"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.

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!

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.

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)

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.

Plans

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.