Monday, October 31, 2011

Day 25 of 28

Only three more days until this round of chemo is completed. Once Wednesday passes and Pipers counts begin to improve, we will be hitting the ground

I found out today that St. Jude is pretty packed. There is the hope to be in there the end of November but this is only further proof that we really have no idea what the next step will be. We know what we want to happen...but no movement yet. I have no idea what plan B is. Please pray for the doors to be opened and that Piper will find her place in their studies

Piper is doing well. She continues to have fevers at night but all of her cultures are still clear and good. She has a rash that moves about her body, sometimes coming and sometimes going...its so very odd. Hopefully it is only the sorafenib but it will probably be biopsied when her counts recover to rule out something bacterial if it is still present. No mouth sores or diaper rashes apparent, thankfully.

She still has an ANC of less than 10 but she had some pretty achy legs this morning and they are thinking it could be her counts coming back up. When that happens its not uncommon for kids joints to ache and be sore. Lortab this morning got her back in shape and running the halls. Still nibbling a bit but no real appetite to speak of.

Piper has officially lost her hair. Within the week that she had the last of her hair shaved off, we are beginning to see a little bit of regrowth. Its so soft and downy. I remember well how victorious I felt when Piper had her head of blond hair and no leukemia showing in her blood work. I ache to see her the way she was before she relapsed. While I know well that this is only hair, in our situation it is a big milestone and one that I pray we can quickly achieve again and permanently.

We are all growing tired of fighting this, of being apart from each other, from planning for days not weeks, of pull out couches and cafeteria food, of wondering what will happen to this family that we have worked so very hard to put together.

Its not uncommon in this lifestyle to be told "God wont give you more than you can handle"...I think this is ridiculous. Of course He will. And has. Otherwise I would not need Him and these days I need Him more than I ever have, although I cannot help but wish I were able to softly lean on Him not find myself clutching at Him and sobbing.

Wednesday, October 26, 2011

Day 22

Monday evening Piper began to run a fever. This is not uncommon when she is neutropenic and is actually the reason she is kept in the hospital until count recovery. Literally in the course of an hour she went from normal to 39.4 (103 degrees) and shaking and chills.

The problem is that Monday was the day Pipers port was supposed to be reaccessed, they do this weekly to keep infection at bay. So the nurse had agreed to deaccess Piper that morning so she could have the day free and hopefully get a bath before re accessing her later that night for fluids. Unfortunately we didn't know that Pipers platelet count was lower than they normally transfuse at and the last time Piper was reaccessed with low platelets she bled out for over 3 hours while they rushed platelets. It was horrifically scary.

The bigger problem was that with a fever she can easily become septic with no counts to fight off infections or viruses. And they cannot give Tylenol or antibiotics to combat a fever until after they have a true blood culture to run. And they cannot receive blood without re accessing her port which would almost definitely bleed out.

Oh, and there were no platelets available in the state of Georgia for her A- type.

And they had no idea when platelets would be available.

I tried not to freak out.

(not very well, but I get points for trying)

And then just as (favorite) Nurse Jaime began to clean Piper up to be accessed to get cultures, (favorite) Nurse Alyssa popped her head in the door and said some had just been flown in from Charlotte NC.

Just for Piper.

So she was accessed...she bled a bit...they rushed the platelets...and all was well.

(And mommy kicked herself for not keeping small bottles of wine in the room)

Since then her cultures came back for, wait for it, "gram positive cocci in chains". Yep, that's what they told me. Apparently that probably means something in the strep or staph family which sounds scary but her cultures from the very next day were already clear so whatever is causing the fever is at least responding to the antibiotics.

Piper is still having fevers but she bounces back quickly after given Tylenol and she is nearly her normal busy, bossy, sweet self. She will continue to be on the IV antibiotics for about a week which is no biggie since we are snuggled in nice and cozy at the hospital anyways.

Well, Chad is at least. I'm barefoot on the couch at home with Linley.

I'm pretty sure he's cozy though since he loves the ugly socks they pass out there.

Odd man.

So keep praying that she is able to continue to fight this off, that nothing else rears its ugly head, that her counts recover quickly, and Oh yeah, that she beats Leukemia.

For the second time.

Jeez, she is such a complicated little sweetie and I don't mind a bit.

Monday, October 24, 2011

Normal/Not so Normal

I am thinking I may have a case of self induced "bipolaritis".

Is that even possible?

Because it sure feels like it sometimes.

Take yesterday, I was hanging with Linley at her soccer game drinking my warm chai on a chilly morning and I was treating her and her friend to pedicures afterwards before dropping Linley off at my sisters house to bake cupcakes.

I showered and wore make up. I threw clothes in the washing machine. I drove my car. I had conversations about the weather and Halloween plans. I kissed on my nephew.

Totally normal day.

And then there was today. Today was me with Piper and the endless laps around the Aflac Unit while attempting to chug my coca-cola and fend off her requests for Big Bird and allowing her to paste stickers on the doors so she wouldnt ask to eat.

I showered at lunchtime and totally forgot makeup. I pinned Piper into her stroller to walk to the laundry room. I followed her and her walker around and around. I had conversations about blood transfusions and fainting spells. I kissed half my family goodbye.

Not so normal day.

Not a bad day but I really am craving the ability to take off my shoes, grab a bowl of ice cream and catch up on what that crazy man and his 4 wives are doing on TLC.

What I am really craving is the life that I used to think would be so boring. Little did I know that all the last 2 years have done is make me ache for the simplicity of soccer games and dinner dishes. Of bare feet and laundry running. Of to-do lists and diy projects. Of both daughters cuddled together, playing together, living together.

I chose to enjoy the moments for what they are when I am here with Piper but I also fight against allowing myself to become angry at having so much snatched away from us.

I think that this "bipolaritis" may go nicely with my insomnia in an apparent attempt to make this mommy a hot mess.

Not going to happen, yall.

Normal or not so normal...we're doing it.

Tuesday, October 18, 2011

A plan is a hatchin'.

Not my plan of course. Somehow MY plan got derailed about the time I became a grownup and realized my parents were (surprise! surprise!) smart and telling me the truth when they said being a grown up was some hard work. My plan involved holding hands with my love while watching many little blond children run the backyard. It involved days filled with playing, baking, gardening, rearranging and teaching...not cancer and the steamroll of a path that it has made through such a simple plan.

Nope, my plan is on hold as I am learning ever more that holding onto the Big Guy is infinitely more important than I had ever thought possible. Not that I don't continue to have plans...somehow though it seems like someone else is making those plans for me an awful lot. And not that I have as many options anymore and not that I have the capability to make choices clearly very often these days.

(that goes for everything. Should I have more children? Should I shower? Should I argue with Linley about math facts? Should I eat pizza or subs for dinner? Should I buy a big thing of laundry soap or a small one? Should I shave Pipers head? Should I do this, that or the other thing?)

Should I move with Piper to Memphis, Tn to be treated at St. Jude?


Yes, that's the plan that we are a hatchin'.

There are doctors at St. Jude who have more options for Piper than the few we have been offered here. Here we are told that unless Piper can get to remission using the traditional chemo they are able to offer she will not be eligible for transplant. And even if there is a transplant that takes place there is little chance that the leukemia will not rear its ugly head and cause Piper to relapse yet again. St. Jude has experimental but positive evidence that there is an other option for children with high risk leukemia like my Piper. There is an article about it here

So the plan is that Piper and I will be going to St. Jude for a consult once her counts begin to recover from this round. When will that be? Who knows...hopefully within the month. And the rest of the plan is entirely contingent on what we are told during our consult and what Pipers leukemia is doing. I am certain that if Piper is taken on as a patient we will be there in Memphis for a few months as she goes through all the treatments prior to the transplant as well as the recovery from the transplant.

Chad will not be able to go. Linley will not be able to go. I am going to learn a whole different mode of mothering through technology at best. This is crushing me...I cannot tell you how much. We have chosen not to even tell Linley of this option until we know for sure what we will be doing and in which way this will effect her, as I am certain it shall throw her for a loop. Heck, I'm trying to not worry about not being with my sweet Linley for multiple months until I know for certain that this has to be the plan.

So there you have it. A plan. Its tentative at best but its got potential.

Potential is good. Leukemia is horrid. And this mommy is heavy hearted at the moment.

Sunday, October 16, 2011

day 11 of 28

Here we are. Back at Scottish Rite.

On Friday, Piper had a 8am sedation for chemo targeting her central nervous system. This went well and we planned to be admitted but there were no beds in Aflac so we were able to leave and go grab lunch before settling into room 187 for the rest of this 28 day round.

Piper has some rash on her body as a result of her Sorafenib (oral chemo) but because it is not causing her any pain or itching they are just watching her. She has this chemo twice a day at 8am and 7pm and the only complication she has had is the fact that she cannot eat or drink for 2 hours before and an hour after...ugh. There is a new chemo that Piper is receiving this round called Clafarabine. It is supposed to be pretty brutal stuff so they have timed her to have it in the morning from 10am-noon when there are doctors galore roaming about. So far, two doses in, she is handling it well. She gets a two hour break then she begins a two hour chemo called Cytarabine. The rest of the day she is able to hang out, stuck to the iv pole and her fluids, but still free to move and walk and charm everyone.

Today marks day 11 of twenty eight days. The above schedule is for days 10-15 and after that she will be only receiving her oral chemo twice daily for days 12-28. The plan is that she will be here until her counts recover...hopefully and prayerfully it will not be the same 6 week stay but it all depends on Pipers marrow and how well it bounces back.

We have a new option lately regarding Piper and what will be next for her treatment plan. I am tentatively optimistic and would appreciate prayer that the right choices are made for us. It will require more but has the potential to be more successful.

Things are blessedly slow around here but I am certain that many things will pop up. Prayers are appreciated, as are the notes, gift cards, meals and childcare that everyone is blessing us with. Please don't stop...its what keeps us rolling on.

Thursday, October 13, 2011

James 5: 14-16

"Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective."

(James 5: 14-16)

Tonight the pastors and elders of our church came over. Piper was anointed with oil and then the group of men laid hands on her little self and prayed.

Big prayers for miracles.

Big prayers for our marriage and family.

Big prayers for peace and faithfulness.

It was such an immeasurable blessing to us.

Chad and I are still not accustomed to the overflow of love that this church has bestowed upon us. Not in any way to pat them on the back but rather to thank the throes of men and women who see loving as a reality and not just a sermon.

Within this group of eight men standing in my living room, two of them are childhood cancer survivors and one of them is currently walking through his sons lymphoma diagnosis. The men that have been through this, get it. The rest of them are still faithfully bringing our family's name to their mouths each day in hopes that a cure will happen.

I don't know how prayer works. I do know that God is not a genie and that He will not necessarily cure my Piper if I only believe it enough. But He is capable and He will cure my Piper if that is His only job is to trust that the amount of love that He has for her vastly outweighs my own. Gods goodness is not reliant on how much I like or trust His plan.

And I do trust that because when life becomes so very hard and its uncontrollable and uncomfortable and unexplainable what else do I have? If I loose the trust in God that I have then I am left with no fathomable hope, but still all the uncontrollable,uncomfortable and the unexplainable that so can rattle someone.

No thanks. I cling to hope. And I thank God for good men who step up and put to action what is preached on Sunday soothed our souls tonight.

Monday, October 10, 2011

Linley the Soccer Star

My Linley tends to be the watcher in a group. When she was young, our favorite thing to do was to go people watching at the mall or park. She would have a little snack and be perfectly content to see faces and hear voices. She would watch with those big blue eyes that she still gets comments on and people would notice her and watch her back. When she was able to talk she would recall details of things that I never would have noticed and she would ask questions of things I would rack my brain to remember.

(Those sweet and pensive moments have not gone entirely away, thankfully.)

That girl, shes a watcher.

And recently shes becoming a mover as well.

Not unlike her mother, she is short. Also not unlike her mother, she is feisty. Totally unlike her mother though, she is showing skills in soccer. And somewhere along the way shes picking up a big dose of confidence and is doing an amazing job at keeping up with the game. Each Saturday she joins her team and follows directions well enough to keep winning...Three games in a row!

Now not only do we know that Linley is a watcher, shes also a mover and a shaker.

A very talented, confident and fiesty mover and shaker.

Lord love that sweet Linley Coe.

Wednesday, October 5, 2011

When something works out for once

Remember that time that I felt ridiculously downtrodden and wanted something, anything really, to work out for us? And I am easily impressed so this could be as simple as free parking at the hospital or as fabulous as a call saying "whoops our mistake, there was no leukemia in your daughter. Don't call us, we will call you".

That would be on par with Jesus's return, another event that I am certain will make me a little happy and not find myself wishing wine tasted like coca-cola so I could drink my sorrows away as I often want to do.

Rabbit trails? I know. Read on and see how something worked out for us, for once.

It was a long day in Atlanta and while Chad and I are very well acquainted with Scottish Rite, the Egleston campus was a whole different (much larger, more expensive) world. It took us a minute to find parking much less the way to the clinic. And while at the clinic it was confusing because they do things differently and we were totally getting the same look we give to people we see at Scottish Rite who look confused. Happily Piper did wonderful throughout the exam, throughout our meeting with Dr. Haight and in spite of the fact that walking around was not entirely possible due to space and health stipulations for the transplant patients.

The meeting went okay at best. Chad and I both left feeling a little less optimistic. In normal person language, Dr. Haight felt like Piper will need to be in remission or at the very least, under 1% MRD (minimal residual disease). With even the two percent she currently has she will probably not survive a transplant as well as the risk of relapse being almost definite. They are still weeding through the Bone Marrow Donor list, which is a total of 11 choices as well as the Cord Blood Donors who number 8. Dr. Haight would rather use a BM donor especially since another round of chemo is necessary and we should have a little more time to whittle the donors down into the best match. While she was very knowledgeable and kind, she was very matter of fact that Piper will need to meet the remission requirement in order for her to proceed.

Obviously that was not the thing that worked out for us. While we were at Egleston she had a CBC done to see if the leukemia was yet showing up in her blood work. If it had they would have been beginning chemo inpatient asap and things would be getting a little crazy once again.

Praise God.

Its not.

We are home. As in the apartment we pay rent at, not the hospital that we abhor/love because of what the people we know are doing to Piper there. As far as her blood work goes her little body has no idea that cancer is in its midst. So after a quick call to Scottish Rite we were sent on home. Music to my ears. Makes me want to dance. Big, big, big smiles for me...and tears, of course.

(Because its Tuesday and that's the scheduled day to sob regardless of location)

Tomorrow we will begin oral chemo at home twice a day for the first seven days of this new 28 day round. On Friday the 14th we will admit back to the hospital for Clafarabine and ARA-C on days 8-12 and she will remain there as long as they deem necessary (but hopefully not another six week stay) while continuing to receive the oral chemo but nothing else. After her counts recover at the end of her round she will have another bone marrow aspirate and hopefully at that time she will finally be in remission. I am not certain what would happen if she still has MRD but I am sure it will not be a good sign.

I was so blasted excited about being home for an entire ten more days that I bought the girls a new bedroom suite that (of course) needs to be stripped and repainted. You know, since I have all this free time. Today was so totally busy but in that happy way. I managed to plant mums, clean my floors, visit both Walmart and Trader Joes after doing the morning carpool, sand the new dressers, visit with my in laws and make a whole chicken in the crock pot for dinner. Mostly, I loved on my girls.

I have always loved the simple business of being a mom and I live for days like these where I am only nurturing, loving and being with my favorite people in the world. The hospital seems so very far away and for the next 9 days I shall pretend it doesn't even exist.

This really works out for me.

Monday, October 3, 2011

tomorrow (again)

Apparently I am running out of witty...most of my recent post titles are annoying even to me. Big halfhearted promises to improve on that after, say, leukemia is cured and I am working again will all of my own brain cells plus a good nights sleep.

Tomorrow at 10am Chad, Piper and I will be meeting with the Bone Marrow Transplant team at Egleston. There they will tell us what they feel is her best options at this far as I know a transplant is still the goal but how they chose to treat those remaining leukemia cells in her until then has not yet been told to us. While we are meeting with the team we will also be having Piper checked out. They will be asking us questions about her and looking her over to ensure they feel she is in good enough health to go through with the rigors of a transplant. Praise God, Piper is in the best health of her little life. She is strong and this is a very good thing.

Leukemia is developed in the bone marrow. At some point it begins to spill out into her blood and that is when it is typically detected. If there are suspicious cells in her blood work that is a sign to hurry, otherwise we should have a little bit more time to line up ducks and take action. Tomorrows CBC will tell us whether we admit then or whether we are free for a few more days.

Um, Id like to be free if anyone is wondering.

On a much more exciting note, my Piper walked from our bed to the window...a good 7 steps, by herself. There were tears. And when Chad and I realized she was enjoying our Hershey's toffee/almond nugget chocolates, we were quick to use them to bribe her to do more walking. She is so close...I can feel it. Since she has the walker, life is just easier but walking independently would be divine.

Here are some pictures from today when I told myself to "get the hell out of your PJ's Susanna and engage in some retail therapy". We went to Target...there was no puking so it was a major success. Of course, Piper remembered where the Elmo display was IN THE BACK OF THE STORE and Linley cannot pass up anything with sequins on it without begging for it so it was not unlike herding whining sheep with walkers to get the two of them back to the trash bag and shampoo aisle.

I was so pooped after that trip that I drank TWO coca-colas at the Mexican restaurant for lunch with my mom and the girls...and they were gooood.

(both the girls and the coca-cola)

Saturday, October 1, 2011


Yesterday was quite possibly the most difficult day that I have had in ages. More difficult that diagnosis, more difficult than relapse even. Difficult, dark and despondent.

While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.

We have a few options on the table:

1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.

All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.

When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.

For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.

Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.

Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.

What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.

"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"

(Proverbs 3:5-6)