Our Adventures with Ashley

Here we are….back for Round #5 of antibodies and our FINAL inpatient week in the PICU!! HOLLA!!!! 8) Even though Ash always manages to enjoy herself when she’s here, it’s gonna be nice to finish up these treatments and enjoy the summertime away from the hospital. It is truly hard to believe that we’re in our LAST WEEK of antibodies infusions. My dad always says, “Time flies by when you’re having a good time.” Well, this treatment hasn’t been as tough on Ash as we prepared for it to be and we certainly have been having a good time, so Pop’s right once again. 8)

The plan is we’ll be here in the PICU until Friday. The infusion of antibodies and the morphine pump started around noon today and will run for 10 hours. Based on past rounds, the nerve pain usually starts up about 3 hours into the infusion….she’s had no pain so far, so we’re prepared and on the lookout for any changes in her heart rate, blood pressure, her demeanor, etc. Right now, she’s playing “Draw Something” on her iPod back and forth with Carolyn, one of her favorite PICU nurses, and Ginna, the recreational therapist (plus at least 12 other people)….she just loves that game! Plus, Elizabeth (her BFF…the music therapist) and she just finished up a long set playing “Beatles – Rock Band” on the Wii. We actually brought the Wii guitar and drum set from home this time….we said, “What the hay…it’s our last week….let’s bring them.” Hunter and she did a lot of “rockin’ out” last night I heard. 8)

Also, Susu is in town again this week helping us out and she was here at the hospital earlier keeping us company. What a true blessing she has been for us through these treatments…Trying to keep our home routine as “normal” as possible for Olivia while we’re away each round. I just don’t know what I’d do without my momma!! 8) A few weeks ago, when we went to Mama Dip’s for lunch, we talked about one of my favorite sayings that they have framed and placed on their wall by the entrance….”A mother is someone you never outgrow your need for.” I just love that sign ’cause it’s just so darn true. I hope my girls never stop “needing” me like I still need my Susu. 8)

So if all goes well, we’ll head home on Friday, Pop will meet us in Raleigh (he’s actually leaving beach!), and we will get ourselves ready for the NC Children’s Promise’s “Run For The Promise” Kentucky Derby Party/Gala on Saturday, where needless to say, there will be a LOT of celebrating going on!!!! I’ll make sure to post some photos. 8) The last two weeks of May, Ash will take two more weeks of Accutane at home (they call this Round #6) and then we will do all of the tests and scans to see where we are. Praying to hear “NO EVIDENCE OF DISEASE” once again!!! PUH-LEASE!!!!! We’ll keep you posted!

Until then please continue to keep Ash in your thoughts and prayers in hopes that she will have an uneventful and pain-free week here in the PICU. Also, please keep our dear friends Dylan Price and Taylor Stewart in your prayers as they both are having to step up to the plate once again to battle relapses in their Acute Myeloid Leukemia. Please pray for Hunter’s stepfather C.B. Price, who is enduring some tough chemotherapy treatments right now to tackle his leukemia/lymphoma, as well as Ginger (Hunter’s mom) who is right by his side being the best caregiver anyone could ask for. 8). And last, but certainly not least, please continue to keep all of the other brave kids and their families, whom we’ve grown to know and respect immensely over the past 20 months and who are part of our pediatric cancer family now, in your daily thoughts and prayers. Some amazing, AMAZING kids I must say. Until later, I’ll leave you with a quote I read the other day that just made me smile….XOXO

“Wherever you go, no matter what the weather, always bring your own sunshine.”. ~ Anthony J. D’Angelo

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We’ve got Ash back at UNC. She and I have been here at the oncology clinic since 8:00am this morning and we’re getting ready to head over to 5 Children’s shortly to stay overnight. The rest of Ashley’s treatment last week (the IL-2 and ch14.18 antibody infusions) was fairly rough on her and I just don’t think she’s been able to fully recover yet. Over the weekend, we hung tight in Raleigh and she tried her BEST to rally and enjoy all the events we had planned with some of our dear friends for the holiday, but as they too witnessed, she just had no spunk….no matter what we did.

This morning, she woke Hunter and me up at 6:00am screaming out how her head was really hurting and never before had it hurt that bad. She was crying and next thing you know, she was vomiting. So I made a call to UNC and got her in the car to head over to the clinic. All day her blood pressure has been elevated….could be the “cause” of the headache or “causing” the headache. That’s the big question of the day. They did bloodwork, chemistries, etc. and they all came back fine. Last week during her treatment, she had issues with her potassium and magnesium levels and also her creatinine levels doubled, which made them have to discontinue the IL-2 infusions on Thursday (so she missed out on 24hrs of the IL-2). However, all of these issues have resolved and were back to normal. Also last week during treatment, she dealt with a bunch of fluid accumulation, low blood pressure and trying to balance the two. She’s still a little puffy, but definitely not as puffy as she was last week. But the difference from last week in that regard is that now her blood pressure is HIGH and ALL DAY she’s had a really bad headache, has vomited several times and even with 4 doses of morphine over the course of the day, she’s still saying her pain level remains at a 5 out of 10, but she’s saying she’s “learning to deal with it.” 8) They just sent us down to get a CT scan of her head to cover all bases. They don’t expect to see anything out of the ordinary on the scan….just needed to do it. She’s resting comfortably now and they just gave her a med to help lower her blood pressure, so hopefully when she wakes up, she’ll be feeling a little better. Their thought is that it’s either just lingering effects from the treatment last week OR it could possibly be a virus that they’ve been seeing over the weekend in several kids that is causing headaches. Who knows? I’m just ready for her to start feeling better and I’m glad she’ll be staying overnight to get some extra fluids and to figure this thing out. Sending our love….XOXO

(Update: They just came in and checked her blood pressure again to see if the BP medication they recently gave her had any effect. I was excited to see that her pressure for the first time today is back to normal and when we asked her what her pain number was and she said a 2! So we’re on the right track….let’s just pray for continued improvement!) I’ll be in touch when we have more to report.

(Update #2: CT of her head came back clean….all I can say is WHEW!!!!!!!!!!!!! HUGE sigh of relief!!)

Hello my Ashley’s Angels.  This is Ashley!!!!!  I feel like you guys are always with me!!!!!!!  Now I am going to tell you about my week!!!!!!!!!!!!  Last week we went to 5 Children’s. I went to school every day in the Hurricanes Room and did homework with my wonderful teacher Faith!!  My friend Taylor Stewart and I had lots of fun playing UNO Roboto and of course Taylor’s mom (Lorrie Stewart) was as funny as can be!!  Elizabeth came every day except Wednesday because she has to go to the Niro Science Hospital that day. My mom bought me THREE BOXES OF GUMMYS!!!!  One of my nurses (Britni) brought me a life size cardboard cut out of Justin Bieber.  He is really cute and hot!!!!!!!!!!!!!!!!!!!!  He stayed here over the weekend while we went home and now he’s in my room in the PICU!  He’s scared a lot of nurses.  I went home on Friday and my cousins (Katy Alex and Lily), my Aunt (Leigh Leigh), my grandmother (Susu) and my grandfather (Pop)  were all at the house.  All four of us had fun playing on the swing!  We did a fashion show and Olivia did our makeup!!!!!!!!!!!!!  My dad cooked out steak, my mom and Leigh Leigh cooked potatoes, spinach salad, and squash.     YUM!!!!!!!  Katy Alex slept with me in my queen size bed. She kept leaning over me because the clock was on my side of the bed. But do you know why she did that?  Huh do you know why???? Well the lottery was that night and she really wanted to know if we won, so little tired me walked downstairs with her to see who won the lottery. The most money we got was 9 dollars. Finally we went to sleep.

On Saturday, we spent the first part of the day in Chapel Hill of all places!  We first went to the UNC Basketball Museum.  It was very fun!!!  Next we went to Mama Dips and I had fried chicken. The grown ups were thinking how cool it would be if we got to meet Mama Dip. Then someone made a suggestion and said maybe we can say that the grandchildren want to see her so they did. And we actually got to meet her!! We took two pictures.  One of her with all the grandchildren and one where Pop kissed her on the cheek.  We all walked down Franklin Street and showed KA and Lil the Old Well because they had never seen it.  Then we went to Top of the Hill to get dessert. My sister was scaring me by saying stuff like if you lean over you’ll die (very tall building, there is outdoor seating, they let you see down, again very tall).  Then I scared Olivia by picking up my plate and holding it out where the big drop was. But that day wasn’t the best day to go there.  It was very busy so we left because we didn’t get any service. But we had to leave anyway for a Hurricanes Game!!!  We had really good seats. We were given center ice seats by our next door neighbors and we were also given tickets to a suite by some of Daddy’s work friends!  All of the girls and my dad were in the suite.  Leigh Leigh, Mommy, Pop and Susu were in the center ice seats. Katy Alex and I wanted to go to center ice in the third period, so we did. We got on the Jumbotron!!  Guess how many times.  TWO TIMES!!!!!!!!  And that really got us pumped!

The next day (Sunday) KA, Lily and Leigh Leigh all went back home to New York.  I am going to be in the Hospital this week, so my sister got to go with them since it’s our spring break. She is going to have lots of fun!!  When they left we had to start packing.  Finally we were ready to go!!!!  The nurses helped me to get settled.  Susu spent the night because she is sweet and she let my parents have a “Date Night!”  They went out to eat and then to see The Hunger Games even though my mom had already seen it with Olivia and her friends.  My dad really liked it !!!!!

The next day (Monday), well one of my favorite nurses (Linda) took care of me!!!  And guess what!  She said you are one of my favorite patients!!!  So my Mom comes at day time and my Dad comes at night. But the last time I went to 5 Children’s, my Mom spent 3 days because Dad was in Dallas.  (Tuesday A.K.A. Today)  this is what medicines I’m taking…IL-2 started at 10:00 and runs for 24 hrs. and the Chimeric A.K.A. Antibodies started at 12:00.  I have a button that I can press and get morphine if I need extra.  It makes me really tired.  I have had a few fevers so far and I’m extra puffy today, but I’m okay.  I will be here until Friday.  I think that’s all.  Thanks for reading my 3rd post!!!!
Love,
Ashley <3

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First of all, I’d like to send out a HUUUUGE thank you to all of you that sent our family such sweet messages, letters, texts, emails, calls of support after Ashley announced her big N.E.D. news last week!  I just can’t express how blessed and overwhelmed we all feel discovering how many people are out there following Ashley’s journey and rooting for her complete cure!  THANK YOU SO MUCH!!!  Over the past week, Hunter and I have received a bunch of questions….”What does this mean?  Does this mean she’s done with treatment?  Is she “cured” of cancer for good?  Should we take her off our church prayer list?”  We felt we should clear things up and explain where we “really” are. 

When we received the email from Dr. Blatt last Thursday saying that the report from the MIBG scan showed “no evidence of disease”, we were completely blown away, as this was NOT something we expected to hear.  Ashley has been going through treatment for over a year and a half and this was the FIRST TIME we’d gotten a scan back that said “N.E.D.”  With the MIBG scan, a radioactive isotope is infused into Ash on one day, it goes into her system and attaches to any neuroblastoma in her system, and then the next day she gets a scan and the areas with neuroblastoma light up.  So in this particular scan last week, nothing lit up anymore!!  Needless to say, we were overly pumped by this news!  Hallelujah!!   However, this is just one scan and we haven’t checked her bone marrow yet.  The last time she had a bone marrow biopsy, there still were small traces of neuroblastoma found.  We still need to continue on with Rounds 4, 5 & 6 of her antibodies treatment, finish that up and then we’ll do ALL the scans/tests/biopsies and see where we officially stand.  There are lots of neuroblastoma patients that achieve N.E.D. status even before transplant (that actually is the GOAL…..we just never got there) and they continue on with the protocol…. (i.e. transplant, radiation, antibodies).  Neuroblastoma is just THAT UGLY of a cancer.  It likes to hide and be undetectable and show up again down the road.  It’s like a big party pooper who doesn’t like to leave the party and keeps coming back when you think they’re gone for good. 

And just so you know…..I by no means whatsoever want to sound like “Debbie Downer”….. just more like “Realistic Rita.”  We don’t want to think negatively….that’s just not how I roll anymore.  8)  Hunter and I, I guess you can say, are just “guarded”…..we’ve seen way TOO many of our friends over the past couple of years reach N.E.D. and then have to deal with a relapse (or relapses).   Understand that we are rejoicing this week in our exciting news and “taking it all in” as best as we can.  We are totally stoked and smiling from ear to ear!! 

With that, we will continue on with antibodies and on Sunday afternoon, we will head on over to UNC to start our 2-week Round #4 on Monday morning.  We will spend the first week on 5 Children’s for Part 1, and if all goes well, we’ll come home on Friday for the weekend and go back on Sunday to get ready for Part 2 in the PICU the following week.  PLEASE continue to keep Ashley in your thoughts and prayers as she continues on with treatment.  On our last “2-week round” (Round #2), the main side effects she had to deal with were high fevers, itching, nausea, and on Part 2, her creatinine increased on Day 2 and we had to stop the IL-2 infusion altogether.  BOOO!!  We’d like for the next two weeks to be easy-going and uneventful…..well, FUN events we’ll allow.  8)  WE’RE READY TO GO!!!!  WISH US LUCK!!!  Thank you again for sticking with us on our crazy adventure!!  XOXO

It’s me Ashley again!! Ok so I have got some big news THERE IS NO EVIDENCE OF DISEASE!!!!!
Now here is the details…… Ok so this morning I had to go to a TWO HOUR SCAN!!!!!!! When I was done with everything I went home my mom picked up the iPad she got an email from Dr.Blatt and it said there was no evidence of disease I heard some noise so I came and looked what it said I saw it and I started balling my eyes out my dad and my sister came in and they started crying too we were so happy and could never get happier EVER!!!!! We were very excited and I hope you are too!!!!!

I LOVE BEING N.E.D.!!!!!!

Hey everybody! This is Ashley. For once I am writing a post!!! I am at the PICU. All of the nurses and doctors are sooo awesome!!!!!! We are so blessed to have all of you to help us through this journey!!! At the PICU the best part is hanging out and playing wii but the worst part is getting my shot and when the Benadryl hits because I never like to go to sleep and the Benadryl makes me tired. But I am living the dream because we have doughnuts, chocolate and gummy bears!!! The medicine is not that bad. I am going to go home on Friday which I am excited about!!! Thank you for reading my first post EVER and Thank you for all of your prayers!!!!!!!!

Everything’s going VERY well so far this week with Ash’s treatment. She’s been able to keep on top of the pain, she’s kept the fevers away so far, she’s been entertaining the hospital staff AS USUAL, she’s been playing the Wii and with her iPod a lot, she’s made signs to hang all over her glass doors…..and even though over the past two days she’s been dealing with a “great” amount of morphine, Benadryl, and Tylenol, she hasn’t napped either afternoon (like she “usually” needs to do with all these meds). She’s just been enjoying herself too much, but now she sleeps……ZZZZZZZZ (Isn’t she a trip.)

Here’s hoping for continued luck on this round!!! Thank you for checking in and for continuing to care! XOXO

Earlier this evening, we got Ash checked into her room in the Pediatric Intensive Care Unit to prepare for the start of Round #3 (out of 6) of the antibodies treatment. We had a FABULOUS 3-week break from being in the hospital after the 2nd week of Round #2 was over. I’m sorry I never updated with info on round….it was just kind of a strange week….I’ll leave it at that. 8) Anyways, this round should be similar to Round #1…four days of infusions during the day and if all goes well, we should be able to go back home on Friday and have 2 weeks at home before the start of Round #4. We know how things work in the PICU now; we know the doctors, fellows and RN’s down here and they know us; we’ve figured out the appropriate amount of morphine to keep Ash’s pain managed without putting her to sleep all of the time, etc….not too scary anymore. She’s got her pink zebra sheets all setup, her soft blankets close by, and she was getting Hunter to hook up the Wii when I was leaving to come back to Raleigh tonight….she’s perfectly happy and ready to go. The plan is to start up the infusion first thing in the morning. Wish us luck!!! 8)

A HUGE thank you again to my heroes…Anderson Ward & Steve Snare…who honored Ashley and other kids with cancer once again by shaving their precious heads for St. Baldrick’s!! With the help of your VERY kind donations, I heard from his mom earlier tonight that to date they’ve raised $3,226 that will go towards pediatric cancer research!!! WOO HOO!! Thank you all SOOO much for helping them in their efforts!! It meant so much to us and our family was so proud and honored to watch two of the most amazing third grade boys blow us away with their bravery, dedication and compassion!! They were precious from the start and look just as cute with bald heads!!! Thank you!!!! XOXO

In about 24 hours, 8-year-old Anderson Ward from Wake Forest, NC, is going to put a green cape around his neck and prepare to shave his head for the second year in a row…..all in an effort to help raise well-needed funds for pediatric cancer research.  How many 8-year-olds do you know who would do that???  Last year about this time, I received an email from Anderson’s mom, Renee DeLoach Ward.  (For those of you from Greenville this name may ring a bell for you…Renee was a year older than my sister Leigh and Renee’s younger brother Joe DeLoach was my age.)  Renee let me know that Anderson and his classmate Steve had decided to participate in an upcoming St. Baldrick’s Foundation event by shaving their heads to help raise money for pediatric cancer research and she said that Anderson was doing it in honor of Ashley.  On that day, Ashley was inpatient on the Bone Marrow Transplant Floor preparing for her stem cell transplant and to hear that this young man, whom we had never even met in person, was doing such a grownup thing in honor of Ashley…..well, needless to say, it blew us away and truly warmed our hearts.  So when Renee emailed me recently to let us know that Anderson planned to do it AGAIN and hoped to raise even MORE money for pediatric cancer research this year, well, needless to say, we were TRULY touched and were so excited that we would  be able to attend this year to cheer him on!!! 

For those of you who have followed Ashley’s journey for a while, you may remember the St. Baldrick’s event that we attended last May where Ashley and many of her other “UNC friends” helped to shave Dr. Stuart Gold’s head.  We had never attended a St. Baldrick’s event prior to that day and were FOREVER changed by it.  The love in the room, the hope, the laughs, the tears…..it was truly an overwhelming experience.  Seeing Ashley and her friends there that day watching “other” people shaving their heads to honor ”THEM”…….it just blew us all away!  So needless to say, we just can’t wait to go to THE FACTORY in WAKE FOREST tomorrow afternoon (Saturday, February 25th) to root Anderson and Steve on and to give them HUGE hugs in person!!!!  He’s scheduled to shave his head around 3:30pm tomorrow afternoon, so if you’re in the area, come on by to help us cheer for Anderson and all the other amazing volunteer shavees!!!  I noticed that some other UNC kids are being honored tomorrow as well, so it should be a good time!  8)  If you’ve never been to a St. Baldrick’s event, I highly recommend you go to the St. Baldricks’s website and find one happening close to you! 

The St. Baldrick’s Foundation is a volunteer-driven charity committed to increasing awareness of pediatric cancer through charitable fundraising events that help support the most promising research to find cures for kids with cancer.  It coordinates worldwide signature head-shaving events where volunteers get BALD to stand in solidarity with kids with cancer and raise money to support life-saving childhood cancer research.  From 2000 to 2012, more than 210,000 shavees, including over 20,000 women, have shaved their heads at more than 5,200 St. Baldrick’s events worldwide.  Last year, more than 1,000 events were held and more than 45,300 volunteers, including over 5,200 women, shaved their heads – the most in St. Baldrick’s history!!  Since the foundation’s inception in 2000, over $123 million has been raised for pediatric cancer research…..over $28 million was raised in 2011! 

PLEASE consider taking a minute to support Anderson’s efforts today with a gift of financial support (ANY AMOUNT YOU CAN) to the St. Baldrick’s Foundation and in turn you will be helping to bring more HOPE to our family and all of the other families affected by pediatric cancer!!  To make your donation, please click on the following link:  http://www.stbaldricks.org/participants/AndersonW

Take a peek at some photos Renee sent me of Anderson “in action” at last year’s event……THANK YOU!!!!!  XOXO

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And for all you Prayer Warriors out there…..PLEASE say some extra prayers for our dear 13-yr-old friend Taylor Stewart, who has been battling AML (Acute Myeloid Leukemia) for the past year and a half, and just found out this week that she has relapsed for the third time and will have to endure another long schedule of intense chemotherapy and ANOTHER bone marrow transplant!!!  (Her last bone marrow transplant was EXACTLY a year ago tomorrow….February 25th).  She is an AMAZING girl with incredible spirit and spunk and her mom Lorrie has been fighting by her side the whole way.  Please do me a favor and keep them in your daily prayers in hopes that Taylor and Lorrie can hang in there and beat this cancer down once and for all!!  As Taylor said, “Third Time’s The Charm!!!”  WE LOVE YOU TAYLOR AND LORRIE AND WE’LL ALWAYS BE BY YOUR SIDE!!!  XOXO

Linda, Erin and Robyn with Ash 8)

So we’re back in the PICU, in a little bit larger room than last time, with a great view of the front of the hospital and the infusions started earlier this morning. This trip, she will be getting another 4-day infusion of the IL-2 (just like last week, but a slightly higher dose) as well as a 12-hour infusion of ch14.18 antibodies each day for four days. If all goes well, we should be able to go home on Friday.

Ash was discharged from 5 Children’s around 4:30pm last Friday and we were able to enjoy a nice relaxing weekend at home. Hunter and Ash actually slept in until 10:45am on Saturday!! Those late nights on hospital time just wore them plum out!! She got to have a playdate with two of her “besties” from school on Saturday, which totally made her weekend! 8) We missed Olivia though….she was away for the weekend on a retreat with her youth group…..but the four of us got to spend a good portion of the day all together on Sunday before having to split up again and head back to UNC.

We arrived back here last night, with chicken wings in tow, just in time to cut on the TV to watch the Super Bowl (and the commercials, of course). We got her room all setup with her pink zebra sheets from transplant times and her soft pillowcases and blankets, so she’s all set and ready for the week. We were excited to arrive last night and see MacKayla (one of our favorite nurses from 5Ch) floating in the PICU who was there to welcome us in…it’s always so nice to see familiar faces. 8) And then we lucked out and got Linda as our nurse again for our first day at the PICU. They also send nurses down from 5Ch to hang the IL-2 and the ch14.18, and we got to see two more of our absolute favs, Robyn and Erin. I can’t tell you how comforting it is to know we’re in such good hands with knowledgeable nurses who look out for Ash and her best interests, take the time to explain things and answer all my questions, all with smiles on their faces. Makes a mama happy. 8)

They’ve got her setup on a PCA pump again so whenever she feels pain from the antibodies, she can be in control and push a button to receive an extra dose of morphine. She’s had to press the button a few times today, but so far, so good. She’s been resting for the past hour now and our goal is to make sure she stays comfortable and to keep away any pain. Please continue to keep her in your thoughts this week as she continues to be one of the coolest kids I know. XOXO