Tuesday, February 28, 2012

Homeschooling 101

Oh, who am I kidding? Two successful days of math facts and journaling and spelling works and panda bear facts do not a pro make.

But it was so fun. My Linley is a joy in so many ways and I feel like I have missed so many moments over the last 2 and a half years. While yesterday didn't wash that regret away it surely did remind me of how very much I enjoy her company and watching her learn and experience things.

We began with this weeks bible verse (psalms 139:14...a good reminder to us both) and introducing spelling words. After that was math fact speed drills and working on the differences between singular and plural. Linley especially enjoyed doing all of this in her Jammie's with music playing and mommy by her side...as did I.

After Linley completed those things we went to the St. Jude library and picked out a book about panda bears and a nighttime reading book about the ever famous Junie B Jones. We took the long walking way back to the car and headed to Kroger to pick up some groceries...it was Linleys job to write the list out as I drove and then to write the prices down as we shopped. Once our list was complete she added all the money up and we were thrilled to have spent 11$ less than what we had budgeted...and there's not much funnier than a 7 year olds face when they see how much money is spent at Kroger each visit.

We got back to the room starving and made sandwiches and cucumbers and bananas and talked about the plans for the afternoon which included her quiet time reading and journaling and then we played basketball for an hour. Once we were good and messyfied we came inside and cleaned up to go out for dinner with my mom who was heading up from GA to save the day/help mommy and daddy not loose their minds/love on her granddaughters.

We stayed out much later than normal but every minute of the day was lovely. Despite where we are and despite how stretched in every way our little family is, I chose to enjoy this time I have with each girl alone.

They are two amazing kids. I am so blessed with their individuality and spirits...and homeschooling 101 in my book will have to focus on that until we can line up this tutor to fill in the blank spots that this mommy won't notice in Linleys education.

At least I am certain that Linley will not mind one iota.

A million thanks for all the emails and calls in response to my tutor inquiry... We are going to narrow things down a little tomorrow when Chad and I have a few hours to ourselves thanks to Nana/wonder woman/my moms desire to keep both girls in the hospital room while we enjoy lunch.

(And things with Piper are going well enough, I will update more on her tomorrow as this post is about my Linley.)

Saturday, February 25, 2012

"Gods glory and our salvation"

JIts naptime here at St Jude. My sweet, rashly and itchy two year old is snoozing away next to me with her doggy nestled up against her chin. Perfect. Just as she looks every time she sleeps, except for the rash and itch of course. She is so beautiful. My Piper takes my breathe away each time I see her do something that should be so simple but instead is yet another visible fact that she is not living the life she should be able to...and this hurts me so very much.

Some days I get wrapped up in the Hope and possibliliy of a future Cure. I find myself laughing and forgetting that Piper has had leukemia for all but two of her 31 months outside my womb. I don't dwell on the fact that all the chemotherapy and steroids have robbed her of the ability to walk easily. That the treatments given to save her life have delayed her speech and created an intense fear of being out of the sight of her mommy or daddy. That should Piper respond to this treatment and should she beat the beast that is infantile leukemia, she is still at a heightened risk of other cancers and much less importantly, learning delays and growth issues due to total body radiation.

People often seem to think I am strong. That I am eternally optimistic.

And I have to tell you I am not.

I am eternally strong in my trust that God loves me so ...but every fiber of my being wants to curl up in a ball and weep. I hurt, like only a mother can, for what Pipers life has had to be. I hurt that the large, busy chaotic family I desired to conceive and carry and raise has never been. That Linley requests siblings but asks that they not have leukemia please. And that I know that despite what I want, I may never give Linley more siblings. And that I may not be able to keep the one sibling my body allowed me to have. And I do not understand and I am certain I never will.

How faithful is God going to ask me to be? With the chance of cure so very small and my heart loosing strength every day I find myself wondering where is His glory? Where is the miracle that I know He is capable of and why, oh why has God chosen to withhold it. It is such a difficult thing to look suffering and sickness in the face each day and only be able to love it the more. I ask myself over and over is Gods faithfulness going to be in the little things? The beautiful moments we have daily with both Piper and Linley or will He reach down and move this massive mountain in our midst. My physical ache to heal and love and nurture and keep my children is heard by my God...how good He is to be faithful to me when my fickle heart so often just wants to pout and demand my own way.

How can I stand to demand anything? Yes, Lord knows, I ache for a whole and healthy family but it's even the season in which I had neither that I felt Him the most. Despite how much this season physically and emotionally has hurt us all I must believe that being faithful to Him, despite how much I ache, will in turn support me and continue to keep me encouraged and praising Him.

Friday, February 24, 2012

Settling in at St Jude

Piper still has this wonky rash. The skin biopsy from Wednesday came back inconclusive, meaning it may or may not be GVHD. To which I say... Seriously??? So the doctors continue to be baffled by it and continue to say it looks more like an allergic reaction than anything but they can't rule out GVHD. Nothing changing there except it continues to spread and now covers her face. It's so very bad and she constantly asks to have her back scratched... Oddly, nowhere else on her body seems to bother her. Benedryl is her friend.

If you remember, Piper also had a Bone Marrow Aspirate done on Wednesday. The good news is that there was no leukemia found... Of course, there was no leukemia found because her counts are still bottomed out from the chemo right after her relapse. This is actually good though as it means the chemo did something... Hopefully lots of something. We are still awaiting the MRD ( minimal residual disease) results and the flo-cytometry results and oddly we hope they find leukemia hiding. If they do not, Piper will not fit the eligibility for this trial but thankfully/sadly Pipers leukemia is aggressive and surely will be found.

I have spent the better part of the last 3 days running from one appointment to another in an effort to clear my body and health as eligible to be Pipers donor... Both for the NK cell transfusion and for the Stem Cell Transplant in a month. Today I was given the "good to go" after my physical so unless something shows up in my bloodwork the day prior, I will be ready to give and even more ready to pray that this is effective.

Linleys is a trooper running with me around town. She loves all the evening activities they have downstairs at the Grizzlies House and enjoyed a ride with her daddy tonight in a Cinderella carriage downtown. While we are not doing formal school right now she is working on daily math facts on the iPad, learning the spelling words I chose this week and doing creative writing in her journal each night. We are still looking for a tutor a few times a week here in Memphis to work with Linleys wonderful teacher from home to keep Linley up to par. She is a smart girl and I worry about her falling behind... If anyone has a contact here please email me sus581@yahoo.com

We are loving our place at the Grizzlies House. It is equipped with 2 beds, a bathroom, a small living/eating area and a mini kitchen. Even better, they still daily clean it for me. What a huge blessing for this ocd/clean happy mom. Our room there is actually straight across the parking lot from Pipers room inpatient...we enjoy flashing the lights at each other at night and surely keep some security guard either nervous or smiling. Oh, and I found a Target so I officially feel at home.

Our biggest prayer requests after hoping for Pipers cure, is sleep and rest. We are very weary and attempting to adjust to life here in TN is exhausting... As I often do, I praise God that Linley is so wonderfully easy to be with, despite how hectic her life is now.

I will have a mailing address soon, to those who have asked for one. And a million thanks to those who have sent Starbucks cards to me via Facebook... You're the fuel to our day!

Thursday, February 23, 2012

The good, the bad and the ugly.

... Because you have to know that with Piper there has to be all of the above. The good is that my girl was great on the trip here. She watched Madagascar, she took pictures of the inside of the transport van, she played with stickers and she napped. The whole trip only ended up taking about 6 and a half hours and I was probably more uncomfortable and snippy than she was. (imagine that) Unfortunately , by the time she and I arrived at St. Jude she was one bored and grumpy kiddo... Only really perking up when her sister arrived to play with her and to share the pancakes Piper had begun asking for somewhere in Alabama.

Now the bad. Pipers temperature continues to run about 37.7 or so and she didn't sleep well last night. Her cultures continue to be clear but she is still neutropenia so the antibiotics continue. Her appetite is fairly non existing apart from small nibbles and sips of water throughout the day. She was NPO all through the night because of an early morning bone marrow aspirate, a chest X-ray, a EKG/echo and last but not least, a skin biopsy...

The skin biopsy is being done because Pipers rash is out of control. It now covers 75% of her body and looks red and angry. This is the very, very, very ugly I am speaking of. I cannot explain how frightening it is to see this all over her body and not know what it is or how to treat it. Dr. Leung doesn't seem to think it is gvhd or leukemia based but is still keeping a very close eye on it. He changed up her antibiotics as well as her steroid cream and feels confident that the chemo and NK cell therapy will continue as planned next week unless she worsens. I am personally praying for answers... A diagnosis will go a long way to helping. to figure out how to deal with it and this, get rid of it until all the chaos of treatment begins.

I am enjoying my time with Linley in the midst of many visits prepping and clearing my body and bloodwork for being Pipers donor. Today they took 17 vials of blood and I praised God that I am not easily bothered by this. I was informed of the procedure they will follow for both the NK donation and for the stem cell transplant... Neither of which I am nervous about but both of which I fervently pray to be successful.

At this moment I an so very tired. I would love to sleep all day but Linley and I have appointments beginning at 7:30am and running all day... Big plans to visit Piper at some point and big plans to find a grocery store.

I wanted to tell everyone that we are being flooded with notes, emails and calls... Please know I read each one but am running through the small amount of energy that I have and am thus, falling behind on responding. Please know each gift, prayer and well wish is heard and felt and most of all appreciated, despite my slow rate of acknowledgement.

Monday, February 20, 2012

Transporting two year olds: probably not fun.

Piper and I are being quite the modern family sitting here in her room at Egleston. She is happily watching yo gabba gabba on my phone and I am able to update this lovely blog and still cuddle...thankfully Piper continues to feel wonderful. She was thrilled to see me and cheerfully waved her daddy put the door and off to Linley. If not for Pipers surroundings I would be able to forget where we were and the ugly truth of what we battle against.
She continues to keep her fevers down though not in a normal range but there have been no spikes and thus, no tylenol given. Pipers rash is worsening and I am attempting to not be concerned. Graft vs host disease can be a serious situation and I am fearful of dealing with it beyond it being a bothersome rash to Piper...Dr. Chiang doesnt want to begin her on steroids as it can compromise her eligibility at St. Jude's and that is the ultimate goal at the moment. And Pipers cultures grew something which means there is or was, an infection in her little body. They havent gotten the sensitivities back as to what it is but she continues on antibiotics and we are hopeful that will fight for Piper until her counts begin to rebound from last weeks chemo and before next weeks preparation of treatment.

With all of these fancy complications my sweet Piper is rolling around with, we are unable to be discharged to head to St Jude. They would rather have her medically transferred so tomorrow at 9:00am the St. Jude transport ambulance will be picking myself and Piper up and we will begin the 8+ hour trek northward. When I inquired as to how exactly one goes about transporting a two year old in the back of an ambulance there were talks of gurneys and 5 harnesses and I am fearfully confident that they don't mean a 5 point car seat harness...I imagine we will find out soon enough. In the meanwhile I am downloading many movies and books to the iPad and I packed a big bag with snacks and games and other things to keep meltdowns to a minimum.

Here's hoping Piper will be able to hold herself together as well. :)

Chad and Linley will be close behind the transport and hopefully we will be able stop as often as our nerves require. At this moment Piper is still quite awake although I am quickly fainting. Despite how tired both Chad and I are in this moment and all others, we both know there is quite a fight up ahead. Busyness and worry and exhaustion will soon be a part of our daily world, even more so than it is now. None the less we remain hopeful that this is the cure for our girl and we are gearing up for the necessary trials to come.

Mainly we are confident in the direction God is guiding us and we are so very blessed to know this God who leads our every little step.

Teeth, fevers and this place called St. Jude

It is currently 1:47am and I am only just now slowing myself down enough to settle into this lovely bed of mine. Next to me is the lovely Linley who lost her first tooth today and found herself over the moon with pride... As was I, only I semi cried because between holes in her smiles and bangs on her forehead my sweet seven year old looks like quite the young lady. Babyhood and toddlerhood have left her and I miss the moments where I was needed so very much and loved so loudly but I see little glimpses of what she will be like as a woman and I rejoice with hope for her.

She makes my heart happy and my soul smile.

As for her younger sister, she is snoozing away with her daddy at Egleston after spiking a fever this morning and requiring a (hopefully) short stay. Should she stay fever free she will be able to be discharged and we can begin to roll this family of four northward... Towards St. Jude and what we pray will be the cure we have sought most of her young life. Despite having a fever, Piper remains happy. Perhaps not normal but we have a very odd normal in this family and because so much of her time is on chemo and/or recovering, we tend to take more notice of a joyous Piper than we do of a quiet Piper. She has begun taking short steps alone once again and while her little legs are most definitely weak she swells with pride as we cheer her steps from the couch to the wall.

She also makes my heart happy and my soul smile.

This family is still Memphis, TN bound this week and praying this delay turns into nothing. When Pipers fever spiked this morning, my husband looked into my eyes and saw that I had nothing in me to trek to Atlanta when I was ( and am) so very weary. He offered to take Piper and this allowed me, with the help of Hannah and Miriam plus a slew of cheerful visitors, to unload the Camry and do the majority of the reloading and cleaning necessary to move out of town. I currently have very low standards as to the appearance of my home but at the risk of becoming a spazzy (or spazzier) mother with a twitch and wildly gray hair I must focus on the details and not the dried up shredded cheese in the corner of the living room or whatever experiment Linley is developing in the bathroom sink...it all kind of makes me smile because what else are we attempting this thing called a cure for if not the chance to raise these children and the beautiful messes they bring?

And as I attempt to ignore the chaos that is my home for the excitement of this new chapter, I am reminded of how amazingly loved this family of mine is. By our church as well as other church's locally, by our family both near and far, by Linleys school and her support system there and by both friends and strangers who have showered us with love and prayers and gifts and money and at the very core of it all, with the tangible love of Christ.

We feel the support and we praise God for each and every one of you who chose to walk with us. As you have each been so very faithful to hold us up I thought of one of my favorite quotes I roll out when I feel overwhelmed and/or out of control and need God that much more because of it.

"I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.” (c.s.lewis)

Friday, February 17, 2012

Sevenly is Heavenly

Today my big girl turned 7. And at the risk of being one of those women who constantly talk about days gone by...well, they really are flying by. So much of the past few years have been snippets here and there of hands on parenting of my Linley and I have missed many more moments than I ever wanted, but thankfully the girl keeps on getting better and better and better.

Although apparently she is already almost 17 now that she's turned seven years old. Not sure quite how to explain that one to her since she is good at math but apparently has a greater than normal imagination.

She's a silly one.

Linley requested oatmeal with sprinkles for breakfast and I agreed to keep the carrots out of her lunch as a sign of love. Dinner was pizza and she finished off the night curled up on the couch with me and Piper and watched Annie. Because it was a school day she was gone but I was able to visit her class and bring the microphone cupcakes she wanted and even was able to read to her class when we went to the Library.

Mothering Linley has always been a joy. She is possibly the most enjoyable little girl out there and I often watch her as she sleeps and wonder why I am so blessed. She is learning her boundaries and learning the time and place for sassiness. She is a advanced reader and she is working hard on math facts. She loves to veg on the couch and watch movies but she can hold her own on the skating rink. Linley chose earlier to follow Jesus and we have seen a sensitivity to correction and guidance since then. She now has bangs and despite her smaller than normal stature she looks older somehow. She is still happy to hold my hands and will eagerly curl up to me if she catches me sitting still. Sleepovers are often requested and we have had our share of them this year as yet another sign that this girl of mine is growing up.

Linley is as amazing today as she was the day I delivered her. I love her with that simple adoration reserved for little girls. Each day and each year that passes gives me little glimpses of the woman she will be and I praise God that I have a hands on role in helping to shape her into a Godly woman who is confident and strong and gracious.

You are well on your way to being 17 my sweet Linley Coe, but please don't forget to love seven a little on your way.

Thank you for making me a mommy and know that no matter how much you believe I love you, there is a God who loves you even more than I ever could. You're a blessing to me.

Thursday, February 16, 2012


New plans, old plans... Im learning each day to be flexible. And no, I don't like it. For once in my life I must say that I am craving security. I want a house with well worn paths through the living room, a garden where the same flowers bloom each spring, a dog that my girls can hug at night when they curl up on the couch. Each morning I want my biggest complaint to be a lack of sleep due to a pinterest addiction not the multitude of needs that revolve around a child dealing with cancer... And definitely not a child who has exhausted all traditional modes of treatment.

No thanks.

I dream of stability.

Meanwhile I am attempting to wrap my brain around the fact that this leukemia is as aggressive as it has proven to be. That we have been told to take her home and keep her comfortable and love her. I'm not ready for that...none of us are. Piper is well. She is not entirely herself but she is a long way away from succumbing to this beast.

And for that reason we are heading to St. Jude. Chad and I had a phone consult on Tuesday with Dr. Leung and it went well. Because this is an active clinical trial he cannot tell us facts or statistics...he was very clear though that the study has been active for 3+ years and if success were not prolific it would have been shut down a long time ago. We were concerned about Pipers large amount of disease but he was emphatic that this study was geared towards children who have had three, four even five relapses. They do not use huge doses of chemotherapy because well, it didn't work the first two times and that goes for radiation as well. Pipers actual hospitalization time will be minimal which will allow for time as a family and normalacy. And the age policy at St. Jude is seven unlike the 12 at Children's...another way that Linley will not be excluded. Because this protocol is very different than anything we have ever tried we are optimistic once again...

Did I just say I was optimistic?

Have I forgot the hellish turn my role as a mother has taken lately?

No. But it's difficult to not feel the hope they are doling out up there at St. Jude. Also, we have no other options...none. And I really am not okay with watching my daughter die without this last attempt. I'm not... So we go.

We will leave on Monday. Hopefully, all that this family of 4 will need for moving three states away for anywhere between 3 to 5 months will fit into my Camry. Hopefully, Linleys school will be able to work with us as we attempt to keep the girls and this family as physically together as possible. Chad is working out the details of dropping his classes at UGA without penalty and we are still in the process of choosing what to do with this apartment of ours which will be vacant the majority of the next few months...Chad wants to keep it and I want to let our lease go and save money and hassle. We are hoping that details work themselves out for the simple fact that we are running on empty.

For those of you who do not know about the NK cell therapy it is a way of using my natural killer cells to fight off Pipers leukemia when given to her in large doses after small amounts of chemotherapy. She will receive this and then shots to keep the NK cells active and fighting while we await her stem cell transplant. I will be Pipers donor and thus this upcoming week will be busy for both of us undergoing tests and such to ensure us both are in well enough shape to proceed. While optimism is renewed we are cautious...

Too many times Piper has done better than imagined or expected and yet, here we are. Its tough to not be overwhelmed with the whys and how's of the next few months but at this moment I an only feverntly praying we will have more months with Piper. That this will be the Cure that she deserves and needs so much.

Prayers are coveted. The decision has been made and we are at peace with it...that does not mean that it will be an easy process. As before, we will make it day to day and a step at a time and hopefully, prayerfully we will help Piper achieve her cure.

I really would love to have time to work on my pinterest addiction a little more, after all.

Tuesday, February 14, 2012


Today at 3:00, Piper will complete her last dose of chemotherapy and will be leaving the hospital. Chad and I have a 5:00 phone consultation with Dr. Leung who is heading the NK cells clinical trial at St. Jude. We have a variety of questions regarding their treatment and Pipers care that we will be asking him before making the decision to continue seeking this thing called cure or to bring our girl home and enjoy the fabulousness she is.

Our biggest fear is making the "wrong" decision, though in my heart I know we are seeking God and in the there cannot be anything except His peace and direction. Please pray we feel those two things. And please do pray for that miracle that God is so very capable of... I ache to have Him use Piper as a testimony.

For those of you who cannot see mu Piper... She is very much still the girl she was last week. She is happy and is totally oblivious to the worry surrounding her. More than ever I am praising God that Piper never seems to be symptomatic. Her blasts are dropping as her white count responds to the chemo and I imagine that is helping any pain she may have had when she relapsed.

It is because of Pipers healthy demeanor that I am struggling with correlating the beast in her body with the beauty she resounds with. Only Gods clarity will ever help us decide this horrendous of a choice.

Saturday, February 11, 2012


Three days ago I left the clinic after a routine visit with my Piper. While it was a long visit there was nothing out of the ordinary brought to my attention so she and I went for our daily drive around town. Piper and I both look forward to these drives and look for buses to follow, for birds to sing to and for a myriad of other things that are out of her usual spectrum...she loves to hear music so we have been listening to alot of Jesus Cultures Awakening album lately.

This was the day I heard her singing so sweetly and cheerfully " Jesus, Jesus...I love you" in the backseat with her little eyes closed above her big sterile mask.

This was also the day I was feeling almost giddy. Everyone I was running into was so impressed with how amazingly my daughter was doing...how could I not get wrapped up in the excitement and optimism that was filling up each conversation and thought around me? So while I enjoyed my Starbucks and Piper enjoyed her fast moving view, I listened closely to the lyrics of Glorious. I found myself moved by the encouragement I was hearing and today I found myself weeping with same lyrics for the simple fact that the truths in the songs had not changed.

Our circumstances and our perspective was significantly more difficult and I am finding it hard to feel giddy about much of anything given how broken my heart is, but the truths, Gods truly glorious truths still reach the ache my soul feels. I was reminded last night by a friend that I need to surround myself with what I know to be true of God and His character and what He has proven Himself to be. These lyrics calmed me. Gods glorious truth has not changed since Wednesdays giddy drive around town...He is holy, He is worthy of my worship despite the deep sadness I feel towards the plan I see unraveling before me. And ultimately He is so very, very, very good to me.

Hope fills my soul
The love that You've shown
Bring refreshing like the rain
Peace floods my heart
I've known nothing apart
Apart from Your goodness, God

You are glorious
You are holy, holy
The heavens shout
You are worthy, worthy

Your love frees my soul
And fear has no hold
For You have broken the chains
Now joy fills my life
Your Spirit, Your Light
I'm undone by the kindness of Chirst

You are glorious
You are holy, holy
The heavens shout
You are worthy, worthy
My soul cries out
You are holy, holy
The nations will shout
You are worthy, worthy

At the sound of our praise
The Heavens will shake
And the earth will move

As far as the ugly detail surrounding this, Pipers second relapse, I have few. She has been admitted to Egleston for 5 days of chemo in the slim chance that we can get the blasts found in her bloodwork down. She had a bone marrow aspirate and they found her marrow compacted with 89% leukemia...this from 100% donor cells on day 30. Her peripheral bloodwork has risen from 11% blasts on Wednesday to 38% on Friday. Pipers leukemia is not only back but it is angry and aggressive. At this point we have a few options, though none are being shared with us with much optimism. Because we chose to attempt this last chemotherapy, we are open to the option of going to St Jude's for the Nk cells therapy clinical trial. I have spoken with them and Piper fits the criteria and they are very willing to take her on...Unfortunatly in order to be a part of this study she must be 60 days post transplant. Piper is only 45 days post transplant and at the rate it is taking over, she would not make it another 2 weeks to get to St Jude, thus the chemotherapy in the interim. If this round does nothing to the blast we see in her bloodwork we have exhausted all known options for a cure. We are given the choice to go home either on oral chemo to prolong Pipers little life with as few symptoms as possible or we can go home and allow this beast to consume her.

While St. Jude's has apparently been successful with some patients in doing this Nk cells therapy, we are unwilling at this time to chase down rabbit trails. I will have a phone consultation with Dr. Leung about the details a nd I am going to be asking him for serious consideration of Piper and the magnitude to her disease. We have no desire to lose our second born daughter of whom we have fought tooth and nail for but we also will not continue to put her through more and more suffering just to lose her in the midst of that. In light of the options we have, we are asking for fervent prayers. No parent ever imagines their self in this position and for 2 and a half years I have allowed myself to hope we never would have to.

We are here in the midst of gut wrenching descisions and choices...there can not be two made, we have to weigh the odds and the costs and hope with every fiber in our being that we will never look back with regret.

Wednesday, February 8, 2012

Relapse. ( day 42 )

Piper has relapsed.

After hearing that she was 100% donor cells on Monday as well as clean bloodwork in the lab that same morning, we had begun the process of dreaming and wishing and hoping. Now we are back to sobbing, aching and questioning.

Why sweet Lord, why.

Piper had her unusual appointment this morning at the clinic for the IVIG sensitive to her CMV and as usual, they drew labs. We were there for 5 hours and I was never told that she had suspicious labs until I was called this afternoon and told that they had sent the suspicious cells out and the results were indeed, leukemia. Again. Dr Haight asked if I minded if she came to the Ronald McDonald apartment to talk and just be with me and then spent the next hour explaining options, choices and tests that will be run to see what exactly we have to deal with. Irregardless of the details this is a bad situation for Piper to be in... Each relapse and subsequent treatment just makes the leukemia more resistant to treatment and less likely to be cured. Best case scenario is little blast in her marrow and none in her central nervous system and worst case scenario is many blast as well as central nervous involvement. Either way, Dr. Haight has begun the process of asking other specialist if there are more innovative options.

I have had a lot of people ask how this can happen if she is producing donor cells and not Piper cells and the answer is that I haven't a damn clue. I do know that leukemia and cancer doesn't play by any set of rules or sense of fairness... I have seen this. I do know that she has done everything so incredibly well and that this even has shocked her transplant doctors who rarely see this themselves. Neither of those things bring me any relief at this moment as I attempt to wrap my head around the fact that my 2 year old still has cancer in the midst of her sweet little body... Still, after two years of chemo, after 6 rounds of total body radiation and after destroying as much of her own marrow and cells as humanly possible at one time and filling her back up with cells of another healthy woman...somehow, leukemia invades.

This is all we know now. Tomorrow morning Piper will be sedated and will have a bone narrow aspirate as well as a lumbar aspirate as well as another blood draw to check her chimerisms again. These results will tell us what Piper is eligible for as far as treatment, if anything. At this time, they are beginning to wean her off of the cyclosporine (immunosuppresion) in hopes of slight GVHD. Unfortunatly GVHD can be fatal if it affects the major organs. Within a week we will see if there is any concern with that. Dr Haight mentioned going back to the donors cells they have stored and using quantities of the T cells to infuse Piper. These T cells are the big guns as far as infection fighting cells and the hope is that they, along with the already existing donor cells, will siege war on the leukemia cells present.

There are no plans at the moment to readmit to Egleston. This has been a blessing as each prior diagnosis and relapse was confirmed when we already were settled into a room in a hospital. This time around we stayed home and my family and best friend came and surrounded us. Piper loved the attention and the entire evening was a nice distraction from what we are walking into now.

Of course, being home(ish) meant feeling the full affect of the emotions rolling in my heart and head. After talking with my almost seven year old I was cuddled up with Piper in bed. So normal and so sweet and so incredibly gut wrenching. She asked for her back to be scratched and while I slowly ran my fingernails down her back, I cried. I cried out of a lack of big hopes and I cried for disappointment. I sobbed knowing we are nearing the end of treatment for my youngest child, baring a miracle and I ached because I love this child with a fervency that both frightens this mommy and settles my soul...she was given to me and she may be taken from me but she will never cease to inspire me.

Tuesday, February 7, 2012

Good, good, good news

Yesterday was Day 40 post Pipers bone narrow test. She had her morning clinic appointment and all of her labs look beautiful. She is still off the diflucan because her liver numbers were slightly elevated and she had her dose of cyclosporine upped a little. All normal things within the realm of destroying her own bodies bone marrow then injection her with someone else's...

And Praise God, the chimerism test came back as 100% donor cells! This means that when they looked at the DNA within her cells, they saw none of the DNA from pre transplant and only those of the donor. This is amazing.. And exactly where the doctors want her to be...

Dr. Haight stopped by to say hello (methinks she digs this little two year old of mine) and was impressed with how spunky and smily Piper was. She made mention of how they had expected more complications from Piper and were thrilled with how well she has come through. My Piper is incredibly tough and if Dr. Haight thinks that she is impressed...well, she should be, but Piper is not done impressing everyone.

When the nurse practitioner called me yesterday afternoon and told me the results of Pipers chimerism test, it was all I could do not to fall on the floor and weep. While Piper still has many days and visits and tests to be declared Cured, it is wonderful to hear that she is finally on top of things. I, after many long and heavy weeks, have begun to once again cater to the idea of raising Piper... It is a joyful thought and I ache to keep it close.

I may or may not have knocked on the door on a fellow leukemia survivor and enjoyed a cup of champagne in celebration with her mother.

And it was so good.

Please continue to pray that she drinks so she can come off of her nightly fluids. Also that her CMV levels continue to drop as they have been. And that she stays so very healthy... I look forward to rejoining the public but unfortunatly that is many days away. We also are having Serv-pro come out this week and checking out the apartment for mold, mildew and anything else that would be problematic for Pipers health and homecoming. Hopefully they won't find anything because I don't know that we Needhams have yet another move in us... I believe 3 in the two and a half years since Pipers diagnosis has been suffice.

Sunday, February 5, 2012

Reunited and it feels so good (day 39)

That totally applies to this family and this weekend. For 47 nights these girls have slept without the other. For 47 days these two have played without the other and for the 47 long days that they lived without the other they never ceased to ask for their sister. Chad and I have shared a bed only once in all that time and frankly, families of 4 should be together more than what we have handled lately...but progress is being made and I will take it.

Once they saw each other the girls spent the weekend playing baby dolls, coloring and eating. Always lots of eating in this place. Piper wants to do anything and everything that Linley does and Linley was the ever patient big sister...basically all Chad and I did this weekend was watch them. And smiled. Cried quietly and discreetly. Held hands and rejoiced that the girls ever got to be reunited.

Because Piper continues to be on a modified isolation, we were very limited in what we could do beyond the 4 walls of this apartment. She is required to wear a mask every time she leaves the room and she cannot be around groups of people anyways. We took a walk but couldn't stop to eat because that would require Piper to take her mask off outside to snack and it's much too early for all that. So we loaded the girls up and a pile of yummys and packed into the car and took a picnic drive...you must know that Atlanta has some amazing little areas. Music on, masks off and giggling girls whom chose often to just reach over and hold hands...melt this heart.

While Chad and I were beyond grateful to be together as a family of four we eagerly took my parents up on their offer to watch the girls while we went out for dinner. Right around the corner from the Ronald McDonald House is a cute little area with restaurants and coffee shops and even a Barnes and Nobles...so Chad and I much enjoyed a dinner out, followed by picking up some diapers just so we didn't forget what we really love and live for.

I am thankful. So very thankful. I find myself often just plain thanking God for His goodness...though I lack the correct way to beg and ask Him for my daughters life. My prayers are made up of pleas for His mercy. They are filled with an ache for Gods grace and though I cannot yet bring myself to desire His will without my own recommendations for how my life should be...I know and trust that whatever He has in store will be infinitely better than what I think I need.

I really hope though, that He is healing my Piper...and by doing that that He will begin to heal my family and the dreams and plans and desire that we simply have no time to focus on at this time.

Thursday, February 2, 2012

Settling in once again (day 36)

As I am less tired tonight I hope this post sounds a little more confident and less sleepy. We had today free from clinic visits so it was wonderful to spend the day setting up a schedule and learning the ropes and such. Pipers medication list is long as are her CVL infusions but now that we are on the 3rd night here I do believe we have things on a roll. Just putting on regular clothes in the morning verses wearing our pjs makes the day a little less sluggish as does lots of walking the halls. Piper has snacked her way through the whole day... black olives, Mac and cheese, nerds candy, sliced cheese, baked potato, buttered noodles, banana with pb on it, pancakes dipped in syrup, sausage patties and marshmallows. Granted, most of these things were only nibbled but I am thrilled with her desire to eat...if only she would drink more than sips of water. I can tell we have watched a lot of Curious George because the girl walks around saying "George? Where are you?" just like the man in the yellow hat does..melts my heart. While Piper is inpatient she often falls asleep to a movie but at home it's not an option. Because we are in a home setting I have returned us to the regular schedule of books and cuddles and then a kiss goodnight. Of course she is still up to 10:30 because of various CVL access I must do but still it works for us. Piper even requested to sit on the potty twice today and I swear if this girl learns to walk and potty train post a bone marrow transplant I am going to be amazed.

Medically she is still doing great. No news yet about her chimerism testing but her counts are doing good things. Pipers CMV copies dropped yet again down to 2,200! This is wonderful news and I praise God for it. Hopefully this trend will continue and we can move Pipers antiviral from IV to oral soon. Tomorrow after a morning clinic visit we will have an afternoon guest and then tomorrow night Linley and Chad will be here for the weekend. This weekend I plan to go get a pedicure with Linley and work on Valentines while Piper naps with her daddy.

Throughout this long and nicely mundane day I have stopped and felt an overwhelming sense of rightness. We are many days and many tests away from having my girl cured but to have come even just this far is a blessing that I cannot ignore. Piper has the chance to beat the cancer...too many other little ones that I know were never given the option and won their fight in an entirely different way.

Wednesday, February 1, 2012

Day 35

And Piper is a free woman. Well, free-ish. She will still be closely monitored at the clinic every other day but apart from that she is on her own schedule and doing her own thing. I wish I could say we can get back to living a normal life but the fact is that she is not able to go anywhere but our apartment here at the Ronald McDonald house and to the clinic. And even in the journey between the two she is required to wear a mask and has learned to keep her hands to herself...thankfully, she is super obedient about these two things.

Piper was incredibly ready to leave yesterday. She happily put on the new outfit I snagged from the clearance rack at Target and requested her mask and out the door we went. The drive to the Ronald McDonald house was sweet as she pointed out the birds, the trucks and all the little things she has missed after 44 days of being isolated from every aspect of the outside world. She's never been so excited to be buckled into a carseat.

It was 8:30 at night before the home health nurse came and showed me how to hook Piper up to her night time fluids and her IV gancyclovier. I cannot think of the time I was more tired than last night after attempting to remember all the details and schedules that are now my sole responsibility. All of this is more than a little overwhelming while juggling her medications, creams and fluids while still encouraging her to both eat and drink throughout the day. So while I am thrilled to be on our own, I have a renewed sense of appreciation for the nurses who do all the hard work throughout each day.

Today was Pipers first outpatient but clinic visit and it went well. She is still showing many signs of stranger anxiety not that that is much of a surprise. Thankfully, this visit was fairly simple and the only thing to bother her was the removal of her NG tube...we will be attempting to have her eat enough to maintain and if not by next week we will restart the feeds at night. Today she snacked all day long but time will tell whether it was enough or not. Her liquid intake is very low, thus the overnight fluids, do please pray she begins to feel thirsty and that she will restart the drinking of her pediasure as she did before transplant. Pipers liver numbers were elevated today but it is supposed to be a common problem with the diflucan she is on do that has been stopped for a little while. Her cyclosporine levels looked great so we will continue at the dose she is on now.

Please continue to pray for Pipers body to be producing donor cells as well as her fluid intake. And rest...please pray for some for both of us.