Today

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.

"Glorious"

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.

Glorious

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.

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.

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.

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.

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.

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.