-5

Another day down. And yes I do have a literal calendar on the wall that I daily mark off...closer, closer and closer.


Piper completed her sixth radiation sessions yesterday at 6:30pm and none too soon. While we had no problems (thankfully) with the actual radiation it was difficult keeping her happy in this tiny room without snacking. Not impossible but difficult. Today when she woke up Piper was able to have a pancake which was only edible while dipping in syrup and some rice chex dipped in my chobani...I'm sensing a typical two year old trend of dipping and sharing food. I know at some point soon she will not be able to eat and will require an ng tube so at this moment I am contented to have her snack her way through the day. And through my plate.

All of Pipers bloodwork and cultures came back negative so she is no longer in isolation in her room. Of course, this being the transplant unit she is required to wear a mask outside of her room and she is not allowed out of the unit but still it's better to walk laps and play in the playroom than to drive mommy nuts. Major thanks to all the lovelies who have sent Piper little gifts...they are being hidden and are quick to come out when the moods gets grumpy. Huge, huge, huge help to me!

Today Piper began the chemotherapy portion of the work up regime for transplant. She is recently on hour 15 of a 24 hour transfusion of etopisode (vp-16). Tomorrow and Sunday she will have 2 hour infusions of cytoxan and the two days of rest before Transplant day. And she continues to feel well. Still playing and running around. No nausea or vomit. We stay up on her four times a day oral rising out and attempt daily bathing though that's a hot mess with 3 lines coming out of her chest that cannot get wet. Oh yes, her port was reaccesed with no problem and will be deaccessed when it is time to change the dressing on her CVL because the two have tegederm (tape) that is sealed together.

Like I mentioned earlier in this post, thanks for the gifts. Thanks to my parents, my sister, to the Halls and to Christy with Cancer Warriors for the visits...it means a lot to me. And to everyone who is keeping up with this crazy ride we are on, thanks as well. We're going to make it through this and you now have seats to watch the ride. I know it's going to be crazy but I also know we continue to thrash about still seated in Gods hands and will.

-7

Four out of Six of the radiation treatments are done. Almost there. I am so happy to be working our way through those things. Not that they have been horrible but rather because she has two sessions each day, one at 7am and another at 3pm. She is unable to eat or drink anything prior which is no problem with the first session but is a doozy between sessions when she is tired and hungry. We are keeping her pretty busy but its only been since today that she is allowed to even leave the room although she cannot still go to the playroom because of her lingering cough. So we suit her up in a yellow gown and a blue mask and off she roams. Thankfully they have allowed us to bring the play kitchen from the playroom into her room and she has been miss busy making us coffee and cheese...the only things she offers so I may not have high hopes for her being my susie homemaker. oh well.

Other than that we continue to have problems getting blood return from her port. Not sure what the deal is but I wager that it was partially the fault of the lady who accessed her in surgery. She was ridiculously bad at it. Today when Piper was sedated for radiation they attempted to access her and were able to get some TPA (clot busting agent) into her port and will leave it there until tomorrow morning when she is sedated again to see if that helps it along. If they are still unable to get blood return then they plan to remove the port before tranplant and neutropenia. Remember that her CVL is a double lumen so she will still have multiple lines to do transfusions and antibiotics and chemotherapy.

She is sleeping really well at night and I am pulling the bed up to hers so that she can still reach out and touch me if she wakes up but so that I dont have to spend the next 4-6 weeks sleeping on my left side. I am grateful for that one. Pipers appetite is slowing down but she does not seem nauseaus. I told a friend today that I know things will get exposentially worse so I am thankful for each day that goes by so smoothly.

I am thinking alot of the verse in Matthew (6:34) that says "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Its a good reminder to all of us when we get fearful of what is to come, both imagined and real. I also like to channel Scarlett O'Hara and say “Fiddle-dee-dee! I won’t worry about that today. I’ll worry about that tomorrow. After all, tomorrow is another day!” ...'course I leave out the fiddle-dee-dee most of the time unless one or both of my girls are having meltdowns in which case I belt that out and they stop what they are doing for a minute and look at me like I am nuts. Whatever slows a meltdown works for me.

One week from today and it will be Pipers re-birthday. A big day...one that cannot get here soon enough. And meanwhile we will continue to take each hour as it comes and attempt to not go mad in this tiny room with a silly little two year old.

Transplant -9

Today we stand 9 days until Transplant so we call that day -9. Each day we get closer and count down until Transplant day, which is considered day 0 and subsequent days are +. As in day +1, day +2 and so forth. Hopefully Piper will be able to discharged around day+30 or so and will be able to return home at day +100 or so. And will be cancer free still at day +365 and heading down a path of health. All of that is a long ways away and I will go mad and have a panic attack if I spend too much time thinking about all that is ahead. Sort of how I have a panic attack in my brain each time I have to park at the parking garage here which goes down a ridiculous 4 levels underground.

Today was typical of any experience with two year old, medical stuff, oh and Piper. She has been fighting off a cold for a while now...lots of snotty noses, some coughing and congestion. No fevers and each doctor who has seen Piper in the past few visits has agreed that it will pass. Of course, this morning after dropping Linley off with my mom and dad and unloading Piper and her paraphernalia we made it upstairs to surgery only to be told she had a fever. This began 2 hours of her being poked, prodded and checked out...only to finally watch the fever go away on its own. I know everyone was holding their breathe...the amount of work, coordination and detail that goes into preparing this transplant is amazing. One little kink, like an infection, can throw everything for a major loop. Praise God the surgery was a success and Piper joined us in the transplant unit a little before noon. She was pretty hungry and sleepy so after a lunch of tater tots, pedicure and pizza she took a 3 hour nap. Unfortunately because of not being able to eat this morning her zofran was missed and she threw up when she woke from her long nap. That was the turning point of the day because from that time on she was moving around the room, coloring and playing...mostly happily. Piper is especially enjoying using her double lumen lines as drum sticks on whichever solid surface is closest...silly girl. She will be in isolation in her room until the cultures taken from today clear her from the flu or other respiratory funks. Once those clears she will be allowed to roam the halls providing she wears her mask obediently. She will not leave this unit except for tests and radiation until she is discharged. Chad and I are able to come and go and guests who are healthy are free to visit but she will be slowly feeling worse and worse over the course of the next few days so that's not really appealing to most.

Pipers room is small but comfortable. There is a playroom across the hall once she is cleared to leave the room. The family lounge has an oven as well as the fridge and microwave. And the laundry room is around the corner. I think we will find ourselves adjusted just fine here. And thanks to the amazing generosity to many wonderful friends we have the iPads and FaceTime with which we were able to see sweet Linleys face this evening. I cannot tell you how incredibly great it was for all four members of this family to smile at each other...and make faces too of course. We are wild and crazy like that.

I've been asked a few times for the address here and Pipers room number. We love to hear from y'all so please feel free to send Piper cards and treats...she cannot have stuffed animals or fresh flowers or fresh fruit though so please keep that in mind for her safety.

Tranquilizers for mommy and beer for daddy would not be returned...just saying.

Piper Needham
Childrens Healthcare of Atlanta at Egleston
1405 Clifton Rd. NE Atlanta GA 30322
Room 3205 Aflac Transplant Unit.

Thanks for following us on this messy, tiring, grace filled journey.

Here we go...

The last 3 days have been so incredibly fast. Linley is done with school for Christmas, Chad completed his finals and the whole house let it a huge sigh of relief. We deliberately chose to not make plans but to hunker down at home...playing outside, watching movies and eating ridiculous amounts of ice cream. This is how the Needham crew attempts to freeze time. How we step back and remind ourselves that life is about to get oh so very hard again and wouldn't it just be nice to cuddle? ' Cause it is.

Finally tonight we ordered pizza and watched Toy Story. The girls had a bath complete with splashing and wildness.
Laundry was folded, dishes were washed, the fridge was emptied and the trash was walked to the dumpster. We were packing up and planning to move on out...not happily. Resignedly. We will do what we have to to chase Pipers cure. We have to, there is no other option but it aches my soul knowing what I am about to put Piper through. And Linley as well in a less physical but equally emotional way.

So here we go. The next step closer to a cure for Piper. Of course, sadly, each step closer to her cure is a st farther away from our comfort zone. A new hospital, new faces, new procedures and lots of new worries and fears and unknowns.

Tomorrow morning at 7:45am, Piper will have a CVL placed in her chest. She already has a port but they prefer to use a CVL and this new one will be a "double lumen" meaning it will have two lines to be used at any given time. After surgery we will be admitted and will be there at Egleston in relative isolation for anywhere from 4-6 weeks depending on how Piper does. Beginning on Tuesday (through Thursday)she will have twice daily total body radiation and beginning on Thursday (through Sunday)she will have high doses of chemotherapy intended to prepare her little body to receive the life saving cells of some amazing Eurpean woman. She will have two days off to rest before transplant day.. Pipers actual transplant will take place on the 28th. And that's when we begin to wait...wait for her body to receive the cells and pray for them to take over any cells she had left...hoping this leaves her free to begin her life cancer free. She deserves it...

This transplant come with so many risks. Both short term and long term. I have neither the time nor the desire to think about what could be on down the road. I just want the option to walk roads with Piper someday. Short term, there are many risks...things I don't want to dwell on but that I heard loud and clear when I signed the paperwork allowing them to attempt to cure my daughter. It is frightening.

Beginning tomorrow I will blog every day. Or I will really, really, really try. I cannot guarantee that it will be an easy read but Im sure it's not going to be easy to live out either. So of you are squeamish, pass on reading for a few months. And I will most definitely be saying shit more often...both literally and in the figurative " my life is really not rolling the way I had planned" sort of way. Can you deal?

Now that I have explained things and shown off that I know how to use curse words I will ask for some prayers.

1. Minimal side effects with maximum results.

2. That Pipers cmv levels do not cause more trouble.

3. That Piper fully engrafts...begins making her donors cells.

4. That Linley works through all of this...she has had some candid cries lately and I know she is hurting.

5. A lifelong cure for Piper.


And no matter what, I know that I know that I know my God is able to do big things....I hope that He does them in my Piper.

Details

In an effort to not become totally and frighteningly overwhelmed with what we have planned in the next two weeks I chose to ignore a lot f the details that I was forced to hear about earlier this week.

So far so good.

Unfortunately what I hide away always come back out and makes itself known.

I found this out today when I was laying down with Piper for her afternoon nap. She is doing fine, happy even...still, she has the cancer look. The tired and red eyes. The pale tone. The skinniness despite eating well and pooping normally. I make myself not focus on these details by covering her head with a pretty hat or throwing food at her all day but still the facts remain that within this beautiful child that I love so passionately is leukemia. It is hiding. It is going to be fought against with a vengeance but still it lurks and affects so much.

And when I laid next to her in her bed and she smiled at me and clasped her hands under her chin, as I do when I sleep, she broke my heart. I tried to keep the tears at bay because it's not the best thing for confidence boosting if mommy is lying prostrate on the floor sobbing like someone spilled my Cheerios. But still they leaked out. And continued to despite my best efforts of smiling and kissing. And she smiled and kissed me back but her forehead was furrowed and she was using her little fingers to trace the tears down my cheek. And my heart would not stop breaking.

So that was the cautious beginning of a breakdown that I surely deserve but have no time for. The appointments on Tuesday were just labs and meeting with Dr. Haight who will be one of the transplant doctors managing Pipers care. We also met with social work and a psychologist who was impressed with my families support system...which really is amazing. On Wednesday I begged my mom to come with us as we had appointments beginning at 7:30am and finishing at 3pm...everything from testing her liver, to meeting with child-life specialist, to chatting with the financial advisor, to an echocardiogram and completing this day with the frightening meeting with the radiologist. So much information and so much fear ...they are calling Piper a complicated case because she has had active CMV and because she is still not entirely disease free. Her lab work showed a slight elevation in her liver numbers so they have chosen to not give any more methotrexate or vincristine until she admits in an effort to have then heal before ravaging them. They are pleased that she is walking much more and that she is just so blasted good. And happy. And totally oblivious to all that is heading her way.

One thing that I found interesting from my meeting on Tuesday was that Piper, though she looks genetically common, actually was not an easy child to match for this transplant. I believe she had multiple options but for some reason or another they ended up with a match in Europe. Yep, Europe. The whole process is very, very, very private but we do know she is a 32 year old female. Hopefully this transplant will go as smoothly as possible and someday we will be able to get in contact with her and thank her for this amazing gift she is giving. Until then we just pray she continues to clear all the genetic and infectious disease testing. See, details that suck a person dry.

So now we continue to make big memories and take so many pictures. Irregardless of how successful this transplant is we will not have happy and healthy Piper back for a while. And Linley will not be able to love on, sleep with or boss Piper around like she should be able to...all in due time we pray. And we really, really, really pray for this to be only a dry, painful season that is followed by rejoicing and testimony.

Here we go.

My Facebook status this morning kindly requested that Monday not kick my butt. It didn't but it tried to wear me out, run me ragged and mentally suck me dry. Nothing catastrophic just the general busyness of running a home, raising children and oh yeah, curing cancer.

Well, I'm not. (curing cancer, that is)

I never finished college though I probably could cure cancer if I had a full night of sleep or two.

Part of the busyness of today revolved around the fact that tomorrow begins Pipers bone marrow work up...the few weeks pre transplant where they check out her little self and let us know she is strong and healthy and ready to proceed. Her first appointment is at 11:00am and it is just the same general labwork and physician consult...albeit with the team at Egleston whom I hope and pray are a fraction of as kind, helpful and hopeful as our team at Scottish Rite. After that appointment we will have a psych appointment at the same location. That one should be interesting since I'm not even able to get Piper to clearly express what she wants to eat for lunch much less how she is feeling.

Emotions, Smotions.

Nobody is getting any big feelings around here until all this is said and done and all those who desire hair are given beautiful heads of it.

Wednesday will be another day at Egleston, only it will begin at 7:45am and will be filled with multiple appointments all over their campus and in areas with names like Nuclear Radiology which just typing out makes me want a tranquilizer or alcohol. Or both. Also appointments checking out her kidney and liver and heart function. Tomorrow is also the day they plan to give me the consent form to allow them to pump horrible chemicals into my second born and then to totally wipe out her immune system and then, hopefully, to revive it being leukemia free. I cannot imagine signing this paper but I will because leukemia waits for no one. Thursday is yet again another trip to Atlanta but because we are wild and crazy people we will go to Scottish Rite instead of Egleston and see those doctors there for Pipers regular chemotherapy. I say "we" but mean "Chad" because I am taking the morning off before I begin to speak chemo-ease and not my typical run on English. And Chad has finals this week and next which really, just makes sense for how we tend to roll around here.

There you have it.

We are busy little people. I am attempting to keep my head on straight and am both ready for this whole process to be over with and still hesitant to even begin for hopes of a better, more optimistic option to open up for Piper. I am tired of making big decisions and knowing that none of this was ever on my radar a far as things I wanted when I was a grown up. I know that this is just further proof as to my huge, huge ,huge need to lean on God and his sovereignty and goodness regarding to my plans and hopes and dreams.

Really? Again?

Piper is a pooper.

Oh she's a sweet and cute pooper but she's a pooper.

She has had loose stools for weeks now but not like this. Ever since Mondays chemo she has been steadily getting worse. And worse and worse. Today alone I figured I have changed a minimum of 25 dirty diapers. And yes, her little bum looks red and angry but thankfully we have the most amazing stuff for that that we slather on every 30 minutes or every diaper change...whichever comes first.


Good times.

After changing 4 in an hour I called the on-call doctor to vent, er...get some advice. Because Pipers CMV levels are very low and she is still wanting to eat and play we are assuming it to be the results of Monday's chemotherapy. So now we have given Piper the first of a few doses of Imodium in an attempt to dry things up a bit. She has already lost about 2 lbs in the last month or so and we really need to have her as healthy and strong as possible before tranplant not withering away as she is at the moment. And she is supposed to have more chemo next week, poor girl.

Have I memtioned how much leukemia stinks lately? It truly does. I've yet to find the silver lining in this gray cloud and I am worn out just from the effort it takes to keep myself upright some days. Less poop would help me out a bit though if requests are being taken.