facts and the facts stink

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 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.

Friday, January 8, 2010

Phase 4, day 1

Yesterday was Pipers 6 month birthday! She is amazing...especially without steriods in her body. Smiling and laughing all the time. Rolling all around and sitting up like a pro. She has no interest in eating any food off of a spoon but I am so sure its because of being fed yucky medications orally. She will gnaw the heck out of a banana or a cracker though! And she will lick her fingers if I splat some baby food on her table...way to be sanitary, eh?

Georgia shuts down at the slightest mention of snow so there was talk of not going into Clinic this morning. We waited until the sun came up and made it here with no problem. Piper got her triple chemo in the lumbar puncture and a catheter in for the HD (high dose) of Methotrexate that she will begin any time now. We came across the road and will be inpatient until Tuesday I am assuming. Pray for the stinking never stays in and she always leaks and it usually becomes more of a hassle than anything.

Its not so bad being back at CHOA. I cannot tell you enough how wonderful these nurses, doctors and personnel are. Once we walk through the doors, people are chatting to Linley and Piper both. Right now, I know 4 pf the patients from other visits and it is almost like a reunion whenever we are admitted with friends...of course, here the kiddos are a little loopy from lortab and have lines and catheters hanging out but I am chosing to be optimistic. Most of us parents do chose to be optimistic on a daily basis because really, what can I complain about? As my sweet Linley said the other day in the van...*sigh* "You and Daddy werent tricking me mommy, life isnt fair". The sadness in her voice was obvious and I am not sure what helped that epiphany, but it was poignant none the less. Life is not fair and Thank you Lord for getting us by anyways.

Tuesday, January 5, 2010

Phase 3 is more to go.

Chad bought me a Flip camera for Christmas. Of course I have no clue how to do much with it but thankfully it only has 5 buttons and I am fairly hopeful that I can figure it out. Perhaps even with a fussy little one on my hip and a chatty big one at my side.

Oh well, once I get Chad to help me out with it, I will upload the mini-video of last week. Keep in mind that Piper had chemo on Monday and was getting Dexamthasone steriods from Mon until Sunday and that on top of Neupogen shots at night make for a very clingy girl. She also has been very hungry and gained almost a pound and a half in a week...shooting her up to a grand total of 13.4! I will take it. She has not slept through the night since Sunday and is even waking up 2 or 3 times for bottles before waking for the day around 8ish. She is only on her oral antibiotics this week so I am hoping that she settles better into her more normal routine quickly so that I can stock up on sleep from now until we admit to CHOA on Friday morning at 8am.

Chad begins classes on Friday and we are prepping for a rough few weeks ahead of us. Piper has now completed phase 3 of her 4 intensive phases...WITH NO INFECTIONS!!! This is amazing and I cannot tell you how relieved I am for that peace in the midst of the fear that the big picture brings us. Starting on Friday, Piper will be given High Dose of Methotrexate for 24 hrs and then they pump a "rescue drug" into her system to chase the chemo out of her before it can do harm to her organs. She will continue to receive that "rescue drug" call Leucovorin every 6 hrs until her blood work shows the HD Methotrexate below a certain level (forgot what the number was). At that point we will go home for about 2 days and then come back the following Friday to do it all over again and then be done with the HD Methotrexate. We are praying that Pipers body handles it well. That she continues to remain infection free and that we are able to enjoy her fully when we are at home.

Please pray also that Chad is able to find employment here in Athens. He begins classes on Friday and will be looking for pt work. Once he lands a job and we figure out student loan stuff we can begin to check into renting our place on campus...our tiny, small OWN place on campus. Because of Piper and her treatments I am unable to bring in an income, leaving it all to fal, on Chad. He has very strong and capable shoulders, so I am not worried.

We also are happy to let those who have been praying, that Linley received 6 weeks of her growth hormone shot tonight. She has been without it because of appeals to her insurance for over 2 months. Thankfully we have been given enough to get her going again, with the promise of more if insurance continues to be a hassle. And she took the shot just fine, too. What a trooper she is.

My Linley really is handling all of this well. She and I went to see Princess and the Frog on Sunday night. We called in a "girl date" and chatted about how nice it was to listen to girl music and not hear Piper crying...well, Linley was especially happy for those things. She understands that Mommy and Piper are going back to the hospital for a sleep over for a few nights. Thankfully I am able to tell her that we will be home soon...I knw she misses us, but I can easily do a 5 night separation when I think back to our initial 6 week stay at the onset of Pipers diagnosis.

As soon as we can get the video to work out I will post it. And as soon as I get around to learning how to take all of the videos I will post even more.