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.


  1. Full steam ahead my friend!! We do not know our Father's good hidden will, but we do know that His revealed will is for us to petition Him in all things ... as long as today is today ... we can hope in Him and keep praying like crazy.:) Been reading up on NK- truly amazing stuff God lets us humans discover.

  2. Praying like crazy for your family!

  3. Sus,
    I don't know if you will remember me or not but I will never forget the day you came up and introduced yourself to me in the GAP! I immediately came home and pulled up your blog and have continued to pray for your precious family ever since then. I am embarrassed to admit that I have JUST now figured out how to actually subscribe to your blog so I can leave you messages (you are probably thinking. . . oh, maybe it would have been better for her NOT to have figured that out! Hee hee!). . . all my failed attempts and now I finally am "in"! In all seriousness, I weep everytime I read your blog. I don't even know what would be the most comforting thing to say to you. I've been through so much of what Piper is going through but as the patient. . . not the mommy. My heart breaks for you. . . the pain that I can only imagine you are going through. Your continued optimism and your strong faith is truly amazing. I want you to know that even though I have only met you that one time in the mall, you and your precious family have held a special place in my heart. I love you dearly as my family-in-Christ. I have poured my heart out to God, pleading with Him for complete healing in Piper's life. As you said in one of your posts, we know God has the total power to heal Piper. . . this is my constant prayer for her. I pray that God will strengthen and sustain you. That He will fill you with His supernatural peace and joy. . . that in spite of all you are going through, you will continue to be a light to everyone you come into contact with. . . I pray for your marriage that God will keep it strong, that you will grow closer to each other and will lean on Him together. I pray for precious little Linley. . . that Christ will calm her fears, that He will protect her heart and that He will hold her in His loving arms and comfort her, as only He can do. I pray for Chad. . . that God will uphold Him, give Him the strength and endurance to lead his family. . . that he will be able to comfort you and hold the family together. I pray that he will keep his eyes fixed on Jesus and that his faith will not waver. I then, of course, pray for darling little Piper. I pray that she will continue to keep her sweet disposition. . . that she will be shielded from fear. I pray that Christ will touch her little body, that His blood will cover her and fill her. . . that her blood will be purified and made brand new. . . that not even one nasty leukemic cell will be left hiding anywhere in her body. I pray that her body will be protected from any negative side-effects and that Piper's response to this new treatment will amaze all who come into contact with her. I pray for wisdom for her doctors and nurses. . . that everything will be thought through carefully and that she will receive the very best care she could possibly receive. I pray for safety as you travel and that God will bless you with sweet conversation and a good trip. I pray all of this and more for your precious family and will continue to lift you up to our sweet Heavenly Father. Hang in there, Needham family. God has a special plan for your family. Love in Him, Jena Cabaniss

  4. Abby Boone's aunt, Leighann, told me about your precious angel, Piper. I have so many questions to ask God when I go to heaven, not that He has to answer them, of course. Now another one will be, Piper. I don't get it.

    Your daughter is a special gift. Cherish her smile, her smell, her emotions and her love. Surround her with every happiness you can muster. As I pray for Piper I will also pray for the hearts that love and adore her.

    May today be blessed.
    XXXOOO Beth Ann Rossi

  5. Praying from the UK tonight. So glad you have found a glimmer of hope - a tiny bit can go a long way. Praying for God's closeness to all of you, for guidance for every decision and that the hope becomes a reality. Please God, let this just be a story that Piper gets to tell people some time way in the future.

  6. Needham family,

    Thank you so much for sharing your journey with us. We have a son who is 27 months old and was diagnosed with Leukemia last July. Thankfully he is in remission right now but my heart continuously hurts for your family and other families who are battling this horrible disease. Little Piper looks like such a sweet, happy little girl and I really appreciate your updates, as difficult as they must be to write. We will pray that the treatment at St Jude's works and that your family can adjust to yet another type of "normal" in your new surroundings. Hang in there - You are constantly in our thoughts and prayers!

    Nick, Jamie & Cohen Museousky
    Wichita, KS

  7. Came over from sweet Emily's blog. We are, are you ready for this, we are the Needham Family!! Can yo believe that? In addition to the same last name we also have a little warrior girl, Zoey Grace. She is nearing her 5th birthday and she is nearing 3 years out from treatment from AML leukemia.

    We just wanted to stop by and lend our thoughts and prayers to your fighter girl and the journey you all are about to embark on. Our 8 months on our oncology floor gave us more than a glimpse of the path these children often are so unfairly ask to follow. But we have also seen the incredible resilient and courageous spirits, encased in the most tiniest of bodies. Their strength and perseverance, despite circumstance, never ceases to amaze. one only needs to spend a short time on an oncology floor to see just why, these children are true warriors. Heroes in the truest sense of the word.

    The Needham Family from California, are keeping the darling Piper close to our hearts and in our prayers. As well as the rest of you, sending you all strength for the journey.

  8. Came over from Emily's blog. We're praying for your family to be strong through this, and for Piper's cure! Sending up lots of prayers in central IL. :)